I have surgery coming up on Wednesday of this week. Feeling hopeful that it will work. I have an autoimmune condition called Systemic Sclerosis that attacks my esophagus, heart, and lungs. It's caused me to have severe reflux that has damaged my esophagus causing Barrett's esophagus and poor swallowing function along with damage to my lungs and vocal cords. I have lung nodules and damage in all 4 lung fields. We have done everything over the last few years to fix it and slow it down, but nothing has worked. I'm 41 with two young kids.
The doctors have told me if we don't stop the reflux from further damaging my esophagus and lungs, I will eventually end up with a feeding tube and most likely need a lung transplant by the time my kids graduate high school. They are 5 and 8.
They are doing surgery to reconstruct my lower esophagus, it's risky because it could further impact my swallowing function but the risk of not is far greater long term health wise. We are hoping the lung damage will stop from progressing and the esophagus will begin to heal if the surgery is successful.
It's all pretty scary, my poor mom is a mess with worry. If you saw me in person, you'd have no idea I was even sick. I keep upbeat about everything and stay busy with writing, art, home and kids. I've been very blessed in the last year as far as my illustration career goes and signing with Andrea Brown Literary Agency.
Being a part of this wonderful community of artists has been nothing short of amazing and I'm very thankful to have this place to visit as I spend my summer of healing watching SVS classes, reading, writing and enjoying my kids/hubby and some beach time.
We are thankful that we have found a doctor who is able to give us hope. If you have time to send out a few good thoughts for us this week, we'd appreciate it. My little family of four is in need of a small miracle.
Thanks, all and happy creating!
oh my gosh! I'm so sorry you are having to deal with this! Good luck and keep on being upbeat and staying strong!
WhiteboardJim last edited by
Wow, what an inspirational story of hope and staying strong, please continue creating happy images and we look forward to seeing more beauty being produced from your shining place in the world! I pray for a successful and productive surgery!
@Charlie-Eve-Ryan Thank you for sharing so openly about the difficulties you have been going through. With deepest sincerity we pray that you will receive the greatest care through your surgery and find comfort for you and your family and restoration & vitality coming through this.
All the best wishes to you for a great outcome! Hopefully everything will go well, and before you know it, you will be posting more adorable art that you created while relaxing on the beach
@Charlie-Eve-Ryan I will be sending you my best wishes and thoughts!
NoWayMe last edited by NoWayMe
I will certainly send lots of good thoughts! Probably not many people knows what systemic sclerosis is, but when I am not doing art, I work as a rheumatologist, so I know the devastating effets this disease can have. I wish you the best in your recovery!
smceccarelli last edited by
You are a true inspiration, thank you for sharing your story and your positivity in the face of challenge - to us and to the world with your art. Thinking of you and wishing you the best of outcomes!
Eric Castleman last edited by Eric Castleman
@Charlie-Eve-Ryan Wow! I can somewhat understand what you are going through. I have an autoimmune disease as well, which is incredibly rare. My immune system attacks my eyes, and because of that I am on steroids at different points throughout the year. It has also started messing with my back and my digestive system. Like you, it isn't apparent if you see me, but it is something I deal with every day.
You will be in me and my families prayers! Pleqse keep up up to date when you feel good enough to post here. I look forward to hearing how well the surgery worked.
You are in my prayers!!! Thank you for allowing us to add our good thoughts and prayers for your family! God bless you all! I pray you will heal.
aska last edited by
@Charlie-Eve-Ryan Iam in schock, cause your art is so happy and vibrant!:( Keep strong and believe it will be ok. I bet your art is a way of relaxing for you, so create more wonderful pieces. All the best for you and your family!
Leontine last edited by Leontine
Hey Charlie, ohh, how sad. But hey, you are very optimistic! Hope your surgery will help and you'll feel better soon! Keep your head up high! My payers are for you! xxx
@Charlie-Eve-Ryan Oh my goodness - I'm so sorry to hear that you've been going through this. You come across as really strong and positive - and I'm sure that will serve you well. All fingers crossed that the surgery goes well - sending hopeful thoughts your way!
Thank you all so much for the kinds words and thoughts, it is much appreciated.
@Eric-Castleman I'm sorry to hear of your struggle and hope they find a way to better combat the inflammation, stop further damage, and you find relief.
As @NoWayMe pointed out, Systemic Scleroderma/Sclerosis is especially devasting in many ways and most days I just thank my lucky stars that it has not disfigured my skin and I have full use of my hands and fingers. I'm still able to write, draw and hold my children's hands properly.
Once my body starts to heal after the surgery and can handle food properly again, we plan to flood my body with good nutrients and hopefully reset my faulty immune system.
Besides a few good cries with my mom and my husband, I owe it to my children to give them the best of me and I plan on doing that for a very long time.
My husband is my best friend. We met and danced our first dance together in the sixth grade. He made me laugh then and still cracks me up to this day.
The illustration of the girl with the teapot flower in her hair, not only looks like my daughter but that is her personality to a tee. I've called her my pocket full of sunshine since was tiny. She is an early bird. She bounces into our room in the wee hours of the morning, throws back the curtain and announces gleefully "it's good morning time, mama!"
She maintains that bounce and energy all day long. My son who is 3 years younger is just as sweet and always up for an adventure.
We share "good morning hugs" and off we go for another day. I couldn't get down about my health if I tried, I'm surrounded by too much light.
Thanks again for all the good thoughts everyone!!
@Charlie-Eve-Ryan Sending positive thoughts and healing vibes your way for a smooth surgery and speedy recovery!
DanetteDraws last edited by
Oh my goodness @Charlie-Eve-Ryan, I'm so sorry to hear of your health struggles. Sending you much warmth and positive vibes - I hope your surgery goes smoothly with a great outcome.
Mara P last edited by
Charlie Eve Ryan
Charlie, You will be in my thoughts, wishing you all the best and a quick recovery.
Thoughts, prayers, good vibes, all coming from the Parker house! Keep us posted.
Will Terry last edited by
@Charlie-Eve-Ryan Wow - so sorry to hear about this Charlie... Life is precious and we here at SVS have enjoyed having you in so many of our classes. Even though we've never met in person I feel like I know you. We'll be sending prayers from the Terry family over here. We know about medical issues in our family too... hugs.
DOTTYP last edited by
Hi there CharlieI dont know you butI am sad to hear you have this illness,Hope your operation goes really well and you recover quickly,I know you must be really nervous so I just wish you all the best and hope the doctors can get you back to health.