Happy thing

[BethannUK]

My hubby, the gem that he is, has given me a flight to go home to see my family. Asked Rheumy today and he said, as I am having three pulses this week, I should be in good shape to travel soon- so hubby booked me 6 days in US to visit my Mum, Dad, etc. I am so happy! I am so impressed with his thoughfulness!!

I am also a bit nervous about travelling ... Do I need to get any kind of letter or anything about my tablets? Some of them are quite dramatic controlled drugs and I don't want to bring the bottles if I can, just my one week medi-dose box- I get pills two months at a time and the supply I would be carrying would be huge! Has anyone else run into any troubles or am I worried about nothing?

I called the airline, and they have given me a sole seat at the very back of the plane for the long haul flight (the Boston/Zurich ones)- there is no seat on either side of it- and it's right next to the loos. They also said that they can ferry me in a chair from the plane to the concourse after the longer legs of the flights. If I don't need them to, they can also cancel it, but I am afraid that after 8+ hours of flight I might not be very mobile and I don't want to look like quasimodo when my family sees me.

The flight from here to Zurich is only 2 hours, so it's not too bad and I think I wil be okay. I am gonna try to go without any checked luggage to make things easier at least on the outbound flight.

If anyone has any advice or anything, about air travel, etc, please let me know...

I also don't quite know how to manage my family when I get there- it's a short time, and there are a lot of people. I am gonna need to hide sometimes, I think... everyone wants to see me, is so worried about me, but I only have one me to spread around and I am a bit nervous. I don;t want to scare anyone with me being a very different person than I was the last time they saw me.

Thanks for listening

[alobreto]

Hi, Bethann! style_emoticons/<#EMO_DIR#>/wink.gif
I don't know about what is required in the way of documentation for international travel, but I can tell you that if you are in the USA, and say you're stopped because your car license plate light is burned out or some other minor going on, if you are found to be carrying ANY controlled substance without the issuing pharmacy with YOUR name on the label, you can get into A LOT of trouble unnecessarily.

My recommendation would be to ask the issuing pharmacy to send you some labels so you can put a smaller supply into smaller bottles for travel purposes.

I hope you have a grand time on your trip!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[Joandublin]

Hi Bethann
Gosh what a wonderful thoughtful husband! You sound so excited and yet so understandably nervous as well. I think what Angela says is very good advice. It would be important to have something official with your name on it to say these drugs are prescribed to you. I work in a drug rehab project and in the past we have had occasion to take some of the women away on planes. They have always had to have a cover note to explain their medications to airline staff, etc.
Even a photocopy of your prescriptions would go a long way in a sticky situation.....

I hope the flight goes okay for you. For my part I dont do too well when I am flying. I usually end up sick or really tired or whatever. Try to get yourself into a comfortable position, put on some relaxing music piped directly into your ears (!) and get an eye cover to block out the world... If you are like me you wont really fall into a heavy sleep but the music will really help to relax you and make you less stressed. Drink loads of water (good that you are near the loo!) and take short walks at least every hour. This will help the stiffness and very important for preventing DVT's as you know.

As for meeting the family....thats probably the hardest one. I would really think it would be a good idea to tell whoever you are staying with or whoever is collecting you from the airport that you are going to need maybe 8 hours sleep very soon after arrriving. Explain to them that you are much more likely to be able to enjoy the stay and meet everyone if you have been able to catch up on your missed sleep. They sound like they are really concerned about you and it is really up to you to tell them what is best for you. They cant know if you dont tell them.

I hope you have a wonderful time and enjoy every single moment of the trip
Luv n stuff
Joan
style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/clover.gif

[BethannUK]

Thank you all style_emoticons/<#EMO_DIR#>/smile.gif

I will take your very good advice, ask the pharmacy for a set of labels, and get the GP to write a cover letter. I could probably do something myself that says what each tablet is by it's markings and colour, and get that validated by chemist/ GP. I am probably gonna need to ask how to take the tablets- there is a five hour time difference and I will be in route for 12-14 hours all together with stop overs. I think I am gonna ask for transdermal patches rather than the MST tablets to help me with the time changes.

We have travel insurance.... I buy a yearly policy (thank heavens).I will take your exellent advice and bring my CD player and a "blindfold" thingee. I am glad you reminded me about DVT prevention- it probably would have been the last thing I thought of! I'll get some of those lovely sexy travel stockings LOL. I am trying to minimise checked baggage- with any luck, I will manage the outbound trip with only a carryon. I don't think I will be able to get off so light returning- I suspect Retail Therapy will be one of my treatments while in the US.

My walking stick is metal, but it is a foldable stick so they can open it up and look inside. That should be okay I hope.

Thanks so much for the advice and support- it feels so good to know I can come here and someone else will know what you need, and help you. You are a wonderful group and I am grateful every day that I found you all. Actually, hubby found you for me!

I have just sent Mum an email... a slight take on the "letter to normals" posted here in another area (I have posted it on my AOSD board- )))Letter to family (http://www.nolaflash.com/cgi-bin/yabb/YaBB.pl?board=NSF;action=display;num=1143875060;st art=0#0). She has also agreed to run interference for me with family if I need her to. Luckily the flight gets in in the late evening, so it won't be long til bedtime. Mum and Dad want to give me their bed- I keep trying to convince her that I would be better off in the recliner but they don't believe me!

You know it's funny- I'm nearly 43, but I still can't help to think that if I could just have my Mum hold me for a while and put her hands on my face it will all feel better somehow. Its hard being 4000 miles away. I can't wait for my Dad (still my Daddy to me- I'm the only girl... so I'm the princess lol) to put his big strong arms around me and make the world easier to bear. Mum's a critical care nurse (still working at 66, god bless her) so she wants to hear all the details of everything and know every last blood and test result. She even cornered one of the Rheumys where she works and drilled them on the details of the illness and course of therapy. My Dad is 68, and he just spoils me rotten.

They are both in pretty good health (my Dad, dam him, still has a six pack abdomen! I wish I had inherited his width and my mother's height instead of the other way around!) and very active, and are making plans to come here for a couple weeks later in the year to help me around the house a little and just to be with me. Until my hubby booked this for me, I didn't realise how badly I needed them to help me right now- since knowing I will be with them soon a flood of feelings have come out and I am so glad that I can go. I hope work understands that even tho I am off sick I can still take this trip- it's not a holiday, I really think its therapy!

You guys are wonderful, thank you so much. Your advice and ideas are so practical and useful. (((hugs))) I don't know what I would be without you all.

[Joandublin]

Bethann
I just read your version of Letter to Family. Am in tears.
Needed to cry though.
Have a wonderful time with your family
Luv n stuff
Joan
style_emoticons/<#EMO_DIR#>/Thanx.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[BethannUK]

((hugs))

[Clare.T]

Bethann
I have been doing the transatlantic trip regularly for several years. The best thing I ever did for myself was go as 'assisted'. It really transformed the whole weary process. Sometimes I have long walks to the gate, sometimes lengthy queues for security and immigration. You can get on first and settle down without battling along the aisles. The crew will help you in a number of ways.
Warn people waiting that you will be among the last off. You also get help with your baggage, often being able to check in without queueing or if you check in online, you can take your baggage straight to the baggage without going to check in desk and the porter will take it off the carrousel for you.

I don't need any walking aids normally, but I was finding the trailing, traipsing and standing in line were exhausting and a nervous strain as well as physical. I asked for wheelchair on a US internal flight when I had to change at O'Hare. Thank goodness, because the other gate was as far from the landing bay as possible in another terminal and there wasn't much time to spare and a very long sloping corridor.
That saved all the confusion about where I was going

When I returned to the US a couple of weeks ago, rather unusually you had to go up steps to embark. They asked me if I could manage the steps but assured me I could have a 'lift' if I wanted.

With my new policy in life, which is to do whatever is easiest when there's any option I opted for "the lift"
It turned out to be a sort of bus that rises up to aircraft door level. Exciting !

Clare

[BethannUK]

Oh Clare thank you- I will speak to he airline and update my needs from just teh longf legs of the flight to the whole thing- I just had a vision of what would happen if i spent an hour in a queue... not a pretty picture!

Thanks for your insight and advice!

[gretchenb5]

Hi Bethann,

I don't post often anymore, but I do a lot of reading, and I've appreciated your knowledge and the clarity of thought and explanations. You are a wonderful addition to the boards.

You have received some great advice about travelling (I've been reading with keen interest so I know more about travelling with this d*#n disease). I don't travel much, so I wouldn't have thought of most of those.

I have some thoughts about once you get there and need rest, though. First of all, I think it would be pretty fair to set a specific day and time that you will be available at your parent's house, and tell anyone who wants to see you that they are welcome to come by at that time and that you'd love to see them. Let them know (maybe through your folks?) that there are just too many people and not enough time, so you have to set it up this way.

I completely understand what you mean about wanting your mom to just hold you, and I really think that if you let her (and your dad) know that they can't fix this for you (nor do you want them to), but that the best thing they can do for you is hold you and let them know how much they love you, that would be the best gift they could give you, they would be extraordinarily happy to do that for you (and they would probably be grateful to know what it is you need from them). You might have more luck convincing them that you really really would be more comfortable in the recliner and that you promise to be honest with them about what you need after having this conversation, too.

Above all, do what you need to do to make this a comfortable, happy, and fun trip for YOU. Everyone there, I'm sure, wants to do whatever you need to make you feel better. You'll enjoy it the most if you're feeling good, so let everyone know up front that you don't have a problem letting them know exactly what you need (from everything you've written, it's clear that you have good self esteem and shouldn't have a problem with this at all).

Good luck with the flight and enjoy your family!!

gretchen style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[BethannUK]

Called MUm last night during an episode when the pain was being particularly bad, and I think they realise now a little more of what I am working with here. She has agreed to the recliner, and was sending my Dad off today for a new duvet and pillow so I can be comfy. He has been going crazy apparently stocking up with all my favourite foods and goodies so he can spoil me. Being Daddy's girl is a tough job!

She is "booking" visits with my friends- just as you suggested- she said that she will make sure I am not run ragged, and she is explaining to people that although they are used to me being pretty robust and vibrant and going out to eat, to shop, etc, I am presently fairly fragile and although they love me they need to allow me to have rest or I wont be able to appreciate the time I spend with them. For example, one of my friends wanted to take me out to a big posh restaurant- it's lovely, we have a tradition of going there, but I can't imagine how terrible it would be right now as I wouldn't enjoy it. Mum explained that a take-away or home cooked lunch would leave us more time to visit and give me a bit more energy.

My Mum has become an expert on autoimmune stuff now (give a nurse something like this to cope with and thats what they do !) and is trying to console my Dad, who confessed to me last night that he was worried I was dying and he has been trying to keep up a brave face, because he really didn't understand what was happening. You know, I never heard my dad cry before- it broke my heart to hear him on the phone. I'm now even more grateful I will be visiting- they will see I'm different, but he will also know that I will get through this. It was a crystal clear illustration of what these disease do to our families.

Your advice and support, and your love (which comes through so clearly), are all so appreciated. And thank you for your positive comments about my posts- I just want to help where I can- I feel like I so often come here for answers, support and insight that I have to do what I can to help out, too. I feel like this is a second home, and I am so grateful for it's presence... and all of you.

[Linda_L]

Hi Bethan

Hope you have a fanatastic time and I'm sure the travelling and family stuff will all work out fine. Just a word of caution on the Insurance. Many travel policies will not cover you for an exisiting medical condition that you didn't declare at the time you bought the policy. I know because I have been trying to get travel insurance to cover me for my MCTD and none of them want to know! Have a great time!

[raggedyann1]

Bethann,

I hate to tell you this but all your medications must be in bottles with the pharmacy labels. Bring your medication sorter empty and fill it when you get to your parents house. It wont matter what descriptions you have they have no way of believing you. Getting smaller bottles from the chemist is definitely a good idea and a cover letter from your GP is also recommended.

I hope you enjoy your vacation.

Take care,
Karen

[BethannUK]

Good points- no one cared anout my meds. Proof that if you have all required documents no one wats to see them. There were a couple of remarkably nice people.
=========

Bad points- some people are jerks wll always be jerks. and take great delight ampount of caysing pain to other people.

Best news- Being with Mum, Dad.... everyone.... Love you all

[Clare.T]

I'm sorry the trip out wasn't a good experience and hope the return goes smoothly. You can bet your bottom dollar that if you didn't have your meds properly documented somebody would have asked about them.
I hope you can complain about the jerks if only for your satisfaction. I'm convinced that what comes round goes round, have to be

I'm sure you are having a wonderful trip all the same

Bye for now

Clare

[BethannUK]

OK, just an update on how things went---

The reutrn trip was 100000% better than the out going trip. People to whom I complained were mortified, and took it upon themselves to make things better. Tend to think this was because they were the USA side of teh organisations LOL and they acted like Yanks in customer service do- Saw a problem and took accountability for it.

Had some pain because I had to do some very steep stairs and it knackered my back, but oh well. it was okay.

ZUrich airpiort has a nice "assisted persons'" lounge where they keep (Hold?) people who will need support or help/ It was nice and comfy- no telly or anything, but at least you didnt have to worry about leaving your bags if you needed to pee- there were security and support poeple./ Only down side was that the one vedning machine took only Swiss coins and there was no real food there. Good thing I nicked a little nosh from the plane!

Logan Airport in Boston, and Birmingham Airport in England both had severe deficiencies and I would advice anyolne travelling there to be veyr clear and specific about your needs.

Thank you all who gave me advice, support and such- it was a good trip, a time to refill my soul-

and the quote of the trip?

my 3 1/2 year old niece- when I was crying when I said goodbye said not to cry it was happy to see me. I said yes, but I loved her so much I was crying anyway. Trying to explain this, I said, you know when you have have a glass of milk and you fill it, but you put too much in and it spills? Well, thats what my tears are like- I have so much love for you it wont all fit inside and so it spills outside, like when the milk spills.

She looked at me, and said "ShaSha, you dont cry milk, you cry AFTER milk gets spilled because Mom yells. " Then she thought a minute and said "Next time I spill milk, can I tell MUmmy its because I was missing you and thats what made me spill it???"

LOL
so thanks all-

Bethann

[cath]

Glad you are back safely and that the return trip went better style_emoticons/<#EMO_DIR#>/flowers.gif

Aren't the things little kids say priceless style_emoticons/<#EMO_DIR#>/tongue.gif

Take care,

X C X