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  • AleksaMindOverMyelin

When life gives you lemons…

Updated: Nov 11, 2020

I guess it's time to start making some lemonade! Before I go offering you a refreshing beverage, let me start at the beginning.

One morning in the Summer of 2019, I woke up with numb toes – the kind of feeling you get when you wear shoes that are a bit too tight, or a night of dancing in heels (which you immediately regret once you get home, but not before stopping to get some late-night post-bar food). After a few visits to my chiropractor, the numbness dissipated and I didn’t think too much of it. Flash-forward to Fall 2019, the numb toes came back – cool, great. Which then crept up to my knees. Which then crawled up to my hips. Which then inched up to my waist. So now, after a few weeks of this numbness stalking up half of my body, I spent Thanksgiving Sunday 2019 in the ER. “So, what do you expect out of your visit today?” – THIS, this was how the doctor in the ER greeted me. Yes, I know she was likely missing out on a Thanksgiving turkey dinner and would rather have been almost anywhere else, but I hadn’t exactly imagined sitting in the ER away from my family that day either. After a few questions regarding my symptoms, some quick checks and tests (and realizing I was not sneaking booze in a Tim Hortons cup like the patient next to me – thank you thin curtains for that entertaining banter I overheard), my ER Doctor paged the on-call Neurologist, had a quick chat and I was to have a few MRIs in the following weeks. So, with that I was discharged with no real answers to stop my spiralling theories as my numb lower half went home for the last bit of Thanksgiving.

Shortly after my ER visit, I had my spinal MRI with contrast (an injectable dye, that to me, smelled like melted sharpies). The MRI was pretty easy – you just lay there, listen to some music (the nurse was very sweet and offered a variety of choices) which only barely drowns out the noise of the MRI machine that sounds like you’re in the middle of a huge Swedish Techno Music Festival. My only thoughts during the scan were 1) I wonder if there really is such a thing as a Swedish Techno Music Festival and 2) I wonder if the injectable contrast will turn me into the Hulk.

Flash forward to my appointment with the Neurologist, October 30 2019, to go over the MRI findings which suggested the lesions found in my spine, in addition to my symptoms, were consistent with a demyelinating disease, such as Multiple Sclerosis. By nature, I am a researcher – I love to look into these things, so I already had a preconceived notion of what todays appointment would bring - MS being one of my theories. However, hearing a medical professional say those words out loud SUCKED. So, I held myself together, walked out of the hospital and I almost made it home before I let those hot mess tears run down my face. This was a tough few days; not having any concrete answers or a solid diagnosis, while still experiencing all these weird and worrying symptoms made it difficult to pretend everything was “normal” on the outside. My Grandma’s 100th Birthday party was 3 days after my appointment, and while being surrounded with so much family celebrating my Grandmother was such a blessing, it was tough having all these symptoms and all these unanswered questions while no one knew anything about what was going on. But wine and laughs with my cousins distracted me enough to have a great night – even if it was an early one for me (thanks to fatigue as my ever so consistent symptom).

A few weeks later I had my second MRI – scanning my brain, but thankfully this time without the possible Hulk-inducing contrast. Afterwards, I received a letter notifying me of my appointment with the Neurologist in March of 2020. So, I waited. Then I waited some more. And waited. 5 months later, 8 days away from my appointment, waiting to go over what was happening with me, my symptoms and my very confused and numb body, my appointment was cancelled. Thanks Covid. Moving on to October 2020, the Neurologist requested another MRI (neck and brain), a crap-ton of bloodwork and an eye exam with my appointment to go over my newest results scheduled on, by chance, October 30 2020. Exactly one year from my initial appointment with the Neurologist. Was I nervous? Yes. Did I want to hear from the Neurologist? Yes and no. Of course, getting some answers to what has been happening over the last year would be great! However, I had gotten used to living in this naïve world of not knowing what these symptoms meant, and having a concrete diagnosis would mean facing a new reality.

October 30 2020 arrived and I waited all day, readying myself for the call. “You have four new lesions in your brain, and one new one in your neck – between the correlation of your symptoms and scans, these are consistent with Relapsing Remitting Multiple Sclerosis. So, we’re going to officially transfer you as a patient in our Multiple Sclerosis Clinic.” Dammit - Not what I wanted to hear; but to be honest, it’s what I expected to hear. I’m glad I wrote my questions down and had a notebook ready to write the flurry of information coming at me because the rest of the phone call was a blur. We went through the treatment options and decided upon Ocrevus, an IV infusion I would receive every 6 months. Once we finished up our phone call, I crawled into bed and numbed my thoughts of my new diagnosis with Netflix, only getting out to refill my wine or grab another tissue for my mascara tears. But some time has passed to let it sink in and I’m out of my funk, maybe not quite alright again but I think that’s going to take some time anyway. So right now, I’m prepping for my treatment which includes some more blood work, a TB skin test, organizing insurance and loads of other fun stuff.

So here I am – a new reality I need to adapt to and learn how to live with. I am not the best at sharing this news and what has been happening with me; not because I don’t want to, but because I don’t know how. It’s not something that just comes up in conversation like “Did you see the coffee shop has Earl Grey scones again?” – it’s a weird conversation to start, there’s no natural way to tell people you’ve received a life-altering diagnosis. I figured this would be a great way to facilitate what’s happening with me even though this is WAY out of my comfort zone.

So, life gave me some lemons. Now it’s up to me to do something with them – lemon tarts, lemon meringue pie? We’ll see; this is a life-long auto-immune disease so the recipes will probably change along the way. But for now, time for a glass of lemonade. Cheers to health, cheers to you lovely people and cheers to this little project!

Update: No, one does not turn into the Hulk if injected with dye.

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Nov 11, 2020

You’re one of the strongest & most kind AND POSITIVE people I’ve met xo thank you for helping me with my struggles even while dealing with your own. Something I think about often. Thank you for sharing xo ps you’re such a good writer! ( book deal next )


Nov 11, 2020

Your strength and courage is such an inspiration ❤ I have no doubt you will make the best lemonade there is!! I am here for you any day any time if you ever need help making a batch I am just a phone call away ❤ ♥ 😘 💕


Nov 11, 2020

Such a beautiful post, you made me feel like I was right there with you! Your positivity is infectious. Can we make pink lemonade? 💗💗💗


Nov 11, 2020

Oh cuz... not the news I was hoping to hear. But I’m relieved that you have answers and a path to treatment. I have no doubt that your inner Hulk will shine through. Please know that when you’re feeling deflated and a little less strong, I will be here to “pump you up” (insert Arnold gif). Xoxox


Nov 11, 2020

If I wanted anyone to make lemonade with their “life given lemons” it would be you! Thank you, for sharing. It’s not easy to be vulnerable, but I know I will enjoy the witty banter and information. I am sure I can speak for all when I say that we will all be here for you❤️

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