Archive | August, 2012

FAQs About Amy Going Ninja All Over MS

31 Aug

Quick answers to my most asked questions:

How’s the weight gaining going?  I have gained 10 pounds and hope for 5 more before we leave.  It’s work, but I have a nice supply of shakes made by good friends to supplement and I also discovered that Twizzlers, America’s dumbest candy ever, are 130 calories for three of them.  Onward!

What are you doing in Moscow exactly?  I’m going to have a portion of my bone marrow stem cells removed, followed by the partial shutting down of my unhealthy immune system using chemotherapy.  I will then receive my healthy bone marrow stem cells, at which time my immune system will begin to rebuild with no memory of multiple sclerosis.  Easy Peasy.

Is it really easy peasy?  No.  Eric and I will be in Moscow for six weeks.  I anticipate being very sick, losing my hair, losing all this weight I’m packing on and losing six whole weeks with my precious kids.  MS will take quite the wrestling match to ditch, but we’re up for the tussle.

When are you leaving?  Tickets have been purchased and appointments in Moscow made for us to leave on September 27 (arriving September 28) and have our first appointment at the hospital on October 1.  If all goes smoothly, we have return tickets for November 13.

How is the fundraising going?  We are currently at just over $38,000 total in raised funds.  After airfare, lodging expenses, visa expenses and etc, we must also be able to pay the hospital $40,000 USD.  This is a great time to donate, if you have been waiting for a great time.  🙂 We will continue to raise funds to pay for after care and physical therapy when we return, but we need to meet this first leg of the home stretch first.   The cure for MS did not come at a good time for my family financially, but I have never worried that it wouldn’t happen.  Thank you for everything you have done to keep this a worry free endeavor.

How are you feeling?  In a word?  Awful.  This must be what marathon runners feel like at mile 25.  I spent the last 17 years believing that MS was a lifelong marathon, so I didn’t let myself think about stopping.  Suddenly I am seeing mile markers and I know that it is almost over and the thought of that makes me realize just how miserable I am.  (My day 0 will likely coincide with the day I was admitted to the hospital as a quadriplegic 18 years prior.  Crazy, huh?)

Thank you for following along and keeping us all in your prayers.   Our kids are remarkable people and I marvel at their responses to every step of this journey.  I covet your prayers for them just as desperately as I covet your prayers for Eric and me.  What a wild and crazy year it has been, and we haven’t even reached the peak of the roller coaster yet!


World Traveler in Zero to Sixty

4 Aug

Juarez, Mexico. This is the greatest extent of my world travels and it was just a one day visit when I was barely 22 and Eric was 20. Border patrol searched us on the way out and were amused at Eric’s marionette doll purchase. I was on immune modulator injections at the time and they were not amused at my syringes. Ah, youth.

Got married, had kids, homeschool the darlings; disease quietly progressing like a steady drumbeat throughout and, next thing I know, I’m 34 and Juarez is still as far as I’ve ever traveled.

Three days ago I read the last piece of information I could find about the HSCT protocol at Pirogov, the hospital in Moscow.  I read every thing I could find about the hospital, that status of Russian healthcare, reviews from patients I could contact and anything available about every drop of chemicals that the hospital in Russia might intend to push through my veins.

I am as confident as a person can be, given the circumstances, that this is the right choice for me and that it will be an invaluable opportunity for other auto-immune patients to learn about this facility through my personal accounts. I recently learned that I will be joined in the hospital by Phoebe, an MS patient who shares my goal of stopping this disease. Check out her blog and give her a big “Thank you!!” from me because she is going ten days before me, which will help make the unknown a little less unknown.

At this exact time last year, I didn’t know that I was one month away from not being able to wear my wedge heeled shoes and on to using a cane more often than not. I was wearing my super cute wedges and certain that Juarez, Mexico was going to be forever the most extreme, dangerous, and exhilarating international trip of my life. I was also certain that MS was only going to keep on its course of destroying my spinal cord and brain function.

I think we all have to get a little uncomfortable with anything before we are ready to change. This is true about carpeted bathrooms and it was true for me and my quest to dump the MS. When multiple sclerosis made me box up all my cute shoes and give them away, I started to get concerned about where it was going to end and I did what I always do when I get ready to fix something: I got real friendly with Google.

This year has been a blur to me and it feels like everything came to a screeching halt three days ago when I read the last thing I could find about Pirogov, Moscow, Russia, the entire procedure, and Russian food and suddenly realized, “ohmygoodness! I’mgoingtoRussianextmonthtogetabonemarrowtransplant!!”

I am not surprised to find myself here, because resting my needs on God has always been an adventure, but I am a bit dazed by the speed.  I told someone yesterday that Eric and I were leaving for Russia on September 27.  “Next month?” was the reply.  Never talk like that to a cognitively challenged woman who thinks we’re still in April.  Head —>Floor.

Thank you all again for joining me on this leg of my journey. Your prayers are priceless and your financial assistance is a literal God send to me. Stick around; it’s about to get interesting.