Thursday, October 5, 2017 daughter just had more TOS surgery

My daughter had rib resection surgery on the left side this week.
Symptoms have been increasing on her left side for the last four years.

She has restricted her arm movement and done what she could to avoid pain
and numbness for a long time. 

When her arm started going numb washing her hair, it was time to consult about surgery.
Everything went great. Transaxillary (armpit incision). 
There was lots of extra muscle from the small cervical rib. 
All of first rib and cervical rib tip removed along with excess muscle. She found a new surgeon who trained with Dr. Brantigan in Denver not far from home. 
She kept her rib bone this time.

The doctor said he "expects things should really improve for her now".
She's done physical therapy for her right side for nine weeks  to strengthen and prepare for surgery.
Now for recovery...
I'm looking forward to seeing her not have to restrict herself and be able to give bear hugs...just not to me.

I'm an old Grandma now, and I pretty much just avoid what causes flareups- pretty much.
Watching what my daughter is going through recovering from surgery...I think I will just keep living with TOS the best I can.

Gentle hugs~

Tuesday, January 24, 2017

TOS Update - 2017

Life pretty much is what it is, with TOS.
Both my adult children have returning symptoms, years postop.
I live a limited life, careful how I move, sit, etc.
Life goes on, one day at a time - even with TOS.
I hope my fellow TOSers are doing well.

~Gentle hugs.

Sunday, January 10, 2016

Not much new TOS-wise

I have gone back to work part time, and experience flareups of TOS nervy pain I'd say a few times per week.

My discipline of doing p.t. stretches at home and sticking to an anti-inflammation diet went out the window several months ago. Therefore, more symptoms have been cropping up over the last few months, at an increasing rate.

You would think that since I've lived through these TOS issues for so long, and then found what worked to reduce my symptoms, that I'd just go back to doing what I know to do-right?!
Except it's not so easy...the discipline...doing the no-fun, painful stretches when I could curl up with a book or bake something. Sticking to the diet that had me 20+ lbs lighter than I currently am (and feeling so much better)...why not *just* go back to that?

I suppose I've been choosing the easier route, casting aside discipline, indulging myself in carbs and Netflix marathon days because it has felt mentally too stressful to stick to the highly methodical way of living that had proven helpful. Dealing with some personal life issues left me drained of the will-power to keep juggling so many things.
I just wanted to let my guard down. Relax.

That was six months ago.
Old habits are back, along with old aching pains.
TOS does not care if I need a mental break from its constant nagging.
TOS does not care if I don't want to carry its baggage anymore.
TOS is with me, and the more I try to ignore it, the louder it screams for attention.

So pay attention I must.
By deciding to get back to what I've learned works for me.
Stretching. Staying active. Enough sleep. Clean diet, low carb, less caffiene.
Giving. Finding fun and joy, having dreams, moving forward instead of parking in one place (the recliner).

Here's to a better 2016 for all my fellow day at a time!

Gentle hugs~

Tuesday, September 1, 2015

Time for a TOS life update

Hello fellow TOSers!
I have not blogged about my journey with TOS much this year.
I went back to work the beginning of 2015, and over the past six months have worked at trying to adapt the work setting to accommodate my TOS issues - to no avial.
Just recently I threw up the white flag and gave up trying...with this particular job (office work).
I am not deterred from continuing to try to find something that I can do, as I still feel I have a lot to offer and can be a productive employee.
As you all know, finding just the right job that won't aggravate TOS symptoms is quite a challenge.
Never the less, I forge ahead!

I am back in physical therapy just this week, after several months away.
I must confess, with the attention I've been paying to my job, I have totally slacked off on the exercises I'm supposed to be doing at home...and as predicted, had a huge flareup just a week ago.
Nothing motivates me to get back to staying ontop of doing my exercises and regimen that works for me to keep symptoms as low as possible like having a flareup of pain knock me on my ---!

Thoughts of applying for disability have floated through my mind.
For now, the mountain of looking for work is one I can face.
The mountain of trying to get disability I'm not prepared to climb just yet.

Gentle hugs,


Thursday, May 7, 2015

It's been a while!

TOS life update - I went back to work a couple months ago.
I've consulted my physical therapist about ergonomics for my desk as some symptoms have flared with being on the phone, reaching to do mailings and work on projects.
I continue to juggle things, take supplements, exercise, recently revisited physical therapy with the recurring symptoms to see what I might do differently.
I'm supposed to get a plastic pulley, some clothes line and a hook to make an overhead rope pulley to challenge my upper body and arms.
I'm supposed to be mindful of the chin tuck.
I'm supposed to do arm glides and exercises that will help with stability.
I have not been as 'on my game', doing what I should lately, though I remain dedicated to living well with TOS. Thus, my renewed efforts to pay attention to what I need to do to take care of myself.
I hope my fellow TOSers out there are finding what helps them minimize the pain and plug-into  life.

~Gentle Hugs

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~