The view down here in the fox hole is changing. Horizons are opening up and expanding and some are becoming more blurred and seem quite far away.
I am now several weeks post op for the bladder procedure and two weeks post op for the pain blocking procedure on my upper right side.
I am cautiously optimistic about the bladder procedure. I think it may be working. I had to miss the follow up appointment this week due to stuff I will get into in a minute but I think there is definite progress.
The pain blocking shots I had done in my abdomen area are not working as well.
I am still feeling the pain, although it is not as sharp.
However, I think that may be due to the fact that I am on an increased dose of pain medication right now.
So, that is where I am.
Except, I am broken out in mystery rash and cannot sleep well.
Why?
Who knows?
I really, really don’t have the oomph to track it down anymore. I have had this rash, or some form of it, for over ten years. It comes and goes. This seems to be a particularly bad break out.
It is worse at night and results in raised, angry bumps on my arms. However, I also have intense itching and burning in other parts of my body where there is little evidence on the surface.
The questions from doctors are always the same: “Did you change detergents? Did you change soaps?
“Did you eat anything new?” ” Have you had a skin biopsy of the rash?”
No. No. No. and YES.
I won’t allow anymore biopsies from my right arm. It looks like crap already.
I have had several diagnoses over the years and none of them have panned out.
I have been given multiple prescriptions and pep talks too.
The only thing that seems to stop it is a big, horse-sized dose of Kenalog- (powerful steroid) shot in the hip.
This works better than anything. It is not a medication that is good for you. It weakens your bones and leaves you open to infection but, hey, I am starting to not really care!
I just want this shit put to sleep again.
November 5:
Well, I have been re-miss of late! I have not been writing here or finishing anything because I do not want to be a whiner!
But, I realize that doing this writing is therapeutic and that if it is of any help to anyone else, that is indeed a wonderful thing.
So, in the interest of humanity, I will write:)
The rash I was kvetching about in the above post is gone; At least it is gone from my arms. It has moved locations and I will not say more.
This confirms a diagnosis though: it is lichen planus. Why it comes and why it goes.. no one knows.
It stopped because I had a big whopping dose of steroid. I got it in the form of a second go at the pain injections at the pain dr’s surgery center almost two weeks ago.
Such fun! Oh well, the rash is gone but the pain is still there; partial win.
I tell ya, I just live for the IV pokes and the stress of surgery. It is definitely something I am addicted to, just like pain meds. I can’t tell you how fun they all are. I get so high and I think I am flying…
Disclaimer: That was all patented bullshit.
Irony is sometimes useful when one is accused of being all of the above.
I am still so doctor shy currently that I will hardly go to anyone. I am just bone weary of being blamed for my own illnesses. I know it is common. I understand that doctors are people and want to cure their patients and can’t handle it when the patient is not fixed. I understand all that is underlying the American medical system and its dysfunctions. I just don’t have time for it.
So, grumpy pants here!
See why I have not written!
The current state of being is that I am headed to Dallas to Baylor University Medical Center for another go at my biliary ducts on the 17th of this month. I would have loved to have gone sooner because it hurts like hell, but there is no way as the Super Doc in question will be gone.
I am trying once again to solve the upper right side pain I have.
I saw a new gastroenterologist lady a couple of weeks ago and she recommended this course of action. I respect her and her opinion so I am doing what she says.
The dr. who is doing the surgery this time is purported to be top notch and able to find things other doctors may have missed while they were moving around my ducts.
Maybe I can finally get my ducts in a row!
Sorry, sorry, I have been dying to say that.
I felt much better having talked to this gastro lady. She confirmed that I do indeed have a problem and it is not caused by my use of pain meds.
She also told me that it may not be solvable, but that I should definitely try this doctor in Dallas.
So, try I will.
Ducts in a row… !
Funny!
Right?
I am all out of things to say.
It is sunny and warm in Central Texas and I think I will go outside and play with plants.
It is time to send this long and sad missive off into cyberspace. I keep thinking of just erasing it but what the hell? I mean, no one is forced to read this.
Also, maybe there are others (I know there are) who feel the same frustrations I do.
May all of us tie another knot in our damned frayed ropes and HANG IN THERE.