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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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Rx for Distress, Part 2

drnickThank you for all of your wonderful and supportive comments on my previous post. I’m glad, but also sad, to see that I’m not alone. I hope some good can come from sharing these exasperating experiences.

On to more things that dimwitted doctors do that make us feel like we’d rather light ourselves on fire and jump out a window than go to another doctor’s appointment!

Joking about my illness. The only time this is acceptable is immediately after I’ve joked about it myself. Otherwise, it’s just plain awkward and makes you look like a complete idiot. When I moved to Virginia, Medicaid assigned a doctor to me based on his proximity to my home. Medicaid is notorious for assigning people to the shittiest doctors on the planet. I have always had to hunt down a good one and ask Medicaid to change it in their records. Despite my better judgment, I decided to give this guy a chance. How bad could he be? After ten minutes of no eye contact, no understanding, no compassion, and no progress, he asked me whether or not I was employed. I told him no, that my symptoms kept me from doing much outside the home. Boy, was that a mistake! He insinuated that I was not as sick as I thought I was, and he proceeded to argue with me for several minutes. Then, he produced this gem, “Well, maybe you could join the circus, then.” I never went back there again.

Laziness. Getting out of bed and walking around my house takes an enormous amount of effort and takes a lot out of me. Even when I’m feeling my best, I only feel well enough to sit up at the computer for very short periods of time. I spend most of my time in bed or on the couch. That being said, you can imagine how hard it is for me not only to get out of the house to make it to an appointment, but also to have to sit up for extended periods of time just waiting to be seen. I make a significant effort to be presentable and pleasant for you, so I expect you to make a significant effort to listen, respond, and provide treatment, or at least support or suggestions, to me. Glancing at my chart for two seconds (or not at all) and then telling me you can’t help me after ordering no tests, asking few or no questions, and making no suggestions is absolutely, completely deplorable! Doctors overbook, that’s an unfortunate fact. If I’m only going to get five minutes with you, I want those five minutes to be productive. I understand that most of my conditions are incurable and have few, if any, treatment options. If there is absolutely nothing you can do for me, at least be apologetic about it, “I know you went out of your way and took time out of your day to come see me. I’m very sorry that there’s nothing I can do for you. I wish there was something I could do to help.” It’s better than saying nothing, and it shows that you might just give a damn after all.

Stay tuned for the next edition of Rx for Distress, including such subjects as: Lying, bullshitting, or taking me for a ride; being overly negative or overly positive; and nasty nurses, sucky staff, and other nincompoopery.

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Rx for Distress, Part 1

Dr. NickLet’s talk about doctors, shall we? I’ll leave out the good and instead focus on the bad and the ugly. Over the next few posts, I’ll be sharing what, in my opinion, makes a Dr. Nick (the malpracticing doctor from The Simpsons). These clinical catastrophes are frighteningly common and should have most patients heading for the hills. I encourage you to share your stories, opinions, and experiences, any of which might be used in future posts.

I’ll start with the simplest, yet most commonly perpetrated, blunder.

Consistently misdispronounciating my name or the name of my illness. My name is not Iona, Mona, Ramona, or Naomi, and I do not have Hurler’s syndrome. I can understand mispronouncing my name or the name of my illness the first time we meet. After that, getting my name or the name of my illness wrong just shows me that you cannot be bothered to take the time or make the effort to learn about me. If you cannot be bothered to take the time or make the effort to learn about me, then you obviously cannot be bothered to take the time or make the effort to treat me.

Now, I’ll move along to a situation that can kill a doctor-patient relationship in an instant.

Assuming that I can’t possibly know anything because I’m “just a patient.” Unfortunately, because my conditions are rare, I can’t count on my doctors to know everything, or anything, about them. This means that I do a lot of educating whenever I go to the doctor. This education, however, only works when the doctor is open to receiving it. Here’s a newsflash to many doctors: Graduating from medical school does not give you an excuse to not listen to or learn from your patients. You don’t always know what is best for every patient, and you definitely don’t know everything, so it is completely unacceptable to insist that you do. My GP wanted me to see a rheumatologist to get his opinion on how to best manage my condition. I was reluctant to go because I have yet to have an experience with a rheumatologist that could possibly qualify as decent. I wasn’t given a choice – it was see the rheumatologist or have my pain medication taken away. I saw him once before and knew he wasn’t that great, so I brought my mom with me. It made absolutely no difference. He kept asking me why I didn’t do the physical therapy he recommended (because I couldn’t) and telling me that I’d be fine if I just walked 2-3 miles every day! Mom and I tried to disagree with him as politely as we could, but to no avail. He just kept repeating himself, only LOUDER and s-l-o-w-e-r. It’s very hard to piss my mom off, but even she stood up and headed for the door before the doctor was finished berating us. He continued to spout incorrect information about EDS and how to manage it, and tried to convince me that starting pain management would be the biggest mistake I ever made. He was wrong – about everything. Doctors like this one should retire, immediately.

Be on the lookout for the next installment of Rx for Distress for even more medical mayhem.

SPEAK UP! What do doctors, nurses, or other medical “professionals” do that makes your blood boil? Share your stories and opinions and they may be used in future posts!

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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

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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