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Thread: To Vacation or not to vacation

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    Default To Vacation or not to vacation

    I am new to the forum and would appreciate any input for my question. Just a little background of me. I had brain surgery 7 months ago and came out much better than before the surgery. I felt wonderful for 5 months- then these symptoms hit me like a ton of bricks! Extreme fatigue, sleepy (this is an understatement- so tired often I can't keep my eyes open), body aches (feel bruised all over- if my daughters hug me too tightly it hurts), joint pain (mainly fingers, wrists, toes, and ankes), rash across my nose and cheeks, rash on my neck from sun, sun drains me!! There are some others- but those are the main ones. Well- anyway...my neurologist was trying to figure out what was wrong with me- I went back this last Tuesday and he said blood work was inconclusive (basically he said it was generic set of tests that could be hit or miss) but he felt like with my symptoms and the progression that it was auto immune- probably being lupus. But he said he couldn't "officially" diagnose me cause it was beyond his expertise. He referred me to a rheumotologist and his office is working on an appointment.

    Ok- finally my question....sorry! So- I KINDA have an auto immune diagnosis- well my husband and I were planning to take our girls on a vacation next week. We are going to a theme/water park. I am really concerned about spending two whole days outside!!! The sun makes me feel horrible (usually the day after I am in the sun..don't fully understand that) But- what should I do? How can I protect myself?? I want to be with my girls and husband but I don't want to have a full blown flare! I was told by a friend thats a nurse that I probably haven't had a full blown flare yet. I don't want to risk my health for two days of vacation. Any suggestions would be greatly appreciated!

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    From what I have been told and read...the sun is not our friend...We (lupus patients) have to protect ourselves from the sun...Lots of sunscreen-highest SPF you can find, wear a hat, sunglasses and try to cover up as much as possible. Sun doesn't bother me but I still protect myself as I don't want to test myself. I think being in the sun depends on the individual just like certain foods can cause flares but that is trial and error as well.

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    When symptoms appear, it’s called a flare...and the expression hit me like a ton of bricks seems you are in the midst of a flare...

    There is a "Sticky" posted in Lauri's Forum on the Index section of the forum. Information explaining how to protect yourself from the sun...and managing your symptoms...

    Keys words for outdoors..

    Sunblock lotion.
    Shade.
    Layered clothing.
    Hats with a brim.
    Sunglasses.
    Rest to conserve energy.

    Rit-Dye products, makes a sunblock you can wash your clothes with...
    Depends if your vacation is now or later. www.Coolibar.com for already treated clothing. Me, I just dress in layers...

    Most of all listen your body...rest before your trip and have fun.

    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    WELCOME!!! And once again our beautiful Oluwa said it best!!!! She summed it up quite nicely i must say!!!!! GO OLUWA!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Default Lupus like flare to rosacea

    I appreciate your concerns. I have gone from being told I had a lupus-like flare, the extreme redness and swelling on my face, neck and upper chest along with extreme fatigue and joint burning and soreness to now being told I have rosacea (which doesn't explain the fatigue and soreness). I am glad you will be seeing the rheumatologist very soon.

    I was told to use a 60+ sunscreen and to wear a hat. I wish you well. Maybe others with more experience in dealing with the symptoms you described can be more helpful.

    I hope everything works out for you to spend quality time with your family. I have become quite isolated over the last six weeks. I hope this doesn't happen to you. Betty

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    Hello Lovemygirls2.....

    Glad you joined us....

    I've managed to take several fun vacations over the past few years with my kids and husband....even to sunny California and Disneyland twice.

    It can be done...and you can have lots of fun too....if you carefully follow the great advice Oluwa gave you. I would do my best to head out early in the morning, well protected with my sunscreen and hat and be careful to move from sun to shade as much as I could. If my husband was taking the kids on a ride, I would find a shady bench and drink lots of water. The key, I think, is practicing all the right stuff and remembering not to push yourself and overdo it. Take breaks.....spend a little time in the pool or waterslides with the whole family and then have your husband swim solo with your girls for awhile, while you find a relaxing lounge chair, a cold drink, and maybe a book.....or take some pictures of your kids swimming.

    For my trips, we would always take a break around lunch time and head back to the hotel (my kids were little then and needed some downtime and short naps). We'd have lunch, and nap or do quiet activities in the room during the hottest part of the day. Then in late afternoon, when everyone was rested, we'd head back out to the park and enjoy more rides and dinner.

    You can always find ways to adjust your vacation itinerary, so that you all get to have plenty of quality time together.....and YOU get some breaks from the sun and heat of the day, as well as resting periods.

    I would say go for it....but be sure to let your family know that you want to have plenty of fun with them, but you'll need to take extra good care of yourself along the way.

    I'll keep you in my prayers for an enjoyable, flare-free vacation full of fun and good memories.

    Fondly,

    Lori

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    hi lovemygirls2,

    first, welcome to our family.....you will always get precise and complete answers to your questions here. We have some really wonderful members, and there is always someone around to help.

    Oluwa and Lori both gave great advice, I agree, you should go on vacation, just take extra precautions to protect yourself.

    sounds like you have a good neurologist who is dedicated to helping you....so glad you have him. Hope he can find you a good rheumatologist.

    have a wonderful vacation and let us know how everything goes.
    Phyllis

    share a smile today

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    Hello and welcome to our family;
    You have been given the best advice about vacations and protecting yourself from the sun. Unfortunately, there are some times when this disease will dictate to us what we can and cannot do (often meaning that we are unable to get out of the bed or to leave our homes). For many of us, this happens too often. So, I say, if you are physically able to enjoy a vacation with your family, take full advantage of it!! Never limit yourself based upon fear of what might happen. Please follow the advice that has been given to you here and make sure that you give yourself adequate rest periods so that you can enjoy your vacation. Do this and GO ON YOUR VACATION!!!
    Also, while on vacation, make sure that you eat properly (avoid red meats and limit your dairy products), drink lots of fluids (keep water with you all of the time), take your meds religiously, and, again...rest..rest...rest!! If you belong to an HMO, find out if there is one where you will be vacationing in the event that you might need it.
    I hope that you have a wonderful vacation with your family and do try to enjoy yourself!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Thats right Saysusie!!!!!! Im with you!!! Enjoy it when you can and enjoy it if you can!!!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Default Welcome lovemygirls2!!

    I agree with everyone here. If you are physically able to go on vacation, go for it!! Just protect yourself as much as possible. Find a shady place to sit and relax, lots of sunscreen, wide brimmed hats, layers of clothes and naps!!
    Like you, I am planning a family vacation in July. We rented a cabin in a forest, but have activities planned that will involve full days in the sun. I use spf 50 on my kids, so I have it to use on myself. But, it is hard to not be in the sun when you have kids.
    My new rheumy (I met him yesterday) yelled at me for having a slight tan and I am not even that dark...years past I was a sun goddess and would lay out whenever possible..not any more. Like I told him, having three very active kids (one is a toddler), you can't really avoid the sun all of the time, but we can protect ourselves. Like you, I feel lousy when I am in the sun for an extended period of time.
    Have fun on vacation!!

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