Musings of a Medical Zebra

A Zebra Speaks

Archive for February, 2009

The Dish was wrong, again.

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February 27th, 2009 Posted 2:08 pm

As Rare Disease Day grows near, I am reminded of the chain of events that surrounded my diagnosis. Two years prior to being diagnosed with Ehlers-Danlos syndrome (EDS), I decided to substitute teach. As with most things, I wasn’t comfortable just jumping right in.  I did what I often do before starting something new — I bought a book about the topic.  The book turned out to be very helpful. I used it each time I taught, which was only a handful of times. It took an entire year before any of the schools called. At that point, I usually had some EDS related ailment that prevented me from working.

If you’ve read my previous posts, you know that I eventually researched my symptoms and diagnosed myself with EDS.  When I approached my doctor with some info about EDS, she had her nurse call a geneticist to set up an appointment. The geneticist’s office called a couple days later to ask me a few health related questions. That evening, I sat down to watch TV. I started reading Dish Network show descriptions, and I came across something that sounded interesting. It was a Discovery Health show called Medical Incredible; the episode had something to do with brain surgery.

When the show began, I was somewhat disappointed because it didn’t seem to be about brain surgery. As I spent more time watching, I realized it was broken up into segments. Each segment was about a different medical condition. I kept watching, hoping to see the brain surgery segment.

I never saw anything about brain surgery, but what I did see was much more interesting. It was one of the last segments, and it began with a guy doing contortionist-type stuff. The words,  “But some people are born with rubbery joints that pull out without warning,” caught my attention. This sounded like EDS. I thought to myself, “But how could they be talking about EDS? The Dish description didn’t say anything about that.” The Dish has been known to list incorrect descriptions, though. This turned out to be one of those cases.

I recall calling to my husband who was in the other room, and then rewinding to the beginning of the segment so I could record it. I watched it three or four times that night. The next day, I did an online search for the guy in the segment. I found his e-mail address and I decided to contact him. He responded and forwarded my address on to a woman involved with an EDS support group a few hours away. I spoke to her a few times via e-mail. Her name seemed very familiar to me, but I couldn’t figure out why. One day I happened to pick up my substitute teaching book. I glanced at the names of the authors. The mystery was solved.

For those that would like to watch, I’ll give you a link to the show.  I think the folks at Discovery Health did a decent job with the segment. Ideally, they would have focused more about EDS manifestations in general, rather than focusing heavily on joint dislocations.  Dislocations are an important (and painful) part of the condition. However, as anyone that suffers from the condition knows,  there’s much more to EDS than joint dislocations.  EDS is complicated. Since the show only devoted a few minutes to the condition — I think the segment is a little over five minutes — they didn’t really have time to talk very much about the other manifestations. I guess I should just be thankful that EDS was mentioned, and I am.

Here’s the link:

Ehlers-Danlos Syndrome – Medical Incredible Segment

Rare Disease Day 2009 – Feb. 28th

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February 24th, 2009 Posted 3:03 pm

Rare Disease Day is coming up; it’s this Saturday. For those of you not familiar with it, here’s a link:

Posted in EDS Stuff

Please don’t stare, just ask


February 18th, 2009 Posted 9:39 pm

As I mentioned in an earlier post, occasionally I ride around in a wheelchair.  This is usually because we’re doing something that requires a lot of walking. When I walk for more than 20-30 minutes on an average day, my knees hurt considerably. Sometimes I choose to just sit down and rest as often as I can.  Actually, I prefer to do this over riding in a wheelchair. I hate riding in wheelchairs.

We bought my wheelchair three or four years ago when I fractured my ankle. In general, crutches are a bad idea for people with EDS. In my case, they cause my shoulders to dislocate. They also cause my hands and wrists quite a bit of pain.  While I’m unable to push myself around in the chair very well because it also causes pain, it’s definitely an improvement over crutches. Power chairs are even better from a physical standpoint.

You’d think that I’d welcome both assistive devices, since they prevent injuries and unnecessary pain. Instead, I have disdain for them. Part of my problem has to do with accepting change. Just a few years ago everything was fine — I could walk as far as I wanted without pain, I had tons of energy, etc.  I realize things weren’t actually fine; it just seemed that way because I didn’t have any significant health issues.  Knowing that doesn’t really make it any better, though. Since my problems are fairly new to me, I’m still learning to accept that I need the chair from time to time.

Learning to accept the chair has been much easier than dealing with the stares I get while riding in the chair. I’m not exactly sure why people stare, but I think it could be related to my appearance. People are looking for something that’s obviously wrong. When they don’t see anything obviously wrong, it confuses them. They don’t ask why I need the chair because they probably think that would be rude, so they stare instead — forgetting that it’s rude to stare.

I think it baffles and irritates my husband (and friends) at times too. My husband notices the stares as much as I do, if not more often. A few years back — right after I fractured my ankle — we were in Walmart and I was riding in a power chair. I headed off to the grocery section of the store. My husband followed me. As we were moving along, he saw a middle-aged woman and her companion stop in their tracks. They just stood there for a bit and stared at me while I drove by.

Rather than staring, I wish people would just ask me why I need the chair. I would actually appreciate it. I can think of only one time that someone has asked me. It was an older lady, and the way she phrased the question was somewhat creative. She asked, “Did you just have surgery?”  I laughed to myself for a moment, and then went on to explain a little about EDS. I’m hoping she learned something that day, and that she’ll share what she learned. If more people would do that, perhaps fewer people would stare — thus making time spent in my chair more pleasurable.

Be Reasonable

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February 17th, 2009 Posted 12:12 pm

I hear complaints about doctors all the time. They usually come up when I mention how frequently I end up at my internist’s office. If you think your doctor is incompetent or isn’t the right doctor for you, that’s one thing. However, it seems like a lot of people don’t actually have real problems with their doctors. What they do have is unreasonable expectations.

I could write about these various unreasonable expectations at some length, but that’s not my plan. I actually just wanted to talk a little bit about the unreasonable expectation I hear most often: lateness.

I can’t even count the number of times I’ve heard people complain about their doctor being late for an appointment.  I’m not necessarily thrilled when my doctor walks in late.  However, I do understand that things don’t always go as planned in life — I think if anyone could possibly understand this, it would be me — so I’m willing to cut him some slack.  I know he’s doing what he can to maintain his schedule, while providing the best possible care for his patients. I also know that if he spends an extra ten minutes with other patients because they needed it, he’ll do the same for me if I need it — and I usually need it.

I think that’s a reasonable expectation. I also think it’s reasonable to expect my doctor to listen to me, treat me with respect, and do everything within his power to diagnose/treat my condition. Like me, my doctor is human. I don’t have answers to everything in my area of expertise, so I don’t expect my doctor to have all the answers in his area of expertise. I do have the ability to listen to someone when they come to me with a problem and treat the person with respect.  I also have the ability to ask others for their opinions, consult the internet, textbooks, etc., if I don’t have an answer. I expect nothing less from my doctor.

I encourage everyone reading this to do some reflection. Think about what expectations you have of your doctor, and whether or not they’re reasonable.  If they are, great. If they aren’t, come up with a new set of expectations and stick to them. I think you’ll be pleasantly surpsied by the outcome.

Where am I now?

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February 15th, 2009 Posted 6:34 pm

If you’ve read my first couple of posts — the stuff in the “Before Diagnosis” area — you might be wondering what’s going on with me now.  The following should help bring you up to speed. Keep in mind that not all of it is related to EDS.

Sinus Stuff

In February of 2007, I developed a sinus infection.  It was treated with antibiotics.  A couple months later, another infection popped up.  It was also treated with antibiotics.  The next month, I had yet another infection.  It was treated as well. In late August, my internist decided to send me to an ENT doctor. That doctor recommended endoscopic sinus surgery to straighten a deviated septum, remove some bone spurs, and carve out a wider path to my osteomeatal complex. (This sounds painful, but it wasn’t. It didn’t hurt at all,  even without pain medication.) I had the surgery in October. I can breathe better thanks to the surgery, but it didn’t help with the infections.

My internist eventually sent me to an immunologist, thinking an immune deficiency was to blame for my frequent infections. All the tests my immunologist ordered came back normal. My immunologist tried to treat the infection with antibiotics and then steroids — still no luck.

My internist told me that I should get a second opinion from another ENT doctor. The new ENT doctor saw the green drainage and put me on antibiotics for over a month. The infection went away for a couple months, and then came back. I still have an infection now, and I have flare-ups from time to time – probably every 2-3 months. My internist thinks there still could be something wrong with my immune system – something rare.  If the flare-ups continue, he wants me to call my immunologist and request that she do more testing.

Lung Stuff

In December 2007, I woke up in the middle of the night with severe pain in my chest. My doctor sent me to the ER. The ER doctor ordered a CT scan, among other things. The CT scan showed bilateral pulmonary nodules. (Nodules are small growths. They can be benign or malignant.)

I now have a pulmonologist. He suggested that I do chest CTs for an additional year – two years total. The scans are done every six months. The hope is that two year’s worth of scans should be enough to time to ensure that the nodules aren’t malignant.

Since I have had episodes of shortness of breath and chest pain, my pulmonologist ordered some pulmonary function tests.  I have since been diagnosed with asthma.

Stomach Stuff

I mentioned stomach problems in one of my first posts. Unfortunately my stomach has gotten worse. Despite taking Nexium twice a day and Carafate four times a day, I still have acid reflux and nausea. I’m nauseous just about every day at some point or another.  Once or twice a month, I wake up in the middle of the night with my heart racing.  I always head to the bathroom because I feel extremely nauseous. Sometimes I throw up for hours while sitting on the bathroom floor next to a trash can, too weak to even move.  Other times, I just sit in the bathroom – trembling from the sweat, waiting to throw up.  The day after these episodes, I usually feel too tired to do anything other than sleep.

I have a  gastroenterologist. He did an upper endoscopy three years ago and found a small hiatal hernia. He ordered a gastric emptying scan last April. The results of that test were normal. He ordered a 24 hour pH test last month. Even though the pH test was fine, it doesn’t mean I don’t have reflux. It just means that the test was performed on a day that I didn’t have reflux.  I wasn’t surprised by the results at all. The day of the test, I felt pretty good.  My doctor warned me that the results might be negative, so actually neither of us were surprised.  Since the pH study failed to yield any useful results, I had another endoscopy. It didn’t reveal anything significant; my stomach looked pretty much the same as it did four years ago.

Head Stuff

I used to suffer from migraines. They went away mid-way through college. Two years ago, I started to have headaches again. These headaches were different, though.  The new headaches were much more painful — probably the worst pain I had ever experienced.

It felt like someone was stabbing a hot poker into my eye and an ice pic under my cheekbone. At times, the pain would get so bad that I’d vomit. The pain would last at least an hour, and then return every half hour or so for several days. Last year, they became more frequent. My internist diagnosed me with cluster headaches and prescribed high flow oxygen. I now have an oxygen concentrator. It helps tremendously.  (I’ll provide some info about cluster headaches at the end of this.)

Skin Stuff

My skin is more fragile than it was at the time of my diagnosis. If I am not careful about how I open up a bottle of water, for instance, my skin will tear. I also don’t heal as well as I used to. If I get a small scratch, it can take a few weeks to heal. When it does heal, it sometimes scars.

Joint Stuff

I have osteoarthritis in some joints and tendonitis pretty much everywhere. I also have dislocations daily. My hands seem to cause me the most problems. On my best days, they hurt constantly and I have to limit what I do with them — typing, kitchen tasks, etc. On my worst days, they’re pretty much useless. My knees and hips also cause me significant pain.  On days when we know we’re going to be walking a lot, say we go to the zoo, we’ll bring my wheelchair along. I still feel weird riding in it — mainly because of all the stares I tend to get — but it makes our trips much more enjoyable.

Currently, I have a torn rotator cuff.  This is likely the result of a shoulder dislocation that occurred while sleeping. I also have a fractured tailbone. I slipped on some ice back in December. I am still in a fair amount of pain from the injury. I cannot sit on my tailbone, so I can’t drive. I’m hoping I’ll improve in a couple months, so I can get back to driving again.

In addition to the injuries listed above, I have costochondritis and the right side of my ribcage is shifted slightly backwards. Occasionally, my chest will pop. I cannot only feel it, but I can hear it. Usually the popping occurs when I turn over in bed. Occasionally, it will occur while standing. The pain is severe enough, that if it happens while standing, I have to sit down until the pain subsides.

Other Stuff

I also suffer from daily fatigue, which can be extreme at times.

In 2003, I developed lesions on my tongue. My dentist diagnosed me with geographic tongue. Since then, the lesions have gotten much worse. Most days, my tongue us sore.  Occasionally, it’s actually painful and bleeds.  The majority of my tongue is covered with lesions on a typical day. My internist wonders if my tongue issues are related to an immune disorder.

ABC News Article About Cluster Headaches

Doctors: Just get a new one

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February 9th, 2009 Posted 10:16 am

People frequently tell me that they hate going to the doctor. Some of them don’t like the inconvenience, some just don’t like their doctor for whatever reason, and others associate going to the doctor with a bad experience. I can understand the first and the third reason, but not the second one. If you don’t like your doctor, why not ask around for referrals so you can try a different one?

If you weren’t happy with the work a mechanic did on your car, would you go back to that mechanic every time your car broke down? My guess is that you wouldn’t. The first time you encountered a problem, you’d probably voice your concerns, and the mechanic would make the situation right.  If you went back a second or third time and had similar problems, you’d still voice your concerns to correct the situation. Would you give him/her a forth, fifth, or sixth chance?  I doubt it.

When it comes to providing a service, is a doctor any different than a mechanic? Not really. Like a mechanic, the doctor is working for you. If you aren’t happy with their work,  speak up. Give the doctor a couple chances to address your concerns.  If you still aren’t happy with the results,  it’s probably time to move on.

You’re sick? You look so good, though.


February 7th, 2009 Posted 8:33 pm

When people find out about my medical condition, they often say, “But you look so good. ” I’m never sure what they mean by that, but I assume part of it has to do with confusion.  They don’t understand how someone that looks good can be sick because they’re focused on visual cues — whether the person appears pale, tired, etc. Unfortunately, some people get so focused on visual cues that they think their loved one is exaggerating about their condition. “Well, if I can’t see it, then it must not exist.”

I have been fortunate enough to have friends/family that are understanding, and that realize I’m not just a whiner. Although they can’t see my pain, fatigue, etc., they don’t question its existence. They are good about asking how I feel, and making accommodations when they can. If I tell them I’m too tired to ride an hour to see them, for example, they don’t push me to do it anyway.  They’ll come to me instead.  If I tell them that my knees hurt too much to go shopping, they don’t suggest that I pop some pills and deal with it. They offer to push me in a wheelchair or move the shopping trip to another date. They do this, in part, because they know that how I look (or  sound on the phone) does not reflect how I feel. For that, I am very fortunate.

Suggestions: They’re a Good Thing

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February 6th, 2009 Posted 12:19 pm

When people hear about my various ailments, often they try to help by offering suggestions that have worked for a similar problem they’ve had or someone they know has had. I think Martha Stewart would agree with me when I say that suggestions are “a good thing. ” (Yay! I’ve mentioned Martha on here twice now.)

I welcome suggestions — to me they show that people care — and I also see them as an opportunity to educate people about Ehlers-Danlos syndrome (EDS).  I do my best to explain EDS in a concise, easy to understand way. I like to teach, and I like to think that I’m good at it, but sometimes I wonder. It seems as though people just don’t get that their simple suggestions won’t alleviate a complex problem, even after I explain why their suggestions won’t work.

Just because going to the chiropractor fixed Aunt Ida’s subluxed ribs, it doesn’t mean it will help mine. If I went to a chiropractor every time I had a subluxed or dislocated joint — actually I wouldn’t go to a chiropractor  — I’d be there every day, several times a day. I might as well set up a cot in the waiting area so I could be there as each event occurs. Maybe if I did that, I could get a deal on the “natural remedies” and the other miscellaneous,  non-FDA approved stuff  they sell.

On the same note — not chiropractors, I’m talking about suggestions again — I love hearing about how Uncle Herbert once used St. Ives Collagen Elastin to soften his 60 year-old skin. Just because the product has “collagen” in the name and my collagen is fragile (and I often feel 60 years old), it doesn’t mean that using a product made of collagen will make my skin less fragile.

Like I said before, I get that people are trying to help. It’s only natural to want to help someone solve a problem  — it’s human.  If something worked for you or someone you know, it feels good to share it. Maybe someday someone will suggest something that isn’t contraindicated with my condition — chiropractors — or something that might actually work.  Until that time, I’ll leave the suggestions up to my doctors and I’ll continue my attempts at educating  people about EDS.

Clues Continued

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February 4th, 2009 Posted 2:13 pm

Physical therapy eventually helped me to become almost pain free in my left hip. I felt pretty good for several months — through the Spring or Summer of 2004.  My relief turned out to be short-lived.

Once Fall rolled around, my knees started to hurt. Since the pain was in both of my knees, my doctor decided to test me for rheumatoid arthritis. The test came back negative, and I was sent to physical therapy again.  The therapist diagnosed me with Iliotibial Band syndrome.  Therapy was beneficial, but I wasn’t anywhere near pain free at the time of my release.  I simply accepted that I was just going to have to live with knee pain. I relied on Ibuprofen a few times a day, several days out of the week.

Not long after my release from therapy, I experienced significant pain in my wrists and hands. It was late November and I decided to make some gingerbread cookies.  I didn’t have a stand mixer at the time, so I stirred the dough by hand. If you’ve ever made gingerbread cookies, you already know the dough is very thick. If you haven’t, well now you know.

Two days after stirring and rolling the dough,  my fingers hurt so much that I could barely bend them, and my wrists felt broken.  I knew the pain was caused by stirring the gingerbread. I could see having a little bit of soreness, but not the degree of pain I was experiencing. As the days passed, my pain improved. It never completely went away, though.

I decided against calling my doctor this time around.  I  did some research instead. I had a hunch that all my pain was related somehow. I did various google searches in attempt to find a name for my condition with no luck. A week  or two passed, and I thought back to what the physical therapist said — the hypermobility comment.  I put that term into google, along with joint pain, and it came up with a condition called “hypermoblity syndrome.” It sounded close, but didn’t explain everything. I wasn’t sure if that meant I had one condition, or two conditions — hypermobility syndrome and something else. I did more searching and managed to come across some articles about Ehlers-Danlos syndrome (EDS). The more I read about EDS, the more I identified with it.

It took at least a month to muster the courage to print off some info about EDS and approach my doctor with it. I was a little hesitant about suggesting the condition because I didn’t want my doctor to feel insulted. I know that some doctors don’t appreciate it when a patient brings in information about a condition they think they have.

After figuring out the best way to approach her, I made an appointment. The discussion went much better than I expected.  She made an appointment with a geneticist. A month or two later, I was offically diagnosed with EDS.

The First Clues

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February 3rd, 2009 Posted 9:13 am

I mentioned in my second post that I was diagnosed with Ehlers-Danlos syndrome (EDS) in March of 2005.  My symptoms, however, began many years prior. My first experiences with EDS occurred as a teenager. My left hip would occasionally dislocate when I’d bend over to pick something up and my shoulders would pop out when doing large arm circles in PE. At the time, I didn’t think anything of it. The dislocations weren’t painful, so they didn’t seem worth mentioning. Actually, I do recall one of the dislocations being painful. It occurred during my junior year of high school. I was lying on the couch studying, as I often did. My right arm was propped up and my head was resting on my right hand. All of a sudden, I felt my jaw slip. Realizing that something had just gone horribly wrong, I sat up and wiggled my jaw around. I couldn’t open it very far and the right side hung farther down than the left. I decided not to tell anyone about this experience for quite some time — actually it turned out to be a year — because I was more concerned about how my doctor would get my jaw back into place than I was about the pain. I kept picturing a large man yanking violently on my chin until I heard and felt a loud popping noise (and immense pain). It seemed like a better idea just to keep quiet for awhile.

That was the worst dislocation I suffered until Oct. of 2003. At some point during that month, I remember falling asleep on the couch. Normally, I sleep with a pillow between my knees. That night I forgot about the pillow and woke up with a dislocated hip. In retrospect, I know it was a dislocated hip. At the time, I wasn’t sure what happened. I just knew it was very painful. There was a constant burning sensation in my hip that lasted for several days. When the intensity of the burning decreased, I thought my hip was going to be okay. I didn’t see a need to visit my doctor. As the weeks went by, the pain lingered. I developed a noticeable limp, and my husband insisted that I buy and use a cane. I bought a cane that weekend and called my doctor a couple days later. I was diagnosed with trochanteric bursitis. I was given a prednisone injection and sent home with some pain killers/anti-inflammatories, Relafen. My doctor said that I’d need to get another injection if the pain in my hip didn’t go away in three weeks.

I left the doctor’s office and headed home. An hour or so later, it became difficult to walk on my left leg – the leg where I had been given the injection. My left knee didn’t seem to want to bend, and the pain in my hip had increased significantly. I relied on my cane heavily for about a week. I continued to take the Relafen for three weeks. I called my doctor because the pain wasn’t getting any better and because I had developed a new problem – I was able to eat less and I was nauseous most of the time. After looking around online, I was convinced I had gastritis –- stomach lining inflammation.

At my second doctor’s visit, I was supposed to get another prednisone injection. When I told my doctor about my new symptoms, she decided against the injection. She thought I had an ulcer and didn’t want to make it worse by giving me another prednisone injection. She sent me to the hospital for an upper GI and I found out that I had gastritis. Six months later and 25+ pounds lighter –- I was in so much pain that I could eat very little — my stomach had finally healed.

During the healing process, I was sent to physical therapy for my hip. My first visit with the physical therapist made quite an impression on me. As the therapist was evaluating me, she noticed that my joints were extremely flexible. This was something I had always known. The interesting thing to me was the term she used: hypermobility. I kept the term in the back of my mind, thinking it might useful somehow. Several months later, my instincts turned out to be correct.

To be continued…