November 27, 2010

The Diseased Chicken or the Anxious Egg?

I've just joined a brand spanking new Ning group: Una Vita Bella - A Beautiful Life, created by Amy Kiel.  Amy is a health activist for many issues, but her new group is focused on chronic pain sufferers and also the mental health issues we often face.  (I suggest checking it out, it's very new so there's a lot of room to help develop it into what you might see missing in other communities on the web.)

In her welcome, Amy points out that many people with chronic pain also live with mental health issues.  Sometimes the connection is (at least to us) obvious and logical - who wouldn't develop depression if every day included pain, and if yours is one of the many conditions without adequate treatment (and forget cures), well, I'd worry if you didn't get depressed.  Not to mention, that depression (accute or ongoing) isn't the only issue - anxiety, anger issues, and so much more comes with the territory, and some medications we take exacerbate things further.  Oy!

But, at least for some of us, can we definitively say that our pain or condition CAUSED our mental health problems?  I've started reading a book, "Why Zebras Don't Get Ulcers" (see it on Amazon here).  It discusses a theory I've heard before but hadn't explored: our bodies weren't made to withstand chronic stress.  When we subject ourselves to ongoing mental stress, our bodies have to manifest it somehow.  I think it's likely we all agree that mental and emotional stress has very real physical manifestations (I just blogged about my own stress-flare on WEGO), so this sounds quite logical to me.  The beginning of the book uses the zebra as an example contrary to humans: the zebra experiences intense stress - such as an attacking lion - and reacts immediately with the ever-popular fight-or-flight response, including plenty of adrenaline and specific muscular and synaptic processes.  Once it's gotten away, the stress is over, and the body can return to homeostasis.  Humans however, have the advanced mental capability to think abstractly, which means we can imagine "what-if"; we can ponder the future.  We can imagine the lion coming over the horizon while I'm at this watering hole...and therefore, we can worry. 

Physiologically speaking, this ability to worry causes a similar reaction to the immediate stress of a zebra fleeing from a lion...except it never ends.  We all know the old gags about stressed businessmen chugging antacids for their ulcers...but there's some scientific support for this connection.  And moreover, someone once pointed out to me that we now have so many treatments for ulcers (or perhaps our bodies just adjusted to this stress manifestation), that the stress-illness has to go somewhere else...and where more logical than a system in our bodies?  One that relates to sensory transmission?  Yeah, that's right, the same systems that convey pain.  (I suspect Miss Julia may have some technical information on this that I could never understand on my own - I'll have to check her back entries soon to see if she's touched this topic yet.)

So this brings me to my real question: which came first, my illness or my anxiety?  I was actually diagnosed with anxiety when I was in first grade (yes, I mean really diagnosed, not just people saying I was anxious).  I wasn't diagnosed with my chronic conditions until I was 15.  But then again, I had clearly related symptoms back to age 2...but on the other hand my conditions didn't really "bloom" until I was 14 (when the sun triggered my conditions).  And yet, I was diagnosed with anxiety at about age 7...but my mom has stories from my infancy about how anxious I was (even one about the nurse in the delivery room commenting on my "worried worried face").  So, was I anxiety-ridden or disease-ridden first?  Can I identify when exactly each my anxiety or my health conditions truly started so as to determine which came first?  If I wasn't so anxious, might my other conditions never have flared?  I didn't develop such serious conditions, would I have "outgrown" my anxiety?  And moreover...are all my questions only serving to increase my stress and ultimately perpetuate the cycle???

Of course, there's other background involved in the whole whole life has just been a big pile of stress - severe family disharmony, financial problems, my brother's Asperger's and its effect on my life, my parents' health problems, and so on.  So goodness knows I would have been stressed even without my own medical mess.  And there's a LOT of support for familial links for both the medical and emotional/mental health problems.  So I don't suggest dismissing these factors or placing all blame on one factor...but I think it bears discussing. 

So I pose the questions to anyone open to this discussion...did you have any mental health concerns before your medical issues appeared?  To what extent?  Do you have any additional information missing from my post?  And most interesting to me - what long-term effects do you think stress can have on humans?

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...