I am still processing the results of my latest orthopedic appointment emotionally but mentally know what has to happen. The little kid inside me, however, swings back and forth between, "this needs to happen," and, "NO!" I'm about to send my emotional self to her room to finish out the tantrum.
The latest appointment was to go over the findings of a series of x-rays. There is a little osteoarthritis setting into my shoulder; not surprised. My short leg is 14mm shorter than my long leg; hasn't changed. My spine has become unstable. WHAT?!? Yes, unstable. After over 2 decades of stability it is collapsing. Gravity is no longer my friend. I am an adult staring into the abyss of corrective spinal surgery. I hated hearing the words Harrington Rods spoken aloud after so many years of believing I escaped their cold surgical steel clutches.
But. mentally, I knew this was coming. I could feel it in the increasing pain and unidentified anxiety. The strange "you are too young for this" diagnosis of bursitis just 3 weeks ago that prompted me to demand a new spinal evaluation. The knowledge that gravity works and it was only a matter of time before the curves increased. The nurse who laughingly refused to remeasure my height last year when it was 1/2 inch shorter than I knew it should be. I knew. But I refused to accept.
Now, I have no choice. My curvatures are each over 60 degrees. This is no longer a case of avoiding surgery but needing to embrace it before my spine kills me. Some of my internal organs are in danger of being damaged. There is a potential I will break a rib on my hip bone - good thing I have strong bones! Straightening my spine will also eliminate pain, correct problems with my hips and shoulder, and on the petty side I'll be MUCH taller (at least 3 inches) and no longer be 5 pounds overweight for my height. Hey, I have to find a ray of sunshine in this somewhere :)
Saturday, September 3, 2011
Saturday, August 27, 2011
Pain Management Program
This spring, at my specialist's recommendation, I enrolled in a pain management program through my local hospital's wellness center. My requirements were that it would be non-invasive and limited pharmaceuticals - I admit I was very surprised to find that at a traditional hospital!
The program was supposed to start with an informational meeting, but due to time constraints and because I want to keep working and not threaten my employment status with frequent absenteeism I started with an orthopedic evaluation and physical therapy. The evaluation found bursitis in one hip which was causing a new onset of pain and weakness and, when my shoulder was moved the way he wanted, limited mobility in my previously "worked on" shoulder. Of course, if allowed to move the shoulder "my" way it has hypermobility. PT has focused on these two and not, as I wanted, all-over body strengthening to help manage the constant discomfort.
I still haven't had the informational meeting with the head of the program, but found out last week that was due to a hiking disaster she experienced and the program is slowly changing hands. Thus, I am fighting for my needs with the feeling of little support other than my family.
I pushed and was sent to a second orthopedist who is re-evaluating my short leg and scoliosis. If these have changed at all (which is likely, it has been about a decade since last evaluated but at that point both had been stable for about 15 years) then they could be the cause of the bursitis, limited shoulder mobility, and possibly other areas of pain. Won't know more about this until early September.
My goal with all of this is to reduce the amount of daily pain and numerous subluxations/dislocations I experience. I want to be able to keep on top of it and not be constantly surprised by new problems. I love my career, but know EDS is slowly making it difficult to work everyday and be effective at what I do. My hope was for the pain management program to help me organize it all and figure out who and what would help the best, but so far it is, yet again, me figuring it all out with almost no knowledgeable help from the medical community. This is extremely frustrating and I sometimes want to just give up, but I am still too stuburn to admit I am disabled.
The program was supposed to start with an informational meeting, but due to time constraints and because I want to keep working and not threaten my employment status with frequent absenteeism I started with an orthopedic evaluation and physical therapy. The evaluation found bursitis in one hip which was causing a new onset of pain and weakness and, when my shoulder was moved the way he wanted, limited mobility in my previously "worked on" shoulder. Of course, if allowed to move the shoulder "my" way it has hypermobility. PT has focused on these two and not, as I wanted, all-over body strengthening to help manage the constant discomfort.
I still haven't had the informational meeting with the head of the program, but found out last week that was due to a hiking disaster she experienced and the program is slowly changing hands. Thus, I am fighting for my needs with the feeling of little support other than my family.
I pushed and was sent to a second orthopedist who is re-evaluating my short leg and scoliosis. If these have changed at all (which is likely, it has been about a decade since last evaluated but at that point both had been stable for about 15 years) then they could be the cause of the bursitis, limited shoulder mobility, and possibly other areas of pain. Won't know more about this until early September.
My goal with all of this is to reduce the amount of daily pain and numerous subluxations/dislocations I experience. I want to be able to keep on top of it and not be constantly surprised by new problems. I love my career, but know EDS is slowly making it difficult to work everyday and be effective at what I do. My hope was for the pain management program to help me organize it all and figure out who and what would help the best, but so far it is, yet again, me figuring it all out with almost no knowledgeable help from the medical community. This is extremely frustrating and I sometimes want to just give up, but I am still too stuburn to admit I am disabled.
Thursday, June 10, 2010
Summer is My Favorite Season
I always look forward to summer. The flowers are blooming, trees fully leaved, and the days nice and warm. Perhaps it is the warmth I look forward to the most.
Heat helps my joints feel better. The lack of shivering also gives my muscles a chance to heal from the damage of winter. I can exercise more because I feel better, which, in turn, makes me feel even better.
I haven't had a major joint episode since my elbow last year, though my left shoulder gave me a scare about a month ago. Luckily, since it is getting warmer, I can exercise the joint more and strengthen it before I have a full dislocation.
I'm looking forward to my next visit with my EDS specialist. I have several new oddities that I want to discus with him to find out if they are EDS related. One is an occasional extreme headache, not a migraine but seriously painful, that is occurring about once every 2 months. The other is a bizarre hive-like rash that will occasionally appear and disappear a few hours later. I am wondering if my skin allergies are related to EDS (since my skin is very much a result of EDS) and if there is anything I can do besides live in a hypoallergenic bubble :)
Now, to go enjoy exercising in the warming weather and get these joints of mine ready for next winter!
Heat helps my joints feel better. The lack of shivering also gives my muscles a chance to heal from the damage of winter. I can exercise more because I feel better, which, in turn, makes me feel even better.
I haven't had a major joint episode since my elbow last year, though my left shoulder gave me a scare about a month ago. Luckily, since it is getting warmer, I can exercise the joint more and strengthen it before I have a full dislocation.
I'm looking forward to my next visit with my EDS specialist. I have several new oddities that I want to discus with him to find out if they are EDS related. One is an occasional extreme headache, not a migraine but seriously painful, that is occurring about once every 2 months. The other is a bizarre hive-like rash that will occasionally appear and disappear a few hours later. I am wondering if my skin allergies are related to EDS (since my skin is very much a result of EDS) and if there is anything I can do besides live in a hypoallergenic bubble :)
Now, to go enjoy exercising in the warming weather and get these joints of mine ready for next winter!
Wednesday, April 29, 2009
Elbow Dislocation
Ouch!
I've dislocated ankles, wrists and even a hip before. My mom even referred to one shoulder as "permanently dislocated." But this is the first time it has ever hurt THIS much!!
Looks like what happened is I weakened the elbow doing yard work, such is the nature of spring. Then I made the mistake of reaching for something on the table and was hit with an amazing wave of pain! I iced it, rested it, checked it out and knew it had dislocated and managed to reset it a day later, but the pain wouldn't go away.
After another day I called my Dr, and he sent me to an orthopedist. The ortho found that I had reset the elbow but managed to seriously pull the muscles and tendons around it until the elbow was so weak it keeps slipping - hence the continual pain.
He wrapped it and had me measured for yet another brace. This time it is a compression brace, from the same company that makes the shoulder brace I have had wonderful luck with. I'll wear the brace (once it arrives) for several weeks so the elbow can start healing, then begin yet another set of strengthening exercises. At least it wasn't too serious (I was afraid I was finally facing surgery and pins - pushed that one off a while longer :-) )
I've dislocated ankles, wrists and even a hip before. My mom even referred to one shoulder as "permanently dislocated." But this is the first time it has ever hurt THIS much!!
Looks like what happened is I weakened the elbow doing yard work, such is the nature of spring. Then I made the mistake of reaching for something on the table and was hit with an amazing wave of pain! I iced it, rested it, checked it out and knew it had dislocated and managed to reset it a day later, but the pain wouldn't go away.
After another day I called my Dr, and he sent me to an orthopedist. The ortho found that I had reset the elbow but managed to seriously pull the muscles and tendons around it until the elbow was so weak it keeps slipping - hence the continual pain.
He wrapped it and had me measured for yet another brace. This time it is a compression brace, from the same company that makes the shoulder brace I have had wonderful luck with. I'll wear the brace (once it arrives) for several weeks so the elbow can start healing, then begin yet another set of strengthening exercises. At least it wasn't too serious (I was afraid I was finally facing surgery and pins - pushed that one off a while longer :-) )
Friday, February 6, 2009
Taking Winter One Day at a Time
I wish I could say that things are getting easier. At least it seems that EDS is getting more manageable.
I think the biggest help has been in the area of pain management. If I can keep my pain under control then I don't seem to have as many episodes of clumsiness or exhaustion. What is seeming to help the most are little things that I wouldn't have expected to make such a big impact.
For example, keeping a pair of thin knit gloves around and remembering to wear them whenever I go out (even if just to take out the trash). For longer excursions outside or even driving I have found that Isotoner gloves are amazingly comfortable, keep my hands warm and even help stabilize the loose finger joints. Now, if I could just find a pair of gloves that allow me to operate the latch on my dog's leash!
Another thing that is helping is to remember to rest. Sounds silly, but the little change of stopping and lying down for 30 minutes instead of pushing through until I complete something works wonders! I am only able to do this on the weekends, but it helps enough right now that my pushing through the work week isn't leaving me as worn out by Saturday as it used to.
I think the biggest help has been in the area of pain management. If I can keep my pain under control then I don't seem to have as many episodes of clumsiness or exhaustion. What is seeming to help the most are little things that I wouldn't have expected to make such a big impact.
For example, keeping a pair of thin knit gloves around and remembering to wear them whenever I go out (even if just to take out the trash). For longer excursions outside or even driving I have found that Isotoner gloves are amazingly comfortable, keep my hands warm and even help stabilize the loose finger joints. Now, if I could just find a pair of gloves that allow me to operate the latch on my dog's leash!
Another thing that is helping is to remember to rest. Sounds silly, but the little change of stopping and lying down for 30 minutes instead of pushing through until I complete something works wonders! I am only able to do this on the weekends, but it helps enough right now that my pushing through the work week isn't leaving me as worn out by Saturday as it used to.
Wednesday, June 4, 2008
Another Fall
I fell again yesterday. This time I landed on the inside of my left knee and managed to damage not only that knee but the ankle, hip, left hand and elbow. I thought I didn't hurt too much this morning, but became light-headed at work and was sent home by the nurse. I see my doctor in about a half an hour to see if I did more than just bruise and to figure out what to do about the pain.
Wow, I hurt! I braced my ankle to try to stabilize my knee and hip (since my latest new knee brace slips after less than an hour of wear). I am limping a bit straighter, at least. If I sit too long my back hurts. If I stand my leg, especially the knee, hurts. Lying down causes all of the joints wrenched in the fall to throb. Any suggestions?
I have also started writing about EDS (as well as other topics). I had this need to spread the word, and was accepted as a writer for an online magazine called Suite101. You can read my EDS articles (yes! I'm a published author!) here:
and here:
Wow, I hurt! I braced my ankle to try to stabilize my knee and hip (since my latest new knee brace slips after less than an hour of wear). I am limping a bit straighter, at least. If I sit too long my back hurts. If I stand my leg, especially the knee, hurts. Lying down causes all of the joints wrenched in the fall to throb. Any suggestions?
I have also started writing about EDS (as well as other topics). I had this need to spread the word, and was accepted as a writer for an online magazine called Suite101. You can read my EDS articles (yes! I'm a published author!) here:
and here:
Tuesday, March 4, 2008
I'm Still Around
Winter is an interesting time. I find that days and weeks literally disappear. I realized today that it is March, and am not really sure where January and February went! Much of it is due to keeping busy with children and the seemingly endless array of winter storms, but I know now that pain is a major factor.
When you hurt and, like me, become very good at ignoring it your days become a blur. You do what you have to do and occasionally realize that the world is continuing around you. From time to time I realize it is happening, but feel helpless to do anything about it. Even resting can be a challenge when lying down becomes uncomfortable after about 8 hours.
With EDS if you fall or even just slip then you are risking soft tissue damage. One doctor described it to me as microscopic tears in the muscles and ligaments. Once this small damage occurs the pain can set in, and without lots of sleep and rest your tissue is going to take longer to heal. What a catch 22 that to heal you must rest but resting is so uncomfortable you must get up and move, thus leading to potentially more damage! Let alone the fact that your collagen is genetically damaged and it takes longer for your body to heal (even with rest).
Laughing at the irony is sometimes my only defense.
When you hurt and, like me, become very good at ignoring it your days become a blur. You do what you have to do and occasionally realize that the world is continuing around you. From time to time I realize it is happening, but feel helpless to do anything about it. Even resting can be a challenge when lying down becomes uncomfortable after about 8 hours.
With EDS if you fall or even just slip then you are risking soft tissue damage. One doctor described it to me as microscopic tears in the muscles and ligaments. Once this small damage occurs the pain can set in, and without lots of sleep and rest your tissue is going to take longer to heal. What a catch 22 that to heal you must rest but resting is so uncomfortable you must get up and move, thus leading to potentially more damage! Let alone the fact that your collagen is genetically damaged and it takes longer for your body to heal (even with rest).
Laughing at the irony is sometimes my only defense.
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