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View Full Version : Hi, im Raine



Darkhime
04-05-2008, 07:49 PM
Let me tell you guys a little bit about myself. I am 15 years old at the moment and I am diagnosed with SLE. My symptoms first began to show when I was only 12 years old. I had a very high fever, the infamous butterfly rash, joint pains, etc. I also lost a lot of weight and dropped to around 90lbs. For about 3 months I was in that state, I couldn't get up, I felt dizzy, it was awful.
I took several trips to the doctors and they couldnt find out what was wrong with me. So finally we took a trip to the hospital and they ran some tests. I stayed in the hospital for about a week. My family was having a emotional break down (especially my mom :( ). I had to keep telling them I was going to be alright, and I truly did believe that I was going to be fine.
After they found out I had lupus they put me on alot of meds (I forgot the names). They stopped giving me all the meds a year later my hospital stay, the only medicine that i have to keep taking now is plaquenil (its also a very low dose).
Though it sounds like I havent been through much, it was very frightening experience. The worst part of it all was when they had to take a piece of my kidney(i couldnt leave the bed for the whole day, not even to go to the bathroom). I am glad it is all over and all i have to worry about now is waking up every morning to take medicine that tastes like earwax.
I am glad to have found this forum. It is nice to talk to other people who have gone through similar ordeals. I feel like im not alone anymore. :D

Faith
04-06-2008, 12:46 AM
Welcome Darkhme,

I couldn't imagine being so young and having to face so much. It sounds as if you have had to grow up sooner than most. I am glad to hear you are doing well and are on a low dose of plaquenil. How is your family doing now? Better?

Welcome to our family. You will find sympathy, support, understanding, laugher and tears at times. Most importantly, you are never alone. What is your favorite music group? aurthor? My favorite group is Audio Adrenaline which is christian rock. I can even do the air guitar very well without the help of PS3. lol.

Take care,

Faith
8)

sits_inthe_corner
04-06-2008, 01:44 AM
Hello Darkhime

And welcome! I am pleased you have been identified early. I hope it will make a difference in you in the term.

I came up with the butterfly rash when I was 17 or 18. The only thing my doctor at the time said was I would need to keep an eye on that.

But then again I'm 48 yrs old :lol: and back then there wasn't much known about lupus.

At that time I didn't have joint pain but I did have my joints cease up on me. They would just lock and I'd go down like a tone of bricks.

How is the plaquenil working for you?

Darkhime
04-06-2008, 07:07 AM
Welcome Darkhme,

I couldn't imagine being so young and having to face so much. It sounds as if you have had to grow up sooner than most. I am glad to hear you are doing well and are on a low dose of plaquenil. How is your family doing now? Better?

Welcome to our family. You will find sympathy, support, understanding, laugher and tears at times. Most importantly, you are never alone. What is your favorite music group? aurthor? My favorite group is Audio Adrenaline which is christian rock. I can even do the air guitar very well without the help of PS3. lol.

Take care,

Faith
8)
My family is doing much better, thanks for asking :D. Everyone seems so nice here, i am glad to be apart of the family. My favorite music group is Aiden, they rock. My favorite aurthor is Amilea Rhodes.

Shyce
04-06-2008, 07:20 AM
wow, you are really young, but at least you found out early.
:)

everyone here really is nice and there will always be someone available to talk to and explain things.

come back often.

rob
04-06-2008, 07:27 AM
Hi Darkhme,

Welcome! I'd say landing in the hospital, having a kidney biopsy, and being diagnosed with SLE qualifies you for having been through alot. I know for me, when I was diagnosed with SLE I was 36 years old, and I was scared to death. To deal with Lupus at the age of fifteen must take a tremendous amount of courage. You sound like you are handling it very well. You'll find a bunch of understanding and caring people here. I'm glad you found us!

Rob

Darkhime
04-06-2008, 07:29 AM
Hello Darkhime

And welcome! I am pleased you have been identified early. I hope it will make a difference in you in the term.

I came up with the butterfly rash when I was 17 or 18. The only thing my doctor at the time said was I would need to keep an eye on that.

But then again I'm 48 yrs old :lol: and back then there wasn't much known about lupus.

At that time I didn't have joint pain but I did have my joints cease up on me. They would just lock and I'd go down like a tone of bricks.

How is the plaquenil working for you?
Ya, im glad they figured it out early too. Who knows what would have happen if they identified it a week later, I was already in a bad state when I came in the hospital. The plaquenil is working great. My rash went away, no more pains. I feel normal again. I once didnt take it for 3 weeks(not on purpose, i just kept forgetting to take it) and I still felt normal. I am thinking about talking to my specialist about taking me off the plaquenil for a while and see what would happen. :D

Darkhime
04-06-2008, 07:35 AM
Hi Darkhme,

Welcome! I'd say landing in the hospital, having a kidney biopsy, and being diagnosed with SLE qualifies you for having been through alot. I know for me, when I was diagnosed with SLE I was 36 years old, and I was scared to death. To deal with Lupus at the age of fifteen must take a tremendous amount of courage. You sound like you are handling it very well. You'll find a bunch of understanding and caring people here. I'm glad you found us!

Rob
lol, I was trying to remember what that little kidney oporation was called, now its off my mind. Ya, I had to be brave for my whole family (kind of ironic). It doesnt seem that much of a deal now that my life has gone back on track. I am glad I found you guys too.

Pearl
04-06-2008, 07:40 AM
What a brave person you have been at such a young age. I am glad to hear the Plaquenil is working for you. This is a wonderful forum. Make sure you check out the section specifically for teens.

Have a great day being a teenager. You only get to do this to your parents one time! (I know all about it...I have four kids :lol: )

Jana

ColleenT
04-06-2008, 07:43 AM
Hi Raine,

Welcome to our group! So glad to hear you are feeling a whole lot better at the moment.

I'm still quite new to the group as well but in the short time that I've been around I have learnt so much from everyone about lupus and all the other conditions that seem to go with it! Its a fantastic group of friends!

All the best to you
ColleenT

Saysusie
04-06-2008, 11:10 AM
Hi Darkhme;
Just wanted to add my "welcome" to the many that you've already received. I'm glad that you are doing better now and that the Plaquenil is all that you need to take in order to manage your Lupus. Do remember to continue to take the other precautions (stay out of the sun as much as possible, eat a healthy diet, do not over-exert yourself, avoid stress at all costs, do some form of exercise regularly and learn as much about your disease as you can). Now, what you want to do is to avoid any flare-ups and, if you have one, try to ensure that it is not acute one!
We are here to help you in any way that we can. I am so happy that you found us and that you decided to join our family here. Again...Welcome!

Peace and Blessings
Saysusie

Faith
04-06-2008, 01:55 PM
Hi Darkhme,

I haven't heard of Aiden mainly because I listen to a lot of christian rock and ballads. I will have to check them out. Those teenage years, whew they just flew by for me too fast. Enjoy and savor it as much as you can.

I am glad your family is doing better and you are doing so well. Don't forget to take the precautions as Saysusie said.

Take care,

Faith 8)

mnjodette
04-06-2008, 08:26 PM
Hi, Raine...welcome to the 'family!' Lots of good info here - and people who understand. You've been introduced to a pretty serious disease at a very young age! And it sounds like you've handled it incredibly well. I hope you are always able to manage your lupus so well...that would be a great outcome. You'll always need to pay attention to your health, Raine, and keep in contact with your doctors. Oops....I'm sounding like a mom! Sorry! Welcome to the group....

Jody