Wednesday, November 23, 2016

The End of an Era - Changing Doctors

I went to my doctor today, for what will be the last time.  After fighting with different insurance companies for the previous couple years, I finally found myself with no insurance options that would cover my specific doctor.  After checking all my options I ultimately resigned myself to striking out to find a new PCP.

While this may seem insignificant to a lot of people, changing doctors for a "spoonie" is a big deal.  It can take a lot of effort and expense to find a doctor who will take fibromyalgia seriously and have the patience to help you manage it on an individual level for the long run.

I find myself reflecting back on the intense stages of life that my doctor has seen me through, and I can only walk away from the past 4 years thanking God for putting her in my life at exactly the right moment to help me cope and gently walk me through some of the roughest days of my life thus far.  

Each time that I previously thought I would have to give up my doctor, I went through an emotional roller coaster of fear and anxiety, feeling hopeless.  This time, I simply accepted it.  It was time.  As I saw her this afternoon to get a medication refilled and to check in, I was able to thank her for the truly compassionate care I've received from her and the staff.  I broke the news that I would no longer be able to keep coming to their clinic.  In response to my news, she broke her own revelation--that she would be moving on as well to a different clinic.  I thanked her for her help and wished her all the best.

All I can say is--thank you, God, for keeping her there as long as I needed her, and giving me grace for the changes to come.  It's no exaggeration to admit that leaving her office today felt more emotional than leaving my college campus after graduation.  Normal people probably aren't typically that close with their doctors, but when so much of your life is impacted by what happens at the doctor's office, and you find the first person in a white coat who offers a listening ear and believes you when you share your symptoms and struggles--that relationship is not lightly replaced, and I am confident it won't be.  But I have hope that I am now better equipped to be my own advocate in the medical world, and I am ready to face building a new relationship with a new doctor.

Those of you who spend enough time with your doctor to reach first-name basis know the significance of this transition.  For those of you who don't, I genuinely hope you never find out.

Saturday, October 22, 2016

Fibromyalgia and Tattoos

I don't know if this is a common issue, but it's come up enough in recent months that it seems worth posting about.  If you have personal experience in this area, I'd welcome comments and feedback, here or on the facebook page Walking Through Fog.
    You may have guessed by this point, but the "issue" I'm referring to is getting a tattoo while dealing with chronic pain.  If you are a "spoonie" and have considered getting a tattoo, it's possible you've faced the same self-doubts and/or others asking some version of the question, "Why would you put yourself through that kind of pain voluntarily when you are already dealing with pain you can't control on a regular basis?"  I know after I started physically recovering from my miscarriage last November, these are thoughts that dominated my perspective.  How much would it hurt?  Would it make my pain from Fibromyalgia worse?  Would it make it harder to get my doctor to take my pain seriously?  Would it create confusion and contention with friends or family who already seem skeptical about my "condition"? 
    I can tell you from personal experience that these and many other questions rattled around my mind as I thought constantly about whether or not to get some kind of memorial tattoo for the child we'd lost.  Yet, in spite of all my fears and concerns about the ramifications of this decision, I still kept coming back to the intense desire to mark the life-altering event with a visible "battle scar" to show the tremendous struggle I'd come through.  Eventually, through discussions with my husband and some close friends, I came to the conclusion that the risks were worth it.

Getting My First Tattoo

So, on August 5, 2016, I entered a local tattoo parlor (that I'd previously scouted out) and sat for an hour while a friendly professional tattoo artist applied his considerable skill to creating exactly the design I'd brought in.
    The pain levels (which I'd tirelessly Googled and compared previously) were surprisingly minimal, and with some moderately distracting conversation, I was surprised when he announced the tattoo was complete.
    Having heard stories of people being in such pain that they passed out, or had to break up their ink into separate sessions, I was ready to stretch my limits just to get through.  It turned out to be relatively easy compared with my daily experience of chronic pain and fatigue.
    Coming out of this experience has left me with a few questions.  Why was it so important for me to get this tattoo?  Why was it such a "non-event" on the pain scale when compared with Fibromyalgia symptoms?  I've come to a few observations that I think help explain these reactions.

Why is it so significant? 

My tattoo in memory of our miscarried child "Kai"
One thing that this experience has shown me is that there is something inherently powerful about having long-held invisible pain made visible to those around you.  As someone who struggles with pain that is largely invisible to the rest of the world, it is refreshingly therapeutic to express visibly how your pain has shaped and mingled with your identity.
    For those who aren't facing chronic pain, the best comparison I can reach is the mainstream experience of getting a "memorial tattoo" which is generally to remember a loved one who has passed.  The loss of a close friend or family member becomes part of your journey and shapes how you move forward for the rest of your life.
    This was the case for my tattoo.  God did a lot of work in me through this process, and sadly in our culture miscarriage has largely become as invisible a grief as the chronic pain of Fibromyalgia or Rheumatoid Arthritis.  In giving expression to the tragedy of losing an unborn child, I found strength to incorporate that experience into the rest of my life.
    In addition to giving voice to the invisible struggle, I believe that there is a possible explanation for the pain of a tattoo not even comparing with the chronic pain of autoimmune diseases.  While our culture stereotypes chronically ill people as weak and sickly (not able to cope with even normal stimulii), it simultaneously portrays getting a tattoo as an incredibly tough, painful experience.  Reality has taught me this could be backwards.  
    Living everyday with pain that will not subside is a tough, painful experience.  On the other hand, getting a tattoo in a relatively common area (excluding the obviously very painful ones) like an arm or a leg is not necessarily that painful.  It can be, depending on your personal pain tolerance and the artist's skill level, but it is not the torturous process that mainstream America has decided to portray it in pop culture.

Why does this matter?

So, why am I bothering to overthink all this?  I think this can be significant for a few reasons.  First, it reminds me that facing chronic pain does not make me a weak person.  Getting a tattoo was a very empowering experience, and it left me feeling that at least this time, fibro didn't win.  Being sick does not mean I have to stop living my life.  
    Second, it forces me to face culture's expectations for me as someone who struggles with chronic health issues.  I do not use a wheel chair or oxygen.  I don't have a noticeable limp.  If you just saw me on the street, I would look fine.  By doing this, I get to define what my condition looks like.  I get to look good without feeling guilty, or feeling like a poser.  I am sick, and I don't look "sick."  I know, it's crazy, right?
    Third, it gives me a greater compassion for people who make decisions I don't understand.  There are millions of people around the world who are dealing with situations and decisions I haven't had to face.  Just as not everyone will approve of getting a tattoo, I won't be able to relate to other people's decisions.  That's okay.  I am willing to give them space to grieve and process in their own way.  I don't have to make the same decision to be able to appreciate the person making it.

While some people may shake their heads at seeing my tattoo, without knowing the story, and assume I'm just one of those millennials who hopped on the ink bandwagon, I know the significance of my decision.  I am perfectly content to live the rest of my life with this particular battle scar visible on my arm.

Any other spoonies out there with tattoo stories and experiences you'd care to share?  I'd love to hear your stories.

Monday, June 6, 2016

The Value of Relationship

I've talked a lot in this blog about the way relationships shift or die out from complications relating to our chronic conditions, but in this post I'd like to discuss the flip-side of that issue.  I'd like to tackle how cultivating deep relationships can actually prove to be a healing aspect on your journey through pain and illness. -ktg-

Pain is a difficult challenge on the best of days, but what many healthy people don't realize is often the most crippling thing about chronic pain is the utter isolation it creates.  When other people your age are off making friends, growing in their chosen career, starting families, and living their lives, you are managing doctor appointments, counting prescriptions to see if you have enough to last to the end of the month, and trying to decide how many spoons you're willing to spend on taking a shower for the day.

This makes meaningful relationships difficult, but they are no less important.  If anything, the extreme strain put on relationships from health problems actually highlights the fact that we are created as social beings.  We are not designed to live by ourselves without a social support structure in place.  We are meant to live in community and share our lives with others as they do with us.

This requires purpose and intentional choices.  Deep, meaningful relationships will not just naturally develop for most people.  You do not suddenly wake up one day and magically find lifelong friends popping up in your yard with the dandelions.  Maintaining and sustaining relationships of this magnitude requires emotional investment, physical presence, gut-wrenching empathy, and in most cases a whole lot of time.  Just because you've known someone's name and address for twenty years does not mean you know them.  Just because you see someone everyday does not make you good friends.  Years of small talk is really just...a whole lot of small talk at the end of the day.  I don't know about you, but I don't feel especially close to people I can only discuss the weather with.  

A difficult reality I am coming to these days is that true friendship is deciding whose struggles you're willing to take part in.  Whose burden are you willing to take a piece of?  Whose hopes and dreams are you willing to listen to for the fiftieth time?  Whose sadness are you willing to weep over?  Whose life do you want to care about?  Whose children do you love like your own?  Who will you spend time getting to know, even if it's hard?  

This is relationship.  This is what truly creates family.  This is what makes those nights of sitting awake at 3am wishing for the comfort of sleep bearable.  This is what makes you continue to sort out the pills when it would be easier to just give up.  This is what makes the "good pain days" worth waiting for.  This is what makes us human.

Tuesday, March 29, 2016

A Psalm for Brain Fog

I was reading through a favorite Psalm recently that has long been a source of comfort and encouragement in rougher periods of my life.  This time, however, something new caught my attention, and it seemed worth sharing with the rest of the Spoonie community since I know we can always use some more encouragement. :)

I am talking about Psalm 131.  I'll include the text below in the ESV so you can see what I'm talking about.

Psalm 131 (ESV)
O LORD, my heart is not lifted up;
my eyes are not raised too high;
I do not occupy myself with things
too great and too marvelous for me.
But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.

O Israel, hope in the LORD
from this time forth and forevermore.

So, I realize there's a lot there, and I don't really want to take the time to get into the reference to Israel and whether or not the church is "today's Israel."  I would like to simply focus on the similarities being expressed by David and the struggles the chronically ill community faces.

He begins by being honest about his emotions and where he is at.  He is obviously struggling and discouraged by something.  Whatever his struggle is has overwhelmed him, and he is convinced that it is too much for him to handle.  Sound familiar, spoonies?  He is known as one of the Old Testament figures who danced and sang before the Lord in public, but this is obviously not one of those times.  He is deeply troubled, and even as a king and leader of his people there is nothing he can do to make it go away.  I read those words, and no amount of history can keep me from literally feeling that type of struggle.  David knows pain well, and I am not alone in my struggle.  

Moving forward, he talks about not spending his time trying to figure out things that are just too difficult for him to understand.  While you could take this many ways, in the context of his psalm and for our purposes, I think it's fair to say there is correspondence to brain fog.  He may not have struggled with a chronic disease, but all of us who are can readily relate to feeling that there are things (sometimes everyday details) that are too hard for our brain to process that moment.  It really is ok to just set them aside.  Why?  Because like a nursing child who has been satisfied with his mother's milk, all of our stresses and tensions do not rely on us to come up with a solution for them.  

As believers (especially as the walking wounded of chronic conditions) we can rest heavily on the welcoming arms of Jesus who never gets brain fog, never runs out of energy, and never tells us to just "suck it up" or "walk it off."  We can be confident and at rest within our souls, even when our bodies refuse to be rested.  

O Spoonies, hope in the LORD from this time forth and forevermore.