It seems I have some answers. I should be happy about this. But, right now I am just frightened and I don’t feel too well. I am over the initial panic, but I have yet to begin any sort of therapy.
Thank you, G-D for my new internist. She is a gift. She put this all together and ordered more tests and made a differential diagnosis (what good doctors do).
I have autoimmune hepatitis. I think I have had it a long time and that makes me sad and angry. Autoimmune hepatitis means that my body is attacking my liver as though it were a foreign body and trying to kill it. This can lead to all kinds of nasty things, including liver failure.
Hopefully, with prednisone and some other immuno-modulating drugs, it can be put to sleep. From what I have read, I will probably be off and on the meds. They have side-effects, of course, but I can’t think about those.
Why didn’t any of the other doctors look for this?
Why did I have to get this sick?
Why didn’t my rheumatologist listen when I told her about my symptoms?
Why didn’t they test this when I spent seven nights in the hospital a month ago?
If all of this is so haphazard, we truly have no control. In other words, medicine is not very advanced. I have been reading and pushing and going to doctors and trying to find answers for this for at least three years. I have been told everything from “You feel too much pain” to “You need a psychiatrist to work on your childhood issues.”
This is all bullshit.
In the meantime I have struggled to live my life and deal with a body that was rebelling. I have known that something was very wrong and no one believed me.
This makes me so angry that I just feel like I can’t deal with all of it for another minute. I want to get fixed now. I am tired of waiting.
I feel bad. My body is swollen and I am nauseated and in pain. I am so tired that I feel like I could just sleep for the rest of my life.
If I do that, I might as well be dead.
Sometimes I feel like life is rushing past me and I am not a part of it. I don’t like that feeling.
I want to take part in my life and not always be sick.
I know, I know, I need to keep my head up. I have to be strong. I can’t show the family how low or crappy I am.
So, what do I do?
I guess I go on… one swollen foot at a time, right?
I have to keep ignoring the other stuff, just like I have so far.
When do I ask the doctor if we have a treatment plan?
I don’t know.
I really don’t.
I guess it shall all be revealed and I need to remember I have no control over all of this.
I do believe there is a power greater than myself and I call that power G-d. I believe that I am a part of a greater creation and that I am loved. I do NOT believe that suffering is something we are meant to have as a ‘lesson.’ That does not make sense to me.
We are imperfect and incomplete and small. G-d is the author of all and is our partner in this life.
We have the choice to trust that at the end of it all, our Partner is looking out for us in some way we don’t even comprehend.
The more theology and what not I have studied the more certain I have become that I know very little.
So, that is where I am today: little, scared and not knowing much of anything.
I guess I will choose to do the only thing I can and live through the next minute with my head up.