I can't do it anymore...

[roxykaylee8]

I am so frustrated lately. I just can't take it anymore. I have given up hope. I have given up on God. And I have given up on myself.
Anymore, I don't know what it is like to be normal. I don't know what it is like to be a kid. I don't know what it is like to go to high school, or to be a regular teenager. I do not know what it is like to go to parties or prom.
I have spent the last three years of my life seeing doctor after doctor, having bloos drawn 4 times a week, undergoing MRIs, CAT scans, spinal taps and everyothre test, only to be told the same thing...here is chemo, steroids, pain killers and every other medicine out there. I hate it. It does absolutely nothing for me, except make me more sick. I hardly even eat anymore. And even if I do, I usually end up throwing it back up.
For once, I would like to be a kid. I would like to go to school, and go to the homecoming dance. I would like to know what it feels like to be pain free. I would like to go to bed, and not be afraid to wake up in the morning, for what if tomorrow is worse than today? I want to feel happiness, bliss, and faith. I want to experience life.
I used to be the most outgoing, happy and energetic girl. Now, I am shy, and lifeless. I was a competitive tennis player, in fact, I was nationally ranked. I had a future in professional sports. Now, I can't hardly get out of bed, or walk ten feet without being exhausted. I used to be the smart, pretty, athletic girl. Now, I am not any one of those things. I hate it.
I hate being looked down upon, and having people feel sorry for me. I am so sick of pity. And I am so tired of being treated like glass, as if I am going to break any second.
This has taken everything from me. First it was my body. Now it is everything. I am not the same person I used to be. And honestly, I don't like the new person I have become. I have become cold, scared, and pessimistic. I hate it. I hate me. I hate Lupus. Truthfully, I hate everything.
I wish this would just GO AWAY!!! It is ripping me apart. I am sorry to be whiny, or complain. I just need some guidance. -Kaylee

[T. A. Bossmeier]

Hi Kaylee,

I wish I had a magic wand that I could wave and make everything all better. I wish I had words of wisdom that would make you see things in a better light.

One thing that I do have is the determination not to give in to this disease. I have been fighting it for 30 years or so, many of which were with out help from doctors or anyone else. I have found that what does not kill us makes us stronger. I know that being young and not being able to do everything you want to do is hard but five years from now you will have a whole new outlook and different priorities.

I think it may be advisable for you to get some counciling and if you are not on antidepressants to see if your doctor will give you something to fight the depression. If you were competetive in sports then I know you have the discipline to keep fighting and hanging on. If you have no faith then you truly have no hope. I hope that you will regain your faith and hope and that you will get better physically and mentally soon.

If you need to talk you are welcome to IM me anytime.

Best wishes for better health, TAB style_emoticons/<#EMO_DIR#>/hugbetter.gif

[Christine UK]

<span style="font-family:Comic Sans Ms"><span style="font-size:14pt;line-height:100%">
oh i am so sorry my friend(hugs)
i have had lupus for 29 yres i was dx at 17.....i so know how u feel....we all get this black cloud over us and yes think why the heck me..
You have to remain positive...its what has gotten me through all these yrs..................
i have now come to a stage in my life where i want to come of disability and return to work...i have had so much negative response from people that you just wouldnt beleive it...i have also had some postive feedback from a lot of my lupie buddies...i have let this illness control my life for too long...no more....
its going to be hard i know but i am hoping to work just 2 days a week and rest too...
please keep strong my frined...there is more to life than lupus...and someone once told me ...look around theres always someone worse off than urself... x x x xx </span></span>

[anna from nottingham]

Hi Kaylee

I'm really sorry to hear that you are having a rough time at the moment and that you feel so bad, and dont worry about sounding whiney as i think we all need to do this sometimes and get it off our chest, you shouldnt feel guilty about moaning

i hope things get better for you, i know how you feel about wanting to be able to do everything that other people your age are doing, but im sure if you hang in there they will be able to find the right medication for you and hopefully it will get better,

i was diagnosed over 2 years ago and it is only in recent months that i have been feeling quite a bit better so i think it takes time for the disease to settle down etc.

take care style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

[sue90x]

Oh Kaylee darling, style_emoticons/<#EMO_DIR#>/hugbetter.gif
it does get easier truly, you'll grow stronger, getting the right medication helps an awful lot as do brilliant forums like this one where you can get support and understanding for how bad you're feeling 24hours a day from people who totally understand what you're going through, I recall feeling extremely lonely when I'd been diagnosed at 19, I was told it's very rare and felt I must be the 'only one' I like the rest on here have been through some bad times but generally have come out the 'other side' stronger emotionally for each set back-try your absolute hardest not to let it beat you, its a horrible disease some call it a condition I call it disease because it never eases.
thinking of you sending extra strong warm reassuring love and hugs your way and ALWAYS remember fragile or not you STILL ARE that same intelligent pretty young girl, you'll find her again, shes in there somewhere, trust me, shes just scared to come out at the moment theres too much going on.

sending extra warm reassurring love and hugs your way{{{{{{{OOOO}}}}}}}} style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif
Suex

[suz22]

style_emoticons/<#EMO_DIR#>/whisper.gif Dear Kaylee,
It seems so unfair that you would be stricken at such a young age. I will remember you in my prayers, remember faith is important. I agree that counseling and anti-depressants might help you during this hard time. Try to remember that great strides are being made in the treatment of Lupus and who knows what treatments are right around the corner.
We are very proud of you Kaylee, you are a very special girl!
Your friend, Suzy style_emoticons/<#EMO_DIR#>/foryou.gif

[pauline1946]

You can whine if you want to, but not for to long a period
at a time, so go right ahead and get it all out.
Lupus will not go away, however you will learn to cope
as time goes by.

I'm really sorry you are having such a hard time now.

The good news is God won't ever give up on you.

Tie another knot in you'r rope, and hang on, Lupus
has it's up's, and down's

style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/foryou.gif

FEEL BETTER REAL SOON

style_emoticons/<#EMO_DIR#>/hugbetter.gif

[lilsweety89]

<span style="color:#CC33CC">Hey Kaylee. Your post made me so sad and it reminded me alot of how I felt when I got lupus and how I still feel. There are def. days when I feel exactly what you just wrote. You werent whinning or complaining,you were just saying how you felt and asking for some advice,hallo thats what these boards are for style_emoticons/<#EMO_DIR#>/smile.gif SO first and foremost dont feel like your complaining or whinning ok!
Im really sorry to hear that lupus has made you so tired and that you dont really have any teenage memories like prom and parties. Who says that you cant have any? Are you still in highschool? You can still have those memories and if you cant Im really sorry but you'll be ok , I promise. But you said that you use to be pretty and stuff,who says your not pretty now style_emoticons/<#EMO_DIR#>/blink.gif I know some people with lupus have to go on steriods that make them look diff (me) but it doesnt mean your ugly. And you can get off those steriods or go on a lower dosage which will make u look normal again.
Kaylee I know you feel really down and have given up and there are plenty of times when Ive given up but you cant. There are days when you feel really really down and like you cant go on and your allowed to have those days but you cant give up completely. Do any of your friends know you have lupus? Talking to friends and family can really help out and keeping a journal or goin for walks and listening to music and stuff like that and yoga ,like spritual stuff could really help you out Kaylee style_emoticons/<#EMO_DIR#>/smile.gif I know your sad right now but there will be better days style_emoticons/<#EMO_DIR#>/smile.gif so take care and anytime you need a friend Im here style_emoticons/<#EMO_DIR#>/smile.gif you can pm me style_emoticons/<#EMO_DIR#>/smile.gif take care.
lots of love and all the best
Quai</span>

[lilikeke]

Kaylee,
First let me say that is what i plan on naming my future daughter, if I have one. Next I wanna say I know exactly how u feel. I have only had Lupus for about a year and I too once hated everything, the disease but never myself. I wondered why me? I cried all the time, amd I was in so much pain I couldn't move hardly. I am better now, still in pain every day but I can do normal activities. I no longer wonder why me, (well sometimes I do) but not as much. I am getting better and soon hopefully I will be able to go back to work. So please don't let this disease discourage you or make u feel like u hate urself. Try to learn how to deal with it, and I promise soon you will feel better, you won't be going through this forever. I used to feel like it was never gonna get better and it did. So don't give up hope or faith, if anything faith is what is gonna get u through this. style_emoticons/<#EMO_DIR#>/tongue.gif

[pip]

style_emoticons/<#EMO_DIR#>/wiggle.gif hello . hey lupus sucks hey.i am going onto 26 and i have had it dx since 2004 and i sure don't seem to be getting much better, well it is difficult to measure progress cause it is always something different to battle, one minute it is the muscles , the next joints, then feet..... style_emoticons/<#EMO_DIR#>/hissy1.gif yes , it is all too exhausting.last week i was just past being FED UP but today i am quite fine,still in pain though. i will remember you in my prayers. i really don't know what to say. iwish i could say it will get better but i find it frustrating when people say that to me cause i have been waiting for it to get better for a long time. i guess you don't have much strenght to hold on at the moment but do try to and stay in touch . we are there for you

[connie]

Hello,

I am so sorry, that you are so sad. I wish that there was something that I could do to help you!

Please, don't give up, I Truly do Believe, that God, will be with you & help you.

Oh, Please, hang in there, I am sure that there are so many People, who Love You & this must be breaking their hearts, to watch you Suffer so.

I know I am not much help, but Please,Please, don't give up.

Connie

[angie1]

Hi Kaylee,

I'm so sorry for your pain. I know exactly how you feel. I have had lupus for over 17 years now, and believe me, it does get better. Maybe not the pain and the fatigue and all the c*#p, but dealing with it gets easier. You have to keep positive, and I know that is so hard to do when you feel like the world is closing in on you, but if you have faith and hope that you will get through this, it will get better. I would like to suggest a book that helped me through the first few years of this disease. It's called "A Return to Love" by Marianne Williamson. She is so great and very helpful. Also, "You Can Heal Your Life" by Louise Hay is also very good. Both books helped me so much. I still read lots of inspirational books to keep my faith alive. It helps if you have something to believe in. I'm not talking about religion, but good old fashioned hope. I know you will feel better soon.

Take care,
Angie

[cupertino]

DEAR KAYLEE,
AS A MOTHER MY HEART HURTS FOR YOU. PLEASE FEEL MY HUGGS TO YOU!!
WHEN YOUR SPIRIT CUP FEELS EMPTY IS JUST WHEN YOU WILL LEARN A NEW WAY, LESSON OR STRENGTH! HAVE FAITH IT WILL BECOME FULL AGAIN! I AM 42 AND JUST LEARNED TODAY THAT I MOST LIKELY HAVE LUPUS AND PROBABLY HAVE ,UNDIAGNOSED FOR MANY YEARS!... KEEP COMING HERE FOR SUPPORT. AND PLEASE TALK WITH SOMEONE CLOSE TO YOU ABOUT WHAT IS GOING ON INSIDE YOU RIGHT NOW!!! style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif
HUGGIES FROM CALIFORNIA

style_emoticons/<#EMO_DIR#>/flowers.gif

[cutiegirl132005]

hey kaylee, i know exactly what u are going through except i actually go to school. its gets better after u get used to it. i'm in high school.i was dx when i was 13 in the 8th grade. i hated lupus too and it has also affected me. i used to be outgoig to but now i'm limited to what i can do. the worst part is is that i can go to the beach anymore. and i cant go outside in the day time. that really sucks. i just wan u to know that i'm in the same boat as u are. have faith though it will be ard to and be strong. you'll have ur ups and downs but at least u can live with it

[ASmallReminder]

Don't think on it, this site is built for us all to whine about Lupus it makes us all feel better to know there's somebody else who's going through the same c*#p. I've been in you're shoes my high school years were a constant struggle. But nobody knew what was wrong with me I was constantly in and out of doctors who were telling me I was just making it all up for attention. Proved them wrong eh. But I figured I could sit around suffering or I could pull myself together and stop watching my friends have fun without me, they all said they understood but they didn't nobody who doesn't have this disease could ever understand. I finally got so sick of feeling bad for myself that I pulled myself out of bed one day and went on with life, I could sit home in pain or be out with my friends enjoying what was left of high school in pain. I think getting up was the one thing that got me to where I am today. I know it's easier said then done but don't let this disease own your life, you have to force yourself to overcome it and be strong.

I hope you can work through this, I'll be honest it never does get easier but don't let the lupus win. Kick the **** out of it. style_emoticons/<#EMO_DIR#>/biggrin.gif If you ever need to talk, we're always here.

[MDkidneythief]

I'm so sorry girly! I know how you feel though. I was nationaly ranked in softball when I was in high school four years ago. I was a pitcher and I was being scouted for full ride scholorships to many different schools. Life was looking good. I had a boyfriend, my grades were awesome and softball, volleyball and basketball where so fun! Then I got hit, hit hard by lupus. I've been sick ever since. I can hardly walk now let alone play sports. I see people every day use their energy like it was nothing...running jumping playing...laughing..I wish that was me. I wish I could do those things again. My body is frail and broken but not my spirit! I've learned that I can still make a name for my self in the world. I've learned to outlet my anger and sadness in writting and painting. Maybe all you need is a good friend or boy friend to tell you what a great person you are and to help you through. I used to pride myself on being strong and doing eveything for myself, but I got over that, let pepole help you let them take your hand and lift you up! you will live and prosper with your own strong will to survie and the love and compassion of others! I believe that you can and will be fine!!! hang in there I know its rough but even the worst of storms will pass.....if you ever need to talk I and many others here would be more then happy to help you along..don't ever give up!!! if you do then Lupus wins! don't let is beat you!!!!

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[SueC]

<span style="color:#006600">Dear Kaylee style_emoticons/<#EMO_DIR#>/flowers.gif

I was diagnosed with lupus while I was in 8th Standard (tht'd be 9th grade in US), the start of my highschool years. I felt down and alone just like you do now. But I taught myself to forget abt it and get up again to be as fun and energetic as I used to be before being diagnosed and hospitalised. The moment I decided to fight for myself was the day that I got everything back up and running as it had always been.

So, I do understand how you feel right now. I asked myself the same questions that you asked. I felt the same way (EXACTLY the same) as you do. But I didn't wanna give up, no, not at all, not in a zillion years. After all, nothing is my fault or happened so by some wrong-doing of mine. So, I believed there's a reason for this and I had faith in believing what I could do and I would do. And most of all, I had faith in myself. I passed highschool just like my frnds. I did get to face those strange wondering looks from others, ofcoz'. But I stood up to those looks and even when they had no respect for others' feelings and askd me abt it, I managed to give them answers. I hated them! The worst of all, I was diagnosed with SLE so I had the butterfly rashes on my face and there was a time I felt so unfit bcoz' of those. My frnds didn't even recognise me the first day I went back to school. But I had my frnds and they were very supportive. That's how I passed my highschool years.

So, I think I can surely say...I know you could do this. I know you could have fun again. Ofcourse, there are limitations to many things that you can do, but there is always the other way around. You just have to find tht way. for eg; when you want to walk with your friends, then you could. Just put on some sun screen and take an umbrella. I do that all the time, when I go shopping. (Sometimes it does outdate my style though:cry: ) And I had to take 4 pills of prednisolone once, 4 times per day when I was diagnosed and I got fat (totally fat). But as the dosage was lessen, I could restore bck my usual weight. Well, not so fast but as soon as the prednisolone is tailed down. So yeap, don't worry for your looks! style_emoticons/<#EMO_DIR#>/goodvibes.gif everyth will be bck to normal soon after.

And I was a highschool selection at township level in badminton. That year was my first year in state championship game. I was all over the school events and was quite an active gal before SLE invaded my life. style_emoticons/<#EMO_DIR#>/ermm.gif I had plans for strategies and games in the years after , but I couldn't play it and never since then. I'm not gonna lie. I was miserable coz' I was used to being active and I couldn't bear much of it then. So, I changed the direction of my unused energies. I used them in reading. It was a big change in my life. Coz' I never liked reading much and I was more of a playful whteva type of girl. I was (and still am) glad for that change. It turned me into a whole new different person. I've got a lot of different views now and to be honest, the change really turned my life around, in a good way. style_emoticons/<#EMO_DIR#>/smile.gif So, there's a profit tht I got from lupus. style_emoticons/<#EMO_DIR#>/laugh.gif

So, all I wanna say is. Just believe in yourself and have faith and that everyth will be alright. style_emoticons/<#EMO_DIR#>/wink.gif


with much love n understanding....
Sue
style_emoticons/<#EMO_DIR#>/foryou.gif </span>

[joyce21]

hi: i have been there and i know how you feel but please hear me when i say we can beat this. i gave up in 2003 i was so tired of being sick. but someone like myself talk to me and gave me a reason to work just a littke harder, do you know that we are special. i wish that i could take all this away from you and give you the hope that you need , but you do have it , it is right there in your heart. dnt; never be sorry and never stop complaining scream as loud as you can let the world know how you feel. dn;t hate yourself hate what happen to you i hate what happen to me. i feel that one day we will all be better and i will keep you in my prays. i scream every chance i get my family think i am crazy. i tell them all the time inot crazy i have lupus:... it has slow me down a lot my life change at 38 yrs old and i am 41 yrs old ... my heart and kiddneys will never be the same and there are things i will never be able to do /// one thing that i regret is that i never had a baby, and now i can not have a baby... so keep your sprits up and dnt; let it rip you apart. when ever i am down i listen to christiana agulair i am beatufull , please listen to the song you will feel so much better i promise.

[RachelSut]

I thinks almost everything's been said by other but your post really touched me. I've been sick for 5 years (i'm 28) but only had a proper dx for 6 mths. I know how hard it is and how often you run out of the positive energy to keep going. At theses times you need lots of hugs and TLC so here is a big hug from me style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

Love Rachel

[pammie]

kaylee,

i am 21 my self and maybe shouldnt be in this forum, but i couldnt not reply after your message. its a horrible thing to have-lupus we all no that. but the truth is we have to get on with life, the life god has given to us. i was only 15 when first diagnosed. so i have had the best years of my life ruined. BUT one thing it has done is bought out a really nice part of me, the good in me you could say. this may not be very comforting to here but give it time. Time, knowledge about this condition, love, support is what you need. look at the simpler things in life. you can still have a laugh with your friends but when the disease is controllled. look forward to feeling better. dont let lupus ruin you. lets beat it together.
pam

[Divyya]

hey roxy.
This is DIvyya. Im from India. See..i totally understand what u feel. I was diagnosed with when I was 16...I went to college..and screwed up an exam coz I wasnt well..I have developed AVN of the hip at 18which completely ruins any scope of me dancing again..I was dancing professionally as well..also I had to switch colleges and come back home to study...I was on crutches for 3 months etc etc..
I know its tough..I was in hospital for 6-7 months too. I had chemo too...Im on steroids too. If I can do it...so can u.
YOu cant let it get to you. YOu really cant. You got to fight it. Dont pay so much heed to it. It happened, it happened. No point not doing anything about it. SO what fdo u do? You live normally. Eat your food, hav eyour medication, sleep on time so ur rested...and besides that just have a good life. Initially, I couldnt stand being restricted. Im a party person and I like to not waste my time and do something with my life. I knew that the only person that could make me feel better was me. SO thats what I did. I put my foot down. Just be patient. Live a normal life and do what ur supposed to..believe me...its just time..time will heal and youll be able to do everything u want...
At my prom night...I was 40 punds heavier...coz of my steroids..I hated it..everyone plans thier prom night and wants to look thier best. I did too..but I coudnt..but I went. I went and I danced..I was tired..but I danced and had a good time. As normal as u can be..even if u have to push yourself a little...it takes that much if u have a disease that ur fighting...
TOday..im much much better. Im actually vacationing in Dubai..!! I put on my sunblock..wear covering clothes..take my medicatoin... and yes push my self a little bit to lead a normal life. I didnt give one exam last semester coz i was in hospital...but no big deal...Ill work around it and make up for it.
YOu've got to have that attitude girl. YOu've got to take it easy and make it happen for u.Its all about how u see it...see what u want of it...and it will happen..
When i was diagnosed. IT was like a shock. Im probably the most energetic person alive!!!!- when i fell ill...I wasnt myself..and it took time...but i was patient...i lost faith.. i cursed..i cried...mostly coz I couldnt dance or horseride!! but it's happenning slowly...my life is as normal as anyone else's with a little restriction like the sun,dancing etc...but its ok...nothing that kills me..and so will yours be..you'll be going out and chilling with your friends...you'll go for the other dancfes....so what if u missed one..big deal dude!!- go on...go out there and fight it...dont lose yourself... lose the fear of the disease..its just a disease. it doesnt get u..u get it.
Mail me whenever u want..ok?? Take care of yourself-your're about my age..so I get what ur talking about..
Big Hug
love,
Divyya

[pauline1946]

way to go Pammie. Lets all beat it togeather.

such wisdom from such a young girl.
:)

[erika_huey]

hey there...
yes..it's a very terrible moment that u have to go through...i know mine is nothing compared to yours....i've been diagnosed with SLE last december...my condition was soo much more better now but everything takes time....i just hope u can be positive and be happy...cos being happy is the best cure to everything! its true....stay positive and happy....alright? :)

we'll always be here for u

erika

[jerjer]

hey -i understand where your coming from...it's a hard place to be and especially hard to accept i think when you are so young...don't give up your hope or your faith...i know it's difficult...i have had lupus since i was 16. it made teenage life harder, but just to give you hope, know that i am now 42 and have 3 kids and am still fairly active...i have good and bad days but just know that having this disease does not mean life cant be good anymore...if you are on steroids that change your apprearance, it is not forever...when it starts to get under control and your doc works you slowly off the steroids, you won't have to diet, the weight (fluid) just drops off slowly and eventually you will like your appearance again...I KNOW, I was 53lbs bigger, but when i worked down on the predinisone it all came off...
I will keep you in my prayers and remember that your lupus could possibly go in to remission or at least get much better...there is always hope...please don't give on your hope or God....its ok to be angry or frustrated...its normal...sometimes it helps to let it out...if you need to talk...im here.:)