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 

The same old troubled waters 

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 🙂

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 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

Going Dark

I’ve decided that I need to for an extended period of time.  At least in the context of social media. Lately I’ve been really depressed and going on Facebook seems to amplify it terribly. I’m thinking lately that I need to simplify my life a bit.  I’ve determined that this rapid fire data stream of weird Internet crap is fundamentally unhealthy.  It literally assaults the senses. More than anything else I wish to break away and have my own existence full of the things that I want to occupy myself with.  

 Honestly,  Facebook just runs me through the wringer emotionally. I’m tired of all the political garbage and the strange memes and I just want to get back to socializing the old-fashioned way. I want to reestablish some distance between me and the people I know and spend my spare time with my family and doing my little hobbies.

I realize that not everyone is as happy or awesome as they may present themselves online. I’m just sick of constantly being all up in people’s business.  I don’t need a steady play by play for hundreds of people at once. My grey matter yearns for a break. 

If anyone wishes to keep up, here’s my email :

Theallisinall@gmail.com 

-Thom

On solitude 

I spend a great deal of time in my own company in my own head. I’m usually pretty good at amusing myself and I’m not an intensely social person.  That’s not to say that I dislike or avoid other people,  merely that I’m socially selective.  Perhaps eugenic is a superior term here. I try to devote my time to the relationships that I consider worth cultivating and frequently don’t hang on to casual friends.  However,  the friendships I’ve maintained are deeply meaningful. 

As a person who struggles with depression,  I have very mixed feelings about my ‘me time’, personal space or whatever the hell one chooses to call it.  I require a certain amount of solitude to have time to reflect and ponder my existence.  But my alone time can also be highly seductive,  like a warm bath that I drown myself in. I find that there certainly is such a thing as too much personal space.  It’s like the deeper I retreat into my head the more it becomes a living tomb insulating me from the utter rot of the modern world.

I must admit that I’m being a bit slanted here. I’m in a wonderful committed relationship with the most dashing and handsome gent on Earth. He’s so good to me it absolutely floors me and I’m grateful to whatever Gods may be for him. He makes me laugh and glow like no other.

Still, it’s hard for us with our schedules being what they are. He works overnight so he’s usually asleep when I’m up doing stuff.  We make as much time as we can,  but the situation still wears on me. It’s frustrating to have to spend so much time by myself.  More so lately as I’ve been under some intense financial pressure. 

I love my friends.  I miss them too. Lately life has just been getting in the way. It seems like nothing ever lines up any more time wise. I guess that’s part of growing up,  a certain amount of drifting that is to say. Still, if it’s important you make the time and I’m grateful for the time we have. 

That aside, I’m in kind of bad shape of late.  I’m highly stressed and broke all the time but that’s nothing new. I frequently ask myself how I ever let my life become such a mess. My lack of success frequently finds me entertaining highly morbid self-destructive thoughts. I don’t do that kind of stuff but sometimes I just feel like my life has no value and I want to disappear. It’s something that I’m trying my best to deal with constructively.  I try to keep myself together mostly out of being sick of being a burden on my family.  

I don’t want to hurt anyone,  I just don’t want to hurt the way I so frequently do.  It fucking sucks and I don’t want to do it. This is what a few hours at home by myself does to my mental state. Nothing to do but sit around and withstand the cyclone of dysphoria.

I’m relatively calm, but things seem beyond impossible. Sleep is my only escape from this. I’m not making enough money fast enough.  My head is under so much pressure I want to scream with feral rage.

What was the point I was making?  I’m not sure.  I’m holding but carrying a deep sadness within me every day.  Such is life. It hasn’t killed me yet, though I take little pride in survival.  

Meh.

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.

When all things are considered…

I’m strangely content of late. It’s actually rather nice. I’m keeping up with my obligations and looking forward to my vacation in Alaska  next week. As for my health,  it’s pretty solid. I’m seeming to get some ADHD coverage from the Wellbutrin I was prescribed for depression,  so that’s a plus I’d say. I’m not sure what my current status is diagnosis-wise. If it is Rheumatoid Arthritis it’s the Seronegative type, as the blood work doesn’t really support this as SED rate, Rheumatoid Factor and C-reactive Protein are in the  normal range . I have to see a Dermatologist to get a biopsy on one of my nodules. If there are palisading lymphocytes then they are rheumatoid nodules, according to the Rheumatologist. At any rate,  I’m not particularly swollen or inflamed right now,  at least not badly. 

    It’s very strange the way my pain and fatigue wax and wane. Most days I feel relatively strong and capable.  But some days I flare up and come home feeling like I’ve been beaten by a golf club. As for fatigue,  I’m a fairly crazy coffee drinker, but when it hits, no amount of caffeine will move me. I had a day or two that I slept way too much and pretty much felt drunk and disoriented no matter what I did to kick myself into gear. My fatigue and stiffness have mostly been sparing me lately, for which I am grateful.  When the fatigue does hit nothing can touch it. 

    So if not RA, then what? My Mom came with me to my last appointment with the Rheumatologist.  At one point she looked confused and said  ‘So does he have RA or not?’. He said, ‘I’d bet my car on it but I’m not ready to bet my house.’. Which I presume is doctor-speak for I dunno. We shall see I guess.  My flares are erratic and won’t bother me for a decent amount of time in between.  I can’t really figure out what aggravates it. I had lots of swollen joints when I first saw my current doctor. That plus nodules which I still have on many knuckles. Also the xrays revealed some erosion.  The prednisone helped a lot but steroids are not for long term use. Anyhow,  the crucial thing is I’m alright and not feeling sick or sore right now.  

    On the Metal front life is good. Last show was a bit of a mixed bag.  Great bands but too much Metalcore filler.  Got to see Brazilian Death Metal Juggernaut Krisiun as well as Nile, Cannibal Corpse,  Revocation and SUFFOCATION SHOULD HAVE BEEN THERE DAMNIT! I GOT ROBBED DAMNIT! Oh well.  It’s just that they are the primary reason I went to that show. I was sorely disappointed.  Seeing Master in a month and DRI in December.  Hoping to get my copy of Harald Oimoen’s book signed! Metal Nerd for Life.  Aside from that,  just doing my thing. Finally decided to quit shaving my head too. Ha!