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Old 03-14-2009, 04:31 PM #11
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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!!
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Old 03-14-2009, 08:26 PM #12
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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.

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

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.

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!!!

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Old 03-15-2009, 12:39 AM #13
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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..



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..
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Old 03-15-2009, 06:55 PM #14
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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.
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Old 04-04-2009, 11:29 AM #15
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Originally Posted by PunkDizzle View Post
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...
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!!!
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