I really need some HELP/advice.. (traveling)
 

man i am freaking out!!! i promised my best friend i would go to his wedding in FL in May... which is fine... except for 2 big things... i hate flying ( but xanax will make me not care) and i am so worried what do i do if i have a flare when i am down there... i want to believe i wont let MS ruin this for me... but it has now moved from the back of my mind to all i am thinking about with this dang trip... grrr....

any advice would help.. and i mean anything even if it is eat some fried chicken and shut up.. ;)

i know lots of ppl with MS travel but how do you all cope with it.. this will be my first trip after getting DXed that is more then a few hrs from home...

I refuse to let the 'what ifs' ruin my life. I got my dx in '99 and my neurologist said I had had it for about about 5 years. In that time I had taken a week long tour of the Grand Canyon. That gave me so much comfort to know that I did it when I had MS. Would I have gone if I had know about the MS? My husband probably wouldn't have let me!!!!! But we didn't know and had a good time.

My son in law is in the Guard and was shipping out to Iraq about 4 years ago. I am the closest thing he has to a Mom and he wanted me and his wife to be with them during their 3 day leave. Now how could I say no to that. It meant me getting my butt of the couch in southern Indiana and flying all the way to Philadelphia, do a lot of sight seeing and being absolutely exhausted but pleased and proud for my daughter and son in law at the end. And yes, I crashed when I got home but it was sure well worth it.

I see the glass half full while my DH sees it half empty. So I see this time with MS as an opportunity that I might not have had. I was able to take a week to go to Lexington, Ky to be with my other daughter when both my grandaughters were born. So for the second one I was the chief caregiver of the oldest one. I was VERY glad to get home but I also was very glad that God gave me the opportunity to go. As an RN in a very busy hsopital I know I never would have been able to do that without MS.

So go eat your fried chicken and start planning your trip!!!!

Oh, forgot to add stuff. Plan, plan, plan. If you need to rent a scooter, do so. Some people rent it at the destination so they don't have to bother with it on the plane. I took along my wheel chair and my daughter pushed me but that was exhausting for her. I'm sure most airports have assistacne for you, free of charge. You can make arrangements for that ahead of time so they are waiting for you. Get up and walk around on the plane if you can. If staying at a hotel get a goood bed. Take care of your self, eat well. I'm sure some of our seasoned travelers will chime in a little more.

When I'm anxious about something, I play the "What If" game. I imagine everything that could possibly go wrong, then figure out a plan for each scenario.

You might want to locate a pharmacy just in case you need some meds. Talk to your doc about how to obtain IVSM just in case you flare.

Make yourself a packing list in advance, then add to it every time you think of something else.

• Meds
• Underwear
• Toothbrush
• Socks
• Tie

etc.

The more prepared you are, the easier it will be on you.

Good luck and have fun!

i know i should not let MS ruin my trip.. boy at this moment it is though.. i feel fine. i can move around ok.. but i do play the "what if" game alot... and i hate it.. my neuro is guessing i have had this since 1997-1999 (her best guess) so i was doing all kinds of stuff before i got a Dx ... i think it is just knowing now... is what is messing with me..




twink haha i pack like a man... underwear and a few shirts and meds.. everything else i buy when i get to where i am going then if i like it i ship it back to myself. kind of odd i know but if i cant fit it in a back pack its not coming with me.. and now with the way security is at the airports.. all i want to bring is clothes/meds.. i can pick up a toothbrush/deodorant. ect when i get there at a walmart or a $1 store or something..



ya know i wonder if my neuro would write me a RX for IVSM ... could i get it filled down there or would i have to be in my home state... and if i don't need it i can just toss it..

i keep thinking well if it happens here or when i am away from home the treatment is the same... IVSM... cuz really what else can they do for us.. makes me feel a little betting knowing that...

And what if you were hit by a bus on the way to the KFC? :D

I am with you on the "what if" game unfortunately so I can't be of much help there. Especially since I am on day 2.5 of 5 with the IVSM so everything is negative today.

Buy something ridiculous that you know you have absolutely no use for but you just have to have it. Ship it to yourself from FL the day you leave and it will be like Christmas when you get home.

Go have a good time. And keep your neuro on standby. It also helps to have the number of the local pharmacy in FL in case they do need to call you in something. Besides they say Vit D is the new reason/ cure all. Go get some sun, wash it down with something tropical and fruity and bring us poor schmucks some pictures!

Be a good scout, and be prepared. Since you are in PA, you are used to the cooler weather, and FLA tends to be warmer. Make sure you have cool scarves, and light weight clothes. A good hat is worth its weight in gold. Take some comfy shoes, and make sure you take steps to save energy. Rest when you can, and relax when you cant. When I am out in the FLA sun, I pack a light weight cooler bag, they make them out of fabric now, instead of that hard plastic. I pack a frozen wash cloth that is quite damp, and some frozen drinks. By the time I get too warm, I have something cold to drink. I have a nice icy wash cloth to drape around my neck or just wash my face.

I hope you go, and have a great time! just think how much it will boost your self esteem to get out there, and put your dancing shoes back on!

Just a cotton pickin' minute here! For the love of Pete! http://www.pic4ever.com/images/snapoutofit.gif

Punk, it's just a few days out of your entire life! Just plan on it and plan on having a great time!

What if you have a terrific trip with no major issues at all?

What if your friends are just thrilled that you came?

What if you make the trip and realize that you really are capable of staying alive?

What if you get down there and just want to hang for a few extra days?

What if you just go expecting the best of everything and keep a positive, proactive attitude if you run into a dilemma?

Geez, the internet is everywhere, if you hit a snag whether medical or not, you'll be able to figure out what to do!

Since you "pack like a man", travel like a man and just wing it!

Have a blast and don't sweat it so much, dude, this is the only shot at this life you get, grab all the kicks you can!

Don't stress it. When Jim and I travel he takes one day every other day to rest and do nothing. My family and friends have accepted that and so will yours if they are true friends.

Plan it that way and all will work itself out. If you flare, rest and let them deal with it. :hug:

It's normal to be a little apprehensive - I think we've all been there. The first time is kind of scary. But are you going to let some puny little disease keep you from taking a simple little trip that you really want to take? What are you most afraid of? Being sick or looking silly in front of your friends? I don't want to sound harsh, but I really have walked in those shoes.

Shortly after my dx, DH and I and our 2 yr old son went on a 7 day Alaska cruise. I didn't enjoy it nearly as much as I could have because I was too busy wishing I didn't have MS and could do the zipline instead of the tourbus. I was such a dumbbell! This past fall we went on a 2 week cruise from Istanbul to Barcelona, and I enjoyed every minute of it!

You CAN do this, if you want to! "Sufficient unto the day is the evil thereof."

Hi Punk,

I also agree with what some of the others have already said. I KNOW it is hard sometimes but please, don't let the MS ruin your life too much then it probably already might have done!!! You don't know what is around the corner so it is really important that you live each day the best you can. It IS hard sometimes but it's better then having regrets about things you wished you could have done when you felt well.

I understand what you are saying about the flying though. Honestly I do. We went on Vacation to Las Vegas at the beginning of March and I was SO scared about how I would react to the plane. Would I end up in a pain flare? Would I need to go to the ER's whilst on vacation and have an unfamiliar doctor treat me? Would I be able to cope etc? I think it is all completely normal, especially if it is the first thing you have done something since becoming ill.

The Plane journey really took it out of me and I spent nearly 5 days in bed once we got off Vacation BUT I wouldn't change it for the World!!!! It was SO nice to be able to get out of the house for a bit and see some sights ... yes, it hurt like h*ll and I had to rest a lot but it was definitely worth it just to have some fun and be a "normal" teenager for a little bit!!!!

Please try and not let the MS rule your life too much. It has probably already taken a lot from you so please don't let it try and take anything else from you. I KNOW it is easier said than done sometimes but try not to panic too much - that will only make things worse and everything will probably go OK for you!!!

I agree with what some of the others have said about the flying. Write a list about what you will need during the flight and take some extra meds to try and prevent any flare-ups. When we were flying to Vegas, the journey was 10 hours long so I chose to travel in the most comfiest clothes I had as I already knew the plane journey would probably cause my pain to go up. Maybe talk to your Doctor also if you are really concerned and see if he/she can prescribe you something that might calm you down. My Pain Management Doctor created an "Emergeny Medication Pack" for me so that I had some extra pain meds to take if/when my pain went up. Also, remember to keep moving as much as possible on the plane to ensure the circulation keeps moving. My PT's adviced me to keep walking up and down as much as I could - even if it was a bit hard and painful!!

I hope you have lots of fun at your friends wedding and try not to worry too much - i'm sure everything will go fine and most of the times, all of the worrying is just in our heads!! Don't let the MS ruin your life too much - live each day the best you can and don't regret anything that made you smile or be happy, even if it was just for a short period of time!!

Thinking about you and please Congratulate your friends on getting Married soon - I hope all goes well and we want to see lots of pics if at all possible please!!:D:hug:

Pack your bag and git!

You can talk to the doc and get a scrip for oral steroids or the actual steroid powder that you can mix with juice and drink if you are that scared of relapse, but isn't it only a few days?

I did a 10 day trip to watch my godson graduate from the Citadel in May of 07. Coming from Maine, SC was HOT!

I was scheduled to start Tysabri and the doc called when he got the results from my MRI and told me I had to have a 3 day course of IVSM. I told him I was GOING to SC and I was leaving in THREE hours and he had to come up with some other solution. :p

He sent me with 180 prednisone to be taken 30 pills twice a day. :eek:

I waited until after the graduation and did the pills. I warned everyone there that it was steroids and the problems I had while taking them as a warning. :cool:

No problems resulted from either me taking the pills or 'roid rage or any of that. I rested and hung out on the beach, with the younger folks obliging my need to cool down by pouring buckets of water over my head when they thought I needed it!

In short, even though I knew I had to do what I had to do as far as the steroids went, I still had a good time and I wouldn't have missed it for the world! I was with people who loved me and looked out for me, but nothing went wrong and if it had, we would have dealt with it!


GO AND HAVE FUN!!!

:)

everyone here makes so much sense thank you so much.. i guess i just needed a kick on the butt from other ppl with the MonSter to get me moving...

oh i will be gone for 2 weeks so yeah if it was just a weekend trip.. meh no big deal..

also it will be a honeymoon for my wife and i because we never had one when we got married.. cant believe that girl has stuck with me for 9 years.. i think she is the one with the brain problem lol ;)


pics you bet! video you bet! ummm but the wedding is open bar so expect to see alot of drunk pics of me.. :D;)



i am just going to book our fight/car rental tomorrow and call my neuro Monday.. just so she knows what is up. and if she wont agree to call in IVSM for me i have 10 viles i have stock piled for the "just in case" factor over the last 3 yrs... so i am good with that.. but getting on a plane i am not sure would they let me take that massive needle with me?

i was thinking id just ship it to myself in FL (aunts house) and if i don't need it ship it back before i leave..

anyway i am going come hell or high water... i refuse to let this mess up what i am sure will be an awesome 2weeks.. and i have you all to thank.. :grouphug:

hi punk,

when i have a trip to make the name of the game for me is planning.
i ask the what if's and develop a strategy. whether it's taking a cooling collar or planning for my meds.

try not to stress out too much because that will make you sick.
and ask your wife for help.
IF you have a flare you can call your dr. the chances of it happening are slim.
also, think about the positives and enjoying the water and weather.

Do it
 

My 32 yr old daughter and I have learned to travel with her progressive MS, her motorized wheel chari, and her hoyer to lift her up in the biggest rest rooms we can find. When her legs wouldn't stay in the chair we tied them in. When the rest rooms weren't big enough, I took the trip ahead of her by myself and found bigger ones. Now that she can no longer help enough for me to do it alone, I bring somebody with. We don't travel much but the idea is, DO WHAT YOU CAN while you CAN, LIVE!!!