Through dark waters

I suppose that isn’t the most uplifting title, but such are the times and trials of late.  I’m on my feet and still fighting. I’m trying to not just bitch incessantly about things as all that really achieves is getting me MORE worked up. So that said I haven’t had the best of times lately. 
My RA is about as well controlled as I can hope for right now. The methotrexate is rough but pretty good at controlling my symptoms. Since I started this higher dose I’ve almost completely removed prednisone from my daily meds. I’ve done two three day bursts in the last month and a half which is not very much at all so naturally I’m happy about that.  I’m fairly certain that my bussing and barbacking days are nearly over. It’s just too damn much physical strain. I can’t keep up with it like I used to and I’m killing myself trying. Going to give serving a try as well as explore a few other things. 

So yeah, RA is currently alright. Bipolar disorder issues, not so much. I’m not having any mania or anything like that. I just frequently get really sad. Lately my phone just doesn’t ring, no-one comes over and I can’t find anyone to talk to or hang out with me and it’s kind of eating at me. I’m doing my best to be my own best friend here. Having the animals here helps, but I’m still getting pretty stir crazy being by myself all day everyday. 

Not badly depressed. Just frequently sad and lonely and morose. Agitated because I don’t know what to do with myself. I have to figure something out, I’m home alone for another four weeks. 

I got so bored I even set up an Instagram account. That one shocked even me. I don’t have many good pictures but perhaps I can start taking some. It’s just more internet crap to amuse myself with. Whatevers.

I don’t mean to make it sound like things are terrible. I’m just starved for the little things. Someone to hold me together when I fall apart, that sort of thing. I’ve been laying on our sofa a lot because if you lay against the back it kind of feels like someone spooning with you. 

I’m just doing my best to be there for myself and trying to properly maintain. I shouldn’t be counting the days but I totally am, of course. Here’s hoping for a better tomorrow.
Delicately yours,

Thom

Of malaise and persistence…

Things have been rougher than usual the last month. As  I compose this post  I find myself back in a state of relative peace. I’ve only regained my footing in the last five days. The Iron Maiden show gave me a much needed boost as the three weeks leading up to it were pure depressive hell.

I was fine at , say my job. That kept me plenty busy. It’s just the down time that’s been eating at me. I never know what in the hell to do with myself. I mean, I haven’t become a total house ape. I go for a good long bicycle ride fairly regularly and try to get out and do stuff with friends. It is difficult though with so many conflicting schedules and whatnot.

RA-wise  I’m continuing a trend for the better. I’ve been off the steroids for over two weeks and  I’m trying to keep it up. Since the methotrexate was raised I’ve noticed a reduction in  symptoms overall. Which is damn good because taking the stuff is harsh enough that I’d really feel cheated if it weren’t freaking effective. It plus the Enbrel seems like a pretty potent combination.  Last injection was a real Bear though. I think  I went too deep and muscled it. Most painful shot I’ve ever given myself. I started growl-screaming halfway through. My leg was sore at work all day 😦

Between RA and being Bipolar it kind of feels like  I never really get to relax. I mean, I shouldn’t make it sound like  I have it that bad. I’m still strong enough to work and  I’m going to try to make something of myself. If only  I could figure out what. I really have no idea what I’d be good at. Anyhow, the meds are doing me pretty well at present. The steroids were really throwing me off kilter for a while and  I’m happy to be off of them. 

Two days from today will make a month my Lover has been gone. Also, another month until he returns so yay for halfway there.I was hysterically depressed for the first three weeks but Iron Maiden plus time with my friends helped get my ass back among the living. It was an incredible experience. Obviously lots of tracks from The Book of Souls as it’s TBOS tour but also a ton of classics including:

Wrathchild, Children of the Damned, The Trooper, Powerslave, Fear of the Dark, Iron Maiden,  The Number of The Beast, Blood Brothers and Wasted Years.

Lots of fascinating people watching and my Buddy Justin came with me. His ticket was my birthday gift to him and we had an absolute blast. Went to a Killer Pizza place and had a little pre show meal then it was off to The Amalie Arena to see Metal’s Finest. They were top notch and sounded positively amazing. Pure professionals.

So yeah, I’m hanging in there. Got myself some great memories and my Holy Pilgrimage to see my backpatch band is complete. To anyone who may be reading, all I want for my birthday is an Iron Maiden T-shirt or two (available on the official Iron Maiden website)with North American tour dates on the back as  I was too strapped to buy one at the show 😉

Hey, don’t hate me for trying. I’m just a happy crazy person who just achieved a major Bucket List goal 🙂

That’s about all  I have for now except a photo from the Iron Maiden facebook page. My Buddy Justin and  I are in the upper midsection below the right spotlight. 

Until we meet again,

Thom

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

Floored

Truly I am.  The response to my Gofundme page has been amazing.  Since Saturday I’ve gotten three quarters of the way to my goal. It’s really incredible the way friends and family have stepped up to help me through this difficult time.  

I saw the Foot Surgeon Monday and she said I’m looking at about another month of recovery and healing.  I’m chomping at the bit to go back to work but it’ll have to wait a few more weeks while my foot heals up where the abcess was drained.

I’m really touched that so many people thought of me. Even with my insurance this still ended up costing me a pretty penny and I’m overjoyed that I don’t really need to agonize about much outside of getting better.

I’m still off my RA meds while I’m finishing up the antibiotics,  so all I can do about that is ibuprofen and the occasional prednisone.  Even the prednisone I’m being sparing with as it can inhibit healing. Thankfully I haven’t been flaring up too much lately.  That, and my darling Shannon has been so amazing and accommodating throughout this process.  I’ll be alright,  just gotta stay focused and be patient. 

To everyone who donated or shared the link, thank you so very much from the bottom of my heart. 

-Thom

PS: One more share for luck:

https://www.gofundme.com/help-thom-pay-his-hospital-bills?lang=en

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 

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 

Maintenance Day Part Deux

Things changed not ten minutes after I finalized my last blog post.  I had been in a state of frustration trying to get the Doctor’s office on the phone about a sooner appointment.  Noone would answer,  or I would get lost in the phone system ad nauseum.  Long story short,  my luck improved and the phone got answered. 

I was hoping to wrangle something in the next week or two, at the very least we can do better than February,  ja? Indeed.  I was able to get seen TODAY. This absolutely blew my mind,  given how things usually play out. An hour later and I was on the 76 headed to North Clearwater.  

I had to wait a while as it looked like the place was pretty slammed today and understaffed as well.  Wasn’t that long, though.  The doctor came in and actually proceeded to talk to me about Depeche Mode for the first couple minutes as that was the shirt I happened to be wearing.  That said,  he got to the point quickly.  We talked a bit about what the last week or so was like for me.  We agreed that the Arava wasn’t doing jack and could go. He seems pretty confident that Humira will cover most of my needs in time, but went ahead and put me on methotrexate.  The human body has a habit of developing antibodies to biologics.  I mentioned this and he said this is true and should help with this. 

Aside from that,  he had his nurse give me a pair of injections.  A steroid and an Anti-inflammatory.  Already feeling a bit better for it.  In the space of fifteen minutes I accomplished my rheumatological goals for the next few months.  I can actually relax for a while and let the meds do their work. 

Not much else is happening.  Going to work in the morning and hoping all this medical bull gives me some peace. I don’t mean to sound like a bitch. Medical science has done me alright and I have no gripes. 

I mean, I have some. I just don’t feel like they’re worth chasing. 

I’m already feeling a lot better than the last few days leading up to this.  Time to keep the momentum going 🙂

My Darling Man sleeps and I’m letting him sleep. He’s so wonderful it kills me. We’re a couple of chronically ill homos that are hopelessly in love and showing no sign of letting up. It’s so unusual being with someone who actually brings out the best parts of me. 

That’s what love is.  A couple of wounded souls helping one another.  No chains or obligations. Just you and I. Ad infinitum.  

I don’t know where I’m going with this and I don’t give a toss.  I’m content and that’s enough for now. 
Adieu. 

-T