I was reading Laurie Edward's blog "A Chronic Dose: A Chronic Illness Blog" and found her post "On Work and Chronic Illness". In the post, she links to an article that I then read and excerpted from below.
"Women who are sick find themselves in a triple bind: unable to excel at their career because they are sick; unable to take good care of their health because they are working; unable to quit because they need the health insurance they can get only through a job." From "Ill in a Day's Work" by Donna Jackson Nakazawa
Wow, did that thought hit home! I work in a job, not a career. I'd love to go back to school to get a teaching certificate and Master's degree in Intercultural Education. The economy is the primary reason I am not moving forward with classes part time, but the ultimate issue holding me back is can I do it? Classes are not the problem; I worry about the teaching internship and student teaching a whole class. Tutoring and small groups are more my style but gotta jump through the hoops first. Then inertia seems to take over when I am not feeling good -- everything seems overwhelming and the daily grind at ye ole desk job is something I can always fall back on (helps that my boss lets me sleep in or work from home sometimes).
Just thinking of leaving this job sets off tons of stress. Yet working full time is painful. I think I mentioned in a previous post that my productivity at work is ~20% these days. I don't think I'd qualify for disability but my quality of life definitely suffers because I don't get enough rest.
I carry our health and dental insurance through work. My love is self-employed and he pays the majority of the big bills. He used to have his own health insurance but it was so expensive and he could get on my work policy for peanuts. It's the least I can do to handle our insurance and try to keep the house from complete disaster (easier said than done!).
Ever get the feeling that life is a trap? This point is where I have to give to God and trust that I will be where I am needed most. Sigh...
Thursday, February 26, 2009
Tuesday, February 24, 2009
End of February update
February is a short month to begin with but it just FLEW by!
I've been wanting to post but have had various reasons why that hasn't happened:
1) feel crummy - shoulder, feet, fatigue
2) brain fog is worse than usual - really can't concentrate or follow logical steps in completing tasks
3) work has been sapping all my energy
4) worked on a project for the EDNF
5) visited family two weekends in a row
6) feel crummy
Here are the topics I've wanted to post on but haven't had energy to:
1) no more tape for me
2) anxiety about shoulder surgery - how to avoid it
3) brain fog - depression? pain? Vit D? not anemia
4) summary of interesting article about changes in the brain from chronic pain
5) sad about not having my own child
6) thinking about the future - education, healing ministry, disability
I can't think of anything else at the moment. I just want to go home. It seems like I get maybe 2 productive hours out of the 8 at work these days. Not such a good average. Sigh.
Hugs to everyone I love and to those I've only just met.
I've been wanting to post but have had various reasons why that hasn't happened:
1) feel crummy - shoulder, feet, fatigue
2) brain fog is worse than usual - really can't concentrate or follow logical steps in completing tasks
3) work has been sapping all my energy
4) worked on a project for the EDNF
5) visited family two weekends in a row
6) feel crummy
Here are the topics I've wanted to post on but haven't had energy to:
1) no more tape for me
2) anxiety about shoulder surgery - how to avoid it
3) brain fog - depression? pain? Vit D? not anemia
4) summary of interesting article about changes in the brain from chronic pain
5) sad about not having my own child
6) thinking about the future - education, healing ministry, disability
I can't think of anything else at the moment. I just want to go home. It seems like I get maybe 2 productive hours out of the 8 at work these days. Not such a good average. Sigh.
Hugs to everyone I love and to those I've only just met.
Wednesday, January 28, 2009
The Stick
I just bought the coolest tool for tight muscles!!! It's called The Stick. In my last post, I explained a bit about hypertonic muscles, where some of my muscles are so tight that they limit mobility. My hypertonic muscles are in my neck, my calves, and my hamstrings. I can still touch the floor despite very tight calves and hamstrings though!
In PT a while back, I was introduced to The Stick to help calm the hypertonic muscles in my leg that limit mobility in a bad way. I was hooked but didn't get to use it again after that. Then my PT used the Stick again last week to help relax my trapezius muscles and their nasty trigger points. (BTW, a great book on trigger points that you can use at home is called The Trigger Point Therapy Workbook) I don't typically buy something like this unless I feel a true difference with it and I've wanted it for a long time, so I got it the other day. I worked on my legs for a while (20 light rolls per segment) on Sunday and felt some relief. However, I also seem to have overworked an area behind my right knee! It feels bruised but there isn't one. Seems I rolled over some nasty points on a tendon or ligament. Felt painfully good at the time I worked on it, but now I know to take it easy! Can't figure out how to work on my traps muscles without help though. I'm hoping that consistent work on my legs at home will help with some of the puffiness and venous insufficiency/blood pooling issues I have from squishy tissues. Get some qi moving!
In PT a while back, I was introduced to The Stick to help calm the hypertonic muscles in my leg that limit mobility in a bad way. I was hooked but didn't get to use it again after that. Then my PT used the Stick again last week to help relax my trapezius muscles and their nasty trigger points. (BTW, a great book on trigger points that you can use at home is called The Trigger Point Therapy Workbook) I don't typically buy something like this unless I feel a true difference with it and I've wanted it for a long time, so I got it the other day. I worked on my legs for a while (20 light rolls per segment) on Sunday and felt some relief. However, I also seem to have overworked an area behind my right knee! It feels bruised but there isn't one. Seems I rolled over some nasty points on a tendon or ligament. Felt painfully good at the time I worked on it, but now I know to take it easy! Can't figure out how to work on my traps muscles without help though. I'm hoping that consistent work on my legs at home will help with some of the puffiness and venous insufficiency/blood pooling issues I have from squishy tissues. Get some qi moving!
Thursday, January 22, 2009
Shoulder/neck stuff - taping and mobility
Taping #3 definitely helped a lot with my shoulder instability. Apparently my left shoulder blade deviates from the spine more so than the right one and that instability contributes to problems with my shoulder itself. I can't do any more taping for a while because the skin on my shoulder is raw to the point of peeling. I think it's been two weeks now since I took Tape #3 off and my skin is still irritated. I definitely don't recommend taping for some one with classic type unless the person is very specialied in tissue fragility! Gotta love EDS!
We're working on shoulder stabilization exercises in PT. The trick is to do so without engaging the neck muscles - see below!
My PT has been doing some intense work on my neck due to its noticeable lack of mobility - who'd a thunk?! After treatments of deep massage on my trapezius muscles (ones running across base of neck out to shoulders), I tend to be really spaced out and a bit confused for the rest of the day (or a few days thereafter). I came home early from work the other day because I was sooo fatigued and couldn't concentrate (more so than normal EDS); just wanted to sleep for a few. I laid down on the couch, got comfortable and didn't wake up until my husband came home 2 hours later. I was really confused about dinner and couldn't figure out how to put things together. It was very strange. This all has something to do with the nerves being stimulated in ways they haven't been in decades! Not kidding - that's how bad the hypertonia is!
We've been doing some neat exercises on the floor to help my core and shoulder muscles without engaging my neck muscles in a way that causes problems. I basically roll/flop around on the mat (floor mat, not my PT Mat)! I have to go from facing up to facing down without moving either my upper body or my lower body. It is sooo hard and I have much more trouble rolling my upper body from left to right due to weakness in that sohoulder. You'd think rolling on the floor would be easy but trying to use only the upper body muscles or lower body muscles to move is sooo darn hard! Wish I could describe this exercise better.
We're working on shoulder stabilization exercises in PT. The trick is to do so without engaging the neck muscles - see below!
My PT has been doing some intense work on my neck due to its noticeable lack of mobility - who'd a thunk?! After treatments of deep massage on my trapezius muscles (ones running across base of neck out to shoulders), I tend to be really spaced out and a bit confused for the rest of the day (or a few days thereafter). I came home early from work the other day because I was sooo fatigued and couldn't concentrate (more so than normal EDS); just wanted to sleep for a few. I laid down on the couch, got comfortable and didn't wake up until my husband came home 2 hours later. I was really confused about dinner and couldn't figure out how to put things together. It was very strange. This all has something to do with the nerves being stimulated in ways they haven't been in decades! Not kidding - that's how bad the hypertonia is!
We've been doing some neat exercises on the floor to help my core and shoulder muscles without engaging my neck muscles in a way that causes problems. I basically roll/flop around on the mat (floor mat, not my PT Mat)! I have to go from facing up to facing down without moving either my upper body or my lower body. It is sooo hard and I have much more trouble rolling my upper body from left to right due to weakness in that sohoulder. You'd think rolling on the floor would be easy but trying to use only the upper body muscles or lower body muscles to move is sooo darn hard! Wish I could describe this exercise better.
Tuesday, January 13, 2009
Adventures in Taping #3
I took my 2nd round of tape off two days ago. My shoulder was a bit less unstable but as soon as I took the tape off, my muscles running along the scapula up to the neck went into spasm.
Today was PT and Mat had been at a seminar over the weekend. I love this PT place because they are big on Continuing Education. It's fun to see them trying out the new techniques and assessment tools they learn. So I got a functional assessment first thing. He had me bend and move in certain ways and actually looked for where I was tight/restricted, not where I was too flexible. Always knew my hamstrings and calves were tight and my neck is chronic, but I didn't know that my neck stiffness is worse than the average person.
The seminar instructor said that in order to deal with instability issues, you have to deal with mobility issues first. We had not looked at me as having mobility issues other than HYPERmobility. Now that it is obvious my neck is very problematic, my PT is going after that problem. He also thinks that what we do with the neck might help with tightness further down my body (legs). This idea comes from over-stimulation of the nerves in the neck area taking over the impulses that are supposed to go to the legs, I think.
We proceeded from the assessment to the table for more taping. Interestingly, he taped the areas I had felt needed taping. His thinking is that the shoulder instability is actually from problems with the shoulder blade being too loose. I have an unusually small set of wings, I mean scapula, but plenty of room for big muscle spasms! He taped a right triangle on my back. A length of tape from the top of my shoulder almost to my C7/T1 vertebrae, 90 degrees to a length of tape running straight down my back alongside my spine. The connector stretches from the top of my shoulder, across my scapula, and connects with the other tape at about T11.
The first try didn't last more than 20 minutes before it pulled off from the bottom (closest to my butt). Fortunately, I was still at the gym and he was free for a few minutes to re-tape. This one is still holding.
I have muscle spasms but not as bad as before AND my shoulder feels stable. The added bonus is that the tape pulls my posture into better alignment and I can breathe! The true test is how I sleep tonight.
More tomorrow!
Today was PT and Mat had been at a seminar over the weekend. I love this PT place because they are big on Continuing Education. It's fun to see them trying out the new techniques and assessment tools they learn. So I got a functional assessment first thing. He had me bend and move in certain ways and actually looked for where I was tight/restricted, not where I was too flexible. Always knew my hamstrings and calves were tight and my neck is chronic, but I didn't know that my neck stiffness is worse than the average person.
The seminar instructor said that in order to deal with instability issues, you have to deal with mobility issues first. We had not looked at me as having mobility issues other than HYPERmobility. Now that it is obvious my neck is very problematic, my PT is going after that problem. He also thinks that what we do with the neck might help with tightness further down my body (legs). This idea comes from over-stimulation of the nerves in the neck area taking over the impulses that are supposed to go to the legs, I think.
We proceeded from the assessment to the table for more taping. Interestingly, he taped the areas I had felt needed taping. His thinking is that the shoulder instability is actually from problems with the shoulder blade being too loose. I have an unusually small set of wings, I mean scapula, but plenty of room for big muscle spasms! He taped a right triangle on my back. A length of tape from the top of my shoulder almost to my C7/T1 vertebrae, 90 degrees to a length of tape running straight down my back alongside my spine. The connector stretches from the top of my shoulder, across my scapula, and connects with the other tape at about T11.
The first try didn't last more than 20 minutes before it pulled off from the bottom (closest to my butt). Fortunately, I was still at the gym and he was free for a few minutes to re-tape. This one is still holding.
I have muscle spasms but not as bad as before AND my shoulder feels stable. The added bonus is that the tape pulls my posture into better alignment and I can breathe! The true test is how I sleep tonight.
More tomorrow!
Saturday, January 10, 2009
Adventures in Joint Taping #2
I'm avoiding the tons of housework I have to do for overnight guests arriving later today. I'm not feeling good and waiting for my meds to kick in. Perfect time for a post!
I went to see my PT on Thursday, two days after the first shoulder taping. The 1st tape stuck really well and I had only taken it off that morning in the shower. I learned a trick too - instead of pulling the tape up, which pulls my skin up, I start the tape by pulling up but then push the skin down to release it from the tape. Both less painful and less traumatic to my skin. My skin did surprisingly well.
I explained to Mat that the tape helped a lot but one of the strips (in front) could have been tighter. I also mentioned that it felt like my shoulder blade was pulling up and my shoulder was falling forward - would it make sense to tape my shoulder blade down too. He said my feedback made perfect sense and we'd proceed with taping the shoulder again that day. So, back to the ultrasound (the thing turned off for a few minutes making the 7 minute session into a 12 min one!), e-stim and ice. Taping occurred just after the ultrasound.
Mat put tape in the same two places as before but tighter and then added a strip that went diagonal from my shoulder all the was past my shoulder blade almost to my spine. It felt weird at first but definitely provided the stability I was lacking last time.
Next was the e-stim and ice. I had the tech turn the stim up higher this time. While I was lying there, I realized why one spot where the sticky "nipple" was placed last time hurt so much - it was directly on an acupuncture spot! Lung 1. They didn't put the lead on the same place this time so no pain. I got to relax there for 15 minutes. My neck hurt and I had to ask for a rolled towel to put under it, despite the pillow I was on. Much better.
Two days later and I feel so much better. My taped shoulder has brought my arm up about 1/2 inch! I definitely feel the squishiness of the right shoulder now, though that one is not as problematic. I think now that my hormones are shifting back to normal, my left shoulder should tighten up again. I'm not interested in pulling this tape off so I'll wait until it starts coming off of its own accord. Yes, I can shower with it - I'm not going to be stinky just for some tape! :)
I went to see my PT on Thursday, two days after the first shoulder taping. The 1st tape stuck really well and I had only taken it off that morning in the shower. I learned a trick too - instead of pulling the tape up, which pulls my skin up, I start the tape by pulling up but then push the skin down to release it from the tape. Both less painful and less traumatic to my skin. My skin did surprisingly well.
I explained to Mat that the tape helped a lot but one of the strips (in front) could have been tighter. I also mentioned that it felt like my shoulder blade was pulling up and my shoulder was falling forward - would it make sense to tape my shoulder blade down too. He said my feedback made perfect sense and we'd proceed with taping the shoulder again that day. So, back to the ultrasound (the thing turned off for a few minutes making the 7 minute session into a 12 min one!), e-stim and ice. Taping occurred just after the ultrasound.
Mat put tape in the same two places as before but tighter and then added a strip that went diagonal from my shoulder all the was past my shoulder blade almost to my spine. It felt weird at first but definitely provided the stability I was lacking last time.
Next was the e-stim and ice. I had the tech turn the stim up higher this time. While I was lying there, I realized why one spot where the sticky "nipple" was placed last time hurt so much - it was directly on an acupuncture spot! Lung 1. They didn't put the lead on the same place this time so no pain. I got to relax there for 15 minutes. My neck hurt and I had to ask for a rolled towel to put under it, despite the pillow I was on. Much better.
Two days later and I feel so much better. My taped shoulder has brought my arm up about 1/2 inch! I definitely feel the squishiness of the right shoulder now, though that one is not as problematic. I think now that my hormones are shifting back to normal, my left shoulder should tighten up again. I'm not interested in pulling this tape off so I'll wait until it starts coming off of its own accord. Yes, I can shower with it - I'm not going to be stinky just for some tape! :)
Tuesday, January 6, 2009
Two useful blogs I really like
This is going to be a short post because it is late and I have to get up early. I just wanted to note that I have discovered two blogs I find incredibly useful and so relevant to my life right now.
In sickness and in health: A place for couples dealing with illness: Just exactly what the blog title is. I like the authors style, and her insight into couples' interactions when chronic illness is in the picture is poignant. She is hosting the upcoming Grand Rounds and her topic is connections. I'm thinking a lot about EDS-related "loose connections" at the moment with my joints, but connections with friends, social activities and other stuff in my life has really changed since pain has become a daily visitor.
How to Cope with Pain: Again, title and subject are one. Insightful, interactive, proactive, and engaging blog. She tends to have really interesting links as well.
I want to write more but I'm too tired to think. You'll just have to go to these blogs and find out for yourself what they are all about. TTFN!
In sickness and in health: A place for couples dealing with illness: Just exactly what the blog title is. I like the authors style, and her insight into couples' interactions when chronic illness is in the picture is poignant. She is hosting the upcoming Grand Rounds and her topic is connections. I'm thinking a lot about EDS-related "loose connections" at the moment with my joints, but connections with friends, social activities and other stuff in my life has really changed since pain has become a daily visitor.
How to Cope with Pain: Again, title and subject are one. Insightful, interactive, proactive, and engaging blog. She tends to have really interesting links as well.
I want to write more but I'm too tired to think. You'll just have to go to these blogs and find out for yourself what they are all about. TTFN!
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