Wednesday, July 31, 2019

Fibromyalgia Forced Me to Look Inward

Fibromyalgia has given me a gift.  It has pushed me to reflect, evolve, and break up a solid foundation of untruths I've lived by.  Trauma happens to all of us, at least that is what I'm finding as I share my story.  We all have things we need to work through.  Some do it sooner than others.

Childhood Trauma is being found to be linked to the development of Fibromyalgia. “'I think what we’re starting to appreciate is that when you have traumatic experiences as a young person, it rewires you. And the way in which you interpret physical symptoms is changed forever,' said Steve Passik, PhD, a psychologist and Vice President of Research and Advocacy for  MillenniumHealth." 

One way I have always gone through life is by playing the "mother figure".  From a very young age, I remember peers and elders saying things like "Katie is the mom of this group" and "you're an old soul".  I remember being 10 years old, my mom cemented to the couch again.  I didn't know why.  Six years later, she would be committed to Kalamazoo Psychiatric Hospital (and spend the rest of her life in the State's care) for Schizophrenia and Bipolar disorder.  

Cultivating a Caretaker Persona

When she was on the couch for days on end, I would "cook" meals, do the dishes, rub her feet and scratch her back.  My younger sister and I would stay out of her sight as much as possible.  When she was manic, it was a crapshoot.  She could be a lot of fun, bringing us to get ice cream or buying us things we liked.  However, she could also be violent.  Not so much physically to us, although there was some of that, what she'd do a lot screaming and breaking of things.  It was scary.  

As an elementary student, I'd befriend those I saw as outsiders.  I'd see it my role to help them.  In 5th grade, one of my friends was Joey.  He had six or so siblings.  He'd come to school dirty and wearing raggedy clothes and shoes with holes.  I made sure to protect him at recess (bullies saw his petite frame as easy pickings) and brought from home anything I thought he could use.  My home life was not much above his financially, but my mom did obtain decent clothes (generally garage sales and donations) for my sister and me, so I felt I could help him, too.

This mother-figure that made sure to take care of those around me continued into college, my marriage and family, and into my profession as a teacher (both to my students and colleagues). 

I've begun to realize that this role has served me.  Yes, I did it to help others, but I also received what I wanted.  Maybe it was a distraction from dealing with my own wounds, helping someone with theirs. Maybe it was to get the love and appreciation from the one I helped.  Maybe it was to get the praises of those around me.  Maybe it was to be needed.  Probably, it was all of these.  Still, it led to me ignoring my own needs- physically and emotionally. I would regularly get through a day of teaching, realizing that I had not had anything to eat or drink all day.

Learning I'd Been Living a Lie

This realization comes through writing.  Often my hand flows without me knowing what's going to come out.  It's as if an invisible spirit has taken my fingers over and I sit and watch as the words fly out.  Often what I write is very close to the first draft's version.  When I read it, I come to understand a new insight about myself.  There was little to no forethought about what gushed out. Many times I cry as I read it to myself-the knowing becomes so raw. 

Below is a poem that brought me an understanding of one of the falsehoods I had lived by.  

Sitting by the Fire on a Starry Night

By Katie Clark

I am looking for the light.  What sparks? What ignites?  
Too long have I hidden in the dark; fanning your fire.
I too need to burn; burn bright and strong.
I too need to know that who I am counts.
That just me, not what I’ve done for you,
Actually has meaning and worth.
It’s not your fault.  I wanted with all my heart to give you my-
But now, I will sit here, staring up at the stars calling out from the blackness.  Striking my flint against the steel of my thigh. 
My sparks fly out onto the carefully cultivated tinder. 
The sparks glimmer and glow orange, going out before I can give it breath. 
I strike again, showers of promise shine down on the awaiting fodder. 
I don’t hesitate.
I blow gently, timidly at first, hoping that my fire will burn strong and vibrant.  
You come and sit next to me,
reminding me of all the oxygen I gave to you to hold. 
You pass it back to me.
I blow with a giddiness that encircles those embers and brings it to flame. 
“I will get you sticks,” you say. 
I’ve only brought logs, and they’re not ready to ignite.  
Your offering brings my fire alight and bright. 
“Now,” you nudge, “add your first log. I think it’s strong enough.”

It Was Complicated

The relationship I had with my mom was complicated at best.  I was so angry, disgusted, and ashamed with her nearly all my life.  Yet, I respected her, loved her deeply, and thought she was amazing.  After her suicide in May 1991 when I was 27 years old, 5 months after my son was born, I went through many stages of emotion: anger, judgment, love, inconsolable grief, forgiveness, and shame.  This poem poured out of me after listening to a speaker talk of forgiveness.  

By Katie Clark

You defied them.
They said you were mentally ill.
You said you had hypoglycemia-
drinking raw eggs like Rocky.
They put you in a hospital.
Outwitting your opponent
with your 120 IQ.
They put you in a home 
and told you not to smoke.
You went to your best friend’s house
and bummed a carton of cigarettes.
They let you get your own studio apartment.
You said, screw this,
I don’t live because you say.
So you, let  the blood run out
Soaking into the shag carpet.

A Desperate Obsession

About three months after my diagnosis with Fibromyalgia, I began to massage myself, relentlessly.  The more I massaged, the more I needed to and more places that seemed to need it.  My massaging was not gentle.  I would poke and press as hard as I could take directly onto an aching muscle: calves, thighs, feet, thumbs, neck, chest, shoulders, upper arms, lower arms, armpits...This began to happen when I was reading, sitting as a passenger as my husband drove, when I was out for drinks with friends, while I was teaching....It began to be an obsession.  Again, after some reading about Complex Trauma (childhood exposure to multiple traumatic events—often of an invasive, interpersonal nature—and the wide-ranging, long-term effects of this exposure), I sat down to write and this came out.  

Kneading Need
By Katie Clark

Sitting across from him, I watch his question mark gaze
follow my own fingers kneading my arm like bread dough.
Deep within the fibers of my body is an aching-
the famished maw of need.
In the shower, I see purple and brown
finger painted bruises on my calves,
thighs, forearms...chest from
kneading the angry gnawing
with no respite.
From foot to skull, silent shouts seep.
Bone to muscle to flesh-
exposing the desperate deprivation,
demanding to be satisfied.
How funny it is coming to love her-
pain and all.
To understand that she is just asking
for what she has needed all along.

Fibromyalgia has forced me to look inward.  I'm grateful in many ways.  I am coming to know myself.  I plan to live FULLY as myself from this time on.  

What have you learned about yourself as you deal with chronic illness or issues life has brought you? What benefits have you reaped as you wade through these obstacles?

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  
However, as you know, my new normal means that sometimes 
I have to listen to my body and am not able to follow through 
as planned. 
Thank you for your understanding.

Wednesday, July 24, 2019

Down The Rabbit Hole: Could Medical Marijuana Help?

I took this photo of 
Alice In Wonderland's Tea Party at
Fredrick Meijer Gardens and Sculpture Park.

When I was 12 years old, the summer before I started 7th grade at Harrison Park Junior High in Grand Rapids, my mom gave me two books to read: Go Ask Alice by Anonymous and That Was Then, This is Now by SE Hinton.  Both were life-impacting books for me.  At that tender age, I vowed to myself that I would never get into drugs.

As an adult, I do not like ever not being in control of myself.  I also hate a foggy, unclear brain.  So, I never really got into drinking or drugs.  I won't say that I don't know what it is to be out of my head; my husband and I tried mushrooms one time when we were camping. His roommate had sold him some.  Mushrooms are from nature, right?  Well, while that is a very interesting story I have told very few people; it's not one we ever visited again.  I also know what a hangover is like.  I'm definitely a light-weight and after my three maximum drinks in an evening, I will be laid low for the entire next day if I have more, so I don't do that.

As I've stated in prior blogs, I was VERY opposed to taking Cymbalta, one of the three approved FDA pharmaceuticals for Fibromyalgia.  I finally gave in when I was so beside myself with pain, brain fog, and no strength or energy this past December.  From there, I was on it for 4 months (30mg), 2 months (60mg), 1 month (30mg) and then I stopped- cold.  This was a bad move.  I should have actually taken the 30mg every other day for a month, etc. to taper down. Lesson learned. 

I'm now two weeks into Cymbalta withdrawal and still feeling badly (mostly from withdrawal side-effects). However, the pain is there.  Currently, the left side of my body from foot to left eyeball is aching so much I'm nauseous.  When I wake up, my arms and legs feel as though their connective tissue has turned into wood.  It's slow going and painful to get them functioning for the day.

More Than I Can Handle

This weekend, feeling beyond what I could handle with my breathing, stretching, aerobic, and meditation strategies, I began to research medical marijuana (MM) in the state of Michigan.  I had a response from a reader of my blog Feeling Like #$%&*! replied that he was able to ditch Cymbalta (and other like-pharmaceuticals) by using marijuana transdermal patches.  I did bring this up to my pain doctor, but I could tell he wasn't willing to look into it after his comment that "there's not enough research".  However, after doing some of my own, I decided to get a Michigan Medical Marijuana Card to use if I couldn't handle things fully on my own after the withdrawal passed.  

This is a convincing video that has 
helped me open to the idea of MM.

To get a Medical Marijuana Card in Michigan, I had to locate a doctor who would recommend the card for me based on my diagnosis.  I found Healthy Partners and made an appointment without an issue.  I had my medical records with Fibromyalgia Diagnosis faxed to their office.  The DO I met with just verified my diagnosis and marked "chronic pain" for the reason, being Fibromyalgia isn't listed by name for the accepted reasons for the card.  (See list provided on Healthy Partners FAQ page.)  I then applied for the card online at LARA: Department of Licensing and Regulatory Affairs.  This was about a 20-minute job once I had the paperwork from the doctor. The only other worker at the office was very informative, and I quickly found out that getting the card would be the least of my concerns.  

Need to Become Your Own Expert

Being the MM Card is a recommendation from a doctor and not a prescription, the patient is the one who needs to know what he/she wants and needs.  A quality resource that explains things fairly well is Although, for someone who is totally new to using marijuana, it will take some trial and error.  My plan would be to go into it very timidly.

I want pain relief, clarity of thinking, and living my life productively.  This isn't what one stereotypically thinks of when referring to marijuana.  Turns out there are two types: Indica and Sativa. (Below a brief description from Part 1, Sativa vs Indica: An Overview of Cannabis Types.  They also list a Hybrid of the two types.
  • Indica strains are believed to be physically sedating, perfect for relaxing with a movie or as a nightcap before bed. 
  • Sativa strains tend to provide more invigorating, uplifting cerebral effects that pair well with physical activity, social gatherings, and creative projects.
Next, the consumer needs to consider the strain. allows one to research based on desired effects for your treatment. I do not want side-effects that produce the  "high", munchies, tiredness, or paranoia. So, using the Advance Filter, I am able to look up specifics.  Also, I researched what other consumers and doctors are saying about MM and Fibro. 

My go-to blogger on for solid information on Fibromyalgia is  Her article was just what I wanted: Fed Up With Fatigue: Best Strains for FibromyalgiaShe's written several on the topic, and I've come to trust her factual presentation. 

Finding a Provider

Next, I have to find a provider.  (MRA-Licensed Michigan Medical Marijuana FacilitiesI want a licensed (monitored) facility that I can rely on to have a pure, quality product.  Also, I don't want to smoke (or have the marijuana smell).  I'd prefer to find transdermal patches, but this looks like it might be difficult to find. The difficult part, after finding what sounds like the best fit strain and delivery system, is finding a place in Michigan that I can buy that product.  I can already see that I'm going to have to call and visit a few places.  The strains I'm most interested in: Harlequin (High CBD and lower THC)  for day time and then, Tahoe OG Kush for nighttime insomnia. The problem I'm encountering is that MI facilities don't have these specific strains in the exact delivery system I would like.  So, actual calling and visiting will be needed. 

Why I'm Considering MM

There are several reasons why I like using MM versus Cymbalta and like-drug. The main reason is that I can decide the dose.  I don't think I'll have an everyday need (we'll see).  I'm following the program that I got from my 10 weeks in Mary Free Bed's Fibromyalgia Program.  I'm continuing to grow in being present and meditation.  With Cymbalta (although the side-effects aren't major for me, they do impact my quality of life), it's an all or nothing commitment.  I have learned the hard way that stopping its use every day is very difficult for my body from which to rid itself. I also don't like feeling trapped by it.  

So, being I haven't yet tried MM, I can't say if it's going to work or not.  However, I'm finding good evidence to say it's worth a shot (and way less invasive than the prescribed pharmaceuticals).  I will keep you informed on what I find out and what happens if I choose to use it.

*If you are not in Michigan, I would imagine that the path you take would be similar.  However, Michigan has recently joined the states that have approved marijuana for recreational use.  

There are many resources to give you insight into the use of medical marijuana: 

What are your thoughts of using THC? There isn't a lot of research on it's effects for chronic pain/Fibromyalgia, what there are is promising. Possibly more research will be coming since it's becoming legalized in many states.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  
However, as you know, my new normal means that sometimes 
I have to listen to my body and am not able to follow through 
as planned. 
Thank you for your understanding.

Sunday, July 14, 2019

Whatever Makes You Hopeful and Lightens Your Heart Just a Little...

This is one important part of my yoga space
My long-time friend, Mindy, sent me this card a while back.  I framed it because I think it's beautiful and fits in with my candle and vase.  The saying in the circle is "Whatever makes you hopeful and lightens your heart just a little..."  After finally feeling well enough to get up, take a shower, and attempt yoga at home, this was a great reminder for this day and every day.

Today, I did a slow Yin yoga (a routine that popped up yesterday in my Facebook feed) from Yoga Journal.  I added in a few other poses and used my yogi blankets, bolster, and Coregeous ball liberally.

I did each of the poses to the station I've made on Pandora: My Yoga
With Deva Primal

with Krishna Das

with Eva Cassidy

with Carla Bruni

After an hour of practice, it has made me hopeful and has lightened my heart.  I'm ready to face the day.

*My Cymbalta withdrawal symptoms are lessened this morning. Not FULLy myself, yet, but I feel myself immerging. 

What are some of the things that bring you joy and lighten your burden?

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  
However, as you know, my new normal means that sometimes 
I have to listen to my body and am not able to follow through 
as planned. 
Thank you for your understanding.

Saturday, July 13, 2019

Feeling Like #$@&%*!

Believe me, I feel like SHIT!

For those of you who know me, I don't swear....much.  In fact, it's only been in the last few years that I even swear at all.  This has been the base of much teasing for me.

As a teen, as my volleyball teammates would use the full out "S" word or "D" word after missing a serve, I would really strongly say things like "bananas!"  My partner teacher for 16 years, feels proud that she has encouraged and trained me to open up to the use of the vulgar vernacular now and then when there are no other words that really capture the sentiment.
So, I am going to just say it; I feel like SHIT!  I have not felt this bad since I had viral meningitis (I'm not as bad as that time in the emergency room, but man, it's reminding me of it). Since the purpose of this blog is for me to record my true journey (for healing through the writing and remembering where I've been) and to possibly help others who are dealing with Fibromyalgia, I've decided to write this (as I can today because doing anything and nothing are both really difficult right now).

An Overconfident and Rash Decision

Last Monday, I spent the night at my daughter's house.  It's a treat to have a "girls night" and then hang out at her house the next day.  However, I realized Tuesday morning that I had forgotten to bring/take my Cymbalta pill that I've been on since December 7th, 2019 for a total of six months.  (As explained in my post Leave No Stone Unturned, I had gone from 30mg to 60mg back to 30mg.)

On the 18th of this month, I went for my pain medication checkup.  My doctor and I had planned on taking me fully off Cymbalta at that time.  At my last, pain psychologist appointment, my doctor said that I'd probably go to zero from 30mg since it's the lowest dose anyhow. (I've since learned that that's not quite true. 15 mg is the lowest commercial dose available.) Then, she said they'd want me to give it a month or two to see how I'm doing without it.  My thinking was that by going off Cymbalta I could then see how I am doing without the brain-altering drugs and from there, see if I would be able to manage the fibro symptoms without it.

So, this past Tuesday, I thought, Why not just stop now?  Then, when I go on the 18th, I can let my doctors know-how I'm doing. I was feeling fully confident that I'd be doing pretty well because the 10-week Chronic Pain Program had taught me a lot of ways to manage the pain.

A Reminder That I'm Not Fully In Control

Thursday night, after a wonderful day of hiking and photography with my daughter and 13 teens in the woods, I was beyond worn out.  I wasn't sure I could drive myself home.  I felt weak, dizzy, and a bit nauseous.  I could feel a headache coming on. I scolded myself for leaving my water bottle in the car rather than have it on the seven-hour trip, figuring that dehydration was the culprit. (I did eat many grapes and had some applesauce, so I wasn't crazy dehydrated.) By the time I got home, I couldn't bring myself to drink water or eat anything.  I did take some Bayer Back and Body with some water, though and was in bed by 6pm.  As the evening wore on, I got worse.  I couldn't even listen to soothing music or my book without being bothered.  Finally, I did fall asleep and felt relatively okay the next morning.
These are withdrawal side-effects from Cymbalta.
I have every one of these (except the brain-zaps).

Yesterday, feeling the edge of what I had the night before, I canceled my appointment in the morning and then had to sit out on the kayak trip I had been looking forward to with the Outdoor Adventure group of women called the Wander Women with whom I had just recently begun to connect (see my blog post Sleep, Fog, and Vampires).  However, by afternoon, I could go swimming and felt pretty good doing it.  I swam and worked on the beach from 1-5pm.  Still feeling good, I went up for a shower because Kel and I had tickets to see the Mark Lavengood Band: Bluegrass Bonanza at The Dogwood: Center for Performing Arts because I will be writing an article for our local NewaygoCountyExploring online magazine

I Want Off This Ride!

The first set, I was totally into the music and even would have liked to dance.  During intermission, I went and interviewed Mark (very talented musician from Grand Rapids).  But, when I sat down and the first song of the second set started, I felt a wave of ill-ease wash over me.  I knew it was the start of what I had the night before.

Last night wasn't good-fitful sleep and up by 4am. But this morning, man oh man!  I feel like I've just gotten off the Whirl-A-Twirl ride that also included a Sock-O-Matic machine in the car that I was riding in. And this morning, it's ramping up rather than going away.

One of my major fears for even starting a med like Cymbalta were all the stories of withdrawal symptoms.  One friend had told me about her mom's experience after taking it for two years.  The withdrawal ended up being so bad (horrible brain shocks, etc) that she gave up and went back on it.

Not So Cocky Now, Am I?

So, today, my decision is to push on.  I sure do hope these warnings I have read in online articles about the side effects from Cymbalta withdrawal can take weeks or even months to get back to my "normal" self are not correct.  I do have Cymbalta pills I could take, but I'm five days without and just don't want to start over.  I'm currently sitting on the deck, in the shade, wet cool rag on my head.  The light breeze and lake view are helping me feel some better.

My husband, son, and four-year-old grand-daughter are taking care of me like an invalid.  I sure hope I'm up to going swimming this afternoon.  Tomorrow, we have family coming over for lake fun.  Monday or Tuesday, I'm hanging out with someone I only ever get to see every few years (she's in Michigan visiting from Arizona). I haven't been able to go to my yoga class since Wednesday. This is F#$@ed-up! (While I use that word verbally now and then, I still don't feel comfortable writing it out.)

My VOW: I am going to do every OTHER thing rather than EVER be on meds like this again!

Article on Easing Cymbalta Withdrawal Symptoms:

Have you ever been on any of the three FDA-approved Fibromyalgia prescription medications?  What has been your experience?

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  
However, as you know, my new normal means that sometimes 
I have to listen to my body and am not able to follow through 
as planned. 
Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Tuesday, July 9, 2019

Following My Heart...Tentatively

My husband, Kelley,  and my cousin 
enjoying the river, the lazy way.

I haven't written for the past five days (in this blog at least).  However, it's been on my mind.  Mostly because there are times that I am feeling defeated and times when I'm so very optimistic that it feels like I'm not telling a coherent story.

So, this 4th of July, Kelley (my husband) and I went to rustic camp at my cousin's forested land on the Chippewa River in Shepard, MI. We set up what we lovingly call our "luxury tent".  Actually, Kelley did most of the setup.  By the time we got to the river at 1:00pm, I was really tired out. The day before, I was whining about setting up our two-roomed, canvas tent.  "It takes too long and it's too heavy."  This is not my normal camping attitude, but I'm finding I want the light-weight easy setup tents.  I'm game for roughing it but want to make it as easy as possible.
It really is a great tent, just heavy!
After a couple of great days (however sweltering) hanging out with my cousins, I could tell I was beginning to feel the effects of not stretching like normal, eating and drinking celebration fare, as well as the stifling heat (subdued by swims in the river and dinner at restaurants).  After dinner at a wonderful Italian restaurant in Mt. Pleasant, MI, I knew I had to go lay down.  Our double high blow-up mattress was low on air, so I uncomfortably laid there for a couple of hours.  The pain began to throb, louder and louder in my shoulders, arms, and neck.  I began to feel nauseous.  I dragged myself up (Kelley and the others were a good two city blocks away, near the river) to sit in the running car with the airconditioning, hoping that this would help.  It didn't.  That's when I resorted to texting Kelley, asking him to come back to help me.

He got me my go-to pain med: two Bayer Back and Body and water.  I cried as he caressed my head and back, helping me to calm down.  I worked on breathing, slowly in for 4 counts and out 4 counts.  Kelley suggested that he drive me home and come back to get our things the next morning.  That sounded like good option, but I just didn't want to give in.  I want to go backpacking for Christ's sake!  If I went back, I felt that I would be giving up on that.  So, by calming down, the pain subsided a bit, and with the air mattress at back at full support, I went back to bed and slept all night.  The next day was cooler, and I was back to my normal level of manageable pain. 

Kelley got a $500 gift card to Amazon
 from Delta Airlines due to agreeing to
 changes in his recent work travel.
So, I  bought these items for 
an upcoming backpack trip-
to be named at a later time:)
So, Kel and I are planning a backpacking trip for next summer. However, we're probably going to do it locally and for one night, possibly two, to see how it goes.  I'm going to do what I love.  I just may have to be a little tentative. 

Do you have things that you love to do that are pushing your capabilities?  Do you have goals that you're striving for?  Are you able to find ways to do the things you love with modifications? I'd love to hear ways you're finding to live your life FULLY doing the things you love.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  
However, as you know, my new normal means that sometimes 
I have to listen to my body and am not able to follow through 
as planned. 
Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email