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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. 

My Life As I Know It Now


by Lisa
January 2006

Before this experience I had a different perception of doctors; I never doubted them.  I was lucky to have only my regular checkups, and for my few, small medical issues, the doctors were always able to come up with an answer to fix the problem.  I had only dealt with doctors over simple matters, but had witnessed family and friends deal with them for a variety of medical conditions.  Occasionally it took a lot of testing and some time to get to the diagnosis, but the doctors always came up with a treatment plan, whether it was surgery, medication, or some lifelong management of a condition.  But now I have been exposed to a whole new side of the medical field.  I never imagined I would run into the situation where I would present my symptoms to the doctor, have numerous tests come back abnormal, and then they would say “I don’t know what’s going on.” 

I found myself frustrated back then, and now, more than two years later, my frustration has reached an all time high.  I now have experience dealing with many healthcare facilities and doctors.  I’ve had some great experiences and some horrible ones at most of the facilities I have visited. 

Medicine, as I’m constantly told, is not an exact science, and therefore doctors do not have an easy job.  They have worked very hard for their credentials and for their positions.  Not all medical cases are by the book, and a good doctor has the ability to think outside of the box.  Many doctors are inclined to be analytical rather than creative, imaginative, and sympathetic.  Doctors encounter different issues everyday in their line of work, and people’s lives are in their hands.  Doctors’ jobs involve a lot of problem solving; most patients don’t have all the textbook symptoms. (I wish I had a more textbook case.)  Some go by the books, but I’ve learned that cases aren’t always that simple. 

When a doctor is going over test results with me, they almost seem disappointed when, for instance, a brain MRI comes back abnormal with unspecific findings.  It’s as if it would be easier to have something easily identifiable, such as a brain tumor.  It’s so hard when doctors keep finding things wrong and discovering all these abnormal tests results, but cannot give me an official diagnosis.

I keep getting diagnosed with various conditions.  Almost every part of my body is affected, but all of the findings turn out to be “non specific.”  I still feel so helpless because I need my doctors’ help determining the underlying cause.  Doctors are having a difficult time putting together the various puzzle pieces of my symptoms and abnormal tests.  I keep being told that my condition is rare.  Doctors are decision makers; although, in my experience, they do not always agree with one another.  Some doctors have very conflicting views.  Since I’ve been diagnosed and undiagnosed with certain conditions, I am learning that very little is conclusive in the field of neurology.

I’ve been told the worst news by some doctors.  They say that I may never get better and I’ll just have to learn how to live with my symptoms.  Other doctors tell me to look on the positive side of things.  They say that they are not giving up on me, though I am not their typical case.  I have not responded well to any treatments, and no symptomatic relief has done much for me yet. 

More has to be done, and I’m not one to give up.  Everyone must be a leader for his or her own care; you cannot sit back and wait for things to happen or you will be forgotten in the healthcare system.  After all, you are the most important member of your healthcare team. 

Research is being conducted for many of these neurological conditions, and the doctors say they are learning about some of these disorders right along with me.  The doctors tell me how frustrated they are in what they don’t know about these conditions, but at least they can go home at the end of the day and function.   Doctors, as leaders, should use the resources at their disposal to help patients.  They should not give up on their patients and tell them that they may have to wait until they get a lot worse to find out what’s happening.

The autonomic nervous system affects basic bodily functions vital for living, and therefore, disease of this system interrupts many facets of how the body works.  I have seen numerous doctors in many different specialties, and I know that I am a complicated case.  It is hard to get someone to look at the whole picture.  Doctors seem to only care about the abnormalities in their own specialty, but my varied, seemingly unconnected symptoms may be related.  What can I do?   There is only so far I can get without these doctors, and all I want is to be able to function again in some capacity.  I feel like so much of my time is spent waiting for test results or for the next appointment.

Many doctors seem to be so wrapped up in their research, or another aspect of their job, that they seem to have forgotten why they went into medicine in the first place.  In a perfect world, doctors would work together and the patients would be the most important thing, but in many instances that is not the case.  Doctors seem to want simple cases and do not want to spend the extra time investigating mysterious cases.  They just pass those off to somebody else.  A good doctor is aware of their strengths and weaknesses; they may not always have answers or solutions, but should try to use the resources at their disposal to get them.  Doctors have the power to change things.  They have the ability to accomplish so much.

Before all of this, “dysautonomia” was never a word in my vocabulary, but it is a word I now use regularly.

“Dysautonomia literally means dysregulation of the autonomic nervous system.  The autonomic nervous system is the master regulator of organ function throughout the body.  It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions.  Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates.  For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.” (www.potsplace.com)

The latest condition I have learned about is mitochondrial disease.  The abnormal muscle biopsy I had indicates that I could have this condition, which can vary in type and severity.  This is a group of neuromuscular diseases that are usually genetic and most often affect children.  There is no cure for mitochondrial disease.  At first, I thought it was a definitive diagnosis, and I was prepared to move forward with this.  I have now learned that although I have a mitochondrial dysfunction, which will never go away, this may not be my definitive answer.  Even if I do have one of these neuromuscular diseases, the doctors have absolutely no idea which one, and there would be nothing they could do for me anyway.

I feel as if I have an invisible illness at times.  When people see me, I often don’t look sick, but people don’t know what is going on inside of me.  I have so many pieces of different diseases, and it would be bizarre if they weren’t all connected somehow.  I never thought with today’s medical technology that it would take so long for me to be diagnosed and treated.  I’m still hoping that day will come soon.

People don’t understand what it is like for me to live day by day.  I even forget what it is like to feel healthy.  I haven’t felt right since Thanksgiving Day, 2004 when this all suddenly began. When I woke up that day I felt fine, but I became sick later that morning.   I thought it was just the flu, but then it never went away. 

Among all the other symptoms I experience, the dizziness and nausea are by far the worst.  I am dizzy and nauseous, to some extent, every minute of every day.  There are times when these symptoms are better than others, but my symptoms are unpredictable, which is one of the most frustrating issues.  I never know when I’m going to faint or when I’ll have to use that plastic bag that I always have with me in case I need to vomit.  My other symptoms (like abdominal pain and headaches) are a nuisance, but they are not the ones that keep me from functioning.  I experience numbness, tingling, and some loss of feeling of certain body parts.  I also cope with painful burning sensations in my hands and feet as well as poor hearing at times.  I’m sensitive to light and always feel dehydrated.  I deal with tachycardia and can’t even shower without feeling faint or the fear of burning myself because my temperature perception is disrupted.  The worst problem, by far, is the unpredictability.  If my symptoms weren’t so unpredictable I could possibly hold down a job, but even when I am able to accomplish things, I can never do anything for too long before my symptoms become unbearable. 

My life may never be the way it was as I knew it.  I can handle that, but there has to be something out there that will get me functioning again.  I want to resume my life, even if it’s not the way I was living before this illness.  I just want to resume some sense of normalcy.

There were so many things I took for granted.  People often do not understand how my body cannot do the things most people’s bodies do subconsciously.  Then again, I also do not understand how one day my body suddenly decided to stop compensating for gravity after I had happily lived with it for so many years.  At times I feel helpless.  I’ve always been an independent person, and now I find myself relying on others for basic tasks.  I cannot drive.  I’m constantly dizzy and getting sick.  I have trouble reading, filling out forms at doctors’ offices, and even emailing takes a lot out of me.  Sometimes walking is hard, but there are other moments when I cannot even stand without fainting.  It’s hard to sit back and wait like doctors recommend, often giving me no choice in the matter.  I constantly find myself, despite the advice of my doctors, pushing to do more, even though it makes me sicker.   I’m sure that they couldn’t just sit still and wait on others to determine their quality of life.

You learn a lot about yourself and others through an experience like this.  I have had a lot of time to step back and reflect on things, to re-evaluate my life, and to change how I want to live it.  I have been exposed to a whole new world and feel that this experience will make me a better leader in the future.  I just wish so much suffering didn’t have to be involved.  Sometimes it’s hard to remember the rest of the world has continued moving while my world has stopped.  Day by day, nothing seemed to change, but then I noticed everything was different.  The future is always uncertain in this unpredictable world. 

Through this experience, I’ve never felt so motivated, yet so physically unable to do things.  I have a better idea of some things I want to accomplish, though.  I hope that in the near future I will be able to put all this energy to good use, once my health has improved.  I would like to help those people out there who find diagnosis a mystery.  I don’t want anyone to go through what I’m going through.  It’s hard to have a rare disorder with which people are not familiar.   

“Everything is okay in the end; if it’s not okay, it’s not the end.”- Anonymous.  I guess I will have to let life turn its own pages, because right now the end of this book is unwritten...

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