#who does she give me. a FUCKING PULMONOLOGIST

[succubi-tch]

I love when the people at my doctor's office are given one job (scheduling me with the right kind of goddamn doctor that they make me wait months to see) and I get a call the literal day of the appointment telling me "hey someone scheduled you with the wrong kind of doctor. Whoopsie"

[donnerpartyofone]

sometime last september i had a bad cold with an ear infection. a bunch of fluid built up in my ear and never went away. i saw a doctor who suggested it would just disappear on its own, but that it could take three or four months. i took some antibiotics then, which didn’t help. he didn’t seem to consider it a problem. after a couple of months i came back, same deal. he gave me some anti-inflammatory nasal spray and some ear drops, which didn’t help. then i found a new gp and described the problem to her. she stuck her ear thing in my ear, wagged it around, and then just turned around and never discussed it with me in any way.

incidentally, i was seeing that second doctor because i was convinced i was dying from lung cancer. my mother was suddenly diagnosed with stage four lung cancer when she was my age and given a couple of months to live. (she surprised everybody by living for three or four years, which in my estimation was a lot worse than if she had just died right away) i found a gp who specialized in lung disease and explained that i have consistently restricted breathing in one lung that does not fluctuate in any way, and has been going on for a long time. well, my chest x-rays came back clear and i don’t have any other symptoms, so she just put me on some asthma inhalers. i had bad asthma as a kid, and this unceasing one-sided shortness of breath doesn’t resemble that in any way, but my doctor didn’t seem to give a shit about figuring out what was wrong with me as long as the inhalers seemed to be managing the symptoms. i felt like a theme was emerging when i told her about my ear, and she seemed to just look for whatever specific thing she would consider a problem, and when she didn’t see it, she just changed the subject.

so, naturally, i found a new gp. i went because my scripts for my inhalers were running out, and i didn’t want go back to the other doctor to get them renewed. mercifully (i guess although i’m really not dying to keep seeing more and more doctors), my new doctor is sending me for fresh x-rays and referring me to a pulmonologist. i also told her about my ear, and she checked me out and saw all this fluid behind my eardrum. she said this is very common, and might be there “forever”. it could be because of my naturally humongous tonsils, which is a pretty disgusting thing to hear about myself for some reason, or it could be allergy inflammation that’s contributing to the blockage. so the main thing i have to do is stop trying to pop my ear, which i want to do every second of every minute that i’m conscious, because it’s clearly, painfully wearing down my jaw. also, now i get to add an allergy pill to the 23 (24 depending on what’s going on) pills i need to take every day to manage other stuff. 

the “other stuff” is mostly one condition, which is that my system processes copper so poorly that the buildup of this psychoactive metal in my system makes me chronically depressed, anxious, fearful and angry. nutrient therapy is a lot better than being hooked on opiodes...i think? but the number of things i have to take to avoid that is exhausting, and means that i spend an hour or two a day feeling like i’m going to throw up while i digest everything, which isn’t exactly a mood booster.

anyway, my new gp has also referred me to an ENT, which appointment can’t happen soon enough because sometime around 3am yesterday, i developed a loud ringing in the affected ear that will not go away, and by all accounts, might never go away. this is not the first time this week that i was told one of my senses will be permanently impaired for no particularly good reason. a few years ago, i had to have surgery and localized chemotherapy to remove some pathological scar tissue growing across my corneas. it hasn’t come back (although it might), probably thanks in part to the chemo, but now i have a buildup of surgical scar tissue on one eye that is causing glare and spots, and according to my cornea specialist, that’s just the new normal. the few treatments options are considered high risk for little reward, i guess.

depression has a way of casting you as a problematic person in the public eye: someone who is oversensitive, looking for attention, being negative, and refusing to deal with their problems in a mature way (because according to people who don’t really have problems, all problems go away if you just adjust your bad attitude). now, i hate going to the doctor because my experience of autism makes me cry and panic like i’ve been raped if anyone touches me without my specific emotional invitation. also, it’s very hard for me to think of any experience i’ve ever had with a doctor where something was explained to me satisfyingly, or where i got treatment that really worked--as opposed to me just coming out the other end, terrorized and humiliated, sitting there in a puddle of my own various fear fluids thinking, “wait a minute, WHY THE FUCK did i let them do all that random shit to me??” to wit: a couple of years where i submitted myself to a doctor to have core samples regularly, painfully, frighteningly drilled out of my cervix because of some abnormal test results. whatever’s going on COULD be precancerous, i was told. well, what else “could” it be, i asked? they just shrugged, and one day they told me they weren’t seeing the abnormality anymore and they didn’t have to keep mutilating me. so...i could have just been sitting on the couch this whole time? why did i do this, when i don’t even have any particular faith in treatment anyway? but, i keep doing to the doctor(s), because i’ve had it drilled into my head that it’s the “responsible” thing to do, and it will prove to the world that i’m a “positive” person who tries to find “mature” solutions to my problems. that makes it extra frustrating when nothing comes of it, other than the damning confirmation that nothing about me is really working that well, and it’s not going to.

of course, on top of the fact that my problems are not really manageable in any substantial way, there’s the added psychological pressure that comes from people not seeing your problems as problems. exactly one half of my face is affected by rosacea, making it extra obvious that something is wrong with me. having tried everything else that is supposed to manage my symptoms--including two different treatments that are “magic bullets” for 99% of sufferers, both of which made me react so badly that i looked like i’d been attacked by wasps--i decided to take the plunge on my last option, an extremely expensive battery of painful and kind of scary laser treatments. i had the last one this month. i’m not seeing any difference at all, and in fact i’m not sure it didn’t make things worse. no insurance really covers treatment for rosacea because it’s considered a cosmetic problem, even though it results in broken blood vessels and progressive thickening of the skin that anybody would consider a medical problem if they saw it in action. i can already see what’s going on in the mirror, and trying not to notice is not an option.

i realize, as i’m sure many people will be quick to tell me, that i’m actually very lucky. i do not have any “real problems”. i’m performing the basic life problems of a human being just fine. but i have to say, just to stick up for myself, that there is something really special about just having a collection of unrelated problems that just amount to, like, a bunch of bullshit. i have friends who have had, or currently have, really major life challenges--horrifying circumstances or conditions with which they have had to wage a heroic battle. of course i don’t envy them, but at the risk of sounding really incredibly petty, at least they made some kind of sense. the dragon arrives at your door, and it’s cancer, or hiv, or a neurological disorder, or a flesh-and-bone-eating disease; you don your armor and fight the good fight, or prepare to die with dignity, or in the worst case scenario, you just regular-die, but everybody totally understands it as a tragedy. there’s some kind of logic to it all, even if it’s completely unfair and arbitrary in the outing. it’s different when you just have a bunch of bullshit, none of which anybody thinks is a problem individually, and there’s no reason for it. your eye is just kind of shitty and your skin is just kind of shitty and your lung is just kind of shitty and your ear is just kind of shitty and your ovaries are just kind of shitty and your mental health is just kind of shitty (for chronic physiological reasons). so therefore, looking at things is just kind of shitty and having people look at you is just kind of shitty and hearing things is just kind of shitty and really, just being awake and alive is just kind of shitty. and there’s no narrative here, it’s not you versus your virus or you versus your mutating cells or something. it’s just you versus the fact that you’re just, like, kind of a fucking lemon. if your body were a car, you’d get rid of it, and just take the bus from now on. or stop going anywhere altogether.

when i’m not fighting off a violent reaction to my mounting collection of bullshit problems, i’m usually trying to find some meaning to my life. it’s hard to do. i’m not brilliantly intelligent or talented in any way that would make my career into the point of my life. i’m also not going to start a family (which would be a huge challenge for me anyway because of problems with my reproductive system), so that’s out. because of my anhedonia, i can’t really live for pleasure either--a fact which is surely compacted by the way that all of my individual parts seem committed to making any and all sensory input at least sort-of annoying, if not infuriating and claustrophobia-inducing. when it’s just me and my depression, i often think, “god, i really wish i could just achieve something in this life, then all this agonizing would be worth it.” i usually wind up reaffirming that i’m just an ordinary person, i’m not even very good at my hobbies or very knowledgable about my passions, there’s no chance that doing something special with my time on earth is going to save me. but then, of course, there’s my shitty, shitty, shitty physical condition. the only thing i really ever accomplish is preventing myself from screaming.

i realize that many people might want to frame stopping yourself from screaming as an accomplishment in and of itself. when you’re really challenged in life, you have to remember your context. like, one guy might be climbing the corporate ladder, and he has to face the challenge of competition and seizing opportunities and stuff; but when you’re, say, me, not-screaming can be a legitimately equivalent effort that you should be proud of winning at. both my best shrink and my worst shrink have tried to warn me off of comparing myself to others--to noticing, constantly, that compared to pretty much everyone i know i’m really defective, and in fact i’m way behind my peers developmentally because i have to struggle so hard just to get through my fucking day without ruining anything or taking a break for pure suffering. part of the reason to avoid comparing yourself to others is what i was just getting at, that you want to have an authentic sense of your own suffering without using an irrelevant-to-you method of measurement. the other part of it is that you don’t want to delude yourself into thinking that you are the only person who suffers, or that your suffering is the most extreme. my first/worst shrink approached this in a pretty hilarious way: she suggested that maybe ALL of my friends have ALL the same problems as me, they just haven’t mentioned it. first of all, this just shows a real ignorance of how many great complainers i know. but secondly, it suggests a world in which my closest friends have stood by while scars grow over my eyeballs and half my face burns and swells and my ovaries constantly invite painful degrading examinations and threaten cancer and my lung never opens all the way and my ear rings deafeningly et at ad nauseam, and they just...don’t say anything to me. for some reason my dearest companions just don’t feel like offering me support or solidarity or advice from their supposed rich experience, or even venting their own frustrations to an ear they know for a fact is sympathetic, even if it doesn’t hear too well. it’s an extra bizarre idea that still makes me laugh, when i’m not screaming.

now i have to get ready for today’s doctor’s appointment, the fifth of what i think will turn out to be eight this month, not including psychiatric appointments. it’s not for my ear, but i’ll definitely be bringing that up again, because i think i need to add an anti-anxiety prescription to my armory of pills, because i don’t think i’m going to make it through this experience without altering my chemistry until i just don’t give a fuck about anything that happens to me. plus i need to find out if tinnitus is its own thing, or if it is definitely always a symptom of hearing loss (that is, a deteriorating ability to perceive sound, as opposed to an incredibly loud internal sound that you just naturally notice more than other external sounds that you are still technically capable of perceiving). a minute ago, my husband got up and started stalking around our tiny apartment suspiciously. i thought he must have seen a bug, but he’s looking for the source of a weird noise that must be coming from our large mac tower, a couple of feet away. i absolutely cannot hear it at all.

[kaylabliss]

I keep starting a post rambling about my health shit, but for some reason I keep just... Losing track of what I'm saying and going off in twenty directions without completing single thoughts. Since I'm apparently very verbose tonight, I'm going to give it another try.

I started having some major trouble breathing last week. When I finally went to urgent care, we determined that I have a sinus infection that set off my asthma. So I'm on high doses of prednisone and Augmentin. I can tell a difference now that the Augmentin is doing its job.

After the prednisone and Augmentin kicked in, I found... Uh oh, my GERD has been really bad and I hadn't realized it. I always suspected a link between my GERD and asthma anyway, I know it's a "thing," but I decided to get more details. After some research, I discovered that "normal" asthma is usually a problem with exhaling, whereas GERD-related asthma is trouble with inhaling.

I can't seem to find a straight answer on whether GERD asthma is "true" asthma, as in whether it's an issue with the lungs, but it seems like it is. The acid deteriorating the lining of the esophagus and other areas can cause inflammation in the lungs (especially if acid leaks into the lungs, but it doesn't appear that I have had that happen yet), which triggers a chain reaction resulting in asthma. When I got an xray last week, the doctor did note some apparent swelling of the bronchioli. She said that's what she would expect from asthma, except that my O2 sat is perfect.

This would actually explain pretty well why the pulmonologist I went to a few years ago basically concluded "well, I'm not sure if you have asthma, but it seems to be asthma, so just keep taking the asthma medication I guess."

Part of the issue is that I've never been able to satisfactorily explain what I'm feeling when I have these episodes. I finally figured out how to explain it while talking to a med student at urgent care.

"I tend to yawn a lot with these episodes. You know how it feels when you yawn, it peaks, and then there's a feeling of completion as you exhale? I don't get that peak or completion, it just stops in my throat and it doesn't feel like the air has gotten to my lungs."

She seemed to understand exactly how I was feeling when I told her this.

While trying to parse out the GERD-asthma relationship, I ran across another phrase: "laryngopharyngeal reflux." That actually further explains my symptoms, specifically why I always have a sore throat, post-nasal drip, dysphagia, and rhinitis, no matter what I do to ease my sinus symptoms.

What's funny to me is that in a short period of time, all within the same health system that had shared files, I saw a gastroenterologist, a pulmonologist, and an allergist. If they had been providing comprehensive care, I feel that they might have reached the conclusion of LPR. The gastroenterologist diagnosed my GERD based completely on oral history, and did not do any kind of testing or physical exam. He didn't account for the symptoms in other parts of my body at all.

Now that I have different insurance, I plan to set up appointments with doctors who will look at the whole picture, and now I have an idea of what we need to be looking for. If LPR is causing my sinus issues though, the answer is the same: exercise, hydration, and the same diet I should be eating for GERD. A doctor might prescribe a PPI, but after some time on omeprazole, I actually felt sicker than before. I just take ranitidine as needed now, and it seems to work better. I'm considering switching to famotidine during this particular flare to see if it makes a difference.

On top of this, my other aches and pains are getting worse. I do recognize that the amount of weight I've gained is a factor, of course. But it's a catch-22, because in order to exercise and eat right I need to have energy and manage my pain, but I can't have energy and manage my pain without exercise, and I can't even take pain relievers to help ease the transition because NSAIDS set off the GERD and asthma and Tylenol does jack fucking shit.

Tonight I had to walk to the store from my workplace. It's one block, maybe a quarter mile. I can casually walk around a store, fair, convention, etc without a problem... Because normally all I'm carrying is my body and my phone. Add my bag with my medications and my planner, and... Well, by the time I got to the store, my knees were throbbing and I felt like I was being stabbed in the flanks. I had to lean on a cart to get just a few groceries.

It's so frustrating, and I just don't know where to begin to get things straightened out. When I started this Tumblr I lost all kinds of weight, and eating well and exercising seemed effortless. Now it seems downright impossible.

[canaryatlaw]

So, today was, alright. And after the trainwreck that was yesterday, I'm satisfied with alright. Woke up somewhere around 10:25 and got ready, but didn't bother to do make up (lazy and sick) then got a Lyft out to this new doctor. He's out in one of the suburbs, not too far outside the city, but enough that it's a considerable distance that I probably couldn't get to by public transportation alone so I ended up spending a fortune on Lyfts today, but oh well. We got out there in good time and find the office easy enough, fill out some paperwork and get called back. Of course, the first thing they want to do is the lung functioning test that I've done, not exaggerating, completely literal- about 50 times at this point. Like, I've done this test to death. But I was of course interested to see what it would say now that it seemed like my lungs had been pretty severely compromised. So the whole thing is they have you breathe into this mouthpiece thing in and out and then you take a really deep breath and blow it all the way our for as long as you possibly can and its not terribly pleasant. So we do it the first time, and at the end I'm coughing a good amount from the effort and need a minute. So then we do the second one, and after that I straight up could not stop coughing, like I had to sit down and get water because it was that bad. And yet I'm staring at the image on the screen and I know it means my lungs are functioning normally because I've seen that 50 times before. Sigh. So I go to talk to the doctor and I explain my whole complicated medical history (well, not all of it, but the relevant pieces to here. He pretty much straight up rejects the idea that I have asthma or should be treated using asthma medication, which makes sense being that not once in my life have I ever tested positive for asthma (despite being screened about 50 times) and asthma medication generally has no effect on me, although it can help with the cough sometime, but he explained that that's just how the medicine works that it would have that result anyway but it's not doing anything to solve the problem. And I mean, everything he's saying seems to makes hell of a lot of sense so far. So what is this? Well, then we start talking about my acid reflux, and he says that it can cause way more symptoms than just heartburn, and just because you're not getting heartburn doesn't meant your reflux is controlled, and it can be causing other symptoms, including coughing and back drip and all that ever stuff. Huh. So he says for now he wants me to double the acid reflux medication I'm on, and that if I'm in a coughing fit pop a tums, and he gave me a nasal spray as well, saying hopefully we'll see results in 5-7 days and I can call and update him. My symptoms overall did feel better today, though I don't know what to attribute that to, but I was significantly less miserable that yesterday so that was interesting. So, hey, I'm willing to give this a try at this point, a lot of what he said does make sense with my medical history and he does remind me of my old allergist who was always spotting things other doctors totally missed. If none of this works though and we're back at square one, the next step would probably be getting on a plane to NY for a day or two for an emergency consult with my pulmonologist there, because at least he knows me and he knows me case and most importantly, he's successfully treated my symptoms. But I'm hoping we don't have to go there. I'm gonna try to get an appointment with him while I'm home in June for a bit anyway just to check in with things. So yeah, hopefully this will work. Got a Lyft home, got into my apartment with enough time to drop my things then run right back out to physical therapy, that is thankfully only around the corner. It felt like a pretty productive session, lots of shaky muscles which is something that's been happening to me forever now, so maybe that can get fixed here too, that would certainly be nice. I'm just hoping I can remember all the exercise he wants me to do at home now, lol, since he was introducing new ones. Oh well. So that went well. I passed the kosher deli on my way home and stopped in for some matzoh ball soup, because I'm sick and I can, and went home and ate that before heading back out yet again to go downtown. On my way there, I check my email to see that my prof has cancelled our class for tonight because she is sick, but I was already meeting my partner for my oral argument before hand and I had to pick up my prescriptions so it wasn't a big deal. Got off a stop early and grabbed my prescriptions from target, then met my partner in the library and talked things over. It's pretty basic, each of us is taking one argument and going up against the lawyer on the other side about it. I ended up doing the impeachment argument just because I thought that it was stronger due to the 4th amendment principles supporting it (I won't get not what all of that means because believe me, you'll be bored) so I typed up an outline for that that I likely will not take one look at until the oral argument, but oh well. We finished up and left the library, and I had to stop at Starbucks and try this ridiculous unicorn frappuccino because I'm a basic white girl and I've given up fighting this, so hopefully you saw my post about that earlier (and it's rather brilliant Moana pun that I was quite proud of). So that was an interesting experience. It's hard to describe, just kind of sweet and tangy and a bit sour, it's good though. After that I headed home and decided to give myself the rest of the night off because I was tired dammit, so I got some food and turned on my shows, starting with Brooklyn 99 which was hilarious of course. Then I went to the last two episodes of trial and error, which (spoiler alert obviously) I FUCKING KNEW FROM THE BEGINNING THEY WEFE GONNA RIP OFF THE STAIRCASE AND THEY RIPPED THEIR CONCLUSION LITERALLY RIGHT FROM IT lol. I mean it was totally brilliant and it cracked me up that they did that, it was a great move on their part. After that I realized designated survivor was on, so I watched that slightly delayed from real time by about 5-10 minutes. Another solid episode, not quite as good as the last two weeks I think but still quality in all the places it needed to be and did a good job in setting the plot forward. Given the circumstances I get why he wanted to go with the eight Justice Supreme Court, but given our current judicial situation (if you're unaware, we currently have an open seat on the supreme court since Scalia died, so there's not gonna be a tie breaker vote in a close case). And I mean they're right, most cases down come down to a split 5-4 decision, but a lot of crucial ones do. I understand he was trying to get the court up and functioning, and I can see why he did that, but I'd like to see that vacancy filled sooner rather than later, so I hope it's a plot line they follow up on. As far as real life selection of a judge goes, ugh, don't talk to me about it. And yeah, that was pretty much my day. Not too bad overall. I'm tired now though, so I'm going to take my leave and get some sleep. Goodnight babes. Sweet dreams.