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.
I AM NOT THE CAUSE OF MY OWN INFLAMMATION.
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.