When I checked into my last day of immunoglobulin therapy last week, I sat next to another patient in the waiting area. She looked over at me and said: “I’ve read all of your blog articles. It’s nice to have them, because you really do understand what we go through.”
At that moment, I felt a bit neglectful of my blog, because I have been concentrating on this column since starting it in June. Journalism has a learning curve. Being a columnist means meeting deadlines and getting permission for any photos or patient stories that are shared. Doing this around my energy levels takes coordination and planning. But I’ve always wanted to write professionally, and I’ve been thrilled to take on the challenge.
While talking to this patient, I was reminded that my blog posts resonate with autoimmune patients. Though I don’t post as often, what I have written about as a multiple autoimmune syndrome patient is there for them to find. I made a mental note to start posting more frequently, and I invited her to follow my Facebook page so she could see my “LEMme Tell Ya” columns as well.
It was four years ago this month that my body got so sick that I could no longer be relied on at work. I had pushed through years of pain and exhaustion, utilizing all my earned time and vacation days for sick time. But things became extreme.
People started pulling me aside to ask if I was OK. It became clear that I would have to give up my professional life. My body could not meet the demands of working full time. I still hadn’t been diagnosed with Lambert-Eaton myasthenic syndrome (LEMS).
My plans for my life as an empty-nester were now nonexistent. I wouldn’t be taking exotic vacations. The financial stress of raising three boys as a single mother was now the crushing financial stress of not being able to work. I was at the mercy of my body, my specialists, and the Social Security system.
Then I started writing. I wanted others with invisible illnesses to know they weren’t alone. I wanted people to understand how to support loved ones with autoimmune diseases.
When the Bangor Daily News agreed to publish my blog, I had no idea how it would connect me with my best LEMS friends across the country. What a gift they are! I became a contributor to The Mighty, and thanks to BioNews Services, I have added columnist to my resumé.
Finally, I could utilize my background in public health education, an understanding of the pharmaceutical industry that I learned years ago as a sales representative, and my love of writing. It’s funny how experiences line up for a reason.
The connections I’ve made through my writing have allowed me to assist patients across the country. The networking skills I learned in sales are now utilized in my patient advocacy. I am able to support those whose providers are telling them something can’t be done. My response when I’m told that by a distressed parent or patient is often, “Oh yeah? Hold my beer.”
None of this would be possible without my readers. Nurses tell patients who are fearful of starting treatment about my writing. There is no better feeling than when a patient tells me that my words give them hope.
Let this be my message on Thanksgiving week: I am thankful to all of you, my readers. I recall vividly the moment I submitted my first blog post. I paused to make sure I was ready to share the details of my medical journey. Because I wanted to help others in my situation, I hit publish. And here we are today.
When I had to stop working, I felt that the purpose in my life had been taken away. My children were grown, and my career was over. Little did I realize that I would literally write a new chapter. I’m so thankful to all of you for reading it.
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.
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