Much has happened since I last updated this. I went to Cincinnati to see an EDS specialist; I have a cardiologist; I started aquatic therapy; I have a copy of Dragon Naturally Speaking; I made two pies; Danny mowed the yard at least once; we visited our families twice; I ordered a couple pairs of shoes from zappos.com; and we’re awaiting a new dining room table from Pottery Barn.
I think I am most excited about the new table. It will be so nice to have enough room to seat more than four people. I am certain that Martha would be pleased as well. 🙂
Next to the table, starting aquatic therapy is relatively high on the list of exciting things since my last post. I find it exciting because it’s an opportunity to get stronger, and relieve some pain in the process. Unfortunately, it’s going to take a fair amount of time before I feel some pain relief. While I’m excited about it on one hand, it’s hard for me to stay motivated on the other. This is unusual for me. Typically I’m highly motivated, even when the task doesn’t directly benefit me.
In this particular case, the task — therapy — seems to be having a negative effect. I realize this is likely temporary, but the pain in my back has increased to a level I’d call severe. I just want it to go away, as it is stressful and exhausting. Regardless of the pain it causes and/or my level of motivation, I will stick with it. I can’t be sure of its effectiveness otherwise. Wish me luck. 🙂
I was released from occupational therapy today. I wish I had been released because I made significant progress — or any progress for that matter. My hands are still quite painful — I’ve lost most of the muscle in them (atrophy). I have tendonitis in my wrists, forearms, and my right shoulder. I’m going to continue with my exercises. Hopefully, with time, I will make some progress.
In the next couple of days, my TENS will arrive. It should help me to deal with the pain — in my hands and elsewhere in my body. Yay!! 🙂
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.
Tomorrow kicks off EDS awareness month in Illinois. Hooray for awareness!
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. 🙂
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.
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.
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 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
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.
