Today is my mom’s birthday, 3 days before mine. Happy birthday mom!!! My birthday is here again. Came fast. My lucky day and number 22. I have no plans because we celebrate my birthday on Thanksgiving. That has always been the tradition. Actually we celebrate both our birthdays on thanksgiving because we are together. This year will be no exception but I am actually going to dinner with my mom tonight too. My stepdad and I have to take a trip first into NYC to see my neurologist. This is my specialist over at MT Sinai. Truthfully this is a pain in the ass but thankfully my stepdad drives. We hit a lot of traffic both coming and leaving. It makes for a very long night and that doesn’t include the mental part of the neurologist visit.
This visit will now have to address the major issues at hand with these blisters and abscess Rituxan is NOT the cause of the blisters. I probably won’t have the results of the culture today and we need a game plan if it is MRSA. I’m sure my stepdad will discuss my fall although I am more convinced now that the infection caused the extreme weakness in my body. The supplements for energy need to be talked about so I can get her viewpoints. Finally, and just as importantly, I am sure we will discuss if Rituxan is the right drug and if it is holding me, which it is not. The problem is there isn’t much else out there at this point for secondary progressive other than HCST or stem cell and my neurologist doesn’t lean towards those yet.
It is the last point over the main MS drug that usually wears me down. It’s the part where I hear I know this drug isn’t really helping you not get worse but there isn’t anything else for you. I’ve heard it for years now. I know the speech. “You could be worse without it” kind of rah rah speech because there isn’t anything else at this point. It becomes disheartening after awhile. I know I have a progressive disease but I wish the progression would slow down. Sometimes I feel it is speeding up and these neurologist tests they do show minor declines which make no sense to how I feel. It becomes frustrating. I can leave the neurologist feeling mentally exhausted even though I know all this before I walk through the door. That is why these visits become tough. I am going to the doctor for a check up but nothing can be done to make you better. That is the mental mind f@ck of a chronic disease. Yet once a year I see her and check in. This one on my mom’s birthday and 3 days before my own.