Life was good when I could walk, talk and breathe 🙂 Now I am getting really, really depressed 😦 I had a taste of the good life, so spending my life in solitary pain sucks! Most people in my building have been kind through my ups and downs. I feel a shift in perception, though. Once folks saw me walking, dancing around, talking, smiling and all that, it seems some think I am just not trying hard enough now. If I could seem normal for 2 weeks, then I should be able to get up off my butt and do things now. The last straws were the voice doc acting like it was my fault he could not “cure” me and the neuro basically throwing his hands up in the air while we wait for insurance to do the right thing. Then there was waaaaaaay too much drama in my local MG support group.
Today my disability lawyer wrote and said “I haven’t heard anything from *** (Medicaid) on the denial since our last email. I did receive some records from *** Healthcare. I am sorry because I know you are in need of this treatment. Everything that you’ve gone through with the IVig is truly upsetting. Certainly, if you have a reliable indication that it may be in your best interests to switch to *** (Medicaid), I would definitely consider that. I’ll try to figure out when they plan to make a decision with regard to the last appeal we sent in. I’ll let you know as soon as we hear anything.”
I am so tired of politics and dissention and back-biting and secret-keeping! Why is it so hard for human beings to do what is right and fair? Some people are gems, others are just plain evil. You know who you are! 🙂
Yesterday the neurologist offhandedly mentioned it could be possible that I don’t have MG, that I might have CIDP….or both together. The infusion nurse I went to in Florida had that, so does a guy here at the apartment. It gets much better with IVIg. I have been studying up. some people can have both CIDP and MG together. Like I always say…..I don’t care what docs call it…just give me IVIg!!!!!!
All day I have been thinking about how my different diagnosis’ have shifted from year to year. I have often felt like my body has a list of autoimmune and neurological problems….then goes down the list trying them all out. I get each thing for a time and then it morphs into something else.Why do I always have to be the oddball? And dang! Can it get any more complicated?
Chronic inflammatory demyelinating polyneuropathy would put together my MG symptoms, dysautonomia, high inflamation markers and neuropathies. I don’t feel like I know hardly anything about CIDP yet. Could this neuro be right? It sort of reminds me when a bunch of docs decided I must have CVID. Any port in a storm. Crap! Glad I said that. I was supposed to get a referral for getting my port flushed. Dang it! I even had it writtten down at the neuro’s office.
I don’t know what to think about ANYTHING! I feel more confused than ever. Today was cloudy and gloomy. Even the low mountains are covered in snow. We just had rain here in the valley. I spent the whole day alternately burning up and freezing….while feeling spaced out.