Wednesday, May 31, 2006

this is an audio post - click to play

Thursday, May 25, 2006

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

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 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??

Friday, May 19, 2006

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

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 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.......

Tuesday, May 16, 2006

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

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 with that I'm gonna go to bed and try to get some much needed sleep.....

Wednesday, May 10, 2006

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

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'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........

Monday, May 08, 2006

MS walk is over.......

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......

Wednesday, May 03, 2006

Only 4 days left......

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......

Tuesday, May 02, 2006

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

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........
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