Friday, October 3, 2014

Two TOSers go to Artprize

The TOS daughter and I went to artprize, a city-wide art competition where people vote on their favorite art on display through out the city at several different venues. Lots to see and lots of waking.

We both began our day excited about all the new things we were going to see, feeling energised and prepared for the day ahead.

As usual, we thought ahead about what to wear, light layers-nothing heavy that would cause symptoms to flare.

Walking around with hands in pockets is pretty common for both of us. We noted to each other partway through the day that our necks hurt. We had both been putting our hands in our coat pockets to avoid walking with them hanging down-which surely causes neck and upper trapezius tension. But the weight of our hands in our coat pockets pulled our coats down on our necks and had the same result-neck pain.

TOS daughter said she tried walking with her hands in her pants pockets, but that just made her have to pull her pants up more-which caused arm and neck strain, so it was a no-win situation with the pockets today.

(photo of the breathtaking exhibit Intersections, by artist Anila Quayyum Agha.)

One problem for TOSers with being out and about when there are alot of people is that there are social requirements-like holding the door open for the people behind you. Many of the artprize venue doors in downtown Grand Rapids are very heavy and difficult to pull open. I try to use my foot to help open and to hold doors as much as possible.
It wound up being easier to just open the door and let people entering behind us to go ahead instead of awkwardly holding the door with one arm from behind while still walking forward...really hard on a TOSer arm.

TOS daughter said she was perfectly fine with the fact that the shoes she wore to walk in all day made her feet hurt, because her aching feet distracted her from the pain in her arms and neck.

Also, several art pieces were hung up very high. TOS daughter wanted to lay on the floor to look at some intricate ceiling detail. We both had to just stop looking up at things because we were going to both wind up frozen, unable to move, looking like one of the exhibits! It's funny to us that we can commiserate about the same quirky, TOS way of handing things; we get it, but nobody else would.

It was a rainy, windy, and chilly day for walking around the city all day. The weather alone was enough to make muscles tense up and cause TOS pain to flare; you know how TOSers are living barometers! We both forged ahead through moderate headaches all day. 

Though we had our TOS things to be mindful of through out the day, it was an AWESOME day!

SO much gorgeous, lovely, fun, thoughtful, heartbreaking, beautiful stuff to see. My personal favorite piece was a glass mosaic, Into the Autumn Woods, by artist Sandra Bryant. Wow.

I was captivated by artist Christopher Capozziello, and the photo exhibit of his brother who has cerebral pasly. Christopher asks some pretty raw questions that people who live with, or who watch loved ones live with painful physical conditions ask. "I want answers. I want explanations for why some suffer and others do not." The last frame of his exhibit is of his brother hugging their mother, with a thought about how he has personally learned how to live by watching his brothers life. 

Another touching piece, by artist Eric Staib, is a painting that depicts the downward spiral of questioning, suffering, and some of the very real thoughts and emotions of those who suffer.

I kept thinking today how the world and life is just like the art we saw all day; sometimes so incredibly
moving and beautiful, and sometimes so horribly sad and dark.

If you have TOS, or a related physical challenge, I encourage you to get out and take in life. Even though you have TOS as a thing to manage, don't miss out...go see and do and live!

We know it's not easy, living with TOS pain can be a depressing hassle. Even with all the things we TOSers have to stay mindful of just to function, we still can, and should, live well...even with TOS.

Gentle hugs~

Friday, September 26, 2014

My Physical Therapist Said - Part 8

How often have you thought you would love to detach one or both of your arms because they hurt so much you just can't stand it any more?

I told mt PT about having increased arm pain at a recent appoitment.
I mentined that my daughter and I think it would be great to work on getting a patent for 'the detachable arm.' But I also realise it is quite possible to detach your arm and still feel the arm pain.

My physical therapist said, "Now you're getting into the concepts of pain and the brain in Explain Pain!"
I told him I remembered an episode of House where a man felt excruciating pain in his amputated arm, and the good doctor fixed it by sticking both arms in a box with a miror so he could see both hands clench his fist and release. The brain got the message and his pain was relieved. Pretty cool.

There are elements of this that may apply to those of us living with TOS.
We get set up in a cycle of pain, expecting pain, being used to the pain.
How much of that is our brain being addicted to giving us pain signals, and how much is actual physical distress? The answer to that is very indivdual, each TOSer has a variation of things going on with their symptoms. But I think it is worth thinking about how much of the pain we attribute to TOS is actually from a physical cause, and how much of our 'TOS pain' may be of another nature; ie, our brain controlling the show and overreacting.
It's something to think about.

Don't hang in there & gentle hugs~

Wednesday, September 17, 2014

Big TOS Medical word of the Day-Etilogical

Etilogical =

a. The study of causes or origins.
b. The branch of medicine that deals with the causes or origins of disease.
a. Assignment of a cause, an origin, or a reason for something.
b. The cause or origin of a disease or disorder as determined by medical diagnosis.

Wednesday, September 10, 2014

My Physical Therapist Says - Part 7

I went to a recent physical therapy appointment feeling a bit discouraged, dealing with an arm pain flareup.
Here's part of the pep-talk my physical therapist gave me-

"This is just the ebb and flow of life. As you work to get stronger, things are going to happen to challenge you; its ok. Hang in there."

*Insert here the sound of a needle scratching across a vinyl record, which is what I heard at that moment in my head.

I told PT that 'hang in there' is possibly the worst thing you can say to encourage someone with Thoracic Outlet Syndrome.
Think about it- arms, neck, pain, hanging..."hang in there"?!
We have commiserated about this on the TOS facebook support group; it's not a great admonition for someone living with TOS.

As I was leaving pt that day, I hear from across the room- "...and Robin, don't hang in there."

My fellow TOSers will understand when I say this; that may be one of the most thoughtful things anyones ever said to encourage me.

Don't hang in there & Gentle Hugs~

Friday, August 29, 2014

Big TOS Medical Word of the Day- Costoclavicular


: of or relating to a ligament connecting the costal cartilage of the first rib with the clavicle

Friday, August 22, 2014

My Physical Therapist Says Part 6

I asked my PT what others living with TOS should look for in a physical therapist. He said no one else is going to do things exactly the way he is treating my TOS issues because everyone has different training and approaches. However,  if you look for a physical therapist who focuses on head and neck injury/trauma, that should be a good place to find someone knowledgeable about TOS. A main source my PT utilizes is the book Explain Pain, Butler, Moseley and information by noigroup.

Standing behind me, poking around my neck (cervial rib), shoulder area, PT commented-
"Your tissues have changed."
With a quizzical look on my face, I asked what that means.
Response-"When you first started coming here here I would just barely touch you here and get a response, it didn't take much. But your tissues have changed; the tone is much better, because you've been doing alot of different things to affect that change."

I mentioned to my PT about my daughters resistance to trying physical therapy (even though she really needs to). Response, "Well, I'm glad you're on board. You are in a good place to say to people living with TOS, "Hey, there's CAN get better."

Sunday, August 17, 2014

Seat design causing neck strain and health issues!

Take a look at these seats and tell me- why are they all concave and curved forward at the top?!
I understand 'safety' is the reason given for the design, but try having TOS and have to sit in one of these seats for any length of find out pretty fast that your pain is about to flareup!


Topping the list of seats that are terrible for TOSers, is the car seat. There has been nothing worse for my pain flareups than having to ride in someone elses car with a head restraint/headrest that pitches forward.
This paper addresses some important issues in car seat design, (Link)Automobile headrests extending too far forward with solutions.
A quote from that paper- "In most cars, the contour of the seat backs do not adequately match the contour of the drivers back and the headrests are too far forward."
As this Forbes article confirms, there are alot of people unhappy with the strain on their neck caused by the car seat head rest.
You may write and express how car seat design is affecting your health (a cause of TOS pain flareup) to:
U.S. Dept of Transportation
National Highway Traffic Safety Administration

A few ideas for TOSers to adapt their seat:
As the paper suggests, with warning, you may remove and turn your head rest around.
I have to do this or I cannot drive. I may be taking a whiplash injury risk, but leaving the headrest in the curved forward position is not an option for me.
 (Maybe this is not as much of an issue for those living with TOS who are taller?)

My recommendation for furniture for shorter to average people is furniture made by Best furniture Company.
I realised our living room furniture was contributing to my pain because it was SO slouchy, big and caused me to have terrible posture.

Other options to adapt include:

Happy driving fellow TOSers, gentle hugs~