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~

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~

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~

Book Review - Explain Pain - Physical Therapist Recommended

Explain Pain, David Butler, G. Lorimer Moseley

I read this book twice, once to get through it, the second time to jot down notes of what resonated with me. I have six pages of notes. I needed to read this book. I was encouraged from reading it that change is possible, even with TOS pain issues.
Here are a  few notes I jotted from the book...(this book was loaned to me-it is a bit pricey).

Pg. 111 "Understand as much as you can about what causes your pain, not just what to do about it. Knowledge is the great pain liberator."

Pg.26  "All pain experiences are a normal response to what your brain thinks is a threat. The amount of pain you feel does not necessarily relate to the amount of tissue damage."

Pg. 11  "When pain persists and feels like it's ruining your life, it is difficult to see how it can be serving any useful purpose. But even when pain is chronic and nasty, it hurts because the brain thinks you are threatened and in danger-the trick is finding out why the brain has come to this conclusion."

  I highly recommend this book to my fellow TOSers. It covers alot of information and has been quite helpful to me. If you can swing the digital kindle version, or even just read the online free sample for starters. There are also youtube videos available by the authors that are informative.

TOS Diet days 28, 29, 30-Final

I got a copy of my medical records from when I had rib resection last week. 

The first thing I noted was that I was, at the time of surgery-almost five years ago, 37 lbs lighter than I am now.

I began the TOS Diet journey using a few different materials as inspiration. One is the book Diet for a Pain Free Life.

The main point of the book is excess weight leads to increased inflammation and thereby increased pain.

There are recommendations in the book I disagree with, such as: using sugar substitutes, moderate soy consumption. I do agree that excess weight may be a contributing factor, one of many, in my own pain cycle.

The smoothies will always be part of my diet. Gas and bloating can be an issue at times, but the absorbable nutrients can't be beat.

Much of my struggle with My TOS Diet was regarding coffee consumption.  You will probably not be surprised to know I am back to my daily one large cup of caffeinated coffee. 

I continue to cut out refined foods, sugar, white carbs. 

Having said all that, it seems to me nerve pain does not care what I eat. I have low pain days and bad pain flareup days, even when I've been virtually perfect in my anti-inflammatory diet.

And for me, when pain gets reeeeally bad, I want to self-soothe with food so much! A cookie or three, a vanilla shake, some dark chocolate. After all, I deserve some happiness in life with all I have to endure-right?!

So I apologize if my TOS Diet wrap up is a bit of a let-down. I'm disappointed too.  I was hoping for more of a wondrous change. I still think diet does play a part in pain issues, and I'll keep at it as best I can.

Gentle hugs to all my fellow TOSers~

TOS Diet days 22, 23, 24, 25, 26, 27

I consider My TOS Diet to be one piece of the puzzle in trying to control my TOS pain symptoms.
Some of the other pieces are: posture, managing stress, staying active, supplements, attitude and thought patterns, and all the small daily choices to adpat my life around TOS.
SO far on My TOS Diet, I'm finding that cutting out refined food, junk, carbs, and simply replacing them with whole foods to be somewhat helpful in reducing my pain issues. I continue to struggle with missing the upper affect from the serotonin dump I get when I eat a donut or something sugary. I have noticed less arm achiness, and overall feeling a little more stable, not swinging from one carb load to the next.

Breakfasts have consisted of Buckwheat pancakes, real butter, real syrup, banana...or Ezekiel Raisin toast with butter, Whole grain cereal with nut milk, eggs and whole grain toast, eggs and cooked chopped spinach with olive oil, coconut flavored green tea, plain organic tea, decaf black tea, and the last few mornings-decaf coffee...this morning-half caff coffee. Am I sliding back into coffee consumption? I have in the past, so possibly. I will try to hold out. I do feel less acidic without it, but my inner coffee addict gets just so pissy without that one cup-o-joe.

Lunch has been alot of leftovers, a veggie subway sandwich one day, but mostly leftovers.

Snacks lately have been: banana, applesauce cups/unsweetened, cucumber slices with hummus, mozzarella cheese stick, toast, grapes, mini oranges, nuts. I've let myself eat whenever I want as long as the food is whole, and not processed junk. So no weight loss, in fact I've gained a couple pounds the last two weeks. But then it is terribly cold and snowy and  hard to do very much besides try to stay warm... and eat.

Dinner has been beef meatloaf without the bread crumbs, brown rice with butter and veggies... Creamed cauliflower with ground beef and mixed veg(no corn) over brown rice or whole grain pasta topped with parm cheese...baked chicken, sweet potaoes, green beans...chicken stirfry-no msg, Bragg liquid aminoes instead of soy sauce...and last night we got regular old pizza because I needed a break from trying to figure out what to cook. I only had one piece, with a vanilla shake I made: vanilla nut milk, ice, blend.

As I near the one month mark, I've decided to continue to keep junk and refined foods and sugars out of my diet as much as possible, and continue sticking with whole foods.
I have a half full jar of Gin-soaked raisins on my counter I have no idea what to do with because I cannot bring myself to gag them down anymore.
The smoothies are always on my go-to list for something filing and healthy. I made a carrot cake smoothie that was delish the other day: carrots, apple, pineapple, walnuts, coconut shreds, nutmilk, cinnamon, nutmeg to taste, blend and drink-tasted like carrot cake!

One more TOS Diet update to go...gentle hugs~

TOS Diet days 19, 20, 21

It's been three weeks!
The cravings are hitting full-force.
I'm stuffing banana cookies in my face but they are not meeting the need.
I'm just being honest.

I have stuck to eating clean...until yesterday.
We had Pasties...I really needed a break from cooking, so we threw caution to the wind with these Michigan meal-in-a-pie turnovers smothered in gravy.

I have to be honest here and say that I am in the process of seeking another opinion about my TOS symptoms that have returned. I've had pain more often than not lately, and when I'm in pain I get to feeling depressive and seriously desire to medicate with foods that are serotonin (the feel good hormone) enhancers...carbs.  I even spent some time looking up healthy whole grain donut recipes, thinking that might help me to stay on the wagon, having a healthy substitute.
So far, it's just making me really want an apple fritter and cup of coffee, and feel sad because I can't.

I stopped the gin soaked golden raisins, choking them down just added insult to injury every day.

Every time I feel tempted to quit, I think of my fellow TOSers and decide I can hang in there a while longer.
I do think cutting the sugar and refined stuff may be helping, its just so depressing I'm not sure if it's do-able for the long haul?

That's the scoop. Gentle hugs ~

TOS Diet days 16, 17, 18

Not an hour after I posted my last update, my arms were aching, neck hurt - and here I just told you all I was feeling pretty good.  Then my husband walked by and took my picture-- Busted.

Just look at how I am sitting, horrible! I always start out propped up, sitting straight, but before long this is how I always wind up, trying to get at eye level with the laptop.

One thing is for sure, all the diet in the world will not remedy TOS pain made worse by poor posture and bad ergonomics. 

 I've tried a few things lately to get things up at eye level, and be gentle on the arms. Sitting like that usually last about 10 minutes before I desperately want to slouch again. 

I have been craving carbs like crazy, so I made these banana cookies and was really happy with them. They will be a staple around here now, maybe with a little peanut butter added.

My kids came home with Jets pizza the other night and I had to go lock myself in the bedroom to keep from getting into it. I tried making healthier pizza for lunch using Ezekiel bread-toasted, for the crust, sauce, toppings, nuked for 30 sec-voila! Pizza, right?! Wrong. It tasted like sprouted bread with pizza toppings. Eh.

I have been a good little doobie and not eaten anything that promotes inflammation, no junk, no coffee- sniff. And I've been feeling pretty good. Achy, but the strange Midwest weather is to blame for that.  As long as I can refrain from picking up my grand kids so much (so hard not to) or slouching when I sit, hopefully the pain level will stay calm.

But then with TOS, I never know from one minute to the next how I will be feeling.

Gentle hugs~

My TOS Diet days 12, 13, 14, 15

It is time for a TOS symptom update.

When I began this diet, I was having a lot of TOS pain, so much that my doctor prescribed Gabapentin to see if it would help. I also got a very expensive tube of compounded cream to rub on. 

That was fifteen days ago. I've not started the prescription yet, and the cream is use as needed. Because it is so expensive, I've only used it once so far.

I have noticed that I have not had the usual headaches, and the light throbbing I've become accustomed to in my neck, and arms is very reduced...I barely notice it at all. I've only needed ibuprofen twice in the last few days-another good sign. I think possibly cutting out sugar and refined foods, coffee, and eating only foods considered anti-inflammatory is helping, enough that I am motivated to continue walking by my favorite donuts at the grocery store...and that is saying a lot.

Most mornings I have two cups of green tea, sprouted grain toast, eggs, or whole grain cereal and almond milk, and a glass of water.

Lunch is usually a smoothie, lots of fruit, greens, ground flax. More decaf tea in the afternoon.

Dinner has been challenging, making food that is tasty and anti inflammatory.

Recently we've had:* baked chicken with pesto and cheese on top, brown rice, green beans.

*Turkey meatloaf, spinach tomato salad, sweet potatoes.  

I made banana icecream in the blender couple nights ago, so yummy..the grand kids loved it.

I'm also hanging in there with the gin soaked golden raisins, eight of them every night, on a teaspoon. I take them all at once, chew fast, gag, drink water. My tongue feels tingly after...I'm giving it another week. If the pain gets worse when I stop taking them, I guess then I'll know it was helping.

Today's lunch, pizza on sprouted grain tortilla, two of them. 

That's the diet scoop on day 15.

Gentle hugs~