A Reluctant TOS Prayer

I stopped referencing 'God' or spiritual things after my first few posts because I want everyone to feel welcome here. 
That being said, today I want to share with my fellow TOSers something that has become a great help to me in living with TOS. 

After hearing about my continuing struggle with TOS, someone challenged me to spend some time with the well-known Serenity Prayer. 
Initially, I had to approach it as more of an inspirational mantra, because the very first word of the prayer (God) tripped me up.
Getting past the idea of asking for something from a 'God' I am not so sure is A. concerned about my pain, or B. trustworthy, is hard for me. So I skipped the first word for a while and daily read the prayer, meditating on its meaning for my life.  Does it ever apply to living with TOS!

Everyone who lives with an ongoing pain issue, like TOS, faces things that are not in their control, that they cannot change. 
Your body has betrayed you and gone haywire. 
You endure sleepless nights and foggy days, restless with pain, and wonder what the heck you did to deserve this. 
You try everything you know hoping for pain relief; consult medical and alternative practitioners, tests, surgery, therapy, shots, medications, gadgets, lotions-the list could go on, and still the pain remains. 
It's frankly been infuriating to me that I can't just rip out the cause of the pain and get on with life. 

Thoracic Outlet Syndrome backed me into a corner. There was nowhere to go to get away from the pain, which tapped into my stubborn streak. I pretty much unplugged from faith and life over the last few years. I've used pain as an excuse to not do or go or participate. 
The more I've withdrawn, the more the pain has intensified. I ate to stuff my feelings. Pity-parties with chocolate, donuts, cookies in-hand were happening daily. I gained a lot of weight, which exacerbated TOS symptoms. Add in some prescription medications and their unpleasant side effects and I was a depressed mess.

My daily thoughts were about how angry and resentful I was about being stuck in the grip of this insidious pain. My faith turned into questions and doubts. 
Watching TOS affect the lives of my kids has been heart breaking. Three of us dealing with TOS in one family?! It seemed to me 'God' must be cruel, unreliable, and cold. 
New symptoms on top of the usual TOS appeared; ear, head, and jaw pain. Instead of driving me toward humility and faith, the pain became a wall between me and anything that might touch my spirit. 
Thoracic Outlet Syndrome weighed down my life in every way. 
I'd become a different person, someone I didn't like. That is the state I was in when a very wise woman handed me a copy of this prayer.

After spending some time sitting with the prayer on my lap, reading and thinking, it became clear to me I was at a crossroad. I have been in desperate need of some "serenity, to accept the things I cannot change". 
Would I choose to continue on my life journey with TOS and take the path that leads to my life being taken over by this monster, or would I choose to go another direction, one that requires engaging in my life again? Would I choose "courage, to change the things that I can"? 

A thought occurred to me, that just maybe that bit of scripture that says"...the kingdom of God is within you..." is true concerning the things in this prayer. Serenity, courage, and wisdom are already inside me and I simply need to summon them.

Lately, I've been including the first word of the prayer. That word comes with a lot of questions, and honesty about my disappointments. Over time, my faith is being renewed.  It's looking a lot different than it used to back when I thought my requests would be fulfilled in my favor (according to 'Gods' will) as long as I asked fervently enough.

I'm learning to be ok with the mystery of 'God', and with admitting I can't fix my broken self with myself. However, I can tap into the reservoir of courage and be better, change the things that I'm able to change.

I only see and understand this life in part, and I need discernment to know when to relax and not try so hard..."wisdom, to know the difference".
It's all a work in progress, a journey. But the view on this part of the path is improving, hopeful, even healing.

I hope this well-known prayer may be a source of encouragement for my fellow TOSers as you each choose, bit by bit, one day at a time, how you will live with this TOS companion.
You all inspire courage in me. 
I wish I could take the pain and fix it, for all of us. 
But just maybe this struggle is making us into people with resilience and fortitude that this world desperately needs.

Gentle hugs~

TOS ~ Life XIX

So how are things? Four years later...

I'm so glad I've kept this record of what it was like for me to go through rib resection and healing postop. My four year resection anniversary had me going back to refresh my memory of what I was feeling and experiencing at this time four years ago.
*See new, 4 year postop, pictures at the end of this post. To compare, see postop pictures from 2009 here.

It's interesting to go back and re-read posts from that healing phase. I remember it well.

Truth is, four years after right sided rib resection, I feel a bit stuck in that healing phase...in my mind and emotions. Having rib bone and muscle cut out of my body was dramatic and left me with emotions I am still working on getting past.

The initial healing phase postop was brutal for me because of my nature. I am a very sensitive, type 2 person, always picking up other peoples vibes. I have even been called "touchy".
When I am in pain, my nerves are already on total overload, so any talking, touching, loud noise or movement feels very jarring and abrasive to me. Just ask my husband about trying to comfort me years ago while I was in labor, poor guy. He wanted to help and each time he started rubbing my back I would hiss at him- "Don't touch me!"

However, healing takes time, that cannot be overstated-especially after rib resection surgery where nerves are stretched, things are removed and muscle rearranged. No one can expect to remain still and undisturbed for that extended healing period. I remember feeling so incredibly frazzled all the time after surgery.
Other folks with different natures probably do not experience the same emotional postop healing issues and would take my comments here as overly dramatic. In my experience (and that is what I share here on my blog) that postop phase was traumatic- in fact my psyche has still not recovered. 
Thus, the left sided resection that was recommended, that I realize would spare me from some of the left sided TOS issues I deal with, well it's just too hard for me to fathom signing up for more trauma.

Having said that, my current state is- not too bad.

The long red hair is shorter now. It had to go, too much weight for my TOS neck.

I had additional surgery two years after resection that improved more of my TOS symptoms.

I currently go for ABM (Anat Baniel Method-a type of Feldenkrais) sessions once every two weeks. The mind/body education and gentle movement of this therapy are teaching me how to organize my movements to lessen the stress on my neck, shoulders and upper body. Through this therapy it has become clear that my right side, the side that was resected four years ago, moves more, is free-er, less restricted, and my left side-where I have the bigger cervical rib and still need resection- is more frozen, stiff, and very guarded.

I have many of the common issues I see other TOS folks commenting about on TOS support groups.

Weather affects my pain level.
I have lost upper-body strength from limiting my arm movement.
I juggle a lot of things to minimize the flareup's of TOS pain.
Driving more than a quick trip always leaves me needing pain meds afterward.
I worry about a left-sided blood clot (I'm super careful with that arm when I sleep at night).
I, like most TOSers, continue to seek ideas to manage my life with TOS.

On my list of things to try are; acupuncture, taping, botox injections, Melt method therapy, anti-inflammation diet. My doctor prescribed an antidepressant to help with the pain. I was *very* skeptical and resistant to the idea, but dealing with pain has a way of wearing you down.
I gave in and decided to give it a try. Once I was past the initial startup side effect phase, I am happy to report that I have noticed a reduction in TOS achy pain symptoms.

I take omega 3, B12, magnesium daily. I will be adding vitamin D soon also.

I recently went back to working as an in-home caregiver, very part time, very light duty.

I have gained weight, up two sizes- partly from restricting my activity to avoid TOS pain, partly because donuts make me feel better-at least while I'm eating them.

All-in-all, my life with TOS has its challenges, but they are manageable.

I have found great support and ideas from online TOS groups. I appreciate the people who share their common TOS struggles and encouragement however they can-with suggestions, a word of support, or just offering a place to vent where everyone understands, because we are each living our own journeys... with TOS.


Four-year postop pictures below.
You can see my right resected side is lower than my left side. My neck on the right is straighter also.

The transaxillary scar is barely visible, 2 1/2 inches below the crease.
My armpit is mostly numb, including part of the back of my upper right arm .

 

So that's the scoop four years postop. As always, if you have any TOS questions, don't hesitate to email and ask.

The Uncertainty of TOS

Never knowing...
when or how it will begin, again
with the slightest move
just the wrong way
or from doing too much
carrying a heavy bag
wearing a heavy coat
and the ache begins
a tugging in my bones sort of pain
slight at first
but the familiar sign
of things to come
a cascade of effects
that begins to unravel
from a simple sneeze
or a wobble when walking on ice
pressure from a seatbelt
a change in the weather
unconsciously sleeping in a bad position
now the throbbing has returned
I feel my spirits sink
the pain wraps around my mind
surges through my neck
my jaw, my arm, my head, my back
Pain changes my plans
for the day, maybe for weeks
now, the struggle is not so much with pain
as it is with the emotions it brings up...
unable, weak, dependant
victim, angry, burdened, defeated.
Stops me in my tracks
Yesterday, and the day before
no one would have guessed
Odd how you can learn
to live with a level of pain and dysfunction
and not really notice it
Today, suddenly, out of the blue
I am laid low once again
back in my chair
back on pain meds
back to blaming myself for this fluke
for not doing enough therapy
for not being careful enough
like it is my fault
that my body is this way
out of my total control
with a mind of its own
I have no choice, backed into this corner
so I slow down
I breathe
there is no 'doing' now, only being
getting through it
enduring until another day
I remember somthing I once heard
that the rings of a tree show signs of struggle
in years of drought or stress
and that growth comes after
In the stillness now, I sense something new
even in the midst of the pain
courage, depth, compassion
resilience, insight, dignity, wisdom
I ask myself the question-
who would I have been, without the pain?
shallow, vain, hurried
callous, unseeing, impatient, unaware

In that understanding, lies the treasure.