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Hospitals and Long Term Treatment: Chronic illness thread

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Posts

  • WeaverWeaver Who are you? What do you want?Registered User regular
    So my VA records didn't get passed on to the neurosurgery clinic here, so I had to do a lot of verbal backfill today. Ordering a new MRI and EMG since things have gotten worse since my last scans.

  • WeaverWeaver Who are you? What do you want?Registered User regular
    Luckily this MRI will be in an actual hospital, and not in a freezing trailer out by the VA hospital loading docks.

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    this is my first vacation where I'm actually giving a shit about my celiac disease and not eating gluten and it is maddening to send emails and messages and never get a response about whether or not I can eat somewhere

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    So uh, I got...how do I put this....I got mansplained by a nurse practitioner today. I think she was trying to be nice, but oh Lord it came off as condescending and was really frustrating to deal with. And she was there because my regular doc had a meeting to be in, so I didn't get to ask any of the questions I wanted to.

    Arrrrrrgh

    Humor can be dissected as a frog can, but dies in the process.
  • CreaganCreagan Registered User regular
    cabsy wrote: »
    this is my first vacation where I'm actually giving a shit about my celiac disease and not eating gluten and it is maddening to send emails and messages and never get a response about whether or not I can eat somewhere

    My mom isn't celiac, but she has enough allergies that she's about as restricted. Is there any way you can bring a stash of safe food for yourself? That's what she frequently does on vacations with my dad's family.

    Also, you can usually empty a minibar and use that to stash stuff during the day. Just check that there isn't a weight sensor first.

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    Creagan wrote: »
    cabsy wrote: »
    this is my first vacation where I'm actually giving a shit about my celiac disease and not eating gluten and it is maddening to send emails and messages and never get a response about whether or not I can eat somewhere

    My mom isn't celiac, but she has enough allergies that she's about as restricted. Is there any way you can bring a stash of safe food for yourself? That's what she frequently does on vacations with my dad's family.

    Also, you can usually empty a minibar and use that to stash stuff during the day. Just check that there isn't a weight sensor first.

    We've got a suite with a kitchen and I ordered some toaster bags and such, but we're big foodies and I did a ton of research about places we might want to go and then half of them just haven't responded to my inquiry and it is sooo frustrating

    one of them finally answered today to say they didn't know what gluten was and if I could explain they could maybe answer my question... which was a different kind of frustrating

  • I ZimbraI Zimbra Worst song, played on ugliest guitar Registered User regular
    My fiancee had her follow up with her surgeon yesterday. Not only did she not get released back to work, but the doc thinks that when she hurt her knee at work the wire cerclage on her patella may have been bent or twisted, which she thinks is causing some of the pain in the knee. So my fiancee will need surgery to remove the wire, which will be her 12th on that knee since 2013. But since she's way out of FMLA time we'll have to put it off until she's eligible again, which will be at least 8 months after she finally does return to work.

    This all sucks.

  • bowenbowen How you doin'? Registered User regular
    I dunno if I'd put off something like that where my body is potentially on the line.

    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
  • I ZimbraI Zimbra Worst song, played on ugliest guitar Registered User regular
    bowen wrote: »
    I dunno if I'd put off something like that where my body is potentially on the line.

    It's painful but as far as we can tell not structurally damaging. And she has a pain tolerance like you would not believe.

    Given what's bound to happen with the ACA we need her to do everything we can to keep her job and, more importantly, her insurance.

  • bowenbowen How you doin'? Registered User regular
    oh okay good, I was worried there that it might be one of those issues where if you ignore it its 10 times worse

    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
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    illness and school c-c-combo bullshit: I've put off my makeup work because I kept thinking 'tomorrow I'll feel better', now it's all due today and I feel sicker than shit, I keep getting progressively more nauseous as time goes by

    AWESOME

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Can you ask for an extension?

    Humor can be dissected as a frog can, but dies in the process.
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    Can you ask for an extension?

    I have no idea and infuriatingly this professor doesn't really email and I don't have his phone number

  • SkwigelfSkwigelf Passed out in a cloud of farts and cigarette smoke.Registered 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?

    Please be careful with Methotrexate and be aware of the long-term side effects.

    My dad took it for almost 22 years for his rheumatoid arthritis. The long-term effects include potential lung damage and a reduced immune system. From about 2011-2015 my dad had developed a chronic cough that doctors misdiagnosed as sleep apnea. In October 2015 he came down with pneumonia and was on antibiotics for a couple weeks. Then again in December he got pneumonia. And one more time in January. By the time doctors had diagnosed the type of pneumonia he had, the damage was done. In February, after spending the last 2 and a half weeks of his life in a hospital hooked up to breathing machines, he fell into a coma that doctors were certain that either a) 90% chance he never wakes up, or b) he wakes up but spends the rest of his life in a hospital/nursing home hooked up to breathing machines. My family made the decision to pull the plug, as he told us he would never want to live like that.

    Apparently my Mom and Dad knew about the side effects and that his life expectancy would be around 65-75, but they never told my brother and I as to not worry us.

    I don't mean to scare you, but just be careful and aware and maybe talk to your doctor about it.

  • 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
    I mean, for the record: I am not taking Methotrexate anymore because it was fucking with systems. The reduced immune system was exactly what I wanted out of the deal because my immune system is literally killing me.

    Like, right now I am dealing with a dentist, and apparently he didn't think I was lucid while he talked with me? But I was when I talked with him? It's just a thing that happens when I start feeling really shitty for some reason: people think that I am not lucid. But I am. I am just feeling really, really shitty.

    I should mention that right now my body seems to have adapted to the pain medication that I have been taking? I don't understand it at all? Like, if I save up my medicine and take extra during the day it doesn't help anymore than taking it regularly. It just...doesn't seem to have an effect. I would be more perplexed, but becoming immune to the effects of medication is kinda what my body does.

    Munkus Beaver on
    Humor can be dissected as a frog can, but dies in the process.
  • bowenbowen How you doin'? Registered User regular
    Pain medication especially it's easy to build tolerances with, psych-meds are the other big one.

    Benadryl is one of the more common OTC ones that you get tolerance buildup with (needs about a 2 day rest every 3 days of use)

    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
  • 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
    There's "tolerance" and then there's "immunity," and this feels more like the latter than the former.

    EDIT: For the record, there are a lot of pain medications that simply do not work on me. I would hate to add this particular one to that list.

    Munkus Beaver on
    Humor can be dissected as a frog can, but dies in the process.
  • bowenbowen How you doin'? Registered User regular
    Yeah it does sounds slightly different than tolerance, but it might be tangentially related to your "nothing works" problem too. I wonder if it's genetic.

    *invests in robot bodies for munkus*

    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
  • 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 immune, in general, to Fentanyl, any type of Extended Release Medication, and Morphine. And that's IV or Oral. I am seemingly immune to most forms of oral Dilaudid but not IV Dilaudid, and since IV Dilaudid is the only one of the big 3 that works IV on me we haven't been pushy about trying to find an oral composition that might work.

    And yeah, literally every extended release medication form of pain control I have ever tried to take has failed. Up to the point where I had to be hospitalized twice because of rapid withdrawal because my body simply stopped absorbing anything from the medication. Though that might be a mechanical thing from the compound and the gut? But even when it was an ER drug that was in the form of a powder or something you placed under your tongue it still didn't work.

    Humor can be dissected as a frog can, but dies in the process.
  • bowenbowen How you doin'? Registered User regular
    what the fuck man

    are you redheaded by any chance too, on top of it, for that added "pain meds and anesthia don't seem to do very much at all" gene?

    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
    What's the next step? Snail venom pump?

    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
    edited January 2017
    I mean, I am not 'immune' to twilighting, but I am highly resistant to it, to the point where the last time that it was tried on me (about ten years ago) I uh...in the words of my doctor I "fought" him. Prior to that I would just curse at him and whatnot. Now they use full anesthia on me for any procedure that would nominally use twilighting.

    And as for what's next? I mean, this is out of my wheelhouse. I know about shit that I have dealt with, and that's about it.

    EDIT: I would add that I might normally do research on the subject and try to figure out what's down the road...but I am just too broken right now. It's taking all of my energy just to sit in my chair and play a game for a few minutes at a time.

    Munkus Beaver on
    Humor can be dissected as a frog can, but dies in the process.
  • BubsBubs Not Burbs ChicagoRegistered User regular
    I am immune, in general, to Fentanyl, any type of Extended Release Medication, and Morphine. And that's IV or Oral. I am seemingly immune to most forms of oral Dilaudid but not IV Dilaudid, and since IV Dilaudid is the only one of the big 3 that works IV on me we haven't been pushy about trying to find an oral composition that might work.

    And yeah, literally every extended release medication form of pain control I have ever tried to take has failed. Up to the point where I had to be hospitalized twice because of rapid withdrawal because my body simply stopped absorbing anything from the medication. Though that might be a mechanical thing from the compound and the gut? But even when it was an ER drug that was in the form of a powder or something you placed under your tongue it still didn't work.

    There's malabsorption syndrome, which refers to nutrients, and usually means you can't absorb certain sugars, fats, proteins, etc. And there's another separate issue with absorbing opiates. If you have malabsorption syndrome you often can't break down and absorb pills, and there's a way to test for it. I have it, because I was tested, but when I came home and told my pain doctor about it he told me that the two conditions aren't necessarily related to each other, which surprised me. We eventually figured out a way to test how much of the pain meds my body was able to absorb and it helped both me and him tremendously. It sounds like you might have a similar problem.

    It's not exactly a comforting thing to learn about yourself, but it does take some of the pressure off anybody who might be prescribing you pain meds. I'm not sure how any of what I wrote will help you, but it's something worth bringing up. Doctors these days are under a lot of pressure from multiple directions, and I don't really blame them for erring on the side of under prescribing, but it really sucks to be on the receiving end of that. Even if you do manage to convince a doctor that you're unable to absorb a large percentage of any drugs you put into your system it might not make a difference in terms of how they choose to treat you. It's not their pain.

    Until doctors, patients, and the people who regulate the way drugs are dispensed can come to some sort of agreement a lot of us are stuck suffering. I'm not sure why chronic pain patients have so little clout. It feels cruel, and to our loved ones it seems inhumane. Terminal illness patients are better taken care of, and the logic behind that is equal parts understandable and absurd. Pain can't kill you, but it can make life unbearable, and some of us chronic pain patients have very long lives ahead of us. I hope you're able to get some relief soon.

    PSN: thewheelz
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I mean, I don't have my entire intestines and I have an illeostomy. I have more in common with short gut syndrome than what you're describing. Basically, ER medications often don't stay in my gut long enough to get absorbed at all. I had one ER tablet get passed out basically undigested, it wasn't a case of compounds not passing muster for that particular incident (which everyone but the prescribing Doctor recognizes that it was a terrible idea to do in the first place)

    Humor can be dissected as a frog can, but dies in the process.
  • BubsBubs Not Burbs ChicagoRegistered User regular
    You're in a much different situation than I am, but it's still something that might be contributing. What about transdermals, no luck there either?

    The fentanyl patches worked pretty well for me, but with little kids around all the time it was too much of a liability. I was having to tape them down to make sure they wouldn't come loose, which I couldn't do by myself because of mobility and dexterity issues, plus there were large areas of my body where I couldn't wear the patch... It was a nightmare. But when I could get them applied correctly and they actually stayed put long enough to work, they were great.

    PSN: thewheelz
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Transdermal patches don't work because Fentayl just...doesn't work for some reason. I haven't got a DNA test to prove it, just that the last couple times they gave it to me IV they might as well have given me sugar water. It's not uncommon to have one of the big three just...not work, it's just weird that two out of three do this.

    Oh, and I'm allergic to Demerol. Just straight up allergic to it, no middle ground there.

    Humor can be dissected as a frog can, but dies in the process.
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    I have a cold from PAX. It's my nature to understate how awful I feel while simultaneously feeling like a big whiny fake. This just sucks. And my lower abdomen is still causing random bouts of pain and discomfort. I'm just so fucking tired

  • PeasPeas Registered User regular
    After fighting off cancer 2 times for 2 years in a row my mum got diagnosed with cancer again

    Fucking cancer man my poor mother

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Well, looks like I am going to be transferred from this local ER to Nashville for some semi-emergent surgery (the CT scan here says I have a blockage caused by a stricture)

    Whoooooooips dot jpeg

    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
    Or not be transferred. Looks like we're just going to drive up as someone dropped the ball on what is and isn't allowed, sooooo we wasted 8 hours more in the ER getting nothing accomplished

    Humor can be dissected as a frog can, but dies in the process.
  • pookapooka Registered User regular
    i know it's gotta be demoralizing and exhausting to deal with, but i appreciate y'all giving us updates on your situations.

    gives knowledge and solidarity to those who need it, but i am also just glad to hear from you guys.

    lfchwLd.jpg
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Someone is looking out for me.

    Cause after being told that we would have to wait for six hours again if we didn't take an ambulance to the Vandy ER (2.5 hours away) I was able to get out in an ER room within 30 minutes of arriving.

    Thank God.

    Humor can be dissected as a frog can, but dies in the process.
  • MetalbourneMetalbourne Inside a cluster b personalityRegistered User regular
    I found out my diagnosis today: major depression with psychotic tendencies.

    which, yeah, seems about right. So,

    1. I will wear the label "Psychotic" as a badge of honor, thank you very much.
    2. I was heading home one day and saw a "no skateboarding" sign, and as I glanced at it, this voice just screams, "no SNAPE boarding!"
    3. which immediately brought to mind an image of Alan Rickman doing a sick kick flip while wearing Snape's black robes.
    4. I giggled, told a friend, and then forgot about it until I saw this picture

    skateboard-baby-stroller-that-comes-with-brakes-and-handlebars-for-4425043.png

    Now I can't stop laughing so hard that I'm crying.

    Thank you voice in my head, you and I are going to get along just fine

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Ulcerations and inflammation are in my intestines, not a blockage or a stricture.

    Remember: the Alabama hospital said it was a stricture and that I would need surgery which is why we came to Vandy.

    Ha ha ha ha ha ha ha ha ha ha ha ha fuck me running.

    Humor can be dissected as a frog can, but dies in the process.
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    edited February 2017
    at the ER with lower abdominal pain at an eight (crying uncontrollably without yelling? the fuck even is a pain scale) it's insanely busy and I'm still in the waiting room after an hour and it sucks and I'm scared to death and I'm so tired

    finally actually in a bed, now comes waiting: stage two

    cabsy on
  • DevoutlyApatheticDevoutlyApathetic Registered User regular
    Ugh :bro:

    I hate the pain scale. It is so subjective and so heavily swayed by your own experiences. I've had pain that pushed me to briefly blackout. That's my 10. If I'd never been that sick my 10 would be so much lower and there is no way any given nurse is going to know my history. So what kind of evaluation tool is that?

    Nod. Get treat. PSN: Quippish
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    I have very seriously told my husband that I wanted to be allowed to kill myself before because of pain, so that's my ten. But yeah it's all ridiculous. I have a 4.5x2.5 cm ovarian cyst which "may or may not" be the cause of my pain, but CT with dye shows my intestines are well healed and clear, so that's good news

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    OK and then I reviewed my test results and I have an increased inflammation level and my white blood cell count is elevated but I guess they weren't concerned about that? I emailed my surgeon to ask him to check out my tests since last time I went to the ER they said I had diverticulosis and would be fine

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Ugh :bro:

    I hate the pain scale. It is so subjective and so heavily swayed by your own experiences. I've had pain that pushed me to briefly blackout. That's my 10. If I'd never been that sick my 10 would be so much lower and there is no way any given nurse is going to know my history. So what kind of evaluation tool is that?

    Which is why I use the "modified pain scaled." Which is based on how badly I need relief, not "is this the worst thing I have ever felt?"

    I also tell people who are involved with my pain treatment about the top 3 or 4 most painful experiences of my life in order to get the pain scale properly adjusted :whistle:

    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
    So there was and ulcer and inflammation in my intestines.

    Buuuuuuut there was no granulation tissue in the biopsy, so they are saying Crohns wasn't responsible for it this time.

    The. Fuck?

    Humor can be dissected as a frog can, but dies in the process.
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