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

Spring is in the air

Yup, Florida’s ever so brief flirting with cool temperatures is nearly behind us giving way to spring. This will be my second spring break working on Clearwater Beach and I am EXCITED this year. I plan to make some money. The fact that my employer just gave me a killer raise plays into this aspiration well. 

Health wise I’m doing pretty well. My foot is all healed up and my RA meds seem to be doing the job. I’m not having intense pain when I do flare and it’s certainly less frequent with my taking the Methotrexate and Humira. I don’t use steroids much these days and I rarely use my heavy duty ibuprofen.

Anyhow, things are pretty good right now. Work goes well, I’ve managed to catch up with a couple friends recently and I’m just trying to enjoy the time I do get to myself. Playing into that, my listening agenda lately has consisted of The Devil’s Blood, Beherit, Funeral Mist. Samael, Jex Thoth, Jess and the Ancient Ones, Fallen Christ and Sadistic Intent. I’ve also been occasionally working in some moody stuff like a bit of The Golden Palominos and how could I forget that lovely band called Purson? Magnificent band, sultry, trippy and deeply insightful. Just the way I like my Psychedelica.

I don’t do nearly as much reading these days as I would like and this is something that I’m trying to improve my record on. I’m ADHD as all get out. I live to read if it interests me but I have a hard time staying on task and my attention wanders horribly. Currently I’m reading a book about Goddess worship throughout human history as well as the occasional Crowley book. Even if all I read is a chapter now and then I try to keep going.

As ever, with all things. This spring break should be a bit better. A lot of the construction on the beach is donezo. I know what’s wrong with my joints unlike last spring break. The meds seem to be working well and I’m feeling alright about it. As long as I can manage the fatigue I’ll be alright. I just finished eight days straight the day before yesterday. Can’t wait to get that check. 

In the meantime, based on a few suggestions from friends I’m going to give CBD oil a try for my arthritis pain. It got some rave reviews from people I know that had some pretty serious pain to manage. I’m pretty sure Florida will give me a medical marijuana card but God knows how long that’ll take. CBD is already legal in this state and I think it’s worth a shot.

So yes, today finds me facing the near future with optimism and hope. I just have to be careful and listen to my body. I can only do what I can do. 

That goes for you as well. 

93

-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

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 

Levelling out

I’m relieved to say that I’m all good on my bills. Or at least in a far better position.  I fell a bit short of my goal but it was well worth doing. The whole point was to soften the blow from hospital bills and being unemployed for a month, which it did (a profuse thanks to all the amazing people in my life ). I’m healing up quite well too. I saw the Doctor yesterday and she says that if things keep up the way they’ve been doing I should be able to start working again in two weeks.  

It’s been a rough few weeks but as the title implies things are almost back to normal.  I’m almost done with antibiotics and my pain level is virtually nonexistent at this point. 

My dominant mentality is one of gratitude lately. I’m so grateful for everyone’s help which enabled me to focus on getting better without so much of the worrying I’m frequently prone to. 

That’d be it for now. I’m damn fortunate and well aware of it 🙂

Game on!

-Thom