Muh Summer

It’s right around the corner. The humidity is spiking in grand Florida fashion as I prepare myself to go see Iron Maiden in June. That along with turning thirty-five are the main points of interest so far. 

On the home front I’m bracing myself for two lonely months without my Lover Man. He got a lead in a Play in Alaska. I would have liked to join him but  I simply couldn’t scrape together the funds. Also, I feel like it’ll be best for our animals having one of us here.

Rheumatologically the battle continues unabated. In spite of a year of various meds my Vectra DA score (Disease Activity) more than doubled since last year when  I was first diagnosed with RA. I’m trying to remind myself that this number doesn’t reflect the increase in my methotrexate which I’m sure is helping. 

Sometimes I’ll have a few days straight of my joints being relatively calm and painless. It’s easy to underestimate how capricious and erratic my body can be. I’ll start feeling strong and cocky but the swelling always returns and slaps me back into my place. Still, overall I think I’m showing some recent improvement and am optimistic that incorporating a gluten and sugar free diet will give me even more edge. My first diet attempt crashed and burned but  I plan to give it another go while my Man is in AK.

So yeah, the summer is pretty wide open. I am sure as shit not just being a house ape the whole damn time. I’m gonna miss the living fuck out of Him 😦

That’s about all for now. I find this is a useful protip to give oneself from time to time 😉

Be well-

Thom

Much awake, Very coffee, wow, Such Morning

It’s not quite seven AM in glorious Florida and I’m the first one up as usual. Got ‘Blood Moon Rise’ by Jex Thoth gently wailing from the speakers and a pot of cafe naviera. Good times. Jessica from Jex Thoth is an incredibly compelling singer and songwriter and her various works are among my favorite places to retreat to when I escape the trappings of my existence.  Highly recommend you check them out, along with the first Sabbath Assembly album. 

So, that aside I must declare that its been a pretty good week. I said screw the Superbowl and went and saw Rogue One in IMAX with Shannon and his Mom instead. I must admit, however that I am happy the Patriots won. The butthurt among Patriots haters is deliciously awesome. I’m not a football fan, just a snarky Jerk, really 😉 Anyhow, Rogue One was the major highlight of the week, but read on- there’s more.

I had my appointment at the wound care center yesterday and… My Doctor said that I can go back to work !!! I’ve been going absolutely stir crazy with nothing to do so this is freaking great news. Plus I need money, you know? I’m just massively relieved that all this nonsense is finally almost behind me. I’m back on my methotrexate and Humira which appears to have headed off the icky flare I was certain was beginning. Off the prednisone and even my wrists have been relatively calm the last couple days.

So yeah, just a few more days to kill and I can start making money again. My French press beckons so I believe this is a good stopping point for this post. Hope you all have a lovely and fruitful day 🙂

-Thom

Adventures in boredom 

Or as you might guess,  not so much.  I’ve had more time than I know what to do with lately and I’m going more than a bit crazy with the insane balancing act known as la vie. This is not to say that I’m going four alarm batshit and making prophecies of a great plague or something like THAT.  Just on edge. The Gofundme helped a lot but the business with my foot is taking longer than I would like to heal. It’s made great progress,  it’s just not there yet and I’m frustrated significantly of late. 

The news is not all frustration. I did my blasted taxes today and am getting almost a thousand dollars back this year. That I can live with 🙂 

I’m still worried about a great many things but trying to be *gasp* more flexible at handling the various wild pitches life likes to throw into the mix. If I’ve learned anything from my Occult studies, it’s that a greater degree of self mastery is required to truly grow.

What else can I tell you?  I’m far along with the healing process that the Doctor said that I could go back on Humira and Methotrexate,  both of which I began again on Monday.  Little early to expect any relief,  but I seem to remember that at least the Humira is pretty fast acting so let’s hope. Happy to be off those ibuprofen horse pills which didn’t do jack for my joint pain and spiked my blood pressure. Trying to ease off prednisone,  today is my first day without it but I’ve been keeping the dose quite low. 

Not a whole lot else is really going on.  Shannon’s Mom is staying with us for a few weeks so that should be good fun. Been enjoying lots of bonding time with my animals as well as lots of musical exploration. Particularly with my vinyl. I’m planning to take my Mom up on her offer to teach me to crochet.  That’s about all for now.  

Be well-

Thom 

Son of the Return of Rheumatologically Speaking 

The ol’ Humiradventure has been kind of on the back burner for the last month due to more pressing health issues.  That goes for Trexin as well.  I had to abruptly quit all my RA drugs while I was on antibiotics fighting that icky strep infection in my foot.  I’m glad that I haven’t really flared up a lot but would like to get the hell back on Humira and Methotrexate before my next punishing flare up. I’ve used the prednisone a few times as well as the prescription strength ibuprofen my Rheumatologist gave me to hold me while I was off the other stuff. Hasn’t been that bad, but it always comes out of nowhere so I feel like I’ve sufficiently tested the waters.

Mostly I’ve been okay, but my wrists continue to be my main problem joints as far as pain and swelling.  Sometimes it overlaps with tendonitis which is no fun at all.  A big part of why I’ve been okay is probably because I haven’t been working and getting wiped out every day.  I’m sure that’s on the way 😉

The Doctor who’s taking care of my foot said I should be able to get back on my meds in one more week. I just hope they still work.

I’m still highly concerned about my insurance and the future thereof. All I can do is sit and wait like everyone else.  I talked to my Internist about my worries regarding this when I saw him yesterday. He said that most of my meds are relatively cheap and there are patient assistance programs available from the drug companies for those that are not.  He said I may have to do less appointments for a while but the jist of what he told me is to not panic and do not just give up on my meds.  Insurance or not, I really like all my current Doctors and would like to keep seeing them. 

I just got everything finally straightened out with treating my various physical and mental health problems after several frantic years. I’m not losing it without a fight. 

May your team win-

Thom 

Derpity Derp

I’m almost done with a week that’s been a real mixed bag. Saw the Doctor and made some good progress with things. However,  this was possible because I got called off the first day of my work week.  The following one was a half day due to it being unbelievably dead on the beach.  So my money is not great right now.  I’m confident things will pick up,  just got to be patient.  

One more day on the beach and I hit my weekend.  Talked to my boss about having a dedicated day off for Methotrexate hangover.  I’ll take it Tuesday night and ride out the next day on the couch.  He was cool about it as I very scarcely work on Wednesdays as is. The people I work for are pretty reasonable.  I was hoping to have moved on to something other than hospitality by now but I do have a nice little existence at my beach job. 

I had been  (and still am) a bit nervous about this treatment.  It’s a chemotherapy drug used in low doses to treat RA and as such can be a bit rough.  I finally got more cozy with the idea during my most recent flare. My first real flare, to be honest.  I wasn’t sure the diagnosis was correct until this one. 

I’ve had polyarthritis (multiple swollen joints ) before but it was always relatively mild. Usually I get sore for a day or two,  let it pass or vanquish it with a tiny burst of prednisone.  In the last week or two the pain was a good bit more intense than I was used to.  I started what was supposed to be a tiny round of it and 8 days later I was being seen by the doctor  on the fly still on prednisone and getting two injections in my caboose.  He was going to just run with Humira but I asked him about methotrexate. I didn’t want to replace Arava with nothing. 

Initially he was hesitant to prescribe it as we thought I had rheumatoid nodules on my knuckles but it turns out they are something far less serious. Garrod’s Nodes, also known as knuckle pads.  At least according to the biopsy. I told him that I read that methotrexate can get you better results out of biologics and he said ‘Well this is true, is that what you feel like doing? ‘ I answered in the affirmative and he sent me on my way after my shots.

Point of all this is,  while I pretty much trusted the analysis of my physician it didn’t really feel real until now. Up to this point I thought I was a fairly easy case to handle.  It’s under control but this is all I can keep thinking to myself :

This is more serious business than I realized.  When I was diagnosed I had lots of swollen joints but pain was very mild and I’d have long periods of being relatively asymptomatic so I always quietly wondered if this was really that big a deal.  No longer. 

I’m on the couch relaxing at present.  One more day to power through and I can get my chill on. Until the first dose of methotrexate,  which is looming on the horizon. I really hope it helps.  If you can put up with it it’s the gold standard for RA. 

Soon my darling will arise from his slumber and make me a fabulous dinner. I am excite.  Also, my Electric Wizard patch arrived today! I am really looking forward to posting pics of the jacket as it takes form. Assuming my hands cooperate, that’s always the big unknown. 

So yeah,  a mixed bag. Got a lot done, but my check for this week shall suck and I’m still trying to shake off the last of this flare.. Oh well. Can’t win ’em all. 

I still feel good, and that’s enough for now.  

Au revior,

Thom 

Bah

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.
-Thom