November 24, 2010

Life with a Chronic Illnesses: The Pirate Prognosis

Bear with me.  I'll admit, this one's going to sound like a groaner up front but I think you'll enjoy it, so just hang in there...

As you may have noticed, I've had some ups and downs lately.  As you CERTAINLY know, that's par for the course with any chronic condition, and one that responds to changes in weather, stress, and everything else under the sun guarantees at least a few of these trips in a year.  When these loopdeeloops show up, we have to keep relearning some adaptive behaviors (especially if you're like me and seem to forget these lessons). 

Recently, I was discussing some of these refresher lessons with my husband and came to a revelation.  Chronic illnesses may each have a different prognosis - highly controllable or highly unpredictable, systemic or focused on a specific area.  But as far as I can tell, all chronic illnesses share a common fate.  We must all Adapt, Readapt, Rinse, and Repeat....or ARRR - the Pirate Prognosis!

(Stay with me, I warned you it was a corny start...)

Take the seasons for example.  Here in the US, winter is coming.  We've already had a few cold snaps, and at this point even 'seaonsal' temperatures leave me shivering me timbers (wow so I guess I'm going to milk this analogy for all it's worth).  Having Adjusted to the way my body responds to the cold, I have my new gloves for the year and am on the hunt for a replacement for my favorite but misplaced heating pad - these are things I've learned to Repeat every year.  It's not enough to guard against cold Raynaud's hands or bronchitis for one season - I have to keep doing it.

I've been through 20-some-odd winters of course, most of them with at least some major symptoms, and nearly a decade since my diagnosis.  And yet, each year I discover some new problem I have to cope with - and this year will be no exception.  I've already begun facing one new issue: this is my first winter (well, any season) on Prednisone (as well as my first where my symptoms are so progressed that I require Prednisone in the first place), and I'm finding myself surprised again.  I thought I had this figured out!  I thought I knew what I needed to do and was doing it already!  I had adjusted!  But now I have to Readjust.  Oy.

Change is part of life.  We all had to face this when we were diagnosed, or learned a friend or loved one received a name for their condition.  Certainly everyone's body will change as they age - and ours will change in ways we may not have expected.  Even the reaction we get from people around us will change...often in ways that sadden us (lost friendships, ungranted opportunities, etc), but undoubtedly also in positive ways (increased awareness, curiosity instead of condemnation, and so on).  If we can anticipate and accept these changes and the ways they will force us to respond, we can also accept that simply caring for ourselves physically will require ongoing evolution. 

Without a doubt, I'm usually not too thrilled about this fact myself.  I'm an accountant - an auditor, yet - I very much enjoy learning a pattern I can repeat year after year.  But I also see far more benefit in accepting the need to A-R-R-R and allowing it to help me move forward instead of stagnating in a mournful, stubborn stalemate.

Lastly, I'd like to take one moment to acknowledge that the Pirate Prognosis is a highly communicable condition!  That is, those without chronic conditions of their own but who live with, love, care for, or interact with us are just as vulnerable to needing to A-R-R-R with us.  My husband and I started dating in January many years ago.  He was a 17 year-old high school senior, worried more about what role he'd get in his last high school play than arthritic joints and the risk of gestational Lupus.  Within six months, he got into college, graduated high school, and found out his peppy little freshman girlfriend was diagnosed with life-long autoimmune conditions that were spiralling out of control.  Talk about an Adjustment!  That was certainly one most of us wouldn't have accepted (thank God he did, I would be no one and nowhere without him).  And of course, it wouldn't be the last time he had to A-R-R-R...added diagnoses, extended college plans, redefined "baby time lines"...not to mention his own life with redeclared majors, career changes, and so on.

I'm sure my parents didn't expect to have a child with chronic infections, nor the next with behavioral barriers.  They didn't count on childhood owies becoming adolescent ER visits or adulthood headaches.  Maybe they didn't anticipate activism either - in their children, or in themselves (for they truly were our first advocates and still don't back down) - and I hope that at least this rise to our challenges is their silver lining.

There are many groups of people I could mention, who have probably faced this Pirate Prognosis: friends (lost and lingering), coworkers, teachers...even classmates, Facebookers, and web surfers who may have found any of us.  But I think I've taken a long enough walk of this abruptly short plank (sorry, had to get one more in), and you get my point.

I think for the next awareness event we should incorporate eye patches and go around proclaiming the motto "ARRR"!!  Hm, I wonder if we could train a parrot by then...


  1. Jenny, so well put and with humor, to boot! I think it's imortant to find humor wherever we can as it helps keep us sane. Also your ARRR is appropriate for continued self care.Thank you.

  2. LOL... readapt? I'm not sure that one's in my vocabulary. I just get mad when I did what I was supposed to do and I still get screwed. This is a good one, Jen... where would I be in my journey if I didn't have your flashlight beam pointing me in the right direction?

  3. LOL Gretchen you're too funny. As I recall, you took me under your wing when I started high school, lets call it even. Besides, I don't think of myself as holding the flashlight so much as saying "hey y'all, I've come across these flashlights, anyone need one?" and tossing them out there:) But seriously, that second R is pretty important, it'll take a while I'm sure but it'll serve you well to embrace it - obnoxious as it is.


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