Saturday, May 29, 2010

Calgon Take Me Away!

I'm writing another blog carnival post for Patients For A Moment sponsored by Selena of Oh My Aches and Pains!  Thanks Selena for the invitation.  The more I write the more I like it and if I can help someone or make someone think, laugh or even smile it's worth it to me.

This time of year in Salem Oregon the temperature is in the 50's and the humidity is 50% or higher.  Not great weather for someone with arthritis and fibromyalgia.  I think about warm, dry weather like in San Diego - where we lived while Rich was in the Navy and Tucson - where I've traveled to twice in the past year by myself.

The first trip wasn't planned, like a vacation.  Amy had a high risk pregnancy, and I had to be there for emotional support.    Since it was last minute it seemed like I traveled and waited pretty much the whole day - I was exhausted for most of the time I was there.  A friend of mine told me I should've told the airline I have a disability.  You don't need any written proof, but I still felt a little uneasy saying I was disabled.  I guess for myself I need that "independence" of saying I can travel on my own, but it was hard.  In a motel room I do get extra pillows and if you ever get the chance to stay in the Radisson they have sleep number beds - heavenly.

For the second trip I STILL didn't tell them I had a disability.  Even if I know way ahead I'm going somewhere I'm not a "planner" but I think maybe next time I will plan ahead before I board an airplane.

I got some tips from About: Fibromyalgia & Chronic Fatigue that I'll be using next time.  The last two times I did request an aisle seat - easier to get in and out of.  But I think next time I'll request a bulkhead aisle seat which is the first one in coach.  I was lucky coming home - I got that front seat along with a woman with a walker.  I do travel with all my medications clearly labeled in a gallon zip lock bag, just in case.  WHEELS on the luggage LOL - don't have that.  

The good thing about traveling down to Arizona - I got to see my grandson born the second trip! Bad part - I ran my mouth and told my lawyer I was making that trip just in case I'd get a call about my disability hearing.  I did get a letter telling me I had one in January 2010.  When I had my hearing the judge pretty much said "well by the great letter your doctor wrote you would have gotten disability BUT the fact that you traveled by yourself questions your disability".  WHA??  Many disabled people travel with crutches and wheelchairs.

Here's hoping my next trip will be better planned, with someone (hopefully my husband), and for a happy reason - Christmas vacation!  Some other places I would love to travel: of course some tropical island like mentioned here *sigh*:

I would also like to go to the coastlines of California, Greece, Italy, Spain.  

Here are some links relating to traveling with a disability or just traveling in general:

a lot destinations, modes and even some stories from travelers themselves.

handling traveling in a wheelchair since 1985
of course I like the coast LOL and Crater Lake is one of my favorite spots to travel to

Any suggestions on traveling on your own and disabled would love to hear from you!


Selena said...

It's hard, but I have come to accept that I need help, especially in the airport. So I ask for a wheelchair ... and get to bypass the long lines at the security screening! :-)

Kathy said...

Great post. I have fibromyalgia too. Next time I travel by plane, I may request "chair service" esp. as Selena says you can bypass the long lines @ security....which will thrill my husband no end.

Ichi said...

I never thought about asking for a chair, I just suffer in silence... thanks so much for this post!! I have found that a lot of doctors don't really believe in CFS and they seem to think I was making it up, but the book "Beat Sugar Addiction Now!" is written by a doctor and he knows so much about it. I feel like I learned a lot about my own body just by reading the section on CFS, and it made me annoyed that no one had told me this before. I started reading the book because I thought it was a diet book and would maybe help me lose weight, and if I wasn't carrying around so much weight maybe I would feel better overall and be less achy. But it's actually a whole part on CFS is in it and I learned a lot about my hypothalamus that I never knew before. The information is good and smart science but not too hard to understand. You need to find help if you have what I have-so much pain it hurts to pull my shirt over my head or bend down to tie my shoes. I had to start wearing ugly crocs just because they were easier to put on and more comfortable, and that is not who I wanted to be-a fat person in unstylish shoes who has trouble getting in and out of the car. I feel like if I can find a doctor who will help me and I can do what it says in this book, I will get a lot better. It is written very convincingly and you can tell he knows what he's talking about. Plus he has a list to help you find doctors that treat CFS and I am ready to get treated and stop feeling like my nerves are exposed every time I move. Here's the website for Dr. Jacob Teitelbaum:

sauna said...

Good one! I am glad that I came across this post. Thank you so much.