Fun Updates From The Front

How are all of you out there in blog land? Blog-o-sphere?

It is the end of another school year and those of us involved with students and the cycle of semesters are running towards the finish line, or limping, if you are like me.

I stopped teaching as an adjunct (where I was for almost 15 years) about three years ago due to my crappy health and have really missed it. But, with having a kid in college and another still in school it seems like I have been pretty plugged in.

Well, this past October changed everything in that regard. I started home schooling my ninth grader. It has been an incredible learning experience. I now know way more about high school curriculum than I have in many years. I have learned lots of science, because that is his main interest and we participate in an incredible home school science group, where he competes both in Science Olympiad and Science Bowl. This means he is practicing and competing through out the school year.

It has also been exhausting.

The last couple of weeks I have been back at my old tricks, grading college composition papers, for a professor who had her baby a bit earlier than planned. My old department called and asked if I could pick up some of the work. I was happy to do it. It felt good to be back in the swing of it, mentally. And, I am always happy for any little paycheck since disability is not much money, at all.

With all of that happening, my aunt needing me every time I turn around and my daughter calling, it seems like enough.

But, no. Life doesn’t work that way, does it?

It turns out my gastric pain is back in full force. I can’t eat without being in significant pain. I haven’t had my liver enzymes checked since they went wild a few weeks ago because I frankly just gave up.
But, Friday I saw a Hepatologist from the medical school in Dallas. He comes to the Austin area once a month and I was able to see him. He had some new ideas! He does not think I have cancer or hepatitis or anything like that. He thinks I have a biliary stone, which has been looked for already, that is flipped inside one of my oddly shaped ducts and invisible to the MRI and even to the limited surgeries I have had with scopes. In other words, he thinks I probably need major, exploratory surgery to get it out.

This is good and bad.

He believes it explains the off and on again nature of my problem and why it has not been solved. So, he is researching all of my files and talking with my gastroenterologist to see what he can piece together. In the meantime, he told me the horrid pain and high liver enzymes will happen again. I am a sitting duck.

It isn’t a good feeling.

I want to go on vacation in a few weeks and I don’t want to be ruled by this. It’s pissing me off!

It’s crazy. But, I am trying to be optimistic that there is path ahead that may lead to a resolution. I guess I have to follow it and hope for the best.

In the meantime, I will keep pushing my teenage student to the end of his yearly studies, and grading those papers. Oh, and driving my aunt all over the place!

Carpe Diem: and Liver Duct e’ Puke’em.

How To Tell If Your Doctor Wants to Get Rid of You.

I think I have experienced a new low in the treatment of my chronic illness.

The only thing I can figure out is that my rheumatologist is trying to get rid of me. I am too much trouble, it seems.
Well, that feels bad.

But, to be honest, this is not the first time this has happened.

Let me explain:

Over the last three months or so, I have been having ‘flare’ symptoms, meaning, my body has been swelling on the inside. This has caused me to have bladder spasms and tight chest muscles and a variety of other things.

I know the flare is ‘real’ because my blood work shows that my ANA, which indicates a triggered autoimmune response, is high.
In addition, I have had swelling and I am, for the first time ever, anemic.

I have been really ill with unexplained high liver enzymes and my fatigue has been off the charts. When I can sleep, I am often out for fifteen hours at a stretch.

This fatigue and increase in pain is difficult to deal with but I cannot seem to get any answers.

This whole time I have been forging ahead, not hospitalized, and trying to just keep going.

Any special treatment or consideration of the blood work and symptoms as a whole, has simply not happened.

I have asked my rheumatologist and her colleagues at the clinic where my gastroenterologist, immunologist and dermatologist, and psychiatrist, all work. I have been going there because the clinic uses the Mayo model: i.e. they collaborate about your case with one another.

It seems this situation has backfired in my case.

After questioning my rheumatologist several times on the new e-mail system for patients, I received the reply that my conditions fit under a theory called TMS and she directed me to the lectures and book of a particular physician who espouses this theory.
The theory is that inflammatory disease processes are a mind body response to unconscious stress. Also, that this is the only answer to the levels of pain and poor health experienced by people with my profile, in her opinion.
It seems, she no longer believes I have verifiable illnesses.
This is odd because on my last visit with her she discussed changing my medications, which consists of immuno-blockers, to something stronger.
This is added together with the fact that I have an immune system deficiency that I treat weekly with a subcutaneous plasma product. I was diagnosed with this illness ten years ago after being sick with a lifetime of upper respitory illnesses and three, back to back sinus surgeries that were unsuccessful at treating my infection.

In other words, the primary immune deficiency I have has been verified. In addition, my connective tissue/autoimmune disease was verified by a doctor at the Mayo clinic in Jacksonville, Fla.

I am not making this shit up. It is weird and hard to pinpoint and frustrating, but it NOT a fantasy.

It is also not something I can get rid of by doing a workbook to pinpoint my problems, from a psych stand point.

I do journal and write all kind of things. I have a blog and a book of essays and on and on.
I also see a psychiatrist, who, by the way, cut back all of my meds and completely took me off of a few. She told me I am coping incredibly well with all of it and congratulated me.

I even have a therapist and marriage counselor. I have all of those things.

Oh, and I went to Seminary once upon a time and I am trained to do counseling at a basic level myself, not to mention the other degrees and 20 plus years of teaching, where I interacted with students with problems all the time and referred them out to counseling.

In other words, I don’t have a lot of pent up Issues that are impeding my health.


Do I have problems? Hell, yes!
Do I have a perfectly calm and carefree life? Hell, no!

But, I don’t work outside the house anymore and I conserve my energy as well as anyone in my position can.
I have a 15 year old son that I home school, because of health and depression problems.
I have a 20 year old daughter in San Antonio (90 miles away) who calls me a lot because this has been a tough semester and she is transferring.
I also have an 80 year old aunt who lives nearby and drives me insane.
I am pretty upfront about all of that.
My husband works like a dog to keep us all cared for. I cannot lean on him much.

In fact, I think I am pretty good at confronting my problems.

I have a lot of anger. I know that. It is one of my default emotions and it is not particularly helpful.

But, I don’t hold it in.

I exercise as much as I can (pool therapy and dog walks and house work in a 3k square foot home).

I eat very carefully.

I just don’t think the doctor has a point when she tells me my problems are somehow psychosomatic.

My health is a problem, yes. But, it is not one of my own making: neither consciously or unconsciously.
However, if this is what she believes to be true about me, there is probably no way I can expect to get good treatment or problem solving, can I?

So, what to do? Do I run to another rheumatologist? Do I change my approach?
Yes, and no. I will see her one more time before I dump her, and ask her quite frankly about these things.
I will also go visit with the shrink, the therapist and the candle stick maker, to see if I am missing something here.

But the net result of it all is that I can not stand going to doctors anymore. I don’t like any of them. I have given up on working collaboratively. I have just been burned too many damned times.

Also, I am not going to do anything about my physical issues, tests or otherwise, unless I am close to death.
I am going to take my infusions and my medications like a good girl and try to stay healthy on my own. I will see the doctors when I have to for refills and beyond that; I just don’t want to go.

If I am really, really, sick, we’ll know.

No preventative medicine or figuring out why I feel like crap…

I am all done with that.

Next week I am meeting a new internist who also works at the clinic I mentioned above. She is the wife of a friend and was recommended highly. I will run all of this past her.

If she freaks, she isn’t my doctor.

If she tells me I should just back off of rheumatology or switch doctors, I will.

As I said, I am tired of trying so hard.

Those of us with chronic and often rare, poorly understood, conditions have to advocate for ourselves. I have done as good a job at being my own advocate as I can. I think at some point, clamoring to be heard when someone has their fingers in their ears is just not going to work.
In fact, it is taking more energy than I have to keep clamoring.
So, for now, I will be quiet and hope there is no big disaster looming on the horizon that I could have stopped, “if only.”

I will just have to live forward.. in pain and fatigued and with other issues, but going forward.

I won’t let a doctor who is tired of me make me feel as though I am “not sick enough.”

I’m done.

Chicken Hands….

I write with chicken hands this morning.  The pot on the stove is bubbling away: my Passover matzoh ball soup  on its way.

It will even be gluten free… just like  my matzoh, just like me.

The meal will be set, the family I gather around myself to hear the old story…

I think of my ancestors, preparing the meal, carefully Kosher, in dark kitchens.

This day will be long but I will serve all of you, and leave an extra place, for You.

But, I will.

Me and my chicken hands will carefully arrange the plate;  our Seder of tears, questions, memories of slavery, memories of exodus and renewal and it will leave us pondering anew;

When does the journey end? Where does it go?

It doesn’t matter.

For me it is the journey and the questions and inevitably, a few answers…

A sense of lines so deep that nothing: not history, not mass extinction, not distance, can erase.

My family: I have found you at last. You were there the whole time.

My Lord: we have found me at last.

Here at your table:

I knew you were always here with me.

But oh, it has been a long, long, time, since I have felt welcomed home.

Come in, Elijah!  Come in, Adonai.

Come sup at my table and fill me and those I serve…

The slavery, the wars, the losses and gains, all are welcome here.

And I know that You, I AM, are here too.

Thank you! Thank you! From the bottom of my imperfectly Jewish heart to my dirty… chicken hands.