Lily Languishing?

It certainly feels that way at times. Sometimes I really wish I could have started transition when I was 22. Instead of coming out when I first began to bloom I let myself be crushed by social pressures for another thirteen years. Nearly all of that time I was hopelessly bipolar and was hospitalized several times. I still am bipolar, of course. But things have been much more approachable and manageable since I started transitioning socially and ESPECIALLY since I began HRT. Gender Dysphoria nearly crushed Me but getting on Estradiol and Spiro literally saved my life.

I’m still struggling with my employment. It hasn’t been a great season on the beach and my RA was absolutely freaking out(since i had to go off meds for about six weeks!)after I had pneumonia over spring break time. Today is my second Orencia infusion and I’m happy to say things are slowly but surely leveling off and calming down with my joints since I began. No reactions to the infusion and it only takes about half an hour.

As much as I love working on the beach, I’m thinking it may be time to move on. It’s just getting too hard with my joint issues and it’s just not really suiting me well these days. Which actually makes me upset because I love the people I work with and for. But I can’t deny that I’m slowing down from the RA fatigue as well as losing strength from HRT and I’m simply reaching a stage where I need to dial it down a bit and find something a little less erratic.

I don’t mean to sound all melodramatic, really. Things are not THAT bad. But I’m in the weeds pretty hard nonetheless. I’m just not making enough money to pay for all my regular obligations and not one but now two therapists who don’t take my insurance. That in itself is about an extra 175 a month. This is fine when the beach is going well but that’s not the case lately.

I’ve got my sights on something entry level at the local hospital. I think it’s achievable since my employment history is a bit more solid these days and I have a medical card to justify a positive cannabinoids test which for years was the only thing really stopping me. So putting together a resume and applying for a few positions is DEFINITELY on my agenda today.

Speaking of the medical card for a moment:

Saw my awesome Cannabis Physician yesterday morning and had a splendid visit. He is an Internist who doubles as a Cannabis Clinician and a Family Doctor, absolutely wonderful fellow. He hadn’t seen me in six months and was like ‘Wow, you’re getting some amazing results from the HRT!’. Anyhow, he added my recommendation for smokeable flower so I’m happy about that for sure. I just wish insurance would help with some of this stuff. On a side note, both the Doctor and the nice Lady who brings my mail told me I looked gorgeous around 9am yesterday so I was pretty much riding euphorically high on that little cloud all day.

HRT is seriously the best thing I’ve ever done for myself and one of the main reasons I refuse to confirm the question posed by the title of this post. I am not failing. But my blooming process has been extremely long and painstaking. I’m honestly barely even halfway there. The HRT has shown me that I can be comfortable within my own head without needing my mind to be completely drugged into submission with stuff like zyprexa or thorazine. I’m honestly amazed my twenties didn’t kill me. I think of all the pain, anguish, hopelessness, and crushing despair during those years and it truly helps me grasp and appreciate how much better my life is these days.

Hormones take a long time to do their thing but the immediate relief to my wounded psyche from the first few days was absolutely ASTOUNDING to me. There are the obvious effects to be expected like of course breast development (at almost six months in I’m around a B cup) and softening of facial features. Some of the most pleasing personal things I’ve noticed so far include a DRASTIC reduction in my body hair. I was never a very hairy person and I always hated the little bit I got. I’m still pretty dense and bushy in the pubic region as well as the armpits but my chest hair and the hair on my legs have pretty much completely disappeared. I used to get terrible dysphoria from shaving my chest and whatnot so it makes me so happy that I no longer need to. I haven’t shaved my legs in three weeks and the stubs are so much more wispy and less coarse. Even at three weeks of letting it go my legs still look mostly smooth. The only area this hasn’t helped with is facial hair. Still going to have to get that zapped eventually.

The other funny thing is that I’m sort of shrinking. No, not THAT(AT LEAST NOT YET LOL), but height is what I mean. I used to be one inch taller than my Man at Six feet. Now we’re dead even and he’s looking awfully smug ๐Ÿ˜

One thing HRT doesn’t do is help one with vocal troubles. I’m hoping to eventually look in to getting a vocal feminization surgery which is where a small amount of the voice tissues are shaved to alter the pitch. My boyfriend offered to pay after he heard that wouldn’t be able to speak for a month after the fact. He’s a funny Man but I don’t think he’s joking this time๐Ÿ˜„

I was set to do a voice class soon but it got canceled. I was pretty upset about that because vocal dysphoria hits me pretty darn hard sometimes. I look a lot more feminine than I did early on but I feel like my voice really throws people off.

I see my Endocrinologist in a few weeks at which point I am hoping to secure letters for legal name/gender marker change/surgery, get on progesterone to further breast development and aside from that, just trying to stay on target๐Ÿ˜Ž

Not languishing, just fighting like hell the way I do.

More as it develops๐Ÿ’‹

-Lily Jane

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Weird Energy

I can’t think of a more fitting title to my 2019 so far. This is not to say that it’s been an entirely awful time. In many aspects things are beyond excellent. But it’s balanced with things like health issues/chronic pain and strange interpersonal conflicts as well as the world at large collectively tripping from too much junk. Nowadays it’s never entirely clear who’s madness is seeping into where or whom.

As for myself, I’m holding but struggling. Blue Cross still hasn’t approved my Orencia and so I’m getting by with prednisone and NSAIDS. Doing my best and honestly the pain isn’t so bad because I have a medical card but… I want a more long term solution to my RA than freaking steroids!!! Prednisone is terrible stuff and really throws your body out of whack! I was hoping to start my infusions before I leave town this week and now… I don’t even know what the hell is happening *sigh*

Yeah, my Man and myself are going to Orlando to do Disney and Universal. We’re really excited and whatnot but we also both have to be careful not to overdo it during that five days. I just switched from Ritalin back to Adderall XR so I should be getting a few more hours of coverage so that’s certainly a plus with my fatigue being what it currently is. That’s the thing about RA, as well as the emotional aspect of the flaring and pain that REALLY grates on Me. The low dose steroid IS helping me but I’m also a basket case. I started getting hysterical two hours after I took the first dose of prednisone a few days ago. I have to accept trading a week of comparatively good mental health for relative relief*(with a price, of course). It almost always turns out to be a deal I wish I hadn’t made.

All this aside, I’m doing my absolute best to be a friend to myself. For so many years I just tore myself to shreds and just felt like I didn’t deserve to be happy. I still get down on myself sometimes but I snap out of it a lot quicker these days because I have a patient and supportive lover who knows how to talk to me and get me to lighten up or just see things from a different perspective. I mean, that, plus starting HRT before Christmas has taken an unbelievable amount of weight off my soul or essence or whatever your brain chooses to describe your being. I mean, I’m still awkward as hell and I get that a lot of people find me really strange but…. As I’ve slowly found my way through my transition I find myself with an unbelievable amount of love and support. Mostly, that is to say.

There’s still my relationship with my Dad which is….not great at this point but…. I know what he thinks of people like me and I don’t give a damn. My relationship with him has never been particularly strong and and I don’t see it improving. He doesn’t approve of how I live and frankly the feeling is mutual and it hurts but…… Whatever. Can’t please everyone.

But it’s alright. I don’t plan to ๐Ÿค˜

Deadnaming doesn’t happen a lot these days, at least socially and at work. Seems to hit me a lot harder when it does. That and vocal dysphoria are what’s really eating at me lately. I really need to get the name change done by my birthday. I need to find a less physically intense job soon and I’m really sick of giving the ‘explaining the duality of my current existence’ speech to potential employers. I know I need to do it but lately from the steroids all I wanna do is freaking cry and my composure has really been taking a hit.

Electrolysis is also high on the list. Perhaps a tracheal shave as well. This ‘in the middle’ stage is proving to be quite the strange trip. It’s good, though. I’m increasingly figuring out who my real friends are ๐ŸŒท

I got things I need to do (LIKE FIND VOICE LESSONS!!!) now but I’ll have lots of photos and fun Disney stuff soon. Shannon got me some ice packs that wrap around the wrists and I’m gonna make the freaking best of it and enjoy my vacation!!! This dress will hopefully look a lot better after another year or so of estradiol ๐Ÿ˜‚

As ever-

L๐ŸŒท

More adventures in chronic illness and absurdity

Hey y’all. This post finds me in a pretty rough state. That said I figured a blog post would probably be good for me as well as spare my friends a bit of my shitposting histrionics. So where does one begin? Well, most likely from being in a weakened state from my immunosuppression drugs… One of, but not the only scary sides of treating autoimmune disease. I am currently dealing with super happy fun time in the form of pneumonia. I am off work for the week and sitting around the house alternating between Theraflu and cannabis oil and various forms of tea. The first two days were mostly drinking soup and writhing in misery. As you might imagine, neither my bipolar disorder or my rheumatoid arthritis are on break for any of this. I had already quit my Kevzara injections. The last shot was due a bit over two weeks ago and I was already flaring like hell after the previous dose so I decided another shot was pointless. It’s actually really fortunate. If I did that last injection I’m certain the pneumonia I found out about a few days ago would have been way more intense.

As it stands, I thought I had a cold but when it got worse I walked to a clinic by my house and they confirmed what I was pretty sure of. I’m on a Z pack and albuterol. Also using mucinex and a few other things like cough drops and ginger turmeric tea to help with inflammation. The shit thing right now is that I’m on nothing for RA because I’m fighting an infection. My Rheumatologist wants to start me on Orencia IV infusions but obviously I have to get well first. So all I have right now is cannabis tincture, but I AM SO GRATEFUL FOR IT โค

Infusions are a bit frightening to Me. It’s kinda the next level of treatment and… It tells me even without the blood work to verify(which I’ll explain in a moment) that my disease process is advancing. I’m what they refer to as Seronegative. Meaning my Rheumatoid Factor and C-reactive Protein generally look normal(these are the usual markers doctors go by for diagnosis, but NOT ALWAYS). In spite of that my symptoms are observable to the eye and I HAVE had one blood test that actually revealed something. The only one that really ever has- the Vectra DA(disease activity) panel. It measures about a dozen markers and gives you a numerical score which is worse as the number rises. The first year I was diagnosed my score was a relatively low 13. The next year it more than doubled to a 27. still not quite high, but concerning. After that I have no idea, and the reason is that I haven’t had this test in a long time. Because apparently with patients on Kevzara(sarilumab) like me, the results become completely distorted so we couldn’t use it. I’m off it now but I don’t know how long it’ll be until I can Vectra again. I’ll have to ask the Dr. next visit.

Anyhow, the major issue right now is my lungs being all gacked up. I’m steadily noticing the pressure in my head and chest easing off but I’m by no means clear yet. I’m just happy to have my appetite back as I’ve already lost nearly twenty pounds. My Man has been absolutely amazing lately and has been taking the BEST care of Me. I’ve been an emotional wreck lately because my burning fear of my RA becoming disabling seems a lot more plausible these days. Also, it’s the kind of thing where is the disease doesn’t kill me the treatment still could. I sob to myself sometimes when people tell me they think I’m brave or inspiring or whatever. It’s not that I don’t appreciate it or them, really. I just have a really hard time seeing it in myself. Sure, I’m a fighter. I’m not disputing that. But I am far from brave. What I am most of the time is absolutely terrified and freaked out. Sometimes I feel like all my confidence and determination is but a theatrical ruse to please my ego. I’m sorry if this isn’t what anyone wants to hear but….. I’m not giving up. I’m just being real about how afraid I am.

Things are in many ways looking up, in spite of the current happenings. I’ll be doing my legal name change hopefully by my birthday. Also, Iron Maiden comes to Florida on said date. How perfect is that? I have an amazing support network of family and friends. I finally have a medical cannabis card and don’t have to be treated like a criminal anymore. Things could certainly be worse, methinks. It’s just been a series of heavy weeks and I am unbelievably worn out. On a bright note: I finally told off a long time ‘friend’ who had been trying to convince me to stop taking all my meds. Good riddance!

But I’m doing my best to stay positive. I’m doing my best to be there for the ones I love. Most of all I’m doing my best to be gracious for all the love and support I have from my IRL as well as my online families ๐ŸŒท

And in my head I hear the burned out voice of Layne Staley weakly breathe the words…..

‘Something’s gotta turn out right’

Take care, Y’all๐Ÿค˜

-Lily Jane ๐ŸŒท

Adventures in Blooming

Hey there, Dear Readers. Everything went great with the nice Endocrinologist and I have been on Hormone Replacement Therapy for about a week now! It was pretty rough getting to this point but the relief was immense and immediate once I began. I’m still dealing with some difficulties like getting very few hours from my job and struggling to find another one. I had an interview last week that seemed promising but they decided not to hire me. Was a bit bummed about that but in general I have drastically better control over my thoughts and emotions. I feel much calmer than I ever have in my life. Things that used to make me get anxious or crazy no longer agitate me nearly as much. I’m just mellow, level headed, and wishing I did this about fourteen years ago. Better late than never though. I hate begging but I set up a GoFundMe campaign to help me get through the next week or two and my appointments/obligations until hopefully I find a new job or my existing one picks up. Copious amounts of gratitude to my friends who have donated or shared the link๐Ÿ’œ

https://www.gofundme.com/help-lily-stay-afloat-while-she-hunts-for-work

Aside from that I am really excited about doing my 2018 retrospective post as this is the Year of Lily Jane!!! I’m also grateful for the fact that my rheumatoid arthritis is currently very well controlled since I added twice daily Plaquenil to the kevzara injections. I flare a little when it’s cold no matter what but generally speaking I am in very little pain lately.

I had a health scare recently with my Cat which really tore me up emotionally and she’s doing better but I’m watching her carefully because she seems a little sick again today. Just going to have to watch her carefully.

Aside from that just trying to maintain. I’m under pressure but I feel so much more able to deal lately it’s ridiculous. Generally speaking my mental health has been profoundly improved by transitioning. Here’s my tree btw. I can’t wait to see what I look like in a year! ๐Ÿค˜

Wishing you all a Happy and Stress free Holidays,

-Lily Jane๐Ÿ’œ