A Couple of Things I Dread

A Couple of Things I Dread

I’m blogging on my phone from bed again because I’m feeling kind of low today. I’m not apologizing for it, but I am offering something of a warning. In case any of you are feeling less than content too and need to postpone reading more not-happy stuff.

First, I feel mostly sad and anxious today. As is usual with these kinds of things, I can’t clearly articulate why. Maybe the margarita I had last night to celebrate our five year anniversary has depressed me? One drink has never made me feel this way before, but I am still in the habit of internalizing the thousands upon thousands of messages I’ve received since I became chronically ill–messages that tell me everything bad that happens is the result of some choice I made. I had bread instead of Brussels sprouts last week. No wonder I hurt everywhere. I colored a drawing instead of riding the FitDesk for 30 minutes. Of course I can’t move my joints. I drank a margarita instead of water with dinner. Of course the whole world is closing in on me.

Or maybe I’m just having a harder time than usual pushing the stressful stuff out of my mind because sometimes that happens to people.

I do know I’m worried about the book. It’s the same kind of mental yuck I’d get as a kid the night before I had to give an oral presentation at school. Only the big difference is I’m not being made to write this memoir. I’ve chosen to do it.

It just feels so huge an undertaking, and I’m not sure I’ve got what it takes. (Not, like, do I have the talent, but am I able?) ‘Cause if I don’t pull it off, there will be even bigger financial worries in my future. And, hello, Universe? I don’t know if you noticed, but I already have a brain tumor. I don’t really need any more personal struggles. I’m good. I have built soooo much character in my 38 years.

But I feel the self-imposed burden to finish what I started, when it would be so much healthier for me if I could say to myself, “It doesn’t matter if you finish this,” and then really mean it.

Also? I have an earache, which has more to do with me being in bed than run-of-the-mill depression. I could pout for days. And winter hasn’t even started.

Tips for a Brain MRI

Tips for a Brain MRI

This content is available in video form on my YouTube channel. Check it out! Here are some tips for a brain MRI from a seasoned pro.

I consider myself something of a professional when it comes to having MRIs. In fact, my brain tumor has been scanned so many times, I have genuinely lost count of the number of MRIs I’ve undergone since 2017. If you’re nervous about having one because you’re not sure what to expect, that’s understandable. But I think I can help put at least some of you out there at ease, so I’m going to try. The advice I’m about to give is particularly helpful for those of you going in head-first for brain and spine scans.

If you’re claustrophobic? Ask for an anti-anxiety pill.

If you think you’re not claustrophobic? Still ask for an anti anxiety pill.

I didn’t think I was claustrophobic when my doctor screened me before my first scan, but it turns out that I had just never been in such tight quarters before. When the MRI tech slid me in, I freaked out a little. He moved the table back out and let me compose myself. But in hindsight, the whole thing would have probably been much easier with a Xanax.

I don’t need Xanax now, but that’s because MRIs are as common as sneezing for me now. (If you’re lucky, YOU TOO can become desensitized to having MRIs. Kidding. Of course.)

Close your eyes.

…before the table you’re lying on starts moving you inside the tube, and don’t open them again until you’re all the way out. It’s easier to not freak out if you’re not looking at the thing that freaks you out.

Ask for a Washcloth.

If the tech doesn’t bring it up herself, ask her to put a washcloth over your eyes. My scans last from 45 minutes to an hour depending, and that’s a long time to squint your eyes closed, particulalry if you’re stressed. With the washcloth over your eyes it won’t matter if your eyelids involuntarily pop open. And the previous tip I is automatically taken care of.

Be prepared for some really loud honking and buzzing noises.

You will be given earplugs and/or noise cancelling headphones, but they only protect your ears. They don’t completely eliminate the noise. When I get my MRIs, they offer to play music in the headphones if I want. I always say yes, and I always pick something with a nice beat like ’80s pop or classic rock.

Consider learning to meditate.

If you already meditate/practice mindfulness, you are at a GREAT advantage for staying mellow during the scan. If you don’t meditate, maybe give it a try. I have found it so helpful because meditation is essentially just training your brain to focus on things that are helpful while ignoring the stuff that’s potentially stressful.

Contrast will make you feel like you wet your pants, even though you haven’t.

If you’re getting an MRI with contrast: expect some weird but harmless sensations. The IV contrast feels cold in my arm when it goes in, and then I get a warm sensation that makes me feel like I’ve wet my pants a few seconds later. It goes away pretty quickly. But I can see how those things might be a little disconcerting if you’re not anticipating it.

Relax! You get a panic button.

Yes, they’ll give you a panic button! They put a little rubber ball in your hand that you can squeeze if you need to get out for any reason. If you can’t handle it in there, squeeze the ball, the tech will be alerted, and then the tech will always slide you on out. You are never actually trapped in there. Don’t let the freak-out part of your brain tell you otherwise.

Warm blankets are available. You might or might now want them.

You’ll probably be offered warm blankets. I never take them, because I’m almost always hot, and I find that feeling cool air swirl around inside the MRI and inhaling it deeply is pretty calming. However, if you’re always cold and think you might be shiver-y, take the blankets. Moving during the scan can blur the pictures and make it necessary to start that one over. Nobody wants that.

BONUS TIP: If you haven’t already, check your hospital’s website for information on what to expect and any special instructions. The more you know, the less there is to potentially be scared about.

VIDEO: Life with a Brain Tumor: Emily Gets an MRI

VIDEO: Life with a Brain Tumor: Emily Gets an MRI

It’s snowing in Urbana today.  Nothing too serious, but just enough to be ridiculous.

Earlier this week, I had a check up with the fine folks at Siteman Cancer Center. I made this little video about the experience. If you’re not a subscriber to my YouTube channel yet, please subscribe!

[youtube https://www.youtube.com/watch?v=Uabz0J9ws-U]

Emily’s Cancer Calendar: October

Emily’s Cancer Calendar: October

Another month in the books. My FitDesk numbers were waaaaay down in October, but that’s okay. It’s because I’m trying new things, including keeping up with household chores more frequently, making videos for my YouTube channel, and volunteering to Get Out the Vote on November 6.

By the way, if you haven’t yet, please check out my channel and subscribe. I’m working really hard to get 100 subscribers so I can claim a vanity URL.  (Something easy to remember like youtube.com/emilysuess instead of the current https://www.youtube.com/channel/UCkpRtMiYXyG8YZjrtgjfKSQ.

Anyway, here’s one of my recent videos on how you can make your own handwriting font for free:

I also draw, doodle, and color on-camera. It’s relaxing for me, and hopefully for everyone who watches. I’m working on some additional content ideas for the channel that include my vlogging a little bit about life with a brain tumor. Subscribe if you want to be notified when I post new videos.

Let’s see…what else? For the past couple of weeks I’ve been trying out what I like to call Kitchen Zero. Think of it kind of like Inbox Zero. Only instead of no emails to read or reply to, at least once a day (usually after dinner or just before bed)  there are no dirty dishes in the kitchen. I realize that for some people this is a natural occurrence. In our house, it is not. It has to be forced. And I’ve been feeling well enough to keep it up almost every night.

Also, you’ll see there on the 19th that I got my very first professional haircut since I underwent The Great Buzzcut in early 2017. Honestly, my hair still isn’t that long (I buzzed it last in early June) so my look isn’t much different. But it felt amazing to me to finally have that shaggy junk stop tickling my ears and the back of my neck.

Unfortunately, after spending about 40 minutes in the hairdresser’s chair, I ended up hurting from head to toe. Those of you who have fibro or other chronic pain will understand what I mean when I say being touched for an hour sent me into a couple of flair days. My nerves just cannot handle being activated.

I don’t think that will ever change for me. Kind of a downer to think about it that way, but I can deal. I am dealing. I just try to give myself rest time throughout the day and puff my MMJ vape until the sharp edges get a little rounder.

That’s it for October. November includes my next regularly scheduled check-up MRI. So I’ll keep you posted.

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