I remember packing my stuff and getting my room and myself all cleaned up and ready to go. I sat there in my wheelchair waiting to be discharged which took all day but I was used to being patient. They signed my paperwork and I was off. It felt good to leave that building behind me and sure, I would miss some of the people there but that was not holding me back, I was going home and happy for it!
They gave me instructions on how to be safe around the house, how to get in and out of the shower (using a shower chair of course), how to keep up my exercises and how to get around, etc. They encouraged me to use the walker as much as possible with supervision to make sure I did not fall. After a while I was using the walker on my own to get from my room to the bathroom or the living room. As immobile as I was it felt good to not use a wheel chair. I mean I still needed it but I could technically get around the house without it. It was not easy but I could do it…
A couple months/few months later I bought a cane online. 22 years old and cane shopping, awesome. If I had to use a cane it was going to look good so I bought a replica of one of Dr. House’s canes from the TV show House. I slowly started using that. This was hard because the disease was still very active so about every month and a half I relapsed and went back to the hospital for a week of rest and Solu-Medrol. I was also back in the wheel chair at first… Then I managed with the walker and cane again. Believe it or not it took me much work to get to this point, though it felt better than the wheelchair I was loosing hope again. Every time I took a step forward I felt like I took two steps back. This went on till the end of the year, my neurologist (a supposed MS Specialist) at the time told me that “how ever I was in 6 months would be the best I ever got, this is the course of the disease”. I asked for Tysabri and she just said “I don’t really like to follow the literature on that medication”. Oh really? Because I don’t really like to be stuck in a wheel chair and be in and out of the hospital every month!
… … …
I started fundraising for a stem cell transplant, I was getting desperate (I raised about $3,500 out of roughly the $10,000 it cost, that $3,500 is now sitting in the bank. I wanted my life back and I was so tired of the spasticity! I was even booked to see a doctor about botox injection in my legs to help the spasticity since Baclofen was not doing anything anymore… I tried acupuncture and was just focusing on reducing exposure to heat, exercising/stretching, and of course diet.
“This is the course of the disease…” WRONG! I got a referral to another MS specialist in Riverside who thought Tysabri was a good choice for me. While I waited for the test results to come in to see if I was JC positive (in which case I would not be able to use Tysabri) I continued to focus on eating healthy, avoiding heat, fatigue, and most importantly (for me) avoiding stress! My strategy? Stop caring about things that don’t impact me. 2 months later, after 2 infusions, (before the medication even really started kicking in) I am walking at least a mile (1.5 kilometers) everyday, going on hikes, working on a garden, and picking back up on photography.
I finally felt like the second chapter of my MS life was over and now the third chapter had begun, a new healthy life! I am not sure what will become of my life or where it will take me, but I just know that this was a great learning experience, I mean, it was a horrible thing to actually experience but it was as humbling as it could get, I learned a lot, I changed. There are of course things I experienced that I did not share because they are a little more personal, but it doesn’t matter, they are just “little” things that I learned from, that’s it. I don’t want to relive one single second of any of it but would I change the way things happened? Not at all.