Today I was outside for awhile.....I wanted to bring in a rose or two to put in a pretty vase... to cheer up my space.  The summer storm has passed, but the humidity in Georgia is so thick everyone gets a free spa facial courtesy of Mother Nature.

As I snipped I felt a tiny stab of pain in my finger......I caught a thorn.  Seemed so unfair, sometimes its the little things that set off the unfairness of life stream in my head. 

I'm in the midst of a CFS/Fibro flare....I have to have labs done on Tuesday in order to get my thyroid meds renewed.  Then I go to the orthopedist for an EMG test.  Since June 3rd I've had x-rays, an upper cervical mri, a lower lumbar mri and now this EMG, a test where the victim (patient) actually pays for a doctor to give them electrical bursts of pain.  The pain reaction and location allows the good doc to figure out how to best proceed.  If it's not terrible....I'll be having a lower lumbar epidural done on Friday morning.  If the diagnoses means a new direction is needed then we'll discuss it and do the upper cervical lumbar instead.  The second epidural if seen as the best course will happen two weeks after the first one. They also want to send me to another orthopedic clinic to turn off some of the more severe pain sensors which they say can last up to 12 months.  It's been hard, but it's all in the works.  I hope to have less pain coming soon.  They told me that there is severe arthritis in the neck, shoulders and the pain runs into the upper arm muscles, there is pain and stiffness in the elbows and wrists.  There is numbness & tingling both upper and lower, the pain in my left leg HURTS so bad that I can't stay on my feet long, can't get my mind off it while sitting or l ying down.  It's so present every day.  I need a break, I need help. 

Can't tolerate much of anything by way of pain meds, can't take nsaids due to being on a blood thinner following blood clots in my left leg and both lungs.  ......But I'm still here to fight another day.......I'm actually smiling because I've learned over the years about a kind of strength that I never knew I had .....a river of quiet power & grit that flows through me --- helps me face the challenges, helps me pace & rest & when I must -- how to lean in to the illness -- remain still & silent. 

That is only part of my health journey.......I also have Sjogrens's Syndrome, high blood pressure, acid reflux, severe obstructive sleep apnea and there's more.  I won some kind of disease lottery.  I've known days when I was so exhausted I couldn't move....not even a few inches to pull a blanket over my shivering body.  I've sat so still at desks, tables and was unable to rise........trying to will my body to do things I'd done thousands upon thousands of times before.  The exhaustion, the fatigue so severe that I couldn't simply rise and walk.  Found myself in a shower unable to shampoo my hair.......dreading getting back out, drying off.....making it back into my bed. I've sat in front of a grocery store trying to figure out how to stand up after lifting each leg out of the car......all the while wondering how I would find the energy to drive home, make dinner, help the kids with their homework.......go to work the next day.  This is not normal fatigue, it is an abnormal kind of exhaustion I wouldn't wish on my worst enemy.  I've fallen more times than I can count.  I've spent months that turned into years in bed.  I've crawled up stairs......I've lain on the floor too tired & too ill to find a way back to my feet.  I've been sick a long long time.......23 years. 

Turning 40 didn't work out well for me.  My second marriage disintegrated with my illness.......he hadn't signed up for so much reality.  It was hard.......change & diagnoses after change after diagnoses.  The pill bottles seemed to multiply like guppies. I couldn't take in so many illnesses, so many symptoms.......the very first doc told me it was all about STRESS.  Hmmm, see I felt in my gut that it was physically based, a real tangible illness.  He made me doubt myself .....after all people were always telling me that I don't LOOK sick.  Do I think illness takes a toll on the spirit?  Absolutely, did I shed some tears that day in front of him...yes I did.  The tears thing is where a lot of docs make a rapid leap from listening to grabbing their script pad.....if there are tears then it's not always physical to them.  Many medical practitioners stop seeing you as a patient they can help.  They often stop before they often even bother to start. 

Trust your gut.....off I go thinking & writing & wonder what was my point?  As I snipped that rose and felt that tiny thorn I stopped in my tracks, I couldn't see the thorn but I could really feel it........I came in, got a tweezers and held my finger in front of what my kids call the funhouse mirror, it magnifies things to 15 X their size.......now these old blue eyes could see the thorn & pluck it out.  I realized that sometimes we need to embrace the lion that exists in each of us.....and sometimes we need to hold out our paw and focus on our inner mouse.  Both animals have real skills that we can learn from & about, not only our differences but that which makes us the same.  It creates a way and a place for all of us.....that is why I believe that there is a place in the sun for everyone.

This is not my normal post & I rarely post these days (I joined DS in 2010).......but I'm still here, thinking, writing & doing my best to be a person beyond the confines, restrictions & boundaries of illness.......I am still me......I may do things differently, but I have also discovered resources that I never knew I had inside me.  I think about all of us.......about how when they hold a march for people like us in our nation's capital all they see are the empty shoes of people like you & me.  Cause we are too ill to march, to be present.......but we are NOT invisible, we are these internally viable lively wonderful precious people living to the best of our ability.  ......Today is a good day, that's why I'm writing here, it's a bit of a celebration....celebrating what I've learned, how I've found ways to overcome and be more of myself.  Earlier today, I watched a show about a young man with an amazing spirit in a wheel chair (the victim of gun violence) who has a foundation called "Disabled, but not really......"  And it gave me all this thinking to do.....I found myself in a place of gratitude.  Today despite the thorns I stopped to smell the roses.

Any corn in this submission is genuine......this girl was born & raised in Iowa.