Dysautonomia Awareness Month – Saturday

Today, I can’t figure out my alarm. There’s this shrieking and everything is shaking and I can’t understand what is happening or why. I turn off my cell phone’s reminder to drink water before I can puzzle out how to shut off the alarm. I still don’t understand, exactly, what it is or why it is making noise. I fall asleep and wake up again when my ever-vigilant sister bangs on the door and groggily asks me if I took my meds. I groan out a “no” and grope for them. I fall asleep again with my medications actually in my hand.

I finally wake up when my grip on the handful of pills loosens and I realize that something is wrong. I take them. I get up for a second and use the bathroom, but nausea, dizziness, and exhaustion drive me back to bed. I curl up experimentally on my bad side, and I can stand it. Still, it hurts rather a lot and makes me feel even more sick, so after a bit I roll back over … and the second the pain is gone, I’m out cold again. I wake up a bit after noon. I’ve slept half the day away.

The morning is gone, and my plans for it are too. I’m now off-schedule for medications. I’m still a bit tired, but far more comfortable than I have been for weeks. I pick up my phone and decide to do a quick scroll through social media. My feeds are … there’s news about a shooting, in a synagogue. On Saturday. I can’t find out any details. I head over to the news sites and see that it is in Pittsburgh. Squirrel Hill. Large, old, established, and someone has gone straight into the sanctuary of peaceful worshipers and murdered them. I can’t help but feel a slight stab of relief that it is not New York or Los Angeles, the areas where my distantly related Jewish family members live. There is no escaping the repercussions of a hate crime such as this. Everyone will have known somebody. Or known somebody who knows somebody. My relatives will be alive to relate that when we gather together for family holidays. I confirm this as best I can later on and throughout the day.

I spend a lot of the rest of the day doing easy clean-up. I put away clothes and take pleasure in the straightened room. I mark up my calendar with the rest of my classes. I make up a new schedule that’s a bit more streamlined and will hopefully help me manage medications a little bit better. I avoid doing medical research and social media. I listen to a book on tape while putting up something I’ve promised myself I’d do since July — a bunch of cork boards on which fabric, ribbon, cord, pictures, hanging ornaments, kids toys, postcards, and more are hung. Every morning I can get up and see my family, the places I’ve been and neat things I’ve experienced, gifts and letters of encouragement from friends, and just general silliness beaming at me from my wall. I want to print out some more things and add them to the wall here soon. I’d desperately like to go to a concert.

There’s one that evening, but by the time it starts — 8 pm — I know I’m going to be done. I need to walk on down to the post office box and mail some letters, but I can feel it. I’m already done. My legs are turning a sort of cold that has nothing to do with the ambient temperature. I’m feeling a bit off-balance. I start to seriously consider whether it’s worth it to walk down the 20 steps to the bathroom and pull out a new box of Kleenex, or whether it’s okay to use the somewhat suspicious brown paper towel fragments lying on the counter. (I chose the questionable fragments and don’t immediately die, so I figure they were probably fine.) We fix gnocchi and chicken for dinner, and I sample some dairy.

Dairy and I have had a troubled relationship, but I’m hoping to find out if it is okay now. It’s been a pretty good day, with no flares, and I have some ultra-deluxe super-duper wowie-zowie yogurt to try out. I limit myself to a couple of spoonfuls. I make it through dinner, but I’m feeling more queasy than normal. By that evening, I’m sucking on oyster crackers and sipping ginger ale. I watch three episodes of the TV show Bones while clutching a heating pad to my chest and trying not to whimper. There’s about 45 minutes where I really don’t feel much like moving at all, and instead stay curled over myself, idly using one finger to play Candy Crush. The repetitive sounds are actually rather soothing. The nerve block is working more often than not, but in the evening there’s a hole. I get a lot of breakthrough pain. My medications are mostly out of my system and the next round hasn’t kicked in yet. My allergies and pain both increase. Normally it’s okay. I can be at home, alone, during those hours. It’s just… I don’t always want to be home alone.

I flip through email on my phone. I need to do some important stuff, but it’s very hard to focus. The email I’m waiting for, hoping for, despite trying very hard not to, isn’t there — the email saying I’ve been matched to a service dog prospect. We’re looking for a poodle mix, young but not necessarily a puppy. I think that right now, if the poor dog just took over making sure I was responsive in the morning and took meds, my sister would probably have her stress cut in half. I finally open social media and brace myself to read through reports and reactions.

Much later, I wash my face and brush my teeth, but dysautonomia and nausea rear up partway through and I finish putting on my face cream sitting on the bathroom floor. I don’t give in, though. I make it through, and I’m proud as can be that I finished the day without throwing up. It’s about my only accomplishment. I’m flushed and a bit itchy, but it’s not at my Bendaryl level yet. This is the second day this week I haven’t taken Benadryl as a rescue med in addition to my normal medications. I lasted longer and it’s less severe. All good things.

A while ago, I found an infographic.

https://scontent-ort2-2.xx.fbcdn.net/v/t1.0-9/44918372_1861720803926790_4690883823796224000_n.png?_nc_cat=111&_nc_ht=scontent-ort2-2.xx&oh=6e0a1d79e6ebe7c0a919304b42156754&oe=5C86296E

I don’t know what it is like to have end-stage kidney failure. I only know what it is like to have POTS, MCAS, EDS, and various other comorbids, like the intercostal neuralgia that has been the focus of so much of my week. I know that it actually is very, very difficult. I am so so lucky. I know that. I have family, friends, and nice place to live, and fulfilling work. I have gradually assembled a medical team that is usually very competent (although perhaps the bedside manner this week could have used some work!). I live someplace where I can get to this care relatively easily and inexpensively, compared to those who have to routinely travel out-of state.

I also can’t work full time. I never make enough money not to be worried about it, or to wince when I pay for groceries (which are always expensive because mast cell means several cheap foods will ultimately equal very expensive ER trips for me). My medical team still can’t manage to address my concerns with compassion and anything other than guesses some days, or get needed drugs set up in a timely manner. Shortages of fludrocortisone, used to treat my POTS, made a few weeks of the last couple of months pretty worrisome. There’s also a shortage of Benadryl now. This summer, it was epinephrine. These are all very important drugs for a great many people, and due to profit margins and bad planning and a host of other incidents, we’re all in increased danger, praying that this week, we won’t need it. I’m not living on my own right now, and I’m really not able to. I still can’t drive, walk more than a mile without needing to balance off of someone, and I’m not going to a concert tonight because my body just won’t. I’m not going to my academic field’s conference because I’m waiting on a drug to start and I can’t afford the conference and medical care. I am disabled Cinderella. And I shan’t go to the ball anytime soon.

I’m not writing this for pity. (Or at least, 99% not). 🙂

No. What I want understood is that this is what medically lucky looks like as a chronically ill patient. The above? That’s a good outcome. Run that through your mind a few times … end-stage kidney failure is what luck looks like to dysautonomia patients. There is no known cure.

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