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~

More email questions...

Another recent email asked what a typical day is like for me now after one side rib resection. Some of my reply...

I do not need pain meds most days.
However, I do take several of nutritional supplements and have changed my diet drastically hoping to reduce inflamation.
*Future post in the works on diet, inflamation and their possible link to TOS.

I DO drive, but I have to hold the seatbelt away from me.
I have quality of life, and live without debilitating pain for long stretches.

The deal is, I never know when a flareup will occurr-like a dark cloud that follows me around all the time.

This uncertainty gets to be a big mental roadblock for me to have to push past so that fear does not keep me from living.

Before surgery, I hurt all the time and got even worse flareups!

Now, I feel good, some constant muscle tension in my neck/shoulders, but not unrelenting pain. Some slight ache in my arms at times. (I don't always mind my own advice about posture.)

If I overdo it, say too much driving, or carrying something, the arm throbbing starts in and can get pretty brutal. Moreso on the side that has not been resected yet. It slowly goes away within a day or so.

Flareups of pain have occurred randomly over the last few years since surgery.

It has gone as long as several months inbetween acute flareups, and it has been as little as a couple weeks inbetween episodes of acute pain.

My Dr. said he also took as much of the c-rib as he could, but really just the tip, so I still have most of both cervical ribs.

I sometimes wonder if it might have been better to have the actual crib removed up in the neck, but I did alot of reading on that procedure and personally felt more confident in my doctors transaxillary(armpit) approach.

I've learned to break things down into smaller tasks-carry lighter loads, move a little easier.

I was quite down in the dumps before my surgery and during recovery- you could say depressed. Pain has a way of being depressing, to say the least.

I too was so afraid I'd never get to live the same again-like my old self before the pain.

I am thankful to report I do not have debilitating pain most of the time now.
The flareups do get me down occasionally and remind me I have to be vigilant with all the things I juggle, reading, learning, trying new things to avoid pain.

It has helped me tremendously to feel informed and understand medically what is going on with my body.

I hope that answer your questions.

Take care!

Address the Fear

My daughter worries.
What will her future be like?
When will the symptoms appear on the other side with the same constancy that moved us to pursure rib resection a few years ago?
What jobs can she get with limited use of her arms?
She worries over what may bring on the pain.
Should she even try for jobs that require lifting, or repetitive arm movement, or will that aggrivate matters?
Should she even consider certain career tracks that may be appealing to her because she may not be able to follow through?

She is at school now, carrying loads of books and stuff several floors of stairs up to her dorm. Her arms throb. But she does not want to complain, she wants to be like everyone else.

Oh, those cervical ribs.

She has had to quickly educate her friends about TOS, asking them to not hang their arm around her neck or hug or try to massage her shoulders.
Every time these questions come up, I remember well the advise of the Doctor. However, my thought is to give it a try! See what happens.
Don't let a diagosis hold you back.
Learn your limits by giving it a try.

Maybe you can't do as much as everyone else, or do things the same way-but you can adapt, adjust, learn and find ways to accomplish your hearts desires.

How to alleviate fear?
Education!
Support!
Ask for help!
Health resources
Medications
Prayer

Being open, honest and flexible regarding options for treatment and assistance is key to living the fullest life possible with TOS.

When hugging hurts

I need my own bubble. One I could carry in my pocket and inflate and get inside whenever the need arises. Like Sundays, at church. Let me explain...


We go to a smallish size church...around 100 people.
They're friendly folks. Alot of them like to hug, in fact they practically insist on it. It has been all I can do to fend off well-meaning people who want to hug me, but do not realise it is now literally physically painful for me to hug.

This past Sunday our pastor talked about touching.
Specifically, about how Jesus physically touched people.
Several scripture references about Jesus' touching were read and expounded upon.

When the service was over, everyone was hugging. I couldn't avoid all of the hugs and had to head for the car to go sit alone with my throbbing neck and arms.

I'm seriously considering not going to church for a while because of this.
Even though I tell the nice church people, "I'm sorry, I really can't hug", and point to my neck, people still can't seem to refrain from hugging me. The last three weeks I've left in more pain than I walked in with.
I just can't take it right now.

The alternative is I could load up on meds before church...that might be an interesting experiment actually.

Then I'd probably be hugging too many people for sure;)