30 things meme from invisibleillnessweek.com

Thankyou to invisibleillnessweek.com for making this available for those of us who deal with ongoing physical issues to participate in.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Thoracic Outlet Syndrome (TOS).

2. I was diagnosed with it in the year:2008?

3. But I've had symptoms since:1987

4. The biggest adjustment I’ve had to make is: Living with uncertainty; never knowing from one minute or one day to the next if symptoms may flare up.

5. Most people assume: That I am fine.

6. The hardest part about mornings are:Medication side effects-constipation, jitters, headaches, etc.

7. My favorite medical TV show is: Dr. OZ

8. A gadget I couldn’t live without is: Microwave lavender scented rice heat bag.

9. The hardest part about nights are:Sleeping comfortably.

10. Each day I take 5 pills and supplements.

11. Regarding alternative treatments I: believe in doing all you possibly can to help yourself, so I have tried many with mixed results.

12. If I had to choose between an invisible illness or visible I would choose:Invisible-though I'm not sure why.

13. Regarding working and career:I think about this daily-what could I possibly do for work??

14. People would be surprised to know:How much pain I put up with.

15. The hardest thing to accept about my new reality has been:Giving up on some dreams.

16. Something I never thought I could do with my illness that I did was:mow my lawn (riding mower).

17. The commercials about my illness:There aren't any.

18. Something I really miss doing since I was diagnosed is:Carrying a cute purse on my shoulder.

19. It was really hard to have to give up:My job doing home care for the elderly .

20. A new hobby I have taken up since my diagnosis is:Blogging.

21. If I could have one day of feeling normal again I would:Cry, because I wouldn't want it to end.

22. My illness has taught me:Resilience.

23. Want to know a secret? One thing people say that gets under my skin is:"Well, you LOOK good."

24. But I love it when people:Are respectful and gentle.

25. My favorite motto, scripture, quote that gets me through tough times is: "There's no use complainin', it won't change anything!" -Viv

26. When someone is diagnosed I’d like to tell them: Read all you can, network; educating yourself and understanding your condition is so helpful.

27. Something that has surprised me about living with an illness is:The limited options for help.

28. The nicest thing someone did for me when I wasn’t feeling well was:Feed me jello after resection surgery when I didn't want to move my arm.

29. I’m involved with Invisible Illness Week because:It affects my life and the lives of people I care about.

30. The fact that you read this list makes me feel:Glad that I could bring some awareness to TOS

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.