TOS...it's complicated.

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids - son and daughter, have the same condition and how it has affected our lives. I blogged my way through healing from rib resection, and my continuing journey...with TOS.

The Labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

Going through airport security with TOS

Recently, I traveled to visit my family, and bumped into some interesting situations because of my TOS. The first was going through airport security. There is a phone booth size machine you stand in the middle of...with your arms raised above your head, while a thing spins around you to scan you. When I saw what was comming I wondered how it was going to go over, since raising my arms above my head is something I avoid if I can help it. After dutifully removing my shoes and placing all my belongings on the conveyor belt I got in the line to be scanned. When it was my turn, I stepped in.

The security officer asked me to raise my arms, I did. Then she turned and started talking to another person, so I lowered my arms. She then pushed the button to scan me before turning back to look at me. I raised my arms while the thing was spinning, but she still barked at me-"you've got to keep your arms raised!" She scanned me again, it takes three seconds, but in the few seconds of standing there with my arms up I felt my arm throbbing when it was over. I could have requested a pat-down....ugh, no thanks. I could have, should have spoken up and told the security I cannot leave my arms raised for a prolonged period of time, but she was focused on other things (and a tad bit grumpy)and I just wanted it over with as quickly as possible. The second thing I ran into traveling was the airplane seat. Due to my height, the curve of the headrest pushed my head forward at a slight angle that gave me one option, for the entire plane trip, lean forward in my seat. I tried sitting back, slouching down, but I could feel my neck starting to cramp from the bad angle.

Next time-I am bringing a small inflatable pillow in my bag to put behind my neck so I can sit comfortably. That was a long flight-ugh. The concave design of seats is ridiculous if you ask me, they may suit tall people but not the average public.

I learned from a previous flight that putting even a small travel suitcase in the overhead compartment is not do-able for me. I bring essentials only in my lightweight handbag and check the rest of my things. It is worth it for this TOSer to not have to lug stuff around. So if you are travelling soon, hope my experiences can help you prepare to have a safe and more enjoyable trip 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!