I don't know if I should stay here?

March 22, 2010

I have known for years that something was not right. Despite the fact that I had

known that pancreatitis was part of the puzzle, but no where near the complete

puzzle. Flash forward over 14 years later, and finally I have some answers.

I have been given some names such as PA and Sjögren's Syndrome, but nothing

concrete. I have a positive ANA, but not high enough to say Lupus(funny I didn't

know there were levels of an ANA) I will be honest and say that I have not done

much research on this, after being chronically ill with a major disease I am

tired of researching, currently.

I can't take biologics because of the positive ANA or so I have been informed. I

can't take steroids because I have diabetes and have had an islet cell

transplant, and can't take methotrexate because I have chronically elevated

liver enzymes ( chronic non viral hepatitis). This is because of many things, no

one seems to know either. There are many possibilities the pancreatitis has

damaged my liver, the surgery to remove my entire pancreas and put the islet

cells on my liver damaged my liver, or it could be the Sjögren's Syndrome (this

is a new idea) Could be the unknown Sjögren's Syndrome helped damaged my

pancreas and thus the liver. The old chicken vs the egg. I guess I am at a loss

here, I don't really fit into any category here, and won't be actually receiving

any treatment for the PA and Sjögren's Syndrome any time soon. The only thing I

know is that I am becoming more ill,I am spend more time in bed, maybe it is the

change of seasons? Life is becoming more difficult, once again. I am already a

chronic pain patient because of the pancreatitis (a fight I would wish on NO

ONE) When I got the diagnosis of the HLA b27 positive info and the positive ANA,

I cried, for once I was vindicated. I stated " So I am not crazy " , and she said "

no, you aren't crazy, I don't know what to do with you, but your not crazy " .

Now, I know what I have known all along, something is wrong, but nothing can be

done. Can I leave this group and come back in the future? I really at this time

have nothing to contribute and I don't want to just be a complainer. I am just

getting over having the most awful flu symptoms, everything ached, chills and no

fever would have sworn that I was coming down with the worst case of the flu,

which has not occurred.

Atwell

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