I can now, while sitting on the sofa with my feet on the floor, lift my left foot off the ground by a whole two inches, w00ts! ^_^ I've been doing that in lots of ten reps, holding for three seconds each time, throughout today. It's quite painful, but feels amazing to be able to actually work the muscles in my knee =] Y'know that acid-in-the-muscle, glorious feeling when you know you've pushed your muscles far enough to make a difference, but not far enough to do damage? Yeah =]
Meanwhile, since doing so little during the day inevitably results in an inability to sleep, I've been watching a whole lot of Scrubs and House, lately =] It's occurred to me that there's probably something significant about my love of (good) medical shows -- even to the point where I prefer Silent Witness to Morse -- but meh ^_^
I'm still hanging out for House to do an episode about EDS -- I mean, the possibilities are almost endless, even so far as the FMS/EDS cross-overs -- but at the same time, I'm worried they'll get their facts wrong and end up misrepresenting EDS =/ That would sort of defeat the point in me wanting them to cover it -- that point being to raise awareness. But I suppose, either way, so long as they get the basic symptoms right...?
Meanwhile, I'm no longer the only one going stir crazy. Pippa (our little Brussels Griffon) isn't getting her usual two walks a day at the moment, because of the weather. She really does need them, too -- she has an insane amount of energy, haha. Every time a cat moves, at the moment (we have two), she leaps off the sofa barking. The funny part is that she fails at running across tiles and just sort of skitters until she lands on her butt and sort of slides across the floor, still barking XD
I know they say not to mock the afflicted, but I am the afflicted, so =P Hehe.
<33 Kitty
Monday, June 28, 2010
Sunday, June 27, 2010
Brrrrrrrrr!!
Okay, I know I'm a wuss for saying it, but it is freezing here! During the day it's been around 15-17*C the last few days, which is fine, but the last couple of nights it's dropped below zero, which is quite rare here in Perth. The worst part is that, since I have to sleep with my leg in a splint, I can't wear pyjama pants to bed, just a nightie and a jumper (with the hood up, lol). So no matter how warm the rest of me is, my legs are still cold!
But I'd still rather deal with the cold than the heat and humidity =D At least it's easier to defend against =] I've spent most of today rugged up on the sofa with my little dog Pippa keeping my feet warm.
Unfortunately, all this time spent in doors means I'm at the mercy of any cold that my dad, mum or sister brings home, lol. I've been taking Sudafed (with pseudoephedrine) every day, trying to keep it at bay, which is causing some major GI issues. I have reflux and nausea every day as it is, but the Sudafed makes all that so much worse =/ I've had to double my doses of Nexium and Motilium and my symptoms are still not completely under control. But then, my insides will hate me so much more if I end up on antibiotics, so I'm determined to push through with the Sudafed, lol.
My dad took me to Wanneroo Markets, today, which was great =] I'm down to using just one of my crutches to get around and I can hobble a bit without it, but because the joints of my other leg are so unstable, I try not to, in case I dislocate something and fall. It's almost happened several times -- like one of my hips or my right ankle have "gone" and I've just managed to catch myself.
I was present-hunting for my friend Jonesy's birthday and didn't find what I was looking for, but it was so good just to be out =] Even if my back and right shoulder/arm are complaining loudly, lol.
Hehe, we also bought a dog coat for Pippa, today. She's been shivering, constantly, but she hates her coat so much XD She won't do anything while she has it on, just stands there sulking, poor thing. I hope she'll get used to it -- she gets walked quite early, while it's still cold, and she'll need it as the weather gets colder. It's amazing to think that we're only in the first month of winter and it's already this chilly!
Anyway, apart from the dog chasing the cat round and round the coffee table every so often, life is pretty boring at the moment, lol, so I'll wrap it up here =]
Thanks for reading ^_^
<33 Kitty
But I'd still rather deal with the cold than the heat and humidity =D At least it's easier to defend against =] I've spent most of today rugged up on the sofa with my little dog Pippa keeping my feet warm.
Unfortunately, all this time spent in doors means I'm at the mercy of any cold that my dad, mum or sister brings home, lol. I've been taking Sudafed (with pseudoephedrine) every day, trying to keep it at bay, which is causing some major GI issues. I have reflux and nausea every day as it is, but the Sudafed makes all that so much worse =/ I've had to double my doses of Nexium and Motilium and my symptoms are still not completely under control. But then, my insides will hate me so much more if I end up on antibiotics, so I'm determined to push through with the Sudafed, lol.
My dad took me to Wanneroo Markets, today, which was great =] I'm down to using just one of my crutches to get around and I can hobble a bit without it, but because the joints of my other leg are so unstable, I try not to, in case I dislocate something and fall. It's almost happened several times -- like one of my hips or my right ankle have "gone" and I've just managed to catch myself.
I was present-hunting for my friend Jonesy's birthday and didn't find what I was looking for, but it was so good just to be out =] Even if my back and right shoulder/arm are complaining loudly, lol.
Hehe, we also bought a dog coat for Pippa, today. She's been shivering, constantly, but she hates her coat so much XD She won't do anything while she has it on, just stands there sulking, poor thing. I hope she'll get used to it -- she gets walked quite early, while it's still cold, and she'll need it as the weather gets colder. It's amazing to think that we're only in the first month of winter and it's already this chilly!
Anyway, apart from the dog chasing the cat round and round the coffee table every so often, life is pretty boring at the moment, lol, so I'll wrap it up here =]
Thanks for reading ^_^
<33 Kitty
Wednesday, June 23, 2010
Open Letter to Those WITHOUT Ehlers-Danlos Syndrome (and for those with it)
My friend Kari found this on a Norwegian forum, but the author's name was not given. Because I'm a little OCD, I've corrected a few grammatical mistakes, but apart from that, it's exactly as it was when Kari posted it on Facebook =]
-----------------------------------------------------------------
Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
...These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones? If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. EDS has taken so much away from me. I can no longer do many of the things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.
Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc., and most of the time I'd still like to hear you talk about yours, too.
Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who have to deal with the consequences. I still want to be part of the "gang". Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else, but I can bring the hot chocolate and watch.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth, so even if I was only diagnosed recently, I have been suffering from this since I was born). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure. Only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability from EDS move around. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee. Who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away, either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on. It applies to EVERYTHING that I do. Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own?) but they are not caused by Depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it, then I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something more exciting. EDS does not forgive its victims easily.
Please understand that I can't spend all of my energy trying to get well from EDS. It is incurable and genetic, so unless I can change my genes I cannot change my disease/disorder. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.
As you can see EDS really sucks.
Finally, please remember that I am the same person I was before I was diagnosed with (or started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh and I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
(Author Unknown)
-----------------------------------------------------------------
Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
...These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones? If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. EDS has taken so much away from me. I can no longer do many of the things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.
Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc., and most of the time I'd still like to hear you talk about yours, too.
Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who have to deal with the consequences. I still want to be part of the "gang". Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else, but I can bring the hot chocolate and watch.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth, so even if I was only diagnosed recently, I have been suffering from this since I was born). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure. Only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability from EDS move around. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee. Who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away, either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on. It applies to EVERYTHING that I do. Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own?) but they are not caused by Depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it, then I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something more exciting. EDS does not forgive its victims easily.
Please understand that I can't spend all of my energy trying to get well from EDS. It is incurable and genetic, so unless I can change my genes I cannot change my disease/disorder. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.
As you can see EDS really sucks.
Finally, please remember that I am the same person I was before I was diagnosed with (or started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh and I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
(Author Unknown)
Tuesday, June 22, 2010
Introduction
Wow, it's been so long since I started a new blog =] The last blog I wrote was on Xanga, haha -- oh man, that makes me feel old =D
Welcome to my Ehlers-Danlos Syndrome blog ^_^
I have the Hypermobility type, with Classical features (skin and organ tissue problems). Thankfully, my heart is structurally okay, and I feel like I just missed the Titanic with that one, lol.
I live in Perth, Australia, which just happens to also be home to Dr. Kevin Murray, a fantastic rheumatologist who specialises in treating EDS. He diagnosed me when I was 17 and has been treating me ever since. I also see Natalie Bennett-Bremner, a physiotherapist who treats EDSers and REALLY knows her stuff. She held a seminar for medical professionals and sufferers in Sydney this month and the response so far has been awesome. Please look both of these people up if you're interested =]
At the moment, I'm recovering from knee surgery. Nearly 3 years ago, I fell while working at McDonald's and landed on my left knee, sending my kneecap half way up my thigh. I set it myself and my workplace handled it all really badly. It took them over 9 months to pay me my lost wages and their insurance company has been trying to get me to settle ever since. I'm absolutely not going to, since it took my (excellent) orthopedic surgeon, Anthony Geddes, all this time to decide on a lateral release with tibial tubercle transfer as the best option, after exhausting all other options, because of the risks involved -- along with the possibility that it may not even work.
So far, I'm healing well and the surgery was a complete success. He actually seemed suprised at how smoothly it went =D I've had a great deal of trouble with pain medication, as I'm allergic/intolerant to all the decent ones, including opiates and opioids. But I've found the pain very manageable. Recovery is slow and I've lost so much muscle in my left leg, I actually can't find it unless I tense like all hell and poke around for a while. But with such a great, EDS-friendly physio working with me, I know I'll get there, even if it does take me twice as long as it does a normal person, lol. The scars are already widening, only 6 weeks after surgery, but Natalie recommended some silicon pads that I can get from a hospital pharmacy, which will help to prevent that (note to self: for goodness sake, remember to get these!) and I've read about other EDSers having success with them =] Surgeons and doctors use them for patients with "difficult skin", as she put it =D
Anyway, my hands ae starting to rebel, so I shall wrap this up. Thanks for reading =]
<33 Kitty
Welcome to my Ehlers-Danlos Syndrome blog ^_^
I have the Hypermobility type, with Classical features (skin and organ tissue problems). Thankfully, my heart is structurally okay, and I feel like I just missed the Titanic with that one, lol.
I live in Perth, Australia, which just happens to also be home to Dr. Kevin Murray, a fantastic rheumatologist who specialises in treating EDS. He diagnosed me when I was 17 and has been treating me ever since. I also see Natalie Bennett-Bremner, a physiotherapist who treats EDSers and REALLY knows her stuff. She held a seminar for medical professionals and sufferers in Sydney this month and the response so far has been awesome. Please look both of these people up if you're interested =]
At the moment, I'm recovering from knee surgery. Nearly 3 years ago, I fell while working at McDonald's and landed on my left knee, sending my kneecap half way up my thigh. I set it myself and my workplace handled it all really badly. It took them over 9 months to pay me my lost wages and their insurance company has been trying to get me to settle ever since. I'm absolutely not going to, since it took my (excellent) orthopedic surgeon, Anthony Geddes, all this time to decide on a lateral release with tibial tubercle transfer as the best option, after exhausting all other options, because of the risks involved -- along with the possibility that it may not even work.
So far, I'm healing well and the surgery was a complete success. He actually seemed suprised at how smoothly it went =D I've had a great deal of trouble with pain medication, as I'm allergic/intolerant to all the decent ones, including opiates and opioids. But I've found the pain very manageable. Recovery is slow and I've lost so much muscle in my left leg, I actually can't find it unless I tense like all hell and poke around for a while. But with such a great, EDS-friendly physio working with me, I know I'll get there, even if it does take me twice as long as it does a normal person, lol. The scars are already widening, only 6 weeks after surgery, but Natalie recommended some silicon pads that I can get from a hospital pharmacy, which will help to prevent that (note to self: for goodness sake, remember to get these!) and I've read about other EDSers having success with them =] Surgeons and doctors use them for patients with "difficult skin", as she put it =D
Anyway, my hands ae starting to rebel, so I shall wrap this up. Thanks for reading =]
<33 Kitty
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