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Mar12
02-07-2013, 03:06 PM
My Name is Marlene, I am 23 years old and I have Lupus!I live in Southern California and was diagnosed when I was 12 years old and have been battling it ever since.

I have my up's and down's like everyone suffering this painful disease, I have a very supportive family and friends but they just dont understand how I feel and probably never will.

I was under remission for 10 years, I was fine living a semi-normal life, working 2 jobs, going to school and socializing...it wasn't until a few years ago when everything started to go down hill, I had flare ups on a daily basis and still do...my hands and knees swell with throbbing pain, my fingers look like sausages ready to explode, my back aches as if a ton of bricks had fallen on me, my wrists bruise up as if someone had squeezed them with force... In other words I feel like a 90 year old women trapped in a 23 year old's body...

That's just a little bit of my life story... Ive been feeling a little depressed so ive been doing some research on ways i can help myself fight this never ending illness...that's how i came across this website and It makes me feel alot better to know that there is other people out there that can understand my pain and frustration...

steve.b
02-08-2013, 12:47 AM
hi marlene,
sorry you have had this from such a young age.
glad you found remmision for a few years.

please feel free to join in on threads where you feel comfortable.

now you are here..... you are never alone again.

Mar12
02-08-2013, 10:13 AM
Thanks Steve I feel very welcomed already :)

chikititalinda
02-08-2013, 11:07 AM
Oh my goodnes so you were twelve when you were diagnosed. You are so young hun, I'm sorry you have to deal with this monster especially at such a young age. Welcome. There are some awesome very warm and knowledgable people here. Stay around you'll learn alot.

debbie-b
02-08-2013, 12:35 PM
Hi Mar,

Welcome to WHL.
I am sorry, that you are having such a hard time at the moment.
All or most of us are going through the same thing, so just know, you are not alone. We are here for you.
I was diagnosed a little over six years ago, I have not been in any kind of remission, but I do have a few good days, which I always look foreward to, when I am having my bad days.
Luckely, I have never had to deal with depression, but I do have days, where I say " enough is enough, I can't handle this pain anymore".
You are lucky to have a family that is supportive, alot of people don't. I do and I am very thankful for that, because if I didn't, things would be alot worse. But you are right, no matter how understanding your loved ones are, they don't ( can't) know, what we are facing on a daily basis.
Consider yourself lucky, to have found this site, I do, because my friends ( cyber family) here, has helped me alot.
What kind of meds are you on?
I was dx with Lupus SLE, RA and Sjogrens.

Debbie

jmail
02-08-2013, 03:41 PM
Hi there Marlene Mar12, and another welcome to WHL to you from here... you say you're a 23 year old in a 90 year old body - and I thought *I* was feeling rotten as a 56 year old in an 86 year old's body... lol - Ouch! I know what you mean, tho!

tgal
02-08-2013, 04:43 PM
Hello there! Welcome to our WHL family!

i am so sorry that you are going through such a rough time but I am very glad that you found us! Please make yourself at home and I look forward to getting to know you

Mar12
02-08-2013, 04:55 PM
Thank you guys very much, I defiantly feel apart of the family already...

I am a Veteran to this Lupus Monster, I am so use to the pain, I dont even bother to complain about it, I had to learn at a very young age how to handle such thing but god is good and he has helped me along this never ending journey..

.My body feels weak but my Heart feels so strong specially know that i can chat with people that understand me!!

rob
02-08-2013, 05:17 PM
My Name is Marlene, I am 23 years old and I have Lupus!I live in Southern California and was diagnosed when I was 12 years old and have been battling it ever since.

I have my up's and down's like everyone suffering this painful disease, I have a very supportive family and friends but they just dont understand how I feel and probably never will.

I was under remission for 10 years, I was fine living a semi-normal life, working 2 jobs, going to school and socializing...it wasn't until a few years ago when everything started to go down hill, I had flare ups on a daily basis and still do...my hands and knees swell with throbbing pain, my fingers look like sausages ready to explode, my back aches as if a ton of bricks had fallen on me, my wrists bruise up as if someone had squeezed them with force... In other words I feel like a 90 year old women trapped in a 23 year old's body...

That's just a little bit of my life story... Ive been feeling a little depressed so ive been doing some research on ways i can help myself fight this never ending illness...that's how i came across this website and It makes me feel alot better to know that there is other people out there that can understand my pain and frustration...

Hello Marlene,

Welcome to WHL. Thank you for sharing some of your story with us. I was diagnosed with SLE nearly ten years ago. I'm 45 now. I had the benefit of being an adult with some life experience when I found out that I have Lupus. It was one of the most difficult experiences of my life.

I cannot imagine what it would have been like to get that diagnosis when I was only 12 years old. I'm sorry you are feeling depressed, but I have to say that in this first post of yours the thing that stands out is not depression, but courage.

Welcome to our group, and please make yourself at home.

Rob

SleepyInSeattle
02-08-2013, 05:22 PM
Welcome! This is a great place - I have found tons of information and support here - hope you do too!

SNR
02-08-2013, 06:13 PM
I'm right there with you!!! I [B]COMPLETELY understand!! I am on antidepressants (along with a ton of other meds) but I STILL battle depression from time to time. I am new to WHL too & am here when you need a shoulder!!

ButterflyRN
02-09-2013, 06:43 AM
You and I are very similar in disease history! I was 11 when diagnosed now 34 and had a period of remission for 9 years now flares every 2 years practically!

SNR
02-12-2013, 03:34 PM
Hi Marlene!! I feel the EXACT same way as you do. I came across this wonderful site last week when I had to leave work because my depression got the best of me. It was nice to have a place where you can talk about lupus and everyone REALLY does understand!!

Mar12
02-14-2013, 05:06 PM
Rob, you are so right!! Courage is Key!! I am a strong believer that the pain and flare ups can be all just mental, and you cant let it get to you...

I have been reading this book called, "Despite Lupus" its a really good book, I recommend it to everyone to read the author really does a good job in expressing her emotions, it has helped me gain my mental strength back and i am starting to feel better about myself and excited for life again...and I am even happier now with all of you here to support...Once again thank you all