So, about those seven questionnaires…
When I logged into MyChart to confirm my virtual appointment, there was questionnaires I had to fill out. I always have to fill about two or three of them. The same questions every year. It’s old hat. But this year, it was different.
The questions that they were asking were new to me. For the first time, I had no qualms answering them honestly. And a few of the answers are, “I cannot do that.” It was not hard for me to be honest in answering this questions after having this disease for 25 years because my life has definitely changed now that I am homebound. I have a new mindset. Oh, it hurts all the time and there’s nothing I can do about this! I just have to endure it.
When I confirmed my appointment for Wednesday, I told my Mom about the seven questionnaires that I had to answer and I told her the questions they asked. I told her it shocked me and I wasn’t ready for those kind of pointed questions, but I have had this disease for 25 years so they know the progression and they know where I pretty much am now.
But, what further shocked me was the fact that my mom has been answering those questions regarding me for years now. She answers the questionnaire that we get every three years from NelNet.
That’s the company who held my student loans. When my loans were discharged because I am physically disabled and on Disability, they send a questionnaire every three years to ask if I am still disabled. My mom takes care of that because,OF COURSE I am still disabled!
Put these questions they asked things like if I lost my train of thought. There were responses there were five I could choose from. No, rarely, somewhat, often, and every day. I answered somewhat to as much as I could, but it also asked if I dress myself, and I could honestly answer with much difficulty! Because at this point, I still can do that, but I think that’s going away pretty soon. my mom helps me with that. She has been helping me for a while, she just helps a little bit more now because of the progression of this disease.
I think it’s funny how when I was first diagnosed, I thought they would fix me. But now after being in the system for 25 years, and seeing all of the loss of my abilities, they can’t and I have to do this myself! So that’s what I do, that’s why I am on supplements because they make me feel better. Dr. Chamas give me a referral for acupuncture and Reiki because I’ve had both of those and they do help me feel better.A cure is BOT coming. I just have to endure this. Sometimes that gets rough for me and I cry. I was kind of there yesterday, but it is what it is. I hatesaying that statement, but it’s true.