My complications

hello

2007-04-09T17:38:00.000-04:00

Hi Jaime and everyone else.........deleted my mysapce page for strange reasons and I'm missing you guys but I do have anew one heres the link info u will need to find me(mandiesueny@verizon.net to look for me under email) ( or my display name is 12amanda14) to the new page but I think you will probably have to make a friend request to be added as my friend again. Sorry and thanks Jaime for caring.

Still alive.....

2006-12-27T13:38:00.000-05:00

hey guys sorry if I kept everyone worrying. I really now only post on my other blog and there is lots of news there good and mostly bad. My other blog is located at http://home.myspace.com/index.cfm?fuseaction=user&MyToken=f6e2b50f-c67f-4ad9-96cb-353c3db3ee1e so if ya wanna know what's going on with me just go here.

2nd dose of Tysabri done with no problems thank god.....

2006-10-23T22:32:00.000-04:00

The only problem I had this time that were the same as last time was my horrible aching back. I did however find the culprit. It was the chair in the infusion room which by the way is a tyoe of reckiner but it sits you up straight with a forward leaning and taht is why my back is still in agony. But can't complain too much no problems but the back ache and not Tysabri's fault. i think I felt a lil more comfy this time because I got a full neuro exam before and have to get one every time I believe. Am pretty much at the end of recovery from my relapse and praying to god I don't get another one this year that is my goal. (sure set a goal I have NO control over.)Been trying to have more of a positive attitude which lord knows I need.......

Beginning Today

Beginning today I will no longer worry about yesterday. It is in the past and the past will never change Only I can change by choosing to do so.

Beginning today I will no longer worry about tomorrow. Tomorrow will always be there, waiting for me to make the most of it. But I cannot make the most of tomorrow without first making the most of today.

Beginning today I will look in the mirror and I will see a person worthy of my respect and admiration. This capable person looking back at me is someone I enjoy spending time with and someone I would like to get to know better.

Beginning today I will cherish each moment of my life. I value this gift bestowed upon me in this world and I will unselfishly share this gift with others. I will use this gift to enhance the lives of others.

Beginning today I will take a moment to step off the beaten path and to revel in the mysteries I encounter. I will face challenges with courage and determination. I will overcome what barriers there may be which hinder my quest for growth and self-improvement.

Beginning today I will take life one day at a time, one step at a time. Discouragement will not be allowed to taint my positive self-image, my desire to succeed or my capacity to love.

Beginning today I walk with renewed faith in human kindness. Regardless of what has gone before, I believe there is hope for a brighter and better future.

Beginning today I will open my mind and my heart. I will welcome new expereinces. I will meet new people. I will not expect perfection from myself nor anyone else: perfection does not exist in an imperfect world. But I will applaud the attempt to overcome human foibles.

Beginning today I am responsible for my own happiness and I will do things that make me happy....I will put me first, for if I'm not happy I cannot make anyone else happy. I will admire the beautiful wonders of nature, listen to my favorite music, pet a kitten or a puppy, soak in a bubble bath...pleasure can be found in the most simple of gestures.

Beginning today I will learn something new; I will try something different; I will savor all various flavors life has to offer. I will change what I can and the rest I will let go.I will strive to become the best me I can possibly be.

Beginning today and ever day.....

sorry to keep everyone in suspense....

2006-10-08T11:27:00.000-04:00

Well I did end up choosing Tysabri and went for my infusion on the 22nd of September which was a Friday. Came home feeling okay I mean I get infusions every month. Later that day and on into the early evening my back was aching something fierce but thought not that big of a deal because I just cleaned my house more than normal all week long. Saturday when it was hurting real bad and I needed some of my Gabapentin I called the dr's office and got a call back with lighning speed because I was told you can not take ANYTHING with Tysabri. You can however take symptom management drugs THANK GOD. Well of course the gabapentin nor the million mg. of Ibuprofen I took helped my back pain at all and it just kept getting worse and worse. So Monday I called my dr's office and explained it all to the Tysabri Nurse that my back was aching all weekend she said yep you have the number 1 side effect. I was ok and that would be what exactly because in all the info on it it says nothing like that. I just had to sign billions of papers telling me the side effects. She said oh honey I'm sorry to scare or confuse you the number 1 side effect is a UTI. Oh duh i knew that too just didn't even think of it. So she told me to go to the hospital they'll test me I'll take antibiotics and all will be well again. BULLSHIT!!!! Needless to say there was nothing wrong with me found in any of the tests they just told me to go home and drink the appropriate fluids and you'll be fine tomorrow. again BULLSHIT!!!! Now the hospital that I went to doesn't really deal with MS on a regular
basis like the hospital my MS clinic is at so got an appt for Tuesday. Go there get the norm Neuro evals to be told that I'm relapsing and they wanted MRI. Ok whatever Mri showed 12-15 new big enhancineg lessions, They said they wanted me to be admitted to hospital and on sterods days ago. I was terrified because thought that you could not do anything with Tysabri. So wrong agan on that steroids are ok if and only if you are having a relapse. So 4 Mri's later which by the way showed no signs of PML what so ever, 5 days later feeling almost my MS normal I guess the only residual side effect left is my vision which is horrible so excuse the spelling errors. I am going to get Tysabri again on the 20th of this month and will get Mri next day and see Dr same day.....wish me luck....

had to make a VERY tough decision.....

2006-09-06T22:29:00.000-04:00

not that I wanted to have to make the hardest decision in my ENTIRE life...but I HAD to for my own benefit. I decided to go for the Tysabri. I guess what (strangely enough) made me chose this path was because I have 4 kids I can't be in the hospital for 8 days every month. Foolish maybe but really I had to make this decision with no other "help". It has been very very very hard to do. In all honesty I'm not even sure if this is what I want to do...not sure if I want to do either of my options. I do trust my dr's and know if they say I need something well then I do.....it's not too hard for me or anyone else (my 3 yr. old included ) to notice that my MS gets worse everyday. I just don't know anymore what to do about anything, I know that my depression gets deeper and stronger every day and sometimes I think if suicide wasn't the most selfish fucking act I think that would be the choice I would make. I do have 4 kids that need me wheelchair or not, both legs working or not my vision bad or good, my hands working or not THEY NEED THEIR MOMMY!!!!

sorry been gone 2 long

2006-08-31T21:51:00.000-04:00

WELL THIS IS GONNA HAVE 2 BE SHORT AS ITS 2 HARD 2 TYPE WITH 1 HAND CUZ THAT'S WHAT IM LEFT WITH. MY LEFT HAND DECIDED ABOUT 2 WEEKS AGO TO QUIT WORKING.MY EYES ALSO DECIDED THAT THEY WANT 2 BE BLURRY.
I WENT TO MY MS SPECIALIST YESTERDAY TO SEE THE RESULTS OF MY MRI. NOT GOOD NEWS NOT AT ALL. I HAVE MANY NEW ENHANCING LESIONS ALONG WITH 5 BLACK HOLES ON MY BRAIN. 4 NON MS KNOWING PPLE THE ENHANCING LESIONS ARE ACTIVE MS "SPOTS" IF YOU WILL. WHICH THAT IN ITSELF I SUPPOSE ISN'T A HUGE DEAL I'VE HAD MORE THAN I HAD YESTERDAY. MY DOCTORS WERE VERY CONCERNED BECAUSE MY BRAIN ACTIVITY IS WAY TOO ACTIVE AND SENSE I'VE BEEN ON EVERY MS MEDICINE WITH NO RESPONSE THERE IS A LOT OF CONCERN FROM THE DR'S & MY FAMILY AND OF COURSE MYSELF!!! I'M TERRIFIED!!! THEY GAVE ME SOME TIME TO DECIDE BETWEEN 2 DIFFERENT "NEW" MEDS. BOTH OF WHICH ARE SCARY. THE 1 ST ONE IS TYSABRI WHICH HAS KILLED 2 PPLE. BUT IT HAS ALSO HELPED SOOOO MANY MORE. THE DISEASE THAT IT CAN CAUSE CAN BE MONITORED FOR AND I CAN THEN STOP THE MEDICINE. THE OTHER IS CALLED PLASMAPHERESIS WHICH IS WHERE I WOULD HAVE TO BE IN THE HOSPITAL FOR AT LEAST 8 DAYS EVERY MONTH.

WHICH BASED ON THE 2 I HAVE NO IDEA WHICH ONE I WANT TO DO AND I HAVE THE WEEKEND TO MAKE A DECISION. HOW DO YOU DO THAT LIGHTLY??? LET'S SEE TAKE A DRUG THAT HAS A VERY GOOD CHANCE OF MAKING YOUR LIFE WHAT IT USED TO BE BUT OH YEAH DON'T 4 GET TO ADD IN THAT LITTLE FACT THAT THIS MED CAN KILL YOU.....OR HAVE THEM MESS WITH YOUR BLOOD STAY IN THE HOSPITAL 8 DAYS EVERY MONTH FOR A MED THAT IS IN ITS TRIAL STAGES???? I JUST DON'T KNOW WHAT TO DO??? IF I WASN'T WORRIED ABOUT MY FUTURE BEFORE (YEAH RIGHT) I SURE AS HELL AM NOW AND EVEN MORE. IT'S JUST NOT FAIR!!!!!!

Funny....

2006-07-19T22:12:00.000-04:00

I get the word of the day emailed to me every day and today was a little humorous to say the least......(like I DON'T know what this word means)

exacerbate
DEFINITION:
(verb) to make worse or more severe.
EXAMPLE:
The roads in our town already have too much traffic; building a new shopping mall will exacerbate the problem.
SYNONYMS:
aggravate, infuriate

Have to have an angel on my shoulder or up my ass????

2006-07-18T23:55:00.001-04:00

Okay let me explain that strange title. First off my "recovery" from this scariest relapse EVER has actually gone quite smooth. Now of course I'm not recovered 100% yet as that could take (what so far has felt like FOREVER) a little while longer. I am however "walking" by which I mean I can now move my right leg A LOT better than I could a few weeks ago as a few weeks ago I could not move it at all. My "walking" has a little kind of a gimpy strange limp to it and I still have foot drop like you would not believe but the way I'm looking at it is I'm NOT in that damned chair. My Physical Therapist is helping A LOT!!!! she is great and gives me easy yet hard exercises. Easy for example sit down and stretch my legs out (easy enough) hard like march in place which is VERY hard to do for my right leg because that requires lifting it up as far as I can it is VERY painful and VERY hard to do. I'm very glad that I'm one of those lucky people that Solumedrol helps. I honestly don't know what I would do with out it. I'm not gonna lie and say the steroids are all a walk in the park because believe me they definitely are not they have their downs, like the fact that I went 5-7 days without more than probably 10 hours sleep and with nothing to eat. That definitely isn't good and I think I have lost maybe a little more weight, I can not tell, and I refuse to have a scale in my house. I do know that when I get to feeling a lil better well I take WAY too much advantage of that and hurt myself by WAY overdoing it. You know I use all my spoons by like 8 am. So after almost a week of doing that to myself I had to MAKE myself stop and breath and take a break and only do what HAD to be done around here. I mean I DO have 4 kids who are all old enough to help around here and in all actuality if any mess is made it's because THEY made it. They have been doing pretty well at cleaning up after themselves.

Still not sure what is going on for the medicine front, won't know much more than I do now until I go see the DR. on August 30th. So I'm pretty much keeping my fingers crossed that Tysabri is an option, not sure if it will be because I'm not RR. So we shall see...........

Have to have an angel on my shoulder or up my ass????

2006-07-18T23:55:00.000-04:00

New medicines......some that are scary.....some that are very welcomed.......some that I hope help me.....

2006-07-08T09:04:00.000-04:00

Well I went to the dr. on Wednesday and got a crap load of medicines. I think taht probably the most welcomed one is the Baclofen. I am to take this and my Tizanadine that I have been taking for 5 years with no problems it just isn't strong enough to help with my spacticity which according to my Dr. in my right leg it is so bad that my leg is more rigid than a rubber band. I now can take my Topamax provided I acn manage a week without my Neurontin. because you can not be on both of the medications. Right now though not taking my neurontin is a VERY difficult task as the nerve pain in my legs my right most especially is almost unbearable. Another new medicine is Trazodone mainly due to the fact the my Elavil just isn't working anymore, I'm assuming my body has just made itself "immune" to it as I have been taking it for 5 years. I'm more taking it for the sleep element than anything else and for my anxiety because it is not a strong enough anti-depressant for me. I'm pretty sure that those are the drugs except for the one that I'm most excited about and everyone else is begging me not to follow through with and that would be Tysabri. My doctors office will be going through the TOUCH training program this week. I'm very excited for this as it is my last hope because NO other MS drugs has worked for me so far. My husband is terrified that I will be one of the un-lucky ones and will get the PML from it. My doctors office I believe has me covered in the safety departmnet as they are requiring 3 MRI's a month while on this drug. When I start Tysabri I will have to go on pills to raise my blood pressure up a bit as Tysabri lowers it and I already have VERY low blood pressure. So that's my news on the drug front anyway.

Now on to my news about my MS in general. My right side is always the most affected side from my MS and I kind of received wome scary news at the Dr. 's office. You see I knew that my right leg was well almost not there sort of like I could feels it pain mostly yet couldn't lift it but a little bit. Well as days went on it got worse day by day. So much to the point that my Dr. said it is comparable to being paralyzed. She said my left leg is like a "normal" person's leg just a lil weaker like I had just walked 5 miles. She also said " I don't mean to scre to you but I don't honestly forsee it becoming much better". That is VERY scary!!!! She then ordered 3 days of steriods to br infused and then 3 more of the prednisone which I supposed equakls out to be 6 days of 'roids. It has been forever and a day since I have taken the pill form but I figured it's not gonna hurt any so why not right?? I just am so terrified as to what's next. I'm just too young to be going through this in my opinion. I will be getting PT daily for 3 hours. How in the hell am I supposed to handle that?? She sait we ahve to get it so my right leg at the very least doesn't become immobilized. What is she crazy I do my best to "walk" if you could call it that at least 5-7 times a day kind of "dragging" my right leg behind me yet trying so god damned hard to lift it cuz I'm not gonna let it be immobilized if I hav my way ( which so far I'm not having my way the MS is)........

sorry to be coming back all depressing....

2006-06-29T22:28:00.000-04:00

Well the title says it all I suppose. Since my last post well things have been going downhill at a super fast speed. I now have been unable to walk for awhile which is scary as all hell and not to mention painful. See no one understands it hurts just as bad (on my legs) to be sitting all day as it does to be walking or standing on them. It's soooo hard doing this all alone too. My mom took a leave of absence from work 2 weeks ago to come help me and I have not seen her at all except last saturday which was my son's 12th b-day. Quorry works all these fucked up hours which to me feels as though I am a single mother. I HATE it, it is soooo hard I just can't do it anymore. I'm sick of all these people saying I will come help you..well fuck them because I would rather them say nothing at all then to make these false promises or give me false hopes to see no help from anyone. Now I feel as though I sound like I'm a self-centered bitch.....well maybe I am. Who knows??? I just thought that family was supposed to be there for you..not use you as an excuse for everything under the sun..."oh sorry I can't because Amanda is sick" screw that if people are gonna use me damn it come help me because god knows I need the help. As of late the only person who has helped me is my father-in-law. He has taken the 3 boys whenever he can which helps sooooo much. I guess to me that is so hard to see that with the family I have I can only count on him. Thank God I can count on him at least. I just don't know how much more of this I can take before I try something stupid. I don't think I can handle much more of this honestly. K moving on before I go even more crazy than I already am.

Andrew's 12th b-day was saturday. I can not believe that he is 12. Where did all that time go?? He is in Virginia with my FIL right now and will be back I believe on Fri. or Sat. He will be so happy because I got his computer camp application in soon enough and I got the acceptance letter today. Speaking of letters like that I got Kaylee's today and she is accepted to go to school next year. OMG how am I gonna deal with my precious 3 year old being in school??? I guess it will be easier on me yet harder. Easier because no children to have to take care of all day...harder because of no children to have to take care of all day. Make sense???

Oh almost forgot almost the most depressing part of me not being able to do much for myself...I am unable to go to the Kelly Clarkson concert. That just breaks my heart too. I was finally looking foward to something that I didn't think (this damn MS) could take away from me. Boy oh boy was I wrong so I gave my ticket to my sister's best friend so I hope that they have a good time.......

an update on well me....if that is not selfcentered I don't know what is....

2006-06-10T23:52:00.000-04:00

I got Novantrone last Friday and let me tell you I don't like it anymore. I used to count the days down on my calendar waiting wiht anticipation and joyful excitement for my every 4 week treatment. Well because it used to help me. Now it just honestly makes things 10x worse. The doctor pretty much (not verbatum) told me that I'm what she hates to call a "lost cause". That is scary she said Tysabri might be my next option. I read that the FDA said it may and most likely be available in July.

To me this is devistatingly terrifying. Come on I am only 26 fucking yrs old. I feel like what is the point...just take the symptom managment drugs and say fuck it nothing else is gonna help. Sorry for the pessimistic attitude.

My gait is horrible..having a hard time walking at all and I have fallen alot 5 times today. Due to the fact of my anmeia it looks like someone beat me because some of the bruising is horrid. Now I have that numbness crap....u know the kind that you can't make people understand how it is and they say oh ok I know how that feels. Fuck that no you don't. This is the first time that is from my hips to my toes. That sucks beause I can't feel my happy place( you know the place I need to feel while making love) and I've never had this before.

So basically I'm doing worse.....but I'm surviving....

2006-06-02T01:09:00.000-04:00

2006-05-31T22:08:00.000-04:00

Don't want to seem like a whinny quitter of a bitch .....but guess what I am right now...

2006-05-25T22:40:00.000-04:00

I really feel that way now!!!! Yesterday I guess started it all I guess you could say brought it all out. First of all I'm in another relapse and I just got over my previous one. So I thought maybe I was wrong (I guess more hoping than anything) Sheila (my nurse) was here to flush my medi-port and asked me how I was doing told her that my vision is way worse and she pointed out just from the few words I had said to her that my speech is very bad again. She checked me (the normal Neuro. examine) and said just from last week when she came to redo the paper work with my that my right side is 70% (or so) weaker than last week. I pretty much knew that so I was dealing with all of that fine. Then she asked me if I was in an MS support group and I said no because the closest one was in Ellicottville and she said well that isn't very far away I said no it isn't really but to me a person that most of the time can not drive it might as well be a hundred miles. I told her that I get a lot of online support she said that she thinks maybe I should see somene because in her words ..."Amanda you need to make it more about yourself once in awhile..you need to learn how to be more focused on AMANDA!!!! If you can not do that then what good are you for YOU??" I lost it I just started bawling and aside from a lil bit today have been crying since. Then more and more those horrible thoughts of how do I just quit come rushing back to me. That scares the living shit out of me....the fact that when I do sleep I dream about the best easiest least noticeable way to end it all. I hate that I feel like I don't have enough good in my life to want to continue. I know that I do but why can't I see that at these times in my life?? I'm not gonna take her up on her offer to get conseling because last time I did it only made me worse. As far as antidepressants go I have maxed out soooo many of them as I have been on sooo many for sooo long. I know that something has to change. I know I need to talk to someone I should proably start with my husband he is go great with me when I get like this. I just don't wanna scare him because I'm terrified to say the least. I used to be able to talk to my mom at my rough times like this and she would calm me down enough to talk to Quorry about my trying times like this. Lately though it seems as though I'm nothing but a bother to her and I know it's not just me in that aspect my sister says she feels the same way with my mom lately....So I guess I just feel all alone and that is scary at a place in your life like this to say the least. I also know that my kids need me...yet I feel as though they are more of an adult than me right now. I feel bad because I've been crying soooo much in front of them which I know scares the hell out of them Brad and Kay come up to me and hug me and ask me if I'm ok. What in the hell kind of parenting skills are those??

Why do I do this to myself?? Do I WANT to be depressed or what?????

2006-05-19T23:04:00.000-04:00

My girlfriend Sherry called me a couple weeks ago and invited me over to her house for a lil "party" tomorrow night. We were just gonna eat have a few drinks and be 2 stay at home moms releasing some stress. Sherry was a good friend of mine all through school. She lived right up the road from me probably like a mile we would walk and meet each other half way all the time. We both went through our "school pregnancies" together. So we were pretty tight and she saw my mom at the race track about a year ago and asked for my number, my mom gave it to her and we have been talking since. We haven't seen each other since I was pregnant with Gerrott mind you he is 7 years old..so that is a long time. Well I don;t know what in the hell is wrong with me I ( like a fucking idiot) called her yesterday and told her that I could not make it because we had to go to Quorry's cousins wedding. Well that was a lie. What in the hell kind of friend am I to start our reconnection out on a stupid ass lie?? Maybe I'm just too scared to be happy?? Maybe I don't feel as though I deserve to be happy??? Who knows because in all honesty when I am happy I feel guilty almost. Odd I know maybe I need to see a freaking shrink or something?? Who in the hell knows. I was thinking that maybe I will call her tomorrow and maybe figure a way out of the lie because lord knows I need to get out of this house and do something that I enjoy. I can't remember the last time I was out of the house and had a great time. It's been a real long time that is for sure.

I am once again cursed with herpes. A huge nasty cold sore on my upper lip. I get 2 cold sores every year one around this time and one around Winters edge. It sucks. I did find something this time though that works soooo much better than any kind of cold sore treatment ( and A LOT cheaper). It is the Neosporin lip treatment. I woke up with this cold sore Monday morning and it is pretty much gone. Thank god I feel like I'm deformed walking around with this ugly thing on my face.

I feel bad that I haven't responded to any ones comments but like I stated in my last post my hand sucks. So thanks everyone for commenting.......

Why does this damn MS have to affect my (what used to be stronger) right side of my body??

2006-05-16T22:02:00.000-04:00

My hand is sooo messed up. Makes it difficult to type a lot as my hand seems to want to quit halfway through a sentence. It kinda brings back horrible memories of when I was first diagnosed. That was part of the "signs" I had that helped me to get a fairly quick diagnoses. I couldn't even sign my name to my 2 boys permission slips, nor could I sign my own check to pay any of my bills. It just well SUCKED!!!! It seems as though everything on my right side wants to act up and dang it all I hate that!!! Let me tell ya too my left side sure is doing a lot of extra work and isn't likin me using it so much either. I guess I have to look at the strange bright side to this the fact that I am still walking I guess right?? It won't be too long before that won't be happening as every minute while walking it gets harder and harder and I get weaker and weaker.

My mother's day was ok I guess. It was good I did get to have Gerrott for it which was great. I guess the bright side to his Dad having to come to NY for divorce court, child support and custody is that I get to see Gerrott a lot more. It was nice to have him for mother's day. My in-laws had all 4 of the kids Saturday night as it was our anniversary. It was great I was asleep by like 9 and Quorry got to unwind and relax. We went out to dinner and we were both beat as Friday was a long day and night and Saturday was a really long day too.

These last few days I have just been lounging around the house trying to find some damn energy. I think I went way over board today on the cleaning front because let me tell ya I'm feeling the effects of it tonight. My whole body feels like it may just collapse and quit on me...so with that I'm gonna go to bed and try to get some much needed sleep.....

Health update (not that I am in any better health)

2006-05-10T20:32:00.000-04:00

Well last week spoke with my Chemo nurse about what do I do now? I need a doctor to write my prescriptions and well to take care of me and keep track of me and my progression. So I asked Joan (chemo Nurse) what would be my best chance and best doctor for me to see at the MS Clinic? She told me Dr. Bianca Weinstock-Guttman,a dr I said yeah right okay..the reason I said it like that is because when I first became a patient at The Jacob's Neurological Institute Baird MS Treatment Center she was the one that was recommended to see and when I called they said it would be close to a year or longer before I would be able to see her. So I said to Joan how in the hell am I going to be able to see her as soon as I need to see a doctor?? She said well Dr. Garg (my dr. that is leaving) already made it so I was priority patient with this dr. So I do have an appt. with this doctor in August. At least I won't have to fill her in like I'm completely a "new" patient as she has consulted on my case many times so she knows what is going on with me. That sure makes my reservations about this whole "new" doctor thing soooo much less.

Did the 10 day blood work like I have already posted. So Monday I get a phone call from a new nurse at my dr's office who was a lil concerned that my blood and urinalysis came back with a very low white blood cell count. I was thinking DUH you stupid bitch that was my follow up lab work from the chemo therapy..it's a good thing that my WBC is low!!! It made me laugh I had to. She was completely clueless. She said oh I didn't realize this do you know what your base rate WBC is? No duh again that isn't my job that is the offices job to know this info. I know that I should keep track of this info too..But just haven't I guess. She continued with Okay Amanda even for it being the follow up labs for after chemo it is the lowest WBC I have ever seen come back in fact I think that it is dangerously low. Have you been around any one sick or around a lot of people recently? Well yeah let's see I was around about 4,000 people Sunday for the MS Walk. She said you just need to be careful around people. Wonderful!!!! Hung up with her and called my chemo nurse and she confirmed. She did say though that I should be going back up now but to still be as careful as possible as to who I'm around and how many people I'm around. I will have some more follow up labs done next week. I also found out that this supposed "last" dose of the chemo was exactly that SUPPOSED!!!! They want me to do it every 6 weeks again. Ya know I'm torn on this because let's see I was doing 100% better before this last dose of chemo and now feeling so shitty. Do I really want to do this again and feel sooo shitty?? Especially since my kids will be done with school soon?? I'm so confused and soooo incredibly torn. I just don't know what to do anymore........

MS walk is over.......

2006-05-08T21:35:00.000-04:00

Yesterday was the MS walk. I'm soooo glad that I didn't have high expectations that is for sure. First off my day was crap from the second I awoke because I got little to no sleep Saturday night. Yuck!! Then my parents and my mom's friend arrived at my house and the first thing my dad does was start yelling at my husband. What a dick!! He said why weren't you at work the last 3 Fridays? He meant at his shop. Hello Dad Quorry doesn't work for you anymore. Quorry was nice enough to volunteer to help my Dad out on Fridays if he needed it under the understanding that he makes Quorry aware of the fact that he is needed. Well my Dad has not made him aware of this. My Dad can really be an asshole let me tell ya. So I know that when my Dad is in a bad mood it doesn't just ~~poof~~ magically go away. Believe me he has been in my life for 20 years I know him pretty good. So that didn't help the blah from being sleep deprived I was feeling. I knew there wasn't going to be much conversation including me for the day either. You see my Dad has always pushed me in my wheelchair and he doesn't walk he almost runs. So my mom, Kathy(her friend), and Shannon, were all left in the dust if you will. Pretty much the only conversation that I had yesterday during the walk was when my Dad realized he was 10 feet in front of the rest of our team and would stop to let them catch up and then one of them would talk me and I would respond and then off again to be another 10 feet ahead of them. I feel like a selfish little bitch for being a little upset about this I mean afterall he was so nice to push me and all but it just felt crappy I guess. I mean my best friend was walking and I couldn't even talk to her. Maybe if she didn't have MS and could run we could have talked but C'mon. So anyway I want to get off this negativity issue and get to the positive things of yesterday. Our team raised approx. $1,700. Not bad for 5 people now is it? I got 3 t-shirts yesterday the MS Walk t-shirt itself, a Copaxone one, and a Betaseron one. The crappy thin about the "prizes" is the way they keep changing stuff to be worse every year. I'm not in this for the prizes but even still maybe some people are ya know?? The prize sheet they we received in the mail said for how much I raised (which BTW I raised $505) would earn me a shirt and a $50 gift certificate. Well when we went to the "prize" table they only count the cash that you have right there. Well $370 of my pledges were online. I know there were many upset people that is for sure. I guess pretty much the best part of my day was the ride there and the ride back. I rode with Shannon and the walk site is approx. an hour and a half away.

Got more MS news on myself to post but am way to tired to be typing way tonight that sun that we had yesterday didn't help my eyes and of course I didn't have any damn sunglasses...Stupid MS and the damn Optic Neuritis is has bothered me with any way......

Only 4 days left......

2006-05-03T22:18:00.000-04:00

Sunday is my MS Walk. I am not very excited about it at all this year yet I am sorta. First off I'm not doing very well in the emotional/mental health department and I just feel as though my family isn't into this year. My sister quit our team, my mom has gotten 1 sponsor this year and my dad well so far nothing. It isn't so much that I want us (them) to raise a million dollars although it would be nice but it just seems that no one is interested in even doing it. There are only 2 reasons as to why I am going to do it this year first and foremost Shannon, my best friend who also has MS is going to do it with me this year and also because I have raised almost $400. It's almost embarrassing this year as I just found out that last year our team was in the top 5 for fundraising. This was out of the 400 some other teams and the over 3,000 people that walked. So this year there is no way that I see us being even in the top 100. Which is fine by me but as I already said a lil embarrassing ya know?

My goal for this year because I don't do the New year's resolution thing was to walk at least half of the 5 miles. Honestly I couldn't even walk the 1 mile. I'm not sure if I will be able to walk at all. Today was HORRIBLE..the pain and the weakness was off the charts. I had such a hard time even standing I lost count of how many times my legs gave out on me today. It is so scary too when that happens not just cause it's scary but because it always seems to happen when I am alone with the kids.

Just found out today that Quorry may get his old job back which would be wonderful as he would be home more and here to help and see the boys. So now I just have my fingers crossed and pray that it will happen.

Tomorrow is my blood work for the chemo. The famous 10 day bloodwork as day 10 is the day that my white blood cell count is the absolute lowest. I'm no way in hell gonna let them mess with my mediport as it is really bothering me lately. Since it is sooooo freaking hot here my veins seem to look like they would cooperate. This heat has been a killer for me I know that is not helping my MS at all and I think the hottest it has been is like 75. This summer is definitely gonna be the death of me......

So kick me when I'm down I suppose.......

2006-05-02T21:00:00.000-04:00

So yesterday when I got my mail I was very disturbed. There was a letter from my MS specialist telling me that she was sorry but she will no longer be my doctor as she is moving to Boston. WTF!!!!!!I mean I understand her husband had a job offer that he would have been a fool to pass up. So I was very distraught at this fact....meaning I was in tears all day. With BTW NO ONE to talk to about it. I figured I could call my mom and she would at the very least console me...NOPE wrong. I understand she was busy and maybe to "normal" people losing a doctor is well no big deal...But she wasn't just my doctor she was my lifeline if you will. After going through bad neurologist after bad neurologist I felt as though I had found what I needed in her and now that is all GONE!!! I'm scared to death about the rate of progression I have and the fact that now I have no doctor doesn't make that any easier to deal with. Yeah okay there are 3 or 4 other terrific MS specialists at my dr's office..yada yada yada....but I don't know any of them and like I already said I have had a lot of bad luck with neurologists so I'm scared. So now I'm at a loss at what in the hell to do.

On top of all this I feel as though the chemo was a freakin waste of my time. First of all never but once have I been sick from it and I just happen to get the flu that time.Well this time a week later I'm still feelin like shit haven't been able to do much as a mother through the week. Thank God my kids LOVE sandwiches because that is pretty much what they have been eating for dinner for a week. To top this all off I should have known to trust my women's intuition about having the feeling that I just didn't need this chemo this time. Before chemo A much happier able to walk A LOT better Amanda...after the chemo a much more depressed difficulty in walking along with pain Amanda. I'm sure there are many other factors contributing to the depression. I just think that maybe I should not have taken this chemo........

I wish I knew what in the hell was going on......

2006-04-25T22:09:00.000-04:00

I know it has been a little while since I last posted and I want nothing more then to get back to my "old" posting ways..but this damned MS doesn't want that happen!!! Apparently neither does my computer as of late. K where did I leave off last time...Oh yeah how could I forget the horrible pain from the worst needle poke to date and spring freakin break!!!
K I will tell continue to tell a little more about the spring break situation. Thursday was a fine day with the kids they just learned to re-adapt I believe to each other of else God came down and gave me a lil extra help I like to believe both of these scenarios. Also Friday was ok plus it helped that Quorry was here to help me a lil bit too. Saturday we being the kids and I cleaned the yard (back yard where all the toys go in summer time along with trampoline and pool) of Buddy's gifts that he left EVERYWHERE!!!! Let me tell you I used more spoons in the first hour than 5 soup restaurants carry. My legs weren't hurting more than they always do but let me tell you I could feel the weakness creeping and it wasn't slow either. My problem is that when I start a project I do NOT stop until said project is completed no matter the circumstances no spoons or not!!! So now I'm still paying the price..Why do I have to be so damned stubborn?? Can anyone tell me the answer to this question??Monday everything was back to norm on the homefront..kids back in school and peace was restored...Thank GOD!!!!

K now to the horrible pain of that damned poke from last week. First Sheila had to take the tubes of blood to check for the norm things before the Novantrone. That was on Wednesday..Then Thursday I get a call that 2 of the tubes of blood had clotted and were no good and could not be tested and could Anoinette (another one of my home health care nurses) come Friday to get the blood. I told her sure but no way in hell was anyone EVER touching me in my medi-port as the pain was enough to give me nightmares literally!!! She said well I was hoping that you would not mind me taking the blood the ole' fashioned way..I responded with you can blow 25 veins but you are not touching my medi-port!!! So she came Friday and had absolutely NO problems accessing my vein. That I was sooo incredibly grateful for too. So with the blood work being so late to reach my dr's office I knew the that original projected plan was not going to happened as yesterday was the day that I was to get the chemo. Anyway today was the day and I honestly was a closer to getting over the fear of being poked in my medi-port because 1st of all 3 bags of fluid have to be ran to get Novantrone and I was more afraid I think that my veins would collapse badly to all of that hoopla. So hen yesterday Linda (yep another one of my nurses) called and said that she would be here today at 9 a lot of my fears came rushing back. I have only ever had Sheila to be the one to access my medi-port so yeah I was SCARED!!!!I told Quorry that no one was gonna touch me there but Sheila and if she was not going to be the one visiting then something else had to be figured out for the way the chemo was going to be given. Yes I know stubborn and a whole lot of being childish played a big role but you know what it is MS body and damn it I just want to be in some control over MY own body and honestly that is really the only control I can have over MY own body!!! So this morning I woke up trying so hard to have positive attitude over the whole situation as hard as that it is and was and put some of my lidocaine cream over the access spot for my medi-port and figured I would let Linda who by the way had been my nurse for over 4 years and I truly trust her having my life in her hands if you will. Well I'm glad that I got over all the shit about being a "baby" and just let her "poke" me and honestly all I felt was the pressure NO PAIN!!! I again had tears I think maybe because it was a huge stress release and stress and MS well you know are not a good combination. Everything went perfectly fine and I got my chemo. Only bad thing is now I feel like shit feel like I'm going to puke up the hardly nothing that I ate (bagel for breakfast)today and know that I will be awake all night feeling like shit thanks to the damn steroids that are required with Chemotherapy. Fun but just another day in my MS life I suppose......

Never has it hurt so bad that I have cried except for when I broke my ankle..........

2006-04-19T21:48:00.000-04:00

I'm talking about the poke that I received today in my medi-port. I had to have the blood drawn for my Novantrone. Also received my steroids today which is why I actually have the energy to sit here and type tonight. Anyway it felt as thought she stabbed me not with a needle but maybe with a huge butcher knife. I actually had tears poring down my cheeks...now mind you I gave natural birth to 4 children with NO pain medication and the only tears I had for that was when I got to hold each of my 4 precious babies for the first time. Like in my title the only time I feel that I have felt pain that agonizing is when I broke every bone in my ankle. I am just praying my hardest that come Monday when I am poked again it won't be as painful. I will be poked again on Monday as that is the day that I get the chemotherapy along with more steroids and the most anticipated Zofran (which is appreciated because it washes the nasty taste of the steroids out of my mouth as it is mixed with "sugar water" vs. the "salt water" that the steroids are mixed with).

I don't think that this week would have been sooo tiring if it wasn't spring break for my kids. Monday I don't think will come fast enough. Can't wait for the boys to be back in school. All I have heard all week is tattle telling and fighting it is driving me absolutely insane. I think I want to go back on anti-depressants based on the week that I have had!!! Maybe even refill my prozac that I quit taking a year ago. It has been that bad. I 'm pretty sure the fact that I have so much other stuff on my mind I guess I just can't handle all this in one week by myself. That pretty much is what I am too. My husband works so much that I truly do feel that I am a single mom and damn it that is just too much for me right now. I'm at such a loss on what to do with my life at this point in time. I know I definitely need to get out with out my kids for more than an hour. Problem there is where do I go?? The other problem is how in the hell do I get there?? Next problem is what do I do with my kids? I know I have some friends (I believe that they are friends) 3 of them live fairly close even but there is the how do I get there...and what do I do just call them up and say well I really need to get out before I hurt someone either being my kids or myself so do you mind if my crazy psychotic ass comes over to your house with you and your kids?? I'm just having one of those weeks I guess. I'm tiredly exhausted but we all know that when I receive these damn steroids I don't sleep usually for at least 2 nights and tonight probably a most definite as Sheila ( my home nurse) let the iv run WAY too fast and I am wired. it was in and ran in 20 minutes when it is supposed to take at least 45minutes to an hour. She was very apologetic but as I explained to her that is how it used to be ran my Dr. just changed it to this new longer run time.

MRI was worse then the doctor led me to believe on the phone last week.....

2006-04-12T20:50:00.000-04:00

Went to MS Specialist today. She told me that the added drug that would best benefit me would be the Novantrone. I was a lil skeptical as I only have a few lifetime doses of this chemotherapy left before I max out on the dosage. I then questioned as to why this was my best option especially considering aside from this recent little bout of Optic Neuritis I feel pretty good. At least good enough to not feel that I need this drug. She said that my best bet for future health and to be able to stay feeling this "good" would be to do this. I then again questioned this as previously stated I only have a few LIFETIME doses left (don't forget also that I've already minor little bit cardiac toxicity from this chemo). She then said well there are 2 other chemotherapy choices to choose from. I didn't want to try something new that to me I have no clue as to how I will feel as with the Novantrone I absolutely LOVE it makes me feel like a whole new person. So I'm a lil scared to say the least. I will also for the first time be getting it the "proper" way. Where before I would get 1/3 dose every 4 weeks this time I will be getting the full dose every 12 weeks. I am going to start next week and then see the doctor again in 3 months so not sure if there will be a second full dose.So that is all that I have to report for now. I'm extremely exhausted as I have been non-stop since Saturday and am ready to collapse...........

Good news?? Not sure but now know that I'm not crazy I have these headaches for a reason.....

2006-04-11T20:52:00.000-04:00

So yesterday was my appointment with the Neuro-opthamologist. She did a million eye tests too. Some of which hurt my eyes because of the bright lights. The eye drops that she used I sware were either bleach or alcohol. Anyway the conclusion and answer to my blurred double vision is none other than the wonderful Optic Neuritis. Joy. I have had Optic Neuritis before but it was very painful behind my eyes, where as this time I only have pain if you will in my eyes with brighter lights such as the sun or sometimes the television. She told me that was probably and most likely the cause of my headaches. So I guess I'm glad that I'm not crazy that these headaches are for real. I was really beginning to believe that I was imagining them.

Tomorrow is my appt. with my MS Specialist. I'm a little nervous but don't even have the time to stress about it as I have had a VERY busy last couple of days. Saturday was Bradley's birthday party at McDonald's and all 4 of Quorry's brothers came here afterwards. Sunday had to clean up a HUGE mess that 4 boys made mind u all of this brothers with the exception of 1 are over the age of 18. Also went Easter shopping for my kids. Yesterday had my appt. with eye dr. Today took Kaylee to get her hair cut then to dr's as she still seemed to me to have pink eye that would come and go. Found out that it is allergies not sure if that is good or not. Pink eye would have probably been a better diagnoses don't ya think..3 years old with allergies makes me sad. Then had the MS Family Fun night Fundraiser at Friendly's. We made 87 bucks. 87 more dollars then we had yesterday. Next week we are doing it at McDonald's where all proceeds made during the designated time 25% of which go to us. Then doing Pizza Hut the following week. bradley's pre-school teacher came there tonight and did face painting. She is known as Razzle the clown on occasion. She is a wonderful person and she painted Kaylee's face as a lil puppy, Bradley was the /Easter Bunny and Andrew had red MS's all over his face with a tiny lil dog.

I will update more tomorrow after dr's appt. Thanks everyone for bring there for me!!!

Stubbornness?? Stupidity??Scared..YES...WHY did I do this to myself can someone please tell me or slap me??????

2006-04-06T22:59:00.000-04:00

My gosh do I ever sound like a wine ass these last few posts??? Let me explain the title to this post. Got a call today from Marge, the Nurse Practioner at my MS specialists office making sure that I was still gonna be there for my appointment Monday. I said No because my appt. was cancelled and re-scheduled for Wednesday. So she said okay well I'm looking at your MRI from last Friday and frankly I'm a little worried at how much more progressive your case has become. We need to talk about a new game plan..new meds. to add to the Avonex and the monthly Steroids. I'm thinking " Amanda why in the hell did you have to be so damn stubborn about these freakin injections???" " Amanda maybe , no not maybe if only you would have just taken them you would not have heard them words." "Amanda why??You did this to yourself..Now maybe you will learn your lesson??" It's terrifying..there are no other drugs out there that I have not taken that my dr's office offers ok there is Novantrone..but I want to save that as I only have a few more lifetime doses left of that medicine and it is my savior...Do I really want to use it now?? I'm only 26 Fucking years old!!!! this is soooo not fair!!!! I do apologize for my whining. I 'm just so angry with myself. I have been crying all day until Bradley got home from school as I could not let him see me crying. I could not ruin his birthday. So I gathered my composure and went out to dinner and came home put the kids to bed and continued on with my crying..and that is what I am gonna do cry and attempt to go to sleep

I think that I have found the "cure" for my headache.....sleep..sleep..and yep u got it more SLEEP!!!!

2006-04-05T22:19:00.000-04:00

Today after getting up with Bradley at 7:30 and getting him ready for school (ok well he is almost 6 tomorrow as a matter of fact he did dress himself) Kaylee informs me that she wants a drink and is going back to bed. Terrific!!! I can crawl back into my nice reserved spot in my bed that may still be warm next to my husband who I feel as though with this new job I NEVER see. So that is exactly what I did until around noon when Kaylee came to my room and announced "Mommy I'm all done sleeping". Can't complain about that now can I?? I'm not going to say that the extra sleep(bliss) got completely rid of my headache but it sure seemed to make it less noticeable if you will. Then Kaylee and I proceeded with making Ice Cream Cone cupcakes for Bradley's snack for school tomorrow. I used to make these damned things every year for Andrew's birthday at school and am soooo glad that he is happy with me just buying something. Not that I mind baking things for my kids or anything but these damn ice cream cone cupcakes can be a real pain in the ass let me tell you. I bought some Spiderman Cupcake Rings decorations and put them on the cupcakes so I'm sure Brad will be the cool kid tomorrow.

I just bought my washer a lil more than a year ago and today it seems as though it just wants to quit on me. It won't spin at all as it seizes up on the spin cycle. Note to self from now on buy the extended warranty!!! Thank God my Dad is a jack of all trades. He is coming tomorrow to check it out and god willing fixing it for me. I would die without my washer. You gotta figure 5 people living in a house with an OCD mother of laundry that just doesn't go hand and hand. Let me tell ya!!!

I'm so disappointed in myself for this year's MS Walk. So far my grand total that I have collected is a whopping $15 measly bucks!!! I'm soooo disappointed to say the least. I thought for sure that the man who helped make me would donate..but nope of course not even a dollar. I am kind of limited I guess on my options as I guess everyone considers me homebound. It is not like I go out everyday nor do I have the opportunity of having a job to try to collect pledges. I guess I am just feeling a little inadequate today about this whole ordeal. I had asked the NMSS for fundraising ideas and tools and received a paper in the mail with all sorts of great ideas for people who have a freaking workplace. A lot of good that did ME!!!!My MIL and FIL always say that they are gonna sponsor me but never do. My mom and dad obviously won't as they do enough by getting their own sponsors and walking with me. My friend Shannon is walking with me this year (She has MS)and approx. $200. Go Shannon!!!

Feels like forever......life has been to darn hectic as of late...

2006-04-03T22:18:00.000-04:00

Where do I start. K made it through my 5 year day the best that I could I suppose. I think the worst almost of last week was Sunday night I got a headache. Wasn't too bad, but everyday after that is just seemed to get worse. Took some of the migraine medicine and of course it didn't help AT ALL!!! I was thinking that maybe it was my body's way of saying so now you finally after almost 6 months being a stubborn bitch and (stupid) foolish and now you wanna take an interferon with NO repercussions?? I don't freakin think so. That is the only thing that I can think of that brought on such a bad headache which BTW I still have. Oh year left out a kinda pertinent detail..last Saturday night I decided maybe I will finally start back on the Avonex. Don't know why I was soooo terrified. I think a lot of it was all the bad incidents that I had with Reshit oooppps I meant Rebif. That is the only reason I can think of for the fear of doing the Avonex again. Although I know that it doesn't hurt (which it did like a son of a bitch I tensed up waaayyy too much and man did it feel like I pulled a muscle in my thigh) Wednesday I went for my yearly womanly exam which was a little scary as they find some kind of mass on each of my ovaries. So now I have to go get an ultrasound and pray like hell that it isn't cancer or anything to terrible. I guess I don't want to lose my ovaries. Not that I am having anymore kids cuz don't you think that 4 is enough?? I certainly do. I guess my fear is that I am way too young to be going through menopause and the HRT will only add to the weakening of my bones from the constant steroids. I'm trying my damnedest to not fret over it too much because I'm still in a relapse and stress is not gonna help that at all.

Thursday Andrew got the finalization for his braces done. Man did I feel for him. He could not even chew because his mouth hurt so bad. So he lived on pudding, green apple applesauce, and chicken noodle soup all weekend. He was loving that part of it let me tell ya. He looks so cute with them too. Like they were just meant to be there I guess.

Saturday coming up is Brad's birthday party at McDonald's. I really feel for him because I let him invite 4 kids from his class and only 1 of them are coming to the best of my knowledge as today was the RSVP date and I got 1 call and that was today. I do know though that some don't RSVP so hopefully at least one more of them will be joining us. It's not like it will be just Brad and Shannon(the one who RSVP'd)2 of my other kids will be there and so will my niece and nephew. I guess I was just kind of hoping that some of the kids from his class would be there is all. I guess I can look at like this it will be cheaper less kids I have to buy food for right??

Happy?Weird? Scary?Proud? something Anniversary...maybe Congratulations????

2006-03-28T16:25:00.000-05:00

Confusing title?? Tell me about it. Well today is exactly 5 years since my MS diagnoses. I really thought it would be a lot harder to deal with. I guess it just happens to fall at a bad time. It made me think back over these past 5 years waaaaay too much. Made me cray a lil this morning. Quorry said he was proud of me for makin it this far and still pushing..that made me cry too. Guess I am just an emotional basket case. Looking back to a year ago..I was wheelchair bounf and could not walk if my life depended on it, couldn't shower by myself. So I guess I am doing better than I was a year ago. Although I am not to far away from being the same as a year ago.

Got me thinking too about this years MS Walk. Like every year me the one with MS gets shit for donations. Guess being what I called homebound doesn't make it any easier. Shannon my good friend with MS is walking on my team this year. That is great!!! She has close to $200 almost..Proud of her. She just now after 8 years with MS decided to let everyone truly know about it and one of her ways to do that is to walk with me and my team in the walk this year. I'm excited!!!!My goal (as I don;t make New Year's resolutions) for this year my ONLY goal was to walk in the MS walk this year and so far looks like that isn't gonna happen. Made the same goal the last 2 years and the last 2 years was in my wheelchair. Damned Progressive MS Anyway!!!!

Relapse, flu,puky kids, sick dog and tired cranky BITCH......

2006-03-23T20:38:00.000-05:00

Nice title eh?? Well that describes what I have been doing since my last post. Where in the hell do I freakin start?? Ok I will start with last Friday night...

Friday--> Took Buddy to the vet because I knew that there was definetly something seriously wrong with him. First because Wed. he puked all over. Then you could tell just by looking at him that he was losing weight. He hadn't eaten since Tuesday either and believe me he is a growing pig of a puppy. Worm swas his problem which is pretty much what we thought.
He was well enought to get his Rabies shot and the other shot that puppies need (have no freakin idea what in the heck that is ).
Finished my steroids with no problem.

Saturday--> Brad woke up with one hell of a fever. Were supposed to go clothes shopping for him as he is a growing boy and needs some new pants as the school ones are already getting too short on him. We also had plans to get his mop cut as he was starting to look like a little girl. He decided that he felt well enough to get his hair cut. We did that and then took Andrew to his father's house.
Got a call from Karla (made me soooo happy) and she and her sister came over. That was nice as I haven't seen either of them in what feels like forever. It felt like back in the day too. Like the 3 of us had never been separated a day in our lives.
Brad came to my room at around 3 a.m. and tells me that he was just puking. Took his temp again and it was only 99. Worries there gone.

Sunday--> Brad's fever is back and with a vengeance. Called the doctor, he says alternate between tylenol and Motrin every 2 hours. After 2 doses of each if fever hadn't calmed down to bring him to the Urgent Care Department. Thank God fever calmed down after doing so and a million luke warm baths.
Quorry kept me up another night when I thought finally I will be able to take my pills and feel safe. He was now inflicted with fever and the pukiness that Brad had just had the night before. Joyous!!!!So of course when I thought I might have a day to try to start down maybe a recovery road from this damned relapse...didn't happen. So this is now like the 5th night of little to none on the sleep department. I bet that was really helping my relpase ya think??

Monday--> Kept Bradley home from school just to be on the safe side. Quorry still sick and needing me more than the kids ever do when they are sick. He stayed home from work and was in and out of the bathroom all day. Brad started feeling crappy again and fever comes back AGAIN!! Called DR. he gave me a few suggestions and then said to bring him to hospital if they didn't work. I wasn't super worried as his fever was only 100.9.

Tuesday--> kept Brad home again. His fever came again. By now I was freaking because I have been a mother for almost 12 years and NEVER once have any of my children kept a fever for more than a day. I have always been able to break it one way or another. So here is my dillema...Andrew has an orthodontist appt. at 9 a.m. to get the start of his braces, Quorry is hardly able to take care of himself, Brad is laying half dead on the couch and I have no idea what in the hell to do???? So I stressed out (just what the Fuck I need during a bad relapse huh??)called Dr. got the info on what to do for and with Brad, got some medicine down Quorry's throat, got Andrew ready for orthodontist, managed to get Kaylee and myself dressed. How you ask..Fuck if I know!!! Andrew got his braces, Quorry went to work (miserable might I add) and I somehow from somewhere got this 5th wind and had the energy to somewhow clean my house. Thank god for my new wheels they are so much easier than the old ones let me tell ya. Quorry shows back up like an hour after he left for work they sent him home.

Wednesday--> Everyone left for school. Thank God Brad's done being sick. So far so good for Kaylee no sign of sickness!!! Quorry still best friends with the bathroom. Me?? You ask? I have no idea how in the hell I am still going. By now I haven't slept in forever and am so tired I am not even tired. Quorry goes to work to only be sent home again. Andrew's poor mouth is all tore up even after putting the wax on the areas that are irritating his lips. He had a hard time even eating dinner. Next week will be worse as it will be the finalization of the braces.

Thursday-->Went shopping as Andrew just informs me yesterday that he doesn't fit into his dress shirt. He only wears this specific one for his chorus concerts. His concert is tonight at 7. So shopping I must go. Hell I needed to go for many other things anyhow. I used almost all my laundry soap washing puky blankets and clothe.,needed more disinfectant spray as I used all of that too. Needed to get soft unchewable foods for Andrew for next week. He will be happy as he would eat chicken noodle soup for dinner every night if I would let him. Also stocked up on more yogurt as he loves it along with all the other kids. Brad informs me that all the kids in his class agree that I am THE coolest mom because his birthday party is booked at McDonald's with Rondald McDonald. Quorry started to feel much better and it looks as though he might work a full shift tonight.

Friday--> Hopefully maybe just maybe I will be able to take care of myself tomorrow cause god know I need it. I need sleep BIG TIME!!! I am the crankiest bitch ever!!!EVen for me I am super cranky.....

Success again (thank god) from this damned mediport.....

2006-03-16T18:28:00.000-05:00

K well Sheila came today poked the needle in and of course no success at first. She then "manipulated" it a little bit and asked if it would bother me too much if she pushed the needle in a little deeper. Reason being is last Monday on my normal monthly steroid dosage we got success right away no problems. Difference between that needle and the 2 that were used yesterday and the one used today was the length of the needle. Remember that I have more tissue at my site than the norm as it is in breast tissue. So once she explained that I said no if it means that I won't have to be poked and prodded again tomorrow. So she pushed the needle in a little deeper (holy shit so much pressure and sooo much pain) but Guess What?? It worked and after the initial pushing in all the way no more pain. Well I was thankful for that but now as my skin is so incredibly sensitive I itch like a mutha. So she called to make sure that I was coping okay before she was leavin for the night so I explained the massive itch effect. She came back and adjusted it the best she could without taking it out. I still itch like a son-of -a- bitch but it will (hopefully) beat being repoked.

I'm of course worn out for probably 1 million reasons. Let's see where in the hell do I start with my bitch session?? I have not gotten much for sleep in the past 3-4 weeks (joyous), I'm in one hell of a killer relapse (shocked?? hell no used to these damn things ....Damn Progressive MS anyway), Of course NO sleep last night (thanks to the steroids), Had nothing to eat (again thanks to the damn steroids and the nasty they leave in my mouth), OH yeah and probably the fact that I have 4 kids and a sick puppy who is no different than a sick kid, the fact that I feel like a single Mother again so all responsibilities of the kids lie souly on me as Quorry really only sees the youngest and the oldest before work. Thank God Tomorrow is Friday and he is off work till Monday. Hmmm..think that is most of my bitch session for today at least.

My sister is coming to steal my daughter for the weekend which will be good for my daughter as she truly is the only one who gets out of the house only when I do and we all know that is close to NEVER!!! She came back from being there last weekend such a happy joyous little girl. I have the opportunity to get rid of all the boys for the weekend at my FIL's but am not going to take him up on that offer. I don't like some of the things he has said to me this week nor do I like the fact the things he has told my children. Things like question your mother's authority..WTF??? They are 11,7,and 5 what in the hell is he thinking?? I think I will be getting rid of Andrew at least as this is the last weekend he has the chance to see his (biological piece of shit) father before I put him jail for not paying child support. So I will probably let Andrew go there. He has not seen him since before X-mas. So I guess that will leave me with only Bradley for the majority of the weekend. That could be relaxing or complete opposite as he could be bored outta his mind being here as the only child. Who know my sister is funny about things she might steal him too.

Well tomorrow is my last day of the 3 day round of 'roids. Maybe by Monday I will be able to enjoy the taste of food???

I had a BAD day (thanx Dave for the site for music)

2006-03-15T22:29:00.000-05:00

Explains my day after I wrote this post 2day and typing is near impossible as hands don't want movement too much.

k maybe I was I was wrong that the bitching about the mediport was over.....

2006-03-15T15:53:00.000-05:00

Well my day (again) started out well shitty!!! The home healthcare nurse that said yesterday that she would be here at 10ish did not show until noon. Ok didn't bother me too much as I had a chance to take my sweet disabled time to finish getting the house cleaned. That honestly wasn't even what started my day out on a sour sour note..let me explain... This morning I didn't hear Andrew get up and was freaking out as he has NY state Math tests. So I got up to make sure that he was up went into kitchen and saw that his bathroom light was on along with his bedroom and hallway lights all on. So I'm thinking good he is up. Well a few more steps into the kitchen and then right on the (brand new mind you) living room carpet I see vomit like 3 little "piles". GREAT. Now I could tell that this was from the puppy. Continued along my way to Andrew's room and saw about 5 or 6 shit "piles" again from the dog. WTF!!! Anywho made my way to Andrew's room to make sure that he was ready to go and continued through the rest of the house to make sure that Buddy didn't make any messes anywhere else. So my day started so grand by cleaning up after the puppy. Just talked to my vet and she told me what to do and to bring him in if he didn't seem any better by tomorrow.

On to the mediport bullshit. So she pokes me which btw doesn't hurt as much anymore like it did the first few times that she poked me. Well no blood return great. She apologizes and "manipulates" it to see if maybe it will have a flow of blood which is needed before it can have anything be pushed into it. Well to no avail. Poked me again and we did get some blood return and she did get some heparin to let her (with resistance) go in. She hooked me up to the 'roids and as we were watching the bag well no drips. It was not going in. So she said ultimately what we do from here is up to you, you have 2 choices A) I can go back to the office and get another Huber needle or B) just start an IV in your arm. Well I would not have minded being poked a 3rd time it was the fact that this thing was going to stay in my chest until Friday that made me a little skeptical about the whole thing to begin with. So I chose to get a regular IV. Damn did it remind me of why I got that painful surgery to begin with because let me tell you my veins were being just as much of a pain in the ass as the mediport. More painful even then previous pokes already today. So tomorrow we are gonna hope for the best and pray that it will work in the mediport.

I was so freaking grateful that last night I got some good sleep finally. I fell asleep a little before 10. Woke up around 2:30 cause man did I have to piss. Of course Quorry didn't get done working till late last night so he came in the door while I was pissing. We said hello kissed and I went right back to sleep. when I got up sooo early this morning and had to deal with cleaning up that mess I was exhausted for the day already at 6 am. So I went back to bed until 7:30 got Brad up and since we didn't wake Kaylee today I went back to bed and set my alarm for 10 so I could get up for the nurse. So how is it possible that I got a good nights sleep and got to go back to bed?? Who cares Karma is on my side today (shhhh so what I had worse mishaps then I had good occurrences, Let me believe what I want damn it!!!)

On a positive health note I have an appointment with a Neuro Opthomologist. GREAT now I can get these eye problems that I have been experiencing taken care of. Yeah for the last year the problems have always been different yet still the same root of evil causing them and now I can maybe get some answers.

I'm excited for this years MS Walk as my good friend Shannon who also has MS is going to be on my team and walking (hopefully I am walking) with me. So as of right now I have 5 people on my team myself included. I know that there are at least 2 more joining. I don't think we will have the 12 like we did last year but even still I'm far from complaining. Shannon has a good start at $50. Maybe $65 not sure so far my team has acquired $65 but since I am not the team captain I can't see who has the money and from who. I will find out from my Mom who is the team Captain. Honestly all I really have to have is 80 same with everyone else that is how you get your shirt. Sounds stupid huh? Of course I want to earn way more than $80 measly bucks but I would like to get at least that much on my own. Seeing how I NEVER hardly leave my house that is hard I can only rely on the people that I sent "sponsor me" emails too. Last year I think myself I earned like 300 so that is what I set my goal for this year. Our team on the other hand more like almost 4 grand. We shall see. I will definitely post pictures here from the walk afterwards. It is so invigorating. I feel for one day a year not so alone as most of the people there are the same as I am. Last year the weather was better than the year before so I'm praying that it will be even better this year. At least I have a different better wheelchair this year. I will feel a lot safer too this one has a seat belt My Dad goes crazy and have you ever been down Buffalo,NY sidewalk? Regardless of how good I am doing I will still need to take it maybe only sit in a lil but 5 miles is a long trek.

2006-03-14T18:29:00.000-05:00

2006-03-14T18:25:00.000-05:00

I give up.....and today is not the day to feel this way....

2006-03-14T17:15:00.000-05:00

Well I am referring to yesterday's appointment of course. Ok to start my day off I was terrified, in more pain than ever and wondering how in the hell I was gonna get to this important emergency appt. That I HAD to make. My mom was not home to take me I'm assuming that she was at work. Quorry could not take me as he had to work (he would have taken me if that is what it would have came down to) so I called my mother- in- law and asked her. She said yeah but tomorrow would be better for me. I said well I have an appointment for 2 today, so she said yes and that my father in law would watch Kaylee and in case we weren't gonna be back for the boys he would come here and watch them till we got back. I already knew that we were not gonna be back for the boys as Andrew gets home at like 10 to 3. That is a whole different issue with Andrew and my FIL. I will explain in a bit. Anyway Quorry's Aunt Kelly was gonna go with us to the doctor which that's cool someone else to chat with on the way. Anyway we get there and I'm called back. The usual blood pressure, weight(which I got bitched at again because I lost 7 lbs again it has been 2 months since I was last weighed), questions like why was I there and the timed walk they make me do. Then the doctor came and pretty much asked the same questions. She spent a lot of time examining my eyes which definitely scared the living piss out of me!! She then did the normal Neurological Examine that I could probably be hired to do as I'm so familiar with it. She said it was way bad compared to the last one from January. In January I had 95%strength in both sides of my body of a normal 26 year old. Yesteday my right side was 98%weaker than my left side and my left side wasn't too much different than before. She wanted me to get an MRI yesterday which would have been great I could have gotten some uninterrupted sleep. She also wanted me to get an EEG and a visual response test. Great I can now get the correct treatment right?? WRONG!!DEAD WRONG!!!

Before I was called back to the examining room my MIL's "friend" called her and said that once again her husband beat her and she was at my MIL's house and hurry home please. So I had to make all these stupid bullshit excuses as to why I could not get any of these tests done that hello duh could have told me and the dr. that maybe steroids would not be enough. I promised myself that I would not let her do this again. She brags and says blah blah blah ooppps sorry that translates to " My family comes first", yeah BULLSHIT!!! I'm sorry that her "friend" which by the way if only she knew the shit that this "friend" has talked about her in the past and the things that she has told her husband she would probably be floored. Anyway I'm sorry that her "friend(s)" are soooo much more important than family. Of course she will deny that but in the past few months alone she has proven the complete opposite to me!!
I of course feel selfish saying all of this!!! But she said that she would help me through my rough times and well all she did for me yesterday was help me have rough times. I wish that she would have just told me no to take me to the doctor rather than take me for basically no reason. Honestly I did not find anything out while there that I didn't already know. I knew before I went that I was heading in for on hell of a relapse. Basically that is all that I found out yesterday due to the fact that I could not get any of the appropriate testing done. So for now it is another 3 days if steroids and to call if things proceed to get worse, if I pass out again and if my sleeping does not get any better or if my appetite does not get any better. I could tell by the way the doctor was she wasn't telling me something but I wasn't asking any questions as I was tired, in pain and down right exhausted. I did however get the call today that maybe I should get a treatment of the chemo. I'm so happy that they are giving me this option as I LOVE the chemo I feel like a normal person afterwards. They are going to decide based on results. From what I was told today things are only going to get a lot worse way before they get even a little better. Story of my life eh? This feels sorta like deja vous. Almost a year ago the same thing happened almost exactly to a T. but whatcha gonna do??
The way I am looking at things right now my family can go fuck themselves (another selfish moment??) I am there when they need me to be. I keep my MIL's secrets and believe me you she has many. Same with my FIL. yeah maybe that is different then doing the physical things but what do you want from someone who can't even walk to the bathroom by herself??

Ok now onto my FIL he thought it would be ok to let Andrew stay home by himself for an hours or so because and I quote " he is 11 years old he is old enough and mature enough to be home alone for that long". Ok maybe I would agree if A) Andrew showed some responsibility B) Old enough my ass he is 11 years old for christs sake!! so my FIL and I had a little argument before I went to dr. Then my MIL's Blazer started acting up again and because my Dad fixed it, it was all his fault in my FIL's eyes. And let me tell you he made sure that I knew that. If he wants to talk shit about his mechanic well power to him but his mechanic is my Dad so don't talk the shit to me. All I would have to do is call my Dad tell him all the shit that my FIL has talked about him and all the bad things he tells everyone else about his experiences and my Dad would be DONE with them. I would put more details in here about it but my MIL reads this so I will not.

So anyway my day was wasted yesterday..and every day when someone with MS is like this makes one hell of a difference....

Don't forget Today is MS Day of Hope. Join people across the country in the fight to end MS. Learn more and get involved!

okay Tysabri (regardless the "possible" bad effects) is sounding like a great idea.........

2006-03-13T09:48:00.000-05:00

ok let me explain this. I have these new symptoms that are terrifying me, I have never had anything this scary before. I have a very hard time even talking and have these bouts of blurred vision right after the talking "spells" occur. Ok so Friday when it started I thought yeah well no big deal it will be gone tomorrow. WRONG. Saturday it was a lil worse where the spells came roughly every 2 hours or so. Then Sunday came and still the same. That is until Sunday evening. My sister was over and we were having dinner and of course conversating. I noticed but tried to "hide" the fact that I sounded like a drunken bafoon. Well then Quorry said, "Amanda, it is getting worse everyday." Now I know that when he points something out it is BAD!!! Mainly because he knows how it bothers me when he does point shit out, I guess it makes me feel like I'm worthless or something, Anyway by the time bed time rolled around I was having these "episodes" roughly every 15-20 minutes. That is scary!!! So this morning I got an emergency appointment with my MS Specialist and I see her at 2. Gotta love a place that gets you in right way when you need huh??

On a good note well maybe good is a weird word to use but all that came to my mind...Please don't forget that this week is MS Awareness Week. So please if you have a MS Hope bracelet wear it, a MS ribbon of hope wear it , an MS magnet put it on your car, and MS Walk t-shirt wear it!!! We have to let the world be aware of our disease so that maybe many more will help us in this fight!!!! I have all of the above mentioned items and today especially considering how shitty I feel I will be doing all of the above!!!! Also I signed up for my 3rd MS walk today!!! It just kind of saddens me as it looks like this will be yet another year that I will not be able to walk in it!!! Last year I was real bad off at this time so of course by May I wasn't doing any better. At any rate if anyone would like to pledge me here is the link to do so. I hope that everyone does something to help us raise money for ourselves..whether it be by pledging someone or by doing an event yourself.

To Tysabri or not Tysabri..that is the question....

2006-03-08T21:35:00.000-05:00

Deutsche Bank Securities upgraded shares of Biogen Idec to "buy" from "neutral" as the research firm anticipates better-than-expected labeling for multiple sclerosis drug Tysabri.
Earlier today, an independent advisory panel unanimously recommended Tysabri return to the market in some form. In addition, the 12-member committee voted 7-to-5 in favor of Tysabri as a first-line treatment.
The Food and Drug Administration is not obligated to follow the panel's vote but historically acts in concert.
"While we would expect Tysabri to be used predominantly as second-line treatment, the importance of opening up for first line use would allow physicians flexibility to use Tysabri in more difficult-to-treat cases earlier on and allow faster penetration into the non-responder market," wrote Jennifer Chao of Deutsche Bank, in a report sent to investors on Wednesday afternoon.
Chao raised the price target on Biogen Idec (nasdaq: BIIB - news - people ) to $63 from $38. She expects the FDA to approve Tysabri by late March and projects 2006 and 2007 sales of $125 million and $325 million, respectively.
Tysabri was pulled from the market by Elan (nyse: ELN - news - people ) and Biogen Idec in February 2005 after three patients developed a rare brain disorder known as progressive multifocal leukoencephalopathy, or PML. Two of the cases were fatal.
The analyst said a critical factor in determining the scope of potential Tysabri treatment will be the safety monitoring system planned by the companies.
"We continue to be watchful of a likely extensive 'risk minimizing system' for tracking safety and clinical events which could as a gating factor to treatment," the analyst said.

So if possible do I take this drug?? It is quite the scare but on the same note I have taken my risks with the Novantrone and have heart damage a little bit from it. What in the hell do I do if this drug is an option for me???
On a side note here is a pic of my 4 kids not the greatest because it is on a floppy but once I get the actual pictures I will post more of them so they at least are decent pictures.

Wow feels like it has been forever since posting here...

2006-03-06T21:35:00.000-05:00

Wow!!! I have been so busy in a lot of different ways but looking back at the past week or so it doesn't seem like it but let me tell ya my body sure as hell feels it BIG time!!!! I got Gerrott on Thursday had to take Kaylee to dr. on thursday also. Went for family pictures on Friday, had b-day party on Saturday, drove to Pennsyltucky ad mdmhvonpa would call it..(LOL). What a ridiculous trip that was. Have done it a million zillion gazillion times but this time we were excited because we found a shortcut which if the truck we were driving wasn't bein an asshole we would have made our normal 6 hour trip in like 3.5 hours. I mean we still made it under 6 hours but still my legs they were not liking being cramped and not able to stretch at all!!! Oh yeah and mdmhvonpa I got off the exit on 15 right before the Turnpike. So I sorta feel your pain man was there a lot of traffic. I'm sure it probably was a different area maybe from where you normally speak of. My son lives in Elizabethtown which is maybe (the roads and the way we took) 15-20 min outside of the capital. I like PA roads better than NY's though they are sooo much more of a smooth ride.

DAmn it we are definitely plagued by Congunctivits in this quatantined house. Now Kaylee has it and that scares me I do not need more health crap nor more freakin meds now do I???? Speaking of meds I got my steroids today and told the nurse that I am done with them they don't do anything for me anymore but keep me awake for days which I've already been up for days and days with 2 hours sleep here and there.

I am gonna put the picture up on here of all 4 of my kids together. It is not the greatest as it is on disk, but when I get the actual pictures I will post more..but sorry there will be none on here that contain me as I looked like shit(doesn't everyone think that about themselves in a pic??)

Sorry that I'm not posting too much I'm tired and wired all at the same time and wanna get up and do my normal scrub everything ins ight taht I do on steroid day. Will get back into my normal bitch modes oopps I mean normal posting more often. I hope everyone is doing well and wish ya luck!!!

Why do some of the lil things really stay hard and deep in your mind??????

2006-02-23T21:05:00.000-05:00

I am a member of my space. Nice little website. Well yesterday Amy a very "old" good friend from high school emailed me on there. I was so overwhelmed with excitement. I then went to her my space page and saw some of the friends that she had on there. One of which just happened to be my best friend from 6th grade until about 4 years or so ago. When she was 16 (Karla is her name BTW) she was having very big issues with her mother and her mother's boyfriend. Anyway she moved in to my home with my parents siblings my son and myself. It was every girls dream to have her best friend living with her at 16!!! Anyway we stayed talking even after high school was over and college. She had been to my home met my hubby everything. Well the last time she was over (with her boyfriend for the weekend) I loaned them a measly 20 bucks and never really talked to her again. I guess most of it must stems from her maybe feeling guilty for not paying it back. C'mon now 20 fucking dollars over a forever friendship?? Her boyfriend (Andre) was not a good guy at all she had a miscarriage of their baby because he beat her so bad. I just cried and cried all night. I didn't even really sleep much either. I know is probably stupid. Maybe even childish. When do we get friends like that again in life?? Ever?? I have great friends on the net that I think I would die without having them to vent to but you know some times you just need real people. I feel foolish. Again Childish pops into my head A LOT!! I am at a loss at what to do with my life in situations like this sometime but I guess I get over it. Honestly the only person I really feel like have lately is Anna (my mother in law) I can talk to her about anything!!! My mom who has been my best friend forever just seems soooo distant to me. She seems like when I call I am a bother to her. So I just don't call anymore, I don't know about this friend shit anymore?? Oh well such is life I suppose??

You should see me. I am covered on bruises. They didn't show as much yesterday but man did I feel them. I passed out again. Just like last time I felt it coming on so I sat down this time thinking this will pass. Something passed..me I passed out onto the floor. Kitchen fucking floor again btw. I have a nice bruise on the bridge of my nose and man does it hurt and I have a ver nasty looking kinda bruise on my arm. It looks like Quorry beat me. My forehead doesn't have a bruise but man does it hurt horribly.
I should have called the dr. today but didn't only because I had sooo much to do around the house. I am going to call tomorrow because this passing out shit has to be coming on for some reason right??

Tomorrow we have to take Kaylee to get her blood taken for her lead test and then we are taking her out to lunch and then shopping. Then we are going to get her hair cut and then going to get new cell phone for Quorry at Radio Shack. Then to Blockbuster for movies. Oh yeah and Bradley has a dr's appt. for his Pink Eye which BTW doesn't look like it ever existed.Thank God for Anna taking him to the dr. then she is gonna take him shopping in the same city that we will be and then we will all meet at Radio Shack and switch kids. I will get Brad & she will take Andrew for the night.

Next Saturday night is my son Gerrott's birthday. He will be 7. His dad is bringing him to me from PA on Thursday or Wednesday. It will be nice we are gonna have a big party for him. Last year the weather was too bad to get him so we just had Andrew and Gerrott's party together. I can't wait......

Everything feels strange and maybe different lately......

2006-02-21T22:24:00.000-05:00

I guess maybe and most likely everything is like this due to the fact that I have to go to bed ALONE. I mean I guess I could stay up until 12:30 but no thank you. I mean I LOVE Quorry and HATE going to bed alone but please remember that I do have children that I have to get up with in the morning. I guess I just have to get used to this, don't really have much of a choice now so I??? I guess that I can't bitch too much as he is home 3 out of the 4 days a week. This week was ok I guess but for some strange reason felt as though we spent NO time together. Obviously Friday was a lil busy as we had to go to dentist. Then my bitchy sister came and spent the night. Let me tell you if seems like I bitch and moan and complain too much well I have NOTHING on her. She comes and I did not want her here wasn't even going to answer the phone the next few times she called but Quorry didn't know her phone number so he did so I had no choice but to talk to her. She said that she needed to stay out here for at least Friday night for some stupid Home and Garden Party. Not my problem I told her but yeah you can stay but you have to bring something to drink for your kids for the weekend as I was not providing as I didn't have enough for all 5 kids for Friday night. I also told her that by the time she got here we would have eaten already so she would have to feed her own kids. Now normally I feed everyone but I hadn't gone grocery shopping in weeks and honestly had nothing to feed children for dinner. Heck we even ordered out for our kids for Friday night. I just get sick and tired of my sister judging me at how she is soooo much better than me and how she does better for her kids and blah blah blah. Now give me your HONEST opinion.....My sister has a roommate because she can't "afford" to get her own place(now mind you her income is about the same as ours), She has no one but her and her 2 kids what I mean by that is she is a single mother of 2 kids both of which have different fathers, oh yeah she is the person who moved into the roommate situation she dose not have the brains I guess enough to do finances. How is that better than me?? I own my own house have a brand new car, no roommates. As far as 2 different kids by 2 different fathers well I have no room to be talking there as I am ashamed to say I have 2 kids that have different fathers. Big difference between my sister and I is that #1 I was 14 when I had my first yeah stupid and foolish I know and Andrews father was 18 I was young and naive. My 2nd Gerrott his father and I were together and he became alcoholic almost overnight or at least that is how I saw it, he hit me once and that was it 1 strike you are out and was not gonna let him be like that to me. Even still stupid reasons but the fact is today I take care of all of my kids even with this bullshit disease.

Yesterday when Bradley awoke him, Kaylee, and I all sat down and ate breakfast. He was saying that he needed a tissue because he had an "eye booger" that was driving him nuts. I got him one and said well you did just get up. We went on with our day. But as the day went on he kept saying mom I got more "eye boogers" and they just won't stop. Then when I looked at him less than 2 hours after breakfast his eye was really red and swollen looking like someone punched him in the eye. As the day progressed he just was looking worse everytime I looked. I called the dr. and got him an appt. for today. He went to the dr. to get the confirmation of what I thought maybe it could be and that was Pink Eye and oh yeah on top of that the poor little boy has an ear infection. I feel sooooo bad for him. He cried both time I gave him his eye drops today. They sting real bad he says. How is this fair for a 5 year old to have to go through all of this?????

Fridays are now Weird to me.....enjoyable but weird.....

2006-02-17T23:13:00.000-05:00

I am definitely not used to Quorry's new work schedule but I think that in a weird messed up way that I sort of am. Fridays it is sooo weird that he is home all night. I definitely don't mind at all but it is just totally strange. Today was weird too as 2 of the kids and Quorry had a dentist appointment and it was weird that we did not have to rush to get home. Well we sort of did but not due to him having to be to work but because of the fact that the weather was unreal horrible. The snow wasn't really to bad during daylight hours (it really isn't too bad now either a lot worse than daylight) but the winds were unreal. They said that some of them gusted over 60 mph today and that was horrible you could just feel it getting to your bones and further. They cancelled school today because of that fact. The kids got their teeth cleaned which they definitely needed in my eyes. I am a freak about teeth. It was Kaylee's first dentist appointment and she did superb. Quorry has to go get major oral surgery at the hospital where my MS clinic is. We shall see how that goes eh?

Tomorrow we are going to the "city" not Buffalo but one a little closer and a lil smaller. We are going to this new store called "Mr. Seconds". We are going to see if they carry some of the things that we want and need for the house. We are also going to Ace Hardware as there are a few things there that we know we can get. Tomorrow at Ace they are having this 25% Bag sale where everything you can fit in a nice size paper bag is 25% off. Good deal in my eyes I guess I am no man so could give a shit less.

Finally got in touch with an Avonex training nurse FINALLY I stress. The idiot when she called said " It is nice to talk to you after playing phone tag all week". ???What the hell was that bitch talking about?? That was the first phone call I received all week believe me as today was the only day that I have even left my house, not to mention I have caller id and an answering machine. Anyway she is coming next Friday at 2pm. I hate getting my shot that damn early freaks me out to thing that I AM gonna get side effects..but such is life I guess.........

At least something went the right way.....

2006-02-15T21:26:00.000-05:00

My day started out pretty good yesterday for the most part. I knew that my new table that we just got was coming , so no surprise when it showed up. It came in the house with no problems (thank freaking God). Also knew that the cable guy was coming to fix my DVR so no surprise when he showed up either. Now here's the thing...My old DVR was sitting on the table in the living room because well it was the old one (only from November) and well it didn't work, the cable guy who was chatty ( seriously the only man I know that could out talk my never ending mouth) failed to pay a damn bit of attention to what he was doing so guess what?? He hooked the old one back up. Well to my surprise it worked no problem and went on with my day. Well after dinner I was in the living room watching Cops with my kids as it is their favorite show (I know I know bad mom..Oh well screw you if you don't like what my kids watch)(my kids were playing BTW!!! Not watching TV) and the DVR did the same shit I called a tech. here to fix...It just decided to shut off and not want to do anything else. This was like 3 hours after the cable guy leaves. So I called the cable company and told them that this was shit and they agreed and said that someone would call me back last night and if not to call first thing this morning. Well of course no one called me back last night so I called first thing this morning,where they tell me that someone would be here next Wednesday to fix it. Ok whatever a freaking week. Seriously though a week with out something I use once in awhile wasn't a big deal aside from he fact that I would still be charged for it. So shortly after I get off the phone with the cable company they call back saying that someone would be here today. Cool I said and thought and was glad that I would not be paying for nothing. Well shortly after that they called AGAIN and told me that someone would be out first thing Monday morning. So I told the lady that I was told Wed., today, and Mon, and she said oh no it will definitely be on Monday. I said ok so will they know not to come on Wednesday?? She said that there was never an order placed for Wed. I said ok whatever have a nice day and continued with my day. Well at like 3:30 the cable company calls again and says that the cable guy was on his way did I still want him to come? Well yeah I still want him to come she says ok as do I and we hang up. Now let me tell you about this cable guy..He was the finest looking cable guy I have EVER seen and he was sweet and gave me a brand new DVR and everything worked out fine.

I have been in Neuralgia hell this week and man is it killing me!!! My legs feel like they are on fire. Been taking my Neurontin faithfully like every 2 hours LOL. I think I took about 2400mg today. Which that is my limit and it helps to take half of the edge off at least. I am 98% sure that my MS wanted me to make sure that I knew it was here thanks a lot thanks to this damn Vertigo. Then I get like almost all the symptoms of a cold except for I am almost sure it is not a cold. So with the 2 combined I'm almost positive that is why my MS gives me a painful reminder call. Like how in the hell was I supposed to freakin forget that I have MS?? I called Avonex to set up for a training nurse to come so I can start taking MS med again. My thing is why should I take a med that will not help me?? Now that is what 6 specialists at my MS clinic say. But since I LOVE to be a pain in the ass I figure why not take it what if they are wrong?? But then I get those days where screw they are right so why put my self through this needle fear phobia hell?? So I decided to let my hubby make the choice as it is too emotionally hard for me to do so. He decided that I will be doing the Avonex shots. Ok fine by me since it is Avonex, not painful AT ALL to me, and added bonus of once a week!!!

What the fu*k?????

2006-02-13T13:51:00.000-05:00

What the fu*k is going on in this body of mine?? Still feelin dizzy not as bad mind you but still feeling it!!!! I really HATE it!!! I can only sleep on my right side now or else I will have to get out of bed and be sick. Thank god my mediport lets me sleep on my right side now without all of the horrible pain I was feeling.

Thursday night I took a Zanaflex because my legs were having muscle spasms so bad it was unreal. I love that I have not taken a Zanaflex in awhile because it helped me go to sleep even faster than normal. Then at around midnight my son Bradley came into my room asking if I would give him some Tylenol as his ear has been hurting and that is all I am to do for him. So I told him to hang on a sec so I could wake up (let me tell ya them Zanaflex pills really had me OUT!!!) and that I would see him in the kitchen in a minute. So I woke myself up more and walked out to the kitchen and grabbed him the medicine and the measuring cup, poured it, gave it to him. I was feeling a little more dizzy by this time only a different kind of dizzy. I told him that I HAD to go to bed and when he was done in the kitchen to turn out the light. Well that was the last part of that I do remember as the next thing I do remember is feeling like the room was spinning and feeling like I was going to black out or something, and then BOOM I did black out and passed out and hit the floor hard. Oh I was soooo scared. Remember I was home along with 3 kids and had no idea what was going on at that point. The next thing I remember is still sitting on the kitchen floor looking at the clock and seeing that it said 12:21. I was relieved as Quorry gets home usually around 12:30. Well usually being the key word here. I thought that I would never be able to get off of the floor by myself as it is slippery when you are trying to get off the the floor in bare feet a t-shirt and shorts, and not to mention the fact that you are not really all there. Some how I got up enough to get to my wheelchair and get myself to my bedroom and right back to sleep I was. It really is a great thing that I was a little lazy this week and left the wheelchair in the kitchen now isn't it?? I am not sure if I was able to go directly to sleep as soon as I hit the pillow because of the Zanaflex or because I hit my head sooo hard?? I don't know. I should have called the doctor on Friday to tell her of this and to see if that was normal due to the condition I am going through right now, but I did not.

What a pain in the ass I have had today. Saturday we went and got a new entertainment center and Friday we set up a new desk for Andrews computer which is in the living room. So I had 2 new pieces of furniture in my living room. Yesterday I cleaned my house really really good and was happy at how it turned out in the end. So today I knew that our brand new side-by-side refrigerator was to be delivered. So My kitchen was clean like normal. My husband & the delivery guy got the old fridge out with pretty much no problems at all. Then bringing in the new one what a fucking joke!!! First of all I was under the impression that Quorry measured everything that needed to be measured wrong.

#1 safety rails on the side on the back porch had to be taken off (Quorry didn't do it the proper way mind you he completely destroyed the railings)to get the fridge up the back porch

#2 Then Andrews desk had to be moved(dealt w/that ok it didn't ruin anything and didn't leave a mess)

#3 They get into my kitchen and GUESS WHAT?? The damn thing did not fit where the hell it is supposed to.

It did fit height wise but not width wise. What a pain in the ass!!! All of my fridge and freezer stuff was sitting on my table and counters needing to be put away. Quorry could not stay and help as he had to leave for work. Again What a pain in the ass. SO he told the delivery guy (who by the way was going to go get one that would fit without a problem) that he would just do some cutting tomorrow after work and it will fit perfect. Again What a pain in the ass!!!!!!!!!

Dizzy forever????? God I sure as hell hope not.....

2006-02-09T21:15:00.000-05:00

Not sure if that even begins to explain my "happiness" of the last couple of weeks. Still I am geeling dizzy with NO HELP!!! I quit taking these damn "dizzy" pills, oh excuse me these damn "you-will-not-feel-dizzy" anymore pills. My reason for all of this is I feel the same with or without them, so the way I look at it is WHY???? I fthey don't really do anything for me why waste my time?? So yet again like a stupid fool the only meds really that I have been regulary taking is my birth control pills and my 1000mg. of Solumed. IV. No haven't taken my Avonex yet. I have stupid reasons too. First the first weekend I had the meds. and was going to take it well guess what ??That was the 1st weekend I started with this sickness crap so that in itself made me a lil scared considering I wasn't 100% sure that this time(Hello Amanda you have been on Avonex 3 previous times with no freaking side effects at all other than a lil muscle weakness the next day)I would not get any side effects. The other and probably main reason for not taking it is I AM SCARED!!! Of what I'm not quite sure?? I know I am afraid of these stupid needles anymore, I think that all the problems I had from the stupid Rebif did not help those matters at all. I mean before the Rebif when I was on Avonex took it every Saturday night no fear, no problem. I even got to relax all to myself on Sunday and my husband was in complete control. So Now I think I might take Avonex up on there offer to have training nurse come show me how to do it all again. See when I first started Avonex there was no such thing as pre-filled syringes, and the last 2 times that I was on it chose to go with the powder form I guess mainly because I have "heard" and read that the powder form produced less side effects. So again that is what I went with. My husband is a lil nervous himself as he is not wuite sure he honestly remembers exactly where to give the injections(I have always just switched from leg to leg as my arms have been to thin to do the IM shots in) So I think maybe tomorrow I will call the Avonex number and set up training. It would have to be on a Friday night for 2 reasons,#1 Quorry doesn't ahve to work Fridays and #2 If by some weird chance I do have side effects well he will be home with me the whole next 2 days.

Okay Quorry being home on Friday nights....He did get a new job pretty much ASAP. I still don't know exactly what he does perse...I just know I HATE it as he works really weird shift. He does though make very good money now and only works 4 days a week. That I like, What I don't like is I feel like a single mother again like I felt before him and I got together (I was a single mother of 2 kids mind you). I guess I will cope it could be worse right?? He could down right refuse to work and we could be on Welfare???

I got my new wheelchair that was ordered forever ago yesterday. It is definetly soooo much better than my last and it fits my body better. What I am not sure about is I ordered to have the "colored" part be like a deep dark metallic blue mainly because it was the closest thing to black that the manufacturer had. Well let me tell you the "colored" part is not blue it is a pretty purple color but even still it is purple!!!! Not sure I really like that but what are you gonna do? This new wheelchair will come in handy soooo much for me too.

I am gonna start my donations thing for my MS walk probably next week. Bradley's school has more then enough money for all things needed and very many extra things for the year so right now the PTA wants any parent with ideas on what the extra donations should go to to come to the next meeting and be heard. I think maybe I will go and tell them about the NMSS and have the money be donated to that. If they say No well then at least there will be a lot of parents that maybe will start thinking of the effects of this horrible disease and maybe at least think of ways that maybe they could help. Gamble's Country Deli the place that I used to work at told me to bring in my pledge sheet and that he (John the owner) would put it on the counter with an envelope and collect money for me but I had to give him a picture of me to go with it. Not sure if I like that as I hate almost everypic of me but it is soooo worth if for all of us MS'ers. I know twice we are "working" at Friendly's Restaurant and we will get so much of the profits from those night for the MS Walk. It will be the same deal for Pizza Hut. I will start getting more ideas as it gets a little closer. the MS Walk this year will be May 7th. I can not wait that is MY day no kids no husband just my day with my mom, dad, and sister and we go do this and always have a grand time!!!Last year we raised around $3,000. To me that is a lot of money and made me feel very good to do so for myself and others like me.......

YUCK!!!!!

2006-02-02T09:40:00.000-05:00

Well that is pretty much all that I can really say. Let's see...Last Wednesday (Jan. 25th) I started feeling dizzy as that is the only way I can describe the feeling that I had. I had no appetite but ate 3 pieces of toast just because all of my docs are worried about how fast I am losing weight. Well about 3 or 4 hours later I made a visit to my local toilet to make a puke deposit. I then was up pretty much all night puking. Finally went to sleep to only wake Thursday morning feeling not the same but WORSE. I then made myself eat a piece of toast just for the main part so I would have something in my stomach to throw up. I was drinking water like it was going outta style, which was not hard as water is my favorite drink. Thursday afternoon I called my PCP to tell her of my problems and that I don't wanna live like this not for one more second!!! She tells me to come in Friday at 2:45(2:45??What the hell is she deaf I am now at the point of wanting to kill myself as it seems as though it would be better then how I was doing). Well Thursday night I got no sleep that I can remember at all as I was up all night just puking out the water that I was force drinking as nothing in the world wanted to go down my throat. Friday when I got to my doctor's office after a very long horrible ride (my husband was driving fine but riding was HORRIBLE!!!) I walked in and puked all over the waiting room floor. Thank God again it was just the water. I was then called back to the doctor's office where I puked again. They weighed me and were very concerned, as since the last time I saw them in November I have lost 15lbs. My doctor then comes into the room examines me from head to toe and says that I do have some fluid build up in my ears and that from what I am telling her and from she sees I have Vertigo. Now I know about Vertigo as this I have had several times but never this bad before. The doctor says it can be caused by many things for me. It can be because of the inner fluid in my ears, the fact that I have MS and it could be caused by a lesion, or could be caused by a virus. Well thanks bitch that is NO freaking help for me now is it??She did prescibe me Meclizine which as of yet has not helped me what so ever..come on now this is for motion sickness!!! I was supposed to call my doc on Tuesday if I was not doing any better so I did. Yes I was doing a lil better still felt like shit though but you know what the dr told me?? She told me it was all in my head!! Yeah you dumb bitch it is all in my head that is where I feel the dizziness!!! It really pissed me off. I am in the process right now of getting switched to the dr. That everyone else sees so maybe he can help me. Maybe I have an ear infection?? Did she ever think of that?? I have and I have been telling everyone..My PCP, my Neurology pple that I see and my visiting nurse. I am just sick of not being heard!!!!

2006-01-30T11:40:00.000-05:00

So so tired....Like normal.....

2006-01-23T12:28:00.000-05:00

I hate this not sleeping crap. It just plain sucks. I really for the most part lately have not been too hard a time falling asleep and staying asleep. Last night just really kicked my ass for today's agenda. The worst of today is that my kids don't have school due to some stupid staff development day. What the staff has to develop and idea on how to teach my kids??? They are just being horrible little boys. They are fighting something fierce, Bradley is just being a rotten little 5 year old brat!!!! He has these tremendous temper tantrums that make me want to beat the living shit outta him!!! It is too bad that I don't..LOL

I got my flu shot today. Finally it's about time don't ya think. I feel it was probably pointless considering the flu has already been passed around here. But I read in the influenza paper that is required to be given to you before the shot that the peak of flu season is February. So maybe I did the right thing...

This weekend was definitely long. Friday night we played Poker with my parents and one of Quorry's brothers and his girlfriend. Drew and Jen were the first 2 out..Man do they need to learn the art of playing poker and real soon too as I believe they (Drew and Jen , Quorry's brother and his girlfriend) are coming back to play poker next Friday night. Saturday night we played poker with Quorry's Dad, his uncle Chris, his aunt Stacy, his piece of shit cousin Reon, and again his brother Drew (who by the way played a way better game then he did the night before). Let me tell you a little about his dad's side of the family..They are pretty much all idiotic drunken buffoons!!! His Dad is an exception to that as are his brothers. His Uncle Chris, and cousin Reon were both soooo drunk Saturday night I told them that if they did not calm their shit down they would no longer be welcome in my home. Well as the night progressed Reon got way out of line, he knocked pictures off my wall, would not keep his hands to himself, dumped his tobacco all over my floor (he smokes those cheaper roll your own kinda cigarettes), got my puppy all riled up. He was really pissing me off to day the least it got to the point that I kicked him out of my house at around midnight. I told him he was no longer welcome at my home. The funny thing about me kicking him out at midnight is Quorry's dad who drove everyone here did not leave my house until almost 2. So that fucking inconsiderate asshole had to stay outside in the cold and little bit of snow for 2 hours!!! Ha ha...10 points for the good guys which would be everyone but Reon!!!!

On a more sad, depressing note...Today is probably Quorry's last day of work for awhile as there is not a lot of work to be done at the garage. That saddens and scares the living shit out of me. I have no idea what the hell we are gonna do on the money front. Yeah we do have money saved in the bank but how long will that last us?? Quorry said he is gonna just find another job, a job that is "legal" (on the "books"), a job that will earn him some income tax money back next year, a job that when he gets laid off he will get un-employment. You know that kind of job. Don't get me wrong my Dad definitely has done right by Quorry, as Quorry has done right by my Dad. It all just plainly sucks. There is a garage that is in our town right up the street that he could get hired at at the drop of a dime. So I'm pretty sure that is one of the places he is gonna go and put in his resume. I mean he went to school for this kind of work. He should not have a problem getting a job as a mechanic anywhere. He is actually going to go take the test to get his New York State Inspection license. Once that is all said and done that will raise his chances at getting a mechanics job by like on million percent. I just wish him good luck in his search for a job that he is interested in.......

I don't like waking like this at all.........

2006-01-18T11:53:00.000-05:00

Horrible start to my day to say the least. Andrew on a normal basis gets himself up for school he is almost 12 years old after all. Well this morning that didn't happen. I don't know the reason for this mishap as I made sure last night that his alarm was set. His bus gets here anywhere from 20 to 30 after 6. When I awoke this morning at like 25 after I thought to myself damn Andrew was unusually quiet this morning. I then got up to make sure he was up, I see that the front door wasn't unlocked, but I did see the back porch light was on (which that is where we let the dog out from)and thought well maybe he let the dog out and then went out the back door. Problem with that was the back door was also locked. I then preceded into Andrews bedroom to see him passed out cold and visiting dream land. I then screamed his name to get up get dressed with lightning speed and get his ass outside before he misses the bus. He said that he thinks he has already missed it. The only good thing about the schools transportation service is that I can call whenever and pretty much get answers to my question questions like did he miss the bus already. While I was on the phone with the bus garage asking if he had missed it ...Guess what the bus went right past my house!!!! I asked the lady on the phone it the driver could stop and my son would come out and she didn't even radio the driver. BITCH!!! She told me that I needed my son to meet the driver at the Town Hall. I said that would be wonderful if I had a way to get him there, I told her I thought that was to long a walk for him. I would have drove him down there it is only at the end of my street after all I can handle that much driving. Problem with that is all of a sudden Quorry decides he wants to park the truck in the garage. What the fuck?? At any rate I was getting weather appropriately dressed to drive him down there when Quorry says make sure you don't hit anything backing out of the garage...SCREW YOU..What does he think I forgot how to drive??? So I was like Andrew you have 10 minutes to get to the end of the street do you think that you can handle it?? He said yes and off he went. I wouldn't have been so concerned except for the fact all this week are the NY State ELA (English Language Arts) Exams..They are the utmost important tests and are sooooo hard for him to make them up. Anyway all is well now with the exception that I'm dead tired and not to pleasant to boot.

Do you ever want company and when you get it you regret it??? I did this weekend.......

2006-01-17T14:11:00.000-05:00

Quorry's brother Josha nd his girlfriend Erin came to spend the weekend with us. It is a normal thing. Problem being is #1 I was only aware of them being here for Friday night and departing later Saturday like before dinner. Well needless to say they once again were inconsiderate and without asking or notifying Quorry or I spent the night Saturday too. On a normal basis I would not mind but I was just crabby and not feeling the gretest. I guess I always feel used when they come here. I really think that they believe that everything in my refrigerator and/or cupboards is for their dining pleasure. I had bought 3 big things of juice for my kids and my self and Erin drink almost a whole gallon of orange juice and all of my strawberry,orange, banana blended juice. I'm sorry forgive me if I am wrong but that is fucking RUDE!!!! It is a good thing that I had just went shopping for groceries so I did have enough to feed them, but even still why is my responsibility to feed them every other weekend???? Not only did that piss me off but it is very hard for me to clean my house as you know the MS shit and all, but they destroy it. My kids are pretty good at picking up after themselves (better then josh or Erin). My house is 90% of the time almost spotless. I am just one of those people that can not stand a messy house. The reason I had 4 kids is so I have free maids!!!! he he Honestly my kids all have their chores even my 3 year old and usually there are no problems getting them to do them. Come on now why can't Erin age 19, or Josh age 21 fucking clean up after themselves?? As far as I'm concerned they are not technically guests anymore considering they have spent the night here at least 20 times and they know where all the bedding and everything else goes!!! So come on why in the hell can't they take care of it????

*** Time to move on before I flip out as I'm sure you can tell I'm super PISSED off!!!!***

Well good thing....Quorry is picking my AVonex up on his way home from work. I really need to look at their website to remind me of how to mix it. I prefer the powder form over the pre-filled syringes. From what I am told the pre-filled give more of the flu yucky side effects. Which to dat in the almost 5 years that I have had MS I only once got the flu yuck side effects. That was from my 2nd shot of Rebif. I honestly think it is because I did it and instead of going directly to bed I stayed up and played poker. Oh my gosh I was up puking all night and sweating to death. I'm very excited to get back onto the Avonex. I think maybe I will attempt to give myself the shots again. I am still terrified. What if though something god forbid happens to Quorry?? Then I'm screwed..who would do my shots??I know I'm reading this as I'm writing thinking damn am I selfish or what. The only thing I'm concerned about if something happens to my hubby is who will give me my shots??? What a selfish self centered bitch I sound like don't I?? Actually the point I was trying to get across was I need to get past this fear and just do it!!! It makes no sense to me?? I did my own injections every day for 3 years..then did them once a week for almost a year and then BAM FEAR hit me badly too I might add!!!

I'm so bummed that I have to start PT again. I mean I know that I don't have to but I know that is what is best for me. I am praying that doing the Physical Therapy again will help me accomplish my yearly goal. I don't do resolutions..I don't want to set my self up to fail. So in like August after I walked all around Niagara Falls ( which oh my gosh was hard , painful, and I was very excited that I could do it) I said if I can do this I am come hell or high water going to walk on the MS walk this year. You see the first 2 well that didn't happen. First year I walked about a mile give or take a couple hundred yards. Last year which was my second MS walk well let's just say that was one of my wheel chair bound times. I couldn't even walk if I wanted to believe me I tried. My feet did not move!!! My Dad did say that if I wanted to walk he would still push my chair just incase I needed it. That makes me feel a lil more comfy with the whole I'm gonna walk. My family really supports me on this. They know how much it means to me. My Dad has pushed me 5 miles both years (1st year about 4).

I've been tagged!!!!

2006-01-16T11:29:00.000-05:00

thanks mdmhvonpa, I love doing these things because honestly I really have nothing better to do!!!!

Four Jobs that I've had:
1. Waitress (first job at 16 years old)
2. Manager of video store
3. Assistant "cook" at a Jewish Camp
4. Assistant manager at one of the local five and dime stores

Four movies I watch over and over again:
1.American History X
2. Wizard of Oz
3.Both Fast and the Furious's (my boys' favorite)
4. Cinderella (daughters favorite)

Four Places I've lived:
1. New York
2. Wyoming
3. Montana
4. South Dakota

Four T.V. shows I watch:
1. American Idol
2. Medium
3. Forensic Files
4. Psychic Detectives

Four Places I've been on vacation:
1. Niagara Falls
2. Yellowstone National Park
3. Memphis (loved Elvis's house)
4.Kentucky

Four websites I visit daily:
1. all my fellow bloggers
2. Progressive Multiple Sclerosis message board
3. MS Facts
4. Pogo

Four places I'd rather be right now:
1. anywhere but here (my kids are fighting big time)
2. anywhere with my husband
3. visting my lil sister in Jamaica
4. visiting my grandparents is S. Dakota
Four bloggers I'm tagging:
1. Dave
2. Jade
3. Brandi
4. I have no idea who else!!! Sorry!!!
Now if only I knew how to properly tag everyone would have an easier time figureing it out!!!! LOL LOL

I could not be happier...ok maybe I could be???

2006-01-13T20:10:00.000-05:00

Well a strange title eh?? today was my neuro. appointment and all went terrific!!! I got my Avonex as I was so dearly hoping for, well at least the script for it. I think it will be in at the pharmacy by Wednesday. I have been having a hard time sleeping again (I really think it is worry more than anything else) so the N.P. that I saw today gave me a script for Trazodone. She tells me it is basically the same as my Elavil so to stop taking that before starting this new one. I told her that I only needed something for sleep not a make shift anti-depressant. Although I did like the anti-anxiety effects that the Elavil had on me.

I have been so incredibly "lazy" lately. I suppose a lot of it is the fatigue, the fatigue I'm guessing is generated by my lack of sleep. the N.P. was a little concerned about how and I was explaining my fatigue to be. I said I have kids that is reason enough for fatigue ain't it?? Another concern she and the nurse that dose the weighing had is that I have lost almost 10 pounds since my last visit in November. I said why is that so bad?? 10 lbs in 2 months. They said it is bad due to the fact that I'm not even trying to lost the weight. So who knows what is wrong with me but let me tell you what I am not complaining!!!!!

It finally worked.....4 PAINFUL pokes later.......

2006-01-10T16:18:00.000-05:00

Friday after I got back from the dentist (and shopping, and picking my son from school) I called Sheila like was planned to get another stab at this efing meddiport. Well she stabbed me the first time with a needle the length of an Avonex needle which I'll admit had me a little scared. Well again it didn't work....Well it sorta did...what happened is at least this time there was some blood return ( I was soooo relieved!!!) but she was trying so hard to get the heparin to go into it, to no avail. She said that she did get a hold of the surgeon (asshole) again and he told her she was doing correctly but that she needed to use a bigger needle. Same gauge (22) only longer and if need be to force the needle all the way in until she gets the right results. Well his brilliant idea did nothing!!! He said if she could not get it that I needed to come back and see him. I told her she must be crazy if she or he thinks I am going back there and waiting 4 hours to get none o my questions answered!!! Anyway...I told Sheila to stab and stab until we got the right results. So she stabbed me again...and .....it worked..FINALLY!!!! Let me tell you the pain of the last 2 stabs was horrible pretty much worse than child birth and/or a broken bone..Believe me have had 4 childbirths and 2 broken bones. She said that the first time accessing a mediport is always the hardest and that from now on should be a piece of cake!!! Thank God!!!!! So now my mind is rested on this mediport issue.

Friday is my MS specialist appointment. It shall be interesting. I'm going to tell them that I want my Avonex back now!!!!! Not that I really want to be on a shot at all but if I have to be (which I know that I don't) I want Avonex!!!! Quorry has Friday off which is great I won't have to take Kaylee with me this time. She gets soooo bored there but is still so patient and good. She has to get that from her Daddy because I'm far from patient.

My fatigue has been so awful lately. I was in bed pretty much all day Saturday sleeping off and on all day. Same thing for Sunday and Monday. Just no energy no desire to get up and go. Hopefully my fatigue will be nice to me on Friday. The halls that have to be walked to get to my dr's office our unreal. At least we get valet parking which is nice.........

Tell me why I got this efin medi port.....Please tell me WHY........

2006-01-05T19:10:00.000-05:00

Well I'm pretty sure the title says all..all without any details might I add!!! So today was the first day of access to my mediport #1 it needed to be flushed regardless and #2 it was time for more 'roids, any way guess where I got my steroids today??? In my vein in my arm!!! My mediport apparently does not fucking work!!! After all this damn misery and agonizing pain I have been in because of this stupid thing!!!! I was in tears #1 because it just would not work #2 it hurt pretty bad the FIRST time she "stabbed" me to access it (which I think was almost completly the fault of my anxiety and nervousness) and #3 because I was stabbed 3 times today before I got my 'roids, and #4 my mediport could not be flushed!!! That there alone is like an open invitation for an infection. That is terrifying!!!! So Sheila my home healthcare nurse said she was going to call the surgeon who did my medi port to make sure that she was doing in the right spot. Which she was 100% positive she was because like she told me is she was not tin the right place there would be no way that I would not have felt it the 2nd time (which btw I didn't feel it at all) and she has over 20 other mediport patients and she has been a nurse for 20+ years. She definitely knows what the hell she is doing. She even showed me what mediport looked like I can't imagine that I would have taken the "stabbings" as easily as I did is she didn't "hit" me in the right place. So anyway she called the surgeon and he told her almost exactly where the "middle" of it was (which I'm under the understanding that is where it it accessed from) and she argued with him telling him that is where she "stabbed" twice with the funky needle to no avail. At any rate the surgeon is and was a complete asshole to her and absolutely no fucking help to me at all. So she is going to come back tomorrow when I call her to tell her I'm home from the dentist to try try again because like I said previously it HAS to be flushed with heparin to prevent infection. So my confusion has now shifted from the confusion of yesterday about medicines to do I keep this good for nothing mediport in my chest??? Do I make sure that this so called surgeon never operates on another patient???? Well I'm thinking YES to both previous questions. The one about the mediport is yes because hmm let's see do I keep this thing in to make sure that I get a horrible infection? No freaking thank you. The one on making sure that he does not operate on another patient that could be challenging but you know what if this mediport truly doesn't work I will fight until my dying day (which if it doesn't work could be sooner than it would have been without this surgery) to see that he does not work on another patient. So hopefully tomorrow it can at least be flushed. Now on a positive note my veins were very very nice to me today only took one try in the vein department!!!!

You know yesterday I think I cursed myself by saying how well I was walking. Oh my gosh my legs hurt really really bad today from the nerve pain. Last night I had muscle spasms horribly for the first time in a long time. Let me tell ya though since I haven't taken my Zanaflex in a bit it really kicked and helped me sleep sooooo good. I so did not wanna get up to get Bradley up for school today because I was so comfortable cuddled next to my warm honey in out new soft and comfy bedding set that we got for x-mas (we actually got $50 for x-mas from his Dad and bought a nice bed-in-a-bag set) this makes like set #7 or 8 that we have which I love cause I just get in these moods and change whenever I want to whatever I want!!!

Nervous,scared, confused....and oh yeah probably a lil stupid.....

2006-01-04T21:37:00.000-05:00

Well am back after a long holiday break. So much has not really happened....Here is the nervous and scared part..tomorrow will be the first time that my mediport will be used. I was supposed to only get it flushed so as to save me from infections...but instead I am getting my steriods. Nervous because this is all so freakin new to me and also the fact that I have to be half naked in order for it to be used. Scared because it is still hurting so incredibly bad and now I'm going to get stabbed in the chest with a needle YUCK and OUCH!!!!! Confused about what the hell is going on with my body. Just promise me that I will not get yelled at for this....I have not taken a Rebif shot since very early November!!! Here's the kicker to all of this Confusion....I'm feelin better than I have in months. I have been able to walk so much better, so much farther, so much longer. It feels so great!!! I know I know..luck?? Right now I'm so confused on what to do. Do I go back on an MS med??? I think I might. I go to the dr. on the 13 th to see how I felt about the hald doses of Rebif. I'm just going to tell them that I want Avonex. It is my body, my decision, and my insurance will pay for the Avonex. So I'm pretty sure that is what I am going to do.......

2005-12-23T18:49:00.000-05:00

Who knew?

Who knew we could all
whether we could walk or not
stand proud and tall
when life has dished us a lot

Who knew there was this place
whether we could read or not
to look our troubles in the face
when life has dished us a lot

Who knew there were others with our pain
whether we could see it or not
that felt so much the same
when life has dished us a lot

Who knew we could bond so tight
whether we have met or not
to have help with our fight
when life has dished us a lot

Who knew we could stop feeling alone
whether we knew it or not
where we could leave our comfort zone
when life has dished us a lot

Who knew we could stop being afraid
whether we wanted to or not
where our best friends have been made
when life has dished us a lot

I knew all along I could make a better life for me
whether anyone believed in me or not
I believed in myself, I did it for me
when life has dished me a lot

I wrote this poem a few years ago after I decided to accept the fact that I had this MonSter. Sometimes when I'm feeling down I read this and try to make my sself better and realize that life has dished me alot but guess what regardless I am alive!!!! Hope you all enjoy..if not screw you!!!! (lol)

Have decided I think?????

2005-12-23T18:17:00.000-05:00

I think that I am gonna start back on the Rebif. I think I can handle it till the 13th of January which at that time I am going back to my favorite injectible Avonex. It is my favorite because #1 it is painless, #2 it is once a week!!!#3 it doesn't seem to interfere too much with my life,#4 I get NO side effects!!!! So tonight will be the first night back on this stupid Rebif shit. Oh joy not really looking foward to it at all.

Tomorrow night we go to my Mom's house and exchange gifts. I always love going there. We used to all spend the night there x-mas night and have Santa come there. That changed when my mom acquired 6 grandkids and another son (my hubby). It was always soooo nice though. i'll never forget my Quorry's first x-mas with my family. He cried so many tears of joy. My mom got him everything that he wanted and he said it was his best x-mas ever. He definitely had a very rough childhood. Hid Dad beat the shit out of him all of the time and you see he was the oldest of 6 boys so that meand he was the babysitter. It was defintely hard on him his borther Zachary had CP that was hard on him trying to be the parent to this poor little boy. Zachary passed away 2 years ago at the age of 12 almost 13. It tore my husband apart. I felt for him so much, the funeral was very hard on everyone!!! So I feel bad sometimes and watch what I say about my childhood. I had that "perfect" childhood. Mom always home when I walked in the door from school and Dad home after work. My childhood was wonderful wasn't beat wasn't made to feel like I don't matter like my husband was. I feel horrible for him. He is doing a great job at being a father. He is terrified that he will be just like his dad and beat the kids. He had never even spanked them I don't thin. I take care of the majority of the discipline. When I am at my wits end I will ask him to step in and help. I just am gald that he is happy now. He says he has the best life anyone can ask for 4 great kids and a great wife.

So I end this with a Very Merry X-mas to all and to all a good night!!!!

Blah blah blah......

2005-12-20T19:23:00.000-05:00

That just about describes my last few days. I have just been so run down and so damn tired. The weather here today is just awful but has been pretty okay for the last week so can't complain too much now can I?? Afterall I do live in Western New York. At least the temps. are supposed to be up for the holidays and the weather is supposed to be great on x-mas eve which is the only day we go anywhere. My first set of in laws come here for x-mas on x-mas day which is nice considering we have 4 kids to drag out. My other set of in-laws we try to get there the day after x-mas so for now that is the plan and the weather is still supposed to be okay and we have 4 wheel drive for a reason!!!!!

I have been feeling pretty good as of late. Maybe the holiday cheer who knows?? I am a little apprehensive about going back onto the Rebif (No damn it I haven't started back up). I guess because this summer I was on NO medicine at all for the MS other than symptom management meds. I felt better then I did before the MS as I am slowly starting to feel now. On the other hand I'm terrified to not take any MS meds. So what do I do??? I hate being the one to have to make life changing decisions like this. The thing is this decision influences everyone in my life lives. That makes it all the more difficult. I was thinking maybe I will start back on the Rebif tomorrow night. I only have to make till January 13th which is when I go back to my Neuro's office and can go back on to Avonex. Avonex is my favorite of the CRABS. Who knows I will let ya'll know tomorrow what I have decided...........

2005-12-18T14:23:00.000-05:00

Just wanted to update a lil......

2005-12-16T15:47:00.000-05:00

I am feeling a lil less pain now thank god. Thought that I NEVER would have relief, but alas have minor relief. I found out yesterday when I got my 'roids that the only way my medi-port can be used is if I take my shirt off. What the fuck?? Or I can wear a button up shirt and pretty much not button it. Hello I'm far from the type of person to wear button up shirts. I am a jeans and t-shirt kinda gal. So I'm pretty pissed at the surgeon for making it this way. I was awake for most of the surgery I heard them discussing the complications and the fact that they would have to move it from the original planned site. I did not know that they were gonna put it in betwen my frekin tits!!! The original placement was supposed to be on my left side right under my collar bone. So tell me how it is not placed about 10 inches further down on me and not on the left either migh I add. But rather right damn in the freaking middle of my freakin chest!!! Oh ok think I'm done bitching..well nope forgot a few important things about the placement of this damn thing. I am a sleep on my right side kinda girl but can't do that comfortably..wait a minute can only comfortably sleep on my back which by the way to me is far from comfy!!! I'm afraid of how it is gonna be to be intimate with my husband. That sucks as it feels like forever since we have made love and I'm afraid to even try afraid of the pain!!!! Oh this sucks so bad!!! K done bitching for today anyways...

Tonight we are having deep-fryed-mania-gain-20lbs night. We meaning of course my family that lives here, my mom and dad, my brother, and my father-in-law. I'm making restaurant style chicken fingers, battered mushrooms, battered mozerella sticks, onion rings and french fries. I'm sure some of us will gain weight what do you think?? Then after we eat we are going to play Texas Hold 'Em again. We have been having "tournaments" for the last 2 weekends. Fun to say the least. I think the earlest we have gotten done is 2 saturdays ago and that was at like 11 p.m. Only reason it ended so early is because my mom had to work at like 8 in the morning. Every other time the earliest was I think 2a.m. It is an addicting game let me tell ya. So I can't wait. I can tell you though that tonight will be a very early night for me I might have to purposely go out at some point. I had my 'roid yesterday and was cursed with the insomnia part of it big time got maybe an hour of sleep?? The good thing about the blessed 'roids is I finally had no problem eating and that was nice!!!! I should probably lay down and take a nap as Kaylee is sleeping.............

I'm just a simple girl from NY......so WHY do I have MS?????

2005-12-16T14:03:00.000-05:00

Why?
Why do they look at me
like I have no name
Why can't they just see me
as a person to them I am the same

Why do I seem different to some
because I can not walk
Why do they think I am "dumb"
I have a voice I can talk

Why me?
Why not them?
why me?
why not her why not him?

I can tell you why
I am blessed by this god of mine
because I am strong the truth not a lie
I'm different from them because I'm protected by the divine!!!

Amanda Sue France
Copyright ©2004 Amanda Sue France

2005-12-14T11:05:00.000-05:00

Yesterday was my follow-up appointment with the surgeon that did my surgery. Okay I guess what they (dr's office) called it was a post-op. appt.. What a freaking joke it was there yet again just like my first appointment there. Had to sit in the waiting room again for like 3 hours and then another hour in the examining room. To piss me off to no end I had a lot of questions and concerns about my chest and after waiting all of that time I didn't even get to ask the questions that I wanted. He came in the room tore off the bandages and I asked him one question he says well that's normal and rushed out the door. Let me rephrase the he tore my bandages off to he ripped them and most of my skin off with it...at least that is what it felt like. I was laying on the table crying..well more like bawling because it hurt so bad I felt it tear the stitches along with the adhesive. It hurt horribly!!! So glad that I am done with this so called doctor. It is nice to have the bandages that I am allergic to off of my skin that is for sure..but the itchiness is far from gone because now I have the itchiness of healing (nasty,gross,stomach turning) scars. It still hurts and I was actually starting to either get used to the pain or the pain truly became less not sure which but didn't care because the pain everyday had subsided a lil more than the day before. then he rips the bandages off and let his intern and the nurse poke at my medi-port site so that they knew what it felt like. SCREW them!!! Why in the hell do they need to know not like they will ever be seeing it on me again or will have the need to use it. So if you can not tell I'm a little pissed off at him and so extremely happy that I do not have to go there ever again.

Today I'm getting my monthly iv infusion of my steroids. Which I usually look foward to but not today. I have noticed that they don't do anything for me aside from leaving the horrnedous mtal taste in my mouth for a few days. I just don't feel like they are working for me the way they used to. I have pretty much for a solid year or better been getting the 'roids every 4 weeks. Before that I would get them every time I relapsed and I miss that "goodness" I felt afterwards. So Happy freaking Birthday to me eh?? WHo the hell wants to get poked and prodded with a needle praying and hoping that they can find a vein for a medicine that you feel doesn't make you feel any better??? I certainly don't. They can't use my medi-port until next week and I am a lil afraid of letting them as it is still sore to the touch of even my shirt on it now that the bandages are off.

On a more positive note I am 99.98% done with Christmas shopping. I have to get stocking stuffers and wrapping paper (Dave you are not the only one slacking on the wrapping part). Then I will be done with my kids. Leaves me only to my Dad and my Brother. Then I am officially DONE!!! Feels nice too!!!!

I've been Tagged.......

2005-12-13T11:43:00.000-05:00

Okay I've been tagged by mdmhvonpa
I need to Name 5 Weird Habits, and then tag 5 people after I'm done. So here goes.....

1) I don't brush my hair for any reason wash, blow dry then go au naturale
2) I scrub my toilet up to 10 times a day sometimes
3) I avoid going outside to the best of my ability as the nature crap drives me nuts!!!
4) I shower only at night unless I leave that day which per #3 I try not to do
5) I do laundry even if it means I have to search high and low for dirty clothes (Ithink I'm obsessed with wash)

Ok I guess my weird habits aren't all coming to me right now...but I'm sure as soon as I post this they will all coming rushing my mind with full force. Now I'm to tag 5 people..I will try my best...as I don't think I know 5 other bloggers that aren't already tagged but I will try...ok just realized that I only know 2 others that aren't tagged already :( (Sorry mdmhvonpa)

Tag you're it..... Jade Brandi

it has got to get better...doesn't it????

2005-12-09T21:33:00.000-05:00

Please tell me that it has to get better. The pain is so unreal. Mostly my fault as somehow someway I "forget" and bend down,bend over, pick up something, pick up someone and then shit I definitely remember. For example I was just giving Kaylee a bath and she was being a lil brat about the whole ordeal and stupid me bent down to wash her hair and bent down the wrong way and way too far and <<>> I was in tears it hurt sooooo freakin bad. Everyone keeps telling me that I should call my surgeon because it should not hurt this bad still. People on my MS Facts message board who have had the same operation. I did by the way call my surgeon on Wednesday to tell him that the pain pills weren't doing shit for me so he told me to take 2...well taking 2 put me in even more pain because of the puking it caused. I see him on Tuesday anyway and he can look at it and hopefully everything is the way it is supposed to be.

Have to go soon really soon and finish up my x-mas shopping. Normally I would be looking forward to that except for the fatigue and the pain in my chest and legs is unreal and I don't even wanna get dressed. Oh wait I only really get dressed when I am gonna go somewhere. Normally I am in "lounge mode". I did get in the shower yesterday got over my fear of the pain from it. I was in for so long used all the hot water. Let me tell you a shower has never been more appreciated. I feel like a real human again. I am now a lil doped on 800mg of "magic pill" and 2 of Darvocet (which I hope don't make me puke and help take away the pain) so I am gonna retire for the night.

Dave if you read this before the jump best of luck to you. Have a great time and remember all the good you are doing for all of us!!!

Can anyone answer my question?????

2005-12-08T12:55:00.000-05:00

Why in the hell did I want this surgery again?? I was unaware that the pain would be this tremendous. The surgeon did inform me that I would be in more pain than the norm. Oh lucky freakin me!!! Why is it when there is a small chance percentage on everything I fall into that grup of people that get the "rare" side effects???? I think I would much rather have my veins blown once a month than deal with this damn pain anymore. The pain pills had me up all night Tuesday, all day yesterday, and all night last night. They were making me puke. It sucked and I had absolutely nothing in my stomach. The last I ate was dinner Monday night because I wasn't allowed to eat after midnight monday or drink. So now all I can handle is some liquid. Food just scares me to death don't wanna be sick again it hurts to much to puke. It hurts too much to even get up from a sitting position..hell it just hurts to move period. I hate it!!!!

It sucks big time also that I am allergic to any kind of adhesive so the "tape" that they have over my bandages is driving me crazy from the itching. I would show pictures but don't wann gross anyone out it looks nasty(plus you can see my breasts on the main insicion LOL) So Tuesday I go back to the surgeons office and get these bandages removed. Right now I feel like a complete scum because I have not showered since Tuesday morning at 2 am. I am just too scared to get in the shower afraid it will hurt and I am not too steady on my feet and when I am up feel as though I will pass out. Eating something will probably solve that problem ya think??

sore as hell that is for sure......

2005-12-06T15:30:00.000-05:00

This is gonna be short and sweet. Just got home from the hospital after surgery. Let me tell ya it hurts sooooo bad. I have 2 incisions in my chest. There were some complications the doctor was having a hard time feeding the catheter through my body. He said I was tough to get through. So just wanted everyone to know that I got it done and that I am fine. Just in immense extreme pain!!!!!

As promised......

2005-12-01T11:30:00.000-05:00

Here is the puppy his name is Buddy. Not the greatest picture but he is soooo cute!!!

Rebif still YUCK.......

2005-12-01T11:11:00.000-05:00

Where to start? Tuesday had my appointment at my Neuro's office with Marge the N.P. She initially left it up to me to choose the next step. Well duh it is MY body, MY health, and MY decision. So I explained to her about the headaches that started just as that, and how they have seemed to progress fairly rapidly into migraines. She asked me if I had that problem while on the half doses of 22mcg. Told her as far as I can recall no it didn't I don't think there was even a headache while on half dose. So Marge said that I could either go back on to the Avonex ( hallelujah) or try the 22mcg doses again ( oh man ). I said well as much as I hate and I mean HATE Rebif, I do trust Dr.Garg with my healthcare and she (Dr.Garg) wanted me on the Rebif for a reason so I suppose that is what I will reluctantly continue with. I told her if I get the headaches with that I will quit. She said ok I will see you in 6 weeks and we will see how things are going then. If by then you are still having the problems with the Rebif we will put you back onto the Avonex. She made me promise her that I would go back into this Rebif shit with eyes wide (and mind)open. So I am going to do my best to try that. She also gave a prescription for Relpax and said that should help a lot too. So we shall see. Last night should have been my first 22mcg shot again and I chose (foolish I know) not to do it. I just want to know that if the half dose does give me a headache/migraine that I can safely take something even if not the Relpax. I can not even take tylenol until after my surgery. That kind of sucks but what are you gonna do??

Yesterday at my Primary Care Doc. was just basically an everyday sports type physical. I could not understand why everyone that works there was looking at me funny until Libby that is her name she is not a dr. but a Nurse Practioner told me why. She said oh Amanda you look sooooo good compared to the last time I saw you. I was thinkin what in the hell is she talking about and then asked her almost those exact words. She said the last time we all saw you you couldn't even walk and you looked very sickly. Then it dawned on me the last time that I did see her. It was only April but I was really bad and wheelchair bound at that time. But you have to remember that was also 5 Novantrone treatments ago too. The miracles of Chemotherapy!!!! So that gave me a lil boost that I needed.

Now onto my mental problems. I think maybe that I am going crazy?? I can only describe it as I am on the edge of the cliff and everyday I am being pushed closer and closer to falling off. I am a wreck but trying to hold myself together. So far not doing that great of a job in my mind. But my mind is sooo messed up right now. Why I have not a clue in the world. I do know that yesterday while in the shower I was bawling which has been an hourly occurrence the last few weeks I asked god to please help me get through this to get some of the things that are bothering out of my head one at a time so I can deal with this before I do something that I might not live to regret. What I mean by that is I have been seriously trying to contemplate the easiest way to end it all..the easiest way on ME!!! How selfish is that when I have 4 beautiful children that need me. I am by the way dealing much better today. In my heart of hearts I know it is because of God. So I took the time a lot already today to Thank him for helping me. I also thanked him last night when I felt as though I was starting to break through this.

As far as the things with my husband. I know that he did lie to me about being at work on Monday. Ok well he works with and for my father and I had called my Mom Tuedsay and my lil brother answered the phone (he also works for my father). I said why aren't you at work he said I'm sick. I said so just Dad and Quorry today huh that oughta be fun. He said well it was just me and Dad yesterday because Quorry called in. That pissed me off soooooo bad you don't even know. Not so much because he called in and did not tell me but first when he "got home from work earlier" I said wow you are home early. He said we weren't busy is all. Hello that would have been the perfect chance for him to tell me that he called in wouldn't it have been?? I think so. Not to mention that he got dressed for work I told him have a good day all the things I do every day. He called in before he even walked out the door and didn't even tell me. Yes maybe to some that is kinda of a stupid thing to be as pissed about as I am. We are married and we are supposed to be honest and faithful to and with each other. Well so far let's see I am so honest it disgusts me I tell him everything and I mean EVERYTHING even stuff I know he could give a hist less about. Also I have been 100% faithful to him never even had a thought or want to be intimate or close to another man. Well he betrayed me in the 2 most sacred ways of the marriage bond. He lied to me about work Monday lied to me for 9 months about sleeping with my best friend. So you can see why I get a little messed up in the head when he is stupid like this. I kicked him out of my house for a while when I found pout that he slept with my best friend, and once I let him back our marriage became very strong and a lot more happier. I know you might not understand any of this but it is true. So now with no explanation as to his whereabouts monday from like 8 until 4 I start to get paranoid and all those hurtful feelings I had when he cheated came rushing back to me full force and I guess really messed me up. So for now I'm not sure what to do with this (shamble) of a marriage..if it is a shamble. I'm soooo confused. I do know that I love him more than anything...........

2005-11-30T09:55:00.000-05:00

2005-11-29T20:53:00.000-05:00

2005-11-28T20:34:00.000-05:00

What is a girl to do........

2005-11-28T15:02:00.000-05:00

Well called my neuro's office first thing this morning just as I said I was gonna do. Well my neuro. is out of town at some neuroloy convention or something like that. So I am going to see one of the nurse practioners. Actually my favorite N.P. that works that. I am just going to tell her what my neuro and I had discussed (which I'm sure is written in my "file"). So we shall see what happens. I mentioned today when I talked to the N.P. that the headaches didn't start until I was on the full dose. Last I saw my neuro. she told me some people need a lot longer on the titration schedule than others. She told me that if I find that I can't handle the full dosage I would be lowered back down to the half dose. To why not Avonex? That is my medicine of choce for sure. Painless and less of a reminder of this MonSter. The depression from the MS or the Rebif which ever the culprit is reminder enough.

Our puppy is so good. He listens so well too. The only problem is the lady that we got him from told us he was paper trained. Well maybe he was there but darn it if he pretty much goes everywhere but the paper. I am fresh out of potty-training school so this should be a breeze. Kaylee said I know how to go pee now mommy remember? I can teach the puppy like you taught me. Sometimes some of the things she says and does just astounds me. pictures to come soon I promise.

It's official..I QUIT!!!!!

2005-11-26T15:06:00.000-05:00

Rebif that is. You see until last night the last time that I did the injection was the previous Wednesday. Mainly just because I did not want to. Bullheaded? Foolish? STUPID? Probably all of the preceding. I was confirmed though this morning when I awoke with a horrible migraine that the Rebif has to be the culprit. My neuro's office told me that if the headaches continue we will just do something different. The different did not mean switch from Rebif to something new either. Different as in different headache medicines. Sorry tired them all and non have worked. My Neuro has phoned in so many headache meds for me it is sickening to me. So I give up I quit. I will call my neuro's office first thing Monday morning and inform my doc of this decision. She will not be happy but what the hell else am I to do?? I just want to go back on the Avonex. I know they are both the same med. only different strengths, different methods of injecting, and more frequency with the Rebif. She can not tell me that I can not go back onto the Avonex, but she can refuse to prescribe it for me. I don't want to sound like a quitter to her. She told me to try it for 3 months that was the initial deal that I made with her when I very reluctantly went from Avonex to the Rebif. I have been on Rebif over 3 months and every injection hurts more as far as headaches and as far as the burn from the medication. It isn't supposed to be like this Or is it??

Well we definitely got more snow. My house got probably 2 1/2 feet of snow Thursday alone. We did get a little yesterday but maybe like an inch. Tomorrow is supposed to rain all day (hello floods) Monday it is supposed to be close to 65 degrees ( hello floods for sure). My yard should be quite the nice soppy mess.

Tomorrow I am getting my flu shot. Hurray. Just what I want another shot that could make me feel like crap. At least my kids will be going back to school on Monday. All she be calm in the house then. Except for we just got Kaylee a puppy for her birthday and man is he rambunctious. He loves to run around the house like a crazy man too. At least I will not have to listen to the boys argue. That is all they have been doing and I could almost shoot myself and probably would have if it weren't for the fact that I am terrified of guns.

Oh yeah my computer crashed. It sucks soooo bad too. Our whole lives were on that thing. We got it to work enough to see the monitor and had to reinstall everything. So we have had a long last couple of days. I am on my son's computer right now because Quorry is still do installing some more of the things that were on there. I lost all of my pictures of the kids from the last 3 years. I even had it all backed up on CD. Much to my surprise those don't work anymore either. You don't realize how much of your life is on your computer until you lose it........

More snow is coming my way......yippeee......(yuck).........

2005-11-21T11:04:00.000-05:00

Like my title states..More freaking snow. Good thing I have no super duper plans. Okay well I did plan on going shopping on Black Friday but not in this nasty weather we are predicted to get. I can get a lot of the deals on the websites of the stores that I would go to anyway. It is supposed to start snowing tomorrow and not stop for almost a week. Now mind you this is what the local weather stations are saying and they have definitely been known to be wrong. So I guess I will have to take what comes. At least I won't have to worry about my children riding the bus simply because they have the entire week off from school. It has its down sides too though. I'm not used to dealing with all of them just got back into the old routine from after summer break. Oh well I am the mom aren't I?? so it is after all my responsibility to take care of MY children!!!

Oh I want to throw one more bitch about the Larry King show in here. I just remembered how they were all saying how a simple traffic ticket was worse than MS!!!! Yeah right what the freak ever. The doctor on that show didn't help with my hopes that maybe someday in my lifetime there would be a cure. If you guys wanna read the transcripts on this show click here. Maybe to some of you I'm complaining too much about it. Let me tell you I just read the transcript it didn't piss me off as much as watching this damn show did. I know that there is quite the bitch session about it on a few of my message boards. Most especially the message boards that the people like me belong to the people with an aggressive and progressive form of this disease. Oh well though what can we do about it but bitch, moan, and complain?? I personally feel that I at least deserve that much. I have been strong about this MS shit for almost 5 years have not really been in that self pity, poor poor me kinda mode in forever. So dammit I deserve it for once!!!!!

Tomorrow I have to go all the way to Buffalo to Buffalo General Hospital which is where my MS specialists office is and where I will be getting my surgery. I have to go all the way there to get 2 tubes of blood taken for my pre-op. testing. That is just plumb crazy if you ask me a 2 hour drive for 2 tubes of blood??? Ironic if anything. The whole reason I am getting this surgery is because my veins are shot!!! They just collapse at even the sight of a needle. I used to have good veins. But almost 5 years of bing poked and prodded and this IV and that IV my veins have checked out!!!!

I am finally going to get my flu shot this week, Good thing that mine was already on reserve because yet again NY state (at least my area) is dry on the flu shot. Guess maybe they need to start ordering more??
Skipped my Rebif Friday night. Not purposely..so don't holler at me. I simply was beat from the long emotional week I had and just almost literally passed out. Quorry said he "woke" me like 4 times and everytime I said no I can just do it tomorrow. He said he would have done it anyway except for I was laying on the arm that I prepped with my new found best friend (the lidocaine patch). I didn't even do it Saturday either. I figured I would just do it tonight. I know I am not supposed to do that but it is my first time since starting this drug that I completely skipped a dose. I have skipped a Friday once before and did do on Saturday. Other than that time and this last Friday I have been right on schedule. I even do it at the same time too.........

Snow is gone and temps have raised almost 20+ degrees............So answer me this........

2005-11-19T14:40:00.000-05:00

Why is this great news not making me feel any better emotionally??? I am trying my damndest to be more positive. I guess I forget how hard it really can be sometimes to be positive. Since I am on focusing on this negative part of me right now I need to bitch BIG about the Larry King Live show last night. I watched it because I knew that again it would be about MS. I have watched every episode of his show that has been about MS since my diagnoses. Well this particular one had Terri Garr on it and man how do I hate thee!!! Sorry Terri but you have got to be the most annoying MS Advocate. She's always saying be positive blah blah blah. Yes we all know easier said than done and sometimes we need to be negative just for a moment to maybe snap back into reality ya know? Then Clay Walker bless his heart but I now longer care for him either. He was saying I agree with Terri we need to be positive. Then he goes into how hard it has been at moments...and oh by the way he did make sure to mention that he has not had a relapse in 5 freakin years. how in the hell has MS been sooo freakin hard on him ???? Even Richard Cohen who is legally blind from MS is sitting here saying be positive. Okay from him I can honestly think okay maybe I do not have this soooo bad. You know Montel Williams has had a very emotional heartfelt show on MS that made me cry. He was promoting his new book about MS so what did I do? I rushed to Barnes & Nobles the very next day and bought the book. What a huge disappointment it was. What a waste of $35.00 if you ask me. Poor poor Montel. Who by the way has not had a relapse in forever. His book made me cry in disgust not pity for him. I'm thankful to him for his MS foundation that he has where he claims all of the money goes to MS research which him having MS leads me to believe that fact. Many praises to Meredith Viera who has stuck by her husband's (Richard Cohen) side for 33 years with this devastating disease. She by the way took Larry King's place last night on the show.

Okay think I am done bitching about MS for the moment. Didn't say I was done bitching though. I was sooooo mean and nasty to my husband this morning. I feel bad. I was asking all the kids to tell me what they wanted for dinner since well me not having the greatest of appetite for months hate choosing dinner. Of course none of them knew so I asked Quorry. He said well let me go outside first and look to see what we have. See my big chest freezer is outside in my garage. He came in with boneless pork chops. Fine by me but wouldn't be by him. The bad thing about this slab of meat is for the most part it is always so dry. I told him that too. I said why in the hell out of all the meat packed into that freezer do you choose this? He says you told me to choose what I wanted so I did. Then I said well I'm not going to cook something that you are just gonna bitch about because it will be dry. Then he says why in the hell did you buy it then? I then explained to him why..blah blah blah...Anyway I was really mean and nasty and was just yelling at him told him that I was just not gonna make dinner at all then. He got into his truck and left to go hunting. He came back like 5 minutes later because he forgot something. I apologized and told him I would make something with these chops so they would not be too dry. All was forgiven. Why? I don't know why he puts up with my shit sometimes. But he does so must be he really does love me. Thank God for that I don't know what I would do without him!!!!

I have still yet to make it to BJ's. Plainly that sucks. There were a few things there that I really wanted and spent like 300 dollars at the regular grocery store the other day. Oh well I still have a lil money on reserve for BJ's. A little is all too. Maybe this upcoming week? Not sure though as my kids have the entire week off from school for Thanksgiving break. I know that Tuesday I have to go to the hospital for the pre-operation testing. I know for sure that they will be taking blood. Most likely doing EKG and MUGA scan too. See I have to have cardiac clearance for the surgery to get my mediport. My heart was fine perfectly normal on my very first MUGA scan but I'm afraid that the Novantrone made its mark on my heart. I am hoping for more reasons than my upcoming surgery that my heart is still at least stable. We shall see.......

How is waking up to THIS supposed to help my depression?????

2005-11-18T12:52:00.000-05:00

This winter is coming way too early!!! The freezing weather always puts me in a down mood. So I wonder how in the hell I am gonna handle my normal down mood on top of this depression shit. I guess your guess is as good as mine!! It could have been worse for me I suppose weather wise. There were a lot of other towns that got FEET of snow that is crazy. These temperatures are freakin crazy. Too cold to say the least. I think that I may finally give in and call my neuro's office to get some antidepressants..some that may work for me without causing these horrible feelings that I have had on the last few that I have been on. Guess I will just have to wait and see....first have to try to get a hold of my Neuro then getting a prescription should be a piece of cake.

Just got off the phone with my sister-in-law and man is she a bitch. Laughing at the fact that it is freezing here and that there is snow on the ground. See she lives In Hollywood, CA. She was here last year shortly before x-mas and she says she will never come here in the fall or the winter ever again. She was also here in August and was complaining that it was too hot. She is just like me the weather is never good enough for us I guess, My MIL is going there to visit leaving on the 1st of December. Lucky Lucky her.

I have this dilemma for my daughter's birthday party and plainly it SUCKS!!! See Quorry has 4 brothers one of which is only 6. Okay now his brother Josh and his girlfriend Erin come here all the time from Buffalo to visit and hang out. Remember we are still young so yes we do still hang out..I mean I'm 25 and Quorry just turned 24. Anyway his brother Shawn has a girlfriend oh excuse me fiance Ashley. Well Shawn and Josh got into a fight over stupid shit and Ashley claims that Josh punched her and scratched her. Ok he did put his hand through her windshield. She then called the police and pressed charges and put a TRO on him. So now Josh is not allowed around Ashley. Which sucks because his mom and dad won't even let him at their house. This crap is ridiculous. Brothers should not let a girl get in there bond of brotherhood..but they did. So my dilemma is this I would like for Shawn to come to Kaylee's b-day party and Shawn isn't allowed to go anywhere without Ashley. Shawn is the only one aside from us with children he has a beautiful daughter Jenna (not with Ashley) and Kaylee was at Jenna's b-day party. So of course I want Shawn to come with Jenna and like I said he can't go anywhere without Ashley. Josh and Erin like I said come here ALL the time!!! Erin absolutely adores Kaylee and you can see that Kaylee feels the same about her. This may sound selfish or even materialistic..but Erin has spent gobs of money on Kaylee's b-day presents. So it definitely would break her heart if she wasn't invited. So I did invite Josh and Erin last night. Now my next call is to Shawn telling him that he and Jenna can come but Ashley can't because Josh will be here and SHE will be the one breaking the TRO if she comes here knowing full well that Josh is here. At least Quorry's other brother Andrew is definitely coming also with his girlfriend and her son Jeffrey. So I know for sure that 2 of his 4 brothers will be here. The 6 year old I highly doubt because his Dad probably won't drive the 40 minutes to come to her party. Oh well even if no one comes I am still having a birthday party for my daughter. I hate that her birthday if only 5 days before x-mas. It sucks for her!! I remember when I was a kid I didn't feel that my birthday was as important as everyone else's because x-mas overshadowed my b-day. Mind you mine is 11 days before x-mas not 5!! So that is why I have had her first 2 b-day parties a couple weeks before her b-day so she could feel like her b-day is special. This year I am having it on December 2nd. Hopefully the weather will make it possible for everyone to come. We shall see..........

I don't think that I like this bumpy bumpy road I'm starting to travel..........

2005-11-16T00:03:00.000-05:00

Strange title I know. The bumpy bumpy road I am speaking of happens to be the road of the Great Depression!!! I am definitely without a doubt DEPRESSED!!! I spoke with my mom about this the other night. She insists that I go back on an antidepressant. Screw all that bull. Everytime I go on one I go crazy and get a little homicidal. I have to be honest that I was very strange and very irate and had homicidal vs. suicidal thoughts on the Wellbutrin XL. I guess the only good that came from that medicine for me is I quit smoking while on it. So now what to do?? I know I have to do something. This crying at any given moment and thinking that everyone would be better off without me is not gonna work! I can't handle this shit another day I think. My husband has been pretty supportive considering I have been so nasty to him. I have my moments where I think why in the hell is he not helping me? I'm not sure if it is my emotional state of mind that is making me think that he is not helping me at all. I don't mean helping with the MS just helping me in general like a man should help his wife the mother of his children. I hate feeling these feelings of almost hate towards him. I HATE IT!!! I know that I LOVE him more than life itself so why do I HATE him at times?? Who knows I know that I have to do something!!! Maybe stop this stupid interferon shit maybe that will help me? I hate doing the shots they still hurt so much and I know that they are the culprit of my distressed emotional state. So what to do? There is no proof that this Rebif is even helping me or is there? I don't know I am sooooooo lost if you can't tell. Which makes traveling down this road even harder. If I knew where I was going maybe I could make it down this road a little faster and easier and intact. At least today I am outta bed. That is a plus compared to yesterday. I know that I have to get outta bed tomorrow as my mom and I are going out shopping. I wish that shopping would make me feel better, but I know that it won't.

I know that I need to shop for a new car to help make this road even easier to travel...maybe one with GPS?? So I don't get completely lost in the psych ward which is where I have almost traveled one to many times.......

How can I be too depressed with a happy beautiful little girl like this?? I don't know but I am!!!

ever seen the movie " The Cable Guy"??......mine wasn't so bad but I'm still pissed......

2005-11-14T16:46:00.000-05:00

Okay last week after the millionth time of losing my satellite signal we decided screw satellite..cable here we come. Okay they have a great deal I can get cable on all 4 tv's in the house for free installation if I go with the Bronze package. Okay sounds good to me and for 3 months get FREE Dvr. Okay whatever don't need the DVR but will accept for the free 3 months. The installer comes today in a rush because he did not leave the office for an hour and a half later than he was supposed to be here. Can you please tell me how that is my fault?? On top of him being in a rush he was quite an asshole too. He tells me that there was never any kids of deal like the one I mentioned to him. Yeah okay then why in the hell would I be saying something like that How would I know all the details about it?? So I was none to polite to him...I know 2 wrongs do not make a right...but Karma sucks and it will be sucky for him not me!!!! So anyway I am going to call the cable company and see what they have to say. hopefully they will not offer me their high speed internet again. I told them at least 50 times I already have DSL which is plenty fast enough for me

Went out to lunch today at Pizza Hut with my MIL and my baby girl. We then went shopping around the dollar stores in our area. Mostly got barbies for Kaylee and a few ohter lil things for my MIL and myself. Tomorrow we are definitely going to make our trip to BJ's and possibly Big Lots and Staples. Hopefully I get better sleep tonight then I did last night!!!

Well December 6th is my surgery date!!! For my mediport that is. What really sucks is that I have to be at the hospital by 5:30 a.m. for my surgery at 7:30. Ok that is fine by me with the exception of the 2 hour drive. So that means we have to leave my house at 3:30 a.m. My mom is going to be the one to take me as Quorry will get the kids off to school and he has to pick his mom up from the airport that day at noon because she will just be gettin home from California.

I felt like crap yesterday. CAll it a lil sleep the night before or the fact that my monthly visitor was here, or the fact that my sister and her bratty kids were here, or just the fact I was in a lot of pain. Either way no matter the reason I did not feel too well!!!! Not feeling GREAT today but better we shall see what tomorrow brings......

THIS JUST IN...IT'S JUST IN...WAIT REBIF JUST WAS A KNOCKIN ON MY DOOR......

2005-11-11T16:17:00.000-05:00

****Please read the previous post then come back to this one....****

I got my Rebif delivered today just as was promised to me this morning. A lot of stress released off of my shoulders. I now know I will not have to miss any of my shots.

This is just in too man am I grouchy I really NEED to get the hell out of my house before I A)hurt my self B) hurt one of the kids (emotionally that is) C)Divorce my hubby who is not even here D) Disown every one that I know because they all suck!!!! (Oh none of you guys reading)
Sorry just really having a bad depressing kinda day!!!Haven't even been able to make it to the shower yet...ewwww and god knows I definitely need one after all the cleaning and sweating I did today with my super steroids energy that I was planning on using to shop. Maybe I can find someone else to get me out of my torture chamber??? what do u think??

Supposed to get the Rebif today....we shall see........

2005-11-11T12:18:00.000-05:00

Called Curascript today to see where in the hell it was because as of last Thursday they called telling me it was time for a refill. Oh yeah I am that stupid to not know that I NEED a refill!!!I guess that is one of the benefits of Curascript as annoying as it can get sometimes. Plus the added benefit of it being delivered to my door it is only an extra $3 copay well worth it with gas prices these days. My hungry bitch of a Durango would eat up like 5-7 just to go to the Pharmacy. Anyway back to the point of this semi-bitch session. I called Curascript this morning because last Thursday they said it would be delivered on Wednesday this week. They said it is on it's way via Fed -Ex and I WILL have it today. We shall see if I don't there will be hell to pay someone is gonna either lose an eye, maybe an ear after I chew it off and let me tell you I pray it is not a gentleman I have to rip a new one because he might lose a much needed accessory to produce offspring who knows?? Remember that I got steroids yesterday so I am super strong..LOL!!!

I got rid of that nasty after taste of Steroids with my coffee I was drinking before, during, and after. I did notice that a good Quesadilla dinner that I make and made last night did not taste anything close to what it typically does. Everyone said I was crazy so must have been the 'roids. I of course got the nice no sleep till Brooklyn I mean no sleep till like 4am and my daughter came in my room at around 5:30 . Mommy I peed. So I had to get her new pajamas and a new pull up. She was doing so good at night until just this week. She has peed every night, where last week made it her 5 week running with no peeing at night. Oh well she is Potty trained at least. So guess I can not complain too much right??

Was supposed to go shopping at Big Lots and BJ's and maybe Wal mart with my MIL today. Was so looking forward to it nice to get out of the house especially when it has been confirmed that I am definitely depressed. But she called me this morning saying she had to cancel on me. It wasn't too heartbreaking as everyone always makes plans with me when I can actually participate and they ALWAYS cancel on me. Then when I can not do things like shopping they will be like well why don't we do that thing that we were supposed to do last week but I canceled on you. That is frustrating but oh well what are you gonna do?? So I just give up on making any plans with anyone.

Steroids today.....only by the grace of Spence and God........

2005-11-10T10:19:00.000-05:00

Well I say that because of this new so called "insurance" more like unassurance to me. Spence the wheelchair guy has been helping me try to conquer this mountain. We spoke on Tuesday morning and he asked me if I made any headway yet and of course the answer was still NO, he said ok here is what you need to do....call Crappy insurance company demand to speak to the supervisor of the super great agent who falsely enrolled you. If you are refused that option call me back because my wife used to work for said insurance company and there for I know people high up the chain of command and you could also get in touch with Eliot Spitzer and you see how fast shit will be taken care of!!!! Well thankfully it did not have to go as far as the NY State Attorney General. I did get in touch with the supervisor and she said that I will be disenrolled as of Dec. 1st. Dec. 1st? are you efin kidding me?? That still poses problems for my upcoming surgery, my wheechair, my steroids, my nurse, and most importantly my REBIF!!!! She said well all I have to do is call her back with the all the details on the Rebif, steroids, and nurse and she will make sure it happens. As for the wheelchair and surgery guess I am SOL at least till after Dec. 1st. Okay so I have gotten the steroids and nurse situation taken care of....but still not a word from anyone regarding the Rebif which by the way I have enough left for Friday and Monday then I'm out completely OUT!!! So we shall see what happens now. I will probably be on the phone again all damn day with Curascript , neuro's office and god knows who the hell else. All I know is if I do not get this refill there will be a phone call to Eliot Spitzer!!!! All of this can not be good for my stress level at all!!!!!!!!!!!!
K well explained Spence's role in my getting steroids now to explain God's role.....

Well you see there was a tornado warning for my county last night. Well I really wasn't that worried as we have had 3 of those warnings in the past 2 weeks. With no tornadoes. Well last night was different you see. I was tuned onto the news like I always am at 5pm and the weather guy says Machias, Delevan, East Otto, and McKinstry Hollow take warning that there is most likely going to be a tornado as the weather conditions are perfect for it in these towns. Now I live in Machias, Mind you where I live is very rural so like East Otto is right over the hill from me Delevan is less than 5 miles and McKinstry Hollow well that is the street next to mine. If I was steady enough on my feet I could walk there. It was raining pretty bad all day and the wind forces have already been horendous for the last 3 or 4 days. So we still weren't too worried. Until we hear this horrible horrible wind, it scared the living shit out of me!!! Then the weather guy comes back on saying we just got an unconfirmed report that a twister touched down in Machias!!! Hello scare me even more why don't you..I mean I live in Machias have 3 small scared kids and a very (thank god) calming type husband trying to protect all of us. Then next thing you know they lifted the warning and everything calmed down which scared me even more!!! You know the calm before the storm crap?? Needless to say I am here I am alive and thanks to God am able to get my steroids today.......(because I am here and alive).......

turkey or Rebif.....hmm..Thanksgiving has so many more meanings to me this year.....

2005-11-08T10:28:00.000-05:00

Last night my husband and I were watching the local news and I heard the reporter say up next after the break ...Turkey and Tryptophan..not just for making you sleepy... So I was like ok cool I'm gonna still finish watching the news who gives a crap about the other stuff turkey can do? It's not gonna help me feel any better. Well what an ass I felt like when they came back on air. They said the same thing not just for making you sleepy..researchers thin it maight help people with MS!!! I was like honey am I hearing shit??He said no..now don't you feel like an ass..and of course I did but was not gonna confirm that to him I am not stupid!!! So Turkey here I come..I love it anyway and I always make the Thanksgiving dinner for my family. So I guess they tried the amino acids in the turkey on mice models and it has some maybe benefits to US!!!

Last night Kaylee was being such a brat she was so extremely tired so that did not help matters at all. I was attempting to read the story of the First Thanksgiving to Bradley and all she would do was kick him and hit him. So I interrupted our story to punish her by making her sit on the florr right next to me so I could control her and continue to read to him. Well she was crabby like I said and she got up and ran around the other side of the couch towards the rocking chair and foot stool. Well like I said she was running and very tired and very pissed off..well all of the sudden she tripped over nothing because there was nothing for her to trip on....anyway she went forehead first into the foot stool and BAM!! I freaked out she hit really hard had a HUGE gooseegg on her forehead with the pattern of the fabric that covers the footstool. Oh I felt soooo bad for her and was so afraid to let her go to sleep. I called her doctor and he said it she was tired before she hit her head it was ok to let her go to sleep. He said to just keep an eye on her. So after I got off the phone with the doctor I put her in her bed and she was out after watching an episode of Dora in her room. I was up all night checking in on her and everytime I did the goose egg was much smaller. This morning the only reminants of the said goose egg bump is the pattern of the fabric on the foot stool. It just looks like some broken blood vessels. There is no doubt in my mind that there is gonna be one heck of a bruise. Poor lil girl. I have a perfect picture of her as an advocate for Copaxone....I loved the Copaxone but since I developed a hypersensitivity to it after 3 years had to stop it. I went to a seminar sponsored by Copaxone and they were passing out sun visors and water bottles and Kaylee wears that damn visor all the time and that is the pic I got of her with the visor on!! Definitely not her best hair day..now remember she just got out of bed and had a very very rough night!!!

I used to know html...what the hell happened???

2005-11-04T16:41:00.000-05:00

Man I have been trying to find a background aside from the ones that blogger offers. I found soooo many that I really wanted one in particular I fell in love with. My problem is I don't understand how to do any of this shit any more. I used to be so good at html but apparently it has changed A LOT since I messed with html crap. Now I just have to find someone who is willing to offer their (free)time to help me. That should be fun. So now I have to missions for the year you see I have already amde my new years resolutions. The first and most important to me is that I am damned determined to actually walk in my MS Walk this year vs. riding in my wheelcahir, next mission and resolution is to get theis beautiful template that I want. Stay tuned because I am sure that I will have more missions/resolutions soon.

So the insurance lady called me today and said that they can't cancel me until December 1st because they do theri insurance in 1 month increments. Assholes because of this crap I will be without Rebif for 3 weeks. That is not good. I know that this could be a mind over matter type situation but honestly since starting Rebif I feel a lil better and stronger MS wise. If it is mind over matter so what it's working. I still despise and dread the Rebif shot itself but I am still doing it. I know that I need to as everytday I'm progressiong more and more and the last thing that I want is to be PPMS or SPMS. PRMS is bad enough if you ask me!!

On a more pleasant note I spoke with Dave for almost 2 hours today and MSN messenger. We both had our webcams on. His accent is very sexy!!!! I have to get my new microphone so I can talk to everyone on either msn or yahoo. I ahd a really good time and really wanted to talk to Dave vs. type. It was a good time though. He is definitely a very sweet guy and very polite!!! Thanks Dave for making my afternoon!!!

I am soooo lost.......

2005-11-03T13:24:00.000-05:00

I got a phone call yesterday from Spence who is the man who came and measured me for my wheelchair. He said you want the good news or the bad news? I said well I am a big girl I can take both. He said that my insurance approved my wheelchair(hooray!!) but there is still an insurance problem. A lady that I spoke with and filled out paperwork with for a new insurance screwed me BIG time. You see I saw her at my son's open house and signed up with a new insurance company she said I have to come to your house next week to finalize everything for your coverage. She said that she would call me that week and see me the following week. Well in the meantime I researched this new insurance and found that they would not cover the home health care nurse coming here to give me my monthly infusions, won't cover my medi-port, I have to get a referral everytime I see my neurologist, won't cover my tubal ligation because it is a Catholic type insurance, won't cover half of my prescriptions. So you see she just finalized everything without my complete approval. It really pisses me off!!! I am due to get steroids (which is one of the drugs they don't cover)(don't forget they will not cover the nurse that does the infusion)sometime next week. I NEED them!!!! I have spoken with a million people from the insurance company explaining what happened and they told me that I have to speak with the lady that did this and tell her to cancel it. I have not been able to get ahold of her as she is not returning my phone calls at all!!! So now I have no idea what the hell I am gonna do???

I've been so not myself lately I am 100% positive it ahs to be depression..I wnet from crying 24/7 to being in the worst of moods with no desire to do anything at all!!! I am having a hard time being nice to anyone. Quorry has noticed more then anyone else..he tries to hold me at night and I push him away. Why? I have no idea I love it when he holds me. I hate feeling like this......

Pics of my kids from yesterday......They are not the greatest......

2005-11-01T19:47:00.000-05:00

This is definitely not the greatest of pictures but my camera wanted to be a pain in the ass yesterday.

oh this is so crappy.....my luck I mean.....

2005-10-28T13:45:00.000-04:00

Well let's see why. My day started out fairly ok aside from being the usual tired and full of pain. My mom showed up to watch Kaylee and the boys(once they got home) and my MIL showed up to take me to the Dr. that will be putting in my mediport. We started on our way found the dr's office without much of a problem. Got there at 3 which is what time my appointment was for, signed in and sat down. The receptionist called me back up to the window which seemed sooooo far away to fill out the usual boring paperwork. So I sat and I sat and I sat to wait to be called back to see the doctor. 2 freakin hours later they call me back. I sat on the examining table which by the way like any other examining table had no supportive back for another 15-20 minutes. By this time I was ready to just get up and leave. It really pissed me off for the long ass wait. Ok so I am a woman very impatient..I want what I want when I want it!!! Am I the only one like this???Anyway the dr. came in the room shook my hand had me lay down on the table. Then he played with my chest. What he was doing was showing me where at in my chest it would be which I already knew. Pretty much everything he told me about this I knew...so I ask why in the hell did I have to go see him an hour and a half away to be told shit I already knew?? The only 2 things he told me that I didn't know were I was going to have to be upside down for a lil bit to get the blood in the vein the correct way and that it was going to be done in his office vs. a hospital. So he is leaving to go on vacation for 2 weeks and then he will be doing this for me. HE told me that it will be 2 weeks after the thing is in before it can be used. So looks like my next round of 'roids should be fun and interesting. Sheila (my home health care nurse) was hoping that she would be able to use my mediport the next time she saw me. Well I was hoping the same..I'm sick of being poked and prodded everytime I get an IV. Oh well one last hurah can't hurt oh wait it will hurt...

Ok that wasn't the only bad luck I had yesterday. I quit taking the Neurontin Tuesday after I talked to my dr's office so I could start taking the Topamax last night. So on my way home from the stupid dr's appointment I stopped at the pharmacy and picked up the Topamx and was on the edge of my seat to get home and take one..thinking the sooner I start the sooner they would work. So me already in not such a great mood (the pain the dr's appt) read the pharmacy brochure and just started crying (again). You see I can't take the Topamax if I don't wanna get pregnant, if I want to continue with the Elavil. That was such a HUGE disappointment to my already bad day. You see I went through all day Wednesday in pain to stop the Neurontin for no freakin reason. I'm yet again disgusted with my healthcare officials!!!!

It's still really cold...but our bellies will be warm tonight.......

2005-10-27T12:46:00.000-04:00

Oh my gosh I am gonna eat all the dinner before anyone even gets home. I made the seasons first chili today in the 'ole crockpot. It smells, looks, and tasted sooooo yummy. Pretty good for the season't first chili if I don't say so myself. Now on to an update of the "snow" we got or should I say didn't get. Ha ha to PA they got more snow then I did...at least 2 counties did anyway. You know the ones that are right underneath of me. Also Ellicottville got a couple inches of the wet stuff ....rain/snow mix. Which I am sure they are loving that too. It is afterall great skiing and a beautiful "city" ( I just don't consider small towns like that cities). I used to work at Holiday Valley for 2 seasons it was great free skiing even. It is a stuck up town thought with lots of rich snobby bitches. Usually once the snow season is over it is a normal small nice town.

Going for consult today on my mediport. Can't wait to get it in and be done with needles with the exception of the you know what jerk needles!!! My home health care nurse told me that if I wanted she could teach my husband and I how to do my solumedrol infusions and that way I could do them at a time that would be more conveinent to me. So I'm not sure if either one of us is up for that challenge right away?? I know that I could do the heparin flush myself if it didn't mean I had to use a needle but it does so there is no way in hell I could do it. I wanna ask a question of you fellow people that do self injections......How long have you been doing it? I don't wanna scare anyone with what else I want to say but I need to know to know that I am not crazy. I have been doing injections for almost 5 years (4yrs. 7months). I did slef injections until last October. I went to do my injection Wednesday night (was on Avonex at the time) and had an anxiety attack. So I calmed myself down and tired againa nd again anxiety attack. My mom then took over for a few a months then it graduated to Quorry who know gives me the Rebif shots. My other question is has this happended to any of you?? It makes no sense to me that a seasoned vet of self inflicted pain Oh sorry I mean self injecting could all of the sudden freak out and literally feel almost scared to death to do it. I was never afraid of needles till then now looking at a needle near me even the Rebif needle in the packaging still scares me a lil. So maybe I am just crazy...If I am then at least I have a reason for all my quirks...if not then I feel a lil better about "babying out" of my own treatment!!!!

Got some exacts on my new drug regimen today........

2005-10-26T21:05:00.000-04:00

My doctor's office called today to give me all the exacts. I am to start slowly tapering off of my Neurontin. Which I have been doing already as I knew I would have to to get a new "pain" med. I am such an expert at meds anymore it seems..as far as knowing how to taper up or down correctly. I have been through more new meds in the last 6 months then the 3years before that. Anyway I will be starting Topamax in like a week. I'm excited about it a lil because they told me not only will it help with neuropathy pain it will help with the headaches that I have been getting. I am going from 25mg. of Elavil to 50mg of it a day and staying on my Zananflex only I am gonna try to take it the 4times a day that I am supposed to. Only reason that I don't is because I have a hard time staying awake during the day when I take it and I have at least 1 kid a day to take care of. So this is the plan and I am hoping that it helps with the pain in my legs at least. Got bad news today...well I already knew the answer to my question but was hoping that I was wrong...No I won't be able to do my Rebif shots through my mediport. Made me sad too..but oh well yet one more brick in my wall of torture form this DAMN Rebif!!!!!!

I think that maybe I am depressed????

2005-10-25T18:29:00.000-04:00

There is so much going on right now. I don't think that emotionally I can handle this. This Rebif all in itself makes me depressed to think that Monday, Wednesday, and Friday I have to be stabbed. The pain from the Rebif has only progressed. Hmmm...it seems like my body likes to progress. My MS is well beyond control my doctor's words yesterday and the pain is unbearable. So now I am working with my doctor on a new drug regimen. Fun wow. If it helps me with the pain I will do anything. My legs feel like they are on fire!! I hate that. If my legs feel like they are on fire answer me why I am still so f-ing cold? Who knows? Not me that is for sure!! Last night before my shot, I cried and cried and cried. Quorry asked what was wrong. I sat there for a minute trying to think of how to answer that...I don't know what was wrong, have no clue why I was crying. Today well the crying has not been much better...been crying off and on all day...mostly the on part of it. I know I should not have any problems sleeping tonight. When I cry and cry it makes me so very tired that is for sure.

I have a doctor's appointment Thursday with the doctor that will be putting my mediport portacath (which ever u prefer)in. This will be nice for my steroids (if I continue). OH and I can get blood taken from it!!!! GOnna ask if by some chance I can do my Rebif through it....

Still rainy and cold and nasty...only difference is it is not the weekend anymore.......

2005-10-24T12:10:00.000-04:00

ugghhh...I hate it soooo much too. I can't seem to get warm. No matter what I do!! So yet again this shall be such a wonderful fun Halloween with 3 kids in this yuck weather. I think it is actually supposed to be much better on Monaday. I sure hope the weather people are right. My weather forecast for this week is SNOW SNOW and yep u got it SNOW!!! I so did not expect it to be "warm" (what an ironic kinda word to be using in said situation)enough for any amount of snow to stick!!!! Why do I have to live in the hills....where we always get the damn snow. You kow what pissed me off? When you hear about our (by our I mean Buffalo,NY) weather or our amount of snow..you only hear about Buffalo. Screw that Buffalo gets crap compared to what we (by we I mean the southerntier)(by southerntier I mean south of Buffalo about an hour or so)get. When I hear on the news (which by the way they don't really tell a close enough point to my location to get even a half assed close expectancy for weather) that they(Buffalo) got 2 or 3 inches...it is like so what I got 6-7 inches!!! Screw this big cities are everything small towns are crap. Our small town has libraries we chose to raise our property taxes at least once in the last 10 years. You think Buffalo and/or Erie County(which is the county of Buffalo) did??? NO NO NO!!! My kids' have music in their class. You know why because we chose to raise our school taxes...Do you think Buffalo schools have as many schools with music and band?? NO NO NO!!! So I think that Buffalo should get all the attention!!! The bad(everything is),ugly(everyone is),good which there is nothing good about Buffalo except for the GooGoo Dolls came from there and my MS specialist is in Buffalo. Other than that Buffalo sucks!!!k done bitchin about this stupid city/county!!!

Well new addition to my wonderful weather forecast!!! 6 inches?? What the F*ck???Yeah ok so it is gonna be mixed with rain. Better you ask?? Hell no it is not better it can actually be more dangerous. Power lines can be downed, trees like the 3 big pine trees that are right in front of my house the ones that can hit my kids' bedroom!!! Yucky Yucky Yucky!!!!

Quorry had his follow up appontment on his back today. The doctor gave him 2 shots of lidocaine in his back. Which had the exact opposite effect on his back. His back hurt sooooo much more now then it did before his appointment. He know has to go to physical therapy. I guess we are perfect for each other eh? Both young people with more problems than our parents have. It is just f-in crazy!!!!

Rainy, cold, nasty..did I leave anything out????

2005-10-22T16:07:00.000-04:00

What a nasty ass weather weekend!!! I guess I should count my blessings as this great (yeah right) beautiful state of New York is expecting some snow on Monday and Tuesday. Oh I'm soooo excited (yeah right). It is supposed to be a rain snow mix so nothing that will stick. Just the point that it will be cold enough to snow. The rain feels like it is never ending it has been raining forever it feels. I know that the rain/snow mix we are supposed to get for Mon. and Tues. is projected because of Wilma. We always get the rain from the hurricanes. Lucky for us that is all it is. I feel for all the people that still choose to live in Florida.

My stupid injection felt like death last night. I really really hate it. The numbing cream would be great if I wasn't allergic to it. That sucks!! Why do I have to have the world's most sensitive skin?? Can anyone please answer this. Ok if I didn't need the numbing cream I wouldn't care if I had this super sensitive skin. Oh well just Another Brick in the Wall of torture from the stupid Rebif!!!!(had to add a lil musical humor as Dave won't be around for a week to give me more music to look for and listen to)

We are drinking a lil tonight. I know I know I am not supposed to due to the liver problems that could be caused by the Rebif but......just ahd my liver enzymes tested and I am all good. So I am gonna do something I am " not allowed" to do. I love breaking rules. I wasn't much for a rule breaker as a kid..so now I have to get it outta my system.

k will the France family teeth problems ever stop???

2005-10-20T20:28:00.000-04:00

My son Andrew's retainer broke the other day. Maybe my family is just cursed with teeth problems? He has to have a retainer because when he was 4 he had a horrible toothache and I took him to what I thought was a good dentist. Yeah well I was soooo wrong. This so called "dentist" (well he is a real dentist) pulled 2 teeth from a 4 year old when he could have just filled his cavities. So now my poor son't mouth is so messed up and he has to wear this reatainer to space his teeth out to make room for 3 teeth on top and 4 on bottom. This would not have happened if it weren't for the screw up that damn dentist made. He will then need to get braces when the spacers (that is what his retaineer does) are not needed anymore. So anyway we went to the orthodontist today to get his reatainer fixed. She said taht now all we are waiting on is 3 more teeth to come in and he is done with the retainer and on to braces. I also found out today that he needs his wisdom teeth pulled pretty much ASAP. That is kinda scary for an 11 year old don't ya think?? I defintiely have more faith in who he is seeing now for his dental work. We also are not on state insurance anymore so we have a better selection of dentists and orthodontists and such. So we go back to her in December the day after my b-day. Funny thing is I have an appt. with my MS specialist the day before my b-day. At least I can stay hom bored outta my mind on my b-day!!!

Tonight I we went to Bradley's Open House. It was so much fun. We bought some way over priced books at the Book Fair. Andrew visited all of his old Elementary teachers. He said it felt like he hasn't been there in years. Ha ha I thought that was so cute. He has only been in Middle School for 2 years not 20. Quorry said I was back to my snobbish ways when I went off with the girls from Bradley's old school. I made freinds with a lot of those parents last year and now all the kids from Head Start are in Bradley's school this year. We had a good time though. I am definitely ebat after the long day I had today.....

Gonna get flu shot next week.......

2005-10-19T19:46:00.000-04:00

Never have I got the flu shot before. I know that I want to for sure this year. I got the flu twice last year and felt like I was gonna die..I wished that I would die it was that bad!! I am sure a lot of the reason that I got bombarded with the nasty flu last year is because of the Noavantrone. I am so glad that I am done with that crap(hopefully forever). This year my Neuro wants me to get it because of the Rebif and the monthly steroids. So I am not gonna argue. I am gonna get next week probably Thursday. She said I have to get it 2 weeks after my last infusion which Thursday will be 2 weeks since my last infusion. So the nurse that came to do my infusion is coming to give me my flu shot. Quorry got his flu shot today when he went to the doctor's for his back....

He possibly sprained a muscle in his back and man is it killing him. The doctor told him he is too young for all these physical problems. I mean come on he is only 24 and is so messed up. Right after we started dating we all gathered at the local park and played football and he dislocated his shoulder..never got it looked at till almost 6 years later and guess what no fixin to his shoulder. I know that doesn't seem like a lot but trust me I see the pain that he gets in sometimes. I feel for him. It was so funny in a weird twisted way today he said "Make me better". I said ok I will if you make me better. He said well I can make you feel a lil better..I will roll you a joint! It may sound stupid to you...but I thought it was quite funny..always thinkin of ways to "cure" my MS. I am telling you right now if I like the way that marijuana made me feel I would so be a drug addict. I just hate the "high" feeling. That is why I hate the Neurontin and the Zanaflex. I have been on Zanaflex for almost 5 years and still get that "high". Well I guess the good thing is it is still working right??

My spoons are spent already for the week I think.......

2005-10-18T11:48:00.000-04:00

Oh man do my legs feel almost weaker and more unstable then ever. Although I know that is not possible as I have been "stuck" in my wheelchair too many times to try to keep track of. So I guess my legs have been worse. Up again last night with this weird stomach thing that has been bothering me since Friday. Kinda feels like the start of a stomach flu maybe? I didn't think anything of it Friday when I started feeling it. The cramps, the yuck, and the crabbiness of it all, thought well I am haveing my monthly visitor. That is since been gone and still not feeling so hot today either. Actually that is the funny thing...today is colder than it has been and I am burning up. Just don't feel right. I don't like that either, kinda scares me when something else is going on aside from the MS. Also scary because I am far from a medical expert and unsure if some of my "symptoms" are symptoms or if they are so not MS related. Don't see my MS specialis until Dec. 13th. Might call though no point in going to my N.P. (primary care "doctor") if it is MS related and if it isn't my MS specialist will send me to Libby (my NP).

I was a lil scared to call my mom today to tell her that I am not feeling up to par, that I don't feel well enough to go to the NMSS thing tonight. I got home from the dentist and looked on my caller id and saw that my mom called 4x while I was gone and saw a note taped to my computer screen from Quorry saying to call my mom. I checked my answering machine and guess what? There was a message on there from my Mom. I was dreading calling her back to tell her I wasn't going mainly because she took the day off work to take me and to go with me (she loves going to these MS things with me). I knew I could not put it off all day so I called her about 15 minutes after I got home from the dentist. She answered the phone sounding like crap. First words out of her mouth were "I hope you won't be too hurt or upset with me if we don't make it tonight"..I said "Oh thank god!!" Apparently neither of us feels to well, so that kinda made our plans for the night. I know I will make a quick easy dinner and head straight to bed. Maybe even have Quorry make dinner? Who knows.

I know that I am very tired as I was up with not only my stomach problems last night but yes another damn headache!! I am going to be ready for an early early night I know that for sure!!

Dentist said that I have minor gingivitis. Which I knew already and I do everything she told me to do. She told me the reason that my teeth bleed more and more is because a few of the medications that I am on. She also said the chemo. did not do as much damage to my teeth as she expected or has seen before in other patients. That was good news. Only have 3 teeth that need fillings. So same old song and dance...get up in the morning Listerine pre-brush whitening stuff(my own call) , floss, brush, Listerine, Then ACT flouride rinse. So I will continue to do all of that and hope that my teeth don't get worse. Which my teeth are actually in pretty good shape!!!

Freezing to death...at least that is what it feels like....

2005-10-17T12:44:00.000-04:00

I hate when I get cold!!! It takes forever for me to get some warmth back into my bloodstream. I've noticed that since MS not only does the heat affect me so does the cold. I don't know who hates it more me? or my husband? He gets the torture of my "coldliness"(hey I think I invented a new word?). I put my really cold feet all over him on his legs mostly and he hates it soooo much...but still lets me do it. He is a heat box and gives off the best of body heat and I take full advantage of that! I have a tank a teeshirt and a heavy fleece sweatshirt on and I'm still cold. Mainly my hands which does not make complaining about being cold an easy task when I'm complaining through typing!!!

Well tomorrow is the NMSS convention thingy-majig that I am going to. Hopefully it will be enjoyable. I'm thinkin it might be just a tad boring voting on that board members as I don't know anyone there to vote for. At least I can see a lil more into my local chapter. I was a lil disappointed how the MS Walk was handled this year compared to the year before. Maybe they will let us voice our opinions on that aspect? At the very least I can hear about some of the new trials that I won't be able to be in...but who's to say that someone that can be isn't the reason that I get better? I'm certainly not gonna say there is no chance for me. For us for that matter!

I get to see the dentist early too. Which is good. I get to see her at 8:45 tomorrow morning which will be great to get to the bottom of this horrendous gum pain and swelling I am having. Hopefully not an infection but I am pretty positive it is. I just ahte when I have to take anti-biotics because I HAVE to take my birth control pills and those 2 drugs don't mix well together. Ok they do if I wanna get pregnant...antibiotics make hormonal contraceptives less effective. So who knows guess I would rather get my infection cleared over making love with my husband for a week or so.....or would I??

Nasty weather brings me down even more.......

2005-10-16T14:31:00.000-04:00

I hate this nasty weather. Oh joy it is only gonna get worse too once the winter really hits. The last 2 days have been so cold, rainy, and nasty!!! I guess when there is no sun shining my spirits aren't shining either. Kind of depressing weather. Oh well at least it isn't snowing!

I'm so tired and have no clue why as I have been sleeping so well it scares me. I know I know first I bitch that I can't sleep now it seems as though I am complaining that I am sleeping too good. Well just a reminder and FYI...I am a woman. which gives me the right to not be happy with whatever is thrown at me!!! Maybe I should lay down with the 2 kids that are here and nap before I go try to tackle some dinner. These 2 have not been sleeping very well the last 2 nights. I think because big brother was away for the weekend and Mommy let them sleep on the couches and watch "scary" movies on Nickelodeon. Who knows but I know that they are whooped. They didn't even eat dinner last night because they said they were too tired. So I made a very nice dinner last night and no one ate it. Well Quorry and I shared a piece of chicken and each had a dinner roll. I didn't even wanna make dinner last night but did and wasted my time and effort. Oh well it will work great for leftovers for me and Kaylee all week for lunch.

I got the great privileged chance to "talk" to Dave on msn messenger yesterday. He is a great super guy!!! Now he has back into this music kinda mode..guess that isn't so bad...don't "they" (whoever they are) say that music heals the soul..or helps? Who knows I have never pretended to be a super intelligent kinds girl right?? Oh yeah thing is I am but not very smart in the common sense department!!!!

Slept last night.....was surprised....

2005-10-14T17:13:00.000-04:00

Can't believe that I did either. Especially after the steroids yesterday. Didn't fall asleep till around 1 but at least I got some sleep. I know that I kept my husband up though trying to get comfortable. But he wasn't gonna get great sleep anyway because he has had this horrible toothache. Which really sucks beacause he just got done getting all of his dental work done like fillings and his route canal. Then bam he gets hit with a helacious toothache in his front teeth. I feel for him too because the dentist can not see him until the 31st. Kinda makes me alittle scared to get the rest of my dental work done. I have been waiting to go back to the dentist too. I had to quit going because of the Novantrone..the bacteria dental work can drudge up was not good for me while on the chemo. Now that I am done at least for a while I can get back into getting the rest of my teeth work done. I know that I have gotten 3 new cavities which sucks too. At least I am one of these people that takes care of my teeth hell at least I still have teeth right?

I get this word of the day on my front page of my internet and today's word of the day was all too familiar..
exacerbate
DEFINITION:
(verb) to make worse or more severe.
EXAMPLE:
The roads in our town already have too much traffic; building a new shopping mall will exacerbate the problem.
SYNONYMS:
aggravate, infuriate

Hmm..pretty sure today I knew what this one meant. Is that good or bad? not sure yet..good because I feel smart today bad because I know what it means and to me that word is a 4 letter word.

Got that nasty aftertaste of 'roids in my mouth......

2005-10-13T13:34:00.000-04:00

I hate that too. It is much worse when I dringk water too and water is my drink of choice. So I got some Mountain Dew at the store last night in preparation of this nastiness. So far still nasty. I did manage to get a sandwhich for lunch and it wasn't bad at all. Roast beef on wheat, no mayo, no cheese,just roast beef. I am sure I will get shit for sleep tonight because of the steroids but used to that non-sleeping mode so nothing will be different tonight.

I fell asleep before 10 last night which normally would be great. Last night not so good because I do my Rebif at the same time approx. every shot night shot time just so happens to be 10. I woke at 11 from Quorry getting outta bed to give me my shot. I guess he was just gonna give it to me while I was sleeping. Glad that I woke up that probably would have scared the hell out of me if he did that. He would have got a kick out of it too as he loves nothing more than scaring the living daylights out of me. Shot went great didn't use the numbing cream as did it in my stomach and hardly feel it there anyway. I then went right back to sleep and stayed sleeping until 5 this morning. So maybe tonight I can stay on this good sleeping track but not holding my breath because of the steroids.

I've been back to my ebay junkie days this week a lot!! I bought Kaylee a really cute brand new winter jacket. It has Barbie on it and she will just love that. I bought Bradley a new jacket too. Ebay is my favorite place to shop too. I also sell on ebay so really don't use any of the household funds to buy my ebay stuff just use the money that I make from selling on there.Wow that was a confusing circle kinda post to my self it seems? I'm a lil weird after the steroids....

Finally got some good sleep.........joyous!!!!

2005-10-12T09:47:00.000-04:00

I got some great sleep last night. I took a shower at 8ish while Quorry put the 2 youngest to bed, Andrew was at Awanas with his friend like every Tuesday. I got out of shower and right into bed. Quorry and I watched our normal Tuesday night shows and I fell asleep even before the news at 11. I did not wake again till 5:15 to make sure that Andrew was up getting ready for school, he was so I did not even get out of bed. Went right back to sleep till the alarm went off at 7:15 for Brad. Then I got up for the day. It was sooooo nice to get that much sleep. I can't remeber the last time I got that much sleep. Uninterrupted at that. I didn't even have to get up to make my nightly rounds to the bathroom 7 or 8 times. I thought for sure though this morning I was gonna pee my pants I had to go so bad. Must be my spastic bladder was giving me a break last night. Could be because I have been so doped up on my muscle relaxers and maybe just maybe one time they worked for my bladder. Which I know most likely isn't why..but so what I don't care why I slept for almost 8 hours!!!

Next Tuesday I am going to the Annual Meeting of the National MS Society which is followed by "Research Updates" with Dr. Bennett Myers. I have never met Dr. Myers he is an MS specialist at one of the 2 MS clinics in my area and he is at the one that I do not and will not go to. I am excited to go I love trying to keep up on the most current news that affects me and my body. It is at a nice place called Protocol, and dinner will be served. Now my only problem is finding something nice to wear. I have no nice clothes anymore since I have lost so much weight. Hmmm..I will just make Quorry give me some money so I can go shopping!!

I was just asked to be assistant manager of one of the MS online support groups I am a member of. I was excited but it was kind of bittersweet. The owner of the board is not doing so well right now and needs soem help he might hand the board right over to me. That is a huge resposibility...but I am ready to take it on. Like I told him I have nothing better to do all day then to run this board and bring it back to life. So I am gonna do my best to make him happy. He sent me the sweetest e-mail..telling me that he would like me to be asst. mgr. because my vibrance and youth will bring the board awake again. That sure helps my confidence

I thought i maybe would sleep last nite...nope Migraine won....

2005-10-11T14:41:00.000-04:00

I had a horrible headache!!! I turned the tv off at 12 thinking that maybe I would go to sleep. I did it was great but woke up at 1:15-1:30 with this damn throbbing pain. It was horrible! So I got up and took a prescription ibuprofen. What the hell was I thinking that this candy type pill was gonna get rid of this overabundance of pain? So I took some of my sleeping pills (which don't hlep me to sleep) thinking maybe they would help. WRONG! I took some of my muscle realxers cuz I needed them anyway and thought maybe just maybe they would relax me enuff to sleep. WRONG! So needless to say another sleepless night. Called my neuro today to tell her that I've noticed lately I have been waking (when I sleep) with a headache every morning. She said that it was possible becaus of the a place on my brain where there is a lesion, and that she would get back to me. I know that my vertigo and dizziness is lesion related so this being lesion related would not shock me. Either way hopfully Thursday all of this will be calmed a little because I get my magic IV. Only one day this month. I don't like the nasty blah in my mouth afterwards but the benefits far outweigh the negative of the 'roids (for me anyway).

So last night I did something that I have been contemplating for a month. I went and got my hair chopped off. It was dead and really thinned out (thanks Novantrone ). Not that I minded the chemo. it did a lot for me physically (including making my hair thing A LOT and look dead). So anyway my hair was like 3/4 of the way down my back and is now just at my shoulders. The stylist cut off all the dead and left me with just he new hair growth. I got bangs too which I was a lil apprehensive of doing simply because My part is straight down the middle and knew that my bangs would be split down the middle. The stylist gave me long bangs though that go to the side. It looks so nice and healthy all over again. Still not too thick but appears a lot thicker than it really is. Someday soon I will have my hubby take a pic of my new do and I will post it on here (provided I am happy with the pic). I really don't care for many of the pictures of me but I will deal. This new do does make me look my age now. I don't look so much like a teenager. I like that maybe my boys' teachers and their friends mothers will not look at me so funny now. I do look more of an adult with this cut. I like looking my age. Now ask me in 4 years when I am 30 if I like looking my age and we might have to fight!!!!