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Hospitals and Long Term Treatment: Chronic illness thread

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Posts

  • I ZimbraI Zimbra Registered User regular
    My wife is going to Mayo Clinic at the end of the month to get her knee checked out as her current surgeon is out of ideas and her knee is still in rough shape. We're trying not to get our hopes up too much, but we figure if anyone has an idea it'll be Mayo.

  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    edited August 9
    Oh man.

    If you want like, restaurant advice or whatnot there are a couple of places I'd recommend.

    There's a burger joint up there...I think it's called Newt's? Newk's? Something like. Fucking amazing burgers.

    Munkus Beaver on
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  • knitdanknitdan Oh no Too much hornyRegistered User regular
    edited August 10
    Do they have mayo

    knitdan on
    “I was quick when I came in here, I’m twice as quick now”
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  • TheStigTheStig Registered User regular
    edited August 10
    It's a whole hospital dedicated to mayonnaise based healing.

    I have a pretty good story about how the Mayo clinic is responsible for a dude getting stabbed but it's not one I can share online.

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  • SorceSorce Registered User regular
    TheStig wrote: »
    It's a whole hospital dedicated to mayonnaise based healing.

    I have a pretty good story about how the Mayo clinic is responsible for a dude getting stabbed but it's not one I can share online.
    Chain letters. They're the past and the future.

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    Backloggery. It's totally updated again, I swear!
  • UrielUriel Registered User regular
    I have an overactive thyroid according to my blood work

    Which is weird, because I've been putting on weight not losing it.

    Got an ultrasound done just waiting on results. Plus an endocrinologist appointment... In January...

    Also looking into metabolic surgery... Which is scary.

    DevoutlyApatheticBucketman
  • pookapooka Registered User regular
    so at least from the first post-endoscopy bloodwork, the beau has Celiac's. Thanks for waiting 3 weeks to give us those results after multiple voicemails, btw where TF are the endo results please?

    I can't tell if he is doing that thing where he just rapidly integrates new information, if he is freaking out and not showing it, or if he just doesn't realize how much more restrictive his diet is going to get if he's gonna effectively eliminate gluten vs trusting restaurants.

    Like, he was talking about getting to eat BBQ again, I'm over here like, "Yeah, if you can ensure the sauce is gluten free, no cross-contamination with the sides..." But he's already having a hard week where it feels like everything is going wrong, on top of a couple months of feeling down about his health. I'm not gonna crash reality in quite yet.

    lfchwLd.jpg
  • UrielUriel Registered User regular
    I forgot the patient portal at the hospital let's me read the impression from ultrasounds and other tests myself.

    Apparently they found a 4mm nodule on my thyroid and recommended another test.

    Also my heartrate has been crazy lately along with random bouts of overwhelming fatigue and faintness every so many days, typically after meals.

    My next appointment with primary care isn't even until the 20th of next month... Sure hope I don't like... Have a heart attack or stroke (my resting heart rate has been pushing 110bpm lately) or other serious complication waiting for the doctors to do anything for me or even see me.

  • TynnanTynnan seldom correct, never unsure Registered User regular
    Uriel wrote: »
    I forgot the patient portal at the hospital let's me read the impression from ultrasounds and other tests myself.

    Apparently they found a 4mm nodule on my thyroid and recommended another test.

    Also my heartrate has been crazy lately along with random bouts of overwhelming fatigue and faintness every so many days, typically after meals.

    My next appointment with primary care isn't even until the 20th of next month... Sure hope I don't like... Have a heart attack or stroke (my resting heart rate has been pushing 110bpm lately) or other serious complication waiting for the doctors to do anything for me or even see me.

    It's probably worth making a call to the office and asking if they can fit you in sooner.

    UrielfurlionI ZimbraBucketmanSkeithCaulk Bite 6
  • I ZimbraI Zimbra Registered User regular
    My doctor recommended me peppermint oil capsules to help with some digestive issues I've been having. I can't tell that they're really improving things but the mentholated shits are very refreshing.

    Also it kind of sucks to be nauseous and poopy several times a month without anyone knowing why.

  • bowenbowen How you doin'? Registered User regular
    pooka wrote: »
    so at least from the first post-endoscopy bloodwork, the beau has Celiac's. Thanks for waiting 3 weeks to give us those results after multiple voicemails, btw where TF are the endo results please?

    I can't tell if he is doing that thing where he just rapidly integrates new information, if he is freaking out and not showing it, or if he just doesn't realize how much more restrictive his diet is going to get if he's gonna effectively eliminate gluten vs trusting restaurants.

    Like, he was talking about getting to eat BBQ again, I'm over here like, "Yeah, if you can ensure the sauce is gluten free, no cross-contamination with the sides..." But he's already having a hard week where it feels like everything is going wrong, on top of a couple months of feeling down about his health. I'm not gonna crash reality in quite yet.

    Sorry to hear about the celiac for him.

    I know I do similar things with big deal news like that. I just kind of don't think about it because I don't want it to be real. Something that would help me in this situation: help buying new food and meal plan for this new diet (help him make good ribs with a gluten free sauce?).

    Doctors are notoriously lazy about informing patients about their results.

    not a doctor, not a lawyer, don't @ me
    BucketmanCaulk Bite 6
  • pookapooka Registered User regular
    oh, for sure. i foresee adapting some things and just dropping many, but i've been vegetarian and done such things before, so it'll be a somewhat easier transition for me. for my American-ass burger-loving boy whose only real sweet indulgence is cookies, there's been some mourning. he has acknowledged that we have been lucky to get through our mid-30s mostly unscathed physically.
    one nice thing about the GERD diet is that he has gotten tons of practice at preparing chicken and rice (steamed in the rice cooker and pan-seared), so he's gained some confidence in cooking. i just need to get him to talk to a dietitian so they can show him that he has greater options, since he would find those kinda 'rules' reassuring; yes this vs not that. i think he just found it easier to mostly stick to chicken, rice, and veg (with the occasional foray outside that) so he wouldn't have to think about it. which... not thinking about it is shortly not an option.

    i am kinda worried about him being on the beta-blocker still, and he hasn't taken a multivitamin in years, and his coworker's wife apparently thought he looked sickly and had lost weight over the past couple months... he is at least taking some B12, and he eats good yogurt daily. and if he does have Celiac's, insurance ought to cover a nutrition consult, so i just need to do some legwork and find a pro that looks good. and who hopefully fucking answers the phone beyond the initial appointment setting. i'm real irritated with the endo's office for over promising and bad comms; i'd say i'm partly aiming my anxieties at them, but, no, it's appropriate to be pissed at incompetence when it comes to health issues. anyway.

    i am slightly quailing at the work involved in purging gluten from the house, but i'm kinda supposed to as a possible reduction in my ADHD anyway, and thus have previously half-assed it with food. but my wooden spoons! :( i guess i can display the pretty ones and my rolling pin somehow. the second-favorites are from ikea, so at least i can replace them. hmm, probably due to reseason the cast-iron just because, but i've been trying to phase out plastic anyway, so most of the cookware should still be good. wooden baking / charcuterie board... hmm. gonna sit with that one a bit.

    and it's an investment, but, wow, this thing is fucking cool: Nima gluten tester. hopefully as they iterate on it, it'll get cheaper and/or full coverage like insulin tests.

    lfchwLd.jpg
    bowen
  • UrielUriel Registered User regular
    So my doctor called me back about the thyroid thing. I got scheduled with a different endocrinologist for sooner. The 13th actually.

    So that's good.

    I hope they can do something to make me feel better because I feel like radioactive garbage this past week. My temp is rarely under 100 as is my heartrate... I am just always always tired and a little dizzy.

    At this point I'm weighing if I should visit the ER today because I feel so bad. Maybe they can help me feel at least a touch better until the 13th.

  • Satanic JesusSatanic Jesus Hi, I'm Liam! Registered User regular
    So I just might psoriasis. As if I didn't already have enough issues with my body.

    my backloggery 3DS: 0533-5338-5186 steam: porcelain_cow goodreads
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    So I just might psoriasis. As if I didn't already have enough issues with my body.

    I mean the good news is that it is imminently treatable.

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    Satanic JesusDevoutlyApatheticCaulk Bite 6Sorce
  • knitdanknitdan Oh no Too much hornyRegistered User regular
    It can be treated right away?

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    knitdan wrote: »
    It can be treated right away?

    Actually, yes.

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    Sorce
  • RanlinRanlin Oh gosh Registered User regular
    Depending on the severity you can use topical steroids, or take types of immunosuppressant meds if it's pretty bad/you get the extra fun of psoriatic arthritis.

    Sorce
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Ranlin wrote: »
    Depending on the severity you can use topical steroids, or take types of immunosuppressant meds if it's pretty bad/you get the extra fun of psoriatic arthritis.

    There are creams that aren't steroids, I believe, It's what I used to use when I was a kid.

    And basically every crohn's medication was originally a medication for psoriasis. I think my sister even takes humira now for it and it works fine for her, never even see it anymore.

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  • RanlinRanlin Oh gosh Registered User regular
    The only non-steroidal creams I can recall are basically just super moisturizers, but I wouldn't be surprised if there were other things I just never heard about. I only ever really got support for any kind of treatment when the arthritis kicked in really bad, so that's always been the focus for me.

  • DevoutlyApatheticDevoutlyApathetic Registered User regular
    Ranlin wrote: »
    Depending on the severity you can use topical steroids, or take types of immunosuppressant meds if it's pretty bad/you get the extra fun of psoriatic arthritis.

    There are creams that aren't steroids, I believe, It's what I used to use when I was a kid.

    And basically every crohn's medication was originally a medication for psoriasis. I think my sister even takes humira now for it and it works fine for her, never even see it anymore.

    Fun fact, some folks taking Humira for ulcerative colitis end up with psoriasis even though they didn't have it before and it normally treats psoriasis. My doctor is current investigating if this might also happen to folks taking it for HS, like I do.

    Guess why I know he's looking into it.

  • RanlinRanlin Oh gosh Registered User regular
    edited December 5
    Dang, I heard about psoriasis meds causing stomach/colon problems despite being used to treat them at least some times, but never the reverse.

    edit: although technically it's not causing the psoriasis, since it's only genetic iirc, it's just activating it.

    Ranlin on
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Ranlin wrote: »
    Dang, I heard about psoriasis meds causing stomach/colon problems despite being used to treat them at least some times, but never the reverse.

    edit: although technically it's not causing the psoriasis, since it's only genetic iirc, it's just activating it.

    It's an autoimmune issue, and since these things suppress your immune response the body can try to compensate for it and you end up in trouble.

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    Humor can be dissected, as a frog can, but it dies in the process.
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  • KetarKetar Ready to feel better about your own miserable lives?Registered User regular
    The Sunday after Thanksgiving in 2002 I woke up with a rather irritating ringing in my right ear. Odd, because all I'd done the night before was hang out with friends and play video games for a while and then go home and bake a pie. When the ringing hadn't gone away two days later, I went to the employee health office at the hospital connected to my workplace. After some more time and trying various meds I ended up being diagnosed with sudden onset hearing loss by an ENT doc and was told that the constant ringing was a side effect of that hearing loss - something along the lines of my ear trying to compensate for the range of high frequency hearing that had disappeared. Tried a few more treatments, including some more experimental possibilities, but never recovered any of the lost hearing. I got pretty depressed because it made my physically ineligible for work that I had spent most of my life trying to get into, and that I was actually finally close to achieving (I had a conditional job offer pending some additional screening, and had to voluntarily withdraw from the process). I don't know that I've ever really properly settled into a new field since then, and have tended to try something for 1-3 years and then move on to something else in a never-ending pursuit of some level of job satisfaction. The hearing loss worsened a couple of times over the next decade, to the point that the last time I had it tested it was categorized as profound hearing loss and I was told that a hearing aid did not have a great chance of helping. No cause for the hearing loss was ever determined, but repeated MRIs over the years at least ruled out a tumor/neuroma.

    This past Thanksgiving I eventually noticed that I was having to ask family members to repeat themselves quite a bit more than I usually do, but it was a crowded house with plenty of loud kids and I was in the kitchen most of the day with plenty of cooking noises going on. That weekend it felt like I was still asking my wife to repeat herself more often if she was talking to me from more than 10-12 feet away at all, so I started paying more attention to it. Over the next few days I realized that there was actually a quieter ringing in my left ear, which had never had any issues before, that I hadn't really noticed because the constant loud ringing in my right ear largely drowned it out. Also because the intensity of the ringing in my right ear has increased slightly in recent weeks.

    Which leads to visiting an ENT doc today, having my hearing tested, and being told that I now have mild to moderate hearing loss in my left ear. The ear that had always had perfect hearing on all previous tests. Oh, and my right ear had gotten a bit worse yet again for good measure.

    So now I get to start a 2 week course of prednisone and a diuretic in the hopes of recovering some of the lost hearing in my left ear, or at least stabilizing it. I did this twice when hearing loss was noted with the right ear, and it did nothing either time except force me to be very aware of bathroom locations and avoid long drives for 2 weeks. In the likely event that nothing improves I get to decide whether I'd like to try a hearing aid or hearing aids, or try some sort of tinnitus masking device and see if that at least helps with speech recognition and whatnot.

    Hearing loss in my good ear has been my biggest self-related fear for, well, the past 17 years now. Having it happen almost exactly the same way that it did with my right ear - and especially having it also happen over Thanksgiving weekend - feels particularly cruel. It's not life threatening, and obviously things could be a lot worse, but that's not really much consolation at the moment, you know? I just...I just...fuck...

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