Trust Your Instincts.

About 18 months ago, when I began an earnest push to get my medical needs under control, one diagnosis bothered me.  It didn't make sense to me, and didn't sound right.

I was informed, by the only pain specialist at my local hospital, that the pain in my hip was bursitis and the solution was shots of cortisone.  Though what the doctor said was logical, and he was the medical specialist, not me, it didn't FEEL right.  Other diagnosis, even from this doctor, made sense, but not this.  But he became defensive when I pushed for information and I had to go out on my own to learn more.

The more I researched bursitis, its causes and symptoms, the more I felt I was right.  The pain was not constant, and the symptoms varied in ways contrary to what I read were typical.  I began asking other specialists what they thought.  Unfortunately, the more common response was to ask the doctor I saw first since he knows more than they about bursitis.  Since, at that point, I had independently discovered reasons for several problems that he had not considered, or at least suggested, and found non-pharmaceutical relief for these, I no longer trusted him at all.

Then I had a rolfing appointment during one of  these pain flare-ups in my hip.  When I explained the situation to her, my physical therapist gently analyzed my hip.  An amazing weight lifted from me, an "ah-ha!" moment, when she pointed at a spot about an inch away from the pain and told me that was where the bursa sacs are located and they are not inflamed.  Turns out I have a recurring muscle knot.  The muscle work she did that afternoon relieved the pain tremendously!  I have some physical therapy ahead to further relieve the pain and, perhaps, even keep it from recurring.

  The more I pursue my needs as an EDSer, the more I learn to reach deep inside my psyche and trust myself. I am thankful I trusted my instincts and refused treatment for bursitis.  It would have been a waste of resources, medical and time,  and all for naught.

Learning to Manage Winter Pain

Winter typically means large amounts of pain and frustration, but I'm finally learning how to manage both.  My techniques include:

• Rolfing -> I'm continuing appointments despite some bruising from the deep tissue work.  I notice my muscular structure more now than before, and feel like I am fighting to keep my hard-won gains in the battle to stand straighter.  In response, my rolfer and I agree to make visits more frequent, once every 2 weeks instead of once a month, in hopes to help my body "remember" what it *should* be doing.

• Warmth -> most people seem to prefer cold on a soft tissue injury, but for me, especially in the winter, this results in more pain as my capillaries collapse.  So, I am trying to keep myself warm before I notice I'm cold.  This is currently working with the assistance of flannel lined pants/jeans, fuzzy slippers, flannel sheets, and not being afraid to wear gloves indoors.

• Staying active -> the more I hurt the less I want to move.  I'm fighting this instinct by continuing to move despite the discomfort.  This idea came from a friend whose child has juvenile rheumatoid arthritis and staying active helps minimize the flare-ups.  I figured it is worth a try.  My biggest effort is walking since yoga during the winter still results in dislocations.

• Laughing ->   they say laughter is the best medicine, so I look for something to laugh about each day.  Occasionally, this results in jaw pain, but I think it is worth it.

Dislocations and subluxations still occur, but I feel like I am managing them okay at this point.  Usually, when I see the arctic cold descending into my area of the country I cringe and cry, then am miserable until spring thaw.  This year it doesn't seem as intimidating.

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!