Well, I did it. I went to Mayo for 10 days on my own. It was tough but I am very glad I went. The 8 specialists I saw over those days and the never ending tests paid off. I have a diagnosis: overlap connective tissue disease. It is sort of like a rheumatological hodge podge. I have some symptoms of lupus, some of rheumatoid arthritis and some other shit.
There is no cure. I will just fight it with immunosupressant drugs (the one I am on started as an antimalarial).
I need to keep taking my infusions because they will help my entire system. I need to eat right. Live my life stress free and exercise.
And I am trying alternative medicine and taking acupuncture.
I think this has been harder for my family than it has for me.. They don't know what to say to me or what to expect. I upset people and cause others to yell by just being. It is very frustrating. The only solution I know of is to keep to myself about the disease. They really don't want to hear anymore about it.I guess it is frightening and they cannot get their minds around it all. Frankly, it is sort of lonely spot to be in.
But, that is what it is.
Stan is a stress ball from work and the kids are moody. I just cannot go from one to the next with emotional support just now.
My most fervent hope and prayer is that I can get back into fighting mode so I can be there as an emotional screen for the kids. I know that sounds whacked but that is how it works here. Right now, things are NOT working well.
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