Category Archives: Breathing

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.

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

A Pox on Our House

My brother is getting over the chicken pox. He came home from school last week after passing out in the library and being rushed to the emergency room. As he was hooked up to heart monitors to make sure nothing was seriously wrong, mom noticed the first few telltale spots forming. Dr. Idiot insisted that it wasn’t the chicken pox. He’s just now past the part where you fantasize about ripping your skin off. We think he passed out because he hardly had anything to eat that day, and he’s normally a very good eater.

As for me, I’ve been incredibly busy with schoolwork. This is the last 10 days of the semester, which means the workload is really intense. I am exhausted. Once the semester is over, I think I’ll be crashing for a solid week, at least.

Done with psychology (YAY!). Two English papers to go.

In just a few hours, I meet with the pulmonologist for the first time. I’m nervous, especially since I found out that he’s in the same office building as the DOOMatologist that I had a catastrophic experience with the year before last. With any luck, he’ll be nothing like that DOOMatologist, and maybe he’ll even know what to do with me. Ah, a girl can dream…

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Filed under Breathing, Doctors, Family, School, Sick, 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.

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