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.

Making Room

Today I will meet with my boss, a woman I admire, respect, and genuinely care about, to surrender a perfect job I was led to, have loved, and been so perfectly suited for.  12 weeks of medical leave have come and gone, which boggles my mind a bit.  The day I came home on medical leave I thought I’d be out for a couple of weeks, they’d "fix me," and I’d be back at work and good as new before I knew it.  Today, however, I have to really let go.  I’m turning in my work iPhone, my access badge, my company credit card, cleaning out my darling office.  My company was only required to hold my position for 12 weeks and it is unfair to ask them to wait any longer.  If I knew an end was in sight, I would ask them to hold on for a little longer, that I’d be able to come back after surgery, treatment, etc.  But there’s no surgery, no treatment, and no recovery timeline.  Letting go of this is so very hard, and I know I will grieve.  Leaving behind so many genuine friends and work that made the best use of my gifts and talents. Feels so final.  So now my calendar we be open for what’s next.  And God keeps impressing on my heart that He is “making room.” 

Last week I packed up much of my former life.  I spent time going through my closet, pulling out things I don’t love, don’t make me feel like a million dollars when I wear them, don’t work with where my life is currently going or  (sadly)don’t fit anymore. I had a giant black garbage bag for Goodwill donations and a plastic storage tub for, well, the “clothes on hold.”  The tub is now filled with pencil skirts, blazers, dress trousers, blouses, sheath dresses, button up shirts, sleek pointy-toe pumps, and memories.  The things I won’t be wearing in this new phase.  Wouldn’t make much sense to dress like I’m going to a business meeting to sit on the couch and write my blog.  Or to go to the doctor.  Or on my outings to Trader Joe’s. My closet is cleaned out of the things that would remind me of where I've been and make me long for that again as I move into the next piece of my story. The plastic bin of lovely workplace fashion will wait in my garage, as I make room for something else.  

All the other radical left turns my life has taken over the past several years have always been God leading me to a defined next step, something different that was fairly clear and tangible.  This isn’t.  Which is so strange.  So I am here at this strange crossroads of limbo, unsure of what my next phase will be.  As of right now, it could just feel like empty space.  I choose not to focus, though, on my lack of a 5 year plan (or one month plan for that matter).  I will dwell in the present, ready to listen, to hear, to be still, and I will look ahead to what's next, trusting that whatever He is making room for will be for my best. I will wait on the Lord’s leading as He makes room. 

But one thing I do: Forgetting what is behind and straining toward what is ahead,  I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

-Philippians 3:13b-14

Wait for the Lord; be strong and take heart and wait for the Lord.

 -Psalm 27:4

Enough

In most of my adult life I’ve been trying to impress someone.  Someone I worked for/with, some cute boy in high school (who actually did marry me, by the way), teachers/professors, my friends, my frenemies, someone in my church, total strangers, people I didn't even like, extended family, parents, husband, children, my kids’ friends’ parents, ministry leaders. 

I always felt the driving need to prove that I am “something (you fill in the blank) enough.”  Thin enough.  Fashionable enough. Fit enough.  Smart enough.  Well-read enough.  Home decorated well enough.  Home clean enough.  Kids well behaved enough.  Working hard enough.  Doing enough at church. Doing enough in general.  Creative enough.  Cool enough.  Pretty enough.  Spiritual enough.  Innovative enough.  Involved enough. Striving, striving, striving.  So much of how I felt about myself and my success was tied to someone else’s evaluation (real or imagined) of how well I’m doing. 

Now, in this strange/purifying season in which I currently live, I find that I am not trying to impress anyone for the first time in my life.  What an odd freedom.  I feel as though I am… enough.  I can’t DO enough, but the being still that is hallmark in my life is enough in this season.  All the other standards of evaluation fall away. 

I have set aside so much of my (considerable) pride in this season, not giving a second thought to using my new handy-dandy folding cane chair (we’ve come up with several creative names for it, including Cane-ye West, Cane-y Perry, John McCane, Cane-y Poehler) when needed, or riding in an electric cart in Target on a particularly bad day, or *gasp* asking for help.  Not worried about how anyone else sees me or judges me.  Again, so much freedom. 

Do I know what the next steps will look like?  Nope.  But I have found a place of freedom and contentment in spite of that.  I am enough because what God is doing in me is enough.  Sitting with my husband at breakfast, chatting and sharing coffee is enough.  Quiet times with my young adult kids just being there (something that is short-lived, I am painfully aware) is enough.  Sweet time with a precious friend is enough.  My slow pace is enough.  

Being in God’s presence, not running, not striving, is enough.  

Blessed

The past three days have been hard.  Very hard.  Feeling particularly bad since last Thursday and disappointed/frustrated in my lack of improvement.  Not my favorite.  But last night one of my dearest friends and closest confidantes in the wide world, one who sees me, knows me, and knows my struggle, challenged me to write something every day about how I am blessed or what I was thankful for. Not easy today, but a much needed paradigm shift.  So here it goes.  One blessing for each of these very difficult three days and one extra for tomorrow:

1. I am beyond thankful for my husband of 25 years who stands with me and supports me through the hardest things.  He listens to my pain, sits with me when I cry, and loves me regardless.  He helps me wherever he can and encourages me when there are things only I can do.  I honestly don’t know how I would keep going without him. 
2. Air conditioning.  It’s July in the Sacramento Valley.  Enough said.
3. 3Exactly-the-right-level-of-ripe nectarines from a roadside fruit stand, just a few miles and a few hours removed from the trees that grew them.  Golden perfect reminder of teen summers spent working at a nectarine ranch fruit stand.
4.  People from all phases of my life, near and far, who have reached out to me to encourage me in this part of my journey, share their own stories, and give me solutions/thoughts that worked for them.  It means the world that you would take the time to communicate and let me know you hear me, you see my challenges, and you care. 

The point in all of this is that God is good and faithful no matter what is hard in my world.  To quote my friend Susie, even on bad days, “There’s a lot of good.”

^“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” 

2 Corinthians 4:8-9

Can't

My growing list of “can’ts” is disconcerting. 

• ·       Can’t focus on more than one thing at once.  Can’t walk all the way through Ikea.  Or Target. Or the mall.  Or even Trader Joe’s.  
• ·       Can’t go to a theme park for the day. 
• ·       Can’t hike. Or sight-see.  Or even snorkel.
• ·       Can’t remember what I meant to do/who I meant to call/ what I meant to tell someone.
• ·       Can’t garden/do housework/move around much for more than 15 minutes before I need a nice long rest. 
• ·       Can’t drive very far without feeling awful. 
• ·       Can’t work at the job I love.
• ·       Can’t stand for more than a minute or two (don’t know why, but it’s harder than walking).   
• ·       Can’t remember words sometimes, heartbreaking for this girl, one who loves language. 

Oh-so-easy to focus on those things, those “can’ts” that weigh down like the lead weights I feel like I’m carrying every time I move, the fatigue that pushes down on me like hyper-exaggerated gravity. 

Again, in my time with Him (a great blessing that is part of this season of challenges), God realigns my thinking and reminds me of all the “cans” I should be holding onto. 

• ·       I can be present here and now with my family and have those “simple” conversations with them that wouldn’t happen if I was in my “normal” life. 
• ·       I can learn, as the apostle Paul, to be content in all circumstances.
• ·       I can, again like Paul, do all things through Jesus’ strength. 
• ·       I can trust that He knows the plans He has for me, plans to prosper me and not to harm me, plans for a hope and a future.  Words spoken by the prophet Jeremiah to a people in captivity that ring true to this grounded sparrow’s heart today.  He knows. 

And so you have it; I have my list of “can’ts” and my list of “cans.”  Where I focus my time and energy is up to me, my choice.  So I choose to hold on to Him, the One who is more than able to do immeasurably more than I can ask or imagine.  He can. Even when I can’t.