Friday, October 28, 2005

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

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!!!!

Thursday, October 27, 2005

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

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!!!!

Wednesday, October 26, 2005

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

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!!!!!!

Tuesday, October 25, 2005

I think that maybe I am depressed????

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....

Monday, October 24, 2005

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

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!!!!

Saturday, October 22, 2005

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

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.

Thursday, October 20, 2005

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

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.....

Wednesday, October 19, 2005

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

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??

Tuesday, October 18, 2005

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

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!!!

Monday, October 17, 2005

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

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??

Sunday, October 16, 2005

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

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!!!!

Friday, October 14, 2005

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

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.

Thursday, October 13, 2005

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

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....

Wednesday, October 12, 2005

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

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

Tuesday, October 11, 2005

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

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!!!!

Monday, October 10, 2005

I'm no longer afraid.....of the pain anyway.....

I am so happy about that too. Friday night did not go. I really needed my Zanaflex more so then ever because the spasms were horrible. Fell asleep around 8 or so and was down for the count. Quorry tried like hell he said to wake me but I wasn't there in his words. So Saturday night was the dreaded night!! Guess What??? I didn't feel anything except the last few seconds. I thought the pain that I was feeling was him sticking me with the needle which I thought was odd because I have never felt that with any of the other injections from this med. or any other med I have been on. It was actually the very last of the medicine being pushed in that I felt. So now tonight I am in NO FEAR!! of the pain of this medicine. I am a lil scared thought because this was my first injection that I bled and when I say bled I mean I BLED!!! So I am gonna call MSLifeLines today and see if that is normal? They did tell me that they would be open today even thought it is a holiday. The funny thing is they asked me "is it a holiday where you live on Monday?" I said yes and they said well it isn't for us (by the way I was talking to someone in NY which is where I live). I thought Columbus Day was a holiday everywhere in the US?? I know the post doesn't come today.

I can not wait to go to bed tonight. I just got a new bed today it is nice. It is a pillowtop and hopefully will help with my back and maybe some with my sleep. You know what is weird I did the same thing saturday nite with my Zanafles and guess what?? Did not sleep. I wish I knew what was wrong with me and not sleeping. The rebif nurse did tell em that the sleep disturbances is not a side effect, yet they ahve been recieving many repots on it lately so guess what? IT IS A SIDE EFFECT!!!! Didn't sleep last night well but gave me a chance to catch up on some of my shows I guess.

Friday, October 07, 2005

Trying to mentally fix my mental state of mind.....

I am tryin to mentally prepare myself for that dumb ass Rebif shot tonight. I'm also tryin to fix my state of mind (bad) to positive. Even though that is hard right at the moment. It's hard to try to look positive when you are doing everything you are told you are supposed to do to get better and NONE of those things are makin you better. It's hard when all of those things just let you slide down that hill full throttle with out even an emergency brake to prevent you from crashing. I hate it when I am like this. But what can I do that I haven't already done??? I mean c'mon I have 3 very good MS specailists "working" on me and they all know what they are doing and still no help for me!!! It is frustrating!!!! I don't blame anyone for any of my problems....but still it is hard...maybe it would be easier if I had someone to blame. Who the hell knows?? Right now I feel like I don't know anything about anything myself included.

I talked with one of the Rebif nurses today and told them about my problems with the pain and the burning and they suggested: take a hot shower right before the shot. numb the area with ice or cold compress, take ibuprofen..blah blah blah..same shit I've heard a million times..and by the way tried all of it seperately and all together..didn't work. So the nurse then suggested calling my Neuro. and seeing about getting a prescription for EMLA So I called the Neuro. adn she phoned me in a script for it. She also suggested using aloe vera gel with Lidocaine for after the shot. So I will see how tonight goes. Wish me luck please!!!!

Thursday, October 06, 2005

Maybe I know why I can't sleep....

K well I was just on one of my many MS message boards that I belong to and saw some posts on "Rebif and sleep disturbances". So that is my theory. Maybe it is the Rebif because I have only been on it for a lil over a month and when I started it is when I started having problems sleeping. Who the hell knows?? Obviously I do not or I would shout out to the world tht if you are on Rebif be prepared you won't sleep!
You know what??? I hate this f-ing REbif for more reasons than not bein able to sleep. Last night my shot hurt so bad that I can not even begin to try to explain the pain that I felt. It was so bad that I was bawling like a baby. I know that my husband did everything the right way. So I do not understand why it hurt so much. I do not want to ever, ever, ever, ever, ever(K I'm sure you get the point) take Rebif again!!!! It was that bad!! Oh joy Friday starts the full dosage too. so now I don't know what I'm gonna do Friday. I told my mom today when we were out and about all of this and she said you know what "Amanda you know you have to do this" I said Yeah and your point? I do not have to do this!! So it will keep me maybe out of the wheelchair. I've done everything else that I "HAVE" to do and where the hell has it gottne me?? no where but worse!!! So then she said " Fine, Then I will just tell your husband to stab you with it when you are sleeping, and Amanda you know as well as I do that he will do if not because I ask him to but at least because I know he loves and cares about you and wants what is best for you" I do feel bad for talking to my mom that way but as much as she tries to understand and boy does she really try she never will be able to understand. I'm so glad that she is and has always been here for me. The way that I respond to her sometimes is just horrible but she understands..but that still doesn't make any closer to ok does it? Ok well can't type anymore when I'm in this mode/mood I cry too much to type anything else.....

Tuesday, October 04, 2005

Long boring day......

Which that is so fine by me. Probably wouldn't have gone anywhere if I had the choice to. My legs are so freaking bad I don't even feel safe taking a shower out of fear that I will fall and hurt myself. Don't worry folks I shower everyday!!! My left leg which happens to be my bad MS leg as far as weakness goes has been really hurting me in a new different way today. It kind scares me a lil. I suppose I will finally call my neuro tomorrow and tell her about all of these new things. I am due for my steroids on the 15th hopefully those will help me a lil more than the last steroid treatment of 3 days did. Friday is coming way to fast for me. I am soooo terrified because that is when I start the 44mcg. of the Rebif!!! Don't wanna at all. This 22mcg is already putting me in tears from the burn of it all. Maybe I would prefer to go back on the Novantrone but she (my neuro) would want me to still do the Rebif. You know what MS f-ing sucks big time!!!!!! I wish sometimes ok all the time that I was still RRMS. Things were so much easier on me and my family when I was RR. This PRMS crap sucks big time!!! Feel like I am wasting my time with the injectibles as the last 2 did nothing for me. I just kept getting worse and worse. Believe me I stuck to my guns and took my shot everytime I was supposed to and for what?? For nothing soemtimes that is how I feel then I look at my precious little babies and say it is worth doing this for them at least.

Sorry everyone for the depressing kind mode on here just in one of these kind of moods. I guess the pain always get to me and that is when I get like this.

Chris I hope that you get your blog up and running as I can not wait to read it!!!

Monday, October 03, 2005

Stressful,tiring weeks end.....doesn't make for great weekend...

Well after the 2 long days with my daughter, my weekend pretty much was just catching up on some rest. Like the kinds of rest you need when you were pacing the halls of a hospital all day. That was the kinds of rest I needed. My legs are beyond the on fire neuropathy pain lately. More like they are in the oven turned on to 500 degress with a blow torch. That is how bad they are "burning". I guess mostly my part as I have slacked on my Neurotin these last few days. How stupid was taht? How stupid is it that I am bitching about it and yet still today have not taken one single pill for the pain???
Last night again not much sleep. I have been taking my Zananflex and my Elavil..still not much help. I'm gonna probly call my Neuro and tell her that I am not sleeping well yet again. All last week I had a hard time staying awake until 9 or so. Great..but then I would wake up 1-2 hours after I fell asleep..and then didn't go back to sleep till the wee hours of the morning. I get up with Andrew at 5ish. So not much sleep last week either. Not much sleep for the past couple of months. Oh well at least I am here that is all that matters. Right?? Well yeah of course my babies and my husband need me.
My long distance friend Suzy sent me this great link today. It really great. You should really check it out. It really puts my life inperspective. Makes me not want to take things so much for granted. www.monday9am.tv
If you are viewing my page PLEASE take the time to donate to People with MS at www.nmss.org Thanx!!!
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