I have not written too much these last few weeks. To be honest, I didn’t feel up to sharing what is going on and I have not felt strong enough to sit and let the words flow.
I keep thinking of the phrase, “long, dark night of the soul.”
And I keep hoping it will be daylight soon.
Today, there is daylight and I can see enough to write. But, I don’t want to come off as complaining or as over dramatic. I often feel as though I have said too much.. been too honest, etc. I guess this is just an occupational hazard of being Katie.
So, chronic illness is… chronic.
And it doesn’t matter how many chronic illnesses you have; you can have more.
The math just isn’t fair, is it?
Well, I am quite certain the math isn’t fair to people in all kinds of ways in this world. I am only experiencing my version, in my time, in my way.
I have to remember, always, that my struggle is real to me and to those who love me, but that for many, including my family and friends, enough is enough.
They cannot see or hang in there for the roller coaster ride I am on. They only wonder, “What is it now with her?” or “Why doesn’t she get better?”
What I am saying here is never put in an overt manner: It just is.
People quit calling you and they quit asking if you are better. The answers are just too overwhelming, even by association.
Trust me, I am overwhelmed on a daily basis: so I get it.
So, what can I take away from this lesson?
Be careful what you share, with whom and how often… kind of like sex.
I mean that. Sharing at the level I am at, which is often really hard, is really intimate.
I have finally found that I don’t want to be intimate with that many people at once!
My husband and my kids are my rocks and my redeemers.
They give me purpose on the darkest of days.
When I want to literally cash it in, I remember that they want me here and that I am worth the trouble to them.
I hang onto that, pretty tightly at times.
On better days, I make plans.
I make plans for the next day or the next week or for what I want to do in the next few months or year…
Then, as the plans get undone, I tend to get depressed and angry.
So, what can I do about that? I can either continue to be a Fool, who believes that it will all be fine, somehow… someway.. someday… or I can live moment to moment.
I am not good at the moment to moment thing but I am learning.
It may be blindingly apparent to those around me that I am sick and seem to not get better, but it is always news to me!
I have some sort of self protection mechanism that keeps me from comprehending that most of the time.
But this latest go ’round, with chronic pancreatitis, has left me breathless and defeated.
On the good days I get to have, I want to run as fast as I can and as far as I can away from any mention of this problem.
But, I am learning that this one has me by the yayas ( girl yayas so… that doesn’t make sense).
Anyway, I have not had a fight this nasty that I can remember.
Despite all my best laid plans, I keep getting really, really sick. The pain is uncontrollable and I cannot eat or drink or make it out of the house.
So, in my last two blog entries I have explained that although I was a candidate for a potential miracle surgery, I was turned down.
At the time, it made sense. After all, if a doctor doesn’t want to do a big surgery on you, that is a good thing, right?
Well…
I don’t know.
As I go back over the entire scenario in my head, I realize that some things were amiss.
I also realize that without the surgery, I am not going to get a lot better.
At least that is what I understand at this point.
So, life threatening surgery or constant pain and turmoil?
The choice is easy and obvious for me: I want the surgery.
But, I cannot just wave a wand and have it done. Especially since I was turned down.
I have gone back over the documents from the visits to the specialists in Dallas and back over my own state of mind at the time.
I didn’t come off too well.
Yes, I have autoimmune disease and primary immune disease.
Yes, I understand there is a chance my liver will not rise to the challenge of accepting new islet cells transferred from my burned out pancreas.
But, and I think this is important: I am not crazy.
Well, not crazy in the way that I came across to those doctors.
You see, I have done my research, a bit late, but I did it.
Part of the vetting process for this type of surgery is whether or not the doctor thinks you are psychologically strong enough to withstand the horrors of the experience.
I am pretty sure they flunked me on that out of hand. It isn’t fair or nice that happened but I am sure it did.
It is a long story but suffice it to say, I was a shivering, crying wreck every time I saw one of those doctors.
When it came time to pull together a team of willing specialists, they decided I didn’t have the ‘right stuff.’
I may be all wrong about this but I don’t think so.
It all came at me pretty quickly.
I was diagnosed in November, after four years of suffering, and then multiple, back to back hospitalizations.
When I spoke with the chief of the transplant team, I had been barfing in the car for three hours.
Also, the hepatology (liver) expert on the team knew me from earlier visits here in this area, where he has a once a month clinic.
He had been unable to diagnose me but at one point had given me his e-mail address.
When I was hospitalized in June for high liver enzymes, I was supposed to be transferred to his hospital in Dallas. Unfortunately, the Scott and White hospital in Round Rock was unable to manage that or to even call him when I asked.
So, stoned and frustrated, I e-mailed him. I may have even done it a couple of times.
When I saw him after that he told me, “you need to work on your doctor and patient protocol.”
OK.
The head of the transplant team in Dallas who turned me down mentioned that this particular doctor, the hepatologist, was one of the main reasons I was turned down. He didn’t say, “it’s because you are mental!” But, he did say my liver was unstable.
They could have easily brought me in for further testing.
That was not offered at all.
So, it has taken me a few weeks of agony to piece this altogether.
What can I do?
I am going to slowly and methodically try to be reviewed from the bottom up, by another team.
If their answer is also no, then that is the answer.
I am hoping to be reviewed by the team at University of Texas Medical Branch at Galveston.
We will see what we see.
In the meantime, I shall continue to be a Fool. I shall continue to turn my blind eye to all the crap that is going down with me.
But, I will not run and hide each time I hit a pot hole.
I have to give this a go again, even if it is humiliating and painful and expensive.
I humbly ask for your prayers and/or support in this.
I can definitely feel it when the “vibes” get going in a positive direction.
I am no virgin to this process now. I know it is ugly.
I know the surgery is ugly as well. But, I am ready to see what happens.
I want my life back.
It may be a flawed and chronic life, but if I can eat and not be constantly nauseated and in horrible pain, I will take it.
Thanks.