Having a moment...

I'm having a moment tonight.
words are replaying in my head I heard earlier - "this journey is about the long haul for you".
...the long haul.
I've been so fixed on whats right in front of me, trying and doing new things
that when I stop to take a look at the long view
it feels so overwhelming
the thought of having to manage TOS the rest of my life.
makes me feel the words of a poem.
I sit here thinking-I really don't want to do this, don't want to live life always fighting back the inevitable.
But whats my choice?
Go back to how things were before I decided to become a project for you all and hack at the things weighing me down, change things up, and try to be better?
Go back to being miserable and frozen and unplugged from life, angry all the time?

With all my efforts, I'm still just on the edge of this thing-
I had hoped to 'get past it.'
Now, it seems just turning down the volume of the pain is the most I can hope for.
I want to be free of TOS, but these are the cards I've been dealt.
Having to give up on things I wanted to do with my life-knowing they will never happen-
damn.
I'm sick of myself, sick of how I have to cope.
I don't think I can do a long haul
I've always just done short hauls
and then gotten tired and afraid and sat by the side of the road
and gotten fat and weaker
I'm so afraid of whats ahead.
I hate this.
The easier way is calling my name,
take the pills, stop fighting so hard
relax
eat, drink, stop thinking so much
check out, numb it, let the TOS take over instead of trying to push it back
just forget the fight.
If its gonna be a long haul-if I'm never going to get past it and pain is always going to chase me-
whats the point...get stronger-for what?

~ ~ ~

I see my fellow TOSers nodding their heads.
I know you get it.
I wrote this a year ago.
So much has changed since then for me.
All because I chose to live better, to start paying attention to what I needed in order to live as well as possible with this thing.
It continues to be a lot to juggle just to be functional, but it's worth it to live and not be sidelined by the pain!
I hope you will be encouraged that it is possible to live well...even with TOS.

Gentle hugs~

How to Attack Life's Challenge with Grace

I've been trying to do just what Brendon talks about in this video for several months now...attack my TOS issues head on, and from every possible angle; challenging negative thought patterns, supplements, physical therapy, diet, even emotional and spiritual pieces of the puzzle.
Recently, I've been a bit discouraged.
I think I'm doing better, then pain ramps up and I feel like one step forward, two steps back. 
It seems a bit divinely providential that I ran across this video today.

I needed to be reminded of the necessary balance between fighting TOS, and being at peace with it while I'm trying to change some things.
Like Brendon says about his 'War and Peace Strategy' in this video-"If you've got a challenge in your life, you've gotta go to war at it, and you have to have peace about it. Major challenges in our life demand multiple areas of attack. You're so overwhelmed with the suffering, the challenges- you've gotta start overwhelming those things with the number of areas you're hittin' that baby. As you're working your best towards changing it (not approve of it or settle with it) have peace, accept it with no negative attachment. It's ok as it is." 

That last line is tough, so tough for me.
I think he's right.
I think acceptance and peace may be the key to living well with pain and challenges, but I'm not there just yet.
I'll keep workin' on it.

Gentle hugs~

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~

My assessment of physical therapy, so far.

My ear and jaw pain was gone for two days. I say 'was', because right after going to p.t. the other day, the pain was back. Seven hours later, the feeling of a knife in my ear, head, and upper trap is still there. Add to that a discussion about nerve gliding and working on the stiffness in my neck/spine leading up to eventually doing the arm bike (which I loathe from previous experience) and the rowing machine to gain strength. A wall went up in my mind as soon as p.t. mentioned this, even though he tried to talk me through it.
"I wouldn't take you through what we've been working on to calm and normalize things just to throw you on a machine for you to flareup, we're going easy. But still, we are headed that direction."
I'm so nervous about that. I'm sure it showed on my face.

He patted me, said the return of the pain was just temporary.

He talked to me about the pain cycle a bit.  Using E-stim is supposed to help temporarily break that pain cycle, hopefully long enough to give me a chance to be more active, gain some strength.

My assessment of p.t. at this point-
Sometimes I leave p.t. in more pain than I went in with, which is a downer.
Having that pain several hours later, and the next day- is a bummer.
Feeling like I'm at the mercy of the pain is depressing.
I want to believe things will get better.
Wondering if maybe it -"just is what it is", and I should stop torturing myself.
And then...I wake up one day without pain, and that is a good day!

Plus, I have to admit, my ear, jaw, head pain is not constant like it was for a long time. Since starting p.t., the pain comes and goes now-with no predictability, but its not all the time--a definite improvement.
So I'll keep doing all the exercises and stick with p.t.

I hope my experience with therapy will be helpful and give some hope to my fellow TOSers...because we TOSers need hope.

Gentle hugs~