I’m trying to exercise some patience and be more receptive to change. Part of my therapy is trying to break out of old patterns and identify bad habits. I’m thinking a little extra proofreading is in order for this post as this is my first time using the voice feature to blog. I’m trying to get myself what break I can in my off time. Prednisone is helping with the swelling joints but now I’ve entered night time and the steroid is starting to wear off. Gentle little prickles of pain are becoming gradually more noticeable. I thought of taking the steroid in the afternoon or something but I have to sleep at some point, right?
This voice blogging is kind of weird but not terrible. Actually I rather like it now that I’m starting to get used to it. However punctuation and things like that are a little more Awkward. I’ll go through this later and see what I missed to be sure.
I’m in the process of wrangling myself a sooner appointment with my rheumatologist. I don’t believe the Arava which I’ve taken for several months is doing me any good. My guess is the next thing to try is methotrexate but my doctor may have something else strange up his sleeve. We shall see I guess. I’ll probably start getting some relief soon as I have another Humira shot on Friday. If it’s anything like what it was before I stopped using it I’ll be in good shape.
Work goes well but I’m worried about how long I’ll be able to stand up to the physical nature of my job. I know my inflammation will only get worse as the cold gets more intense. At least that’s how it happened last year. On the other hand I wasn’t on DMARDS last year.
Anyhow, gearing up for Christmas and immediately regretting jumping back to typing this post on my android. Thinking a bath with some Epsom salt is in order. I want off the prednisone but right now I’m thinking that I should keep it up until I get seen again. Pls Pray for Thom.
In spite of pain and stuff it’s been a wonderful day. My man got me strawberry pancakes this morning and the rest of the day was quite pleasant.
I mean it. It’s been a good year despite a couple of rough patches. I saw Napalm Death for the third time, got engaged and visited Alaska! My darling is in the kitchen working on a Thanksgiving feast. I am thankful for my job, the people I know and possibilities yet to be revealed.
I was irked about some trouble with my Christmas tree but it was a blessing in disguise. One of the strings of lights shorted out and I had to basically take everything off the tree and start over. It’s cool though, because Shannon and I got to decorate the tree together and it was a lovely fuzzy bonding experience.
Hurting a bit today but not terribly so. I figured out why my last Humira shot was so freaking painful. I forgot to let it comes to room temperature before I injected it. Yeowch! Won’t forget to do THAT again. I’m off the prednisone today for the first day. So far so good. I’m going to resume relaxing and helping as needed with dinner. Very pleased with how my Sweet Mashed Potatoes turned out. Anyhow, Matt and his lady friend should be here about 7:30 and I am excite.
Happy Thanksgiving folks!
One more day of my work week remains in my way. It’s actually fortunate that it’s been kind of a slow week because I’ve been hurting pretty good lately. I gave myself a round of Humira last night but haven’t started feeling it yet. Tapering down on prednisone starting tomorrow, I hope. It all depends on how I feel tomorrow morning.
I like my job and want the place to make money but I’m so grateful I didn’t have to wrestle with any kegs today. I’m a reasonably strong and fit person, which can be sort of a problem. I tend to get so into doing stuff and adrenaline that I forget that I have an autoimmune disease and need to pace myself a bit. Like with stocking the bar at work, I’ve started taking more trips with lighter loads. I’ve always been about maximum efficiency but I’m just trying to think about the long haul as opposed to the moment. If you don’t give yourself a break no one else will.
I’m at home now, having just finished the third of a four morning stretch on the beach. My feet are sore, my metacarpals are throbbing but I’m on the couch and my mood is pleasant. My Darling is making dinner and I’m enjoying muh blogging.
I’m trying to be patient with the Humira. I’m sure my levels dropped somewhat from missing a round ten days ago. I seem to remember starting to notice an effect within the first week and definitely after the second injection.
The cool thing about this next week is that I’ll have my Mom’s car while she’s visiting my Sister. Looking forward to a date night with my dearest. I have a few more patches in the mail for the jacket project and I hope to get moving on it soon. At least as quickly as my hands will allow. Sewing doesn’t generally give me much pain as long as I don’t overdo it. I’m just ecstatic that I have a project 🙂
So yeah, I’m pretty sore but in a fairly excellent mood. That’ll do. Small victories and all.
My Doctor is apparently a pretty determined fellow. He’s tossed me two more sample pens and has reinitiated the process of getting the med approved by Florida Blue. I guess doctors take it kind of personally when insurance companies tell them what they can and can’t do. I’m just ecstatic that I’m going back on the stuff as it has proven itself more than worthy. My Mom picked up the pens today while I was at work and will be by with them in a few minutes.
After a painful ten days without today is officially Humira day 🙂 Maybe now I can leave alone what’s left of my prednisone reserve for a rainy day. I must dash now as I have to prepare to shoot myself up with some primo biotechnology. Toodles!
Gratefully yours –
I’m fresh from my latest appointment with some cautious optimism. My Doctor basically confirmed what I already knew, that I was getting some swelling and inflammation since Humira was stopped. He seems pretty confident that he can get it pushed through now. We shall see I guess.
He told me not to bother with the Plaquenil, said it was the insurance company’s call, not his. He actually said ‘I didn’t prescribe it because I was sure that it wouldn’t work. ‘. Well then. He said if I’m still hurting when I see him again he’ll switch the Arava with something else but he wants to give it a bit more time to work before he writes it off.
In the meantime, he told me that I can do short bursts of prednisone as needed. He just told me to avoid taking it regularly. Still useful to have in a bad flare.
So let’s recap: Plaquenil is not needed, Arava has a bit more time to prove itself and the well established Humira should be restored within a week if all goes well.
I’m not trying to be a complainy-pants. I’m grateful for the fact that I’m finally being treated, even if there is quite a bit of trial and error. Still taking ibuprofen when I start throbbing, but trying to keep the dose low.
Morning stiffness has been a bigger issue since the Humira got cut off as well. I’m really hoping that it gets processed this time because I was feeling freaking awesome there for a bit and would like to re-capture it.
I’m going to sign off now, but I do so with an air of optimism and hope.
Fare thee well-
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!
This year I only lasted for two days into November to start Christmas decorating. I’m not sure how, but Christmas and whatnot has kind of become a big deal to me. At least a bigger deal than my teen/young adult years.
For a while I was kind of mad during the holidays because I didn’t get why everyone went along with what I thought was a Christian holiday. As I came to learn more about the theft of Pagan traditions (including but not limited to Yule) the more I realized that Christmas is pretty cool, as well as decidedly Pagan.
My Christmas tree is a reflection of me, which is why there are skulls, cartoon characters and lots more. A few angels to keep it on the level 😉 Han Solo, Darth Vader, the Tick, Starscream, Batman and an attractive anime girl as well as a hammerhead shark in there somewhere. Also, yes- that is a DRI patch up there by the lead angel.
Just thought I’d share today’s nerding out.
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!!!