This is Why I Hate Doctors

If hope is a thing with feathers, despair is a thing with teeth. I was gazing at the fall finery one afternoon, when despair got a grip on me.

I am never going to get better. I had actually realized this before, though I'm not sure where. It might have been in the ER during the five hour wait to be seen, or in the small, dark hospital room with the neurology resident.

In any case, surely it is true.

My sister is the best gift giver in the family, partly out of excellent instincts and partly out of wealth, working as an investigator for the federal government. Again, she asked me what sort of gifts I would like for Christmas. And again, I ended up with things like duvet covers, a new alarm clock, luxe pajamas. My life has become so narrow, lopped off and cauterized a dozen times till only a stump remains. Somewhere behind me is the bulk of my life.

Now I'm pretty sure my neck has become unstable, as a result of muscle wasting from my untreated GI issues. I've had a headache for three weeks and episodes of leg weakness so profound I can't stand up. I've also had choking spells where it feels like my windpipe is closing.

What frightens me most is that the sicker I get, the more my doctors edge away from me. None of them seem to feel any sort of "commitment." When my legs were so weak I couldn't walk without falling I went to the ER. They didn't want to admit me because the neurology resident said it was "just your joints." My father had to argue with them that he couldn't take care of me.

Once in, the MRI of my head and neck were okay, so they discharged me with a prescription for muscle relaxants without even waiting to see if they would help. It's not legal to discharge someone who can't take care of themselves properly, so first they gave me a walker.

All the while, they kept implying that there was nothing really wrong with me, asking questions like, "Do you have any hobbies?" and "Why aren't you working?" One resident asked me, "Why don't you want to go home? Are you being abused at home?"

"I can't walk!" I exploded. I must have fallen six times in the hospital, because the doctors were never fast enough to catch me when they asked me to walk for them. I still have the bruise on my hip.

It got so tiring having to stand up for myself in the face of such behavior. Everything was getting to me: the lack of pain management (ice packs and tylenol) the ignorance of EDS and the refusal to take instruction, and worst of all, the attitude of crushing indifference.

Rather than a patient, I felt more like a fly that refused to land so it could be swatted.

Current Events

I don't want to post another downer entry, so I'll just leave it as: doing slightly worse, seeing my orthopedic surgeon on Monday and since my rheumatologist is in the same building I hope to handcuff myself to the waiting room furniture or otherwise stage some act of civil disobidience until I'm allowed to see her. I can't carry on like this; I know there's an ER visit in my future and I hate going to the ER for anything, but pain is the worst. I really hope I manage to avoid it. In other news where I don't despair of my life, I bought an iPad since I'm always slumming around and don't always get the luxury of working at my desk. I also got a wireless keyboard, so I could type more easily. Once I found out you can't buy a cheap wireless keyboard (I went with Apple's offical version) things went a lot easier. With the Trayvon Martin case as a spring board, many media sources have tentatively begun discussing rsce. Good. It's about time. It's our responsibiity as citizens to discuss inequalities in our country. And they exist! Between the races, between men and women between rich and poor. And they'll never go while while people continue to hide from the issues saying, "We're all Americans." Well, like I said in my last entry, just because you espouse it doesn't mean you are it. The United States were founded on shaky moral ground. We all know this. and if we all do love our country we should do everything we can to mend it and help it become the things it claims to be. That's clumsily stated, but honest.

The Dilemma

I spent yesterday morning scrubbing tape residue off my body with rubbing alcohol, being tender around the spots where the tape had ripped my skin when it came off.

The area where the central line went in is itching ferociously which is good; it's healing. This is (was) my central line. Her name is Terri. She needed a name because it was like having an alien in my chest. An alien who made me cough whenever I breathed too deeply and who poked me in the lung on the way in.

My hair has to wait to get washed because my shoulders hurt too badly and I'm just too damn tired to go through the ordeal of wash and condition and de-tangle and deep condition and rinse and de-tangle and leave-in condition then twist and pin.

Everything hurts. I lost much of my muscle with that ten pounds and now my joints are all over the place. I even made an appointment with pain management–reluctantly.The last time I went I got a prescription, but as I turned to leave, my doctor said, "remember you can't smoke any weed with this prescription." It was beyond insulting.

As far as my nausea goes, it's still here and Zofran only takes the edge off. The strange thing is that it goes almost totally away when I'm not physically active, and surges back when I am. The more active I am, the worse it is (has anyone dealt with this before? Does anyone know why this is?) This means that the doctors can't observe it while I am in the hospital, which is really, really frustrating.

It's like a part-time gastroparesis or something. When I went Christmas shopping with my mother in Columbus we walked for hours, and I was popping Zofran all the way, even though I hadn't had anything to drink besides coffee. I couldn't eat at all that day and at one point it got so bad I just went to car and lay down in the back seat. Yet the next day, I was able to eat almost normally.

So I need...what? A neurologist specializing in migraine? Or a GI doctor specializing in motility disorder? And do I go with the hospital system that has the better and more experienced doctors, but only so-so hospital care (where they play keep-away with my pain medication every single time.) Do I go with the system where the doctor aren't experts but the hospital care is great and the doctors and nurses are always willing to listen to my explanation of EDS?

I'm tempted to go with the latter. My horrific experiences in bad hospitals in Chicago and Cleveland left me with PTSD, nightmares and flashbacks brought on by something as innocuous as seeing a medical drama on TV. Just being in a hospital is in itself a highly traumatic experience and I don't want to make it worse by adding doctors and nurses who are being sly by keeping my pain medicine away from me while at the same time acting as if they've done nothing wrong.

This sucks. I haven't been this sick in awhile....

"And when I look into the future I see danger in its eyes"

2010. The year I took it up the rear end from so many doctors, I should have been the one getting paid.

How I learned to see doctors as a cabal of siblings and half-siblings, some of whom know the others are rotten to the core but refuse to acknowledge it, at least to people outside the 'family.' Oh, and psychiatrists are the redheads.

My mother is in her early 50s. She is developing POTS. I worry about my sister as well and I hope that she is not affected as I am, that she can go further in life and like I aspired to, make every dream come true.

How can I give up on this wonderful gift, my one and only life? To me the stages of grief and loss feel like hanging onto the edge of the sheer cliff. Anything to get back to the way things used to be. Hauling myself up as hard as I can, I see footsteps of friends going about their daily lives. They can't see me and I can't see their faces. We're strangers again.

Acceptance would be realizing the side of the cliff is itself solid ground. Just a different sort of solid ground, meant to be traveled in another direction and in a different way.

In OT I held a pen "correctly" for the first time in my life, thanks to a sample ring splint designed to hold my the joint at the tip of my finger in place. I had an image of myself, staying in morning and afternoon recesses in the second grade, practicing cursive Ks and Qs, my hand aching mercilessly. Being made to write phrases over and over for punishment and then having to do it again when my writing became illegible.

None of that had to happen. I had actually started to believe it myself: that I was willful, stubborn and flaky.

I wrote my name over and over again on the yellow Post-It K. passed to me.

Yvette

Yvette

Yvette

Yvette

Maybe some comfort for that little girl with the sore hand.

As a rule, I never make more than 2 resolutions for the new year. This is what I find I can keep up with.

But I find myself at a loss for what to resolve. I started with finishing my manuscript. That was easy enough. But what else? There are things I need to do, like file bankruptcy, but what sort of resolution is that?

Because it began to snow today, I am in bed. I am hoping the drug store is not feeling judgy today and will fill my out-of-state pain prescription...which wouldn't have to be out-of-state if I just had a treating doctor with a listening ear, an open mind and a compassionate heart.

Like my new primary. She had been my grandmother's doctor and I remembered her kindness. And to my surprise, she is familiar with EDS AND connective tissue disorders. She used to work in a research clinic and has seen her fair share of both.

She asked if there was anything I needed right away and I said "No..."

I meant yes, but I was afraid. When I meet a doctor now, my essential emotion is fear. Carefully disguised fear.

I just can't seem to help it.

The thing that went wrong during my surgery was I started bleeding and wouldn't stop. I'm still bleeding. Not a gush, but a slow leak, like having a period that just won't stop. My doctor is dragging his heels about it, and I'm feeling more lethargic by the day. How can I not be afraid. He offered to destroy my uterine lining (which would sterilize me) and I said no. Then he acted a bit as if I were being unreasonable. But I'm thirty not fifty and as much as I don't want to pass my fantastic genes to my children, I'm not prepared to scorch the earth just yet.

He said, "Well, we have to stop the bleeding." I said, "Yes we do."

And then, he told me to have my blood drawn so we could keep an eye on my dropping hemoglobin and take action when the time comes.

I had such a wonderful holiday with my sister too, seeing Cirque du Soleil, eating Chinese, shopping the after Christmas sales and drinking a good four bottles of champagne.

I kind of hate that this is hanging over my head at the moment. It's always something.

But I'm not done with this life yet. I'll make something of everything yet.

I'd burn them if they weren't so expensive

I was going to just go and have my records sent to my new doctors. My mother suggested I go get them myself since I had some new appointments coming up very soon.

We went together to pick up the records. I let her handle the exchange. It was $25 for 10 pages.

I read her notes once we got back to the car. I reclined my seat, as I often do after a long day.

I read the notes carefully. We arrived home. My mother closed the garage door and got out, going into the house. I didn't move. She left. The lights cut out so I fumbled and turned the car light on to read the last few page.

What I learned was this. The doctor who I asked to be my pcp while I was in the hospital with dysautonomia symptoms, the doctor I chose because she was Black and a woman like me, never believed me.

She never believed me.

Always in her notes, she writes my primary diagnosis as depression, secondary diagnosis as chronic pain syndrome. Later her notes turn irate as she says that I complain of "multiple non-specific symptoms" After my trip to Philadelphia, where I was prescribed a knee brace she humorously notes "pt wearing brace on left knee subjective complaints of multiple jt (joint) pain, no objective findings." Again I complain of "non specific symptoms." These symptoms were the vertigo, double vision and unsteadiness brought on by my migraines.

In assessment and plan she diagnoses me with depression again, this time with possible "hypochondriasis." She also notes that I've been "doctor shopping." Wow. And all the way to the east coast. You'd almost think I was desperate or something.

In my last entry, I said that the fact that I had EDS seemed to be missing from discussions I had with my doctor and her staff.

Well, I was right. Either she never read the reports she received from the geneticists or she gravely misinterpreted them. It was around the holidays, this time last year, maybe she just skimmed that shit like an unwanted catalog.

Mostly, I'm angry at myself for not knowing how phony she was being all this time. I'd seen signs before, in the way she dealt with other patients, in the flippant manner during our appointments, but I didn't want to believe she'd deal with me in such a way.

I don't intend to show these records to a single other doctor. If a doctor insists on requesting them, I'll have to inform them that the contents are so naive and misguided as to be almost libelous.

I'm just glad that she's not my doctor anymore so I'm not wasting my limited funds on being strung along politely in public and maligned in private.

I didn't shed a tear, but my chest felt tight. I tried to shed the feeling of being betrayed. As I sat, reading, trying to clear my mind, the concrete (but again peripheral) feeling came over me that all this feeling of betrayal and wrongdoing would one day be replaced by love. A new love, strong and comforting, the exact opposite of the way I presently felt and thus, its nullifier.

Someday is good enough.