Sunday, January 31, 2016

when the going gets tough

I've been an "I could" kind of girl for as long as I can remember.

It started off when I was younger. My dreams were big, as they should've been. I could be popular. I could be beautiful. I could grow up and be famous. I could be this, I could be that. I wore out the phrase like an old sweater. It's always been familiar to me, and it flows off my tongue like the melody of a song.

And just like every child does, I grew up and my dreams became a little more realistic. My "I coulds" became obtainable, and I dreamed of achieving them.

I dreamed that someday, I could change the world. I could change people's lives. I could make a difference. 

But the days grew longer and my bones began to ache. At seventeen, I was worn out by noon and my fatigue overtook who I was. I was in pain constantly. I was so sick.

And the "I coulds" changed again.

It became: I could have fibromyalgia. I could have arthritis. I could have an undefined connective tissue disease. I could have lupus. 

And then, for the first time in my life, an "I could" became an "I do".

On Tuesday, January 26, I was diagnosed with lupus.

Lupus. A disease where the body's immune system attacks itself. A disease where the body attacks itself. This attack results in joint pain, a facial rash, memory trouble/loss, and exhaustion - along with many, many other complications.

And now, the "I coulds" sing a different tune than ever before.

I could lose my hair. I could lose my memory. I could have kidney problems. I could have heart complications. I could have trouble breathing. I could end up in the hospital. I could end up not being able to go to school. I could have to give up on my dreams.

And it sucks. It is the worst feeling in the world to be a ticking time bomb at the age of seventeen. I am at a loss.

I spend so much time crying and grieving about this stupid diagnosis because the biggest I could in my life involves the fact that I could die. 

Not every teenage girl has to go about her everyday life with the constant fear that the dormant disease inside her will take a drastic turn, not everyone has to live in fear of the silent disease that calls them home.

It hasn't fully hit me that I am living now with a rare, autoimmune illness that only five million people in the world have. It hasn't fully hit me that I may have to kiss some of my dreams for my future good-bye. It hasn't fully hit me that I am never going to be the same, and that my life is going to be different than I imagined it.

But what has hit me, is that I need to be brave. I need to live every moment with a joyous and thankful heart. I need to praise God for every moment where I feel completely normal. I need to rejoice in the moments where I am not feeling any pain.

And when I do feel pain? I need to pray. I need to push. I need to preserve.

Because I am lucky, in all the moments when I am not lucky, I still am. It could always be worse, and I am still so blessed to be where and who I am.

I'm writing this today because I want everyone to know that it's okay not to be okay. It's okay to be weak and to not feel like you can push through any longer.

But it's not okay to give up.

In everything that you do, you need to do your best to prevail. You need to do your best to push yourself to succeed and to be the very best that you can, always. Every day of your life, you need to let yourself be afraid. You need to let yourself be scared of what could be. Do crazy things. Do wild, adventurous things that scare you.

Just let yourself live.

At the age of seventeen years old, I have become a ticking time bomb.

I have Celiac Disease.
I have Fibromyalgia.
I have Arthritis.
I have Depression and Anxiety.
And now,
I have Lupus.

And right now, I am so scared.

But that is not going to stop me from turning every "I could" into "I am" and "I did".

Much love,

Jess

29 comments:

  1. You rock being brave hun my journey started at 17 now im 44 .hug of support.
    Love your blog ive heard its very therapeutic to write about our challenges.

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  2. Wow my daughter is nineteen with lupus and she is attending university she is in her first year. I wish you all the best and I'll pray for the Grace of God give you peace in your trail.

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  3. Your words are your outlet!It is a battle but don't ever quit.You will always be lovely,when your down write your words and share them.So many of us rely on virtual friends to get us through.Trust in God and never give up!

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  4. Hi Jess,

    I was diagnosed with Lupus at 14, and I'm now nearly 30. In that time, I've had 2 big flares (getting through one right now), which have caused kidney damage. Like you, I go through the different emotions on some days, other days I'm doing just as you were before and planning my dreams. Having lupus doesn't have to mean those dreams don't happen - in fact I believe that having the disease encouraged me to push and get things that is always wanted. I managed to train and qualify to become a primary school teacher, I've travelled the world with my husband, and a new one - have just bought a campervan to travel Europe! I know that you will have bad days, or even weeks, but don't give up on your dreams. They're what keep your mind healthy and positive, and in turn will help you overcome the darks days and improve your lupus. The best advice I can give is to get to know your disease more than anyone. I have the best consultant, but it's so important to know your own body and recognise when you might be over doing it, or when you think a symptom is actually just an ordinary cold! It will take time, but find strength in knowing you are not alone and actually, life with lupus can be a very good one! Take care x

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  5. My Lupus Journey, My Life
    http://mylupusjourneymylife.blogspot.com/

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  6. Hi Jess
    I was diagnosed with lupus at the age of 28 I'm now 49 and feel for you as I know how you feel when you first find out. However I have and am still living my life to the best of my ability. I have a wonderful husband, 2 grown up children and a great support network. I work with disabled children which helps me realise that there is more to me than what some children have abd life is what I make it and only give in when I'm having a flare up and you get to know when there coming!!
    About 6 months ago a friend introduced me to drinking aloe vera gel and taking some supplements for energy and to help me sleep better as well as some other products and to start with I was dubious but then thought what the hell I've got nothing to lose and my arthritis has been much better my sleep and fatigue has improved incredibly and my latest blood work my results were lower than they've ever been! If you want more info please feel free to email me : hjbrill@aol.com

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  7. Hi, my name is Daniela, sorry if my english is not so good. I'm from Argentina, I'm 26 years old and i've got lupus at 17, like you.
    And it was a challenge, it is a challenge.
    Lupus teach me a lot: to be patient because as you sAid, the could change and became in I could try, But now knowing that maybe it wont be in "I did it".
    I learned too to be more kind with other people.
    And some of my realistc dreams became a reality: I am a lawyer, I played field hockey, and I try to enjoy every moment even if I feel very very tired Or my body has pain.

    I know is hard to be possitive, But it is the best therapy.

    Think happy thoughts!
    Big hugs!
    Dani, sorry for my english again.

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  8. This is so beautiful and poignant. You must be a very special young lady. I, too, have Lupus and Fibromyalgia which, each in turn, cause depression and anxiety. However, I am 51 and was diagnosed 3 years ago. I cannot begin to understand how devastated you must feel at 17! There is life after diagnosis and you will learn to manage it. Life changes but there is still good in every day. Your friends and family will become even more important to you. I really feel for you. Keep writing-you have a real talent for it. To move people with your words is a gift.

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  9. Your words have and COULD continue to inspire others. You are so brave and I don't think you realize just how brave you are. Stay strong and keep inspiring!!

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  10. Your words have and COULD continue to inspire others. You are so brave and I don't think you realize just how brave you are. Stay strong and keep inspiring!!

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  11. I have the exact same diagnoses as you. All of them to the tee. If you ever want to talk my email is gamegirl151@gmail.com. I'm 36, a college professor, adventure hiker, crossfit enthusiast, fitness trainer, world traveler, and fellow survivor. We can do this! ;)

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  12. You are a brave and strong young lady.You fight hard as long as you can until we find a cure or treatment for this disease. I will pray for you and science.

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  13. You are a brave and strong young lady.You fight hard as long as you can until we find a cure or treatment for this disease. I will pray for you and science.

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  14. You are exactly right. Giving up is not an option. However, grieving is. I cried for a week straight before I decided that THAT sucked and got up and moving. You are a gifted writer. Perhaps it is what u are meant to do. Bring awareness. I know you will make peace with this horrid thing...but in the meantime, just know that you aren't alone.

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  15. My thoughts and prayers are with you Jess..
    You are so much stronger than you think sweetie YOU just express how you feel and what you are going through.. You didn't just uplift my spirit but obviously others who read and comment on this post and cheering you on.. I too have LUPUS it's been 20yrs . When I was diagnosed I too thought I wasn't going to see my dream, my dreams wasn't big and fancy either it was just maybe consider simple to some people but it was big to me then and guess what ? It's 20yrs later and I give GOD all the GLORY for keeping me this far in yes so many days of pain and being depress just to name a few including today and after reading your letter you have uplift my spirit and now I can get up and not cancelled with my friend to go later. Thank you Jess I'm sure you are going to inspired your age group who are going through this disease because it's day like this when you feel down and you come across someone else you can relate to who will give you that little push to remind you that you are not alone and this is how GOD show himself sweetie.. See when I was diagnosed my 2 children was very young and all they have was just me I had no help so I asked GOD just let me live long enough to take care of them and they wouldn't live without me ... GOD answered my dream you see Jess it's my daughter last year in college she will be graduating in May and my Son the older served in the US Army I'm so proud of them... So you see Jess 20yrs from today you too will say "I DID" in whatever your dreams NOW you are aspiring to be .. I'm cheering you on sweetie and when you feel down just take a glimpse back at this page and you'll see all of us on this page CHEERING you on ������������ you are such a HUGE BLESSING right now for your peers who are going through this disease.. PS how about you start a group you are very intelligent ... I met a young lady last year on the bus she had some get well balloons and I couldn't help but to ask who were they for and she replied they are mine , she had just left the hospital 2 towns from where I got on the bus and heading back to school where lives on campus (COLLEGE ) 2 towns over .. I prayed with her right there on the bus her family are far away and she too going through (Sickle Cell ) another terrible disease ... Reading your post I can see how strong you are . I'm sure you will be great for this platform " I Did" on your campus I'm looking forward to see you in the media helping others...

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  16. Hi My name is Jennifer. I am 38 and have been told I have Lupus. I am still waiting to see the specialist. It's been 2 1/2 weeks since I was told. But I don't believe it. I had positive ANA and a lot of the symptoms. I dont want to believe it. Will the specialist tell me something different? I am afraid and in denial. I don't know of any support groups nor do I have anyone who can relate to what I am going through. If anyone has time to talk and give me advice please email me jenrob3@telus.net.

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    1. Ofcourse you're afraid, ofcourse you're in denial! I feel for you..and I am so sorry, but most likely the specialist Will tell you that you Do have lupus...it's better if you just belive it dear, you're better of beeing positively surprised if you are wrong anyway. I found this blog on facebook (just today); lupus support team. It's the only supportgroup I know of, 'cause I have been living in denial for years after beeing diagnosed! I am just now understanding, "axcepting" (not really) and hating that I am sick...I have to change. I have to *blah* and *blah* and can't *this* and *that* and so on and so on. So I haven't really cared to deal with it before. I was diagnosed at 17, 25 years and four days totay! I've had some pretty good years after recovering from my first big flare, currently going through one...a big one. Feeling so much better with my meds, and it keeps getting better ☺ stay strong you brave one, it's about to get rough! Just remember, you're tough! So brave...you'll see. Sending you my thoughts, my love and support.

      Lupie, Norway

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    2. Ofcourse you're afraid, ofcourse you're in denial! I feel for you..and I am so sorry, but most likely the specialist Will tell you that you Do have lupus...it's better if you just belive it dear, you're better of beeing positively surprised if you are wrong anyway. I found this blog on facebook (just today); lupus support team. It's the only supportgroup I know of, 'cause I have been living in denial for years after beeing diagnosed! I am just now understanding, "axcepting" (not really) and hating that I am sick...I have to change. I have to *blah* and *blah* and can't *this* and *that* and so on and so on. So I haven't really cared to deal with it before. I was diagnosed at 17, 25 years and four days totay! I've had some pretty good years after recovering from my first big flare, currently going through one...a big one. Feeling so much better with my meds, and it keeps getting better ☺ stay strong you brave one, it's about to get rough! Just remember, you're tough! So brave...you'll see. Sending you my thoughts, my love and support.

      Lupie, Norway

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  17. My sister-cousin has lived with lupus for 27 years, she was first diagnosed at 15. I have watched her unrelenting spirit fight through so much but one thing she's never done is given up no matter what's thrown her way, and so my prayer for you is that you forever continue in your stance on never giving up as well, so may you never give in and may you always let you light shine, thank you for sharing story.

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  18. My sister-cousin has lived with lupus for 27 years, she was first diagnosed at 15. I have watched her unrelenting spirit fight through so much but one thing she's never done is given up no matter what's thrown her way, and so my prayer for you is that you forever continue in your stance on never giving up as well, so may you never give in and may you always let you light shine, thank you for sharing story.

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  19. Hi Jess, My journey started at 20 years old and I went into remission around 40 years old and about 5 years ago they believe I may not have it any longer. Don't give up "I could". I cried, I prayed, I meditated for pain to subside, I rested and I tried all 'I could'dream of. Keep living.
    Juanita

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  20. Dont stop n keep your faith,had 2daughters with Lupus n a granddaughter also.my oldest daughter was diagnose at the age of 13 ,but god needed her by his side at age 15,its been hard everyday ,my other daughter is also sick with lots of complications but lots of prayers,hope n positivity keeps her going,loving family n lots of support..she just left the hospital after been in for 8months straight but God is good ,she made it thru..she's been thru sooo much but need to go on I know it's hard cuzz as a mothern a grandma it's not easy .she's a fighter each n everyday,with lots of problems but have to keep fighting n she refuses to give up..please pray a lot ask God to help you n stay positive always..don't know if you believe in miracles,but I wish you the best in your future..I will be praying for you that you'll be safe n hopeful n trust in God, he's the only one that has the last word..Take care n God bless you.😚

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  21. You still can be whatever you want . Lupus does not have you , you have it . Just take control and Fight my love . When your body says no say a prayer and tell yourself Yes ! I know its hard , I still cry and it's okay to cry . This thing is very scary . Keep your head held high , Every thing will be alright

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  22. You still can be whatever you want . Lupus does not have you , you have it . Just take control and Fight my love . When your body says no say a prayer and tell yourself Yes ! I know its hard , I still cry and it's okay to cry . This thing is very scary . Keep your head held high , Every thing will be alright

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  23. Hi Jess, I had UCTD at 20 y/o. When first diagnosed, i feel like my world has collasped. Things that could have been done seemed out of reached then. However 7 years later, because of the ticking bomb, I have learnt to appreciate things around and enjoy the joys of life. If not, like most, i might have missed out a lot of beautiful things in life. I believe you can and will, be able to do what you want, because we have all transformed to a braver and stronger person.

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  24. Crying my eyes out.. Such a good girl! I only wish I was that strong at 17, when I got diagnosed with SLE..or NOW! I want to write so much, but with this flare and all the tears in my eyes I am keeping this short and just want to say thank you so much sweetie, your writing is so beautiful and inspiering. I don't really think I need to tell you, but you may want to hear that it is going to be OK. YOU are awbiously a strong one, such a brave girl! You'll be awright, I'm sure of it. ❤

    Lupie, Norway

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  25. All my Love to you & your family Jess. I too have SLE but I'm 51 & I was diagnosed in 2009, became sick in 2007. You are an inspiration to me. You will get through this & you go out there & live your life my Lady. Just be mindful & listen to your body & try hollistic medicine, it's the only thing that helps me. Massages, rest, detox baths & many other things. Try to eat healthy organic foods. Protect urself from others that you know are sick. ex: colds, infections or any other illness they can pass to you. I find avoiding as much toxins as possible has helped me. Such as hairspray, makeup, perfumes ect. No air freashners. All unscented products. I don't want to get ur brain going a mile a minute, I'm just trying to help. So, please stay positive & strong Jess. Research all you can, please.

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