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klucey
07-09-2009, 11:23 AM
Hello Hello!
My name is Katie and I was diagnosed with Lupus three years ago after having a number of obvious symptoms. I had the butterfly rash, joint pain so horrible in my fingers that my roommate had to button my pants, along with fatigue that forced me to sleep during any free time I had. At the time I was playing soccer and was aspiring to play in college. Unfortunately at the end of that years fall season (2006) my legs became so cramped that I could barely run half the length of the field. I was admitted into the hospital two weeks after my last game and was diagnosed with both Lupus and Anti-phospho Lipid Antibody Syndrome (a disease that causes spontaneous clotting, which equals no more soccer). Turned out that the pain in my legs was caused by three clots that had formed throughout the season. I also had a very low blood count and was given IV Steroids in lieu of a blood transfusion. After that I was put on a regimen of steroids that (as many of you know) relieved the joint pain and gave me loads of energy, but left me with a plethora of annoying sides effects-acne, bloating, gallstones etc. My flares since then have manifested themselves in ways different from my original one. On two separate occasions I have had pleuritis and pericarditis (inflammation of heart and lungs).

Now, however, I am feeling great! Which brings me to my next order of business! I am going on a trip to Europe at the beginning of August. I will be backpacking around Southern Italy for 9 days and then will be spending the last three days of my trip in Sweden! I am very excited but also a bit nervous. I have never been there before and am not sure what kind of medical treatment I would be able to receive should I experience a flare. My rheumatologist has already given me a script for a medrol-dose pack(steroid regimen) just in case, but it would be nice to know what the medical industry is like over there if anything more serious happens.
Any other advice for staying healthy overseas is welcome too! Thanks!

Angel Oliver
07-09-2009, 03:45 PM
Hi and welcome and i want to say enjoy!!! Oh how exciting after all you have been through.
Just take it slow,take it all in ,enjoy.Cover up where necessary,sun screen,meds,maybe a hat or a cap. Just you look forward to it and have a really fab time.Its sounds like an amazing trip and you so deserve it.

lots of love Amanda.xxxxx

debbie-b
07-09-2009, 04:55 PM
I also want to wish you a great time. I would learn how to say lupus and all these other words concerning your illness, in italien, just in case. Have fun and be well.

Debbie

Rastagirl
07-09-2009, 06:46 PM
Hello Katie :wavey:

....and welcome to the site. Glad you found us!

You've really been through a tough time in the last 3 years....sorry for such a difficult time of pain and suffering. I've had the pleurisy and pericarditis together, and it is an incredibly painful experience. Each of them alone are painful....both at the same time is pretty excruciating and scary...especially when you can't get any air in your lungs. Sending you gentle hugs... :hug:

I'm truly sorry to hear you had to give up soccer....my daughter has played for 8 years now, and it is her passion. She lives and breathes soccer....right now she is devastated because Manchester United traded the love of her life....Christiano Ronaldo! How dare they!

I was diagnosed with Lupus at age 18...so I completely understand the difficulty of having to give up things you love at a young age, and make adjustments in your life in order to survive. This time I'm sending you gentle, understanding hugs.... :hug: I'm really sorry you had to quit playing.

It's good to hear you're doing much better and learning how to live with Lupus. Especially that you have an exciting trip planned to Europe. I am sooo jealous.....I've wanted to see Italy for quite awhile now. I LOVE italian food and so want to try authentic, REAL Italian food. I hope you have a wonderful time backpacking Italy....and making memories and meeting new people....trying new things....exploring new cities. What a fun time you'll have. Are you backpacking in Sweden too...or are there other plans for that visit?

One suggestion I have medically for your trip...besides the prescription from your doctor for the steroid pack, you might also want to get a printout from him (or his office) of all the meds you are on, with the dosage, and instructions....just in case something comes up and you need to see a doctor over there. It makes it easier for them to write you a prescription....if they can see your own doctors orders. Also, when you pack your prescriptions, my doctor tells me to not put them all in one place, just in case a suitcase gets separated from you. He tells me to put half of each prescription in my carryon and the other half in a purse or suitcase. That way, if one of them gets lost, you won't be completely without your meds.

Oh and be sure to take lots of pictures....we'll all love to see your adventure.

Just wanted to let you know that you've found a place here with plenty of supportive, understanding people that are happy to include you in our WHL family.

Looking forward to hearing more from you soon.....

Fondly,

:cool2: Lori

mountaindreamer
07-09-2009, 06:57 PM
hi katie,

you can see why we all love this forum so much....so many compassionate and knowledgeable members...we are always here.

you received great advice so far, and i have one thing to add. Long flights can cause extreme swelling....this might cause you extra pain, so i would recommend that you use measures to prevent swelling.

have a wonderful time, i am supposed to go to italy in 2010 (but i am not back packing)....please share pictures with us....have a blast, you certainly deserve a good time.

klucey
07-10-2009, 07:18 AM
Thank you so much for your responses and I can tell that this is a great place to come for people with Lupus. I am so happy I finally found a place where I can talk to people who understand what I'm going through. It also makes me feel much better that none of you seem to think that going to Italy will be dangerous and Lori those suggestions about carrying my meds in two different places and documentation of my illness was great. And Debbie I will definitely learn some medical lingo before I go!

dsunshine
07-10-2009, 01:34 PM
Welcome to the site Katie and so glad your doing well and going on a fabulous trip! Sorry you had to endure the pain and side effects but you have come to the right place to find friendship, love and understanding!
Welcome again!

SandyR
07-10-2009, 09:56 PM
Hi Katie! Welcome! Italy sounds awesome! I am planning to one day add their stamp to my passport. One suggestion that I would add is to write down on that list of medications "I have Lupus and Anti-phospho Lipid Antibody Syndrome" in English and Italian and to keep that list with you in your wallet at all times. Can't wait to see your trip pix!

Saysusie
07-12-2009, 11:51 AM
Do you belong to an HMO? If so, make sure that you take your medical card with you. Check your overseas medical insurance coverage: Ask your medical insurance company if your policy applies overseas, and if it covers emergency expenses such as medical evacuation. If it does not, consider supplemental insurance. Also, find out where the medical facilities that honor your HMO will be along your itnerary. If an American citizen becomes seriously ill or injured abroad, a U. S. consular officer can assist in locating medical services and informing family or friends. If necessary, a consular officer can also assist in the transfer of funds from the United States. (Remember, however, that payment of hospital and all expenses is going to be your responsibility.)
For more information, go to http://travel.state.gov/travel/tips/brochures/brochures_1215.html.

Prior to leaving, you might want to register your travel plans with the State Department through a free online service at: https://travelregistration.state.gov.
This will help them to contact you if there is a family emergency in the U.S., or if there is a crisis where you are traveling. In accordance with the Privacy Act, information on your welfare and whereabouts will not be released to others without your express authorization.
Sign passport, and fill in the emergency information: Make sure you have a signed, valid passport, and a visa, if required, and fill in the emergency information page of your passport.

Carry a letter from your doctor describing your medical condition and any prescription medications, including the generic names of your prescribed drugs. Any medications being carried overseas should be left in their original containers and be clearly labeled. You should check with the foreign embassy of the country or countries that you are visiting to make sure any required medications are not considered to be illegal narcotics. (A listing of foreign embassies and consulates in the U.S. is available on the Department of State’s website at http://www.state.gov/s/cpr/rls/dpl/32122.htm. Foreign embassy and consulate contact information can also be found on the Country Specific Information for each country.)

If you have allergies, reactions to certain medications, foods, or insect bites, or other unique medical problems, consider wearing a “medical alert” bracelet. You may also wish to carry a letter from your doctor explaining required treatment should you become ill.

Leave copies of your itinerary and passport data page and visas with family or friends, so you can be contacted in case of an emergency.

Check your overseas medical insurance coverage: Ask your medical insurance company if your policy applies overseas, and if it covers emergency expenses such as medical evacuation. If it does not, consider supplemental insurance.

I hope that this has been helpful to you and I do hope that you enjoy your trip.

Peace and Blessings
Namaste
Saysusie