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Lovemygirls2
06-12-2009, 09:11 PM
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!

dsunshine
06-12-2009, 09:41 PM
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.

Oluwa
06-13-2009, 12:29 AM
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

lucky7
06-13-2009, 03:51 PM
WELCOME!!! And once again our beautiful Oluwa said it best!!!! She summed it up quite nicely i must say!!!!! GO OLUWA!!!:cute:

Betty Boop
06-13-2009, 05:36 PM
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

Rastagirl
06-13-2009, 09:23 PM
Hello Lovemygirls2.....

Glad you joined us.... :wavey:

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,

:cool2: Lori

mountaindreamer
06-14-2009, 06:18 PM
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.

Saysusie
06-16-2009, 10:19 AM
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

lucky7
06-16-2009, 01:35 PM
Thats right Saysusie!!!!!! Im with you!!! Enjoy it when you can and enjoy it if you can!!!!!:yes:

purple_butterfly
06-17-2009, 02:49 AM
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!!

ButterflyRN
06-17-2009, 04:34 PM
Go and have a great Vacation!! Stay covered with protective clothing and sunscreen and dip in the shade as much as possible! Enjoy your time with your family and have a great time!!!

Lovemygirls2
06-20-2009, 10:11 PM
Thanks so much to everyone that posted a reply! I took all of the suggestions offered and I had a great time with my family! I actually found an SPF 85 (didn't even know that existed), found lots of shade, drank lots of water, and I listened to my body! My family was just so happy for me to be there- I have felt so bad lately that when I told them I needed to rest- they completely understood! I am so thankful that I found this forum! :cute:

Rastagirl
06-20-2009, 11:57 PM
I'm so happy to hear your good news. And thankful it worked out so well for you. Sounds like you had a really fun family vacation. It's wonderful you have a family that loves and cares for you. :grouphug:

With Lupus, you learn how to appreciate the times that you feel good, or at least okay enough to participate in activities that are important to you. And you make sure and grab those special moments and make wonderful memories with them. Memories that will help you get through the tough times that may lie ahead.

Good job on the sunscreen. I actually found one a few weeks ago with 100+ spf. I was amazed. It's Neutrogena UltraSheer Dry-Touch Sunblock with Helioplex. I love it! This one is almost dry to the touch after applying. I don't like the greasy coating most sunscreens leave on you. And this one has a nice scent too. So far it's given me great protection. I found it at Target....and it's a little spendy at $9.99 for 4 oz., but I think it's worth it.

I'm glad you found this forum too....there is a wealth of knowledge and experience here and some wonderful people that are willing to share it. You are now among friends.... :veryhappy:

Fondly,

:cool2: Lori

Angel Oliver
06-21-2009, 07:29 AM
Oh such good news:yes:.Glad you found this forum too my friend.Well done!!

love
Amandaxxxxxxxxxx

mountaindreamer
06-21-2009, 09:40 AM
hi lovemygirls2,

so glad you went on vacation with your family....i know it made them feel good to have you along. Sounds like you did a great job of protecting yourself, so give yourself a gentle hug.

i have used the sunblock by neutrogena that is 100 spf, and it really works. It is not greasy, and it enables me to be outside a little....i recommend it...thanks lori for sharing your target shopping skills with us.

Danica01
06-22-2009, 02:38 AM
Welcome and you have had so much advice given to you and it is all amazing advice and suggestions. I am so happy you had a wonderful vacation! Our disease can be hard on our family members and you found a way to make it work so you could go on vacation and devote your time to you kids.They will remember that and always be thankful......good choice and keep us posted on how you are feeling and what everyone finds out!!!!!!!!

purple_butterfly
06-22-2009, 07:46 AM
I am so glad that you had a wonderful time on vacation and that you were able to enjoy time with your family. I am leaving July 6th and am definately going to get some Nutrogena spf 100 for the trip!! A little nervous about all of the walking, but at least I will not be dodging the sun as much!!

lucky7
06-22-2009, 04:57 PM
WOO HOO !!!!!!! Im so glad for you and your family that it went well!!!!:cute:

Monique89
06-22-2009, 10:40 PM
100 SPF!!!! WOW i didnt even know that existed!!
The highest i have ever had is 30 SPF lol, maybe i need to find some higher ones for summer! Trouble is, im allergic to so many sunscreens, that i have to take that in to consideration also! I think i shall start to be on the look out! After all, last summer we had over a week at 40+ degrees celcius...

Delphinia981
06-23-2009, 10:19 AM
I didn't know it existed, either!! I'm totally going to get some for my beach trip next month!!!! I've just used the 60SPF that I put on my daughter!

So glad you went on your trip. Out of curiosity, what kind of brain surgery did you have? I've had surgery too...mine was to remove a large aneurysm-type growth called an AVM. Fun fun fun...not!! :)

Lovemygirls2
07-02-2009, 03:17 PM
I had what is called posterior fossa decompression. I have a condition called Chiari Malformation. Basically my skull is too small for my brain (or I like to say I just have a big brain!) :) Over my 33 years of life my brain began to herniate down into my spinal column. It (yes my actual brain) was herniated 10 mm which was blocking the flow of spinal fluid, putting pressure on my spine, and my brain stem. So- the surgery- they removed a 3 inch diameter piece of my skull basically to give my brain more room to be (its weird cause I really have like a "soft spot" in the back of my head now- you can feel the missing bone) The NS also opened up the covering of my brain (dura) and sewed in a synthetic patch to also give my brain more breathing room! Sounds crazy- huh??? :) That was 8 months ago!!! So that is the crazy brain surgery I have had! Wild- right!!!

mountaindreamer
07-02-2009, 05:33 PM
damnation girl,

i have never heard of such....how wonderful that they could perform such a delicate surgery. How are you doing now? I can not imagine the fear that you faced during that entire process....what bravery. So glad you have 2 girls to love so much. you deserve every ounce of love that you receive.

i am so glad that you joined our family.

Rastagirl
07-02-2009, 05:38 PM
Oh my goodness...what an amazing surgery! I was cringing while I read the details. eek!

I, for one, am very thankful that we have such incredibly knowledgable and dedicated doctors today that can do these kind of surgeries and repair such major problems in our bodies and allow us to live our lives with our families and loved ones.

I'm glad to hear your's was a success.....scary as it sounds....makes me think you must be one tough and courageous lady! :yup:

Happy for your success!

Fondly,

:cool2: Lori

Lovemygirls2
07-05-2009, 09:28 PM
Thanks so much for the kind words!! I am doing well after my surgery! I had an amazing doctor that was so knowledgable!! It was a blessing from God to find my neurosurgeon! It was actually through a forum similar to this one that I found the amazing surgeon! I have an wonderful family also! My daughters, husband, parents, sister- they all made my speedy recovery possible! I am very thankful!! Now- that problem is solved and I get to figure out a new thing- :nah: But- that's ok! We will get it figured out!! My rheumy appointment is in 2 weeks and maybe something will be figured out! Until then- I pray good days for all of you!!!

Saysusie
07-09-2009, 10:10 AM
Great news and you are so blessed to have found such a skillful and knowledgeable surgeon. I hope that, at you next appointment, you will have even more answers with the promise of effective treatments.

Peace and Blessings
Namaste
Saysusie

lucky7
07-09-2009, 01:51 PM
Oh my goodness, bless your heart. WOW, what an ordeal to go through! ANd it wasnt even that long ago!:no: Im so happy it turned out well for you. Im glad you found us and i hope you are getting the rest that you NEED and DESERVE. Gentle Hugs XXXXX