“From the Neck Up”

” I think it is possible that most of your issues are from the neck up.”

This is what the gastroenterologist told me the other day after surgery. Generally, he has been a nice and well balanced guy.  However, he has been unable to fix my problem.  I must say, he has been more resourceful than most but  is obviously frustrated, so thus his clinical conclusion, “you are crazy.”

I don’t appreciate this.  I also know better. I was told I was crazy for twenty years before I was diagnosed with CVID.  After having three sinus surgeries in a period of five years and being told a. I was a princess.  and b. (by another doctor) that I had an incurable infection. and c. I needed an immunologist but there wasn’t one in Austin.  I was finally diagnosed with low to non-existent immunoglobulins and got better with treatment.  The jury is still out on whether to call it CVID or SCID.  I don’t know or care.  The stuff works. I no longer have sinus infections or pneumonia.

I do, however, have the disease progression of a person with a primary immune disease.  That is, all the other parts of me are falling apart.  In 2011, I was diagnosed with a connective tissue disorder and since then I have been coming apart at the seams with a whole menu of things.  This is not unusual when taken in the context of people with primary immune disease or CVID.  But, very few doctors know how to treat a patient with this underlying condition or how it even works.  Even the best doctors don’t know much because it never, ever, follows a straight course.  It is different in every individual.  Instead, it is mostly shrugged off as ‘one of those things crazy people get,’ or ‘not as bad as she says’.

I have had upper right quadrant gastric pain on and off but mostly on for three years.  It began when I had an allergic reaction to the drug Cymbalta.  Cymbalta tried to eat my liver and put me in the hospital with sky high liver enzymes.  Since then, I have been told I have a fatty liver and fatty pancreas and yada, yada, yada. The assumption is: why wouldn’t those parts of me be fatty?  I am, after all, fat.

Here is the catch… I never had those issues before the Cymbalta incident.  Something happened to me then.  I know that.

However, that is a bygone.

Just like my gallbladder;  That is also a bygone.  I had it out when I was 35.

Since this past January, I have had five ERCP procedures.  These are attempts to open up my biliary duct and pancreas and let them drain better.  There are huge risks associated with these procedures.  However, I have been  desperate enough to try it anyway.  Several of them have worked well.  During the ERCP, the surgeon places a stent either in the biliary duct or pancreas and the stent lets the bile flow freely.  Apparently, each time, I have had a back up of ‘gunk.’  Also, my biliary tree is ‘tortuous’ or not well formed, so it is difficult for it to work.  This is all per my understanding.

Yet, despite all of this, when the stents come out, as they must, I have the problem again and again. I have tried diet and exercise and YES! I see a therapist and a psychiatrist and I do all I can to keep my head on straight. Both of the mental health professionals I see have confirmed I am no crazier than I should be.

My doctor’s last little ray of hope is that I have a gallstone that is tucked away in a duct no one can get an  image of and that is causing all of this.  Who knows?

All I know is I had the surgery again on Thursday.  The doctor saw me on Friday in the hospital and repeated his latest idea for the fifth or sixth time that, “it is from the head up,” and then released me.

I feel belittled and sick and in pain. The pain is worse today and I should probably go get an x-ray to make sure the effing stent has not migrated, which is a real danger.  However, I think I would rather not go.

I don’t want to spend the money.  I don’t want to get poked nine times to get an IV in and I don’t want to be told I am crazy.

Oh, and God forbid I have an anxiety attack as I did last Thursday in ER.  The doctor used that as part of his ammunition to prove his point about the crazies.

I am tired.  I am tired of being in pain and being alone in pain and being told I am crazy.

If this sounds like one, long, whine. I apologize.  Please skip it.  Don’t read it.  Unread it if you need to.  NO comments necessary.



3 Replies to ““From the Neck Up””

  1. Hi, Katie. I know it doesn’t make much difference, but I know you are not crazy. Thank you for your post. I feel the same way today, I am tired and in pain, and I am tired of being in pain. I know things are wrong and I don’t even care enough to go through the process of getting them checked out. It will be slow and painful and there will be head-shaking galore. If the doctor can’t figure it out then they will assume I am lying or crazy…or just seeking pain medicine. Which I detest, by the way. I hate the stuff, but I function better with it. I am sorry for the terribly long comment, but I just want you to know that I understand your frustration. I just want to get better. I want the other me back, the one that worked circles around everyone else, instead of this lump on the sofa.

  2. A doctor who does not specialize in “from the neck up” is diagnosing your “from the neck up” problems. Not his specialty.

    Well…your writing is getting very good.

    And I’m sure you don’t need any advice so I won’t give you any. But I will keep reading this and listening to you and seeing who you really are.

Comments are closed.