On the day of December 5th ,2023, I had no idea my life would completely change. Today, 10 months later, after a misdiagnosis, multiple hospital visits, countless testing, many specialists and 8 physicians later, I can take a breath with much relief, now that I have a name that comes with the grueling pain, I knew was real.
Dermatomyositis and lupus do not define me, rather I will learn to live with these two auto immune diseases, with strength, positivity and perseverance because I know that defines me, how I handle what has been given to me. The weight of the unknown and the horrible pain that I have felt for almost a year was feeling almost impossible, but God gave me the strength to push on, until one day in August I could no longer put one foot in front of the other. I landed in the hospital for 11 days where I had help getting back on my feet. Physical therapy and occupational therapy. I had a muscle biopsy, which is ultimately how I got my diagnosis, and I was finally sent home while results were pending. I’m home now and still bed/couch ridden, but I have been since January, so this isn’t an adjustment.
We have had numerous nannies’ during this time, which I’m incredibly thankful for. I refused to allow my illness to affect Lily’s wellbeing so I would drive Lily and the nanny’s places, story time, park, play gyms and I would sit in the car bound to my ice pack. My job, I was no longer able to do, but what I could DO was be present, so as you could imagine this was very heartbreaking for me. Skyler has been so wonderful and a great supportive husband and of course my parents have been so helpful during this life changing time, but it has been so hard being so far away with no help.
As of right now, we have an amazing nanny who we adore and are so grateful for the big next step is IVIG infusion treatments. I will have them at home and hopefully will get the strength back to get me walking without a walker. I have lost every ounce of muscle, as Dermatomyositis is an extremely rare auto immune disease that attacks your muscles. One of the many reasons my back and legs muscles ached so badly. 1 in 100,000 are diagnosed yearly in the U.S. This is partly why it was hard to get a diagnosis and the usual tests that show, didn’t in my unusual case. Most rheumatologists don’t ever see a Dermatomyositis case in their career.
The day prior to ending up in the hospital, I called my doctor with the Dermatomyositis diagnoses and demanded the biopsy. I saw two rheumatologists who didn’t believe I had lupus, because I didn’t fit the criteria. I knew in my gut that I did. I did not have anyone steering this ship. I found every doctor and specialist and did all my own research. Let this be a reminder to be your own advocate when it comes to your health! You live in your body. Fight, fight, fight!!!! Our medical system failed me. I was told by the first rheumatologist that I was okay, and I was most likely stressed from having a toddler and to do water aerobics and take anti-depressants. Don’t allow anyone, especially a professional tell you what you’re feeling isn’t real. My pain was real. I’m forever grateful for the team of doctors at WakeMed who believed me and knew my feelings were valid. They worked tirelessly on my case and boy was it humbling to not be able to walk without help, but they were wonderful nurses helping me along the way. I’m lucky to be alive, as both of these diseases eventually attack your organs. If the doctors just didn’t have a “one size fits all” mentality, I would have been diagnosed sooner than 10 months. Ten months of agony. What a shame.
This is not my entire story, there’s a lot to be told and a lot not mentioned so when I have the stamina and I’m well enough, I plan to raise awareness and share my story and video with the world. Stay tuned for this new life path I’m on and hope to help others just like I needed during this time. It’s the least I can do. No one is taking me down. I got lots left to fight!
Source: Autumn Faulkner
Autumn is 36 years old and a retired hairstylist of 12 years. She’s been married for 7 years and has a 3-year-old daughter. Autumn’s daughter is her IVF miracle, and she absolutely adores her. She completes them. Autumn has always been really into working out, specifically yoga and Pilates. She looks forward to the day she can do the things she used to do. Autumn knows she has the mental state and positivity to do so. Autumn goes with the flow with all the paths life has put her on. She makes the best of everything because that’s the only way to live the best life. Mind over matter. Our minds are stronger than we think.
You can find Autumn on Facebook and Instagram @life.with.DM.lupus
