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Hospitals and Long Term Treatment: Chronic illness thread

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    JenneroseJennerose Registered User regular
    Part of the reason I'm following the doctor's recommendation and holding off is I'm desperately hoping that I don't actually have celiac and the current diet adjustments will be enough to sort out my problems.

    I just don't want to have one more thing, you know?

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Jennerose wrote: »
    Part of the reason I'm following the doctor's recommendation and holding off is I'm desperately hoping that I don't actually have celiac and the current diet adjustments will be enough to sort out my problems.

    I just don't want to have one more thing, you know?

    While this is true, you can try out the diet and if you strictly stick to it, then you can cross one thing off your list. Either way, you won't have to worry about IF out have celiac's.

    If there is a decent chance for you to have celiacs disease, then you really should try out the diet as soon as possible. You either get peace of mind by ruling out a potential diagnosis,or you start feeling AMAZINGLY better. It's a win-win!

    Humor can be dissected as a frog can, but dies in the process.
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    JenneroseJennerose Registered User regular
    Jennerose wrote: »
    Part of the reason I'm following the doctor's recommendation and holding off is I'm desperately hoping that I don't actually have celiac and the current diet adjustments will be enough to sort out my problems.

    I just don't want to have one more thing, you know?

    While this is true, you can try out the diet and if you strictly stick to it, then you can cross one thing off your list. Either way, you won't have to worry about IF out have celiac's.

    If there is a decent chance for you to have celiacs disease, then you really should try out the diet as soon as possible. You either get peace of mind by ruling out a potential diagnosis,or you start feeling AMAZINGLY better. It's a win-win!

    Thanks for the advice, but I'm just not comfortable self-diagnosing, especially since I have a host of other issues that make me feel bad. It's hard to tell what "feeling amazingly better" feels like when other things are involved (and a lot of them are abominal). I'm making a lot of very major changes to my diet as it is to address other things, so I'm going to concentrate on that. Celiac is one of a couple of possibilities, so I'll just follow my doctor's plan and keep on keeping on. If the other changes don't sort my GI issues out, I'll go back to my doc early.

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Well, with celiacs it's supposed to be SUPER DUPER OBVIOUS like big red headlights in your face if you have it and you stick to the diet. Like night and day. As in, if you stick to the diet and can't tell the difference, then you don't have it. Just something to keep in mind for the future, ruling it out can give you some peace of mind and actually catching celiac is one of those mixed blessings in that it sucks that you have it, but the solution is really straightforward and makes you feel amazingly better. Like, celiacs affects every aspect of your health and makes it all feel like shit, and removing gluten really does make people feel magically better both physically and mentally.

    Humor can be dissected as a frog can, but dies in the process.
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    RayzeRayze Registered User regular
    edited December 2016
    Ugh, I'm pretty sure my SIBO is back. Last time, my gastro guy prescribed a medication that insured denied so he ended up giving me samples. Cleared me up after two weeks but through my own stupidity of not following a diet, I feel like crap again (a year and some months later).

    I don't think I have Celiacs but maybe I should get tested for it and some other things, just to be sure.

    Rayze on
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    pookapooka Registered User regular
    the FUCK?

    so i took a fluoxetine a few minutes ago, and i suspect it broke open in my throat. i just burped, and exhaled a plume of white at my monitor. "It's not that cold in here," thinks i, and then realize the only possibility, scampering off to gulp some water down. i am surprisingly not completely freaked out (aside from trying to ... wipe ... up where the powder may have settled so the cats don't walk in it, but motherfucker, i do not dust to begin with [also, non-freakout itself suggesting that it is working as intended]) because it was like-- YOU A DRAGON.

    my throat's a smidge burny, but i don't think i inhaled any; just to be cautious, i think i shall delay my errands a bit to see if it affects me poorly.

    lfchwLd.jpg
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    knitdanknitdan In ur base Killin ur guysRegistered User regular
    That sometimes happens with my phosphorus binders. They're just calcium citrate so not exactly harmful, but it was weird as hell the first time I burped and there was a little cloud coming out of my mouth.

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
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    MadEddyMadEddy Creepy house watching youRegistered User regular
    I think I'm going to barf from my acetazolamide and I really don't want to because I'm having dysphagia issues and it feels like I'm choking when I vomit.

    The Zofran, it does nothing.

    ruby-red-sig.jpg
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    MadEddy wrote: »
    I think I'm going to barf from my acetazolamide and I really don't want to because I'm having dysphagia issues and it feels like I'm choking when I vomit.

    The Zofran, it does nothing.

    phenergan? I'm sorry :(

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I am about to start yet another immunosuppresant, apparently. Entocort. I don't really have any familiarity with it. Just that I had to switch it from a 90 day supply to a 30 day supply because a 90 day supply cost 2000 dollars and a 30 day supply cost...15 dollars.

    Humor can be dissected as a frog can, but dies in the process.
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    I am about to start yet another immunosuppresant, apparently. Entocort. I don't really have any familiarity with it. Just that I had to switch it from a 90 day supply to a 30 day supply because a 90 day supply cost 2000 dollars and a 30 day supply cost...15 dollars.

    Jesus Christ this is ridiculous

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Oh, keeping me alive costs several hundred thousand dollars a year when I don't have sudden surgeries.

    I am the 2 million dollar man. It is surprisingly below par.

    Humor can be dissected as a frog can, but dies in the process.
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    Oh, keeping me alive costs several hundred thousand dollars a year when I don't have sudden surgeries.

    I am the 2 million dollar man. It is surprisingly below par.

    no no I feel that, it's just the ridiculousness of the price difference

    or honestly the price of most immunosuppressant medications

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I think insurance was just "Nah, fuck that, you gonna buy it month to month you little shit or you pay it out of pocket" soooooo I fell out of coverage because my doctors 'tried to make it easier on me'

    Funny how that works, eh?

    Humor can be dissected as a frog can, but dies in the process.
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    OH yeah, TFW you realize that you have been going three weeks with a problem you haven't reported to anyone because you just figured you'd muscle through it and now you feel like a bit of a moron.

    Like, I didn't even realize I was doing this. I just started having some weird rash/reaction/deterioration of skin around my ostomy and increased pain at the site and just thought "I'll just power on through"

    God dammit chronic illnesses why do you make us so stupid.

    Humor can be dissected as a frog can, but dies in the process.
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    bowenbowen How you doin'? Registered User regular
    I think you're allowed a reprieve.

    The kind of mental strength one needs to get through a long term illness is herculean. Let alone several.

    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    BubsBubs Not Burbs ChicagoRegistered User regular
    Even though I've been diagnosed with a number of chronic conditions over and over again, I still manage to convince myself I'm a hypochondriac at least twice a month. I've tried to power through things that ended up being cancer, so I think it's normal to do that if you've been sick long enough.

    Also, the numerous times it's been suggested that perhaps some of my symptoms are psychosomatic cause me to constantly doubt my ability to know my own body. The only consolation is that when you've built up a medical chart like I/you/we have, doctors tend to take you pretty seriously. Ive always been deathly afraid that I'd come down with some terrible affliction and doctors wouldn't catch it in time, but that's pretty much a thing of the past now.

    PSN: thewheelz
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Well, I can be a hypochondriac about things that might be blockages because I had a stricture once before and it nearly killed me so I tend to get a little paranoid and on edge about that.

    But literally anything else and I just tend to ignore it until it gets mission critical.

    Humor can be dissected as a frog can, but dies in the process.
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    bowenbowen How you doin'? Registered User regular
    just an fyi to you guys, your doctors know a hypochondriac from someone who's genuinely sick

    my ex was the same way (kidney failure/transplant) and was so worried about bringing up "nonsense" issues that she ended up in the hospital several times, and, on extra medication since she ignored a problem that was easily solved with something like an antibiotic

    never worry about talking to your doctor, they want you to be healthy too, even if you think it's not worth talking about, it might actually be, they don't hate you. To get uber practical, you pay their bills, the more concerns you have the better off they are at the end of the day.

    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    You say this like I haven't been dismissed from an ER by an asshole Doctor so many times that I have to actively avoid one of the two hospitals in town.

    Humor can be dissected as a frog can, but dies in the process.
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    bowenbowen How you doin'? Registered User regular
    edited December 2016
    You say this like I haven't been dismissed from an ER by an asshole Doctor so many times that I have to actively avoid one of the two hospitals in town.

    ER doctors tend to be overworked and grumpy, I can agree with that.

    But you have a PCP/GP that's following your case right? They're far more likely to listen. I probably wouldn't mention it in passing in an ER unless I let it go to the point where it's now an ER issue?

    bowen on
    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    My PCP/GP has no fucking clue how my condition works and has actively hindered me as much as he has helped me.

    Humor can be dissected as a frog can, but dies in the process.
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    bowenbowen How you doin'? Registered User regular
    My PCP/GP has no fucking clue how my condition works and has actively hindered me as much as he has helped me.

    Specialist then? Are you being managed by ER doctors?

    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    My closest specialist is two hours away in Nashville.

    Humor can be dissected as a frog can, but dies in the process.
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    bowenbowen How you doin'? Registered User regular
    Well that's a perfect shit storm.

    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    To the point, my case is so niche that I am being managed by the surgery team of the top GI doctors at the Mayo Clinic in Rochester and for basic maintenance and keeping me alive is up to a Mayo trained GI specialist at Vanderbilt.

    Yes, I do end up going to the ER bunches in part to see if I need to make the trip up to Nashville or Mayo, sometimes we just drive to Nashville anyway because it's super fucking obvious. But if it's borderline or if we are unsure, then we go local. And unfortunately...locally is a crapshoot.

    Humor can be dissected as a frog can, but dies in the process.
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    bowenbowen How you doin'? Registered User regular
    Robot bodies can't come soon enough.

    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I have taken enough philosophy courses to know that robotic bodies are a bum deal unless I can keep my mushy brain.

    Humor can be dissected as a frog can, but dies in the process.
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    MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    I have taken enough philosophy courses to know that robotic bodies are a bum deal unless I can keep my mushy brain.

    You can keep either the part that allows you free will or imagination. You can't have both

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Oh hey, Metalbourne is back! How you doing, girl?

    Humor can be dissected as a frog can, but dies in the process.
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    MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    Oh hey, Metalbourne is back! How you doing, girl?

    Oh, you know, chronic lyme disease is a bitch

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Chronic lyme disease? How does that happen?

    Humor can be dissected as a frog can, but dies in the process.
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    Donovan PuppyfuckerDonovan Puppyfucker A dagger in the dark is worth a thousand swords in the morningRegistered User regular
    Chronic lyme disease? How does that happen?

    Ticks blazin' 420 erryday, brah.

    For real though: https://en.wikipedia.org/wiki/Chronic_Lyme_disease

    (tl;dr= shit is all kinds of fucked up and doctors can't figure it out, sound familiar?)

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    MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    So the cool thing is that both Lyme disease and PTSD give me this increased sensitivity to sound. Like I really want to listen to music right now but any noise makes me want to throw up

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    bowenbowen How you doin'? Registered User regular
    so it's like if superman had a hangover

    not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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    tynictynic PICNIC BADASS Registered User, ClubPA regular
    edited December 2016
    @Munkus Beaver and whoever else was in here with chronic pain issues (I know there's quite a few)

    Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain

    tynic on
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    I ZimbraI Zimbra Worst song, played on ugliest guitar Registered User regular
    That looks really interesting, Tynic. Gonna have to get one of my academic friends to snag that for me.

    Fiancee has her fecal transplant scheduled. Luckily the hospital has signed on with OpenBiome since the last one so we don't have to solicit shit from our friends this time around.

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    MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    I Zimbra wrote: »
    That looks really interesting, Tynic. Gonna have to get one of my academic friends to snag that for me.

    Fiancee has her fecal transplant scheduled. Luckily the hospital has signed on with OpenBiome since the last one so we don't have to solicit shit from our friends this time around.

    *re-buckles belt*

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    tynic wrote: »
    @Munkus Beaver and whoever else was in here with chronic pain issues (I know there's quite a few)

    Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain

    That looks interesting, but unfortunately I cannot spend 40 dollars to read it.

    Humor can be dissected as a frog can, but dies in the process.
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    PaladinPaladin Registered User regular
    What's forum policy on scientific publication piracy

    Marty: The future, it's where you're going?
    Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
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