#that my doctor kept insisting she sent a referral for...

[attor]

i think its hilarious that people think my barrier for making doctors appointments is anxiety when its literally just that i will call/try to access results/show up physically to the office over and over again for weeks with no progress bc everyone is doing their job wrong

[wild-moss-art]

hi moss! I hope you are having a good day!! I was wondering if you were willing to share how you convinced a doctor to yeet the uterus :O are you scared about having a major surgery? (I am, as always, having The Thoughts.)

<3 I hope you're having a good day too! It is a long story and kind of personal but I'm happy to share bc I know that it's really difficult to find info on, and if anyone has questions you can feel free to dm or send an ask. Gonna put the story under the cut.

First of all, I live in america and this will all sound very american lol.

In the interest of not burying the lede, my working theory is that I have endometriosis or adenomyosis; these are notoriously difficult to diagnose. Endometriosis is only diagnosable through a laparoscopic surgery and adenomyosis is literally only diagnosable through getting a hysterectomy and having the tissue biopsied. If you don't want a hysterectomy, you can't get an official diagnosis.

Now to the backstory. I think my medical history and experience advocating for myself medically had the most impact on being approved for this procedure.

I have been on hormonal birth control since I was about 13 or 14 practically as soon as I hit puberty I had debilitating periods. I was missing a lot of school and obviously this didn't look good for my parents, so I was put on the pill, and later when I was older I switched to IUDs. The birth control basically put a bandaid on the problem, and the IUD eliminated my period altogether.

Near the beginning of this year, I started to have a lot of pelvic pain that I initially thought was a UTI. I went to the doctor who kept telling me I didn't have the bacteria for a UTI, and basically sent me home with some antibiotics anyway, which didn't help. They did not test for any other problems. I ended up switching doctors due to insurance purposes, but was also put off by the care I'd received.

When I went to the next doctor, they were actually willing to run tests. This doctor and every other doctor I've seen since initially insisted I must have an STD. A panel was run, and I was fully clean for STDs. I was referred to a urogynecology specialist, as my main symptoms at this point were pain(which they do not care about- didnt even put it in my file) and difficulty urinating(this symptom I believe is the only reason I was able to get a referral to a specialist).

While I was waiting for my urogynecology appointment(they were pretty booked out), the pain got worse, like a lot worse. I was also having more and more hormonal symptoms like heavy acne. I was able to move my appointment up but ended up going to the ER. At the ER, I posted about my experience which I can link if you'd like but I'll include the relevant info. The doctor hadn't looked at my age on the file and initially DENIED testing because I was "too young". He came back later and approved it, because he actually looked at my fucking file. From this point on I've been livid and ready to fistfight every doctor Ive seen.

I was at the ER for like 10 hours and got a CT scan, which showed all the inflammation in my uterus and little in my bladder, which was when I began to realize that the bladder issue was just a symptom and not the problem. The original doctor was off duty toward the end of my visit, and the new doctor came in for briefing when she mentioned they needed to run an STD panel. I told her I'd had one about a week ago that was fully negative. She said "I need to go talk to my supervisor."

Ultimately, I was released from the ER with a prescription for extra strength ibuprofen and a referral to a gynecologist. They said my IUD was stabbing me internally, and needed to come out. They did not take it out at the ER.

At this point, it was time for my urogynecology appointment. At the appointment, I told them about my ER visit and asked if they could take my IUD out. They said they didn't really do that there, but after I showed them my CT scan results, they did it anyway. I felt a lot better, immediately. They were helpful and awesome, but said that they mostly treat bladder problems, which was clearly not what I had.

I didnt feel fully better though, because hormonal birth control keeps endometriosis and adenomyosis symptoms and pain at bay. The pain has gotten gradually worse, but it's not longer quite as sharp and stabbing. I've been doing a lot of research about these conditions thanks to a helpful tumblr mutual, and I believe I have adenomysis. I'm not sure whether I have endometriosis.

I followed up on the gynecology referral from the er; I am really happy with this clinic so far. They are the ones that offered the hysterectomy. In my initial appointment, I mentioned that I was not on birth control and wanted to be sterilized. They asked if I wanted birth control in the meantime. I said no(I believe this helped).

(as an aside. Another reason I believe I was offered what I was is that I am married. When I listed my partner as an emergency contact, they specifically mentioned that I did not take his last name. I believe this says something about our relationship to doctors. I know often they will ask for the husband's permission in this scenario; however, they did not even bring him up beyond the last name thing.)

When I met with the doctor for a tubal ligation consult, we talked a bit about the procedure and what other symptoms I was having. I also got an ultrasound that showed inflammation in my uterus(as well as a medium sized cyst on my ovary. lmao). He said the tubal ligation would not help my other symptoms. When I mentioned my CT scan, he actually left to go look at it, returned and immediately asked if I wanted kids. When I said no, he told me he could give me a hysterectomy.

We went over some details; just a hysterectomy is a pretty non invasive procedure and doesn't even require an incision. He mentioned that it may or may not fix the whole problem(it would fix adenomyosis which only affects the uterus, not endometriosis which affects other organs) but that it's pretty complicated to remove the ovaries because it's a more invasive procedure and basically I'd have to be on hormones to simulate menopause for a really long time(I'm only 27). So that is an option, but it's better to just see if the hysterectomy fixes my problems.

The surgery is in 10 days from now and I have my intake consult on tuesday. I plan to update cause again, I know not a lot of people talk about these experiences and it would have really helped me to have known more going in. I really cant wait, I've basically been bedridden, cant exercise, can't stand for long periods of time, not much at all. I'm lucky my livelihood is sitting on my couch drawing.

Finally, I believe that it is possible that they wanted to sterilize me due to my mental health history. I am in ongoing treatment for my mental health, and have particular diagnoses that I do not disclose publicly. You can message me if you'd like to know this information.

[im-immortal]

Fandom Challenge - post a line from your WIP

I’m gonna be self-indulgent and post a long “line” lol

From Carol’s chapter in my upcoming fic, Pompeii:

Carol sighed. Exasperated. “Again… with the bullshit.”

“It’s not bullshit,” he insisted. “I’m not saying you’re crazy. All I’m saying is, you can’t expect anyone else to be willing to-to—well…” He hesitated, searching for the right words. The right tone. “Trying to reconnect with your fellow survivors… it could be extremely harmful. At this point in time. And I’m speaking from experience. Just between you and me… my wife tried to track down the ones she claims to have lost. Tried to find the people she was so sure could remember everything she remembers. But none of them recognized her. The trauma of the rejection sent her into a downward spiral.”

Because all her people died, Carol thought. Mine didn’t.

But she didn’t speak. She kept her mouth in a tight line.

Dr. Chow heaved a sad sigh and concluded, “I don’t want to see that happen to you, Carol. I know that you’re strong. You’ve already taken the most difficult steps towards progress. But there is… a lot farther to go. After this. And there are so many obstacles that could set you back.”

She shook her head and shut her eyes, and let the silence settle over the small office.

She could hear him swallowing thickly. At a loss for words.

Then she spoke softly. Almost to herself. She didn’t even care if he was listening anymore. “Sometimes, I’m almost convinced that this is the afterlife. That I had to fight my way through a decade of trauma and loss. As punishment for being so weak. For failing my daughter. And now that I’m dead, I’m being punished all over again. In a whole new way. Because I just… kept failing.”

She paused. Opened her eyes. Saw the doctor staring across the desk at her with a very concerned expression on his face.

Then she asked, “Would you tell me?”

He arched an eyebrow. Hesitated. “Tell you what?”

“If I was dead. If this was the afterlife. Or if it was… Hell.”

He quickly looked away, down at his hands and the papers beneath them. He fumbled around for a pen and notepad, and when he found them, he cleared his throat and began jotting something down. She could’ve swore she saw his hands trembling.

“Listen… I don’t think I’m entirely qualified to be handling a case like yours. So I’m gonna give you a referral for a very highly-esteemed therapist—we went to college together, he’s much smarter than me.” Dr. Chow ripped off the little square piece of paper and held it out for Carol to take. “You give him a call, set up an appointment. I’ll fax your file over tonight.”

[avoidingadvice]

So for a number of months I was seeing a mental health counselor at the local hospital as part of the community health program (so for free) and I stopped seeing her once covid happened because we had a couple phone appointments, the last of which was all of 10 minutes, and she told me to book appointments if I needed to. I never did because I felt pretty dismissed after that last one. I have had a pretty horrendous year and could have really used being able to talk to her every other week. Although she had refused to refer me to a psychiatrist for my anxiety because she said she didn't believe in medication. Weird thing for a mental health professional to say, but whatever.

I went to my doctor recently and asked for a referral to a psychiatrist again because I want to be screened for ADHD. He told me he doesn't usually do that kind of referral and the mental health workers do, so he sent me to a different counselor. I talked to her for an hour and a half on the phone. She dismissed everything I said to her and told me to make a schedule, try harder, reward myself for getting things done, etc. She basically gave me all the advice I've already heard and tried and failed with. She had no knowledge of ADHD in adults vs children. She kept referring to children she's worked with. She told me fatigue couldn't be ADHD and that people with ADHD actually have too much energy. Despite that there is inattentive ADHD and fatigue is very much a symptom. This left me frustrated.

I then went through the free counseling services offered through my university. The counselor I have been matched with there has more or less said the same things to me, dismissing everything I'm saying and telling me to change my way of thinking. He told me to speak my mind so I did and I was very insistent in my reply and I was not gentle.

Everyone I speak to seems very quick to tell me I'm wrong, but not say why. I give all kinds of evidence to back up what I'm saying and they just tell me I'm wrong. Also my new counselor implied that ADHD wasn't real.

So I guess I'm going to have to write a report with citations and sources and hand it to my doctor. Can't believe I have to do fucking homework just to convince my doctor to give me a referral to a psychiatrist.

[ladyofpurple]

here it is: the post Literally no one was waiting for. i'd put it under a read more thing but i'm on mobile and can't be assed to get out of bed so fuck it. we air our dirty laundry on main for the world to see like men.

so waaay back in february or something, i started seeing a psychologist again. i'd been seeing a psychologist for a while last year, but she had a private practice and got too expensive over time, so i had to stop. now, however, i finally got a referral to the public mental health offices in my county. which is nice, because norway has this neat thing that means when you go to the doctor, public health care facilities, refill prescriptions for medications you have to take daily, etc, the money you spend on those things gets recorded and after you've spent like $260, you get a free card that gets logged into your medical records and you don't have to pay for any of those things for the rest of the year.

anyway, i mentioned a couple of years back that i finally got put on antidepressants for the first time. they helped a lot, but then i just... stopped taking them. there wasn't a reason, really. i just forgot to take them one week when i was stuck in bed with a headcold, and then it was hard to get back in the habit again. i tried to get back on them off and on for a long time, but i'd inevitably just forget again. until, like, i wanna say november/early december last year? i started taking them again. there were still some slip-ups every now and then, but for the most part i took them almost every day. any gaps were no longer than two, maybe three days at the most, and those gaps were maybe once a month or so on average. averages aren't really useful in this context, but i hope you get the idea.

anyway, i finally convinced my doctor that, no, seriously, i really need to see a psychologist, i've always needed to see psychologists my whole life, seeing psychologists help me, i can't afford a private psychologist so i need a public one, and after a lot of begging and insisting on my end and a lot of hemming and hawing on her end she finally agreed to refer me. except she forgot to actually send the email she'd been typing in front of me, and then she quit, so there was a lot of confusion and time spent sorting things out until i got my first appointment.

i didn't like my psychologist at first. she was way older than i'm usually comfortable with (that's a personal me-problem that i know is irrational, and i'm not gonna go into the why but yes i'm working on it), and very blunt in an exasperated sort of way. she made me angry sometimes. she made me feel like i wasn't trying hard enough. but she helped me get shit done, so i guess she was doing something right.

in june she called in a psychiatrist to help adjust my medications, so i started taking zoloft in addition to the other medication (remeron, aka mirtazapine) that i was already taking. the mirtazapine was helping with my depression, but my anxiety was still pretty bad. the zoloft helped.

by my second appointment with my psychologist, she asked me whether i could have adhd, or if there was a history of it in my family. now, i have a lot of family with adhd (how closely related we are by blood is a bit of a mystery to me, my family tree is more like an overgrown hedge and who knows who fits where), and my grandma used to joke that the women in our family "all have a little bit of that adhd brain in us", but as far as i knew, nobody in my immediate, direct bloodline had such a diagnosis. i had my suspicions about myself, of course — i knew that not every focus or attention related problem necessarily has a specific attention disorder source, but i also knew that what i was experiencing couldn't be "normal," in the sense that if i walked into a room with 100 people in it, 86 of those people wouldn't necessarily look at a list of my symptoms and go "oh same hat." i've had add on my about me for a while now. maybe that was silly of me; i hadn't been diagnosed with it, and what i knew about the specifics of it were picked up piecemeal off the internet. you know, that super-reliable place where everyone is honest and factual all the time?

anyway, this began the process of investigating the merits of such a potential diagnosis. research was begun. questionnaires were taken. my mom was invited to one of my sessions, in which she revealed that, oh yeah, bee tee dubs, she's always suspected i have adhd. did she mention that she has also apparently always suspected ocd and that i'm autistic? no? whoops, well, she has now.

end of june i was referred to the neuropsychologist devision of the public health care place. over the course of a little over 6 weeks i went in for 2 interviews, in which i answered several questionnaires, talked about my life and childhood and traumas and what my mom had told me about her pregnancy and labor, every possible symptom i'd ever had, and was sent home with even *more* questionnaries. in addition to these, i went in for two rounds of "testing," in which i was tested on my memory, pattern recognition, reaction time, impulse control, and probably a dozen other things. i was nervous. it was exhausting. i wanted answers but was terrified of what those answers would be.

end of august, my mom came with me for the big reveal. and guess what? she was right. primary diagnosis: adhd, special emphasis on the attention deficit part. bonus diagnosis: asperger syndrome. surprise! i'm autistic, i guess.

it was hard to come to terms with. which sounds really silly, since i wouldn't have even been taking those tests if i didn't think the outcome was a possibility. and it's not like the diagnoses were surprising either. the adhd part was easier to accept, mostly because i already felt pretty confident i had it. but the asperger diagnosis was harder. having to unlearn all those ingrained ableist stereotypes and social stigmas is hard, especially when you had some you didn't even realize were there. it's very surreal to think a thought and be like "no, wait, i do that. that joke is about me." it's a very surreal and slightly upsetting experience to realize how biased you are as general rule, but especially about a facet of your own identity you weren't aware of. and the feeling of everything and nothing changing all at once. i've always been like this. a doctor telling me i have two cognitive/developmental disabilities isn't an event that magically gave me these disabilities. my brain has always worked like this. the only difference between me now and me a year ago is that i have an official, medical reason for Why now.

that's another thing: coming to terms with the idea of being "developmentally disabled." it's not like i'm suddenly a different person — i have to constantly remind myself that my brain has always been like this. but having a piece of paper confirming that i am legally entitled to special allowances in the workplace or at school because i have not one, but two "disabilities" is absolutely buckwild to me.

it makes me reevaluate my life and my past. how many situations did i make worse because i did not have the capacity or knowledge about how my own brain works to self-reflect? was i high-functioning in the past because life was simpler? was it because i subconsciously had a better handle on what works for me and what doesn't, and somewhere along the way i lost that? or was it simply because i didn't have the option to be anything other than high-functioning? it's confusing.

i also lost my spot at college. i can still reapply next year if i want, but at least now i know why i was failing out lmao

anyway, by my birthday in september we started the process of adjusting my medication again. upping my zoloft, getting me off remeron, and as of 6 weeks ago or so, beginning ritalin.

it was a rocky start, but i'm up to 60mg now. two pills in the morning, one in the afternoon. i have a goddamn alarm for 8am every day, even weekends. my sleeping is still wonky, but at least im genuinely tired by 8pm every night. the psychiatrist still wants me to try melatonin for a month (even though i told her multiple times it has never worked for me, and my problem has never been "i'm not sleepy enough"), so i'm on a whopping 2mg of melatonin for the next 30 days. norwegians are fucking WEIRD about melatonin, don't even get me started.

a slightly unexpected side-effect (on my end) of these medication changes: remeron made me gain weight. like, a lot of weight. and i was constantly hungry all the time, overeating to ridiculous amounts. why did nobody ever tell me that weight gain and metabolism changes are a side-effect of anti-depressants? i was more active this summer than i'd been in, like, three years and i just got fatter. which was incomvenient because i kept outgrowing my clothes. anyway, a side effect of ritalin is a loss of appetite and general weight loss. the combination of regularly taking ritalin and dropping remeron entirely? i eat a fraction of what i used to before, i've almost entirely stopped snacking, and i've lost 15 lbs in less than a month. i've already noticed my face is slightly slimmer now. maybe by christmas i'll be able to fit into my old tshirts again.

anyway, my psychologist quit, so i have a new one now. i've only seen her a few times, but she's veeeery different from my old one. i can't decide if i like her or not.

in the middle of all this, i've been going to the social security office as well to kind of get some of my own money, possibly help me get a job at some point in the future. my caseworker is super nice. if she's over 30 i'd be shocked. i relate to her really well, she's very helpful and understanding, and she's very patient with me and my bullshit. she's the kind of person where if we met at a party or something we could probably hang out.

anyway, she's helped me get out of the house sometimes. she introduced me to this youth club volunteer group thing called the fountain house, designed for young people who've dealt with or are currently dealing with mental illnesses and such. i hung out there yesterday and the day before and did some basic office work. it's nice. and then there's a work placement place that can either give you a job on site in one of their four departments, or help you get a job at an actual business elsewhere with more support and leniency than you might get if they just hired you off the street. i'd start in their second hand store. they clean and restore all donations they recieve, and they're super fucking cheap. i treated myself to my literal lifelong dream of owning a vintage typewriter (!!!!!) yesterday, because it's almost christmas and goddammit, i've been doing so much shit the past couple of months i deserve it. do i have space for it? not really. do i have a plan on what to use it for? no. was it heavy and miserable trekking through the snow and rain yesterday back and forth? was it worth the backache in the morning? fuck yeah it was.

a fucking lot of things are happening all at once. diagnoses, medications, lifestyle changes, work placement, social clubs, dealing with bureaucracies on all sides just so i can feel like a person again, not to mention juggling hobbies like writing and drawing and maintaining my irl friendships. i'm getting as many balls rolling as i can while i have the opportunity and mental/emotional capacity to, but i'm worried i'll burn out again. i'm stabilizing and slowly building my life back up, but jesus christ it would suck if this stupid house of cards collapsed again. but i'm tentatively optimistic. who knows, maybe it's not to late to course-correct my mistakes.

so long story short, that's why i've barely been active on tumblr for months. that's why i haven't been writing, drawing, or reading fic. it's coming along, but it's slow.

i guess the most important thing is that it's coming along at all.

[msoutherngirl-blog]

Transverse Myelitis

This past winter, February to be precise is when my symptoms began and I knew without a doubt something was terribly wrong. It started out as stiffness in my knees and progressed over the next week to my calves, then my feet and thighs. It was terrifying trying to continue to function that way, but I have bills to pay the same as everyone else. I couldn’t not go into work, it was not an option. For several weeks I suffered through it assuming it was a pinched nerve, taking ibuprofen and trying to tough it out. Nothing was getting better.

After two months nearly had passed of living this way I broke down and made an appointment to see my Doctor. I wasn’t even sure that I should drive myself at that point as I could no longer feel my feet even on the pavement much less a gas or brake pedal. My parents came to get me, thankfully they live close and I was able to start the slow process of taking care of that ‘pinched nerve’.

My primary care physician referred me to a neurologist here in the small town I live in and wanted me seen right away so a few days later, parents in tow, I went to the appointment that did nothing but make me angry. You see I am not a barbie doll, not afraid of a cheeseburger, however, I had no idea what was coming next. Once called back and in this ‘room’ a term we will use loosely since it looked more like a closet to me, to be honest, He took one look at me and even before attempting to do a TENS type electrode nerve test on me, he stated that I should go home, lose a hundred pounds and come back then to be seen. First, I wasn’t sent to see him regarding my weight. Second, I have a TENS unit at home that I use for arthritis in my knees weekly and have never had a single issue feeling it. I was furious. So was my mother who was in the room with me at the time. Needless to say, we walked out, as we did I told my mother that if I got a bill from him I’d march it right back in there and feed it to him. What can I say, he pissed me off?

*My angry face*

My mother had an appointment of her own a day or two later with our family doctor and told him what happened when he asked about the referral. He was not in the least happy either and promptly referred me to an orthopedist. I made calls for that specialist and as he would not be in my town for a good month plus, I made an appointment to go see him in Huntsville, Alabama. After a few minutes chatting and checking my balance etc, he ordered my first MRI. At LAST, I thought I was getting somewhere. Maybe this time I wouldn’t have to fight for my own well being?  The first MRI was for the lumbar spine as it was assumed that after the Xrays came back showing no pinched nerve perhaps there was a disc or something going on. Oh boy, was I in for a party!

Now let me preface this with - Read it ALL - not just my initial experience but the whole MRI journey. I have often referred to it as MRI Hell. The first MRI was to be done in my local hospital. Simple enough I thought, the machine was weight limited at 350 pounds, plenty past my personal weight so no problem! Or at least that is what I thought. We arrived at the hospital nice and early, filled out all my paperwork, and waited patiently for them to call me back. I walked back with the technician chatting a little as we made our way into the room and there it was. The tiny opening they claimed would house a person up to 350 pounds. Ummm only if they are seven feet tall. That thing was tiny. I thought I am here, let’s suck it up and get this over with though, so I tried. I lay on the table,  pressed my arms as close to my body as they would go and as she began sliding me into it my shoulders hit the opening. It was like being pressed into a sausage skin. I pressed the little panic button and she answered over the intercom as if everything looked just peachy. “Are you okay?” she asked as if she couldn’t SEE me being rolled into that tube. “Nope.” I replied flatly. “Nope, not happening. Get me out of here. There is no way I can lay in here for an hour I can’t move and this isn’t going to work.” I could feel the panic welling up in my chest with every inch further she sent me into that thing. It was horrifying and I am not a big baby.

Out in the sign-in area, the lady there asked if everything was okay and I explained to her the issue. Thank heavens for her because she explained to me that the imaging center at the hospital in Huntsville had the larger bore machines and that perhaps I could be seen there. Thank heavens is all I can say. Not only do they have a nicer facility but they have machines rated to 550 pounds that are far newer and take half the time for the exact same image. Easiest twenty minutes I have ever spent as a burrito. It would not be the only, however.

Once the images were ready, I went back for my follow up with the spinal doctor only to hear him tell me that there was nothing there. All was well and the issue must have resolved itself. ‘Since I wasn’t having pain, only complete numbness SURELY there couldn’t be anything wrong with me...’ Right? WRONG. If you know there is something wrong, if you truly FEEL like your body is not your own, you have to be your own best advocate. Don’t ever let anyone tell you it’s all in your head just because they would like an easy answer to get to their next case. Had I done that, I could be paralyzed right now as I type this. The only pain at that time that I had was a small spot on the lower part of my spine just above my tailbone. It just felt like it was bruised or something. It wasn’t excruciating. I wasn't in tears from it, after all, I was numb. I still stood my ground insisting that something was NOT RIGHT. The numbness had subsided a little after my primary doctor gave me a steroid shot, but it hadn’t cleared up and I knew in my heart this simply was not right. It scared the hell out of me thinking that all these people thought I was crazy and by this time I think even my parents were beginning to wonder if I wasn’t making some of it up to avoid yard work that desperately needed to be done.

Apparently, I pushed enough because he ordered a second MRI. This time it was of the thoracic spine. I knew when the imaging was finished his time that something was there. I was not crazy. When the technician came in to take me out of the machine, she brought another person with her. The two of them were very specific about me taking my time to get up and not allowing me to rush or merely get right up. With the look on her face and the clear empathy for my struggle to get up and lay still for the procedure, I could tell there was something this time that had not been seen before. This time within a couple of hours I got a call from the specialist telling me that he was immediately referring me to a Neurologist and I would be seen in a matter of days.

Now for the scary wake-up. The morning of my Neurology appointment I got up went to work and came home in time for my parents to pick me up and take me once again to Huntsville. I think somewhere in the back of my mind I was still hoping it was something that would be the easy shot and rest and you’re all fixed but that was not to be. We walked in and I filled out my paperwork, when they called me back my mom offered to go with me but I didn’t know of a reason since it seemed like I finally might have an answer. After all of the frustration and tears, all of the struggling for three months by this time, I was finally going to get something done. It felt like relief until the doctor walked in and scrolled through my MRI in detail as I watched. I still don’t recall everything he said as he went through it all so quickly, thoroughly, but quickly. When the words  “immediately admitting” and “hospital” sank into my ears panic set in, it was all I could do to tell him my family was in the lobby and they needed to be in the room.

When they came in, he went through it once more. Your daughter has a large lesion on her spinal cord. This is called Transverse Myelitis, it is nothing to leave or put off on treating. One of the larger ones(lesions) I have seen. This is usually seen in people who have Multiple Sclerosis. She needs to be admitted to the hospital today for 5 days of high dose steroids and rounds of testing. He continued about a spinal tap, blood work, a number of other things and the only thing I could think about was my dog at home. How Buddy would never understand if I simply disappeared and I burst into tears. In all of this, my first thought was for my sweet boy at home and how I could not just leave him. Yes, the test listing scared me, but the last time anyone I know was in the hospital for something treatable, was my Aunt. She went in for a simple procedure and they instead punctured her heart which resulted in months in the hospital and her death. I just kept seeing her, I couldn’t stop the tears.

He gave me until the next morning to check into the hospital as he needed to get a room for me on the neurology floor. Which also gave me some time with Buddy who my parents agreed to take home with them while I was in the hospital. Mom even sent me updates and pictures of him which eased it a bit, but since I rescued him, he had never really been away from me his whole life, so it was a bit like handing my child to people he barely knew. He was all set though, dad even made him pancakes.... spoiled much? Okay back to the initial path to my diagnosis.

I was dehydrated, so the IV was not easy. Luckily I had some great nurses while I was there and they took good care of me. For 5 days I was given a full bag of steroids daily which made even water taste bitter. It was in no way pleasant, I can assure you that. I will, however, say the worst part was the spinal tap. I wouldn’t wish that one many people, but let’s be honest... we all have that one person who we wouldn’t mind huh? *chuckles*

On the fourth day of steroids, my doctor came in to check on me as he did almost every day there and said the preliminary spinal fluid test seemed clear but it was still being sent to the Mayo Clinic as that is a requirement for such tests. I was exhausted all of the time. I slept the majority of the time I was in the hospital and more when I came home.  Transverse Myelitis can take anywhere from 6 to 36 months to fully heal once treated. Some people regain all their faculties and others have lasting deficits. It is also an illness that although it is rare affects less than 15,000 people a year, can recur in very rare cases. I hope that I am NEVER that lucky. Once was enough for me to be that scared out of my mind.

[indieviolet]

shadows, chapter six

warning/notes: Not a pretty fic, will discuss sex and alcohol. Also implied self-harm. Lots of angst. Rated a high T, borderline M. I’m not a doctor or healthcare professional so treatment and diagnosis may be wrong.

“Duffy?”

She was sat on the end of the bed, legs crossed, looking at the drip in her hand. She was exhausted, having spent hours in here but at least she was beginning to feel a little better. Not as sick or as light headed either. She knew she didn’t have long left until she was able to go home, not that the hotel was home but she needed a shower and an attempt at sleeping. She looked up and smiled slightly at Alicia.

“Yes Alicia?”

Alicia took a deep breath. “I’m happy to discharge you once the drip has finished. The repeat bloods were okay and your pulse has reduced which is a good sign. It was most likely dehydration that caused the fainting episodes.”

She nodded listening to the doctor. “Why do I feel there is a but coming?”

Alicia smiled sadly, “I’ve... asked for someone from the mental health team to come down and talk to you.”

Hearing that the mental health team were coming to talk to her, panicked her. She wasn’t ill. She was just going through a bit of a tough time but she wasn’t depressed. People like her were never depressed.

“You’ve done what?!”

“I’ve asked for someone from the mental health team to talk to you.”

“You’ve done a referral without my consent?”

“Not a referral as such.” She took out the form from her scrub pocket and handed it to Duffy, “I wanted to discuss the possible of a referral with you before I sent it.”

Duffy reached out and snatched the form from Alicia, “your suggestion that I may need some sort of input from the mental health team is absolutely absurd.”

“It was merely...”

“what? A suggestion? I do not need to see anyone! I’m fine!”

She tore the paper and handed it back to Alicia in four pieces. “I suggest you call off the mental health team or I’ll self-discharge.”

Alicia sighed, why couldn’t Duffy see that she was doing her job and covering every angle. She put the form back in her pocket.

“As your doctor, I believe seeing the mental health team is in your best interests and I stick by my decision. Whether you consent or not to the referral, I do intend on making it.”

Duffy swallowed. Why was she insistent on making things difficult for her? Why was everyone making things difficult for her?

“I want to discharge myself please.”

Alicia sighed and nodded, “I’ll go and get the relevant forms.”

Alicia left the cubicle and Duffy brushed a tear from her cheek which was soon followed by another one. She needed to get away from here. She moved to the edge of the bed and looked down at the drip in her arm. She disconnected the drip and left, heading to the bathroom. The only place she knew she was safe. As soon as she closed the door behind her, she burst into tears and sat on the floor inside the cubicle, hugging her knees tightly.

She didn’t know how long she’d been sat there, crying into her knees. She was tired of this, of fighting a battle with her mind that she never thought she’d ever beat. But she wouldn’t admit she needed help because she was scared. What if she was honest about her feelings and they sectioned her? She couldn’t lose the one thing that had always kept her going, her job. She also couldn’t lose her identity either. She ran her fingernails up and down the top of her thigh before digging her nails into her skin, biting her lip a little. She needed a release and doing this seemed to help. She did it twice, moving her hand away to inspect her work, finding the marks against her skin somehow made her feel much more peaceful. She attempted to do it again when the door to the bathroom opened and there was movement. She stood up, flushed the chain and slid the lock on the cubicle. As she washed her hands, she caught her reflection in the mirror and sighed. How had she got to this point in her life?

Duffy headed back to the cubicle, moving a piece of hair behind her ear. She sat on the edge of the bed, waiting for Alicia to return with the self-discharge forms. It felt like she’d been sat there for ages, fiddling with her hands in her lap, when somebody called her name.

“Lisa Duffin?”

She looked at the female who appeared to be around a similar age, brunette and slightly plump.

“Who wants to know?”

“I’m Elizabeth, I’m a Mental Health Nurse.” She held her hand out. Duffy just looked at Elizabeth’s hand and didn’t take the bait to shake hands.

“Doctor Munroe asked me to come and speak with you today, is that ok?”

Duffy closed her eyes. God, she sounded so patronising. Reopening her eyes, she met the gaze of the woman and replied; “not really.”

“Why not?”

Duffy rolled her eyes. Were mental health nurses always so nosey?

“I have better things to do with my time.”

“Like what?”

Christ. She knew as a nurse there was an element of questioning patients but this was something else entirely.

“Last time I checked, I didn’t have to disclose anything to you. Nor did I have to answer your questions either.”

Wherever Duffy was saying was clearly not being listened to by the woman from the team, “Doctor Munroe tells me that....”

Duffy sighed dramatically, “Doctor Munroe is a lovely Doctor but has no clue what she’s talking about in regards to this situation. She had no right to make a referral without my consent.”

“Can I call you Lisa?”

“Err, no I’d rather you didn’t, thank you.” She paused, “I’d also appreciate it if you left me alone.”

“I’m only here to ask a couple of questions.”

“And you can shove those questions somewhere the sun doesn’t shine.” She responded, “now I won’t tell you again. I do not have anything to say to you, and I’m only going to say this once — go away!”

Elizabeth sighed and stepped away from Duffy and the cubicle. Well, that hadn’t gone to plan. She walked towards the nurses station and smiled sadly at Alicia.

“How did it go?” She asked and Elizabeth laughed gently.

“Basically told me to piss off but in nicer terminology.”

Alicia smiled sadly, “sorry.”

“It’s fine, it comes with the job. All I can do is write that we tried and see if she’ll accept another referral at a later date but I doubt it.”

Alicia nodded, “she’s ok to be discharged?”

“I have no evidence to say that she’s unsafe and a potential risk so yes, she’s safe to be discharged.” Elizabeth smiled, “I’ll see you later, no doubt our paths will cross again, sooner rather than later.” 

[crispturquoisewater]

Another day, another battle...

I constantly find myself astounded at the gaslighting that goes on from the doctors at my surgery. It’s absolutely shocking, and has recently brought to my mind the podcast ‘Dr Death’. When listening to this podcast, as a naive listener, you think ‘how could this guy possibly get away with this for so long?!’ But it’s simple really, doctors stick together and belittle patients. So, any complaint that is raised is dissolved or made to be the patient’s ‘mosunderstanding’ and is flung carelessly into the ether.

Yesterday, I called the surgery and spoke to one of the new doctors. I had to request repeat blood test (which were already requested on the letter from hospital for the surgery to carry out but of course that doesn’t happen without having to make an appointment). I mentioned that at the weekend, whilst bleeding profusely and in agonising pain in my kidneys, I didn’t know what to do. I received no answer or advice. I said that I’m waiting for a referral for nephrology, but that doctor X had refused to make the referral because he said that it wasn’t his job and that he wanted to make a point that the hospital could not “workload shift”. Immediately, this new doctor jumped in and “explained” (like I’m fucking incompetent) what doctor X meant by his comments, and that actually he was saying that it was quicker for the referral to be done in-house and that it would be easier for me if it was done this way (queue internal scream of utter fucking frustration!).

Firstly, do not patronise me. I am a grown women who, despite everything I am going through, is perfectly competent and reasonable - unlike like the doctors at my practice. Secondly, how unfathomable that a doctor that was not a part of the conversation thinks she has any right to tell me what was actually said(?! Arghhhh!!).

As much as I was infuriated by her blatant attempt to manipulate and dismiss what doctor X had so clearly said (I still find it astonishing that a doctor would try and tell someone else what happened in a conversation that they were not present in - she didn’t even say, ‘I think what he meant was’... just flat out gaslighted me. Nope, no denying it, he called the hospital lazy, was furious that they hadn’t done their job, and was perfectly happy to see his patient suffer in pain, rather than make the referral, in order to prove a point, because they “had to learn”. Narcissism at its finest), I still kept my cool and was polite and explained that he was clear in what he so emphatically and angrily stated. What I wanted to say was, how the hell do you think you know what was said or meant? But I didn’t. She then went on to try and patronise me further by explaining how the system works. I’m very clear on how the system works. For a period of time - not so long ago - I worked in an area of the NHS. I know perfectly well how the system works, but it incredibly concerning that they do not. However, brilliant to know that they are ignoring patients’ requests, and filling their responses with a load of infantile lies.

It may seem like nothing important, but this constant belittling is having a massive affect on my self-worth and self-belief. I try not to let their gaslighting affect me, but it does. Massively. As I am sure is the point. After all, if you continue to feel worthless or lacking in self-confidence, you will stop pushing for the treatment you deserve.

After we’d moved on from that, I asked to be referred to physiotherapy. I’ve got osteoarthritis, and due to severe bone pain and joint swelling, I can barely walk anymore - even around my apartment - and I desperately need someone to look at me, and help me. For a normal surgery, this should be simple. You have a physical problem including joint pain and muscle weakness, you get referred to physio. The fact that I cannot walk properly, and barely at all anymore due to the pain in my feet being so severe, is not normal. I have been reporting worsening bone pain and swollen joints for six months.

At the end of December I insisted on actually being seen in practice because the pain in my lower back and legs was so severe (they still weren’t seeing anyone due to covid). The doctor openly mocked me, asked me no questions about how long id had the pain (even though I’d reported it multiple times), told me that she “does yoga”, like I was lazy and not helping myself (I’d actually started physio of my own from watching videos to try and help myself), and told me that MRIs were SOLELY used if a patient was considering neurosurgery and not for any other reason (🥴 I’d asked for an MRI because the pain in my spine and hips were so bad and had been progressing for four months. I was at the point of not being able to sleep or stand for long properly). Actually (as well as arthritis), what that SEVERE pain turned out to be, was adrenal crisis. My cortisol levels was so low that it was (as the A&E doctor put it), barely existent. And all the symptoms I was reporting were clearly it.

I don’t mind a doctor not knowing something - they clearly are not trained in everything - but please do not mock me or make me out to be a hypochondriac without even looking into it or trying to find out. I came away from that appointment distraught at being belittled, again. Oddly, when I found out that I had adrenal insufficiency, I actually felt vindicated, because I think their attitude towards actually made had started to make me doubt myself.

I truly feel for people who present with traumatic symptoms of mental illness. My symptoms are physical. My bloods are showing issues. Im pissing blood. I’m unable to walk properly or without pain, and yet I am STILL being treated as though I am making the seriousness of this up. I can only imagine how harrowing it must be when there is nothing physical to show. And my heart goes out to you. I’ve spoken to friends who have been mocked or belittled by doctors over their mental health. Im so sorry they do this to you, and us. They are definitely in the wrong profession. The one they must switch to is the Narcissistic House of Disbelief.

Anyhoo, I digress.

So, what should have been a simple request for referral, turned into another battle. The doctor will not refer me until she gets my latest bloods back. And then she will decide if she deems it worthy of me to see a physio. I am in so much pain I can’t describe. How is it that our health is at the mercy of these people?

So, now, almost totally unable to walk because any pressure on my feet is so agonising, and my knees are ankles are so swollen (I’m vegan and eat a healthy diet, this is not excess salt or fats), I am left, yet again, in pain and without a referral.

It’s utterly exasperating. Totally and utterly exasperating, and draining, and mentally, emotionally and physically horrendous, which counteracts my ability to get better, because I end up facing a constant stress from the people that are supposed to help. And stress makes the symptoms worse.

Yesterday, after this agonising call with the doctor, after which I thanked her for her time (despite feeling despair inside - no need for me to be rude, even though the anxiety of each call with that surgery knaws like a ball inside my gut), I had to call the hospital to see if the referral had been made their end (it hasn’t - they simply sent the same letter back to surgery), had to call a different part of the hospital to see if the bloods had been put on the system and then call the blood department to make the booking. That was aside from five other phone calls chasing things. Being ill is a full-time job. And not made easier by doctors with inflated egos who believe they are untouchable.

If you haven’t listened to Dr Death, listen to it. It’s very easy in this situation to believe that this is only happening to you. But it isn’t. My surgery has a 2 star rating. That is testament to the fact that this is not just happening to me. But who will change it? No one, likely. Because complaints are buried. Patients are ignored. And you’re made out to be a complete crazy who somehow, and for reason, wants to be sick.

And why don’t I change? Because my illness is complex, and I don’t have the strength to start again. Also, I don’t believe that any other surgery will be any better. If it’s anything more than a cough and cold, they don’t want to know. Actual doctoring rarely goes on.

I want to finish this blog with a praise to doctors in A&E. because my surgery refuse to look at issues or pay attention to serious problems, it forces patients to go to A&E - because they’re not overstretched and exhausted enough already. Due to having a reaction to my new medication, I ended up there two weeks ago. And the doctors and team were fantastic. I was there seven hours, but I never, ever moan about the wait. These people are inundated with cases. And the reason it took so long is because I had to wait to see a specialist medical team once my bloods had come back. But, throughout, I was treated with respect and dignity, and left feeling assured that I was okay.

Respect and dignity should be a given, however, unfortunately, so often it is not. I do believe some doctors that have been practising for a long time believe themselves to be untouchable, and that is a dangerous precedent to set. But unfortunately, I believe it is one that rings true far often than anyone would like to admit.

Maybe if I was a man, and spoke to them with rage, I would receive a different result. It’s amazing how respect is expected one way, and not the other.

Is the NHS sexist? I think so...

[thebeautifullydisabled]

Back From My Hiatus

I know it must seem pretty irresponsible of me to start a blog one day and go MIA the next. OK, granted it is. But I can promise you it was not intentional. I didn't know how severe my symptoms were as I wrote my first post. Especially because I'm used to being disregarded which I'm sure anyone with a rare disease or chronic illness can relate too. So, I kept typing through the labored breathing, hot flashes, and cold sweats eagerly anticipating pressing the post button. 

I finished feeling both relieved and exhausted when my nonchalant cousin said I looked “off“ and suggested I call the doctor.  I really didn't want to because I've grown accustomed to feeling like crap. It's just a part of life for me. Thanks to DM I’ve grown an extreme tolerance for pain and discomfort. Can you relate? I bet you can!

Anyhow, I did because his concern was concerning. It was after-hours so, I spoke with the on-call MD. I explained my symptoms. They consisted of lightning in my eyes, dysregulated body temperate and blood pressure fluctuations, not to mention labored breathing and chest pressure.  My BP was 144/92 one minute and 90/57 the next. But, he was insistent I had a bug and needed to sleep it off. He was confident I’d feel better in the morning. Disregarded as usual. And off to bed, I went. Miss sleeping or tossing and turning beautifully disabled. 

The next morning, I felt worse but had to go to see one of my countless specialists. I received a call from my PCP's nurse on my way into Endocrinology. She was calling back because my primary had seen I'd called the after hours line and was extremely concerned with my symptoms because she is well versed in my complex medical history. 

Long story short endo refused to see me because my BP was through the roof and I was sent to the ER with a referral from my PCP. I was being treated within minutes for once and admitted within the hour for left brachiocephalic vein catheter-associated thrombosis. I've been struggling with infections and low-grade fevers since not to mention all the other lovely DM symptoms. But this is the perfect time to get back at this because I am officially off blood thinners. Yes!!! Almost like an anniversary of sorts. I can’t believe that actually excites me. LOL.

I stayed away because I had a great deal to overcome and felt increasingly defeated in this vicious cycle of myositis and battles with other autoimmune illnesses. Which is atypical of me because I am a huge optimist. But it's hard to be positive when you're fighting an uphill battle and keep losing your footing. There's a long and bumpy road ahead as I prepare for cataracts surgery and total thyroidectomy, but I've always loved off-roading, so I'll have to make the most of it.

We all have challenges to face. There's a reason we're called Myositis Warriors. What doesn't kill us makes us more resilient and all the wiser. Best of all, although this is byfar the toughest battle of my life, it's made me appreciate it in a way I never thought I could or would. I see beauty in things I'd never considered before and spend my time wisely because I now realize how precious it is.  Stay strong fellow warriors and know, only the strong survive!

[canaryatlaw]

mmmm okay it’s late. today was mixed. most of it was okay, just some bad stuff at the end. same deal for court mornings, had my alarm set for 8:45 when I got a call at like 5:43, luckily I’m pretty good at being coherent on calls when I’ve just been awoken by them, it was just the lawyer on one of the cases that was up, they still have no idea what they’re doing with the hearings, it’s ridiculous. my boss is supposed to have one tomorrow and we have no idea what’s gonna happen because I guess it’s supposed to be over Zoom but I know she’s going to move to have it in person because there’s a ton of evidence and other stuff that would be very difficult over Zoom. the judge we had today was currently booking hearings in December but that was still up in the air, so we decided to just get a status date for setting a hearing. I like the other lawyer, he’s always been very pleasant and polite, he was actually the one I’d spoken to in like September of last year just after starting when I got a file shoved in my face and said my coworker couldn’t make it, so I opened the file and walked upstairs haha so I had pretty much no idea what was going on. and I met him then and he made the comment that he was “the nicest defense attorney you’ll ever meet) and I was just like well my dad is a defense attorney so that’s a pretty high bar, which he thought was hilarious. all of this to say though, since this case got transferred to me in January, I don’t think he’s actually made it to any of the court dates, I’m always getting a call a day or two before and there’s something going on so if I could just cover it, and it’s not a big deal and I really don’t mind doing so because it’s that much easier if I can just get in there, summarize the situation for the judge and ask for what we agreed, so it makes my life that much easier, I just thought it was kind of funny that he’d kept missing them. but oh well. When I logged in I told them I should be the only party on both cases and they said they’d try to get me in early (it seems like they are beginning to give attorneys preference, which was something they said they wouldn’t do at the beginning, so this is definitely good). there was some delay but I got in around 10:30, in and out quickly, easy peasy. I was on the hotline supervisor again today and then again tomorrow, it happens because we usually rotate Mondays and my regular day was Tuesday so I’ve done it before, this will actually be 3 in a row counting Friday too but oh well. not too many calls which was good because I had a lot of work to get done, but this one fucking call I wanted to scream and pull my hair out. without details, it was an elderly client who had a male “friend” helping her with tech and they were both fucking terrible with technology and then he’d insist he did everything right and it must be something on my end, all of which took place twice between submitting the papers and getting on Zoom. after so much shit we finally get to the hearing, the EOP gets granted, we’re almost good to go when this dude gets on the fucking line because he wanted to ask some stupid questions, then ended by telling the judge her laugh (because we were all laughing) reminded him of Kamala Harris, and that was a compliment, then finally got off the line. I was literally face-palming and laughing because this was just insane, and I stayed on the line a few extra seconds just to thank the judge for her patience (i’ve learned judges really appreciate hearing that) and thankfully we were all just laughing at the situation, because if this had happened with the judge two courtrooms over, the judge would’ve like, sent out sheriffs to go arrest him for contempt of court (this is the judge who kicked the defendant off the Zoom call in my one case because he was being an asshole, so I was very glad it ended up with this judge, she’s a criminal judge so I don’t see her much, she’s been on most of the criminal cases I’ve worked on (which is like, 3) and they just cycle the criminal judges through the EOP rotation so we end up in front of criminal judges sometimes, which can be both a bad and a good thing. but anyway, we finally got the damn thing, the dude calls me back and wants to know all this shit and I was like okay it’s in the email and I’m done with this you have no reason to call me again and blah blah and of course at the end he was like well we’ll call if you have any issues which was fucking great to hear. however, when I was entering their info into the system it turned out we had a conflict, so if they call me again I have to be like there’s a conflict and hang up, so I was happy for that at least lol. I finished up some paperwork (like printed out and getting put in envelopes, then went to meet friend for dinner, and this is where the bad part started. I was mostly good getting there which is like, two blocks over from me so not far, but right when we were about to sit down my legs started shaking and for some reason I didn’t just try to grab my cane so I just fell on my butt and I was like I’m totally fine this is nothing and it really wasn’t anything, but I was kinda irritated at myself for not going to grab the cane right away. but yeah, dinner was very nice definitely enjoyed, but afterwards instead of just walking home I made the mistake of walking to Walgreens with friend because I wanted some damn milk to make pudding with, and that was another few blocks over. so we’re walking there and mostly good, fine in the store but they were literally sold out of milk other than the one that’s like special and costs like $5 and I’m not buying that. they did have this really cool thing on their beverage refrigerator things with like a virtual picture of what’s on the inside, I don’t really know how to describe it but it was cool. but yeah, we check out and head home, and that’s where things really start to go downhill. it just started happening again and like I could barely get past the cars trying to get out of the parking lot we were working across, and we ended up having to stop and take a break to see if we could get it calmed down and it did a bit, we weren’t actually far from my apartment (we kinda did a loop so we were back on that side) but between where we were and where apartment was that dang huge intersection, it’s not the same one I had issues in, it’s one block north of it, and it’s so big and there were a lot of cars on the street. and so I start to get up and walk a bit but it just kept coming and I was like yeah there’s no fucking way I’m making it across that intersection, so we went over to the bench on the side of the road and called an uber to drive me like 3 blocks, because I couldn’t make it myself. by the time I got to my building I was mostly okay and able to get up the stairs and get into my apartment without issue, thankfully. at that point I was just more upset than anything else. I just don’t know what to do right now. like sometimes I can tell if it’s going to be bad that day if I go out, but other times it’s more sudden, and like, what am I just going to never leave my apartment or have to be stuck here every time it’s going bad? I can’t do that. and my whole thing with the cane was my effort to be able to walk by myself even when it’s giving me issues and like...it’s just not going to happen. there’s just points where I can’t walk without falling, and I just....I really don’t know. I’m going to call my doctor in the morning, I was already going to do so because I need a referral from her to the other neurologist that specializes in movement disorders, because the one neurologist is a specialist and one specialist can’t refer to another, so it needs to come from my primary care doctor, but the neuro people already clear it and everything so that shouldn’t be an issue. and yeah, when I got home I just kinda chilled and watched Psych until I decided to shower and start getting ready for bed, and now I’m here. I spent way too much time on this post but I guess I needed to get it out, and now I desperately need to go to bed, so I’ll be doing that now. Goodnight babes. Hope your Monday was better than mine. 

[nicochii]

Please help Luisa Omielan

Luisa is a comedian. She’s a wonderful, sweet, funny person who’s going through so much right now and needs help. Her mother was diagnosed with stage 4 stomach cancer, but even that took quite awhile as doctors pushed her off. Along with these piece from Luisa, there is a link for a crowdfunding that is going towards helping Luisa and her mother! You can donate here! And here is her official facebook so you can see updates from her, as well as what has happened to her and her mother. This is copy and pasted from her facebook. “Dear Jeremy Hunt, I hope you don’t mind me sharing this online rather than in writing, but I don’t have time to go the Post Office. I am doing an experiment called ‘Life’ and I would love to get your input for my thesis.Say for example, your mother, or daughter or sister or wife - anyone you love dearly - had a history of stomach cancer in the family. Twelve months ago they developed a simple infection which was treated. But google "H-pylori" and the first thing the internet will tell you is that it's a precursor to stomach cancer.Would you have listened to the GP when your mother, (daughter / sister / wife), kept complaining of eating problems and losing weight but the GP said 'Don’t worry, it's nothing sinister' ?I guess you probably would the first time. Of course you have faith in your doctor, 'they know more than anyone', you think. 'Trust them not Google!' But what if her symptoms kept getting worse? And every time she went back, she kept being told ‘Well it's probably IBS / Indigestion / the gut is reactionary to emotions – you are probably stressed, just go for a swim’. Yes really. Wouldn’t you start to worry, after six times of being sent home with a diagnosis of ‘nothing sinister’ even though the holes in your loved one's belt running out are telling you otherwise?Would you encourage her to go see the GP one more time and just push for a colonoscopy, even though the GP insists its not necessary? Finally she agrees and signs the form for the referral. That’s all is needed, just a tiny little biro squiggle. It’s only a three month waiting list, April 17th, that’s not too bad, not long enough to warrant another appointment but not quick enough to be eased. She can distract herself by doing DIY colonic irrigations in the bathroom, try and get some relief from the constant pain in her tummy. You can buy them really easily on Amazon and they arrive the next day. Then, April 13th you get a phone call to say, its not a colonoscopy, it's just an appointment with a nurse to see if you warrant one. What? But you waited patiently. It's admin you see, Jeremy, it's really important. The NHS has loads of paperwork, it’s 'only there to protect you! 'So April 17th. Ah slight problem, the nurse wont grant a colonoscopy because it's not an urgent case. Your mother, (daughter, sister, wife), starts crying and saying ‘How sick do I have to be?’ the nurse simply replies, with ‘Well there are people who are bleeding and you are not, sooo.’ Would you try and save up cash to get her a private appointment? Scrap that, too late, she is sweating after just one teaspoon of soup. Best take her to A&E. I know I know, this is not an accident and its not an emergency, but the GP’s aren’t listening and sweating to soup is a very strange reaction.The department runs the tests, thank God they keep her overnight. Finally someone is listening.What a relief! Admitted and on the ward, a team of strangers rally around her bed like a swarm of ants as they pull the curtain round to give you the news. It’s inoperable stage 4 stomach and bowel cancer. Would you question them or would you hold on to hope because they have assured you that she only has to wait two more weeks for tests and three more after that for treatment. ‘Don’t worry the tumour wont grow, go home with the feeding tube and some Calpol, any problems, just call 111’. The main one left and the little ones all followed. Well that can’t be that bad then can she Jeremy, if she can wait several weeks and they have only prescribed Calpol? I mean that's what they give to babies. It's 2017, you tell yourself, people survive cancer all the time!She is much happier in her own bed, no noise or bright lights to keep her awake. Just sudden jolts of pain that make her writhe in her pyjamas. Don’t panic, remember what they told you. Call 111 and wait for the radiotherapy appointment.On-call GP comes out and leaves a prescription for liquid morphine. Great. But leaves you with no means of getting into your mother's (daughter's/ sister's /wife) feeding tube. Crap. What do you do? Time is of the essence. You can’t go to her GP, she misdiagnosed and has since sent the wrong prescription FOUR times and to change doctors now would take a week of admin. Instead you have a choice, seek out alternative medicines such as cannabis to help ease her pain or trust the system, just turn the music up so you don't hear her screaming.Okay moving on, its finally time for radiotherapy. Back at the same hospital you see a different doctor, he doesn’t have very good bedside manner and just talks at “Mrs (insert wrong name here) but your mum isn’t very responsive to him. Hardly surprising, he hasn’t got great chat skills. But maybe he has good drug ones?He orders a knock out dose of morphine so she can get in the ambulance and manage the 50 minute journey to treatment.Phew, finally you pull up into the car park! It's going to start getting easier now, because treatment is about to commence. Wait. Scrap that. Radiotherapy annihilates a person's immune system. My bad. Okay so it IS going to get worse, but then it's going to get better. That’s what all the professionals are telling you. SO it's important to listen! At the centre, the new doctors take one look at her and say she's unfit for treatment, send her straight back for palliative care. Who would you be more annoyed at Jeremy, the doctor who drugged her up and sent her here, or the doctors here who are sending her back? What would you do? I guess all you can do is hold her hand in the back of the ambulance as they bluelight her back to hell.Hospitals aren’t nice places and the wards are so understaffed, best if you run in first and clean her room with a wet wipe and get rid of the dirty sheets. Tuck her back into bed, the trip has exhausted her. But as soon as she wakes up, she wails in agony and it's heartbreaking to hear. If you were at home, you could just give her some weed to calm her down, but you can't here so you just press a button and wait. And wait. And wait. Hopefully she will forget this 45 minutes of wailing even if you don’t. Wouldn’t you just want to get her home? Would you resort to tweeting to try and get some help? Or would you just call your mates and ask them to push this one forward to the front of the queue, ask them to be gentle with her, and patient and kind, but speed things up so she has a chance, maybe not at a long life, but at a good quality of one? After all she’s spent a lifetime paying her taxes.Or would you trust the system and do what they all told you. Even though, they got it catastrophically wrong time and time again. Would you quit working to become her fulltime carer because there is not enough care on hand? Would you rub her tummy as the tumour in the bowel slowly eats its way across to the stomach and forms a fistula. A tunnel. Would you hold the sick boat (as she likes to call it) as you watch her bowel empty through her mouth? Would you comfort her while trying to close your eyes and beg for this image to not singe into the depths of your subconscious? You would do everything in your power to help her. Euthanasia is in your power, but you can’t do that. It’s illegal. Its inhumane! This is God's way, they say. The system is in place to protect you. You have to trust the system, I mean this is England, its 2017 for goodness sake! Have you ever heard of ‘Terminal Agitation', Jeremy? It often happens to people who are younger and aren’t meant to die yet. It's where the person's mind is healthy and well but is aware that their body is deteriorating, so as much as they try to fight it it, the battle becomes harder, they get agitated, confused, distressed, pushing loved ones away and trying to pull out tubes that keep them hydrated. When it comes to that point, its kinder to just sedate them. Just keep them very heavily sedated until their heart stops working.It’s difficult though, especially if they have a strong one. So I guess my question is, What would you do if you were in my situation Jeremy? I’m sure you have the money and the connections so its easier to access what you need. If you didn’t though, would you do everything in your power like I have? Would you do everything and anything that you could possibly think of to repay the love and kindness she has spent a short life time showing you? The only currency I have is social media, but maybe that’s not powerful enough to make a change. I would like to think if you were me, you could do more than post a status about it. In fact I guess that’s why I am trying to bring it to your attention, because if you were me, you would have the influence to never let it get this far in the first place.“

[alcesalcesgigas]

I self diagnosed with a bunch of problems to try and solve what was wrong, and it was that insistence that there was something wrong and pushing doctors to help figure it out that I was ever diagnosed with cancer. If I hadn't pushed to see a pain specialist I never would have had the nuclear bone scan that found it.

Same thing happened post-chemo when my period stopped again and I told my oncologists something was wrong and that I thought it was ovarian failure. Facial hair growth? Immune responses to absolutely nothing that causes my skin to hive and all my scar tissue to burn? No period for months and months? Pretty clear signs but ok.

My oncologists (male) kept telling me "no your fertility might come back this happens all the time don't worry!!" Nah I'm going to go ahead and fucking worry about rapid bone loss, lost quality of life, lower life expectancy, early dementia (which I was starting to notice in myself) and other very serious side effects to not producing hormones. Fertility was the least of it. When I, angrily, told an oncologist "fertility is not my concern, the awful side effects like bone loss and dementia are" and he would snap back "I know that, you know what I mean!" Then don't FUCKING WORD IT THAT WAY.

Anyway I went to my GP and told him I wanted to see a gyno. My first referral was lost, and then that gyno sent me to a specialist gyno who is a woman that specializes in post-chemo responses in women in my demographic. I told her what was going on and without having to do anything invasive or touch me at all she said "yeah I'm pretty comfortable saying it's ovarian insufficiency." (She thinks failure is too much of a judgement. She also asked me if fertility was a concern for me and then explained things like consistent birth control use because accidents can still happen without hormone production and if I don't want kids I need to be careful)

So after all that, after everyone saying "don't self diagnose!!" When I've had to self diagnose and solve my own medical problems even in chemo, my self diagnosis was spot on, saved me from much more misery, and my gyno said to me, I shit you not, "good for you for self-advocating. Only you can really know if there's something wrong with you." And I started crying.

So I'm sitting in my rheumatologist's office, and they have this lovely electronic billboard thingy with information. One of the slides condemns self-diagnosis. I can tell you right mcfreakin' now that I wouldn't be sitting here if I hadn't self-diagnosed.

Yeah, I think of self-diagnosis as often the first step to an actual diagnosis for chronic conditions. When you are dealing with something constantly/insistently painful or uncomfortable you are going to notice and look into it, how could you not? You are with your body all day every day, your doctor is with you about 15 minutes. (…If that, let’s be real.) People give you crap if you research your symptoms too much and yet say you are lazy and must not be in that much pain if you don’t look into them enough. Damned if you do, damned if you don’t.