Once a month on a Saturday morning I head into my local infusion center and receive my Tysabri infusion. Usually it’s not a very exciting three hour stretch. I drink coffee and watch whatever is on the television while I zone out on the iPad or finish up whatever I may be writing as I slowly watch the minutes turn into hours...that is how it usually goes.
Generally I don’t run into fellow MS patients while I’m plugged in and dripping away. Usually I’m the youngest patient in the room by decades and most of the patients are in and out in thirty minutes or so, not in for the full length feature. On this particular Saturday after I was set up and infusing a woman came and sat in a chair near me. I try not to pay attention when the nurses talk to other patients but It was hard to ignore the usual questionnaire that proceeds the Tysabri experience.
I didn’t want to invade her privacy and comment on her dripping bag of Tysabri, but luckily she asked me about the iPad! While we got to talking about technology I brought up the fact that I was receiving Tysabri and she chimed in that she too was receiving the same drug. As it would turn out we would have a lot more in common.
While talking about our MS diagnosis, therapies, doctors and life experiences it turned out that we share the same exact MS teams, from Neurologist to PMNR as well as physical therapists! I think very highly of my MS team and I asked her how she had gone about assembling the same squad? She had taken nearly the same route as I had by advocating for herself and not settling on anything until she was comfortable.
After discussing doctors and meds the conversation turned to daily life while living with MS. While I have found my voice and will happily inform anyone about my condition she is still nervous and struggling with sharing her condition with others. I told her about how I too hid my diagnosis from everyone for months and the immense pressure and stress I had to bear while I gained a foothold in my new life. Once I was out and able to accept that I had MS I grew into a stronger person. Nowadays I know that I will beat MS, no doubt. But in the early days things weren’t so rosy.
My question to all of you is, have you come out about your diagnosis? Was it difficult to share and did you gain or lose anything or anyone? I’m happy to have added another star member to my team and now three hours doesn’t seem so long! Fight on!
Be a Warrior Today,
A Bit About Donn: Donn is 38 years old and was diagnosed with relapsing remitting MS in 2010. He lives with his wife and son in Plymouth, MI.
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