I started this blog back in 2015 right after my diagnosis with what we thought at the time was RRMS – “normal” old MS that would hit every now and then but leave me generally OK most of the time (in the words of my wizard of a MS specialist, The Great Scott).

I was 48 years old. I had finally found what felt like happiness in my heart after two decades of evolution after the sudden death of my husband when we were both 30 years old. I finally learned how to live my best independent single woman life. I had four cats (I know…that’s a lot, but they gave me utter joy). I had a 150 year old house I loved that was my happy place in a neighborhood with sidewalks and cobblestone streets and neighbors I loved. I enjoyed time alone, time with the close circle of dear friends I’d made throughout my thirties and forties. I loved driving more than most things and took great joy in driving whatever convertible I had in my driveway at the time – a new leased joy machine every three years. I also had a job in advertising, a career really, that I spent a lot of time and passion building because for me, something I was good at that paid me well meant some sort of security I thought a single woman needed. Being a widow at 30 formed me in a way no other event in my life had done. Those years of introspection, debauchery and searching were surreal but in many ways a gift. A gift of time to learn who I was and who I wanted to be. I survived that loss that felt impossible to survive. I was happy.

But weird things were happening to me around the time I turned 45. Unexplainable things were happening to my physical body. I’d been healthy by all “normal” standards for my entire life. I didn’t know that chronic illness was lurking in my meat suit, the body I’d used and abused and inhabited for 45 years. I knew something was wrong but the medical folk around me couldn’t see beyond all of the hundreds of vials of blood that delivered normal lab results over and over again or all of the hormone tests that were also completely normal.

I went down a rabbit hole with my primary care doctor, and a series of specialists, that had me exploring all of the “maybes” including…

-Maybe it was my blood sugar (it wasn’t)

-Maybe it was my hormones (ok, I am a lady of a certain age…but not that either)

-Maybe it was my thyroid (nope)

-Maybe it was rheumatoid arthritis (not this either)

-Maybe it was a back problem (not a back problem)

-Maybe it was lupus, Chrohn’s or IBS. (no, no and no)

Or maybe it wasn’t anything at all and I was just getting old, lazy and tired and that’s just how it happens. I often felt all of those things (old, lazy and tired) so I kept coming back to that one. It came closest to making actual sense. Think about it. What does getting old feel like? I didn’t know. I had never done it before. So I speculated.

Maybe getting old meant that one day, you wake up feeling like shit and you never go back to your old spunky fun-loving self because now you are officially…old. Old people sleep a lot, have lots of aches and pains, complain about every little thing, watch a lot of TV – had strange times where they just fell down or had limbs behave strangely for no apparent reason.That sounded a lot like me. But I didn’t feel old in my mind or in my heart or even in my strangely evolving body, most of the time. I felt young! But not-quite-right.

I didn’t know how to deal with the strange physical phenomena that seemed to be taking over my body so I did what most women probably do. I blamed myself for it. I was messing up my life in some mysterious way I had no control over because according to medical science, I was the picture of health.

Then one day on a hillside in Florence, Italy I found myself unable to walk and I started to think maybe I needed to stop blaming myself and start finding a doctor that could help me. One trip to a neurologist who sent me for a three-hour visit inside of my very first MRI told a crystal clear story. This non-MS specialist called me on December 1, 2015 and said, “I’m so sorry to tell you this, but it looks like you have multiple sclerosis. We’ll need to do a spinal tap to confirm, but your scans tell a pretty clear picture. I’ve scheduled you for three days of IV steroids in the meantime, that should get you back to feeling more like yourself in the short term.” I was to report to the local hospital infusion center (what the hell is that?) to get those steroids (bring something to suck on, they told me, your mouth is going to taste like metal…I’m sorry. What?!). A long-time high school friend I’d recently gotten back in touch with via social media came with me to the infusions. It was strange to say the least.

Also, “We’ll need to do a spinal tap?” That’s a movie I used to love not something I wanted to have done to my actual body.

I have an aunt who had MS but we’d fallen out of touch over the years and from what I knew, she had a pretty hard time. I mean, I knew it wasn’t good. But that was the extent of my experience with any kind of chronic illness.

I desperately started searching the internet for anything I could find that might help me know what to expect from this surreal news. I found a blog called Tripping on Air and for the first time discovered a voice that sounded like mine. A voice who wrote things about MS that were truthful, insightful and scary as hell but also kind of funny. I devoured the writing on that blog – which led me to other blogs which led me to the chronic illness community on Instagram (of all places).

But as I was reading, I was also realizing something a bit concerning. My MS didn’t seem to act like a lot of other people’s MS. I didn’t really have relapses, per se, and this whole remitting thing? That was really not happening. I just seemed to be feeling worse and worse freakishly quickly and it scared the hell out of me.

I’ve been a writer for what seems like my entire life. Journaling had saved my life many times before, particularly when I was a sudden young widow out in the wild world. Writing helped those unbelievable decades of change in my life feel better somehow. Well. If not better exactly, writing helped make what felt unreal at the time feel more concrete. Handwritten words on pages in spiral bound notebooks – stacks and stacks of them. I went back to those books over and over again to read and remember the details of the joys and the pains, learning from myself by reading my own words I’d written from my soul.

I don’t know what inspired me to make my writing public this time but something inside of me needed to be seen. Something inside of me told me this was important even if the only person who benefited from publishing this blog was me. Maybe there were others out there who were being told their MS was atypical, aggressive and unexplainable. Maybe there were people who felt something terrible happening but refused to let the terrible take over. And there were. There are. This community has grown since those early days in ways I never could have imagined back when I published my first post.

This place, this blog, is where I share my story in the hopes of maybe helping someone else, somewhere out there, who might be going through something similar and is also being told that she is perfectly healthy, possibly crazy and just needs to stop obsessing about everything.

Or maybe this is really just for me. Because some days this writing is the only thing that saves me from letting go of the slippery thread that keeps me connected to the world where I’m not just the sick girl. Sometimes the dark comes out more than the bright – but it all helps me. So I don’t filter it, hide it or spare any detail. You’ll find my bright stories, my dark stories and stories colored by every shade of gray in between.

I appreciate every person who takes the time not only to read my words but to comment here or on my social media about their experiences. You keep me going, too. Thanks for that. And for making me laugh and smile a whole lot. Because there is always the bright out there – I just sometimes need help seeing it.

(This should go without saying…but just in case. I am a patient, not a doctor. Nothing on this site should be taken as medical advice. Always talk to your doctor about your drugs and your treatment. Opinions presented are only my own.)