Method To My Madness

You may or may not have noticed, but over the past many weeks – especially in the time right before and after my scan – I’ve been posting a lot more entries to the blog than usual. Even if not in quantity, I’ve definitely been ramblingΒ more than I typically do. Now that I’m most of the way past that phase, I’m probably gonna end up slowing a little with my postings – not necessarily on purpose, but because as things start to feel like they’re returning to normal I have a feeling I just won’t feel like I need to post quite as much.

There’s no way to explain to someone who hasn’t gone through it, how it feels to sit with an unspecified amount of cancer in your body, jumping through all of the hoops for the tests, which includes gradually wearing down your energy levels to nothing, and then just sitting there, not knowing, waiting, worrying, hoping, etc. 😟 There isn’t an emotion that you don’t experience, ranging from hoping that it’s completely gone – to hoping that if it isn’t gone, that you at least get an expiration date… just to finally get rid of the uncertaintyΒ more than anything else. 😞 I suppose I can only speak for myself, but I don’t see how anyone wouldn’t feel most of the things / ways that I’ve felt. πŸ€·πŸ»β€β™‚οΈ

But my way of dealing with all of that (or distracting myself from all of that) was by posting here. Didn’t necessarily want to talk to anyone about it in person, or in any detail or whatever… but also couldn’t just sit here and stay all bottled up about it. So whether my posts had something to do with my medical stuff or not, it’s been a big reason why I’ve been so active lately. Now, I’m not saying that I’m gonna stop blogging… I mean, rambling is sort of my thing, it’s more that I just wanted to come here and finally explain.

Of course it doesn’t help when in the middle of all that, I get new “neck stuff” (unrelated to cancer) to eventually be concerned about. πŸ˜’ It’s hard to stay positive and try to get back to normal when just as you’re finishing up with one thing, something else fairly big comes along right on the tail of the last thing. And that’s what a lot of my postings have been, whether they seem like it or not… trying to find the silver linings, trying to reassure or even convince myself that I have the ability to take the good for what it is, and work around whatever negatives are left after that. (Bleh… that sounds cheezy.)

I’m still not back to normal, but I’m definitely getting there. I found out, thanks to the festival, that even though my energy levels are a whole lot better – there’s still a wall there to be hit, and I still don’t get a sign when I’m approaching it. I’m assuming that’ll just continue to get better though, because it has so far. I’ve barely been doing anything with friends yet, and still haven’t been on Facebook for over a month now… so I’ve still got a few of those types of hurdles to get over, but it’ll all come in time. πŸ™‚ I’m not setting goals or time-frames or anything like that… just trying to always make sure that I keep moving forward with all of it. And as for the stuff that I’ll have to face in the future, whether it is spine related or cancer related (or something as of yet unforeseen), I can’t let it chew up all my thoughts and actions between now and whenever that will be.

So whether it helps me because I’m just getting stuff out, or because it also helps to reinforce the positive thoughts… whatever it is, it’s just what I’ve needed to do during this more-uncertain time in my life. πŸ€·πŸ»β€β™‚οΈ But as I continue to get better, it should require less energy (or rambling about it) in order to keep the progress going. I made it up and over the most recent hill, so now I can hopefully start to coast a little more if that’s what I decide to do.

Meh… I could obviously continue with more on this topic, but this basically explains what I wanted to be explained. We’re all works in progress, and I’m no different. And if it’s not one of the issues that I’m currently focused on, there’s always gonna be something else that tries to damage my calm and toss some grenades in my life’s direction. 😟 I’m just hoping that I can take the things that I’ve learned from dealing with the current situations and apply them to those other things when needed. πŸ™‚ Maybe get a little better with the “ups and downs” since we all seem to come with an endless supply.

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It Shouldn’t Be This Challenging

Today’s been kind of a flop. I didn’t have anything on the schedule really, but even after not getting much sleep – I still woke up with some motivation to work on one or two of my extra projects around the house. Also, between the lack of sleep and the shitty weather, I knew today wasn’t a car or glasses day either… so I’ve spent most of the day waiting for my upset stomach to go away so I could do a little of the work that I wanted to do without feeling like I was gonna yack. 🀒

It did make for a nice lazy day though, something that I sometimes struggle with allowing. Texted with Dad quite a bit, along with a few other friends, and then finally decided to go in the kitchen to chop up some green peppers to make some tuna salad for sammiches – to hopefully settle my belly, which it did. πŸ™‚ And to be honest, I was glad to just wake up today without my back being screwed up… something that it was showing signs of before I ended up falling asleep early this morning. 😯😬

So it wasn’t really that today was a flop… it was just unremarkable for the most part, so I wasn’t looking at it in the right way. πŸ€·πŸ»β€β™‚οΈπŸ˜ And now that I’m feeling better since this afternoon, I know it’ll help my mood to get some more of my “unessential” stuff done before whenever I fall asleep tonight. Normally my lack of productivity would have made me a little twitchy, but I think I’m still riding along on the thyroid med train – still seeming to get back a little more energy with each day that passes. πŸ€’πŸ€žπŸ» I wish I could explain how bad the bad days really were just a few weeks ago, to emphasize how these little improvements are still a big deal.

I think I might go ahead and pull out the 360 cam and charge it up, in case I feel up to shooting any video at the SCF here in a few days. If not that, I plan on taking a lot more regular pictures this year. It’s been a few years since I’ve bothered, especially since last year’s trip was kind of a shit show from the start. πŸ˜’ And with my mood being decent lately (for the most part anyway…) I’m hoping that it’ll also nudge me towards getting interested in my hobbies like video and photography again. 😟

Every now and then Jim will post one of goofy our old videos on Twitter and I’ll come across it, where we were just goofing off and having fun for random Squirtman themed videos, and it makes me realize how long it’s been since I could truly say that I was having fun at anything, or that I was in a good mood for more than a couple hours out of one day. 😞 I’ve gotta start trying to figure out how to get a little more of that back, despite all of the other non-fun stuff I’ll obviously have to be working on (or facing) as well. 🀨 It wasn’t that many years ago that I was a totally different person, and it’d be nice if I could find my way back toward that at least a little bit. πŸ€·πŸ»β€β™‚οΈ If my body will just stay physically un-fucked for a while, I might have a shot at it.

Meh… just thinking out loud again I guess…

My Caregiver?

This poor cat has to spend all of her time alone with me. πŸ™„πŸ€·πŸ»β€β™‚οΈπŸ˜Β I guess she could hide if she wanted to.

But sometimes I really think that when I’m feeling shitty for an extended period of time, it actually makes her feel shitty too. 😟 I honestly feel like she worries about me, which turns her into my shadow for the duration of my “bleh” spell.Β So I just do what I can, to spoil her and keep her purring. 😺 So far, so good… 😌

(Heh… this cat just trusts me way, way too much. She’s such a weirdo now… but a happy one.)

Gap

I know it’s been a good chunk of time since my last entry, but I’m not even gonna bother going back to catch up on what I’ve already written… because honestly not a whole hell of a lot has been different, so I don’t have that much to write about. We’ve had a couple decent snow storms, and a couple days where the temps were in the negativesΒ in the morning, so that’s managed to keep me at home just as much as my normal anxiety issues usually do. 😏

One out of the ordinary thing… I did take a trip to ‘Da Boat with Bri for two nights last week. 😊 We’ve talked about it for months, and have had it in the planning stages for the past several weeks – so we were relieved to have pulled it off, considering that both of us have any number of things that could have popped up to wreck the plan. 😳 Last time she was down there with me was years ago when Dezzy also came along, and they couldn’t even get onto the boat back then.

So of course that’s why we were really looking forward to this trip, since she could see and do everything along with me this time. We took a bunch of outfits and props and shit, just in case we decided to do baby belly photos, but it was too easy to just be lazy in the room or going up to the boat to have fun… so very few pics were actually taken, and that was absolutely fine with us. πŸ˜‹ Our luck would come and go, but it was good enough at times that I could actively see the gambling bug taking hold of her brain right before my very eyes. πŸ˜… Heh… it wasn’t really like that, but she did have a good time and played enough to where she developed favorite machines and everything.

This past week or so has been nice… not having any appointments, not forcing myself to worry about any responsibility stuff. 😐 Heh… that sounds bad. I just mean that I let myself take a break from all of the adulting for a while, although I’m picking back up where I left off here in a bit. (Catching up on the bills that have been stacking up in the mean time) Oh… I do have another “since our last episode” story that I almost forgot about. It’ll be coming up a bit later, if I manage to get through all the bills this evening…

But this trip… I dunno… the more that I think about my medical stuff, the more that I want to do stuff with my friends while I still can. πŸ€’ I have no reason to think that I won’t be able to do things for years to come – but just in case, ya know? Even Dad, a while back, reiterated that point to me a few times… that I need to stop worrying so much, and sometimes just do the fun thing while not worrying about anything else. πŸ€·πŸ»β€β™‚οΈ

Same Ol’ Song and Dance

Ended up staying awake for 28 hours straight, then slept from 8a to 3p today… so now I’m likely to be up all night, which doesn’t really help with my plans for tomorrow in the early afternoon. I’ll keep my fingers crossed regarding that, but man… so glad to finally have my medication in hand. It took some oomph to get up and go in town to get it, but yeah… this month was ridiculous when it came to getting these filled. They weren’t even new scripts, just refills.

If I didn’t know how much I’d hurt, and how negatively my ability would be affected, I’d try to wean myself off of this shit. Not only do I have to go through this routine nearly every month, but in the days leading up to when I call for my refills – I’m already starting to worry what type of clusterfuck will happen this time, that will end up with me going through temporary withdrawals. So basically 1/3 of every month is either spent worrying about my refills, waiting for my refills, or suffering withdrawals from being delayed from getting my refills.

Gah… so tired of it. But yeah, I think frustration built up over the past couple of days, which is why I ended up barfing out those two super-long recent blog entries about all the stuff going on down in Florida. I needed something to take my mind off of how I was feeling, and that seemed to do the trick. But it looks like I’m going to have to set back even more of my meds for the end of the month from here on out. Shouldn’t have to short myself each day just to make sure I don’t run out when I get screwed over, but yeah, I guess that’s what I have to do.

Believe it or not, even though my court case was back in the middle of February, they still haven’t made a determination. That might account for some of the delay, if they were waiting and hoping that I’d lose my right to those meds, but who knows. Whenever I do get a chance to talk to my lawyers next though, I do intend to point out what’s being done each month to see if there’s something that they can do – or even if it could be seen as some sort of spiteful or unjust action that could carry some sort of penalties for them.

Reality tells me there’s not shit they can do, that I can be yanked around basically as much as they wanna yank me around, and that it’s up to me to figure out how to protect myself towards the end of each month. Ahh, what a feeling.

Faith In Medicine

Got up early yesterday and went and got that steroid injection taken care of. Since I was having it done at a local “surgery pavilion” (yeah πŸ™„ I know) it ended up feeling like the real deal. 😯πŸ₯ I had to strip and change into a gown in the staging type room, got all wired up with sensors and an IV, was rolledΒ way down to a procedure room full of huge lab machines, and when I was done they wheeled me all the way back up to a different area (recovery) where, after having my vitals taken a couple more times, I got dressed again and then had some bloke guide me to the exit. 😳

The doctor that did the procedure is the same one that I’ve been seeing every month for the past decade, so after seeing him for years in “diagnostic mode” – it was kewl to see him in that environment, runnin’ the theater, calling out to either of the nurses for this and that, and then of course jabbing me with needles. πŸ’‰πŸ˜¬ And I’ll admit, some of the stuff hurt a little more than I expected. Kind of like when you get a tattoo on your bicep, the underneath part is super sensitive… well, in order to get me numbed up, the area(s) that he had to hit repeatedly with the lidocaine injections had that same “YOWZA!” effect.

So, the site was numb, and he went in… needle, then saline, then dye, then… oops, a bit of blood. 😯 I’m not sure exactly how bad that could be, but none of them seemed worried and he decided to try one level lower instead. (Which means I had to go through the anesthetic process all over again. ☹ Yay.) This time it went without issue… but let me tell you, it’s quite an unusual sensation having extra fluid (as limited as it probably was) pumped into your spine. It’s like it’s used to a certain “normal” pressure, and that bit of extra… at least for me, it was like someone plopped down on my back for a few minutes. So strange.

My doctor is awesome though… and I’ve probably said that to various people in various places over 100 times by now. 😏 But he talked to me through the whole thing, told me everything that was happening, everything that was getting ready to happen, and then when I was in the recovery room he came out and showed me the pictures, described it all over again to make me feel at ease, and that was about it. πŸ€— There was a lot more “fuss” than I was expecting, but if I notice that it’s making a difference over the next few weeks I certainly won’t object to doing it again when needed. 🀨 ‘Cuz something’s gotta give… something has to eventually work better on me again, right?

The day before all of this, I stopped in again to see Mom and Dad. πŸ‘ͺ As I was telling him about what I was getting ready for, he mentioned the procedure that he was getting ready to have… but he said it in such a “matter of fact / no big deal” type of way that I didn’t really pause to consider the seriousness. πŸ€” More serious than mine, anyway. A heart cath is one of those common-ish surgeries where you just expect that cardiac surgeons can basically do them in their sleep… but each patient can obviously be very, very different – so you can’t really say for sure how safe it is or isn’t. πŸ‘¨πŸ»β€βš•οΈπŸ‘πŸ»

But, and I think it started way back when Mom had a brain tumor removed, for whatever reason I just have a strong faith in medicine, the people that practice it, along with the technology and science behind it. πŸ€·πŸ»β€β™‚οΈ Yeah, I’m all fucked up now, but not because of the fusion surgery… it was because of the delay of the surgery. So that’s why I wasn’t sweating my injection yesterday, and why I’m only slightly sweating Dad’s upcoming procedure. Oh, and you may have noticed that I didn’t mention God in all those things I said have faith in… but yeah, he’s absolutely watching over all of it, for all of us, so while it’s not a guarantee – it does add a subconscious sense of “unconcern” when thinking about it all.

“Wake Up, Case 1485729-4”

Fell asleep around dawn and then was awoken by a phone call from one of my attorneys a few hours later. πŸ˜’ We’ve got quite a bit of outstanding issues right now, and after the long weekend I could almost feel this call coming… so much so that I didn’t turn my ringer off, since I did need to talk to him.

This entry might as well be titled “What Else Is Wrong?” since, in part, it’s essentially going to be a sequel to my most recent post. As you may or may not know, I try to keep my online presence as free as possible from a) bitching about my pain/disability, and b) talking about specifics of my workers comp case. Partially out of pride, partially because nobody really wants to hear about it anyway.

I’m not sure I even remember what I used to be like before all of this dominated my life. I know it’s not pleasant now, to put it extremely mildly, and I know it’s a constant pain in the ass… so even though it’s hard to remember, I do miss the time when my life was my own and I wasn’t being led by the nose through by doctor visits, IC hearings, physical disability, medication requirements, mental stress, pharmacy policies, insurance companies, and now actual an actual court case. 😞

I’m just frustrated because we’re less than two months away from the court stuff starting and so far the settlement stuff is going nowhere. πŸ˜• Their side will submit their brief to the court, my side will have a few weeks to reply, and then it starts getting serious. The court will likely want to depose any doctors that have seen or treated me, on both sides, which means I’d have to hope that I could essentially “rent” my doctor for half a day to give testimony – which would be ridiculously expensive. 😣 (Not to mention ridiculously annoying since he’s already submitted report, after report, after report, in writing.)

So my attorney is going to find out how much they’ve paid each year, on average, for my treatment and medication – and then tomorrow or the next day, when I go to the pharmacy to pick up this month’s meds, I’m going to have them print out what the “out of pocket” cost would be for each medication if I was paying for them with no insurance at all. πŸ€“ With those figures we’ll again try to come up with what we believe is a fair settlement, and then they’ll have to decide if the continuing costs of fighting me are worth it – rather than just settling this and making me go away.

I’m just worried that we won’t be able to get this done before the date of the first hearing. I’m sure it’ll be (us) “Here’s our offer.” followed by (them) “Well, that’s nice, but this is what we’re willing to pay.” followed by (us) “C’mon, get out of here… we need at least (this much)” and then (them) “We’re gonna have to think on this.” with (us) “Well we’re gonna have to think on this too.” Heh… so I don’t know what the odds are of avoiding this court case at this point, but I’d think they are slim.