Saturday, July 18, 2015
Thursday, July 16, 2015
Wednesday, July 15, 2015
I just got back from my neurologists office. I saw a nurse practitioner and decided to tell her my Chicago plans. She said that I was having a relapse right now and I needed steroids. I said that I wanted an MRI first. She said she'd talk to the doc. She told me that a relapse can be caused by other things than active lesions (what?) and that steroids won't calm down active lesions in my brain anyway (WHAAAAAAAAT?) So I should go in and get IV steroids asap. I told her to tell the doctor that I wanted an MRI to document the relapse for Dr. Burt and THEN I can have steroids because "I know you know what you're talking about, but I still don't really believe it". I'm glad the Dr obviously agreed with me.
As for HSCT support, she'd never heard of it. I told her that I wanted to piss off my brain, get a few angry MRIs and get to Chicago any way I can. She said "No judgement" but I could tell that she thought I was nuts. I don't care. I got what I wanted. The MRI is being scheduled.
She said that it looked like the Tecfidera wasn't working anymore and that I might want to consider Lamtrada. It's a series of infusions that partially knocks out my immune system and let's the stem cells regenerate by themselves. To me it sounds like HSCT Lite.
I did some research and asked around to my HSCT peeps. Having a Lamtrada infusion will exclude me from the Chicago study but other clinics would still treat me ($$$) . It is also much less effective than HSCT.
So, I'm holding on to hope that my upcoming MRI and steroid infusions will help me prove to Chicago that they should accept me. I've joined the waiting list for Mexico just in case. If I'm accepted into Chicago I can cancel Mexico. If I'm not accepted I can sell my soul so I can get the $50G I need to go to Mexico. Argh, that's a lot of money.
Is it just me or is it ridiculous how hard we have to fight to get a treatment that we believe in?
Oh! I almost forgot! My awesome friends from all over are seriously coming to my rescue! They are planning fund raisers and bake sales and silent auctions. Other friends are donating items for the auctions. It's crazy. I can't say thank you enough! So, there is hope that I might be able to afford Chicago or maybe only sell half my soul for Mexico. My good karma is finally coming back around. I need to start knitting silent auction hats...
In other news, my kids are still awesome.
Saturday, July 11, 2015
It's been so hot here in the Adirondacks, it's really making it hard to function. Last week I received an email from the study in Chicago. Because I haven't required steroids at least two times in the last 12 months and my most recent MRI didn't show any new lesions I don't qualify for the study. But, they did tell me that if my next MRI shows any activity to send it to them and they will reevaluate.
I feel like I'm being punished for being a "trooper". I've had relapses during the last year, but I haven't gone to the doctor. I've had a few that caused body numbness, migraines, dizziness, I could go on... My outlook is, if I can function I'll just wait it out. It'll go away eventually. I hate the way steroids make me feel and I hate having all of those extra chemicals and hormones in my body. Anyway, steroids don't cure anything. They just make it go away faster. In the past I never saw the point of complaining or going to the doctor. There was no point. It's incurable. This is my life and I have to deal with it. But now there's hope! It is pretty amazing.
I have an appointment with my neurologist next week. This time I'm going to complain. I don't feel well! I am constantly dizzy, lightheaded and have several migraines a day. It's hard to walk and hard to keep my thoughts straight. Maybe I can have an MRI and maybe it will show activity. Feeling crummy is kind of my default setting. Is that just how I am now or does that mean I have active lesions? I have no idea.
Well, do me a favor. Think unhappy, lesioney thoughts for me next week. If this complaining plan doesn't work I'm going to have to go out of the country for treatment. I don't know if I can afford that. Argh. I'm so sick of feeling sick!
I need a nap.
In other news, my kids are awesome. :)
Sunday, July 5, 2015
Note in memo section: In honor of Kelly Gaiser
Please mail to: HelpHopeLive
150 N. Radnor Chester Road – Suite F120
Radnor, PA 19087