I do not like my chronic illnesses to define who I am. It is not me. But there are days, when I think, I do not know what it is like not to have pain, or not a problem swallowing, or maybe not a problem with balance, or breathing, or walking, bla, bla, bla. Complain, complain, complain. Not often do I feel this way but just once in a while it hits me. Between the Sjogrens causing my eyes to burn so bad when tearing up, or trying to swallow with no spit, or the Hashimoto's Encephalopathy causing my balance issues, and memory issues, the UCTD causing me all over itching, and fatigue, joint pain then it is the myositis causing me to have a hard time going up stairs, or walking.
The jerking and cramping has gotten worst again, cramping in places I never had it before, jerking where my leg lifts off the bed a good six inches if not higher, it takes me by surprise. If not for one thing, there is another. IVIG has helped, there is no doubt, and has helped with my small fiber neuropathy I am so thankful for that. It has helped with my autoimmune colitis that I have which is huge. I know that IVIG is not a cure for any of the above, it is a hope to slow down the progression of the diseases. I do think it is doing that. But I do feel I need to have an increase back up with my Imuran (Autoimmune suppressant).
I see a new neuro this week. This is frightening to me. I love my neurologist I have had for the past 3 years, but since she has moved five hours away, I have not seen her since last spring. One year. I know I should be seen sooner then that. More often. After being in the ER last month I started to question myself, about not having a local Neuro just for situations like that. Who would know my history? It would be so hard with someone so far. So I took the big plunge and made an appointment with a local man who I was told was very good. I just pray he does not want to start all over again trying to dx me. I will not go through all that again. My ideal situation would be to keep both the one five hours away and the new one. As my case is somewhat complicated so they tell me lol. So we will see after Fri, after my appointment.
Also going to start now with an endo for which I probably should have been going to for a few years now, but just never have (too many specialists) But taking the plunge there too. (I am getting so brave) lol. That appointment is next month.
So until I come back and complain some more, good night and have a great week.
Susie
