Of mischief and fragility

Been on a bit of an odd trip the last few months. Or is it just that sort of life? Meh, probably. At least I’m mostly having fun. So allow me to break down what’s happening on my planet.

1. Excited about Halloween in a couple days. Going to work and a party that night dressed as Suicide Squad’s Harley Quinn. It’s simply too epic a trolling to pass up. My inner Loki simply has a raging boner for this one. I know, sometimes I’m just totes eloquent.

2. My RA has been resurfacing after a long period of being in very little pain. Not sure if it’s the weather or what but I’m back on the prednisone and not thrilled about it. Tapering down because most predictably the stuff always turns me into a wreck mentally. Calming down a bit but worried I’m going to flare like hell as soon as the steroid is gone. Hoping this doesn’t mess with my Halloween Fun.

3. I’m still having lots of fun rediscovering my boyish inner self and watching lots of cartoons and spending lots of time outside. Trying to spend more time laughing because it makes difficult and trying times so much more bearable. Getting ready to chill with my Pikachu and some gummi worms and watch something cute.

4. Mentally, as usual I’m a highly mixed bag. I’m honestly well aware of my varying degrees of madness. I have my craziness fairly well deconstructed. It’s just that awareness does not automatically equal results. I’ve done a lot of work on myself the past few years to just be more open with other people and laid back and peaceful. Yes, Crazy Thom wants inner peace. I know, it’s wacky, right? In all seriousness though I’m still tearing away context/details/shit that I don’t need from my brain on a daily basis and tossing it in the incinerator.

5. I’ve come to realize that most people do the bulk of their suffering privately. I’m trying to keep in perspective the fact that everyone could be in the midst of a raging battle that i know nothing about.

That’s about all i have for now except…..

A Halloween teaser photo:

Have fun and be safe this Halloween!

-Tommy Boy

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Taking it easy 

I have today off from work as well as tomorrow.  This fortunately coincided perfectly with today being Humira day. I haven’t noticed much in the way of ill effects, outside of one thing. After the first round I woke up the following day feeling REALLY strange. I can’t really describe it beyond that. 

I just got home from about a two and a half hour bus trek to acquire this week’s Humira Pen from the Rheumatologist’s fridge.  Did my shot on the left side of my belly with no trouble.  It did sting a bit,  but that’s only noteworthy because generally speaking I barely feel it. 

I’m feeling some definite relief from my current meds (Arava and Humira ). I’ve not needed prednisone since I was in Alaska.  Since I started the injections I haven’t been taking ibuprofen at all which is great for me, one less thing stressing my liver. I’ve been watching the news about obamacare with some nervous agitation.  My plan appears to be safe for now but my premium is probably going up. I’m glad my plan is as good as it is. It’s so worth it not having an HMO. 

As I mentioned,  I haven’t noticed any real issue with the Humira,  though it could take a long time to really kick in.  I dunno,  I’m pretty resilient when it comes to putting up with medications and side effects as a general rule.  A few meds have really rubbed me the wrong way but most I used without issue. I’m not really worried,  as long as I stay vigilant with blood work I’m all good. 

The thing that concerns me now is avoiding getting sick or infected. The drugs I take for RA are immune suppressants so there is an increased risk for fungal and or opportunistic infections.  I’ve already gotten a flu shot and am going to ask my Doctor about the pneumonia vaccine.  Last year I wasn’t on anything for RA and I got a respiratory infection that lasted six weeks and made me miss my Sister’s wedding.  

Anyhow,  not hurting too badly and enjoying life today. I’m not trying to be paranoid about getting sick, just being realistic and taking precautions. 

Chance favors the prepared mind and all.

Um… back to normal I guess 

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 

Bah

Humira has been officially denied.  Gotta try and fail more old-school DMARDs before they(Florida Blue ) are willing to pay for it.  Which leads to the most likely next options : methotrexate(most likely ) sulfasalazine  (less likely ), plaquenil  (less likely and not used a lot due to messing with vision. 

I’m not surprised,  but whatever… those are the breaks. Methotrexate plus my other med Arava is supposed to be a kickass combination.  It’s just that it’s a chemotherapy drug and pretty much wipes you out the next day but oh freaking well heh heh heh.

I’m just going to have to have a dedicated day off each week to recover from the Trex. That is  if my Doctor uses it. I have no idea what his plan is. It just irks me that the Humira got denied because I was feeling some relief after two injections.  But still, I kind of won because I got a Scot free month of a super expensive medication. 

So, moving on ah s’pose. I had my meds adjusted recently and am feeling better for it.  Bit more of the Wellbutrin and recommendations to follow up with my Psychologist.  Alrighty then.

In my twenties my big problem was Mania and impulsive behavior and all that stereotypical bipolar stuff. I’ve been on a maintenance dose of Risperdal for a few years now and it appears to be holding.  Except for… depression.  That still burns pretty hard. It’s better since I started the Wellbutrin but still somewhat troubling. 

Tonight I’m just kicking back before my work week begins. I leave you now to resume this.
-Thom

Muh composure 

Is honestly pretty strong lately.  I had a period where I was kind of getting sucked into the old blacker than death pit of despair.  It’s not as easy to do as it once was,  but I stay vigilant nonetheless because I fully realize what I’m screwing with. I am really trying to be good to myself here and not let it get away from me again.  

Mentally,  I’m in a pretty excellent place. One of optimism and hope. I’m staying positive and taking decent care of myself as far as staying up on all my meds and eating right. Haven’t eliminated gluten but have significantly cut back on it and I’m pretty sure it’s the reason my belly is tightening up. I do need to start using the elliptical again, it’s pretty much the perfect workout for me. Soon, honest.

Still having a fair amount of swollen joints so my Doctor got me started with Humira injections yesterday.  It’s pretty easy to do and doesn’t hurt much at all,  at least so far. My Doctor has said if the DMARD meds do their thing I should be able to cut out ibuprofen which can spike my blood pressure.  I didn’t really feel any different yesterday after the shot in my thigh. Woke up feeling rather strange the morning after but not particularly sick. Just really weird like.

So yeah,  things are sort of in a state of flux, but for the best methinks.  I’m grateful to be treating my RA with some proper meds and things have been lovely as ever on the home front.  I’m chilling on the couch with my bestie Ms. Roxy at the moment,  as I so frequently do. 

The only thing I find myself worried about now is getting sick. I’ve been warned that if I’m sick on Humira day I should skip it.  Honestly the potential effects for this one are pretty scary but I decided to give it a try because my Doctor said it would be cheaper than methotrexate and most likely have better results.  At least after everything processes with the patient assistance program he signed me up for. If not for this I doubt we would have considered a biologic as they are hideously expensive generally.  As far as the getting sick thing, allow me to clarify. I’m not being a hypochondriac or looking for something to go wrong, I’m just being realistic about the fact of being on two Immunosuppressives.  Aside from paranoid handwashing I’m just going to start packing sani-gel and try to avoid the bus. I see a lot of cycling in my future. Could be a good thing though, in fact I’m sure of it. 
On that note, I feel compelled to mention that my better half and my family are being really awesome and supportive about this whole business.

That’s why it kind of pisses me off when I hear people go on their rants about big pharma or their conspiracy theories about medical science.  I’m not saying that there isn’t profiteering and shit like that going on, not by any stretch. It’s just that there are a lot of good health professionals out there who bust their asses to help their patients. I’m grateful as hell to have an excellent care team. I feel it’s a pretty dick move when people try to tell folks with chronic illnesses that they know better than our physicians.  I grow  tired of people and their belief that there is some organized effort by big pharma to slaughter the population. I have three Physicians who look out for my various health issues and I’m grateful for each of them.

Proper diet, exercise,  probiotics, these are great things that I include as part of my routine.  But early aggressive treatment is how you prevent irreversible joint damage.  I have seen photos of advanced Rheumatoid Arthritis.  I do not feel like taking my chances. I have a dear friend who is trying to convince me that medical science is out to murder me and that a person at a health food store can cure my Rheumatoid Arthritis and Bipolar Disorder with the right combination of herbs and supplements.  I’m not buying it,  to be perfectly frank. I know of a person who was a good friend of my sister who’s acupuncturist convinced him to stop taking his psych drugs.  Two weeks later he blew his brains out with a shotgun. I think I’ll stay on the meds.
Aside from that,  I’m also thoroughly sickened by the election.  Both parties giving me shit for voting Libertarian and assuming that they own my vote. They can both kiss my ass. I don’t want more of the same. I will vote however I damn well please and you can all live with it.  

So yeah,  that’s about where I’m at. I hope you enjoyed my hopelessly disjointed thoughts. 

Cheers.

Sacri-licious

I know it’s not a real word. Stop oppressing me. I’ve been enjoying myself in the kitchen lately and don’t mind bragging a bit.  Yes,  I am a fan of my own cooking. I’m a big believer in comfort food. This morning I woke up with swollen joints in a decent amount of pain.  Took some analgesics and distracted myself from all that noise by making tacos at nine in the morning because I can. It made me feel better,  though that ache is still there. 

I’ve been on Arava for three weeks and am still not noticing any change. I just hope it doesn’t make my blasted hair fall out like it’s known to do. I was thinking the new med was starting to work until yesterday.  I had several pain free days without any NSAIDS and thought I had hit a clearing. Then I started flaring again.  My Rheumatologist has instructed me to be sparing with my bottle of prednisone so I’m not taking any more before I see him next week.  If I still have a lot of swelling when I see him he may add another med, hard to say. I’m back on a steady dose of Tylenol and Motrin for the time being.  

Mentally I’m much calmer today than I have been since returning to Florida. I had an interview for a job by the mall today which I freaking nailed. The beach is a dead scene lately and I had to go where the money is. I can’t live off two days a week,  much as I like my beach job. So, yeah. A bit more relaxed now that I’ve found a new job.  I’m usually pretty good at staying on top of my brain cooties, but the financial anxiety had been wearing hard on me.  

I’m doing fairly well otherwise.  Sometimes I can’t believe how lucky I am.  I wouldn’t have thought of pursuing this particular job if a work friend hadn’t told me to come check the place out.  She also put in a word for me,  I think. I left that place today with a satisfied smirk on my face and a spring in my step. 

It’s nice that some people still remember and practice karma. I do my best to put out mostly positive energy and be a decent person.  My great struggle in this life is not letting experience make me inexorably cynical. I can’t remember who said this but one quote sticks out in my mind: Snark is the modern disease. In so many walks of life it seems like nothing more than a vast sea of smiling back stabbers with no thought process outside the context of petty one-upmanship. At the risk of sounding like a hippie, I’m not letting these types lay waste to my true nature. 

Perhaps I should clarify,  I’m not referring to the concept of a higher self or whatever. I’m talking about the true incontrovertible raw essence of self. The will, if you like. Crowley tells us that every man and woman is a star with a unique and distinctive orbit. The Law of Liberty applies to all,  or it applies to none at all.  Some people absolutely crack their minds trying to wrap them around such a broad and sweeping ethos of tolerance and respect for others. Thou hast no right but to do thy will, save for if such will inhibits the liberty of another.  Thelema is truly the embodiment of the global citizenship notion which has become so popular in recent times. 

Now I pause and rub my knuckles in a contemplative state. As I glance at the time I realize that I’m due for nighttime meds. I’ll try to keep the rest of this post succinct. I’m okay. I was in an icky state for a few weeks but I made it through for now. I’m highly grateful for the quality time with my Boyfriend and our animals that I’ve been awash in of late. These are the things that keep me whole and pure. Which brings me back to the essence of self.  Beyond all the layers of experience,  the infrastructure of interaction with others, and how we see ourselves is the raw entirety of one’s being.  Not physical attributes, nor any shade or filter of presentation may obstruct the indomitable gleam of (for lack of better terminology) the inner light. It is the light which permeates and moves through all objects and things living or not,  that which the ancients rightly viewed as the active living will of God.  

Know thyself, and the rest will follow. I’m not the smartest, best looking or most successful person out there. I’m just a guy who knows who the hell I am. I refuse to let this world dull my glow. 

I’m not really certain what the purpose of this post was, but I’m running with it.

 See if I do not. 

93 

The screws tighten 

I must confess that my stress is getting the best of me right now.  I came back from Alaska to find my schedule at work absolutely slashed.  I’m using this week to update my resume and look around. I’m not sure anything else on the beach is a safe bet. Tourist season is currently flatlining and I’m scrambling like mad to pay my bills on time. I’m already feeling pretty weak from the meds I take and the timing could not be worse. 

I’m trying to stay positive and proactive about this but lately all I want to do is hide out in bed. I am fully aware that this does nothing for me but it sure does look alluring right now.  

It only makes sense.  I had such a great summer that the bubble was bound to pop sooner or later.  Le sigh of exaggerated discontent. I used to be able to find work so easily. Now it takes the right alignment of the stars and maybe a blood sacrifice to so much as get a single response.  
Press on, I must. But I feel like fucking garbage and it just won’t stop.