Exhausting

Nobody really knows what to say or do for someone when one of their loved ones passes, much the same as nobody knows how their brain is going to react to it. Most of my friends and family are doing exactly what I need – checking in on me now and then with a call or text, but basically leaving me alone so I can work it all out. But I’ve also got a couple people who are constantly wanting me to get out of the house and do something, or who are constantly wanting to come over to visit, etc… and even after explaining how much that’s not what I want or need right now, I dunno, I guess they don’t believe me.

They’re trying to make me feel better, when actually they are making me feel like shit – when nearly every day I have to tell someone no… that I don’t want to go out to spend time with them, or no, I don’t want them here spending time with me. It’s simply a matter of needing time, but I know that in at least some way I’m hurting those people’s feelings, making them feel unneeded or unwanted. So I haven’t even really had a chance to reset and regain my bearings since Genesee left, because almost every day I’m reminded how much I’m not okay yet – by wanting to just be away from people and “stuff” for a while – and knowing that each time I do it, I seem ungrateful or whatever.

And again, I know that I’m probably not reacting like most people do, but when I give an explanation you’d hope that would help, you know? But no, so each day that I’m hoping to feel a little bit better – I actually end up feeling worse. It’s that “being a disappointment” trigger that I’ve developed. People want me to be better already, or do the things that they think will make me better, so I feel shitty when I can’t’ be that person that they’re expecting.

And yeah, that’s definitely more their problem than it is mine, but of course I don’t want anyone I care about to misunderstand and feel like it’s personally about them. I don’t want to have to straight up ignore people’s messages, but if I have to I have to… because right now I’m just spinning my wheels, waiting for the first day where I feel like I get some traction, and some people’s “help” definitely isn’t helping.

I’m gonna try to do tomorrow what I was hoping to do today. It’s Saturday, so it’s a weekend day… which technically shouldn’t mean shit to me, as I don’t really have a schedule I have to keep right now… but when I finally fell asleep at 4a this morning (ugh…) it was with the mindset that I wasn’t going to put any pressure on myself, it was the day after I told a friend how much I needed to just be left alone, so I was hoping to put together just one somewhat-normal day that was unaffected by anything or anyone else. But nope… woke up to a message wanting me to go “do something” today, which meant I started my day disappointing someone.

I think that tomorrow I’ve earned the right to just ignore anyone that isn’t respecting what I need, so hopefully I won’t let it weigh on me too much. It’s like fuck… leave me alone, let me start to feel better, let me get back on track, and everything can be fine. Hell, just starting to make a mental list of things that I’ve put on hold, not to mention spring coming up here around the house… yeah, I need to get my shit together.

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The Opposite Of Reassuring

This is the first time I’ve experienced this, probably because I was rarely sick when I was younger, so I don’t think I ever had more than one doctor that I would have regular appointments with… but regarding some of the things with my current condition, I’m getting conflicting diagnosis/treatment advice from two of my doctors. πŸ€”πŸ˜ In more ways than this I’m still a kid, so when I go to a doctor I listen to what they say and take their word as gospel… assuming that they truly know what they’re talking about, and are offering me what is definitely the best diagnosis and treatment plan. πŸ€·πŸ»β€β™‚οΈπŸ‘¨πŸ»β€βš•οΈ But I guess as with almost anything, people often end up with differing opinions. Sometimes differing quite a bit. πŸ˜•

Things have been less than ideal with me for a couple of weeks now, and this week I went back in for a couple of different appointments to discuss it. I tend not to bitch about it unless it’s really bad, but these past few days… on Wednesday I woke up early, took a short nap in the afternoon, and after waking up I wasn’t able to go back to sleep for 30 fucking hours. 😳 Doctor appointment number one wasn’t much fun, going in at the 24 hour point… I mean, I wasn’t even sure I was gonna be able to make it there and back… but at least it wasn’t like when you take your car to the shop so they can fix a rattle, but the rattle doesn’t happen. πŸ˜’ So at least Doc got to see when it can be really bad, and in a way I appreciate when that happens.

I dunno… I’m being kind of vague because I don’t really like talking about it in a lot of ways, so back to the point – I’ve got two doctors who essentially completely disagree with what the other is saying and doing, and I’m not sure exactly what to do with that. 😟 First reaction is to trust and believe that doctor who isn’t saying the scary things, but that may be the doctor who isn’t holding anything back. πŸ€·πŸ»β€β™‚οΈ Then I try to think about “what’s in it” for each of them, and even that doesn’t really help.

But in the next couple of days I’ll have to decide who I want to roll with, and that will decide how potentially fucked up my next few months could end up being. 😐 Gah… I know… vague. I don’t want people to worry.

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

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

Buncha Nothin’

While I’m technically ready to start doing all of the adulting that I’ve got planned for the first couple of weeks of the new year, I am glad that today was essentially a “paused” day… where even if I wanted to, nothing significant could really be accomplished. πŸ€·πŸ»β€β™‚οΈπŸ™‚ I didn’t go out last night, nor did I have any company over, but I still didn’t fall asleep until around 3am. And of course I woke up too damn early, so my brain is thankful that the only real work that I’ll be doing today will be the stuff that I can address by mail. Which leaves all of the phone calls for tomorrow. 😳 Yay. 😟

Last night wasn’t totally lonely though. Brianna also stayed at home, although she was also babysitting for her sisters, so we ended up keeping each other company via messages up until the ball dropped at midnight and then a while after. β˜ΊπŸŽ‰ I think my adulting may be rubbing off on her, because a lot of what we talked about was both of our growing lists of “Shit We Gotta Do” in the next week or two. 😏 I mean, nobody is really a fan of responsibility, but I think it made her feel good (the same way it does me) to spend some of her evening coming up with a game plan of her own. πŸ“’πŸ–ŠπŸ‘§πŸ»

I wish that I didn’t have to take Cassi back home earlier last night, but she did end up staying later than we originally planned. It was a rough, dark, rainy, stressful drive up to Columbus in that horrible weather – with 80% of the traffic still breaking the speed limit, and the other 20% either scared, creeping slowly, or completely stopped along side of the highway as they waited for the rain to stop. β˜πŸŒ§πŸ˜―πŸ˜£πŸ˜§πŸ™ˆβ›ˆπŸŒ§ While she was here though, we started watching a new Korean rom/com/dram called Strong Girl Bong-soon. It’s strange how easily I take to Korean songs and shows now that I’ve been doing it for a bit. πŸ˜πŸ‡°πŸ‡·

But yeah… this is kind of a rambling post since it’s been a leisurely kind of day for the most part. All of my upcoming doctor appointments are still heavy in my mind though… I’m just trying to not let them bother me today. 😟 I will say this though. I haven’t been feeling great for the past couple of weeks. 😐 Not awful, but not how I normally feel either. So while I’m not gonna try to predict anything when it comes to my upcoming tests, I think I’m subconsciously getting myself ready for some potentially bad news. πŸ€·πŸ»β€β™‚οΈ

It doesn’t help that I’ve been having a lot of anxiety filled dreams lately as well. 😳 Not exactly nightmares, but dreams that definitely had a negative feel. And twice now I’ve had dreams where I died. πŸ˜• One was strange… I had already passed away, but I was still around to console people and to help with all of the arrangements needed in that sort of circumstance. 😬 But the bad dreams, the specific “not feeling well” things… right now I am choosing to attribute it all to the Wellbutrin that one of my docs put me on. πŸ€’

I haven’t felt this mentally and physically shitty in a long while. πŸ˜” And it’s so much so that I’m going to stop taking that new med until my next appointment with that doctor, so I can let him know the side effects that I’ve been experiencing. Over the years I’ve probably tried half-a-dozen different meds to help with depression or anxiety, and never have I made it past a month or two before the side effects outweighed the potential benefits – and I’m pretty sure this one will be the same way. 🀨 I’ve also got something more immediate for anxiety, but I haven’t noticed any bad side effects from that one, so perhaps I’ll be able to keep one-out-of-two in my rotation this time.

Alrighty then… time for some football. πŸ™‚πŸˆ Ready to push the scary thoughts to the back again for now.

Grumble

I had Bri around for a few days. I hadn’t been able to spend much time with her since Christina passed, partly due to schedules, partly due to my radiation stuff still going on… but yeah, the last few days have been nice with her around. I don’t need to entertain her, there was plenty of Netflix, Plex, and YouTube, and we were both probably more productive with whatever stuff we needed to work on than had we not been each other’s company. πŸ€·πŸ»β€β™‚οΈπŸ™‚

Had to wake up before the sun rose this morning, to make sure I’d make it to my 8-o-fucking-clock doctor appointment, and I’m still in a shit mood about it. 😠 I’ve never been excited about any type of mental health care… heh… and I suppose it shows sometimes, but yeah, this was my first real session with a shrink shrink, and getting medications that he thinks will help me be less twitchy. Meh… I’m trying to not even think about it much right now and I’m gonna just see how it goes.

I can’t be bothered with all that stuff right now though because, yet again, I’m doing the monthly fight to get my workers comp medications. 🀬 You know, the same medication that I’m apparently being accused of not getting filled and not picking up like I should. Is that what they’re trying to use against me? That they force me to completely run out and sometimes have to wait days before the next prescription is finally approved? Are they holding that “delay” against me? Yeah, I don’t feel like talking about that right now. πŸ˜’

I swear though, next month’s calendar is already peppered with doctor and other appointments. Half of them are actually still related to the thyroid cancer treatment, but now there’s PCP appt, workers comp doc appt, thyroid stuff, talky shrink, pill shrink… bleh… it’s making me tired just looking at it. Gonna try to continue to make some changes at my next WC appointment as well, which might not go easily… I’m just tired of going to a pain management place while still being in pain each day. πŸ˜– Something obviously isn’t working quite right and I deserve to have it changed in order to improve my treatment and my condition.

Yeah… already done with today, man…

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.)