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

Of distance and longing

To say  I’m having a rough time of late would be quite fair. The usual physical and mental troubles plus the fact of my Darling Man being in Alaska for two months. I’m almost two weeks in and my public face is still pretty good, though it has been wearing on me something fierce. I’m going to work, taking care of our Dog and two Cats and just going through the day to day motions. At some point every day when  I’m alone (usually when I get home from work)  I curl up in our bed and start sobbing. It passes quickly enough, but every day without fail since he left.

I’ve been flirting with escapism, wanting to delete this blog, my facebook, my myrateam.com account and I haven’t done so. Why? Because I know it’ll not really accomplish anything outside of worrying people. I realize that a lot of people care about me but when  I get in a depressed state  I just want to shut out everything under and including the Sun. I know that that’s when  I need to reach out and  I’m slowly getting better about this.

Apparently RA can cause or exacerbate depression. I read this and  I’m like ‘Oh joy.’. I have to at this point stress that I am mostly alright, just having a rough go of things. My joint issues have if anything gotten more pronounced in the last year but they haven’t stopped me yet. I am especially fortunate to have discovered myrateam.com , it’s a really good resource for people with RA. It’s nice to have a place where  I can vent among people in the same situation who  can relate and offer insights and or encouragement. 

So yeah, I’m not going anywhere, as this blog is a major stabilizing factor in my life. I’m hanging in there. I’m in the weeds, and  I hurt. Sometimes terribly. I try not to be that flaky person always bitching and moaning about something be it physical or mental. But if this blog was intended for anything it’s precisely this. More than anything it’s for me to help with sorting myself out. I tend to be a person who suffers privately but  I’m trying to get more open with other people about what  I think and feel. Because sometimes people want to help me. What’s more, sometimes I want to let them 😉

I promise to keep doing my best. 93

-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

Plugging away

I had a rough couple weeks there but  I seem to be relatively back to normal. Well, normal for me at least. I did my usual ice, short bursts of prednisone and ibuprofen routine but this flare just didn’t pass. I messaged my Rheumatologist and he was able to squeeze me in the following day(Friday). 

When  I saw the Doctor he examined my joints and said that the Humira had suddenly pooped out on me. The methotrexate was supposed to prevent developing a resistance to the biologic but  I guess the dose wasn’t high enough for that. We talked for a bit and we decided to give Enbrel a try. He had his nurse walk me through my first injection of it as well as give me a steroid injection. I’m glad he threw that in because my wrists loosened up immediately. Two days later  I’m off the prednisone and just taking a bit of Advil. Feeling alright. Much better, actually. 

Sometimes I get concerned about my ability to do my job. It can be pretty physical, but as long as my joint swelling is under control I can totally handle it. That said, I have a really great job with cool people and  I’m hesitant to mess with it. I know this will sound ridiculous but- I’ve worked at lots of places that are like a big family. Crabby’s is the first place I’ve worked where  I actually felt like part of said family.

What else can  I tell  you about, whoever you may be? Shannon is going to Alaska for a lead role in a Shakespeare production. Very happy for him. I badly wanted to go but it makes sense for me to hold down the fort, care for the animals and work the summer. One huge development- GOING TO SEE IRON MAIDEN! Taking my buddy Justin to see Iron Maiden in Tampa for his Birthday. I am excited beyond words. My tickets should arrive in the next few days. 

I’ve also become a bit more active on myrateam.com – It’s like Facebook, but for people with Rheumatoid Arthritis. I try to curtail how much  I gripe about health issues on facebook and keep it entertaining. This blog and the aforementioned social network are where  I prefer to spill my guts. 

I usually keep myself together, but sometimes I get bad bouts of depression along with painsomnia. I’m happy to say this has not been a problem since getting my wellbutrin adjusted. Both with my RA and my Mental Issues, I sometimes feel like  I’m too functional to be taken seriously. I mean, I’m pretty physically strong, but  the difficult thing for me is accepting the fact that  I have limits and boundaries. For most of my twenties  I was pretty much unstoppable. Not so much anymore. People are surprised when  I tell them about my health issues. I dunno. I guess all  I’m saying is I’m reasonably strong but  I’m more frail than  I appear. I guess it comes with getting older. 

 On a side note- I got bored and live streamed my last Humira injection. It seemed to amuse a few people so I’m happy with it. The last two days since seeing the doctor have been great. Fruitful days of work, been catching up with dear friends and just plain enjoying myself. Had a lovely lunch Friday at the local Irish Pub with a couple of my Readers and Shannon 😉

That’s about all  I have for now. Alive, content and pressing on. 

Can’t ask for much else, eh?

PS- I saw this photo while  I was browsing google images. I really like it. You never really have any idea what another person is going through. 


Regards-

Thom

Precarious Existence

There’s something to be said for humans and their ability to withstand a constant barrage of soul crushing bullshit. Some folks are like well trained dogs, or perhaps horses. So stubbornly proud of how much they can endure the feeling of the cruel bit in their quivering mouths. I try to not be such a person when possible. 

Granted, I’ve calmed down quite a bit since I was a rage junkie teenager /young adult. But I still have a really hard time with impulse and mood control. Sometimes my brain feels like a car with the gas pedal and the brake being slammed at the same time. The laws of physical science dictate that one or both will eventually give out. That said, I’m a lot better than I used to be. I have SOME degree of control over my emotions and moods. There was a long time where I had zero.and it was not pretty. 

I realize that I have a responsibility to keep my head together and stay out of hospitals or legal trouble. I’m getting better about articulating the things that are ripping through my mind day to day. I don’t go manic. Risperdal prevents that pretty well. But in the last year or two depression and anxiety have been much bigger problems for me than they have been in the past.

I take Wellbutrin for this purpose and it helps. I’ve come to accept the fact that I’m going to have to deal with some breakthrough craziness in the name of not being completely dead inside from being zonked the fuck out on psych drugs. 

I get upset a lot, almost completely at random. I’ve gotten better at identifying my bad states and taking my vistaril (antihistamine used to treat anxiety and panic) when I start freaking out. Still, it’s been rough the last month or so. Being temporarily unemployed didn’t help my mental state any.  On a positive note, its been great to be back at my job. I missed my people 🙂

I don’t know, sometimes it feels like all it takes is a single word or a random breeze to put me in a state of profound sadness. I don’t know if anyone realizes the herculean effort it takes for me to maintain the veneer of relative composure. Some days I just go to pieces regardless. It all depends on a plethora of factors and variables.

I don’t get to see my friends much lately and it’s really been eating at me. Spending entirely too much time in my own head. I don’t have a car and our schedules never line up anymore. I just worry that they think I don’t care. It’s not that at all. I just feel like I’m spread out too thin trying to do too much. 

Still, I’m grateful for the life I have, batshit as I may be. I have a job. I have relative freedom and a Lover who makes all the bullshit worth it. Its so easy to lose sight of the things that really matter. Mental illness has a way of giving one a bit of the old tunnel vision.

This has been one of my less focused posts on this blog. But whatever. I’m thinking this is a decent enough place to wrap it up with a quick run down.

I’m happy to be working again.

I love my Fiancee and my Dog and two Cats.

I’m doing my best.

May it be enough….

-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