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Hospitals and Long Term Treatment: Chronic illness thread

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Posts

  • I ZimbraI Zimbra Worst song, played on ugliest guitar Registered User regular
    Paladin wrote: »
    What's forum policy on scientific publication piracy

    Pretty sure it's "Don't."

  • tynictynic PICNIC BADASS Registered 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.

    I know the author vaguely, I'll ask if they can put it on arXiv or sim. (though Springer may have a legal requirement that you not do that, I can't recall)

  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    edited December 2016
    I currently cannot sleep due to pain

    I would like to thank God, the creator and chief architect of the universe, for this unique opportunity for experiencing pain, as well as the incredible capacity which I can feel pain without dying.

    Just kidding, fuck you God

    Metalbourne on
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    I'm so tired of feeling shitty, I'm tired of being exhausted, I'm tired of feeling nauseous, fuck

  • WeaverWeaver Who are you? What do you want?Registered User regular
    I have an appointment with a new doctor tomorrow morning, currently lying in bed trying to get my left leg to feel like a leg and not some some vague annoying faulty thing that needs lopped off and replaced. Thanks, combo peroneal nerve damage and sciatic compression!

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Talked to some more doctors about the blisters that appeared on my skin.

    "We don't really know, uh...see a dermatologist?" was the consensus;

    Humor can be dissected as a frog can, but dies in the process.
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    the internet says nausea is a side effect of starting viibryd, my doctor says no it isn't and now has me worried bc they want me to try to get an urgent appointment with my surgeon in case I have something wrong

    I'm so tired

  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    cabsy wrote: »
    the internet says nausea is a side effect of starting viibryd, my doctor says no it isn't and now has me worried bc they want me to try to get an urgent appointment with my surgeon in case I have something wrong

    I'm so tired

    I hope you're right but I also want you to get checked out just in case

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    cabsy wrote: »
    the internet says nausea is a side effect of starting viibryd, my doctor says no it isn't and now has me worried bc they want me to try to get an urgent appointment with my surgeon in case I have something wrong

    I'm so tired

    I hope you're right but I also want you to get checked out just in case

    the surgeon said it doesn't sound like anything to be worried about so I'm just chilling waiting for my husband to come home with my anti barf meds

  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    cabsy wrote: »
    cabsy wrote: »
    the internet says nausea is a side effect of starting viibryd, my doctor says no it isn't and now has me worried bc they want me to try to get an urgent appointment with my surgeon in case I have something wrong

    I'm so tired

    I hope you're right but I also want you to get checked out just in case

    the surgeon said it doesn't sound like anything to be worried about so I'm just chilling waiting for my husband to come home with my anti barf meds

    to hell with the doctor then, try to be comfortable until it passes

  • WeaverWeaver Who are you? What do you want?Registered User regular
    FINALLY! Got a surgery referral.

  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    My brain pills did not show up today. This means another 24 hours of me fighting dizziness and nausea

  • WeaverWeaver Who are you? What do you want?Registered User regular
    Appointment with surgery clinic on the 12th. Been over a decade of dealing with this shit, trying really hard not to my hopes up, but man it might be coming to an end.

  • TubeTube Registered User admin
    Weaver wrote: »
    Appointment with surgery clinic on the 12th. Been over a decade of dealing with this shit, trying really hard not to my hopes up, but man it might be coming to an end.

    Is this for your back?

  • WeaverWeaver Who are you? What do you want?Registered User regular
    edited December 2016
    Yeah, which will also hopefully solve the nerve issues in my left leg too.

    Edit: also the appointment is exam and go over options, I'm not actually getting surgery that fast.

    Weaver on
  • WeaverWeaver Who are you? What do you want?Registered User regular
    My brain pills did not show up today. This means another 24 hours of me fighting dizziness and nausea

    Oof, that sucks. Related, wasn't able to get my new painkiller filled today because insurance wanted me to try two weaker painkillers first, and then after I proved that I've already tried the other two through the VA, their insurance billing system went down.

  • TubeTube Registered User admin
    Good luck with it. Back problems can wreck pretty much everything

  • WeaverWeaver Who are you? What do you want?Registered User regular
    edited December 2016
    Thanks. It's also keeping me from being able to move up at work. The doctor this morning said it well, "You're basically, intermittently disabled."

    Weaver on
  • WeaverWeaver Who are you? What do you want?Registered User regular
    Has anyone else had any kind of lumbar disc/facet or peroneal nerve surgery? If so and you have any input, it'd be nice to have when going over options.

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    so I started a new crazy pill right before Christmas (a poor choice perhaps) and half of the people talking about it online said it was activating and kept them awake while the other half said it put them to sleep almost immediately, and I figured I'd probably be one of the snoozy ones

    I can safely say I was so, so wrong

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    So I stopped taking the methotrexate because of the sores that started bursting.

    And now I feel sick and my arthritic pain is coming back in full.

    Which would you rather? Arthritis and pain or slowly scarring, infected sores?

    Humor can be dissected as a frog can, but dies in the process.
  • bowenbowen How you doin'? Registered User regular
    if it were me, arthritis and pain

    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
  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    So I stopped taking the methotrexate because of the sores that started bursting.

    And now I feel sick and my arthritic pain is coming back in full.

    Which would you rather? Arthritis and pain or slowly scarring, infected sores?

    Once you get tired of arthritis, switch to sores. Switch to something else once sores become intolerable

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    So I stopped taking the methotrexate because of the sores that started bursting.

    And now I feel sick and my arthritic pain is coming back in full.

    Which would you rather? Arthritis and pain or slowly scarring, infected sores?

    Once you get tired of arthritis, switch to sores. Switch to something else once sores become intolerable

    It takes two-three weeks of taking the medication before you get any benefits from it, so you have to be consistent with it.

    Humor can be dissected as a frog can, but dies in the process.
  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    So I stopped taking the methotrexate because of the sores that started bursting.

    And now I feel sick and my arthritic pain is coming back in full.

    Which would you rather? Arthritis and pain or slowly scarring, infected sores?

    Once you get tired of arthritis, switch to sores. Switch to something else once sores become intolerable

    It takes two-three weeks of taking the medication before you get any benefits from it, so you have to be consistent with it.

    Oh yeah I know. I was just being jaded about the fact that the only real "pain relief" we feel is when something else starts hurting instead.

  • SorceSorce Not ThereRegistered User regular
    CPAP + Headcold = Fuckin' suuuuuucks.

    sig.gif
  • KetarKetar Come on upstairs we're having a partyRegistered User regular
    Sorce wrote: »
    CPAP + Headcold = Fuckin' suuuuuucks.

    Full face masks are the light and the way. Even if they're less comfortable.

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    So I stopped taking the methotrexate because of the sores that started bursting.

    And now I feel sick and my arthritic pain is coming back in full.

    Which would you rather? Arthritis and pain or slowly scarring, infected sores?

    Once you get tired of arthritis, switch to sores. Switch to something else once sores become intolerable

    It takes two-three weeks of taking the medication before you get any benefits from it, so you have to be consistent with it.

    Oh yeah I know. I was just being jaded about the fact that the only real "pain relief" we feel is when something else starts hurting instead.

    Personally, I consider it a Grace of God that your nervous system can only process one major pain signal at a time.

    The downside is that arthritic pain often doesn't fall into that, as it comes into play with the movement of joints and such and fades just as quickly. When my hip is fucking up from my sacriolitis I am not feeling my gut and vice versa, but my hands? That shit makes me stop moving my fingers for long periods of time, because the pain lasts generally for my usage and then it becomes a major annoyance.

    I probably won't be able to play games again unless we find a new solution for my arthritis, but since Stellara was recently approved for Crohn's (I have been taking it off label for about three years) they just (like, a few days ago) did a test to find out what the levels of Stellara are in my system in order to get a more exact dosage.

    Yes, because Stellara was off-label we had to eyeball it for the dosage. And I had literally no other options to take at that point!

    Humor can be dissected as a frog can, but dies in the process.
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    edited January 2017
    Also, here are two pictures that are from my phone that may help highlight the "wtf are we dealing with" element:
    EDIT: nevermind, they are huge, let me edit them down...
    5t873bfc8vxq.jpg
    nonzp3slzcde.jpg

    Have a picture of some of the sores on one of my hands, and a picture that shows...one of my legs/feet being rather inflated compared to the other leg/foot. Why? Nobody knows! ONLY ONE!

    Not picture: the deterioration around my stoma that nobody seems to have a grasp on what it is.

    Munkus Beaver on
    Humor can be dissected as a frog can, but dies in the process.
  • bowenbowen How you doin'? Registered User regular
    you mentioned you were on steroids (anti rejection medicine?), that's definitely something that could cause edema in the leg/ankle

    not a doctor tho

    you got a shit hand friend :bro:

    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
  • TheStigTheStig Registered User regular
    Also, here are two pictures that are from my phone that may help highlight the "wtf are we dealing with" element:
    EDIT: nevermind, they are huge, let me edit them down...
    5t873bfc8vxq.jpg
    nonzp3slzcde.jpg

    Have a picture of some of the sores on one of my hands, and a picture that shows...one of my legs/feet being rather inflated compared to the other leg/foot. Why? Nobody knows! ONLY ONE!

    Not picture: the deterioration around my stoma that nobody seems to have a grasp on what it is.

    is your left leg always more swollen than your right?

    bnet: TheStig#1787 Steam: TheStig
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    TheStig wrote: »
    Also, here are two pictures that are from my phone that may help highlight the "wtf are we dealing with" element:
    EDIT: nevermind, they are huge, let me edit them down...
    5t873bfc8vxq.jpg
    nonzp3slzcde.jpg

    Have a picture of some of the sores on one of my hands, and a picture that shows...one of my legs/feet being rather inflated compared to the other leg/foot. Why? Nobody knows! ONLY ONE!

    Not picture: the deterioration around my stoma that nobody seems to have a grasp on what it is.

    is your left leg always more swollen than your right?

    Nope!

    That was something that just happened for a few days. Occasionally they will swell up, and it's random to the extent. That particular time was the one time it was one leg to the exclusion of the other.

    Humor can be dissected as a frog can, but dies in the process.
  • TheStigTheStig Registered User regular
    That's a bad thing that I'd make sure you mention to your doc. If you get any chest pain/SOB consider the ER.

    bnet: TheStig#1787 Steam: TheStig
  • WeaverWeaver Who are you? What do you want?Registered User regular
    Back to work tomorrow, but my disc is still pressing the nerve root plus the left leg nerve stuff still has my thigh all basically dead, but my building manager came through for me and got me a key to use a bathtub(my apartment only has a shower) so I'm gonna have a hot epson salt bath after dinner and hope I can make it through my shift tomorrow with my brace, because I've already lost too much money on this flare up.

  • WeaverWeaver Who are you? What do you want?Registered User regular
    Also, pretty glad the pharmacy wasn't able to fill my new pain medication script because it could literally kill me. Over a 30% chance of causing a major cardiovascular event in people with high risk factors.

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    ahhh nothing like having to choose between feeling like absolute shit while visiting my dad or feeling like a total shit for cancelling our plans

  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    cabsy wrote: »
    ahhh nothing like having to choose between feeling like absolute shit while visiting my dad or feeling like a total shit for cancelling our plans

    On the plus side you get that heroin-like rush of relief by cancelling plans so....

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    cabsy wrote: »
    ahhh nothing like having to choose between feeling like absolute shit while visiting my dad or feeling like a total shit for cancelling our plans

    On the plus side you get that heroin-like rush of relief by cancelling plans so....

    I wish I was like John Mulaney in that regard, instead I just feel guilty and socially anxious which is really helping with the whole nausea, pain, exhaustion but can't sleep combo that made me cancel in the first place

    luckily my dad is also a spoonie so he's totally understanding

  • NightDragonNightDragon 6th Grade Username Registered User regular
    Weaver wrote: »
    Also, pretty glad the pharmacy wasn't able to fill my new pain medication script because it could literally kill me. Over a 30% chance of causing a major cardiovascular event in people with high risk factors.

    Er....wasn't able to (but will later), or decided not to once they realized that you're high risk (if I'm reading this right)?

    Because goddamn. That definitely sounds like something you don't want to mess with.

  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    Finally got my brain pills refilled so now it feels good to walk again

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