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Theses photo’s are of 18 yr old Haley Stonehocker, she battled digestive tract paralysis in the form of Gasteoparesis and she also had pots. She died October 11th 2012. I have only read about her and seen a video online but it made me cry to hear that she had died, she battled hard against her condition even though she was mostly bedridden because of it, that didn’t make her give up hope. She was also involved in the fight against these devastating illnesses and supporting other people with this condition through Gutsy teen lounge part of G-PACT. And despite the fact that Haley is no longer here, her story and her hope and fighting spirit can still help people.

The reason that i wanted to tell you about her is apart from the story hitting so close to home because of the DTP. Is the fact that she didn’t give up, and neither can we. We have to fight, not just for ourselves but for other people that are suffering, for the people who are struggling, and for the people that no longer have the opportunity to fight, no matter what condition you suffer from. Every day you conquer another battle however big or small is amazing. And everyday is a gift. The other thing is You really don’t know what difference you could make to someone else’s life.

Haley’s story really touched my heart, it reminded me that even though im so ill and exasted and sometimes get tired and tired of just the fight itself and feel like im not winning or achieving anything, and just want to give up. I am still here and i can’t stop hoping that something might change. So Keep fighting and if you can’t do it for urself, do it for the people who can’t do it anymore, do it for that one person who’s heart you might touch. its an amazing gift to be able to help someone. hold on to that hope. 

A little bit about Haley:http://www.ksl.com/?nid=148&sid=18074146

what if... it actually works????

i just read the one you wrote about wanting to “un-do” food challenges (in reference to a friend’s blog post). i know that feeling, wishing you could take it back. and the big problem in the past year with the gasteoparesis is it was so easy to “un-do” a challenge and get rid of the discomfort. i didn’t really have to do much to un-do it. today (at 12:20pm CST) i am having a surgery that has a 43% chance of helping. and as happy as i am to think that i could actually not be in pain, it adds a whole new dimension to recovery when i’ve gotten used to squirming my way out of discomfort (physically and psychologically) that challenging myself with food brings. part of me desperately wants me to be in the 43% that this works works for and part of me is terrified my escape route is going to be taken away from me and i won’t be able to “un-do” food challenges and have it be okay because i have gasteoparesis. uhhhh, your blog is just so amazing, it gives me so much to think about and relate to. thank you for sharing it with. you are able to put the perfect words to what i am going thru. please hang in there. do more than hang in there! you are amazing and you need to recover and not end up like me… not to sound trite, but i don’t want to see you at almost 30 just as stuck as i am right now.

Parent's and being ill.

so i wanted to do a post on a subject that is probably quite a sensitive subject to anyone who is chronically ill, which is how other people, mostly family and friends act and deal with having someone they care about being ill. Having been ill a long time i have delt with alot of different attitudes and reactions from other people some good and some not so good. As you probably can guess its not easy being ill, and it can put alot of strain on relationships. But i don’t really want to look at this from my point of view, i thought id see if i could imagine it from someone else’s point of view. (im going to try cover this in one post but it might be that i can’t kinda depends how long this gets and how much i witter :)

So i guess probably the best place to start might be parents, im mainly coming from the point of view of mum and having a sick daughter/son as thats how it is with me but im pretty sure dad and sick child can be the same. The main thing i guess is that i hear a lot that parents don’t understand, they don’t care, they push too hard, they always argue with me and so on. Ok so yeah it probably feels like that. I know ive been there so many times, ive thought why cant my mum help, why wont she speak up for me and make it better. Im sick right, shes got it so easy for her, to just get on with her life. Really??? is it really so easy for her to get on with her life. To know that her daughter is so ill that she can’t have a life, she can’t cope on her own, watch someone you love in pain, so much pain and you can’t take it away, her own daughter is so ill that yes she could die from this illness, and she can’t make it better. My mum has been there since i was 11 when i first got ill, she has had to make decisions about my care that are impossible to know if ur right, and yes sometimes shes got it wrong, but would i have been right if id made that decision. Well probably not, shes had to trust the drs opinions. At one point she was even blammed for my illness, can you imagine that, getting told that u are the reason your daughter is ill because you are too close and cared too much (it was total crap by the way),  And possibly worse of all she has had to watch me dying literally before her eyes, no matter what she did or how much she tried or held me or screamed at me she couldn’t stop what was happening, she use to stay awake at night and watch me breathing so scared that i wasn’t going to wake up. And one time she had to come in to the hospital after a early morning phone call to be told that my heart had stopped in the night and i had to be resusertated, and i wouldnt have survived if i had been at home. And through all this she has had too keep me going, listen to me tell her how hard it is, how ive had enough and don’t want to fight anymore, planning my own funneral on several occassions, shes had too push me, make me attempt to get on with my life best i can. Had arguments with me, because if im fighting with her, im still fighting, Shes picked me up when ive broken down in tears because its all too much. But who’s there for her? When its all too much for my mum and she has no fight left and no where to turn who’s there to pick up her pieces? Shes trying to juggle her life, finacial stuff, being a mum (i have a twin brother too) and keeping me alive. It all sounds impossible, i wouldn’t want to be in that position, would you??

So my point i guess is sometimes give ur mum (or dad) a break, just stop for a minuet (sometimes is good at the end of a argument, or at the end of a long day) and just look at her (or him if its ur dad) and really see whats going on. You might be suprised what you see, there often tired, and hurt, sad and frustrated.They might need a hug or someone to talk too, they might so badly want to cry but be holding it back cos they don’t want you to see it. They can spend so much time being strong that they can come across being harsh, like a lets just get on with it attitude. When there pushing you to do something, sometimes thats the only way they can see to help, my mum often did this she said sometimes it worked and sometimes she knew when it wouldn’t but she had to try. One thing it has made me a fighter, and ill try things. If it doesn’t work, well it doesnt work. But if she’d let me just not even try then that would have been who i would have become, she gave me my fight.

And yes parents ARE NOT perfect, they screw up, sometimes big time, theres no rule book for looking after a child/teenager, especially a sick one, sometimes they just don’t have an answer. And that’s ok, cut them a little slack. when you have kids you don’t get all the answers and magic powers, being a parent is hard. Me and my mum get on pretty well now, but we still argue, she gets frustrated with me, i scream at her, she drives me nuts sometimes, mostly because she cant get her head around Facebook since she got an account (but that’s for another post).

Last couple of things, i keep reading “my mum asked me how i was, but she won’t understand so i didn’t tell her” Well yeah if you don’t, she won’t, you have too tell them what’s going on and how it makes you feel, calmly and listen to them, ask your mum (or dad) how there doing. Also being a teenager and arguing with a parent because they don’t understand is normal. What ever reason, its like you both speak different languages. But don’t give up on them, things change and can even get better. And if your relationship is breaking down, don’t get a bitter hate of them, get some space and talk to someone else, and try work on things.

*none of this is too make you feel guilty, i just think its a little easier if you can work with the people who love you not against them* hugs

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