Muh Christmas in words and images :)

Well, it really was a good Christmas this year,  at least for me. I had a lot of fun catching up with family and feasting upon some truly excellent food including my Grandmother’s legendary Baked Crab. My Uncle Ray brought us all wood caddies with six bottles of his home brewed beer as presents. Plus more for us to drink that night.I consider myself to have a fairly discriminating pallette and they were all quite well crafted with a great balance of flavors. I made sure to tell him as much. 

What else? I got a really killer present from my Mom. Here’s what I got:

It’s a really thorough sewing set in a sturdy wood box. And wait until you see the front :

Cool, ja? DAMN STRAIGHT. 

Shannon and I went to my Grandmother’s house and then my Aunt Lisa’s house for Christmas Eve festivities.  Without boring you about everything I got I’ll stick to highlights.  Let’s just say I’m very happy with how this Christmas went. My Grandmother gave me a really cool Irish cookbook,  which I’m excited about exploring. Also got some amazon cards and got ten albums I’ve been burning for.

   After that we came home and exchanged most of our gifts except two and our stockings  (and our dog and two Cat’s stockings). Illustrated here:


Shannon sheepishly handed me my first present and I soon figured out why.  He also got me a (the gayest possible )sewing kit. Check it out :

Pretty much the gayest thing on earth,  methinks.  But whatever Man, I’ve made peace with my feminine side or whatever you wish to call it.  Either way, double the sewing supplies.  Also, I helped a bartender I work with move and she gave me her sewing machine.  I have a mannequin too. I am all hooked up to do mad crazy battle jacket works. 

Speaking of,  I finished patching up the body of the jacket  (still need to put a few more patches on the arms ) and started spiking the dead space.  Here’s where that’s at:

I’m going to tighten up the spiking,  this is just the beginning.  But yeah,  that’s what I did at home on Christmas day,  that and lots of non Christmas music.  

On an unrelated tangent,  here’s one of Shannon’s stocking stuffers: an ornament with his little girl Marci on it:


I also did a Rib roast that my Mom was nice enough to gift us with.  It is absolutely superb. 

Plus, I got to use my kitchen sawzall illustrated here:

All in all,  it’s been a wonderful Christmas and I’m grateful that I got to share it with those I love.  I wasn’t able to do a whole lot of shopping this year but I tried to be as thoughtful as I could achieve. Both my Mom and Grandmother’s cards had long notes in cursive (took a second to work the bugs out as it had been nearly a decade) expressing gratitude and love.  My first attempt at doing one of those awesome cards that touch the soul. 

I sincerely hope you have enjoyed this wee portal into my Christmas adventure.  Now to enjoy a little shopping and tomorrow it’s work work work!

Happy Holidays –

Thom 

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My Christmas Present to myself 

I finally printed and framed my two best Concert Photos,


 On the left: With Harald Oimoen from DRI last December. 

On the right : With George Fisher at a Paths of Possession Show in December of 2005.

It’s not a big present for me, but I like it 🙂

Have yourselves a Happy Holidays!

-Thom

Well Ho, Ho, Ho!

I’m in a pretty pleasant mood right now.  Not long ago I got off the phone with CVS Caremark Specialty Pharmacy.  Seems that my Prior Authorization paperwork  for Humira has been officially approved.  I’ve gotten everything set up with shipping and should have my first shipment Tuesday afternoon. So yeah,  happy dance and whatnot. 

I’m feeling a bit more relaxed about Christmas and my lack of much shopping ability this year. I’m going to do something for the ones I love, it just may be a bit basic. Anyhow,  getting the business with Humira sorted out is a major load off my mind.  I’m trying to STFU, chill and enjoy the season and one of my major stressors is now all good. 

Not much else is happening,  having a bit of inflammation still as I’m only on a starting dose of methotrexate and haven’t gotten to the therapeutic range yet. Doing much better still than I was a few weeks ago.  I’m staying off the prednisone and haven’t had any in two weeks. 

Not much else to report,  except that I may have something up my sleeve writing-wise. 

We shall see. 

Be well –

Thom 

The same old troubled waters 

As much of a handle I’ve gotten on things,  I find a lot of the same issues plaguing me. I’m worried about losing affordable insurance now that the ACA is on the chopping block. I’m not saying I’m a huge fan of obamacare,  but I got the best possible deal out of it personally.  I have a tax credit that allows me to get a silver plan with zero deductible and killer drug coverage. 

It has been the recurring struggle of my life,  staying insured as a person with less than perfect health both physically and mentally.  I have been really nervous lately about what’s going to happen to myself and the ten million or so others who bought coverage through the marketplace. Nothing right away, but Florida is really tight with Medicaid so I’m not sure what I’ll do. 

I’m really scared because joint damage can occur in the early years of RA if left unmedicated.  Aside from squirreling away DMARDS for the gaps there’s not a whole lot I can do. There are patient assistance programs available but all that stuff takes time.

There are other issues recurring but the prospect of losing my insurance is the paramount concern right now.  I need to have some kind of plan to make sure I at least have my psych drugs so I can focus on getting the other meds without losing my head. Fortunately I have at least a few months of backup of my psych drugs because I’m used to shit going bad and I stay vigilant with my crazy. 

That’s all for now. I’m nervous and in pain. C’est la vie. 

Trexin’ along

I’m feeling a bit rough but not terrible considering the fact that I’m T+16 hours from my first weekly dose of methotrexate. I’m trying to stay conscious of how low my dose is, because it could be more harsh as one gets higher in the range.  But yeah,  I’ve been riding it out on the couch and taking it easy. I’ve had some heavy fatigue and mild queasiness but nothing like all the hype I’ve heard surrounding this treatment. Aside from an icky sweaty night I feel mostly alright.

Part of this was a strategy on my Doctor’s part. He resubmitted my Humira prescription after I  added Arava and Plaquenil to my list of failed drugs. The main reason it was initially denied was the lack of having tried other things. I’m hoping the nice people at Prime Therapeutics see it his way this time. Everything I’ve read says that the most effective combination for fighting RA is a synthetic DMARD plus a biologic. 

Anyhow,  I’m happy to say that at least for now the big bad methotrexate isn’t such a big deal.  This may change,  but it’s totally workable for the time being. As long as I stay diligent with the folic acid the side effects should be relatively mild. Really,  it’s nothing a bit of medicinal THC can’t handle. Hopefully now I can stay the hell off the damned steroids for a while. They take care of the swelling very well but cause trouble of their own. 

I’m done with Facebook permanently,  of this I am certain.  However I still use one social media network,  albeit a much smaller one than FB or Twitter and what have you. It’s called MyRATeam. The social network for people with Rheumatoid Arthritis.  I’m not as active as some but I find it an excellent resource for information about treatment options as well as a fun place to interact with others. All I was really doing on Facebook was messing around in groups pertaining to my health issues anyway. I just decided to cut the excess bullshit away and keep what I wanted. Between here (WordPress ) and myrateam.com my itch to socialize online it pretty well covered.

So in all, I’m feeling quite optimistic about the current course of action and looking fondly to the future. In an hour or so I’ll be doing breakfast with my darling Lover and there’s no telling what the day holds in store. 

That’s all for now. 

-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