That's how the last few months have been when it comes to writing blog posts. SOOOO much has happened since my last post that it feels overwhelming to edit what is worthwhile posting.
Just to get rolling again, I thought perhaps I could point out the "collection" of blogs I follow (over to the right -->). I intentionally look for blogs related to Ehlers-Danlos Syndrome and Hypermobility Syndrome. I also like to add other blogs I think people would find interesting or useful. There is no way I can possibly read all the entries people write, though I tried at first when I'd just gotten started, but maybe you'd like to add to your reading list.
When I started blogging, one of the things I found so helpful in other peoples' blogs was the lists of blogs they read. I've met some EDS friends through their blogs; I've heard perspectives on the syndrome that I might not have considered; and I hope that maybe someone can use my list to make their own connections. It seems that there are never too many opportunities to meet others with Ehlers-Danlos, or commiserate with chronic pain sufferers, or learn about techniques to keep your marriage and friendships alive when you feel like crap.
So, I invite you to look around and see who you find, what you learn, and if it makes the time between doses of pain meds go a little faster.
Finally, if you have any blogs you'd like to suggest, drop me a line.
Showing posts with label Hypermobility. Show all posts
Showing posts with label Hypermobility. Show all posts
Monday, February 1, 2010
Monday, September 7, 2009
30 Things About My Invisible Illness You May Not Know: Ehlers-Danlos Syndrome
National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.
30 Things About My Invisible Illness You May Not Know:
1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: birth, though the pain aspect didn't start until my teens.
4. The biggest adjustment I’ve had to make is: to my expectations of myself and what I can do with my husband, around the house, with my friends, for a career...
5. Most people assume: I'm "normal" (read: not in pain, exhausted, etc)
6. The hardest parts about mornings are: waking up unrefreshed. Putting my painful feet on the ground. Wondering if any of my joints are going to act up.
7. My favorite medical TV show is: House, MD for the humor (the medical stuff is not always accurate though)
8. A gadget I couldn’t live without is: how do I choose? I think it would have to be my car.
9. The hardest part about nights is: knowing I am not going to get enough refreshing sleep.
10. Each day I take ~15 pills & vitamins.
11. Regarding alternative treatments I: have had various results. I believe they should be complementary to traditional medical treatment.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, but my snarky answer is to say neither!
13. Regarding working and career: On a good day, I hope to go back to school for a Master's in teaching or acupuncture but I know there will be limitations on what I can do after graduation - like I can't handle a large class of students and would probably have to do special ed or tutor. I can never be self-employed and I don't think I can work full time.
On a bad day, I don't think anything is possible and just want to hide under the covers.
14. People would be surprised to know: I used to love middle eastern dance.
15. The hardest thing to accept about my new reality has been: the effect it has had on my marriage. I was diagnosed 6 weeks after our wedding and I've since had more pain and joint problems than ever before. I feel like I've let my husband down, though I know that is not true.
16. Something I never thought I could do with my illness that I did was: create realistic expectations for my work performance with my boss with no repercussions. Help others with the disorder.
17. The commercials about my illness: what commercials?!
18. Something I really miss doing since I was diagnosed is: dancing.
19. It was really hard to have to give up: dancing. Cute shoes (just kidding!).
20. A new hobby I have taken up since my diagnosis is: blogging and being proactive with the EDNF.
21. If I could have one day of feeling normal again I would: spend the day in bed with my hubby.
22. My illness has taught me: to listen to my body. Also, to know who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is: "You are too sensitive."
24. But I love it when people: let me help out with projects that utilize my strengths without taxing me - I can be useful, creative, and maintain my boundaries. (I also have to say that I love it when people accept that I need to go home and sleep all day)
25. My favorite motto, scripture, quote that gets me through tough times is: "I love you."
26. When someone is diagnosed I’d like to tell them: it's not all in your head. AND That there is no such thing as an EDS specialist MD, you are the specialist who needs to educate your health care professionals (educational material and support are at www.EDNF.org.
27. Something that has surprised me about living with an illness is: that I finally have a name that explains why I've had the problems I've had forever, and that I am relieved to have this diagnosis.
28. The nicest thing someone did for me when I wasn’t feeling well was: make dinner and do the dishes! On a medical level, was to believe that I was in pain and work with me to find a pain med that helped take the edge off.
29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think.
30. The fact that you read this list makes me feel: like one more person has learned that Ehlers-Danlos Syndrome exists.
Do you want to write your own "30 things..."?
Get the scoop at invisibleillnessweek.com!
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
30 Things About My Invisible Illness You May Not Know:
1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: birth, though the pain aspect didn't start until my teens.
4. The biggest adjustment I’ve had to make is: to my expectations of myself and what I can do with my husband, around the house, with my friends, for a career...
5. Most people assume: I'm "normal" (read: not in pain, exhausted, etc)
6. The hardest parts about mornings are: waking up unrefreshed. Putting my painful feet on the ground. Wondering if any of my joints are going to act up.
7. My favorite medical TV show is: House, MD for the humor (the medical stuff is not always accurate though)
8. A gadget I couldn’t live without is: how do I choose? I think it would have to be my car.
9. The hardest part about nights is: knowing I am not going to get enough refreshing sleep.
10. Each day I take ~15 pills & vitamins.
11. Regarding alternative treatments I: have had various results. I believe they should be complementary to traditional medical treatment.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, but my snarky answer is to say neither!
13. Regarding working and career: On a good day, I hope to go back to school for a Master's in teaching or acupuncture but I know there will be limitations on what I can do after graduation - like I can't handle a large class of students and would probably have to do special ed or tutor. I can never be self-employed and I don't think I can work full time.
On a bad day, I don't think anything is possible and just want to hide under the covers.
14. People would be surprised to know: I used to love middle eastern dance.
15. The hardest thing to accept about my new reality has been: the effect it has had on my marriage. I was diagnosed 6 weeks after our wedding and I've since had more pain and joint problems than ever before. I feel like I've let my husband down, though I know that is not true.
16. Something I never thought I could do with my illness that I did was: create realistic expectations for my work performance with my boss with no repercussions. Help others with the disorder.
17. The commercials about my illness: what commercials?!
18. Something I really miss doing since I was diagnosed is: dancing.
19. It was really hard to have to give up: dancing. Cute shoes (just kidding!).
20. A new hobby I have taken up since my diagnosis is: blogging and being proactive with the EDNF.
21. If I could have one day of feeling normal again I would: spend the day in bed with my hubby.
22. My illness has taught me: to listen to my body. Also, to know who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is: "You are too sensitive."
24. But I love it when people: let me help out with projects that utilize my strengths without taxing me - I can be useful, creative, and maintain my boundaries. (I also have to say that I love it when people accept that I need to go home and sleep all day)
25. My favorite motto, scripture, quote that gets me through tough times is: "I love you."
26. When someone is diagnosed I’d like to tell them: it's not all in your head. AND That there is no such thing as an EDS specialist MD, you are the specialist who needs to educate your health care professionals (educational material and support are at www.EDNF.org.
27. Something that has surprised me about living with an illness is: that I finally have a name that explains why I've had the problems I've had forever, and that I am relieved to have this diagnosis.
28. The nicest thing someone did for me when I wasn’t feeling well was: make dinner and do the dishes! On a medical level, was to believe that I was in pain and work with me to find a pain med that helped take the edge off.
29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think.
30. The fact that you read this list makes me feel: like one more person has learned that Ehlers-Danlos Syndrome exists.
Do you want to write your own "30 things..."?
Get the scoop at invisibleillnessweek.com!
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Read Nkolika's blog - "An Artist's Musings: How flexible are you?"
I know I haven't been too active here but life has been a bit chaotic - most of it non-EDS related.
I found this informative post from a lovely woman - an artist and MD - in Africa. She found a video on "Snake Woman" (cringe worthy!) and provides a summary of EDS and hypermobility. She is also a very good artist (check out the link to her amazingly inexpensive artwork on Etsy).
Check out Nkolika's post here and watch the video.
An Artist's Musings: How flexible are you?
(Also read her other posts.)
I found this informative post from a lovely woman - an artist and MD - in Africa. She found a video on "Snake Woman" (cringe worthy!) and provides a summary of EDS and hypermobility. She is also a very good artist (check out the link to her amazingly inexpensive artwork on Etsy).
Check out Nkolika's post here and watch the video.
An Artist's Musings: How flexible are you?
(Also read her other posts.)
Tuesday, January 6, 2009
Muscle taping for instability
My first experience with taping a joint to keep it in place has been interesting thus far. My left shoulder, the one I dislocated two years ago, has been bothering me for a couple of months and got progressively worse over the holidays. For the last several days, I've been taking my Aleve/Tramadol mix around the clock to manage the pain. It feels like my arm wants to fall out of the shoulder socket if I let it hang.
So, I went in to PT today and had to tell him I couldn't do my usual workout. We've gotten into a good routine over the last year and I am to the point where I am in less pain and feel stronger/more stable now than before working with Mat. He is the first PT who a) hasn't hurt me during sessions and b) hasn't given up when I have flares that take me out of commission on occasion. I am very grateful to have been directed to this particularly good PT who understands that hypermobility needs stability and slow strengthening, no stretching and no major weights right away.
Anyway, so Mat is good when I have something out of whack because we spend the whole session dealing with getting inflammation/pain under control. Today is the first time at PT that my shoulder has been so painful I was close to tears. He did an assessment, which was not fun but gave him an idea of what muscle/area needed the most attention. He said something about the 5th rotator cuff muscle? The gleno-somethingorother attachment point. I laid down on the massage/treatment table for ultrasound. He noted that I have a sulcus, which is when the arm (humerus) separates a bit from under the glenoid (bone above the shoulder) creating a bit of a groove between. This sulcus can be an indication of instability.
After the exam and ultrasound, Mat got down to taping my shoulder. He didn't use "kinesiotape" but some heavy duty flesh-colored tape. Of course he had to put a less sticky layer underneath to protect my skin but we'll see what happens when I try to take the tape off. (I didn't have good fortune when I had my heart monitor for 24 hours and had to take the circle things (look like nipples!) off. Ouch and nasty skin afterwards. I had a round patch of raw skin just center of where a v-neck shirt shows the chest!) I had to hold my arm in such a way that I could push my shoulder into place while he put the tape on - the point being that the tape would hold my joint together when I let gravity pull on my arm. It worked! I felt relief right away and this suprised me most when I laid down on the table again for an ice and "stim" session. I know my shoulder can separate when I am sleeping but this taping method showed me how much my shoulder moves around not just when I am upright.
The PT assistant put more nipples and leads on points around my shoulder and new tape. These connected to a machine that sends a current to the leads. They slowly turn the power up until you are uncomfortable (which can feel like bees stinging) and then back off until you are comfortable with the tingling sensation. I guess the stim is supposed to help calm the muscles? Then he packed my shoulder in ice while I was laying there. I could have fallen asleep.
I've had pain off and on since the session earlier today but the taping has helped overall. Mat says I can leave the tape on up to 24 hours. I am accompanying hubby on a business luncheon tomorrow in Arizona so I had to think about what I am wearing so I can keep my tape on! I wish I had known about this technique sooner, but I guess that issue of "sooner" is going to have it's own post sometime since my whole life with EDS has been about "if only sooner..."
Can you be a tape junkie? I think I could tape up so many body parts right now! Everything feels like it wants to go in different directions these days. At least hubby feels like crap right now too, so I don't feel too bad for being a bit grumpy in pain. But truly, I am amazed that something as simple as tape can make a difference! I'm hooked.
So, I went in to PT today and had to tell him I couldn't do my usual workout. We've gotten into a good routine over the last year and I am to the point where I am in less pain and feel stronger/more stable now than before working with Mat. He is the first PT who a) hasn't hurt me during sessions and b) hasn't given up when I have flares that take me out of commission on occasion. I am very grateful to have been directed to this particularly good PT who understands that hypermobility needs stability and slow strengthening, no stretching and no major weights right away.
Anyway, so Mat is good when I have something out of whack because we spend the whole session dealing with getting inflammation/pain under control. Today is the first time at PT that my shoulder has been so painful I was close to tears. He did an assessment, which was not fun but gave him an idea of what muscle/area needed the most attention. He said something about the 5th rotator cuff muscle? The gleno-somethingorother attachment point. I laid down on the massage/treatment table for ultrasound. He noted that I have a sulcus, which is when the arm (humerus) separates a bit from under the glenoid (bone above the shoulder) creating a bit of a groove between. This sulcus can be an indication of instability.
After the exam and ultrasound, Mat got down to taping my shoulder. He didn't use "kinesiotape" but some heavy duty flesh-colored tape. Of course he had to put a less sticky layer underneath to protect my skin but we'll see what happens when I try to take the tape off. (I didn't have good fortune when I had my heart monitor for 24 hours and had to take the circle things (look like nipples!) off. Ouch and nasty skin afterwards. I had a round patch of raw skin just center of where a v-neck shirt shows the chest!) I had to hold my arm in such a way that I could push my shoulder into place while he put the tape on - the point being that the tape would hold my joint together when I let gravity pull on my arm. It worked! I felt relief right away and this suprised me most when I laid down on the table again for an ice and "stim" session. I know my shoulder can separate when I am sleeping but this taping method showed me how much my shoulder moves around not just when I am upright.
The PT assistant put more nipples and leads on points around my shoulder and new tape. These connected to a machine that sends a current to the leads. They slowly turn the power up until you are uncomfortable (which can feel like bees stinging) and then back off until you are comfortable with the tingling sensation. I guess the stim is supposed to help calm the muscles? Then he packed my shoulder in ice while I was laying there. I could have fallen asleep.
I've had pain off and on since the session earlier today but the taping has helped overall. Mat says I can leave the tape on up to 24 hours. I am accompanying hubby on a business luncheon tomorrow in Arizona so I had to think about what I am wearing so I can keep my tape on! I wish I had known about this technique sooner, but I guess that issue of "sooner" is going to have it's own post sometime since my whole life with EDS has been about "if only sooner..."
Can you be a tape junkie? I think I could tape up so many body parts right now! Everything feels like it wants to go in different directions these days. At least hubby feels like crap right now too, so I don't feel too bad for being a bit grumpy in pain. But truly, I am amazed that something as simple as tape can make a difference! I'm hooked.
Sunday, January 4, 2009
Purpose for posting
I've never been one for keeping journals but I am hoping I'll be good with this blog. I suppose I need a purpose for writing to stay interested so I've decided to use my Ehlers-Danlos Syndrome (EDS) diagnosis as a reason to post regularly. One of my big interests is in current research on EDS and I hope to provide snippets from articles I read over time.
What is Ehlers-Danlos Syndrome?
It's a genetic disorder (born with it) that affects the glue holding our bodies together. Collagen, that molecular glue, is defective in those with EDS so we have more elasticity and less strength in our connective tissue (tendons and ligaments primarily). The most basic symptoms common to every one with EDS are loose (hypermobile) joints, stretchy skin (usually soft), and fragile tissues. There are six main types of EDS.
What type of EDS do I have?
I have hypermobility type. My joints are extra stretchy and can go beyond the normal range of movement. Many of my joints don't like to stay in place; they don't fully dislocate but partially dislocating can be really painful too. I dislocated my left shoulder two winters ago and have recurrent pain there. I have very soft skin, look younger than my age, and I bruise very easily. I'll go into more details over time but a great resource is the Ehlers-Danlos National Foundation (EDNF). I might shorten my type of EDS to HEDS with the H for hypermobility.
What is Ehlers-Danlos Syndrome?
It's a genetic disorder (born with it) that affects the glue holding our bodies together. Collagen, that molecular glue, is defective in those with EDS so we have more elasticity and less strength in our connective tissue (tendons and ligaments primarily). The most basic symptoms common to every one with EDS are loose (hypermobile) joints, stretchy skin (usually soft), and fragile tissues. There are six main types of EDS.
What type of EDS do I have?
I have hypermobility type. My joints are extra stretchy and can go beyond the normal range of movement. Many of my joints don't like to stay in place; they don't fully dislocate but partially dislocating can be really painful too. I dislocated my left shoulder two winters ago and have recurrent pain there. I have very soft skin, look younger than my age, and I bruise very easily. I'll go into more details over time but a great resource is the Ehlers-Danlos National Foundation (EDNF). I might shorten my type of EDS to HEDS with the H for hypermobility.
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