That talk you're talking.
WelcomeToWonderland
Posts: 89
I'm a little hesitant about posting this because i've never really told people i'm sick. i hid away when it got bad and made up lies for my symptoms. I'm not writing this for sympathy or any other reason than to maybe help others see what is already in them.
I have an systemic auto immune disease, which means my bones/joints are deteriorating and my organs (heart, lungs, endocrine system, renal ect.) are not working properly or are failing. I also have a neurological disease and when it flares up it effects my motor functions. There is no cure and im in constant horrible pain and have basically been not only home bound but bed bound for the last year and a half when it became extremely severe. I was born with it.
So today, it was about 115 degrees F. I on my way to physical therapy and I went to pull my hair into a bun to get it off my face. My shirt cam up slightly and my stomach, which is covered in bright red marks and scars were on display for a few seconds my mom fixed it for me and we were about to get on our way. Now, I do everything i can to cover my scars which i have on my arms, legs, stomach, and back. I mean i freaking wear long sleeve tops and full pans in 100+ degree weather! So anyways, a group of high school girls around my age saw and they didn't think i could speak their language and relentlessly picked me a part. i started to cry and my mom held me and then helped get out of my seat.
I was crushed and felt so worthless and then I stopped for a moment and realized;
5 yeas ago, I started treatment, I lost most of my hair, I was 14. It's now down to my waist.
9 months ago, I couldn't even hold a pen and now I can sign my own name.
8 months ago, I couldn't speak a full sentence at a time and now i'm singing in the shower.
7 months ago, I lost feeling in my legs and was in a wheelchair (due to swelling around my spinal cord)
6 months ago, I was lying in a hospital bed and my family was wondering if i was going to make it through the night.
I was unable to move for so long i had to retrain myself to walk again.
Today, I finished a 10km walk for the first time without my can or crutches . My hard-*kitten* military dad cried and my little teenage brat of a brother didn't want to let me go. That was the best moment of my life.
So screw them. Screw everyone who says anything bad about you. Because no matter what you're going though you're still here and you are strong and you are going through it. Don't beat yourself up over eating too many calories, work at it harder tomorrow, push yourself harder than you thought you could stand. Be proud of yourself because as long as you keep going and keep pushing you are amazing.
Take a minute a think about everything you've over come, every person you've tuned out who has said something negative, ignoring every evil comment, even stopping after one piece of cake.
I know it sounds silly and corny to say it, but it really put things in perspective for me and made me proud and not so ashamed of my appearance. I know a lot of people feel ashamed or worthless or less than because of something about their physical appearance. You are working to make yourself better right? To be healthier? To be stronger? To live a long life? So be proud of what you've already done. It's painful now but in the long run it's only making you stronger.
I have an systemic auto immune disease, which means my bones/joints are deteriorating and my organs (heart, lungs, endocrine system, renal ect.) are not working properly or are failing. I also have a neurological disease and when it flares up it effects my motor functions. There is no cure and im in constant horrible pain and have basically been not only home bound but bed bound for the last year and a half when it became extremely severe. I was born with it.
So today, it was about 115 degrees F. I on my way to physical therapy and I went to pull my hair into a bun to get it off my face. My shirt cam up slightly and my stomach, which is covered in bright red marks and scars were on display for a few seconds my mom fixed it for me and we were about to get on our way. Now, I do everything i can to cover my scars which i have on my arms, legs, stomach, and back. I mean i freaking wear long sleeve tops and full pans in 100+ degree weather! So anyways, a group of high school girls around my age saw and they didn't think i could speak their language and relentlessly picked me a part. i started to cry and my mom held me and then helped get out of my seat.
I was crushed and felt so worthless and then I stopped for a moment and realized;
5 yeas ago, I started treatment, I lost most of my hair, I was 14. It's now down to my waist.
9 months ago, I couldn't even hold a pen and now I can sign my own name.
8 months ago, I couldn't speak a full sentence at a time and now i'm singing in the shower.
7 months ago, I lost feeling in my legs and was in a wheelchair (due to swelling around my spinal cord)
6 months ago, I was lying in a hospital bed and my family was wondering if i was going to make it through the night.
I was unable to move for so long i had to retrain myself to walk again.
Today, I finished a 10km walk for the first time without my can or crutches . My hard-*kitten* military dad cried and my little teenage brat of a brother didn't want to let me go. That was the best moment of my life.
So screw them. Screw everyone who says anything bad about you. Because no matter what you're going though you're still here and you are strong and you are going through it. Don't beat yourself up over eating too many calories, work at it harder tomorrow, push yourself harder than you thought you could stand. Be proud of yourself because as long as you keep going and keep pushing you are amazing.
Take a minute a think about everything you've over come, every person you've tuned out who has said something negative, ignoring every evil comment, even stopping after one piece of cake.
I know it sounds silly and corny to say it, but it really put things in perspective for me and made me proud and not so ashamed of my appearance. I know a lot of people feel ashamed or worthless or less than because of something about their physical appearance. You are working to make yourself better right? To be healthier? To be stronger? To live a long life? So be proud of what you've already done. It's painful now but in the long run it's only making you stronger.
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Replies
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You are a bad *kitten*, and the type of person everyone should aspire to be. You should be proud for posting this.0
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You should be VERY proud of yourself. And you are SO right! Thanks for sharing your story!0
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Standing and clapping, then bowing low in respect. Thank you so much for sharing,0
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you are an inspiration. thank you for sharing your incredible insight0
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You are a bad *kitten*, and the type of person everyone should aspire to be. You should be proud for posting this.
Your in er strength is inspiring!!0 -
Wow. I didn't expect these types of wonderful responses. Thank you so much, everyone.0
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You are beyond badass. You are strong, you are confident, you are so many things. Brave for one for posting this, and I must say bravo I only hope to be as brave, confident, strong and inspirational as you. I applaud you ad say never give up because you can and have proven you can beat all odds. I will always be in your corner cheering you on.0
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Thank you for sharing your story. That wa s very brave of you. And congratulations on your success AND attitude in dealing with the hand that life has dealt you.0
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YOU...my girl have learned very young what many of us dont learn in a lifetime. You should be proud and your story is very inspirational to those of us who want to quit, or not try harder because it's too difficult. Stay strong and keep inspiring others with your strength and determination!!0
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I was sat here having a total self-indulgent emo evening. And now I have tears in my eyes and want to go kill it in the gym tomorrow. I can't even attempt to relate as my own issues just aren't in comparison to what you've just said, but Damn, you're an inspiration!
So thank you. Cos if you can, I've no excuse, and you're awesome!0 -
Wow, what an inspiration you are. Thank You for sharing your story and putting things in perspective for people like me who say "I can't" "I'm too tired to exercise" I'm not good enough" etc., etc., etc.
I hope you know how amazing you are .... you're a fighter and such an inspiration!0 -
You are a rock and doing great! This is a kick in the butt of all negative thoughts. Thank you for sharing.0
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Yours is a level of hell I won't ever know and yet I still tip my cap to you because despite it all you're still here and you're looking to make yourself better even if it means pulling yourself out that hole and into the light by your teeth. You've come so far, pushed instead of stopped and you had the support many never will. Be proud of you, be proud of your family, because in this world that's all that matters, the world beyond that is nothing and means as much.
It's the real ones like you that give me my own hope of seeing past my faults and disabilities.0 -
I am literally sitting here reading all the comments with tear in my eyes. You all have no clue how much what you've said means to me.0
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You brought tears to my eyes! You are the meaning of inspiration! I hope you are as proud of yourself as those around you and those youve told your story to are.0
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Wow, no wonder you feel proud of yourself! Amazing.0
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Thankyou so much for posting this sweet girl. It really puts this journey to health in perspective...I have tears running down my face right now0
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You are incredible...every single solitary ounce of you...and anyone who feels different is a fool.
Very often, when things get bad in my life...I force myself to take a step back and think of what I do have. It's difficult sometimes...but it helps.
I have my kids (this was in serious doubt for awhile, and is a constant threat from my ex).
I have my health...in far more ways than many people in this world. The health issues in my life (usually injuries) are very, very small.
I have my family...my friends.
I have people in my life I respect and admire, that give me an example of why I should go forward, and not look back.
I try to always think to myself...until I lose those things, nothing is truly bad. Nothing cannot be overcome.
You are a shining example of all of this, and I'm incredibly grateful you posted your story.
Thank you!0 -
You have me just crying. OMG. Sometime we need to step back and realize that we are all doing well and doing the best we can so at that time. You are an inspiration.0
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What an amazing story!
I agree. You're a bad *kitten*. Now, go buy more Kleenexes 'cause your dad will be standing on the sidelines cheering you on for your next event and need them. And your brother - awe, what the heck. Hug him back.0 -
You are a warrior! Thnaks so much for posting. Your story brought tears to my eyes. You are AMAZING!0
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You are truly an amazing young woman, and I admire your strength greatly. Cannot imagine where someone like youwill be in 20 years...probably running the world!0
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You go girl!!! Thank you for the wonderful story... for sharing your life. It puts my situation into perspective. Sometimes we get so caught up in what we are going through that we fail to realize that someone probably has it rougher! So kudos to you. You are a very brave young woman!!!0
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I just did a little bit of ugly cry for you.
Keep it up, gorgeous. F**k em.0 -
This is the most touching and inspirational thing I have ever seen posted on this forum. You are a warrior, you are brave, and you should be extremely proud of yourself. Your attitude and heart are amazing! Thank you so much for sharing your story with us.0
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Thank you for posting.
I cannot even imagine being dealt that hand and coming out as strong as you!
You were able to articulate the situation beyond your years.
You have no idea what an inspiration you are to me.0 -
Wow. I have no words to describe how much I needed to read your post. Reading your story has made me think about a lot of things in a different light, that I so needed to see right now. You're an inspiration and I'm so glad you were brave enough to share your story.
Hold your head up high and carry on being you - you're an incredible bright, brave person. You know every so often when I get down and feel sorry for myself, I try to look at the here and now and appreciate what I have and those around me.....but I think from now on, I'm gonna think of you. Because if you can do it and look at life the way you do, then I can too. You're the inspiration and motivation I needed to hear of late. Thank you.0 -
Nothing short of AMAZING.
Sass0 -
You are phenomenal! Thank you for sharing0
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I need to read ths when I'm "too tired" to workout. Good for you!!0
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