Friday, April 02, 2010

sixteen years of chronic illness

The first time I had chest pains, I think I was fourteen years old. I remember that I ended up seeing a pediatric cardiologist, who did some kind of tests (I guess), and then told my mother that although I was definitely feeling real pains, he did not know the cause. My mother got mad, as was her usual reaction to things, and blamed me for supposedly making up the pains. I never made up any pain in my life. I did learn to keep my mouth shut about real pain, though.

I got sick when I was nineteen years old. That was 16 years ago. I was working at a library, and I will never forget how the pain began. I first had a horrible headache, which I attributed to sinus congestion. I was taking Ibuprofen and cold medicine, but I would end up bent over the steering wheel of my car in agony, because my head hurt so badly. Then the pain spread, out into my legs, my back, my arms, my entire body. I hurt, literally, all over. I remember lying on the couch wondering if I had gotten some kind of cancer that spread to the bone, or if I was dying of some other disease, because I was so very tired, unreasonably tired, and was in intense pain. I had to quit my job at the library. I kept my other job, which was at a telephone call center, but went for months without working at all.

I started seeing doctors frequently, trying to find out what the problem was that was causing all these weird symptoms. I had strange symptoms, like a weird rash on my leg that wouldn't go away, and that a doctor told me was a definite sign that I had an immune system problem. I had stomach problems, so I got diagnosed with Irritable Bowel Syndrome. And the pain was attributed to Fibromyalgia, which was, back then a catch-all diagnosis given primarily to women whose symptoms were not easy to diagnose. It meant that I was also being viewed as someone whose pain was all in her head. I was given antidepressants and told to take it easy.

I would never have believed, back then, if you told me that I would still be dealing with physical illness, and still getting tests, and yet, not killing myself, sixteen years later. I really thought I would have to get better, or die, eventually. The facts of chronic illness are not part of our public dialogue. People assume that an illness is, just that, an illness. Not a permanent fact of life. But the most common disability in the United States today is actually chronic illness. Chronic illnesses are not recognized as real problems in emergency rooms, like acute conditions are. So I would end up in emergency rooms, being told that there was nothing wrong with me other than my mind, and that there was no reason I should feel like I was going to faint every time I was on my feet for five minutes. I found out, through reading, that I had all the signs of Chronic Fatigue Immune Dysfunction Syndrome, and also, of Neurally Mediated Hypotension, also called Chronic Orthostatic Hypotension. In 1999, I saw a doctor in Washington D.C. (I was living in Baltimore then) who diagnosed me with these problems, as she was a specialist in that area. I was 24 then.

At 24, I also became psychotic, so keeping up with all those medical tests and appointments wasn't something I was able to continue doing the way I would have if I had no mental health issues. I did get told by an eye doctor that I had Sjogren's Syndrome, at 24, because my eyes were so horribly dry, they burned and felt like there was sand in them, and my vision was suddenly poor. Today, I am still being treated for Sjogren's Syndrome.

Today, I am thirty-five. I have been physically sick for sixteen years. I have been told that it is "probably Lupus", "Rheumatoid Arthritis", "Mixed Connective Tissue Disease with Fibromyalgia and Sjogren's Syndrome", "Orthostatic Hypotension" and Peripheral Neuropathy, some sort of autoimmune diseases or some combination therein. I have had abnormal bloodwork that showed I have an autoimmune disease. I have had horrible fatigue and spells of falling down because I was near fainting. I have been through many, many, many medical tests. I have been quite sure, at times, that I knew the problem was a form of dysautonomia, such as Chronic Orthostatic Intolerance or Postural Orthostatic Tachycardia Syndrome (another thing I had all the symptoms of, which is related to Chronic Fatigue Syndrome and Fibromyalgia and autoimmune diseases). I have had test results that showed orthostatic hypotension, arthritis of the cervical spine, a vestibular disorder, Endometriosis, inflammation of the stomach, and other issues. I have seen neurologists, gastroenterologists, rheumatologists, opthamologists, endocrinologists, psychiatrists (obivously), dermatologists, gynecologists, ear-nose-and-throat doctors (whatever "ist" that is), an interventional radiologist (who offered to do surgery), dental clinics (dry mouth from Sjogren's causes severe dental decay) and, most recently, a cardiologist.

To say that I got tired a long time ago of going to doctors and getting medical tests done would be an extreme understatement of the pathetically obvious.

I have gone through periods of denial, too. Most recently, that was the past two years. I decided I was healthy now. I decided that I didn't really have the orthostatic hypotension, anymore, and so I went off the medications I took for years to treat it. I noticed no major differences after going off the meds, which further influenced my thoughts that "I'm better now". I also kind of figured that the universe would only hand out so many health issues per person, and I had surpassed the limit, so I should be okay in the future. I figured Schizoaffective Disorder or Schizophnrenia was as much as I could handle, and so I chose to believe it was the only problem I had.

I was wrong. I deceived myself.

Today, I have all those signs of dysautonomia, just like I did ten years ago. A few years back, some friends and I created an online support group for women and girls with chronic illnesses and other disabilities, called Sick Chicks and Twisted Sisters, and in 2002 I created the website at I later abandoned that website, as did my friends, and decided to try and put the whole illness thing behind me, if possible. It turned out not to be possible.

I'm tired. I have chest pains. I'm wearing a heart monitor right now for two weeks. This is pointless, since, most likely, nothing will show up on the heart monitor. I have no faith in Western medicine anymore, most of the time, so I no longer get interested in whether or not some stupid test shows what is wrong. Most of the time, they don't. I have really started to lose hope lately, when the fact that I am not physically well has been so blatantly obvoius, particularly a couple of weeks ago when I was rushed to a hospital in an ambulance, barely conscious, from a restaurant where NOW was having a meeting. When you're losing consciousness, it's hard to pretend you're fine in order to let other people have the ease of not knowing you're not fine.

So, I'm not fine. Too bad if others in my family or people who don't know much about these illnesses do not believe or do not care to know about any of this. It is the reality of my life. It is not my only reality. I can still have hope and still be happy, and still be a regular human being. But I'm back at the point where my health is greatly influencing my ability to function on a daily basis, my ability to go to college classes, my ability to work, everything. And that is really damn depressing and discouraging. I am trying not to lose hope.

There are videos on POTS and related illnesses on Youtube. Here is the link to one. This may or may not be the crux of my problems. I may never really know for sure. I do believe it is, based on my sixteen years of experience, but then, I'm not an M.D. Like a woman who spoke at the recent Florida Consumer Conference NAMI held here, my only qualifications behind my name are I.T.E. or, "I'm The Evidence". With these qualifications, I can state that Postural Orthostatic Tachycardia Syndrome, an illness many doctors have no knowledge of because, like many illnesses that primarily affect women and are not easy to diagnose, it is not considered all that important by Western medicine. So now you might understand why I don't have much hope for Western medicine helping me.

I broke down and cried in misery today, and some other days lately, because I JUST WANT TO BE ABLE TO LIVE MY LIFE. I do not enjoy being sick. I do not get any benefits from being sick. I don't know a lot of people who even know that I am sick, because it is not something I ordinarily advertise about myself, and because, I don't "look sick" (whatever the hell that means). A lot of people who didn't look stupid have looked at me and assumed I didn't look sick, but many people do not realize how many illnesses there are that one cannot necessarily see by looking at a person, even when they are seriously debilitating. I just want to finish college, keep my job, and be able to do a few enjoyable activities. That is all. I want to be able to exercise so I can lose more weight, but right now, I cannot do that. I will not, under any circumstances, agree to go back to being bedbound like I did for a few years in the past. I will not put up with that, which is why I am going to doctors (still) and getting (still more) tests done.

When I walked into the cardiologist a couple weeks ago, they hooked me up immediately to a heart monitor because my pulse was 136, for now apparent reason, while I was sitting in the chair there. There is definitely something wrong with my body. I just need the damned proof of what it is to get it effectively treated. I wish it was "all in my head", since my choice would have been to get rid of it a long time ago, and if it was all in my imagination, I certainly could have done that. Unfortunately, it isn't. And I don't want to be part of that statistic that says people with illnesses such as Schizophrenia die 25 years early because when they get sick, they do not get good medical care. I am not going to agree to die young because somebody can't figure what the hell is wrong with my body. I want some damn answers. That is all.


  1. Could be POTS! There is quite a simple test you can do at home to see whether it is likely you have postural orthostatic tachycardia:
    1)take your heart rate when you're lying down and resting
    2) stand up and stand very still
    3) take your heart rate after 1,3,5,7 minutes (help to do this is advisable)
    If your heart rate rises>30 beats per minute then you may have POTS.

    Some of your symptoms may improve if you increase your water intake and salt intake (check with your doctor if high salt is ok for you)

    You can check my blog for more info on feeling better with POTS at ;-)

  2. Jen...I am so sad to read how awful you feel...hoping today will bring you some relief...


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