OK. I admit it. I have lived my entire adult life as an “anti-clinic-er.”
“What?” you’re thinking to yourself. “You mean to tell me that I’m following the blog of a woman at MDA’s National Clinical Conference who doesn’t go to clinic???” Yes … it’s completely true. But WAIT — let me explain myself before you click to the page of a more reputable and trustworthy blogger.
I had what I considered to be the world’s GREATEST pediatric neurologist, who I did not want to give up when the time came. So I did what I always do when faced with a problem — I solved it. My solution was to utilize my primary care physician (and later my gynecologist) for all of my needs. After all, I was very healthy, facing a cold maybe once a year, twice at the most. And if he could write a prescription for an antibiotic, then he most certainly could write one for a wheelchair and a patient lift — how hard could it be? I mean that’s all that happens at a clinic experience, right?
I did go to a couple of clinic visits as a teen, and in my teenage mind, this is how I interpreted the process:
So given that interpretation, I took it upon myself at 18, to NEVER GO AGAIN.
In reality, I think that I’m pretty similar to a lot of fearful, yet strong-willed people with neuromuscular diseases across the country. It’s very easy to fall into a comfortable routine of avoidance or to create an alternative reality of health care. But the fact of the matter is, it is not the best road to travel down. In fact, I have found myself surrounded by experts at this conference (two of whom I will mention momentarily) and realizing the many mistakes I have made over the last 15 years by not regularly attending clinic. Please do not follow my tracks down this bumpy road. Allow the MDA clinic to pave the way down the road to a healthy, successful life.
I’m going to conclude my blogging by sending a special message to two doctors who have touched my heart …
Dr. Ericka Simpson, I look forward to visiting Houston’s MDA Clinic in the VERY near future. I can’t wait to start our annual visits and for you to be my doctor who knows and understands me and my disease process. You are a beautiful person, inside and out. I feel that we share a similar passion to promote women’s health and I will happily work with you to bring this issue to the forefront of people’s minds. Thank you for reaching out to me with your compassionate hand.
Dr. Thomas Crawford, I wrote earlier in this blog that I thought I had the best pediatric neurologist in the world. And while he will always hold that place in my heart, it has been made evident to me over the last 24 hours that YOU hold that title in the SMA world. THANK YOU for allowing me to monopolize all of your time with my million questions. You are the first person to explain my disease and the subsequent effects of its process in a way that makes sense. You are a delightful person and a doctor that I will never forget.
Thank you readers, doctors, clinicians, clinic staffers, MDA, Ashley Thomas (my travel buddy and bestie), the South Point Hotel, and everyone else involved in this three-day event that has blessed my life and made me a better-informed and prouder patient served by the Muscular Dystrophy Association.