I'm spending the day crafting and watching BBC documentaries - Victorian Farm and Edwardian Farm, particularly.
Not really crafting, I suppose, so much as mending; attaching buttons, repairing split seams, darning socks. I'm not very good at it, but I'm enjoying the work. I like the precision required and the utility of the finished products. Feeling useful is important to me, and it is also a rare feeling.
Perhaps it's that I haven't finished my degree yet, or that I don't have a career in my field. Hell, I don't really have a career at all, but a job. There isn't really any room for advancement unless I go into business for myself. I wouldn't rule that out in the future, once my debts are paid off, but for right now, I have to be content that I'm doing a job that requires observational skills and quick-thinking. And I am content, mostly.
I get down on myself for something that is entirely out of my control: the way my faulty collagen affects my movement, strength, and pain levels. I push myself to ignore my body's warnings and to not make excuses - "Sure, I can pick up an extra twelve-hour night shift at work" - but, I fear that I'm rather awful at it and that I cop out when I should adapt or innovate.
It's difficult to remember that my mind is subjective rather than objective in situations like these, and that my depression-and-anxiety-riddled brain is especially subjective. At times, such as in November, it is dangerously so. But really, my family is right; I shouldn't be so hard on myself.
Sure, my sewing isn't perfect and my knitting is quite slow, but I enjoy the work. It keeps my hands busy, of course, and it keeps my mind too busy to confuse my subjective and harmful thoughts for facts. That's probably the most important part.
Well, that, or that I'll finally have some socks to wear that don't have holes in them.
Showing posts with label bendy. Show all posts
Showing posts with label bendy. Show all posts
Tuesday, January 10, 2012
Thursday, October 27, 2011
I've secured a full-time job. Huzzah! And it's with dogs, too.
The three 12-hour night shifts in a row are a problem, though.
My insomnia works in my favour, but the fatigue and pain from hyperextending and locking joints, sore muscles, and chronic mild tendinitis makes for a long recovery. I'm on my feet most of the shift, and I'm not able to sit or lie down for more than an hour at a time. It's really wearing on my body, and my mind. I had a rough couple of days after I finished that last shift, and today, four days after my last shift, I'm finally feeling human - and I've only taken two installments of pain meds today. The first few days after the shifts, I was taking the maximum five installments, using ice and heat, exercising lightly to keep my joints moving, and sleeping as much as I could, and still being in too much pain to concentrate on anything other than police procedural dramas. And I get to start it all over again tonight.
However, I am really enjoying it. It's great working with dogs, and I can take Elliepup to work with me. She has a few friends there, and I think getting her exposed to excitement is helping her to become more tolerant of busy situations. Plus, the transit back and forth has made her a pro in her carrier.
I'm pleased to have a regular paycheque coming in, and soon I'll be able to start paying down my debt and my student loans. I'll be paying rent and my bills on my own, and, aside from the class I'm taking online (which my father generously offered to pay for), I'll be making it on my own. Doing all of that - feeling like an adult, finally - while having a bunch of permanent disabilities makes me feel good about myself. And that feeling, unfortunately, isn't one that I feel very often. So, I shall do my best to hold on to it, especially on the rough days.
I'm still applying for jobs in library and information sciences, as well as in the writing and editing fields. I've got a few hits in those, and they could lead to exciting places. Even if I don't get any further in those, for now, I'm pleased to have some interest from potential employers. This job market is abysmal, and I'm thrilled to have recognition from employers that my skills and experience just might be useful to them.
And really, on the toughest days, I curl up with some warm tea, some hounds, and my cat, and I try to imagine all of you out in the world, doing what you have to to get by.
What is it that you do to get through the tough days, friends? I'd love to know.
The three 12-hour night shifts in a row are a problem, though.
My insomnia works in my favour, but the fatigue and pain from hyperextending and locking joints, sore muscles, and chronic mild tendinitis makes for a long recovery. I'm on my feet most of the shift, and I'm not able to sit or lie down for more than an hour at a time. It's really wearing on my body, and my mind. I had a rough couple of days after I finished that last shift, and today, four days after my last shift, I'm finally feeling human - and I've only taken two installments of pain meds today. The first few days after the shifts, I was taking the maximum five installments, using ice and heat, exercising lightly to keep my joints moving, and sleeping as much as I could, and still being in too much pain to concentrate on anything other than police procedural dramas. And I get to start it all over again tonight.
However, I am really enjoying it. It's great working with dogs, and I can take Elliepup to work with me. She has a few friends there, and I think getting her exposed to excitement is helping her to become more tolerant of busy situations. Plus, the transit back and forth has made her a pro in her carrier.
I'm pleased to have a regular paycheque coming in, and soon I'll be able to start paying down my debt and my student loans. I'll be paying rent and my bills on my own, and, aside from the class I'm taking online (which my father generously offered to pay for), I'll be making it on my own. Doing all of that - feeling like an adult, finally - while having a bunch of permanent disabilities makes me feel good about myself. And that feeling, unfortunately, isn't one that I feel very often. So, I shall do my best to hold on to it, especially on the rough days.
I'm still applying for jobs in library and information sciences, as well as in the writing and editing fields. I've got a few hits in those, and they could lead to exciting places. Even if I don't get any further in those, for now, I'm pleased to have some interest from potential employers. This job market is abysmal, and I'm thrilled to have recognition from employers that my skills and experience just might be useful to them.
And really, on the toughest days, I curl up with some warm tea, some hounds, and my cat, and I try to imagine all of you out in the world, doing what you have to to get by.
What is it that you do to get through the tough days, friends? I'd love to know.
Sunday, September 11, 2011
I lucked out with my diagnosis.
Sure, a diagnosis of Ehlers-Danlos Syndrome isn’t particularly lucky, as it’s a chronic, progressive physical impairment marked by joint pain, dislocations, muscle spasms and neuropathy, and everything from swallowing difficulties to bladder problems. It also is often saddled with dysautonomia, which is modern doctor-speak for what used to be called “hysteria”; essentially, the autonomic system goes haywire. It can affect lots of other bodily systems that one might been thankful that their particular presentation of EDS had skipped over, resulting in low blood pressure, rapid or slow heart beat, dizziness, excessive thirst, and anxiety. Fun times, I know. (And I do know.)
No, having those rare diagnoses isn’t lucky. However, I came by them relatively easily, which is rather fortunate.
I have friends who have gone out of the country in order to be diagnosed and treated for their EDS and related ailments. I also have some friends who are currently fighting for the opportunities to be able to do so, since our Canadian health care system is great for many things, but treatment and funding for under-diagnosed rare genetic diseases are not some of them. I also have friends who came to their diagnoses after dealing with a hell of a lot more pain than I can even imagine, and I wish that their paths to diagnosis could have been easier for their bodies and their spirits.
I presented information on EDS to my General Practitioner. He, being a rather smart and compassionate obstetrician/gynecologist and family physician, understood that this was far beyond his knowledge base, so he offered to send me to a rheumatologist of my choosing. I chose one in the university town I was living in, despite knowing that my town needs at least another three family physicians, and that it certainly isn’t a hotspot for specialists either. I impatiently waited six months for the appointment. I went to the appointment, said very little;
“I’ve been experiencing joint and muscle pain that keeps me awake every night.”
“Yes, my brother is also known to be flexible. We call him Gumby.”
“Why yes, my mother does have arthritis. Yes, she did just have an MVP repaired. How did you guess?”
“Why yes, sleep apnea and swallowing difficulties do run in our family.”
And then was told that I have Ehlers-Danlos Syndrome, and probably dysautonomia as well. The rheumatologist was very nice and tried to answer my questions. She suggested I attend the conference in Baltimore next fall, and, if funds allow, consider a pilgrimage, of sorts, to the United Kingdom, where there are lots of doctors who specialize in EDS. She said that I need to have genetic testing done before I consider having children. It will determine which type of EDS I have – mostly, though, it’s to rule out the super scary vascular type in which organs can rupture and awful things can suddenly threaten one’s life. I also need to have my heart monitored regularly to see if I have a mitral valve prolapse or blood pressure problems. She ordered xrays of my neck, as she was curious about the lack of mobility in my shoulders and neck. Sure, it’s probably from my hypermobile shoulder blades jabbing into muscles and tendons in places where they shouldn’t, but I might also be missing a vertebrae or something, and it’ll be good to know. Just in case. Or something.
So, all-in-all, a relatively easy road to a diagnosis that is more of a relief than anything else.
I hope all those of you out there that are searching for a diagnosis have a simple time of it as well.
Good luck!
Sunday, July 10, 2011
Zebra Sleepover
I promised to write about the Zebra/bendy sleepover that I had with the Ontario group of friends with Ehlers Danlos Syndrome. My friend, Nakki, already wrote a fantastic recap of the evening, so please, please, check it out.
It didn't matter that I haven't been diagnosed with EDS, or that I might never be diagnosed with EDS. For them, understanding, support, and a willingness to learn was enough.
It didn't matter that I only knew one person before I arrived at Tiffany's house for the sleepover. Hell, it didn't even matter that I had never spoken to Tiffany before showing up to her house to sleepover. I felt closer to these women than I do to most of my friends -- I felt like they were family. Tiffany and Michele, especially, felt like the big sisters that I never had (although Michele is tinier than I am. Heh.).
It didn't matter that we don't all have the same symptoms. There were women there with Classical EDS, Hypermobile EDS, and Vascular EDS, and it didn't matter that I don't know what type I might have, or even if I do have it.
It didn't matter that I preferred to sit on the floor rather than in a chair or on the sofa. It didn't matter that someone preferred to lie down. It didn't matter that someone had to stay hydrated via a feeding tube. It didn't matter that we had to shift positions every few minutes or have our joints crack and pop when we moved.
It didn't matter that we're not doctors or that we can't diagnose anything. We could share our experiences about the medical system - we shared info on which doctors are great and which ones make our lives harder. We could also share our experiences of interacting with friends and family - we shared our fears, our disappointments, our triumphs, our anger, and most of all, our laughter.
Laughter really is the best medicine. We spent most of the evening and the next morning laughing, and the wee hours in between, too. I even cried - twice - as I was so touched by the energy in the room. It was an incredible experience, and it is one of the few things (along with the upcoming arrival of a niece or nephew) that makes me really consider not moving across the country.
Since the sleepover, three of my zebra friends have had hospital stays. One, that I felt particularly close to, kicked ass at recovering from a life-threatening condition. It was extremely scary there, for a little while. Well, it still is scary.
But we keep moving.
We stretch our overly stretchy ligaments, pop our crackly joints, we deal with the pain, and we keep moving.
Or we keep swimming, as Nakki says.
It didn't matter that I haven't been diagnosed with EDS, or that I might never be diagnosed with EDS. For them, understanding, support, and a willingness to learn was enough.
It didn't matter that I only knew one person before I arrived at Tiffany's house for the sleepover. Hell, it didn't even matter that I had never spoken to Tiffany before showing up to her house to sleepover. I felt closer to these women than I do to most of my friends -- I felt like they were family. Tiffany and Michele, especially, felt like the big sisters that I never had (although Michele is tinier than I am. Heh.).
It didn't matter that we don't all have the same symptoms. There were women there with Classical EDS, Hypermobile EDS, and Vascular EDS, and it didn't matter that I don't know what type I might have, or even if I do have it.
It didn't matter that I preferred to sit on the floor rather than in a chair or on the sofa. It didn't matter that someone preferred to lie down. It didn't matter that someone had to stay hydrated via a feeding tube. It didn't matter that we had to shift positions every few minutes or have our joints crack and pop when we moved.
It didn't matter that we're not doctors or that we can't diagnose anything. We could share our experiences about the medical system - we shared info on which doctors are great and which ones make our lives harder. We could also share our experiences of interacting with friends and family - we shared our fears, our disappointments, our triumphs, our anger, and most of all, our laughter.
Laughter really is the best medicine. We spent most of the evening and the next morning laughing, and the wee hours in between, too. I even cried - twice - as I was so touched by the energy in the room. It was an incredible experience, and it is one of the few things (along with the upcoming arrival of a niece or nephew) that makes me really consider not moving across the country.
Since the sleepover, three of my zebra friends have had hospital stays. One, that I felt particularly close to, kicked ass at recovering from a life-threatening condition. It was extremely scary there, for a little while. Well, it still is scary.
But we keep moving.
We stretch our overly stretchy ligaments, pop our crackly joints, we deal with the pain, and we keep moving.
Or we keep swimming, as Nakki says.
Tuesday, June 28, 2011
Brace Yourself
I gathered up enough courage to see an orthotist.
No, no, not an orthotist for shoe inserts (although, that wouldn't be a bad idea). Shoe orthotics are actually only one type of orthotics. A trained orthotist addresses all sorts of support and bracing needs -- from compression socks designed especially for diabetics, to neck braces and foot braces.
I saw an orthotist to see if a shoulder brace would be helpful. I'm currently doing my physio exercises and being mindful of not hyperextending my left shoulder, but it's not helping enough - I'm still getting a fair amount of numbness and weakness in my left hand after a long day of doing nothing in particular with my arms. I currently tape up my shoulder to limit its range of motion when I know I'll be doing yardwork or carrying things, but it's cumbersome and I get weird skin rashes and blisters from the tape. Well, the almost-doc (he's in training, and consulted with the experience doc on staff) said that what I really need is an entirely new shoulder, but that they don't make those. Ha. Thanks. Also, that the braces they do have would only be helpful if I want to immobilize my shoulder completely. I may need that in the future, he said, but that it's probably not helpful right now.
I also asked about my left knee. I wanted to know if it really is as unstable as I perceive it to be, or if I can correct that with more physio and targetted exercises. The orthotist said it shouldn't be anywhere near as unstable as it is, and that my kneecap shouldn't float around. He lent me a knee brace to try out for a few weeksto see if it helps. If it does, then I can consider investing in one. So far, I definitely feel better with it when I'm bending and moving around. Moving chairs and tables at work, and going up and down stairs was much more comfortable and sturdier. It also helps me keep from bending my knee backwards when I walk, which seems to be helping my back pain at night. I can't be certain, though, and I still don't know if it'll be worth it.
While struggling to pull the knee brace on, I also asked the orthotist about my fingers. And I watched his jaw drop, before he asked me to stop what I was doing. Okay. Then I tried again to pull the knee brace on, and he watched my fingers, and then hurried out of the room to, I suppose, talk to the guy in charge. I waited a few minutes, bending my knee, and enjoying the stability. And I worried.
The orthotist (in training) returned, apologized, and asked to examine my fingers. He asked what I specifically had problems with. I showed him how my fingers bend too far, apparently, and make it really difficult to hold a pencil and write for more than a few minutes without pain. I showed him how I hold cutlery, and how it's difficult to cut things with a knife. He examined my fingers again, and then left the room, again. Upon his return, he smiled and said that he could most certainly make me a custom finger splint to help me keep my index finger from hyperextending. Huzzah! And that I most certainly need one. I asked about the other fingers, but as this custom brace will likely run about $75, I probably won't be able to get them for more than one finger. Yikes. He said I definitely need them for all of my fingers, though, and when I showed him my toes, he cringed and asked if I had any way of seeing my rhuematologist earlier than planned. Smooth, guy. Really smooth. Heh. He was nice, though, and I felt better after seeing him.
But, that's good news. A: That I wasn't crazy about the hyperextensions, and B: that I will likely be able to find a solution for my index finger. Woot.
I have another appointment next week. I'm going to bring some information on Oval-8 finger splints, as well as silver ring splints (which are waaaaaaaaay out of my price range) to give him an idea of what's available. I don't really want to be his engineering guinea pig if I don't have to.
So, that's the update. I have a chiro appointment tomorrow morning, which is overdue, after subluxing some ribs a few weeks back. All of the dog walking I've been doing though has been strengthening my legs and my core, and I've even built up my lower back muscles to straighten out the excessive curve in my lower back, so I haven't been having as many problems with that. Yay!
I'll be dog-sitting for the next week, which is exciting. It'll test out if I'm up for fostering dogs in the fall. I hope so! I better hide the knee brace so the loaner dog doesn't eat it. Heh.
I hope you're all doing well and conquering your fears too. Asking for help is certainly scary, but it also shows just how strong you are. Or, so I believe.
No, no, not an orthotist for shoe inserts (although, that wouldn't be a bad idea). Shoe orthotics are actually only one type of orthotics. A trained orthotist addresses all sorts of support and bracing needs -- from compression socks designed especially for diabetics, to neck braces and foot braces.
I saw an orthotist to see if a shoulder brace would be helpful. I'm currently doing my physio exercises and being mindful of not hyperextending my left shoulder, but it's not helping enough - I'm still getting a fair amount of numbness and weakness in my left hand after a long day of doing nothing in particular with my arms. I currently tape up my shoulder to limit its range of motion when I know I'll be doing yardwork or carrying things, but it's cumbersome and I get weird skin rashes and blisters from the tape. Well, the almost-doc (he's in training, and consulted with the experience doc on staff) said that what I really need is an entirely new shoulder, but that they don't make those. Ha. Thanks. Also, that the braces they do have would only be helpful if I want to immobilize my shoulder completely. I may need that in the future, he said, but that it's probably not helpful right now.
I also asked about my left knee. I wanted to know if it really is as unstable as I perceive it to be, or if I can correct that with more physio and targetted exercises. The orthotist said it shouldn't be anywhere near as unstable as it is, and that my kneecap shouldn't float around. He lent me a knee brace to try out for a few weeksto see if it helps. If it does, then I can consider investing in one. So far, I definitely feel better with it when I'm bending and moving around. Moving chairs and tables at work, and going up and down stairs was much more comfortable and sturdier. It also helps me keep from bending my knee backwards when I walk, which seems to be helping my back pain at night. I can't be certain, though, and I still don't know if it'll be worth it.
While struggling to pull the knee brace on, I also asked the orthotist about my fingers. And I watched his jaw drop, before he asked me to stop what I was doing. Okay. Then I tried again to pull the knee brace on, and he watched my fingers, and then hurried out of the room to, I suppose, talk to the guy in charge. I waited a few minutes, bending my knee, and enjoying the stability. And I worried.
The orthotist (in training) returned, apologized, and asked to examine my fingers. He asked what I specifically had problems with. I showed him how my fingers bend too far, apparently, and make it really difficult to hold a pencil and write for more than a few minutes without pain. I showed him how I hold cutlery, and how it's difficult to cut things with a knife. He examined my fingers again, and then left the room, again. Upon his return, he smiled and said that he could most certainly make me a custom finger splint to help me keep my index finger from hyperextending. Huzzah! And that I most certainly need one. I asked about the other fingers, but as this custom brace will likely run about $75, I probably won't be able to get them for more than one finger. Yikes. He said I definitely need them for all of my fingers, though, and when I showed him my toes, he cringed and asked if I had any way of seeing my rhuematologist earlier than planned. Smooth, guy. Really smooth. Heh. He was nice, though, and I felt better after seeing him.
But, that's good news. A: That I wasn't crazy about the hyperextensions, and B: that I will likely be able to find a solution for my index finger. Woot.
I have another appointment next week. I'm going to bring some information on Oval-8 finger splints, as well as silver ring splints (which are waaaaaaaaay out of my price range) to give him an idea of what's available. I don't really want to be his engineering guinea pig if I don't have to.
So, that's the update. I have a chiro appointment tomorrow morning, which is overdue, after subluxing some ribs a few weeks back. All of the dog walking I've been doing though has been strengthening my legs and my core, and I've even built up my lower back muscles to straighten out the excessive curve in my lower back, so I haven't been having as many problems with that. Yay!
I'll be dog-sitting for the next week, which is exciting. It'll test out if I'm up for fostering dogs in the fall. I hope so! I better hide the knee brace so the loaner dog doesn't eat it. Heh.
I hope you're all doing well and conquering your fears too. Asking for help is certainly scary, but it also shows just how strong you are. Or, so I believe.
Wednesday, March 23, 2011
Physio and other developments
I have needed a bit of breathing room lately.
Aside from the usual stresses of mental health issues, school, and work, I've been dealing with some physical health issues.
I've started physio to strengthen my back muscles in an effort to stabilize my joints, and it has shown me just how out of shape I am. Eep. I also have to concentrate on walking normally, rather than subluxing my hips, knees, and ankles as I walk, and that's taking a great deal of strength that I didn't foresee.
However, it's going well so far, and I'm exhausted at night (and during the day, but what else is new?) and am sleeping better. I awake before my alarm does, feeling almost refreshed, and ready to start the day. Sure, I need a nap in the afternoon, but it's a relief to feel.. relieved.. so I'm not complaining. Being physically sore is trying, especially since I haven't noticed the benefits of physio yet. I have faith that it's a good step for me though - especially while I have health coverage. Heh.
The chiropractic treatments are also going well. I'm definitely noticing improvement in my gait and posture, and my headaches are becoming less severe. My shoulders, especially my wonky left one, are still causing enough pain to warrant ice when they're inflamed and heat when they're a mess of knots and trigger points. I had inflammation in my neck at the start of my chiropractic treatment program, but as the muscles in my neck strengthened to support my head in its new healthy position, the pain lessened, thankfully. There were a few days in which the maximum dosage allowed of of anti-inflammatories couldn't keep me from crying in pain. But, as I said, that has passed, so hurrah. I have two more treatments before I get my next assessment and a report on my progress with the chiropractic treatments so far.
I also had a rather awful run-in with an ableist professor. She abused her position as a senior tutor with access to academic records and said some terrible things to me in a meeting that was not in any way constructive. It would have driven me to the psychiatric crisis centre in the hospital if I hadn't already been on the way to the mental health outpatient clinic, so.. lucky for me? Sigh. I feel betrayed by my academic department, my university, and even, a little bit, by the people who thought she would be just and encouraged me to meet with her. I'm so angered by the situation that I don't want to recount it, and, besides that, I don't feel that it's appropriate to go into details in such a public forum. It will be dealt with through the proper academic channels, to be sure. For now, my energy will be put to better use working on assignments and getting healthy.
I have a doctor's appointment with my general practitioner on Friday. I'll introduce him to the idea of Ehlers Danlos Syndrome, and share the physiotherapist's opinions with him. I am definitely hypermobile and exhibit all of the symptoms of hypermobility syndrome, but it has not yet been determined if it's in fact EDS hypermobility type or not. My stretchy skin, digestive problems, and family history suggests that EDS should be considered in the differential diagnosis. I'll have to visit a rheumatologist to get an informed medical opinion on the matter, and genetic testing and a skin biopsy could also be useful. It could show a deformity in my collagen cells, and it could narrow down the potential EDS diagnosis to a specific type.
So, that's the plan for this week.
And on the horizon: moving plans, new housecat, and a DJ gig at a cupcake contest.
Yep. You read correctly. It'll be delicious.
Aside from the usual stresses of mental health issues, school, and work, I've been dealing with some physical health issues.
I've started physio to strengthen my back muscles in an effort to stabilize my joints, and it has shown me just how out of shape I am. Eep. I also have to concentrate on walking normally, rather than subluxing my hips, knees, and ankles as I walk, and that's taking a great deal of strength that I didn't foresee.
However, it's going well so far, and I'm exhausted at night (and during the day, but what else is new?) and am sleeping better. I awake before my alarm does, feeling almost refreshed, and ready to start the day. Sure, I need a nap in the afternoon, but it's a relief to feel.. relieved.. so I'm not complaining. Being physically sore is trying, especially since I haven't noticed the benefits of physio yet. I have faith that it's a good step for me though - especially while I have health coverage. Heh.
The chiropractic treatments are also going well. I'm definitely noticing improvement in my gait and posture, and my headaches are becoming less severe. My shoulders, especially my wonky left one, are still causing enough pain to warrant ice when they're inflamed and heat when they're a mess of knots and trigger points. I had inflammation in my neck at the start of my chiropractic treatment program, but as the muscles in my neck strengthened to support my head in its new healthy position, the pain lessened, thankfully. There were a few days in which the maximum dosage allowed of of anti-inflammatories couldn't keep me from crying in pain. But, as I said, that has passed, so hurrah. I have two more treatments before I get my next assessment and a report on my progress with the chiropractic treatments so far.
I also had a rather awful run-in with an ableist professor. She abused her position as a senior tutor with access to academic records and said some terrible things to me in a meeting that was not in any way constructive. It would have driven me to the psychiatric crisis centre in the hospital if I hadn't already been on the way to the mental health outpatient clinic, so.. lucky for me? Sigh. I feel betrayed by my academic department, my university, and even, a little bit, by the people who thought she would be just and encouraged me to meet with her. I'm so angered by the situation that I don't want to recount it, and, besides that, I don't feel that it's appropriate to go into details in such a public forum. It will be dealt with through the proper academic channels, to be sure. For now, my energy will be put to better use working on assignments and getting healthy.
I have a doctor's appointment with my general practitioner on Friday. I'll introduce him to the idea of Ehlers Danlos Syndrome, and share the physiotherapist's opinions with him. I am definitely hypermobile and exhibit all of the symptoms of hypermobility syndrome, but it has not yet been determined if it's in fact EDS hypermobility type or not. My stretchy skin, digestive problems, and family history suggests that EDS should be considered in the differential diagnosis. I'll have to visit a rheumatologist to get an informed medical opinion on the matter, and genetic testing and a skin biopsy could also be useful. It could show a deformity in my collagen cells, and it could narrow down the potential EDS diagnosis to a specific type.
So, that's the plan for this week.
And on the horizon: moving plans, new housecat, and a DJ gig at a cupcake contest.
Yep. You read correctly. It'll be delicious.
Friday, February 25, 2011
Reading your own X-Rays? Yup. There's an app for that.
It's time for another show-and-tell. This time, it's about my progress on slowing the progression of my possible Hyper Mobility Syndrome/Ehlers Danlos Syndrome. Yes, progress on slowing progress. That's right.
In English: putting, and keeping, my joints in their places in order to:
Here are a few of my recent x-rays, which show that this isn't all in my head.
I'm going to the chiropractor twice a week for 5 or 6 weeks, and then I'll decrease the frequency of the sessions. The chiropractor is one of those new-fangled ones with all sorts of devices and ways to make adjustments as relaxing and as simple as possible for me. That's good news, because these newer methods make for a gentler visit and keeps my joints happy. So far, my body is adjusting really easily (probably due to the extra elasticity, ha!) and my neck is holding in place fairly well. My ribs and hips don't like to stay in place, but they feel fantastic for the first hour or so after the adjustment. Once they go back into their normal routine, I can feel that it's more difficult to walk and that I'm clumsier and not as strong.
I'm also have a physio appointment booked for two weeks from now. I'm going to get an assessment and see what they recommend. For now, though, it seems odd: they only work on one joint or problem at a time. Um.. sure.. that's one way to do it.. I explained that every joint in my body is hypermobile and that most partially dislocate every day, which causes me pain, stiffness, blah blah, but they asked me to pick one joint to work on. So.. left shoulder it is. They'll have fun with that one. I partially dislocate it whenever I move it, so it'll be a good test of the physio's chops to see if she can make sense of it.
In an attempt to prove that this isn't all in my head, I asked my chiro for temporary solutions for shoulder instability. He suggested seeing if a physio recommended taping my shoulder into place, like athletes do to prevent injuries. I jumped the gun, found a good physio website, and followed the instructions to tape my shoulder into a stable position with sports tape.
The taping looks awful, because it's remarkably difficult to tape your own shoulder, I've discovered, even if your other arm is super bendy and can extend in odd angles. I got my partner to retape my shoulder the next day, and his tape job was much neater than mine.
During those two days, my left shoulder felt fantastic! My neck wasn't as tight or sore, and my left shoulder didn't feel anywhere near as stiff and tired as my right shoulder did. It improved my posture a bit, and I don't think it limited my range of motion much more than is the normal range for people. I couldn't reach in ways that I usually do, but I was able to sit in a chair for much longer without becoming uncomfortable, and I knit for hours longer than I'm usually able to. (I was listening to an audio book for school while knitting. It wasn't a completely frivolous use of my time!) I also slept really well, and was actually very comfortable in bed - which is rare for me. I usually toss and turn, changing my position every half hour or so. Therefore, I was a quick convert to sports taping, and was eager to see a physiotherapist to learn taping techniques and to get official medical approval.
So, last night: I had been wearing the tape for about 8 hours, and my shoulder had felt a little itchy during the day, but it wasn't enough to concern me, and certainly wasn't enough to outweigh the benefits that the tape afforded me. That was, until I took off the tape off and was greeted with this:
Eek! I was super itchy, but instead of scratching it, I put some lovely moisturizer on it. The moisturizer I use is also used for hospital patients with sensitive skin - like those undergoing chemo. So, it's good stuff and didn't cause the irritation. I still wasn't too concerned because, well, I had just removed the tape and I figured that a certain amount of itching was normal. I'd let it breathe for the night and retape it in the morning, even though I knew that sleeping without it taped up would mean that I would have a tricky time getting comfy in bed. But, I had to follow the cautions and not keep the tape on for an extended period of time (the tape packaging suggested 12h as a max).
Regardless, I woke up this morning to this:
So, no more sports taping for me, I guess. At least not unless the physio suggests kinesio tape, which a friend recommends as the least likely to give EDSers a tape rash, or, perhaps, just a minimal rash if your other EDS symptoms are mild, like mine are.
Good thing I only bought four rolls of the tape. Sigh.
In English: putting, and keeping, my joints in their places in order to:
- immediately - decrease my clumsiness & help me sleep better
- near future - decrease my pain & fatigue
- far future - decrease my chances of early arthritis & need for braces and other aids to help me do everyday things
Here are a few of my recent x-rays, which show that this isn't all in my head.
 |
| Ohai, fused vertebrae! |
 |
| Ohai, misaligned ribs! |
I'm also have a physio appointment booked for two weeks from now. I'm going to get an assessment and see what they recommend. For now, though, it seems odd: they only work on one joint or problem at a time. Um.. sure.. that's one way to do it.. I explained that every joint in my body is hypermobile and that most partially dislocate every day, which causes me pain, stiffness, blah blah, but they asked me to pick one joint to work on. So.. left shoulder it is. They'll have fun with that one. I partially dislocate it whenever I move it, so it'll be a good test of the physio's chops to see if she can make sense of it.
In an attempt to prove that this isn't all in my head, I asked my chiro for temporary solutions for shoulder instability. He suggested seeing if a physio recommended taping my shoulder into place, like athletes do to prevent injuries. I jumped the gun, found a good physio website, and followed the instructions to tape my shoulder into a stable position with sports tape.
The taping looks awful, because it's remarkably difficult to tape your own shoulder, I've discovered, even if your other arm is super bendy and can extend in odd angles. I got my partner to retape my shoulder the next day, and his tape job was much neater than mine.
During those two days, my left shoulder felt fantastic! My neck wasn't as tight or sore, and my left shoulder didn't feel anywhere near as stiff and tired as my right shoulder did. It improved my posture a bit, and I don't think it limited my range of motion much more than is the normal range for people. I couldn't reach in ways that I usually do, but I was able to sit in a chair for much longer without becoming uncomfortable, and I knit for hours longer than I'm usually able to. (I was listening to an audio book for school while knitting. It wasn't a completely frivolous use of my time!) I also slept really well, and was actually very comfortable in bed - which is rare for me. I usually toss and turn, changing my position every half hour or so. Therefore, I was a quick convert to sports taping, and was eager to see a physiotherapist to learn taping techniques and to get official medical approval.
So, last night: I had been wearing the tape for about 8 hours, and my shoulder had felt a little itchy during the day, but it wasn't enough to concern me, and certainly wasn't enough to outweigh the benefits that the tape afforded me. That was, until I took off the tape off and was greeted with this:
Eek! I was super itchy, but instead of scratching it, I put some lovely moisturizer on it. The moisturizer I use is also used for hospital patients with sensitive skin - like those undergoing chemo. So, it's good stuff and didn't cause the irritation. I still wasn't too concerned because, well, I had just removed the tape and I figured that a certain amount of itching was normal. I'd let it breathe for the night and retape it in the morning, even though I knew that sleeping without it taped up would mean that I would have a tricky time getting comfy in bed. But, I had to follow the cautions and not keep the tape on for an extended period of time (the tape packaging suggested 12h as a max).
Regardless, I woke up this morning to this:
So, no more sports taping for me, I guess. At least not unless the physio suggests kinesio tape, which a friend recommends as the least likely to give EDSers a tape rash, or, perhaps, just a minimal rash if your other EDS symptoms are mild, like mine are.
Good thing I only bought four rolls of the tape. Sigh.
Sunday, February 6, 2011
Down and Out
Why didn't I post this week?
Because Depression got the better of me. I skipped some classes (some were canceled, though!) because I reasoned that the class would be better off without me, or because I would not have anything intelligent to say and would start crying. Those things sound silly now, but they made perfect sense at the time. Sigh.
Yes, I was taking my meds. I even picked up some more vitamins and added a few supplements. Here's a list, because I'm in the process of making lists for an assignment, and I'm all listy and whatnot. Yep.
Morning:
Despite these chemical assistants, I was really down this week. I noticed more of my joints partially dislocating, and I've been feeling sore due to a nasty fall on the ice. I sprained my right wrist, and possibly my right ankle. They're not too bad, probably because they're used to hyperextending, but they're not very happy either.
I also had to take my pets to the vet. They even had a sleepover, since the weather report called for a snowstorm and my vet's office is in the rural outskirts of town. I spent money that I don't have to get them all polished up and given their vaccines and have some minor day surgery to improve their quality of life -- and I was a mess being at home without them. I was even a mess without Kitten, who, although presently snuggling me in my bed, which is forbidden, is usually largely ignored by me and loved from a distance due to my annoying feline allergy. Prrrow.
I'm seeing the meds doc this week, so I will ask him about a few things and mention that I'm still clinging to my bed rather than even venturing out into the living room, or, higher power forbid, outside! I bet it's just general malaise from trying to use my muscles and joints as they were designed to be used, rather than how my bendy body has decided to use them.
I'll try to be more cheerful this week. I get to talk to a loan agent at the bank, which will aid in the money situation, and I also am studying topics that I enjoy in my classes. Maybe it'll even warm up enough to take the pup on a walk, or a frolic in the park! I'd enjoy that.
Here's to a better week, readers, and I hope that your spirits are lifted as well.
Because Depression got the better of me. I skipped some classes (some were canceled, though!) because I reasoned that the class would be better off without me, or because I would not have anything intelligent to say and would start crying. Those things sound silly now, but they made perfect sense at the time. Sigh.
Yes, I was taking my meds. I even picked up some more vitamins and added a few supplements. Here's a list, because I'm in the process of making lists for an assignment, and I'm all listy and whatnot. Yep.
Morning:
- Prozac for depression
- Wellbutrin for depression
- Calcium, Magnesium, and Vitamin D for healthy bones and tissues
- B12 because I'm not getting enough in my diet
- (I should also take Iron, but I'm gonna see if I need it on my next doc visit)
- Buspar for anxiety
- Levothyroxine for my under active thyroid
- Septra for chronic UTIs
- Valerian root, catnip, and lemon balm as sleep aids
- St John's wort for depression (need to check with doc about this too)
Despite these chemical assistants, I was really down this week. I noticed more of my joints partially dislocating, and I've been feeling sore due to a nasty fall on the ice. I sprained my right wrist, and possibly my right ankle. They're not too bad, probably because they're used to hyperextending, but they're not very happy either.
I also had to take my pets to the vet. They even had a sleepover, since the weather report called for a snowstorm and my vet's office is in the rural outskirts of town. I spent money that I don't have to get them all polished up and given their vaccines and have some minor day surgery to improve their quality of life -- and I was a mess being at home without them. I was even a mess without Kitten, who, although presently snuggling me in my bed, which is forbidden, is usually largely ignored by me and loved from a distance due to my annoying feline allergy. Prrrow.
I'm seeing the meds doc this week, so I will ask him about a few things and mention that I'm still clinging to my bed rather than even venturing out into the living room, or, higher power forbid, outside! I bet it's just general malaise from trying to use my muscles and joints as they were designed to be used, rather than how my bendy body has decided to use them.
I'll try to be more cheerful this week. I get to talk to a loan agent at the bank, which will aid in the money situation, and I also am studying topics that I enjoy in my classes. Maybe it'll even warm up enough to take the pup on a walk, or a frolic in the park! I'd enjoy that.
Here's to a better week, readers, and I hope that your spirits are lifted as well.
Monday, January 31, 2011
My brother is nicknamed "Gumby"
I feel relieved. Upon researching a genetic condition that affects collagen, which two of my friends have, I realized that I probably have it too. Yes, I am known to be a hypochondriac, and a wee bit psychosomatic. However, I cannot make my skin stretchier or my joints partially dislocate (sublux) just by imagining that they do. I can, however, make my joints sublux by something as simple as shrugging, rolling over in bed, or standing still. Tonight at Stitch & Bitch, people remarked at how often and loudly my joints cracked. Last week, we discovered that my jaw clicks loudly enough for others to hear. Awesome.
Here are some characteristics of this disorder, called Ehlers-Danlos Syndrome. I have bolded the symptoms that I have, as well as symptoms that my eldest brother and my mother have, as I am suspicious that they have this too. I've taken this from Wikipedia. Not a medical source, to be sure, but still helpful.
I have what is considered to be abnormally stretch skin, too, but photographic evidence will have to wait until I
A: get photo booth to work again
B: fish out my awesome DSLR, tripod, and remote, or
C: Solicit someone to help
So. Yeah. According to medical sites, both genetic and orthopedic, I definitely exhibit signs of hypermobility, which isn't necessarily Ehlers-Danlos Syndrome, but add in my stretchy see-through skin, which scars oddly, and it's more likely that I have EDS. Probably a mild case of Type 3, which classified as the hypermobility type (confused yet? You should be.) rather than a classical type.
The hypermobility type, unfortunately, doesn't have a particular genetic test that can be done to get a positive diagnosis, unlike the other types, which do. Even without a positive EDS diagnosis, I'm definitely hypermobile and walk funnily, so I should at least be able to get a referral to physio to learn how to build up my muscles in ways that don't aggravate my joints.
Here are some characteristics of this disorder, called Ehlers-Danlos Syndrome. I have bolded the symptoms that I have, as well as symptoms that my eldest brother and my mother have, as I am suspicious that they have this too. I've taken this from Wikipedia. Not a medical source, to be sure, but still helpful.
- Highly flexible fingers and toes
- Loose, unstable joints that are prone to: sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness)
- Flat feet
- Joint pain without inflammation
- Fatigue, which can be debilitating
- High and narrow palate, resulting in dental crowding
- Vulnerability to chest and sinus infections
- Easy bruising
- Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
- Velvety-smooth skin which may be stretchy and is often translucent, with blue veins clearly visible on limbs and particularly in the hands
- Abnormal wound healing and scar formation (scars may appear like cigarette burns)
- Low muscle tone and Muscle weakness
- Early onset of osteoarthritis
- Cardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse,
- Unexplained "pins and needles" or numbness in extremities
- Difficulty regulating own body temperature, resulting in a vulnerability to the cold and heat. Many patients suffer fatigue and dizziness when exposed to hot conditions, eg. having to sit outside on a hot day
- Severe mouth ulcers. Many patients complain of having several mouth ulcers at any one time. This is believed to be due to tissue fragility and vulnerability to infection
- Food allergies and intolerances are very common
- Sensitivity to medications. One of the cruelest aspects of EDS is that many patients experience bad reactions to medications, such as pain killers, making it very difficult to find safe, effective pain management
- Migraines and headaches
- Fibromyalgia symptoms: Myalgia and arthralgia
- Osteopenia (low bone density)
- Talipes equinovarus (club foot), especially in the Vascular type
- Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility,[8] Arnold-Chiari malformation (brain disorder)
- Functional bowel disorders (functional gastritis, irritable bowel syndrome)
- Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
- Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
- Blue sclera
- Otosclerosis (hearing loss)
- Premature rupture of membranes during pregnancy
- Platelet aggregation failure (platelets do not clump together properly)
- Infants with hypermobile joints often appear to have weak muscle tone (hypotonia), which can delay the development of motor skills such as sitting, standing, and walking
- Arterial/intestinal/uterine fragility or rupture
- Swan neck deformity of the fingers
 | ||
| I use my pinky to scratch my ring finger. I usually do this unconsciously. |
 |
| This is what a friend has dubbed "The EDS Gang Sign" |
 |
| Apparently hypermobile fingers. Seems normal to me. Thumb at rest. |
 | |
| Indent = Sulcus Sign. Partially dislocated shoulder. Notice the road map of veins due to thin skin. |
 | |
| If I were you, I wouldn't trust my bendy fingers, but that hole is where my shoulder bone is supposed to be. |
 |
| How I usually stand to feel stable. Partially dislocated knee, unstable ankle. That blue tinge is from my veins showing through my skin. I also thought that was normal. |
 |
| This is how I hold a pen because my index finger is super bendy. |
 |
| Holding a thick marker is easier than holding a thin pencil |
 |
| I can use my stable thumb to support the marker. My fingers are "boutonairre" and unstable. |
 |
| Arm is more than 90 degrees backwards from my torso. I can extend it backwards to about 145 degrees. Shoulder is partially dislocated at the back. |
 |
| Inside of elbow up, palm up, dog up. |
 |
| Inside of elbow up, palm down (and rotated to the right), dog down. |
 |
| Inside of elbow up, palm up, fingers extended. |
 |
| Right thumb touching forearm. (Other hand holding camera) |
 |
| Right arm straight at 180 degrees. It's hard to hold it steady here. |
 |
| This is how my right arm usually bends - past 180 degrees. |
 |
| Left thumb touching forearm. This wrist might be partially dislocated. I dunno. |
A: get photo booth to work again
B: fish out my awesome DSLR, tripod, and remote, or
C: Solicit someone to help
So. Yeah. According to medical sites, both genetic and orthopedic, I definitely exhibit signs of hypermobility, which isn't necessarily Ehlers-Danlos Syndrome, but add in my stretchy see-through skin, which scars oddly, and it's more likely that I have EDS. Probably a mild case of Type 3, which classified as the hypermobility type (confused yet? You should be.) rather than a classical type.
The hypermobility type, unfortunately, doesn't have a particular genetic test that can be done to get a positive diagnosis, unlike the other types, which do. Even without a positive EDS diagnosis, I'm definitely hypermobile and walk funnily, so I should at least be able to get a referral to physio to learn how to build up my muscles in ways that don't aggravate my joints.
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