My Story


My diagnosis process began in May of 2011; I was a 19 year old blushing bride to be busy with work, wedding planning, dress shopping, and saving for my upcoming nuptials to my high school sweetheart. We were both overcome with excitement and joy for our special day so when I started noticing odd pains in my body I ignored them, shrugging it off as wedding stress. As our beautiful wedding day came and went I noticed my symptoms didn’t fade as I had hoped but worsened. 

My hands had begun to change, they would turn a violent purple and swell so much that I was unable to wear my brand new wedding ring on our honeymoon. My joints ached, I was losing hair, and the tips of my fingers looked as though they were dragged against sand paper. My husband and I decided it was time to see a doctor. I saw my primary care physician who immediately diagnosed me with severe Raynauds and referred me to a Rheumatologist with a somber mannerism. It was at that appointment that I knew something wasn’t right and prepared myself for a monumental change; I however, had no idea the depth my life would transform once I stepped into that Rheumatologists office. 

I entered equipped for the worse, but still was unprepared for the news I received, everything happened in a vague blur when I look back on that day. He took one look at my tightening hands, painful body, purple fingers, and exhaustion and told me I had Scleroderma. I left the office not knowing what it truly meant but had a handful of prescription drugs to acquire, pamphlets to read, and a new way of life to start. I was to return in the next few days for the results of my blood work to solidify my diagnosis. I retuned not a week later, October 21st, to receive surprising results, not only did I have an extremely quick onset of Scleroderma, but I also had blood work positive for Systemic Lupus, and Polymyosists with a very high tittered U1-RNP. I was giving a full diagnosis of Mixed Connective Tissue Disease (for more on MCTD please visit the 'Welcome' page) with the primary issue being Systemic Sclerosis (Scleroderma). I began drastic immunosuppressant treatments, steroids, and vasodilators to assist my Raynauds. Within the first two months after my diagnosis the digital ulcerations began and I was hospitalized for the impending amputation of my thumb. I ended up staying in the hospital for four days as I endured a Flolan Infusion in an attempt to save my finger. Little did I know I would return in that same situation many, many times for the multiple digital ulcers I would revive the first year and a half of my diagnosis. A year and a half riddled with pain, uncertainty, emotional instability, the loss of our first home, mounds of medical debt, and more doctors appointments and procedures than I could count. Eventually the Raynauds become so severe, and the ulcers so common that my physician refer me to an orthopedic surgeon for a Digital Sympathectomy; a surgery to remove the nervous system responsible for the blood vessel dilation in your palms. 

I once was a healthy vibrant young woman, and now I was someone I didn’t even recognize. I was on more medication a day than I could count, enduring weekly chemotherapy injections, hospitalized multiple times a year, at the doctors office at least four times a week, and now adding surgeries to my list. I had the sympathetic nerves taken out of both of my hands resulting in a year free from painful ulcerations. The surgery did not solve my problem for long however, the deterioration of my vascular system was just too severe and my hands quickly found their way back to their horrible shade of purple. In the second year of my diagnosis I believed things could not get any worse, with the onset of my thickening skin, tightening lower legs/arms/finger/feet, shrinking smile, constant pain, new diagnosis's, my autonomic nervous system beginning to malfunction, and dangerous new biologic infusions.  

I was wrong. Later that year I noticed my food was becoming hard to swallow, it was like I was trying to eat a whole jar of peanut butter with no liquid to wash it down. I went through many procedures and tests to assess my esophageal function and found that the MCTD had caused Autonomic Neuropathy throughout my digestive tract, paralyzing my organs. Not long after this discovery I established severe GERD and was unable to keep any food in my stomach without violently vomiting stomach acid. I was sleeping sitting up, lost 30lbs in a matter of weeks, and was told I was going to starve to death. My doctor decided it was time to place a feeding tube, so at the young age of 22 I had a surgically placed tube implanted into my stomach with the prospect of never eating food, or enjoying a meal with my family again. Even drinking, chewing gum, or sucking a breath mint was out of reach as anything would set off my wild vomiting, severe heart burn, and horrendous acid reflux.
In December of 2014 my health took a turn for the worst during a lengthy 22 day hospitalization for GBS, resulting in near fatal consequences after a reaction to an IVIG infusion that developed into Meningitis and severe V-Tach. After a week of Acute Rehabilitation to re-learn how to walk and regain my motor skills I found integrating back to my normal life harder than expected. I was unable to preform working functions adequately and had to step down from my career as a Montessori School Teacher. The year that followed held the deterioration of my lungs, and respiratory muscles, leading to the use of supplemental oxygen. My physician started me on drastic chemotherapy infusions which did improve my lung quality enough to leave my tanks for a period of time.

Everything changed when my specialist in Seattle referred me to a Clinical Trail for severe, treatment resistant autoimmune patients. I was to undergo an Autologus Hematepoietic Stem Cell Transplant; a two month process in which my own stem cells were harvested, my immune system was completely eradicated with unbelievable amounts of chemotherapy, and then a new immune system was en-grafted - made by my own cells. This process is also known as a Bone Marrow Transplant. After weeks of evaluations I was found to be a candidate in Chicago! I had my transplant January 3rd 2017. It was the absolute worst experience of my life, but I have already begun to see the miracles it can wield! No I am not cured, but I am in a much less dire situation than I was this time last year, and i hope to continue to improve!

October 21st 2011 - I remember not as the day my life became sealed with an expectation date, but as the day I truly started living. My eyes have been opened to so many wonderful things in this world since being diagnosed. Having your mortality be so evidently tangible sets much into perspective.
I am so often asked how I keep a sunny disposition while fighting an immensely devastating disease that has such a poor prognosis. I am fully aware that this disease does not intend to leave survivors and that at 25 years old I am probably not going to get as many years as I had hoped. 
There are three simple things I have learned over the last three years that keep a smile on my face, a fighting spirit intact, and a gratefulness in every circumstance.

        1. I do not compare myself today to the old me, the Pre-Sickness Chanel. I am not that person any longer. I have changed, I have grown, and I have lost so much of that life. To compare the two would be unfair to myself. You emerge a different person on the midst of great tribulation. Things that used to bring me so much joy are unattainable to me in my present state, even little things like enjoying a meal or singing a song. I have to accept the new me, the Post-Sickness Chanel, as that is who I am now. I must focus on what makes me happy in the present, what I can accomplish today. Comparing will only bring misery and sorrow, but focusing on the present and what I can achieve will bring me joy and satisfaction. 
         2. I like to focus on what this trial has given me and not what it has stolen from me. I have blossomed into a women I truly have admiration for, a women that I never knew I could be. I have found an overwhelming strength that I had no idea even existed; without this devastating disease that strength would have never emerged. I have met and created relationships with some of the most courageous, beautiful, and strong women who walk this earth! They fight this disease with a grace unlike any. I am eternally great for for my Scleroderma Sisters. This trial has also helped me recognizing the beauty in humanity, friends, and family which without I would be lost. 
         3. Many people have told me if I just pray to be healed of my afflictions I would be disease free. Well, after years of praying for healing that never came I felt alone, unheard, and distraught. 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 then understood 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 can assure you that once I changed the way I prayed to my Heavenly Father my life become a much more tolerable place. 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."

Since stepping down from my beloved career path as an educator due to health complications I have become a support group leader, patient advocate, public speaker, and illness blogger. These new ventures have opened incredible doors in my life and brought about tremendous changes in myself as an individual. I am now a stronger, more confident woman -- even in this broken body. I feel I can make a real change in the world through this new medium, bringing awareness and compassion to those battling similar illness. While I do not find much "happiness" in this trial, I find great joy in the blessings I see it reap. Life becomes so much simpler when you let go of what you intended your life to be and instead celebrate all that it is. 

Hugs, 
Chanel White

82 comments:

  1. While I am so very sorry you are goi g through this, I rejoice in your strength...His strength. I deeply respect and admire your heart in all of this.

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  2. Posted the link to your "oh.." article in several of my rare disease support groups...very well written and quite a few people jumped into conversation. I very much enjoyed the post above...I know I have spent more time praying for a cure and for the diseases to be gone than I have for strength to cope with what will not be curable for me...and it was VERY hard for me to let go of "my previous self." I still struggle with that. I am glad that you are further down the road on acceptance than I at such a young age. God bless you! (MCTD, Sclero, Cryoglobulinemia here so can very much relate)

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    1. Hello Darlene! Thank you so much for taking the time to read, and share my journey with others. I am so sorry to hear you battle MCTD yourself... It is such a horrid and debilitating disease. Sending you good vibes and hugs!

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  3. I will be following you blog! I was diagnosed with Pulmonary Hypertension in October 2014 - a progressive, incurable, killer. I am learning to transition to a new me. For a long time I felt like I was becoming a shadow of my former self. That is the wrong attitude. I am being molded to become a new me!

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    1. Hello Peg... Welcome to my blog! Accepting the "new you" is the absolute hardest thing I think anyone facing chronic illness encounters. I am sending you good vibes and hugs through your transition! :)

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  4. Thank you for sharing your journey with all of us. Your words in this blog have truly been a blessing to me. God has used you in a mighty way today!!

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  5. What a powerful and moving testimony about prayer. God has granted you wisdom beyond your years. Your words are a true blessing.

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  6. Dear Chanel I am nearly speechless with admiration for you! You are like a diamond, formed by devastating forces into something so rare, and much more beautiful than it would have been. You spark rainbows of color that stun with beauty and light up the dark scary places. It is terrible to hear of your suffering, but amazing to see how you shine ! Thank you, thank you for giving of your precious energy to spread your light!
    Vivia Boe, Seattle.

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  7. I am humbled by both your journey and your acquisition of peace from our Heavenly Father. I too struggle for peace in my own and my daughter's medical journeys but now know I have been praying for the wrong things. You and your blog have been a holy blessing to me today. I will remember you in my prayers and I will revive my petitions to my Lord starting this very moment. God bless you and your family.

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  8. Your words give me joy, as I am also battling many chronic illnesses, both physical illness and mental illness, and they are life long. I will not die of my illnesses, though. Still, sometimes it is so painful to reflect on my old life, before my chronic pain got this bad. It's easy for me to feel that my life has been "stolen" from me. However, I'm a different person because of my chronic illnesses, and I can assure you that for the most part I'm a better person for it. I'm not Mormon, or even Christian, but I'm still find your faith very inspiring. Your blog is uplifting, and I plan on reading it all. ((Gentle hugs))

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    1. Thank you so much for your kind words Amy! I wish you luck in your journey with EDS, I know that can be one hell of a disease! Hugs from one #spoonie to another! :)

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  9. Saw your article on Yahoo and from there moved on to your blog. Praise to the Almighty for giving you such strength and will power. your story is so motivating and jerks one awake to appreciate every blessing that we are continuously showered with, that we take so much for granted. Thanks for sharing it with us. May God keep you in His graces.

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  10. Dear White,
    I read the entire writings of you. I am so sorry. Today I become speech less and word less. I am quite an emotional person and so tears are coming out for last half an hours and it is not stopping.
    I salute YOU and your husband Noel for being so supportive to you. I can only imagine the pain through which you, your husband and your entire family and friends where going through. May GOD give you strength and the power to go through all of these.

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  11. hats off to your/his strength.......

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  12. Hey Chanel, tears just rolled my eyes not out of pity or sadness, but out of courage you carry through our God Almighty.Till now I thought there can be no one like me going through things which i never wanted to - health, wealth, happiness & peace out of life. I am wrong, your strength and courage through God helped me to re-think. You have actually given me the strength to sail through. These happened only when I saw what your going through your eyes. Its is actually painful, but the courage - HATS OFF now words. At a young life, you have grown to be a wisest i have never seen. I am sure Almighty will be with you giving you the strength to strengthen others. Am sure I will meet you one day. Husband being next to you, is something really great. In these disturbing days, difficult find partner supporting. My HATS OFF to your other half. You will be my prayers everyday going forward. Will share this in our congregation as well, and the entire church will pray for Joy.

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    1. Thank you so much Davis, you kid words brought such a smile to my heart!

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  13. Hi, Chanel!!! I'm Bete, from Brasil. Sorry, my english is very bad (trash 100%). But I'm impressed with your story. You are very warlike . Be strong !!! Kiss :-D

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  14. Greetings Chanel: I found your blog quite accidentally and I am sure it was a "God thing" and He led me to you. :) You have an amazing gift for the written word and you make great videos, too!
    I am sad to learn of all the medical challenges you endure, I want you to know I completely understand the challenges of chronic illnesses as I suffer from numerous bowel and stomach issues, the worst being debilitating gastroparesis. I completely relate to the exhaustion of daily life or venturing outside the home for normal activities as I never know when diarrhea or vomiting will rear its ugly heads...however, I am quite proficient in knowing where ALL the restrooms are in my county in PA! And I have a standby bag with extra everything in my vehicle!
    I understand what you mean by relating to the "new" person you have become...my new person is stronger, funnier, and more humble...she has truer friends and a better faith ...and she is so much more compassionate! My new person is also a better advocate for her own healthcare, especially with ER staff! I kinda think my new person is pretty spunky and wonderful!
    I want you to know you have been added to my daily MUST read and prayer list. I think you, Chanel, are a really wonderful spirit...great finding you in your blog space! Blessings!

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    1. Hello Susan! Thank you so much for reading my blog! I am so happy to connect with other chronic illness suffers! I am so sorry you also deal with gastroparesis and bowl issues, they truly unbearable diseases! It sounds like you have adapted so well and emerged a stronger woman! I love that "spunk" we all seemed to be blessed with after illness strikes ;) Keep fighting girl!

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  15. Hi Chanel! I'm Bianca -34 ears- and a little daughter -4ears. My english it's verry bad but i whill try to be understood. On 30 May of 2014 i was diagnosed with breast cancer with metastasis on the bones and brain and it's not curable but the treatments are keep me alive for as long the budy, the cancer or something permit me be with my sweet family. My live its most off the timp in the bad or hospital, i m vomiting all the tymp, i got pains but i m so happy because i m alive and i can see my little family evry morning. I whas a strong whomen and energic one and know i barelly can go to the bath room by my self but i m happy because i m whith my daughter and sweet hysbund so if i m going to die tomorrow i whant to be happy. I never believe that so smaal things can make me happy. Your blog it s great and i whill read more and i whill write you sometimes if i m not molesting you.

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    1. Hello Bianca, thank you so much for contacting me! I am so sorry to hear about your battle with Cancer, but I am so glad you have found happiness in your family. Family truly is the wealth of this world. I wish you pain free days! Hugs from USA!

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  16. wow just wow.Beautifully written chanel. I'm a fan of your blog....

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  17. Hola Chanel, que lindo que hayan personas con tu fortaleza. Quería compartir este enlace contigo http://www.natividad.org.ar/ , es de una Parroquia de Argentina. Al frente está el Padre Ignacio proveniente de la India y ha ayudado a sanar a muchísimas personas con enfermedades crónicas y no tanto. Es un servidor de Dios. Dedica su vida a Dios ayudando al prójimo dejando que Dios obre en él y Bendiga a muchas personas. Seguro podrá allanarte el camino y orientarte , te aseguro sabrá exactamente todo sobre tí. Sabrá lo que tienes aunque no se lo digas. Te sugiero que te contactes con él o algunos de los servidores para poder pedir un turno y puedan asesorarte en lo que debes hacer. Espero puedas contactarte y todo salga bien. Felicitaciones por no bajar los brazos y seguir con la Esperanzas ante las adversidades. Dios te Bendiga a ti y tu familia en todo momento y en todo lugar,
    As I did not know English this translation with google translator:
    Chanel Hello, how nice to have people in your might. I wanted to share this link with you http://www.natividad.org.ar/, it is a parish of Argentina. In front is the Father Ignacio from India and has helped heal many people with chronic diseases rather. He is a servant of God. He dedicated his life to helping others God letting God work in him and bless many people. Allanarte insurance may orient the way and, I assure you will know exactly everything about you. You know what you have but do not tell. I suggest you contact him or some of the servers in order to make an appointment and can advise you on what to do. I can contact you and hope everything goes well. Congratulations on not to give up and continue with the hopes in adversity. God bless you and your family at all times and in all places.

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  20. Hi Chanel,

    I have many of the same issues that you have. My main problem right now is my GI tract. I have little to no motility from esophagus to colon.

    You are going through so much at such a young age. I admire your writing and will continue to read more of your blog. You are in my prayers.

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    1. Hello Kris, I am so sorry your battling GI dysmotility as well. It is truly horrible. I hope you doctors can find something to bring relief! Hugs to you my scleroderma sister!

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  21. Man that's a long list of 'issues.' My experiences are much more minor, though being undiagnosed about 50% of my life can still be a little frustrating.

    I'm not writing about me, though. I admire the way you're holding on to the beauty in life, even when no normal person could imagine being ok with the things you handle every day.
    I'm not giving you the whole 'you are an inspiration' speech, :) only thanking you for sharing and saying that I love your attitude. I hope the rest of your life is as healthy and pain free as possible.

    It's funny that when someone says 'put it in perspective, they have it a lot worse than you,' it makes my blood boil to have that attitude imposed on me. But sometimes, when I'm in the right frame of mind, I'm willing to compare to someone with similar issues and recognize all the good things I still have. Yeah, it's tough. Yeah, I spent a good chunk of my high school career as a professional patient too. But today-- I can eat whatever I want! Not so yesterday! I realize, seeing how much more challenging life can be for others, that G-d gave me no more pain than I can handle.

    Which makes you pretty strong. Hope this wasn't patronizing. Keep up the great life!

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    1. Hi Miriam! Thank you so much for taking the time to read and comment! Your words were perfect! :) I can just tell you totally get me, and my frame of mind by this short paragraph! No one quite understands a chronic illness patient, like a chronic illness patient! lol I am so sorry you too are battling disease, and am so glad you have found some relief later in life. Sending you good vibes! Have a great day!

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  22. Chanel, Thank you so much for your website and your wonderful attitude. I found you by "accident" today but I really feel I lead here by the Lord. I work in whole-healthcare or natural healthcare. I see those who have been told that there is no more hope and no more that can be done for them. I hear on a daily basis "Why doesn't God hear my prayers for healing?" every day from my clients. My heart goes out to them and I tell them that all we really can pray for is His will to be done and to have some understanding of what we are to learn from this path. I want to use your website for my clients. I want to send them here to help them not feel so alone in their journey and to gain strength from your understand/wisdom. Thank you for being there and for holding on. Blessings to you and your family.

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    1. Hi E. Hanson,
      Thank you so much for taking the time to comment your uplifting words! I am so glad to hear my blog can be of assistance to you, and your clients! I feel I have grown immensely since finally releasing my will to that of God's. It can be a trying task, but one that is so rewarding! Thank you for the work that you do!

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  23. Boa tarde Chanel, meu nome é Erika Luize, tenho 22 anos sou evangélica e moro em Brasília na capital do Brasil. Ontem estava lendo algumas coisas online, quando de repente, do nada te achei (...) e que de repente bom. Você é uma pessoa incrível, uma pessoa com tamanha fé e segurança em Deus que chega á ser surreal, e até inacreditável. Eu estava meio pra baixo, triste com a algumas coisas que me aconteceu há alguns dias, e você incrivelmente me deu " forças " para não desistir. Chanel, eu só tenho que te desejar o melhor de Deus na sua, e que você continue essa mulher sábia, e temente ao Senhor, e que a vontade do Senhor possa vir se cumprir na sua vida, você merece tudo de bom que possa existir. Parabéns pela família abençoada que você tem, o Senhor te entregou não só um esposo, mais também um amigo fiel, continuem assim. Você é linda por dentro e por fora. Ah, eu amei ter te conhecido, por mais que não seja pessoalmente, já te amo muito, e torço para que dê tudo certo com você, que Deus possa te dá não só saúde, mais muitos anos de vida. É isso, obrigada por existir, e nunca desistir, beijos, de sua amiga Érika! s2

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    1. Hi Erika! Oh my goodness your comment is just so sweet! Thank you so much for your incredibly kind words. I am completely touched by your beautiful thoughts. You sound like such a wonderful young woman! Hugs!

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  24. Hi Chanel ! Oh my God, your story touched me a lot ! You are so beautiful and so strong ! Keep going, you can do it ! If you need something i'm here, don't forget that !! Kisses, a lot of kisses !! <3

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    1. Aw thank you so much! You are just so so sweet! :) Hugs!

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  25. Oi Chanel, me chamo Keivisson, sou brasileiro, e quando fiquei sabendo da sua história simplesmente me emocionei e decidi pesquisar mais. Cheguei ao seu Blog, onde conheci mais da sua história, o que tenho a te dizer é: não perca as esperançar, não deixe de ter fé, "Sem cura" é o que dizem, mas eu acredito que você pode vencer essa batalha. Você ainda tem muito o que viver, tanto você quanto o seu noite, de coração espero que você dê a volta por cima!

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  26. Your words are my words. Thank you for speaking them.

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  27. Chanel, You are amazing and I thank you for sharing so much of yourself with the world. I am a proud mom of a most beautiful, smart and fun-loving girl named Lauren. She has been fighting her illness since 2012/age 11. She is now 14 and diagnosed with Celiac Disease at first and finally after years of many wrong turns: Dysautonomia/POTS (there is talk of connective tissue diagnosis but nothing confirmed as of yet.) Lauren has been through so many tests, procedures, drugs and hospital stays; over the years-we had no idea what was wrong! Celiac disease should not have these kind of complications!

    Currently, She suffers with severe chronic pain daily and hasn't been able to keep food down for almost 3 years. She has a newer GJ tube after an NJ for 2 years, and has problems with the new tube too-always a struggle it seems. At times we are find it hard to stay positive and happy because we don't understand how can this be? Everything was fine for 11 years of her life and BAM! I am sure you and many others have had similar thoughts and experiences!

    I pray for Lauren every minute and wish i could switch places with her. My prayers go out for you and every single person living with these illnesses; I know first hand how hard it is. I know one thing: spreading awareness is good and sharing your stories not only helps yourself but help others understand what they may not be able to see.

    As our family digs deep to pull out the positive in every way we can. We take simple pleasures much more seriously and find new fun in things we never would dream of! Something that has been brewing since the beginning of all of this is the creation of Karing Kids. This non-profit is run by kids working to bring joy to other kids who spend their days in the hospital. (We know exactly how boring that can be!) We'll let you know when our web site is up and running! Stay tuned!

    We send daily prayers out for you.

    Sandy

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  28. Chanel,
    Your journey speaks so loudly of one that trusts in the goodness of God, despite these extremely challenging circumstances. You are living in the empowering grace of God and I am blessed beyond words to become acquainted with your journey. You live a life laid down and you glow with joy. May the LORD continue to fill you in every way. I ask His power to meet you in every way, and His love to fill you to overflowing. Thank you for sharing your story with us. --Jina Hinson

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  29. Thank you so much for sharing your story. It makes me stop and think of how blessed my life is and to be thankful for every day I have on this earth. You are so strong, beautiful and such an inspiration. Heavenly Father put you here to lift others and bring them hope. I pray for you to have peace and comfort and to know this earth life is a short time in our eternal existence. You will be pain free and have a perfect body and mind when the time comes. Thank you again for lifting so many. Love your smile!

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  30. Your YouTube video brought me to your page. In 1987 my best friend died of Schleroderma and Lupus - she was 47. I will carry on and read your blog and am pleased you have found a way to deal with life now without looking back. I too mourn the young girl you were but am so proud of the young woman you have become.

    I have an older friend now in her 70's on a journey similar to yours. She was given 3/6 months to live but 7 years later is doing the same as you. Helping others. Her illness is Mesothelioma. She is another inspirational woman.

    You may like to read her blog. https://rayandmave.wordpress.com/

    I will also send her a link to yours

    My thoughts are with you and I wish you well for the future. xx

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  31. admirable wouldn't be a strong enough word to use here
    sending you joy today mixed with hope and a hug ♥

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  32. Chanel, your an incredible person. What a real inspiration you are and I absolutely love your uplifting spirit. It's a joy to see your optimism and zest for life while faced with such an agonizing journey that I imagine is both physically, mentally and emotionally challenging.
    I'm fortunate to have my health and like most people, I tend to take it for granted. In fact, you've helped me to realize how much I take for granted. Just the simple act eating food is an ordeal for you and this has given me perspective. After reading your story you've lifted me out of my self-pity-pot and given me the energy to face a few problems I have in life.
    Chanel, Thank you for your wonderful blog. I'm sending you back some good vibes and a hug

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  33. Chanel, you are a strong brave, and with or without hair, a beautiful young woman. All my love sweet heart. May Jesus hold you and love you. Ken.

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  34. I am so inspired by your words, thank you so much for sharing your story, what a beautiful and courageous woman you are.

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  35. God bless you Chanel! Keep your Faith and you will never be alone!! I will be following your blog too!!

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  36. Chanel, I happened to come across your blog and it has touched me deeply. I am in total awe of the way you have handled such a heartbreaking and awful situation and at such a young age. I am lucky to have my health but have been around those that are much less fortunate and don't. Your blog and other work is so important because it gives other people suffering support and strength to continue their fight. It also opens the eyes of healthy people like me to the suffering and hardship people less fortunate are enduring every day and it makes me realise how much we take for granted and makes me care and want to make a difference. From the bottom of my heart you are an incredible, beautiful, inspiring young woman. God bless you x

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  37. Chanel, I happened to come across your blog and it has touched me deeply. I am in total awe of the way you have handled such a heartbreaking and awful situation and at such a young age. I am lucky to have my health but have been around those that are much less fortunate and don't. Your blog and other work is so important because it gives other people suffering support and strength to continue their fight. It also opens the eyes of healthy people like me to the suffering and hardship people less fortunate are enduring every day and it makes me realise how much we take for granted and makes me care and want to make a difference. From the bottom of my heart you are an incredible, beautiful, inspiring young woman. God bless you x

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  38. You are an amazing person. I have had a lot of challenges in my life and been so angry and bitter. You have such a tough journey and yet seem not to blame God or hate life. I hope u know that u have every right to hate life and I think it's amazing that u don't and that I wish I could pick ur brain and maybe find some peace myself.

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  39. Dear Chanel, Thank you for bravely sharing your glorious faith in Him!
    I am praying for angels all around you each and every day! XXXOOO

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  40. When I was 15 I was diagnosed with SLE. At 22 I was placed on federal disability. At 41 I was diagnosed with Scleroderma. My body has been at war with itself since I was a child. For the 1st time in my life I not only fear that this disease will take my life but I am also terrified of what it will do to my body, on the inside as well as visable on the outside before it does.I receive biweekly treatments to help me breathe better, there are no imporovment as of yet. Every morning starts with me gagging and throwing up. My skin is starting to show symptoms and my hair is falling out. I have had 2 heart attacks. Everyday is a struggle to survive and not bring to people in my life down. Some days are harder than others. And some days it's just impossible to put on that brave front that everyone seems to expect of me. I applaud you for the grace and beauty that you fight these diseases with. You are truly an inspiration. Hugs...

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  41. I shed a tear looking at your video. But just keep hope. May Allah shower you with health and blessings

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  42. My niece who is now 30 years old was diagnosed with Scleroderma when she was 5 years old. She had years of steroid treatment and physical therapy on her hands, arms and legs. Eventually, the disease stopped it's progression....no doctor would say "remission". However, auto immune diseases run in my family. We have 3 members with Celiac Disease, two with Lupus, one with Scleroderma and one with Sjogren's Syndrome. It's awful to watch so many people struggle with daily pain. Good luck to you.

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  43. My niece who is now 30 years old was diagnosed with Scleroderma when she was 5 years old. She had years of steroid treatment and physical therapy on her hands, arms and legs. Eventually, the disease stopped it's progression....no doctor would say "remission". However, auto immune diseases run in my family. We have 3 members with Celiac Disease, two with Lupus, one with Scleroderma and one with Sjogren's Syndrome. It's awful to watch so many people struggle with daily pain. Good luck to you.

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  44. Chanel...thank you for your story!! A friend shared a video of yours on Facebook. You are very brave, good for you!!! I'm sure any health issue this severe is a struggle and you face it very well...with a smile. :) I'm curious but has your doctor ever suggested supplements to help? Many auto-immune diseases start in the gut and getting that healthy helps them tremendously. I have friends with Lupus, Fibro, MS, Celiac, Graves, etc that have found help from supplements provided by Plexus. They target gut health. I am not trying to sell you...please don't take me the wrong way. I just feel impressed to share with you. I hope all is well!! If you would like to talk further you could email me @ melanie_80@yahoo.com. I wish you all the best health and success!! You are an inspiration!!

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  45. Chanel, you amaze me. I have cystic fibrosis, juvenile RA and severe GI dysmotility. I wish I had even a fraction of the courage, strength and faith you have. Facing the fact that my terminal illness has robbed me of so much of what I enjoyed in life and that it will continue to do so until I die is not easy at all. You have inspired me to keep going and I've decided after reading your story that I do not want to waste what's left of my life focusing on the negatives. I will definitely be following your blog from now on. You really are amazing!

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  47. Thank you for such a wonderful story and of your strength and courage. I've have AS, CKD and PKD. Both kidneys were removed in April 2014 at a total weight of 16kg. Dialysis every other day for the next 22 months produced migraines, sickness and a general feeling of being unwell. February this year saw me have a transplant. Between February and now (May 2016) I have had to return to hospital 4 times because of infections, partial rejection and retention. I'm told this is normal and I guess if the kidneys going to last years then it's worth a few months of being in and out of hospital. Together with this is the AS (Ankylosing spondylitis) which is a spinal problem which reduces movement and produces a lot of pain and requires constant pain killers on top of all the antirejection drugs for the kidney. Do I sit back and say "I'm too ill to do anything today or do I "Get busy living." Your story has helped me confirm that decision I made a couple of months ago. You've got to get on with life and make the most of the time you've got. I don't know that I have as much courage as you, but thank you so much for you inspiration xx

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  48. I lost my wife to this disease in less than 2 years and she was only 34. I admire your courage Chanel and I'm praying for your recovery. Hugs

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  49. Thank you for sharing your story and how you have found joy in it. I do not have an invisible illness. My story is one of multiple pregnancy losses, leading to five babies in Heaven while I raise two on earth. But what you write about accepting the new you and allowing Christ to work through your weaknesses resonates in my heart, too, as that is how God carried me through the emotional pain of saying an early good-bye to my children and now uses me to reach out to others. I wrote on my blog about how God uses our sufferings to reach out to others, even when their suffering is different, and I see you doing that here. Our stories are different, but God is not, and at the core we are not either. I will be following your blog in the future and praying for you. (My blog article is: http://thissideofheaven.weebly.com/home/comforteven-when-your-story-is-different)

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  50. Hi Chanel, you beautiful human you! I thank you for putting your story out there and being open to your transformation and helping so many others in the process. My son, Jackson, was stillborn this past December and I feel like I could change a few words in the section of the three things you have learned in your journey and it would be mine. I want to share it with the other bereaved mothers that I have been in contact with since Jackson died. You are helping so many, not just those living with a terminal disease. Love to you from Cambridge, NY.

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  51. You are an inspiration, Chanel. Thank you for sharing your story and reminding me that the Lord is always in control and that He is the way to peace in all situations. God bless you, Mdear!

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  52. Chanel, I am at a loss for the right words (rare for me...lol) after reading your article. You are quite a woman. You are not only strong, but wise beyond your years! I have several diseases that are not cureable, but treatable, my latest diagnosis being Chronic Myeloid Leukemia. My illnesses have changed me and how I live my live, but I am strong and try to be thankful each day I'm given. I know you have and will continue to inspire many. You are in my prayers and I wish for you peace. Love! 💜

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  53. kichel123@hotmail.comJuly 8, 2016 at 9:11 PM

    I saw you on love what matters, on face book. That took me across to your blog. You are truly an inspiring young lady. Your testimony of faith in the Lords will is amazing. Although i don't have a terminal illness, i do suffer with depression and chronic pain from an accident in my teens. I also have endometriosis and pcos. You are so right in trying to be the best you, as you are in this current state, rather then comparing your current state to the previous. So encouraging. Thankyou hun. And may our Lords and Saviour comfort and guide you in your journey. Xxxxxxxxxxxxxxxx

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  55. Well, you are a very gifted writer, and you convey your circumstances with some eloquence. Certainly, I, and others, admire your spirit. I have some technical suggestions. First, the font of your blog is quite small and light and a little difficult to read, especially for older eyes. You might consider a more easily read font. Second, most people will not know what some of the abbreviations mean. So it would be helpful to define all abbreviations when they first appear. Third, a few words seem slightly incorrect. For example, using "women" when you meant "woman". Do you dictate this blog and have it transcribed by another person or by software? I would suggest, perhaps, a proofreader, human or software, though either can be troublesome. I hope you will not be offended by my suggestions. I like your blog, and I wish you well with it, and, more importantly, I wish you well with your struggle with your disease.

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    1. Merlin, thank you for your suggestions, however; please understand I am one person -- and an ill one at that. My blog will never be perfect or pleasing to everyone. I am not a gifted speller, and cannot afford an editor. I write from the heart and in one sitting, which often is much like raw speech. I always explain abbreviations when needed, but sometimes do not have the energy. They are all googleable. Thank you for your kind words, but please understand I do not have the resourceful or energy to make my blog perfect, and I am aware of the mistakes. Thank you.

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    2. My intention was not to be critical for it's own sake, but I mean't to be helpful. The font seems more readable on an iPhone than on a desktop personal computer. I did google the abbreviations. I tried to offer helpful comments. I like your blog. I wish you well.

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  56. Hi Chanel! I ran across your video on Facebook and immediately knew you're a believer. The light of the Lord just shines from you! I am adding you to my prayer list. Blessings!

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  57. Chanel, your story is very riveting and inspiring. Having your world turned upside doe at such a young age and being able to find the strength to live everyday to the fullest is awe inspiring. Turning to your faith and living in the moment, as you do, is so refreshing and humbling. You inspire me to look at my struggles as something trivial and not worth being frustrated over. Thanks for posting and may God bless you!

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  58. Hi Chanel, thank you so much for sharing your story it is so inspiring and I'm really AMAZED for all you have gone through and the big and beatiful smile you face everything with. I am from Dominican Republic and I'm a medical student. I was diagnosed with a severe RA when I was 19, now Im 22 and have had dificult time but also I've learned about the strengh inside me and thanks to RA I've come to realize it. Your blog is such amazing and your story encourage me to never give up. Thank you so much for sharing. May God bless and guide you! Hugs! :)

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  59. Hi Channel,
    So often I hear people say that God has a purpose for making us suffer. However in the book of James it says this:

    12 "Happy is the man who keeps on enduring trial, because on becoming approved he will receive the crown of life, which Jehovah promised to those who continue loving Him. 13 When under trial, let no one say: “I am being tried by God.” For with evil things God cannot be tried, nor does he himself try anyone. 14 But each one is tried by being drawn out and enticed by his own desire. 15 Then the desire, when it has become fertile, gives birth to sin; in turn sin, when it has been carried out, brings forth death."
    See? So with evil things Satan is the culprit for laying this stuff on us. God. Thank you for taking the time to read this. I wrote this because you made the comment that this might be God's will for you. Sincerely,

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    1. Let me clear things up for you: God doesn't give us illness and disease, nor does He take pleasure in our suffering. However, when we fall ill it may not be His will to heal us because He know it can refine us spiritually, give us a means to prove our faith, and bring glory to Him. Have you ever read the Book of Jobs? An innocent, faithful man is aloud to undergo horrific trials such as physical illness and the death of his family while the Lord stands by -- because The Lord wanted him to prove his faith. No, his trials were not from the Lord, but the Lord did not take his suffering away because that was not His will at the time. However, after he proved his faith sufficiently the Lord blessed him abundantly. If you need another example read about the Apostle Paul and the "thorn in his flesh." The Lord aloud Paul to suffer so Paul would lean on the Lords strength and not his own. No, the Lord did not give him the thorn, but he aloud the thorn to stay there so Paul could learn from the situation. This mortal body is on earth solely to prove our devotion to the Lord and become refined spiritually.

      I hope you truly do research into this topic, and that I am the last person you berate with such hurtful accusations. Also, please read a story in its entirety before commenting next time, as I never said 'disease and suffering was the Lords will for me,' but simply 'that His will is not for me to be healed at this time.' Just like Job and Paul I am being refined, and by so doing bringing Glory to Him.

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  60. HI Ms. Chenel,
    I am a middle schooler who was recently diagnosed with moderate to severe gastroperisis. I got approved for a nasal feeding tube, and am waiting for the last steps to be taken. I was wondering about the backpacks. Do you get to choose your own? If you have any tips or tricks that would be great
    Thank you- Ceci

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  61. Hi Chanel,
    I saw you on a video on FB tonight and felt compelled to write. I feel the same way as your video - you never know what a person is going through under their clothes, makeup and smile. Judgment should be saved for God. I am really sorry of all the struggles you have to go through. Especially at such a young age. But I'll tell you something - I am currently in the middle of bouncing from one rheumatologist to rheumatologist to see whether I have Lupus or something else (my anti DNA ds test was very high). All I know is I'm in pain, have been for two years and am terrified. I know in my heart I'm not right. And I've been to the bottom of obsession about my health, which led to depression and severe anxiety so I could not even function normally for 1 1-2 years. I'm slowly trying to change how to think. My point in all this is first of all, I'm glad you have such a great supportive network, that's so important as I know I'd be so much further ahead of I did. Secondly, I greatly respect and admire the goals you sought in how to live your life, and I intend to keep them up on my wall as a way for me to remember someone who is also suffering, and her strength and will as listed. So Thankyou for that. Also, don't ever stop fighting, kick this disease ass (excuse that comment), because I believe with positivity, will and God, that anything is possible. I've seen it and that's what got me back up out of my despair to keep on moving again.
    All the best, and thank you again for sharing with us.
    Sheryl

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  62. Thank you for sharing your journey with this illness. I have a friend whose sibling had systemic scleroderma but luckily her disease has went in remission. I hope you get any kind of relief or healing from this disease. I actually came across your blog when I was reading about scleroderma. I too am suffering from autoimmune disease and a rare one as well. After three years of living in agony we are finally getting some answers. I too was struck down in the prime of my life in my 20s when I was engaged to be married as well. I am now 30. I had a recent Ana test with centromere antibodies off the chart high and voltage gated potassium channel antibodies. The voltage gate potassium antibodies are very rare they can cause autoimmune epilepsy and chronic muscle spasms and twitching. I have all of this. i read it seems as though from what inted centromere antibodies is almost always associated with scleroderma in over 95 percent of cases and rarely autoimmune liver disease or cancer. but I have yet a diagnosis on what is causing this. In addition to the neurological problems I have arthritis and joint pain and muscle and bone pain. pain is the normal for me. The body pain is agony. I have tried to Get better through all organic diet and I'm still sick. Nothing changes the outcome. I can not drive a car and Iost my job due to the illness. I envy those with support because my family and friends seem to have forgotten me. It seems as though they don't want me around to see me wasting away or maybe it's hard to keep a smile and be fun like I was before but I so very wish there was someone there on the side. It gets to be lonely when your chronically ill. I am awaiting being seen at The Mayo Clinic pending insurance approval. I was told this was the only clinic that could help. I constantly have thoughts running in my mind am I going to die or be disabled for the rest of my life will I be in a nursing home or will I get better. Autoimmune disease are so cruel. I think I'm at the point where if this kills me if I die from the treatment or the disease I'm ok with it but I'm still not excited by any means. I'm wondering if you have ever tried plasma exchange? It is a treatment for some autoimmune disease to remove harmful antibodies for the plasma? Is it a treatment that used or works for scleroderma? I have tried ivig and steroids and the diet changes and a number of medications and this was mentioned before with me. Thanks again for blogging . hope for any kind of healing for you And for the stem cells .

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  63. Dear Chanel,
    As someone impacted by chronic illness, I want to say thank you for sharing your journey. It has encouraged and enlightened me, and I'm sure many others. Praying that your stem cell transfusion goes great and I look forward to reading more about your courageous fight. AND thank you for helping me to accept the new me, illness and all.
    Blessings and gentle hugs,
    Donna Skelton

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  64. truly inspirational keep on going

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  65. How are you doing these days Chanel? You look a little like me when I was young. I am now 70. I took a 3 day bath in oil and it really helped with the skin tightness and pain. The relief lasted for 2 1/2 years and is just starting up again. I don't eat solid vegetables as it would take more stomache acid to digest. And, I find if I eat beef or drink too much alcohol or coffee there is immediate, universal pain, on the skin. I am dibetic and I watch my diet as the gangrene in fingers, foot is related to diabetics without scleroderma. painful eruptions...indicates there is too much urine/acid/sugar in the body and it is looking for a way out. Drink lots of water to flush it. During the 3 day oil bath, I broke out in pus sacks, the size of quarters on my bum...sugar...perhaps the oil prevented the exchange of gases and it came up with such a force it brought the sugar with it. My lungs feel heavier then ever, but not that bad. What can a senior expect? However, I plan to move to sand instead of dirt....further north as sand does not swell up into the sky like dirt does. Well, I was thinking of you today...just wanted to let you know.

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