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.

Thoughts for Thanksgiving

This morning I read an article, When Poor Health and the Holidays Collide, by Toni Bernhard, J.D., and it ignited a trail of thoughts about things for which I am thankful.

I am thankful:

• for my family's support when I need to rest.
• that I awoke this morning with minimal pain.
• for my children, who help me in the kitchen even when it is not a holiday.
• for the opportunities for health care and support I can access locally.
• for the woodpecker at the suet cake hanging outside my window, who always is nearby when I need to see a splash of color.
• for spontaneous happenings that make me laugh.
• for the warning signs my body gives before I sublux a joint.
• that I have learned to listen to my body's needs, and am learning to attend to those needs.
• that I can still type.

I wish everyone a warm, healthy, and happy Thanksgiving!

Living with Chronic Pain

It took me a long time to admit that I have chronic pain.  Pain that doesn't end.  Pain that is a constant companion.  Pain that masks new injuries, unless they themselves are more painful than the background noise.

But now that I acknowledge its existence I am learning better how to live with it.  For example, I spent last weekend resting.  After injuring my hands I knew I would need to take it easy, but then was laid flat by a headache.  Two days of nursing my needs for rest left me exhausted, but feeling emotionally okay and ready to face the week.

Then I encountered the poem, Broken, by Angelika Byczkowski, who also lives with EDS.

It helps to know that, when living with a hidden illness and battling chronic pain, we are not alone.  We can be strong, even when we weep.  We can reach out and find others who do understand.
 

Problems with EDS and Rolfing

So far, I've had nothing but good things to say about rolfing.  I have, however, realized that one problem I consider minor should be mentioned for the benefit of others who would not think so.  Bruising.

On symptom of  EDS is easy bruising.  In my case, this is confined to some areas of my body - other regions being less likely to bruise in similar situations.  Not all EDSers have similar bruising patterns; ranging from severe bruising from a minor bump to little or no bruising from a major fall.

Rolfing is deep tissue work, and I have, on several occasions, found bruises after a session.  At this point, I consider this a minor inconvenience compared to the overall success, but not everyone would agree.  As such, I wanted to make sure I mention it in case others are considering rolfing.

Rolfing Session 6 and Autumn Pain

As happens each fall, my body is reacting to the colder weather by stiffening and aching.  However, after a few months of rolfing sessions and my new, higher lift for my shoe I am noticing the pain is different.

Typically I would experience pain in my upper right back and neck.  There is a small amount of stiffness there, but no more than all summer.  Though that area has not become painful the lower left area of  my back has.  This is not an area where I typically have much pain, ever, so it has me concerned.  After my pre-session evaluation today I was reassured because, whereas the pain is unusual and uncomfortable, there is noticeable lengthening in my lower spine! 

My other area of pain at this time is still minimal compared to what it was last winter, but any hip bursitis is too much for me.  Last winter was the first time I experienced it, and I was hoping it was gone for good with all the therapy I am doing.  We worked with the hips today and, hopefully, I can lie on that side tonight without discomfort.

Today we did nothing "new."  Our focus was on correcting areas to minimize pain and on more with the center line.  Though I have not noticeably taller after sessions I am also no longer shrinking between them. 

I have 3 weeks to the next session.  Cold, wet fall weather is settling into the region and threatening to settle into my soft tissue, too.  My goal during this time is to stretch at least a little each night and try to minimize the fear of the pain.

Jaw Dislocation

I've determined I will take a hip dislocation over dislocating one side of my jaw any day.

Perhaps it is because I've survived a hip dislocation many times.  Maybe the soft tissue surrounding my hips are able to adapt better because they are larger.  Possibly, I just don't remember how much it hurt the first time.  Whatever the reason, the pain in my face was incredible.

I am so thrilled that the rolfing is working and, with the help of the new shoe lift to level my short leg with my long one, I have not had a full dislocation of any joint in many months.  An occasional slip, but nothing big.  Dislocating my jaw was a complete shock.  One side slips and pops a lot, and occasionally dislocates, so I am careful not to take too big of a bit of an apple and avoid tough-to-chew food. 

To add to the complete shock of having to reset the other side - it happened while I was yawning.  I guess I over-compensated for the weak side, but it slipped right out.  As with other joints, I snapped it back into place, but that is when all the muscles, tendons, and ligaments in that side of my face exploded in colorful ways.  I didn't realize how many little tissue lengths are involved in the jaw, cheek, and neck.  Swelling went into my mouth and my sinus cavities on that side.  I've spent the past 3 days talking as little as possible and eating soft food.

This event also reminded me how much pain and anxiety are closely related.  I have had a little stress recently, but nothing so much or such type as to stress me out.  The past three days, while living with this pain, little things send me through the roof and I panic.  I fought down two panic attacks yesterday, and realized I was worrying about things not worth worrying about. 

This morning, my pain is much reduced (ate an entire banana with only a little discomfort) and I am reflecting on the experience and realizing that I need to manage my pain better.  I cannot afford to run to the emergency department every time I dislocate a joint - the visit fees and prescription drugs will destroy me financially; besides, I hate the side effects of pain killers.  But, I do need to find something so I can keep the pain/anxiety minimized while I heal.