View Full Version : Hello, I'm a new member from Indonesia!
10-28-2008, 11:31 PM
Hello, I had just diagnosed with lupus SLE in March 2008, so still doesn't know how to control this... I had extreme physical transformation here. I lost my hair and I feel so unattractive now. :shock: I don't recognize myself in front of the mirror anymore...
10-29-2008, 03:41 AM
Welcome to the forum. What type of medications are you on for the Lupus? I think that with time your hair will come back in. I had problems with my hair falling out right before I got diagnosed in 1996 and I thought well this is, I will be bald forever, but my hair eventually did come back in. My hair is not as thick as it was, but I have hair now. There are a lot of nice folks that come in here and there will be others that may have more information that will help you out. God Bless.
Welcome! I'm Rob, and I was diagnosed with SLE in 2004. I know it's a scary, and disheartening thing to look into the mirror, and no longer recognize the person looking back at you. When I was first diagnosed I had patches of hair on the back of my head fall out. But the hair eventually grew back.
Learning how to control, and manage your symptoms can take alot of time, and effort, but it can be done. I had to make some drastic changes in my lifestyle to help keep my flares from getting out of hand. It's a daily battle for me. If you look around this site, you'll find that we have members who have lived with Lupus for many, many years, so have hope. Anyway, I just wanted to say hello. Please make yourself at home.
10-30-2008, 07:28 PM
Hi Monkichican :lol:
Welcome to our family! You are not alone with reference to your hair loss. Almost all of us have had to deal with hair loss to some degree. I was almost completely bald by the time my medication started working. As Kathy mentioned, the hair almost always grows back eventually. It may not grow back exactly as it had once been, but it will grow back.
Everyone here is very helpful, caring, informative and supportive. I'm glad that you found us and that you decided to join us :lol:
Peace and Blessings
10-31-2008, 08:09 PM
Hey everybody, thanks for making me to feel better and have hope...
Internet not only able to make you feel better but also could make you freaked out too, on the net somewhere I read that: Lupus is a serious disease but the hope of life for another 10 years is possible.. (what?) it's hard not to be pessimistic.:cry:
Anyway, my medication is prednisone and it is 10 mg and 5 mg every other day, had imuran before but made me anemic so the doctor stopped it and changed it into myfortic (does any of you ever use this?), cryptol, urfamycin 500 mg for antibiotics 4 times a day (i don't know what for?), some vit E for hair, folic acid and furosemide 40 mg (2) for my kidney leakage. My doctor isn't very thoughtful, he is the only professor that specialize in lupus in Jakarta, Indonesia. He was the founder of Indonesian Lupus Fundation. The patients are massive so he's always very tired and rushing the consultation/ control session and just give prescriptions.... while we keep on paying for him and drugs but not fully understanding :(
I've never been to Indonesia, but my father has, and he loves it there. I would love to visit there one day. I live in Maine, it's in the northeastern US, on the Atlantic Ocean. I'm sorry to say the ocean here, is quite a bit colder than the ocean there!
You have been exploring the internet, and learning about Lupus, this is not a bad thing. But, sometimes the internet can scare a person. You ask if life for another ten years is possible? Well, I was diagnosed with SLE five years ago this month, and I am far from being on deaths door. I'm 40, and I am thriving. Yes, I have bad days, but I have some really good ones too, and that's more than enough to motivate me to move on.
We have members here who have lived for many, many years with Lupus, and they are thriving too. Lupus will give you some bad days, sometimes, they are really bad. But that's not the way it always is. It can be managed, and it does not have to rule every day of your life.
As far as medication, I've been on Plaquenil for about two years now. I take it twice a day, though right now I cannot remember the dose. I get my eyes checked on schedule, and have had no problems. I've also been on a Methylprednisolinone IV to treat my overlapping MS. Not much fun there. I also take Naproxen Sodium when needed for inflammation. It can really give you a stomach ache if not taken with food, and in moderation.
Anyway, I'm glad you decided to join our group. Have hope, there's no need to be pessimistic. Be cautious, yes, but pessimistic, no.
11-01-2008, 08:00 AM
I just read your post here and some of the medications that you are on. I am wondering if your doctor thought about putting you on Plaquenil as that is one of the top of the line medications that is used in the United States. Plaquenil is an anti-malarial drug, but for some reason it works very well in the treatment of Lupus to keep the disease from attacking the organs of the body. It helps with fatigue and pain as well. Ask your doctor about maybe putting you on this medication. I have been on it for years since 1996. I am sorry to hear that the Imuran did you like that. I don't know what the other medications are that you are taking. I just thought that I would let you know about the Plaquenil. Oh I forgot to tell you that if he puts you on Plaquenil it takes about 5 months to get the full benefit of the medication in your system. I don't know but maybe with the use of Plaquenil you may even be able to come off of the Prednisone. I just thought that I would post this for you to discuss with your doctor the next time that you see him. God Bless.
11-03-2008, 02:12 AM
Hi Rob and Kathy,
Thanks for your supportive words... I just don't know yet about Lupus. It is still scary to me and I don't know what else worse could come from this disease. I heard some of the worst stories and hoping that it won't happen to me. I had lost all my life and dreams because of this. I was living by myself in New York City, trying to make it and reach my dreams, when I got lupus and everything just slipped out of my hands. I was in the hospital for a week, treatment fro months, massive hospital bills so I had to go back to Indonesia at the end for not able to support myself and live with my parents again.
I lost my life, work, clients ( I am a graphic designer), left my boyfriend and friends, and just have to forget my dreams all at once.
Well that hurts of course, now I also hesitate because working full time was still a bit too much for me, but I love working and that is important for all of us to be exist and got some money.
How are you all with your job? Thanks :)
I lost all my dreams too. I had just finally achieved my dream of starting my own business. I was an engineer in the area of smallarms design. I had 20 employees, large contracts with the Dept of Defense, I had it all.
I had been with my girlfriend for six years, and we were going to get married. Had the ring, and wedding all planned out. After I was diagnosed with SLE, she said she needed a man in her life who has a future, not some broken down guy who will be dead in a couple of years.
99 percent of my friends, stopped calling, stopped coming around. And bang, just like that, everything I ever wanted was finally within reach, and it all just disappeared. Just gone. I can no longer work. I've been on full disability since 2004. I've slowly learned to accept my situation, but it still hurts.
I didn't have to live with my parents, but they did have to help me out financially when I was diagnosed. They are in their 70's, and I should be the one helping, and taking care of them, but thats not how it ended up.
I know how you feel Monkichichan, I really do. Your story is so similar to my own. Just know that you are not alone. Talking about these things can really help. Thanks for telling us your story.
11-05-2008, 02:29 AM
I'm very sorry to hear that. In terms of friends, I was lucky that they are still supporting me and treat me as a person and not pity me or anything. My family was also the best spirit-lifting, mom has been a huge help and all my sisters too. Every time I feel down, my mom told me not to cry and be strong. My boyfriend in New York still and even though I don't know if we will ever have a future together- we almost got married too- but he's still calling and we're still good for now.
I pray a lot after I had lupus, I'm a Buddhist and believe in karma. Maybe God wanted to tell me something... I'm not afraid of death and if my time is short then I will just do good things from now on so in the next life, I'll be reborn better.
I cried when I read your story, it must have been devastating for you. In Indonesia, there's no such thing as disability check so I just have to work freelance for money. Hope that I will be strong enough to work full time someday. Will it possible? I don't know.
If any of you could work like normal people, I want to know your story too...