Managed Healthcare: My Love/Hate Relationship

Warning: Semi-rant ahead.

One of the things I really desired as I walked and blogged my way through this whole experience is to be authentic and to share what I'm learning, the good, the bad, and the ugly.  So today I'm adding a bit to that transparency journey and sharing some of the practical rather than emotional parts of my walk.  A bit of the ugly. 

I have been blessed with good health most of my adult life and have not had to deal with navigating the labyrinthine chaos that is the medical referral system until now.  I am grateful that we have good insurance, which, overall, has served us well.  However, give them something that is slightly outside the box and they don't know what to do. 

Just to update any of you who haven't heard the latest:  symptoms and test results (lack of positives) have all led to a diagnosis of what has been called chronic fatigue syndrome in the past, but is more accurately known now as Systemic Exertion Intolerance Disease (SEID). See graphic and link below for further info.

Here begins my rant:  It frustrates me that I am more knowledgeable (JUST based on internet research) about my condition than my experienced and educated primary care physician, who "can't do anything else for me."  It frustrates me that no one specialty claims/treats/works with SEID.  Diagnosis and "treatment" are often shunted over to Rheumatology, since SEID bears some similarities to fibromyalgia, which is treated under that umbrella.   It frustrates me further that my the rheumatology department of my medical group won't take a referral concerning SEID. The referral department told me that if I come up with a doctor I want to see, just let them know and they'll give me the referral, but they don't know what direction to point me.  The two SEID specialists in the area that I've been able to track down on my own are outside my medical group and won't accept me since they aren't part of my group.  Seriously?  Am I the only person in the greater Sacramento region within our medical group (one of the "big ones" in the area) who has had this disease?  They've never come up against this before?  It frustrates me a GREAT DEAL that there is no advocacy within our medical group for this condition (if I'm wrong about this, please let me know) and that the one with the illness is now responsible for trying to run down a doctor who will listen. 

And yes, we are considering/working on changing medical groups at this point.  Thankfully our insurance will allow that, however, we aren't guaranteed that the grass will be any greener on the other side of the managed care fence.

I know others who have dealt with this whole pantheon of medical frustration and I salute them.  I further know this is just another step in my journey.

I am reading up on my condition and am learning to work toward being the healthiest version of myself I can given my condition.

I am blessed to have people in my life who are offering alternative solutions.  I recently overhauled my eating habits (Whole30/paleo) at the encouragement of one of my dearest friends who was changing her own eating habits.  I was gifted by my sweet cousin with a box of essential oils that I am trying as treatment for my symptoms, and have already seen some progress with pain management. 

I am doing some yoga (short duration is all I can do) and taking vitamin supplements.

I am, most importantly, using the time I have with my drastically altered lifestyle to enjoy and appreciate my family and friends and reconnect with many of the things that are most important to me: time with God, creativity, reading, writing, occasional craftiness, and stillness.

For further info about CFS/SEID, check out this article (you have to scroll down a bit, past all the links):

http://www.medicinenet.com/chronic_fatigue_syndrome/article.htm

Planner

That’s what I am.  A planner.  I like to lay things out, set my goals, make a plan, execute, and succeed.  This is how I roll.  I’ve been like this my whole life.  I am a girl who is giddy at the sight of a new day planner or calendar at the beginning of a new year.  A blank canvas, waiting to be filled.  This is not to say I can’t roll with the punches, get creative, and adjust with circumstances, those left turns that life throws at me.  Not at all, I can TOTALLY do that.  But I always have an end result I’m shooting for and a sense of control over the process and (sometimes) outcome.  Or so I thought. 

In my years of teaching, this was the time of year to lay out a year-long plan, a glorious frenzy, setting up classrooms, getting my world organized, laying out plans for my next newly improved unit/technique/ideas (many fueled by my awesome department head/friend/partner in crime Ric Reyes).  I was buying supplies, making my surroundings adorable AND efficient.  I was so enthralled with my empty lesson planning book, nothing but potential for creativity there!  When I was in my glory as an executive assistant, I was always planning for something the office/my boss/the region needed, working on the next steps, the next seasons, planning the next meetings and events.  Loved the whole process and the satisfaction of seeing my carefully laid and executed plans come to fruition.

I walked through Target with my soon-to-be-a-high-school-senior daughter today as she bought school supplies.  Out of the blue I totally choked up.  (Strange how Target is mentioned so often in my blog.  I should get a royalty.)  Not choked up (like any rational mother)  because I was getting school supplies for my youngest child for the last time in high school, but because it hit me full force that I wasn’t planning anything myself.  Nothing.  How oddly out of character and unexpectedly disconcerting.  It threw into sharp relief how drastically my world has changed since April, when I was a woman with a plan whose plans were suddenly turned upside down.  I saw the beautiful classroom supplies I would not need to set up.  The adorable office supplies with no office to go to.  The cute day planners (I DO still use a paper planner, one of the few of my kind) I would not need to fill.  I am without a plan.  And I, like so many with chronic conditions, am learning/struggling to deal with this. 

No plan.  From the perspective of one who has walked through some insanely busy seasons of life, this sounds glorious.  And it can be.  And it was.  For a week or two.  Then I realized this lack-of-plan season wasn’t going to be short-lived.  And I started to feel a bit adrift.  I’m now in this strange state of limbo; it sometimes feels like I am without a purpose.  After all, I can’t DO very much at all these days.  I’m not sure at all what to plan for.  Or if I can actually plan for anything concrete.

No amount of planning, or much of anything I do, can control how I will feel when I wake up.  If I overdo one day, yes I do reap those consequences the next day (or two, or three), however the inverse is not always true.  I can spend a day on the couch “being good” and resting for an event/errand/plan in the future and STILL feel like I was hit by a Mack truck the next day. 

One of my dear friends, whose sweet daughter has a chronic condition that limits their activities, gave me great words of wisdom:  “We don’t make plans, Kathleen. We have ideas.  And sometimes they work out.” 

I am learning more and more that even when I HAD a plan, that didn’t/doesn’t mean I have control.  And I have far less control now.  Not easy for the planner in me.  I was very tempted to buy a label maker during this morning’s retail festivities to start labeling storage areas in my house, file folders, anything that would stay still long enough to be labeled!  But I actually laughed out loud at myself and put said label maker back on the shelf.  I recognized that was truly just another bid for controlling SOMETHING in my life. 

No part of where I am with my health and uncertain future was part of my plan.  But who among us REALLY knows what the future will hold?  Who REALLY has control of their circumstances?  We all have ideas, but they don't always work out.  I was reminded of this passage as I was thinking about this today: 

Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.  Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.” 

James 4:13-15

Setting aside my plans.  I’m getting better at that.  Learning to live in the present with a looser hold on what the future will look like isn’t a simple thing for a planner like me.  But it is making me more open and more vigilant to see His will, what is needed, where I’m being led, and what plans really don’t matter very much. 

This scripture, while often quoted, rings truer than ever to me in this season:

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

He’s got the planning covered.  

"But you look great!"

Ah, that phrase.  Meant by those who say it to complement.  And taken that way, generally.  But it is a hallmark of an “invisible” illness.  I have heard it many times in recent months.  I look perfectly normal, if a bit tired, my general appearance not revealing how I feel or what’s going on under the surface with my health and well-being.  My demeanor, unless you know me and observe me for a while, would not show that I am in pain or dealing with debilitating fatigue that drastically limits my activities.  I’ve had strangers give me a second, quizzical look when using my seat/cane (now called “Sit-izen Cane” for those who were wondering) in the middle of Target.  The question in their eyes: “She looks fine, why is she using that?”  No scars, no injury, no hair loss or major medical paraphernalia.  Looking great. Hair and makeup done, dressed cute, even somewhat accessorized.  However, what doesn't show is that it took me most of the morning to get that way and this is my one outing of the day.  

I have talked about this recently with several friends who have similar experiences.  My dear friend and prayer partner for the past 11 years has MS and recently had the worst flare-up of her adult life (back under control, thank God).  So many have told her “But you look great!” throughout the years, not understanding why she couldn’t always do what it seemed she should be able to do based on her physical appearance and age.  Another dear friend’s beautiful pre-teen daughter struggles with a chronic disease that limits her activities in ways you can’t imagine.  But she looks great.  Two other life-long friends, now precious online-far-away-friends, have dealt with the same phrase, the same situation, the same feelings, because of their ongoing “invisible” health issues.  But they look great. 

Sometimes it’s hard to hear “that phrase.”  Those words can carry (though not intentionally) into the heart of the hearer a question about the validity of their experience and condition.  Can make the hearer feel as if they aren’t really...understood.  Not fully seen.

A couple of weeks ago, as I was pondering this phrase after spending time with some friends who hadn’t seen me for a few months, another thought came crashing in on me.  That difficult-to-hear, kindly-meant phrase is true for all of us, not necessarily in the realm of physical health, but in our hearts, our minds, our souls.  Those around me who “look great” may be carrying burdens I can’t fathom or imagine.  Those who seem from the outside to have it all together may suffer from incredible pain they never show.  Behind their smiles can be a heaviness, a weight in their hearts they’ve dealt with their whole lives that is beyond my experience or understanding.  We are so accustomed to stopping at the surface, just glossing over the outward appearance of a situation or a person and making a judgment from that, not taking the time to look deeper.  Like a thunderbolt, the question: Just as I crave compassion, grace, and understanding for my physical condition as I am learning to navigate all of this, shouldn’t I extend the same compassion, grace, and understanding to all of those around me?  Shouldn’t my experience make me more sensitive to the fact that appearances can hide such pain and struggle? 

All of this is NOT to say I don’t want people to tell me I look great (who doesn’t need to hear that??).  And it’s NOT to say that I wish to be defined by my health condition, because I really don’t. 

What I DO want is this:

I pray for God’s eyes to truly see people's hearts, past the “great looking” surface in all of those around me, and to discern the need for my kindness and grace.   I pray for a softened and understanding heart, so I can know where people’s experiences that so differ from mine are affecting them, and therefore extend compassion where they need it most.