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~

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.

**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.

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~