This is my journey with multiple sclerosis, a rare autoimmune disease. From details on my attacks to tests to medication insight, I hope my story helps others.
I was talking to a man who looked identical to Albert Einstein. We were both leaned back in recliners and were shoeless with our socked feet moving as we swapped stories of the most personal kind. This was how my June infusion looked, though my December infusion also appeared the same.
2022 marks my 10-year journey with multiple sclerosis, a rare autoimmune disease. In this time, I’ve learned 10 valuable lessons that I hope can help you too.
“I don’t think I’m strong enough,” I told Andy between tears because between the symptoms and doctor visits and tests, the thought of being diagnosed with a second disease was shattering.
I started my health journey terrified of what the future held. Now, here I am — in the ‘future’ from when I was diagnosed — and I have come to learn that a “no news” type of health-lifestyle is exactly what I want.
To say there is a virus, that decisions are made that do not make the most sense, that the world seems to be crumbling around us, and that life is hard — sure, we are all experiencing this. However, if we pause to focus on the positives, there are also parts of life that are super rewarding, incredibly beautiful and these are the parts I’m holding onto.
I thought about much as the machine breathed beside me and my infusion medication dripped into my arm, and I realized that I’m actually living a better life than I ever have, that I’m lucky, that MS has opened my eyes.
Both halves of my first dose of Ocrevus, my new MS infusion medication, are finished. Here’s more about that . . .
We made my first multiple sclerosis infusion be a celebration of sorts and once it was done, I realized there is power in positivity.
On to a decision, on to Disease-Modifying Treatment Number Three: Ocrevus, an infusion medication.
Maybe this is the news I needed to shake me out of my own safety net. Maybe I needed to hear this to stop holding myself back. Maybe — in some warped way — MS will free me.
Exciting news to share: I wrote a piece about multiple sclerosis that was recently published online!
Life is fleeting and unexpected and turbulent at times so while it is calm, while it is good, let’s celebrate.
Mirrors show what we will call our imperfections, our flaws. Mirrors allow us a way to look — face-forward — at the truth, to examine ourselves, to witness ourselves change. So my mirror — Is that the truth? Or is that showing the truth of what I fear? Or is there even a difference?
Lots of multiple sclerosis updates here including how I like my new neurologist, steroid treatments, my amusing and highly drugged MRI visit, and which medication I decided . . .