Tag Archives: Ehlers-Danlos syndrome

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.

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

EDS: How You Can Help

Ehlers-Danlos syndrome threatens the lifestyles and lives of many people all over the world, some without even knowing they have it. In fact, the vascular form of EDS is often diagnosed upon autopsy.

EDS Network C.A.R.E.S. and EDS Today have teamed up to enter Chase Community Giving’s contest for a chance to win $250k. They are in the #1 spot as I type, but we still need all the help we can get.

Please vote for EDS Today. It takes less than a minute of your time and costs you nothing.

EDSers like myself experience dislocations of multiple joints on a daily basis, relentless and excruciating pain, deteriorating physical condition, and the constant threat of death by organ or blood vessel rupture, as well as many secondary medical problems.

And that’s just the tip of the iceberg.

EDS research is seriously underfunded. The money from this contest will go toward funding EDS research. More EDS research increases the possibility of finding a cure. I have hope that a cure will be found in my lifetime.

So, please, click that link and vote for EDS Today. Post the link to your Facebook wall, tweet it, blog about it, pass it along to everyone you know. Please help us to help them find a cure.

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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

Education Frustration

I have two papers to write for English and four chapters to read for psychology by the 30th. Instead of actually doing the work, I’m doing what any good, responsible student would do: I’m blogging about school.

I just registered for Fall classes. Like this semester, I’m taking two classes, Spanish 1 and Art History 1. They have nothing specifically to do with my major of biology. They’re classes that everyone has to take in order to graduate.

Because of my health, or lack thereof, I have a very hard time getting out of the house. So far, all of my classes have been online. I knew there would eventually come a day when I would have to go to campus for a class. That day has come – there is no online option for Spanish 1. I’ll be going onto campus on Monday and Wednesday for an hour and 20 minutes to learn Spanish. Art History 1 was available online, thank God.

I’ve only been taking two classes because I know that this is the most I can do without crashing. I desperately wish I could take the “usual” number of classes, and I was very tempted to just sign up and go for it. Fuck you, health problems!

Aside from my mom and a few close friends, nobody understands why I can’t just go to school like everyone else. My doctors don’t get it. Most of my family doesn’t get it. Nobody gets it.

I’m getting straight As, so I’m going to be on the Dean’s List and 4.0 List, right? WRONG! I won’t be getting my name in the newspaper for being on the Dean’s List and 4.0 List because I’m not able to take enough classes to qualify for either list. Some of my doctors have said that they’re going to be looking out for my name in the paper, but it won’t be there. And they don’t get it. It’s not fair.

Getting As in two measly classes is no big deal, anyway. At least not in my school’s opinion.

My reduced life expectancy combined with the snail’s pace at which I’m taking classes means that I may never actually graduate. Even if I do graduate, I’m not well enough to even get a job. My efforts will mostly likely go unnoticed. It’s not fair.

Students who struggle against illness to take two classes deserve to be acknowledged just as much as full-time students. I hope people begin to understand this someday. Until then, I’m sticking with it, because my mind is a terrible thing to waste.

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Filed under Anger, EDS, Frustration, School

A Pain in the Neck

I have a ton of reading that I need to do for psychology, but my neck is being especially painful. My whole neck and both shoulders are burning, stinging, and feel cold-hot, very much like the feeling you get in your fingers after you’ve been outside in the freezing cold for far too long. Every time I sit up to try to get some reading done, the burning, stinging, and pain starts up again. I’ve taken my painkillers, but they aren’t cutting it, and they make me even more tired than usual.

Mom will without a doubt try to convince me to let her read to me. Unfortunately, I have a hard time retaining information when it’s read to me. I learn and remember better when I can read for myself. Plus, I don’t like letting mom help me. It’s not because she’s not a good helper – she’s a great helper. It’s just that…it’s not her job to help me. I signed up for school, I should be able to do it myself.

I’ve always been stubborn when it comes to accepting help from others. I would sooner let myself get angry, become frustrated, and fall behind than allow someone to help me.

I have no idea why.

This stubborn refusal to accept help even extends to my dealings with doctors. I hate asking for help so much that I’ve let symptoms go unchecked for years, even decades. I get irritated with doctors who don’t ask the kinds of questions that pull information out of me, even though it’s my responsibility to bring things up and not theirs to drag it out of me.

A small part of me thinks that if I just opened myself up to people and let myself be helped, my life could be a lot better. Then, there’s the other part of me, the much bigger part that’s afraid of getting shot down if I open myself up.

I know I can choose which part to listen to, and that I should probably choose the part that’s telling me to open up. I just wish I knew how.

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Filed under Doctors, EDS, Frustration, Medication, Pain, School

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

TennCare Trauma

TennCare, my terrible, horrible, no-good, very-bad health insurance, is run by a bunch of assholes who have no understanding of how chronic illness “works.” If they had any understanding of how chronic illness works, they would happily pay for more than five prescriptions per month, cover more than three long-acting painkillers (two of which are morphine-based, so if you’re allergic to morphine, you’re fucked!) without the patient having to put up one hell of a fight, and allow you to see certain doctors, like my pain management doctor, for longer than three months, or three visits, whichever comes first, at a time.

When it comes to medical insurance, my attitude is that of, “Sit down, shut up, and cover it WITHOUT me having to fight you for it.” I need not concern myself with time limits, visit limits, Preferred Drug Lists, or Prior Authorizations. Needless to say, TennCare does not share my attitude toward medical insurance.

I’ve had to constantly fight TennCare for everything I have. Seeing my pain management doctor is no exception. Today, I started fighting the good fight once again. This time, it’s to change “managed care organizations” (and check to see if my long-acting pain medication has been approved for six more glorious months). I have to change managed care organizations so I can continue to see my pain management doctor.

There are two managed care organizations: BlueCare and Americhoice. I have BlueCare. Apparently, BlueCare is either so shitty or so hard to work with that my pain doctor’s office will no longer participate in the BlueCare program. They do, however, participate in the Americhoice program (with no three-month/three-visit restriction!).

Now, my only choices are switch to Americhoice or stop seeing my pain management doctor. The latter is not an option – my GP’s office will not manage my pain and, as far as I know, there is nobody else in this area who is not afraid to prescribe narcotics to a 26-year-old. Not taking my morphine is not an option – if I do that, I’ll turn into even more of a homicidal vegetable than I am now (go ahead, let your mind take you there).

I asked to be switched to Americhoice once before, but my request was denied. I usually try not to be negative, but I almost expect to be denied this time around. Maybe my request will be approved, but then my pain management doctor’s office will drop Americhoice patients, too. That’s just my luck when it comes to this kind of thing.

Not only am I afraid of fighting my insurance, I can’t stop thinking that my pain doctor is just trying to get rid of me. I know this is ridiculous: I was the one who wrote to him, and if he didn’t want to see me, he wouldn’t have responded. I can’t seem to stop my mind from going there, though.

This morning, I woke up and made 57 thousand excuses not to call TennCare and get the process started. I hate using the phone to begin with – autism spectrum disorders and the phone do not mix – but I bit the bullet and took care of it.

And now we play the waiting game. The next time I open my mailbox and see a letter from TennCare, my heart will stop for a second and that all-too-familiar sick feeling will rise in my chest.

Until then, I wait, and I worry.

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Filed under Doctors, EDS, Insurance, Medicaid, Pain, TennCare