Day +61// Two Months!

My immune system is two months old today and everything is progressing as it should be! I’m feeling great and getting a lot of rest. I’ve gotten used to taking daily naps which I’m loving but also finding it quite difficult to make it through the day without one now that my daughter has had a little break from school for Thanksgiving. It makes me a little worried about how Christmas break and spring break will go. Before HSCT I was on a daily pill called Modafinil that helped with fatigue and I might have to go back on it if I can’t make it through the day without a nap, but until those school breaks I will continue to nap when my body tells me to.

One thing that other patients and the doctors have prepared me for is the possibility of temporary new or worsening symptoms during recovery. While in Mexico I experienced a new symptom of phantom warming sensations in my leg and that has worsened but it is not constant and it doesn’t bother me too much. My leg feels like I have something warm sitting on my lap on my left thigh, it reminds me of when you have an overheating laptop on your lap, but when I touch my leg with my hand I can feel that it is not actually hot at all. Just another “joy” of having an invisible disease, I guess! I’ve had weird phantom sensations before but never this warming feeling. This is likely temporary and just a part of the recovery rollercoaster.
Prior to HSCT, my absolute worst symptom that I encountered daily was heat intolerance which would make me lose my balance and also make my vision blurry whenever I got even a little bit warm. Well, yesterday was Thanksgiving and we had some family over to celebrate and for the first time in 2 years I vacuumed the living room (with a face mask on to keep out dust and allergens) and didn’t get overheated or dizzy or blurry! It felt like a great success!

I’m slowly but surely getting back to normal life. Yesterday we had our parents over to celebrate Thanksgiving and it was a nice small get together but it made me a little sad thinking about how we missed the big family get-together. We usually go to Lansing to spend the day with Dave’s family but I wouldn’t be able to eat any of the food since it sits out all day and I didn’t want to be in close quarters with so many little kids, especially since the ones we are closest to aren’t vaccinated and I’ve been instructed to avoid anyone who is unvaccinated for at least 9 months. So we skipped out on the big party and just had our parents over for dinner. I am so incredibly thankful that I have been given the opportunity to get this treatment done so early in my disease before MS had the chance to do too much damage and I am trusting and believing that this will be my cure. That can only happen if I take this recovery time seriously so I will continue to follow doctor’s orders and listen to my body and enjoy this new life I’ve been given.

Hair update! It is growing!!! I still have little tiny prickly hairs but longer fluffy soft hair is growing in. It is so fun seeing how quickly it is growing in. It is looking very light in color and so far it is straight but I’m still holding out hope for curls.