Tag Archives: dysautonomia

The Latest Episode

No, I haven’t forgotten about Rx for Distress. It’s just that stuff has been happening and I’ve been feeling and doing worse than usual.

Way back in February, a few days after my birthday, I had this episode. The episode didn’t last very long, but it made me feel so horrible physically that I still lack the ability to spell the words to describe exactly how I felt. I was shaking violently (not like a seizure; more like shaking chills), unable to regulate my body temperature, felt ice-cold internally but was burning to the touch, had an elevated heart rate that would go through the roof if I so much as lifted my head off of the pillow, and spent several hours puking despite my anti-puke medication. I made the mistake of trying to walk to the bathroom during the episode. This resulted in my head feeling like it might actually explode and my heart rate going so high that I couldn’t feel it to calculate it. I had to crawl back to my bedroom so I wouldn’t pass out.

Thanks so much for the wonderful belated birthday present, body. It’s the thought that counts.

I didn’t mention this episode during my March doctor’s appointment because I figured it was just a one-time thing.

Unfortunately, I was wrong. I had another one at the end of May, about 10 days before my every-three-months appointment with my pain guy. This time, I called mom downstairs to help me; I just couldn’t risk getting up. I might not have been physically able to get up.

I didn’t bounce back from that episode like I did from the one in February. For about a week, I couldn’t sit up for more than 15-30 minutes without my heart rate going up and my body temperature going crazy.

I’ve had two more episodes: One after my appointment with my pain guy and another after going to the animal shelter to volunteer and play with the kittens I had to put off seeing because my crappy body crapped out on me.

The episodes seem to be related to exertion – they come on after I’ve been out and about. I still have to limit how long I sit up to keep the symptoms from coming back.

I am truly bedbound now, spending most of my time in my bed or on the couch. I have had to miss family functions that I really wanted to go to. When mom and Isaiah get home, they downplay their enjoyment, telling me that I really didn’t miss much at all. That’s beside the point; I should be able to go. And it’s not just about me, it’s about Isaiah. I hate what my illness is doing to his memories of me. I never could have imagined my life would turn out like this.

I try to be both positive and realistic, but I’m finding it harder and harder to be positive. All of my friends are far away geographically, so I’ve been feeling very alone. I don’t know how I’d make it if I didn’t have the Internet.

I have an appointment with my family doctor on the 24th, which will most likely result in yet another referral to a specialist. I’m not hopeful that anyone around here will be able to help me. There is a little voice inside of me that says there is someone out there who can help me, and that until we find each other, I just have to keep hanging on.

Just keep hanging on.

2 Comments

Filed under Anger, Doctors, Dysautonomia, EDS, Family, Frustration, Sick, Specialists

Don’t Hold Your Breath

So, the pulmonologist. He wasn’t terrible, but he wasn’t the wonderful doctor who will do anything to figure out what’s wrong, either. The whole experience was exhausting and confirmed what I’ve been feeling for a long time: I may never find a doctor who can help my dysautonomia, or whatever is making me feel so shitty, let alone understand it in the first place.

I always try to prepare as thoroughly as possible for appointments. I do my homework and bring as much information as I can. This appointment was no exception. I filled out all of the paperwork they mailed me and printed out my surgical history and hospitalizations on a separate sheet because they don’t fit in the lines anymore. I brought my medications with me and actually remembered to bring all of my supplements. Sometimes, it seems like the more prepared I am for them, the less prepared they are for me.

My appointment was supposed to be at 12:30, but I got there early after getting breakfast and walking around Walmart for a while. So, I waited. And waited. And waited. The waiting room continued to fill up while nobody was being called back. Finally, I was called back, vitals taken (but not before starting a fistfight with the scale), put in a room, and told the doctor would be there shortly. And then I waited. And waited. And waited. I sat there on a bench that was almost as creaky as my body, my pain intensifying as time crawled onward.

The same nurse who took my vitals poked her head in and asked if I was ok and if I wanted my mom to come back there. I said I was fine and that I didn’t need my mom to come back there. She explained that the doctor was still at the hospital, but he’d be back in just a few minutes. I’ve heard that line before.

About ten minutes later, a different woman came in and said that we needed to get started on some of the tests that the doctor wanted to have done. By that time, I’d been sitting up for so long that moving was nearly impossible. I was able to stand up without bursting into flames, but walking was another story. My legs were shaking so badly, but the woman barely noticed. She continued to walk at her normal pace, me wobbling along behind her.

She approached me incredulously about why I was there. She said she didn’t understand why my doctor sent me there before trying to treat me. I explained my conditions to her, and she looked them up online to read about them herself. She then proceeded to make comments about people who had it worse than I did. For the mother of someone with type 1 diabetes, you’d think she would be more compassionate.

Then came about a half hour of pulmonary function tests, a breathing treatment, and then more pulmonary function tests. Pulmonary function tests consist of breathing strangely into a tube while locked in a box, all while a lady screams at you over a loudspeaker to BLOW HARDER BLOW BLOW BLOW BLOW BLOW!!! It gets old pretty quickly. My jaw was not amused. There was drool everywhere. Drool-moistened cardboard smells nasty.

After the PFTs, I was taken back to my room to wait for the doctor. Ten minutes later, the young, good-looking doctor was shaking my hand. I explained why I was there. He asked me a few questions, like whether or not I smoked or was currently exposed to secondhand smoke (no and no). Surprisingly, he didn’t mention my EDS or dysautonomia. I mentioned it several times, but only got a response about it when I really probed him. Despite the fact that I wrote about my severe visual impairment in the paperwork and told him about it that very day, he made several nonverbal gestures that I couldn’t see, and he got angry with me when I didn’t respond to his gestures.

He said I have very small bronchial tubes and underdeveloped lungs. There is nothing they can do about it. I asked him a few times if the dysautonomia had anything to do with why breathing seems to take so much effort, and he finally and nonchalantly explained that my breathing muscles aren’t getting signals from my brain. He said this will most likely continue to get worse until…and he trailed off. I asked him what would happen if it does get worse. He changed the subject. I asked him a second time. He quickly scribbled out a prescription for an inhaler and an order for labwork and a chest x-ray. I asked how the inhaler would help with my problems if I didn’t have asthma. He said he would see me again in three months.

So there you have it. Yet another doctor who knows of dysautonomia, but has no idea how to manage it or even try to lessen its symptoms. The whole ordeal took four hours, and I left there feeling worse than when I arrived. Oddly (and frustratingly) enough, mom wasn’t pissed off by how the appointment went. She’s just happy whenever we find out I don’t need surgery.

I’m done. I’m done being told I’m only going to get more and more uncomfortable and dysfunctional as time goes on but, oh, there’s nothing we can do for you. And yet I see other people with dysautonomia and EDS who have doctors who keep trying and fighting to help their patients feel better. Why can’t I have one of those doctors? Do I need more money (yes)? Fancier things (sure)? Bigger boobs (nah)?

Maybe it’s not the doctor. Maybe it’s me. If I was just a better, easier patient, maybe things would be better and easier for me.

6 Comments

Filed under Anger, Breathing, Doctors, Dysautonomia, EDS, Frustration, Specialists, Tired

Old People Diseases

When I say I’m only 26, but my body acts like it’s 86, I’m not fucking kidding! I was diagnosed with osteoporosis when I was 23, I started menopause when I was 21 (that was surgically-induced, although that wasn’t the original plan), and I had my first joint replacement when I was 20.

Now, I have another one to add to my list: high cholesterol.

On Wednesday, I paid a visit to my doctor to check up on some bloodwork I had done way back in December. I also had to get my osteoporosis medicine refilled, and I took the opportunity to complain about the difficulty I’ve had with breathing properly.

In addition to my osteoporosis medicine and a referral to a (very generous, I’ll get to it in a minute) pulmonologist, I left my doctor’s office with a shiny new prescription for cholesterol-lowering medicine. My total cholesterol was 291, but he said that my good cholesterol was high, which is, well, good! He also said that based on my age, diet (ha! I barely eat!), and malabsorption issues, the cause of the high cholesterol is genetic.

Ah, how my genes love me.

So, on to the pulmonologist! My difficulty breathing has been going on for a very long time. Most doctors that I mention it to just blame it either on dysautonomia (which we know I do have), or psychosis (which we know I do don’t sometimes maybe almost have). It got to the point where I was more scared of living with it in silence than I was of bringing it up with the doctor. Thankfully, he was concerned enough (or just wanted to shut me up enough) to refer me to a specialist.

The doctor told me about this awesome pulmonologist. He said that this doctor was young, but cautioned me not to let myself be fooled by this doctor’s youth. He went on to say that this doctor will search and ask other doctors until he figures out what’s wrong.

Unfortunately, TennCare won’t pay for me to see this doctor. Of course! That’s because this doctor is probably good. TennCare doesn’t pay for anything good.

But wait! There’s more! As soon as this pulmonologist heard that I have Ehlers-Danlos, he decided he wanted to see me anyway, insurance be damned.

Take THAT, TennCare! You can kiss the fattest part of my ass!

I’m excited and terrified about this appointment at the same time. I’m excited that I may finally get an answer as to why I have such a hard time breathing, but I’m terrified that the only answer will be that it’s something there is no treatment for, or that it’s because I’m crazy.

I’m just thankful that my family doctor took me seriously enough to send me to a specialist. Now, let’s hope that the specialist takes me just as seriously.

Leave a comment

Filed under Breathing, Doctors, Dysautonomia, EDS, Insurance, Medicaid, Specialists, TennCare