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r_aquel
03-12-2011, 08:44 PM
So this is my first post..im kinda new to this. lupus really changed my life & these past few months have been the hardest of my life.sometimes i think God is punishing me for the things ive done in my past & for having friends who are bad influences. theres times when i just break down and cry cause of everything thats happened to me. i always ask "why me?" i never thought something like this could happen to me but here i am. my face looks huge thanks to the meds and im constantly losing hair :/ im a teenager in high school so the way i look is kinda a big deal to me. people always ask me why i look the way i do and it makes me feel horrible. then i read peoples personal experiences and i saw how horrible they had it. thats when i realized that im really lucky and it was selfish of me to just worry about how i looked. to be honest i still kinda worry about how i look but i tell myself that i shouldnt give it much importance. everyday i thank God for giving me a 2nd chance

kim,l
03-12-2011, 08:59 PM
welcome to whl i am sorry you are having such a bad time it is hard to get use to especially younger ones you are not selfish you have every right to feel what you are it takes a while to get use to what this disease does to us and the adjustments we need to make but just know we are all here for you and if you need to ask any question or just need to vent we are here for that as well hugs kim l

GoodDog
03-12-2011, 09:09 PM
I'm glad you're here with us, ra_quel and you'll find several other young people that understand. Whatever you feel is legitimate and no matter how insignificant you may think it is you can post it here. It helps to free yourself of the guilt and learn to live with Lupus. I does matter... It ALL matters.

tgal
03-12-2011, 09:47 PM
So this is my first post..im kinda new to this. lupus really changed my life & these past few months have been the hardest of my life.sometimes i think God is punishing me for the things ive done in my past & for having friends who are bad influences. theres times when i just break down and cry cause of everything thats happened to me. i always ask "why me?" i never thought something like this could happen to me but here i am. my face looks huge thanks to the meds and im constantly losing hair :/ im a teenager in high school so the way i look is kinda a big deal to me. people always ask me why i look the way i do and it makes me feel horrible. then i read peoples personal experiences and i saw how horrible they had it. thats when i realized that im really lucky and it was selfish of me to just worry about how i looked. to be honest i still kinda worry about how i look but i tell myself that i shouldnt give it much importance. everyday i thank God for giving me a 2nd chance

Hi Raquel. Welcome to WHL! I am so glad that you decided to join us. As others have said there are several people around your age and they are always looking for someone besides us "old folks" to talk to.

The first thing I want to say is that you are being way too hard on yourself. Of course the way you look matters to you. Heck, it matters to me and I am at least 5 years older than you (ok OK 25). You will find thread after thread of us discussing why we care what others think. We do though. You wouldn't be human if you didn't worry about that. It is something we have to try and get over because stress makes a flare worse and sometimes trying to not look or be different can lead us to do stupid things (I think there is actually a thread where this is being discussed right now).

As for "being punished" I really doubt that. Sadly I see some of the finest people in the world fighting horrible diseases and some of the scum of the earth living until a ripe old age. Although it may not make you feel any better it is just the luck of the draw. We have a couple of choices about how we handle it. The first one is to do the "why me" thing (ohh and believe me we ALL do it from time to time!) or we can decide start understanding our new way of living so we CAN live and not be stuck in a dark room for the rest of our lives.
That is what this place is for. The people here help me when I am having my pity parties. They show me that they understand and then kindly kick my butt and remind me how much I do have. I have a lot of trouble with the sun and florescent lighting. I have been on a pity party for quite awhile because it is like an act of congress to go do anything! Then just last week Susie said "we are a lot like vampires. We only go out at night". YES! I CAN go out I just need to wait until it is a bit later in the evening! Completely changed the way I handle my life! (Thanks Susie).

The point of all of the above is simply to let you know that you are not alone. Nothing that you are feeling is wrong. Lupus does change our lives but that doesn't mean you can't have one. Once again I want to welcome you to the WHL family. We will be here for us whenever you need us. I really look forward to getting to know you!

steve.b
03-12-2011, 10:33 PM
hi raquel,
it never makes any sense at the time.

I have had lupus for over 30 years. only diagnosed for the last 2. then it made sense.

looking back it all makes sense. looking forward it is a journey. you have to live it.

make each moment count. the good is good, the bad is neccessary.

some of my saddest moments, made me the strongest. we are what we make of our choices.

try to find support from friends. we are here to offer some help. find as many friends as you can.

why do so many olympic swimmers have asthma?
they swim to improve there medical condition.
they swim so much they get good.
there weakness, (asthma), showed them there strength, (olympic swimming).

let this weakness help you find the real you.

porchy
03-13-2011, 12:15 AM
Hi sweets......you sound like a very intelligent, very sensitive soul. Welcome to this safe place to be yourself and share whatever you want to share. Don't ever beat yourself up for how you feel. Your feelings are valid, your illness is valid. You have every right to feel what you do. I've been ill for almost 30 years. I started having problems (not just lupus) in my middle 20's and I'm 55 now. I have alot of times that I feel really mad for all I've been through, and all I continue to go through. That's just the way I am. Sometimes you have to keep it inside, because alot of people just don't get it and they never will. But this is a safe place to come, to be who you are and share what you feel.

I am glad that you chose to come and join us. Take care of yourself and be good to yourself. We are all learning how to adapt to our individual illnesses and still have a quality of life. It can be done, it just takes a little wisdom and knowing yourself really well. Something I've finally learned after all these years is when to say "no". I am also learning to say "yes" when I am able to. Sounds simple but even those two little words can make the difference in how I feel emotionally as well as physically. I hope that you are able to listen to your body, hear what it's telling you, and react accordingly. I am still learning that after 30 years. It's a lifelong learning experience. There is a balance, but hopefully you will have lots more "yes's" than "no's" in your young life. Will see ya around ~ glad you are here. xoxo

Peridot20_Gem
03-14-2011, 11:56 AM
So this is my first post..im kinda new to this. lupus really changed my life & these past few months have been the hardest of my life.sometimes i think God is punishing me for the things ive done in my past & for having friends who are bad influences. theres times when i just break down and cry cause of everything thats happened to me. i always ask "why me?" i never thought something like this could happen to me but here i am. my face looks huge thanks to the meds and im constantly losing hair :/ im a teenager in high school so the way i look is kinda a big deal to me. people always ask me why i look the way i do and it makes me feel horrible. then i read peoples personal experiences and i saw how horrible they had it. thats when i realized that im really lucky and it was selfish of me to just worry about how i looked. to be honest i still kinda worry about how i look but i tell myself that i shouldnt give it much importance. everyday i thank God for giving me a 2nd chanceHello r_aquel,
Welcome to the WHL and it's lovely to have you with us.
It may be your first post but that's the one that counts to losing out your feeling's about how your suffering and feeling with Lupus and it goes a long way. We all suffer Lupus in different ways and everyone's appearence is important to them whatever age you are, so i understand where your coming from i'm 42 and try my best to keep my hair right although it loves coming out and my face looks sore half the time with psoriasis.

I've felt like you since i was 18 being punished but could never find the reason behind it.lol because i had seizure's hit me/strokes etc and thought they was all individual illnesses until 3yrs back and was diagnosed with Lupus and also being born with it, so i really sympathize with you at such an early age and a lovely future to look forward to and we all cry because it does drag we down at different times so your not on your own.
It is an hard disease to except, as i'm finding it hard but don't hold in how you feel. Just come on the site and pore your heart out, as there's always someone hear ready to listen.

I look forward to getting to know you.
Hugs Terri xxx