A Message For The Celebration of Light And The Underdog

I have not written in a bit so I thought it was a good time to catch up. It is 4:00 a. m. in the morning and I am infusing my liquid gold so why not write?

A little over a week ago I had my date with destiny in Dallas at Baylor Medical Center. A well known and talented gastro dr. performed an Endoscopic Ultrasound and then an ERCP procedure on me. Miracles of miracles.. he found out why my upper right quadrant of my stomach area has hurt for four years. But, as with all real world miracles, the news is not all good.

So, I have something called Pancreas Divisum. It is a genetic anomaly that occurs during gestation and is found in approximately 10% of the population to varying degrees. For most, it is never an issue, but for some of us lucky ones it leads to a condition known as chronic pancreatitis. In my case, the length of time to diagnosis has left me with scarring and a good possibility of either having all or part of my pancreas removed, thus becoming a diabetic, or, the C word.

My chances of getting pancreatic cancer are pretty high.

First, let me define Pancreas Divisum. As the name implies, it means there are two, instead of one, ducts that empty the pancreatic juices back in and out of (poor description) the biliary tree and liver. Simply put, the digestive enzymes and bile can back up and cause significant problems. In my case, the ducts did not fuse as they should and left me with one the diameter of a hair and another one that is significantly larger but also inefficient.

“How?” you might ask, “has this problem been over looked in the last four years of ERCP procedures, tests and more tests by many “expert” doctors? Good question. The talented man that did my surgery was at a loss to explain why it had never been seen. Apparently it is hard to obtain an image of this sometimes on even the most sophisticated of scans but when I have had other doctors rooting around in there, looking for stuff, there is no real reason why they did not see the obvious.

So, Dr. Burdick, the whiz doctor at Baylor Dallas attempted to open, clean and drain the duct that is at least moderate in size. He stretched it out and put in a temporary stent to keep it open for a couple of weeks. He also cut my sphincter valve that lets the biliary juices in and out of the system, in order to make it flow a bit better. This has already been done and the danger is that repeated attempts just cause scarring.

So what is the diagnosis? Chronic pancreatitis.

What does that mean? It means that I will continue to have pain, nausea and digestive issues when the problem becomes acute or all the time.

What are the solutions to this? At the moment it is watch and wait. In the week since I returned from the hospital I have not had any cessation in the pain or symptoms. In fact, they are worse. This could mean that the pancreatitis is now acute, which requires more aggressive treatment. That usually includes IV fluids, pain meds and complete rest from eating or digesting. Right now that option is very attractive to me. However, getting a doctor to admit me to a hospital for treatment without any ‘hard’ evidence that they can see on a scan or in my blood work is very slim.

I have been to the ER once and called the local gastroenterologist ( a new one!) for advice. I was told I might have an infection brewing in there, which is bad, but have not heard back definitely on the blood work because of the Thanksgiving holiday.

I have been living moment to moment, dealing as best I can and eating as little as I can in order not to be dizzy from lack of food.

I feel like I am losing the battle here. I cannot sleep due to the discomfort and tonight have decided it simply isn’t worth the fight.

I tried binge watching Netflix and reading random weird shit on the interwebs and that has gotten me to the wee hours of the morning.

Quite honestly, I am depressed, angry, overwhelmed and scared.

Nothing clever here.. just the truth.

For those of us with chronic illnesses this is often the case. I am so fortunate to have wonderful friends online that have my immuno disorder and are on the same roller coaster I am on but with their own unique versions of it.

The root cause of all of this is the same it has always been: My immune system cannot fight and when it does, it tends to attack me and not bacteria or viruses.

This is what I know: I cannot get all fixed up.

That is not going to happen.

I can, however, keep trying to plug the leaks in the dam of my body’s upheaval, one stupid complication at a time.

How do I deal? How do I go forward?

Hell if I know.

I just put one foot in front of the other and try not to let it rule every second of my life.
I try to not let my family know just how awful it is because it is painful for them to be helpless bystanders as they watch my slow train wreck.

I have to go on to the next thing.. the next action to make it better.

I read up on pub med and I read the websites that are devoted to each disease and disorder, looking for clues.

I know some things: my family is in constant upheaval because they can never be assured that I will be there for them either physically or mentally.

This is very hard on my self esteem and my relationships, both with my husband and children.

I have a wonderful family. They love me and try SO hard to make it better. But still, there is friction and there is uncertainty and no matter how many times I am told, “it’s not your fault” I still feel like it is somehow.

What do I want? Control.

What do I get? None. Control of any of this is an illusion, just as all of our lives are basically out of our hands.

Ah, but this begs the question; are our lives, our fears, our pain..totally random or is there some higher purpose at work?

I believe the answers to those questions are very complicated.

Is there a G-d, way up there in the sky saying “Katie you need to learn something from this. I am having all of this happen to you for a reason.”


Life is messy and random and there are no promises of ease or success.

However, I do believe there is a power greater than myself that gives a shit.

I understand that power through the lens of my cultural and religious background and study.

G-d is not vengeful. G-d is just not in control of every little thing either. It is a bit like Chaos theory.

In a universe of beauty and precision and unspeakable complexity, we are but specks of light that flicker for a short time. It is up to us to keep our eyes, ears and hearts open to whatever love and joy and peace we can wring from the light within us and the light within others.

For me, that light is G-d.

Remember the story of Job?

Job had a hell of a time. Basically everything in his life went to hell in a hand basket. He traveled the deepest and darkest valleys of the soul but in the end was redeemed and redeemable in the eyes of his Creator and then, ultimately, himself.

Sometimes, if we let them, we are able to see the light of G-d shining through someone else and that light can give us enough warmth to get through the bleakest and toughest moments of our lives.

But the key here, I think, is that we have to be open and risk letting our hearts be bared to a G-d we cannot see and we cannot even touch.

Is this insane? I think it may be!

In fact, I have spent a good portion of the last ten years trying to decide if insanity is the only reason for this concept of the Divine.

But somehow, the answer is always no. Even in my darkest hour I cry out and if I am listening, I know I am heard.

Does that fix anything? Does it give meaning to the suffering? No. It really doesn’t. It just means I am not alone.

I often think of the fact that Jews (me) throughout history, have suffered over and over again and yet still get up, dust off their boots and find their way back to G-d and to one another.

There are all kinds of fancy, exegetical ways to ‘prove’ or argue this point. It is in the Torah and it is in the works of the thinkers and writers of Judaism.

It has been a perennial issue.

I have decided that if someone can live through the agony of the Shoah (Holocaust) and retain their faith, then it is the least I can do.

When we struggle, G-d struggles with us.

When we rejoice, G-d rejoices with us.

It is just a matter of keeping our hearts (which in biblical Hebrew are the seat of the soul) open.

So, that is my prayer…

Don’t let me walk this path alone. Give me the strength and the sanity to push on for one more day and one more ‘fix’ so that I can offer the best of myself to those I love.

And when I can’t offer much of anything, please oh G-d, give me the gifts of acceptance and trust.

I may not be as demonstrative in my faith journey as I used to be. I have come to realize I cannot. I have too much going on internally.

But, do I know what I need to do from here; from 5:10 am on a Sunday morning when I have had no sleep?

Yes, ultimately I know.

Look around me for the lights of the Eternal shining in the most unusual of packages, and listen, and hear the promise that there is hope and there is a hand reaching for mine in the dark, if I can just quiet myself enough to look for it.

The View From The Foxhole

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.


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… !

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.