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im ready to just give up, lupus sux!

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Posted 1/27/2010 12:55 AM (GMT 0)
Hello everyone im bekkah, im age 15 and 5 years ago i was diagnosed wiht lupus and JRA, at age 10 it was very bad and ive been through quite a bit in just these short 5 years. I now over those 5 years have been taking 12 pills every night and 5 in the morning. I also have had rituxan done, and high steriod treatments. I was on an all-star soccer team thats travel across the country and was on the first place national team. I continued to play till i was in 7th grade and thats when everything went wrong. i became very ill and there was nothing to do but a steriod treatment in the hospital. When this happened i ended up codeing twice and now have what is called coversion disorder. if that wasnt bad enough i was also diagnosed with shrinking lung syndrome. ive been through so much much and now starting this year with highschool doesnt help matters with school work. well ive enetered thrid grading period and i have missed 38 days so far out of 115 some days. I then went in to the doctors saying i was in pain with my kidneys. they did a kidney biospy and i now i have lupus nephritis in both kidneys. nothing is going right and im just ready to give up. ive never been one to give up, but highschool stress and the work i have to do to keep my grades up. to keep my friends and atleast make it through one week of school is incredidbly hard. i just need some support advice because im 15 and ready to give up and i still have my whole life to live. Ive never been so sad and down in my life and i need someone who understands what im going through to talk to me.
Posted 1/27/2010 1:16 AM (GMT 0)
Sending prayers for you Bekkah. God bless your sweet heart to be going through so much at so young an age. I'm 40, so I just can't imagine what this must be like for you. I do however have two small boys age 7 and 2 and I can't say how many times I've wished that I was able to more and be more for them and my husband as well. Let's all hope and pray that the cure or much better treatment is on the horizon.
Posted 1/27/2010 2:00 AM (GMT 0)
Bekkah,
Hey girl! I'm sorry you are facing this horrible disease. I have lupus nephritis too. Trust me, things can get better, just hang on!! I was in end stage kidney disease, on dialysis and needing a transplant and now i'm off dialysis and doing sooooo much better! I have had many life threatening situations and was ready to give up too, but if you just find a way to hold on...things can turn around.

It is a chronic, incurable disease. But, there will be "up" times when things aren't this bad. Have you joined a support group in your area? Have you talked to a school counselor about Lupus and how it is affecting you academically? Educate yourself and the people around you! Ask your teachers, friends, principal, coach what they know about lupus. Help them understand so they can better serve your needs...that's what they are there for! Do you have a school nurse? Make sure she's aware of your diagnosis and what meds you are taking. Make arrangements with her/him and a counselor to be provided a quiet place to rest when necessary.

I think if you become proactive by educating yourself and those around you; you will start to feel a little more in control and it will expand your support system! If you are truly feeling overwhelmed, mention it to your doc and maybe he can suggest a counselor or a clergymen that you can confide in.

I am praying for you. You are strong. You are an athlete. You ARE STILL BEKKAH and you can do this girl!!! You show lupus who is boss!!! God BLess and keep you lil sister! Judy

p.s.- I used to be a school nurse...if attending class everyday isn't a good option at this time there are channels to go through and a tutor can be sent to your house.  Ask your parents to check into it for you.

Post Edited (MJLD) : 1/26/2010 7:03:15 PM (GMT-7)

Posted 1/27/2010 2:05 AM (GMT 0)
Bekk...Oh my... so young to have all that going on in your body... I am sending my support to you and will say extra prayers that your life will soon be better.... Be strong... come here often and let us know how you are doing.... Hugs to you... take care....
Posted 1/27/2010 3:08 AM (GMT 0)
Bekkah,

Obviously you are a very strong and talented young lady to have dealt with so many complications so young, and to reach out on here to ask for help. These are situations that are extremely taxing for all off us, and finding a solution or way of life that works for each of us individually is certainly complicated.

I agree with the others who have suggested to talk you your school, your parents, and your doctors with your concerns. I know it's harder to talk to people 'with skin on' than it is online, but it's important that you pick someone and start talking. The person you talk to first might not know of resources to help you, but maybe they can suggest someone or something you can talk to or do next.

You may have already done a lot of those things - have you asked at your local hospital if they have support groups for others your age who have chronic illness? The other teens may have a different disease, but the struggles are the same. People may even discourage you, but find the people who treat cystic fibrosis or something like that - they'll understand your specific challenges.

Or, just keep on talking to us. We've had to deal with the same issues - some of us have been in college or grad school, some of us have had to leave jobs or shut down businesses. We do have a handful of teen members, although some folks I haven't seen in a while.

Keep in touch, and welcome to Healing Well!

ps. yes, lupus sucks!!!!
Posted 1/27/2010 3:26 AM (GMT 0)
I am so sorry you are going through all of this so young. I think you should ask about tutoring from home so that you can focus on getting better instead of fighting your body to go to school. You definately should be talking to someone about what is happening with you, therapy helps a lot believe me. A support group would be nice but isn't always possible so at the very least get your parents to take you to a therapist who specializes in chronic illness or teenagers preferably both. Know that we will be here for you whenever you need to vent.
Posted 1/27/2010 7:35 AM (GMT 0)
Hi Bekkah,
Wow! You are awesome! You are 15 years old and you have lived a lot of life in those 15 years...really great, fun stuff like travel soccer team at the national level to a diagnosis at age 10 with two really crappy diseases. And you have had serious complications with your lupus. But I have to say that you are awesome because you're hanging in there like it or not and it is not fun. We all know that!

I could tell just by reading your post that you're not the kind of person who gives up. I think about every person who posts or reads this board has more than one lupus or lupus like disease. For many of us, our lives have changed because of our diseases. Over time and with the help of our families and doctors or support groups--actually wherever we can find help or support--we learn how to take care of ourselves, help our friends understand what it's like for us by giving them reading material etc., and figuring out how to have a good, fun but different life with lupus or whatever. It IS possible. DEFINITELY!!!

This is definitely a place you can come and vent safely and know that there are folks here who will "get it". You also got some good practical advice in some previous posts that you could use in "real life" if you don't have it in place already. Anyway welcome, Bekkah, I'm glad you found your way here!

xoxo emmie
Posted 1/27/2010 12:21 PM (GMT 0)
Bekkah! I am so sorry you are having to go through all of this! You have recieved some great advice and I would also like to back up MJLD. Maybe your parents can talk with the school and arrange for a tutor to come by, that should relieve some stress with school. I have lupus nephritis also and it can be controlled very well with some of the newer meds out there.

You stay strong and it is normal to have these feelings but i want to emphasize, you will have ups and one of the things that helps those ups come quicker is a postive attitude.(which might seem impossible) I have started ready Joke books and they give me a good laugh. Do thinks that make you laugh. Laughing is so helpful with chronic illness. Also, think about talking to a school counselor. They are trained and have the resourses at hand to make things a little easier mentally and emotionally!

I am praying for you Bekkah and please come back anytime you need encouragment, have questions, or just want to vent. The lupus support group in my area, is too far for me to travel so I use this forum as my support group along with family and close friends. God Bless you!
Posted 1/27/2010 2:18 PM (GMT 0)

Hey Bekkah,

First let me start by saying I agree with everything that everyone has posted so far.  You sound like a very strong, motivated person and that is so very important when you are dealing with this disease.  I was diagnosed about a year ago and I've been through many of those emotional rollercoaster rides that come along with this disease.  One thing I try and tell myself is to not look at the whole picture but to take it one day at a time, cause it seems when I start to think about everything this illness has done and can do it totally stresses me out and sends me into a depression mode of feeling very sorry for myself and asking questions like "why me?"  But I realized that when I get like that it just intensifies the symptoms both physically and mentally.  It is important to keep a positive attitude if you can.  I have 2 teenage sons and I know the stress of what going to high school is all about.  Nowadays it seems like the pressures of school are way more intense and more demanding then years ago.  Do all your teachers know about your condition?  Every school has a make-up policy when it comes to missing school, but I think you would probably follow under different circumstances when it comes to getting your work done.  Get to know your school counselor ASAP.  They can be a tremendous help with keeping your teachers and administrative staff informed of your circumstances and can help be such a good support system for you when you need someone to talk to.  Are your friends supportive to you?  I know how it can be at this age to try and juggle the social life with family life and school.  My sons tell me all about the pressures they go through and how demanding some of their own friends/girlfriends can be.  It's about creating a balance that works for you and noone else.  Hang in there sweetie!! This online support group has been such a blessing for us all and has helped me tremendously to feel like I'm not alone and neither are you!!

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel syndrome

RX - plaquenil, prednisone, lisiniprol, folic acid, anti-inflammatories, darvocet when needed, hormones, fish oil, Vit. c and d, and multivitamin

Posted 1/27/2010 2:39 PM (GMT 0)
Bekkah,

My heart goes out to you too. Who's on your support team at home? It's important that you have a good team working with you to overcome all you're going through. Can you talk to your mom? your counselor? your best friend? Hang around here...this forum has gotten me through the past six years. Don't ever hesitate go come here and yell and scream and vent, in addition to asking questions.

Sorry, but I'm in bed with bronchitis and don't feel much like writing today, but I do hope we'll see more of you.

Sending love and positive energy your way.

Pat

P.S. You're right. lupus sux!
Posted 1/27/2010 10:48 PM (GMT 0)
Everyone thanks so much for your replys!!:)

Ive done everything possible there is to do at school with my counslers and teachers. And the idea of homeschooling to me has been concidered, and then to homeschool would be like giving up and quitting in my eyes. Im a very social person and i interact with people very well, escpecially adults thats why i decided to come on here. Im not happy at all with who i am in life and what im going through. Im a worry wart and always have been but with my conversion disorder i can have seizures in my sleep and not wake up in the morning to go to school. I have a friend named allison who has been with me since the begginging and she is the only one i trust and know understands as much as she can. Ive always wanted to go back to my 4th grade year and just stay there forever and never move on. I always ask why me? and i feel guilty because if it wasnt me it would be someone else. There are also people who know they cant be cured and going to die. BUT its still very unfair to me. I feel like im lost and im not heading down the right path. I just want to be normal, thats all i want. Thats it. and im never ever going to be. Im sorry that i sound upset and its because i am. i have been for about 5 years and its driving me insane.
Posted 1/28/2010 2:50 AM (GMT 0)
Don't ever apologize for having and expressing feelings!

I'm sure this sounds trite, and I really really don't mean it to be - but at your age most people are trying to figure out who they are and what to be. For me at that age there was NO WAY I felt anything near normal -- and then to have the addition of chronic illness on top of that -- ICK. I am so sorry this has happened in your life.

I tend to think 'this is part of my life' rather than 'this happened to me'. The first gives me a little sense of power over the illness, and reassures me that it is not the only thing in my life or the only thing I am about. The second makes me feel like a helpless ant, and only leads me further and further into the black hole of despair...a place I simply refuse to visit.

Accepting the "new normal" sucks, and some days I'm a lot more graceful at it than others. It sounds as though you know what your options are, and that you're holding up well (on the outside). Feelings about loosing out on the things you can't do are normal, and it's healthy to express your frustration out loud to someone.

I'm glad you can come here and talk and get the poison out of you. We may sometimes fall into trying to give you help or advice, but it really sounds like you need us to listen and let you know it's like that for us too. It really is like that for me -- some days are just miserable and I try and do too much and get too tired or too scared -- and some days I just do the next thing I'm supposed to do and hope for the best. It really is pretty crazy-making, so feeling insane with worry & upset makes perfect sense to me!

Hang in there,
Posted 1/28/2010 7:07 PM (GMT 0)
Hi! Bekkah,

Hon, we are glad you found us here. That in itself says so much about your strength. You know, I think it's ok to give up once in awhile!  But just for alittle while, Like, today,  between 2 and 3, and maybe even tomorrow, too. Ask Allison to help you plan something really fun for your Official Giving Up Day. Like a pedicure, or a (small) bag of popcorn, or pick a day when you can plan ahead with your family for a Giving Up Day to do something you really, really wish you could do, send invites, mark everyones calendar!!! Maybe host a soccer game where you get to kick all the goals you want to.  Yeah, I know, it's not the same, but maybe it would be a way of letting your family and friends support how you are feeling. Like you really do feel, more days than not. And that's ok. We all get sick of being so sick. Each one of us here knows much of what you are going through. We are young and old, moms, kids, friends. yeah Your friend Allison can share some of it, but to know Lupus, you gotta live it. Every day, the good with the bad. Life is all about balance, and too often our days are in the dumper. Lupus used to be one of those terminal diseases no one knew enough to even talk about. And now, early diagnosis and treatment means we can live with it. And on some days, better than others. And research and taking our meds today, means in the near future, treatment options will be better and our life with lupus will be better.  So know that you are not alone,  and keep us posted. tongue hugs,

suetoo

Posted 1/28/2010 9:18 PM (GMT 0)
I really wish I had the level of strength you show so young. I was ill as a teen but no where near as sick as you are. I know this is hard and you want to give up and just let the lupus win but the truth is that you won't let yourself do that. I know homeschooling might seem like giving in but maybe you could make an arrangement where you go to school once or twice a week and have tutors the rest of the time? It would be a good compromise and would give you the social interaction you want. I am in grad school but I almost had to quit because I insisted on taking in person classes. Once I realized I needed to give that up and take online classes instead I began doing better. The stress of being exposed to all those germs on my immune system was just too much for me. For you right now you need to think about what is really important to you. What is it you really want because it sounds like you are trying to take too much on yourself. You want to be normal, guess what no one is normal- no one my guess is what you really want is to be healthy. I think we all want that. Stress makes lupus worse so if you want to be as healthy as you can you need to let go of your stress. I am always here to listen and will offer what advice I can. I know being a teenager is stressful alone and being a teenager facing what you are facing is much much worse. I wish I could wave a magic wand and make lupus disappear. Unfortunately I can't. What I can do is offer to be your friend and to listen when you need someone to hear you.
Posted 1/29/2010 12:39 PM (GMT 0)
(((Bekkah))) I'm really sorry that you are so sick. You certainly are a strong young woman, but it sure is hard keeping strong when all you want to do is cry. Just a thought: We are all entitled to a pity party now and then.  

I know being with your friends is the most important thing you can do to keep sane. It sux that you miss so much school. I went to the search engine ASK.com and entered "teenager with chronic illness." With just a quick glance I found a site that you might find helpful: www.lehman.cuny.edu/faculty/jfleitas/bandaides/ Maybe you and some of the other sick teens here can lean on each other. Regardless, you might find other sites that can help. I'm sending you lots of positive energy to help you through your day. Love, Butterflake

Posted 2/2/2010 7:03 AM (GMT 0)
(((Bekkah))),
Welcome to the forum. I'm glad you found this site. The others had some wonderful advice and support for you to grab hold of. I really don't have anything to add, but like you said in your first post, "you still have your whole life to live." Hold on to those words!

You are a very strong willed young lady. I'm very impressed with your strength to reach out to this group for support. You will definately find plenty of it here. This is a wonderful group of people who know what your dealing with and will help you in anyway possible.

It sounds like you have a true friend that will stand by you in your time of need. I'm glad she is there for you.

I have had lupus since I was 19 years old and I'm 51 now and still going strong. Hang in there and keep us updated. You will be in my thoughts and prayers.

Babs
Posted 2/12/2010 4:40 AM (GMT 0)
Bekkah=)
Sorry to hear what your going thruough, sweety just hang in there you gonna be okey, you been fighting it all this year just dont give up your a very strong young lady dont let anything stop you ..YOu can fight this through just surround yourself with your love ones=) i know how you feel Bekkah before i was diagnose with LUPUS everything in my life was fine..Its been 3 years for me now and i am still struggling with it .. i feel scare and just want to give up at times..but i learn that you just gotta be strong and fight it..and have many support, surround your self witrh positive people. When you feel scare just pray just have fait okey...My prayer will be with you =) Dont give up people here on earth that love's you. and you are special=) This is a good place to talk and express your feelings keep us posted Bekkah=)
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