The One Year Itch

The One Year Itch


Right now I am sitting on edge.  I have had a sleepless night of symptoms that I tried to treat at home.  I have a diagnosis for what is going on, so that is new: I have autoimmune pancreatitis. And, I have taken one pill in the 30 day regimen of steroids I will be on to hopefully control this.  At the end of this pill bottle of 20mg. of daily steroid, I am to undergo a second biopsy, in San Antonio, to see if the treatment is successful.

But right here, right now, I am miserable.  I have been itching, everywhere, internally, all night long.  I have pain and I am nauseated.  I am able to keep liquids down and I have tried taking benedryl and putting steroid crème on the areas of my arms that look like a raised rash.  But, ultimately, there is no relief.

I did not run to the ER with this for several reasons: 1. I need to go to the hospital connected with my rheumatologist.  2. The ER at that particular hospital sucks.  3.  It will do me no good to be drugged and sent home.  However, as the hours tick by, I am less and less able hold myself together: I’m tired.

I have been in and out of ER’s for a year with this upper right quadrant pain and the itching and nausea.  And I have been told over and over that there is “no real reason for it. “ In fact, I had one gastroenterologist, a guy I like; tell me after his third endoscopy, that I “feel pain too much.”

That is not a diagnosis.  I then went to another GI doctor who referred me to this hot shot specialist in San Antonio.  I had a week of hell in the hospital there and was utterly flattened by the lack of communication between the hospital and the doctor’s staff and the other way around.  Since I returned to Austin, my rheumatologist has been trying to get the hot shot on the phone.  This has gone on three weeks since the initial biopsy.

Yesterday, she got lucky; so-to- speak.  I have a diagnosis and a treatment plan.  I am grateful for those things.  But, in the meantime I have gotten worse and worse and I am not feeling too well.  I cannot hang on like this.  I don’t know when the steroid will kick in but right now I am losing my mind.

Do I have a right to be annoyed that it took a year to get a diagnosis?

Do I have right to be annoyed that it took three weeks after my harrowing San Antonio hospital stay to get a diagnosis?

Probably: I do have rights.  I even have feelings.  Oh, and I have question: LOTS OF THEM.

Like, how did my igg infusion come into play here?  My symptoms worsened after I infused yesterday?  Is that a coincidence?

I don’t WANT to spend more time in a hospital.   I double dosed my pain pills, the last two nights.

That was illegal and I know it.  I was just trying like hell to stay out of the hospital. So, WHAT NEXT????

I am at my wits end.

If I weren’t so tired, I would cry.


P. S.   I wrote this several weeks ago.  It is now Mar. 11.  The treatment didn’t work and the doctor in San Antonio proved incompetent once again.  Tomorrow I fly to Florida to see the doctors at Mayo.  I hope they have some answers.