Month: May 2014

Owning my story in beads…..

If you were considering buying me a birthday present this year I ask that you stop and read this post and if you find it in your heart and that the Lord or someone else is calling you to donate you please do. Beads of Courage is a “a 501(c) 3 tax-exempt organization dedicated to helping children with serious illness record, tell and own their stories of survival.” Beads of Courage currently provides to over 150 hospitals in the US and over 30,000 children like me. Beads of Courage is a foundation I hold so closely to my heart as their mission is that each bead “tells a story of hope,strength,and courage” something so amazing. Each bead I hold on my strand stands for a different EKG, EEG, Ambulance ride, stay overnight at the hospital, IV start, and so many more.The amazing thing about this program is that it’s free to me and other children! Not only do BOC represent children like me fighting Chronic and Long Term Illness’ but they also provide to children fighting cancer, burn families, neonatal ICU families, and cardiac conditions. For younger children it is a way to make what they are fighting easier and their beads are a neat way to involve them in their journey. For older children it is a way to honor what they have gone through and realize how strong they are. The also have a Siblings program which is truly amazing as it helps siblings understand just how important they are as many brothers or sisters fighting illnesses often feel unimportant or alone as they too suffer. One of BOC main funding ways is through donations from people like you, and today I ask that you consider donating to help the many children like me honor their journey. Wether you are able to donate $5 or $500 I ask that you donate whatever you find in your heart. I appreciate you considering this wonderful foundation and I thank you so much from the bottom of my heart it really truly means the world to me. In the pictures are my sister with her Sibling Program Beads and Myself with My Chronic Illness’ Beads. As you can see my beads are taller than me now!! To donate please visit this link and find the tab “donate now” at the top of the page: homepage http://www.beadsofcourage.org (:

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A plate of HEALTHY with a side of POSITIVITY.

Over the last almost 2 years I have been so adamant about not letting my illnesses define me but after looking in the mirror lately I’ve realized that I’ve done the complete opposite. I set myself up for a crash that eventually would happen, but when I had no idea. They say once you hit rock bottom things can only get better. I tend to agree as 2 years ago I thought I had hit rock bottom when I was desperate for a diagnosis, 6 months later I hit rock bottom again as I tried to crawl out of my skin that felt infested by illnesses. I hit rock bottom for sure last week though, that I am certain. As I said I’ve tried to not be defined by my illnesses but rather strengthened but as I looked on my social media and overall self esteem one would know nothing of what my life used to be because I was so clouded with being sick. I shielded myself from what I loved most and instead lived in a pity party of constant worry. How selfish of me to let the beauty of life get washed away because of the negativity I saw staring back in the mirror at me. I got so frustrated with myself last week when I realized what I had been doing to myself I was pushing my dreams away and settling for less than anyone should because I was now so shaded and afraid of what it was like to go back to the old me. I can sit here and tell you that I’m afraid of recovery I’ve lived with a chronic illness long enough now that I’ve forgotten what it’s like to feel healthy. Yes I said that and yes it’s true. I’ve settled in my body and have adapted to pain to the point where I think something is wrong with me if I’m feeling good. The point of this blog entry was more of a venting for me as I am excited to join the road to recovery. I start physical therapy tomorrow which is a huge leap to recovery for me as I am physically not able to run more than 2 minutes without having problems. My body is so weak from being inactive that this will be vital in me recovering. On top of that we’ve been weaning me off my steroid the past 2 weeks and I will be officially off of it in 2 more weeks.  6 months ago I depended so much on this medicine and it’s so rewarding to know that it might not be needed anymore! We aren’t sure how my body will react to not having the steroid at all but we are all crossing our fingers and hoping I will do okay! I will officially be off of it in 12 days! So as all these new change are taking place I’m hoping that this is opening a new chapter in my life. I believe positivity is the key to success in life as without it we are stuck mellowing in our pain. I let the negativity flood my life and got so sidetracked by all the positivity ahead of me I dwelled on being the sick girl and stood back and watched instead of jumping in. I understand that recovering from something as life altering as this is will not be easy and I will have to work very hard to get to this place but I know that once I do I will be more than proud of how far I’ve made it. I hope that someday I am able to look back on this journey of my life and realize how much stronger it has made me.  Everyone’s struggles come in different sizes and forms and what may seem like nothing to you may be huge to me however I believe that with encouragement from others and surrounding ourselves with positivity in life anything can be accomplished. Like I said this will not be an easy thing to get through and of course there will be set backs and bumps in the road but that’s what life is all about and I’m eager to share with you my journey of finding myself again. I didn’t think I would find myself here when I first started this blog but with the support of amazing people like you I feel blessed to be where I am today. I invite you to join me in trying to see the positive more often in our everyday life because no matter which direction you look there will always be positivity even if it’s just a smile on somebody’s face.