Sunday, November 23, 2014

Yule Run I'll Walk ~ Guest Post ~ Sabine

Several months ago, I was inspired by our fellow TOSer, Teran (previous guest post here), who ran a marathon and posted in a facebook TOS support group about her accomplishment.
What struck me, and pushed me out the door to start walking, was when Teran said, "you are not in the waiting room of life."  I'm thankful she motivated me to get moving through the TOS pain, because it led to being able to meet and walk a 5k with another fellow TOSer, Sabine.

I saw on a TOS support group that Sabine is a fellow TOSer and a runner who lives nearby. So we picked The Yule Run I'll Walk 5k to meet and walk together. I'm so glad we did!

It was a drizzly winter night for the walk, but not snowing and blowing, so we lucked out. I had more nerve pain than usual for the walk, from a combination of the chilly rain, a touch of anxiety that always makes those trapezius muscles tense up, and a new exercise I've been doing that has irritated some things. You can see we both made sure to have our TOS necks covered and warm!

The path had a pretty christmas light display, but was treacherous to walk in spots from the recent snow storm. I was glad I wore the plastic grocery bags on my feet between layers of socks, even though we laughed about how fat it made my ankles look.
As we walked, we talked a bit about our TOS issues. Sabine shared more about how she was diagnosed with compression, Paget Schroetter Syndrome, and treated for a blood clot that caused her arm to painfully swell and turn purple. She has not had surgery to address the compression, and I understand her fear very well. If you do much reading about TOS, especially on any forums, you see quite a mixed bag of results from decompression resection surgery.

We were keeping up a pretty good pace walking and talking when Sabine asked me if I ever have pain or problems from turning my head to one direction...and then we switched places as we walked because we were on each others bad side! The funny things you have in common with TOS.

It was great to discuss TOS issues and ideas for raising awareness with someone who understands because they live with it too. We commiserated about people thinking we don't look like we have a pain syndrome, and how frustrating it is to not be taken seriously.

We talked a bit about our common headaches and sitting with head forward posture as a problem that makes pain flare up.
We agreed that we both have to sit directly in front of the TV, no turning the head even slightly to the side for very long. And when we parted, she gave the gentlest of hugs.
Here we are at the finish line with our Ugly Sweater Mugs. According to Sabine's awesome sport watch, our distance was 3.20 miles, average pace 15:16, best pace 13:32, total time 48:51...not too bad considering the slippery conditions.

Had a little achy arm and hand tingling on the drive home. The morning after the 5k walk, nerves are twitching from my armpit down into my hand, increased neck and head tension, upper traps are unhappy. But it was worth it!

I highly encourage all my fellow TOSers to connect with others who are living with similar physical issues. Sharing our common bond (and the things that help us to adapt and live well-even with TOS) gives me some hope and helps me to not feel so alone on this peculiar journey.

May you also have that same hope.

Gentle hugs~

Friday, November 21, 2014

Diet affects pain and physical challenges more than you think!

If you've not heard of Dr. Terry Wahls, watch this Ted talk video and be amazed at the results she is experiencing in the reversal of her own MS disease by changing her lifestyle and diet!!


I know it sure inspired me to keep at it. I have seen good results from knocking junk out of my diet as well, able to get off meds, moving more, less pain.

http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min

**If you are a TOSer who is experiencing improved health and less pain from diet changes, please email me, I'd love to interview you for a guest blog post!

My fellow TOSers, Don't hang in there & Gentle hugs~

Friday, November 14, 2014

TOS Walking

I spent a few years being pretty inactive, using TOS as an excuse to not do much.
Seven months ago I began walking a half mile a day. I got increased aching and nervy zappers in my arms, neck, and head from walking, but I persisted and increased my distance slowly.
It felt good to accomplish something, one step at a time, an entire half-mile. It was an improvement. It was a start.

I decided I was going to have pain if I kept sitting on the couch, and I was going to have pain if I went for a walk. I might as well go walk- the fresh air would do me some good and walking might help in the long run.
So I've continued to walk.

The last few weeks I've been logging up to 20 miles per week on hilly dirt roads. With an earbud in one ear, mp3 player tuned to NPR or some peppy music, I take off and aim to complete my walking goal of the day. Around the block (3.5 miles)? To the end of the road and back (2.0 miles)? To visit a friend in town (3.0 miles). As I walk, I remember stories my grandma used to tell me (repeatedly) about walking to school 3 miles one way, uphill, in the snow. Does everyones grandmother tell that story?

Walking with my arms bent helps reduce the hand swelling a bit. I push myself to hit a 4 miles per hour pace. Nervy arm, neck, and head pain still increase after a mile or so, especially if it's colder or windy outside. I try to push through it, sometimes slow down for a bit, let my arms hang at my sides a while, then pick up the pace again.

I googled 'walking and hand swelling' and found it to be common and not just a TOS thing, due to restricted circuation. I open and close my fists a lot while I walk and grab a frozen o.j. can when I get back home.
I've found that if I push too much and walk too far I sometimes get more pain the next day, but if I'm inactive and skip walking a day or two I also get increased pain. Balance is key for me on my journey with TOS.
Some of the benefits of chosing to walk have been stress reduction, weight loss and connecting with a few neighbors I normally wouldn't.

So I'll keep walking, because even with TOS and it's glitches, I can.

*Stay tuned for a post about a walk I'm doing with a fellow TOSer soon, looking forward to that!
I'd love to walk a 5K Spring 2015 with a fellow TOSer...please email me if you're interested!!

Gentle hugs~

Friday, November 7, 2014

Time to change the narrative.

I found this podcast to be VERY encouraging, and a bit challenging. I hope you will give it a listen.

http://findingourhunger.com/2014/09/10/unnarrative/#comment-201

As the podcast mentions, I've found it is important for me to challenge and change how I consider my life and it's physical challenges.
I'm learning to not say "I have TOS", but to say "I live with TOS".
And yes, for me it does matter how I frame the situation. It is important for me to keep TOS as a separate entity, not as my identity. It just happens to be part of my baggage, not my whole life.

The main speaker in this podcast says she is "grateful for ms".
That got me wondering,.. is there any way I can or shoud be grateful for TOS?
And I have to say, TOS has made me have to pay attention, become mindful, stop numbing and plug into my life. TOS has made me stronger in some important ways, for that I am grateful.

My fellow TOSers- Don't hang in there & Gentle hugs~

Saturday, November 1, 2014

5 Ways You're Not 'Living' With Chronic Illness - article share day

This short article gave me a much needed kick in the pants today. Excellent advice. I hope you come away inspired to live your best life possible...even with TOS.
http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html

 Here's an excerpt;

"Chronic Illness is:
  • Coped with
  • Managed
  • Organized
  • Contained
  • Controlled
  • Lived with
  • Handled
  • Confronted
Managing chronic illness means developing strategies to assist you in moving forward with your life's greater focus with as minimal suffering as possible. Don't head-butt your disease, outsmart it."

My fellow TOSers-Don't hang in there & Gentle hugs~

Monday, October 27, 2014

Would I have rib resection surgery again - ??

Maybe.
I would seek a second opinon from someone who removes the cervical rib...especially since my daughters first rib grew back-entirely, and all wonky, and all three of us had pretty much the exact same surgery and have had symptoms return.

The specific physical therapy I've had this past year has been so helpful that I think If I'd had good p.t. 5 years ago (with someone specializing in neck trauma who knows TOS) I probably would not have had the surgery.

Because for me, with surgery-which was somewhat helpful, I also now have new complications-mostly from the missing neck muscle taken with the first rib.
So if I'd had good p.t years ago, instead of bad p.t...then maybe no, I would not have had surgery to have my first rib removed through my armpit.
To be clear, all three of us are thankful for the surgeon who did our resections. At the time, surgery was our best hope. We didn't know any different, didn't know of any options, and it did improve things, somewhat.,.for a while.

The journey with TOS goes on.

Fellow TOSers, Don't hang in there, & Gentle hugs~

Tuesday, October 21, 2014

TOS update - Exercise, Diet and Supplements...oh my!

Lately my TOS pain (nerve pull, sharp, aching, throbbing, a little twitchy, from base of my neck, down arm into hand, up neck into head) comes on sporadically, aggrivated by driving-especially when it's windy, or if I've had bad prolonged sitting posture (head forward).
The jaw/neck/head pain that I believe is partly a result of having anterior scalene muscle removed when my first rib was resected...that pain was better several weeks ago, but its been ramping back up lately. I think the cold weather is partly to blame. And I still feel like I want a kick-stand for my head by the end of most days because my head feels heavy, weaker, and unsupported on the resected side. I actually do prop my head up with my hand sometimes.

I'm down to p.t. every two weeks, for a few more visits, then I'm on my own for a bit. I'm curious to see how that is going to be. I'm hoping I can stay motivated to keep at it through the fall/winter seasons when all I really want to do is hunker down, read, or hybernate.

Here are couple new p.t. exercises I've been given to work on at home-

1. Roll exercise ball up wall with forearms, 20-40x
I don't roll up quite as high as pictured. When I first started doing this TOS symptoms started kicking in around 6 reps. After a couple weeks of doing this, I don't feel the heavy-tingly-arm ache until about 15 - 20 reps.


2. Push meduim size rubber ball against wall with back of head, turn slightly right and left while pushing.(center pic)

I've been walking 2-4 miles most every day, even on flareup days. I figure I'm going to have pain if I sit on the couch or if I go for a walk, and I've found I sometimes have less TOS pain after walking(sometimes more). I'm even ready for winter with a manual treadmill.

My diet remains pretty simple, and I DO believe losing weight and cutting sugar is helping reduce my pain levels tremendously! I  just eat real, whole foods, nothing artificial, no white flour or sugar, lots of water and green tea, and a handful of anti-inflammitory supplements morning and night.
Morning: Vit D, Vit C, Fish Oil, Tumeric, B complex, CoQ10.
Night: Magnesium Glycinate, Mag citrate/aspartate/maleate, Calcium citrate.

Other things that I've found helpful in alleviating some of my TOS pain- setting a few goals, volunteering for an organization weekly, helping others, continuing to challenge negative thinking and replace it with more positive and encouraging thoughts, getting involved in a suportive community/regular group meeting, attention to my relaxing/sitting posture, asking for what I need.

Things I am considering; injections of some sort into the back of my head/neck/upper trap on one side, and acupuncture. I looked into CBD oil, if it were not so expensive I'd give that a try. I am glad to be off all prescription meds currently, even ibuprophen. However, the pain ramps up to 'terrible' status 1-2x week, and it is moderately painful for several hours a few more days each week.

I do have some days virtually pain-free, but I'm still having enough pain that I'm wondering about going back to some type of medication. I need to be able to function and live and it's still hard for me to plan to do too much.
I sat for 1 hour for a college aptitude test recently, and half way through I was hurting and wondering how I could ever sit through a 2-3 hour class 2x week?! But I'm still signed up for Winter 2015...I won't know unless I try, right?!

So thats the current state of TOS in my life. I keep doing what I think may help, and stay open to any new ideas.

My fellow TOSers- Don't hang in there...and Gentle hugs~