This site is dedicated to the ongoing journey of emotional and spiritual growth in the face of physical deterioration. Join Susan S. in her day-to-day battles where victories are celebrated and defeats are sorrowfully appreciated for their lessons.

Saturday, September 12, 2009

God's Fire

It was this time last year that I had a life transforming experience while riding my recumbent trike. It stimulated my writing the following letter to friends and relatives in honor of the new season of autumn. I have chosen to reproduce it here to share my continuing joy for this new season with hopes for spiritual highs and tolerance for our physical constraints.

The fall of 2008 was just beginning to flourish and reveal her colors to me as my family and I began our second year of life in North Carolina. Along with the beautiful colors outside, the internal drive of my Jewish soul was rolling into motion as the High Holiday season was also being ushered in with the new, northern winds. As these days are full of introspection and prayer, they are also typically chock full of family dinners, hugs & kisses, repetitive telling of old stories, and eating leftovers in between the festive meals of Rosh Hashanah, Yom Kippur, Sukkot, Simchat Torah, and probably some others that I’m forgetting. As there are typically two festive meals for each holiday, my mother generally makes the first and I take on the second one, unless I’m not well enough to prepare a meal in which case my mother will oversee both nights. Regardless, we are always together.

Just before the weather began her change, as the long days of summer still lingered, we experienced a stretch of dark clouds and heavy rain. It was during this time when Mother and I recognized that pragmatics would not allow us to be together for Rosh Hashanah this year. So, we did the best we could at establishing normalcy by sharing our independent dinner preparations through e-mails and telephone calls. Although we each seemed to survive the first night of Rosh Hashanah, my husband and I ended up on the road the next day to attend Mother’s meal for the second night. We drove through four hours of treacherous weather including golf ball sized hail and two tornado hits. Oy vey! We made it to Mother’s in time for desert and I stayed for a five day outing to ensure a more comfortable mother-daughter separation the following week during the Yom Kippur holiday.

Those who know me know that I never travel without my recumbent tricycle. I love to ride it and the hills in Asheville, NC don’t scare me as I’ve become stronger since my move to North Carolina from South Florida 1 ½ years ago. Despite my many medical and neurological limitations, I’m always looking for a new cycling thrill! Being realistic about my limited ability to climb up to the Blue Ridge parkway, my loving bonus father (sounds better than step father, don’t you think?), drove my trike and me up about 5000 feet to the top of a mountain (yes, it gave me a headache!) where I bundled up with a zillion layers of warm, cycling clothes, and prepared for the ride of my life.

The first half of the day was primarily downhill and many “thank yous” to God for my new disc brakes. While riding along the Blue Ridge Parkway, I felt as if I was floating in the sky. The day was clear, the air was cold, and I had evolved into an ingredient of the mountains. It felt as if I was a part of the winding road and truly belonged to the earth. I could see the mountain tops right in front of me, I could feel the wind blow by me and nudge my bike around, I could smell the scent of pine, but, I still could not sing like Julie Andrews in the opening scene of The Sound of Music! Darn it!!!

As I turned off the parkway onto the road which would guide me down the mountain, the vista changed from mountain tops to forest. Waterfalls and wildlife were plentiful. Most of this portion of the ride demanded great attention to technicalities for safety, so it was hard to enjoy some of these things without stopping, but stop and enjoy I certainly did.

While focusing intently on a fast, downhill stretch, an odor of smoke caught my attention. At first it seemed to be coming from a chimney in the distance. Further down the road, the smell became more intense, increasing my alertness for signs of fire. Low and behold, off in the distance to my right I could see a golden glow that frequently goes along with the smell of smoke. “How exciting,” I thought, “I get to ride through a forest fire!!!”

Pedaling closer to that golden glow, I discovered that it was not an exciting forest fire after all. What seemed like fire were actually autumn leaves, brightly golden, bathing in the reflective glare of the sun. I don’t know where the smoke odor came from, but it was clear to me that the beautiful leaf fire was coming from God. It didn’t destroy, it didn’t consume, and although it didn’t warm the body, it definitely warmed the soul.

It was on a descending cycling ride through the Piscah forest during the fall of 2008 that I discovered “God’s fire.” Its brightness inspired senses of peace, strength, and courage deep within my core. I saw many pieces of God’s fire all the way through the forest as I pedaled throughout the morning, and I kept those feelings with me as I struggled throughout the more challenging parts of my ride later in the day. I found God’s fire to be a steady strength which did not vary in it’s blazing by neither bursting out of control nor burning out of fuel.

Throughout the first half of my journey, I was preoccupied with the technicalities of safety in a 3000 foot decent. This downhill experience rivaled any carnival ride that Disney could come up with. Although the rough ride left me with some neurological symptoms related to my Ehlers-Danlos Syndrome, a good rest with God’s fire left me ready to get my feet moving again. The second half of my journey was the most physically challenging ride I have attempted to date, with several high grade climbs that I accomplished with a wheeze from my chest and a smile on my face. I may have a minor injury to my leg from this ride, but received a lifetime of repair to my soul.

I pedaled 35 miles that day, clocked a maximum downhill speed of 50mph, and had a permanent fire lit in my heart. Not bad for one day’s effort!

To all of my Jewish friends, I wish you and your families a happy new year with an easy fast and to everyone I wish to share with you a piece of God’s fire from my heart during this new season!

Susan S.

Saturday, July 4, 2009

When The Answer is Clear: Stage I

The quest for an accurate diagnosis when riddled with atypical symptoms is emotionally painful and can test the emotional fortitude of even the most devout optimist. So many of us with mysterious ailments have blogged about desperate needs for an ICD-9-CM code, and the validity that comes along with it. Instead of finding explanations for the symptoms that have destroyed our lives, we are dealt cards of shame by medical professionals who will not accept their own limitations.

Because some medical professionals are not able to tolerate 'unclosed cases', they circumvent their own, personal feelings of frustration back onto the patient. As I have read in many blogs, this repeated ridicule of arrogant medical professionals is frequently as paralyzing as the physically disabling symptoms themselves. It's easier to accept the failures of our bodies than it is to accept the fallacy that is fed to us: We are failures to the world. It took quite a bit of emotional energy to fight this message and I am grateful to have an ICD-9-CM code of 756.83 which validates me as a legitimate patient, making it easier to battle the periodic attacks by doubting professionals who seem to feel very comfortable making others feel uncomfortable. Yes, 756.83 has bought me some credibility, just as the many initials after my name, but I STILL guard against such attacks.

In my first blog of 2007, I described how a story profiled on the television series Mystery Diagnosis lead me to a team of doctors who first gifted me with 756.83. My first year of owning 756.83 was wonderful…not that any of my outrageous symptoms improved, but at least I had an understanding of what was happening to my body. This understanding seemed to take a lot of the fear away and I was able to focus on building a new life within the limitations of my disease.

As an optimist, I never focused on the degenerative issues associated with 756.83. Convinced that understanding was the key to overcoming fear, I continued my quest for explanations for new symptoms as they arose. My most recent symptoms include dramatically increased pain levels over the past year. I now have pain in areas that I never knew I had. Lying on a gurney in the ER with a Dilaudid IV only made the pain seem distant. It seems to come and go as it pleases and, despite my talent at tracking patterns, no one has been able to identify a definitive pattern to my most recent attacks of pain.

Once upon a time, before any of this stuff hit the fan, when I was a highly functioning professional, wife, and mother, I spent a year telling a therapist that I felt like something was very wrong with my body. Having a lot of faith in me, my therapist encouraged me to pursue medical attention. Appropriately, I did NOT follow-up on this for fear of being labeled a nut. Hmmmm. I wonder if I would have been labeled a nut if I went to the doctor and told her that I had a feeling that something was very wrong with my body? Anyway, when everything did hit the fan and we first discovered my elevated intracranial pressure…way before I received 756.83…I told my doctor about the feeling I had for the past year. Her response was that she wished I had come to her because usually when patients say they have such a feeling, there typically is something wrong. Frankly, I didn't believe her and still felt I made the right decision by not pursuing medical treatment based on , "a feeling." Personally, I don't see anything wrong with being a nut, so long as you don't cause anybody harm (including yourself). Unfortunately, however, most of the world confuses being a nut (something like 307.80) with being evil.

Jumping forward to this past year, despite the cushioning effects of 756.83, I once again experienced that familiar feeling of impending doom. I tried to write it off as anxiety from new symptoms and intractable pain, but my intellect would not allow me to ignore what was once before correct. I tried to imagine what it was that my body was telling me…the secrets behind the mysterious, new pain. My imagination became ugly as I saw my internal organs falling down inside of me. It felt like everything was falling and, for probably the first time during my illness, I was terrified. Not wanting to let my imagination get the better of me, I pushed those ugly thoughts out of my head and focused on getting to NY for a follow-up visit at TCI, with all of the appropriate imaging and functioning studies scheduled to my specifications.

The ease with which Dr. B. of TCI first bestowed 756.83 upon me in 2007 was almost comical. It took a few months before I sincerely recognized that one very large piece of my puzzle was in place. Despite this wonderful gift, my hypervigilance continued as I maintained my stance at following up on every illnesses I had until I could piece it all together and fix myself up. Reasonable, right? After all, I am a scientist…able to leap tall buildings without breaking a single test tube! I should be able to fix this enough to get back to work, where my colleagues are still patiently waiting for me to return, right?...NOT! Not only haven't I been able to fix myself, but things just keep getting worse and I haven't been able to get to the root of the problem which will halt all of this decomposition. I have lots of ICD-9-CM codes in addition to 756.83, but most of them seem to result from 756.83 and nobody in the world, anywhere, has any answers about how to fix that…except to fix things as they break.

So I went to NY in the spring of 2009 in the hopes of a potential diagnosis which, if I had it, would be easy to fix and bring me much relief. I suppose I should be relieved that I won't need surgery for this problem that I don't have, but I would have liked to have something reasonable to fix. I met with several doctors on that trip, and none treated me with the dreaded attitude of some professionals with one semester of psychiatry training. No one accused me of being psycho. There was one commonality between them, however, regardless of the facility they represented. They each avoided eye contact with me as they initially expressed condolences for my condition and stated that I was far too young to have to deal with all these medical issues. This time, the doctors were all sad, and they did not blame me for it. I am grateful for the lack of blame, but the sadness frightened me.

It all came to an emotional head for me when, while meeting with one of the doctors, I assertively zeroed in on the source of my debilitating, abdominal pain…the pain that at times would not go away with Dilaudid IVs, the pain that has kept me from my beloved recumbent tricycling, the pain that is new, and scary, and unknown. Backed into a corner, the doctor seemed to throw up his arms and exclaim that with 756.83…Ehlers-Danlos Syndrome…everything falls down and causes all kinds of pain. I was told clearly that it hurts in my feet because of the falling of my spine and the abdominal pain could be from a dislocated coccyx, bad hip from years of repeated subluxations, neuropathic pain from pressure on spinal nerve roots, or falling organs.

It was the last one that hit me: the falling organs. This was my fear. This was what I felt in my heart had been happening to my body. This is what had been scaring me for so long now. I was facing my fear right in the face of what we tend to pray for: a doctor who takes our symptoms seriously. I got what I prayed for. I got my answers. But I didn't like my answers. The office had to work around me the rest of the afternoon because I was so hysterical that I could not be moved from that examination room for some time.

So what do we do when we finally satisfy all the questions but we don't like the answers? I don't know the entire path yet, but I know that the first thing you do is cry. Then you borrow your mother's credit card while in New York and go shopping…it's kind of like binge eating. Then you go right back to crying.

And then you isolate so your crying isn't disrupted, because it stinks to have to keep up a cheery face when you really need to be crying. You dye your hair bright red as a way to scream out something to the world, but who knows what it is you're screaming out with bright red hair. Then you sniffle. Then your hair fades to pink. Then you chuckle at your hair and put on long earrings and hang out at Starbucks…and you blog.

To be continued as I migrate into Stage II...

Tuesday, May 5, 2009

Celebrate the Day

I recently attended a local, outdoor event which included terrific community performers. The day was beautiful and the mercury peaked at about 90 degrees. My body's inflammation level was low, so I was able to cycle from my home to the event and enjoy the performers in the comfort of my recumbent trike's seat. Ahhhhhh. Lazy in the sun!

Despite the heat, there was a gentle breeze which flowed through everything from trees to people. The breeze gently nudged the flowering trees that spring had recently awoken, and it moved through the crowds of people who were gathered at the base of a stage, and traveled upward to cool the performers. Just as the breeze moved the trees, the music seemed to move the people in a common wave. No one was untouched by the feel of the music, but some were capable of feeling it more than others.

The audience was made up of families and unattached adults of varying races and ages up to 80ish years old. The kids danced freely with little inhibition while the young adults moved with precision and sex appeal. One participant caught my attention as I was able to identify her as a chronic pain sufferer by her appearance. She clearly had orthopedic complications, including a scoliosis. Despite her apparent disability and advanced years, she was the most celebratory dressed person there and danced like she had once been a professional. Her professionalism was as nostalgic as the 60's style music coming from the stage, although it looked like she might have been able to contribute some nostalgia even in the 1960's! At one point, she executed a dance maneuver while close to me and I observed her shoulder subluxate. Without missing a beat, she reset her shoulder back into normal position and continued on with her enjoyable performance. I understood the kind of discomfort that accompanies that type of orthopedic hypermobility and I knew then that her overall body pain must be quite severe. Yet, despite the crippling pain, she left her walker on the sidelines and danced in celebration of the day.

Since I always keep a camera on my trike, I captured some of Carolyn's spring day celebration, and then had the honor of speaking with her. Anyway, without further ado, he-e-e-e-e-e-re's Carolyn!


...and here's an auditory treat for your day from Monty Python!

Thursday, April 16, 2009

How do you cope?

Many people ask me how I am able to cope with my illness. The answer is simple: THERE IS NO ONE MAGICAL ANSWER. In general, I use whatever works, whenever it works. And when all else fails, I simply cry. Then I pick myself up and carry on with the next challenge.
This video blog shares some of my coping techniques. I hope that you will, in return, share some of yours with the rest of us by clicking on the comments option below.
Susan S.

Wednesday, April 1, 2009

How I Cope When All Is Bleak

I don't always have the perfect attitude, but I try to keep in mind that things tend to get better when everything is really bad. Statisticians refer to this as the floor effect. This video shows what I look and sound like now that everything seems really lousy. Please ignore the fact that I'm overdue for a haircut.


Susan S.

Monday, March 23, 2009

Cycling Seasons

It has been suggested by more than one physician that I might not be alive today if I hadn't grasped the sport of cycling into my life. Certainly, the quality of my life is greatly enhanced by this luxury. I offer a prayer of thanks every time I begin a new ride. Although I cycle throughout the entire year, the best season to do so is most definitely during spring. The cool air, clear skies, and…well…just look at the pictures I took last year!

A couple of years ago, I was so ill that I was not able to even stand up unassisted. I was battling for my recovery with every ounce of fortitude that I had available inside of me. I knew that I needed to get on my trike in order to build my strength back up, but couldn't do it alone. Since I had the assistance of a private nurse caring for me at my home during this period, I instructed her to get me on my trike. Naturally, if I was going to ride my trike, I felt I should also be dressed in my Lycra riding clothes. This was not an easy feat for the nurse to accomplish as I am a somewhat Rubenesque woman who has trouble getting into Lycra pants even when I can stand up on my own. To make things even more complicated, my nurse was less than cooperative as she felt it was much more important that I drink a can of Ensure than ride some bike. While this nurse was very nurturing, it was not what I needed. I let her go that evening and hired a new nurse to start the next day.

When Teressa showed up the next morning, she wore her traditional nursing whites, but also brought with her a white pair of pedal pusher pants to go along with her bike on the back rack of her car. Twice a day, Teressa put me into my Lycra pants and onto my trike and twice a day I pedaled as hard and as far as I could. Initially, she just walked along side of me because I only made it from my driveway to the next door neighbor's house. Eventually, I was able to make it to the corner and back, and at that point Teressa began to ride along side of me. We rode around the block. Then a couple of rides later we would make it to another black. Eventually, I made my goal of pedaling to the cemetery and back. That was when Teressa and I knew I had arrived into recovery from the horrendous episode that had disrupted my neurological system.

Although it's been a while since I've called Teressa to play catch up, I have been fortunate enough to be able to enjoy my cycling. Sometimes I'm more capable than others, and there's no question that my condition is degenerative, but I intend on making it work for as long as possible. When the time comes that I am not able to ride, I guess I'll have to discover a newer passion in life…after all…cycling replaced my previous passion of work!

This video shows how I'm adjusting my cycling habits to accommodate changes in my physical condition:

Saturday, March 7, 2009

Silver Ring Splints

It's been a while since I've posted, but I'm getting back into the groove.
Over the past year, I have discovered which orthotic devices are helpful for me. By far the biggest winner is my Silver Ring Splints . These very attractive rings have reduced the pain in my hands by about 70%. I had no idea that the reason my hands were hurting so bad were a result of the hyperextention of my fingers, because my fingers did not hurt very much. Thank you Dr. Francomono in Baltimore for sending me to this wonderful company that provides splints long distance. I wear them for almost all of my normal activities (take a look at this video!):


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