This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
Such a strange thing to look back on the previous year and to think that one year ago today I got my transplant. The nurses said to consider this my "new" birthday...so Happy Birthday to me!
Honestly there were so many times I was unsure if I would make it to this day. The transplant itself was not easy and although it has been VERY worth it, the Meningitis, Stroke and everything else that came as a result was so not easy. I am not going to get into a big discussion as to how I feel about making it the year or thanking all the wonderful people who helped me get through this past year as I did a lot of that on my last post. What I am going to do is tell you my plans for the future...now that I can be hopeful about having one. Or at least my plans for the next year. Oh, and give you a quick update on my 1 year appointments in Seattle last week.
Last Thursday and Friday as you know we went to Seattle for all of my 1 year appointments. A couple of my doctor's, I'd swear you almost had to pick their jaw up off the ground, were so happy to see how well I am doing, considering how I was last time they saw me (end of May). I have come leaps and bounds. Due to the Bactrim causing my Meningitis and my having a stroke, there were changes on my MRI, and so I am considered (from a data standpoint) the one "transplant failure". Great! If there would be someone, it would be me. Anyway, I am not looking at it like that though because in all reality for me this was VERY MUCH a success and if anything I just may be the biggest success of all...seeing how I not only recovered from the transplant but all the complications that came after. I'm guessing there are not many people out there who are fortunate enough to go through something like I did this year and come out the other side better than ever.
So, everything looked good, all my tests/appointments were cake and everyone was quite pleased with my progress. We were all a little nervous about me getting my childhood immunizations again but it went well. I had NO reactions! YAY! The next day I felt a bit like someone used me as a punching bag (imagine getting 5 tetanus shots....that's what it felt like) but I did so well that we were able to return home Friday night. I didn't even break a fever. So, what did they give me? There were 8 immunizations in all (5 injections). I was given DPaT (Diphtheria, Pertussis, Tetanus), Hepatitis A & B, Polio, Pneumonia and the Hib (Haemophilus influenzae type b...bacteria that is the leading cause of Meningitis). All of the immunizations were inactivated or non-live viruses. I can not have (or be exposed to) live viruses post-transplant. Had they had the vaccines for Flu and Swine Flu I would have gotten those as well, those I need to get here at home.
I go back to Seattle October 15th for another MRI (study mandates two MRI's at the 1 year mark...last being a month later without contrast, the first was with contrast). I will then need to have more immunizations at the 14 month mark and then again at the 2 year mark.
Okay, so the next year....
I am currently going to the gym two to three times a week. After the year I've had everyone has been very cautious, however after a little persistence I was able to get my Oncologist to sign off on me getting back in the gym. I figured if nothing else but to use the treadmill I would be happy. Anyway, he agreed with the condition that I go through the Cancer Well-Fit program. Basically that just means that I go twice a week and work out with a group of other people who have been through chemo, transplants or other treatment. There are personal trainers on the floor and available if we need anything. The service is free and it gives me full access to the gym, so I've been going at least one other time a week too! Anyway, the program ends next month and so I have already submitted the paperwork to join the gym and join the Total Solution program, which means I will still have access to a personal trainer and more! The best part is that I am doing well enough that the treadmill is not the only thing I can use. I am able to use the recumbent bike, upright bike, weights and more. I have actually surprised myself because for the first time in years....maybe my whole life, I can go and exercise for a good hour and a half, sometimes two hours and I DON'T NEED my inhaler. That is just one of the many wonderful pluses that came from the transplant. For the first time in a decade I am loosing weight. It's really a miracle to me.
So I am taking the next year to focus on getting as healthy as I can be. I don't want to jinx anything but I have not been the luckiest person when it comes to my health so I want to do all I can NOW! Plus, my MS neurologist gave me a goal....be on her MS Bike team next September. Um, I think the last time I was on a bike I was 12. :) And, the SHORTEST course is 22 miles. Quite a goal, I know, but if I can do it that would be amazing!
Thursday we are having a big party to celebrate my 1 year! We have a lot to celebrate and I just can't explain to you all how grateful I am at this second chance at life (and an even healthier, better quality life then I've ever had).
I hope you are all well. :)
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)