Wednesday, January 28, 2015

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-
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
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~

Friday, January 16, 2015

My Physical Therapist Said - Part 11

"Be in your own world while you're at the gym-work your program, don't be pressured."

"Have fun.  It’s work so expect it.  
When you need to recover - it’s ok. 
Remember, the turtle wins the race.
This is a continuation of a life change.  
You’ve done great work and will continue!"

~ ~ ~

I'm sure gona miss those pep talks.  
I'm very grateful for the help my P.T. has given me this past year.

I'd given up on physical therapy being helpful after all the awful torture other therapists put me through. 
I hope after following my journey in physical therapy this past year, that you are encouraged to give p.t. a try- or try again, try some more, with someone who knows neck and arm issues.

Always listen to your own intuition; if something isn't working- stop.
But don't stop trying.

It's hard to believe when you're battling pain, but it can get better.
Start small, each day builds on the next, do what you need to do for you.
Find support, ask for help, decide to stick up for yourself.
TOS is a bum deal, but you can chose to live as well as possible with it.

Gentle hugs~

Wednesday, December 31, 2014

TOS Resolutions for the New Year

* An MRI, to see what's going on since rib resection back in 2008, since my daughters rib entirely regrew and I continue to have nerve/muscle issues.

*Flouroscopy guided injection into spine, C4, to see if that helps

*Try acupuncture

*Work on core strength and stability at the gym, continue with physical therapy for upper body at home

*Meet more of my fellow TOSers, hopefully for a 5K walk/run

*Continue to tweak the TOS diet, more green smoothies, fish, etc...

*Essential oils-research, try.

*Try Biofeedback

*Figure out better, ergonomic seating options, especially for time on computer

*Keep diggin' into this TOS thing, learn more, understand

*Kick TOS in the butt

*Share my journey and encourage my fellow TOSers that even though the pain can be horrible, life can still be good.

*Live well!!

Saturday, December 13, 2014

My Physical Therapist Says Part 10

I have one more P.T. appointment in a couple weeks, then I'm on my own for a while. I can't lie, I'm a little anxious about that.
Words fail me to adequately express how much I have appreciated the understanding, knowledge and approach of my P.T.
After a few BAD rounds with therapy over the years, I walked into P.T. nine months ago very guarded, but desperate for change.
My main hurdle was, and continues to be, in my mind.
For example, I had a pain flareup last week that reminded me of the godawful pain I had most of the time a year ago, and it was discouraging.
I thought I was stronger, and better, but there it was screaming at me, messing with my head. I forget that I spent years being angry and inactive because of the pain. I get impatient and want things to progress faster, but things have come a long way, and for that I'm very thankful!!
So, I have been thinking about how I can keep my motivation going since I won't be going to P.T. Going backward is not an option, especially after that pain attack last week.

So I decided to face a fear of mine and I joined a gym. *shudder*

It's whole new, foreign, scary world for me.

P.T. guy said this is a good thing for me to transition to, that I should work on lots of cardio, treadmill, bike, eliptical (but be careful with the arm piece), and lots of leg work.
NO ARM MACHINES for a while.
This will challenge the nervous system in new ways than what I've been doing.

I'm supposed to keep doing my regular arm glide stuff, and also work on core stability, on a Bosu Balance Ball at the gym, or sitting/balancing on my exercise ball at home-no touching hands and feet.

P.T. believes after several months of working on this at the gym on my own, I should be in a position where I am strong enough to tolerate revisiting P.T. and he can then work on challenging the nerve and working toward making more progress in desensitizing and reducing the flarup potential.

So, I have a new little TOS mountain to climb on my journey, one step at a time. The view from this part of the journey is much better than back where I was just ten months ago. So, I'm hopeful, and I'm moving forward, even if it is a bit uphill.

Just this week I heard someone say that on our life journey, there will be different people along the way at different times. I'm grateful beyond words for the people who have been with me on my journey this past year. My heart overflows.

Gentle hugs~

Thursday, December 4, 2014

My Physical Therapist Says Part 9

Several weeks ago, I asked my physical therapist for more explanation of how working to improve *strength* will help my TOS situation.

With all the chronic muscle tension and spasm I've had for years, how can I work on strengthening- don't I need to *relax* the muscles?
PT said -"Think of it this way- compare muscle to a rope. You pull on the ends of the rope and the outer fibers are stressed and break.  Over the next couple days, as the recovery and healing takes place, is when you actually gain strength. You don't gain strength as you are stressing the muscle, but afterward, in the repair and recovery. Trust me on this, strengthening and stability are the keys to turning things around for you, but it's going to take time. It took a lot of time for you to get to this place."

I asked about how nerve pain could be reduced by strengthening when I am tensioning the muscle that spasms and tightens its grip on the nerve?!

P.T.'s response-"In a sense, you're right in your thinking; however, your nerve can be hyper sensitive. You use both your arms but the right tires faster and is more painful than the left, (my left arm is usually fine). It seems the nerve is maybe being grabbed by muscle more on the right side.

This journey is about the long haul for you not a quick fix. Keep going. 

You will have days when it flares, and it hurts, but keep going.

You have been very motivated and done the right things to affect positive changes, keep going. 

Things are really very different for you since the time you started here, your tissues have changed. TOS is a really difficult thing for P.T.'s. We have a hard time with that particular disorder, so all the things you have done on your own to change your situation has helped tremendoulsly. Keep going."

I've been trying to sit on my big exercise ball, balancing without touching the floor or the ball with my hands or feet. As soon as my feet leave the floor the nerve pain kicks in and gets worse the longer I stay there.
I asked P.T. why that happens.
"It requires core strength and you're challenging that with what you're doing balancing on the ball like that. Twenty minutes is too much; of course it would cause your pain to flare up." (which is a bummer because it's kind of fun).
I told him the fact that the pain kicks in the second I start balancing makes me think of the muscle that was removed from my neck, and wonder if that pain will ever really go away?
Response-"I dont know, but you are gaining strength, and your tissues have changed so much-keep going."

I hope all my fellow TOSers can glean some encouragement to *Keep Going* on your own TOS journey.

As always, Gentle Hugs~

Sunday, November 30, 2014

Gentle Hugs T-Shirts and Pins are now available!

Many thanks to fellow TOSer, Aubrey, who designed this TOS awareness logo with the Gentle Hugs message!! You can order it on a pin, a shirt, or other items here -

I don't know about you, but I will be wearing this shirt to any family gatherings from now on!

Gentle hugs~