Showing posts with label manage. Show all posts
Showing posts with label manage. Show all posts

Monday, September 10, 2012

A Day in MY Life With Thoracic Outlet Syndrome


It is 6:48 am. My dog is staring up at me over the edge of the bed, whining and doing her potty dance. I roll to get up off my chiropractic mattress and realize I should not have slept with that pillow last night.

My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out. I attempt a 'systems check', turning my head slowly, left and then right, and back to the left, bending my arm and rotating slowly at the shoulder.

Feeling pretty good this morning, I think to myself.

Mind you, this is compaired to having constant ear, neck, jaw, back, and arm throbbing for several years due to Thoracic Outlet Syndrome before my right first rib was surgically removed through my armpit. Yes, compared to that- I think I'm feeling pretty good this morning.

While the dog does her morning business outside, I get the coffee started; half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I recently decided I had no choice but to chop off my long hair. The weight of it all was just too much for my weak and grumpy neck muscles that have to compensate postop from having been partially removed.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not fully rebound postop. Turns out that having a large mans hand in that small space stretching out your nerves complicates things a bit.
Did I get it on? I wonder.  I have to actually watch myself smear it on to be sure.

Before I head out the door I take a deep breath and wash down some pills, stuff my cell phone in one pocket, my little pocketbook and keys in the other pocket, and head out the door. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really; cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and I cannot bear that. So I compensate, and pray as I drive with my seatbelt sortof on that God might protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor-per state law- stating that I need to adjust my seat belt for medical reasons, and have begun using a belt clip that holds the belt away from my neck.)

I get a text from my daughter, who is away at college. She wants to followup with the surgeon soon because she is having recurring symptoms since her resection in 2005. Both our kids also have Thoracic Outlet Syndrome due to cervical ribs (an extra set of ribs in the neck) and have had a rib removed through their armpits too. We have comiserated about our numb armpits. I sigh as I read her text, breathe a little prayer and make a note to call the doctor when I get back home.

After my apointment, I stop at the grocery store. I've gotten used to parking far away from the store, out where I can pull through two parking spaces so I don't have to wrench my neck around to look behind me to back out of a parking space. A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non-resected TOS side prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk. I know from experience that the weight of several pounds of milk hanging from my arm would definitely pull down on my neck and shoulder, squish nerve,s and set off that darn chain reaction that does not stop once it starts up. It also makes my hand turn a nice shade of blue; and blue doesn't match my outfit today -so I'll just grab a cart.

I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience has taught me that I am always just one too tight hug away from a flare up of nerve pain misery.

The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. My physical therapist would remind me that awareness is key in managing my symptoms.  I must always be aware of what my body is telling me. Listen. Pay attention. I have to do regular mental systems checks. Is my posture off? Is my head turned slightly to one side?  It is definitely a juggling act to live with TOS.

Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.

The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing by letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring? What adjustments will need to be made?

Whatever it brings, I'm just thankful I've gotten this far along on the journey, even with TOS.

Wednesday, August 22, 2012

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




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.

Wednesday, July 18, 2012

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!

Saturday, December 17, 2011

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.