Busy

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.

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.

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.

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.

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. 

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!

Orthopediatic Outlook - Stormy Skies Ahead

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 :)

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.

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!

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 :-) )

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.

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:

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Latest Disabilities Articles by Tamara S. Andrew Birch

and here:

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Latest Physical Disabilities Articles by Tamara S. Andrew Birch