Being Chronically “Elle”

“Come what come may, time and the hour runs through the roughest day.”

William Shakespeare

My name is Eleanor Ciampi, and I’m 20 years old. In March of 2017, I was in a car accident. I was okay, a few bumps and bruises, a mark from my seatbelt, and a separated shoulder. It was nothing that I couldn’t heal from, or so I thought. Two months later in May, fully healed from the accident, my arm no longer in a sling, a whole new set of symptoms started. My joints hurt so bad I had trouble going up and down stairs, and I was so tired that I felt the intense urge to sleep all day, the kind of tired that you could feel in your bones. My mom made an appointment with my pediatrician for the end of the month. I remember sitting on the exam table, waiting for my doctor, I was hoping, praying that I would be okay, that I would be believed, that my joint pain was nothing more than the wear and tear from all my years as a competitive gymnast that has bothered me for half of my life. My doctor thought that I was just tired, or maybe I could be depressed. Because apparently depression is the only reason that someone could be in physical pain, according to the medical community. She sent me for blood work, just “a precaution” she said. My mom got a call a week later saying I had titers for Lupus, and that I needed to see a rheumatologist as soon as possible. I had to wait for 2 months for my appointment, the longest, scariest, most stressful 2 months of my life. I cried in the office of the rheumatologist, that first appointment. I was so scared, so vulnerable. I don’t know what I would have done without my mom and sister. A lot of blood work, tests, and a colonoscopy later, I was diagnosed with Lupus in October of 2017. I’m one of the lucky ones, as crazy as that sounds. Most people suffer for years before being diagnosed, the average time is 3-5 years. I was diagnosed in less than 6 months. I was so relieved, I was started on a simple immunosuppressant, and I felt so hopeful. In January of 2018, I was diagnosed with CREST Syndrome, a very rare autoimmune disease. I tried to stay positive, but the medicine wasn’t working, and I was losing hope quickly. In May of 2018, I was diagnosed with Mixed Connective Tissue Disease, another very rare autoimmune/connective tissue disease. The doctors kept telling me to give the medicine time, “you have to be patient” they said. It’s hard to be patient when your pain is affecting every single aspect of your life. In July 2018, I ended up in the hospital with the worst flare I have ever had. I’ve never felt more defeated than I did that day sitting in the hospital bed. I spent the entire month of July in a flare, with no answers from any doctor. In September I started a new immunosuppressant, Methotrexate, which is a chemo drug. The first month I felt horrible, the side effects were so bad I couldn’t pick my head up off of the couch. As my body became used to it, so did I. In the worst flares of my life, I wasn’t able to use my hands, the joints were so swollen. I couldn’t write, brush my hair, or get dressed without help. After 6 months of Methotrexate, my hands have never felt or looked better, and I’m truly lucky. It’s not easy to be chronically ill. It’s frustrating, scary, sad, and hard. But I will never let my illnesses win, I will never let them stop me. This is my journey, my messy, imperfect, different-from-everyone-else journey. This is my beautiful life, and I’m living it everyday chronically “elle”.

Purple is the color for Lupus awareness.

9 thoughts on “Being Chronically “Elle”

  1. So proud of you for opening up and starting to share this extremely difficult part of your life!! You have all our love and support 💜

    Liked by 1 person

  2. Thank you for sharing . You are not alone . My daughter was diagnosed with MS on her 18th birthday after spending weeks partially paralyzed on the left side of her face and then another two weeks without vision . It’s been a struggle every day since not just for her but for the entire family . We are fighting and praying everyday that this disease may somehow disappear. Reading your article have given me renewed hope and I pray that you may beat this soon . I and proud of you and how well you are handling this . Please continue to write and I cannot tell you how much reading this has helped me understand how important it is to remain positive and that there is hope .

    Liked by 1 person

  3. I can relate to a lot of what you’re going through. I’m a couple years younger than you, but my pain also started months after a minor car accident. I was also a gymnast, and attributed my pain to that at first. I have a different chronic pain illness, but a lot of the symptoms are the same. I hope you continue to do better, you are really strong and amazing.

    Liked by 1 person

  4. Your strength, bravery, determination and perseverance are inspirational. My mother suffers from an autoimmune disease too and I have seen her go through so much testing and so many different courses of treatment. It is not easy but your strength and the love and support of your amazing family will ultimately be the best medicine of all. Thanks for sharing your incredible story.

    Liked by 1 person

  5. Thankyou for sharing your brave story. I have a 26 year old daughter who has just recently been diagnosed with with neuro sle. She’s been sick for 6 years and we never connected the dots until she became very sick in February this year and was hospitalized for 69 days. You’re an inspiration to me for sharing your experiences with this chronic desease. When she’s ready to deal with her diagnosis I will share your post with her. Continue to be brave and open about how you are surviving your journey.

    Liked by 1 person

  6. You are truly inspirational. I am currently suffering from a disease. It’s hard for me to talk about, but this makes it a little bit easier.

    Liked by 1 person

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