Well, tomorrow at 11 I go to my neuro's office to talk about Tysabri -- and if I agree to it, then we will plan my first infusion. I'm pretty dead set on doing Tysabri... I've done a lot of research... and being JCV negative.... I really don't have any worries about it. So about the mess up w/ the tests... they ran it wrong the first time & that's the results I was sent to my phone. My neuro called the lab and had them run it the RIGHT way, not once but twice... and it came back negative.
I'm just a bit worried for the fact that I'm not on any medication right now... and I'm sick. So I know my immune system is firing up trying to fight off whatever it is that I have. If I don't feel better by tomorrow I'm going to call my PCP and schedule a appointment cause I can't be sick, especially at Christmas. I laid around a lot yesterday & today because my body just doesn't want to move right now... not only from me being sick... but because of the constant weather change we are having here in Texas.
I went to the store the other day & I used my handicapped parking pass because I was having a really tough time walking & again I get snide comments about me using my "grandmas parking pass".... like really, I don't use it unless I absolutely need it... and whenever I do use it, I get snide comments! Give me a freaking break already... Just because I'm young -- doesn't always mean I'm in perfect health, morons.
I've been keeping my mind off of everything lately with the volunteering I do with MSWorld... but I still can't ignore everything that is going on w/ me right now. I'm looking forward to Christmas though... James and I have everything wrapped (he had to do a lot of the wrapping, cause my hands wouldn't let me) God love him!
James is taking me to my neuro appointment in the morning & then we are going to the store to get me some feel good food lol. Yesterday was a tough day at the house... it was the 4 yr anniversary of my mother-in-law passing away. It's so hard... I miss her so much.
Oh, I didn't go my urologist appointment yesterday -- I have to reschedule, because I could barely even move I felt so bad. So, I will be calling tomorrow to re-schedule that appointment. I really wish I could of gone, but what can ya do... when you can't move, you can't move.
I feel like a crappy mom -- my kids have been living off of take-out lately because I can't get up to make them something to eat. This being sick thing is draining me and making things even harder than they were before I was sick. But this too, shall pass.
Well, I'm going to call it an early night, I will update everyone tomorrow about my appointment w/ my neuro.
xoxoxo
Ashley
Have no shame Ashley, playing this MS game. Believe me, it sucks. Like you said, "This to shall pass...!" And it will. Keep your chin up and give James a hug for me - he seems like a great guy. =;~)
ReplyDeletehey ashley, my name is gary pena, i was nervous to start tysabri also, but i did it, 3 and a half years ago,an i have never had 1 complication, before i started it i was on rebif, an every time i did a mri my dr. would tell me u have new lesions, since i have been on tysabri i have not had 1 new lesion, so good luck
ReplyDeleteAshley... Felt good to read your blog above I now didn't feel alone ... it is as if you were in my head... I have been off my meds for about 3 weeks and starting Tysabri next week. I also am sick and feel it became worse quicker than is should have. Had an set back with MS and had to do 5 days of steroid infusion last month then finished the Copaxone and nothing since. I have heard from many people good.. great things about Tysabri. Each person it at different amount of time on this medicine 5 months to 7 years.. this made me feel much better... Just found your blog and very glad I did... good luck
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