Wednesday, December 6, 2017


Work, physical therapy, appointments, kid events, performances, shopping, volunteering, parties.  This time of year is notoriously busy.  I find I like to stay busy, and the Nov/Dec holiday rush makes that easy.  But, juggling that with chronic illness is becoming more difficult as my symptoms become more demanding.  I don't want to say, "no," but the risk of extreme physical fatigue made it important for me to learn.

Staying busy is a coping mechanism for me.  Having a schedule and knowing what I need to do gives me something to focus on besides the ever-present pain. I feel productive and useful.  Carefully balancing mental and physical activities allows me to rest my body and use my mind.  Some days I am better at this than others, so I take each day as a learning experience and use my successes and failures to improve my ability to stay busy.

I feel guilty when I say no to an invite or activity.  Yet, I feel worse when I say I'll do something then have to cancel because my body is too tired.  I see others my age and older able to be busier than me and feel I should be able to balance my activities that well, too.  But, I cannot.  Because EDS makes me different, unique.  Because my symptoms are not as predictable as I want them to be.

Tuesday, December 5, 2017

Life with a Chronic Illness

So much has happened since my last post four years ago.  Children aging and being diagnosed.  Me aging and learning more about EDS and its co-morbids.  My husband learning to be my care giver, while both of us adapt to my changing physical abilities.

Ready to join me on my continuing journey?  I welcome you whether you've followed me in the past or are new to the adventures.

Monday, August 19, 2013

My First Craniosacral Therapy Session

At my last visit my PT suggested I have a session with her partner so I can try a different technique than Rolfing.  Her partner's PT speciality is Craniosacral Therapy.  Since this was not the first time Craniosacral was suggested to me, and the first time the therapist was conveniently located, I decided to give it a try.

We started our one hour session with some core strengthening exercises to help stretch my spinal curves and improve my balance.  This did not go well.  As with many stretches, I was not feeling any tension or pull in my muscles when we worked with my scoliosis curves.  When we switched to some deep core strengthening the left side of my back panicked and started spasaming.  Of course, this isn't an area that should react in such a way when working with the pelvic muscles, but I've learned to expect the unexpected when it comes to my body and what should be "normal."

Since my body was now in too much discomfort to continue (it wasn't really painful, but too distracting for me to isolate specific muscle groups) we switched to Craniosacral.

Whereas Rolfing involves force and strong repositioning of the body, Craniosacral involves light touch.  It reminded me of meditation sessions I had with a yogi many years ago; as I would meditate she would work with my chakra through gentle pressure at various points on my body.  Today, I easily slipped into a meditative state while my therapist worked with points along my spine from my sacrum to my skull.  While she worked I felt stress, tension and, yes, even the muscle spasms melt away.  I was left with a deep feeling of peace, and much of the daily pain I live with had minimized further into the background than I typically keep it through sheer determination.

Craniosacral Therapy does not always work immediately, so immediate relief today was a benefit to my body not always reacting "normally."  I will likely see her twice more this year to see if I will experience more or prolonged improvement.

I did find it a nice change, however, to leave a physical therapy session feeling this good and not sporting a few new bruises.

Monday, August 12, 2013

Rolfing Update

I started a form of physical therapy called Rolfing a little more than a year ago.  This is a good point at which to reflect on my progress.

My appointments are not always regularly scheduled: sometimes 2 weeks apart, others 3 or 4 weeks, and in July more than 5 weeks.  What I noticed this past July stretch (almost 8 weeks) is that my body lost much of its progress but went right back into place during the rolfing session.  Today, 5 days after that session, I am still standing tall, my head hitting the highest mark on my height chart.

Yes, I keep a height chart.  I started it a few months before my first rolfing session, even before I heard about rolfing, and my highest mark is more than 3 inches above my lowest.

The sore muscles and bruising after intense deep-muscle sessions are worth it.  I have more low pain days and feel taller.  This summer I seem to have more energy, though not as much as I remember from a decade ago.  It is progress, part of a journey, and I am not yet where I want to be.  It is also a part that I will continue through the next year.

Tuesday, April 2, 2013

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.

Monday, January 21, 2013

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.

Thursday, November 22, 2012

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!