#either that or inject myself 2x in one day.

[pleckthaniel]

I realize this is partly my fault gor not checking but last time I refilled my prescription they gave me syringes too small for my dose and I know for a fact she did it because I ran out of needles "too early" (i used one wrong and had to throw it out. one. so i needed needles 1 (one) week earlier than her computer said i should) and instead of like asking me a question like a normal human being she decided I was doing heroin and I know that because the time before the last time I went she joked about it with the other pharmacist right in front of me and jesus christ i just want to have literally one thing in my life be easy why is that too much to ask

[defilerwyrm]

Hi! I was scrolling through the top surgery tag on tumblr and came across your last post, it's fine if the offer isn't still up btw, but I wanted to ask about your experience with HRT specifically with using gel/cream, and all the surgery stuff too if that's alright! Obviously feel free to share as much or as little as you'd want to, I wouldn't want to make you write a super long thing if it was really taxing lol, I'm just really wanting to do HRT and get top/bottom surgery and hearing lots of different experiences for those things have been helping me a lot. Thank you!

Howdy! Yup, offer’s still valid. I’ll start with HRT.

I was nervous about HRT to start with because I have a phobia of hypodermic syringes and— shit, actually, it’s shot day. BRB.

Okay. I was dreading the idea of having to give myself injections every week. The doctor I was going to gave me a choice: drive halfway across the city and pay $20 to have a nurse do it every week, or get a cream version from a local compounder. I went with the cream because I didn’t have the time or money for the other option, and no needles sounded great.

So I took it every day, and I waited. And I waited. At every appointment the doctor asked me how my changes had been coming along and I had to tell her there’d been none. Just be patient, she kept telling me, it takes time. So I waited. And waited. Almost a year of using the cream daily…zero changes. I told the doc I was getting frustrated with the time table and wanted to switch to cypionate injections, and she reiterated that she wouldn’t allow it unless I came in and paid the copay every week.

Incidentally, when I went to her for a letter to get my name & gender marker changed, she cheerfully agreed, did it on the spot…and did not tell me that she was going to charge $300 for it until I got the bill. Some things clicked into place about her and her practice.

Shortly after the name/GM change, I was forced to move to Houston. I was fed up with her and the cream by then so I found a low-cost clinic that did informed consent HRT. On my very first appointment I learned that the topical versions of testosterone are meant for guys who have already HAD male puberty and just need to keep their levels boosted. I walked out with a prescription for testosterone cypionate, 0.4 mg/week. Three months later my voice started changing and I’d never been so happy to sound ridiculous.

Facial and body hair came in slowly. My forearms and throat were the first places where hairs changed from vellus to terminal. There was one appointment where my prescribing RN asked me how my body hair was coming in. “Slowly,” I said. Two days later I got out of the shower, looked down at my belly, and blurted, “Oh my god, I’m a werewolf.”

My facial hair trailed behind still. I started getting the first hints of sideburns after I think 8 months on cypionate. My beard didn’t extend much past my jawline other than my upper lip and the outer rim of my chin, and that was frustrating, so I did some research and started microneedling my face and using liquid minoxidil (Rogaine) daily. It took a long time but it’s helped a lot, and FINALLY my chin hair connects to my moustache.

IMPORTANT side note on minoxidil: it is VERY, VERY DEADLY TO CATS. If there are cats in your life and you’re using minoxidil to encourage terminal hair growth, you MUST either use a rubber glove you use ONLY for that and keep out of cats’ reach OR wash your hands at least twice before touching any cat, and they CANNOT be allowed to come into contact with the places you applied it for no less than four hours. Used 1-2x daily, minoxidil takes 6-12 months to work, so it’s playing the long game, but once you’ve got the terminal hair you want and you’re still taking HRT, you can safely stop using it.

On that note, not much longer after my belly hair exploded, I started noticing my hairline getting thinner up top. RIP me. Minoxidil can help with this too if it happens to you and you don’t fancy the bald look. Note that when people say guys need to look at their mother’s side to predict male pattern baldness, that only applies to CIS men, because the gene is carried on the X chromosome. Guys like us can get it from either side. In my case, my dad’s. -_-

Behaviorally, testosterone very definitely changed me…for the better. Once I was on cypionate for a bit and my levels were good, I was a hell of a lot calmer. I don’t know how much of that was because I was finally treating my dysphoria and how much was because my hormones were being regulated, but it was a big difference. I haven’t actually seen a difference in my libido because I was a horny bastard to begin with, but it DID give me the confidence to eventually start seeking out sexual partners. YMMV very wildly there.

I do notice that I get sluggish and sleepy at the end of my hormonal cycle. A friend calls it “Cat Piss Sundays,” because we both inject on Mondays so Sunday our T is at its nadir, and we feel, well, like cat piss.

This is already really long so I’m putting the rest under a cut!

Wow, Tumblr just randomly deleted like 7 paragraphs. Holy fuck. Okay, I’ll summarize.

If you ever get pushback from a pharmacy falsely claiming that you don’t have insurance when you do, or that it hasn’t been long enough since your last fill, get on the phone with your insurance and your prescriber and check for two things: A) if your doctor prescribed more than one month without telling you and the pharmacy changed your prescription without telling you, and B) if the pharmacist is a cissexist POS who arbitrarily entered F for sex when your insurance has an M.

I’ll spare you the details, but the combination of those things led to me having to pay out of pocket for T for months, being forced to go without my vital psych meds for months, having a nervous breakdown, losing my job, insurance, and home, and falling into financial ruin, and being dogpiled on Reddit for daring to be frustrated at being lied to and denied my medication. All because pharmacy staff didn’t do what they were told because they thought they knew better and then decided to lie about it.

Since I moved back to Austin at the end of 2019, I’ve been getting my T through Planned Parenthood. For some reason, I actually do get my full 10 weeks of T at a time through Walgreens…which was who I was with originally back in Houston when they filled an Rx for one 10 mL vial (25 weeks) with two half-filled 1 mL vials (4 weeks) and didn’t tell anyone, so I don’t even know what the truth behind that whole fiasco was anymore.

I’m about to have to switch pharmacies and my hackles are all the way up about it. Best of luck to both of us.

TOP SURGERY

I lucked out hard: one of the foremost gender affirmation surgical practices in the world has an office in my city, and at the time I had REALLY good insurance. There was a year-long wait for my top surgery and I had to use that time to get my BMI down, which is effectively like telling Tantalus “why don’t you just grab a snack if you’re so hungry” but I was able to starve myself enough to do it. I know a disturbing number of trans men and trans mascs who’ve had their top surgeries pushed back or outright cancelled out from under them because of BMI. I have Opinions on that. But I got it, anyway.

Because of my weight and the size of my breasts, I had to have a bilateral mastectomy—the kind that results in scars running along the bottom of the pecs. If you’re slender and have small breasts, you can probably have a keyhole incision mastectomy, which only leaves tiny little scars. But if you need bilateral, don’t let the kind of art of trans guys you see on Tumblr & Twitter scare you: these artists almost always GROSSLY inflate the size of the scars. They’re not these huge, wide, jagged things. Mine are like 2 mm wide on the right and 3-4 mm wide on the left (the latter are bigger because of my revision, discussed below).

In order for insurance to pay for this, I was able to use the same letters I’d gotten from two therapists, my psychiatrist, and my HRT doctor that I’d used to get my name/GM change done, because it had been less than one year since they were written.

The best advice I can give you is to prepare for the limitations of your recovery. Get button-down shirts, because t-shirts are just not happening, and wear one when you go in for surgery. Move things you’ll need access to down/up to waist height whenever you can. If you’re the type who can eat leftovers and you won’t have someone to cook for you, make up to two weeks worth of food that you can put in the fridge or freezer and then reheat easily. Stay ahead of the pain, in terms of meds, but if they put you on opioids be careful not to double dose within 4-6 hours. DO NOT try to lift anything more than like 5 lbs for the first two weeks. If you’re lucky like I was, you’ll pretty much sleep for the first 7-14 days and then be fine.

I arrived at the hospital at about 5 AM, and left around 7ish PM that same day.

I lucked out again in that I had family in town who let me stay with them for two weeks and bring my cats over, and my mom stayed up here too for a while to help cook and look after me. I was pretty useless then, barely staying awake long enough to eat, use the toilet, and then take another dose of Vicodin before conking back out. Two weeks later, though, I was fine. Except for this one weird little thing.

I didn’t have drains to deal with, which was great, but on the other hand I developed a seroma that dehisced. Those are technical terms for something that wasn’t painful, but it was disturbing, and it was DISGUSTING: the left half of my chest developed a hole that slowly got wider and constantly leaked large amounts of bright orange fluid. Two months post-op, it was only getting worse, so I went in for a revision. Now I have a weird concave section in my left pec and the nipple on that side is weird because it had to be grafted back on a second time. I could fix the concave part by developing my pec muscles, but who has time (and spoons, and equipment) to work out? Anyway I don’t mind the weirdness much. I could be happier with it, but at least I don’t have dog tags on the sides.

BOTTOM SURGERY, PART 1

I was scheduled to have phalloplasty in December 2018. I needed to lose 50 lbs and have a total hysterectomy before then, but I couldn’t find a trans-friendly surgeon for that in Houston. I lost my job and my insurance in July 2018 and couldn’t find another one that actually paid or had benefits in time, so I had to cancel it. Ironically, by the date I’d had scheduled, I’d lost 70 lbs, mostly due to starvation because I couldn’t afford food. Fun times.

HYSTERECTOMY

Once I moved back to Austin and got a solid job, rescheduled my bottom surgery with Dr Crane; there would be an 18-month wait. I actually I managed to find a trans-friendly OB/GYN & obstetric surgeon in my area who sees a LOT of trans patients. Getting scheduled for the hysto was as easy as telling her I’m trans and scheduled for bottom surgery, plus both my mom and her sister had had ovarian and uterine cancers.

I did NOT need to get new letters for this surgery. I’m pretty sure that my OB/GYN entered the reason for it for insurance purposes as being a cancer prevention thing, which is not at all untrue. I also asked her if there was any way I could see my parts that were being extracted, because part of me just really wanted visual confirmation that they were gone, and she agreed. Dr. J. Mushtaler in Austin is EXCELLENT.

I had to pay a little over $1600 up front for my deductible ($500) & out of pocket costs (80% coinsurance up to $2500/yr); YMMV. Always plan on having to pay a couple hundred dollars more than what your calculations suggest. My insurance was billed I think $16k for this one, but that price can vary wildly.

This one came with an overnight hospital stay. There were two delightful nurses watching over me, gently making fun of how clumsy I was when I woke up basically once an hour every hour to piss like a racehorse. Like 750-800 mL at a time. It was crazy, they were pumping me full of so much fluid and boy did it show. They did that to make sure that I could pee properly: the uterus rests right on top of the bladder, so removing it can sometimes cause issues with urination like incontinence. Two and a half years later I still pee like…I’d guess 8-12 times a day. Then again I also drink 3-5 liters of water a day, so I’m sure that has a lot to do with it too, but even before I really started hydrating well I needed to pee a lot. I asked my mom and one of my BFFs, both of whom had hysterectomies before me, if they‘d found they had to pee all the time afterward, and they said yeah.

At my post-op checkup, Dr Mustaler handed me a glossy printout that showed laproscopic photos of both ovaries before removal and my uterus post-removal. I kinda want to get it framed. I can only describe my liver as “cute”.

Recovery was longer, I think 4 weeks? And I spent most of it sitting in a recliner with an ice back on my belly. I was sore a lot, and I couldn’t move quickly or bend over Or Else, but it wasn’t that bad. I watched (and slept through) A LOT of TV.

About a month later I started having what I can only describe as mild hot flashes, because my estrogen levels basically bottomed out due to the removal of my ovaries. I am pretty sure that these were mild because a) I’ve been on testosterone and b) folks who’ve been through normal menopause AND my non-binary friend who had a hysto but isn’t on T make them sound a lot worse than what I had. They didn’t last long, either in individual duration or in the span of time when I was having them. They were just a mild inconvenience that dropped off after like I think three months.

I swore out loud, at age 6, that I was never having babies. I haven’t reconsidered for a microsecond. The peace of mind that comes from knowing that, not only am I forevermore spared the Hell of menstruation, but I will NEVER, EVER have to worry about an unwanted pregancy.

BOTTOM SURGERY, PART 2

This one…this one has cost me.

The first piece of preparation was laser hair removal. It cost $100/session every 3 months, up until Dr. Crane’s office started offering it at $30/session for their patients so you better believe I switched to them. I needed this because with radial flap phalloplasty, the lower ~half of one forearm gets skinned and used to form the neophallus, along with a length of the radial nerve, and you’re not gonna want a hairy dick. Laser changed my terminal hairs to vellus ones after like two sessions, but it’s growing back, and frankly I wish I’d gotten electrolysis instead because that‘s better at permanently removing hairs. Eventually I’m gonna need laser done on my dick now, sigh. Oh well. But yeah, if you get phalloplasty, start laser or electrolysis at least a year in advance.

I spent most of 2021 worrying my head off that my surgery would get cancelled because I’d gained so much weight back even though Dr. Crane hadn’t given me a BMI goal this time. As phone-averse as I am, it just didn’t occur to me to…you know…call and ask. When I finally did, they said no, they wouldn’t cancel it on me, and a mountain rolled off my shoulders.

However, if you use nicotine products, you DO need to quit as early as you can, because nicotine is a HUGE retardant factor to healing as it restricts blood flow, and after a graft, blood flow is VITAL. You can literally lose your new dick if you smoke or vape etc post-op. Deal with the cravings.

Pre-op, I was told to stop taking T, Vyvanse, and my OTC supplements. What all you get told to stop taking will depend on, well, what you’re taking at the time.

I did have to get new WPATH letters for this surgery, since it’d been more than a year since the originals were written. I got one from my psychiatrist and another I think from Planned Parenthood.

I found out at my pre-op appointment when I went in to pay the $2404 to the hospital, get checked in, etc, that Dr. Crane wanted to use an artificial skin to replace what would be taken from my forearm instead of natural skin from my thigh. Problem was, insurance wouldn’t pay for it and it cost six thousand dollars, which I did not REMOTELY have (in fact I had exactly $2400 in savings and…not much in checking, at the time). I brought it up with him and he was like “No problem, I’ll call the hospital and tell them to cancel that part,” which he did then and there, and that was that. I also got an EKG and learned that my heart is functioning normally, which was GREAT to hear as a 38yo fat guy.

I spent five days in the hospital post-op. I just remember being tired, sore, bored, and always frustrated with the OSAT monitor on my finger, and having trouble eating. There was something about them having to use warfarin during surgery and then ease me off it that I wasn’t cogent enough to understand, but that certainly could have gone worse.

Recovery was the pits. I scheduled myself 11 weeks off work and that was definitely the right decision, at least in terms of physical recovery, but oh gods have my finances suffered for it (more on that later). Once again I spent most of my time asleep or dozing, trying to stay ahead of the pain. My genitals and arm weren’t the worst part. The worst part was, without a shadow of a doubt, the catheter.

It was a suprapubic balloon catheter, which means that they made a hole from my lower belly directly into my bladder and ran a tube through it. If/when you have one, stay on top of the bladder spasm medication they give you. It was awful. Increasingly as I spent more and more time awake, the feeling of needing to pee urgently never went away. There were many, many times I’d go use the toilet, barely get anything out, wash my hands, come back out, sit down, and then get right back up to do it again within like three minutes.

The worst of it was the day before the cath was removed, three weeks in. I was told to stop taking the bladder spasm meds, and my opioids ran out the same day because I was only given I think 20 pills. That, uh. That was a 10 on the pain scale. I couldn’t move, couldn’t think, could barely breathe, all I could do was lie there holding back tears and wishing for death. I had never imagined my fucking bladder of all things would put me in such a state of pure abjection. The next day they took it out, which I was conscious and unmedicated for. The sensation was…oh boy it was weird. It was so weird. It didn’t hurt per se—in fact the relief was so instantaneous it almost felt ecstatic—but the feeling of a long tube with a collapsible balloon going FWOOP! out of an unnatural hole in my body was one to remember.

Recovery was a LOT less painful after that horrible cath was removed, but it got…messier. I was eager to start learning to pee standing up and let’s just say I did a lot of pants changes and toilet-cleaning, and gained a newfound appreciation for what parents go through when potty training AMAB children. I also discovered that I had not one, but TWO fistulae. Great.

A fistula is a tunnel in the flesh that goes from the urethra all the way to the outside of the body. This is THE most common side complication of phalloplasty (to the tune of 40%), so it wasn’t surprising, but it has definitely been frustrating. I told my RN about it and she said they usually heal on their own but if it’s still there in 6 months they’d correct it surgically. Sure enough, the bigger one closed right up on its own, but the smaller one right at the base is taking its sweet fucking time about it, so I have to go full cartoon frog and drop my pants to my ankles when I piss because if I lift my dick so as to pee with just my fly open I’ll get urine all over my underwear and probably my pants too. OFW.

The two biggest pieces of advice I got re: fistula healing were 1) keep your junk clean & dry and 2) spend time lying down naked with your legs open as much as you can.

Another frustrating aspect of recovery was that I couldn’t masturbate for almost three solid months, but that didn’t stop me from WANTING to. The upshot is that once I finally found that I could try it without hurting myself, I can get off in like 2-3 minutes flat if I’m lucky/keyed up enough—in comparison to how it took 45+ minutes pre-op. I’m still learning what works and what doesn’t, but when it works, oh BOY does it WORK.

Aside from that one day of Hell before the cath was removed, the biggest downside to this has been the financial one. The surgery itself took every cent of my savings. That’s fine, this is what I’d been saving for. But my income has been the biggest thing.

Short Term Disability Leave insurance, or STDL, pays nothing for the first 7-12 days of leave and then 60% of your normal wage/salary, not including overtime. At my previous corporate job, the place I worked at when I had top surgery, the company paid the missing 40%. At my current company, a few months before surgery I asked around and found a coworker who had recently been on STDL for several months. She said that this company also did that for her, and that she didn’t have to request it or anything, it just happened.

Fast forward a few weeks after surgery. I’m waiting for my STDL pay to come in. It doesn’t. I check their website and find out they don’t have my direct deposit information, because they never prompted me for it in any way (including any of the times I emailed or called them) other than a link inside their website on one specific page For payouts. And it was gonna take 4 weeks to process. And no, they said they couldn’t speed that up. I actually ended up having to submit my info twice and email them again to get it to go through. By then I find out they mailed me a physical check…on the 30th. So I had to wait 10 days for that to come in, and then two more days for the deposit to hit my account, and by then my rent was overdue for almost two solid weeks.

I also noticed that what I was getting was…A LOT less than what I usually made, even accounting for getting weekly pay instead of semi-monthly. I emailed payroll about it, and they had to ask around, and THEN, A MONTH AFTER SURGERY, I found out that NO, my company pays NONE of the missing 40% now. AWESOME. So get that info in advance, in writing, well before your surgery so you can predict how hard you’re going to have to save up!

Because it gets worse! For the end of August, all of September, and all of October, I made 60% of my regular income. I don’t make much as it is so that was horrible, and I was only able to get by on the priceless generosity of the friends I stayed with for the first 3 weeks. I went back to work November 18th, so I was going to have 60% from STDL for the first half of the month and my regular pay after that…except at my job, our paychecks come in twice a month with a full pay cycle offset, so between the 17th of November and the 13th of December, I had ZERO INCOME beyond what I could scrape in from Etsy, meaning that not only did I make a mere 30% of my normal income for that month, but I had to spend 100% of my paycheck for Dec 13 on overdue rent and bills, leaving nothing but my overdraft allowance for food, gas, and moving supplies. AWESOME.

But you know what? With the exception of the nauseated rage I still feel over fictional depictions of trans men in erotica and lingering resentment that my penis doesn’t work the same way an AMAB person’s does, my bottom dysphoria is fucking GONE. And THAT is worth 100% of the suffering and expense.

So, advice on bottom surgery: plan as far ahead as you possibly can. You’ll need laser surgery, you might need to lose weight and/or quit nicotine, you need to know if your employer pays the missing 40% STDL doesn’t pay, you need to save up probably several thousand dollars for hospital fees and post-op expenses, and you will need someone to drive you around because you ain’t sitting down comfortably anytime soon.

Oh also, your forearm will look like pastrami for a few weeks. Follow care instructions religiously. Move your hand around in every direction as often as you can. Do carpal tunnel type exercises. Go to physical therapy for it if you can. The longer it stays stiff, the stiffer it will stay. I’ve regained almost all my mobility back in my left hand by now, four months post-op, but I don’t think I’ll ever be able to touch my thumb to my forearm again. :( Oh well, small price to pay.

BOTTOM SURGERY, PART 3

There is one thing they typically DON’T due during the phalloplasty/scrotoplasty/vaginectomy surgery: your implants! These are optional but I for one am looking forward to getting them. One set of implants will be a set of silicone testicles. That means your scrotum will just be an empty sac for the first few months post-op. The other is an erectile implant that will allow you to more easily have sex as the penetrating partner. There are two kinds of these, with a few subtypes each: a flexible rod that you can pose manually, and an inflatable rod with a tiny little pump that goes into the scrotum. I don’t know which kind I’m getting yet. I don’t even have a date set for all that, but it’s typically done 6-9 months post-op, because they want you to be fully healed before going back in. That surgery should only have a 1- to 2-week recovery time. I’ve slept with a cis guy who has the pump kind and it’s pretty effective!

FINAL THOUGHTS

Gender identity is an incredibly varied and personal thing. My surgeon, and many other gender affirmation surgeons, believe that surgical options should be just as varied. If you like having a vagina but really want a penis, there are options for that—and not just metoidioplasty and Centurion, you can get phallo too. If you want your nipples tattooed on later or if you don’t want them at all when you get top surgery, you can do that. When making decisions for what kind of outcomes you want, talk to your surgeon about what’s possible, and if they’re worth their salt, they’ll find a way to come up with a transition path that’s tailored to your needs.

Okay, time to post this and hope Tumblr doesn’t eat it. If it does I might do something ill-advised to my iPad.

[tutuandscoot]

Hellooooo love, haven't heard from you in a few days, how are you? How is recovery life treating you? ❤️‍🩹 Which vm hug did help you most with feeling better? 😁

Helloooo right back to you lovely

Again thank you so much guys for checking in it means the world 💙

Sorry I’m a few days late on answering this but I’m finally doing it now.

So last Friday I had my second surgery. They came and woke me up at 6am. I had a pretty good nights sleep and probably the least amount of pain I’d had so far. I had to wait in my room in a dodgy hospital gown for about an hour which was super awkward but eventually they came and got me ready. I met the anaesthetist (it was a different one to the first time) and they took me to the waiting bay in the op theatre. The nurses that came to see me (anaesthetist nurses) both times were so lovely. The first surgery I was really nervous and I think they could tell so were super comforting but for this second surgery I wasn’t nervous at all. I was making conversation with everyone which is weird for me coz I tend to be very quiet around new people (I’m a bit anti social). I heard them keep saying that the surgeon wasn’t ready or there yet.. I made some joke to one of the anaesthetic nurses ‘so who wants to have a go with the knife if he doesn’t turn up’.. they thought that was funny. They asked if I wanted to go into the op theatre even tho they weren’t gonna start right away and I said yeh that was fine- they said some people can freak out being awake and alert on the table with everything going on- but since I had just been there a week ago I actually thought it would be cool so see everything going on while still pretty conscious (I may be a freak who knows)..

There weren’t any complications with this second surgery. It took about 5 hours- most of it I was on my side then they flipped me on my tummy to do an anchor screw. So I have 2x 5cm diagonal stitches on my left side. There is a strong tether rope screwed into my L1 and L4 vertebrae that is pulling my curve upright.

(The two white tapes are where the scars are and there is an anchor screw at the base of my spine)

I woke up in recovery this time and just remember feeling super positive. Then they took me to icu and when my mum came in I shouted out “WASSUP” (I was very high) the next few hours I was apparently talking about random af things, I was super fascinated with the nurse bell which was like a light up squishy orb button. Mum said I baciaclly just spoke in one sentence for 3 hours straight. The head of ICU at one point was handing off to my nurse for the night and he said “this is April. She’s very high and very happy” 🤣🫣 I swear I wasn’t that high and I knew what was going on but… idk.. I think my mum took footage of it. Eventually I crashed and my mum left for the night and I just remember repeating ‘I love you mummy’ about 20 times till she finally left 🤦‍♀️

That was the fun bit but in the middle of the night I woke up and was certain I was having a seizure. I had this horrible pain in my rib and it soon started spasming and causing the whole left side of my body to contract and seizure. The nurses kept saying to get me heat packs but I said it feels like I was being electrocuted. There was all these wire sensors stuck to me and there was one right where the pain was starting so I kept trying to rip it off. This lasted like 10 mins straight and I swear I thought my heart was gonna stop beating. I had like 10 people all around me, they went and got the doctor and then a portable X-ray machine. I think maybe they just thought I had woken up after not pressing my morphine button in a while, so anyway I think they injected me with a sedative drug coz eventually I calmed down once they brought in the X-ray machine. After that I just cried and cried. It was really scary and I didn’t know what was happening. Eventually I either fell asleep myself or the drug they gave me put me to sleep.

In the morning i asked what had happened and honestly I don’t think I ever got an answer. It obviously wasn’t anything serious tho. I’m gonna ask the surgeon when I see him for a follow up next week tho because there’s no way that was just ‘nothing’. The day was hard as are most post op days- Off the anaesthetic and having to press the button every 5 mins to keep the pain manageable. This day I had my favourite nurse. She was so lovely and stayed with me a lot of the day coz I was still so rattled by the previous nights episode. I think it made me so scared because of the complications with the first surgery, they said the second went well but then this happened.

I had a nap and when I woke up I was in so much pain I started panicing again. It was just that I hadn’t pressed the button in a while so my nurse came and coached me through breathing and managing the pain till I could administer more again. This surgery was far less invasive than the fusion surgery but caused a lot of pain in a different way. I was very swollen and bloated around my left side so I couldn’t sleep on that side and I also had a lot of stitch kind of pain. At some point this day I managed to go for a walk with the frame tho which they were very impressed with- less that 24 hours post op to be walking.

I think they were discussing whether to take me to the ward or not but I said that if I got a say in the matter I’d rather stay in icu given the incident the night before. I ended up staying in icu but hardly slept at all that night.

The next day I was walking on my own. Showered then later they moved me to the ward.

One of the effects of this surgery (part of which the surgeon warned me about) was pain in my left leg. But I was also getting a lot of pain in both my quads and hip flexors. Being an ex dancer, I’m very aware of my body and the cause and effects of muscles. They were hurting really badly I think because I couldn’t use any of my abs or back muscles to move around- especially sitting and standing. I had to constantly have heat packs on my hips just to take my mind off it coz the pain in that area was almost worse than my back.

That night in the ward was maybe my worst night of this whole thing. I was just in so much pain, I got maybe half an hour sleep. I was constantly ringing my buzzer for more drugs and hotter heat packs. One time at about 3 am I just burst into tears and said I wanted to rip my legs off coz off the nerve pain radiating down, i could also start to feel all the metal in my back.. it was just the worst night of my life (yes maybe worse than the seizure coz at least I slept after that).

Monday was just a really shit day. I didn’t move in bed at all, hardly ate. The physio came in at one point to see if I wanted to go for a walk and tell me I was doing great and I just didn’t even respond coz I clearly was not doing great. They came to get me for an x ray- they didn’t even bother asking if I want to go down in a wheelchair coz I looked so ill. They took me down in the bed and I think I was semi unconscious the whole time, except for the X-ray I jumped up to get it over and done with then got back in the bed and zoned out while they took me back up. That day was so bad that at one point mum asked if I wanted to just sit in the wheel chair and go to the cafe to get out of my room and we got to the elevators and I said nope I want to go back.

They (the nurses) in general had been super onto me about using my bowels coz I hadn’t in a while and I knew they wouldn’t let me out of hospital until that was sorted so Monday night I finally got that out of the way and once I didn’t have to worry about that I think in general I started to feel heaps better about everything.

Tuesday i started feeling a lot better. I got my new X-rays:

It doesn’t show up on the X-ray but there is a thick tether rope between those peg- shaped screws down the bottom on the right (left side of my back- this is taken from the front). That pulled my bottom curve from about 90 degrees to maybe 35 (I don’t know the exact degree). So while my spine is definitely not straight, it is a HUGE improvement compared to what I use to have.

My nurses on tuesday said I might be able to get out of hospital in the next day or two which made me so excited coz it had been nearly 2 weeks, 2 surgeries, some big complications but I was so ready to get out. Tuesday was in comparison to the others a great day. I walked a lot and faster and easier than I had before, I did stairs and even got down into all my splits!!

(Pls excuse my bed hair and my chipmunk voice 🫠).

I asked the doctor about a release date and he said let’s aim for Thursday, so that just made me even more eager to improve so I could get out Wednesday.

I eventually crashed and had to get into bed at about 3 but I was still feeling good and was managing pain a lot better.

That night I slept so well! In a few 3 and 4 hour blocks and slept till 9 am! The nurse actually had to wake me up. I asked again about discharge and they said all my ops were looking good so as long as the doctor clears me I could go. He came in at about 10 and said I was free to go!!!!!

My mum had booked an air bnb across the street so she had been staying there and it was nice I had a big bed and, just homier sort of place to go to rather than a hotel. When I got back I had some lunch but then went and had a nap coz just packing up my hospital room was very exhausting. I had such a deep sleep when I woke up I randomly started crying. It was just very emotional and learning now how to walk and get around a sort of house was alot.

Thursday was a really good day- hardly any pain, sat up all morning watching tv, then went for a walk down the street. I have a walking stick just to help with balance but its also good just as kind of a signal to others that I’m a bit fragile at the moment- coz u wouldn’t know just looking at me.

Friday I spent most of the day in bed but was still feeling good.

Today (Saturday) we had to change accommodation, we’re now in a hotel for a week until (hopefully) the surgeon gives me the all good to fly next Saturday.

As for VM hugs…

So these ones have been my go-to help me breathe and stay calm (for this surgery they had to deflate my lungs so breathing exercises have been part of my rehab) but of course they also bring me a lot of happiness: