Ive had enough of about everyone and this disease.

Hello, Im bekkah nice to meet everyone. I am 14 soon to be 15 this saturday. Ive had lupus since i was 10, and have undergone more then probably any of you have from being sick. Getting lupus at such a young age is worse then getting it at 40. That means mines active and yours however didnt start acting up till your at an older age of 40 or so. To be diagnosed at a young age isnt good. Ive gone through pretty much everything. Ive missed out on so much that no tennager deserves to miss. I struggle getting up everyday and walking myself to the bus and getting on, because the pain is so great. Ive been having trouble with kidney nephritis and have undergone tons of steriod treatments. Oh speaking of that i havent come off that stupid pill since i first got sick. Ever gone to school and been made fun of because one day your skinny and the next look like a chipmunk. No. Its not fair. Im tired of dealing with any of this. Dialysis is draining everything from me. Now im suppose to undergone more chemo? You've got to be kidding me. Im so done with all of this. I get on here and read your peoples adult lives and how you can't take it. Well your lucky enough to be at an age where you atleast got to enjoy being a teenager and not worrying about taking medicine everymorning of 15 pills, because if you miss them theres no way you'll make through the day without breaking down because your so sick and the pain is unbearable. I really wish you felt the pain i do as a teenager. Because i know that if its so bad now for me, how will i make it through my adult years. I want people to learn to sit back and realize that your greatful to be older or atleast not still a kid. I know so much about this stupid fustrating disease. Ive had to grow up faster and learn faster. Yes im jealous. Yes im hurt. Yes im sick. But please, sit back and take a look. I have this story id like people to read its called the spoon theory. ill post the link. Its important to read. Helps those around us understand what we deal with on everyday basis.

Thanks so much.

bekkah

Hi Bekkah!
You are right, it is not fair yet it is also not fair for ANYONE to struggle with this disease, just in a different phase of their life. I am sorry you have had to deal with everything you have delt with. Keep your spirits high and don't give up. Don't let Lupus win this fight. Try to think about the day that your lupus will quite down! I like to think that since life has been rough so young, it will be a breeze when we are older. Heck, by that time, their might even be a cure or newer medicine to treat Lupus that stops organ damage and helps life be fairly normal. I know their are several drugs currently under clincial trials that are showing a great outcome for treating lupus! Please don't give up and please NEVER wish what you feel on anyone else. I also like to think about the good days, the days where I can get up and do productive things rather than get up get dressed and have to lay back down cause you hve no energy. Even if they are few and far inbetween, it helps me to keep going!

You might be supprised at how many people have been diagnosed and have similuar stories as you have, that don't share their age. I was diagnosed in my late teenage years. I will say, you are right again about it not being fair but I don't agree with coming on here and making my friends struggles sound trivial because they are older than you!

Hi Bekkah!!

I am glad you found healingwell. There is some great info and support here. I have met some good people coming to this forum, of all ages, and backgrounds.

I can definitely relate to some of the things you said with being young and having to deal with so much. Its hard not to get angry with this disease sometimes as you know. And other people that make fun of you because you are a different weight than you were....definitely not cool, as others see results of illness and are not always educated as to why our bodies change during treatment.

I am 35 but have battled with this since I was a child. We knew I had CFS and the muscle pain, was sick easily but then had good times with bad. I also had Rheumatoid Arthritis as a child and teenager. The downfall was that my mother did not keep me with treatment for my medical conditions, and when I started college it spiraled out of control almost killing me.

In 2004 I was put on megadoses of steroids for about a year. I was already angry due to Lupus attacking my organs, bad medical care, but I was supposed to graduate college. Lupus attacked my heart, skin, you name it. The anger I had then combined with steroids definitely made it more difficult to control my anger at this disease. I have almost died from this with strokes, memory loss, and developed seizures, stomach issues and severe migraines.

You are right when it stinks to not live like a normal teenager. I can definitely relate as to I wish I could live normal. I am one of the Lupus people who cannot be in sunlight, not through windows, outside etc, as I even burn and get sick from certain light exposures. But...in time you can learn others who are out there with what you have. No it is not easy, but you can find support and hopefully develop a plan for yourself. Easier said than done, as we can make plans to go out with friends or family, then get sick and have to cancel.

I'm not sure what your relationship is with school, but are you able to do homeschooling with local people? Or have your parents spoken with the school and doctors to get you on a 501 plan I think it is called so you can keep up with schools via a tudor from the school? I am taking online classes now and I must say it has helped distract me and is flexible with how I feel. I am going back for medical social work so I take that class on campus and the rest online through the local college. I want to help advocate for others, like us, who need more understanding of what we deal with.

I hope you can find a way that makes this disease easier for you, and maybe some friends who are sick that understand what you deal with. I know the local arthritis organizations have things for teens for summer etc so you can get out and meet some people with will be able to relate with.

Good luck Bekkah, and know that you have people behind you.

Leta

Hi Bekkah. Welcome to our forum. I hope you subscribe to Lupus Now magazine 'cause it has a whole section for teens. Although we're old folks (I'm 52) many of us can relate to spoon theory. Please feel free to vent anytime. I will leave you with one thought: A few years ago I was sitting in my rheumy's office and a woman said to me that I looked how she felt years ago. She was in for her routine check-up and has been well for 20 years and is now 70. Thinking of her has always given me hope. I'd like to think that someone, on this forum, or elsewhere will give you hope too. Love, Butterflake   

I'm chris and i had Lupus SLE since i was 15 and im 22 no and im on dialysis and have been for 2 years going on 3. I know how you feel. My wife left me , am raiseing a 2yo on my own and all i have is disability. There was so much i wanted to do and see and now thats all over for me.

Hi bekkah & Chris, I am so sorry that you both are dealing with this disease at such a young age. This is a great place filled with wonderful people who will offer their support, advise, etc. I hope you like it here. Feel free to vent, ask more questions, etc, that's what we're all here for. Hang in there and take care.

Moderators as mothers!

Laughing my behind off!

I am just so *not* a mother.

But I might be a cat...

I am so sorry you are going through this so young. I started getting sick in my early teens but wasn't dxed until I was 27 I spent years being told I was crazy and dealing without meds with pain so bad I couldn't walk I had to crawl. Right now I am having neuro issues and have had a migraine since December with no relief. I have those days when I want to give up, but we are both too young to give up. They claim that for those who get lupus young it burns itself out around menopause. I can't recall where I heard that but I did hear it. There are new meds in development for the first time in over 40 years, there is hope. Believe me there is hope.