It has been a while since I have posted. I was concentrating on keeping up with the girls end of the year schedules but the exciting thing is I was mostly able to do that!
I started this blog for two reasons. I wanted my family and friends to have a place to see how I was doing especially through the procedure itself, but also because I knew others were viewing this to get honest information regarding this method of halting disease. I have received quite a few phone calls and meetings with potential patients and family members looking to this as an option. I hope I was and am able to help provide information from a different perspective than their doctors. I’ve realized we all share varying concerns when it comes to this fight but something each and every person seem to have in common is the fear of their future. It’s scary to think you may not be able to walk, or talk, or be the parent, friend ,or spouse you wish you could be. It’s very hard to tell the daily physical and cognitive struggles people face with “hidden/silent diseases” such as MS,lupus, NMO, but I assure you that to them there is nothing silent about it. It is screaming at them on most days. The more I’m speaking to others seeking answers the more I realize education is needed and desperately wanted. I feel so fortunate and lucky that I may have been able to halt any future damage, and my hope is this can become standard care for aggressive cases for everyone who needs it.
Good News- I’m still working out most mornings, I think I am getting incrementally stronger physically. I still cannot run a mile but I’m VERRRRY close now. My vision is still clear at all times of the day, my legs are not buckling, no tingling or strange burning sensations. My hair is growing back. My skin looks better and less dry. I’m closer to being of all the medications! That I am most excited for! My appetite is improving which is nice because I’m actually enjoying the food now instead of forcing myself to eat it. Heat tolerance seems a bit better but I need more time to ascertain if this is a permanent change.
Not so great news-I am losing my eyebrows and eyelashes AGAIN as I type this. All I can say to that is YUCK…and it’s a big tease to look halfway normal for a second and then nope! The hair on my head also looks beyond ridiculous. I know intellectually this is just physical but still I would like to look like I did prior and I’m not there yet. I have spiked multiple fevers over the last month which did bring on some numbness in my right hand. The numbness dissipated in tandem with the fever subsiding which was expected. For some unknown reason when people get fevers or viruses after transplant they re-emerge with previous symptoms. They should go away along with the illness which is what happened both times. I got a slight cold which took weeks for my body to fight and I developed an infection which required two types of antibiotics (and a pretty beat up stomach). My white blood cell count tanked as a result which prompted us to cancel our trip to Europe which was a bummer. It is clear my immune system is in its infantile stages and I need to be more patient. I was always told it is a roller coaster recovery for a year following HSCT and I got a little overconfident thinking that didn’t apply to me for some reason, but it does;).
At the end of each day I still think to myself I absolutely did the right thing, at the right time, and I would do it again. Of course I wish I wasn’t 39 having more in common with an 80 year old BUT it sure beats the alternative I was given. In 6-8 more months when I’m not in that wheelchair I was promised, I’ll hopefully be dancing in Vegas with all my friends;).
Jennie's MS Journey 