My Platform NMO Rare Disease

Monday, April 1, 2013

Three Weeks

I’ve been home now from Chicago for three weeks now, after undergoing a stem cell transplant on February 27, a month ago.  I will admit that this is a process that is going to take time to get a routine rhythm going.  My family has covered me as long as they could and now with the help of the Lord I am doing it.  God bless Rida, Kitty, and Mother who put their lives on hold to be sure I could live the best life possible during this transition.  Joshua and Dee unfortunately don’t get off that easy they still have to deal with me daily, they don’t seem to mind that much as long as I am home. 

So much emphasis on infection and safety until there is very little time for me to blog.  I felt like I needed to catch things up so that I don’t feel so overwhelmed when I have the opportunity to blog.  As far as infection goes my orders are to stay away from clinics, hospitals, day care centers, and any other public places where people could be sick.  I cannot be around anyone that is aware that they are ill, or has been ill.  If out in public I wear gloves for my protection, I am not allowed to hug/kiss until my immune system is built up again, so hard because I am a people person, and I work hard at loving people and hugs are a part of my love language (on hold for a little).  I am allowed to go out in public now, however not at peak times when there may be large crowds (Easter service yesterday an exception). I have been encouraged to slowly get back to what a normal routine is for me.  The safety issue is as serious as the infection issue is because of the fragile, weakened state the chemotherapy and the transplant left my body in.  It is a welcomed everyday chore to get up and get myself ready for the day whatever that day holds.  I have found that every day is different than the one before, and I have to take each day for what it is worth. The first week I was home it was all I could do was get used to being home again it seemed like everything was so foreign, my bed was the first wake-up call, I was used to using the rails on the hospital beds to turn from side to side, no rails on my bed here at home slowly, I’ve made some adjustments and am doing fine at home now.  The second week I spent figuring out medication, and reporting my B/P, and P to my doctors who were trying to regulate the medications. This past week, I’ve noticed I get tired very easily, so I take frequent rest breaks.  What is good about the breaks is that I recover quickly.  I have pinpointed the areas that I need work and what I’ve found is my overall body is weak and so I am starting with strengthening my core.  I have been evaluated for o/t and p/t but I know that there is only so much they can do the rest of how well I recover will be determined by what I do.

My overall goal remains the same, to get back on my feet, bring awareness about this disease, and finally set up a foundation in which anyone that needs a particular treatment, and does not have the means there will be means to help them. While going through my process I also hope that my experience will help another person dealing with Devic’s Disease experience a little easier.  I hope to encourage, and inspire others to remain hopeful and to keep searching until there is a cure.

The only way the FDA will approved this and other treatments for Neuromylitis Optica (NMO) aka Devics Disease is if those with the disease are allowed to take part in the research efforts.


Post a Comment