I Have My Reasons

Still hangin’ in there, still waiting through this process… 😟 of which the next step will be Monday, when I’ll get (what should be) my final lab work done before they decide if my levels are where they need to be for the radiation dose the following week. πŸ’‰πŸ˜¬πŸ“‰ I’m more anxious about the test than I am the dose later, simply because there’s a chance my levels won’t be right – which would mean going even longer without taking my thyroid meds, until they are. 😐 Without elaborating, I really, really don’t want to have to do this a day longer than I absolutely have to.

Unless it’s unavoidable I’m pretty much just staying at home and trying not to move around too much, to keep from throwing everything even more out of whack. I can’t fake my way through feeling okay right now, so staying at home lets me feel how I feel, protects me from anything that might make it worse, and protects others from having to see me like this, acting how I actually feel. πŸ₯Ί My “game face” is out of order. (I haven’t even been on Facebook for days and days, and the last time was to just let everyone know I was okay. I really hate how this has been affecting my interactions (or lack thereof) with friends and family.)

And I don’t blame people for being concerned, or not knowing how to react, when the topic is cancer and there’s still more “unknown” than “you’ll be fine” at the moment. But this current craptacular phase of “bleh” isn’t (likely) caused by anything cancer related, but is actually due to not being able to take the thyroid meds that I need. But to everyone else, I’m sure it looks and feels as if cancer is kicking my ass, which leads to all sorts of difficult and crappy emotions.

Toni and Shannon invited me out for a bonfire last night, and in my heart I wanted to go… but I wouldn’t have been able to conceal how I felt, physically or mentally, and I honestly didn’t want to be a buzzkill on their evening – which is what I likely would have been. πŸ˜’ If it turns out that the doctors weren’t able to remove all of the cancer, or if it has spread or changed or anything… that’s when I’d be more willing to let people feel bad for me, to treat me differently, etc. I do feel like hell right now, but I would feel like it would come across as “crying wolf” – since even though I know why I’m sick, that’s not how everyone else is gonna see it. I reassure people that I’ll let them know if there comes a time when they truly shouldΒ be concerned or worried for me, so I hope they know I mean that.

Meh… anyway… see what I mean about my mood? The same way I ramble about it on here now and then, I just didn’t wanna end up doing that to them last night. (Or to anyone, really…) Instead, thanks to Shannon texting me again this morning to let me know, they all had a good evening. Sharing lots of happy memories and stories about Mom, while still commenting on how it doesn’t seem real, how it doesn’t seem fair, and how as we all get older – how it’s getting harder to escape all of this type of bleh. Having me there, in my condition, certainly wouldn’t have helped to change that opinion.

But with any luck I’ll get to be one of those surprise cases in the future, where we’ll all be sitting around together, upset at whatever injustices we’re seeing or experiencing, but then someone will be able to say “But hey, you had cancer and you’re still here and fine now… so there’s always hope…” πŸ™‚πŸ€·πŸ»β€β™‚οΈπŸ™πŸ»

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Nerves

As of my last post, I was feeling the then-immediate relief of not having to learn of the plan for my next session of treatment that day. I thought that might make my weekend a little more relaxed, but with each hour closer that Monday gets – the more my nerves started messing with me. 😐 I’m still good, but knowing that tomorrow I’ll be getting the call, it did change what I ended up doing with my weekend.

I’m aware that I could be making a bigger deal out of this than it’s going to end up being, but the alternate is also true… so the best course of action, one that starts me out on better footing before whatever’s next, was to use these two days to get the house nice. πŸ€·πŸ»β€β™‚οΈ I don’t know if it’d be this way for everyone, but if I’m really negatively affected by stopping my thyroid meds (and most everything that I’ve heard so far is that I will be) then it’s important that the house is clean, laundry is done, dishes done up, etc.

It’s simple… feeling shitty feels shitty, but feeling shitty while also being stuck in a dirty house, with unwashed dishes taunting me, baskets of laundry waiting on me… that would just be so much more shitty for me. πŸ˜₯ Like I said, it might not be something that would bother other folks, but it would bother me more than you can even imagine. 😣 One bit of good news, and I’ll give partial credit to the way I’ve tried to keep moving, but I’m finally walking completely without a cane again. πŸ™‚ There’s still some pain, and I can still feel the unpredictable weakness… but it’s good that I’m off the meds I had a bad reaction to, and that I’m getting along much better when it comes to my knee. (Which is surprising, honestly, the way that I pretty much killed it the night that I was in Columbus several days ago.) See, it’s not always bad news around here… 😏

I am disappointed that I wasn’t able to visit a couple people that I had put on the “possibility” list for the weekend if I was feeling alright, but I’m staying hopeful that this next session of treatment will be able to conclusively “clear” me. πŸ‘¨πŸ»β€βš•οΈπŸ₯ΊπŸ™πŸ» Then I can hopefully work at getting my head in a better place again, eventually feeling more like a previous version of me, and potentially more able to make random trips out of the house without the anxiety stopping me before I even make it to the door. πŸ˜‘ As much as I want friends and family to “get me” when it comes to all my twitchy problems, they shouldn’t have to put up with the way that I am as much as they do. 😟 “Clean bill of health” (at least when it comes to my thyroid stuff) could do wonders for snapping me back to something more close to normal. πŸ€•Β That’s the hope anyway…

Me? You Sure About That?

Another big part of my yesterday and the day before was spent trying to help a friend who’s going through some serious shit. 😒 Granted, if you’ve read many of my posts here, you’ll already know that I’ve got plenty of acquaintances, friends, and family that are going through their own personalized flavor of shit at the moment. πŸ˜• Some worse than others, some where I can help, and some where all I can do is just listen, try to understand, and hope and pray for the best. 😟 But man, this person’s state of mind over the past two days… let’s just say that it was very concerning. 😳

(I know this person doesn’t read my blog, nor does anyone that really know this person, so even though I’m sorta putting their business out here… it’s not something that will affect them, and even if they knew, I think they’d actually be okay with me posting about it anonymously like this. They know how I am… how a lot of times, processing my thoughts on the site here is just how I have to do things if I want to attempt to clear my brain of all the clutter…)

I am glad that I have people in my life who feel like I’m the right person to open up to, even when the topic is something as serious as it was… 😬 but I am so not the right person to be able to handle something like that right now. I mean, I did… because I had to… but not without getting completely emotionally drainedΒ (and actually physically ill from the stress of the conversation) and realizing how little I could do about any of their problems. πŸ₯ΊπŸ€’ But despite that, of course I’m glad that they turned to me… even if I was essentially helpless and basically only able to listen and talk things through with them.

The hardest thing about the drawn out text conversation was that as they’d mention this thing, the next thing, the thing after that… I could absolutely understand how the weight of all of those things piling up on them, seemingly all at once, could push them (or anybody, for that matter…) to the point where they’d just be ready to give up. 😒 It’s scary because it’s hard to know if you’re making a difference with what you say, when in the back of your mind, it’s like “Wow, yeah… I get it.”

But at least for now, I feel like our conversations helped. πŸ˜πŸ€·πŸ»β€β™‚οΈ Enough so that I might be able to sleep sometime tonight, and I’m finally able to eat something and keep it down. And I’m not saying that to give anyone any crap. If someone feels like their last resort is reaching out to someone, they do so knowing that it’s not going to be an easy conversation for either side, and that the person they are talking to cares enough about them that they’re going to get pretty messed up by the whole thing as well. πŸ˜• But as stressful as it is to be on the receiving end of that sort of conversation, I just know that I can only pray that someone would be willing to be that person for me if I ever felt like I’d run out of reasons to keep going.

I dunno, I just had to post this. πŸ€” Often times I still feel like people, in general, who know me… they’ve got this mental image of what I’m like, what my days are like, and that it usually falls somewhere between lazy” / “boring” / “uneventful” / “a little stressful” / “what’s he complaining about nowheh 😏 Sometimes I wish that they could spend a couple days in my head… to know how things reallyΒ can be. And as I typed that…Β just now realizing it, that’s probably what all of us want – even the people who feel like everything is crashing down around them… we just want someone to know, to try to understand, to realize that there’s so, so much more going on behind our “game faces” and other people’s assumptions. πŸ™πŸ»

Maybe Nobody Will Notice…

The twitchy snuck up and got me over the past 24 hours. 😟 It’s funny how even being anxious for someone else’s “thing” can cause my brain to act up. My evening meds did zonk me out last night, earlier than anticipated, but I still didn’t sleep through most of the night. I kept waking up every couple of hours, thinking that I slept through my alarms and was gonna be late for Bri’s shower. πŸ˜’Β So, that didn’t help…

But I did get up and make it on time, and I felt about as out of place as I assumed that I would. Dez didn’t make it since she worked the whole night prior, but Bub, Jake, and John were all there… so at least I wasn’t the only d00d there. I dunno… it was fine, Bri was happy, but it was a bunch of people I didn’t know, all the kids running around like tiny crazy people… heh… it just wasn’t for me. In fact, I bailed after an hour. Went outside for a smoke break and my brain was like “Psst… you’re already in your car… you know you could just leave now, right?” 😏 And after messaging Bri to let her know, that’s exactly what I did.

Whatever was wrong with me today, I couldn’t even make myself drive just a couple blocks over to drop off Anna’s birthday card and gift. I just needed to get back home. 😐 Bri understood, and we caught up through messages after everything was done and she seemed happy enough with how things went – and with the goodies that she got. But I know that I’m her person, and sometimes she needs her person… but today wasn’t one of those times, because there was a whole room full of people there just for her. So she didn’t mind that I decided to dip out early. 😌

It’s late in the evening now, but I still haven’t been able to shake this weird mood. I think I’m a bit anxious because I’m behind on some things, and this coming week already has a couple important appointments scheduled, with a couple more calls that I still need to make when I wake up to set up a few more things. I swear though, for someone that’s essentially retired, I sure manage to allow myself to feel a lot of unnecessary pressure sometimes.

Tired of This Shit

I’m not sure how this month’s appointment with the WC doctors is gonna go. πŸ˜• I think I’m actually seeing Dr Walter this time, when it was the new guy that I had the in-depth discussion with about the state of my treatment last month. Regardless, since the WC insurer is coming at me with the shenanigans again, the conversation will have to revolve around that rather than the stuff that I started bringing up last month.

I’ve got to be careful, because it almost feels like a “trap” that WC could use against me, but this month I have to start discussing possible alternatives for the meds that I’m taking right now. Because if they are somehow able to weasel out of paying for what I’m currently taking, the cost of two of those medications would simply be too much for me to continue taking them long term. πŸ™ That’s where the “trap” part comes in.

When I start discussing more affordable potential alternatives for the meds I’m currently taking, I want it to be clear with my doctors and in my records that I have no desire or intention to make any changes now… and that the research and discussion is really just to act as my parachute if I get pushed out of the plane. But I can see where my fear of being forced to pay for my own meds, which has made me research cheaper (but likely less effective) alternatives, means that I nowΒ know that there are cheaper alternatives, so they’ll probably think that they have the right to force me to change to them – despite my preference to keep taking the ones that I’ve been taking. 😏 Heh… I know, that sounds a bit convoluted, but it basically make sense, no?

But until I’m able to discuss this with them, I know that I’m just taking barely-educated shots in the dark when it comes to what might or might not be suitable replacements. 🎯😎 I mean, even though I know that Lyrica has very specific actions – at its most basic level I know that it is considered an anti-seizure / anti-convulsant medication… so that’s where I start looking. πŸ€“πŸ“š And now I have four or five medications that I think could be good replacements… but for all I know, even though they’re anti-seizure, they may have totally different actions – and ones that aren’t even close to being applicable to my situation. πŸ˜’

So for now that’s all I can really do… look for “close” meds and make sure there are more positive side effects than negative. Then I’ll just hope that I’m actually on to something, and that information can be put in my back pocket until it is needed. Between now and then I just have to figure out how to condense all of this crap down into a tolerable three to four minutes. πŸ˜³β±πŸ‘¨πŸ»β€βš•οΈ Gotta impress the importance of this on him, while also not rambling so much that my point gets lost in the noise. I’m better at that than you’d think, actually… it just doesn’t seem that way here because I know I can go on and on about something and it doesn’t matter, since hardly anyone reads this blog anyway. πŸ˜πŸ€·πŸ»β€β™‚οΈ

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.)Β I mean, how many times have I bitched here myself about how nearly every damn monthΒ I have to make multipleΒ 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 theyΒ stillΒ 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.)

Abundance Of Caution

We’re down to about a week-and-a-half before my surgery. 😳 And let me tell you, I’ve been dealing with some serious anxiety issues since the beginning of this past week – and I’m finding it hard to shake. πŸ˜₯ I’m right on the edge, always, and the slightest thing will push me over into labored breathing, chest pains, dizziness, etc. 😟 So while it might make me “difficult” in some people’s minds between now and my surgery, I’ve got to do whatever it takes to keep my anxiety levels low, or at least unchanged if I’m still managing to hang on to being okay.

It’s kind of embarrassing, but I honestly need to keep myself in a mental health bubble for the next 10 days. πŸ˜’ I don’t want anything to happen that will risk me not being able to have the surgery when scheduled, and going to the ER for a panic attack with severe chest pains probably wouldn’t help that cause. πŸ˜• Now, I am gonna tell the doctors and surgeon everything that I’ve experienced up to that point, before I go in, because I absolutely want them to know… but yeah, right now is not the time for me to deal with anything that I don’t absolutely need to deal with.

Cassi helped with that over the past couple of days. πŸ€·πŸ»β€β™‚οΈπŸ˜ I went and got her on Thursday after she got off work, because she had two days off in a row and wanted to spend them here with me. ☺ We never figured out how to make our “couple” relationship work, but boy are we good at being each other’s “person” in times of need. And it’s because neither of us need much… just the distraction from our respective lives that’s somehow provided by just being in each other’s presence.

As for what we did over those two days… there’s really not much to talk about. We just plop down in the living room, turn on Grey’s Anatomy on Netflix, and just sit with each other and watch, talk, eat mac and cheese… heh… just “normal” stuff that doesn’t add to the anxiety. The only times it got a little rough for both of us was when one of the episodes would be about thyroids or cancer and the results. Probably shouldn’t have watched those particular episodes, but it’s also good to think about everything realistically, all of the potential outcomes – and letting myself cry a little bit and be scared with her… it was much better than doing that same thing by myself. πŸ™‚

So yeah, the last couple of days were really nice, and really needed… and today, well, I’m calling it “a day off” since I don’t intend to do much (if any) communicating with anyone, and instead focus on things that I just personally need to do before it’s time for my surgery. 😊 The doctors and surgeon haven’t give me any reason to worry about the surgery. None. But you know how it is… you still wanna kinda get things in order, just to give yourself that peace of mind. And doing that sorta thing makes me feel better… makes me feel productive, which is something I always aim for.

Mood is good… I’m hangin’ in there.