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Hospitals and Long Term Treatment: Chronic illness thread for the repeat customers part 2

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Posts

  • SorceSorce Registered User regular
    CPAP + Headcold = Fuckin' suuuuuucks.

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    Backloggery. Now updated to be accurate for the Summer Sale! Again!
    cabsyKetarLost CanuckAnialosCaulk Bite 6RobonunSlacker71
  • KetarKetar Lacks the basic intelligence required for pretty much everythingRegistered User regular
    Sorce wrote: »
    CPAP + Headcold = Fuckin' suuuuuucks.

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

    Slacker71
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered 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!

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Metalbourne
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered User, ClubPA regular
    edited January 3
    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
    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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:

    Ladies.
    tynicLabelchrishallett83lonelyahavaSlacker71Calica
  • 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?

    the-place-beyond-the-pines-03_thumb_zps3d4e0ec7.jpg
    bnet: TheStig#1787 Steam: TheStigCFN: Stiggles
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered 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.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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.

    the-place-beyond-the-pines-03_thumb_zps3d4e0ec7.jpg
    bnet: TheStig#1787 Steam: TheStigCFN: Stiggles
    cabsy
  • 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.

    hCpR4ri.jpg
    Steam: weavermatic xbox: weavermatico
  • 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.

    hCpR4ri.jpg
    Steam: weavermatic xbox: weavermatico
  • 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

    Metalbourne
  • MetalbourneMetalbourne fucking hell, apparentlyRegistered 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

    MetalbourneCaulk Bite 6SorceSlacker71
  • 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.

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  • MetalbourneMetalbourne fucking hell, apparentlyRegistered User regular
    Finally got my brain pills refilled so now it feels good to walk again

    Caulk Bite 6Sorcecabsychrishallett83knitdanlonelyahavaGnome-InterruptusJoeUserSlacker71SkwigelfBobkins FlymoCalica
  • 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.

    hCpR4ri.jpg
    Steam: weavermatic xbox: weavermatico
  • 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.

    hCpR4ri.jpg
    Steam: weavermatic xbox: weavermatico
    Labelchrishallett83cabsySorceAnialosJoeUserAngelinaCalicaBlameless Cleric
  • 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

    Metalbourne
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered 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

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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 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.

    Ladies.
  • I ZimbraI Zimbra 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

    Ladies.
  • 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 Krypton, the noblest element. The gas of kings! Kings!Registered User, ClubPA regular
    Can you ask for an extension?

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    MadEddy
  • 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 Krypton, the noblest element. The gas of kings! Kings!Registered User, ClubPA regular
    edited January 30
    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
    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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)

    Ladies.
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered User, ClubPA regular
    edited January 30
    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
    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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*

    Ladies.
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered 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.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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?

    Ladies.
  • TheStigTheStig Registered User regular
    What's the next step? Snail venom pump?

    the-place-beyond-the-pines-03_thumb_zps3d4e0ec7.jpg
    bnet: TheStig#1787 Steam: TheStigCFN: Stiggles
    bowen
  • Munkus BeaverMunkus Beaver Krypton, the noblest element. The gas of kings! Kings!Registered User, ClubPA regular
    edited January 30
    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
    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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 Krypton, the noblest element. The gas of kings! Kings!Registered 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)

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • 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
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