Although Zebras are beautiful creatures, when doctors use that term it brings back so many negative memories and a time of uncertainty for me.
My Little Secret
Let me tell you a secret, I normally don’t speak much about my “real” life on here. Although I do have a page about being a P.O.T.S Mom, I don’t like talking about it. When I say “real” life, I mean as a person dealing with an illness. I have noticed that there is a preconceived notion if you talk about being sick it is a sign of weakness or whining. However, I need to start being straight up with all of you on how I am dealing with this. Hopefully I can start spreading awareness about this condition. I wasted 18 months of misdiagnoses and do not wish that on anyone. So here goes!
My journey with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome started way before I had to stop working as a Registered Nurse in 2009. I frequently changed jobs to accommodate myself as these strange new symptoms arose. At the time they were vague and sporadic. When the tremors began in 2004 I was working in a NICU and no longer could safely perform the basic care needed for the premature infant. I was dropping things, lightheaded and having palpitations. I had to change jobs three more times before all the symptoms arrived at once and I could no longer work.
I was almost fifty years old and of course the doctors automatically said it must be anxiety and prescribed pill after pill. I balked at the idea, I couldn’t understand how by just walking a few steps to the kitchen which made me short of breath, tachycardic, chest pains, palpitations, lightheaded and nauseated would be caused by anxiety. As soon as I would lie down most of the symptoms would disappear. So I was “anxious” only when I walked but once I arrived to the couch or bed somehow the “anxiety” was gone?
After eighteen months of countless tests, medications and appointments to numerous doctors, they were all seemingly brushing me off as a mental case. They never actually said those words but I did feel that was what they were thinking. They did however call me a “zebra”.
From Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other [common] diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.”
I became increasingly frustrated and angry and decided to take matters into my own hands. My financial situation was in the toilet, I had one son in college and another on his way and debt collectors calling me all the time. Now THAT was indeed making me anxious!
I didn’t have black stripes and I was darn sure there had to be a name for what I was suffering with and it was not “zebra”. I began researching more about my symptoms and eventually found what is currently my diagnosis.
I also found that the University of Washington Neurology Clinic had the only Autonomic Dysfunction testing center in the area, and to my surprise only one Neurologist who specialized in it. At my earliest cardiology appointment armed with a printout of several pages of symptoms, I asked the cardiologist if he thought this could be what I had. He said it was possible, however he was not sure how to treat it. So thankfully with the Neurologist’s name in hand, he gave me a referral.
I had to wait over four months more before I could see the Neurologist, I later found out that apparently I was not the only one with this diagnosis. When I finally had the testing it was confirmed that I have an “invisible illness” called Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.
After speaking to Dr. Oakley in 2010 a strange relief swept over me. It wasn’t that I was glad I was sick, but I was glad that there was finally a diagnosis, a name for what I had. I was also extremely grateful that there was a doctor that knew how to treat this condition. I was hopeful that now I would start seeing some relief from these symptoms once the proper treatment began and maybe in the near future get back to work.
As I am writing this it is currently mid 2015. Although I haven’t been able to get back to work, some of the symptoms have decreased with medications, while others have increased or remained. It is pretty tricky to treat and I am happy with even the partial symptom management.
Being on the couch most days and barely being able to do anything is pretty depressing. You also gain weight when you do nothing! What a surprise! I realized that when I ate anything with the bad carbohydrates, sugars and meats I felt sicker, I would actually pass out and wake up a few hours later not even remembering lying down.
Diet and Exercise
Recently I watched the movie, “Forks Over Knives” on Netflix, you can read more about it here at, “Journey from Meat to Tofurkey”. So we have been eating more vegan & gluten free recipes. I will be writing more about this in future posts.
To validate even further how much I feel diet plays a big factor with this and many other conditions, I found this article about Ella, a nineteen year old who suffered with POTS as well and how she started to feel better after changing her diet, “The Recipe That Launched a Book Deal” by Christina Liva.
Having an invisible illness can be a struggle. People can’t see what is going on inside of your body. They also can’t see the loss of identity that occurs when you no longer can do the things you used to do. I was a Registered Nurse, that was part of who I was. The difficulty trying to remember simple words is hard enough, such as trying to write this or any blog post. I no longer remember many of the things I learned in over thirty years of nursing.
If I am out, the first thing I do is try to find either a couch or chair to recline in. I spend a lot of time on my couch or on the bed at home as well. My kids know where to find me!
Please help spread awareness:
I am hopeful that changing my diet and including some exercise will help me overcome many of the symptoms I deal with on a daily basis. As we try these awesome recipes I will share them with you and also any results I am having. So far I have lost another ten pounds and I am very happy about that!