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 πŸ˜‰

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 πŸ˜‰

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 πŸ˜‰

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 πŸ™‚

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 πŸ˜‰ 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 πŸ™‚

-Thom

Adventures in boredomΒ 

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 πŸ™‚ 

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 

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

Promoting and Whoring

Is kinda my MO lately. Amazingly enough,  my Gofundme page netted some decent funds on the first day. Apparently a lot of people care about me, one donation was from an ex who I haven’t seen in over a decade.  So yeah,  happy with it so far but still a long way to the 2000$ goal. Here’s the link again, anything is always profusely appreciated. 

https://www.gofundme.com/help-thom-pay-his-hospital-bills
Regards –

Thom 

More Medical Misadventures of the Humble NarratorΒ 

Well, I done did it again.  This chapter of my chronicles of pain will be recalled as being a particularly bothersome and excruciating time for me. 

‘Yes, Mr. Writer Person,  but what are you getting at?’ I hear you saying.  Allow me to elaborate on the happenings of late. 

It all started off(last monday) like any other week. Took me meds, drank some coffee and went to work.  Something was a bit off from the get go about this day. I usually take my methotrexate on a day I work with no problems.  However,  this time the ‘Trex absolutely wiped me out. I ended up having the other busser take over so I could go home and collapse.  Which I did. It was right at this point I noticed some pain in my big toe.  Didn’t seem like a big deal but it was huge by the next day,  red too. I decided to not wait any longer because I was already having trouble walking. In retrospect taking my methotrexate that day absolutely screwed me. I would never take DMARDS if I knew I had an infection.  I think it really gave the bacteria a foothold. Meh.

So yeah,  I  hobbled to an urgent care Center about a half mile from my house. Got it looked at by a doctor and was put on an antibiotic called Bactrim and sent on my way. At that point I was fairly certain that the situation had been handled.  I could not have been more wrong. I’ll illustrate the why part in due time. 

I started the Bactrim and things seemed to be improving as my pain was steadily going down. I was still having problems with walking but I figured that would work itself out. By the time I was nearly done with my course of antibiotics I was sure that the situation was not rectified. I was getting some evil pain and the swelling was still raging. I used a conveniently situated appointment with my Internist to show him my foot. His jaw pretty much dropped and he was like ‘Go to the Hospital, Thom. Now.’

I called my Mom as I had taken the bus to my doctor and the hospital he wanted me to go to is way the hell in Tampa. She didn’t know about any of this and I feel so terrible about it but I didn’t want her to worry. My Mom worries about Me quite enough. She drove me to the ER and the madcap adventure began.

The time in the ER was pretty unremarkable aside from a one hilarious exception.  The Physicians Assistant drained an abcess and put me on a ton of IV antibiotics.  They were also watching my heart rate which was sky high. I wasn’t surprised when they told me I was being admitted due to the issues that I mentioned.  The exception? 

A Doctor came in my exam room. Said ‘I understand that your blood work says you have some pancreitis, does this hurt?’ As he probed my abdomen.  ‘UMMM, No.’ Was my immediate reaction. He excused himself with a puzzled look on his face.  He had my first name confused with the last name of someone else in the ER. He came back red as a tomato and apologized profusely.  Aside from being a bit unnerving it was funny as all hell πŸ™‚

So I got admitted.Nothing too exciting.  Some friends visited and brought me a lovely THC edible so I managed to sleep that night tethered to an IV pump.  Woke up and had a pretty boring day waiting for a doctor to assess my foot further and finish what was started in the ER. Finally got a Foot Surgeon in and she did not disappoint. The procedure wasn’t too bad but the numbing part literally made me scream and thrash.  Anyhow, the Nice Lady left about thirty minutes ago and I’m just chillin on muh blog currently.  The annoying thing is that I have to do without my RA meds until further notice.  Except prednisone and pain meds, those I can still have.

I’m out of work for I don’t know how long. I’m away from my Husband to be and my Animals.  But damnit, I’m keeping my freaking foot. As usual,  I owe it all to my amazing Mom. I say this because I know she’ll read it,  and were this not the case I would still give due credit.  She’s the absolute Best. 

That seems like as good a note to close on as any πŸ™‚

Cheers-

Thom 

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