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~

Things that are difficult with TOS

Carrying a bag or purse-in fact, I do not ever sling any bag or purse on my shoulders anymore.

Backing up out of parking spots-wrenching neck around.

Pulling open doors-I use my foot alot to help get doors open.

Clothes shopping-pushing clothes on racks at shoulder level fatigues my arms super fast.

Planning-the unpredictability of symptom flareup.

Chopping, cutting, stirring when cooking.

Figuring out a good, ergonomic way to sit, (to avoid slouching) or what to sit on, that does not aggravate symptoms.

Traveling, going through xray scanner with arms up, and pulling a suitcase.

Waking the dog

Folding laundry

Vacuuming

Turning radio station in the car-arm extension-zappers.

Looking down to read...book, computer screen.

Wearing anything on my neck-scarves, necklaces, heavy clothing.

Pulling house windows up or down.

Scooping ice cream.

Fixing the back of my hair.

Pulling open doors.



*I'm sure my fellow TOSers can relate.

Gentle hugs to all of you for your courage in living with TOS.

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 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 9, 10 and 11

For the coffee quitting progress, day nine, I had one cup of half caff in the morning, some green tea during the day, and more water. Day 10, just green tea in the morning, a cup of black tea in the afternoon-but no coffee. Day eleven is the same, green tea only so far, and more water. Feeling tired, but I believe that will pass and I hope to be more clear, less headachey, and feel better overall. I'm trying out these organic green teas I found at my local health food store, also Stinging Nettle Tea, which I've read improves inflammation. So far, they all taste like grass water to me. I also drink Lipton citrus green tea, but hope to find a better choice that is organic, less chance of pesticides.

I've pretty much de-junked the cupboards of foods not on my tos diet, so when I get to feeling the itch to snack, I open the cupboard door and there are the nuts, almond butter, exekiel bread, unsweetened applesauce cups, dates, triscuits, almond milk and unsweetened whole grain cereals, raisins, natural dried fruit. Bananas and oranges on the counter.

When I open the fridge, I see apples-malic acid in apples is supposed to reduce inflammation. Also I see almond milk-I blend it fresh in my blender, but you can find it packaged with minimal additives and sugar.

Lots of veggies in there too. I found a mini-food processor at the thrift store and it has been just great to use that to chop stuff, saves my aching arms for sure!

I've continued the smoothies, but backed off from one quart to half that, or more if I want. The bloating is much improved. Pictured here is My TOS Army Green Smoothie: red grapes, spinach, flax, avocado, apple, pineapple juice.

Two nights ago supper was bakes chicken thighs, sweet potaotes and green beans-frozen. Last night supper was chopped salad, my own dressing made with olive oil, balsamic vinegar, raw honey, salt, pepper. Also salmon patties made with 4 eggs, 2 cans salmon, chopped onion and celery, fried in olive oil, salt n pepper. Delish.  

I also made a totally anti-inflammation legal fruit crisp. Ingredients: Mixed fruit/3 chopped apples, 1 can slices peaches(in real juice, drained), 1 cup mixed frozen berries-in a 8x8 baking pan. Topping: 3/4 c. gluten free organic oats ground into flour, 1 c unsweetened coconut shreds, 1 c chopped nuts-walnuts, pecans, 1/2 stick real butter. Drizzle fruit with raw honey or sprinkle coconut sugar, mix topping ingredients together, sprinkle topping over fruit, bake uncovered 350 30-45 min. Yum!

Breakfast has been tea, Ezekiel bread toast, or Ezekiel sprouted grain cereal, or whole wheat squares cereal with raw honey and unsweetened almond milk. That, or eggs and toast, usually a banana too.

I'm including a picture of the chocolate I indulge in every night. Two squares, ok, sometimes four, but it has to be at least 70% dark chocolate for it to be considered anti-inflammitory, according to The Diet for a Pain Free Life book.

Which is fine by me because dark chocolate is awesome.

 Today's smoothie is My TOS pineapple enzyme anti-inflam shake: Fresh or frozen pineapple-not canned. Almond milk, raw honey, ground flax, apple, banana, orange.  For those of you who do not have a high powered blender, I started making smoothies with an inexpensive 'Bullet' blender years ago, so it can be done. Investing in a good blender has been a smart choice though and I highly recommend it.  Thats the tos diet update. Gentle hugs~

 

My TOS Diet Plan ~ Pre-diet

The last few days I've been gearing up to start the diet.
I have used The Green Smoothies Diet for a couple years, love it.
I just finished reading The Diet for a Pain Free Life yesterday afternoon. Overall, good information. I don't agree with a couple things, like using sugar substitutes-I believe fake chemicals have to be irritating and inflammation causing, so I will be using raw honey instead.
I believe in the healing properties of raw honey. My husband had a bad burn and I applied raw honey because I read an article in Mother Earth News that honey heals burns--and the next day the burn was gone!

As I mentioned, I will be gleaning from these books, not necessarily following every word. I'm also trying a few tips I've gleaned off Pinterest for my anti pain & inflammation diet.
I'm throwing it all together to make My TOS Diet.

First order of business in putting together my diet plan was to decide if I should stop my morning habit of one cup of strong coffee. (That's my sister and her family on the mug). I posted this question to my TOS facebook friends, and with their comments in mind, (and my bowel dependency) I've decided to go with caffeinated green tea in the morning (for the bowels), and decaf/herbal tea in the afternoons, with decaf coffee as an occasional treat. I won't know if cutting coffee helps unless I try, right?!

I made a blender full of smoothie with pain-reducing fruits: blueberries, ground flax seed, spinach, raw honey, apple, orange, strawberries. It made 4 pints, I've had one per day, gearing up for my one quart per day smoothie...or one large salad. Gotta get those anti-inflammatory greens in! I prefer smoothies because all the chopping for salads can be flare-inducing.

Next thing was to go grocery shopping. Not a small task in the crummy Midwest snowy weather we're having here. But my husband drove, and pushed the cart, and I pushed on the back of my head...seriously.
I was having a nerve pain flare, up my neck into back of my head. So I walked around the store pushing on the back of my head feeling really odd.
We loaded up on anti-inflammatory foods: nuts, fresh, frozen, non-sugar/salt canned fruits and veggies, fish, dark chocolate, ginger.  We walked right by the aisle with the chips, pop, cookies.
We're going to use Ezekiel bread- sprouted whole grain super healthy (& expensive! I need to learn to make it). And yes, I said we. The hubs decided he wants to do this with me to see if he can loose a few pounds.

I read that Gin-soaked golden raisins help with inflammatory pain, so I got supplies for that experiment.
I guess they're supposed to soak for a week or two before you eat the recommended 8-10 raisins per day.

Tomorrow's the big first day. We just had cheeseburgers for lunch, a last hurrah.
I pointed out we can still have burgers on the anti-inflammation diet, salmon or turkey, on whole wheat.
Which reminds me, The Diet for a Pain Free Life cuts out beef and pork because it purports those meats cause inflammatory response, so we will be cutting that out. However, we will be eating all-natural, lean, local venison. A tweak in the diet that may not work for everyone.

One final thing today- I'm an average size lady, I was up twenty pounds a year ago and could stand to loose another 10-15, but I have zero aspirations of 'skinny' or single digit clothing sizes. Zero. This is not a weight-loss diet for me. Being healthy and free of pain is my only goal, and if I happen to loose a couple pounds, then ok, but if I don't loose weight yet feel less pain-well then hallelujah! (I will say, not carrying the 20 lbs I lost last year has been helpful.)

So I will try to report every other day on how things are going.
Interesting time to be starting this diet, being in the middle of another unexpected nerve pain flareup.

I love to eat cookies or chocolate to self-soothe when I'm really hurting.
I will have to eat grapes and walnuts instead. Drink more water.
I sure hope this diet helps.

Pain and the weather

Today it is quite humid in the Midwest, USA.
My hands are swollen, arms, neck throbbing the moment I got out of bed this morning.
I'm getting a slight bit of tingling in my hands.
The skies are grey, rain and thunderstorms are in the forecast.
I would love to understand how and why weather affects my symptoms.

Today makes me want to move to the North Pole.

http://www.intellicast.com/Health/AchesPains.aspx

Seat belt clip Review #2 - The LooPo - and more on proper seatbelt use for TOSers

Loopo clip review- http://www.seatbelttensionadjuster.com

My experience of the LooPo seat belt tension adjuster clip is- Thumbs up! It is really fantastically easy to use, clips on and off with no effort. Simply clip the LooPo onto the shoulder portion of the belt- up by where the belt retracts, clip your seat belt on, and then set the tension of the shoulder strap where it is comfortable for you.  You could easily use the same clip on any belt, easy on and off.
I found driving with this clip on my seat belt provided peace of mind.  I am still able to wear a shoulder strap, and there is no pull or tug on my arm or shoulder.
My daughters review of the LooPo is- "I like it!"
I just ordered more of therre I like them so much...one to take with me in case I ride in someone elses car, one to leave in each vehicle, and I will order more to give as gifts to people I know would find these helpful. I LOVE to find things that are helpful for TOSers!

**3/3/13 Update! I've been using the LooPo seat belt adjuster for several months now, and I have learned that if I do not slide the locking switch and slide the LooPo down the belt so it can retract, then my seatbelt flops around, gets shut in my car door, is hanging on my seat when I go to sit down. It is still the best seatbelt adjusting clip I've found, but not without its minor hassles.

~ ~ ~

On another note, I ran across several posts in an online forum regarading seatbelt exemption and tickets given for improper use. One lady in California got ticketed for putting the shoulder part of the belt behind her, even though her belt was fastened, she got ticketed anyway. Officer told her-"Belt must be fastened in the manner intended by the manufacturer."
This is why I got a note from my doctor-one for my glove box, one in my wallet.  I am also testing different seat belt adjusters so I can still wear a belt and be safe, but do it more comfortably, without causing a flare up when I drive. 
More on Michign belt law and How to wear your seatbelt properly.
This link states there should be no slack in the belt, unless you have a doctor note that states you need to adjust our belt due to a medical condition. You could also opt to request a note from your doctor stating you are exempt from wearing your belt due to TOS.
I personally am more comfortable continuing to wear a seatbelt but using some type of clip that provides a slight slack. The belt will still kick in and serve the intended purpose and it's better than not wearing one at all.
I am continuing to look for other types of seat belt clips and will give my reviews of them in future posts. For now, I am happy with the LooPo seat belt tension adjuster. Check it out, and above all, stay safe out there on your journey with TOS.

Seat Belt Clip Review #1 - Master Design waist belt clip

Seat belt clip Review-

This particular clip by Master Design is very hard to re-open once you snap it closed. I had to pry it open with a screwdriver. You would need to have a clip for each seatbelt you use. My experience with this particular clip was that once you slide the shoulder portion of the belt in the clip, the tension pulls up on the clip and twists the whole belt up so that the shoulder portion of the belt can slide out. My daughter, and fellow TOSer, gave me this review of the clip- "It still leaves the shoulder strap against my shoulder, still putting pressure on it, so it really does not help at all." 

I have a different kind of seat belt clip on order. It clips up where the belt retracts and holds a bit of slack in the shoulder portion.  I will post our review of that type of clip soon.
Above all, stay safe out there on your journey...with TOS.

TOS Driving Dillemma

My family has become so frustrated and concerned about my holding the seat belt away from me while I drive that they found our State's regulations online for seat belt exemptions and sent it to me.
I printed this information and took it with me to a recent doctor appointment. I asked nicely for a letter to exempt me from wearing the shoulder belt, or at least to be allowed to adapt it. I was given two letters, one for my car glove box and one to carry. Today I ordered these seat belt adjusters. There are several styles to choose from. I've read reviews on several styles about the clip slipping-more frustration, and who needs that? I will update you on how well these particular clips work. I will give one to my dear TOS daughter who struggles with the same seat belt issues-actually more since she is slightly more vertically challenged (love you;).

I encourage all my fellow TOSers to check on your State regulations regarding seat belt use and how you might adjust to make driving or riding in your vehicle easier for you to do. Moving ahead on our journey...with TOS. Stay safe!

Some days are just too much-Juggling 104

When you have TOS, there are lots of things to be mindful of in managing your condition so your flareups and pain are kept at the lowest level possible.
In previous articles here, I have discussed some of the things we can be aware of so we can adjust where needed.
Some days, however, it can all get to be too much.



We mind our posture, do our range of motion exercises, and tuck our chins.
We avoid lifting and carrying, we loosen our bra straps and stop carrying bags slung on our shoulder.
We drink our water, we read and learn all we can about TOS, we ask questions.
We learn our limits and try our darndest to stick to them.
We hate it but we must talk about our physical situation with our loved ones, in hopes they will be understanding and even supportive.
We warn-"Be careful hugging"-sometimes no hugging at all-too painful, though they do not really understand. How could they unless they walked a mile on our TOS shoes?
We massage, we heat, we ice, we apply creams and take pills.
And then tomorrow, we will start all of this, all over again.
It can be exhausting, and to top it all off then we hear from a well-meaning person-"Well gee, you don't look sick."
Sigh.
My fellow TOSer, I gently pat you on the back and say-I know.
This thing is trying, frustrating and difficult.
Maybe sometimes we need to drop all the stuff we think we need to juggle so we can reassess and just pick up the balls that are most important and let the other ones go.
We just do the best we can each day, and keep trying to juggle our way through on this journey with TOS.

Another post for the Ladies with TOS

Today I'd like to review a couple tips for the ladies dealing with TOS out there.

There are many ways we learn to adjust our lives and compensate for TOS pain.
Being aware of what triggers your TOS pain to escalate has been very important for myself, and I believe can be an aide for you too.

One tip to keep in mind is to not wear a purse or bag strap across your shoulder-even further impinging your already strained thoracic outlet.
It pains me still some days to not be able to sling a cute purse over my shoulder-but it simply is not worth the physical pain. Not at all.



My advice is-get a small, thin pocketbook for cach and cards. I even carry a couple pictures and a tea bag in mine.
Stick it in your pants pocket, or in a zippered or velcroed jacket pocket.
(You can stitch on a small piece of velcro to keep a pocket shut.)

Why do women feel the need to carry ALL that stuff around with them any way?!
It is so unnecesary, and SO freeing to have arms and shoulders free without a purse.

There is also the option of 'wristlet' style pocketbook that would hold a few more things, or fanny pack around your waist.

(Be careful to not fill coat pockets so they are heavy and make your coat hang heavy and put extra strain on your neck.)

Now to move on to one of the most common issues we TOS ladies face...the bra strap.



The v-back sports style bra can be the worst for TOS, with its angle inward toward the neck and typically do not have adjustable straps.
Take a look at your bra straps and see if they may be too tight, too narrow, digging in.
For years I have pushed my straps to the outer edge of my shoulders-away from my cervical rib area.
At the very least loose up those straps, but look for a sleep bra, or bra with wide cushioned straps. And go without whenever possible...unless the strain from large breasts pulls on your neck and shoulders.

Which leads me to reiterate a post from the past, about TOS ladies considering the idea of breast reduction to ease TOS symptoms, especialy if you are large chested. It's something to think about.

Stay tuned for more tips to come!

A reason for TOSers to stay out of trouble

Did you see this in the news?
http://www.thetelegraph.com/news/owen-61491-deputy-mudd.html

"The resisting arrest charge was filed after Owen allegedly refused to put his arms behind him in order to be handcuffed.
Owen claimed that he is unable to put his arms behind him because of a birth defect called "neurogenic thoracic outlet compression syndrome."
~ ~ ~

I can imagine the pain that would cause.
So fellow TOSers out there...be good.

The spoon theory

If you are my friend and wish to understand what I am dealing with living with TOS-Thoracic Outlet Syndrome, or if you deal with an ongoing pain condition yourself, please take the time to read The Spoon Theory.<--click the link)

She describes in detail what it's like to only have energy and pain tolerance for doing so many things in a day when you live with an ongoing pain condition...that even though "gee, you don't LOOK sick", the truth is if you stopped trying to keep going, you could look sick really fast because you sure feel like crap.

I post this because I have been SO frustrated recently by people's lack of understanding what I'm dealing with. I look fine, but I take pain meds to keep going and still feel crummy every day, it's a struggle.

I don't want to whine about every detail or be a 'downer' just to be taken seriously, but then I get so mad when people don't get how much I am struggling here.

My hands are swollen today. The light throb is always there in my neck, arms, shoulders. I am tired, and I am very ready to get rid of the cervical ribs and heal and get on with life.
(tears)
I just want my life back.