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.)

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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.

Sing, Sing A Song

My injury that resulted in the c5-c7 disk removal / spinal fusion over a decade ago… it stole so much from my life. 😞 Not the surgery itself so much, but the resulting nerve damage that made my left arm rather useless. There are still days when I’m surprised by the discovery of something else “new” that I’m no longer able to do. 🙁 I should have kept a running list… but boy would that have been depressing to have everything I’ve lost, all in one handy notebook.

Well, my most recent neck “thing” seems determined to steal something from me as well. I’m still in the middle of the whole “cancer treatment” thing, with the first step having been the removal of the thyroid… and now while I’m waiting for the radioactive iodine treatment in a couple of weeks, in the mean time I can’t help but be a little bitter about a particular side effect of this surgery. 😠

I dunno… for all I know, this might not be something permanent – but considering that I’m about a month and a half out from the surgery, it’s probably gonna stick. You may or may not know, but music is everything to me. 🤨 Whether listening to it, playing it on a keyboard, crafting it via Amiga / PC tracker programs, or just singing in the car or even at karaoke back in the day. Well I’ve lost a big chunk of that passion, because I can no longer sing. 😟 At least in no way that I used to.

At first I just couldn’t hit the notes at all. Songs that I’ve sung out loud or in my head a thousand times… I now sound like any other shlub that might try to sing it at karaoke somewhere, to the cringes of the peanut gallery. 😒 With a conscious effort, thankfully I’ve been able to get some of my “pitch” ability back – but I’ve lost a huge amount of my higher range. 😢 I’m not sure if it’s because things got tightened up inside my neck, the same way the skin has on the outside (due to the new incision and stitches), but during those moments when I’m not hitting the higher notes – I can actually feel it pulling. 😣 It’s a difficult sensation to describe without the listener having experienced it themselves.

And yeah, I know… considering that I lost some of my range as a side effect of trying to free my body of cancer… I know that it probably sounds silly or greedy for me to be complaining about something that many people would see as frivolous, given the situation. 🙄 But seriously, when so much has already been taken from me, and singing was one of the few things that I just endlessly enjoyed, whether by myself or in front of people… it’s just another kick in the nuts that life has decided to send my way. 😡 “So… that one thing you’ve always loved doing? Yeah, well that’s about enough of all that.” Fucking awesome.

Meh… it’s not gonna stop me from singing, at least not when I’m by myself, so maybe, hopefully, things may continue healing in a way where I can get a little more of my voice back. If I would have known this was coming my way, I definitely would have recorded as many songs as I could before going under the knife. Years ago I recorded enough songs to fill 3 CDs, which I then shared with Mom and Dad and a few other people… but I never thought those would be all that I’d ever do, at least not until now. 🙁

I’ve never claimed to be a great singer. I’ve never even really claimed to be a good singer. It was more that I was good enough, and I recorded the songs that I did because I just love singing, and trying to sound like I love singing. 😏 I wanted people to be able to hear me doing something I loved, because of how it made me feel. Meh… it sounds dumb when I try to put my thoughts about it to words. 😕 Oh, and I don’t care if anyone thinks that this is all self-pity… because it is, and I think I’ve earned it.

Depth Perception

I’m not feeling too great, so I’m gonna keep this post short. Today was the day that Jim and his brother were going to the county fair, and he also wanted to drop off the Phil Collins concert ticket that he got me – so I just saved him the extra driving and time and met them at the fair. I wasn’t much fun for the Sweet Corn Festival, and I’m not sure I was a whole lot more fun today, but I did make an appearance. Plus I wanted to get some longer “real-world” footage with the 360 camera and take some “portrait mode” iPhone shots to see what Facebook’s new “3D” algorithm could do with them.

(Wow… vertical video shows up bigger than I expected. Click to make it “screen sized” at bottom of vid.)

It’s a neat little trick that they’ve come up with… something that I wish the phone could do natively… but it’s also something that once everyone and their brother learns how to do it, the motion sickness that it may cause will probably be enough that the peanut gallery starts demanding a button to disable this nerdy new trick entirely. But I’m feeling a little too “off” to fuss with that 360 video right now… not sure when I’ll get around to it, but don’t be surprised if it sits on the back burner for a while.

New 360 Cam Tests

Not gonna lie, I’ve felt miserable ever since the surgery. Zero energy. I’ve only been out of the house a couple times. Once to go through the drive thru to get some pop, and then another time to stop at the BK and gas station near Rockbridge to pick up some essentials and a Whopper meal. Not a big fan of everyone staring at the huge stitched gash across my neck… but the stitches come out tomorrow, and I’ll hopefully get the news about how bad it is or isn’t. I suppose it’s a positive sign that I didn’t get an early call from my surgeon before my appointment tomorrow, but I don’t wanna get ahead of myself.

But while I was in Rockbridge I took my new Insta360 One camera for a test drive. It’s a 360 camera like the last one I had, but it also has software that allows you to “control the camera view” after you’ve recorded – since it sees and records in all directions. This creates a standard HD video, but the “movement” of the camera has been dictated by either control points that you select yourself or automatic focused tracking. I’ve only done the editing on my phone so far, and there are some glitches, but at least I had the energy to try it the other day.

I haven’t had the oomph to go out and shoot a traditional 360 degree video that the viewer can control, but maybe I’ll set it up out in the front yard in time lapse mode and cover that type of test as well. So far I’m impressed, even though I really don’t know what I’m doing with the software yet, and I like how it erases the selfie stick – making it almost look like you have a drone that’s following you rather than a camera on a stick. And their stabilization algorithms are amazing from what I can tell so far.

Fun Facts: Since the surgery I’ve essentially done nothing due to the lack of energy. And there’s only been one day where I haven’t accidentally fallen asleep in my chair at least one time. Feeling tired, but not sleepy, but ploop… I’m out. It hasn’t affected my sleep much, thankfully, because it seems I can’t get enough of it. I also haven’t shaved, so I look like a hobo… being worried about shaving around my incision and slicing up all the stitches. That’s on the docket for tomorrow evening though.

Meh… that’s all I’ve got really. Just wanted to check in and drop this test footage. I don’t even have the oomph to go back through and insert emojis… heh

Behind The Mask

So it’s been a week since the surgery, and while the incision site seems to be healing well, I can’t say that I’m too impressed with how my body is acting. I’m anxious to talk to the doctor again about this, so I can find out exactly what’s going to be done to get me back closer to “right” again.

Each day I’ve tried to do this or that, to see how I feel… and I feel stuck at about ten minutes of activity before it starts to affect me. The energy just isn’t there, and I get overheated when trying to do pretty much anything. Again, like I’ve said before, I know that there will be adjustments to my medication that should hopefully help with this – but it’s just frustrating how I’ve kinda been “waiting out” this first week to see if things would just gradually get better, when it seems like they’re not going to.

I’m gonna take a shower today though, while keeping my neck out of the water, because these cat baths aren’t cutting it – and I haven’t washed my hair since last Wednesday, so I’m far overdue. I haven’t shaved either, since I’m nervous about getting the area around my stitches, so I’m looking rather homeless right now… and that doesn’t help to make me feel any better when I look in the mirror.

Meh… it’s just been a long week and I’m feeling pretty miserable.

Self-Inflicted

The past several days have been remarkably the same for me, so I’ve actually gotten into a flow… albeit an annoying one, since my body is still giving me a hard time. 😒 But I’ve been able to build up the energy to do a limited amount of “whatever” each day, but I also completely crash after I finish whatever it is that I was doing. So I just kinda have to go into each “thing” with that in mind…

It’s embarrassing being this worn down all the time. 😞 It’s not being lazy, but it sure looks like being lazy. As I’ve described to others, it’s like I wake up each day with only 10% – 15% in my battery, and once I use it up it’s just gone. That leads to unintentionally falling asleep for several hours during the day, and then only being able to sleep about that same amount that night – effectively splitting one 24 period into what feels like two “days” for me, with the second “day” consisting of me not being worth a shit.

But I’ve chosen my projects wisely over the past couple of weeks… getting all my laundry done and put away, the kitchen, living room, and bathroom all cleaned, I did a huge grocery shopping session today and put it all away, plus several other things that I needed to do like changing light bulbs in several ceiling fixtures. 😖 And let me tell you, having only one arm that I can raise above my head… removing heavy glass light covers and screwing in several bulbs was the most difficult (painful) thing I’ve done in a long time. With my ill-advised Memorial Day Walmart shopping trip being a close second. 😏

I actually went to Logan instead of the one in Lancaster, because I feel like I “fit” more with the Logan people at the moment. Heh… that sounds bad, but it’s accurate… I’ve never seen so many grumpy looking average shlubs in a store at one time. It actually made it easier to shop… looking around at all these people who looked like they were significantly more annoyed than me to have to be there. 🤷🏻‍♂️