I've been poofed for a while, nearly two months. I'm sorry!
In my last few posts, I mentioned having problems with Savella. Well, the doctor switched me off that and onto Lyrica, which I am loving. My pain isn't *all* gone, but it's not as bad as it was. And I know that for sure, because I got to compare non-Lyrica me and Lyrica me a little while ago. We couldn't afford my Lyrica refill on time. About 24 hours after my last dose, my body realized I wasn't going to put more medicine into it. I had nausea and diarrhea, but that wasn't the worst of it. The pain was back, and I thought I didn't have a point where I was sobbing in pain...I found out that yes, there is a point where I will be sobbing in pain. Well, pain, and embarrassment, and anger. I HATE not being able to do things. I could hardly move for the two days between my body realizing no more medicine was coming and me getting the refill. It was horrible.
I got signed up for a summer orientation conference at the college I plan to attend this fall. It's going to be difficult, but I'll be damned if I'll let hurting keep me from doing what I want. I have to work around a lot, but I'll make it. On that note, my meds are going to the conference with me-both because it's a two-day conference and there won't be time to drive home and take them, and because I'll need them...a lot of it will be "Hey, welcome to your new campus, let me show you our several-hundred-acre area while we all go around on foot!" and I expect I'll be in a lot of pain before it's over. The dorm I'm hoping to get into is in the center of campus, only a short walk from the main class buildings, the main library, and the aquatic center (because water exercise is one thing EDS'ers can do without messing themselves up even more). Hopefully that will compensate. I'm crossing my fingers to get an electric scooter (there are some for 199 dollars at Walmart that hold up to 170 pounds...I'm 140, dripping wet, so 170 would be plenty) but if I don't, I'll figure out how to manage, somehow.
I'm sleeping in my closet now, for a lot of reasons.
My cat would knock all of my bed things onto the floor and then pee on the bed anytime I left the room. As you can imagine, I wasn't real happy with that.
I still wet the bed. The bladder has connective tissue. When it gets full, instead of giving me a little notice ("hey, dummy, you need to use the restroom, get up!") it just leaks. It does that other times, too, while I'm awake, or tries to, so I keep near a restroom at all times. I have a plastic-backed mat that keeps me from ruining the mattress, but I am a twist-and-turn sleeper, and I'd often wake up with the mat shoved off to one side and useless.
The hard floor actually helps, confusingly. I can't tell you how, cause I don't know either, but it helps. I think the lack of springs is a good part of it, and the support for my entire body.
It's somewhere I can go to, turn off the light, and have absolute darkness and silence, something that really helps when I'm in pain. My body has enough to cope with, surviving pain...seeing and hearing things sends it into overload.
Monday, April 23, 2012
Wednesday, February 29, 2012
Feb 28, 2012
I haven't been able to internet very well recently-my wrists and fingers are killing me, so I've been reduced to the stupid touchscreen tablet computer thing. I hate it, and the only way to type on it is with a couple fingers poking at the virtual keyboard. Not a useful method for typing out a blog post.
The past few days I've been trying to get accustomed to that Savella. I put in a call to my doc and hopefully he'll take me off it. I'm in more pain than I was before I started it, I've had a headache (varying between "barely noticeable as a twinge" and "go sit in the bathroom with a locked door and the lights off because light and noise make me want to cut off my own head to make the hurting stop") and pretty bad nausea, plus chest pain, heart flutters (I swear it has a name for that but I cannot remember it AT ALL! Ugh..........OH!! Duh, palpitations! Heart palpitations!), and a couple panic attacks which are not fun. I was shaking on the bathroom floor crying from sheer terror. At this point I'm thinking of just staying off long-term pain meds in general. I'm only 19 and my daily routine is not that strenuous. My pain tolerance ends up being really high, too. On the zero to ten pain scale, my zero is about a four or five on a normal person's scale, but because I've lived with it so long, it's become my baseline. I'm used to that low level of pain that's always there, and I know how it spikes, etc. Basically it tells me how long I can push my boundaries. If I'm walking around, maybe my right knee is twinging a bit more today or my left shoulder is feeling particularly sore, then I know to be a little careful with those areas. If I have no pain, then those cues are gone.
Went to the big city for an Echocardiogram, which is an ultrasound of the heart. Ever seen a pregnant woman get an ultrasound? It's a lot like that, but up a little ways. The goopy jelly stuff goes around the chest instead, and there's little stick-on electrodes so the machine can hear the heart beating. I found it funny, because I had one done before, in early November, and the nurse just had me strip to the waist and let me cover with a towel, then moved the towel aside so she could move the ultrasound wand around. This one, they just had me lift my shirt and unhook my bra, and made sure I was covered with a paper smock the entire time...are liability concerns really that bad? It's not like I'm gonna sue them. I'm comfy with my body, in that no, I'm not gonna walk around nude in front of my family, but I'm not uncomfortable being topless around a doctor that I'm probably never gonna see again. It's not like I'm gonna see her at walmart and think "Oh, crud, that lady's seen my boobs". And it's not like she's gonna remember. That's her job. She sees plenty of boobs, and mine aren't that spectacular. I just don't get the logic, but this is really off-topic.
Walked around a Sam's Club for a while and ended up pushing the cart by time we got halfway around, just so I could lean on it. My knees were trying to hyperextend again, both of them now, and I didn't feel like going out to the car, getting my pain-medication ointment, and waiting an hour for it to kick in before I went back in. Besides, even if I didn't feel the pain, it still does bad stuff to the ligaments and such. I keep finding reasons to shy away from pain meds...my family usually has to shove them at me before I'll take them. I don't think I have a limit of pain that I can't stand, where I'm either fainting or sobbing from sheer pain, and I don't like just medicating everything into behaving. I expect that attitude will change, because I've got a long, long life of this to look forward to, but right now it's still something I'm really uncomfortable with.
A quick glimpse of the days I wasn't here-
Feb 24th
My mom had a long day at work and I had to stay home to watch my brother (he's 17, by the way...) and try to fix supper.
As you can imagine, supper didn't happen. When mom called after work I asked her to get us both something to eat before she came home, because I just couldn't manage it. Cooking involves carrying, standing, stirring, pouring...lots of stuff using wrists, fingers, shoulder, hips, knees...pretty much all the joints, and they were simultaneously rebelling.
Feb 25th
The 24th wiped me out...I slept until about 6:30 at night, and it was lovely to just lie down and not move. My mom was working again and my dad, bless him, took my brother out to get some groceries and snacks, and just to drive around (we're still relatively new to this area and it's beautiful here), so I got to rest.
Feb 26th
My mom was off this day and my dad and brother went fishing. Mom and I were both asleep all day-I've been going between our couch and my brother's futon for sleeping, because the support of the arm and back is really helpful so I can sort of brace myself there. A lot of people with Ehlers-Danlos Syndrome sleep with dozens of pillows, wedged in around them so tightly that they can't move, because if they move they know something will dislocate in their sleep. Mom is where my EDS came from, it seems like. She can do a few of the bendy tricks, and we've traced symptoms back to her mother and grandmother. Unfortunately, she actually does work, and it's really painful for her.
Feb 27th
I found out a library nearby is going to be hiring for a part-time assistant in their teen area! My goal, in terms of a dream job/career, is to work in a library. In light of my mobility issues, I've spent a while reviewing the usual duties of a librarian and assessing whether I could do that. For example, pushing a bookcart around would mean I had something to lean on. There are very rarely times in a library when one absolutely has to lift a very heavy item around-most books and library things are relatively light, so as long as I'm not standing dangling a single item from one arm for a half hour, then I should be fine in terms of arm problems. If I have a wave of dizziness, then I can take a moment and crouch down-that's what usually helps with my dizzy spells, since the reason they happen is that my heart isn't beating hard enough to force blood to my head. If I crouch, then it has less gravity to struggle against. I do know that if it's the sort of library where the checkout people are all standing at all times, then I can't do that. Otherwise, I can do most of the things that would be required. It's funny how things I decided as a child have a new light now...I knew I wanted to be a librarian, and I was never going to have children. Now I find out that working in a library is something I could actually manage, and that having children could be dangerous for me and the child. Coincidence is strange sometimes.
Today is February 29th, leap day, and coincidentally, Rare Diseases Day. Ehlers-Danlos Syndrome affects one in 5-10,000 people. This is a video made by a member of a group for teens with Ehlers-Danlos, and does a pretty good job both of explaining what EDS is, and that those with it are normal and just want to be accepted. Every picture on there is a person with Ehlers-Danlos.
http://www.youtube.com/watch?feature=player_embedded&v=zOJBzt4lu34
The past few days I've been trying to get accustomed to that Savella. I put in a call to my doc and hopefully he'll take me off it. I'm in more pain than I was before I started it, I've had a headache (varying between "barely noticeable as a twinge" and "go sit in the bathroom with a locked door and the lights off because light and noise make me want to cut off my own head to make the hurting stop") and pretty bad nausea, plus chest pain, heart flutters (I swear it has a name for that but I cannot remember it AT ALL! Ugh..........OH!! Duh, palpitations! Heart palpitations!), and a couple panic attacks which are not fun. I was shaking on the bathroom floor crying from sheer terror. At this point I'm thinking of just staying off long-term pain meds in general. I'm only 19 and my daily routine is not that strenuous. My pain tolerance ends up being really high, too. On the zero to ten pain scale, my zero is about a four or five on a normal person's scale, but because I've lived with it so long, it's become my baseline. I'm used to that low level of pain that's always there, and I know how it spikes, etc. Basically it tells me how long I can push my boundaries. If I'm walking around, maybe my right knee is twinging a bit more today or my left shoulder is feeling particularly sore, then I know to be a little careful with those areas. If I have no pain, then those cues are gone.
Went to the big city for an Echocardiogram, which is an ultrasound of the heart. Ever seen a pregnant woman get an ultrasound? It's a lot like that, but up a little ways. The goopy jelly stuff goes around the chest instead, and there's little stick-on electrodes so the machine can hear the heart beating. I found it funny, because I had one done before, in early November, and the nurse just had me strip to the waist and let me cover with a towel, then moved the towel aside so she could move the ultrasound wand around. This one, they just had me lift my shirt and unhook my bra, and made sure I was covered with a paper smock the entire time...are liability concerns really that bad? It's not like I'm gonna sue them. I'm comfy with my body, in that no, I'm not gonna walk around nude in front of my family, but I'm not uncomfortable being topless around a doctor that I'm probably never gonna see again. It's not like I'm gonna see her at walmart and think "Oh, crud, that lady's seen my boobs". And it's not like she's gonna remember. That's her job. She sees plenty of boobs, and mine aren't that spectacular. I just don't get the logic, but this is really off-topic.
Walked around a Sam's Club for a while and ended up pushing the cart by time we got halfway around, just so I could lean on it. My knees were trying to hyperextend again, both of them now, and I didn't feel like going out to the car, getting my pain-medication ointment, and waiting an hour for it to kick in before I went back in. Besides, even if I didn't feel the pain, it still does bad stuff to the ligaments and such. I keep finding reasons to shy away from pain meds...my family usually has to shove them at me before I'll take them. I don't think I have a limit of pain that I can't stand, where I'm either fainting or sobbing from sheer pain, and I don't like just medicating everything into behaving. I expect that attitude will change, because I've got a long, long life of this to look forward to, but right now it's still something I'm really uncomfortable with.
A quick glimpse of the days I wasn't here-
Feb 24th
My mom had a long day at work and I had to stay home to watch my brother (he's 17, by the way...) and try to fix supper.
As you can imagine, supper didn't happen. When mom called after work I asked her to get us both something to eat before she came home, because I just couldn't manage it. Cooking involves carrying, standing, stirring, pouring...lots of stuff using wrists, fingers, shoulder, hips, knees...pretty much all the joints, and they were simultaneously rebelling.
Feb 25th
The 24th wiped me out...I slept until about 6:30 at night, and it was lovely to just lie down and not move. My mom was working again and my dad, bless him, took my brother out to get some groceries and snacks, and just to drive around (we're still relatively new to this area and it's beautiful here), so I got to rest.
Feb 26th
My mom was off this day and my dad and brother went fishing. Mom and I were both asleep all day-I've been going between our couch and my brother's futon for sleeping, because the support of the arm and back is really helpful so I can sort of brace myself there. A lot of people with Ehlers-Danlos Syndrome sleep with dozens of pillows, wedged in around them so tightly that they can't move, because if they move they know something will dislocate in their sleep. Mom is where my EDS came from, it seems like. She can do a few of the bendy tricks, and we've traced symptoms back to her mother and grandmother. Unfortunately, she actually does work, and it's really painful for her.
Feb 27th
I found out a library nearby is going to be hiring for a part-time assistant in their teen area! My goal, in terms of a dream job/career, is to work in a library. In light of my mobility issues, I've spent a while reviewing the usual duties of a librarian and assessing whether I could do that. For example, pushing a bookcart around would mean I had something to lean on. There are very rarely times in a library when one absolutely has to lift a very heavy item around-most books and library things are relatively light, so as long as I'm not standing dangling a single item from one arm for a half hour, then I should be fine in terms of arm problems. If I have a wave of dizziness, then I can take a moment and crouch down-that's what usually helps with my dizzy spells, since the reason they happen is that my heart isn't beating hard enough to force blood to my head. If I crouch, then it has less gravity to struggle against. I do know that if it's the sort of library where the checkout people are all standing at all times, then I can't do that. Otherwise, I can do most of the things that would be required. It's funny how things I decided as a child have a new light now...I knew I wanted to be a librarian, and I was never going to have children. Now I find out that working in a library is something I could actually manage, and that having children could be dangerous for me and the child. Coincidence is strange sometimes.
Today is February 29th, leap day, and coincidentally, Rare Diseases Day. Ehlers-Danlos Syndrome affects one in 5-10,000 people. This is a video made by a member of a group for teens with Ehlers-Danlos, and does a pretty good job both of explaining what EDS is, and that those with it are normal and just want to be accepted. Every picture on there is a person with Ehlers-Danlos.
http://www.youtube.com/watch?feature=player_embedded&v=zOJBzt4lu34
Friday, February 24, 2012
February 23rd, 2012
Got up to take my medication this morning-I take a combined alpha and beta blocker (heart medication). Back in November of last year, an echocardiogram showed that I have a low ejection fraction...the average heart fills with blood and when the muscle contracts, it pumps out 55-70% of the blood it holds, then refills and repeats. Mine is pumping 35-40%, and to make up for that, my heart is trying to beat faster. The medicine slows that down a little, so hopefully that helps. Basically, I have a weak heart muscle.
Went to walmart with my mom again. Even something as simple as going to walmart ends up being really painful. I was very close to sitting down on the floor a few times-it hurts to walk, but it hurts more to stand in one place, and if I sit and then get up, it hurts worse because my knees got used to no pressure, and now they're being expected to support me again. We were there for about 45 minutes or so and it's not as though we went across the entire store-just getting some groceries for supper. It sucks to limp, especially when I look healthy, because I get looked at. I really detest being the center of attention, and when I look like a healthy, average 17-18 year old (I'm 19, but young-looking for my age) and walk with a limp and tears in my eyes, I either get outright stares or people studiously avoiding looking. I did manage to play with a bouncy ball though-it said it was a "Super Ball" that could bounce up to 75 feet! Most bouncy balls over-advertise, so I lifted it to about head height (around 5 foot, 4 inches) and threw it at the ground. It bounced probably seven or eight feet in the air and I very quickly caught it and put it back. Most bouncy balls don't do that! Haha, definitely not false advertising there. By the time we left the store, I was near crying from pain, though.
My pain management doctor prescribed a concoction that is basically a cream made of about seven painkillers-two muscle relaxers, an anti-inflammatory, a topical anesthetic...and some others I'm forgetting. It's powerful stuff-it gets made up in a laboratory and fedexed to me. Yesterday was the first time I tried it...I had supper and slathered some on both knees around 10pm. They were less achy by around 11, but the full effect didn't hit until around midnight, when I assume the muscle relaxers kicked in. Boy, was I relaxed! My right knee actually hyperextended (the knee went backwards) when I was walking, and I didn't feel a thing...I realized it had hyperextended, but normally when that happens, I fall down or at least stop to hold onto something until the pain passes. This time I just made a mental note to keep a small bend in that leg and kept going. I definitely like that one.
I was also prescribed a medication called "Savella"...it's a combination chronic pain drug and anti-depressant, because I mentioned to the doctor that I do have occasional brushes with depression. Just brushes, and only when I actually think about my situation, and the future (for example...if I am still using this topical cream and apply for a job that wants me to take a drug test, I'll show up as having a bunch of medications in my system...in the area I live in, drug abuse is rampant, and just because I have a prescription, that doesn't mean I'm not abusing it...there's a good likelihood this will make getting a job very difficult) but still. I'm not hearing the greatest things about it, though. It seems like it's great for relieving pain, but the side effects are hard to live with. Already, from taking my first dose, I'm noticing a headache (that started about an hour after I took the medication, and that had no logical reason for being there) and really, really bad dry mouth and dehydration (which is a concern, because secondary to EDS, I have POTS, and to keep from blacking out, I need my blood pressure up-that way when it drops, it doesn't drop to an unsafe level. Dehydration increases the symptoms of POTS, the dizziness and near-fainting) again, with no logical reason. I'm going to go through my month of medication, or at least try to, but I'm not sure if it'll work or if I'll need to switch medicines.
I dislike being a burden, and so far I can still do laundry, so I keep my family in clean laundry. When I gathered it up today, I leaned over so that my back was horizontal and just dangled my arms beneath my body, clutching the clothing. It keeps my knees bent and I seem to have fewer problems with my shoulders...very possibly the difference in whether I carry it standing up or crouched over is just the placebo effect (I imagine it'll work, and it does) but right now I take what I can get, even if it's just placebo effect. After the cream kicked in, I had my dad do the load up that I was going to do, because the muscle relaxers knocked me loopy. It's a good thing I don't drink and don't plan to, because if this is what I'm like on a couple different muscle relaxers, I expect I would be possibly the most embarrassing drunk ever, and the last thing I need is a sober friend with a video camera.
Overall, better than it could have been. The weather was lovely today, I found out the cream works very well and the new medication is still a little iffy, and I worked on getting over my pill issues (I dislike swallowing pills, a lot) and did pretty well. It helps that my beginner pills for Savella are tiny. Like, really really tiny. I love them and hope that if this medicine seems to be working that I can convince my doctor to prescribe me a month's worth of the tiny pills. They're 12.5 milligrams each, and by the end of this medicine pack I'll be on 50 milligrams morning and night...it'd mean taking 8 a day, 4 in the morning and 4 in the evening, but I don't care. To me, it's worth it (or at least, if the medicine works it is).
Went to walmart with my mom again. Even something as simple as going to walmart ends up being really painful. I was very close to sitting down on the floor a few times-it hurts to walk, but it hurts more to stand in one place, and if I sit and then get up, it hurts worse because my knees got used to no pressure, and now they're being expected to support me again. We were there for about 45 minutes or so and it's not as though we went across the entire store-just getting some groceries for supper. It sucks to limp, especially when I look healthy, because I get looked at. I really detest being the center of attention, and when I look like a healthy, average 17-18 year old (I'm 19, but young-looking for my age) and walk with a limp and tears in my eyes, I either get outright stares or people studiously avoiding looking. I did manage to play with a bouncy ball though-it said it was a "Super Ball" that could bounce up to 75 feet! Most bouncy balls over-advertise, so I lifted it to about head height (around 5 foot, 4 inches) and threw it at the ground. It bounced probably seven or eight feet in the air and I very quickly caught it and put it back. Most bouncy balls don't do that! Haha, definitely not false advertising there. By the time we left the store, I was near crying from pain, though.
My pain management doctor prescribed a concoction that is basically a cream made of about seven painkillers-two muscle relaxers, an anti-inflammatory, a topical anesthetic...and some others I'm forgetting. It's powerful stuff-it gets made up in a laboratory and fedexed to me. Yesterday was the first time I tried it...I had supper and slathered some on both knees around 10pm. They were less achy by around 11, but the full effect didn't hit until around midnight, when I assume the muscle relaxers kicked in. Boy, was I relaxed! My right knee actually hyperextended (the knee went backwards) when I was walking, and I didn't feel a thing...I realized it had hyperextended, but normally when that happens, I fall down or at least stop to hold onto something until the pain passes. This time I just made a mental note to keep a small bend in that leg and kept going. I definitely like that one.
I was also prescribed a medication called "Savella"...it's a combination chronic pain drug and anti-depressant, because I mentioned to the doctor that I do have occasional brushes with depression. Just brushes, and only when I actually think about my situation, and the future (for example...if I am still using this topical cream and apply for a job that wants me to take a drug test, I'll show up as having a bunch of medications in my system...in the area I live in, drug abuse is rampant, and just because I have a prescription, that doesn't mean I'm not abusing it...there's a good likelihood this will make getting a job very difficult) but still. I'm not hearing the greatest things about it, though. It seems like it's great for relieving pain, but the side effects are hard to live with. Already, from taking my first dose, I'm noticing a headache (that started about an hour after I took the medication, and that had no logical reason for being there) and really, really bad dry mouth and dehydration (which is a concern, because secondary to EDS, I have POTS, and to keep from blacking out, I need my blood pressure up-that way when it drops, it doesn't drop to an unsafe level. Dehydration increases the symptoms of POTS, the dizziness and near-fainting) again, with no logical reason. I'm going to go through my month of medication, or at least try to, but I'm not sure if it'll work or if I'll need to switch medicines.
I dislike being a burden, and so far I can still do laundry, so I keep my family in clean laundry. When I gathered it up today, I leaned over so that my back was horizontal and just dangled my arms beneath my body, clutching the clothing. It keeps my knees bent and I seem to have fewer problems with my shoulders...very possibly the difference in whether I carry it standing up or crouched over is just the placebo effect (I imagine it'll work, and it does) but right now I take what I can get, even if it's just placebo effect. After the cream kicked in, I had my dad do the load up that I was going to do, because the muscle relaxers knocked me loopy. It's a good thing I don't drink and don't plan to, because if this is what I'm like on a couple different muscle relaxers, I expect I would be possibly the most embarrassing drunk ever, and the last thing I need is a sober friend with a video camera.
Overall, better than it could have been. The weather was lovely today, I found out the cream works very well and the new medication is still a little iffy, and I worked on getting over my pill issues (I dislike swallowing pills, a lot) and did pretty well. It helps that my beginner pills for Savella are tiny. Like, really really tiny. I love them and hope that if this medicine seems to be working that I can convince my doctor to prescribe me a month's worth of the tiny pills. They're 12.5 milligrams each, and by the end of this medicine pack I'll be on 50 milligrams morning and night...it'd mean taking 8 a day, 4 in the morning and 4 in the evening, but I don't care. To me, it's worth it (or at least, if the medicine works it is).
Thursday, February 23, 2012
Begin at the beginning
I was always told when telling something that I should begin at the beginning. So I shall.
All this started when I was about 12. I was jumping on a trampoline with some friends and playing Follow the Leader-one person would do a trick and the other two tried to copy it. My tricks were dinky, easy stuff almost anyone could do, so probably on my third turn or so, they told me not to do something wimpy this time. I, of course, said that I wouldn't, and bounced, stalling for time. Then it hit me! I would come down from a jump on my right leg and bounce back up, going into a flip. Instead, I landed on my right leg, and my knee buckled backwards. It's not supposed to do that. I don't remember a lot of this...I felt it go backwards and incredibly intense pain. I crumpled, bawling like a baby and clutching my leg in agony. My friends were very concerned-one was a boy a year younger than me, the other a girl a couple months older than me. I barely managed to tell the boy that he needed to go get his older sister-I knew I couldn't walk, and she was the only one who could carry me. So she came running over with him (I kind of wonder, now, what he told her. "Jessica got hurt! She's crying!" or just "come quick!!") and got me into their house. Me and the other girl had slept over the night before and our moms hadn't come to pick us up.
I faked being okay very well-I figured it was just sore, and my mom would want to take me to a doctor, which I was sure I didn't need. Also, I wanted to sleep over that night and she wouldn't let me if I had gotten seriously hurt. So I said it was nothing, and kept saying that for a couple of days until the pain became too much and I admitted to her that it was worse than I had told her and I could hardly use it. She took me to the Urgent Care Clinic, who gave me a knee immobilizer and crutches. That was it. No physical therapy-although looking back, physical therapy could very well have made it worse.
The knee kept hurting on and off through the years. I went back on crutches a few times, here and there, and the knee was weather-wise. It ached a lot, as did my other knee, but I figured I had injured the one and was hurting the other by using it to compensate, so that was normal, right? When I was about 15, it stopped giving me problems, and that lasted a couple years, until just before my 17th birthday when I jumped from a swing and landed badly.
Now I got the physical therapy for a few months, which helped out quite a bit. I was fine and saw no reason to be concerned until New Year's Day, 2011. I had been problem-free for over a year at this point-I was about to turn 19. I stepped out of my room and my right knee buckled, and I nearly crumpled. It wasn't as bad as back on the trampoline, but it was fairly severe pain and it lasted a while. I finally went to my general doctor, who referred me to an orthopedist (sports medicine doctor).
In early February of 2011, I first heard of Ehlers-Danlos Syndrome, or EDS. The orthopedic doctor looked at my knees, then asked me to bend my thumb down to touch my forearm. I couldn't understand why, but did so, with no difficulty. Then he pulled at the skin on the back of my hand and pointed out that it felt loose. And then he asked if I had ever heard of something called Ehlers-Danlos Syndrome.
EDS is a connective tissue disorder, caused by the body making defective collagen. It would be like trying to glue something together using water. In most people, their glue works fine, but in an EDS patient, it doesn't. And collagen is everywhere-in the heart, veins, most internal organs, along with skin, ligaments and tendons-the things that should have kept my knee in place when I jumped on that trampoline. I'm considered lucky-if I wasn't stretchy, I would most likely have snapped something.
After researching EDS, dozens of things began to make sense.
When I was about thirteen, I stepped on a lid from a can of cat food that our dog had managed to dig out of the trash. I felt absolutely nothing and...I try not to think what would have happened if my mom hadn't noticed me bleeding as I walked past her. It was late, and I was playing with my brother. If she had been asleep, or in her room, or almost anything...it's terrifying to realize that I might have very well just gone to sleep and bled to death. It was a huge gash in the instep of my right foot. EDS patients often have skins that tears easily. A stitch tore out when they were fixing it, and the stitches ended up being left in for twice what we expected, because they were healing slowly. Poor wound healing is another EDS marker.
When I was twelve (just about to turn thirteen) (yes, I was very accident-prone!), I was playing around on a couch. I crouched on the hard wooden arm of the couch and leaned about a foot or two forward, to grab onto the desk across from me with my hands. Then I carefully scooted my left foot to the desk and let go with my hands, to turn around and move back to the couch. I was in between the two when I lost my balance and fell, ending up with a broken arm. The problem was, I never noticed I was losing my balance. I had no chance to correct it. It wasn't something where I realized I was falling-one moment I was leaning towards the couch, the next I was lying in front of the bookcase on the floor, cradling my arm. Proprioception is the sense of where one's body is...it's like being able to understand how much space your body occupies, and where it is. It's something you take for granted. For example, hold your hands about shoulder-width apart, and spread your fingers. Now close your eyes and try to make your fingertips touch. As soon as your hands touch, stop, open your eyes, and check. I usually end up with my hands interlinked, because my fingers missed each other spectacularly. If I close my eyes and someone moves one of my hands somewhere and asks me to find it with the other hand, I can't. I once had my foot resting on a rail of my bunk bed, and decided to put my other foot on that rail. I only got both feet together by sliding the loose foot along each rail. I couldn't have told you where it was. Issues with proprioception go along with EDS.
My purple hands and feet were caused by my veins expanding (stretchiness, collagen in the veins) and blood pooling there. My dizziness when I stand up from sitting or lying down, or even from moving when I've been standing, is called POTS, and means that when the blood pooled in my legs and arms, my heart rate and blood pressure dropped significantly. When I move, my heart rate and bp both skyrocket to get blood to the brain, and if they don't do it quickly enough, then I get dizzy. My clumsiness that I've been teased over for years is when the proprioception is glitchy and I whack a shoulder or hip or knee or almost anything on a door, table, shoe, etc because I didn't realize my body was there.
I got my EDS diagnosis on February 9th, from a geneticist in Tennessee, and I am infinitely grateful to him. I am already getting onto a pain regimen, and now have a name and a diagnosed disorder to get accommodations for college. And I am one of the lucky ones. There are dozens of people who don't get diagnosed within a year of hearing of EDS, like I did, and there are hundreds of people who don't get diagnosed until much later in life...I'm not even 20 yet. But still, sometimes, I want to rant and cry. This will essentially be my diary-as things happen related to my EDS, they'll come here. Jessica Watts is not my real name, nor will I be posting my real name, because I want anonymity. But I'll go by Jessica on here, and try to give anyone reading a window into how my EDS life goes.
All this started when I was about 12. I was jumping on a trampoline with some friends and playing Follow the Leader-one person would do a trick and the other two tried to copy it. My tricks were dinky, easy stuff almost anyone could do, so probably on my third turn or so, they told me not to do something wimpy this time. I, of course, said that I wouldn't, and bounced, stalling for time. Then it hit me! I would come down from a jump on my right leg and bounce back up, going into a flip. Instead, I landed on my right leg, and my knee buckled backwards. It's not supposed to do that. I don't remember a lot of this...I felt it go backwards and incredibly intense pain. I crumpled, bawling like a baby and clutching my leg in agony. My friends were very concerned-one was a boy a year younger than me, the other a girl a couple months older than me. I barely managed to tell the boy that he needed to go get his older sister-I knew I couldn't walk, and she was the only one who could carry me. So she came running over with him (I kind of wonder, now, what he told her. "Jessica got hurt! She's crying!" or just "come quick!!") and got me into their house. Me and the other girl had slept over the night before and our moms hadn't come to pick us up.
I faked being okay very well-I figured it was just sore, and my mom would want to take me to a doctor, which I was sure I didn't need. Also, I wanted to sleep over that night and she wouldn't let me if I had gotten seriously hurt. So I said it was nothing, and kept saying that for a couple of days until the pain became too much and I admitted to her that it was worse than I had told her and I could hardly use it. She took me to the Urgent Care Clinic, who gave me a knee immobilizer and crutches. That was it. No physical therapy-although looking back, physical therapy could very well have made it worse.
The knee kept hurting on and off through the years. I went back on crutches a few times, here and there, and the knee was weather-wise. It ached a lot, as did my other knee, but I figured I had injured the one and was hurting the other by using it to compensate, so that was normal, right? When I was about 15, it stopped giving me problems, and that lasted a couple years, until just before my 17th birthday when I jumped from a swing and landed badly.
Now I got the physical therapy for a few months, which helped out quite a bit. I was fine and saw no reason to be concerned until New Year's Day, 2011. I had been problem-free for over a year at this point-I was about to turn 19. I stepped out of my room and my right knee buckled, and I nearly crumpled. It wasn't as bad as back on the trampoline, but it was fairly severe pain and it lasted a while. I finally went to my general doctor, who referred me to an orthopedist (sports medicine doctor).
In early February of 2011, I first heard of Ehlers-Danlos Syndrome, or EDS. The orthopedic doctor looked at my knees, then asked me to bend my thumb down to touch my forearm. I couldn't understand why, but did so, with no difficulty. Then he pulled at the skin on the back of my hand and pointed out that it felt loose. And then he asked if I had ever heard of something called Ehlers-Danlos Syndrome.
EDS is a connective tissue disorder, caused by the body making defective collagen. It would be like trying to glue something together using water. In most people, their glue works fine, but in an EDS patient, it doesn't. And collagen is everywhere-in the heart, veins, most internal organs, along with skin, ligaments and tendons-the things that should have kept my knee in place when I jumped on that trampoline. I'm considered lucky-if I wasn't stretchy, I would most likely have snapped something.
After researching EDS, dozens of things began to make sense.
When I was about thirteen, I stepped on a lid from a can of cat food that our dog had managed to dig out of the trash. I felt absolutely nothing and...I try not to think what would have happened if my mom hadn't noticed me bleeding as I walked past her. It was late, and I was playing with my brother. If she had been asleep, or in her room, or almost anything...it's terrifying to realize that I might have very well just gone to sleep and bled to death. It was a huge gash in the instep of my right foot. EDS patients often have skins that tears easily. A stitch tore out when they were fixing it, and the stitches ended up being left in for twice what we expected, because they were healing slowly. Poor wound healing is another EDS marker.
When I was twelve (just about to turn thirteen) (yes, I was very accident-prone!), I was playing around on a couch. I crouched on the hard wooden arm of the couch and leaned about a foot or two forward, to grab onto the desk across from me with my hands. Then I carefully scooted my left foot to the desk and let go with my hands, to turn around and move back to the couch. I was in between the two when I lost my balance and fell, ending up with a broken arm. The problem was, I never noticed I was losing my balance. I had no chance to correct it. It wasn't something where I realized I was falling-one moment I was leaning towards the couch, the next I was lying in front of the bookcase on the floor, cradling my arm. Proprioception is the sense of where one's body is...it's like being able to understand how much space your body occupies, and where it is. It's something you take for granted. For example, hold your hands about shoulder-width apart, and spread your fingers. Now close your eyes and try to make your fingertips touch. As soon as your hands touch, stop, open your eyes, and check. I usually end up with my hands interlinked, because my fingers missed each other spectacularly. If I close my eyes and someone moves one of my hands somewhere and asks me to find it with the other hand, I can't. I once had my foot resting on a rail of my bunk bed, and decided to put my other foot on that rail. I only got both feet together by sliding the loose foot along each rail. I couldn't have told you where it was. Issues with proprioception go along with EDS.
My purple hands and feet were caused by my veins expanding (stretchiness, collagen in the veins) and blood pooling there. My dizziness when I stand up from sitting or lying down, or even from moving when I've been standing, is called POTS, and means that when the blood pooled in my legs and arms, my heart rate and blood pressure dropped significantly. When I move, my heart rate and bp both skyrocket to get blood to the brain, and if they don't do it quickly enough, then I get dizzy. My clumsiness that I've been teased over for years is when the proprioception is glitchy and I whack a shoulder or hip or knee or almost anything on a door, table, shoe, etc because I didn't realize my body was there.
I got my EDS diagnosis on February 9th, from a geneticist in Tennessee, and I am infinitely grateful to him. I am already getting onto a pain regimen, and now have a name and a diagnosed disorder to get accommodations for college. And I am one of the lucky ones. There are dozens of people who don't get diagnosed within a year of hearing of EDS, like I did, and there are hundreds of people who don't get diagnosed until much later in life...I'm not even 20 yet. But still, sometimes, I want to rant and cry. This will essentially be my diary-as things happen related to my EDS, they'll come here. Jessica Watts is not my real name, nor will I be posting my real name, because I want anonymity. But I'll go by Jessica on here, and try to give anyone reading a window into how my EDS life goes.
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