August 18th – One month recovery and Night of 100 LuminariesPosted: August 18, 2014
I’ve been home from Moscow for four weeks. Although I’m not overflowing with energy, I haven’t had severe fatigue. I’ve been told that approximately one month after coming home the steroids would totally be out of my body. I should expect to be really exhausted and may not may not be able to make it out of bed for a few days. I keep waiting but it hasn’t happened yet. Mornings are harder for me, but once I’ve been up for a while and stretch, I’m able to move better.
I’m also prepared to expect a roller coaster ride for my recovery. My old MS symptoms can leave and come back again. It is unpredictable, and there’s nothing that I can do to change this. I need to make sure I get plenty of rest and stay as stress-free as possible. It is definitely easier said than done, but I’m doing my best. So far, I’ve been less fatigued and I’m walking better (not good, but better) than before the treatment. But the spasticity (tight, tight muscles) is back in my calves, and stretching doesn’t have an effect on it.
Since my immune system is still not very strong, my whole family is taking infection control very seriously. We have a bottle of Purell at the bottom of the entrance stairs and at the top of the stairs. Everyone who comes uses it. I wash my hands frequently, carry hand sanitizer with me everywhere I go and wipe down the kitchen counters with Clorox wipes often.
The biggest change involves my husband. Fred loves fruit. He especially loves serving it to other people. He is famous for bringing a huge bowl of cut up watermelon, no rind, to the beach and serving his family, friends, renters and people he’s not yet met his delicious watermelon. At home, he also likes to serve fruit in very large bowls. In the past, he encouraged everyone to use their fingers or toothpicks to get the fruit. He’s been serving fruit like this for many years. This year, he’s using smaller bowls and serving the fruit with plates and forks. I explained that I need to be very careful right now with everything I eat and touch.
This weekend, I saw Lucy and Desi (and Dana & Greg) for the first time since I left for Moscow! I was careful after touching the pups too : )
I’ve not gone out to eat at a restaurant since returning home. We typically don’t go out often.
When my friends Harriet and Joan visited, we had take out from Matts Fish Camp. It’s a wonderful restaurant in my neighborhood! I only wear a mask when I go out to a public place. Although I’m allowed to go out to eat at a restaurant, I can’t imagine wearing a mask and lifting it up to take bites of food. Continuing to enjoy Fred’s delicious home-cooked meals is my preference. I’ve also eaten at friends homes a few times and that was wonderful!
A few Sundays ago, my neighbors had a special surprise event at the beach for me. It had been raining for a few days and this was a beautiful clear night. There were 100 luminaries that were lit and sent up into the sky. It was a huge gathering of love and support with friends from my neighborhood. It was a magical night and everyone who was there loved it.
I want to thank everyone again who planned, contributed and came out to enjoy the evening with me, my family and friends!
Miles, one of my neighbors took most of these photos that captured the spirit of the evening.
It’s still mind boggling that the cost for the Stage 3 HSCT clinical trial at Northwestern is well over 3 times the cost of HSCT in Moscow. While I was not eligible for Northwestern’s clinical trial, I’m still glad that many people do qualify and are able to get treated in the US.
We are still fundraising to pay for the cost of my HSCT in Moscow. I’m trying to stay positive even though we have not reached our goal yet. I am grateful for all the contributions I’ve received so far. Thank you all for your support and prayers.