LEMON-AIDE

Hi readers and fellow bloggers.  I’ve missed you.  Our son’s wedding was last week and being able to just focus on a thing or two at a time (good ole CFS affected brain), I set my online life aside for a couple weeks.

In being away, I missed this urgent, time sensitive request by the CFIDS Association of America.  The CDC’S five year CFS research and advocacy plan falls far far short of what is needed.  Each electronic email letter sent (It only takes a moment) adds power to our voice and hope that the CDC will change the proposal to match our needs.  CDC is accepting our input officially through tomorrow.

We have been waiting too long, to be taken seriously, to have research adequately funded, to have the medical and public community understand this serious Neuro-Endocrine-Immunological disease that alters and devastates lives.  We have waited too long for the stigma of a disease so non-chalantly named and quickly judged, to be lifted.  We have waited too long for medical care, for a diagnostic test, for treatment, for hope….

Please take just a moment and send this electronic letter to the CDC.   Click here.  The numbers they receive count!

I look forward to posting soon…so much has been happening…much to share.  Also, look forward to catching up on blogs.   Wishing you a feel as good as you possibly can day,   Kerry

What a whole lot of fun… Tonight I was able to attend a celebration for a treasure of a friend who is moving out of state.  This has been a week of barely being able to stay awake or move, so tonight being awake and mobile, let alone being able to be a part of a fun party in honor of our friend, was an unexpectedly awesome.

As my friend and I said good-bye tonight, she reminded me that I don’t have to worry about “being out of it” with her…that she doesn’t care…that’s she’s seen me pretty sick and it doesn’t scare her.  She told me that when she flys back for our sons wedding (in two weeks) that she can hang with me when I need a break because I’m “feeling out of it”.

Why is it that it so often takes good-byes and endings to slap us with the beauty that has been right under our noses?  In hindsight I would have trusted her with my vulnerability, talking to her on the phone more often… even if my weak tongue muscles were causing me to slur my words or if my brain was blipping out (struggling to find words and short term memories).  I would have invited her to watch a movie with me and curl up on our sofa, even if all I could do was lay in the recliner as we watched a movie together.

It is hard for me to trust that I won’t frighten people in my health challenged condition. I tend to isolate myself when my symptoms are severe, partially due to the loss of some friends and family members uncomfortable with my physical and cognitive difficulties and sometimes the emotional overload that can accompany them.

To risk trusting and experiencing the possibility of losing another loved one makes my stomach tumble.  Risking takes both opening up vulnerability and at the same time owning a security that if the worst should happen and a loss result, it will hurt, but it will be okay.  If the best happens and a relationship grows stronger, with the further acceptance and appreciation of each other’s human condition, how cool. 

So tonight, after a light hearted, reminiscent party, spent over a vat of chocolate fondue, I have learned from my friend…that life is too short to be afraid of those afraid of my illness.  In my being afraid, there’s a good chance I will miss precious gems who love me… illness and all…and who I can love just as they are. 

Chronic illness tags along, wherever we go, whether we want it to or not.  Tonight I tried to ditch mine in order to go out to a “last day of school”, yearly tradition, dinner with my family.  What a dumb “ditch my CI” idea I tired.  I’m paying for it now as it’s two thirty am and I’m wide awake.  My heart is beating too fast and my stomach lining feels like it’s been bathed in acid.  Since I am awake now, I will most likely be extra sleepy tomorrow.

This has been a week of constantly changing Barometric Pressure, which my brain is unable to adapt to normally. One of the symptoms this causes is similar to narcolepsy. I fall asleep in the early afternoon, wake up mostly paralyzed and struggle to talk. After a couple hours I gain some movement, but cannot shake the sleep-like state and fall easily back to sleep again.

Today was my daughter’s last day of school. I fell asleep early this afternoon and once again could not wake up.  I wanted to go out and celebrate, I wanted to feel awake so badly, that I asked my daughter to buy me an iced espresso with two shots.  I managed to be more awake then I have been in many days. I do not often drink heavily caffeinated drinks. “Coffee” for me in the morning means warmed soy milk with just enough coffee added to taste. I do not drink soda, yet I had two tall glasses of diet pepsi with my meal. After the double espresso, and soda, I felt more wakeful than I have in days. I was able to stay awake and enjoy my daughter, her boyfriend and my hubby, a fun dinner at a tavern, a delicious burger, and live music.  Was it worth it?  Yes for the fun, no for the physical fall out.  There is no ditching chronic illness, it finds away to tag along anyway.

I can only laugh at the timing of these narcoleptic like states brought on by this week’s crazy weather. Our son (our oldest kiddo) is getting married in just two weeks.  My husband and I are hosting the wedding. Much of our family will be visiting from out of state. How am I preparing?…by sleeping more than half of each day away!

And you know what? I don’t have a choice…unless I take on another barrage of caffeine–NOT!  So, I have to surrender, let go, let be, accept that what will get done will be enough. I have to accept that I will not be able to have clean carpets or grime free kitchen cabinets. I won’t be able to stick my hands into making sure the decorations, the cupcakes, the rehearsal BBQ are all up to my expectations. Instead, I need to turn my sleepy thoughts towards love (the essential ingredient to a wedding) emerging through all the imperfection…even if all that I imagine can go wrong, does.

Chronic illness takes no time off for weddings, births, vacations, funerals etc…It is possible that after my son and daughter-in-law say their vows and I make my way to the reception hall, that my brain will put me to sleep, right there and then in the midst of our guests. 

I am ever humbled and continuously learning that I have such little control over life. That all I can do is remember to breathe, and when I am able to be truly awake…that I be just that… awake…taking in each moment, each color, sound, taste, feeling…and most of all the presence of those I love.

So, my online friends, I am awake at the moment and wanted to shout out a hello. Here’s to celebrating when we are able to participate in events we long to and to accepting as peacefully as possible when we can’t.  Here’s to being realistic too…I know that if I fall asleep and miss our son’s wedding reception, my peaceful acceptance will arrive only after I’ve kicked at it, offered it a tirade of ticked off words and had good sob!

There’s no ditching chronic illness, yet I dream of a “chronic illness babsitter”.  I would shake out of my illness much like I would a dress, set it in a playpen or the like and leave it on the sitters care for a few hours. (I know my husband and kids would second that!) 

Why is it so hard to admit to crying?  Good chance its because in our culture “crying” is associated with “wimpiness”. 

Okay, wimp or not, here goes…I just had a good cry.  It was not a loud cry, nor a sobbing cry, but a quiet cry.  I let the tears flow…let them leave red trails over my cheeks and make the bottom of my nose plump with rosey patches.  (I sure hope my doorbell doesn’t ring!)

But, I feel better.  I feel calmer.  I feel a sense of surrender as if I set my boxing gloves down and stopped punching at the what is that I don’t want to be. 

Sometimes the profound exhaustion of ME/CFS in the face of life’s demands can leave us feeling like a toddler come evening who skipped his nap that day…overwhelmed and brought to tears by exhaustion itself.

In my current peaceful state of post crying, I am wondering…”Why do I feel so much better?”

I decided to do a bit of googling and came across a good article about the physiological benefits of crying.  Yes, the physiological benefits!  Crying it turns out, is good for us.

If you have a moment to give the article a read, I guarentee it will take the self-judgment of “wimp” out of crying.  The next time you shed a tear or two, or a whole bucket…know you just did something good for your health.

The Sun Co. UK- lots of scientific info. on the benefits of crying

Here’s to being human!  (…or to being an elephant, yes, they cry emotional tears too!)

How we need these bodies of ours no matter what state they are in.  This morning I’m feeling extra body bound, as if gravity had a surge of energy and is pulling extra hard on my physicality. I was grumping around, longing for my awareness of body to fade into the background.  I started sorting through my files when I found this poem by Joyce Sutphen.  I love how sometimes we can find just the words we need to read at just the right time.  Here’s to accepting our own unique bods…healthy or ill, in pain or comfort, energized or exhausted, fit or flabby, young and smooth or old and wrinkled…

LIVING IN THE BODY

By, Joyce Sutphen

Body is something you need in order to stay

On this planet and you only get one.

And no matter which one you get, it will not

Be satisfactory. It will not be beautiful

Enough, it will not be fast enough, it will

Pull you down into a sleepy swamp and

Demand apples and coffee and chocolate cake.

Body is a thing you have to carry

From one day into the next. Always the

Same eyebrows over the same eyes in the same

Skin when you look in the mirror, and the

Same creaky knee when you get up from the

Floor and the same wrist under the watchband.

The changes you can make are small and

Costly—better to leave it as it is.

Body is a thing that you have to leave

Eventually.  You know that because you have

Seen others do it, others who were once like you,

Living inside their pile of bones and

Flesh, smiling at you, loving you,

Leaning in the doorway, talking to you

For hours and then one day they

Are gone.  No forwarding address.

When someone invites me for an outing, I feel like I imagine a dog feels when it’s owner grabs the leash for a walk or takes him along for a ride in the car. You know that look on a dog‘s face when he has his head out the window and his ears are flapping in the wind? He looks like he’s in a state of bliss. I think I understand how he feels.

Early this afternoon my hubby (who works from home) took a break and came downstairs.  He looked at me sitting on the couch where I’ve been parked for most of the week, and declared,” We’ve got to get you out of here”.

If I had a tail it would have been wagging.  I put some lipstick on my neglected face, slipped on my tennies and grabbed a bottle of water.  We set out in the car for a nearby park with a path that takes us to the river.  On the way there, just a few minutes from our house, we noticed what looked like a new road pointing directly towards the river.  We followed it and sure enough it ended right at the water… so close you could almost drive straight into it…and not even five minutes from our house.  Love that.

We set out on the walking path that wanders with the water, our eyes soaking in the new found scenery.  How green everything is this time of year, the grass, the leaves, even the river water.

I can take a walk along the river because not only do I have an awesome partner to get me there, but I have a cool walker.  It has a seat and a basket that holds my water bottle.  It rolls real even and keeps me steady.  So we walked and I rolled.  We were so engrossed in watching the high river water, the beaver blemished trees, that we went a bit further than I should be walking.

We turned around, and that’s when the raindrops started to fall.  Big, plump, cool (but not cold), raindrops.  They soaked into our hair, our clothes and rolled down the panes of our glasses.  If I coulda danced I woulda.

I’m back on our cozy couch now, hair damp, but feeling warm and content. (Hmmm…bet this is how a dog feels after a “ears flapping in the wind” ride).

Today holds another chance to make a difference in the lives of those with ME/CFS.  It is the CFIDS Association of America’s Virtual Lobby Day.  In just a minute or two you can send an email to leaders in Washington to educate them about the seriousness of this disease and urge them to commit more to research.  Click here to write a short message that will be sent straight to the President, Vice President, and Congress.

Here’s to CFS Awareness month when together, by doing whatever each of us are able, we can make a difference.

“Once you choose hope, anything’s possible.” ~Christopher Reeve

I became disabled by ME/CFS at 29. At that time I had taken a few years off from my chosen and much enjoyed career as an elementary school teacher to be a full time mom to my three little one’s (under the age of six).  I was never able to return to teaching. My husband became a single parent outside of home and often inside on my sickest days. My little one’s grew up with much love, but having to take on a responsibility beyond their years…helping to care for an ill parent.

Now, I am in my forties.  My illness has progressed with the greatest damage to my neurological and cardiovascular systems. I have lost permanent function, coordination and strength. I am not able to stand up for longer than minutes at time due to drops in blood pressure. I need to use a walker outside of my home and am mostly homebound. 

Though many ME/CFS patients are as ill as AIDS and Cancer patients in the last stage of the diseases, most can not find a doctor who knows enough about this illness to treat it. Imagine waking up one day feeling like you have been hit by a truck. ..you can hardly move from weakness and exhaustion…your body is battered by severe pain, your cognition has slowed. You go to the doctor because you want to feel well again.  You need to go to work, to care for your children, to do the tasks the living requires.

The doctor takes a blood test, it comes back normal; he tells you that you are fine, or perhaps are just under too much stress.  You go back home as sick as when you entered the doctors office.  You keep hoping the illness will resolve on its own.  When it doesn’t you continue searching for help.  You go to another doctor who performs another test (usually to rule out Lupus, or MS…which ME/CFS symptoms can mimic). The tests come back negative and again you are sent away.  How you miss your old healthy self.  How your family needs you to be your old healthy self.  So you keep on trying…a neurologist, a cardiologist etc…

Years pass, you become progressively more ill, losing more and more function and independence.  Occasionally a new doctor will think of another test to try, which most likely also comes back negative…and yet the damage to your body continues. This is the common journey of those of us with ME/CFS as we navigate the medical world.

Imagine as well, being the spouse, child or parent of someone with ME/CFS.  Not only do you bare the responsibility of physically caring for your loved one, but you watch the suffering and feel helpless as there are so few resources to turn to for help.

Then there are the spouses and family members who do not stay, who leave under the pressure. Many ME/CFSers suffer alone, without support (physical or financial).  Many become homeless. Sadly, too many become hopeless as they are engulfed in debilitating pain, increasing loss of function (and independence), without medical care. The rate of suicide for people with this disease is twice the national average.

ME/CFS is given just a token of government money for medical research.  Research is the means to finding the cause, the diagnostic tests, the treatment and someday the cure.

You can help those of us whose lives are affected by this illness, by supporting research, supporting those you know who suffer from this disease and just by learning about ME/CFS. You can visit Blue Ribbon Campaign for ME/CFS Awareness for a synopsis of facts about ME/CFS and ways you can help grow awareness.

If you are able and feel inclined…even the smallest of donations towards research can make a big difference. You can visit the CFIDS Association of America (dedicated to CFS) if you would like to make a donation.  Specify that you want your money to go to research.

Thank you for taking the time to read this post.  By doing so, by caring enough, you have already built awareness and hope,   Kerry

 When the world says, “Give up,”
Hope whispers, “Try it one more time.”
~Author Unknown

My physical condition presents as a big ole messy knot of symptoms, both diagnosed and yet to be.  There are few doctors who aren’t scared off by those of us with multiple conditions and/or systemic symptoms that are wound together tight, that overlap each other, some fitting into one diagnosis others meeting the criteria of another.  Precious and rare are the doctors with the patience and the courage to attack the knot and begin loosening the strands into their separateness and essence.

This has been a week of feeling like an especially enormous, yucky, strands sticking out in all directions, knot of yarn. I traveled far to my chronic illness specialist (one of those precious and few above mentioned doctors) and met with her NP.  The appointment included a brainstorm of what to do next to find the cause of my left side’s loss of coordination and function and how to find a neurologist who can take on the official diagnosis, treatment and care of my probable Myasthenia Gravis. I have found the decision making flummoxing and exhausting.

What problem do I face first?  Do I travel west for exploration of my cervical stenosis/myelopathy as the culprit for left side damage or do I travel east to the big teaching hospital for further testing and treatment of Myasthenia Gravis. Would a visit to another local neurologist be worthwhile?

Each step is financially and physically overwhelming.  Even more so are the emotions born of too many previous let downs… too many tests yielding too few answers and doctors without time for, or faith in, solving such a puzzle.  A new doctor triggers worries that they too will not see “me” but instead will see a hopelessly messy, unconquerable knot, who they will send on its way without answers or help.

This week I have felt knotted up with both choices and feelings…twenty years of being ill and searching for help can sometimes drain one’s spirit.  Is it worth it, to push on?  Is it worth the time, the physical toll, the financial hardship?

I know what my answers to these questions will be once I‘ve marched through this sledge of feelings.  I will answer “yes”, because I don’t want my body to lose more function, because I want to get the best treatment I can and live as fully as possible.  I will say “yes” because,

“There’s no such thing as giving up!”

Our youngest daughter created these words, our family motto, when she was five. We have lived by them, survived by them and even thrived by them. Her words are etched in my heart and mind.

And, darn it, it is simply moral and humane, that those who are medical knots, (medical mysteries), be treated, cared for as all living beings should… and not given up on.

Dance You
by, Kerry Ryan-Kuhn

Dance you, whether you’re a waltz or a hip-hop

a salsa, a ballet,

or a simple subtle sway

Don’t waste a beat wondering if your dancing good

if she’s dancing better

if he’s dancing worse

Don’t waste a step worrying if someone’s watching

if someone’s judging

if someone’s laughing

Dance, as if there’s only one you

as if there’s only one turn

to dance yourself…across the Earth

While laying in a tube, diameter just larger than a human body, with sounds similar to a jackhammer rattling my brain, I fall like Alice in Wonderland, down a “rabbit hole” and land in an unexpected, but peaceful place.

I discovered this rabbit hole during my first MRI and am thankful I did every two or three years when I again find myself encased like a poster in a cardboard tube.  Just after I am slid into this tube, claustrophobic gases seem to fill the space around me and soon enter my nostrils, my mouth my lungs, I want to squeeze the “help” ball which is in my right hand to communicate,

 ”GET ME OUT OF HERE!”

Just before I squeeze it, I breathe the imaginary claustrophobic gas in and find myself in my own peaceful, soulful MRI world.

Some might call where my mind settles meditation, others prayer; for me it’s a bit of both. I float. I think of the people I love. I visit my favorite places…always stop by Stanley Lake…where my soul consistently wanders when needing to be soothed.

I hear the jolting MRI machine sounds morph into a symphony played by a heavy metal orchestra (if there was such a thing). I do not like heavy metal music, but from my magical MRI world, I do; and so I float on the music that is no longer obnoxious noise.

This is how I get through the hour and a quarter I spend in the tube. Last night when the technician said “One more image to go. It’s a short one, just four minutes and we’re finished”, I popped up through my rabbit hole as excited as can be that it was over. After they got me out of that skinny pipe and helped me to my feet, I realized that I felt like peaceful dust (non-allergenic) was still floating around me.

I dread MRIs, but, I am surprised every time to find that rabbit hole to peace in that claustrophobic, obnoxiously noisy, narrow, tube..

Those of you who have had closed MRIs, how do you make it through without squeezing “THE GET ME OUT OF HERE!” ball?

*Mom, thanks for sending me your prayers at exactly six o’clock. They arrived and I think they seeped into the MRI machine with me. Oh yes, I can’t forget to thank you for not lighting a candle so I wouldn’t smell (envision) the smoke from states away and start a coughing fit in the middle of the tube–wink!

Envision this, there’s a middle age woman (me) with CFS and exercise intolerance that accompanies it. She tries hard to get in any movement she can–it is hard to keep one’s weight down and body healthy and fit when you can’t aerobically exercise (she’s a bit vain, which is an understatement).

So, she steps on her treadmill whenever she can, setting it to ultimate SLOW and walks at a turtle pace. She’s worked herself up to ten minutes these past couple weeks without flaring herself up and she’s feeling pretty good about it.

One night this week, just before going to bed , she decides to get some more movement in.  She’s exhausted, but her husband’s in the room. She knows if her legs stop while she’s on the treadmill, her husband can help her from treadmill to bed. If she was alone she wouldn’t do it…

Sure enough about eight minutes into her walk, her legs slow down to near stopping.  She’s having a hard time making them keep up even with the slowest setting on the treadmill.  Her arms are too weak to raise to the “turn off” button. She calls to her hubby, “Babe, I’ve gotta stop. Can you help me off of here”.

He comes running knowing that when her muscles stop, they stop quick…which means his having to drag or carry her weight to bed…grueling! He sees the button which slides to the right to turn the treadmill on or speed it up. The button is so far to the left, set so slow, that it confuses him…

He slides the button quickly to the right, kicking the treadmill into full speed. The vain, exercise intolerant, wife goes flying off the end of the treadmill. The hubby who is not exercise intolerant and in excellent physical conditional reaches for her as she shouts “Are you _____trying to kill me!” (Blank not a word I use unless in a sudden dangerous situation which is out of my control).

Mid-way between treadmill and floor, nimble hubby grabs her and saves her from the fall.  And, that’s why I choose to do stupid things, like walk on the treadmill when my body can’t hack it, only when my hubby is around!

Made for a good healthy laugh for both of us…but wouldn’t recommend trying this at home–(smiley face-if I had access to icons).