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the wingless one
04-10-2006, 12:02 AM
Hello, I'm new to the forum (just found it today actually) and after reading through some of the posts I REALLY wish I had looked into online lupus communities before....I've been diagnosed with lupus since January 2005 and have mainly only discussed it with my doctors and my parents (which, as much as I love them, can be a trying experience).

My symptoms before I was diagnosed and put on medication consisted mainly of AWFUL arthritis in almost all my joints (they would take turns swelling up and aching) and feeling exhausted all the time. Since I was only 22 when the symptoms started I ignored them for a long time thinking it was just carpal tunnel (it started in my elbows and wrist) or from dancing and clubbing (when my knees would ache). Anyway, I was really lucky in that when the pain finally got so bad that I DID finally go see a doctor, he happened to be one of the leading rheumatologists in the LA area (I looked him up on the Blue Cross provider-finder website and when I called him I guess I sounded so desperate that he fit me in at 6pm on a Friday night - if that isn't the good Lord at work, I don't know what is =). Long story short, he performed endless blood tests and within two weeks he told me I probably had lupus with kidney involvement.

Now, almost a year and a half later, I'm on prednisone (10mg), plaquenil (forget the dosage, but it's whatever is standard) and cellcept (1000mg twice a day). My symptoms have been largely quieted by the medication, although while I was working I did have more days where my joints would ache mildly - nothing to the degree of what it was before the medication. I'm visiting my parents in the SF Bay Area right now where it's pretty chilly and I've been having some mild pain in my hips and knees which I'm guessing might be from the cold.

Sorry about the long-ness of this post....but what I really wanted to get some advice about is my future plans....Right now I am preparing to go back to school in September for a Master's degree in International Finance. The program I've been invited into involves one semester studying in Paris, France, which is causing my parents to freak out a little bit. They know that lupus can be triggered by stress and they know I have a tendency to get really homesick...they are even more worried right now because I have been engaged and living with my fiance for the last year...they think living in a foreign country away from my fiance, family and friends will be too much for me to handle and will send me into the throes of another flare-up.

Part of me is also worried about this (and also wondering how I will get all my medications in France) but I HATE the idea of giving up something I really want to do out of my fear of having a lupus flare. I know it's a totally legitimate concern for both my parents and me but that only makes the decision that much more difficult to make. As an undergraduate I really wanted to study abroad but never had the chance.

Situations like this is what makes me really despise having a disease like lupus. It's as though even when you feel good you ALWAYS have the specter of a flare-up looming over your head. It's like the proverbial monkey on my back...you know the one that sometimes just sits quietly and looks innocent and other times it beats you over the head with a bat.

So anyway, sorry again for the long post, but if any of you have any input, advice, suggestions or personal experience I'd love to hear it! I'm also really curious as to what the hospitals/doctors in France are like and whether or not I'd be able to get good help there in case I end up going and do (God forbid) get sick.

Thanks in advance =)

Saysusie
04-10-2006, 04:23 PM
Hi Wingless :D

I do not know much about Paris with reference to Lupus. However, in my many researches for this forum, I have found quite a few progressive studies, trials and treatment options that were instituted in France. The most important thing that you should do is to determine what your medical insurance coverage's policy is on treatment out of the country. learn what medical services your health insurance will cover overseas. If your health insurance policy provides coverage outside the United States, REMEMBER to carry both your insurance policy identity card as proof of such insurance and a claim form. Although many health insurance companies will pay "customary and reasonable" hospital costs abroad, very few will pay for your medical evacuation back to the United States. Medical evacuation can easily cost $10,000 and up, depending on your location and medical condition. Then, you need to contact several rheumatologists in Paris and find out what their policy is for treating Americans with american medical insurance. A U. S. consular officer can assist in locating appropriate medical services.
A listing of addresses and telephone numbers of U.S. embassies and consulates abroad is contained in Key Officers of Foreign Service Posts. This publication may be obtained through the Superintendent of Documents, U.S. Government Printing Office, Washington, DC 20402. Also available from the Government Printing Office is Health Information for International Travel by the Centers for Disease Control and Prevention (CDC). This contains a global rundown of disease and immunization advice and other health guidance, including risks in particular countries. The CDC maintains the international travelers hotline at 1-877-FYI-TRIP (1-877-394-8747), an automated faxback service at 1-888-CDC-FAXX (1-888-232-3299) and a home page on the Internet at http://www.cdc.gov.
It is very important for you to establish health care providers prior to going to Paris. For detailed information on physicians abroad, the authoritative reference is The Official ABMS Directory of Board Certified Medical Specialists published for the American Board of Medical Specialists and its certifying member boards. This publication should be available in your local library. U.S. embassies and consulates abroad maintain lists of hospitals and physicians. What I just learned is that many major credit card companies also can provide the names of local doctors and hospitals abroad.
I hope that this information has been helpful to you. I hope that you are able to study in Paris and that your experience is rewarding and that you maintain good health!

Peace and Blessings
Saysusie[/b]

the wingless one
04-11-2006, 11:00 AM
Thanks so much for all the advice...Most of the things you brought up are things that hadn't even crossed my mind, but now that you've pointed them out I definitely see how important they are. So thanks again =) I really really appreciate it.

Saysusie
04-12-2006, 08:19 AM
:lol:
You're most welcome

Saysusie

ihate2shave
06-06-2006, 11:44 AM
You posted in April so don't know if you've decided what to do since then, but I would really encourage you to go! I wanted to study abroad in Europe (was well then) but my family discouraged me and it's one of my regrets in life that I didn't go.

A friend of mine was very ill with sle in high school, she pretty much spent her sophomore year in hospital. (I didn't know her then but she told me when we met 20 yrs. later) She was well enough, barely, to spend one of her college years in England, and that's where she really shook it off and went into remission which has lasted up until the present day. It may have been because there is not much sun in the UK, but I suspect it's also the joy factor... living a dream is always good for our physical well being.

I too live in LA, and am a budding francophile. So if you ever want to email, let me know.. and Good luck!

sharhondaknott
06-25-2006, 08:26 PM
I am getting ready to leave the country for graduate school in London. I am so nervous because the program is very demanding(LSE) but also because I am afraid of getting sick away from home. I was nervous because I put down under that I have Lupus under the disability portion of the application. So far they haven't said anything. Part of the reason I chose London is because students qualify for the National Health Services. So I am actually looking forward to free health care! I am just hoping that I don't flare...

the wingless one
08-02-2006, 09:35 PM
ihate2shave: Thanks for the encouragement =) I have in fact decided to go forward with studying abroad and even though they are still concerned my family has become very supportive now that they know that I am determined to do this. I would love to exchange emails with you since I don't know anyone else in Los Angeles who really understands what I go through with the lupus....Are we allowed to post email addresses? Or AIM screenames?

sharhondaknott: I hope you don't flare either! Hopefully we will both be fine....

Saysusie
08-04-2006, 11:08 AM
sharhondaknott :lol:
I can understand your nervousness about studying abroad. However, it is such a wonderful opportunity, please do not allow your fears to keep you from going and, if you take precautions, take care of yourself, take your medications and make appropriate lifestyle changes, you should be able to do relatively well while there. Try not to let the stress of Lupus overburden an already stressful atmosphere (graduate studies). Your goal is to be in control of both....right :lol:
I wish you the best. I always wanted to study abroad but was never able to do it, so I applaud you for your achievments and wish you success.

Peace and Blessings
Saysusie

ihate2shave
08-04-2006, 10:16 PM
Sure hun, you can send me a private message here. I'm glad your family is supportive, it makes a big difference.

There is stress in college... exams and papers and all. But it's part of life, just another adventure! I think you'll both do wonderfully well. Keep us updated from your respective destinations.