May Day

Sometimes I forget that I'm not not stupid. Or worthless. Or bad. It's usually when I'm pretty sick, like now. It is, of course, now Ehlers-Danlos Awareness Month and someone had posted a French doctor's website and I was reading it. I was going through sentence after sentence of French like someone pushing through heavy doors.

And I thought, "You're pretty good at this!" It was a nice moment. It was really like remembering an old self, the ghost of a self who was really quite adept at learning languages.

But how silly, of course I can still read French. I still remember when I decided to take it up, back when I was 12, because my name, Yvette, was French. I like being Yvette. I don't meet a lot of other Yvettes.

So, my rheumatologist and my orthopedic surgeon have stopped returning my phone calls. This action demolishes the wing of my medical team dedicated to joint manifestation of EDS and as such I am in a lot of pain. A lot of pain. I was shocked and dismayed by the fact that no one would call me back, no one wanted to deal with me. It's like I'm some kind of pain leper. The only reason I even know that this represents a termination of our relationship is that my physical therapist past me a message that invited me to avail myself of a chronic pain program.

I was so angry I almost burst into tears on the spot. Really, I felt disrespected, profoundly so. Probably the maximum amount of disrespect one can feel within the context of a professional relationship. And I was furious that my physical therapist would be complicit in such a display and humiliated that it was happening to me.

It's funny, I guess people come to me ready for a fight and then are shocked to see that I have actual emotions. There was someone doing bicep curls in front of me, someone on the exercise bike behind me and I guess my PT had been ready to have a terse argument with me, but when I start to break down instead, he doesn't know what to do.

Also, unless I have cancer, I'm never having surgery again. I'm never falling for the "I will adequately manage your pain for as long as necessary," spiel again.

The really thoroughly screwed up part is that I probably would recommend my surgeon to another patient. Just not a black one. That sounds awful, but since most people badly affected EDS are women and many of them are young women, I had a healthy sample set to demonstrate that I was the only dissatisfied customer. And everyone else was thrilled.

I don't have very bad pain either. I just have very badly managed pain.

To cap this month of unpleasantries, my PCP is on vacation. I'm on the cancellation list with her stand-in, but I'm not hopeful. There's always urgent care, but I'm feeling very shy of doctors right now.

I have to do something, because it's not going away. I have officially reached the ceiling. The best I can at the maximum dose of this drug. And my best is really bad. I've been in my dirty pajamas for days. It's hard to do everything, including get dressed, make the bed, brush my teeth, shower. In fact, I could never do all of that in the same day. Usually I choose to brush my teeth. And I make sure to drink water so I don't get dehydrated. And I comb my hair so it doesn't tangle.

And I try to get though one day to the next.

Altered Mental Status

That was the diagnosis on my discharge sheet from the ER. They wanted to keep me for observation, but I recognize the effects of my pal dysautonomia when she comes a-callin'.

This is already going to be expensive what with the ambulance ride and the testing and the CAT scan and the catheters, but what gets me is that it didn't have to happen.

It happened because they didn't fill my Florinef on time. It was a joint effort 'they', they my neurologist's office, they my doctor and they the pharmacy. I thought I could get away with one week without it.

I thought wrong.

I was at the cancer center where I go for iron infusions for my anemia (it is also where people go for chemo, hence the name.) As the nurse rooted around for a vein, I began to get light headed. She stuck me around four times...still no luck (looking back, this should have been a sign to me that my blood wasn't flowing properly.)

I was trying to shake the light-headedness which was severe, despite my being seated. I raised my feet. I put my head down on my arm.

Then I passed out.

My mother shook my awake. I looked at her, apologized for 'falling asleep' and then passed out again. My mother called for the nurse who tried to rouse me without success. Then I strange thing happened. I woke up, or thought I did. I sat up.

I couldn't talk. I couldn't really move. I could move and focus my eyes. I sat there and stared into the mid-distance with more and more people calling my name. I was otherwise alert. I could hear, I could see, I could feel and smell.

I could smell those awful smelling salts they stuck under my nose. My eyes watered. But I didn't move or otherwise react.

One nurse goes to call an ambulance. 'Ah, shit.' I think. 'Here we go.' My feeling is of frustration and a bit of confusion. Not fear. I've had, incredibly, more frightening things than this happen to me.

Still, I wish my autonomic nervous system wouldn't do things like this.

Now the EMTs are hauling up by my armpits and knees. Now one is doing a sternal rub. Now he is doing it harder. Now he does it again.

I CAN FEEL IT AND IT REALLY HURTS.

But I can't say so or react. The link between my mind and body is very weak. I wonder if this is what locked-in syndrome is like, and that thought does frighten me, so much so I consciously turn away from it in my mind.

One thing I notice is that if the situation is calm, I can talk a little, although it's very, very difficult.

In a quiet corner in the hospital, waiting for a room I gently poke one of the EMTs in the side. He turns to me instantly, looks at me, says my name. "Wh–?" I manage.

"Where are you?" he guesses. "You're at the hospital. We brought you here after you passed out. Do you remember?"

I start to answer in the affirmative but the other EMT has gotten wind of my return to the world and grabs a nurse. The resulting commotion renders me unable to speak or move again.

It's like I only have a very, very little bit of pressure. And things like loud noises and sudden movements and flashing lights sort of use it all up.

I needed to tell that EMT to lay me flat so I could recover more quickly. I needed to tell them to give me fluids and lot of them and epi too, if necessary.

But I couldn't. And my mother, bless her heart, goes to pieces in these situations and never fails to be worse than useless. She doesn't mention any of my diagnoses to the nurses or doctors, instead talking about the virus I got two years ago and how my joints hurt when the weather gets cold. I was listening to her verbal diarrhea and getting really, really angry and frustrated.

I told her I was typing out a list of my diagnoses and what to do in case of every situation I could think of where I might not be able to speak for myself. That was she can just give it to the doctor and go sit down somewhere.

I love her though.

In any case, next there were catheters and a billion blood samples and a rectal thermometer (I couldn't open my mouth.)

I swear I haven't had my temperature taken in my butt since I could walk and I can assure you it was a very unpleasant and unwelcome experience.

At the end of it all, I calmly asked to go home. I didn't want a bigger bill. I didn't want to take the chance of getting an arrogant or worse, abusive doctor. I was tired and bruised and I wanted to go home to my cats and the new Law and Order SVU (I caught the last half.)

I wanted to tell you all about it, since it relates directly to entry below this one, but I'm still not sure how to feel about it.

When I offend EDS it punishes me with pain. When I offend dysautonomia it does things like this.