Day +274//9 Months (and one day, because this is posting after midnight)

45 minutes from my house is a fun place I spent many hot summer days at growing up, Michigan’s Adventure. It is an amusement park that has a roller coaster park and a water park and so far this summer we have already spent 7 days there. It’s a good thing we got the season passes for myself, my husband, and my daughter because it has made this beginning of summer way easier and more fun than I was expecting it would be! I was kind of dreading summer vacation because I wasn’t sure how my body was going to do in the heat and I knew I would miss my naps that I got used to while my daughter was in school. The other day the three of us were at Michigan’s Adventure waiting in line for a ride and my husband looked at me and asked how my eyes were. It was 97° (36°c) and we were all sweating like crazy and I blinked and looked around and said, “I’m fine! I’m not blurry at all!” I got a little choked up thinking how much different this day would have been last year. Last summer I simply could not have spent the day out in the sun and heat and that humidity that nearly suffocates you like this. I looked at my husband with a big smile and said, “I feel like I got my life back, like I got a new lease on life!” And that statement has been on the forefront of my mind since then. I’m lucky that I got this treatment done before I had too many side effects, but the few that I had last September, are almost completely gone. I feel like a brand new person! I keep reminding myself that I’m still early in my recovery that nothing is guaranteed, but (I hesitate to say this so soon) I feel cured. My vision is unaffected by the heat, whereas last year I would get blurry vision when I would get the slightest bit warm. I very rarely feel myself losing my balance for no reason, and when I do, it is just a little tip that I can quickly and discreetly correct. Those were my two biggest daily symptoms I really struggled with and that impacted me the most. The cognitive issues I had prior to treatment are still there but they aren’t any worse, so I’m not going to complain about that. For example, I do still find myself randomly calling things the wrong name and getting words jumbled up and just generally struggling to get my thoughts out and carry on a conversation. This doesn’t surprise me that I struggle with that still because almost all of my MS damage as seen on all of my MRIs is in the cognitive part of my brain and that will take time to heal and strengthen. My fatigue is still a daily struggle but that could very well be because we are on full summer mode staying up well past midnight, so I can’t tell if my fatigue is because of MS or my poor sleep schedule-It’s probably a healthy mix of both 🙂
While I’m on the topic of most of my symptoms disappearing, I think it is important to remind you all that the goal of HSCT is NOT to regain any loss abilities. It is not to repair damage done by years of myelin being destroyed. It is to simply stop progression. The improvements that I have experienced are bonuses that not every patient has, and I think we as HSCT veterans often forget that. Some people see all of their disability disappear, some stay the same and have the daily struggles they had prior to treatment, and a few continue to worsen. When I get bummed out by my cognitive struggles and my fatigue that hasn’t completely gone away, I have to remind myself that I did not go through with this treatment to rid myself of those problems, I did it to prevent myself from getting any worse.

Next week we are going on our first vacation of the year and I am so excited to get away and enjoy some good family time. Up north in between the two peninsula’s of Michigan is a tiny little island called Mackinac Island and it is a quaint, magical feeling little place that takes you back to simpler times. There are no cars on the entire island so the only hustle and bustle is that of horse drawn carriages and lots of people on bicycles. We are going with my in-laws for a few nights to celebrate the 4th of July and it will be our first time really getting to spend quality time together since my return from Mexico. I’m so looking forward to the cousins getting to run around and make new memories and I’m looking forward to letting my guard down a tiny bit. I’m going to refrain from any swimming because I am so paranoid about catching something gross from some nasty parasite or bacteria. Every time I think, “Oh I’m overreacting. I can swim.” I read an article about someone having to get a limb amputated or catching some weird illness as a result of swimming. So I’m going to trust my gut (and let my anxiety win) and wait a little longer before I subject my growing little immune system to swimming in any “fresh” water or pool water. The guidelines from the doctors in Mexico suggest waiting until 10 months post transplant before swimming at all. I know of plenty of patients who have not abided by that suggestion and are completely fine, but I don’t want to be the one patient that proves why that guideline is in place. This recovery time is all about small temporary sacrifices and I am okay with being cautious for a year because I believe it will certainly pay off in the long run.

I had my second round of vaccines earlier this month and despite being accidentally given one more shot than I was supposed to get, I got through it easier than I did the month before. Perhaps it was just from knowing what to expect that made the days following the vaccines easier, or perhaps it is that my immune system is getting stronger and it wasn’t so shocked and on overdrive this time! Because of the mix-up and being given an extra vaccine this month, in August I only need one shot, and I’m completely okay with that!

I will leave you with my most recent selfie documenting this crazy hair of mine. Until next month, adios!