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diagnosed last week: should I travel tomorrow?

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Posted 5/7/2011 9:24 AM (GMT 0)
Hello forum! I'm in need of some last minute urgent guidance.

I was diagnosed with Lupus exactly one week ago today. Went in for a minor skin rash and came out with Lupus. Right away started taking malaria meds and steroids. After feeling understandably tired and down for the first few days, the last two days I've felt great. Better than I have in a long time actually.

Then, tragically, my partner's grandmother passed away today. They were very close and I need to support my partner.  My question to you is is it adviseable to travel right now for the funeral.  It's a long flight from Toronto to Winnipeg then an even longer 9 hour drive north to the reservation (extremely isolated with limited healthcare) I feel great but the doc said that the steroids will basically suppress my immune system so much so that if a person on the street coughs in my direction I'm going to get sick. Does that part kick in right away? If I do get sick, will it also take longer to get better? Another consideration is that we've also book travel plans to Germany and Paris and the end of this month so I'd like to feel well for that trip too.

I still know very little about lupus and these drugs. This has all happened so suddenly and all at once. Any guidance from those more knowlegeable would be greatly appreciated in making this decision to support my partner on this trip.

Thank you kindly for taking the time to read and consider.

Nina

Posted 5/7/2011 11:57 AM (GMT 0)

Hi! Nina,

I am so sorry for your family's loss and sadness. And welcome to Healing Well. My vote, I think you should go. But strictly limit what you do when you get there. One of my hardest lessons about living with lupus is that if I do THIS, I can not and should not and must not.....do THAT. Prednisone and plaquenil act like miracles, and increased  infection risk is always there. Life is about balance and compromise, and with autoimmune illness, it's tough. There is so much I didn't do because I was sick, and I was still sick, so now I think I can go and be sick... or not go and still be sick. If you can stay 12 feet away from children, (the little germ pots tongue ), and get everyone on board with helping you to have lots of quiet rest time. Ask for wheelchair help to and from the plane to help conserve your energy. Yes, you can walk, but think in terms of walking, or having the energy to visit with family over a family dinner. Which would you rather do? Take blanket and pillow, and walk every hour or two up and down the aisles to keep your circulation going and drink lots of plain water. Make sure you get out to stretch your legs on the road trip part. And don't hesitate to say what you feel able to do. Or not do.

hugs, and prayers for safe travel and good memories of your grandmother,

suee

Posted 5/7/2011 2:06 PM (GMT 0)
If your only symptom one week ago was a skin issue, I doubt you will develop more symptoms within the next few days, so I would say it is safe to travel.

There are a few things you can do to take care of yourself that normally might not be an issue: Make sure you sleep at least 8 hours, don't party all night! A quiet hour of napping or reading in the late afternoon is usually helpful. Eat 3 balanced meals a day - steroids will make you crave carbs, but try to stick to proteins, fruits & vegetables. Avoid the sick as much as possible, drink plenty of water, wash your hands often if around the sick. Take a decent multi-vitamin.

The biggest thing is to listen to your body. My personal rule of thumb is to do about 2/3 to 3/4 of what I feel I'm capable of...usually it's over-exertion and/or stress that starts me feeling poorly. Since you are stressed by travel and by being newly diagnosed, I'd stick to 2/3 or less of what I might normally do.

Try not to worry!! Just be conservative and use some precautions and you'll be fine!
Posted 5/7/2011 4:10 PM (GMT 0)
In my opinion, you should stay home and take care of yourself. That sounds like a stressful trip. I've had lupus for approx. thirty yrs. and know that overdoing it or being stressed can cause flare-ups. Send a card / flowers so they will know you care, but you need to take care of yourself first ! And, try to stay out of the sun as much as possible (wear long sleeves and a hat !)
Posted 5/7/2011 5:34 PM (GMT 0)
Traveling can be a bit more challenging with lupus but it sounds like your case is mild? so I would go. I've found that I need to make sure I have enough medication to last, I keep a current list of my meds in my wallet, and I have one of those bracelets that alerts emergency personnel that I have lupus in case of an accident or something. And I try and be careful not to overdo.
Posted 5/7/2011 9:13 PM (GMT 0)
If you're worried about catching a cold on the plane you can wear a mask. Not only will it protect you, others will avoid you thinking you're contagous and they will keep their distance thus proctecting you even more. :)

In the car I'd cover up and use sunscreen.
Posted 5/7/2011 9:16 PM (GMT 0)
Hi Nina:

Sorry for your loss and recent diagnosis of Lupus-Since my diagnosis a few years ago now. I have always done as I had planned but always put my health first and listen to my body. This is easy once you tune in to it.
But go attend your trips and enjoy the trip and just try to began tuning into your body. When you are tired -rest take a Nap, give into your self and read and learn from others.
i have read and gotten alot of help from this site. Be well
Posted 5/8/2011 1:19 PM (GMT 0)
Thank you all for your quick and generous guidance. I bought a bunch of hats scarves and long gloves today; we're taking the long trip to the bush!

We're on our way to the airport now. The tips were very helpful. I never would have thought to ask the airport for help, but they said they would give me a ride to and from the plane which is awesome because come to think of it, hustling through the busy airport was exhausting even before I got sick. I also really like the idea of scaring people away with a mask. lol.

I have a lot to learn and I'm grateful to have found this resource. It will take a while to get used to limiting my activities but I learned my first lesson yesterday. Spending the day working and shopping left me aching terribly and sick to my stomach by the time I went to bed. I'm a pretty hyperactive person so I'm not sure how but I'll find a way to adjust and chill.

Thank you all ever so kindly from our family.

Nina
Posted 5/13/2011 5:30 AM (GMT 0)
Hello again,

So we're back from our travels and I'm so glad I went. It was hectic and I over did it but it was undoubtedly worth it and turned out to be just the spiritual connection I (didn't know I) needed after this intense past couple of weeks. Thank you again for your help in the decision at a worried time and I found the tips useful as well. I wore a ba

I'm grateful to learn from the knowledge on this forum. There's so much I don't know and what I don't understand, I worry about. The Spoon analogy has already become part of our vocabulary; though I still haven't managed to not outspend my daily spoons. It's just the first time I've felt this well in so long I can't seem to stop going (my mind is especially unable to be calmed). I'm ever full of life.

I've been particularly concerned about sun exposure. I will search the forum, but if there are any previous posts of note on the topic please do point me in their direction. I've been erring on the side of caution, but I think I'm being overly paranoid (I was even worried on the plane; it's so bright in a can in the sky! What about the bright window in the office? Why is my shower so bright and sunny?!). Again, we're traveling to Germany in just over a week and I'm trying to (over?)prepare.

Wish you all well.

Ever grateful,

Nina
Posted 5/13/2011 10:37 AM (GMT 0)
Glad you had a good trip and hope you have a great time in Germany. I would love to go but getting me there is a problem as I am terried of planes and a flight that long...probably wouldnt be a good idea for me or my plane buddies. LOL

about the sun...about 60% of lupus patients get sun-induced rashes and a further 10-20% complain of other clearly sun-induced problems. You have to figure out if you are one of the unfortunate ones who can not be in the sun. I can be in the sun but it is the heat that hurts me so bad!! So on nice spring days like it is now (well in NC) i love spending time outdoors because I know I can't in the hot summer day!

Have you experienced sun issues before?
Posted 5/13/2011 7:23 PM (GMT 0)
Hi Amy!

Thank you for your reply and well wishes for our trip!

Ever since I was a kid I've always gotten heat stroke (dizzy, nausea, red skin) after spending too much time in the sun and/or heat. Could that have potentially always been lupus related?

Thanks again!

Nina
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