Scenes from the Immune System Wars

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.”

No.

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 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.

I have not written here in a while. I have been too busy fighting and living. I have been down in the trenches of the immune system wars, fighting back, setting mine fields and running back to my trench, hoping the bombs go off and hit the enemy and not me.

What do I mean by this?

I have decided to change my approach and see if maybe I can gain some traction over what at times feels like a an out of control freight train.

I have been fighting the pain in my body.

This past Friday I had a procedure done on my bladder. It is designed to help stop the constant bladder spasms I have that are called ‘Interstitial Cystitis’ or IC. IC is what causes me to often have inflammation in my bladder and up into my back and kidneys. I am not necessarily infected, just in pain. The cause is autoimmune and means that the bladder lining is torn and ragged in places. In other words, my body is attacking its own tissue.

I had tried this procedure in 2011 and gotten relief so I decided to go for it again. After knocking me out, the urologist fills my bladder up like a balloon with sterile water. She then drains it and refills it with a solution of soothing medication and wakes me up. I have to hold that in for an hour and a half. Trust me, you Do Not want to pee after all that.

The procedure itself is painful but I believe is starting to provide relief. The idea behind it is that the bladder will regrow its lining and you will get to start over with a lining that is not all fractured and broken.

In two weeks, I see the doctor again and she will fill my bladder with a solution in the office. This will provide more soothing medication and we will see from there. The last time I had it done, I went through six weeks of these ‘instillations’ in her office. They are miserable but seemed to put me in remission so well worth the effort.

This coming Tuesday I am having another procedure. For this one I am having a nerve blocking shot, guided by radiography, into my right spleen area. The shot will contain some cortisone and hopefully help with my right sided pain. I am going to be knocked out for this one too. They offered to do it with me awake but I declined!

If it doesn’t work, there are more options. I figure it is worth a try.

I was scheduled to have yet another surgery on that side of my body but decided I was tired of trying to fix whatever the hell is going on over there. No one really seems to know what it is and it has not killed me yet, so I just decided that blocking the pain is good enough for now.

I have to just live my life and quit worrying about getting myself all ‘fixed.”

Fixing everything is NOT going to happen.

I will settle for just feeling pain free.

In the meantime, I am taken an increased dose of pain medicine and I itch like crazy. Is it the pain med?
I don’t know. Should I pursue a doctor’s appointment about it?
Perhaps.

But, my feelings these days run along the lines of survival is not good enough even  if it doesn’t come with a modicum of comfort.

Thus, pain control and sleep are my top priorities.

I want the rest of it to go the fuck away.

It won’t, of course.

But hey, at least I am getting some new ammunition and continue the fight.

I have had a really crap couple of weeks with pain and the rest of it. I’ve been in and out of the hospital for a quick 24 hours of hell, spoken down to by doctors, and had lots of nasty tests.
Out of all of this, I have learned some lessons that are hard but are things I had learned before. Apparently I just needed to suffer more to get them down really well:
1. NEVER TELL ANYONE YOU ARE IN PAIN, ESPECIALLY A DOCTOR.
2. NEVER ASK QUESTIONS THAT MAKE THE DOCTOR LOOK LESS IN CHARGE.
3. NEVER CAUSE YOUR FAMILY MORE GRIEF THAN NECESSARY BY BEING A PAIN IN THE ASS PATIENT AND DOING THE ABOVE TWO ITEMS.
4. GET CLOSE UP AND CUDDLY WITH ANXIETY, PANIC, HELPLESSNESS AND SHAME.
5. YOU WON’T DIE JUST BECAUSE YOU FEEL LIKE IT.
6. IT TURNS OUT YOU CAN’T ACTUALLY DROWN IN YOUR OWN TEARS.
7. LIFE DOES NOT ‘OWE’ YOU A BREAK.
8. CHRONIC ILLNESS DOES NOT GET BETTER; IT GETS WORSE.
9. DO YOUR CRYING IN PRIVATE.
10. DON’T PUBLISH THIS KIND OF NEGATIVE SHIT IN A BLOG: WHOOPS.

I think any and everyone with a chronic illness or even a fleeting illness is faced with this: We have things we want to go out and do and then all our best laid plans fall through.

It is by no fault of our own that these things happen but they do anyway.
For one reason or the other, our bodies betray us at critical moments.
For me, it seems to happen every damned weekend lately.
I wait all week to have time with my husband and my family and then I spend the time in bed or worse, in ER.

It wears me down and chips away at my soul.
My mind has all sorts of fun and fulfilling things for me to do but my flesh..
This flesh is WEAK.

I have been writing a lot lately about how to come to an equilibrium of loving myself even though I am a spirit housed in this faulty body.

Some days I am more at peace with that than others.

Today is not really a peaceful day. It is not the worst day, but also not peaceful.

I am sitting here and infusing my gammaglobulin, hoping it will give me a burst of energy.

Maybe, I will make it out to brunch with my husband.

I feel like the world’s worst partner most of the time.

It is hard not to.

I don’t mean to whine here. I just feel tired and tired of being sick and I cannot stop wishing for better times.
These last three months or so have been rough.

This is normal for what I have: lots of ups and downs and new symptoms no one understands or can quantify.
I get tired of enumerating them for doctors who shake their heads and look at me like I really do have two heads.

So today I say Mi Shebieberach (prayer for health and healing) for myself and for all of us out there that need it.

Let’s get our hearts and minds in the game. Maybe we can drag our unwilling bodies along for the ride.

I write today not from the top of mountain but not from the bottom of a valley either.
I think I am on the soft cleft of a hill. The kind that rolls between a landscape where things look pastoral and bucolic from the outside but if one is to examine them closely, they are teeming with all sorts of creepy crawlies.
Nothing is ever just a simple, sweet, rolling, green.

But, all of that being said, I think I will lie back for the day and try to enjoy it from this  less than magnificent perch.

I am learning, albeit slowly, to find a place amongst the creepy crawlies.

After all, I am one of them!

Yesterday, as I had my throat swabbed for strep for the upteenth time this year, I had a sudden visual image of myself sitting there on the exam table with bug antennae sticking up through my hair.

My hair is generally pretty crazy these days anyway. I wonder if anyone would notice my antennae?

I let my mind wander further and could almost physically feel the hard shell of a beetle forming on my back. How useful it would be!
I could fend off my enemies and avoid being crushed by every little thing if I had a hard shell. If I could, I would choose a lilac colored shell with soft colored, orange spots.
My antennae would be pink with sparkles, of course.

Anyone (especially doctors) would know from looking at me that I am exotic.
I wouldn’t have to explain to them that I am different than the rest: that the tests don’t work or that my everything always hurts.

It would be so much easier.

When I am happy, I would give off a scent of lavender and produce bubbles from my antennae.
When in pain or unhappy, I would give off the scent of…. hmmmm…..
I don’t think I should finish that thought.
Anyway.

So today I am looking up at the world from my vantage point; the cleft in the hill.
I realize I am no more than a tiny, albeit exotic bug, but, I can still enjoy whatever is on offer today.
Will a giant called Life smash me with its equally giant and uncaring hiking boot as it strides across my spot?

I hope not.

I hate having to scrape myself back together.

I am running out of glue for my shell and you can really see the fracture lines where I have been put back together if you look closely.

But, Life and its giant hiking boot be damned.

I am going to lie here in all my glory: Fractured and patched, lilac and orange and with my sparkly pink antennae pointed towards the sounds of laughter.

Note from the author:
NO PSYCHOTROPIC MEDICATIONS WERE CONSUMED BEFORE WRITING THIS BLOG!

I chose my title carefully for this post. You see I have found my way back to some places I thought I would never go again.
I have found my way home to my relationship with my Higher Power as I understand Him/Her and I have returned to the 12 step group I call home.
All of this is new and different than before but so deeply satisfying. I have to do the footwork!
I have to reach out!
But, I am finding that when I do, even on a dark, dark day, there is a well spring that comes from some other place inside or outside of me. It gurgles and burgles with hope and light even when there is none.

Has this changed my diagnoses? No.
Has it changed the complexities of my life with several chronic illnesses, a family and a big house and lots of people and pets to care for? No.

But it is changing me.

And I just have to say, “Thank you, Lord! I had not planned on ever really coming back but you dragged me here anyway.” In addition to my 12 step group I am finding G-d in my heart, and love in bones in a new faith journey.

Each day unfolds in its own messy way. Hour by hour we chose how we will experience our lives; all of us.

For a Christian, the great leap of faith is to believe that Jesus Christ died on the cross for your personal salvation. That is a wonderful and amazing thing.

For me, the great leap of faith is that G-d is working in my life in new and different ways. I have been trying to listen, sometime with the sound turned down, for a long,long time.
I am being pulled farther and farther into the music, liturgy, language and wide ranging literature that makes up modern Judaism. It is like a smorgasbord. The faith and culture of my heart and of most of my family has brought me here.

I am finally home.

Am I all the way in and exactly where I want to be? No, of course not.
I like to jump into the deep end and see if I can swim and I can’t do that right now. I have to wait until I have the time and energy to concentrate on all I want to learn and experience.
My paramount responsibility right now is to my family. I am needed.
In the meantime, I read, I pray and I grow as much as I can.

I try to remember that my body and soul need constant care if I am to be up for the tasks ahead of me; today, tomorrow, the next day.

So, can I post another uplifting post on this blog next time? I don’t know!
I don’t make those sort of promises anymore. I just try to live the best life I can.
All I have to say today is here…
Shalom, Katie

It seems I have some answers. I should be happy about this. But, right now I am just frightened and I don’t feel too well. I am over the initial panic, but I have yet to begin any sort of therapy.

Thank you, G-D for my new internist. She is a gift. She put this all together and ordered more tests and made a differential diagnosis (what good doctors do).

I have autoimmune hepatitis. I think I have had it a long time and that makes me sad and angry. Autoimmune hepatitis means that my body is attacking my liver as though it were a foreign body and trying to kill it. This can lead to all kinds of nasty things, including liver failure.

Hopefully, with prednisone and some other immuno-modulating drugs, it can be put to sleep. From what I have read, I will probably be off and on the meds. They have side-effects, of course, but I can’t think about those.

Why didn’t any of the other doctors look for this?
Why did I have to get this sick?
Why didn’t my rheumatologist listen when I told her about my symptoms?
Why didn’t they test this when I spent seven nights in the hospital a month ago?

If all of this is so haphazard, we truly have no control. In other words, medicine is not very advanced. I have been reading and pushing and going to doctors and trying to find answers for this for at least three years. I have been told everything from “You feel too much pain” to “You need a psychiatrist to work on your childhood issues.”

This is all bullshit.

In the meantime I have struggled to live my life and deal with a body that was rebelling. I have known that something was very wrong and no one believed me.

This makes me so angry that I just feel like I can’t deal with all of it for another minute. I want to get fixed now. I am tired of waiting.

I feel bad. My body is swollen and I am nauseated and in pain. I am so tired that I feel like I could just sleep for the rest of my life.

If I do that, I might as well be dead.
Sometimes I feel like life is rushing past me and I am not a part of it. I don’t like that feeling.
I want to take part in my life and not always be sick.

I know, I know, I need to keep my head up. I have to be strong. I can’t show the family how low or crappy I am.
So, what do I do?
I guess I go on… one swollen foot at a time, right?
I have to keep ignoring the other stuff, just like I have so far.

When do I ask the doctor if we have a treatment plan?
I don’t know.
I really don’t.
I guess it shall all be revealed and I need to remember I have no control over all of this.
I do believe there is a power greater than myself and I call that power G-d. I believe that I am a part of a greater creation and that I am loved. I do NOT believe that suffering is something we are meant to have as a ‘lesson.’ That does not make sense to me.
We are imperfect and incomplete and small. G-d is the author of all and is our partner in this life.
We have the choice to trust that at the end of it all, our Partner is looking out for us in some way we don’t even comprehend.

The more theology and what not I have studied the more certain I have become that I know very little.

So, that is where I am today: little, scared and not knowing much of anything.
I guess I will choose to do the only thing I can and live through the next minute with my head up.

For the last several months I have been having episodes of Rip van Winkelism. I have been attributing it to just the wear and tear of living with the mess that is my body and going through the daily routine that is my crazy life.
I am beginning to think there is more to it than that.
Like, maybe it is all connected somehow..
Like circular… you know?
Dude….
Here is the cycle…
Katie goes about her daily life of: cooking, cleaning, managing, corralling, calling doctors, writing, trying to exercise, eat well, teach Samuel, be a good listener and if needed, adviser to various family members, being an attentive spouse and listening to her body’s ever-present whining.

Oh, yes, and driving everywhere, everywhere….

And this is not too bad.. really.

But then there are the nights. The nights really aren’t too good. At night there is the pain in the upper right quadrant of my gut. It is louder at night so I have to listen to it. And then, there is the itching. I itch all over. That is a liver thing as I understand it. It correlates to having stupidly high liver enzymes, which occur off and on and no one understands. Instead they just experiment on me and I am getting really, really tired of it.

Oh, and I am nauseous off and on.

So, after about a week of this, I pass out. I don’t just pass out: I can’t move. I am comatose for upwards of 20 hours at a time. I don’t drink, eat or pee.

It is like not existing.

When I finally awaken I feel like I have to make up for lost time. I also feel like I don’t even want to wake up.
I would rather just continue in my state of non-being.

The thought of getting up and facing whatever it is that is making me sick overwhelms me.

But, there are other thoughts; good ones.

I get up for those.

I want to kiss my family and pet my pets.

I want to see the sunshine and feel it warm my face.. all of that corny shit.

So, I do it again..

I set myself to rewind.

But I am beginning to wonder where it all leads. I am hoping against hope that a solution can be found so that I don’t have to lose a day. It would be much more efficient to just sleep at night, when everyone else is doing it!

So, I talked to the new Wunderartzt (Wonder Doctor), my internist, yesterday. She is really amazing. she is going to run interference with the liver specialist and speak to the immunologist and talk to the rheumatologist about the fatigue issue. She thinks all of my symptoms are related to being over medicated. I don’t think that is the answer to Everything but at least she is willing to tackle all the issues and work with me.

In the meantime I am going off of as many meds as I can.

I have no problem getting off of them. I hate taking handfuls of medications.

She sent me to the lab for a big blood draw for all kinds of tests yesterday.

The poor phlebotomist couldn’t get me to bleed but was persistent and finally managed so I left.

We shall see.

Wow. That last post I made was prescient. The very next day I was flat on my back in the hospital. Talk about powerless!

The title of this blog and the sentence above this one were as far as I got for several weeks. Life intervened.

I have so much on my heart that I have writer’s block.

I did have a shaky and frightening ride through the medical system at the first of June. I spent a week in the hospital with elevated liver enzymes, in pain, and nauseated, while the doctors diddled around not knowing what to do. I finally had a biopsy and some imaging tests done but it was much ado about nothing.

I was released on a Saturday with an infection in my bladder that was two weeks on with no improvement. The doctor who released me told me the infection was resistant to what they had been giving me in the hospital and to get to my urologist soon.

By that Monday I was really sick and the infection had spread. I saw my urologist and she suggested I try a fairly rough antibiotic while she re-cultured the infection and we gave me 24 hours to either improve or go back into another hospital.

This was frustrating and depressing. I ended up in ER and due to all the messing around and past history of IV drugs once a month, I have no veins left: NONE.

The nurse in ER could not get an IV into me even with an ultrasound machine and after forty minutes of looking.
She managed to get a tiny vein to hold for about an hour and that was the only I got any medication at all. I could not get a bag of badly needed fluids or a second round of medicine in the vein before it collapsed.

This whole thing with my veins is becoming a huge elephant in the living room.

None of my doctors wants to sign off on letting me have a port a cath placed (which is an IV line that is accessible through your chest and just stays open).

The reasoning is two fold: 1. I am not receiving any sort of infusions at this point that require venous access on a regular basis. I take my immune system meds subcutaneously through my tummy each week. 2. A port a cath can become infected and that is very dangerous.

I understand both points. However, when I do need someone to access my veins, it is a nightmare. All of the nurses that work with me ask, “why don’t you have a port?”
I get stuck over and over and over and everyone gets frustrated. It becomes very painful and stressful for me.
It hurts like hell to get ten pokes for one little IV that then blows up.

The question is: which doctor is going to order the thing?

I don’t know.

I need to have out patient surgery on my eyelid and I am scared to even go because of the IV problem.

It’s ridiculous.

But, in further news, both my gastro doc and my rheumy have fired me. So, I guess moving on is a good idea.
It is depressing but I know this happens with people who are complex and ill.

On a more positive note, I have prioritized taking care of myself as a much higher item than I was. I have decided it is a non-negotiable item.
To that end I am joining couple of groups that I think will help me out.
I am also going to stress out less about my kids. They will manage.
So, June has been tough but I managed to come out ok.
And what about today? Today is the 22 of June, 2015.
It is the 50th anniversary of my birth.
That is crazy!

I think I’ll just put all the bad stuff on the shelf and LET THE GOOD TIMES ROLL!!!!