Thursday, June 29, 2006

sorry to be coming back all depressing....

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

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

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

Saturday, June 10, 2006

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

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

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

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

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

Friday, June 02, 2006

this is an audio post - click to play
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