When things don't go your way ~
shaking my fortune-telling 8 ball for the answer I want~
Damn. Sometimes this happens, right? We don't get our way. But for whatever reason, I never ever think it's going to be a part of my story. Which is funny, because historically it has ALWAYS been a part of my story. I love my trusty optimism. Always off the mark, but consistently by my side. Talk about blind loyalty.
I went two days ago for my MRI with contrast. Brain only. What this means is that the techs first set me up with a regular MRI where I go into the loud banging doughnut hole looking machine, laying as still as possible, with my face in a close fitting helmet of sorts. I have earplugs in and noise eliminating earphones over them to quiet down the sound. For a contrast exam, they first put in an IV port and then after the first part of my exam, they roll me back out, plug in the feed for some saline/dye mix, and then quickly roll me back in and start the machine back up. I am not to move.
I've done this five or six times in the past 18mo. Typically, I stay pretty still, but the other day my neck itched at the beginning and I inadvertently jerked my head. I had to re-do the first part of the exam. All in all, exam took a little over an hour, which is honestly not too bad.
I was surprised they didn't order a spine exam as well. But apparently, adding the spine to the mix requires an entire additional study. No idea what that really means, but it's what my neurologist told me when I spoke with him a few hours after the scan.
Yeah, he called me after the scan. Twice. The first time was within the hour, but I didn't recognize the number and I was visiting with an old friend from out of town, so I let voicemail pick it up. No voicemail left, so I figured it was just a sales call.
I received the second call as I was waiting for my daughter to get off her PCC charter bus. She texted me from her school that she realized she'd forgotten her house keys at home. Luckily, we had made an extra copy for me to keep (just in case this exact kind of thing happened). So, I drove across town and was waiting for her out in the car when the phone rang.
Basically, it was bad news. My brain has been busy adding new lesions. He said I have, "Three pretty good sized ones" since my last MRI, 6mo ago. Damn.
I don't know why I thought I'd be getting good news from him. I haven't been the poster child for an Anti-Inflammatory Diet like I had intended to be. Truth be told, I've been pretty crummy at it. To my defense, I've had a pretty tough year. I got this chronic illness (RRMS), I had a partial hysterectomy, my mom passed away, my daughter moved out with her boyfriend (and our cat) to start college, and another family member and a friend passed away. All within 14months. Yeah, 2017-2018 was one of the hardest years to date.
So, I wasn't spot on with the diet as hoped, but it might've been too tall an order for such a complicated year. One thing I did learn though, is that I don't want to live on a highly restrictive diet forever. Thing is, I do eat very healthy. I make warm nutritious meals for me and my guys most days. I like homemade pumpkin pie and other sweets, but I don't indulge too often. I try not to eat gluten, but this one is easy since it upsets my stomach. I like to eat a little dairy here and there, but I prefer almond milk over cow's. I eat fruit and vegetables, whole grains, and I try to walk twice a day.
But I have a progressive condition. So, while I've been trying to slow my pace down, (painting rocks, meditating, going on walks, cooking, reading...) it seems my RRMS has been doing it's thing. I was so stunned when my doc told me all this. I just sat there, in the car, and tried hard to remember exactly what he was saying. Which is impossible. Honestly, after a few minutes my mind was on it's own loop...and all it was saying was, "Damn kitten, things are getting real."
F*ck.
The one thing I do remember him clearly asking was, "Have YOU noticed anything?" Like what, doc? More confusion? Poorer memory? Increased janky body movements?
No, I haven't. But I asked my guy, just to be sure, and he hasn't noticed any of those symptoms either. What he has noticed, though, is my increased sleeping. I have been chalking it up to my walking, the weather changing, possible peri-menopausal hormonal thing? But maybe I've been so extra tired because it takes energy when parts of my brain atrophy. Gosh, writing this down (and knowing it's real) feels harder than expected.
I got home and cried. I fell into my guy and admitted that I'm scared as f*ck. When does this slow down? Does this mean I have to succumb to the pharma meds that are so insanely over priced? I think about the financial hardship MS drugs put on families and it makes me angry and sad. How could a company intentionally over-charge for medications that patients need? Then I breathe deep and try to remember that my stress won't change a thing. It's going to take action, and just now, I don't have the energy for that undertaking.
So, I did what I should've done a while ago. I told my daughter that I was ready to get a kitten. She asked if she could come with. We spent maybe a few hours there, looking around, spotting the one I wanted, and then filling out and completing the paperwork. I ended up taking home a tiny little lady we've called Lulu (Lu for short). She weighs 1lb 14oz. Holy smokes, she's the sweetest. She kept sneezing in my face as we slept last night, but I could care less. We all love her already. Funny how that works.
Sometimes I have to remember that things just happen randomly. I have this faulty thinking that has me believe that if I'm a 'good' person, things will simply improve. But that's obviously not the case. I have an auto-immune disease that's on the rise, incurable, and expensive to keep at bay. Lame. There's the fighter in me that wants to dig my heels in deeper and say, "No Way! I will NEVER use big pharma meds!" But then I consider my two kids, my guy, my family, and now little Lu. I want to stay active and pain free as long as possible. I will ask my pride to take a back seat, and try to hear out my neurologist next week. Maybe it is time for me to accept that taking these drugs is the best I can do just now. If I find more energy in the future, perhaps I can look into helping change our medical system. For now, I'll go on my walks, spend time with my family and close friends, and give little Lu all the love I can. And allow her love to wash over me and lessen some of my fear.
