They’re Out There…

…the doctors who care, I mean.

My last post was done the day before I was to meet, for the first time, with a neurologist my primary care doctor recommended.  I met with her yesterday.   Up until the night before the appointment I’d have told anyone who asked that I felt surprisingly peaceful about the whole thing, even though I’d actively avoided further contact with a neurologist for about 7 or 8 years.  My primary care doctor was comfortable continuing the treatments for my neuro symptoms but every now and then would mention that he knew of a neurologist with whom he was sure I’d feel comfortable.

There came a time when I had to accept that my stubbornness was born of fear – which was born of the experiences of the past – and that continuing to let the fear make the decisions was both foolish and even made me guilty of prejudice, painting all neurologists with one brush.

I need to have a neurologist on my medical team and I needed to adjust my thinking – if the doc I saw turned out to be someone with whom I could not work, I have the power to find another doc.  It’s that simple.   If  the doc behaved as though my overall diagnosis is a religion – something to be believed in or not – then allowing that person to crush my world and stop me from seeking out the care I need would be foolish.  I could move on.  So, all this in mind, and having looked up the recommended neuro on the net and seeing good patient reviews, I felt hopeful and peaceful about my decision to go.

Until the night before when I began to get nervous about what might happen.  I imagined the visit being as it was in the past with the best of the neuros I’d seen who, even though he helped me with migraine and myoclonus, had an attitude of making fun of me so apparent that it shocked even my usually unruffleable husband.  The neuro scoffed even as we watched him make notes of abnormalities for his medical student to take down.  I stayed under that neuro’s care for some years as I did need what help he offered but I dreaded each contact.  To say more would be even less Benedictine than I’m already guilty of so I’ll let that story end here – I say that much only to contrast what a few years can change.

It’s the morning of the appointment with the “new” neurologist.  I’d planned carefully, washing my hair the day before so as not to use precious strength – we faced an hour’s drive to get there (to me, that’s like a trip to the moon.)  I couldn’t eat, I had to take two doses of Immodium to leave the house (get the idea that I was nervous?) and off we went with me clinging to positive thoughts and prayers with all my might.  In my purse was my little calendar of migraine attacks and the printout of the article in the Journal of Internal Medicine (link at right.)

My final prayer just before I was called in was the same one I prayed before I entered the courtroom for my Social Security hearing all those years ago, “It’s all in your hands, whatever you will” and with that, I let it go and in I went with my husband.

What a change from my last experience!  A young, vibrant doctor in ordinary clothes who never once made me feel I had to prove anything I said!  She asked questions, she listened to the answers without once making me feel rushed or cornered, even apologized for not making eye contact while she entered data into the computer, did a few of the usual neuro tests, and expressed views that meshed perfectly with my own attitudes!  I still can’t get over the difference!  See all those exclamation points?

At the end of this very productive visit, I asked her if she’d be willing to let me leave a copy of an article and began to get it from my purse.  Before I’d even gotten it out she said “Yes, please do, I’m always happy to read what a patient brings in.”  When I handed it to her she saw immediately that it was from the Journal of Internal Medicine and recent and she really perked up saying “Oh, this is from Internal Med; my husband is an internist and will be interested too, I haven’t caught up on my October journals yet.”

I think she’s actually going to read it and pass it on.

After I go back next week to have an EEG (they have the ability to do it right there and she’ll read it before I leave!) just to update since it’s been so long, I’ll see her every six months unless something changes.  She invited me to feel free to call in if I’m having a bad time of it, even if it’s that I need a steroid injection to break a migraine that lasts more than a day (I’ve toughed those out for a week at a time sometimes.)

I’ve got a neurologist on my team I feel good about – perhaps the passage of time and the efforts of advocacy really have brought some doctors to a higher state of acceptance about the reality of this disease.  Wow.

Deo gratias!

Peace.

 

 

 

 

 

Link to Journal of Internal Medicine Full Article

As I prepare to meet with a new (to me) neurologist tomorrow, I have found and am printing a copy of the full Journal of Internal Medicine article titled “Myalgic encephalomyelitis: International Consensus Criteria” and am listing the link below.

This is not an outline or summary, but rather the full article which appeared in the Journal.  I hope others will find it helpful.

As long as the link remains active, I will keep it listed to the side of this blog, too.  Please do let me know if you click on it and it doesn’t take you to the article.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Oh, and wish me luck – or better yet offer a prayer – that things go well tomorrow.

Peace.

Couldn’t Take It Anymore

I thought I was alone.

I wanted to be alone.

I thought.

 

Weakness, pain, exhaustion.

No escape.

Warmth at the pond.

 

Old bench,

Old friend.

Slanting light, just enough.

 

Nothing here.

Gone already?

Not winter yet.

 

Quiet, quieter, silent inside.

Sight sharpens.

Still fish, just beneath, unmoving.

 

Dragonfly on grass.

Shhhh, so still.

Baking in last of sun.

 

Something moving.

Turtle in clear water.

Swim, rest, swim, bask.

 

Weakness, pain, exhaustion.

Strength to bear.

Warmth at the pond.

 

I thought I was alone.

I was never alone.

I know.

 

Peace.

 

 

 

A Great Analogy

I came across this just now and think it’s a great way to help explain the exhaustion to others.

 

http://invisibleill.wordpress.com/2011/09/30/fatigue/

 

Peace.

Dragonfly Wings and Chronic Illness

My brain is not up to the task of putting into poetry an experience that was sublimely poetic.  So, please forgive my many words in my effort to clarify my thoughts and share something that was very meaningful to me.

In a poem I posted recently, “On the Necessity of Being Still” I mentioned the return of the red dragonflies I’d thought had not come back this year. The gift of those tiny creatures is what I write about today.

Last week, needing solitude and immersion into the natural world, I used our electric cart to visit the pond.  It was close to 5:00pm and the sun was playing hide-and-seek behind our neighbor’s trees.  The shady places having become way too mosquito friendly and the weather cool, I sought the sun and sat on a bench to just be for awhile.  The red dragonflies were all around me – a special delight since I’ve found them not only beautiful, but willing to trust and use me for a resting place if I sit in the sun and remain still.  How they make me smile!

As I sat and watched them, I saw two choose each other as mates.  I watched as they agreed to fly in tandem and began the flights that would lead to new life.  After a bit, still in tandem, they came and landed on my thigh, resting in the sun.  As might be imagined, I remained very still!  In the course of only minutes they flew off and came back for a few seconds of rest over and over.  Then something changed in a very subtle way.

Still in tandem, they came back and settled on my thigh again but this time, both of them lowered the angle of their wings until I could see, though not feel, that all eight wing tips were touching my leg.  Seconds of stillness on all our parts went by.  Then, having dared last year with a single red dragonfly (the only species that has seemed to invite this) I slowly moved a finger along my leg until it was level with their wings and dared to gently stroke the upper edges.

We sat there quite awhile, all three of us resting in the sun in trusting companionship before they took to the air and I took to my cart.  I cannot express how deeply peaceful and sublimely privileged I felt!

As I reflect again on that experience a metaphor of sorts presents itself.  I dared much in touching these astonishing creatures – but did so with what seemed to be their invitation after a trust had time to develop. I dared touch only the top edge of their wings, knowing that to touch the impossibly delicate lower edge could cause them harm.  They seemed to eagerly share part of their hidden lives; and more, invited me to spend some time within it.

I am so often so terribly ill.  Most who read these words are so often so terribly ill.  For me and for many, even our best times are times when we are simply just a little less ill than the worst times.  It is very easy to be afraid of the future, to be afraid of the derision that too many of us have encountered, to grow so much into the fear that it becomes more natural than trust.  It is very easy for the necessity of solitude to become a habit of isolation.

These creatures, so tiny compared to me, so easily harmed – trusted and by doing so gave me the gifts of peace, of companionship, of awe, of a sense of connection to the entire world.

These jewels of the natural world, by bravely sharing themselves, have illustrated for me that we all, big or small, well or ill, have been given gifts to share and no matter how small we think the gift is, the sharing matters.

Peace.

 

Not about being ill – but still about my life.

Fair warning -  this is a happy announcement of a religious nature as well as a request for prayers

I thought about labelling this as OT, or Off Topic, but since there is no separation of my life from my spiritual life – they are not two different things – that seemed inappropriate.

 

 

Last Saturday evening at the 5:30 Vespers service,  I had the blessed privilege of being received as an Oblate of St. Benedict Monastery!

(For those interested in knowing what that means, there are links to the monastery and to information about oblates to the right.)

Do I present myself now as some holy person?  Far from it (though we are all called to that.)  I am what we all are, another soul walking with God always near, stumbling often over my own shoelaces.   I am still wife, mother, grandmother, and all too often, pain-in-the-backside.

Part of the ceremony asked me to respond to the question of whether I promise to persevere in this path for the rest of my life.  My answer (the answer of my heart and of the formula of the ceremony)  ”With the help of God’s grace, I will.”

I ask for your prayers for my perseverance.

You are all part of my daily prayers!

Peace.

On the Necessity of Being Still

I write this from bed where I am recovering from one of many fierce migraine attacks this month.  I mention that because, though I will no doubt edit this many times as usual, I am more likely to miss the obvious because both the attacks and the medicine to abort them make my cognitive challenges more difficult to overcome.  So, please forgive me if this is rougher than usual.

Yet, all that said, I feel compelled today to write about something I’ve been mulling over since my last post – another lesson reinforced through a visit to the pond.  Though the necessity of stillness, rest, quiet, peacefulness, is enforced through this illness – it is far more than what might seem at a glance (sometimes even to my glance!) a physical necessity and consequence.

 

 Be Still

Quiet electric cart for legs,

I am carried to a refuge.

Sun and breeze caress painful skin.

Difficult times without and within.

 

A bench awaits but the way is hard,

Though I know it’s always worth it.

Body in pain and spirit longing,

True rest comes inside belonging.

 

I sit and look, very small inside.

Silent plea to God, teach me.

Thoughts drift, words disappear.

Vision ranges from far to near.

 

Reflections on water first blind my eye.

A breeze disturbs and clears the way.

From cold dark depths a turtle rises to drift,

No thoughts to sort, no dilemmas to sift.

 

Vision focuses even nearer to hand,

I feel my face light with joy,

Red dragonflies I’d thought never came this year,

Sit here with me, how long were they here?

 

They sit in the sun on blades of long grass,

Wings held low to absorb and soak.

Then I look closer, through the weeds,

And there I see more of my Lord’s seeds.

 

Still as a statue, one of this year’s youngsters,

Beautiful, intricate, so easily missed!

A tiny frog sits between water and land,

Hidden and patient, a jewel here at hand.

 

In the midst of suffering, a lesson,

A grace, confirmation again,

In stillness and quiet are the finest of treasures,

Each shall have what is needed, in infinite measure.

 

“Be still and know that I am God.”

Psalm 46, verse 10 (verse 11 NAB)

 

Peace.