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. 

Rolfing Sessions 3, 4, & 5

My last three sessions focused on what is called the "center line."  This is the imaginary line from the skull to the ground.  I have come to think of it as a plumb line; if I drop a weight on a string from my head this line would be where my spine should be.  It is side to side and front to back.

Much of the work has been through deep muscle triggering/massage and at times becomes a bit painful.  Luckily, she backs off when I signal, usually through body signals before I think to say something! 

After my third session I found I no longer have to fight to stand up straighter.  This is a wonderful experience, allowing me to see the world from higher up and look in front of me as I walk, instead of at my feet so I won't trip and fall and inward to remind myself to continue pulling up, wagging tail, etc.

My fourth and fifth sessions continued from this, with focus more on the legs and hips, but continuing in the spinal areas.  It has been 3 days since my last session and I am still a bit sore, but in new ways (mostly where the pressure became too much and my EDS bruising tendencies kicked in).

I love how my body is changing!  I feel stronger, have more energy, am standing taller, and have not fallen in months.  I also have not experienced a full hip or shoulder dislocation since starting.  Subluxations still occur, but seem less severe.  I have not had this much success  from anything else I have tried, and am, yet again, looking forward to my next rolfing session.

Second Rolfing Session - Walking

Yesterday's big event was my second Rolfing session, and I am still loving it!

This appointment's focus was on how I walk. 

We started by evaluating how well my newly lifted shoes level my hips.  Not only are my hips more level than when I walked in for my first appointment, but she told me I am moving more normally than 3 weeks ago.  Then we moved to my feet.

Looks like, in this situation, EDS is a benefit.  The joints between the carpals, the small bones in the foot, are very flexible.  She was able to easily get them moving, which was a little scary at first since I have slipped some of these joints before.  We worked with what it feels like to move the foot properly as if walking, then she moved on to my legs and hips.

One of my legs likes to turn out.  Through deep tissue massage she turned it in and helped me to feel how it should face forward.  This also involved the hips and teaching my coccyx, or tail, that it is separate from the hips.

Then, I got up and walked.

It is strange that I now understand what I've been told for years about, "walk on the outside of your foot."  It involves a lot of rolling of the foot, bending of the knees, movement in the hips.  And, I didn't fall!

As I've aged I've become more scared of falling.  In my defense, falling has resulted in much bruising, subluxations, and dislocations.  It hurts a lot!  The body's natural reaction is to defend against this, but it does it by limiting or eliminating natural movement.  This, in turn, causes more instability and can actually cause more falls.  A vicious cycle. 

I would not have believed anyone if I was told that to minimize pain I had to learn to walk again.

Alternatives to Surgery

My last update was about the immediate need for surgery. 

Hasn't happened.

I consulted with an adult scoliosis expert at the same hospital as my EDS specialist.  His conclusions:  I'm too scary to operate on.  I would be in more physical pain with more physical limitations after surgery.  I am flexible enough that there would be a near total curve reduction (as evidenced by a push-pull x-ray series), but the odds are for a lower quality of life. 

My orthopedic specialist thinks the surgeon is too comfortable in his tenured teaching position and wants another opinion.  Me?  If one of the best of the best says, "Eek!" I want to try non-conventional alternatives first.  I won the argument.

At this time I am working with a new orthotic/prosthetic specialist who reevaluated my short leg and changed my shoe situation.  I am spending the next two months, the warmest and my least painful, walking in and adapting to the changes before we determine if this is best.  After a few hours in my new sneakers I already decided I like it if for no other reason than I am  very stable.

I also am seeing a physical therapist who specializes in a technique called Rolfing.  So far I like the results and have even gained about 2 inches of height!  Granted, I shrank almost an inch between the first and second session, but I have experienced minimal back pain (though my back muscles are very tired at the end of the day even if I skip my exercises!).

So, I'm heading into the summer with no surgical scars, new physical therapy technique, new shoe lifts, and a positive attitude.  Let's see where this road takes me!