Skipping Baggage Claim

Skipping Baggage Claim

Barring anything unforeseen, today I had my last appointment with my oncologist here in Urbana. And maybe I’m about to go skipping baggage claim.

My emotions are mixed. The move is an exciting thing I’m looking forward to. But if you’ve been reading my blog, you know that I have some medical baggage, and that makes leaving good doctors in search of new ones kind of a scary thing.

I guess I can relate it to high school graduation. The possibility of my future is cool, the uncertainty is not.

My doctor gave me some recommendations last week, and today I learned that she personally knows her top recommendation because she used to work there. I think I felt my muscles relax a little hearing that. I’m still going to miss her, but the future seems a little less scary.

In the past I went to Siteman Cancer Center at Barnes-Jewish in St. Louis, but getting there is cumbersome, I was never seen on time, one of my doctors there wouldn’t tell Lincoln Financial Group I was disabled unless I gave him $500, and I’m healthily skeptical of medicine in Missouri these days. (They’re like one legislative bill away from declaring chemo illegal because it makes people infertile. I’m exaggerating, probably, but a whole lot less than I’d like to be.)

So, to summarize, I think this is going to work out better for me. And I really love to be able to say that. Because that has not historically been the case for me when it comes to medical stuff. It feels like skipping baggage claim, because all I have finally fits in my carry-on bag now.

Vesitbular Neuritis and Stuff

Vesitbular Neuritis and Stuff

I am having a day. Actually, a couple of days. I’ve been wanting to say I feel like my nerves are inflamed for a while now, but it sounded a little ridiculous to me. So I finally Googled whether or not nerves can be inflamed, and I’ll be damned if I didn’t just self-diagnose vestibular neuritis.

I can’t even express how much easier and more productive my doctor visits are about to become. Words are EVERYTHING, and at some point “brain cancer” and “ouch” are just too freaking vague to be helpful.

Of course, I’m always a little hesitant to be bringing things up to doctors after an online search, but then I keep reminding myself that my brain tumor diagnosis came only after I asked for MS to be ruled out.

Also, the crappy doctors with egos the size of Asia? They haven’t been in the picture for a while now. I can calm down about being ignored, but I do have to remind myself. My default setting is still panic about being charged hundreds of dollars for a professional gaslighting.

So, I would label my current experience a flare of vestibular neuritis. I’m dizzier than usually, hurtier (it’s a word now) than usual, and I feel so internally swollen I want to split open my skin and see if that brings any relief. I mean, I will refrain from slicing myself open, but just so you get the idea here.

Weather-related pain, migraine, oversensitivity to sound, light, and touch. I have it all folks. And as horrible as I feel, I am so grateful to see it as a whole, name-able thing.

Oh, coincidentally, I bought some of those Loop earplugs. I’m a fan. I got the Quiet version so I can still hear most things but I don’t wince at the pain of Dan’s normal speaking voice or feel assaulted by Boomer’s bark when a delivery person pulls up.

Despite not feeling like doing anything today, I did manage to get our move scheduled for next month with Two Men and a Truck. Our house is being listed privately until we move and it will be easier to get interior pictures for the full listing. Stuff is happening, and while I feel pressure, I don’t feel overwhelmed.

I probably exacerbated the conditions for a flare by pushing through four days of CZT training. But I am so glad I did it. Opportunity isn’t guaranteed to anyone, but when it presents itself, us unhealthy poors will move proverbial mountains to take advantage. Even if there’s only a miniscule chance we’ll make it through.

In the interests of recovery, I won’t be overdoing anything for a while, but I’m excited to even want to do stuff. Hope is a helluva drug.

More storms are in the forecast, so I know I need to be mindful of my screentime. Plus I want to save a little screen time for Letitia James appreciation Twitter. More later. Happy Wednesday, all.

CZT Training Day 4

CZT Training Day 4

I’m a CZT (certified Zentangle teacher) now after completing CZT training day 4!

The past four days were harder than four years of writing papers in college in terms of perceived effort. I’m not complaining—just the opposite. I’m pretty damn proud of myself.

Saturday (Day 3) was the hardest day. The second full day of webinar-ing, and I worked on a lot of tiles. Toward the end of the day, my dominant hand went pins and needles on me. My lines got really wonky, and I started getting super cranky with myself—the truest sign of my fatigue is how grumpy I am.

That’s why yesterday’s blog post was so short. In fact, I’m not even close to recovered from the fatigue and exhaustion, so I should probably cut this short too. Here are the Zentangle tiles from today’s training:

I will definitely have to write about my other thoughts later about the online training courses later. For now I’m delighted to have made it through CZT training day 4.

You might also like:

How to Draw Zentangles: One Zentangle a Day

Are you a Certified Zentangle Teacher? Let’s connect!

CZT Training Day 3

CZT Training Day 3

Much tired. So weather. Words hurting. CZT training day 3.

I do not plan to write much for today’s blog post, because I need to save some energy to make it through tomorrow’s seminar. It’s the fourth and final day of training.

It’s so rewarding but also so difficult for someone with brain cancer and extremely high chemo-enhanced fatigue.

You might also like: Certified Zentangle Teacher

If you are interested in becoming a Certified Zentangle Teacher, checkout how at Zentangle HQ.

CZT Training Day 2

CZT Training Day 2

Today was a full day of CZT training. (Yesterday was just a half day.) I started off pretty strong considering Dan had to wake me up at the buzzer this morning. Thank Gandalf I can just drop into my chair without getting dressed or eating breakfast first, because oof!

Zentangle pattern Verdigogh

However, by lunchtime I was fading fast. I made it through nine tiles today, but my body was ready to lie down and my hand was getting shaky towards the end.

It was so worth the effort though, and I would never do so many Zentangle tiles in one day on my own. Which just shows me I am still capable of doing this at my own pace. I had been away from drawing for so long that I was having my doubts. You know how it is.

Anyway, it was a good day. Dan made sure I was fed, I liked some of my tangles, and—this huge—a wonderful friend made a donation to our GoFundMe that covered all of our moving expenses. I am so grateful to announce we are 90% funded!

I’d love to connect with you if you’re on the Mosaic App, whether yo are part of webinar 39 or not: EmilySuessCZT39

CZT Training Day 1

CZT Training Day 1

Today was the first day of CZT training. I had fun and learned some lovely stuff. But I am beat. (Drawing Zentangles is only exhausting when I’m trying to keep up.)

No spoliers of training to follow in this post. Promise. Just a recap of what I’m feeling and where my head is at.

I frequently tell myself I’m capable of doing hard things after I’ve completed something and am feeling accomplished. However, this webinar is going to be one of those experiences where I need to tell myself repeatedly during the thing to get me through. I ache from head to toe, and my brain is mush.

Sometimes sitting in a chair is incredibly difficult for me. Particularly when that chair is my desk chair. I bought it about 7 years ago off Amazon and picked affordability over comfort at the time because I was absolutely clueless about what the future held, and it is nothing short of brutal on my broken body.

But. BUT. I should sleep very well tonight. What I need to remember from now through Monday is that I can have all the ice cream I want when the the day is done.

Whether you’re completing the online CZT training right now or you’ve been on the Mosaic App for years, I’d love to connect with you there: EmilySuessCZT39

Help!

Help!

i just got off the phone with Two Men and a Truck, and let me just say: Help!

I knew it wasn’t going to be cheap, but money stuff keeps me in a perpetual state of crisis. Dan and I are physically unable to do this lifting heavy things thing. Hell, I can barely walk with my rollator. So I’m making a plea for your support.

If you’ve already given, I appreciate it so much! At this point, what we need most is to get this GoFundMe in front of more eyeballs. Shares are the internet’s superpower!

We’re guestimating a move date around the middle of October right now. Our Realtor comes to do a walk-through Thursday, and then Friday – Monday, I have the Zentangle certification seminar.

Deep breaths.

Updates will probably be sporadic. And short.

Feeling the Squeeze

Feeling the Squeeze

I’m feeling a little less cranky today, but still feeling the squeeze.

I took an edible last night and slept 11 hours. I don’t know why, but I haven’t been sleeping more than a couple hours a night for about a month now, and sometimes I just have to force rest. There are worse ways to do that than a chocolate peanut butter indica candy bar.

I tend to be a hesitant medicator for many reasons. A big consideration is that edibles are expensive. But I realized I had more on hand than I thought, and I will easily get through. Between my sensitivity to everything and my tolerance break, I am what Dan jokingly calls a “cheap date.”

Mom says they’re putting flooring in soon at Our New Digs, and it’s getting real folks. It could—COULD—be ready by the end of the month! Feeling the Squeeze!

Our Realtor is coming next week to help us figure the details of getting our house listed too. I have help with all of this stuff, but I’d be lying if I said my anxiety isn’t up a notch or two. I feel overwhelmed.

Largely it’s just that a lack of control feels disorienting and scary. Intellectually, I know things will come in steps and I should take them as they come without worrying.

But have you met my amygdala? It’s, uh, seen some stuff.

The day after the walk-through, Zentangle training will start. So I’m already trying to get myself mentally organized for that too. The oncology nurse called me this morning, and I told her I was looking at starting back on chemo around the 20th. Can’t be barfing and bed-ridden while I’m on a Zoom call, right? Honestly don’t know if I should just wait until after I’m moved? I need to be as functional as possible. But also living is a pretty major concern. So….

Of course everything is subject to change. Everything. I need to be thinking about packing and flu shots and cancer all at the same time but I only have the capacity to do like half a thing at a time. So, I guess what I’m saying is, prepare for me to do a lot of thinking-out-loud here on the blog, if and when I update.

Fingers toes and eyes crossed the next hearing from the January 6 Committee happens when I’m free to watch. Because this all about me.

I’m off to get moving quotes and make a list or ten thousand. Please consider sharing our moving/renovation fundraiser on your social media. Or you can make a donation:

On Medicare and SSDI

On Medicare and SSDI

You might be on Medicare and SSDI if you’ve got a daily Rx filled at the local pharmacy but you can’t pick it up yet because you’re waiting on a deposit from SSDI.

But also the clock’s ticking before the pharmacy gives up on you and re-shelves the Rx and it’s a “controlled substance” so refills are generally a pain in the ass for an extra fuck you. I’m so tired of needing money and meds all the dang time.

Dan’s meds are fully covered by Medicaid, but they made him go a whole year without the medicine his doctor prescribed. It caused his psoriatic arthritis to progress while Molina essentially put him on a different drug he and his doctor knew wouldn’t work to “prove” it wouldn’t work. Because money I guess. And I’m in a cranky mood today. Medicaid’s not better, it’s just a different kind of hell.

And before anyone gets all “see the government shouldn’t be involved” on me, his Medicaid Rx coverage and my Medicare part D are managed by private insurance companies. The government just gives them the money I gave the government. Don’t pick a fight with me. Tyvm.

That’s all I got. Welcome to #Crankfest2022, brought to to you by being on Medicare and SSDI.

Twinsies!

Twinsies!

I don’t have a twin, so I shout “Twinsies!” any time I have something unexpected in common with another human being. My husband’s twin’s wife and I share a birthday. Birthday Twinsies! My online friend and I share a name and chronic pain. Also Twinsies! The owner/operator of Brain Cancer Diaries and I have similar tumors in similar locations. Tumor Twinsies!

You get the idea. Anyway, Rudy, my Tumor Twin, launched a podcast, and the first episode dropped today. It’s a little trippy, and a lot relatable. And the reason I think you should listen to it is so you can understand me a little better. See, there are a lot of thoughts swirling around in my head at any given moment, but I can only write one down at a time.

Somewhere in the middle of Random Redux Review Episode 1, Rudy mentions how none of his past accomplishments are relevant anymore. I’m paraphrasing. But as I was listening I was imagining that gif of Meryl Streep and the hair I used to wash and blow dry everyday before I drove myself to work.

The more bits and pieces you pick up from him, the less energy I expend trying to explain certain things about living with this super annoying brain tumor. So you support his creative endeavors and give me a break at the same time. Because I have a really annoying need to be understood.

I mean, Rudy’s an entirely other person. Arguably more talented and stuff. Basically anything he creates is worthy of consuming (especially that one video episode he did with a very special guest) but this blog is about me. So I have to make this post about me.

Anyway. He didn’t ask me to write this, but you should subscribe to his stuff. So that I can pretend I give back half as much as I get in this life. Because, again, this is all about me.

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