Well, it certainly has been a while.

On the bright side, it’s been almost a month now that I have been off prednisone – YAY!

And I mean that in the most absolute and utterly incredulously, most amazing way humanly possible. The crisis of insanity is OVER! My mind is my own again! The evil, nasty, unbalanced, psychotic and ridiculously insane kettle of satanic fish has finally left the building!

*insert embarrassing football victory dance*

Unfortunately I am still off work. It’s been 6 of the most challenging months of my life…. when one hurdle gets dealt with, 2 twice as high seem to sprout up in its place… much like Alice in Wonderland, it’s an uphill struggle.

My rheumatologist and internist are constantly telling me that autoimmune diseases come in ‘packs’ – like once one crops up, it starts a domino effect in your body that triggers other diseases because the first decides to have a VIP access party, and only time tells who the surprise guests are…

In my case, the second was fibromyalgia, and the third has yet to be formally diagnosed, however strong suspicions of all 3 of my medical team leave me with waiting for tests and referrals to specialists that evaluate for multiple sclerosis.

It shouldn’t be a huge surprise to me -my mom was just a few years older than me when her MS reared it’s ugly head. It’s been a different presentation of symptoms than with her, however it’s been anything but a joy ride.

2 months ago I was sitting at home, sipping hot chai tea and snuggling down into an overly fluffed pillow, sporting my pink polka fleece pajamas and bright green slippers, when the most intense and mind-searing pain I have ever felt in my life assaulted one side of my face. I am not talking about the ‘okay ma’am, on a scale of 1-10 please describe your pain level’ pain, I am talking about the ‘oh my good lord, if this doesn’t stop I am going to put my head under toilet water until I stop breathing just to make the pain stop’ kind of pain. I literally went from fine (albeit tacky and eccentric) to laying down, one side of my head cradled by my hands, sobbing silently with tears streaming uncontrollably down my face in about 1.5 minutes.

Apparently this is called Trigeminal Neuralgia. My poor mother shoveled any and all kinds of pain medication in my arsenal at me just to stop the pain. I couldn’t speak because it hurt. I couldn’t stop sobbing. I couldn’t even cry properly because the pain was so overwhelming even that small gesture was too much to hope for…. it was hands down, the most excruciating, mind-numbing, surreally intensive pain I have ever experienced in my life. Apparently Trigeminal Neuralgia is also known as ‘The Suicide Disease’ because it has the highest rated of suicide of any other illness. People end their lives just to stop the pain…

Yeah. I get that.

Fortunately my doctor is an amazing human being who caught it fast and immediately put me on medication that stops the episodes… unfortunately he also informed me through furrowed brows that it commonly is part of the early presentation of MS, and he wants to request the testing be moved up in priority and urgency…

..so that’s not fun…

On the bright side, in terms of neurological and/or autoimmune diseases, MS isn’t so bad. Don’t get me wrong, it is absolutely no birds-chirping, Mary Poppin’s, love-life-and-snow-cones kind of cake walk, however in the terms of ‘best of the worst’, MS is not always the end-all-be-all, and you can possibly live and love a functional, pseudo-normal life.

To top everything off- literally as I was leaving an ophthalmologist appointment in the city, a young gentlemen was enthusiastically texting his girlfriend while going 30km’s over the speed limit when he rear ended my vehicle that was almost at a complete stop. My doctor tells me something called Post Concussion Syndrome can last up to a year, and is the culprit behind my constant headache, nausea, and dizzy spells that are naggingly now part of my every day life.

*head smack*

So yeah… there’s that.

Again – in terms of the best of the worst, I am extraordinarily fortunate that my car can be fixed, parts can be replaced, and other than Post Concussion Syndrome and a lot of bruising, I can happily walk away – and so many are not as fortunate. ¬†Not quite skip through the flower filled meadows yet, but in due time…

So, onward to another day.

Lyrics I think are beautiful, and a prayer I have mentioned before…

“Come on skinny love,

Just last the year…

Who will love you?

Who will fight?

And who will fall… far behind”

God grant me the serenity to accept what I cannot change, the courage to change the things I can, and the wisdom to know the difference….



About emmbeezee

Who I am and what I am about. I'm a technologically challenged, small town girl of 29 with a rare autoimmune disease called Dermatomyositis. I am married to my best friend and soul mate, second and last marriage for the both of us. With that comes one full time teenage step-son, one half-time younger step-son, a mildly unbalanced cat, and my slightly neurotic, lovable Mom. I have weird hair, tattoos, and passions for roller derby, crocheting, and reading. This a glimpse through a keyhole into my world.
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