Scenes from the Immune System Wars

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.

 

 

 

 

 

 

 

I think I am a turtle.

When I was a little turtle, I had a soft shell and I was determined as hell to make a run for it, down the beach and into the water.

There were many other little turtles with me and we were all different.  Each of us ran towards our lives with varying levels of success.

But my awkward little legs went as fast as they could; and I made it!

As soon as I hit the water and swam in the big blue ocean, all on my own, I started to grow.

As I grew, my shell grew with me.

A shell is a good thing.

It is a place where I can retreat.

I can even sleep in there.

Or, sometimes, it just feels reassuring knowing I always have my own “back.”

Predators cannot penetrate my shell.  They can try, but now that I am big, they can’t get under there.

Besides, I know how to hide; how to blend in to my environment: sometimes I look just like a rock.

Other times I float along in the current and look lifeless.

But, I am not lifeless.

And to be honest, floating has never been easy for me.  I always feel like I should be going somewhere.

In fact, I am going somewhere.

I am now an adult turtle and I am making my yearly journey home.

I have to go there each year to stay in touch with the place I came from and to lay my slippery eggs.

Then, new lives  can begin.

When they make it to the ocean, I will swim alongside them and tell them of all the things I have learned:

I will teach them to float and to hide and to find abundance in our beautiful blue home.

And I will show them my big, grown up shell.

And, if I am very, very honest, I will tell them something more:

Sometimes things do get under that shell that I wish wouldn’t.

I get barnacles and free loaders on my back.

They see a firm foundation and latch on for the ride.

Some of them are even parasitic and try to make me sick.

But, no.

I won’t let them stay.

I will evict them one by one and then lay up on a log… all in a row with my friends….

Soaking up the sun.

 

 

 

 

“Great title, Katie” I told myself.

Two weeks on and I cannot seem to finish this post.  I will give it a go again this Mother’s Day morning.

I have had a few weeks that were relatively good, since my power port was put in. But, then I overdid it and tried to eat a few normal things so now I am having a flare of pancreatitis that caused me to be very sick. So, it is no surprise that  I spent  six miserable hours in the Seton Main ER last Monday which ended up in me being sent home, still in pain–and the doctor telling me he couldn’t treat me because he saw no evidence I have chronic pancreatitis.

I tried like crazy to explain to him why it is not visible on a CT scan and why it doesn’t show up in the blood work.  I even asked him to please read my chart and call my gastroenterologist.  But, he was having none of it.  He sent me home with a bunch of prescriptions for things I either have or I am allergic to.  And he suggested I go to a clinic the next day since he did not note I have a primary care doctor or pain management.  I have both and I had told him that!

He told me it was illegal to give me more pain meds without proof of a disease.

That was patent bullshit and I know it.  He had decided I was drug seeking and that was the end of it.

I am not doing emergency rooms anymore unless I have a hand written note from a doctor or a doctor calls ahead for me.  I have even taken the step of copying out all of the paperwork I have on hand from my pancreatitis diagnosis and writing an intro letter that includes the names of all of my doctors and my diagnoses.  Maybe that will help.  I don’t know.

Last week, I went to see a surgeon about having the egg sized hernia on my upper right side removed. My rheumatologist and my pain specialist had both said it needed to come out.  She reviewed my chart and said, ” I will not operate on you due to the fact that you are complicated and that it will probably come back because you are so fat.”  When I asked her what I was supposed to do about the hernia, she said, “Get it out when it becomes strangulated… i.e… a life threatening emergency.”

Nice.

It turns out she was a bit out of line and that my pain doctor’s referral for my port went to the wrong surgeon, etc. So, he is now referring me to the “right” surgeon so I can get the hernia removed; pre-emergency, hopefully.

But let me get back to that wall. The Berlin wall fell in November of 1989.  And by January 1990, the absolute high of the moment was wearing off a bit but it was still an ongoing process for those who lived in Berlin; the once divided city and great symbol of the Cold War.

When the wall came down in Berlin, in the East, people who had been locked into a gray scale world of suspicion, fear, deprivation, and monotony were able to do more than just  see the glittering towers of  the forbidden west. Finally they could actually touch them.

The Easterners, as the Germans refer to them,  had known there was something brighter on the other side of that wall but they also knew that to try and get to it, they very well might die in the attempt… (of course, many did).

Some people had endured the Communist regime’ by embracing the system.  They became the eyes and ears of the infamous, “Stasi” or secret police.

A friend of mine who grew up in East Germany told me that because her family would not renounce their Christianity, they were not members of the communist party. So, after Germany reunited, she and her mother went to look at their Stasi files.  The people who had been watching and reporting on them the whole time were their neighbors, whom they considered friends.

These people, the ones who have lived both under the heavy hand of twentieth century communism and then become a part of the glittering and yet confusing world of “democracy” are wounded:  I know many of them.

They have a real difficulty believing that anything that comes from an authority figure is not designed to make them fail.

They also have a sort of paranoia about being too trusting or too open or too optimistic.

They are suspicious in a way those of us who grew up in the west, just don’t really understand.

That is not to say they are not, in my experience, elated and curious and forever grateful that the system broke down; but they are just wary of having the same sort of calamity, brought on by misguided (at best) or despotic, neurotic, power hungry governments.

(Just as an aside here.  I have read Karl Marx.  I know the original ideas espoused by communism were good ones.  They just didn’t go well at all when put into practice by men.)

“So, Katie” you are thinking, “what is the point here?”

I am getting there; I promise!

One more thing, which is kind of funny and very ironic, is that in Eastern Germany there were no bananas.  So, when the wall fell down, the Easterners ran rampant through West Germany buying all the bananas they could get their hands on.

When I was living in Germany in 1990/91. I remember hearing people (we were in the Southern corner of the country on the Swiss border) moaning and groaning about Easterners taking their damned bananas.

In 1993, when I did an internship in Berlin for the summer, I could still hear the grumbling but it had gotten worse, “I wish they would put that wall back up and just feed them bananas.”

Yikes.

So, how am I like the wall and like the Easterners?  I have recently had a glimpse of the bright and glittering city I used to inhabit. You see, I came from the West originally. But, for several years now, I have been living under a different regime’, where all is grey and hopeless and desperate, and everyone is sad and angry or just plain mean.

But lately, I have made it to the top of the wall.

I saw there were a lot of people like me up there.

We are all just dismantling the thing piece by piece.  We tear off a chunk and pitch it to the ground, grunting with a combination of all our pent up anger and rage.

It appears as though we might have actually won our freedom.

But, what does that mean?

What is freedom going to look like?

It is going to be different than before; that much is obvious.

It will never be the complete freedom from worry and pain and mortal danger that we earlier took for granted. We have our eyes wide open.

We are jaded now.  Jaded by our bodies having turned on us in surprising ways and by a medical system that chews up and spits out those who cannot be easily “fixed.”

We take nothing for granted and we are very suspicious; paranoid is perhaps a better word.

Every time the pain gets overwhelming and the gray curtain of iron that is our prison, descends, we are afraid we will never be able to get back to the top of the wall and make it back to the other side.

But, lately, I have begun the work to build a little home for myself in the West.  I am rebuilding my own walls so that I have a view.

I have just begun so the work is ongoing and will be for a long, long time.  But the idea is that I have hewn out a chink in the Berlin Wall that is Katie sized.  It is just big enough for me to get through each time I have to go back to the East.   On each trip, I will learn to take more and more supplies that I might need when I am behind the curtain, on the east side of the Wall.

These supplies, which are psychological and therapeutic in nature, will give me what I need to survive each trip back and forth.

And hopefully, if I am lucky, I can get some bananas to take back to the others:)

 

 

 

 

I just did a very bad thing.  I read through a post that I never published.

I remember now why I never published it.

Now I am crying.

Well, enough of that shit.  I need to get my chin up and go on.  There is no time for self pity or sadness or any of that.

My latest and greatest medical achievement has been getting a port a cath on Thursday.  A  port a cath is a little button next to your clavicle that has a connection running through it and straight on down to your main artery.  It is a permanent way to get an IV.

I have needed this for a long time.  But, as is usual with me, I have not healed very well.

I am red, swollen and in pain way past when I should be.  I ended up on antibiotics.

I have no real idea if it is getting better because I still have a temp but then, I often do run a temperature.

I feel worn out and worn down and weepy to be honest.

Yesterday I just slept all day and all night and ate vegan donuts.  It was nice.

But, I have to get up and running. There are things to do and I need to be on the go.

Something interesting happened on Saturday: I became my mother!

I had to laugh through the tears.

Because I was feeling so rough and because my family did not want to hear about it, I was talking to myself.  This is something my mother did a lot of!

It used to drive everyone nuts!

Now I have done it.

My husband told me that the kids (and he) thought I was “on” something or that my behavior was bothering them.

After a bit of probing I discovered the problem was that I had been talking to myself.

The question is, why was I doing this?

I figured it out.

I needed my mom.  I get really desperately lonely with my illness sometimes and I miss having my mommy.  She may have talked to herself but she always listened to me.

I think my subconscious was channeling her by talking.

Weird? Yes. It is very, very weird! But I was trying to give myself what I needed.

I don’t get it at home.

That isn’t anyone’s fault.  It is what it is.

So today I started to get in the shower and get dressed and such and I realized I was doing it again.  I even started to narrate what it was I was doing and remark on how I felt.

Oh no!  I realized I was doing it again.  If I am not careful I will do it all the time and my family will really have enough of me.

So, I am practicing being quiet.

My thoughts, my comments, my feelings, all need to stay quietly locked up in my head.

I figure it is safe enough if I let  my inner mommy talk to me in there. I know she still cares.

And I know she is never too, too far away.

So, mom, I need your input.

Daddy, you too.

My life is kind of scary and uncertain and I feel lonely and sad.  You two were my protectors: my great wall of China.

I still need to talk to you.

But, let’s keep it on the down low, okay?

I know you can hear me anyway.

 

 

 

 

INSOMNIA

April 5, 2016

So, here I am.  It is stupidly late and I have maybe had two or three hours to sleep.

I would like to write this missive into my blog but I can’t because the internet keeps crashing. 

This is truly a modern dilemma.  How in the hell can I get through a night like this without internet access?

It is inhumane!

I have attacked the problem with every bit of my computing power.  The computer was underwhelmed.

The only satisfaction I have is writing this and hoping against hope that I find it again so I can stick into the right file.

Why do the chronically ill have insomnia?

Do we not get out enough? Do we not think enough?  Do we wallow around in our pain too much?

I really don’t know. 

All I know is that when I do sleep well, it is magical and I never ever want to wake back up.

I have had two sleep studies done.  They wire you up like a bizarre zombie and then tell you to go to sleep ‘naturally’ to see if you have a  diagnosable issue that is causing your sleep deficit.

It is really creepy because there is a guy in the next room, watching you on camera. Both times, my diagnosis was the same: insomnia for unknown cause.

There are no machines or lovely devices that will send me off into dreamland in an reliable way.  This is just the way I am built.

It dates back before I was diagnosed with any rotten diseases.  It has been a struggle to sleep for as long as I remember.  My only period of reprieve was when my children were small and I was working 3/4 time at the University.  I was simply too tired to care at that point.

To be totally honest, I used to love cuddling the children and watching them sleep.  Samuel and I co-slept until he was five.  It was too much and not great on my marriage but I loved having his little baby body so close.

My sleep is so erratic and weird that my husband doe not like to spend the night in my bed.  He hangs out a while and then removes himself to the guest room.

So, mostly I am alone.  I have an attack chihuahua mix, Penny.  But even Penny bites when I try to cuddle her at 3 am.

And so, here I sit. 

I have taken all the drugs I dare. 

I have wet towels for my arms and sides because they itch uncontrollably.

So what can I do tomorrow to make this different? 

I think it is time I start walking every day.  I am incredibly weak from five hospital stays since November.  This last one, which involved my lungs and heart (surrounding the heart) area holding onto fluid, scared me pretty badly.

I have to take control of this body of mine as best I can.

I had an up close and personal meeting with my G-d that week and I know  that I have to make changes to survive: 1. I have to deal with my depression and fear head on. To this end I already found and had an intake session with a new therapist.  She practices hypnosis and EMDR, which are both designed  to help with the type of pain I have as well as work through the trauma I have  accumulated in hospitals and ER’s these last few years.   2. I have to work to free myself from a lot of my prescriptions and western drugs to make me feel better.  I feel pretty convicted that at the end of the day, many of them simply exacerbate the problems. 3. Have very few expectations of myself.  If I am home and healing, that is a legitimate use of my time. 4. I only see two doctors a week: no more and usually no less.  If I stick to this, I will remain more sane and be less likely to confuse myself and my doctors! 5. And last but certainly not least: find joy!

This is a fairly tough and comprehensive list but I hope it is realistic.

I learned last week in the hospital that I didn’t want to die.

For the two days I had trouble breathing  I became pretty scared.  I did not know if I was going to be moved to the ICU or if I would just stop breathing.  I realized that even though my life has been really painful and really hard these last years, I still want to be here.

I am not finished yet.

So,Lord willing and the creek don’t rise, I plan to stay.

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.

So, I cannot believe it has only been a little over a week since I learned I was not a candidate for the pain relieving pancreatic surgery.

It has all been a roller coaster ride: emotionally and physically.

It has also been a very rough time for my family.  They did not know they were going to be going on roller coasters any more than I did. It is scary for them too.

I have been learning more about that and trying to make room for their fears and responses and general abilities to cope.

For my son, I have found a great place for him to get some very focused therapy that concentrates on having an ill parent.

For myself I have a new and very interesting ‘healer’ and counselor to try out next week.  She does all kinds of stuff that I am interested in learning about.

For my spouse there is whatever he wants to find.  I cannot find it for him and I am letting that go.

I am chugging along with my ‘to-do’ list from my last blog entry.

I have seen the two most trustworthy doctors I have and gotten some sound advice and I am slowly but surely starting to eat a bit of solid food again.  However, the goal here is massive weight loss so I am very, very careful what and how much I eat.  If I eat too much, my gut freaks out anyway so I have a built in stop mechanism!

I am up and dressed and getting out and having goals every day.

That may not seem like much to a non-sick person but for a chronically ill person coming out of a long bout of illness, it is huge.

Do I hurt? Yes.

Am I cutting back on pain meds? Yes.

But, I am trying to find that sweet spot where I listen to my body and not the negativity and self shaming in my head.  In the sweet spot, I hear things like, “Katie, you just did a really difficult task. Go rest a bit!”

I am clearing out a ton of paperwork and photos,etc. from my parents’ estate that have been stuffed into a bedroom closet in my house for five years.  It is a good thing to do. I am ready.  I wish like hell they were here but I am okay with the fact that they aren’t.

I have amazing memories.

Today, when the therapist that is going to see my son came to the house for the in take session, I told him I have autoimmune disease and primary immune disease.  He heard, “autoimmune disease.”

He proceeded to tell us he did a medical rotation in school and knows all about autoimmune disease and that it is %95 psychological.

I almost told him to leave.

On the outside I showed nothing.  I simply said, “I have diagnosed disorders that are treated by specialists  with pretty serious medications.”

He then proceeded to ask about the amount and type of pain medication I am taking.

I tried to explain and he became preachy again.

As he got ready to leave he asked if there were any constant treatments I am on.

I said, “Yes. As I was saying, I am on weekly infusions of immunoglobulins.”

He did not know what it was so I tried to enlighten him.

Clearly he was out of his knowledge range.

That is fine!  I don’t expect ANYONE to have heard of a disease that effects so few people.

But I also wish people would be more sensitive to NOT knowing it all.

He is very intelligent, very well educated and well meaning and ultimately I decided what he thinks about me probably doesn’t matter. As long as he doesn’t tell my son I have made up my diseases we are fine.

But, it just brings me back to the reality of life as a Zebra.

No one really “gets it.”

And, there is no reason for me to expect they will.  I just want a modicum of respect.

I could begin to surmise that it is a feminist issue.

I could go all academic on it and write about that.

But I won’t.

So, here I am.

I am one week out from having been told no.

I have learned that I can recover and move on just like I have before.  I have learned that no matter what I do I just have to do it one day and maybe one hour or one minute at a time.

I have learned that if I start the day with all the right ingredients: prayer, meditation, exercise, perfect nutrition, etc.

I run like an almost well person.

But, the days will come  when I don’t run so well and my oil needs changing.

I guess I need to store all the good things for those days.

Until then, I am going to not worry about the naysayers and the arrogantly ignorant.

They have nothing to do with me and I have nothing to prove.

I am self contained and self aware and competent.

I do not need approval.

I have all that I need from a higher power…

I am moving right along, at the pace of a snail.  This week I had a meeting with the transplant doctor in Dallas.  It was a rough day all ’round.  I was in pain and nauseated as all get out.

My poor husband had to do all the driving.

And, what I thought was a yes/no /go meeting on the surgery was really just a first consult with the chief of the transplant program.  Basically, he had not seen any of my paperwork and was just meeting with me based on the fact that I had been recommended by Dr. Burdick.

I have an idea or two who dropped the ball on the information getting part of the equation, but it didn’t really matter.  We were there so he checked me over and asked me to go through my own history.

I did not come off too well. I had been crying from pain most of the way up there and was sleepy from nausea meds so I was a mess.  Dr. Kim, the transplant surgeon, said he is not comfortable with proceeding with my surgery until he speaks  with all of my specialists and has a better picture of how my body will potentially  handle this surgery.  He actually said, ” I don’t want to kill you.”

That sort of gave me pause.

It also scared the hell out of me.

Without the surgery, I will have to continue living the way I am now, and that is simply not acceptable.

Right now I am bloated like a dead fish.  My belly looks like I am going to give birth to an eighteen pound child at any time and my feet and ankles are more like an elephants’ that mine.  My hands are too swollen for any of my rings and my tummy is tight and hurts like hell.

I can only eat liquid nutrition and maybe the occasional egg and toast.   Popsickles are my favorite food as of late.

This just is not living.

I have to take so much pain and nausea medicine that I am a dope and sleepy most of the time and my short term memory is shot.

I don’t like having no control over what happens to my body.  You would think I would be used to it by now, but this seems like a newer and bigger challenge than some of the others I have faced.

Trust me, I am so grateful to have a diagnosis.  I just really wish it were sooner and I could have saved more of my pancreas…

But, that is a long gone wish.

So, I have to stop, reset, reload and move forward.  I cannot let all of this take me down.  I have a family that needs me.

Yesterday, my son crawled in bed with me and said he needed me to hold him because he was afraid I might die.

That was too much.  He doesn’t need to be thinking about all of that.

I am working on getting him the therapy he needs and on being specific with what he does and doesn’t need to know.

I cannot let the depression or the fear or the pain or the nausea over come me.

I have read of people being hospitalized for up to one month before this surgery .  I have also heard of people who go on a gastric feeding tube only because they cannot digest food at all.

I don’t want to be any of these people.  I am scared of it.

I know I can survive just about anything but that all sounds pretty overwhelming.

I can do this.  I know I can.  This will not kill me.  It will make me stronger.  Apparently that is the agenda G-d has going with me anyway, “You, Katie, get stronger… ugh.”

( I realize I just made G-d sound like a Neanderthal).

I have always identified with the story of Jonah when it comes to my relationship to the Divine.  I have to be puked up by a giant fish for G-d to get my attention.

But, why?

Why am I being puked up by the giant whale again?

That really doesn’t square with my modern take on theology or divinity or of any of it.  I mean, G-d is an insensitive jerk if She uses this kind of stuff to put people on notice that they somehow need to reach deeper and farther into themselves than they ever knew was possible.

What up with that, G-d?

Go pick on someone else!

Well, maybe G-d is not in this picture at all, or maybe She is on my side and has helped me find all of the help I have been given: i.e. good insurance, a lovely family, access to good medical care, a mind that is able to keep up with what is being said and is able to read and ask critical questions.

That may be as good as it gets.

Right now, I am paralyzed with fright.  I am completely over wrought at the thought that I may NOT be approved for this procedure.  Without it, I don’t know what will happen to me.

Well, I guess I do know: It will kill me, eventually.

All of it, in the end, will kill all of us.

I remember a silly line of my dad’s.  Whenever Daddy heard someone had died he would say, “was it serious?”

Yeah well, serious enough.

So, how to go forward?  I haven’t the slightest fucking clue.

1/19/16

This is a very appropriate day to pick this up again and finish my post.  I heard back from the transplant doctor this morning.

I am not a good candidate for the surgery.

That’s right.

No surgery.

He said that with my liver issues he and the liver specialist feel that the islet cell transfer might send me into liver failure and kill me.  He does not want to do that.

He pointed out that I am too young for that kind of last ditch effort and that he thinks I can do other things to manage it.  Well, I have to do other things to manage it.

But the weirdest thing happened after I hung up the phone and cried a bit:

I felt like my prayers were being answered.

I have had a morbid fear of this surgery.  That fear has been getting larger and larger since last week.  I really have had a bad feeling about it.

I was going to go through with it if it was recommended but I kept having this feeling that I would not be coming back home.

What next?

Tomorrow I am having another (attempt) to block some of the pain by injecting steroid into the back where the pain is located, sort of.  The doctor who did it the second time is doing this one and feels like he has a better idea of where to go and how much to use to bring me some relief. So, although I loathe steroids, I will give this a go.

I have a call in to Dr. Burdick, in Dallas, because he can do a much more targeted pain block by going through my mouth and placing it right over the trouble area.  I am going to pursue that too.

There is still the option of the spinal cord stimulation device and the possibility that it could help.

And, then, most important of all; there is me and how I choose to handle this.

I am not defeated.

I can lose weight;  (I have been but not in a healthy way) and I can learn what foods cause inflammatory responses for me.

I can exercise.

I can meditate and pray and be a lot more in touch with the center of my being than I have been.

I can also do acupuncture and acupressure and all sorts of things that are not traditional medicine.

I am ready! Bring on the woo woo weird stuff!

No, actually, I have a good, dear friend who has one foot in the alternative healing community and I have already asked her to be my guide.  She is going to make sure I get hooked up to the right people.

I am going to get better.

I may still have pancreatitis.  I probably, as the doctor suggested this morning, have bouts of autoimmune hepatitis.

These are bad, and damaging diseases.  The only way to fight back, it seems to me, is to not fight so hard but to become a ninja.

By that I mean, I can learn to slide in, out and around the workings of my own body.  I have to baby it.  I have to treat it well and I have to make it behave!

So…

That’s it.

Today, I will look forward and not back.

I will remember that this body of mine, though flawed, has made it for 50 years.  I can definitely push more out of that.

I am going to get strong and at the same time try to stay soft.

I want to listen to what Katie’s body has to say without freaking out and without googling anything!!!!!

So, Carpe Diem!

Or Carpe’ Pancreatum…

 

 

 

So, here I sits in the hospital again: day 3. It is Christmas eve and I want out of here.
I came in to ER Monday evening because I was experiencing a big increase in pain, and other nasty symptoms. I really had no idea that they would keep me.
For the entirety of this lovely visit I have only seen hospitalists, no gastro Drs..
This is not cool.
On my own, however, I have made an appointment with Dr. Pham, the local pancreatic specialist, for early next week. I pushed my way in by saying I was currently in the hospital again and needed to be seen: ASAP.
I have also continued my pursuit of the big guy, the head cheese, the mob boss–Dr.Burdick, in Dallas.
He called me yesterday and told me he is transferring my case to Dr. Kim, who is the head of the pancreatic transplant team. First, a side note: they don’t actually transplant a new pancreas into your body. A Pancreas is sort of a one shot wonder. What they do transplant is the Islet cells, the little guys that make insulin, into the liver. This is really good because it means that although someone ( me! ) will become diabetic after the pancreas is gone, the remaining Islet cells, swimming around in the liver, will give the body protection against the worst case scenario, which is, brittle, or uncontrollable, type 1 diabetes.
So, that is the transplant part.
As it turns out, the panky ( affectionate term for Pancreas) does more than just process insulin. It also controls the release of digestive enzymes. Without these enzymes on board, it is impossible to break food into the different nutrients we all need.

In order for that to work, the post pancreatic/ islet cell producing patient simply needs to take supplements with each meal, for the rest of their life.

I am down with that.

Apparently the cost of doing nothing about this could mean inviting pancreatic cancer in. I dont want that.

So, in a way, this is like getting a total mastectomy before you even get a cancer diagnosis.. Because you have the braca gene and there is probably no escape.

It helps me to think of it that way. Because right now I am having a hard time wrapping my head around this.

ONE WEEK LATER:

I never did finish that post.  I came home and made it through the holidays in a fog of pain pills and fatigue.  I have now wrapped my mind firmly around the idea of a pancreatic removal (probably spleen and stomach parts.. depends on my anatomy) and islet cell implantation.  In fact, I want it done.. yesterday.

I am in a situation that is rapidly veering out of control.  I cannot eat solid food and I get sick from liquid nutrition drinks at this point.

I have upped the pain pills to the maximum.

I am so bloated it looks like I am eleven months over due with my eighteenth child.

Something has got to give.

I saw the panky dr. here in Austin on Wednesday.  He confirmed that I need the transplant surgery and that I should have known sooner ( don’t know what to do about this) that I had a congenital defect.  Basically, the other drs never injected enough dye or looked far enough to see what was under their noses all along.

I also saw my rheumatologist and he was very compassionate and told me to go with my instincts  and seek the care I need when I need it.  (Maybe I should listen to that.)

I am thinking I cannot survive a month or more of waiting for this surgery to happen.  But, good things happen on Facebook.

I have learned in the course of the last few years that there are sub groups for every ailment, no matter how weird.  I have hooked myself up with some folks who have had the same procedure at the same hospital and they are walking me though when to call for help and who to call.

I actually called Dr, Burdick, yesterday and he said I could go in to ER here or in Dallas.

Stan (hubby) was somewhat reluctant, and rightly so, to drive me to Dallas and just have me admitted with no plan.  So, I am still here, all night.

I am going to make some more calls in the morning.

I feel like I have reached the end of the end of everything.  I don’t have anymore to give.  I just want to be put to sleep.

Perhaps this is good.  I am no longer scared of the surgery.  It is horrible and nasty and very scary but I have no other way out and it might just probably give me most of my life back.

I am trying to remember to pray and to breathe and to reach out and ask for help.

But, it’s hard,

Sometimes when I reach out, there is no one there.  And sometimes when I pray, I hear nothing but the echo of my own plaintive whining.

I am worried sick over my kids and family and what they will do if I am gone too long.  My son needs help and my husband can only do so much.

My aunt is not well and there is no real help for her.

I just cannot hold all the strings together.

I feel like my life is a ball of yarn and I have dropped it and it keeps rolling and unraveling away from me.  I am scared that I don’t know  how to get it back.

I realize this is raw.

Sorry.

It is 4:55 a.m. after another night of pain and nausea and watching bizarre videos.

I am fresh out of love.

I need help.

I need prayers.

I need action.

God bless the lonely and the pain ridden.  God bless the doctors who deal with us.

God bless the families of the ill.

God bless the soft puppy dog that sleeps next to me all night.

I want to trade bodies with him right now.

Right now.

Licking my butt and eating dog crunchies every meal looks really, really good to me right now.

 

 

 

 

 

 

 

 

What a strange holiday time it has been this year. Not that I think there is any such thing as a “normal” holiday, but truly, this one is a weirdo.
As a background, the weather in central Texas this year is unseasonably warm, even for us. It seems odd to not even need a sweater in December. But, I realize this is an El Nino year and besides that, we have global warming to thank for increasingly strange weather patterns.

As to the exterior, or wrappings and trappings of the season, things have been strained, at best. There is no veneer of sanity here.

I have been in and out of the hospital with my damned pancreas and when out of the hospital, still in pain and nauseated. I cannot eat normal food and have not had very many nights of decent sleep in the last month or so.
All of this drags me down and unfortunately it takes my loved ones down too.

No matter how hard I try to keep things cheerful, they know. They see me hurt and know I don’t sleep. It is obvious to everyone I am popping more pain and nausea pills and that I cannot eat what I cook.

The weirdest side effect I have had of late has been a crazy amount of sweating. It may be menopause but I don’t think that would just kick on one day and go non-stop.

Something is seriously amiss.

This means another doctor and another set of tests and another set of questions. Should I google it?
Should I read up on what my latest blood work may be pointing to?

Arrgh.

Probably not.

I can and I do, but I really don’t want to know.

So, I will make those appointments with all the right folks and go from there.

Oh, and when and how am I going to go about getting a port a cath? (Indwelling and permanent IV line). I really need one. But, that is another doctor and another set of tests and another outpatient operation.

And so, on it goes.

The kids are anxious and my husband is tired. And although I know I am not at fault for making their lives more difficult, it still weighs heavy on my heart that my health is such a difficult thing for all of us.

Jingle…

I don’t feel much like jingling.

So, I have been manufacturing some jingle…

We have made a ton of cookies and a ton of latkes and have had a ton of poorly wrapped packages that I purchased online. We celebrate Chranukkah (Christmas and Hanukkah) at our house so we try to embrace it all.

I have made it a point to buy something silly for everyone on my list. I got the girls, (in their 20’s) footie pajamas with hoods that have ears and my 16 year old son got a Jeddai snuggie.

Our cookies have eyeballs on them and look a little satanic and strange.

This sort of thing makes us happy around here.

And, it is important.

It keeps us all grounded.

When my aunt suddenly has to go into the ER and spend the night in the hospital, I have to do what I can to keep us from all going nuts.

When our family of origin become the last people on earth who would lift a finger to help and it hurts, it pays to remember the good.

There is a lot of good.

My kids are healthy!

My husband is employed and healthy!

We have a nice house and nice animals and we can pay most of the bills!

None of this is stuff we should ever take for granted.

I used to think that when you reached a set point of ‘bad stuff’ you had hit your quota and there wouldn’t be anymore.
Yeah, well…. that was a long time ago.
I know better now. And I also know that we are damned lucky.
But that still doesn’t make me too excited about jingling all the way…
After all, I think jingling is highly over rated.
I am more of a light it up and burn the house down with brightness kind of girl.
But, since Hanukkah has come and gone for another year and Christmas is a few days away, I will give it my best shot and try jingle, jiggle (I’m good at that!) and twinkle all the way.

Ho! Ho! Ho!