The Elusive Unicorn

As I stumble through the blustery winter winds, it occurs to me tonight, while nursing yet another sickness (throat infection) that my immune system is anything but immune.  It’s never reliable, never resilient, and part of me wonder why I even bother attributing one to my body.

From my birth, when I emerged so ill that I nearly died and needed an incubator, I have been a sickly child.  Nothing in my body has ever quite worked properly, so much so that, to spare any dire errors if incapacitated, I have a full page of typed medical conditions and allergies wrapped around my health card.  For me, an immune system that works has been as elusive and mythical as a unicorn – although I sometimes believe the unicorn more likely to turn up in my apartment than good health.

I often wish I wasn’t utterly hopeless at advanced Physics and Chemistry, because I have quite a knack for diagnosing myself and others around me.  Having read a multi-volume medical health encyclopedia for fun at the age of 10, I’ve always been fascinated by the human body’s many potential failings.  I’ve self-diagnosed a few key ailments, correctly diagnosed a few close friends as well.  I’m usually everyone’s go-to girl for medical questions now, and I’m always happy to offer my knowledge and intuition up.

Maybe if I were a doctor, I wouldn’t be in the situation I find myself in now.

This isn’t the first time in my life where I have knocked on door after door, confident of something being wrong with my body and having my personal observations dismissed or disregarded, to my own detriment.  In 2006, I suddenly became extremely ill, having frightening episodes of shortness of breath and dizzy spells.  I could no longer handle short flights of stairs.  My heart would pound and I would feel as if I were dying.  I also had episodes of my face going numb, but that is a whole other matter.  At the same time, my long-existing stomach disorder (IBS) went nuts and stopped responding entirely to my daily medications, drugs that had worked for four years admirably well.  Over and over, I pointed out the stomach angle, only to have it chalked up to stress and get told to double my dose (for the record, it didn’t help).  They checked my lungs, my heart, and found nothing.  I wore a tedious heart monitor strapped to my waist even, and it made me homicidal.  A few months after giving up on the ‘anxiety attack’ touting doctors, I was stricken with the worst heartburn any human has suffered, for 7 straight days.  After initial exams and tests, I was diagnosed with GERD – chronic acid reflux.

I had a two year period of reflux at the age of 16.  My symptoms were consistent, and the excess acid fully explained my stomach’s poor reaction.  In fact, the doctor that finally solved my issues with another handy pill agreed that someone should have clued in from the start.  Thanks, medicine.  I was told I had ‘marked scarring’ of my esophagus, but ‘luckily, no sign of cancer’.  It was that dire.

Almost four years ago, I injured my right ankle severely and, like every other joint injury I sustain, it refused to fully heal.  Again, numerous specialists and physiotherapists prodded and poked at me, with wonderful theories and no real answers.  I have a family riddled with arthrtis, so they tested me for a marker known as antinuclear antibody.  It’s basically a generic red flag for autoimmune disorders, ranging from rheumatoid arthritis to lupus.  I came up as a weak positive, and was sent to a rheumatologist, completely unsurprised by this prospect.  A retest and more in-depth blood work came up negative, and in spite of my symptoms, family history and the rate of false results, I was shooed out the door for taking up said specialist’s precious time and continued to live in pain.

For the last year, I have insisted that my body just isn’t right.  Being unlucky and clumsy as hell, I have injured and now suffer chronic pain in my left knee, right ankle, right hip, lower back, left shoulder and arm and my neck.  Each ailment flares up and down at random, no rhyme or reason.  Physiotherapy doesn’t do shit beyond a certain ‘almost okay’ level.  I can’t take daily anti-inflammatories because of my stomach, leaving me with a developed tolerance for aching.

Puts a serious damper on my love for general admission concerts, lemme tell ya.

I found a new family doctor this summer, a rarity in my city due to its population and the lack of available physicians.  In my first interview, she takes a look at my plethora of symptoms and promptly asks if anyone has ever mentioned ‘Crest’.  Confused about the relevance of toothpaste, I ask her to explain.  Seems there’s an autoimmune disorder out there called Limited Scleroderma, or CREST syndrome (the acronym doles out the five core symptoms).  We review them and I go home, shaking and realizing I have four of five.  My respiratory health has taken a sharp decline without explanation; CREST can create blockages in the lungsm reducing capacity.  Reflux?  CREST causes that too, due to abnormalities in the body tissues.  Spider veins?  Check.  Raynaud’s Phenomenon, an affliction of the hands and fingers where cold sends all circulation running away and leaves them white and icy, is a problem I’ve had since my teens. But it’s the joint issues, where CREST creates pressure due to abnormal collagen, that should have screamed out to someone I saw:  multiple GPs, two rheumatologists, three physiotherapists, and a gastroentologist.  New doctor retests me for that pesky antinuclear antibody:  it comes up positive.

I shake my head and sigh.  Three years ago, someone could have kept asking questions, could have tried to help me as I insisted something was wrong.  Instead, I was shoved out and ignored.  And now, if further tests prove it is indeed CREST that causes my issues, I have lung damage that might have been prevented, if my symptoms are an indication.

Fitting, it seems, that for a woman who’s never been able to develop a strong immune system against anything, even the flu, that an autoimmune disorder would crop up.

The moral of this blog, dear friends, is while armchair diagnosis often veers for the worst possible scenario (and the unlikeliest), knowing all of the possibilities and demanding answers for your questions can often keep doctors working for you, as opposed to working to get rid of you.  Never be passive about your health.  My grandparents were aggressive and still ignored, until the cancer they instinctively knew my grandfather had was terminal.

As for me, I’ll be fine, no matter what the next round of pokes and stabs and scans brings.  After spending so many years dealing with one problem after another, I can only do my best to stay comfortable and healthy.  This isn’t to say that an incurable and, at times, fatal disorder (or one that leads to emergency amputations of digits) isn’t a horrifying prospect; it is, and once in a while, I cry it out for a minute or two.  But until I know what is and isn’t wrong, all I can do is push for more information, now, immediately, yesterday.

And look for that damn unicorn.  Because I know it’s out there.

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One thought on “The Elusive Unicorn

  1. doctorblue says:

    Hi Amber. It might be little consolation, but I have the same symptoms you describe and got the same “high anxiety” dismissive diagnosis from several mainstream medical doctors in the U.S. I self diagnosed and finally found an integrative doctor (who doesn’t accept any insurance) who is treating my arthritis with IV and oral Colchicine. It’s an anti-inflammatory medicine that I tolerate well despite major colon problems.

    I documented parts of my journey seeking competent medical care at http://doctorblue.wordpress.com. I’m about a year and a half behind on my posts because I’ve been spending the time I’m not seeing doctors on dealing with the financial repercussions that go along with becoming disabled. I give you a lot of credit for being proactive and researching your symptoms and test results. Best of luck.

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