Of Thommunism and Recent Happenings

Things are a bit erratic at present. I’ll have a stretch of days where my RA seems to calm down but then I’ll be in agony from a relatively easy day. I’m overall not awful but neither am  I spectacular. I’m two injections in with Enbrel and my joints have been a bit calmer in the last week. Some of that is still riding the wave from that steroid shot, of this I’m sure. 

So what else?.I finally got caught up with my Psychiatrist and had a pretty good meeting with him. I’ve cut back on the wellbutrin which has seemed to bring down the blood pressure a bit, so that’s a plus. The low dose of Risperdal seems to still be doing the trick without zonking me out, which  I’m grateful for.

I’m hoping to do a Thrash Metal themed Vest specifically to sell on eBay or Etsy or something. Relatively safe bands, nothing too outlandish. Something that tastefully screams Glory Days Thrasher. I can do this. Lesser work than mine is selling, why the hell not?

Aside from that, just working and navigating the sea of madness we call the modern world. Doing so reasonably well and maintaining a state of relative contentment. 

May it be so for you. 

-Thom

PS:

My Iron Maiden tickets arrived and  I got muh hair done ๐Ÿ™‚

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 ๐Ÿ˜‰

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 ๐Ÿ™‚

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

Son of the Return of Rheumatologically Speakingย 

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 ๐Ÿ˜‰

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 

The same old troubled watersย 

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. 

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 ๐Ÿ™‚

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

Um… back to normal I guessย 

Back at my old job on the beach.  My brief foray into other employment was lousy and fairly non-lucrative. I’m just lucky I texted my old boss when I did. This kid at my work was my main competitor for bussing shifts and he serves now.  I just happened to come back to my beach job just in time to swiftly grab the lion’s share of the daytime shifts.  Honestly that’s the only reason I left in the first place was that I wasn’t making the money. I had a bit of a hypomanic depressive episode while I was away from the beach and I’m glad to be back up to par.  

I’m not sure what is happening with Humira still save for it being in the appeal stage. I’m going to keep getting sample pens until I get cut off because why not? I’m doing my injection some time tomorrow afternoon and I will see what my Rheumatologist might  know about this in a few weeks. 

My pain level has been relatively low since starting the Humira.  Some flaring up day to day is perfectly normal as my hands are crazy busy all day, but the pain hasn’t been lingering after work much lately. The combination of Arava and Humira is effective enough that I haven’t been taking much else for a while.  

As far as morning stiffness it’s usually fairly brief but intense.  I’m doing alright as far as my hands,  but my feet have been giving me some hell lately.  My metatarsals in both ankles have been pretty sore, especially when I climb stairs or walk uphill.  People think RA is all about the hands but it has effects on the entire body including the feet.

I’m bumming a ride to my Rheumatologist’s office tomorrow from my best friend Matt. I have not seen a whole lot of him lately and am looking forward to catching up with him. Nothing says ‘Let’s Hang out ‘ like picking up a round of injectable biotechnology. Whatever.  I laughed. 

Aside from that,  I’m calm lately.  Calmer than I’ve been in ages. Things are relatively good right now.  I don’t miss Facebook,  that’s for sure.  I no longer care about all the fuss. I have my books,  my music,  my sewing and some freaking peace of mind. Sweet, that.

I have the next two days to do whatever the hell my heart desires. I mean,  I gotta do up my shot but that’s quick and easy.  I think I’m going to surprise my Man with some sort of tasteful dinner. Yes, we eat more than tacos and burritos and quesadillas.  Honest. I’m thinking maybe a really killer stir-fry. I’m doing this. Oh ja.

Until we meet again, 

Thom