Musings of a Medical Zebra

Archive for the ‘EDS Stuff’ Category

Taking a break — hopefully a short one

Wow…it has been ten days since I last posted. The right side of my rib cage is out of place. My osteopath/internist tried to fix it for me today, but it didn’t work. I’m having severe back pain. My sinus infection is acting up too. I’m on Levaquin for three weeks. I’ve been on it for a week now and the infection isn’t much better. I’m supposed to call my ENT doctor and see what he wants to do about it. The other problem right now is my hands. I have tendonditis in both hands. As a result of this, and my other issues right now, I’m going to take a break from typing for a little while. I hope to be back here soon. 🙂

E Day

Today I had an upper endoscopy. If you’ve read some of my previous posts, you already know that I have stomach problems.  I’m nauseous most of the time. I vomit off an on, for hours at a time, and my stomach hurts more often than not. My gastroenterologist decided to do another endoscopy. The last one I had was three years ago.

Today’s endoscopy yielded similar results.  My sliding hernia is still there, and my lower esophageal sphincter was still too floppy. The only thing different was the color of my stomach lining. This time it was red. My doctor took several biopsies of my stomach. He did that last time too. This time he biopsied my small intestine as well. The results of that stuff will come back in a few weeks. He expects everything to be fine. I seen him again on the 30th to discuss what to do next. He thinks the problem could be neurological, but said he might recommend another pH test — one that would tell him if I’m having reflux that’s not coming from my stomach (bile reflux). I see my internist on the 23rd to discuss my stomach as well. I suppose I’ll have more news at a later date.  For now, my stomach is unhappy about accepting food and I’m fairly nauesous, but otherwise okay.

The Decision

I have an important decision to make. A decision I’d like to make today. Better yet, I’d like to have someone else to make it for me — someone that knows the right answer. Unfortunately, neither of those things are going to happen. If you’ve spoken with me recently, you probably realize the decision to which I am referring. For those of you that don’t, I’m talking about my future — what I’m going to do with it.

I attended career counseling last year. It confirmed what I already knew — that I have a lot of interests. One of the possible careers we came up with — that I’m interested in and can physically do — is dietetics.

A lot has happened since my  career counseling sessions. My health has declined a bit since then. As it stands right now, it would be impossible for me to get to class each day.  My health status also tends to change for the worse very quickly. Perhaps I’ll be feeling well enough to attend classes when August rolls around. By October, a new ailment could pop up requiring that I leave school. Those reasons make me wonder if school is even worth attempting.

I have four months to decide, since it’s March right now. I started filling out my FAFSA (Free Application for Federal Student Aid) today. I plan to go through all the other motions as if I were starting in the fall — signing up for classes, etc. My hope is that the next few months will bring some positive health related changes. That would make the right decision more obvious — well, it would be helpful anyway. If things don’t improve, I’ll have to decide if I should start school anyway, postpone it, or forget the idea entirely.

I still wish I knew the answer now, or someone could make the decision for me. It looks like I’m just going to have to be patient and see what the next few months bring. I suppose I can do that. If there is one thing that EDS has taught/is teaching me, it’s how to be patient.

The Dish was wrong, again.

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

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

http://www.rarediseaseday.org/article/why-rare-disease-day

Please don’t stare, just ask

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

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?

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

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.

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.

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