I don’t know what to say.
I am really all out of words of late.
I really feel as though no matter what I try or do or say, my chronic pancreatitis just gets worse.
I was diagnosed! Finally! After four years and five doctors in two states and three different cities… I thought that meant I was home free.
I was offered a surgery option that while it sounded scary, would completely fix me up.
All those times I was told, “it is a chronic pain issue and you will just have to solve it from that angle” were just bad doctors. They could not find the problem. They were wrong. Oddly enough, the same thing is happening tonight, here in this hospital where I am admitted after begging and after asking them to call the gastro on call that I have asked them to call.
But wait, I am getting ahead of myself.
The diagnosis that was so hard to find? Pancreas divisum. That means my pancreas cannot drain properly due to the fact that it never formed properly when I was in my mom’s tummy. As embryos we have two ducts that drain the pancreas. Before we are born, the ducts are supposed to fuse into one larger duct. Mine did not. One of mine is the width of a hair, according to the dr. who diagnosed me, and the other is simply collapsed. My pancreas cannot drain at all.
I made it work for a long time but high calcium levels, which I had for six years before getting a parathyroid tumor removed, can completely shut that drainage down. Whatever, it wasn’t “just a chronic pain issue.”
It was/ is something serious and seriously painful.
But if a dr. cannot see the evidence for him or herself, they just refuse to listen. They claim to know all about pancreatitis.
They don’t even want to hear what type I have. They don’t care.
Because over 70% of people with chronic pancreatitis are alcoholics.
So, that is the working assumption here.
If only that were true: I would be having much more fun with this!
But no, you tell the dr. “pancreas divisum” and they say,
“Oh, I have heard of that. How do you know you have it?”
Ah yes, then the CT to “prove” the thing. Well dammit, that is what I just handed to you, stupid money running around with an M. D., mine was only diagnosable by upper endoscopic ultrasound and by the one dude in the country who has invented the special scope to look all the way ’round the pancreas.
THIS ONE IS NOT ABOUT YOU!
You are not Dr. House and you didn’t find the diagnosis. It was found by a hot shit dr. in Dallas and I have paperwork to prove it.
But no, that is just too much for their fragile Dr. Egos to take. They must re-discover the wheel each and every time.
It is a Zero Sum Game and the stakes are too high: They are my life.
Since I have had absolutely zero help in Austin, I decided to go see a surgeon in Houston to get his opinion. He removes pancreaii all the time and seemed very confident, bordering on dismissive and arrogant. Without ever looking at my paper work or knowing anything about me, he pronounced: “It is clearly your liver that is the issue here. You need a new liver and a gastric sleeve procedure so you won’t get so fat again.
Well, excuse the fucking fat right out of me. What about the diagnosis in Dallas? Did this dude even want to speak to the doctor who diagnosed me with pancreas divisum?
No. It turned out he was going to order a CT scan and an MRI and look for himself. Great. I mean why work with colleagues when you can do everything yourself?
To be honest, I went on a roller coaster ride of emotions. I mean, a liver transplant? Wow.
A gastric sleeve procedure?
That part sounded great to me. I have wanted weight loss surgery for years and been told over and over that I am too at risk for infection to have one.
So, I had the tests done and called the doctor in in Houston; he did not deign to call me. I was told to go straight to his bariatric surgeon and prepare for a full blown gastric bypass.
What?
What about my liver?
What about my pancreas?
Neither had shown any “importance” on the scan and he felt they could be ignored.
So I said a great big, “Thank you but NO” and regrouped, again. I decided to go back to the source. If Dr. B in Dallas had diagnosed me, then he should be able to give me some options.
So, I did it. I just set up an appointment and decided to see what would happen.
What happened?
I broke my back trying to leave the house to exercise on July 4.
It is so stupid that it makes me laugh!
I mean, really?
How can something so utterly mundane turn into such a disaster?
What the hell is wrong with me? Do I just try too fucking hard?
Maybe. Maybe I should just be a stoner.
Yeah, I don’t know. Moving to a mountain state has always been a goal of mine:)
Right now I want to finish this long-assed damned blog that has taken me weeks to write. I have not been able to complete it because it is so pathetic and because some things have gone down here at home that have made me doubt all that I ever thought I was.
Let’s just say the transitions have not been good here.
My beloved aunt Alice (always a cantankerous second mom to me) has been on hospice since March and we had to move her to a nursing home in June: It was June the 22, in fact. I remember that because it was my birthday.
I have spent weeks fighting through the red tape of bureaucracy known as a Medicaid application. It is really difficult. You either have the 4 to 5 k a month to self pay at one of these places or you go on Medicaid and they estimate your cost based on your monthly social security income.
The business director at the nursing home told me where all the pitfalls would be and to prepare for them; so I did. I prepared very thoroughly.
Two days after working a weekend: night and day on the document, she called me in.
She basically told me I did too much work and to lie on the form so it would look better.
I was unimpressed but at that point sort of stuck.
Anyway, I also got my aunt’s electricity, cable and other bills terminated and had to get her mail switched as well as have letters from the doctors at hospice to explain was she was not finishing her lease at her senior apartment.
They still took almost all of her $900 deposit.
I have quit fighting any of it.
There is no reason to.
My only goal is her comfort and ease through this last journey of her life on earth. I want her to know she is loved and she is supported. The rest of it is just noise.
But, breaking my back (vertebral compression fracture) was just not in the game plan.
I feel angry, sad and mostly misunderstood when I try to express what I feel like in all of this. I feel trapped in a body that won’t cooperate.
I feel trapped and judged in a family that wants me to function as though nothing is happening.
I get angry if my mood changes and I am accused of not being “logical” or consistent about stuff and I feel misunderstood and let down.
The best thing for me to do right now is isolate. I need to put my butt on ice and my body in bed to heal.
I am over dramatic and over wrought. I feel like my world is spinning out of control.
I keep hoping I will get picked up by Dr. Who or Star Trek or the Aliens who obviously left me here by mistake.
Yes, I sound crazy.
I do.
I know that.
I am stopping now….
No more blogs for a bit.
I shall devote my writing to my novel…..
See you there.