Musings of a Medical Zebra

Archive for the ‘Misc. Thoughts on EDS & Chronic Illness’ Category

Happy St. Patrick’s Day!

I wrote the following post on the 17th, but am only now getting around to posting it. 🙂

I was diagnosed with Ehlers-Danlos syndrome on this day in 2005. Rather than dwell on the things that EDS has taken away, I am instead reminded of what EDS has given to me.  So today, I celebrate.

Holiday Dread

All EDSers that are at least mildly dreading the upcoming holidays please raise your hands. Is your hand raised? Mine is.

I enjoy visiting with family and friends…when I’m feeling up to it. Lately — if you’ve been following my blog you already know this — I haven’t felt up to it very often.   For the past few months, about the only thing I’ve felt like doing is sleep. When I’m not sleeping, I spend the bulk of my time fighting sleep or trying to keep my mind off of sleep.

I am exhausted. I am dizzy. I am in pain. All of these things indicate that it isn’t in my best interest to ride 2.5 hours one way to visit as many people as we can in 24 hours just because it’s a holiday.

Ideally,  folks would come up here once in awhile — maybe not on an actual holiday, but sometime near a  holiday. Unfortunately, it’s hard enough to get some folks up here yearly, let alone twice in one year. Maybe someday…I can always hope…

Time to start listening

Today it occurred to me that I push myself way too much. It’s imperative that I slow down and start saying no — no to myself and no to others.

When asked if I can do something, I generally say yes. When there is something that I feel needs to be done around the house, again, I generally say yes. And when there is something I want to do, I also say yes.  I expect my body to perform as it did several years ago — to do the types of things someone my age “should” be able to do. Even though fatigue and pain serve as constant reminders to pace myself or avoid a particular task entirely, I often do not listen.

I realize now that I have to stop being so stubborn and start listening to my body. That’s exactly what I’m going to do. It won’t be easy, but most things worth doing aren’t easy.

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

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.

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.

Suggestions: They’re a Good Thing

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.

Avatars by Sterling Adventures