Friday, September 30, 2005
Thursday, September 29, 2005
K update on my daughter....
Not a tic-tac this time.....
Wednesday, September 28, 2005
Tired..oh so tired....
Got a call last night that made me sooooo happy. In about 6 weeks Gerrott is moving back to NY and getting the hell out of Pennsylvania. I have so much to do. I have to get him enrolled in school, go get temporary custody, and rearrange his room. It so will be worth all of it. I miss him so much. I am a little worried about the big fight I am gonna have with his Dad. he is gonna fight me all the way on the custody issue. here is the thing he has nothing on me...I have never done anything wrong legally like he has. Because Ann is leaving him he will go right back to his drinking habits and no way in hell do I want my son with his Dad if he is gonna be the drunk that I left. He knows that she is moving back to NY and he doesn't wanna come. He is already back to drinking because he knows if he doesn't come with her it is over. It is sad for them and those 8 kids that they have together but the kids miss NY and all the family that is here. I am probably gonna try to meet her in Elizabethtown which is where they live. If I can and maybe help her move some of her stuff. I hope that I can. I love Ann she is the greatest step-mother to my son. I could not ask for better. She is one hell of a woman. She takes care of 6 kids on a full time basis...now mind you one of them kids is mine... and in summer 8 kids...2 of his kids from a previous realtionship...and she has Fibromyalgia. She is one hell of a woman. Her and I are good friends. It was either hate each other and make my son't life a living hell or get along for his sake. So we chose the latter. From that a friendship bloomed. She is a great friend we talked on the phone for 3 hours last night.
Ok Here is the answer to the brain teaser from yesterday....Halloween..you just look at the errors and add the letter that is missing. That will then give you Halloween. Kinda different I thought. So I am not gonna do riddles anymore. I might do something else who knows.
Ok I can't find the picture of me as a lemur. But i have to confess that I lied there is another photoshopped pic on my puter. There is one with my face on a llama I believe that is what it is so now I am gonna post. No rude comments. That was along day and I look like hell. It was a long day those MS walks are tiring. Not that I walked I could not even walk 5 inches let alone 5 miles at that time. I rode in my wheelchair. My dad pushed me like he does every year. ok well I give up my pics are not working. I tried.....
Tuesday, September 27, 2005
I am so glad that Quorry has the whole week off (aside from no paycheck this week)because he has been so sick. And like any other stubborn male that I know he was fighting me on going to the DR. Well today finally he said will you please call the doctor..I need to be seen. Oh really like hello have I not been telling you that. Anyway I called and he got in right away. He has an intestinal virul infection. So he can't even go on the BRAT DIET strictly liquid. Like if you can read through it you can be on it..with the exception of sodas they have to be flat no bubbles, no carbination. Thank god I got him off the 5 two liters of Dr.Pepper a day diet already or I would ship him off to get over his caffeine addiction. Thank god he finally just got into dirinking water more often. He likes to steal my (Dasani) water all the time too jerk!! Oh well you know he has lost like 20 lbs since I made him quit drinking so much soda?? Which is good for him in more ways then one. So now he is at his mom's doing some work for her that she can not do because of her shoulder surgery a couple months ago. He is gonna start out today doing the garage for her.
I'm gonna start something new for myself mainly too. For mental excercises which are good for my minor cognitive impairments. Today I'm gonna start with the daily brainteaser for myself to try to figure out. Then from now on will post the answer the next day. You can get these brainteasers from Braingle. They really are good for us MS people there are a ton of things for mental excercises but I think a good start for me to keep my interest is the brain teasers. Later maybe I will move on to bigger stuff.
As you are reading this message, you will notice some spelling errors.
Do not be frigtened, however. This is how you must anelyze: First, find al of the missing, repeated, or incorrect letters
Second, alow yurself to look at these and look at the wword that is represinted
Finally, tell me a numbur that most commonnly is associated with the word
Monday, September 26, 2005
Stolen Goods ( stolen property isn't as good with the thief is it??).......(thnx Mark)
2. Are the photos you post Photoshopped or otherwise altered? okay the only photoshopped pics even on my puter are ones of my face on a lemur from the Buffalo Zoo because I took tons of pictures there from the MS Walk and everyone thought it would be funny to see me as a lemur
3. Do you like it when creeps or dorks email you? Well I just got a new e-mail addy so don't get many emails at all yet..if this answers changes in the future I will update it...but FYI..if it were true I would like it at least then I would have someone the same as me to chat with
4. Do you lie in your blog?Oh no way no freakin how (she tries typing with her long ass nose in the way) I don't really think I lie so much as I definitely over exxagerate..but don't lie
5. Are you passive-aggressive in your blog? What do you think???
6. Do you ever threaten to quit writing so people will tell you not to stop? ummm..no..I do this purely for self release...don't care if others like it or not to be honest
7. Are you in therapy? If not, should you be? If so, is it helping? No I am not in therapy (mental) anyway.....
8. Do you delete mean comments? Do you fake nice ones? I have never gotten a mean one yet anyway....No I do not fake nice ones I have so many cute nice guys leaving me enough nice ones I don not need to fake them (LOL)
9. Have you ever rubbed one out while reading a blog? How about after? Nope definitely not
10. If your readers knew you in person, would they like you more or like you less? Honestly I think they would like me less...I am usually a really crabby sometimes mean bitch
11. Do you have a job? Yes My title is Domestic Diva
12. If someone offered you a decent salary to blog full-time without restrictions, would you do it? Oh probably a real salary how could I pass that one up??
13. Which blogger do you want to meet in real life? Oh gosh there are now just new found bloggers to me...but probably Dave would be on the top of my list because I do owe him a nice pinch on the (that cute little) ass of his
14. Which bloggers have you made out with? None :(
15. Do you usually act like you have more money or less money than you really have? I don't think I act like money anything?? Money is just a tangible stupid object
16. Does your family read your blog? My mother-in-law Jade is the only one
17. How old is your blog? Not even a year old yet still in diapers and on a bottle
18. Do you get more than 1000 page views per day? Do you care? I have no freakin clue and could care less
19. Do you have another secret blog in which you write about being depressed, slutty, or a liar? Well if I told you that it would not be a secret and I would have to kill you
20. Have you ever given another blogger money for his/her writing? Nope don't recall that
21. Do you report the money you earn from your blog on your taxes? i don't earn money but if I did no way....the government has screwed me so much in my short life span I would like to return the favor
22. Is blogging narcissistic? Hmmmm...Look at the title of MY blog it is MY Complications....amanda's rants and raves, where I talk about MY problems..so no it is not
23. Do you feel guilty when you don't post for a long time? Nope.... should I???
24. Do you like John Mayer? Who??
.25. Do you have enemies? I sure as hell hope not and if I do don't really are because I am one tough bitch
26. Are you lonely? Oh god NO!!! I need more me ( I am not a narcissist I sware) time
27. Why bother? Just fun to do more fun then my normal laundry and dishes
28. Favorite Blogging Tip Do what you set out to do with your blogging
Sunday, September 25, 2005
a weird concept??
Saturday, September 24, 2005
Great seminar..to say the least......
The first speaker was Bianca Weinstock-Guttman, MD. She spoke mainly of the clinical aspect of MS. She spoke some on the return of tysabri to our MS Clinic. Of the differences of all of the FDA approved drugs. Like I said her presentation for the most part was clinical. She happens to be Shelly's doctor so she was very pleased to listen to her speak. Up next was my doctor Neeta Garg, M.D.. She spoke on symptom managemant. Her presentation was more up beat so to say. She made us laught. Talked about the importance of taking it easy when feeling overwhelmed with fatigue and of all the medicines used to help with fatigue. It was funny because all of the medicines she spoke about for fatigue I have tried. Amantadine...put me to sleep, Adderall..terrified me because of the way I felt the first and only pill I took, Provigil ...I can not take because it will make my birth control un-effective ( can't do that), Elavil...which I take. Then next up was a physical therapist who works very close with my MS clinic. She had us doing yoga excercises from our chairs, and all kinds of stuff. She Susan Bennett, P.T., Ed.D.,N.C.S. definitely ahd the room awake. Then it was Marathon Runner & Mountain ClimberWendy Booker . What a great speaker. This woman is soooooooo amazing and has been on Copaxone for the 7+ years she has been diagnosed with MS. Truly inspirational.
So far today I have baked banana bread. Easy Black Bottom Cupcakes , which I can not wait for these cupcakes to cool down because I remember my grandma making them for me when I was little and loved them soooo much. Sometime today I am going to make some pumpkin bread too and probably some brownies. Who knows?? Quorry was supposed to make peanut butter cookies, but he drank way too much milk and now his stomach is bothering him big time. Oh yeah and I did all of this baking so far by myself because my jerk FIL cam and stole my boys for the weekend. Which is ok by me they need a break from their crabby mommy!!!!
Friday, September 23, 2005
To mate or not to mate....that is the ?.....
Well I called Joan today about my shots. She said just make sure I rotate arms, tummy, and ass. She said if I love even 5 more lbs the arms will be out of the question. She makes it sound like I am like 90lbs. or something.Lord knows i am far from that. I just wish that there was ananswer to this 30 pound weight loss. I'm not complaining in the least but it happened so much so fast. It it a little scary. I have to say though that my appetite is beginning to make an apperance more and more....
Thursday, September 22, 2005
Not my fault he's not happy.......
I am going to call Rebif and Joan ( my link to my dr) to see where the hell I should do my shots. CAn't do them in my legs they are too thin and damn did it hurt only with the 8.8mcg. My dr. told me last Tuesday not to do them in the legs. My ass and tummy are my site of choice..god knows after having 4 kids I have enuff stomach to do it in, my ass well it is flat but there is plenty to pinch up on. My arms are a very hard spot to do also. So who knows where I am gonna do it tomorrow?? Did it belly last nite, and ass on monday. I guess I will figure it out tomorrow??
Wednesday, September 21, 2005
Got out of bed.......
Aurora called twice already this morning. Can't she get the hint. I did not answer the phone yesterday, last week the week before...What's it gonna take for her to get the hint. I will talk to her when I have to because my husband happend to like her husband and so do I. We will not go there for bbq's or anything like that though. Her kids are such a bad influence on mine and I don't like that at all.Her kids are worse thatn my sister's bratty little kids..that is so hard to believe that there are kids worse than my sisters. Not that I am saying my kids are prefect, but at least my kids have structure and discipline in their lives..heather's and Aurora's don't. They feel bad when they punish their kids...BIG BIG mistake on their part. But you know what none of my business what they do with their kids.
Possibly good news for us MS'ers soon....http://uk.biz.yahoo.com/050921/214/fslp2.html
Tuesday, September 20, 2005
New day but same old crap......
I am looking in to going back to school. My brain needs the exercise and I miss school so much. I really enjoyed school when I was a kid. So we shall see what the future brings for my absolute boredom. I can get on here and do what?? I can only do do much on the net then I have nothing else to do. I can only clean my house so much. I can only talk on the phone to these imaginary friends that do not exist so long. I can only go to god knows where a few times a week. My point is I need more of an out, more of a release, More of a life. I do not want friends that is for sure as they do not understand at all. My "friend" Aurora gets mad when I do not wanna go here or there when I am just too damn fatigued or tired. She said the last time she invited me to go somewhere with her...So do u wanna go to the city and do some shopping , I said well....she interrupted..let me guess you are sick right?? Of course you are like always. Well I will talk to you later. You know what Fuck here and the damn horse she rode in on. See with friends like that I don't need friends at all. I'm so much happier without friends.
Monday, September 19, 2005
What a tiring day...
Tomorrow....well no plans really....maybe talk to my mom since she has been so busy lately with my grandma visiting and then her just getting back from Chicago. I know that I have to definitely save some energy for Saturday. That is my seminar and I am very excited. Shelly emailed me with her cell phone number so we can try to meet up in the parking lot. i'm a little nervous though. I worry about what other think about my looks WAY too much. I guess it's just the fact that I don't have much for self confidence. Quorry makes me feel beautiful all the time but when I am out in the public eye...I feel well like I look like a nasty freak. i have some more confidence sice mysteriously losing 20 lbs. Which I have to say does make me feel better. Iwas happy to a point at my weight I guess mainly because I maintaned it for 3 years. It is such a pain now because all of my clothes are way to big and I tend to not spend money on myself. So I have been borrowing my mom's and mil's pants and stuff...just to have some clothes that fit. We will see how I feel about all of this come saturday when I am sure there will tears because I don't like what I am wearing...but that is just my normal juvenile moods that I get into sometimes. I never really got to do all the normal juvenile things...when my age group was doing that normal stuff I was changing a diaper or potty training. Let me tell you having a baby at 14 really makes you grow up fast, I would not change it for the world...I had Andrew..and all my peers had drugs and problems.
Do you ever wanna do this sometimes to someone?? I DO!! I DO!!!!
Saturday, September 17, 2005
Have I been in a poor poor me kinda mood lately?? I didn't think so......
FIL: anything that happens to you that you don't like IS your fault....me:yeah but that doesn't ring true for me..I can't control what happens to me FIL:bs you are sick ... that's it , you have a disease that you can't control but you can run the house me: god do I wish that I could be in charge of everything that happens to me
So maybe to some of you that doesn't seem like such a big deal but man did it real hurt me soooo bad. I have done nothing but be there for this man to be a shoulder to cry on. I guess he was having a bad day..but I was not even after all of the healthcare mess that happened. I got my steroids I was happy until he decided he would take his bad day out on me. He did apologize but that felt empty to me. I went to his house after my MS walk in May and boy was I in sucha great mood. My team raised almost $5,000. I told him that do you know what he said??? Well it is just to bad that the money you guys raised will all go for corporate bullshit..not to find a cure they probably won't find a cure in your lifetime. That hurt me so bad he apologized and promised he would never bring my MS up around me again..so you see that is why the fake ass apology I got last night was nothing to me but another fake ass empty bullshit apology!!!!
K on a happier note next Saturday I am going to an MS seminar. My doctor is one of the featured speakers and so is another doctor from my MS clinic. Anyway someone that I met online at http://www.copaxone.com, sees this other doctor and she lives 5 minutes from where the seminar is. So we are going to meet up there that is soooooo freaking exciting!!!!
K well I will be back periodically today my nurse it gonna be here any minute to try to get a vein. please wish me luck!!!!!
Friday, September 16, 2005
didn't you think I was done bitching for the day???? So did I ......
Well ok so I was happy for a brief moment about the fact that I won't be treated like shit anymore form people that I rely on so much. Okay so she tried a good vein it blew, got another good vein it blew, got another good vein it blew, got another good vein..and guess what yep u got it that one blew too. So fianlly 4 blown veins later got a good one that held up and that I was gonna keep in for tomorrow..but man was burning and pounding and well pulsating is the best way to explain it . By god did it hurt. So who knows what is gonna happen tomorrow?? There are not many options considering each hand has 2 blown veins. Maybe my arm again. My arm was used the last 2 days..3rd time's a charm right?? God I sure hope so...So please please wish me luck for tomorrow!!!!
k well how in the hell is more healthcare mess ups gonna be allowed to happen????
Oh yeah she was pissed because I did not get a hep lock yesterday. I told her I am the one who has to get poked so what is the problem. She said not so nice at all it would have been easier on me then I would not have had to come over with the new nurse. Easier on her ??? Go screw off bitch. First of all my vein was on the verge of blowing yesterday just while the med. was running, and I am allergic to any kinds of tape and they hurt me so bad. Screw her like I said I am the one who has to get poked. Last time I got 3 days of roids I was poked almost 20 times because my veins suck. My god I get IV' s all the damn time soon very very very soon I am gettin my medi-port. And all this poking crap will be done 4 ever!!!
k thought being screwed by healthcare crap was over..boy was I wrong
So I didn't sleep for shit last night due to the Steroid power jump. I hate when I get it but I love it to. Hate it because then I have a little burst of energy and I do way too much and get back to worse then I was before the steroid energy high. Man are my legs feeling that stupidness of a mistake. I love it because I can get everything done that I hadn't been able to get done while I was down and out. Like getting the kitchen floor clean. and stupid other lil stuff that just bothers me. See I am not a neat freak but I like my house to be as spotless at possible. When I say my house is a mess and people are here and they all say I wishe my house was as messy as yours is, meaning they wish their house was as clean as mine. They can't understand how a disabled mother of 4 always has a clean house. You know what neither can I. You need to ahve a celan house when You are medicnes that lower you immune system frequently , like the Novantrone and the Rebif lowers the immune system too. So I have to keep a clean house. I have a $1300 vacuum cleaner that does everything but wipe my ass. So I use for everything but that. It shampoos too. I need a shampooer I have a brand new carpet in a few rooms in my housem My boys just got a new carpet less than a month ago. The carpet in my living room was laid about a year ago when we bought our house. So I definitely have to keep up on my carpets...I don't wanna have to be replacing carpet anytime soon. Carpet it way too expensive.
So I am getting dose 2 of roids today. Who knows what the hell time or who it is gonna be because my health department is outta their mind. They are so not with it and many people myself included are paying the price of them being a fuck up. I just don't wanna get it when my daughter wants to be eating lunch like I did yesterday. Oh well I guess as long as I get it what right do I have to bitch???
Thursday, September 15, 2005
What a joke the healthcare system can be sometimes......
Barb=my town's head homehealth care nurse she overlooks all the visiting nurses.
Jack=my drug dealer the guy who has always delivered my IV drugs
Cathy= the homehealth care nurse that did my last chemo and who taught my husband how to do the Rebif shots
Carolyn= my former PT
Ok now here is the story...Yesterday morning about 9 am Barb called me and man was that bitch in rare form let me tell you what..she said did you know anything about steroids for 3 days. I said yeah I do, she said well your doctor's office faxed it to Carolyn for some stupid reason and not here nor Option Care (which is the pharmacy that fills these orders for all my IV drugs.) Now keep in mind that she was mean, nasty and very rude to me. I told her I said Barb the person that usually does all of this for me that has all the necessary fax numbers was not in the office yesterday. She said I don't give a shit Amanda. JNI (Jacob's Neurological Institute)(my docs office) is a multi-million dollar corporation they have to be with the widespread prevelence of MS in our community. I told her that everyone makes mistakes haven't you ever made a mistake?? She said NO I have never. Yeah freakin right. So we hung up me hurt and pissed. Then Carolyn called me and explained it more to me so that it made sense as to why it was faxed to her. She said when I called her and told her that my doctor wanted me to stop the PT ASAP. Gave her the phone number to my doc's office and the person she spoke with that day gave her the fax # to my doc's office so she could fax something to get the a ok to stop my PT. So the person she spoke with that day is the one who ordered my orders for yesterday. This person is not familiar with my case at all and had no idea where to fax anything and the only fax# she had was my PT's. so it made perfect sense to me. So anyway Jack called me and said I am gonna be there around 7-7:30 is that ok I said yeah sure. K So when Cathy showed up at like 6 I was a bit confused. She said that Barb told her Jack would be here 5:30-6. I said no Jack is not gonna be here till 7ish. She said ok I will be back I said ok. She came back at 7 and 10 after Jack called saying he was running late he would not be here for like an hour and half. That was fine with me except for I did not wanna get the roids so damn late. Cathy said that it is the County's rules to not start the iv roids after 6 but Barb wanted her to because get this Barb did not wanna have to work this weekend just to give me my roids.What a bitch!!! So I did not get any last night ha ha Barb. she better not take it out on me saturday. But I got my roids at 12p.m. today so all is well.
Got my first ass shot last night the needle stick did not hurt but man the burn of that damn medicine did. It was so funny to see the look on my hubby's face while he got to rub my ass for the 2 minutes he liked it and thank god the kids were in bed is all I have to say..and I will leave it at that....
Tuesday, September 13, 2005
Got mixed news at dr's today....
Oct 81-Apr 87, M.B.B.S, S.M.S. Medical College, Jaipur, Rajasthan, India.
Residencies & Fellowships:
Jul 02-Jun 03, Internal Medicine, SUNYAB, Buffalo, NY
Jul 99-Jun 02, Neurology, JFK Medical Center, Residency, Edison, NJ
Jul 94- Dec 96, Neurology, Post Graduate Fellowship, Institute of Medical
Education &Research, Chandigarh, India
May 88-Jul 91, Internal Medicine, Residency, S.M.S. Medical College, Jaipur,
so see she is quite qualified. And has the best bed side manner of any dr. I have ever met. Some more kinda good news it that I found out today that I can completely empty my bladder. My doctor's office is an MS Clinic, so they have a bladder clinic inside and I had a scan of my bladder before I went pee and a scan after and I definitely can empty my bladder. So now tomorrow have to get a urinalysis to make sure that I do not have a UTI which I probably do because MS and UTI seem to correlate with me anyways. Oh yeah I am going to be back on the monthly steroids. Which I am so glad for, starting tomorrow. This time it will be for 3 days, the only reason she is starting this month is because I asked her told her I had my bad MS headache. She said yeah we can do that, even though I have already had some steroids within a few weeks time. She said it would help and I know that it will.
K some humor to this long miserable post. I don't usually take my chair to the doctor's office because we get free valet parking and as soon as u get in the door by valet there is the info desk. I just go to the info desk and tell them I need a chair and someone comes takes me to my doctor's office. You see my doctor's office is in a big hospital on the second floor down a what feels like an endless hallway. So anyway the guy comes down takes me up to the office and made it very clear that when you need to leave just call for me. Maybe he thinks I am hot. Anyway my dr's office calls for the volunteer and guess who comes...HIM!!!! so anyway he waited with me until my mil's (mother-in-law) car pulls up took me out to it. K my MIL has a low to the ground car so when I get into it I start with my left leg my good leg plus when I am the passenger it is kinds hard to start with the right leg...but anyway he said be careful watched me put my left leg into the car and kinda struggle a lil with my right leg and "helped" me by grabbing my ass to boost me into the car. I always get in and out of her car like that well not with an ass grab but still struggle a lil with my right leg after all it is my bad leg and is like 100time weaker and less compassionate. That's how it is most of the time even when I am doin good. So that was too funny.. way too funny!!!!!
and so the long day begins.......
Man I did my shot hurt sooooooo bad last night. I was a lil prepared but not expecting that much pain with it. I took the prescription ibuprofen before hand for the side effects the only side effect I believe I have is some stiffness. BUt who knows if that is just the MS itself . I am a lil scared for my month on the 22mcg to be done and then have to go to the 44 mcg. The pain that I experienced was right after my husband pulled the needle out of my arm. I think it was the burn of the medication I was warned about so many times. I had Quorry massage it for me for the recommended 2 minutes with a warm cloth which my doctor recommended. That made it feel a little better but man it really did hurt. I don't wanna do it ever again..I miss my Avonex so much. The huge long needle of Avonex was so much better. I have been on these little tiny ass needles before for 3 years and hated them then too, only difference is that medication did not burn as bad as this one does. I just don't wanna have to do these painful shots anymore!!!! My dr promised me that if I would at least try for 6-8 months and still I was not liking it she would let me go back on the Avonex. I know though that the Rebif is a stronger medication and could help me so much more then the Avonex.....at least that is the hope. Because not even the Novantrone is doing me any good the last 2 doses anyway. to me that is terrifying I mean come on I am 25 years old and am gonna be in worse shape than an 90 year old. I need to be in tip top shape I have 4 kids to take care of.
Monday, September 12, 2005
K got the police arrest article...
So Saturday we went to my mom's and had dinner with my grandma. It was yummy. Then Quorry's(my husband) brother and his girlfriend came her and we drank a litte and had a good time. Yesterday Quorry and Josh rearranged my bedroom. Let me tell that was a task all the heavy shit in my room. It looks nice but I do not like where my husband put my puter desk. I will eventually get used to it I guess. It does for some reason look so much bigger. The other nice thing about it is that where they put the bed is right next to the bathroom door. I definitely need that I get up 50 thousand times a night it feels to go to the bathroom now I don't have to walk aroung the bed to get there.
Tomorrow is my appt. with Dr.Garg. I can not wait I hope she can fix me as good as she did last time. I am not wanting to see the results of my MRI I am a lil scared of it but we will see. I am gonna try to not think of it too much or I will add more insult to injury in my stress department lord knows I have enuff stress. Today is gonna be close to 90 degrees and hot so that adds the the physical stress that I already have from way overdoing it yesterday. I do that all the time and I am the one who suffers. Can someone please tell me why I continue to do this to my self????
Friday, September 09, 2005
Got a little more info on piece of shit man....
Okay my rant for the day is done. My MRI was so great yesterday. It was at a new to me MRI place that machine looked like something from the way far future. It was nice and like always I fell asleep.The people were so much nicer there than the previous place I went for my MRI's. My doctor already has the results too. I called today. I will find out the (bad) most likely news about my MRI on Tuesday.My fingers are crossed tightly for sure!!!!
Thursday, September 08, 2005
Great Father....yeah my ass...
okay now that that rant is over....I am so excited!!!! No more PT talked to my docs office yesterday and told them again how much pain I am in since starting the PT and the fact that I could walk before the PT and that you can't really call what I am doing now walking. She said stop right away you may just be one of the few select people that PT hurts more than helps..I said u think?? I have a good reputation of being one of the odd ones. I am one of the 3% of MS patients that has PRMS, one of the even smaller percentage of people that have a severe hypersensitivity to Copaxone. Why do all the few selects for me have to be so damn bad????
Have to go to my MRI soon yeah!!!Gotta shower then leave
Wednesday, September 07, 2005
So tired..It hurts...
When I first checked my blog this morning I was soooo excited because I had 10 comments on here from yesterdays post. I was thinking that finally my MS support group visited my blog...Boy was I wrong. They were all these stupid ass spammed comments. What bullshit. I never had the word recognition on, but didn't know anything about that until yesterday when I saw that when I put a new post on there was a little note about putting word recognition on to prevent this exact thing from happening. So screw spammers anyway.
Man do my legs hurt!!! oh yeah that is nothing new. The nerve pain what a shock is back with a vengeance. My thigh muscles hurt so bad and I am assuming that is from being on that big ass ball yesterday..Because that was the only time in the recent future that I have used my thigh muscles. So now today I am just gonna take it easy. Well as easy as I can my house is a disgusting mess..not really because my house is always spotless..but that is the problem it is not spotless and is driving me crazy. There are dirty dishes in the sink which is rare and toys all over the living room which is against the rules and my brats know that but they are gonna clean that mess up. Oh yeah I have to go get some groceries tonight after dinner. Other than that I am taking it easy. Is all that easy??? No I guess not but I have to keep keeping on I suppose. My brats and hubby need me.
Tomorrow is my MRI and the 13th my dr's appointment. Which I am very curious to see my MRI this time, I sure as hell hope it looks better this time. Although I can almost be positive that it's no better as I am not doing so well. I just don't want to have to get the big N again anytime soon. but if I have to I will do it. I don't mind it at all because really I have only got sick from it once and I quit smoking then so it wasn't too bad. I just really would like to be able to get my medi-port first as my veins are shot now. Would you believe at age 25 everyone who sticks me or draws blood says that my veins are worse than a 90 year olds??? So I really wanna get my medi-port first. I mean I understand my veins being bad I have been on monthly steroid infusions for close to 5 years and monthly Novantrone (the big N) for 16 months give or take. I haven't gotten the big N every month but the way it is dosed for me is 3 monthly doses at a time, MRI, see how it is good= stop for now and continue with whatever med I am on bad=another monthly dose of the big N and start the process all over again. My last MRI was really bad like my whole brain was white. It looked like someone dumped white-out or something on it. I asked the dr. about my brain atrophy she said I can't tell you because there are too many lesions to try to see if there is any atrophy. So that was pretty scary. So I am hoping for the best. I do know that the MRI doesn't mean much per se. I had an awful MRI in June and I was doing better then ever. I was normal for a whole month. I was even driving the truck and going grocery shopping all by myself. That felt so nice to be independent. To not have to rely on anyone else. But that is gone I am now back to relying on everyone but what ya gonna do??
Friday my grandma will be here, I might be going with my Mom to the airport not sure yet. Saturday around 2p.m. we are eating dinner at my mom's with everyone. No dinner at my in laws on Sunday because Marv(father-in-law) is leaving for Texas today he has to fix a machine there. He might have to go to New Orleans and if he does he is taking Quorry and paying him well. That is what he told Quorry. I feel for all of those in New Orleans and Mississippi. I have been praying super hard for them to get through this.
Tuesday, September 06, 2005
Whoa what a long day I've had....
Ok being home isn't so great cuz there is no way in hell I am gonna be able to cook dinner. I think that maybe we will order out who knows??
Monday, September 05, 2005
Brad and the magic giraffe
Didn't get to sleep till 2 ......
The good thing about right now the nerve pain isn't happening but I feel it trying to come on so I'm thinkin maybe if I just dump half the bottle of Neurontin down my throat along with some of my gin to wash it down there will be no nerve pain today...I'm thinking when I go see Dr.Garg next Tuesday I am gonna tell her that the Neurontin has lost it's zest and that I need something else. One of my message boards said Topamax works great too..Have to do some research on it have no clue what it really is.
Dinner last night was sooooo great. I ate more last night than the last 2 weeks combined. It was real nice to have an appetite for a night...Let's hope my appetite doesn't run and hide again on me.
This week OMG so damne busy don't know if I can keep up with everything I have to do. Tomorrow Kids' parent/teacher/student orientation..Brad's is from 12-2, and Andrew's is from 3-4. and oh yeah P.T. at 10 which I need to see if I can skip it tomorrow because there is no way I can do this orientation thing after P.T. it puts me down and out for the day. Wednesday have to go shopping for some food. That's always a task might have to take my wheelchair..Not sure yet I'll have to see how bad tomorrow kicks my ass. Then Thursday is my MRI at a new place I guess their machine is better than anyone else's we'll see. I also have to get my P.T. at 9 a.m. Friday my grandma will be here might possibly ride to airport with Mom depends what time I have to leave cuz we can not afford for Quorry to get any more time off this week. Saturday we are going to my mom's for dinner with my grandma's dinner at in laws of course. I hope I am still alive by Monday because Tuesday I see Dr.Garg.
Sunday, September 04, 2005
Finally got some sleep like 4 hours....
I am still soooo tired and the nerve pain isn't too much better not at all but at leat today I am gonna take a lot more of the Neurontin as I am allowed to go up to 3600mg. Just have to do it slowly. So I am gonna take it every 4 hours as I am suuposed to that will probably (hopefully) help relieve some of this damn pain..who knows I can always add some valium and sleep for a couple of days.
today is my honey's 24th b-day. Yeah!!!!Happy birthday baby!!!!
This should be illegal.....for sure...
Well My DSL is up and running and it is so exciting!!! FAST and I mean FAST. I LOVE IT!!!! I got a confirmation e-mail yesterday that my DSL was ready on my phone line..and got a phone call today.
These gas prices are freaking crazy $3.49 at Gambles and $3.59 at Stop-n-Gas. But some places in Buffalo are like $3.89 one place I saw on the news was $4.13...how freaking crazy...ok yeah another place in Buffalo 97 cents yeah u read that right 97 f-king cents I am gonna drive to Buffalo(if I could drive taht is) except for that was only for like3 hours so guess it ain't worth the drive. But I just got done watching the news they said that the gas is gonna drop some over night which is GREAT!!! I talked to my Grandma on the phone tonight she was complaining about the gas there u know what it was??? $2.69....oh I have vague fond memories about $2anything!!!!!
Friday, September 02, 2005
ok..now I am scared.....
On a lighter note My DSL modem will be here today. The crappy thing about that is it can't be used until after 6p.m. SEptember 7th. that really sucks that I will have the modem and everything I need except for the release on my phone line. but that will be such a great day because it is the first day of school. I can not wait.Then the8th MRI, 9th my grandma will be here, 13th Dr.Garg, 16th Marvin(father-in-law) and Chrissy's(niece) b-day, oh yeah the 5th is my mom's b-day, 7th Billy (other father-in-law)and Jacob my brother from Wyoming..and of course my honey's b-day is Sunday!!!!Man September is busy busy busy!!!!
Thursday, September 01, 2005
It's been 1 week one day....
The wheelchair guy came today and measured me and showed me the one that I would most likely get. It is definitely better than the one that I have. A lot more light weight and more practical. The wheels can even come off of it to fit in a trunk. I thought that was the shit!!!! LOL..how exciting life of a 25 yr.old when I am astounded by the littlest, dumbest shit. Spence that is his name was the guy who helped with a few of my brother-in-laws wheelchairs. What a small world.
P.T. today wasn't as painful but man more tiring than ever and I am sure it will be more painful than the other times come tomorrow. I did a lot of stuff that I have not been able to do in a very long time. Of course she had to help me A LOT!!!!I know that when I am done with the physical therapy it will be well worth it. She still has to keep on eye on me to make sure that it is doing more good than damage. Last time she was here she was a lil worried that it may be hindering vs. helping. I guess we will have to wait and see.So she will be here next tuesday and I told her I wanted her to start coming a little bit later. She was kinda bitchy about it too. I have to get Kaylee breakfast. So she will come at 10 this next time but then has to continue to come at 9 so I guess she will just have to wait if Kaylee wants breakfast while she is here so I can feed my daughter.
My honey's b-day is Sunday. I really wish that I could get him something. I hate that I never have any money. Well I guess I do I put my SS check to pay for mortgage and the truck payment. I told him last night that I wish I could get him something he said well than get me something. I said I have no money, and the money I had is gone on the bills. He said then you did get me something u paid for my truck. How is that right??? We are married it is 50/50 that is hardly a b-day present. Like last year I had some money and got him a new razor and he loved it. Oh well I guess this year will be like every other year (w/exception of last) and I will not get him anything.and even if I had money I would have to have him drive me somewhere to get him something. I really really really wanna get him a laser level and stud finder b/c he wants both of them. Maybe someday.