I saw my neurologist on August first so I figured I would just write down how I have felt so that I have a record of it. Nothing changed when I saw her, but I haven’t felt good for months. I can’t remember the last time I felt this bad for as long as I have lately. I am sure it was like this before I started Tysabri, but I have been on it now for about seven years, so I don’t remember how I used to feel. I know part of it is the heat and another part I am sure is because of stress. I started a new job in January, so it has been an adjustment in that sense, and I just moved to a different part of the company, so I know have to learn all new stuff which can be stressful at times.
I have been having severe headaches lately, and my sleep has been the worst it has ever been. I only sleep for an hour or two a night which I know is also contributing to my headaches. I know that there is nothing that can be done to make me sleep better because I have yet to find a medication that will help me sleep, so I just have to make due. I am so glad that I have a job and insurance, so I can’t complain about the stress of everything. I know I will learn whatever I need to know soon enough, and the people that I am working with are so friendly and helpful.
I also feel like my eye site is getting worse, and I find that I am starting to read more digital books because I can make the font bigger, so I don’t have to strain my eyes as much. I have to schedule an MRI for October, so I have to wonder if the disease is still stable. Those the few things that I wanted to share so I will have another small update after I get my next MRI and once I have those results.
I haven’t had posted an adoption thoughts post in awhile and recently I had something come up that has to do with my birth daughter and genetics. I know that there isn’t anything I do about the situation now but it still makes me feel bad and like I should have done something different when I was pregnant so that something like this wouldn’t happen but that being said I know that there was nothing I could have ever done to stop this from happening.
I was informed a few months ago the my daughter has Alopecia Areata which is an autoimmune disease like Multiple Sclerosis but her immune system is attacking her hair follicles so she has no hair. She will be ten this year and I can’t even imagine what it has to feel like having no hair and being a kid today. I have spent tons of time wishing I could trade places with her because people don’t have to know that you have MS but when you have no hair everyone can see that.
The reason I feel guilty is because there are strong indicators that autoimmune diseases are hereditary so because I have one she has one and that is hard for me to accept. I know that there is nothing I could have done to stop this from happening but it is still hard for me to know that because of me she developed this condition.
I know in time this will get easier to deal with and I won’t feel guilty but for now that is how I feel. It has also cemented in my mind that I won’t be having kids because I don’t want to risk something like this happening to them. I have another adoption thoughts post coming up because I am so sick of people judging those of us who place our children for adoption. Just because you are looking at our situation thinking we could raise our kids doesn’t mean we should. Anyway I will leave rest of that rant for another post in the near future.
What are you thoughts on this subject?