[down2earthlupie]

Hello fellow lupus/FM friends,

I’m Down2earthlupie, to give you some background I’m a 36-year old black female with lupus SLE, lupus nephritis, fibromyaglia, ostopenia, degenerated bone disease, kidney disease, raynauds, and angioedma to name a few. Oh did I mention that I’m an active duty military officer, 17-years.

I first got angioedma in 2006; I went to the ER five times within a 6-8 week period. The doctor said it was a mystery. So I went on with life. In March 2007, I was diagnosed with a plural effusion. The fluid was positive for ANA and so my journey began. I had a collapsed lung for 7-months before I had a thoracic Decortication /pleurodesis /pleurotomy/ bronchoscopy in October 2007.

By March 2008, I was deployed by my choice, to Afghanistan. My civilian rheumatologist was against it, but I was stable (400mg plaquenil and 5-10mg of prednisone). By June 2008, I was medevac from Afghanistan back to the states. It wasn’t determined until October 2008 that I was going through the early stages of kidney failure.

Since then I’ve had numerous aliments, but they weren’t the same as before. In January 2009, I was diagnosed with Fibromyalgia. I went to two medical boards for the military to get medically retired. Not once, but twice the Army said I’m fit for duty, I’m just non-deployable. I can only go overseas for 1-2 months at a time based on my labs and appointments.

I’m a true believer that God works in mysterious ways and things happen for a reason. I love my job it suits my “new normal”. My question to ya’ll is how do you handle traveling? On short 4-5 hour flights I have to use a wheelchair assist from the counter and gates, I broke down a got a handicap plates and I use a cane when traveling. I will be going to Germany next month and I just booked my flight and I will be in the air for a total of 17-hours. I did get a bulk head window, thank God. Please help! Any and all comments will be appreciated.

Thanks,
Toni

 

[lazylegs]

Hi Toni,

Thank you for your service. 17 years is a long time. It is hard to imagine they military couldn't at least keep you in the states. That is just crazy.

I have never flown for that length of time. Two things that help me the most when I do fly is to stay hydrated and stand up and walk around frequently. You can even stand in front of your seat and do some simple stretches. It also helps to wear support stockings to keep the swelling down.

Traveling days are always kind of crazy. I suggest setting a timer to remind you to take your medications. Keeping everything as normal as possible will help.

Have a great flight,
Lazylegs

 

[onetay]

I would be looking into a sleeping pill for most of that flight and trying to walk around some at the beginning and whenever you can. Try not to get stressed out about the flight. Let the flight attentants know that you have problems and they maybe able to help some with pillows and exercise for you. I would also encourage you to drink water to stay hydrated as sometimes we forget to watch the easy things to fix.

I hope your flight is fun and enjoyable.

 

[Clare.T]

Welcome to the forum Toni
It's great that you can keep on with your job and have a varied life despite the lupus problems The army sounds very accommodating but it seems odd to send you abroad in the circumstances. I have nothing to add to the excellent advice already given except to have a word with your rheumatologist and make sure that you have all your medicines and maybe something to tide you over if you have a flare like Prednisone but no doubt you can access excellent facilities when you are there. They usually give some exercises on the inflight information and you could look up further stretching exercises suitable for sitting
The usual flight time from NYC to Frankfurt is about 8 hrs if I remember correctly so quite how you will be airborne for 17 hours is a bit puzzling.
I would recommend having an easy schedule the first week after arrival and on return, to give yourself time to get over jet lag although that depends on how well you can sleep on the plane and what time of day you are flying. I always had a problem with my internal clock adjusting to meal times. After being in the UK for a few weeks I would wake at 3 am in NYC feeling very peckish because it was breakfast time inside me or even late supper despite having eaten supper earlier. Having healthful light snacks to hand for a series of smaller meals can help adjust.

Best Wishes
Clare

 

[Pink Pearl]

Hi Toni, and welcome to the board.

I also thank you for your service to our country. You are impressive that you have all your health issues and still keep up with your service.

I've not had problems with my kidneys until recently. I don't have the level of problems you are dealing with.

For the hours of flight, are you counting the hours between when you take off from the east coast, and then land in Germany? If so, allow for the time difference, and then calc your flight hours. It seems that you have a 6 or 7 hour time difference and then a 8 or so hour flight. That would give about the 17 hours that you are calculating.

I also prefer a bulkhead seat. Drink a large amount of water, avoid the sugar soft drinks, if you can get juices take them. Wear shoes you can adjust if your feet swell. I find "Grasshopper" sandals which have velcro on the toes, and the heel strap, with elastic straps over the instep are my best bet for that length of travel. Alternate, your walking up and down the aisle, and rest. I always pack a few string cheese in my carryon so that I can eat protein if I need it. Also, an apple sliced before hand is handy to have. Avoid alcohol and soft drinks they can cause more edema problems, and slow down your renal functions.

Again, thank you for your service and good luck with this transition.

 

[donna kosk]

hi
when i fly my gp always prescribes clexine because of dvt i always use it has prevention and inflight socks.
i have never flown so long though my longest is 4hrs 45mins but maybe it could be worth it to ask for clexine



take care
donna

 

[down2earthlupie]

Thanks for the advice!!!!

Hello all my lupus buddies,

Thank you all for your suggestions. I got a bulkhead, a wheelchair assist, stretching bands, a neck pillow, extra blankets, water, snacks and slip on shoes. I went to my first lupus support group meeting and they gave me a ton of advice too.

I love servicing my country and I'm fortunate to do so. I am non-deployable meaning that I will never deploy to Iraq or Afghanistan for more than 2-4 weeks instead of the 12-15 months. I enjoy short trips to GE, Korea and Japan, I love the culture, food and shopping

Thanks for all the suggestion!

Toni

 

[mooks]

Hey, I'm doing a 23 hour flight! (well its 7 then 16 with a two hour stop in between) I hadn't thought about how it could effect my lupus? I usually just take an aspirin before a long haul...

 

[pollianna]

Hi, wow impressive that you are still serving....I would also take asprin, baby one just in case...In flight socks and either diazepam or something to make me sleep through the flight

best of luck with it :hug:

 

[Sideways Sally]

Good luck with the flight Toni, be sure to let us know how you go!

 

[GCCH]

I too, will be flying for extended periods of time soon (total of about 16 hours to Asia). What I find helps for me is to sleep enough to be somewhat refreshed upon arrival, but not too much so that you can't sleep that evening. Also, make sure you have simple comforts available (e.g., comfy clothes, pillow/blanket, etc.). During the flight, eat lightly but drink lots of fluids. Get up and about as much as you can. Have a good flight, and all the best on your next duty.

 

[down2earthlupie]

Mooks,

Aspirin does nothing for me. My rhuemy put me on Soma a muscle relaxant. So far so good. I'll let you know how my short flights to ND and Vegas are. They will be my trail run.

Down2earthlupie

 

[HST]

Hey, I'm doing a 23 hour flight! (well its 7 then 16 with a two hour stop in between) I hadn't thought about how it could effect my lupus? I usually just take an aspirin before a long haul...

hehe. that sounds awful. What is that? Europe to Australia via Singapore or something?

I imagine you'd be best to talk to your doctor but the usual rules would apply - walk around every couple of hours and keep yourself hydrated.

 

[KarolH]

If I take a long flight I always get up and walk so that I don't clot or have something else go wrong. It also helps with stiffness. I hope your trip goes great.:wink2::wink2::wink2: