[SnowWhyte]

Hi everybody-

I am in need your help, if you don't mind. I have CRPS in my left foot, left leg, and right leg. I'm about to fly to see my best friend for a week in TX, so I have a couple of long flights ahead. Now other than requesting help from the airline to push me to the gates, and priority seating, and such (already set up), I'm just wondering if anyone has any unique suggestions to make the flights a bit easier. Any tips would be HUGELY appreciated! As this is only my second time flying since I was six, and my first time traveling at all with the RSD"Beast" on my back, I need all the help I can get.

Thank you all so much!

[daniella]

I have traveled by airplane so many times now with rsd. It is a long and draining day but I will share some things that have helped me. I get a wheel chair to and from the gate. They will drop you off even just near if you want to get something to eat. Pre board and wait to get off till everyone else does. People may knock you or even step on you otherwise. If you can get a seat with the extra leg room that is good. Bring extra sweater. You know next time too I travel I am going to get a small blanket to place over my legs. The last flight I took from FL to CA was so cold a man let me use his jacket for my legs. Now I am not a fan of using strangers things cause of germs but my legs were in so much pain from the cold it was the lesser of two evils. Get up and walk around during the flight. Just go to the bathroom even. Plenty of water. I used to get an aisle seat but last time got a window and I think I liked that better. If you get a window and need to use the restroom tell a person you have a bad leg and can't climb over them. You know how some don't want to get up.
You will be fine. The anxiety of getting through the day is hard but you will do it. Bring some magazines,sometimes they have wifi,or tvs.

[gabbycakes]

Originally Posted by SnowWhyte

Hi everybody-

I am in need your help, if you don't mind. I have CRPS in my left foot, left leg, and right leg. I'm about to fly to see my best friend for a week in TX, so I have a couple of long flights ahead. Now other than requesting help from the airline to push me to the gates, and priority seating, and such (already set up), I'm just wondering if anyone has any unique suggestions to make the flights a bit easier. Any tips would be HUGELY appreciated! As this is only my second time flying since I was six, and my first time traveling at all with the RSD"Beast" on my back, I need all the help I can get.

Thank you all so much!

Snowwhyte,

I'm not a good flyer to begin with but I have found the airlines to be very accomodating. My RSD is upper extremety so I don't need a wheelchair but I'm allowed on first, I always ask for an extra blanket, and I ask my doctor for something for the anxiety this way I don't stress. I really don't like to fly RSD or not, it's just not my thing. I have flown all over the place but still don't like it. Just don't be afraid to ask fo help, you'll be fine. Think of all the fun you will have with your friend.

Have a great flight and have a great time with your friend.

Gabbycakes

[bobinjeffmo]

You clearly need the extra help and there's nothing easy about flying these days that's for sure. My solution is to fly first class. Now before you think I've lost my mind, sit down and do some simple math with me.

Add on the cost for luggage. This is anywhere from $100 or more round trip. Beverages while airborne run $3 and up per drink and the list just keeps going on and on. Instead look at all the extras you get for free when you upgrade to the front of the plane. First you get a whole lot more comfort. You won't be stuffed in like a sardine. Since most planes actually pay for the cost of the flight/fuel/staff by filling up the coach section, the profit most airlines make is in first class, so they do everything to make sure these customers are happy and come back. I look at it this way. Am I worth $20 to $50 per hour I'm in the air for all this extra care and service? For me the gimp, the answer is yes. I'd rather travel less but be a whole lot more comfortable even though it does cost more. By purchasing your tickets far enough in advance, you might find it more affordable than you think. Happy flying. Bob.

Originally Posted by SnowWhyte

Hi everybody-

I am in need your help, if you don't mind. I have CRPS in my left foot, left leg, and right leg. I'm about to fly to see my best friend for a week in TX, so I have a couple of long flights ahead. Now other than requesting help from the airline to push me to the gates, and priority seating, and such (already set up), I'm just wondering if anyone has any unique suggestions to make the flights a bit easier. Any tips would be HUGELY appreciated! As this is only my second time flying since I was six, and my first time traveling at all with the RSD"Beast" on my back, I need all the help I can get.

Thank you all so much!

[Lisa in Ohio]

I have traveled several times with this disease and it was not much fun. I could not get help with my carry-on luggage so the next time I checked it and paid the extra fees and that helped some. I also wear slip on shoes so it is easy to get through security. I also dress in layers and in very comfortable clothing that won't pinch or bind. If I can select my seat I do that so I can pick one that protects my left side from the person sitting beside me. I have read several good ideas here that I am going to try the next time. Have a great trip, Lisa

[debbiehub]

I have RSD in my left foot/leg as well. I get a right aisle seat so I can sort of stick my leg in the aisle a bit...Last time I was able to elevate it with my carryon...also- lots of xanax!

Good luck

Debbie

[SnowWhyte]

Originally Posted by debbiehub

I have RSD in my left foot/leg as well. I get a right aisle seat so I can sort of stick my leg in the aisle a bit...Last time I was able to elevate it with my carryon...also- lots of xanax!

Good luck

Debbie

Debbie,

Thanks for your tips. I chuckled at your last two comments because I have also put lots of thought into how I may have to use my carry-on as a make-shift ottoman.

However, I'm hoping that I won't have to do that. I'm flying Southwest (fyi for all- at least as far as planning goes, they were fantastic! The lady I spoke with couldn't have been more accommodating and patient with me!) Anyway, they don't have assigned seating, and I will get boarded first, in the front of the plane where there is extra leg room.

What's more, if the flight isn't full, I get "first dibs" on an extra seat- in which case with a lift of the armrest, I have my own personal couch, of sorts, (or love-seat?) on which I can simply sit sideways, and with a couple extra pillows I'll be set. (I do the same at restaurants- sit at a booth on the side that has the wall to my right, and pivot to the left to prop my foot up). So that's what I'm really hoping for- an extra seat would make all the difference as to the flight experience. But as the saying goes: "Hope for the best, but prepare for the worst"

[fmichael]

Dear SnowWhyte -

I've got one further thought on the travel score, and it's uncomfortable.

As we all know, the TSA is officially into manipulating every contour of your body, in the event that your x-ray scatter-scan is at all ambiguous. In fact, as I now look at the TSA guidelines, no one has the right to avoid a pat down in favor of the x-ray scatter scan in the first place!

(Of course, I have repeatedly heard TSA representatives advises that the best way to avoid ambiguous x-ray scans is to in turn avoid wearing "bulky, loose fitting clothing," what most people with RSD would be most comfortable wearing in the first place!)

My first had been to try and get a letter from your pain doctor explaining what you've got, how it makes you "sensitive" to even the lightest touch, and suggesting that if they believe a pat-down to be in order, it would be MEDICAL NECESSITY to do a strip search in a private room, as painful as it may be for you to get dressed and undressed. Unfortunately, the TSA's policy statement doesn't appear to support even the "right" to a strip search! Check it out:

All passengers have important rights during a pat-down. You have the right to request the pat-down be conducted in a private room and you have the right to have the pat-down witnessed by a person of your choice. All pat-downs are only conducted by same-gender officers. The officer will explain the pat-down process before and during the pat-down. If you have a medical device, please inform the officer.

http://www.tsa.gov/travelers/pat_downs.shtm

Indeed, there a wholly separate TSA document called "Medical Conditions and Special Situations - Travelers with Disabilities and Medical Conditions," and it's not terribly comforting. http://www.tsa.gov/travelers/airtrav...rial_1986.shtm For instance, here's the sub-section on persons with "Hidden Disabilities":

* Persons with a hidden disability can, if they choose, advise Security Officers that they have a hidden disability and may need some assistance, or need to move a bit slower than others.

* Family members or traveling companions can advise Security Officers when they are traveling with someone who has a hidden disability, which may cause that person to move a little slower, become agitated easily and/or need additional assistance.

* Family members or traveling companions can offer suggestions to Security Officers on the best way to approach and deal with the person with a hidden disability, especially when it is necessary to touch the person during a pat-down inspection.

* Family member or traveling companions can stay with the person during a public or private screening; however, they may be required to be rescreened if they provide assistance to the person.

* Notify the Security Officer if you need to sit down before and/or during the screening process.

http://www.tsa.gov/travelers/airtrav...rial_1374.shtm

On the other hand, the document offers helpful information regarding things like extra carryons for medical equipment and getting medications through security. I would urge you to go through it carefully.

That said, I suppose it couldn't hurt to have a letter from your doctor pleading for disrobing as an alternative to a "gentle frisk" carried out in private. But if the TSA lack the facilities and/or training for private same-sex visual inspections in the buff, there may not be a lot of options.

(Someone please tell me how I am misreading this document.)

In any event, between all of that and often having to wait 15 minutes for an airport wheelchair, I would certainly add another hour to the time you are giving yourself to arrive at your local airport on the way out and check in on the way back.

Please understand that I don't meant to alarm you, and may well be blowing this out of proportion. I wish you only the best in your travels.

Mike


ps Just came across the transportation blog of the Washington Post, "Dr. Gridlock," for November 24th, in the follow up to an unpleasant incident at an airport screening station, where "a bladder cancer survivor and had a urostomy bag under his clothing." http://voices.washingtonpost.com/dr-..._pat-down.html Following an apology from the TSA, the upshot of the situation appeared to be as follows:

The TSA said passengers with disabilities can contact the TSA to coordinate their screening before arriving at the airport.

That said, I couldn't get a phone number for TSA at my local airport, and when I went on the TSA webpage http://www.tsa.gov/ and hit the "Contact Us" tab at the top of the page, it didn't exactly read like read like a phone book. The best bet may be in contacting your local airport administration during M - F business hours, and seeing if they're able to patch you through to the TSA.

[Lisa in Ohio]

Oh Finz, I know you didn't mean to make me giggle, but I did. I figure if I had to do a strip down search, the TSA officer would be scarred for life. Now that I have this SCS, my x ray is going to be scary looking anyhow. I always seem to have problems at screening anyhow, you know, the typical grandma in bi-focals. Even with just an arm brace, they held me up so long that I was the last person on the plane, and then there was somebody else in my seat!! I will probably have to arrive at the airport a day in advance just in order to be screened the next time I fly.

[daniella]

Originally Posted by fmichael

Dear SnowWhyte -

I've got one further thought on the travel score, and it's uncomfortable.

As we all know, the TSA is officially into manipulating every contour of your body, in the event that your x-ray scatter-scan is at all ambiguous. In fact, as I now look at the TSA guidelines, no one has the right to avoid a pat down in favor of the x-ray scatter scan in the first place!

(Of course, I have repeatedly heard TSA representatives advises that the best way to avoid ambiguous x-ray scans is to in turn avoid wearing "bulky, loose fitting clothing," what most people with RSD would be most comfortable wearing in the first place!)

My first had been to try and get a letter from your pain doctor explaining what you've got, how it makes you "sensitive" to even the lightest touch, and suggesting that if they believe a pat-down to be in order, it would be MEDICAL NECESSITY to do a strip search in a private room, as painful as it may be for you to get dressed and undressed. Unfortunately, the TSA's policy statement doesn't appear to support even the "right" to a strip search! Check it out:

All passengers have important rights during a pat-down. You have the right to request the pat-down be conducted in a private room and you have the right to have the pat-down witnessed by a person of your choice. All pat-downs are only conducted by same-gender officers. The officer will explain the pat-down process before and during the pat-down. If you have a medical device, please inform the officer.

http://www.tsa.gov/travelers/pat_downs.shtm

Indeed, there a wholly separate TSA document called "Medical Conditions and Special Situations - Travelers with Disabilities and Medical Conditions," and it's not terribly comforting. http://www.tsa.gov/travelers/airtrav...rial_1986.shtm For instance, here's the sub-section on persons with "Hidden Disabilities":

* Persons with a hidden disability can, if they choose, advise Security Officers that they have a hidden disability and may need some assistance, or need to move a bit slower than others.

* Family members or traveling companions can advise Security Officers when they are traveling with someone who has a hidden disability, which may cause that person to move a little slower, become agitated easily and/or need additional assistance.

* Family members or traveling companions can offer suggestions to Security Officers on the best way to approach and deal with the person with a hidden disability, especially when it is necessary to touch the person during a pat-down inspection.

* Family member or traveling companions can stay with the person during a public or private screening; however, they may be required to be rescreened if they provide assistance to the person.

* Notify the Security Officer if you need to sit down before and/or during the screening process.

http://www.tsa.gov/travelers/airtrav...rial_1374.shtm

On the other hand, the document offers helpful information regarding things like extra carryons for medical equipment and getting medications through security. I would urge you to go through it carefully.

That said, I suppose it couldn't hurt to have a letter from your doctor pleading for disrobing as an alternative to a "gentle frisk" carried out in private. But if the TSA lack the facilities and/or training for private same-sex visual inspections in the buff, there may not be a lot of options.

(Someone please tell me how I am misreading this document.)

In any event, between all of that and often having to wait 15 minutes for an airport wheelchair, I would certainly add another hour to the time you are giving yourself to arrive at your local airport on the way out and check in on the way back.

Please understand that I don't meant to alarm you, and may well be blowing this out of proportion. I wish you only the best in your travels.

Mike


ps Just came across the transportation blog of the Washington Post, "Dr. Gridlock," for November 24th, in the follow up to an unpleasant incident at an airport screening station, where "a bladder cancer survivor and had a urostomy bag under his clothing." http://voices.washingtonpost.com/dr-..._pat-down.html Following an apology from the TSA, the upshot of the situation appeared to be as follows:

The TSA said passengers with disabilities can contact the TSA to coordinate their screening before arriving at the airport.

That said, I couldn't get a phone number for TSA at my local airport, and when I went on the TSA webpage http://www.tsa.gov/ and hit the "Contact Us" tab at the top of the page, it didn't exactly read like read like a phone book. The best bet may be in contacting your local airport administration during M - F business hours, and seeing if they're able to patch you through to the TSA.

I have flown a few times since the security change. I never got touched or did I see others. When you go through the airport in a wheel chair with the staff member of the airline they seem to be helpful and understanding. If you are wearing like a jacket etc they just have you take it off and put it in the bin.
To the OP you will be fine. Your anxiety before hand which is normal and I felt especially in the start of traveling is worse then the actual will be. Try to focus on having fun on your trip