I mean, chances are if your mama has/had MS, she wasn’t blogging, but that might be me projecting my own age onto everyone else who isn’t me. BTW, that is me and my mom before she got sick and before I realized I wasn’t immortal either.
But the sentiment is there. You can type “personal experience MS something something something” into your search engine of choice and come back with a billion hits. It’s cool if you nod your head and move along. It won’t hurt my feels.
I have had the idea for this percolating in my brain for a few months while now. I haven’t been writing for ModifiedMotherhood, mostly because my kids’ mothering needs have shrunk considerably over the last couple of years (you know, like they do). Yes, I still have one child who isn’t 18 yet. No, I don’t need to write about “Good Snack Foods For Your Adult Child” – if they aren’t getting their own snacks by then… I have nothing more to impart. My five year olds could get their own snacks and I made sure to keep good snacks where they could reach. I’ve stepped sideways, moving from Modified Motherhood to MS Modified. I will be a mom for the rest of my life, but the rest of my life won’t revolve around tiny toes(es) and runny noses.
New Blog, Who Dis?
What does it revolve around? Sadly, chronic illnesses. I guess in some way it always has. My entire immediate family, from my siblings back to my grandparents, had one thing or another. Cerebral Palsey. Colon Cancer. Multiple Sclerosis. Stomach Cancer. Old Age. Other Cancer. Dementia. Alzheimers. Breast Cancer. Fibromyalgia. Ehlers-Danlos Syndrome. POTS. MCAS. Autism. ADHD. It’s ridiculous.
So I am going to jump into my very own Way Back Machine and start at the beginning. Luckily I write everything down. Expect new posts with a date at the top that does not quite match the publishing date for quite some time to come. We’re going on a trip through the early stages of my symptoms, misdiagnosis after misdiagnosis, trying all the drugs, one doctor putting me on one drug and another doctor telling me the first doctor is an idiot. I mean, it was a hoot! (It was decidedly NOT a hoot.)
I don’t know more than the next person in line. I am not claiming to be an expert of any kind. I just know what I went though, and maybe that will help the person in line behind me. MS Focus has all the MS info available (I am partial to them because their offices are local to me, but pick your preferred MS group if that isn’t it). I have anecdotes and personal experience. Somewhere in the middle might be the information you need. I’ve spent what feels like most of my life advocating for people who couldn’t advocate for themselves. It’s been a wild ride learning how to advocate for myself.
I am still a mostly natural, slightly modified aging punk. I still can’t focus on one thing for too long. I plan for this to revolve mostly around Multiple Sclerosis. Still a wide topic, still lots of wiggle room. MS effects, simultaneously, everything and nothing in my life. It is Schrödinger’s MS.
You can reach me at IAmMSModified@gmail.com (guess what email was already taken…)
When Punk meets… Chronic Illness! We got this.