For the remainder of 2019, “LEMme Tell Ya” will feature a monthly series called “‘LEMme Tell Ya’ Patient Stories in Their Own Words.” The series will highlight Lambert-Eaton myasthenic syndrome (LEMS) patients whom I have come to know and admire. LEMS, as you will see, affects each patient differently.
Ashley Gregory came to my attention during the intravenous immunoglobulin (IVIG) shortage. I knew of her through online patient communities, but I had no idea of her determination and drive. I found out that not only was she going without her IVIG treatment, but she was also working full time as an orthopedic OR nurse at Sentara Leigh Hospital in Norfolk, Virginia.
As I began to check on her and offer moral support during the shortage, I saw one of her work photos. In it, she was wearing a lead apron in preparation for a patient’s X-ray. I was stunned. My description of LEMS prior to diagnosis and when in a flare is that it “feels like wearing a lead apron for X-rays.” And Ashley wears one most days for work!
This is Ashley’s story, in her words.
DD: Tell us about your LEMS diagnosis.
AG: I was officially diagnosed with LEMS in September 2016, a week after my 26th birthday. I began having symptoms after having pneumonia in March 2016. I was admitted to the hospital in April due to the symptoms I was experiencing, which gave my diagnosis a jump-start. I have type-N antibodies and most of my symptoms are autonomic. I consider myself lucky to have [had] such a short wait time for a diagnosis.
Do you have diagnoses other than LEMS?
Yes, I was diagnosed with postural orthostatic tachycardia syndrome/autonomic neuropathy prior to my diagnosis in April 2016. Since my LEMS diagnosis, I have also been found to have Sjögren syndrome, Hashimoto thyroiditis, autoimmune neutropenia, and gastroesophageal reflux disease.
How do you manage to work full time despite multiple diagnoses and an IVIG treatment schedule?
I am extremely passionate about my job and at this point refuse to give up on my career! I feel it is my purpose in life and keeps me driven. I’ve learned my limits and try not to push them too far. My work has been very accommodating to my health needs and I have an awesome group of co-workers who are like family.
Is the IVIG shortage continuing to affect you?
The shortage is not affecting me at this time, although I was unable to receive my treatment for three months this summer. This was an extremely rough time for me because I began having severe symptoms that I haven’t experienced since my diagnosis.
What do you find the most challenging about juggling LEMS and a full-time career?
For me, the hardest part is learning when to take time for myself, and slowing down when my symptoms are exacerbated. I find it extremely important and necessary to take a breather and have a lazy day when I feel I am having a symptomatic day, and have learned when I have to say no.
What do you enjoy doing when you are not at work? What keeps your mind off LEMS and the challenges that come with a rare diagnosis?
I love taking hikes with my two best friends, my Australian shepherds, which keep me going on rough days! I also love decorating my home, working in my garden, restoring antique furniture, reading a book at the beach, visiting craft breweries, and attending concerts. I try to have as “normal” of a life as possible and make time to do the things I love — even if it means having a lazy day the day after.
What advice would you give to someone who is diagnosed at the same age and stage in life as you were?
Don’t allow a chronic disease diagnosis to define or “run” your life. You can still achieve your dreams! Learn to adjust to what your body needs and continue to do the things you love. Without these things, you will lose yourself to your disease. Having a positive mindset has greatly improved my health. Stay positive even when things get rough. Keep a gratitude journal to remind you of the good days.
I have found there are always things to be thankful for. Connecting with others who share my rare diagnosis has also greatly helped me. Also, don’t be afraid to ask your friends or family for help when you need it. They love you and want the best for you!
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.