There are people out there that have problems. They have diagnoses, mental health issues, and their own struggles. Some people talk about them and some people don’t. I talk about them. I believe that knowledge is power. I believe that ignorance is bliss, your bliss, not mine. I believe that if you don’t know what I (and over 2 million people worldwide) are going through, that you might inadvertently say hurtful things to us like, “but you don’t look sick” or “but you were fine yesterday”, or the dreaded… “I hope you get/feel better soon.” 😬
Unfortunately MS doesn’t have a cure. It is a progressive disease. There are 3 stages of the progression, I have the stage called Relapsing-Remitting MS. I get a ton of questions asking me about my infusion so I thought I would explain, or at least as much as I can, what my infusion is and what it does.
Ninja, my neurologist and I made an aggressive treatment plan to get an infusion twice a year. My infusion is called Rituximab. The way it works is, B-cells are the immune cells responsible for making antibodies and for activating inflammatory T-cells. In MS, these cells are believed to be a main driver of the inflammation that contributes to nervous system damage. Rituximab is a monoclonal antibody that targets a protein on the surface of B-cells, called CD20. By targeting CD20, rituximab can kill these inflammatory cells, ultimately reducing MS-driving inflammation. Or at least that is the hope. The drug affects everyone differently. It also lowers my immune system to virtually nothing, as we are effectively killing off my immune cells, hence the mask in public places.
So how does it make me feel?
I’m not really sure yet. Every time I’ve had it, there have been different variables. I was diagnosed in January 2022 and I had my first infusion 2 months later, in April. I am very fortunate that I was diagnosed quickly and that we came up with a treatment plan that started soon after. My first dose was separated into 2 doses, I was given half and then 2 weeks later I had the other half. This was to let my body get used to it and make sure there were no complications or extreme side effects. I’m unsure as to exactly how much it has helped because I started treatment right after my first big flareup that lasted 8 weeks. During that flare up we found 6 good sized lesions on my brain. I don’t know what it feels like besides being in a massive flare up or on the Rituximab, so, really I only know pre-MS, Flare-MS, and Rituximab-MS. I do know that the first few days after the infusion are pretty awful.
So what does it do?
My medicine is hopefully there to stop NEW flareups like the one I had in January 2022 and prevent new lesions from forming. I received my second treatment in October. This is what we are going to call my base line. The drug has been in my system twice and now it should really begin to work. I noticed the fatigue was really bad towards the end of August and throughout September. My daily symptoms were more pronounced towards the end of the 6 months too. I don’t have all my symptoms every day except the fatigue. I always have fatigue and numbness on my left arm/hand. The other symptoms fluctuate with the amount of sleep I get, the stress I feel, if I have my period or allergies, the weather, and honestly just about anything and everything can set off a pseudo flare (when it feels like I’m in a flare up but no new symptoms present themselves). Back in the autumn, I wasn’t sure if it was the medicine wearing off or just the end of a long hot summer. The summer had it’s own challenges, the heat being one of them. I have found the heat makes me very tired although now that I’ve been through winter, I realize hot and tired beats the pain I feel when I’m cold!
I have found out that the period that is at the end of 1 treatment and before the next, is called the “crap gap”. I think the issue is funding as each infusion is over $30,000 and I’m so grateful that I don’t have to pay a penny, so I find it hard to complain even though I sometimes wish we could do 3 treatments a year. To be honest I’m not even sure that would be healthy or not?? I really felt the drain over February and March this year. Waking up daily with multiple symptoms and being unable to function normally on many of those days. So, I guess that’s what the infusion does for me. It will hopefully continue to stop new lesions from forming. My latest MRI showed no progression and no new spots! It also helps me to maintain the most energy that I can in light of the progression of this disease. Apparently a lot of people on my MS chat group say that you really start to feel less fatigued by year 3-5.
Check out How Was Your Week, Honey? Episode #325: I Know What You Want HERE! This week, it’s my 44th birthday! Topics: refs, online, Oiler’s vodka, 44 Things, punk reunions, & Spotify DJ.
Strawberry Chicken Meatball Rice Bowls
Adapted from The Café Sucre Farine
1 lb ground chicken
3 green onions, finely chopped
½ bell pepper, finely chopped
3 tablespoons cilantro, finely chopped (chop a bit for garnish too)
½ cup panko crumbs
1 large egg
2 teaspoons sesame oil, divided
salt & pepper
¼ cup water
2 teaspoons cornstarch
½ cup strawberry jam
¼ cup balsamic vinegar (I use red wine vinegar)
2 tablespoon soy sauce
½-2 teaspoons chili garlic sauce
1 cucumber, thinly sliced
8-10 strawberries halved, then each half cut into thirds
1/2 a red onion, halved and thinly sliced
2 tablespoon fresh lime juice
2 tablespoon honey
1 tablespoon rice vinegar
2 cups RICE, cooked
1 teaspoon sesame seeds
Preheat the oven to 475˚F with a rack positioned near the top of the oven. Line a sheet pan with silpat mat.
Combine the ground chicken, panko, green onions, bell pepper, cilantro, 1 tablespoon ginger, garlic, egg, sesame oil and season with salt in a large bowl. Mix until combined.
Scoop up the mixture into 1 ½ inch balls and arrange them on the baking sheets, spaced about 2 inches apart. If you have time, refrigerate the meatballs for 30 minutes. You could also freeze the meatballs at this point.
Spray the meatballs with oil and bake for 10 minutes. (If meatballs are frozen, give them an extra 2-3 minutes.)
While the meatballs are baking, combine water and cornstarch in a medium saucepan and stir until well combined and there are no lumps. Add strawberry jam, vinegar, soy sauce, 2 teaspoons ginger, and chili garlic sauce. Bring to a boil and then simmer for 3-4 minutes until the sauce begins to thicken. Remove from heat and set aside.
After 10 minutes in oven, remove meatballs and dip each meatball into the sauce then return to the baking pan. Bake for another 2-3 minutes until meatballs are nicely glazed.
To make the dressing, combine the lime juice, honey, rice vinegar, 1 teaspoon sesame oil, 1/4 teaspoon chili garlic sauce and season with salt in a jar with a tight-fitting lid. Shake well. Set aside.
Combine the cucumbers, red onion and strawberries in a medium-size bowl. Drizzle the dressing over the top and toss gently to coat. Set aside.
Divide rice between 4 bowls. Add 3-5 meatballs to one side of each bowl. Spoon some of the sauce over the meatballs and sprinkle with sesame seeds and chopped cilantro. Add the salad. Drizzle any extra dressing over the salad.
This week kind of flew by! SBean is in her spring fashion era, Ninja surprised the Kids by picking them up at their activities and driving to Kelowna for dinner and to buy a new… PS5! He saved up all of his credit card reward points over the past few years and finally got one! I read some fantastic books that I can’t wait to share with you soon, Oliver was happy when I finally got out of bed, and I actually felt his steaming pile of hot poop with my left hand when I took him for a walk this weekend! It’s the small things 😂 we cracked open the collectors edition Edmonton Oilers vodka that I got my Sis to get for Ninja from Eau Claire Distillery when they were in Alberta over spring break, ordered delicious takeout from Flambé, and HBear came in second place at her hip hop dance competition this weekend! Oliver passed his intermediate dog classes, it was a moody rainy weekend that ended with sunshine and tree buds everywhere, and Ninja made me my favourite Chicken Parmesan to end my birthday week. I ended the week with a big grocery shop and an even bigger nap. Like I said, baby steps but always forward 😊.
