The Humiradventure Continues….

I’m still figuring it out as I go. Such is the way with most things.  I’ve received a denial letter, but the specialty pharmacy has already filed an appeal on my behalf.  I’m three injections in and feeling pretty good day to day.  I’ve only taken pain relievers ONCE in the last two weeks.  I’ve noticed a fairly sharp drop in my morning stiffness and have been relatively comfortable of late. I likey the Humira.  

Granted,  some of it could be the Arava starting to do it’s job.  Whatever it is,  I’ll take it. I’ve had a steady decline in the swelling of my joints and my energy level has been much better for the last few weeks.  I can see why so many Rheumatologists extol the virtues of DMARD combination therapy.  The shit freaking works.  I’ve been in much better shape on a daily basis and I’ve been able to get there without ibuprofen OR prednisone.  

So yeah,  that’s about where I’m at.  As confusing as things have been with navigating this strange world of specialty pharmacies,  I’ve been fortunate to have a Nurse from AbbVie in my corner advising me.  She called me yesterday and I gave her the scoop on the latest happenings. She told me to keep up what I’m doing and then she said ‘If your insurance company ends up bringing down the hammer give me a call and we can get the paperwork for another option started’. It’s a very crude paraphrase but the point is that AbbVie has some kind of foundation that may be able to help me. We shall see,  but I’m pretty optimistic about things. 

I must admit I feel pretty fortunate.  I just said to my Boyfriend on the other couch “The best thing about the meds is that I’m not flaring up at work. I can just do my job.”.I’m trying to work smarter lately and reduce the stress in my life.  Getting away from Facebook was a good move. It wasn’t any particular factor aside from it just being too much bullshit for my mind to effectively process.  I don’t check my blog at work. I’ll see it if I get a like or a new subscriber and that’s the extent of my wordpress play at work. My battery lasts a lot longer these days as well.  

All things analyzed, I’m pretty content with how my existence is currently rolling along.  I’m confident that my jacket project will chug along with my hands being in better order. I got some killer patches for it but I’ve barely etched the surface of it’s potential.  Black and white.  Occult Metal and Psychedelic Rock. Thelema. Spikes. It is going to be an outpouring of my feral soul. More on that as it develops. 

Anyhow,  life is capricious and strange as ever. Ride the waves we must!!!

93

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

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.

Finding joy in small victories 

It’s sort of my ethos of late. I try to keep a  certain amount of perspective when life tries to get the better of me. I have love and food and shelter.  There are many things that I could choose to gripe about,  but all of that in itself is huge. Physical and mental health issues are less daunting knowing that you don’t have to do it by yourself.  

I suppose the title of this post may be a bit misleading as the aforementioned things are rather large victories but perhaps this brings us back to the whole perspective thing and how truly crucial it is. The mind (particularly in the bipolar ) has a tendency to lose sight of the bigger picture while magnifying the bullshit.  

I AM struggling right now. I still have to deal with some complex emotional issues day to day as well as occasionally vicious pain in my joints.  I’m at a new job now but it’s going to take a while to get my money back up to par and naturally I’m stressed out. However, this week has been pretty good pain-wise. I flared up a bit after the first Humira injection for about the first day. That said,  I’ve been relatively pain-free since. Could be the Humira,  could be the Arava.  I’m not sure but I’ll take it. 

I’m hoping the insurance approval process goes smoothly and I don’t get mired in some step therapy nonsense.  Allow me to clarify,  it’s when insurance companies won’t let you try Z med until you try and fail W,X and Y first.  Part of it , well most of it is to save the insurer money. I’m hoping to have an answer to my PA request this week.  If Humira is denied I may have to try something more old-school first,  we shall see I guess.  

I used to measure success in how well I was doing financially or what I had “accomplished ” or whatever.  These days I settle for the little things.  I haven’t given up on myself,  just tried to change my attitude about things. 

I have chronic health issues and there will be bad days, to be sure. I’ve just learned to laugh more and treasure the good days. I’m trying to take myself less seriously and give myself a little credit for making it this far. 

Lately I haven’t been waking up with my hands being too stiff to hold my coffee pot. If that does not qualify I’m not sure what does. I’m not losing my grip on reality or going through soul-crushing depression.  Today I got upset and even teary eyed thinking about how futile everything tends to feel. But my Man and I had a deep talk and I felt a lot better for it. I don’t hate myself for not being good enough today. For the moment,  I’m holding.  

When all else fails,  I think of where I’ve been.  I will not go back.