PDA

View Full Version : Diagnosed as a baby, now 24 but I feel 60 : (



Pinkstarzz511
06-23-2006, 02:03 PM
Hello out there to any one who would like to take a moment to talk with me. I'm 24 years old and I live in southern Ca. I was diagnosed with Lupus when I was 1 1/2 years old. Up until recently, I have always lived a very active lifestyle and never ever let my disease get the best of me. I thought I would be able to trick my mind into thinking I was well. In the last four to five months...I have been hospitalized twice. The most recent hospitalization brought me near death with white blood cell counts of less than 1800. I don't quite know where this illness is going to lead me and I'm terrified. I have a four year old girl and she means the world to me. I want to do everything in my power to make sure that she grows up with a happy and healthy mom. I have so many questions regarding the complexity of this illness but more importantly, I would really like to find some one in my age group, with the same stipulations, that is also dealing with the medications, the fatigue and the moodiness. I've recently been placed on 20mg of prednisone three times a day, along with three different antibiotics. The predsnisone will be reduced as months progress and so far I have not had any weight gain, but I feel as though I can't take a moment to sit down and relax. Strange, yes. A response from any one right now would be incredibly uplifting, and I would really like to find other girls my age can relate. My love goes out to all of you out there who are dealing with this disease and I hope that we all can one day living a happier and more comfortable life.

pinkjmf
06-23-2006, 02:39 PM
I feel for you.I understand the same feelings that you are having,although I am a little older than you -36 .We all have the same wants and needs for our children and hopes and dreams for our lives. We are here for you and I pray that all the antibiotics would help.You will have a group of friends here to help.

stjames13
06-24-2006, 07:40 AM
8)
HEY PINK STARS

HI How are ya feeling today? GOOD I HOPE !!!!

First of all let me tell you what you are going through now is 99% due to the fact that the LUPUS had the time to go undetected for possibly years and un treated it had the time to get a good grip inside your system and pretty much take over.

NO you will NOT feel like this all the time.....you're feeling so DOWN because the LUPUS HAD taken control of your system and now that you're finally getting treatment it will take awhile to get it under some control and then you will have your life back, BUT IT NEEDS YOU to be posotive and to fight back.

Once your mind and body become somewhat normal you too will begin to feel like yourself again,but REMEMBER it CAN and WILL flair up if you do not follow your treatment plan and take care of yourself !!!!

LUPUS is ths strangest of all diseases that must be out there.....one day you feel fine the next day you're on the couch out of gas and exhausted.

You will learn in time how to manage those TEMPORARY relapses and get it into remisssion, but once it is in remission YOU MUST TAKE CARE OF YOU !!!!!
That means everything from what you eat to how you take care of your MIND !!!!!!

A strong MIND is THE BEST MEDECINE !!!!!!
You CAN NOT allow this disease to take over your MIND as it has with your body.
IF you keep your MIND strong your body will follow, but that does not mean it will go away.....I have never heard of it just going away.

But you can keep it away between being good to yourself , from your diet to your meds, to following the rules of what NOT to do.
IN saying all that if you keep yourself UN-STRESSED your chances of NOT relapsing are greater than your chances of relapsing.

YOU CAN NOT ALLOW THIS DISEASE TO TAKE OVER YOU MIND AND THINKING !!!!
WE all know it can take over our bodies and what comes with that.....but there has been NO PROOF that it does anything to our MINDS PHYSICALLY OR MENTALLY (in a permanent way)

Sure it bumbs us out, depresses us and all the usual things that come with any potential deadly disease....but the OPERATIVE WORD IS POTENTIAL, though we have lost some beautifull people over the years to this disease there are THOUSANDS who live a generall normal life once they get it under control and decide that THEY ARE GOING TO BE IN CONTROL OF THE DISEASE INSTEAD OF THE DISEASE CONTROLLING US.

SO please I know right now you're feeling very down and all this can be so overwhelming....but just remember that you too can and will have a fairly normal life once your doctors get things under control and get you into remission....after that it is YOUR job to keep it there and THEN you will have your life back !!!!!

Give the treatment time to do it's job.....I know it seems like forever when you feel like crap, but I PROMISE YOU that soon you will be back to yourself soon and then all this will just be a blur.

I HOPE THIS HELPS AND THAT YOU CAN BEGIN TO GET ON THE ROAD TO REMISSION AS SOON AS POSSIBLE AND GET BACK TO ENJOYING YOUR LIFE !!!!

St James 8)

atedj
06-24-2006, 06:12 PM
Hello there! Boy do I know what you are going through. I'm barely 25 with two little kids: a boy that's 3 and 1/2 and a little girl that just turned 2. The difference between you and me is that I was just diagnosed in April 2006, so this is all pretty new to me still. But I totally understand what you are going through: the days when you just can't seem to get up and take care of your kids, feeling exhausted from doing little things (like getting the mail!), trying to stay positive eventhough you feel like you aren't being the mom you should be. It's so hard. But know that there are others out there that can relate. That's why I love this site. I visit it daily because there isn't anyone around me that can TRULY understand. My husband is wonderful, but he'll never get it. So if you would like to exchange E-mail addresses or something, I'd love for someone my age to talk to sometimes, too. Sometimes I feel like I just really need a friend, you know?
Anyway, hope you are having a good day today. Take care!
Angie

ButterflyRN
06-25-2006, 06:17 PM
Hi Pinkstarzz! I'm 27 and have been diagnosed with SLE since I was 11. While I do not have any children yet (we are in the process of adopting), I understand all about the meds!! I'm on 30 mg of prednisone a day which has been coming down over time but it's been a couple of months on 30mg and I'm stuck on that until the end of July. I've gained weight unfortunately with a nice round moon face and it makes me pretty upset especially since I've always been so skinny. I only put on 25 lbs and not that I'm fat, but I know that I've gained weight and it bothers me. I hate seeing pictures of myself since I've been on the increased dosage of Prednisone. My recent flare had made me cut back my hours of working and it's taken me quite a while to get back to feeling better. Regardless of age we are all here for you, but I understand wanting to talk to others who are close to your age. I hope you start feeling better soon and you'll be in my prayers!! Write anytime!- Butterfly

christie05
09-01-2006, 09:40 PM
Hi Pinkstarzz! I'm 22 and I first started showing symptoms of SLE when I was 5, I was officially diagnosed at 7. I don't have any children, but I totally understand everything else you're going through. My SLE has been pretty active that entire time, but more recently I've been experiencing more problems (I've spent a lot of time in the hospital this summer). I've also been on prednisone since I was 5, but my rheumatologist is reducing it so I can be off, since it's doing much more harm than good anymore. I'm on a hefty amount of immunosuppressants (both imuran and cellcept) and if the lupus decides it wants to continue to be an annoyance, I believe cytoxan is the next step (I've been on that in the past too).

It's unfortunate that we have to worry so much about how lupus effects our everyday lives. I haven't really talked to anybody who has been been diagnosed with childhood lupus, in fact everyone I've ever met or talked to hasn't had lupus nearly as long as I have. If you're interested, I would love to exchange email addys or screen-names. It's always good to have someone who knows what you're going through to rant to!

~ Christie

dizzy
09-08-2006, 04:30 PM
St James, wanna come live at my house?? if you lived with me and you gave that talk each morning when i wake up i know i could make it through the day! your positive attitude is amazing and if PMA is anything to go by you must truly be in control of your condition! i hope that with time i can build to half the determination that you have i know i will be fine, perhaps you could bottle it and sell it or maybe make tapes that people can buy to go off when their alarms go off - it ought to be the first thing we al hear in the morning :)

thank you for my wake up call hun
hugs
dizzy
xxx