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Posted 11/24/2008 1:03 AM (GMT 0)

Life and all hopes I've ever had are truly fading. This year i've spent more time in the hospital, emergency room, and doctors offices, than i have at home. My dreams of finally being able to go to college have been crushed due to illness 2x this year which brings the grand total 2 5x. I've been trying 2 get disability but i've been denied 2x already and im awaiting my 3rd denial. Financially i have nothing and am completly dependent upon my parents who struggle themselves. My life now consits of waking up and having 2 talk myself into getting out of bed, forcing myself to eat and take my first dose of medication, praying that it stays down and that my nausea isnt 2 bad, taking more meds throughout the day, and that's it. I'm so financially drained that I can't even afford 2 catch a movie or go bowling when i feel like it. I'm so depressed that 95 percent of the day i'm thinking about death or dying. I've come to believe that if u can't truly live then life isn't worth living. I'm only 21 yrs old and I have to live with this disease everyday until i die, in some shape or form. I'm truly tired of all the meds, treatments, tests, doctor visits, needles, illness, pain, tears, and everything else. I've officially given up and haven't taken any of my meds in almost 3 1/2 weeks now, i know no1 may understand where i'm coming from but i needed 2 try and explain myself  and my decision 2 sum1. I know i may only be hurting myself but i'm just speeding up and inevitable process and to be perfectly honest I welcome the day that it all ends. cry cry cry cry cry cry cry cry cry cry

Posted 11/24/2008 2:35 AM (GMT 0)
Hi Superwoman, I can't and I won't try to get you to change your mind. I will tell you though that there isn't anyone who has been in this group and been sick for any length of time that hasn't felt the same way you do.
You're right it sucks, getting sick, all the pills all the shots all the drs. all the hospitals and ct and mri's and you name it. it just plan sucks! And boy can I relate about being broke all the time. I remember thinking man it sure would be nice if I could even buy a burger off the dollar menu from mcdonalds! Women need stuff, the need hair stuff you young but I need hair color. tweezers razors panty hose. a nice pair of jeans and a blouse once a year maybe.
I've had to move in with my folks before too. I was 50 years old. I'd cried my eyes out. Of course probably not as much as my folks would of if somthing had happened to me. One thing I know for sure is that even if they only had a dime to their name they would give it up if I needed it. Several years ago my brother killed himself. I'm still mad at him. He's not suffering but my family still hurts because of it. My husband died when I was 42 he was the love of my life. I can tell you right now my drs said I will be dead in 2 years. I'm never gonna give up. I'm so worried about the pain it will cause my family. I'll go to every stinkin dr. and get poked with every needle no matter how big it is if it will keep me around one more day. I'm not afraid to die I've seen alot of it and let's face it none of us is getting out of it. But when it happens I want my friends and family to remember me as being dignified I think that will give them some peace.
The only thing I want to tell ya is that nothing ever stays the same. Even if you start with changing your attitude. Like I said I won't try to change your mind but you could try a few things first. like going to a gym even if it's to stick your toes in the water. Maybe you could go to a lawer that deals with ssd? if you have one find a different one. You don't get paid they don't get paid. Most people get turned down the first couple of times. A could fight with SSI makes ya feel good all over. Try getting some counseling. Having someone to talk to helps. it also helps when you go before a judge. I won't keep yacking at ya but I would like to see ya try a little more. realize that if you have gone this long without meds it's long enough to start messing with your head. I don't know if you beleive in God but he listens really good.
Well weather you beleive or not I do and I will be praying for you.
Love Carol
Posted 11/24/2008 2:54 AM (GMT 0)
Please don't give up...things change. Please continue fighting!!! Your not alone((((hugs!!))
Posted 11/24/2008 2:54 AM (GMT 0)
Some hot tea for you Superwoman! Even if you don't drink it, it sure feels good to hold the nice hot cup! You are entitled to mourn the loss of a 'normal' life. That is part of the grieving process. If we pretend there is nothing wrong . . . it is hard to heal, emotionally. Carol (Okie) had some really good advice. I won't try to change your mind either . . . because you need to go through this anger to get to the other side of it and move on. The best thing about coming to this forum every day is learning the beautiful dance that most of the members here do. They've learned how to move through horrendous adversity and still have joy. They've all rubbed off on me and given me a brand new attitude. "I can't always control the waves . . . but I can learn how to surf!!" (unknown author) Thanks you so much for sharing. Because even when we share this hard stuff . . . it helps to put things into perspective. You and others here really help me appreciate all the little things in my life that go so well. Glad you found us!! Blessings!
Posted 11/24/2008 5:40 AM (GMT 0)
Hi Superwoman,

 

I was thinking of you the other day and wondering where you had gone and if we'd hear from you again.  I'm glad we have heard from you.  It sounds like you need some support and understanding friends.  That's why we're here. 

 

I think all of us have struggled with hope and feeling insignifcant and downright depressed.  How could we not?  Lupus is horrible.  No ifs ands or buts about it.  I also went through feelings of complete hopelessness and thoughts of "I'm never going to come out of this.  I'm never going to get better."  It took a year of steady medication, less stress, and a lot of praying to bring me out of it. Many weeks and months of not being able to do the simplest of things.  I felt like a freak.  I also had to move back home with my mom.  I was 26. 

 

But you know what?  I stuck it out.  Life WAS worth living and dreams were worth having. I wanted to live as fully as possible despite my handicaps.  You can do it too.  You're a strong woman with a very intelligent mind.  This too shall pass.  Lupus = Patience.  You can do this. 

 

Like Carol and Rosie, I'm also a Believer. You have a powerful group of people here who can pray for you.  You're getting those prayers tonight.  That you can count on!  I'm glad you opened up to us.  I hope you feel our "cyber hugs" tonight.  Rest well and get ready for tomorrow.

 

Lots of love,

Ginny

 

 

Posted 11/24/2008 5:41 AM (GMT 0)
Hi superwoman, I hope I wasn't being to rought on ya. I just care about everyone here and it's hard to hear someone say they are gonna give up. You're only 21 years only and have so much life ahead of you. Anyway if I offended you I am sorry.
hugs
carol
Posted 11/24/2008 6:42 PM (GMT 0)
Superwoman,

I agree, this disease sucks, mourning the life we once had is normal. The majority if not all of us have had many of the thoughts you have expressed, it's hard not to be depressed when you think back on all the things we once could do. My doctor literally looked at me not too long ago and told me the sooner you start letting go of some of this stress and things you have no control over the sooner medicines and I can start being of benefit to you. I was angry at him at first, but the more I thought of it the more I realized he's right, there are a lot of things I have no control over and stress and negative thoughts just make our disease worse, it's a given fact.

As someone stated why don't you hire a lawyer to assist you with your appeal? They will not get paid unless you are awarded SSD benefits, they will take some of the stress off of you. I am in the process of filing for SSD, after reading all the statistics about getting accepted the first time around I hired a company to assist me, they have a 98% success rate and do not get paid unless I get SSD. The company's name is Allsup, the people are extremely nice and you can do everything over the phone and/or computer, again, they only get paid if you are awarded SSD and they will assist you in getting back SSD as well. Can't hurt to give them a call. Here's the link. http://www.allsup.com/about-Us/Contact-Us.aspx

I have a daughter your age, she will be 21 in December, who deals with severe depression, she tells me quite often she is ready to die, I tell her to please think about those you would leave behind. Think about how sad I would be, my life would never be the same, I'm not sure I could go on without her. We have friends that lost their son to suicide, it is a very sad situation, I remind her of what that family goes through, that always brings her back to reality. So, when you are feeling at your lowest, please think of your parents and what it would do to them. I'm sure it would truly break their heart. After everything they have done for you, do you want to leave them with a broken heart? Life is a beautiful thing, I'm sure your parents love you dearly.

If I can be of any help to you what so ever please don't hesitate to reach out to me, you have my shoulder to lean on, my ear is here to listen when ever you need it. Feel free to email me: [email protected]

Sending warm positive thoughts your way.
Melissa
Posted 11/24/2008 7:05 PM (GMT 0)
Superwoman-I wish I could give you a huge hug right now.  Reading what you had to say about wanting to give up is making me cry-because I've been there before.  I know that Lupus sucks and I've had to give up so many things that I love to do but I've found new things to replace them and the old are just a fond memory.  It's so hard to grieve for the old ways.  Mine is even harder because I lost a baby in Oct 06 and then was diagnosed with Lupus in May 07-2 horrible heartaches so close together.  The thing is, is that I hurt even more now than I did back then.  I think I was in shock for months and now it hurts worse.  But, this isn't about me-its about you.  I just want to tell you that my sister gave up on life 11 years ago.  She was so depressed she took her own life.  I'm at peace with it now, but to look at my parents anytime someone mentions her name or on her birthday or even at holidays, they have the face of a parent who has lost a child.  That's a very daunting and hollow look on people.  I'm sure you're parents love you and would take your place if they could.  I'm positive they would hurt incredibly if something did happen to you.  If you are indeed giving up, I think you may owe it to your parents to talk to them and tell them how you are feeling.  Even if they don't agree-just to make them understand.  So if something does happen to you, they can have a chance at peace. 

 

((((((((((hugs))))))))))

Firebabe

Posted 11/25/2008 6:08 AM (GMT 0)
((((((HUGS))))))

Everyone has given you very good advice. Please try not to look too far ahead -set small goals for yourself and celebrate each and every success! (and there will be success!). Please know that my thoughts and prayers are with you.
Posted Today 9:58 PM (GMT 0)
Hi Superwoman.

I can relate to your sadness and anger. These diseases have a way of doing that to you. I am 24 years old, and I was 18 when all my trouble started. I am the total opposite of you though. I am terrified of death. I'm too young for that, and too strong to give up. I've dealt with so much already, it seems pointless to give up now. I love life, despite the hurdles and hardships. Even though it seems impossible sometimes, I am a firm believer that everything happens for a reason, even though we may never know the reasons,and that God will only give you as much as you can handle. There were times when I thought, "that's crazy, he must think I'm a heck of a lot stronger than I am," but that's not true. I am a heck of a lot stronger than I gave myself credit for. I'm glad I have never given up, and I hope you won't either. I hope you can find a way to feel better soon, without giving up. Please give treatment a chance, and a little time. A lot of people would miss you terribly. Good luck, Superwoman!!!

Posted 11/29/2008 11:39 PM (GMT 0)

Hey Superwoman,

Try to hold on for one more day.  and if that seems too much, hold on for one more hour.  things change.  all of us here, have been there.  and I get that place every now and then.  too much to deal with, but I think of my kids who are my children and grandchildren, and who are still young.  No one needs  to do that to a child.  your parents what would they do?  Who would find your body if you took your life.  what would it look like?  How could your parents cope.  I know for certain that the worst pain in my life has been when my children, grandchioldren, great grandchildren, were hurting.  This is a huge pain you could choose to give to them.  So I changed my plan to be somewhere far away for my family to have to find me.  but for the most part I try to create the perfect suicide, how anybody hurts so badly if I plan to hurt myself.  and there is no such plan created.  everybody hurts if you take your life.  you take yourself out of the picture.  every holiday, people will cry for you.  every day your parents will remember and regret the plan that you may create.

One more hour.  I think I will hold on for one more hour.  and when I do this things always change.  and if I had completed the plan to end my life, I would have regretted it.  no second chances.  please give yourself and your parents and all who love you, a second chance.  even for one more minute.

Hester

Posted 11/30/2008 2:31 AM (GMT 0)
Hi Superwoman:

First off, welcome to our forum. You'll encounter many kinda and caring people here. I truly understand where you're at in the drama of lupus. It's very frustrating to keep fighting and holding onto life.

I've had lupus for 21 years and I've only been treated the past 7 years. I still get the stupid "oh you don't have lupus, but I don't know what you have". I get so fed up daily I really think of ending it all. My lupus is very very bad and while I took one of the meds to treat my lupus, I ended up getting blood cancer from it. It's MDS or "smoldering leukemia", I'm not going to need a bone marrow transplant if I even hope to continue to live longer in my life.

I have lots of family that look to me for support and love. I'm sure you have a family and friends that you mean a whole lot to. You can't give up the fight. You need to fight your utmost to stay with your loved ones as long as you can. I know you're thinking "yeah right, my life totally sucks and I don't get it", I do get it and you've got a lot to look forward to and anything is possible with medical technology these days. You may see a cure for lupus in your life time.

While waiting, try to just take each days an hour at a time. That's what I do, I try not to focus on 20 years from now. I worry about each day and making sure I show my family how much I love them. You can come here and rant and rave all you like. We all have been there and understand your feelings. Please don't give up and grab a hold of the life line that's being offered to you here.

Hugs,
Barbara
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