Despite a rough September and October, things have somewhat leveled off. I’ve got some breathing room financially and am excited about the holidays. This year Shannon and I are doing our own thanksgiving. My Mom is going to be in Wisconsin visiting my Sister so we will be doing a modest spread. We have one guest joining us, my best friend Matt. He didn’t have anything going on so we are quite happy to have a bit of company. He’s a great guy and we don’t get to hang out as much as we would like. He’s always a good sport about being our plus one. I like to think we’re a reasonably classy gay couple to tag along with. We decided that while we’ll be mostly traditional we are doing Cornish Hens in lieu of a Turkey. It just seems overkill to us three.
So, ja…. that’s one thing. I’m happy with work lately. However my restaurant has been getting hammered the last few days. This is good, of course. It’s just that since the Humira got cut off my hands and wrists have been flaring up again. Not enough to justify taking some prednisone, but still bothersome. I’ve been on Plaquenil about a week and aside from some GI distress I haven’t noticed any change. I probably won’t for a while as its mechanism of action is rather slow to start. It’s just a bit frustrating because I felt great after a few rounds of Humira. C’est la vie. I see the Rheumatologist on Tuesday and may ask about a prescription NSAID. Or perhaps not. I presume that he’ll want to wait and see what the labs say and give the existing stuff time to kick in. This is proving to quite be a test of my patience.
I’m laying on the couch currently enjoying a tripped out favorite in the form of ‘Blood Moon Rise’ by the bewitching Jex Thoth. It’s one of the most spacey and decidedly Pagan sounding albums ever. Great riffs, grinding bass and haunting lyrics. I’m using my dugout at the moment because I’m pretty sore at present. I’m massively pleased that Florida’s Amendment Two passed. No more treating patients like criminals. It’s a new day. The tide has turned.
One more day of work to power through and I have a nice little mini Vacation. I normally work on Tuesday with Monday/Wednesday off. This Tuesday I see the Rheumatologist so I have three days off. Time for some mischief 🙂
Yeah, I say that now. I’m gonna listen to music, read occult books and space the hell out for the better part of three days. It shall be grand. I’m thinking that I should get back into using the elliptical. My weight is pretty good now but I could use a little cardio.
Not much else is up besides acquiring patches and designing a killer jacket 🙂
Anyhow, back to muh relaxation. Thanks for reading.
Humira has been officially cock-blocked until I try and fail some old-school meds first. This is not really a big deal, as I wasn’t the one insisting on Humira in the first place. As of this morning I’m giving Plaquenil a try in addition to Arava which I’ve been on for a few months. I really hope it helps as well as the Humira did. That’s the only real frustration here is that it WAS helping me quite a bit and now I have to start over. Meh, whatevers.
I could have tried to get the drug company to foot the bill but I figured it wouldn’t be that big a deal to jump through a few hoops. Who knows, maybe the old DMARDs will work just fine for me. The annoying thing is that the older meds take a long time to really kick in and start working. I’m having a minor flare a day before I would have been doing a Humira injection. Such is life I suppose.
Time to compose myself, take some meds and go to work. Have a lovely day folks!
I’ve already gotten a lot done on the new kutte. I’m going with an occult Psychedelic and/or Metal feel entirely in black and white. Here’s a photo of where it’s at:
I’ve not done anything on the front yet, but I think the back looks pretty killer so far. The Absu and The Devil’s Blood patches are embroidered whereas the Jex Thoth centerpiece is an old t-shirt that I sliced up and made into a patch of sorts. I’m pleased with what I’ve done to it so far and am excited about the next phase of construction.
I did put a pair of Thelema patches on the shoulders but aside from that all I’ve done is the back. I want to accrue at least twenty patches so I can really play around with some possible layouts. Of course, twenty is just the beginning. My last project was half the surface area and used like fifty-seven patches. This has the potential to be a long and consuming project. Whatevers, I’m in it for the art. I’ve become a bit socially withdrawn lately. Not deliberately, but friends and my schedules just haven’t been lining up recently. This jacket project gives me something to exercise my brain and my hands. I try to take it easy on my hands but I also know a certain amount of work for them improves my overall dexterity. I’m having a far easier time than when I did my vest which is a testament to how much the Humira has improved things for me.
I am really enjoying this project so far. I’ve gotten much quicker with my stitching and far better at undoing thread tangles with the gentle back and forthing of the line. Or whatever, sewing is just something I get by at honestly. My stitches hold, but they aren’t exactly pretty which is why I opted to use black thread this time and mostly hide the stitching.
Anyhow, now I need to go upload this to tshirtslayer.com (Berserker666). Having said that, I wish you all a lovely day.
I’m still figuring it out as I go. Such is the way with most things. I’ve received a denial letter, but the specialty pharmacy has already filed an appeal on my behalf. I’m three injections in and feeling pretty good day to day. I’ve only taken pain relievers ONCE in the last two weeks. I’ve noticed a fairly sharp drop in my morning stiffness and have been relatively comfortable of late. I likey the Humira.
Granted, some of it could be the Arava starting to do it’s job. Whatever it is, I’ll take it. I’ve had a steady decline in the swelling of my joints and my energy level has been much better for the last few weeks. I can see why so many Rheumatologists extol the virtues of DMARD combination therapy. The shit freaking works. I’ve been in much better shape on a daily basis and I’ve been able to get there without ibuprofen OR prednisone.
So yeah, that’s about where I’m at. As confusing as things have been with navigating this strange world of specialty pharmacies, I’ve been fortunate to have a Nurse from AbbVie in my corner advising me. She called me yesterday and I gave her the scoop on the latest happenings. She told me to keep up what I’m doing and then she said ‘If your insurance company ends up bringing down the hammer give me a call and we can get the paperwork for another option started’. It’s a very crude paraphrase but the point is that AbbVie has some kind of foundation that may be able to help me. We shall see, but I’m pretty optimistic about things.
I must admit I feel pretty fortunate. I just said to my Boyfriend on the other couch “The best thing about the meds is that I’m not flaring up at work. I can just do my job.”.I’m trying to work smarter lately and reduce the stress in my life. Getting away from Facebook was a good move. It wasn’t any particular factor aside from it just being too much bullshit for my mind to effectively process. I don’t check my blog at work. I’ll see it if I get a like or a new subscriber and that’s the extent of my wordpress play at work. My battery lasts a lot longer these days as well.
All things analyzed, I’m pretty content with how my existence is currently rolling along. I’m confident that my jacket project will chug along with my hands being in better order. I got some killer patches for it but I’ve barely etched the surface of it’s potential. Black and white. Occult Metal and Psychedelic Rock. Thelema. Spikes. It is going to be an outpouring of my feral soul. More on that as it develops.
Anyhow, life is capricious and strange as ever. Ride the waves we must!!!
Back at my old job on the beach. My brief foray into other employment was lousy and fairly non-lucrative. I’m just lucky I texted my old boss when I did. This kid at my work was my main competitor for bussing shifts and he serves now. I just happened to come back to my beach job just in time to swiftly grab the lion’s share of the daytime shifts. Honestly that’s the only reason I left in the first place was that I wasn’t making the money. I had a bit of a hypomanic depressive episode while I was away from the beach and I’m glad to be back up to par.
I’m not sure what is happening with Humira still save for it being in the appeal stage. I’m going to keep getting sample pens until I get cut off because why not? I’m doing my injection some time tomorrow afternoon and I will see what my Rheumatologist might know about this in a few weeks.
My pain level has been relatively low since starting the Humira. Some flaring up day to day is perfectly normal as my hands are crazy busy all day, but the pain hasn’t been lingering after work much lately. The combination of Arava and Humira is effective enough that I haven’t been taking much else for a while.
As far as morning stiffness it’s usually fairly brief but intense. I’m doing alright as far as my hands, but my feet have been giving me some hell lately. My metatarsals in both ankles have been pretty sore, especially when I climb stairs or walk uphill. People think RA is all about the hands but it has effects on the entire body including the feet.
I’m bumming a ride to my Rheumatologist’s office tomorrow from my best friend Matt. I have not seen a whole lot of him lately and am looking forward to catching up with him. Nothing says ‘Let’s Hang out ‘ like picking up a round of injectable biotechnology. Whatever. I laughed.
Aside from that, I’m calm lately. Calmer than I’ve been in ages. Things are relatively good right now. I don’t miss Facebook, that’s for sure. I no longer care about all the fuss. I have my books, my music, my sewing and some freaking peace of mind. Sweet, that.
I have the next two days to do whatever the hell my heart desires. I mean, I gotta do up my shot but that’s quick and easy. I think I’m going to surprise my Man with some sort of tasteful dinner. Yes, we eat more than tacos and burritos and quesadillas. Honest. I’m thinking maybe a really killer stir-fry. I’m doing this. Oh ja.
Until we meet again,
Humira has been officially denied. Gotta try and fail more old-school DMARDs before they(Florida Blue ) are willing to pay for it. Which leads to the most likely next options : methotrexate(most likely ) sulfasalazine (less likely ), plaquenil (less likely and not used a lot due to messing with vision.
I’m not surprised, but whatever… those are the breaks. Methotrexate plus my other med Arava is supposed to be a kickass combination. It’s just that it’s a chemotherapy drug and pretty much wipes you out the next day but oh freaking well heh heh heh.
I’m just going to have to have a dedicated day off each week to recover from the Trex. That is if my Doctor uses it. I have no idea what his plan is. It just irks me that the Humira got denied because I was feeling some relief after two injections. But still, I kind of won because I got a Scot free month of a super expensive medication.
So, moving on ah s’pose. I had my meds adjusted recently and am feeling better for it. Bit more of the Wellbutrin and recommendations to follow up with my Psychologist. Alrighty then.
In my twenties my big problem was Mania and impulsive behavior and all that stereotypical bipolar stuff. I’ve been on a maintenance dose of Risperdal for a few years now and it appears to be holding. Except for… depression. That still burns pretty hard. It’s better since I started the Wellbutrin but still somewhat troubling.
Tonight I’m just kicking back before my work week begins. I leave you now to resume this.
That’s pretty much the story of the now for Thom. Trying to get a Prior Authorization pushed through before my next injection is due. I’m just hoping that my Rheumatologist has a way with words. Essentially the insurance company is sending him paperwork asking him to explain why it has to be humira and not something else. I’m already on Leflunomide (Arava) and my Doctor doesn’t seem to be much of a fan of the old school DMARD drugs. My big worry is that the Insurance is going to dictate that I have to try and fail with methotrexate first. Humira and biologics in general are a bit scary with the potential side effects but I’m not really hot on the idea of using chemo drugs, regardless of dose level.
That said, things are going reasonably well. It’s kind of crunch time getting the next Humira Pens by my dose date but I have some help with navigating this process. AbbVie (company that makes Humira ) sent a Nurse Ambassador to my house today to walk me through getting insurance stuff pushed through and getting the Patient Assistance program rolling. I’m already confident that I have the subcutaneous injection thing down but she will be coming by again next week when this is hopefully sorted to make sure. I’ve never used a specialty pharmacy or anything before so having this lady around is pretty helpful. If the insurance people drag ass I may have to see about getting a sample pen for my dose next week.
I just hope this doesn’t end up being fruitless. I’m not crazy about the idea of trying a bunch of ancient meds before they let my Doctor freaking use what he wants.
Insurance is a special kind of fuckery, eh?