I’m still here and stuff is happening!

It’s been a rough few months and I’ve been kind of in the weeds mentally. I’m doing my best to keep my moods in check and deescalate them when necessary. So then, I have a lot to tell you about which I will attempt to keep as concise as possible.

My RA is under control and I’m doing fairly well in the that regard. Relatively low pain and inflammation as well as minimum fatigue. Xeljanz plus the Trex seems to be the magic bullet. I still have some troublesome days but overall doing quite well.

Shannon’s Mother just left town after staying with us for about a month. She would have been on her way sooner but her health issues complicated her plans and she stayed a little longer. It was a pleasure to have her and she helped us fix up many things around the house. That said we’re happy to have our privacy and whatnot back.

I’m hopefully scraping enough $ together soon for a trip to Alaska in the summer. Shannon is directing a Shakespeare show and wants me to join the fun. I’m really nervous about acting and he’s pushing me because he knows that I kind of have a complex I need to break. Should be good fun.

Aside from that I’ve been doing some really heavy duty introspection lately. Halloween, as much fun as it was brought some things to the front of my mind that I have repressed the hell out of since… Honestly since I was a kid but very much so in the last twelve years or so of my life. I’ve honestly never been particularly comfortable with being male. I know this may come as a shock to some but it’s honestly how I’ve felt most of my life. When I present as a woman I feel at peace and whole. I feel comfortable in my own skin and right.

Some folks seem puzzled by this, but I’m not particularly masculine. I was the sensitive scrawny kid who always got picked on. I never told anyone until years later, but when I was a kid going into my teens I used to try on my mom’s clothes when she was shopping or at work. I wasn’t sure why, I just knew it made me feel nice and pretty. I didn’t think much of it initially but when I had my first girlfriend (before I figured out i was more into Men) she used to get so pissed at me for stretching out her Clothes. Anyway, being Harley Quinn for a day brought all this stuff back to the surface and well, I don’t think I’m a drag queen and i don’t think it’s a phase or fetish. I think I’m transgender and after first realizing at the age of twenty two I’ve finally admitted it to myself nearly thirteen years later. Just every time I’ve dressed like a girl I’ve quietly wished I could do it full time. I mean, If its a phase its a pretty freaking long one 😂

It was no surprise to my best friends. Many friends and my boyfriend have told me I have a feminine brain and they totally saw this coming. Mind you, I realize there’s a whole lot more to being a woman than just dressing like one.

I’m not sure about many things right now but I’m just carefully feeling the situation out. I don’t know to what degree I intend to transition and anything I do will be in baby steps. I know people will bring my mental health into the discussion. I am not delusional or confused. That’s what people said all those years ago…. That i was just being manic. But I’m not manic now and i still feel this way now. I just don’t want to constantly live in a state of hiding out. It’s robbed me of enough of my life force as is.

People who think I’m such an average guy, acting like one has always been a matter of survival. I’m a stage actor. I fake things well, even convincingly at times. But that’s all I feel like I’m doing as a ‘Man’. I’ve always found subtle ways to feminize myself somehow. The world may not see it, but I know 😇

I’m not going to pick apart all the reasons I don’t feel comfortable being a dude. But believe me, there are a great many. I’ve spent a great many nights crying myself to sleep trying to figure out which end is up. I cry a lot sometimes when I look at my body. I hate how muscular I am and how the veins in my arms are all prominent. I have some gender/body dysphoria and I’m tired of having to act like this isn’t happening to me. I know I’m not unattractive, I just don’t enjoy or identify with being a dude. It just hasn’t ever felt like anything but a role I’ve been trapped in.

I feel much lighter already having said what I have. I’ve already hinted at this enough over social media that one night my mom asked me ‘Who’s Lily? (My Tgirl name is Lily Jane, partial homage to Lilith as well as deliberate flower symbolism)’ and I told her. It was really awkward and I don’t even want to think of having this talk with my Dad. But my Mom was awesome in her way. My Boyfriend was the one who first asked me if I was having a trans issue. I totally denied it at the time but a few weeks later I said ‘Yeah, I may have lied about that…’. I was scared. I still am. But my Boyfriend and friends have been so amazing and supportive.

So that’s what I’ve been dealing with. If nothing else I hope it makes for a decent read.

Love,

Lily 💜

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Variability

The holidays notwithstanding things are ever shifting. Time distorts, and it seems like nothing is happening yet everything is somehow different or altered. Some for the better, others not so much.

I’m feeling sad lately and I don’t always have the ability to put it into even the most basic of words or terms. Not all the time, mind you. I actually almost have an idea of where I’m going with this line of thought.

Often I say that I’m X (Sad, Depressed, Morose, or whatever) and ‘I don’t know why’. I’m choosing to point it out because it’s nearly always a misrepresentation of the truth which eventually emerges. Granted there are times when words utterly fail me, but it really doesn’t happen much. Point being that I am almost always blowing smoke when I say things like that.

I’m also feeling quite happy in some respects. I have a lot to be grateful for and I’m fully conscious of this. I mean, there are the usual stressors but my romantic life is unbelievably fulfilling despite my Darling and I being on opposing schedules. I’m excited about Christmas, and seeing my Sister as well as the rest of the family.

I’ve just been shifty lately. It’s the nature of my illness, even when it’s well controlled. I’ve been having occasional flashes of intense sadness, sometimes in the middle of talking to someone. Or anxiety. Either way I feel icky as hell almost instantly. It seems to worry people who see me like that. I try to explain that it happens and I just sort of have to let it run its course. Doesn’t usually last that long.

That, of course is the easiest way I can sum up bipolar disorder. It’s not the highs or lows that get you. It’s the back and forth shit that really drives a person berserk.

Any time I’m sick or my joints start flaring up I tend to get weepy and blubbery. Today is one of those days and I’m on the couch with my Pikachu trying to take it easy. I’m hoping the dreaded work bug I seem to have goes easy on me. I don’t want to have to go off my RA meds when I just got things under control.

So yes, I am a bit frustrated and feeling icky at present. But instead of staring at the walls and wandering around in my head I decided to write about it. Did I achieve anything? I suppose that’s purely a matter of perspective. Whatever. It made me feel a bit better, that’s all I really care about right now.

That’s all I have at the moment. Be well and enjoy yet another obnoxious selfie.

-Tommy Boy

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

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.