Chanel White
Seattle, Washington (United States)
CHANEL WHITE
Scleroderma Stories Issue 3
Please introduce yourself
I am an avid thrift shopper. I love vintage fashion and the enthralling hunt for a good find. Furnishing a house with second hand items is rewarding, and it gives a nice lived-in vibe. I particularly like old wicker shelves. I am also a dedicated pet mom and wife. I really enjoy spending time doting on my two kitties and betta fish. I’m also a bit of a daredevil… If I could start everyday with a skydive I would!
When were you diagnosed with scleroderma?
I was diagnosed with Systemic Sclerosis in 2011 after experiencing severe Raynaud’s, which led to a hospitalization for an infected digital ulceration. I often found myself hospitalized for ischemia and infections, and eventually the disease began to heavily reduce my organ function.
In 2014, I began to rapidly lose weight and was diagnosed with Digestive Tract Paralysis and malabsorption. I was placed on my first surgical feeding tube, which was a massive lifestyle adjustment but also an incredible life saving intervention.
Scleroderma went on to attack my heart and lungs, greatly reducing their proper function.
What medications or treatments have you tried?
My physicians have prescribed the gambit of medication, treatments, and procedures to keep my body functioning. I’ve endured everything from immune modulators to immune suppressants, from chemotherapy to clinical trials. I’ve had surgeries to increase circulation in my hands, and I’ve undergone a complete reset of my immune system via Stem Cell transplantation.
Unfortunately, due to the treatment resistant nature of my case, I do not experience a reduction in symptoms for prolonged periods of time on these standard treatments. However, I have hope for the future as medical science and research continues to evolve.
Have medical expenses affected your family’s financial stability?
Since my body requires consistent medical intervention for survival, whether it be nutrition, hydration, or medication, my life comes at a very high cost. Currently, I am incredibly blessed to have a health plan via Medicare that covers much of my needs, though the price of that plan, combined with my out-of-pocket costs, are excessively expensive.
My family has experienced excessive hardship due to the cost of my condition. When my husband and I were newlyweds, we found ourselves 80 thousand dollars in debt after my first hospitalization. We moved back in with my parents after only a few short months on our own, no longer being able to afford our rent. For years, we struggled with either putting food on the table or paying my medical bills. It’s a constant struggle between health and finances for Scleroderma patients, unfortunately.
How has your family supported you through the years?
My family has been incredibly supportive since my diagnosis in 2011. They’ve spent many nights on uncomfortable hospital cots and even found ways for me to enjoy holidays that typically revolve around food.
My husband has absolutely been my calm in the storm. I remember the first night home on my surgically placed feeding tube, I had a pretty severe emotional breakdown. I was crying, and the tube was leaking all over me – I just felt so defeated. My husband came over, clamped the tube, and calmly told me, “It’s not OK, but we are OK.” I knew from that point on that I could get through anything this disease threw at me as long as “we were OK.
How has scleroderma affected your work?
Currently, I am unable to work due to my rigorous medical needs. I am attached to a feeding pump 14 hours a day, and I require multiple trips to the infusion clinic each week for hydration. This makes any consistency in my schedule difficult.
Thankfully, I have found many volunteer opportunities that I can perform from home online, which brings a bit of normalcy and purpose to an otherwise medically dictated life.
What mindset changes have you made since your diagnosis?
I’ve found that being faced with mortality so early in life puts a lot of things in perspective. You truly realize that your time here is precious and should not be wasted on people or things that generate toxicity. After my diagnosis I’ve focused more on doing things which bring me joy instead of putting them off for another time. I learned to live in the moment and find satisfaction in quality over quantity.
Most importantly, I realized I had to stop expecting my life to be a certain way and instead accept it for what it was. That acceptance helped me find pleasure in what I could attain even while critically ill.
Do you have any goals or dreams for the future?
I would say my goal for the future would be to achieve consistent enough stability to give back to the chronic illness community. I would very much like to use my experience with scleroderma and general patient advocacy to help others going through critical medical situations, whether it be a career or a more expansive volunteer position.
Have you met anyone else with scleroderma?
Yes! I have surrounded myself with many individuals who share the mutual struggle of scleroderma. I am grateful to say that many of these people I consider dear friends. Whether it’s a quick FaceTime or a girls weekend, I can always count on these patients for validation, support, and authenticity.
Could you please share how and why you started your blog, “The Tube Fed Wife”?
I started a medical journal in 2012 on CaringBridge to keep my close friends and family up-to-date on my rigorous treatments. I found that writing out all my worries and day-to-day experiences with Scleroderma was incredibly cathartic. The more I wrote, the less I felt I was solely carrying this immense weight.
In 2015 I officially moved over to a traditional blog format as my audience grew. To my surprise, more than just my close friends and family wanted to read about my life! I was thrilled to find out that my experience was bringing light to other patients’ darkness. I’ve made so many incredible connections through my blog. It’s been a wonderful outlet for me over the years.
Are you in any other online scleroderma communities?
I currently attend the Sync Scleroderma young adult meet-up via Zoom. During the Sync young adult meet ups, patients from all over the world join together on Zoom to chat. We introduce ourselves and then just dive in. The conversation ranges from doctors and treatments to how you spend your Friday nights!
It truly reaffirms that just because we are chronically ill doesn’t mean we aren’t young adults who want to experience the prime of their life. I have loved connecting with other people who understand the struggles of this disease. It’s incredibly validating to create friendships based on mutual experience.
What is your advice for people with scleroderma or chronic illnesses?
My advice for other patients is to be kind to yourself.
A life-altering diagnosis, such as scleroderma, is not easy. Diligently practice self care, explore your emotional health, and listen to your body. Do not focus on the things you have lost or that are no longer attainable. Focus instead on what you can do, on what you can attain – even if it is entirely different than before. Instead of ruminating on what your life could have been, revere what it is and create happiness there.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us