Miserable

What an awful night… and I’m not sure if it’s over yet. I don’t know if it was something specific that I ate, or a combination of the different things that I ate… but yeah, spending every couple of hours in the bathroom yacking was not how I anticipated last night going. And this is a little gross, but the main taste coming back up was the sauce from the meatballs… so I don’t think I’ll be able to eat any more of those.

And of course it had to start right after I decided to message some lady last night on Facebook about a camera that she had listed for sale. I told her I’d come in town as soon as I was up and around the next day, and now I’m all barfy and bleh. 🤢 I think I’ve entered a window of a couple hours where I should be okay again though, so the deal is still on. (My throat feels really effed up now, though… I’m hoping that what I’m feeling isn’t serious or permanent damage around my thyroid surgery area. 😧)

Hopefully it actually works like it’s supposed to… because I’ll probably use it as a camera that I just keep in my car for moments when I need a “better than my cell phone” camera but didn’t realize it until that moment. It’s a Canon SX210, which came out in 2010, but it’s 14MP and it’s got a 14x zoom lens – which is pretty good for a little point and shoot. Can’t beat the price of twenty bucks, though… which is low enough that it outweighs my aversion to interacting with the camera’s human former-owner to get it. 😏

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Amish Country

So, the very next day after all of that dumb shit happened around my doctor appointment, that was the day that we had already set aside for going up to the “Amish Country” up in NE Ohio. 😐 The entire evening before, I was still livid – so I already knew what my plan was… stay up all damn light, do as much research and “planning” regarding my WC stuff as possible, and then as soon as the sun came up (as long as Genesee woke up early) we could be on our way. 🙂 And that’s actually pretty much how it went, thankfully.

I’m not sure how I did it… all of it… but the trip was a success, we had a good time, I kept my mind fairly free of the previous day’s drama, and I also didn’t feel myself falling asleep until we were about a half-hour from home. 🤷🏻‍♂️ Despite it being off-season, and rather gray and plain up there, we still made it a “full sized” trip – leaving home around 8a and getting back somewhere around 7p. 😧 And I even made myself to stay awake for several more hours, which allowed me to force my sleep schedule back on a “normal” track. Honestly though, I give all of the credit for anything “good” like that from the day to Genesee. (Actually, she gets the credit for that for the entire duration of her trip here. 😏)

I drove, so we did the official Batina path and itinerary – as if we were traveling with Aunt Carol. 🙂 I’m not gonna spell check any of this… but we started by going up through Charm, then to the Guggisberg Cheese place – where I got some gummy bears and meat sticks, over to Miller’s Bakery – where we stocked up on cheese crowns, followed by a short drive to Hershberger’s farm store – where there were unfortunately no flowers or critters, but I did get some Amish sweet pickles, and then it was off to Berlin for a stop at an antique/craft mall and thrift store, along with the mandatory stop at Heini’s Cheese – where we taste tested all sorts of weird cheese and fudge, and I left with some co-jack and green onion varieties… 😳 and then the last stop was at Wendell August… the place where they create every type of carved and stamped metal “thing” that you could imagine. 😊

Dinner was also at the traditional Aunt Carol place… a huge pretty-much-Amish-style restaurant / buffet – where we both poofed ourselves on potatoes, noodles, stuffing, shredded chicken, rolls, misc salad goodness, etc. 😁 It was too cold to sit out on their long wrap-around porch to un-poof a bit before hitting the road again, and we were starting to lose the light anyway – so we decided to just keep moving. (We took 77 south to 70, and even stopped off at Gabriel’s in Zanesville… and I’ve got no idea how I summoned the energy for that.) Then we took 22 to Lancaster from Zanesville, basically cutting a south-western path that saved us quite a few miles compared to taking the freeway over to Millersport and down. 🤔

It wasn’t an ideal trip on paper… off season, cold, no sleep, having already been busy all week… but it ended up being perfect. ☺ Got all the goodies that we wanted, kept myself distracted from anything that might have made me angry, had quite a few flashback memories from different trips with Aunt Carol and my grandparents, and the “goody” from the trip lasted through the evening, even after I was home and Gen was off to her next stop. 🙂

Awesome Timing, Thanks

I went and saw the new “physician’s assistant” fella yesterday. He first confirmed that Dr Walter is still my doctor of record and that everything will still go through him… but hopefully after this initial “getting to know each other” appointment (for which I’m sure he’ll have to confer with Dr Walter at least this time) he’ll be able to handle most everything while leaving Dr Walter’s time free to help patients that can actually still be helped, patched up, or even repaired. That’s where his time should go.

Thankfully though, I really like this guy. Dr Walter and I have a decade of history from me going to that clinic for the same problem… so, obviously, even starting to get new guy on the same page as us would be impossible in one visit. But that didn’t stop him from intently listening to everything I said, as well as already offering his preliminary thoughts and ideas about my condition and treatment. I don’t want to get ahead of myself, but the positive vibes were a pleasant surprise. I mean, it was really a crap shoot (what type of doctor I could have ended up with) but I should have known that their office wouldn’t hire a jackass when not a single one of them already there acts that way.

Okay, so that was the good part of the visit. Nothing has changed yet, but I told him that I appreciated having “new eyes” looking at the situation, and letting him know that I am willing to try changing some things up if he, Dr Walter, and I think that it could help with the problems which have slowly been getting worse over the months and years. I then began the walk to the front of the office to make my next appointment and hit the road, when I was told that Laura, the workers’ comp “saint” of the practice, needed to see me before I left.

She told me that my case manager contacted them and told them that I was non-compliant with my scheduled appointments, and that I was also non-compliant with getting my medications filled each month. Now, Laura has been there since the beginning with me, so she (like me) knew that what the case worker was saying was complete bunk. Before I could even say anything, Laura told me that she had already faxed more than sixty pages worth of documentation to them, to let them know that they are either full of crap and are trying to jerk me around again, or that they are incompetent. (My words, not hers.) I mean, how many times have I bitched here myself about how nearly every damn month I have to make multiple calls, multiple visits to the pharmacy, and often still I’m not “allowed” my medications until days after they’ve forced me to run out?

Based on what they are claiming, they are now only willing to pay for one doctor visit every three months – while certain medications that I take require me to be seen every thirty days. (And it sure sounds like their eventual goal may be to straight up “kick me out” or void their obligation to me.) So, this is what I have to deal with now. And I really need some dumb shit like this, right now, when my plate is already overflowing with stuff that is pushing my health and emotions to their limits.

But that’s what I’ll be doing tomorrow, gathering up all of the current information about whoever is my acting case manager, figuring out which of my attorneys handles this type of issue, and probably trying to figure out how to get records from my pharmacy – and maybe a statement from the pharmacy techs who know how I regularly get the runaround – and get everything in some kind of order, to where I can start making calls on Friday.

I had a good day today, and I do want to blog about it at some point, but I’m still furious about this. Yes, it’s all easily, easily refutable… and there’s absolutely no way that I won’t win if this gets forced into another IC hearing or actual court case… but the fact that I have to do it at all, and that they still seem determined to deny me as much of my treatment as they can. I don’t understand how any human could or would take a job like that, where if they complete their task or reach their goal, a person’s life is ruined.

If I keep talking about it I’m not going to be able to sleep again tonight, but that’s the gist of how my Wednesday went. I’m glad Genesee is still in town, because today I had to just pretend that yesterday didn’t happen… just for this one day, so that my brain wouldn’t have a meltdown from immediately trying to fix all of this. I already spent the entirety of Tuesday night through dawn on Wednesday wide-awake, sitting in bed with my phone, looking up countless things regarding my case and treatment, and sending them to the printer so I could compile and highlight them later.

When there is a reliable, well-documented, years-long pattern of delaying or denying a patient’s medication or treatment, when multiple hearings and court cases have already made it clear that the patient is legally entitled to all of it… even if it’s done in a way that technically isn’t in violation of their obligation – you’d still think it might reach a point where a judge would see that it’s nothing less than harassment, and I have to believe that one of that patient’s litigating attorneys would smell blood in the water at that point, so to speak. I’m not a squeaky wheel. Why do they want to push it to that point?

(Okay, tomorrow’s entry will be a positive one. I just had to let this out, for better or worse.)

Sorting

Genesee’s spring visit here got cut short, so she’s making up for it on this trip. She got to Ohio early last week and plans to stay through my birthday. She’ll be visiting this person and that person, but she’s using here as a “home base” for most of her stay.

That was the plan from quite a while ago actually, with her helping me go through all of the tubs of Batina family stuff. For both my grandparents and my aunt, when they passed away I ended up saving way too many of their things that were important or keepsakes to them but hold no meaning to anyone else. As much as I want to save all of those things, it only makes sense to narrow it all down to something manageable.

Cards that they had received from decades back, candles, keychains, weird little nick knacks, photos of their friends, photos of me… where each one seemed to have at least one duplicate of random size… heh… and then of course there were receipts and manuals galore… and you might ask, “Why did you save that stuff in the first place?” Well, if they had stuff stored or marked as something important, I assumed it was all important. But just knowing that they saved it made me feel like I had to save it.

So that’s where Gen comes in. Without assistance I don’t think I’d be able to get rid of any of that stuff… so she and I sat a couple nights and went through most of the tubs and boxes and finally got it to where I’m keeping only the stuff that needs to be kept. There’s still some more things to go through, but I’m betting that by time she leaves to head home we’ll have taken care of all of it. Plus it’s nice that it means we’re stopping and looking at each thing before deciding its fate, which I think they would be happy about.

Checking In

Haven’t been able to shake this funk. 😕 Started with that shitty low-iodine diet, then the self-imposed house arrest so I wouldn’t unintentionally expose anyone to radiation, and even now after the scan the other day I’m having a hard time bouncing back. And I was only hoping to bounce back to “meh” rather than “okay” or “good” since I know those two options are unavailable to my brain right now. 😔

It’s not even really about my own stuff… it’s just tough knowing that Mom has been having bad days recently, and knowing where things are eventually headed. 😟 It’s not even a conscious choice… but I have a hard time attempting a good mood when I know Mom’s going through things that certainly won’t allow her mood to be that great. And like I’ve mentioned, it’s not just her… my friend Christina just passed, another couple of friends are still fighting different types of cancer as well, dealing with my stuff, worrying about Mom and Dad… it’s just hard to break out of the “bleh” that I feel for all of those things, even though I know nobody would want me to be “bleh” on their behalf. 😏

But anyway… my scan… I think I may have mentioned that I really didn’t know the details before I went in, although all of my assumptions were correct. I don’t dare google anything about thyroid cancer, because I’m sure that I’d accidentally expose myself to horror stories that would make me stress more than I already am. 😳 But the imaging machine looked like an open MRI for the most part, although not only did it scan in that traditional method, but there were parts during the process where the entire thing would slowly rotate all around me as I was lying there. 😬

I didn’t have to get into a gown, and only needed to remove my keys, wallet, belt, ring, etc. The most difficult thing was lying flat on my back for an hour. 😣 Whether I’m sitting (usually on the floor) or sleeping (either flopping around or in one specific “good” position) I rarely maintain a posture where I’m completely straightened out and flat. Thankfully the machine made little noise, and nothing even close to the anxiety inducing buzzes and thunks of a damn MRI machine. So all-in-all it wasn’t as bad as it could have been.

But it sounds like the scan was just a scan, since all of the current treatment had been ongoing since the week prior – as the radioiodine 131 was flowing through me and into any stray, dying thyroid bits that remained after the surgery. 🤕 The scan basically just documents any little glowing specks… at least I hope that specks are all that’s left… then in several months I’ll have to do it all over again, and the results then will be compared with the scan from the other day. 🙏🏻

I do have another appointment scheduled with the endocrinologist in a little more than a month, where I’ll have to do all my bloodwork again so they can check all of the various levels that indicate how good of a job they’ve all done to this point. 😷💉😐 It’s difficult knowing that there isn’t really an “Okay, we’re done. You’re good.” with this. 😔 They’re not able to tell me that I’m cancer free, because even if the scans show zero specks, it’s just one of those things that a person has to live with, have regular tests for, and if specks are found again in the next scan… then the cycle will start all over again. 😟

I’d say that I get a break from worrying about all of this for a while, but I don’t know if there could be something in the recent scan that would make my doctors go “Ahh, shit…” and require me to come in for something else before my already scheduled followup. 😒 Next on the agenda, though, is my first full appointment with the new shrink on Monday. 🙄 I’ll certainly have a variety of things to tell her about, which make me the way that I am right now.

LOAD”*”,8,1 … READY … RUN

I don’t want tomorrow to feel like today did, so I’m gonna try my hardest to push aside all of the bad things in my mind – and hopefully do some things that I know should be fun. It’s so strange how the past few years have kinda stolen “fun” in general from me. I’ve got two current game systems, several different cameras, that Playstation VR system I haven’t even set up yet, a couple decent musical keyboards, the C64 Mini system I got the other day… and all of it just sits here.

I think the more that bad, sad, or unfortunate things started happening to me, my friends, and my family… the less able I’ve been to allow myself to have fun. Even if I have moments where I’m not feeling bad about my own shit, I guess I sorta feel like it’s not right for me to have fun when some of my friends and family are dealing with their own bad, sad, unfortunate shit. I know it’s dumb, and I kinda know how I got here… but that doesn’t matter… what matters is changing my way of thinking and letting myself just enjoy shit now and then.

I have to just accept that some people might roll their eyes or have something shitty to say if they think I should be doing “this” when I decide to do “that” – because if I live my life making sure I make everyone else happy… well, that’s just some bullshit… but believe it or not that’s how I’ve been for a long while now.

Meh… but anyway, tomorrow has to be different. I think once I straighten up the living room a little bit I’m gonna hook up both the C64 Mini and the PSVR. Who would have thought, back in the late 80s, when Mom, Dad, and Aunt C bought me a C64C, 1541-II disk drive, Okidata 120 dot matrix printer, and 13″ color TV… that almost 30 years later I’d be so excited to have a baby version of that old computer that I can play on my 50″ HDTV. Oh, and I also have that CD of scanned slides that I still need to check out.

So many things stuck with me from my childhood. The computers, the classic video games, the nerdy interest in photography, radio, musical keyboards, and tech in general -and even a lot of the music from back then that still means the most to me… all of those started as these little seeds that were planted back then, which are still growing strong in me to this day. Well, maybe not “strong” for some of them, but I still want them to be…

Tomorrow’s gonna be different. Even if it’s just tomorrow.