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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

One Day at a Time


By Sue
November 2007

Hi--my name is Sue; I'm 45 years old and live in Rochester, NY.  I guess I'll start at the beginning.

I was adopted at birth and was raised with a brother and sister (also adopted but not related).  We were an average family; my parents were very Catholic and loving.  At about age 4 or 5, I wasn’t able to stand or kneel at church without feeling like I was going to faint.  I knew when I needed to sit and just dealt with it that way.  When I was 6, my mother became ill.  After years of wrong diagnoses and a stay in the psychiatric ward, she was diagnosed with multiple sclerosis.  It must have been so hard for her, but I don't remember.  She passed away when I was 10.

My father remarried the next year.  Boy, did I give my step-mother a hard time.  Now, as an adult, I thank God for her every day.  My near fainting continued, and I just dealt with it.  I was very much a tomboy and was very active in sports until 9th grade.  Then as time went on, I realized that my energy level was decreasing. I didn't want to do much of anything.  I couldn't stand for periods of time.  I felt lazy and different.  I thought it was due to starting menstruation and painful periods.  So, I just learned to cope.

When I was 17, my father passed away from a heart attack.  It was so strange-- I kept thinking that if my father hadn't remarried, we would be orphans. I seriously don't know what we would have done without my mom.   I kept worrying about the funeral.  Everybody stands and talks, but I knew that I couldn't do that.  I kept thinking that everyone would think that I was rude and didn't care because I was sitting and not making an effort to greet people. That still kind of bothers me.  Well, life goes on. 

When I was 19, I met my future husband.  We were together for 4 years before we got married.  I always felt like I was lazy.  I never liked to cook because it took too much energy.  I would clean, but I became exhausted easily.  I was getting one bladder infection after another.  The doctors just kept prescribing medicine.  They did send me to a urologist to dilate the urethra; that didn't last too long.  So life went on.  We got married in 1985 and soon after, we had our first daughter.  My husband was finishing up graduate school, and I was working in accounting at a mortgage bank.  There were no problems with the pregnancy, and Stacey was perfect. 

My husband graduated in 1986, and we moved to San Antonio.  Our second daughter was born there.  Again, the pregnancy went well.  After Shannon was born, I began having major problems with diarrhea.  That only lasted for a few months, but minor symptoms have been present since.  We noticed that Shannon didn't seem to progress as well as Stacey.  Because of “mother's intuition,” I never gave up with the doctors.  When she was in 5th grade, she was formally diagnosed with a non-verbal learning disorder with neurological and cognitive deficits.  Thank God that she had been in special education since age 3.  Anyhow, in 1988 we moved to Vermont since my husband had gotten a job with IBM.  I was a stay at home mom and advocate for Shannon. 

In 1990, our son was born.  My husband cried.  He was a great dad.  When not at work, he was always with the kids-- a big kid himself.  A lot of times, he would come home from work and take the kids out to do random things.  I would stay home on the couch, too exhausted to move.  That still bothers me to this day.  I (we) missed out on so much because of me.

Our son Tim also had special needs but not as much as Shannon.  I still, to this day, advocate for him.  We, my husband and I, could deal with anything that life threw at us.  We were a great team.  In March of 2000, out of the blue, my husband had a seizure.  That night, he was diagnosed with a brain tumor.  Boy, talk about life changing.  We went to Boston for surgery.  They removed 98% of the tumor.  It left him temporarily paralyzed on his right side.  We brought him back to Burlington for a month in rehab.  During this time, I was diagnosed with hypothyroidism.   My husband passed away in July of 2000. 

In October of 2000, I moved the family back to Rochester to be near family, friends, and my husband, whom I had buried there.  My health was the same; I had near fainting, constipation, bladder infections, exhaustion, but life goes on.  I met Andy in late 2001.  Our relationship grew, and he moved in with the kids and me.  In February of 2005, I had the worst headache of my life.  I went to the emergency room and had a CT scan and spinal tap.  Both tests were normal.  Thank God I had no tumor; that's all I could think.  Well, the headache still hasn't gone away.  For the past 2 1/2 years, I've been to all types of doctors.  First, they told me it was stress, then a possible spinal fluid leak.  I was sent to a neuro-ophthalmologist at the University of Rochester.  She put me in the hospital to try to break the cycle of headaches.  It didn't work.  But, they did notice that I was having problems with my blood pressure.  It was very low, especially in the am.  I was referred to a cardiologist for further testing.  They did testing in the office which showed that I had orthostatic hypotension.  After that, I had a tilt table test.  Well, I failed that big time. As I did research online, I started to get the idea that all of the health problems I'd been dealing with might have a collective name. 

I continued to tell the doctors that I had trouble standing for any period of time, numbness and tingling in my head, along with the pain.  When I walked to the fridge, I’d be out of breath and sweating like a pig.  I also had many other symptoms.  This headache was ruining my life.  My husband was doing research for me and found POTS.  I laughed at him, but as time went on and I did more research, WOW, it answered so many questions.  It helped me see why I always felt like I was lazy and why some days I couldn’t even get out of my chair.  I'm not insane.

We talked to my doctor who agreed that it was POTS and referred me to an autonomic specialist.  Now the problem is that this specialist has old, broken equipment and is waiting for parts.  Figures, huh?  So for now, I am taking Celexa, Synthroid, Dexedrine, Vicodin, Compazine, Dilaudid and Restoril. I still have my daily headaches, some much worse than others.  Some days are good, but I have continual nausea, numbness and tingling in the head, definite brain fog, problems with coordination, and constipation.  I guess I just need to wait for the specialist to fix his equipment.  At least there is a name for this condition.  At least I'm not insane.  At least I have a loving and caring husband and kids to help me.  And life goes on.

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