Monday, July 20, 2015

A Note To My Readers

Hello Readers!
I want to take this time to posts my unbelievable gratitude for the incredible positive response generated from my recent media features. I am absolutely blown away by the hundreds of comments, personal emails, and kind words I have received. I want you all to know I read each and every one of them! 
Please note however, there is only one of me, and it may take me time to respond to the many hundreds of responses. I do not have a PR; I am just a single individual responsible for this blog. As some days I cannot make it to my computer due to my health, it may take days, or even weeks to receive a response. Just know, I do read them all and have a desire to reposed to every single one. Each email brings an immense smile to my face, and joy to my heart. You have no idea how much your replies mean to me, and the proclamation they display that I am doing the right thing by sharing my journey with this awful disease. I feel I could also take this time to answer a few questions that seemed to be a reoccurring theme in many emails. 

1. I have already accepted Jesus Christ as my Lord and Savior. 
2. Many people have expressed to me if I pray to be healed of my afflictions I would be disease free. While yes, I firmly believe in the healing power of my Savior, I also believe that His plan does not always make sense in our eyes that cannot see eternal perspective. For years I did just that, prayed for healing that never came. It took time for me to comprehend that the healing power of prayer may be different than most people assume. I needed to start praying for the will of The Lord and not my own. I had to accept that the absence of my disease might not be His will for me right now; that my illness may have a more divine purpose. I have come to understand that the healing power of prayer is not alone physical in every sense of the word, but emotional as well. I stopped praying for physical healing and began to pray for my life to follow the will of God but, that through this storm I could receive peace and strength. I have never been let down, each time I have prayed for peace and comfort I have been heard and granted the serenity I needed to accomplish a task or particularly rough day. Once I aligned my will with His I felt as though we had never been closer. I stopped feeling alone, and started feeling like a true child of God. He has granted me so much strength through this illness; each time I prayed for peace I received it in abundance. The trials we face hold a purpose, simply wishing then away because we don't think we can carry the burden will only hinder us. 2 Cor. 12:9 "My grace is sufficient for thee; for my strength is made perfect in weakness. Most gladly therefor will I rather glory in my infirmities, that the power of Christ may rest upon me." 
3. Yes, I fully believe that an illness must be approached from many different angles, not only addressed by western medicine drugs. I am a firm believer that one must heal spiritually, emotionally, and physically from an illness. I take part in many practices of healing; I not only see physicians, but natural medicine providers, energy healers, message therapists, councilors, physiologists, and am of course on a spiritual journey of healing with my Savior Jesus Christ. I am very open to exploring every option when it comes to healing the human body. I have tried many alternative therapy methods, and have found benefits in many of them, such as oils, lotions, supplements, cannabis, and energy healing. While these bring relief to a terminal illness, they have not cured my condition. I enjoy their use, and the benefit they bring me, but also rely strongly on western medicine as it is what's keeping me alive currently.

I have a very busy next two weeks full of procedures, testing, and days spent up at the hospital. I will try to keep everyone updated at the end of each week! Also, I am home safe and sound from the incredible Scleroderma Foundations National Patient Education Conference! I will soon be uploading a posts dedicated to the amazing experiences I had the pleasure of partaking in. One of which was speaking on the young adult patient panel!

Speaking at the 2015 Conference 

To visit my recent media features please follow the links below:
1. Meet The Girl Whose Body Is Turning Into Stone - Yahoo
This is the original feature ran after a direct interview I had the pleasure of preforming with the senior editor of Yahoo Health. I am so grateful for her time and dedication to my feature, you are amazing Amy! It was absolutely perfect and I could not be happier with the way it turned out!
2. Woman With Systemic Scleroderma Details How Disease Is Destroying Her Body - DailyMail
This feature was created after my Yahoo piece ran. It was forged by the Daily Mail through assumptions made from my previous feature, and snippets of my blog. While I am absolutely glad it ran for awareness purposes, it does have some misinterpreted information. Many other online media newspapers picked up this feature after the Daily Mail ran the story. It's kind of like playing the game telephone, by the latest feature they had sentences I never even said! lol Just keep in mind Yahoo's feature is the original, and the only one directly from me.


  1. You really are my hero. Glad you found me on IG. I love your testimony, your positive attitude, your personality and pretty much everything about you (the exception being the fact that you live so far away and we've never met! ;) One day we will meet. I may have to take a road trip out that way! Love ya friend!

  2. Hi! Love u frnd! Wish may GOD bless u with lots of enough happiness and satisfaction in life.! Love your words to read.!

  3. I have SO been here. I have had the questions about healing. This is exactly how I feel. My hardest part with Lupus and CREST was that God could heal me and He was choosing not to. In the quietness I heard Him say, my grace is sufficient. You are made strong when you are weak. Sometimes I "hate" it when He is right. I look back on how He has directed my life because of the autoimmune diseases. Who He has placed in my life and how He has asked me to step up in areas of ministry that I would have not taken on had I been healthy and fully functioning. It is hard being young and looking "normal" and yet it is day by day if I can function or not. Those days I have to choose Joy and gratitude because I don't have it on my own. I get it. I am in the same boat. May the time on this earth that we have make us live radically so others will find Him. Blessings on your journey dear sister in Christ.

    1. It seriously lightened my heart to read this Jonalee! You get exactly how I feel! I am so relieved that another person sees and accepts the way the Lord can refine us through trials such as illness! It is so nice to connect with another Daughter in Christ!
      Love, Chanel