Monday, 21 November 2011

Lost in Limbo...

I am writing this for the PFAM which is hosted this month by FibroDAZE, Kathy over there is asking about how we cope with new diagnosis.

Right at the moment I am in a place of great uncertainty and I'm picking my way through a minefield of doctors appointments.  One of the reasons why there is so much happening at the moment is that my health was sorely neglected when I was in the US.  I didn't have any health insurance for my last year there and so I was just muddling on alone.

When I returned to Australia, where, thank the Goddess, we have universal health care I was able to begin to get some of my health issues taken care of (I hoped)...  In actual fact so far, in the two and a half months since my return home, I have received a couple of different diagnoses.

Just a tiny bit of background - in 1994 I was incorrectly diagnosed with Osteoarthritis and basically told "welcome to middle age".  Then followed several years of dancing with various anti-inflammatory drugs all of which caused strange and unpleasant events (like serious depression and hives) until the doctor finally became concerned that my allergy to NSAIDS was going to result in anaphylactic shock if I kept taking the NSAIDS with an anti-histamine chaser.  I then resigned myself to living with constant pain with only over the counter paracetamol/acetaminophen to help.  This went on, interrupted by occasional doses of Vicodin, Percoset and Lortab, until 2009 when I was finally diagnosed with Fibromyalgia.

Back here in Australia I have now started to nail down some of the more specific either parallel or contributing conditions.  First the Rheumatologist (Professor McAwefullyCute) informed me that I have "An undampened stress response resulting in widespread chronic pain"   That's all well and good but it doesn't account for all the other problems that plague me...  Next came a brand new diagnosis of Hashimoto's Thyroiditis, diagnosed by the Endocrinologist, and the probability that there is another auto-immune disorder.  So off to the Immunologist (Professor McCool) who took enough blood for testing to feed the entire cast of Twilight, and arranged for an MRI.

I feel very unstable about my diagnosis at the moment...  I know that McCool is checking for some things that are very frightening like Paraneoplastic Syndrome - which could mean I have Cancer somewhere in my body that is undiagnosed.  I have another week to wait before I hear the results of these tests.  I know he's looking at Lupus, Addison's, MS, Sjogren's etc etc etc...

When you live with a diagnosis like Fibromyalgia it kind of places you in a difficult position,  Because it is a diagnosis of exclusion and to be honest I don't think my doctors in the US really did enough testing to have positively excluded this range of other auto-immune conditions.  This places me on the horns of a rather interesting dilemma...

Do I want these tests to find anything?

Anyone who has lived for a long time not knowing why they feel crappy all the time, why they hurt all the time, why they are so tired that shampooing their hair knocks them out for an hour, will know what I mean...  There is a part of me that desperately wants to know what is causing all this pain!  But I don't want to hear terrifying news that my own body is attacking my brain or that I have Cancer.  I would love a new diagnosis if it was something that could be managed... hell I might even get better!

The Hashimoto's diagnosis was good news... something that can be managed reasonably well with non-invasive synthetic hormone pills... easy...  I might even feel better than I feel at the moment when the thyroid pills start to take effect...  On the down side I am very cognizant that one auto-immune condition frequently leads the way for one or more others.

I guess, in my roundabout way I am trying to say this...  A new diagnosis can be a thing of beauty, it can take you from despair to hope in the blink of an eye!  It can also be a frightening slap across the face with your mortality.

One week from today I will know much more - until then - welcome to my limbo land.


  1. Hey Displaced, great posting. Love the Twilight reference!

    I agree, it's a rock and a hard place.

    Hmmm, having fibromyalgia is enough of a slog, but thinking about additional issues is scary. I also wonder if the medical system is cut out for complex people like us...?

    I really don't think that FM travels solo. It comes with such a host of concurrent conditions it makes sense that something else is out of whack. It's just a matter of finding someone willing to dig and dig- sounds like you are finally getting somewhere (for good or bad).

    Thinking of you and keeping my fingers, toes, and eyes crossed.

  2. If the tests reveal something that can be treated which can make even a bit of difference, that will be a real shot in the arm (one that't hurt). Fingers crossed for you that something positive comes out of being a human pincushion for a day.

  3. Displaced, I know just how you feel. I think it's natural to have that ambivalence about diagnosis, or to at least hope it's something treatable, rather than a "mystery disease" or something dire. Though what I seem to be learning lately is that even after you get a diagnosis, things keep changing. And the waiting is SO HARD. Hang in there. Diagnoses are labels after all. Useful, because they tell us what kinds of treatment might work, but labels none-the-less.