God’s Fire

Susan S. — Sun, 08 Nov 2009 04:57:37 +0000

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 [...]

...continue reading God’s Fire

When The Answer is Clear: Stage I

Susan S. — Sat, 04 Jul 2009 15:10:00 +0000

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 [...]

...continue reading When The Answer is Clear: Stage I

Lots to Think About Now

Susan S. — Thu, 31 Jan 2008 01:29:00 +0000

It’s been a long road so far, but alas it appears that there might be a resort full of lively activities just over the horizon, waiting for me to check in. Unfortunately, the road between here and there is partially ‘unpaved’, but with the support of my family, we’ll make sure our wheels are ready [...]

...continue reading Lots to Think About Now

My Story Begins

Susan S. — Wed, 01 Aug 2007 20:46:00 +0000

I always loved my work and took equal pride at my more traditional accomplishments at home, but I was never as comfortable with myself as I was during my mid-forties. I had arrived into adulthood and lived every moment to the fullest in the ways that I enjoyed the most.Throughout 2004, I could be seen picking out vegetables at the gourmet market on Wednesday afternoon with a Dictaphone in one hand and a cell phone head set attached to my head. On Thursday evening I would be cooking up a storm with my laptop computer in the kitchen running statistical programs and setting the table for Friday night. When we would get home from synagogue on Friday evening, soup would be simmering at the right temperature on the stove and the rest of the meal would be in foil packs in the oven at a low temperature. The table would reflect light from Grandmaâ€™s polished silver.

Although I had been a research psychologist since the early 1980â€™s, most of my work has been in the area of physiology with an emphasis on statistical methodology. My publications primarily focused on physiological responses to different types of stress, but my dream was to research the specific effects of trauma on mental and physical health. During the later years of my career, my dream was coming true when I was invited to join a team of scientists looking at war stress. The resulting data from this exciting study were becoming available for analysis and write-up at the time that illness entered my life. I was in the process of writing up my dream paper when I was stricken down.

As frequently happens when working in a research environment at a major University, several grant renewals came due at once. So, I had to put my dream paper down for a few months to work along with my colleagues to take care of grant business. It was during this time that I began to have female medical problems. They were unusual, painful, progressive, and unexplainable. I would frequently have to take Percocet while at work, so I arranged for a graduate student to watch over my shoulder and make sure I didnâ€™t make any mistakes, which I of course did. This was my first feeling of defeat because I never used to make mistakes at work. The only medical explanation that was offered by my gynecologist (whom I adore) was, â€œYouâ€™re a freak.â€ In November of 2004 I had a uterine ablation and in January of 2005 I had a hysterectomy.
b

While recovering from the hysterectomy at home about a week later, I was ambulanced to the hospital with partial complex seizures. I had never experienced this before. I also had the most horrible headache of my life, although I had been having terrible headaches for about a year or two. That day I received my first orphan disease diagnosis: Idiopathic Intracranial Hypertension (also known as Pseudotumor Cerebri or Benign Intracranial Hypertension), which is basically too much cerebral spinal fluid pressure on the brain for unknown reason. I was given medication which gave me some pain relief and partially retarded the blinding process from pressure on my optic nerves. Despite the horrendous medication side effects, I continued to work and returned to the front line outfitted with magnifying glasses to join my frantic colleagues in our desperate attempt at meeting all deadlines.
b

Once all the grant deadlines were met, I was finally able to take out my beloved trauma paper to work on again. Apparently, however, completing this manuscript was not in the current plan for me. Whatever was affecting my ability to work, pressure on my brain, seizures, medications, whatever, I could not understand my own work that I had done a few months earlier. As a matter of fact, I was not able to read any material in paragraph form. I tried so hard to read what I had done and tried to understand what I had written and understand the diagrams I had designed, but I could not. I was devastated. I had to put the trauma paper away again, with the hope that that part of my brain would come back someday.
b

So I went back to the simple, mundane statistical tasks that I seemed to still be able to do. Within a few weeks, however, those abilities were gone too. Iâ€™ll never forget how it felt to call my best friend, colleague, and boss to tell her that I couldnâ€™t do it anymore and I had to resign my position. We had been having babies and working side by side since 1985. That was hard. It was hard to clean out my office and see my work in garbage bags lined up along the wall. The only work I saved was my beloved trauma manuscript in the hopes of regaining enough cognitive functioning to complete it in the future.
b

Iâ€™ve worked since I was 19 years old and never imagined life without a job. Not only did I always have a job, but almost all of my identity was synonymous with my work. Giving up my career was the hardest thing I ever had to do in my life. This marked the beginning of my battle with finding a new identity. Jeeeze. How many times do we have to go through adolescence before we graduate?
b

...continue reading My Story Begins

Coping with Chronic Illness: Ehlers-Danlos Syndrome » Ehlers-Danlos Syndrome

God’s Fire

When The Answer is Clear: Stage I

Lots to Think About Now

My Story Begins