#I hate the constant doctors appointments and tests and procedures!

[autism-swagger]

I HATE BEING DISABLED!!!!!!!!!!

[struggling-to-find-home]

Here's a little secret about me: despite recieving a medical education, I hate being a patient. There are a lot of reasons: medical trauma, the general assholery of the medical system, the fact that noone explains you shit, the fact that doctors mean time, and effort, and sometimes money, and every single time I feel like I shouldn't be taking their attention from patients that are more "worth it".

When I was seventeen, it took me throwing up 14 times, nearly blacking out and falling into an almost-crisis state before I agreed to be hospitalised. And, as I was lying in bed, a litre of saline solution being deposited into me asap because the dehydration was that bad and two ambulance personnel holding me down, I still tried to get up to pack my things to get to the hospital.

I spent five days there.

I don't remember much of the first two ones, constantly blacking in and out of consciousness.

This year, I had to face something even more uncomfortable than being the asap hospitalisation person - and it was... Planned medical care. A planned surgery, to be exact.

I wasn't nervous about the procedure itself - when you spent like, a year constantly talking about pre-op and post-op and assist in surgery during practicals and see people cut open and cut open some stuff by yourself, the idea of someone rummaging around inside of you with tiny knives looses the typical "oomph" it has. I mean, I was being put in a special facility that's specifically for situations like mine, with a team of surgeons who spent years honing their craft. I knew what was going to happen. There would be anaesthesia, for god's sake.

But everything around the whole thing was just... Ugh. Doctors, nurses, tests, more tests, even more tests, the lack of communication leading to a nervous breakdown happening due to me not knowing when to come in... And, to top it all off, the damn tumour, like it knew it's days were numbered, was causing more and more pain by the day. Life lost it's colours. I spent day after day stopping, freezing up when another pain wave hit, coming home exhausted after having to mask it, slowly slipping away from socialising.

I have to leave, I've got an appointment.

Sorry I skipped your class, I had to get some tests done.

I'd love to go with you, but I need to clean my apartment; I doubt it's gonna be on my mind when I get back with a cast.

The only thing that kept me going was a deep, grim understanding: this is miserable, but continuing to live with that... thing growing inside me is worse.

... It's all over now, of course: nearly a week of school missed, a hazy experience, - god, they really overdid it with the drugs, - stitches, and a cast on my hand.

And it doesn't hurt anymore.

...No, I mean, it does, but compared to before? Piece of cake.

Nearly a year of constant worry and pain, gone.

Soon, all I'll have to show for it is a neat little scar on my hand that'll show that one day in the past, little old me was scared enough - and brave enough - to take the first step.

And as time slowly marches on, the colours that bled from my life, taken over by increasing pain, slowly turn bright again.

I'm just.

I feel like the joy came back into my life.

Like things have purpose again.

Like I can live.

I can live.

I don't have to feel pain anymore.

[thoughtsonchronicpain]

8/15/2023 (evening)

I don't think I've mentioned this, but in a shocking turn of events, after over a year of feeling like there's a lump in my throat, the CT scan revealed... drumroll please... that there is a lump in my throat. It looks like it's some sort of thyroid nodule, so I'm going to see an endocrinologist. And after over a year of dealing with near-constant swallowing, I am getting referred to a swallowing specialist.

You may be wondering, why did it take over a year for these things to happen... I guess it's my fault, in a way. The healthcare system sucks in this country, and the only way to receive quality care (besides having the money for it) is to be persistent to the point of being bothersome. I hate being a bother. I hate feeling like I'm inconveniencing people, especially when the only motivation I have to inconvenience someone is my health.

Well, it is these people's jobs to deliver healthcare. So maybe I shouldn't feel like such a bother. But it's hard not to feel annoying when some of the doctors I see make me feel so dismissed.

Probably the most traumatic medical experience I've had was this past spring. Below is part of an email I sent to my gastroenterologist about it:

--------

My experience with the pH test and swallowing study was really, really negative. I couldn't complete the swallowing study because of the extreme pain and discomfort the big catheter caused me. I could not go without swallowing or retching or coughing for more than a couple of seconds so he was unable to get any data. 

I was also visibly upset and uncomfortable during and after he put the smaller catheter in for the pH study. After he put the smaller tube in, he explained how the device worked. I was very obviously crying during this interaction. He then got up and left his office, and then showed the nurse what I had retched up in the sink, and I heard her say, "Damn, I just ate lunch." And they had a bit of a laugh about it.

When the doctor walked out and saw me standing outside he said "You're done. You can go." And pointed me towards the exit. I felt extremely dismissed and neglected when leaving the office. 

The following three hours were terrible. I did not stop crying, and was in constant pain. It got really bad when I moved at all, breathed through my nose, or talked. 

I called your office but you were unavailable so I ended up taking the tube out after about three hours. 

When I went to the office the following day to return the device, the person at reception asked how long I had it in for and I said "three hours because it really hurt." She then commented and laughed that it was a record for how short of a time someone had it in. She told me that most people said it barely bothered them and she had only seen one person who really wanted it out after the full 24 hours. 

I tried to be pleasant but was tearing up. She then went to the doctor to tell him and she came back and said that he wanted to know how my symptom was during the three hours. I said that I couldn't even tell how the globus was because I was just in pain the whole time. 

I was very upset (although maybe not visibly), but was voicing that I had experienced pain due to the study, and was met with jokes and absolutely no concern for my wellbeing whatsoever.

This was extremely invalidating and upsetting. The three hours of pain was awful, and coupled with being dismissed by the staff and doctor made for a very traumatizing experience.

--------

So yeah, that sucked.

Also, the doctor who did the PRP epidural in my lower back (which, in case you are wondering, did absolutely nothing to relieve my pain) was very dismissive.

I'm not sure if I'll be able to explain this well, but basically in the follow up appointment to the epidural, he talked at me about the procedure and how it should/would make me feel better (it hasn't). Whenever I said something about my symptoms since the procedure or about what I've been doing in PT, I felt like I was interrupting him. I could barely get a word in during my appointment to talk about my own body. Whenever I did manage to say something during the appointment, he wouldn't respond to it. He made it seem like I was interrupting him by being like, "Yeah, yeah. As I was saying..." and not acknowledge what I had just said.

I really respect my ENT and know that she is extremely competent, but she sees so many patients that I don't feel attended to, I guess. She seems to rush through our appointments because she's so busy, so I get caught up in that rushed feeling and tend to forget what I need to tell her to get the appointment over with so I don't take up too much of her time.

It sucks that even though I have the necessary resources (both time and money) to see these doctors, it's not enough. In addition to being in constant pain, I feel like I have to actively fight to get my doctors' attention and care. It's definitely not a bad thing that I'm being forced to learn how to be more assertive, but all of this shit still sucks.

[phantom-of-the-memes]

I hate you refilling meds at the end of the week I hate you higher doses I hate you new symptoms I hate you comorbidities I hate you degenerative diseases I hate you chronic pain I hate you constant doctor appointments I hate you hospital trips I hate you blood tests I hate you mri scans I hate you ultra sounds I hate you physio I hate you invasive procedures I hate you surgeries I hate you gaslighting doctors I hate you snobby consultants I hate you “I know more than your lived experience”.

[unichrome]

I’ve been wanting to write down as much as I can remember from the month at the hospital in April, and this tumblr blog is the only thing I have that even remotely resembles a journal. So here it is, feel free to read and comment if you’d like, but please don’t reblog.

I was living in Copenhagen when this happened.

A few weeks prior, I started a new medication, an antipsychotic so the usual side effect was to be expected: tiredness. But I’ve been in this carousel before, I know the worst is over after a week or so. I did indeed become extremely tired, and this was during working-from-home corona days so most shifts I ended up napping in the couch at any chance I got. Easily slept 12+ hours per night. It kept getting worse, I couldn’t stay awake during the days, became extremely lethargic. And it didn’t get better after a week, it just kept getting worse. So I called my psychiatrist and told her the medication wasn’t working and I felt so very bad and tired.

I got a new appointment with her, which I can’t even remember really. She got worried and sent me off to the psychiatric ward, where they did the standard blood test. Then sent me off to a room. Luckily I had anticipated for something like this to happen, so I had brought the work phone as well as chargers, so I could call in sick to work. A while later, three people suddenly entered and told me I had to go to the hospital right now, two of them were from the hospital transport. They took me to Amager hospital, I was so confused and not really present at all. I don’t know what they told me, but I needed a blood transfusion immediately. I stayed there for a night, the only thing I can remember is going to the bathroom once.

The Amager hospital apparently wasn’t capable of providing the care I needed, I was transported yet again, to Rigshospitalet. The memories from here on are very blurry and sporadic. Eventually I heard that both of my kidneys were failing, when I was admitted on April 22nd, my kidney functionality was around 18%. If it drops under 20% it becomes lethal. Kidneys are also responsible for the production of blood, which wasn’t happening anymore and I had a very dangerously low count of red blood cells.

I’m super difficult to get blood from if the first attempt isn’t successful, as the poor nurses became painfully aware of after failing on the first try. During one of the first days there, when the daily blood test was to be taken, they didn’t succeed. Three nurses tried, eventually they called for a narcosis doctor to try with a ultrasound machine to find my veins, but it didn’t work very well either. They stung me all around the body, down to my feet and it took at least an hour to get the sample and my body had pretty much gone into shock since medical procedures and needles of any kind are one of my worst fears. Because of this it was decided to install a port for draining blood so this wouldn’t have to be repeated every day.

A kidney biopsy was ordered as well as more detailed blood tests to figure out why this kidney failure was happening. I would also have to call my parents in Sweden and tell them what was happening, and the fact that they couldn’t come and visit me, at all. I was in a quarantined zone of the hospital where no visitors were allowed, not even family. But also Denmark had closed its borders at the time, so they couldn’t even enter the country in the first place.

My only contact with the outside world was my phone that I treated as the most precious thing in the entire world, it was also pretty much the only thing I had with me. I would have long calls with my family talking about the most mundane and boring things but it was such a blessing to hear about, I would drag out the subjects as much as I could and so would they. I’d often cry after having to stop the calls.

The biopsy and tests revealed that I had antibodies that shouldn’t be there. My immune system was attacking the body, pretty much. This autoimmune disease is very rare, Microscopic Polyangiitis, and will cause kidney failure (and other organ failures) if not discovered and treated in time. Since I barely had any prior symtoms, it wasn’t discovered in time. My lungs were also examined as the disease usually targets kidneys and/or lungs, but no significant damage was found there luckily.

I was put on steroids (prednisone 60 mg) that would support the kidneys and dampen the damage from the antibodies as well as chemotherapy (Sendoxan 100 mg) that would shut down the immune system almost completely. Synthetic hormone injections every week to stimulate the production of red blood cells.

Every morning a blood test was done a 6:00, as well as checking the temperature and blood pressure. I was forced to drink 3 liters of fluid every day (which I logged on a paper meticulously - every ml counted) and I could only pick between water, disgusting orange juice or disgusting apple juice. Except during lunch, when I got a small package of milk - this became pretty much the highlight of my day. One glass of milk. That was like pure joy, it tasted so divine. In just a few days your entire world shifts in such a way that this package of milk is what you look forward to the next day.

All day I was bedbound and in a haze, time was entirely dependent on medicine, meal and test times like a work schedule, from the 6:00 tests to the final 23:00 medications, that left 7 hours of rest that was robbed from me because prednisone makes you unable to sleep well, even with the sleep aids I got. Despite being in bed almost all day every day, I was constantly sleepy and tired but I would never get any rest. Couldn’t even pee normally either, had to collect everything in a bottle for them to log.

But of course it would get worse. After about 6 days, my doctor came in and told me that the treatment didn’t seem to be working fast enough. My kidney functionality kept dropping, now at 13%, creatinine levels above 400 (it should never be above 80 for women, around 200 is kidney failure). They had one more weapon to combat this - plasmapheresis. This would mean connecting me to a machine that would take out my blood, clean it from the harmful antibodies, and put it back in again. Hopefully this would buy me time for the treatment to win. To do this, they had to cut up my throat to insert two tubes that would take in and out the blood. I had to be awake during the whole procedure to control the breathing as instructed.

I wasn’t connected to the machine all the time. A few hours every other day. It was noisy, sounded like a miniature washing machine, and I hated it so much. The tubes in my throat, blood going in and out of me, it was just pure terror even if the procedure itself didn’t hurt. I got some mild sedatives but they were way too mild and didn’t do shit. The fact that I didn’t have to be connected to the machine every other day became yet another highlight like the milk. I’d talk about how today was such a good day because it was a no machine day, like a holiday.

Showering was horrible too. Because of the tubes I had to avoid getting them wet as much as possible while still somehow washing the hair. Then the tape around the tubes had to be changed and I hated anyone touching that area. I went for as long as I could between the showers, up to 9 days.

I was quickly becoming very weak, as the medications and chemo ate away at my bones and muscles. My legs have always been strong, I’ve had no problems doing squats with a grown man hanging on my back. But one day when I was in the bathroom, I spilled some toothpaste on the floor. I squat down to wipe it, but I couldn’t get back up again. My legs were way too weak. I ended up having to drag myself up via the toilet and sink, it felt so humiliating I refused to use the button to call for help. I bet it took several minutes to get back up standing.

It was still very unsure if I would make it, the plasmapheresis wasn’t a guaranteed help. One day a psychologist came to talk to me, but the only thing I remember is that he asked if I was afraid of death. I told him that my current biggest fear was the damn tubes in my neck, the constant needles, every day the touching and prodding of my body, but it didn’t seem like it got through to him. Maybe because my Danish was so damn shitty too, I could barely articulate myself and what I felt in Swedish, much less in English or Danish, I think I was mostly rambling incoherently.

In the meantime my parents had been writing the hospital for updates and visitation possibilities, and eventually the kind nurses and doctors there started fighting for getting my parents to visit. They got granted an exception by the hospital to visit my room once per day, but they still couldn’t get into the country. My parents contacted the Danish police asking if an exception could be made since it now was entirely possible that this could be the last time they’d see me. They were eventually granted permission and now the final hindrance remained - getting there. Since they live far up north, the transportation options are limited especially during corona. There were essentially no flights, so the second best option was train for about 2 days.

As luck would have it, the plasmapheresis did help, my kidneys were slowly recovering and once I got up to around 25% functionality, I was free from the damn machine and the medications now had the upper hand against my stupid immune system. In the final days at the hospital, my parents arrived. And we could actually be happy because it seemed like the danger was over. I begged the doctor to release me and let my parents help me at home instead. I knew how to take the medications by now and it wouldn’t be necessary for daily tests anymore. She agreed but I had to come to the hospital every few days for a checkup.

And that concluded my first chapter of this disease and kidney failure. Thank you for reading all the way to here, I appreciate it.

[transcendentalmaggot]

(This is just me screaming about living with a disability in our present hell and being in a constant state of precarity with everyone asking when I’m going to “get better”)

Finally received approval of my temporary disability from January... and only for January. The paperwork was delayed due to a combination of me being incredibly ill and my HR department not sending the paperwork when they told me they did, but I didn’t expect it to take this long. The approval, received on March 26th, also included a request to submit additional paperwork for approval of February’s payment. I had already called and emailed my case worker to confirm they received the February paperwork weeks ago but I guess that will be delayed until my doctor fills out a form that is simply a retread of the same information included on the original form with different wording and a bunch of information on physical labor that is completely irrelevant to my job. Temporary disability through your job is almost always determined on a month-to-month basis but it’s never taken this long for a response when I’ve had to go on it on the past due to my disabilities. I knew both the health and disability insurance policies at my job were significantly worse this year than the last based on the information we received for the New Year because the company is naturally looking to save money by cutting benefits while moving our warehouses to the south to save even more money on labor. The new owners (a holding company looking to maximize the value of this bullshit, useless company until they sell it in two years for a profit) literally sent an email at Christmas letting us know we’d receive our holiday bonuses for this year but as a matter of policy we wouldn’t be receiving them in the future. Of course I’m expected to be grateful I have any insurance coverage at all working a CS job where I’m making minimum wage but somehow I feel less gratitude than I do an overwhelming sense of dread and anxiety for the future. I haven’t been able to get several tests or doctor’s evaluations completed due to the pandemic and financial considerations (my deductible was met in late February, perfect timing) so of course my health status hasn’t changed. The hospital I go to in NYC has cancelled all non-urgent procedures and appointments on a case-by-case basis and despite my concerning blood work re: my kidney function I’m being forced to wait by the insurance company handling my disability claim with no consideration of the current crisis. I understand the need to do this for hospitals but please be cognizant of the shitty position people with chronic health issues are being thrown into during the pandemic. I can make telemed appointments with my doctors but everything is being held up by the need for tests and lab results.

There’s also something grim about the fact that the outstanding balance I owe from this year’s deductible to the hospital is almost the exact amount I received to live on for the month of January in March.

I’m exhausted and sick and completely isolated from my friends and chosen family outside of instant messaging at my dad’s house and I don’t know if my health will ever get better or if I’m going to need major surgery in the near future and if I’m going to be fired and lose my health insurance by the time I find out. My boss emails me every two weeks to ask about my health as if I’d ever give her more information on my status than she already has. My manager keeps texting me prayers at random intervals. I’m purposefully isolating myself from the people I love because I constantly feel like a burden - I hate not being able to be there for them because being this sick feels like a full time job. Apparently their awful treatment of me was because of how “needed” I was. These texts and emails keep mentioning how productive and beloved by the customers I was while I was constantly being criticized for not bringing my numbers up. I was only number 2 or 3 in the reams of useless data my boss pores over as a fucking job and the obvious reaction to that is to make me feel awful knowing about my health issues so I can raise my numbers even higher. I don’t know if I can return to this job without completely sacrificing the last shred of my sanity. Between the pain, the exhaustion, and the panic attacks induced by people berating me with the job title “happiness ambassador” I don’t think I can handle working with these assholes anymore. But then I remember that any job in CS involves this level of mental degradation and at least I had health insurance. Fucking insurance. I’ve lived my entire life under the crushing terror that I would lose my insurance. I’m just tired. I’m so fucking tired. I can’t afford the medical supplies I need to live without it and Medicaid is incredibly awful to ostomy patients in terms of providing enough supplies. But maybe that’s my fear talking, I’ve just helped a lot of people with catheters and other supplies who didn’t receive a sufficient supply through their state’s Medicaid program through support groups for my condition in the past and the problem has only gotten worse with the severe under funding and cuts to the program. I want to believe it isn’t so awful but experience has taught me time and again to expect the worst.

I’m trying to hold onto hope but everything feels too heavy right now. I’m just going to numb myself with video games until I’ve cried myself out. I’m too exhausted for another panic attack today.

[if-there-was-any-more-left-of-me]

I can't put into words the rage and betrayal I feel today learning that my mom's negligence cost me my health insurance.

Forget the constant doctor's appointments, and the tests and procedures I need, how am I going to cover the $2000/month prescriptions?

I hate my life and I hate my mother.

[xellandria]

I don’t remember if I’ve talked about it much/at all here on tumblr (looks like mostly not—I brought it up in passing in my post-BlizzCon post but didn’t go into any sort of detail), but off and on for the past year or so I’ll have days where my feet will swell up, feel like they’re burning, and be noticeably hotter to the touch than the rest of my body.  I brought it up to my doctor once cos it seemed like it might be not-so-great to let progress and she handwaved it away as [something I can’t remember cos this was like April of last year but which boiled down to “don’t worry about it it’s probably just a cosmetic issue”].

In Novemberish, it went from being a “once every week or two” thing to an every night thing—I wouldn’t be able to sleep for more than four or five hours at a stretch cos my feet would wake me up, and it would take 4-5 hours for them to settle down enough for me to go back to sleep (at which point I was either too awake to do so, or out like a light for another 4-5 hours).  I eventually made an appointment with my doctor to talk specifically about it (because if that’s all I’m there for it’s less likely to get brushed off again, or something) and she sent me to a vascular specialist, who in turn had me come back today (once my insurance had authorized some tests) to get said tests done.

The good news: the issue is not in my arteries; evidently if it had been, I would have needed some sort of surgery pronto.  I didn’t get much more information than that, since it wasn’t the issue, but since the specialist led off with that I figure it’s one of those “I’ve got bad news for you but it could be worse so here’s something to make the hit less painful” things, lol

Said bad news: the issue is in both my veins and my lymphatic system; the lymphatic issues (lymphedema, specifically) doesn’t have a cure and is expected to be a life-long issue that can be combated somewhat via the use of compression devices.  Because I’m both tall and fat, I will likely need to have them custom-made; I was given the business card of a lady/company in town who does that and will follow up on that at some point in the near future, but I don’t currently know how much that will cost (but given that it’s custom-made I’m gonna guess it’s probably in the $250-700 range).

The vein issue is actually curable/solvable (however you want to look at it), however my insurance doesn’t cover the procedure.  I asked the doctor about how much it would cost out of pocket and his first estimate was ~$4-5,000, but that their office usually offers a discount for people paying with cash so it might be more like $2,500.  Given that that’s a fuckload of money that I do not (and likely will not) have, he suggested that I try the compression stuff for now, as he estimated the vein thing would only give 20-30% reduction of symptoms (or it might have been that the vein thing is 20-30% of the problem; I can’t remember now which, sigh.)

He had one of their staff put together an actual estimate for the whole shebang afterwards, and uh... the $2500 with the discount?  That’s per leg.  Plus a third session that costs twice that to do the backs of both legs.  Total estimated bill, not including any followups that insurance might also not cover?  $9,801.68.

(In case you’re curious, that’s about 20x the amount of money I made in 2018.)

There is a bright side, at least (which I forgot about while I was bitching about all this on twitter immediately after getting home and taking my shoes off): evidently there’s an alternative form of treatment, and there’s a clinical study coming up in March or April-ish for that alternative that subsidizes almost all the cost of said procedure.  It evidently has a similar success rate as the $10k one and has been around for a while, but most private insurance companies aren’t on board with it yet cos there hasn’t been enough studies done.

I put myself on the list for that, and am hoping that works out cos, you know m o n e y  .__. but we’ll see if that pans out or not.  Meantime, next week I have to call my insurance company to see if they will cover the compression stockings at all, and then call the company/lady who makes them to see what I have to do on their end of it, and then I have to decide if I love/hate myself enough to be in constant minor pain/discomfort to reduce/relieve near-constant moderate pain/discomfort.  Realistically I should do that last bit first, but y’know.

I’m still a little unclear on why they’re treating my legs for pain issues when it’s exclusively my feet that are the problem, but I suppose that’s something I can bring up before I commit to either the mostly-free procedure or start a crowdfunding campaign to try and get the $10k one done instead.  Obviously they’re connected but like, they didn’t even look at my feet a little bit during the ultrasound today so like?  idk.

Anyway on top of that yesterday I made myself super sick by taking my medications (1/4th of what I usually take in an attempt to titrate up was still too much after five days of not taking them at all); I called that particular specialist this morning and told her( assistant) that I can’t tolerate that particular medication anymore and am going to stop taking it; waiting to hear back what she wants me to do about the blood/urine tests I have scheduled since presumably not being on the metformin anymore is going to mess with those results somewhat.  I had to bail out of raid early because of it which I am less than thrilled about; I don’t think I missed a kill but I know I wasn’t helping to secure much of one last night, either :\  I wonder if we’re on for normal on Sunday (or not because of sportsball)?

So yeah that’s all that.  Life sucks and then you get even more dumb medical conditions piled on top of it.

[umflowers]

Gastric bypass update/rant

I have my first appointment with the nutritionist tomorrow and I’m already hating it. My insurance company requires I see a nutritionist for at least 3 months before being approved for surgery, and it’s one of those times where the medical community is rigged against the neurodivergent. I already successfully lost 230 pounds without surgery. I already make macro-based diets. I already know what I need to eat and why, and what I need to avoid and why. I put most of the weight I lost back on because my chronic pain (horrificially exacerbated by my retail job at the time’s indifference to my disabilities), combined with living with my in-laws for six months (there were munchies in the house and my father-in-law was triggering tf out of me 25/8), was greatly limiting my ability to workout (something I genuinely enjoy). All of that swirled together into a constant gutpunch of depression, self-loathing, worthlessness, and a desire to punish myself for not living up to my own expectations and feeling helpless to change. The only reason I’m seeking out the surgery is that my once again increased weight is now worsening my chronic pain to where I can’t do much of anything at all (including sex, grocery shopping, working, having hobbies), I feel completely out of control of my life (which leads me to compulsively eat, as that’s why my ED developed all those years ago), and there’s nothing that breaks up the constant flow of “you should kill yourself” because all I do is sit on the couch being bitter about being in pain, bitter about the course my life has taken, bitter about how I’ll have to fight for the rest of my life to achieve a fraction of the happiness that many people have naturally, and hyperfixated on all the things I know I should be doing but am not because drowning in guilt takes up literally all of my time, which just adds on more guilt. So I have to pay some woman for a minimum three months’ frequent appointments that aren’t gonna accomplish a goddamn thing, not least because I have a horrible history with nutritionists that I was forced to see that goes back to middle school. The pre-appointment information packet already asked about food diaries. Every time I had to see a nutritionist, or it was brought up by my doctor, or a well-meaning personal trainer friend asked me to keep one, I tried to explain that it makes it so literally the only thing I ever think about is how much of a disgusting fatass I am, how my weight is a direct result of my mother sexually abusing me and the complete removal of any form of self-identity I may have had, and leads me to start cutting again in earnest to try to take the focus off food. And I always give up within three days anyway, because the constant panic attack isn’t worth it. Despite the fact that I feel like the world is burning around me if anyone I have to answer to is angry with me, I’d rather take that than experience what keeping a food diary does to me. And every single time they demand I explain why I don’t want to do it, listen attentively, and then say “well do it anyway”, then get mad when, shocker, I don’t. Oh, and so far, thanks to all my chronic illnesses, I have to have a full panel of bloodwork (my last full panel was I believe 12 tubes), an EKG, chest x-rays, whatever it’s called when you swallow ink for imaging, an endoscopy (camera tube down my throat), and two other procedures (while I’m under anaesthesia for the endoscopy) that I can’t even remember the name of. And a sleep apnea test. And I think I have to wear a Holter monitor again. And a mandatory psych eval that I had to schedule out two months, and apparently they’re gonna diagnose whether a borderline person is mentally fit for surgery in one appointment. And there may be scar tissue from my emergency surgery, due to proximity, that increases their risk of knicking and damaging an organ while performing the procedure. And the procedure I’d prefer, sleeve gastrectomy (which doesn’t fuck up your body’s absorption of psychiatric meds [which I hope to go on post-surgery]), may worsen my already severe GERD and LPR (that has already eroded my esophagus to the point of drastically altering my voice). And the fucked up thing is, I’m still excited. I’m still gonna, to the best of my ability, do everything they demand. I’ll jump through every hoop if it means I can regain some control of my life, get through a night’s sleep without pain, have sex without dedicating part of my thought process to if something’s about to cramp, hike the little trail in the next town over again, get to hone my cooking skills because I care about content and not portion, reduce my IBS symptoms and not feel anxious every time I have to go, get a full-time job and be able to pay for therapy (and heating oil, and food, and our bills), maybe even get my license and use it just enough to go to the library or volunteer somewhere. That’s all I want. I just want a life. I’m just really fucking frustrated. That’s all.

[natkat-140]

bad days / good news

Hi everyone, I have some good news after my doc appointment. My eye is healing well and everything looks good. I now only have to be facedown 4 times a day for one hour each time which is music to my ears. I still am blind in my right eye which is worrisome to me but the doctor said that's normal and it can potentially take months to regain my eyesight. Ultimately though, this means I can now sit upright most of the day, resume more normal daily living, and PLAY GAMES WITH YOU!!

I appreciate you all for checking in on me so often and keeping me in your thoughts. It really did mean a lot to know that you were thinking of me and hoping for the best for me. That being said… I don't like showing it but I was struggling quite a bit this last week. Whenever someone asks “how are you?” I feel obligated to give a nice answer and move on. “Doing well, can’t complain, hanging in there.” Because nobody likes a downer, nobody likes hearing “I feel awful, the isolation is killing me, I’m worthless, I’ve been crying all day.”

I've been on medical disability 4 times in the last 5 years for completely different reasons and that has taken a toll on me. Productivity, work, being helpful, being useful - those things are important to me and my mental health. Being a nurse gives me a sense of purpose and fullfillment. Because of that, when I'm unable to work and / or need assistance myself, I struggle with feelings of inadequacy, being useless, being a burden, and generally being a pain in the ass. 

Having that physical restriction of being face down all the time and unable to lift more than 5 pounds multiplied those feelings, because I couldn't do *anything*. My apartment was an absolute wreck, my cats were sadly meowing at me because I wasn’t able to snuggle and play with them like I usually do, I had zero dishes left to use as they were all piled in the sink… everything was difficult, even watching TV or playing video games was hard in that position. My neck, back, and shoulders were constantly sore and the only thing that felt good was lying on my back, which is the one thing I wasn’t allowed to do at all.

But I hate complaining about that. I hate it. I am complaining about first world problems. I had a highly technologically advanced surgical procedure on my fucking eyeball that might give me my fucking eyesight back and I only had to pay $100 for it. I have access to the medications I need and the post-operative appointments with medical experts 15 minutes down the street from me. I am able to recover in a comfortable, peaceful, temperature-controlled apartment with minimal pain and maximum privacy. I have high-speed internet and am able to keep in touch with friends via text and video calls at my literal fingertips. And I’m complaining that I had to…. *lie down*. It feels so selfish and entitled to complain about that. 

But really it’s more than that. It’s still very possible that I’ll be completely or partially blind in my right eye even when I’m completely healed.There’s no guarantee that this surgery will have worked. I have anxiety about going back to working in the hospital if my eyesight comes back. I also have anxiety about not being able to go back to work if my eyesight doesn’t come back.

I still haven’t been cleared of HIV either (ICYMI: I had a needlestick injury from an HIV positive patient in December and am at risk for contracting the virus myself.) I won’t be fully cleared until another two tests come back negative in June. Even though chances are slim that I will be positive, and I know there are medications and programs to help manage it if I do turn up positive, it’s fucking scary. I already have so many issues due to my type-1 diabetes, and adding HIV to that only opens up more possibilities for things to go wrong. 

And these are all things on top of every day anxiety and depression, the regularly-occurring negative automatic thoughts, the almost-constant isolated loneliness, the ever-present mild executive dysfunction. It was just a lot to deal with and I can normally do enough thought exercises to remind myself of the positive things in my life and how much good there is around me and that things aren’t that bad. But I did it for too long for too many things and never really allowed myself to be sad or scared or face the actual reality that things might NOT get better. And this past week, reality hit me hard in the face, and I was scared, and I felt alone, and I was sad. 

Anyways. Today I got out of the house, went to the doctor, and got some good news. My dad treated me to fish tacos for lunch and we went grocery shopping. He helped me take out the piles of trash bags, put my furniture back where it was before my post-op modifications, and straightened a few things up for me. Even in the first couple of hours since I’ve been home I’ve been able to do a few things that have made me feel SO much better. I can’t believe the difference in my mood from only 24 hours ago.

I’m already feeling a lot more optimistic and energized. I am so glad to have the people in my life that I do; not only IRL family and friends, but my online friends with whom I’ve developed meaningful relationships and who have done SO much for me these past few months. Thank you all, I love you. See you soon ;) get it because I’m blind in one eye?!?! 

[lachryphage]

some personal stuff about having the sads lately

This past year has been so very strange. In a lot of ways I feel like I’m working towards some sort of breakthrough with my mental health -- I have more motivation and direction and independence -- but I’ve also been saddled with an overabundance of grief.

 It’s been little over a year now since I moved out of my childhood home -- a place turned sour by my parents divorce. I was running away from my father. The negative (dare I say abusive?) behaviors he once exhibited to my mother were suddenly turned on me. It was a betrayal I don’t know if I’ll ever be over. I trusted him and loved him as any child should and I still can’t believe his blatant disregard for both my mental and physical well-being. 

Moving out was so difficult. I still have many boxes I haven’t unpacked. But I’m getting there, I finally have a sense of home again. 

This summer I wanted to get to know my body again: give it a second chance. I went off my birth control. Doctors always told me that my horrific periods were something I would grow out of and I wanted to see if that was true. It’s been over a decade now since I started puberty; I really believe that if it were going to get better it would have by now. It didn’t. I forgot how intense the pain was and -- even worse -- the fear. I was taken to the emergency room against my will. Unable to move, barely able to speak, I had warned my mother and boyfriend that they could do nothing for me there. Doctors don’t care. They didn’t care. 

My GP offered an IUD as a solution. I probably have endometriosis, but she didn’t think it was important to confirm what’s really wrong with me. I have no official diagnosis. Whatever is wrong, she insisted, it will be fixed by hormonal birth control.

I said yes to the IUD.

I don’t know if I truly regret it, but the procedure was one of the most physically and emotionally traumatic events of my life. It would leave me with pain levels barely below what I experienced on my periods and constant bleeding for two months. I was taken to the emergency room again at one point, terrified the IUD had perforated my uterus. Once again I was manhandled (actually the only kind and gentle doctor I met that day was a man, the mean ones were women) and told to deal with it.

I haven’t had a period since that endless bout of bleeding. I get minor cramps now and then, but no period. I guess that means it was worth it.

In the meantime, my joints are hurting, aching, making physical activity increasingly difficult with each passing week. My joints have apparently always sublexed but now it was hurting when they did and it was more frequent than before. Joints that I never had trouble with are now bothering me daily. My doctor cannot possibly deal with more than one symptom at a time. I had to wait for my IUD troubles to clear up before asking for help. I have a referral to genetics to see if it’s EDS but they may not accept my case. If they don’t, my doctor will have no idea what to do and will give up.

Physically, I am in pain and exhausted. But I know how to handle those. But grief? I know how to deal with depression, a feeling that comes from within, but grief, external to myself?

My Aunt Jan died. I was more similar to her than anyone else in my family, closer to her than anyone else but my mother. I knew she was dying, I told everyone and they didn’t believe me but I knew her. In the past few years, during her bouts of insanity I could understand what she was trying to say when no one else could. And she is gone. I can’t help but wish I spent more time with her and hadn’t been so obsessed with school. Because of school, I haven’t had the time to properly mourn her. So many of her things have made their way into my house.

I can still smell her. Sometimes it’s a comfort but sometimes it takes me back to that room on that night and the death rattle that I breathed in rhythm to until her very last breath.

When I was very little, I picked out a cat for my Aunt Jan from the shelter. She was older than most adoptable cats, tiny, mean, and black. She was perfect. Jan named her Little Bits.

When Jan had to move into a care facility, Little Bits Was effectively abandoned for over a year until Jan’s old house was sold. We tried to bring her into our home, but at the time we had four other cats and she hated any animal but herself. She was constantly stressed, angry, and lonely. When my mother left my father, she took Little Bits with her. Finally, those two old women found solace in one another. A month after Jan died, Little Bits died to.

My mom was out of town, we knew Little Bits was declining but my mom thought she would last another week or so. I knew she was dying. But we got test results back from the vet, pinpointing the problem, we got a prescription for her and I rushed to the vet before they closed to pick it up. I tried so hard to give it to Little Bit but she refused it. When I finally got her mouth open her breath had the Death Smell. The smell that Jan had.

Alone, in the quiet of the night, Little Bits died in my arms. I felt her body go limp, saw the light leave her eyes, heard her last tiny meows. I held her for a long time.

They were hard months. I barely even showered, I didn’t have clean clothes, and worst of all I forgot to take care of my animals. My betta’s fin rot was suddenly worse. I tried everything I knew to medicate him. He died. Was it a month ago already?

Depressed and disgustingly unhygienic, I got a UTI. I’ve had them before. Easy fix if you figure out what’s wrong before you go crazy, and I did figure it out. I took my antibiotics, I got better. But then I was so much worse. It developed into a kidney infection. Again, at the doctor, frightened and in pain. But I got better.

Last week my mom told me she has breast cancer. But the prognosis was good, it was small and they caught it early. It was still scary. I went with her to her doctor appointment this week. Turns out it’s actually further along and is very large. She has to have chemo and probably a mastectomy. My mother was crying; her hair and her breasts so vital to her sense of self. The family consensus is that I will be her primary caretaker. 

My mother was layed off from her job on her birthday, only a few months after she left my father. Since then, she’s been unemployed. She’s run out of unemployment. She makes barely enough money to get by. She can’t afford the cancer treatment, but she has to have it anyway. To help ease the burden she’ll be selling the house my boyfriend and I are living in. My new home, my only sense of safety and security that I’ve had in years. We can’t afford to live anywhere else. 

I am graduating in two months. I should be happy -- I think parts of me am, somewhere. I was planning on taking a BREAK. No school, no work, no responsibilities, just time to get to know myself again. Everything that brings me joy, things I define as myself, have fallen by the wayside in favor of school. Maybe finally some time to breathe, and rest, and be. 

But now I must take care of my mother, I must move, and the only way to survive will be to work. Even working a low-key job that I enjoy has been too much for me, I’m sick of being to tired to think every single day! I cannot just survive anymore. What’s the fucking point if I’m just surviving? When do I get to be a person?? When do I get to live???

I am READY to create and engage with the world! Let me sew and paint and smile and read and collect and care! And I was so close! Just graduate and then I can be there. But maybe it never ends. No I must be a caretaker and a survivor. 

There’s just no fucking hope anymore.

[derangedroyalfae]

Dear family (a “coming out” letter about my transition journey)

Since I could remember, when my child brain could grasp the concept of going to these events for myself, I wanted to wear a tuxedo to my prom and to my wedding. 

It might have started shortly before puberty hit, but I had a huge phase right up until my sophomore or junior year of high school where I detested anything that was girly: ruffles, lace, frills, PINK, reds, skirts, dresses. Don’t get me wrong, I still hate pink, but the other things eventually grew on me when I saw what potential they had. I desperately wanted to wear boy uniforms more than the girl ones when I began private school, but knew I had to settle. 

I remember as a child wanting to play with the boys, I wanted to be their friend and even had a good year and half where I was, but when I lost them to my bully, I thought I could settle for the girls. Something strangely didn’t click when I saw things from a different perspective. We could confide in each other because our parts were physically the same, but I had a hard time seeing eye-to-eye. I suppose the same could be said about boys as well. 

I never knew there were words for it or even a possibility outside of cartoons and anime, but my own stories began to fill up with diverse characters in regards to sexuality and gender long before I had a grasp of my own. “This character can be either gender, sometimes they’re both.” “This character doesn’t have a gender.” Don’t get me started on when I began to create characters representing different aspects of myself and how diverse those people were whilst still baring resemblance to me. 

I never knew. I was too young to slap on a label or knew labels existed and pertained to me. I never knew I had a lot of thoughts that most “little girls” actually didn’t have, especially in private and in my dreams. And whilst I’ll be the first to say: “clothes know no gender,” I can admit that I never knew what they could do to help me feel more like myself in regards to such a topic. I knew I had a hard time feeling content in the role I was playing, but never knew how to say it or if I should. There has ALWAYS been a dual aspect to me, I’ve always loved dual aspects: black and white, angel and demon, half and half, sweet and sour, hyper and mature, sweet and headstrong, masculine and feminine, etc and so-on. 

One day, somewhere around early to midway 2015, during my freshman year of college, I turned to research on the topic of gender. I hadn’t been meaning to look for myself, it was purely for my books and curiosity, but I dare say, lines had began to form around dots. At this point and time, I was well aware and accepting to the idea of transgender people, but hadn’t truly suspected that I could fall under such a category. But then I saw that there was more than the binary of male and female, be you trans or cis. Non-binary. Genderqueer. Genderfluid. Agender (though I knew about this one in high school). There was a whole realm of possibilities, and I felt myself, for once, belonging. I didn’t know anyone else who was one of these, but I clearly wasn’t alone in this identity or it wouldn’t exist. I didn’t instantly slap that patch on, however, and I certainly wasn’t sure about going public with it right away. But I had at least one person I confided in, and they, in turn, confided in me about their own gender dysphoria. If you haven’t figured it out, I am talking about my dear friend, Jewel. I also did tell at least one of my sisters and another member of the family. 

Jewel and I, on the other hand, did go into great detail with each other when we talked about what we could possibly want from physical transitioning. It wasn’t enough to just slap on a label and dress the part. No. That was not just for me, it’d be for everyone else to see the spectacle. The aspects and changes I wanted to do to my body, those were undoubtedly for me. No one else would see or be affected by them, save for my future partner. I immediately said that my uterus had to go. Hysterectomy has been a tab on my phone since my freshman year along side a penile implant. I looked up the different ways it could be done, and if I did indeed want to have bottom surgery, I knew what my options were. I don’t hate being female, I don’t even dislike being female, but it was never about that. It’s not like that. I just never felt like I truly was one and that I could never be happy tying to fit in that role. 

Before the semester was up, I freely and openly identified as gender fluid and was fairly certain where I wanted to go from there. It was time for a test run. I even changed my gender and pronouns on Facebook and other social media (and they’ve remained constant these past five years). I would wear and buy men’s clothes more frequently (as no one would buy them for me and now I was capable of doing it myself) and even would bind my chest and pack a sock where a penis ought to be. I would take snippets of my hair and turn it into facial hair, applying it on with spirit gum and trying to look as accurately as I could. I even came up with a masculine name in the next semester. But it had to be perfect and constructed like ~Maiden~ was. I wanted to still keep my middle name, so I had to be a male Fae. ~Names~ my list consisted of Irish boy names translating over to lord or king. Eventually I realized how perfect ~Li'l King~ was and I owned my place as the “Little King of the Fairies.” How perfect. I was short for a girl and now even shorter of a boy, so little king I was. Since we were living in the North County, most people were generally pretty accepting and chill about it all, especially my peers and classmates. But I never knew how to come out to my family. I reminded myself this was a test run, so perhaps I didn’t really need to say until things got serious. I was worried of being looked down upon and being seen as trying to be trendy or complicated. I wasn’t trying to be special or different, I was just trying to be me. I didn’t know how to explain what I was going through and how I felt, so I felt silence was better. I didn’t know if the older generation would get it, especially when I hear them talk about it on the radio of how they see us. How easy it’s always been to come out about my sexuality, but my gender? Now that was mortifying for seem reason. 

Five years passed, and I never felt wrong or wavering about my identity. I felt more sure of it by the day. I did the research off and on and talked to those who had been doing much better with their lives once they started transition and could finally be themselves both physically and mentally. 

So come August 2018, I decided I was ready to start hormone replacement therapy (HRT). I was tired of applying a beard, I wanted to grow one. I was tired of forcing down my voice and accidentally squeaking to my normal range, I wanted a drop. I was tired of constantly having people look at my face and see me as a female when I clearly wasn’t dressed like one or wanted to be seen as one. When I read that T (testosterone) could negatively affect my cholesterol, I got back on vitamins and tried to maintain it once again. On September 13, 2018 I made an appointment with my primary care, ready to tell her the news. I was told by my fellow trans friends that all they did was go to their primary, tell them they were ready for HRT, got handed a consent form, got their labs done, and voila! I fasted and took a 3hr bus ride from one city to another, paid my $30 copay, brought with me HRT consent forms, and poured out my feelings to this doctor, thinking she was the one person who could help me here. What a joke. “There’s nothing in your files stating you’ve felt this way.” Well, yes, but that’s because I wanted to stop being depressed before I went and did something “drastic.” I’ve waited five years, surely this can’t be seen as an impulse. “Go talk to your psychiatrist.” That’s it? I paid $30, took public transport for 3hrs for a car trip that was less than half an hour, starved myself this morning FOR THAT? I was actually so incredibly crushed. She pretty much told me that she didn’t know what she was doing so I was on my own defenses. She was willing to sign off on referrals, but it would be my responsibility to send them her way. ALRIGHT. Fine. I can do that. 

That same day, I made my psychiatry appointment (though my psychiatrist was on maternity leave so it would be my substitute) and messaged my doctor: 

“I have made an appointment with my psychiatrist for this Monday and been looking into the Endocrinologist with Sutter Health and my insurance in general. I've also been looking at my options for what kind of medical testosterone I'd prefer using, such as AndroGel or Androderm. I just thought I would update you on that and will have my psychiatrist send you any and all possible information as soon as possible regarding this. 

I also wanted to make sure that you were aware that at the moment I am only interested in the hormone part of sex reassignment and not anything to do with any surgical procedures. I am only looking into Hormone Replacement Therapy and have been for at least five years now. 

Thank you for your time toady, I hope to talk to you or an Endocrinologist about this in the near future.”

In case you didn’t know, you ONLY need to talk to a psychiatrist in regards to surgery, not hormones. 

Looking back on the rest of my journey, it feels like a joke that I honestly thought I could trust her to help me. I went to the psychiatrist as I was instructed, and when she took me into her office and noticed the book I was reading “Trans Minds Trans Bodies” she immediately recognized it and told me what a good book it was - there was a glimmer of hope. She asked me the standard questions you’re supposed to when diagnosing someone with gender dysphoria, and of course, o get the label. She felt as though her hands were just a bit tied, as she was not my actual psychiatrist, but she was determined to help me. She looked up the closest hospitals and facilities (all in the North County, go figure) that could help me and wrote down lists of contacts. Immediately she grabbed consent forms for sharing my information and told me that I could contact her for further help. 

I sent this new info to my doctor, hoping she’d follow through with making those referrals as she said she would. I found an endocrinologist at the hospital ma was committed to (you all remember that place, right?) that specialized in HRT who was the closest to us. It was part of Sutter Health so I immediately jumped at the chance to make an appointment with her. How was I to get there aside train, however? Hummingbird and Kitty has my back, both of them putting in a request for the day off. My appointment was made for a Friday on the 30th of November. I told myself this was my fallback, however. I discovered that a North county university offered video and phone appointments, so I wouldn’t even need to go there. I could still get my labs done here and they could send me the prescription. They even took our insurance. All I needed was my primary to refer me. 

But she wasn’t the one contacting me anyone. Every time I tried to message her, it was an office staff who responded, saying that my “request was received, and requires review” from her. I even called my insurance to see if anything was happening in regards to the referrals being sent in. “You need to contact you medical group.” Alright??? So then this baloney of back-and-forth tug-o-war with our insurance and medical group began. “Submit your request to this number” but somehow was the same number I had given them. I was completely out of it for what the hell was going on half the time. It was loops and circles and mazes. Why was it so hard for specifically me?

I even made an appointment with my actual psychiatrist when she came back from maternity leave and asked if she could give me the prescription. She said that she sadly couldn’t, but would do whatever it took to help. She gave me a consent form for sharing information and her business card to give to the endocrinologist. I gave the information for the hospital and the specialist and we went from there. 

I eventually let go the frustration of the North county university, I at least had my November appointment. Well, a week before it was supposed to be, they called me up to push it back another week, so December 7 was the new day. Fortunately, Hummingbird and Kitty could still make it. However, the day or two before, the medical group called and told me “insurance isn’t going to cover this since it’s not the same medical group.” What? But Sutter Health??? “Your Sutter G, this is Sutter E. I’m sorry, you’ll have to pay $150.” FINE. It was a small price to pay to be myself. Whatever it took, is take it. 

It felt a shame that the three of us make our way to the North County for just one little appointment that wouldn’t even be half an hour, so I made plans to meet up with my old friends, Jewel and Usdi, and let them meet my two newer partners.

On Thanksgiving, I came out to any friends and classmates that I want to be officially known as ~Li'l King~ (in fact, I had began introducing myself that way to strangers). I’ve also comes to terms that I want to legally change my name to ~Maiden~-~Li'l King~ Shea Rodenborn, but want to go by ~Li'l King~. Time for a double life. I love ~Maiden~ and the Maiden of the Fairies too much to let go of it, it’s a part of my identity. But I truly have come to a point where I hate being called ~Maiden~ and it actually makes me feel depressed. Even being called aunt is tearing at me. Every time I refer to myself as ~Maiden~, aunt, she, her, miss, I feel my skin crawl. I just have such a huge disconnect and it tugs at my heartstrings in a painful way. I know, it’s hard to get it and can easily be seen as something that was planted in my head, but how can it be when it feels so sincere?

And so, the week after thanksgiving, I went to spend the night at the girls’ place on Thursday so we could leave as soon as possible Friday morning. We made our way out and I was more than beyond ready once again. I knew this doctor wouldn’t try to slight me, but I was nervous since almost everything had been on my own. Whenever chaos hit, I was alone and the only witness. I didn’t want that again. So as a precaution, I asked my girlfriends to sit in with me at the appointment. This endocrinologist gave me the olive branch I was so desperately seeking out. She didn’t have any issues with prescribing me HRT, especially after going through the procedure of diagnosing me with gender dysphoria again. She informed me on everything that could happen with getting on testosterone, the risks, the procedures, the symptoms, but it was all stiff I knew at that point in time. I told her I wanted to try androderm first and my second choice was androgel, since I wasn’t found of the idea of having to put a shot in my butt once a week (the butt part wasn’t what bothered me, it was having to get shots). “I’ll have to see you again in three months.” But I don’t think I can afford to come back if I have to pay $150 again (I hopefully would have my license in March). I began to meekly tell her of the storm I had faced with insurance and my medical group, even if how I called up my insurance the day before to find out one specific insurance and the other weren’t the same thing. “But I’m honestly the closest specialist to you, they HAVE to cover it.” Tell them that. They saw I was looking for an endocrinologist. They don’t have a section for specialist in transgender hormone replacement therapy. She saw the pain and frustration in my eyes, just how beyond done I was, and said that she’d take care of contacting my insurance for me. She sent me on my way and requested for me to do a blood test, which I got done the next day in a nearby city. 

I had checked my medication list and androderm was officially on it. I hadn’t remember the last time I felt so elated. Maybe a well later, I received a letter from the insurance saying that they’re denying Androderm because I should try Androgel first. My endocrinologist was immediately on top of this and let me know that she would send in the request for Androgel. So on December 14th the pharmacy called me to let me know it was ready, and on the 15th picked up my first bottle/pump of liquid testosterone. On December 16th (which can now be known as my Transiversary), I slabbed on my first dosage of andorgel.

Spring 2019 semester, I submitted a form to have my name changed with the school so I appear as ~Li'l King~ to the teachers and faculty. 

I’m still me. I’m less upset about being me, but I’m still me. This isn’t a bad thing, and it was never to hurt anyone. I always hide my “he/him” pronoun badge whenever I see you guys because I didn’t want to confuse you. I know it was secretive and behind people’s back, but it’s because I know how much of a pushover I am. I know how easily I cave in and feel guilty over the most trivial of things. I didn’t know how anyone would react, and I didn’t know if anyone would try to stop me. Tell me it isn’t something I should focus on. And so, it felt less like betrayal if I just didn’t tell you guys as opposed to telling you guys, you guys saying not to do it, and then me doing it anyway. But it really shouldn’t even be in the same playing field with such thoughts. How can something that’s not truly harmful to my physical well being but salvation to my mental well being be seen as betrayal to anyone else. I guess, I was scared of betraying myself too. Though, if we’re being honest, at the end of the day I also didn’t want to be bombarded with questions. I was hoping I could just tell you and you’d accept, no more to be said. 

I know I’m the youngest, I’m often seen as immature and uneducated, and maybe you’re all right in seeing me that way. But I want you all to know: THIS WAS NOT AN IMPULSE. This wasn’t something I did to be “hip” and be down with the times. No one else could have convinced me to do this. I’ve never met a transgendered person who would wish this upon anyone and try to convince someone they’re trans. I WOULDN’T WISH THIS ON ANYONE. I wouldn’t wish being queer of sexuality or gender on anyone because it’s harder than you think. There’s nothing fun or trendy about this. It’s not cute or happy fun times. I am honestly living my life in fear of being hurt for being myself, especially since I live in East County instead of the North County. But I’ve come to terms that I’d rather die being myself than have to live a messy lie where I wouldn’t feel like I was even alive, so I’d rather die. I’d try to change, I’d try to be like everyone else: but it doesn’t work that way. Please understand, that I this isn’t what you hear about on the radio. This is real and true and ME. 

[growingupguidepup]

Adventures in Puppy Raising - Part 2

We worked out a plan that the nights the doctor and I were both scheduled to work I would bring Penny with me. If we had time to fit her in we would, and if not she would get pushed back to the next possible evening. Well, we managed to get her done on the second night we tried. I worked my normal shift from 4:00 pm until midnight, and then we started prepping Penny for surgery. Lucky for Penny, my coworker Angela was also on. Penny absolutely loves her and is very comfortable with her. This made getting Penny prepped a lot easier on her.

When we realized that we would have time to do Penny’s surgery I slipped her an oral anti-anxiety medication to help her relax. It was enough to keep Penny relaxed enough for me to give her an injectable sedative and pain medication combo—we do this with all of our patients before surgery. It allows us to keep the level of the gas anesthesia lower during the surgery. It also made it a lot easier for us to draw a blood sample to run and place an IV line and in Penny.

Penny under the influence of a sedative before surgery.

That night I also weighed her, a needed step to be able to calculate appropriate drug doses for her. She was six pounds less than the last time I weighed her. The weight loss made sense, since she had missed a few meals or didn’t finish eating all her food offered in the last few weeks. But it was a little concerning that a still-growing puppy had lost that much weight. It was also another sign that Penny was dealing with more than just teenage rebellion and testing me.

Once her IV was going and we ran a quick blood panel on her we induced her with an injectable anesthetic, placed a breathing tube in her, and maintained her on gas anesthesia. We shaved her belly, scrubbed her, and moved her into our surgery suite.

Penny did really well in surgery and we were able to not only spay her but do a stomach pexy. This pexy is a procedure done to keep her stomach from flipping if she were ever to bloat in the future; if that happened she would need emergency lifesaving surgery. Being a very large breed dog increases the possibility of this condition happening to her. It is still a serious condition, but the treatment for it will not be as invasive, her recovery will be a lot faster, and a lot less expensive. She also had her rear dew claws removed. Not every dog is born with rear dew claws, and unlike front dew claws the rear ones are often not fully attached by bone, but by mostly cartilage. Because of this they tend to be “floppy” and can easily get caught on things and torn. It is a very easy procedure to remove them and many dogs get them removed when they are spayed or neutered. I also took the opportunity while Penny was under anesthesia to X-ray her hips and elbows, just to check for any signs of dysplasia. If Penny is going to be a working service dog, she needs to be clear of any dysplasia. Having German Shepherd in her genes it was a good idea to do a preliminary check, since that breed is prone to both hip and elbow dysplasia. So far Penny is looking clear of both. She will need X-rays again at around two years old to be positive.

Penny on the surgery table as Amie assists the doctor.

Upon removing her uterus, it was discovered that it was slightly enlarged, either still from the false pregnancy or possibly preparing for another heat cycle. Just another indicator of why her behavior was still off and possibly hormone related.

It took about two hours to complete all of Penny’s treatments. She woke up from everything really calmly and she soon went back to sleep comfortably. We kept her on some strong pain medication and I even placed a pain patch that would keep a constant level of pain medication to keep her comfortable for the first few days after surgery. I stayed right next to her, and even took a short nap with her until she was awake enough to realize where she was.

Amie resting next to Penny as she wakes up from her surgery.

A little after 7:00 am I left the clinic to go home and sleep for a few hours as I was scheduled to work again at 3:00 pm. At this point I had been up for almost 24 hours and was getting really tired. I left Penny at the clinic as she was not quite ready to go home with me. She was not really wanting to walk and I didn’t feel comfortable leaving her unsupervised while I slept.

When I arrived back for my shift Penny was very happy to see me. She had been a good girl for the day staff. I was very happy to hear that she wasn’t afraid of them and was very cooperative.

During her surgery recovery we did keep her on a mild anti-anxiety medication to help keep her calm. She needed to stay quiet: no running, jumping, or hard playing, just out to potty only for ten days. This was a little hard for her, but she managed okay. I didn’t trust her not to chew her skin staples out when not directly supervised. The first night home, I put a collar on her to prevent her from getting to her staples and the bandages that were on her back feet. She was terrified by the collar. She sat on her bed frozen and trembling for almost 30 minutes before she would lay down and go to sleep. She did adjust, but she hated the collar. I was able to find her a post-operative suit that would completely cover her spay incision so she couldn’t lick or chew at it. And as long as I kept her rear feet bandaged she left those alone as well. She was a very good patient and allowed me to change her bandages and check her belly daily. She even allowed me to remove all the skin staples by myself when it came time to do so.

When Penny was healed up enough to do short outings and exercise, she was very excited. She was so happy to be able to run and play again. She even seemed excited to go to the store with me again, but she was still constantly looking over her shoulder and uncomfortable with certain people passing us. She still wasn’t herself yet.

Now, it can take multiple weeks and up to multiple months for certain hormones to fully leave the body, so it wasn’t surprising that Penny didn’t go back to her normal self right away. She still seemed a little lost. She was still nervous out in public and refusing to take treats at times. She was still struggling to walk without pulling and being easily distracted.

It was time to see if we could help Penny return to herself again. I decided to try an alternative approach and set Penny up with an appointment with a holistic veterinarian. We met with the new vet and started some herbal supplements to help hormone imbalance and we gave acupuncture a try. But once again she was weighed and she had lost another two pounds in the two and a half weeks since her spay surgery. She had been eating well, but evidently not enough.

We started seeing positive results the day after her first treatment. She started to regain her focus on walks again. She was still easily distracted but able to refocus for the first time in weeks. Along with this treatment plan we did our best to decrease her stress level as well.

Penny relaxing during her acupuncture treatment.

We had plans to travel to the Vancouver Webfest, but Penny wasn’t ready to do a trip like that so we stayed home. I still had the time off work so I took this opportunity to spend it with Penny and see if we could make progress together. This time was well spent. We took short outings every day to different places like malls, different stores, and walks by herself. Each day I saw a little improvement. She was eager to go out, excited to earn food rewards, even looking to do short training sessions, eating all the food offered to her at meal times, refocused, and a lot calmer. I even stopped by my work and my coworkers noticed a difference in her.

We finished Penny’s second acupuncture treatment just before I started writing this blog. She has gained back four of the eight pounds she had lost and is eating great every day. She is still nervous and not trusting of certain people, but it is variable. Some people she will walk right up to and others she will back away from and look over her shoulder until she is sure that they are not following us. This is still a work in progress and we will continue to watch her on this. We have had several very successful outings with Penny so I feel like we are making progress in the right direction with her.

However her future as a service dog is still up in the air as some of her recent behavior has not exactly been service dog caliber. I have always said that puppy raising is a bit of a roller coaster ride with ups and downs. Penny has regressed a lot over the last few months, but sometimes you need to take a few steps backwards to move forward. Going through a heat cycle, false pregnancy, major surgery, and possibly getting ready to go back into a heat cycle has taken its toll on Penny. It’s a lot for any puppy to go through, especially a such a sensitive one like Penny. We are taking things slowly with Penny at the moment and doing everything we can think of to see if we can get her back to the puppy she was before all the changes in her life. Only time will tell if these behavioral changes were caused by the hormone change or if this is the dog she is maturing into or maybe a little of both. We are paying very close attention to what Penny is doing and saying to us and will be working with Brigadoon on making decisions on what is best for her.

For more details on our products and services, please feel free to visit us at: service dog, service dog law, service dog etiquette, service dog puppy raiser, guide dog.

[lymph-biscuit]

Lucky ⭐️

I saw Dr. “Nae Nae"for the first time in a long time yesterday. I missed two previous appointments. I purposely slept through one and mistakenly agreed to attend a manager meeting up in East Orange on the other. So he told me he had to see me yesterday and I wasn’t allowed to cancel.

It was late afternoon. The normally extremely busy office next to the old moon motel was nearly empty of cars and patients. The “Dr.(s) K&K was finally scraped off the door. My aunt was the only one in the waiting room. None of the receptionists recognized me because I wasn’t wearing unnaturally colored plastic hair. However, one of the normal lab nurses was there who could never forget my face..the one with the same birthday as me. She took my vitals. I let her take blood from my arm.. something I would normally fight. She told me that people would die for my veins.. something I get told a lot. Cancer patients normally don’t have nice veins because we are human pin cushions. But I’ve been relentless when it comes to using my port instead of my arm. My arm was always my kryptonite. It was a sensitive area and I knew I wouldn’t have my port forever, but the pet scans and blood tests were.. so why not use it? She didn’t hurt me, shockingly. She chose one closer to my outer arm.

As we waited for Dr. N, my aunt proposed we get a second opinion from a doctor in Manhattan about my hip. I was more than okay with that since I am in debilitating pain that comes and goes. I don’t care who does it at this point. I just want to walk normally. I just want most of the pain to go away. I’ve felt this way since March of ‘16.

Anne walked in before Dr. N. She was dressed in her chemo grown, her mask and gloves. I hugged her. (She is the kindest person in the world and the reason I felt so loved every time I needed to be hydrated or needed zofran at the outpatient chemo infusion room.) she said she was always brought to tears by how good I looked. She dug through the papers on the chart on the door and felt bad when she found my CBC. She knows that I hate being stuck in the arm. She always lets me get my labs with my port even in doctor visits when insurance won’t allow it. She led me into outpatient chemo.. a room I haven’t been in since I was sick. I looked around and instantaneously felt every moment of love I’d ever felt in that room of different colored leather recliner chairs and IV poles.

She cleaned my port for me, and my aunt says to her “I asked her if she wanted it out, and some reason she wants to keep it” I laughed along with my aunt and had my usual defenses. “What if it comes back? It was painful enough the first time!” Anne finished, pulled out the needle and put a bandage on it, and she said something that will probably stay with me.

“Yes. I lot of people choose to keep them. They think of them as their lucky stars. As long as they have them, nothing can happen to them.”

I had never thought of it quite like that. I kept it partially because it might come back, but I never thought I could be keeping it as my lucky talisman to keep it away. And I think in a way, I am.

I’ve been holding onto dark thoughts lately and I didn’t know why. I thought it could be everything I’ve been smoking. I thought I was depressed about everything that had been going on the past couple months. I really didn’t think I feared my cancer coming back… and no one else would think so too.. the way I joke about it.

~lol I guess chemo wasn’t so bad the first time I could do it again. And I sure as hell would not do an allo transplant.~

But the thought of it coming back is terrifying. I am not terrified of chemo or it’s side effects, I am terrified of getting an allogenic transplant. The first one was hard enough. I feel like my energy level has been cut in half. I’ve had colds for months. I can’t go a night without a cancer dream. I can’t go a single day without even mentioning it. I’ve had a double eye infection for months. I have arthritis and constant pain. This procedure and the memories of it are no joke and they are constantly there. Clawing at my face like my cat when he’s hungry.. and it’s constant, and making me crazy.

I hugged Anne holding back tears as she told me she loved me and went back into the room to wait for doctor N. When he finally came in, in his regular dorky fashion, he assured me he would talk to that “dummy doctor B” and tell him to make a move already because I am clinically in remission and not immunocompromised anymore. (Because I had an auto transplant vs an allo) He wrote me a script for a pain medicine he thought had a funny name and sent me on my way…With a date of the next pet scan and of the next appointment that I’ll try not to miss. With or without multicolored plastic hair, but definitely with my lucky star.

[jonathanleesink]

The Eve of Change

Originally posted on January 18, 2018

“We were born with the ability to change someone’s life, don’t ever waste it”

I once read that a good deed loses its value once you tell someone of the deed you did. I have been trying to live this way for the past several months…quietly being a good person. I find a great reward in helping people, I always have. The power of social media I have found is a peculiar thing. For the past six or seven years I have leveraged social media to raise money for worthy causes that I found to be important. It was rewarding and hard work. In 2017 I made the decision to close down my fundraising operations to give back some much needed time to myself and my family. Around the same time I also made the bold decision to delete my Facebook and Twitter accounts. I made this decision for the same reason as closing down Freshcassette; to have more time to myself and to my wonderful family, and to quietly live my life. I miss being in touch with my friends, and seeing photos of people’s families. What I don’t miss is the constant divisiveness on social issues that has inundated everyone’s news feeds. Whether you love or hate Facebook it has proven that it can equally divide us, as it can bring good and kindness to our lives. Just weeks prior to my unplugging from Facebook something wondrous was ignited from the platform that will soon change mine, and nine other lives forever.

At the beginning of October last year I came across a Facebook post my wife, Jamie, had shared from one of her co-workers. The post immediately caught my attention. It contained a photo of a young family consisting of a father, mother, and two young children. The text of the post was written by the wife/mother informing her social network that her husband is on dialysis and is in need of his second kidney transplant. She eloquently described her husband’s situation, what it would mean to be a potential donor, how to get tested to be matched, and if people would kindly share her post. I didn’t know this family. I only knew my wife worked with this man’s wife. I also knew that he had two young children, just like I do. I knew I had to get tested. Why wouldn’t I? He needs a kidney, and I could potentially give one to him. No brainer, right?

After I discussed this with Jamie, I gave the University of Kansas Transplant Center a call. After a 20 minute phone call, I successfully passed the initial phone screen. They inform me that they are going to send me a blood pressure machine and that I need to take my blood pressure two times a day for five days, and then send them my results. I receive the machine the day before I am going out of town for four days to Nashville for work. I take my blood pressure every morning and every evening in my hotel, then on the final day from home. A few days later KU calls to tell me my blood pressure is good, and asks if I can come in to give some blood to determine my blood type and to see if I am a match for the intended recipient.

Another week later I get the phone call I have been waiting on. This phone call will tell me if I am a match to donate my kidney to my new acquaintance. 

“Hi Jon, we got your blood test results back and we were able to confirm your blood type is O+, but unfortunately you are not a match for your intended recipient.”   

Okay, I knew this was likely, but I was still a little disappointed. Through this process I have learned it is very difficult to find two people who match. They look at more than just blood type; they make sure that the two people’s blood will play nice with each other. Apparently ours were two armies of jousting blood cells who would fight ferociously to protect their turf.

Now what? Through all of the testing I knew I wanted to donate a kidney. I really couldn’t believe I hadn’t thought of it earlier. It took me reading a Facebook post to open my eyes. People, lots of people, are hooked up to dialysis machines for hours every week. People are dying everyday waiting on a transplant list. Healthy people have two functioning kidneys, and we only really need one. I have a spare! To me the decision was easy, why would I not donate something I have two of to someone who could die if they don’t have one?

So I tell the nice woman from KU on the phone that I want to donate anyway…to someone that will match me. The next step in the process is to have a daylong appointment at KU Med in Kansas City, KS. We get the appointment scheduled for a couple weeks out. At this point it is mid-November. I started this at the beginning of October. At this marathon appointment I have mini-appointments with:

Living Donor Nurse Coordinator

The lab for lots of blood and urine

Nephrologist (kidney doctor)

Surgeon (the guy who will actually cut me open)

Pharmacist

Dietician

Financial Coordinator

Social Worker

Another social worker

Psychiatrist

Chest x-ray

Pelvic MRI

This all took about ten and half hours in one day. But it was done. A little over a week later I get another phone call from the Nurse Coordinator to inform me that all of the tests they ran on me confirmed I am healthy with no hidden ailments, and I am approved to be a living kidney donor.  

Towards the beginning of December I learned two things.

1) My original intended recipient (from the Facebook post) has a matched donor and is scheduled for surgery right after the New Year. This made me so happy. I would have been somewhat bummed if I gave my kidney away and he still didn’t have one. (Note: surgery was successful for both donor and recipient)

2) The smart folks at the University of Kansas Transplant Center did some crazy algorithmic wizardry and found a way to turn my donation into a ten person kidney transplant chain. Kidney chains are hard to explain in words. This linked article does a good job of it, and there is also the picture below. I would be the donor in the top/left…the one with my name on my shirt ;) Essentially there are five donors and five recipients, all of which will have their surgeries at KU on either January 29th or the 30th.

So this is where I am at right now. For the past month I have patiently been waiting…quietly. Through this whole process I have remained very private about it. I have only really told close family and a handful of people at work. My intent wasn’t to keep this a secret. I just felt strange telling people. I didn’t want to come across as a boastful grand-stander. My very first sentence of this writing expresses the idea of goodness losing its value once it is talked about. This has been what has kept me quiet up to this point. As the days are getting closer and closer to my surgery date, I feel a pressing need to explain to my family and friends why I will be laid up for four to six weeks in recovery. I also feel a responsibility to bring awareness to the need for living kidney donors, or just organ donation in general. Until a few months ago, I never really gave living donation a thought. Not because I didn’t want to, but because it was never brought to my attention. The need for kidney donors is high, but the supply is low. If more people were educated on the process, I truly think more people would be willing to help.

I have been questioned why I would want to give my kidney to a stranger. The only thing that separates a stranger from someone you know is an introduction. Strangers have family and friends that love them, but for one reason or another they don’t have a donor who can donate to them. I am also not of the opinion that someone’s life is less valuable than mine or anyone else’s. We are all universally interconnected, and we need to demonstrate compassion and empathy for each other…regardless of who that person may or may not be. We hear a lot about equality these days. This is equality in its rawest form. There are many “what if” scenarios when contemplating living donation. What if I need my kidney later in life? What if a family member needs a kidney? These are legit concerns, but they are also unknown questions. What I know right now is that on January 29th a patient approved by KU’s transplant team needs a kidney, and I am willing to give her/him one. I am unable to see into the future, so I choose to live in the present.

I wrote this as a way to tell people about my upcoming procedure. What’s ironic is I no longer have a Facebook account to spread the word. I did keep my Instagram account, so maybe a few will see this. I may venture back into the Facebook world at some point. It does have its value, I mean all of this started because of a Facebook post I read. But right now, I am going to continue to enjoy the quiet for a bit longer….

[zeebartels]

First & most importantly –

All my love and thanks to my family, who know how much/little to check in on me and not ask too many/too few questions – DeeDee, Tins, Curtis, Manon, Chants, Casey

Zain – for being my hospital Saviour and just my favourite Pakistani ever! Chad – for trying your best to lie to the parents when KB ask the 2 questions you weren’t allowed to answer truthfully – that is what cousins are for. KB – you are my heroin and without knowing it guided me through this – WWKBD!

Elisha + Nico – for being the best big Sister + Brother a girl could need. There are no words to express how much I love you and appreciate you. Sis! looks like I will live to meet yuh man and you are the best secret keeper.

And, The NHS for existing [you can take all the National Insurance you want from me], King’s College Hospital & my multi-disciplinary team of docs for being absolute stars and sorting me out real quick.

So… it’s been a fucking mad end of this year.

I hate this time of year, it’s never felt happy or joyous and honestly I just see the loneliness in the world in this ‘festive’ season, and now compounded by the loss of my father on Boxing Day 2013 – this time of year I’m always thinking – where is the highest mountain or deepest hidey hole I can find until this is all over. But I think this year has taken the cake!

So I had this cough since end of July, no biggie – it’s a cough.

In October, I was inexplicably breathless speed walking to the boarding gate in Amsterdam with Court.

November 19th, I had the craziest fever – trying to sleep, laying naked in my living room with my windows and sliding doors open in the middle of winter and I still felt I was in Trinidad in midday hot sun.

Chaddy boy came over the next day and seeing I couldn’t say one word without having to catch my breath – emergency doctor’s appointment became mandatory. Now I am the worst patien if I can walk and not screaming in pain – I good, dancer habits die hard. So you know shit was real at this point.

Doc Wedgwood tells me to go directly to A&E 1st thing in the morning, She means – DO NOT pass go, DO NOT collect £200 [which would have been damn handy seeing I just quit my 2nd job for the year on Halloween – that’s another story though].

Of course, I was like “listen, give me some drugs so I stop this violent coughing business and could breathe cause I have a job interview tomorrow that not only do I really want to go to but shit! I need to be able to pay rent in 2018 and there is nothing that will make me move from the best flat in the world.”

We had a bit of a back and forth and this woman was not playing but no chest infection is going to affect my plan. Cue – an interview reschedule and I head to King’s College Hospital bright and early the next morning.

Give some blood and x-ray my chest. Then @ 8:50am the lovely good looking Isiah made everything a little more concerning. He asked me to stick around and started asking me a bunch of questions and after trying to be slick, I got him to eventually admit to me that, “My Chest X-ray is concerning, and I need to go to my GP 1st thing tomorrow to discuss the results”

Fuck me! So not a straightforward​ chest x-ray, not a simple case of a really bad chest infection. But you know I’m on a mission, cause I can’t tell my mother I quit another job this year without having sorted another, so I have interviews to get my ass too​.

Fast Forward to that afternoon, and my Doc Wedgwood left 2 voicemails and emailed me about my early morning results appointment – slight panic set in, so I called in the reinforcements for this appointment – enter Nicholai from Stage Right.

So much changed in a couple sentences that Wednesday morning.

“Your chest x-ray isn’t good. We have to do more tests to fully diagnose, but it’s 1 of 3 things –

Lung cancer [WTF?!?!], Lymphoma [this woman crazy!?!?] or Sarcoidosis [I know she crazy cause only people on House or Greys’ Anatomy have that, and those are TV shows].

Your heart rate is 160 – it’s working too hard and your lymph nodes are inflamed around 400%”

If Nico didn’t say respond – I woulda tell you – that was the most vivid dream I ever had. My Big Brother [as he introduced himself to Doc Wedgwood] asked the sensible questions. I said – how the hell do I tell my mother & sister?!!?

The Bartels Soldier surfaced [I am the child of KB – the Original Gangster] and I needed to make a plan. I started my “I’m dying” folder in my Notes.

What needs doing…

What are the next steps to diagnosis?

Who needs to or should know?

Do I change my pension beneficiaries from my Godchildren​ to my mother and sister [the original plan of them being gone by the time I die may not be the same]?

If it’s a cancer – do I do the fucked up chemo thing or just make sure I enjoy the rest of my time?

Sweet! I lost 10lbs in 2 weeks and I didn’t even make an effort – this could definitely be a good thing!!

Who needs access to my business if shit goes downhill from here.

Answers…

Kings’ College Chest Clinic will call me with my next appointments and instructions

Nico [he was there], Elisha [she’s my person], Chaddy [he knows something is up]. KB + the rest will know when I know what is what

Diagnosis 1st then change beneficiaries if need be

Stage 1 – we will try ah ting & KB will have to come and mind her chile in London. Late Stage 2 and beyond – I’mma just ride this out and see what happens

I have 50lbs I need to lose and hate exercising so this is a real good thing & I’m going to ride this train as much as I can [so far -20lbs + counting in the last month]

Elisha – all of it. Nico – my hospital details.

  So here is what followed:

My symptoms got worse –

I can’t walk 1 flight of stairs without being winded, I have to plan all my journeys around tube stations that have escalators and leave enough time to catch my breath before I have to speak to someone. And keep those to a bare minimum

Talking too much is difficult – not a problem for me, I’m not the biggest fan of people

Eating is tiring and takes my breath away – so most things become blended, good thing I had a bunch of already made frozen soup

I have violent coughing episodes that make anyone in my vicinity think I’m dying from the plague – They just gonna have to deal with that

My ribs are sore from all the coughing, so inhaling is painful

No matter how much water I drink (we are talking 3-4 litres a day) I still wake up at least 4 times every night coughing because my throat is so dry

I started sleeping on top of towels so my bed doesn’t get soaked from my night sweats

I decided on a hospital uniform – my fav GAP grey sweatpants & large quilted super cosy GAP jumper & NikexLiberty Air Max 90’s

Another 3 blood tests – 1 of which I had to tell a very fass phlebotomist about herself and that I do not need a husband nor define myself by the presence of a man & I still don’t know my blood type

A CT Scan – Yes you really do feel like you’ve pee’d yourself in your swimsuit and that cosy warmth stays with you for a couple seconds

A result appointments that only said more tests to come – Doc Turner didn’t seem too​ impressed to hear about my “I’m Dying” folder and whatever other snarky comments I  made

A bronchoscopy – My body was not happy about the invasion and started bucking like I was possessed and thus a punctured lung (more Grey’s Anatomy​y drama), I woke up, or more specifically, regained memory whilst in mid sentence to the nurse.

A week later – I found a bunch of druggie selfies and pics of bloody liquids [I assume came from me], and videos of my canula removal – no memory performing these actions and I doubt the nurse used my phone.

A PET Scan – preceded by a semi breakdown in the waiting room, it kicked off because they go my appointment times wrong, I was real tired and it was my 2nd day of fasting for a procedure. So a very unhappy Zara came to visit shouting for my doctor and threatening to start breaking things led to a coughing episode and was completed by my pee-ing myself while I’m trying to cuss them about their time fuck up. Eventually – they made me radioactive and I went home to my bed.

Ended that day with my cancelling an interview, receiving confirmation of 2 different job offers coming to my inbox within the next couple day and a late evening voicemail from Doc Turner “It’s good news – all things considered. I’ll see you on Monday and we’ll discuss treatment and long-term”

Well thank fuck for that! At least I don’t have to inject my self with poison. I can deal with that – and I can tell KB.

Monday 18th December – Final results appointment + diagnosis =

CONGRATULATIONS!! You’re a winner!!!

You only have a rare autoimmune disease that we don’t know much about but we can give you mood altering weight gaining steroids for symptoms but not much else. We don’t know what causes it, your symptoms can disappear as quickly as they appeared and never reappear, or you could get lung damage. You’ll have to come to the hospital once a month for a full workup.

BTW – how are your eyes feeling? Tired? Warm? Cause this could affect your eyes and your brain too.

Sarcoidosis is now your long time companion.

Gee! Thanks Doc Turner – you’re my hero.

Everything was made right literally in one afternoon, an afternoon where I felt so shitty, couldn’t catch my breath, breathing was painful and my constant coughing made me want to die.

I get to call my mother and tell her – it kinda went like this

[Me -ZB] Hey KB, so I have something to tell you. I quit my job on Halloween… [KB] Oh Shit man Zara! That was 2 months ago [ZB] yeah but I just had 2 offer conversations with 2 companies & I’ll decide on one of them later today, so the job situ is in hand. [KB] mmm hmmm [ZB] Annnnddd, I was being tested for Lung Cancer, Lymphoma & Sarcoidosis, but I only have Sarcoidosis. The best of the 3. [KB] What you saying? [ZB] {Long version as above} [KB] OK, well good thing you there and not here. You are my special child. First it’s your special mouth disease [that is another story – missing some jaw bone]

Ma asked some really good questions and we lime for a lil while on the Skype.

Hardest part done – So now, we sort shit out.

The job is decided on, I’m now the Head of People for a Games Company.

New Meds –

Getting my steroids via inhaler – straight to the lungs, minimise the side effects of steroids in the blood. I know the steroids would have given me a real reason to be fat but the mood swing business, I wasn’t really in the mood for nah!

More Codeine = more constipation – so increase on the prunes and keep on with the greens.

True Story – I’ve been on some form of codeine for the last month – A couple weeks ago, I’m sitting on my toilet for 20 minutes, my legs are numb and I’m crying with frustration cause really I’m a 36 yr old constipated woman, and all I want is for this shit to no longer be a turtle and become a drowned log. I have a coughing episode and all that shit comes barrelling out! The biggest most literal F-ough (fart+cough) that ever existed!! 

So now it’s the road to getting right, I have to be a bridesmaid in Court’s wedding and I’ve got 3 months to be able to breathe while I walk down her aisle.

I’m thrilled that I don’t have to tell my mother + sister that I have cancer at the same time of year we found out and lost my father to cancer.

I get to be on a special list for people with Special Diseases. I call it “exotic”.

I’ll lose the next 30lbs probably without much annoying exercise simply because I have to cut out all inflammatory foods and my body seems to be on that trajectory, once the vaporise steroids don’t get in the way.

And I get to learn more about this odd disease and I won’t be receiving a ridiculous hospital bill.

Everyone is now caught up and I wish you all a brilliant year and all the good things.

2018 is setting up to be a smash hit! I’m pretty excited.

Walk good

xoxo.​

I am a patient on House + Greys’ Anatomy First & most importantly - All my love and thanks to my family, who know how much/little to check in on me and not ask too many/too few questions - DeeDee, Tins, Curtis, Manon, Chants, Casey…