Happy Wednesday x3
This is post three focusing on Lupus during Lupus Awareness Month! Lupus did not exist in my mind until meeting Samantha in 2013. Selena Gomez brought a bit more awareness to the world when she shared her diagnosis. (Selena, wanna play Samantha in a movie based on my book GTS one day?)
When I met Samantha, she was 23 years old. I learned quickly in our friendship her doctors often told her she may not live past 25. Did you read that? 25. I potentially had less than two years with my friend if their estimation was correct. In 2015, a few months shy of her 25th birthday, Samantha experienced a lupus flare that caused the need for a medically induced coma. Her words, echoing doctor’s words, screamed in my mind as I waited to find out if my friend would ever wake up.
We are a few weeks shy of Samantha’s 32nd birthday, today. She now spends much of her time bringing lupus awareness to her community. I hope to help her do this through my writing and eventually publish GTS, a novel based on our lives in 2015.
Samantha is graciously sharing a look into the 20+ years she has spent living with a lupus diagnosis. Here is a little bit more of her story:
From August 2001 to January 2002, I felt like a ping pong ball going from one doctor to another, not getting better, and not knowing what was going to happen next. In February 2002, I was referred to Texas Scottish Rite Hospital for Children in Dallas, Texas. I remember my parents driving during an ice storm to get to the hotel and being stuck on I-30 due to an 18-wheeler that jacked knifed and blocked traffic for over two hours.
We finally made it to my appointment and a treatment plan was made for me. I would be visiting the hospital every two weeks for treatment. This required me to leave my public school and start homeschooling.
My mom and I would fly to Dallas, get to the hospital just in time for my appointment, and I would get labs done, which I hated. Each visit would require me to be admitted to the hospital. My family was unable to visit as no one lived in the area. My mom would sleep a lot, leading me to make “friends” with inanimate objects. The IV pole with bags of Solumedrol and Cytoxan would be my unwanted companion for three long days. One ray of joy were gift bags full of goodies waiting for me, on the hospital bed, during each visit. They were full of little things to keep me entertained while in the hospital and things I could take home when I left. I felt grateful for the goodie bags because it got lonely there.
Eventually traveling to Dallas every two weeks became once a month, then once every other month up to my 18th birthday.
Can you imagine seven years of your childhood dealing with so many medical appointments? It’s not normal for most of us. I’ve seen Samantha happy, sad, angry, joyful, and so many emotions in between about her body and living with lupus. There have been days where she couldn’t imagine continuing to live like she has for so many years. She continues to manage the emotions that come along with a chronic illness. Nothing about this diagnosis is fair. Such beautiful people living in pain with no light at the end of the tunnel.
There is no cure for lupus. There is only one FDA approved medication specifically for lupus. All treatment plans are designed to manage symptoms and slow the destruction of healthy cells.
The Lubbock Lupus Group is raising money in their community to provide financial assistance to the lab at Texas Tech University completing research to find a cure for lupus.
I watched my friend speak so eloquently during a Facebook Live event she hosted, with a guest researcher from Texas Tech, about how she hopes her group can be a factor in what leads to a cure for so many. I’ve said it in the other two posts, but please follow the Lubbock Lupus Group on Facebook. Go back and look at all the posts during Lupus Awareness Month and learn information you may not have known about the disease. Connect your loved ones to an online support group that may not have one. There are so many great reasons to follow!
Lubbock Lupus Group – LLG | Facebook
Samantha and I discussed the possibility for more lupus related posts through the blog. Our reach is limited right now but please reach out if you would like to read more. The blog post has comment options, you can contact me via the contact button on authorarielpierce.com, email me at authorarielpierce@gmail.com and/or connect with me on Instagram.
Ariel Pierce (@authorarielpierce) • Instagram photos and videos
Would y’all want to hear more about Samantha’s experience with lupus? Would y’all want to hear more lupus facts? Would you want to know more about the research being done at Texas Tech University? Please let us know and we will work on it!
Samantha is using the hashtags #lupusawarenessmonth and #lupuswarrior within her Facebook group posts. Use these hashtags and help her spread awareness for lupus!
Ariel Pierce 