Let’s start with the big news: I have a new primary doctor. More importantly, I like her. Which, if you’ve been reading here a while, you know isn’t an insignificant thing. I was a little daunted thinking about this task just after we moved here, but I put what I’ve learned as a professional patient to good use in selecting a primary care physician (PCP).
Basically, there are four things I look at now when I’m hunting for a new doctor here in the US:
DO over MD: There’s just something more humane about the way I’ve been treated by DOs. I’m not saying that all MDs are terrible and myopic—far from it. But I’ve never been treated like crap by a DO yet. So I figure why mess with what works.
Woman: It has historically been helpful for me to receive care from women. I’m not saying that all male doctors are terrible either, but my experience has been telling. Percentage-wise? Dudes are way more likely to be arrogant jerks. And arrogance gets in the way of my getting good care. Arrogance literally traumatized me. Not letting that happen again if I can help it.
Insurance: I’m on Medicare due to disability, and not every doctor wants to deal with that. I always check before I schedule.
Ratings and Reviews: Most doctors these days have been rated by patients, either on Google or Healthgrades or, you know, somewhere. I read those reviews. All of them. (Coincidentally, I just received an email this morning telling me people found my review of Dr. Lee Hartner helpful. Suck an egg, Hartner. You absolute ass.
So yesterday’s encounter went really well because one of the things my new doctor said was something like, “I don’t know a whole lot about brain cancer.”
Music to my ears, kids. I immediately knew I was in the right place when she said that. Doctors who admit they don’t know everything are magical. Like unicorns. I told her that was good, and maybe we’d both learn something.
“Also,” I said, “I have, uh, some trauma from a doctor who thought he knew everything and I knew nothing. So my brain tumor was mis- or undiagnosed for a couple of years. I’m going to be a little anxious every time I’m here.” My voice got a little quivery and I could feel a few tears bubbling. I was tired and trying to stifle the medical PTSD episode that wanted desperately to be let out and recognized. I didn’t cry, but I came really close.
Anyway, I told her about my extreme sensitivity to meds, how doctors always want to prescribe me medicine by weight and it always ends badly for me and she said something like, “I get it. I’m the same way.”
So I found a new primary doctor in one try. That’s nothing short of amazing.
Things kind of suck right now. I don’t want to list all the reasons why, so you either have to take my word that it’s worse than I let on or think me a drama queen with a penchant for vague-blogging. Honestly, I don’t care which it is. What I will say is that I have to make a trip back to the house I was hoping to have been done with and the New Digs only have one working sink–a wash tub–in the laundry room. I can’t tell if things are still hard because I set my hopes too high, or if things are genuinely hard. In the interest of giving myself the benefit of the doubt, however, I’m just going to say things are still as hard as they were, just in different ways.
The financial pressure that I had hoped would ease has not yet, and it’s impossible for me not to think about money constantly. Maybe once the house in Urbana sells? Maybe once we have a functioning kitchen? I don’t know. There are things we need but can’t afford and there are things we don’t need that I’m being pressured to bring back here. I love Dan. He knows this. He also knows that his refusal to part with material things makes my life infinitely harder because I’ve said so many, many times. So instead of dying mad about it, I’m going to type it here: His stuff burdens ME. Also my Mom is—and I say this lovingly—very particular when it comes to housekeeping . And we are not.
Fuck it. Let’s just write this thing.
It’s not that I wouldn’t like to have a tidy house all the time, it’s that two disabled people physically CANNOT. And Chad, our robot vacuum won’t run here. I contacted support about the correct app for the Neabot not being in the Google Play Store any longer and received a reply the next day saying to download a different app that, as it turns out, is also not in the app store. Call me a pessimist, but if customer support doesn’t know what apps they have published, I think we’re going to have to buy a new robot vacuum. So while I was previously very happy to have Chad and would have posted a link to his Amazon page, I refuse to recommend him now.
And leaving out affiliate links is no small thing for me either, because we are fucking broke. Again. No, we’re not in danger of losing the roof over our heads or going hungry at least, and I want to make that clear. But I have to find doctors and make appointments, and try to be presentable when plumbers and cleaners and electricians get scheduled. There’s no room for “panic about money again” in my datebook.
I need a haircut and to feel like I don’t wake up every morning with two different sets of eggshells at my feet. I need the thermostat to show up on my phone or the weather to stabilize so I don’t have to fucking get up to change it. And I can’t let any of that shit go very easily because I’m not just money broke, I’m energy broke. I’m not saying any of this to get help either, because saying thank you is also a fucking burden.
Again, I’m not always this cranky. But stress has reversed my chemopause, and my words are the sharpest thing on me right now. Speaking of chemo, other people want me to be taking it right now. Fuck other people.
I’m overwhelmed. People would help—have helped—but I can’t even brain hard enough to figure out what else to ask for. I’m shutting down. Not because I’m stubborn, but because I have already used up my spoons for the first and second quarters of 2023.
Earlier this week Mom said something to me about how we shouldn’t really have the pets, which hurt. I told her flatly that we got the pets before I was diagnosed suggesting the ever-popular excuse “Nobody predicted any of this in 2015.” She nodded in agreement, but it would be helpful if I wasn’t constantly defending my every fucking life choice all the goddamn time.
I’m trying not to let stuff get me down, but being in the middle of every unspoken conflict and trying to keep the peace is not anything I have the capacity to do right now. I deflect what I can, but I end up absorbing most of it. Which is probably why I’m muggle sick, sporting a cold sore, and perpetually exhausted. My Mom is in her seventies and can run circles around both of us. She has done so much, but the one thing she can’t do is empathize. It’s not a shortcoming, no one knows what anyone else is experiencing at a given moment, but it’s also not something I can handle well.
Until our kitchen and bathroom countertops are installed, we have zero use of our kitchen, and we can’t really unpack anything. We’re living out of boxes in various rooms and at least a dozen times a day one or the other of us is asking “Have you seen X?” We had to leave our refrigerator at the old house and are borrowing a dorm fridge for the time being. Mom is going to get a new fridge and let us use her old one, but Dan wants a French door fridge like we had and…Mom is getting a French door fridge. It’s her right to buy what she wants. And it’s Dan’s right to feel bitter about everything. And it’s my right to fucking scream until I’m blue in the face.
If you pray or send good vibes into the universe or whatever, please put in an ask that we actually get our kitchen and bathroom countertops on Tuesday as promised by the installers. At least once that’s done we can put stuff in cabinets and get rid of more boxes. I actually have a housewarming list on Amazon, but I’m afraid to post a link to it right now because we don’t have anywhere to put stuff people might want to give us. If you want to help, maybe watch a video on my YouTube channel instead, because I’m probably not going to be able to put up a new video for a while longer and I don’t want the algorithm to think no one cares anymore.
On a more positive note, we got our first bit of feedback on the sale of the Urbana house, and it was all positive. Despite our inability to fix cosmetic things, the structure is in excellent shape. And the feedback we got on the price we’re asking is “just right.” The house was listed Monday and we’ve already had 4 showings. That paired with the fact that inventory is so low in Urbana have me hopeful that it will sell soon and with much less fuss than when I tried selling off that hunk of junk condo I had to lawyer my ex-husband out of.
There’s more, if you can believe it, but I’m tired and typing hurts.
Boomer’s medical story really began on Twitter. Since I don’t use that site anymore, though, I thought I’d post an update here on the blog regarding his chronic hepatitis diagnosis.
I had no idea dogs could get the disease. But my first dog had seizures, and I didn’t know canine epilepsy was a thing until that diagnosis either.
I got a call from the U of I Veterinary Teaching Hospital yesterday with the final panel of results. The last test wasn’t for a diagnosis so much as to check for and rule out primary copper toxicity, which some dogs can get due to poorly regulated pet food here in the States.
But the vet concluded that copper toxicity is not the primary issue or the issue at all really; and so his diagnosis is chronic hepatitis.
Since Boomer is a rescue and we adopted him at a year old–give or take–we don’t know exactly how he got hepatitis. But the vet says the good news is that his liver is still functioning well.
With supportive meds, we hope to help protect him from inflammatory episodes like the one that prompted us to take him to the small animal ER last month.
I don’t really feel like talking about how much those meds are going to cost. But for the record I also don’t feel like I’m being ripped off, which is in stark contrast to how I feel about most human meds.
Anyway, Boomer is moving around like he never even had surgery for the liver biopsy. He is sporting an impressive scar on his abdomen though, and he is slowly regrowing fur where they shaved him for the operation.
He is the sweetest, goodest, handsomest boy. I can prove it too.
This week was wild. Not in a good way, and not even in a way that was anticipated. Tuesday my Mom and I were sharing a homemade smoothie, when things started feeling really weird for me, and I said, “Whass wrong wiff my tongue?” The TL;DR for those of you short on time is that for the second time in my life, a doctor has told me “I’m pretty sure it wasn’t a stroke.”
The first time was twenty years ago. Because eventually I determined that episode was a migraine, and I am inclined to believe that this episode is too. Though, if the symptoms that prompted the folks in the Carle Emergency Room to call a code stroke are migraine prodrome and aura symptoms, it’s the most horrible migraine I’ve had to date.
In fact, I still have the symptoms: my left side is experiencing all kinds of neuropathy ranging from pins and needles, to tingling, to burning, to numbness. My tongue isn’t working right, and I’m having a really hard time speaking clearly because I can’t articulate many interdental consonants—t, d, th.
It’s Saturday, so that’s going on five days now.
The muscles from my mid-back to the base of my skull are locked in a spasm. And I am this close to begging my doctor for a muscle relaxer to see if that will help any. So far I’ve just been taking Tylenol and a half dose of my cannabis edible before bed. I wake up feeling more relaxed first thing, but as the day goes on? Ooof.
The emergency room doctor ordered a CT scan, an MRI, an EKG, and the typical array of blood and urine tests and is confident I didn’t have a stroke, but because they can only tell me what I didn’t experience and not what I did, I am a little concerned about starting chemotherapy on Monday.
Oh, have I mentioned that yet? It is supposed to be 110mg of temozolomide every day for 28 days starting August 23. And I guess I’m still going to go with that, because if this most recent Not-A-Stroke has anything at all to do with the tumor (and not, say, just the stress of everything right now) I think delaying chemo would be a bad idea.
Plus, I just really want to get it over with.
Anyway, I am being very careful about how much screen time I’m getting each day, so I’m going to cut this post short. I’ve got more to say, but it’ll just have to wait until later.
If you feel like sending some good vibes into the universe, send some out for me and my family because today would’ve been my Dad’s 74th birthday. And it’s definitely hitting me harder than the days that were not his birthday.
Other quick updates and then I’m out: Dan is getting some meds (not THE meds though) on Wednesday, which is a relief. He is also setting up my chemo nest in the guest bedroom, so I’ll have a TV and an Xbox. (It gets lonely back there.) I am still waiting on the ER bill to come through, so please bear with me as I push those fundraising links once again:
Got $10 and want to help Emily? Here are the ways you can donate:
Sunday night was…weird. I went to bed early because I was feeling…weird.
Dan came to check on me. “What’s up. You doing okay?”
“Well, what’s wrong?”
“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”
Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.
Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?
I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”
Spoonies learn quickly that ER visits are borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.
Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.
Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.
I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.
Instead, she said, “No, as hard as you can.”
When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.
Whatever that means. How is it possible to be in pain and numb at the same time?
Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.
Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.
That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.
There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get these results:
Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?
Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.
In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.