7:29am August 4, 2015

My brain refuses to see delirium as 100% meaningless.

One of the things that sucks about being delirious is how little meaning things seem to have some of the time – most of the time, even.  When I’m delirious, it feels like I’m in a world of edges, never reaching any depths, just surfaces, and seeing all kinds of dizzying reflections in the surfaces, with my mind chasing them around in circles, unable to keep up or comprehend anything other than fragments of reality.  It’s a terrible, empty feeling.  And it’s weird because my head is outright cluttered, generally (unless it’s the kind of delirium where everything just fades away, instead of becoming cluttery and hallucinatory) and yet there’s nothing there.  There’s just nothing to anything.  

And after awhile that gets to me.  After awhile I start wondering, is every time that I’m delirious, time wasted, time I’ll never get back, time that’s utterly meaningless in the worst possible way?  Especially when it’s filled with hallucinations and delusions that have nothing to do with reality at all.

And yet every single time I’ve been delirious, I’ve also had moments where instead of too little meaning, suddenly everything drops out from under me, and… well in the comic I made, I represented it with a lioness, but that was a symbolic way of getting at something deeper.  So even though delirium mostly takes me as far away from reality as you can get, there’s also these weird moments where it suddenly takes me towards reality in a huge way that I can’t ignore.

But all of these things, whether they’re about taking my mind towards reality or away from it – they’re about what my mind experiences.  And reality isn’t dependent on whether I notice it at the time or not.  And I continue to exist just as much when I’m totally confused, as I do when I’m not confused at all.  That includes during times that my brain doesn’t even encode memories from.  It doesn’t mean I’m not there, or that what’s happening to me at the time doesn’t matter.

But even with all that – I just get this intense desire to make sure that these parts of my life have some kind of meaning to them, even though everything seems so meaningless so much of the time while they’re going on.  Maybe it’s because of that horrible empty meaningless feeling, that I insist on there being some kind of meaning in sight even then.  I don’t know.  I don’t even know how to say what I’m trying to say.

8 notes

1:42am July 30, 2015

A doctor discovers an important question patients should be asked

madeofpatterns:

specialsomeone212:

madeofpatterns:

dbd-jk:

cranquis:

sketchshoppe:

This patient isn’t usually mine, but today I’m covering for my partner in our family-practice office, so he has been slipped into my schedule.

Reading his chart, I have an ominous feeling that this visit won’t be simple.

A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.

He suffers from both congestive heart failure and renal failure. It’s a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.

Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can’t blame him.

Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.

With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.

After 30 years of practice, I know that I can’t possibly solve this man’s medical conundrum.

A cardiologist and a nephrologist haven’t been able to help him, I reflect,so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… .

Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try.

Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?”

I pause, then look this frail, dignified man in the eye.

“What are your goals for your care?” I ask. “How can I help you?”

The patient’s desire

My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom.

He won’t ask me to fix his kidneys or his heart, I think. He’ll say something noble and poignant: “I’d like to see my great-granddaughter get married next spring,” or “Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.”

His daughter, looking tense, also faces her father and waits.

“I would like to be able to walk without falling,” he says. “Falling is horrible.”

This catches me off guard.

That’s all?

But it makes perfect sense. With challenging medical conditions commanding his caregivers’ attention, something as simple as walking is easily overlooked.

A wonderful geriatric nurse practitioner’s words come to mind: “Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.”

Suddenly I feel that I may be able to help, after all.

“We can order physical therapy — and there’s no need to admit you to the hospital for that,” I suggest, unsure of how this will go over.

He smiles. His daughter sighs with relief.

“He really wants to stay at home,” she says matter-of-factly.

As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.

“I know that you’ve decided against dialysis, and I can understand your decision,” I say. “And with your heart failure getting worse, your health is unlikely to improve.”

He nods.

“We have services designed to help keep you comfortable for whatever time you have left,” I venture. “And you could stay at home.”

Again, his daughter looks relieved. And he seems … well … surprisingly fine with the plan.

I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable — at home.

Back home

Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. It’s somewhat hard on his wife to have him die at home, she says, but he’s adamant that he wants to stay there.

A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.

The nurse confirms that he is near death.

I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?

Two days later, and two months after we first met, I fill out his death certificate.

Looking back, I reflect: He didn’t go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.

Several months later, a new name appears on my patient schedule: It’s his wife.

“My family all thought I should see you,” she explains.

She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and she’s lost some weight. No, she isn’t depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.

“He liked you,” she says.She’s suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.

I ask why.

“They were just doing more and more tests,” she says. “And I wasn’t getting any better.”

Now I know what to do. I look her in the eye and ask:

“What are your goals for your care, and how can I help you?”

-Mitch Kaminski

Source

THE important question.

This.

I agree with the literal meaning of what’s being expressed here, but I think in context the article was written to promote a particular view of what care should look like. 

Articles written in this particular tone have a slant. A hospice-related slant.

I’ve never seen an article about respecting choices tell the story of someone who said “I want to try everything that might help me survive” or “I want to investigate experimental treatment”. Or where someone asks for a feeding tube because of how exhausting their fight to eat has become.

(And, incidentally, someone who wanted physical therapy in an ongoing way would not get able to get it if they were on hospice. If you’re on hospice, only care considered palliative is covered; not care considered treatment. So, generally speaking, you can get a session or two with a PT, but you can’t get ongoing therapy. You can’t can’t generally get hearing aids, speech generating devices, or any other kind of personalized adaptive equipment covered. Hospice is always presented as a beautiful place where people’s choices are respected and they control the end of their life — but that’s only true for people with a fairly narrow range of preferences.)

There is another solution as well. It is expensive, but available. If the spouse is no longer living, there are independent geriatric case workers who, for a relatively smallish fee (a few hundred dollars a month) can set up the elder person with whatever services are available in their area, from weekly visitations to live-in help round the clock. As the elder Ages In Place, more services become available, until the need for hospice becomes evident. But the patient described was beyond those milestones, and ready for compassionate care, which he received from the doctor who was willing to ask the question this patient needed.

The article suggests through innuendo that this man was past the point of benefitting from treatment. The literal facts it describes do not suggest that.

The actual facts it describes are:

• A man had heart failure and kidney failure
  
• Management of his conditions was complicated (because treatment for one worsened the other)
• Dialysis would have been an effective ongoing treatment, but he was unwilling to get dialysis 

This isn’t a description of someone with an untreatable condition getting compassionate end of life care. It’s a description of someone who refused available treatment, and died as a result.

People have the right to refuse treatment for life-threatening medical conditions, but I don’t see that as something to celebrate. 

Articles like this always celebrate someone’s decision to choose death. That’s the only choice that is depicted positively. Even further than that, it’s often depicted as the universal choice that all patients make when their choices are respected.

And, in real life, there are elderly men with renal failure and heart failure who are choosing dialysis and are happy with that decision. And there are elderly men who are refusing treatment and are happy with that decision. And there are people being coerced in both directions.

This article, and others like it, aren’t really about choices or patient autonomy. If they were, they would tell diverse stories about choices. They would tell stories of patients who chose to be treated, alongside the stories of patients who did not. But, they only ever tell the one story. That’s not what choice is.

When only the choice to refuse treatment is depicted positively, that’s not really a story about respecting and facilitating choices. It’s a story about encouraging patients to refuse treatment.

I’m all for patient directed goals and autonomy. And I wish that’s actually what this article was about. 

I am so glad I read through this towards the end of the article.

When I talk about how my father eventually chose to end chemo because it wasn’t doing anything but making him sick and wasn’t making his (very, very terminal, metastatized everywhere) cancer any better… so many medical professionals I know nod sagely and mutter something triumphant about “you want quality of life, not quantity of life”. 

And the thing is, that’s not what my dad was about, and that’s not what he was doing.  He wasn’t acting on some kind of abstract principle of quality versus quantity.  He didn’t even have a choice whether he lived or died.  He just didn’t want to die sick from chemo that wasn’t working anyway.  Continuing chemo would not have had any benefit to begin with, not even extending his life a little.  Acting like he had much of a choice in the matter makes me really angry.  So does acting like he chose death in some sort of noble way that upholds someone else’s principles.  He chose the least shitty option of a lot of shitty options, and he really didn’t have much choice even then.

He was okay with his death in the end.  And he died unafraid, at home, without pain, pretty much exactly how he wanted to die, and that’s wonderful.  (He was afraid the pain would come back, but towards the end of his life, the pain just stopped for some reason.  Maybe that part of his body had just shut down too far to feel it anymore.)  But I would be really angry if the hospice movement or worse, the right-to-die movement (not that the two don’t have lots of intertwined connections that nobody wants to talk about), started using him as an example of their ideologies, because that’s not what he was about.  He wanted to live as long as possible.  He was just aware when the time came that he was truly dying and nothing was going to stop it, and he handled that as gracefully as he could manage.

People who are sick or dying, terminally or precariously ill, are human beings.  We make choices about our lives.  We are not simply bullet points to be used to prop up ideologies.  And if people were really so big on choice, then what happened to me with my feeding tube (it wasn’t denied, they just tried everything to talk me out of it at a time when not getting it meant certain death) would never have happened.  And my choice to get a feeding tube wouldn’t have been regarded as stupid or selfish.  (Anyone hear the one yet where people who want to die are selfless and people who want to live with severe disability or terminal or precarious illness are selfish because we take up too much time, money, and effort, and the noble thing would be to choose death?  Yeah, I’ve heard it way too often too.)

Anyway, thank you last couple posters for exposing the truth behind this story and the ideologies that make stories like this so common but their opposites so rare.

Another one I always hear: “We can keep people alive, but it doesn’t mean we should.”  (headdesk)

I really hate how self-satisfied some medical professionals get, hearing of my father’s death.  With the ugly platitudes about “quality of life not quantity of life” and the feeling that they know they’re right, they totally know they’re right, and they’re happy that my father chose what they think people should choose.  When my father didn’t have any damn choice at all, he’d have chosen life if he’d been able to.  The fact that he was actively dying, with cancer in nearly every part of his body they looked for it in, gets overlooked: there was no chance of a cure here.  WTF.  He didn’t die for anyone’s ideology any more than he lived for anyone’s ideology.  He made a personal choice out of a number of equally shitty options, and he made it work for him, and his death was beautiful in its own way, but it was not anyone’s talking point.  FFS.

21,504 notes

1:38am July 27, 2015

When a doctor didn’t believe me but then test results proved I was right…

arctic-hands:

withasmoothroundstone:

whatshouldwecallchronicillness:

[animated GIF deleted because it was giving me a headache, even though it was half the point of the post, sorry I just couldn’t reblog it… it was basically a guy looking satisfied with himself, but his head jerking over and over was messing iwth my brain functioning]

This happens to me ALWAYS.

ALWAYS.

I have so many test results proving myself right, and yet some doctors refuse to learn to trust me despite my rather extreme track record in this regard.

Just recently I said I was bleeding out of my stoma to a ridiculous degree.  Showed the guy replacing my tube that the toilet was full of blood, told him there was at least ten times as much blood as was in the picture.  He told me the blood was actually bile and that I was not bleeding.  A week later I got an endoscopy that showed an ulcer with a giant blood vessel right in the middle of it, spewing blood and blood clots.  But I know that even if I go back to this doctor and tell him this happened, he’ll laugh at me at best.  Because he does that.  He laughed at me when I said I knew the difference betwee bile and blood, and then he literally refused to respond to anything I said the entire rest of the time we were in a room together.  Literally just ignored eery word I said as if I wasn’t talking.  It was incredible rudeness.  But it seems like everyone around him goes “well that’s just what he’s like” so it’s supposed to be okay, there’s like this culture of excusing it because he’s a doctor or something.  IDK.  I’m always afraid of running into him because I just get sick of his bullshit attitude towards me, which has always varied between condescending, contemptuous, and hostile.

Does your hospital have Code/Condition H/HELP?  (It varies in terminology?)  Basically, if you can’t get your doctor to listen to your concerns, you (or your family) dial the in-hospital hotline and report the code, and you’re seen by designated responders who address your concerns immediately  and investigate why your doctor was ignoring/dismissing you.  I’ve never had to use it, but I was made aware of it last time I was an inpatient. 

Here’s something about it.

It has Patient Relations, which I’ve had to use multiple times, usually when I was far too out of it to actually call them myself, so my DPA ended up doing it.  It was sometimes an extreme struggle even then.  Luckily my main doctors all believe me about stuff – they’d be stupid not to at this point, as I said I have so many tests backing up so much stuff I’ve said that they no longer doubt anything I say.  But when I end up in different departments of the hospital, I often run into trouble of various kinds.  And sometimes it’s trouble that would not be worth calling Patient Relations over.  But sometimes it’s life and death stuff.  And I never know which it’s going to be.  But I have never been able to successfully contact them myself, it’s always been done for me.

One example was the time they said that because I had a developmental disability, I would need an outside staff person with me 24/7 before they’d agree to admit me, even though I’d been hospitalized there many times before and had never caused any trouble or needed anything that different from any other patient because of being DD.  My DPA called Patient Relations and I was admitted immediately.  But then they immediately started trying to throw me out, and it took the combined efforts of several of my regular doctors to keep me there.  And then it was a fight to get life-saving medical treatment, where even Patient Relations couldn’t help us and we had to turn to the Internet and the threat of bad publicity.  (They conceded, when pressed, that I needed the treatment in order to survive.  They just kept coming into my room every day, several times a day, trying to persuade me not to accept the treatment.  Once people started calling the hospital, they suddenly said “You’re getting your feeding tube tomorrow.”  And I only got one more bizarre visit trying to dissuade me, and even that was half-hearted on the part of the doctor.) 

Then when I got the feeding tube and there were complications, they ignored my pain levels (because a part of the tube was lodged in the wrong part of my body, causing excruciating pain any time I moved at all) and ignored the fact that something could be wrong, and treated me like I was just complaining too much and that if heart patients could stand up then I could surely stand up even though I couldn’t roll over in bed without sobbing my eyes out.  Meanwhile my roommate got tons of pain meds thrown at every twinge she had no matter how minor, and told stories of a procedure similar to the one I’d had, and talked about how wonderful it was that any time she squeezed their hand they’d give her more anesthesia so she wouldn’t feel the pain.  (I had my procedure screaming in pain due to non-working anesthesia and was simply told “hold on” for the entire hour or so the procedure took.  I was also told “You won’t remember this later so it doesn’t matter that it hurts.”  I still remember that, all of it.  Nobody gently held my hand and told me to squeeze if I felt pain so they could adjust the anesthetic.  They just treated me like my yelling and squirming was bad behavior.) 

And that was all in one hospital stay, a couple years ago.  So Patient Relations was helpful for parts of it but couldn’t do anything about other parts.  And this is far from the only time I’ve had to involve Patient Relations.  There was the time they decided that I could eat just fine, gave me a giant fish dinner, and I puked it all up of course, but they said I was good to go home even though I couldn’t keep down any of my meds and needed IV replacements so I wouldn’t die.  And then when I refused a med that was on my chart as something I was allergic to, threatened to stick it up my butt if I “refused” it.  My DPA called Patient Relations and suddenly I was given a week to recover and start eating on my own, given new nausea meds, etc.  (That was my first gastroparesis hospitalization, but we didn’t know back then that I had gastroparesis.  They just thought I was randomly extremely nauseated.)

And there was the time I belonged in the ICU – one of many times probably – but my doctor said he would only treat pneumonia, not any of the other conditions I had, because pneumonia was what I was brought in for, therefore… none of my other conditions mattered.  (Those conditions were eventually found to be gastroparesis, myasthenia gravis, and adrenal insufficiency, all of which were messed up either by the pneumonia or by the treatments for pneumonia or both.)  Nobody put me in the ICU, although they did transfer me to a better ward after someone kicked up a fuss about them ignoring my needs when I was on the cardiac ward (as overflow, not as a cardiac patient – they didn’t like the fact that I was violently ill and making their quiet, sedate ward too noisy – so they simply closed my door and pretended I didn’t exist and that my call bell didn’t exist either).  I was severely delirious and in no state to explain everything that was happening to anyone, and I’m lucky I didn’t die.  (I know what death looks like, and it was sitting patiently next to my bed for weeks.)

And on, and on, and on.  I could tell so many stories, and Patient Relations only helps sometimes, in some situations, to some degree.

234 notes

12:22pm July 23, 2015

Pelvic floor dysfunction?

merchantfan said:

You might have pelvic floor dysfunction. That’s what I have which prevents things from getting in.

Interesting.  I did have to go to physical therapy for something about my pelvic floor muscle, but I didn’t think to connect it to this. 

My urethra is spastic and I couldn’t pee and kept getting UTIs.  So they did biofeedback with electrodes on my pelvic floor muscle, and when that wasn’t enough they gave me an Interstim implant which relaxes the muscles so I can pee better.  It doesn’t do it perfectly, but between learning to relax it in PT and the Interstim doing the rest, I can usually pee enough to avoid infections these days.

So I don’t really know what pelvic floor dysfunction is, but I know they kept mentioning my pelvic floor muscle in connection with the spastic urethra.  So maybe it’s connected to my problems with gyn exams?  I don’t know.  I assume if one part of it has spasticity then the whole thing might?

4 notes

6:24am July 20, 2015

The one good thing about being on antibiotics…

…is the excuse to buy lots and lots of kefir… yum.

(I drink a tiny part of it and stick the other part down my j-tube, that way both my stomach and intestines get the probiotics.  And honestly any excuse to drink any amount of kefir is good enough for me.)

Also I’m cautiously optimistic about the skin infection.  It seemed to turn around significantly, yesterday afternoon – but then it got a little worse again.  There’s complicating factors too.  But at least I didn’t feel quite as much like I was watching a border war taking place on my skin, because it’s really disconcerting to watch the redness move back and forth and wonder which side is winning.  I’m still kind of nervous about it though, I’ll believe it’s over when it’s over.

Meanwhile I’m photographing it every day so that if someone asks me how it’s been doing I can just show them.  

Which reminds me, I took some really gross photos of it when the abscess was at its most leaky, which I won’t describe or post here.  But I loved the different ways my doctor and nurse responded to it:

The doctor said “Wow, uh, I’m glad I already ate lunch because that picture is disgusting.”

The nurse nonchalantly said something like “Yeah it’s pretty gross” – while finishing her lunch there in the room and clearly completely unfazed.

That illustrates a very common difference between doctors and nurses that I’ve noticed.:

Nurses have to deal with gross stuff a lot more directly and consistently than most doctors do, so they seem to build up a higher tolerance to it.  I mean, both groups of people have to deal with gross stuff, but nurses do more wound care and more direct patient care in general so their days are more saturated with it and they become really hardcore.  

I’ve even seen – and this bothers me – situations in the hospital many times over where gross things were happening and doctors were purposely shielded from having to deal with it, while nurses had to step in and take care of everything.  The doctors just left and came back later when things were less gross.  Even when the patients needed the doctors to have not just up and left like that.  And I’ve also seen situations where the doctors didn’t leave, but the nurses were left to handle the more disgusting elements of a situation nonetheless.

But doctors get paid more, go figure.

(Not that I’d begrudge my doctor anything at all, the guy is amazing, but nurses deserve more than they get, and I’ve developed an incredible respect for them.)

13 notes

8:31am July 18, 2015

Skin infection

I have a skin infection.

It’s serious (well, any skin infection is serious, but when you have a probable autoimmune disease and are on immunosuppressants and have adrenal insufficiency any infection is always serious).  Like I don’t need to be hospitalized, but they need to do an ultrasound and got me on lots of antibiotics and more steroids than usual and there’s an abscess that keeps breaking (the ultrasound is to see how deep it goes) and it’s in a really bad location for keeping it clean (in fact probably there are very few less sanitary locations) and it’s very painful (I broke a toe last month, this thing hurts more) and stuff just sucks right now.  

At least I know what the mysterious elevated white count was.

I don’t want advice.  On anything.  Please don’t send me any kind of advice.  Not direct, not hinted.  I can’t deal with that right now. 

And don’t be an asshole because I’m not in the mood to coddle assholes, as if I ever am.  But I can’t even make myself give a fuck about being fair to anyone who sends anon hate and the like whenever I have medical problems.  If you haven’t worked out that this stuff is real by now then you have piss-poor comprehension of anything and no compassion at all, and should not be allowed to talk to people online.  (And you don’t have to send me nice things either, just refrain from sending mean things because they’ll just get deleted.)

13 notes

12:21pm July 5, 2015

I got new glasses.

Zenni Optical now has support for prism lenses.  Although if you need both horizontal and vertical prism at once, you’re out of luck.  But supporting prism at all is a great thing.

I ordered mine with vertical prism but without horizontal.  Because I need to know if the CellCept is working for my myasthenia.  And I can’t know that without having a pair of glasses without horizontal prism – because if the glasses correct my double vision horizontally, then I can’t tell what things would look like without that correction.

So I got new glasses.

And I took this picture.

And my case manager said “Wow, you look like a cat who got too close to a camera.”

And my evening caregiver just said “…wow Mel, holy crap.  Seriously?”

It’s of course the ridiculous-looking selfies that I enjoy posting the most.  Whether it’s this, or hair that’s fluffed out so much from the humidity that it’s almost standing sideways, or other things like that.

Oh and, for the record, the CellCept may well be working because a lot of the time I’m not seeing double.  Of course this doesn’t explain why my white cell count is elevated right now instead of like… low normal or suppressed, which is what I’d expect CellCept to do.  But my liver panel was normal (not even borderline, but solidly normal) for the first time in years, so yay?

And meow.

26 notes

12:04pm July 5, 2015

Guess what?

And trust me, there are disabled people who are worse about this than  even most nondisabled people, and it really pisses me off to no end.  Because disabled people should know better.  Doctors should know better too.

It is possible to have more than one thing going wrong with the same organ, body part, or body system, at one time.

Which means, the following, especially:

If you’ve heard me say that I have a particular diagnosis.  And then you hear me talk about having a symptom that is not a part of that diagnosis.  Then DO NOT condescendingly explain to me how that diagnosis doesn’t cause that symptom and therefore (whether said outright or implied) I probably don’t even really have that diagnosis at all.

And also:

If I try and explain things to you – and it will get complicated because I have more than one thing going on with most body parts, because I have more than one disease that affects multiple body systems – DO NOT do any of the following:

• Try and tell me that my history of anxiety means in any way that I am somehow imagining this shit.  Most of my diagnoses are backed with way more data than most people have to back their diagnoses, because people don’t believe me, because I have a developmental disability and a history of anxiety.  
• Tell me that my explanations are too long.  My explanations are exactly as short as I can make them.  If you didn’t give me glib one-liners that made it sound like I didn’t know what I was talking about, I wouldn’t feel the need to write longer explanations that show I do know what I’m talking about.  It takes much fewer words to cut down a concept than to explain one.  Also, if you have a habit of writing things far longer than I’ve ever been able to write (and that I struggle greatly to read), you’re going to piss me off if you accuse me of doing something wrong just because I can’t shorten my writing any more than you can yours.  I do everything I can already, don’t guilt trip me about things I can’t do.
• After all of this is over, accuse me of “medicalizing” the conversation.  Invariably, you’re the one who asked me medical questions, or made medical pronouncements about me that I felt I needed to respond to in order to defend myself or my own ability to be accurate about myself.  If you’re asking medical questions, or making medical pronouncements, there is nothing wrong with my making a response that at least partially involves medical stuff.  (This gets even worse if, every time I say something that doesn’t agree with your heavily medicalized view of the topic, you tell me I’m wrong, about myself, and make condescending suggestions about what might be right.)

Here’s an example I got from a doctor:

Me: They think my mom has myasthenia gravis, so they’re considering that as a possible diagnosis for me too.

Doctor:  You don’t have it.  Myasthenia gravis causes specific muscle weakness.  You have generalized weakness.

Me:  Actually, I have both.  In fact, I’m pretty sure i’ve told you about both.  But I’m kind of shocked that you’d make a pronouncement like that without even asking me first about my symptoms.  I see you for migraine headaches, not neuromuscular diseases.  Why would I have told you every symptom I have that isn’t related to a headache, without your even asking?

Doctor:  Well I’m still certain you don’t have it.

A couple years later, I got a single-fiber EMG that shows I definitively have myasthenia.  Either myasthenia gravis or hereditary myasthenia (or now they know there’s also a hereditary form of myasthenia gravis just to make things more confusing).  So much for his certainty.

The generalized weakness was from adrenal insufficiency, as far as we know.  Which was also found out, absolutely, using objective testing.

Someone online then told me adrenal insufficiency is a “controversial diagnosis” and linked to a Quackwatch page.  If the person had read the Quackwatch page properly, they’d have seen that it was under a section of the page clearly marked as something like “real diagnoses that quacks misuse for their own ends”, not a section of actually controversial diagnoses.  

The controversial diagnosis is adrenal fatigue.  Some quacks have started saying adrenal insufficiency instead of adrenal fatigue because adrenal insufficiency sounds more legit, because it is more legit.  But they diagnose it in people who don’t actually have it, kind of like what’s happened to celiac disease and systemic candida infections, both of which really exist, but which quacks diagnose in people who don’t even remotely have them.  All of which makes it harder for those of us who do have any of these things, to get taken seriously.

When your adrenal insufficiency is diagnosed by repeated blood cortisol and ACTH tests along with an ACTH stimulation test, then it’s real adrenal insufficiency.  Period.  Especially when the results are as flagrantly abnormal as mine were.  It wasn’t just feeling a little tired now and then, it was getting ready to kill me, and it pisses me off that the quacks are hijacking my diagnosis to make money off people who also have real problems that aren’t getting diagnosed because the quack is too busy blaming things that don’t exist.  Nobody wins in this situation but the quacks.

But back to the topic it’s like… I have a lot of breathing problems.  I have bronchiectasis, asthma, recurring aspiration pneumonia, obstructive sleep apnea, central sleep apnea (and central apneas while I’m awake, sometimes, too), myasthenia-related breathing issues (related to muscle weakness), adrenal insufficiency-related breathing issues (also related to muscle weakness), etc.

So like…if I talk about some breathing issue that I have related to one of these things, it is not okay with me if you then lecture me about how I don’t have this other breathing issue because that one isn’t just like the thing I was describing.

Like, bronchiectasis, myasthenia, and adrenal insufficiency combined to make breathing feel like it took a whole lot of work, and a bipap helped.  Sometimes the bipap saved my life because it helped me breathe deeper.  My pulmonologist approved of me using the bipap as a makeshift noninvasive ventilator in those circumstances.  I also have sleep apnea – both kinds – which is how I got the bipap to begin with.  It helps the OSA in the usual way, and has a thing called AutoSV which treats the CSA, by detecting when I’m not breathing, shoving air into my lungs as hard as it can, and then doing this over and over until I either start breathing again or get woken up by the alarm going off saying I stopped breathing for too long.  At any rate, I tried to explain the extra work breathing entails for me, and was basically told “Well central apnea doesn’t involve a feeling of extra work with breathing, that’s the whole problem.”  Of course it doesn’t, but central apnea is not the only breathing problem I have, so I also have extra work with breathing, and I don’t understand why it’s difficult to understand that a person can have more than one disease affecting the same organs.

Like nobody gets on my case for having a stomach ulcer (which has a big open blood vessel right in the middle of it), GERD, and gastroparesis.  They don’t say “Gastroparesis doesn’t cause stomach bleeding so you don’t have gastroparesis.”  They understand that I have a bleeding ulcer and gastroparesis.  

But I would honestly not be shocked if someone said something like that one day, because people have said that about my muscle problems (from a parkinsonlike movement disorder, myasthenia, and adrenal insufficiency, all three, not just one), and my breathing problems, so why not my stomach problems?

And of course there was that time that I had aspiration pneumonia, gastroparesis, severe delirium, myasthenia, and adrenal insufficiency all interacting with each other in ways that could have killed me and should have sent me to the ICU if I’d had a competent doctor – but the doctor literally said “You came in with pneumonia, and I’m not going to treat anything other than the pneumonia.”  That was fun.  The only good part was that I was out of it too much of the time to realize the danger I was in until it was over.  And that’s not much of a good thing.

TL;DR:  Lots of disabled people have multiple disabilities.  This should no longer be a surprise to anyone.  Yet both doctors and other disabled people sometimes act as if you can only have one disability or disease or whatever, or one main one, or one per organ, or something like that.  Some disabled people even seem to have an attitude that goes something like “I have this rare condition, but everyone else who says they have it is probably mistaken so I should set them straight.”  Which just… no, don’t interact with me like that, it’s not cool and it’s triggering to boot.  Because I’ve literally almost died because of the “You can only have one thing at once” problem, or the “You don’t know what you’re saying about your own body, have you considered that it might just be an anxiety attack?” problem.

31 notes

6:03am July 5, 2015

newbatteriesforyourhalo:

regcommathe:

Adult Life Tip

Did you know you can buy those cakes at the grocery store without it being your birthday or any celebratory thing? Like you can just walk in and grab a cake and buy it and nobody’s gonna say anything. You can even walk in and get like one of those little kid batman themed cakes (or character of your choice depending on availability) and everyone there is just gonna assume that it’s totally for some small child in your life and meanwhile you get a batman cake all to yourself. Yeah, it’s not gonna be a super fantastic cake since it’s just from the grocery store, but that’s not the point. The point is cake. Cake.

I remember when I discovered that I could buy one of those chocolate creme samplers all for myself for no reason whatsoever, same with cookie dough.  It was a revelation. 

These days, I can’t eat things without serious consequences (anything I eat has to be possible to drain out of a g-tube quickly, otherwise I get really sick and could even die in the wrong circumstances, not exaggerating) but there was a time when this information would’ve been really cool to know.  Right now my food intake is limited to soup broth, and only certain kinds of soup broth at that, so things are different.  Plus, I like umami flavors so much more than sweet ones – the older I get the more true that becomes.  If I ate the same amount of sugar I could eat as a kid, I’d get sick in ways that have nothing at all to do with my gastroparesis and everything to do with the weird way that kids vs. adults process sugar.  Which must suck if you have a serious sweet tooth but your body has changed how much sugar it can handle at a time. 

Right now pretty much the only time I crave sugar is when my steroid dose increases at the same time that I miss part of a tube feeding for some reason.  That combination makes me go “need sugar NOWWWWWWWWW”.  But other than that, sugar actually feels vaguely repulsive a lot of the time.  Still, I sort of wish I’d known about this soon after I started getting my first paychecks of my own, because it would’ve been cool to have a cake entirely to myself once in awhile.  And I never, ever thought of buying one.

42,534 notes

4:13am June 29, 2015

Fey is already doing better.

At least, all of us who are watching her think so.  Her behavior is changing back to doing things she used to do that I’d totally forgotten she’d stopped doing (like memorizing the staff schedule and freaking out if people don’t show up on time or leave early, greeting people at the door, and insisting on wet food NOW), and she’s looking less like she’s wearing a tight-laced corset or something.  Less bony.  Still too bony, but we think she’s putting on weight.  (I should buy a cat scale or something next month so I can keep track of that, we don’t want her to lose any more weight, she’s already skin and bones.)  So we’re all cautiously optimistic about these new meds.

Best of all, they’re in a gel form where you put a weird little finger glove (it looks like a condom only finger-sized) on and put the gel on that and then rub it on the inside of her ear.  She’s still sensitive on her left ear, but she tolerates it, and when it’s her right ear she thinks I’m just giving her ear scritches.  (I alternate ears every day.)  It gets absorbed through the skin, meaning no pills and no shots and no power struggles and no humans having to go on antibiotics because her response to pills is to hork them up even if you get them down her throat, and then to sink her teeth as far into you as they can possibly go.  So this is good for everyone involved.  It’s a little more expensive than pills, but it’s worth the money because the pills wouldn’t work anyway and I’d pay anything to keep her alive.  (Also part of the pay is a labor charge for the compounding pharmacy, so if I buy them in bulk I get a huge discount compared to buying only a month’s supply.  I’ve just bought a month’s supply the first month because I wanted to be sure it worked before committing.)

So that’s the Fey update.

Sorry again for not being able to write a lot, but it’s very hard for me to form words lately.

31 notes

3:59am June 25, 2015

This medication scares me a lot.

4 notes

8:36am June 22, 2015

Has this, or a similar study, ever been done?

I know that vaguely similar studies have been done with psychiatric conditions.  But this would be specifically for physical conditions that can be easily confirmed if you do the right laboratory testing.  The conditions may range from rare to common, but should not be, in and of themselves, highly controversial. (1)   If they were highly controversial (whether real or quack-created, since both can be controversial for different reasons) that would mess up the experiment.  If they were not able to be confirmed by laboratory testing, then that would mess up the experiment too.

So you’d have a bunch of patients go to a doctor’s office.  The group you’re actually studying, would be patients who already have a legit diagnosis, through a combination of laboratory testing and symptom history, of at least one medical condition.  I’m not sure how the control groups would be worked out, but someone with more brain than me could put this together.

Anyway, they would go in and tell their symptoms, and their histories, to these doctors.  The doctors would of course not know whether the patient has been diagnosed, or with what.  Then we’d see how many doctors dismissed the patients out of hand, and in what circumstances.

Circumstances I can think of that would be relevant:  Being other-than-male, being a person of color, having an obvious developmental or psychiatric disability (or appearing as if you do), mentioning (or having it in a chart written up specifically for the purposes of the experiments) not being believed by other doctors, being poor, not speaking English well or speaking with a thick accent, being unable to speak at all.

And that’s just off the top of my head.  Specific variants of the experiment could be created to test those things out.  And I know that many of those things have been tested.  The thing that’s especially relevant about this particular experiment, however, is restricting it to people who could be easily diagnosed on the basis of a blood test, a brain scan, or something along those lines.  Because that makes it especially appalling when you see that a doctor has not bothered to even think in the general direction of said tests.  Or has refused to do any testing at all.  (Maybe there could even be a variant where, if a doctor doesn’t mention wanting to do any testing, the patient could say “an old doctor had suggested I get Test X done, what do you think?” and see what happens.)

At any rate, I’d love to see a truly complex set of experiments designed to show under what circumstances doctors are and are not willing to:

1.  Test patients for conditions that fit the symptoms they are describing.

2.  Acknowledge that a patient may have two or more (still easily testable) conditions causing their symptoms, rather than one condition that explains everything.

3.  Run more than one test for a condition if one of the tests comes back negative. (2)

4.  Delegate diagnosis, or parts of diagnosis, to competent specialists where necessary.

5.  Continue to take patients seriously even if they haven’t guessed at the right diagnosis yet.  (As in, not write off patients as “hysterical” the moment they can’t figure it out.)

All of these are things doctors should be doing with any of their patients, but my own experiences and the experiences of many other people with long-term chronic illness, especially relatively rare (or simply not well-known) diagnoses, do not bear out that these things are consistently happening for us, even when the stakes are life and death.  It pissed me off enough that it was happening to me, but watching it happen to family members and friends pissed me off even more.  And I’d love to see what circumstances make doctors take us more and less seriously when showing the exact same damn symptoms.  (And I’d love to see the study done on people who are already known to have the conditions, and the laboratory testing that goes with them, so that when a doctor orders tests, they’re getting back genuine results that they then have to think over and make decisions about.)

Oh and all links to medical information in this post are at the Mayo Clinic website, because while I don’t think they’re infallible (and I know in certain areas they can be just as messed up as other medical establishments), they’re generally consistently better at understanding complex, not-well-known, and rare disorders than the average website is.  I was very happy when I found out my mom was going there, because I knew that even if they couldn’t find anything or treated her badly, at least they wouldn’t be leading her in the direction of quackery.  And also I knew that any results she got from there, would be taken way more seriously by my own doctors treating me for similar symptoms, than if she were just going to her random local doctor.

She and I have, despite having diseases that turned out to be very easily testable when the right tests were done, been put through an unimaginable array of bullshit by the medical profession (as well as by laypeople who Don’t Get It in a huge way) before finally getting diagnosed (and sometimes after as well… she wouldn’t have coded in the ICU last year if they’d listened to her about needing a bipap in order to breathe).  

Things are even worse for people with diseases that don’t have names yet, or aren’t yet separated out from generic garbage-pail diagnoses, or don’t have lab tests yet that can confirm or deny the presence of any particular disease.

And believe me they’re bad enough even if you have things that can be tested easily once you know the right test to do.  (And wow are tests nervewracking under these circumstances… you don’t want the test to show that you have something awful that’s going to kill you before your time, and yet you don’t want the test to come up totally negative and leave you back at square one with some really bad doctor saying “See, that one test came back negative so you can’t possibly have anything related to Disease X.”)  I also notice that things get complicated when you have more than one disease that cause overlapping symptoms (or symptoms that seem to overlap if you don’t understand you’re looking at two or more diseases with slightly different symptoms).  Because doctors like things neat and tidy, so they like to have one disease they can trace back other diseases to.  

I’ve taken to answering “What is your primary medical condition?” with “Are you actually serious?”

TL;DR: I’d like to see a study that studies how doctors decide what testing to do, and how much testing to do, and what to do with the results of testing, on people who have a seemingly undiagnosed condition – but one that (unbeknownst to the doctors in question) is already diagnosed and can be diagnosed easily using laboratory testing if they only guess the right tests to do, and when to give up a line of inquiry, and when not to give up, and etc.  I’d like to see who gets discriminated against the worst in these scenarios, I have my guesses but I’d like to see.

Keep reading

53 notes

2:52pm June 13, 2015

So I finally got an endoscopy.

They wanted to do plasmaphoresis, but without knowing the extent of my stomach bleed, they couldn’t.  So they finally decided that (now that the adrenal insufficiency and myasthenia gravis have been properly diagnosed) it was safe for me to be put under for an endoscopy, they got a good look at what’s going on in my stomach.

Their assessment pretty much agreed with what I thought was happening:  The first time the tube had pulled out, it created an ulcer, with a visible blood vessel opening into it that’s been creating all the blood clots.  Then the ulcer never healed because the j-tube was constantly rubbing on it, so I was getting blood clots or liquid blood on a daily basis, but not enough to be worrisome.  It could be a problem if they do plasmaphoresis, though.

So they clamped it off, and they’re recommending that I talk to my doctor (yet again, it’s not like I never brought this up ages ago) about having a j-tube surgically implanted, separately from my g-tube.  I like the idea of it being over and done with.  I’m not so fond of the idea of going through the healing process of creating another stoma, more infection risk, pain, etc.  Especially given that apparently j-tubes move more due to peristalsis.  Plus the risk of anesthesia combined with bronchiectasis.

All the same, I’m glad to finally have this verified.  Last time I talked to my tube-changing doctor about this he accused me of not knowing the difference between blood and bile, laughed at me when I took offense to this, and ignored me when I pointed out that bile doesn’t clot (in fact ignored everything I said from there on out, acted like I wasn’t saying a word – and then tried to interfere with the timing of my tube changes again, because he likes to do everything he can to avoid changing my tube, even if the things he proposes make frequent tube changes more likely).

Anyway now I have yet more concrete proof of things I’ve been saying for years. I’m not even surprised anymore.

13 notes

2:59am June 6, 2015

I still remember getting diagnosed with adrenal insufficiency.

My doctor was extremely cautious about interpreting the initial cortisol results, which said there was not enough cortisol to measure. He sat me down, got very serious, and told me I might have this thing called adrenal insufficiency which would be a very serious problem if I did. But first he would have to replicate the test results, then do further testing.

He told me if I went on steroids, we could expect minor improvements in several areas. He asked a lot of random seeming questions, like when was my last period (age 28). And he sent me off for further testing which only confirmed that not only did I have it but it was pretty severe.

The steroids got me out of bed and able to exercise for the first time in years. Understand these are the Josie if the steroids athletes use. This mind can actually cause lots of muscle mass. But when they replace a near total lack of cortisol they can get rid of exercise intolerance,.

Exercise intolerance is when your body responds to even minor everyday exercise with symptoms like going limp, nausea, vomiting, shaking, temperature changes, etc. That is gone now. Within weeks I was doing fifty jumping Jack’s (but injured myself due to lacking the muscles to back up my loose joints) and climbing eleven flights of stairs. Prior to this I could not jump even with a grab bar and could not climb one flight of stairs.

I haven’t used wheelchair in a year or so. I’d gotten a manual one not dreaming that even that would be mostly unnecessary. Even with bruised ribs I’ve been walking long distances.

I know this is still serious because they insist on me carrying emergency steroids in injectable form, wearing a medical bracelet, and always informing EMTs I have adrenal insufficiency no matter why I called them. And they said I’ll be on steroids the test of my life. But thanks to my GO and my endocrinologist, the rest of my life could mean 40 to 60 more years when we were expecting more like single digits, low single digits, before this.

And yes I’ve actually posted the test results before.

I still have trouble believing it went from “you may have something really serious but likely don’t” to completely changing my life. I used to wake yup at the times of day cortisol is the lowest, so limp my neck hurt from holding into my floppy head, unable to move my arms far enough to call for help and unable to stay awake, but waking up again and again totally limp, until it passed within hours. That went away on steroids. But I’m told it meant my life was in immediate danger at the time. I’m glad it’s gone.

But the adrenal insufficiency?. Very real. No question even among the doctors who hate me the most. They can’t argue with test results any more than the myasthenia anymore. My GP meanwhile is so excited that he is trying to fix everything now.

12 notes