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Hospitals and Long Term Treatment: Chronic illness thread

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  • TallahasseerielTallahasseeriel Registered User regular
    Just got my new patient packet in the mail for the neurologist office

    Boy they sure plastered this thing with reminders to bring co-pays and that if you miss you owe them even more huh. I fucking hate specialists.

  • Brovid HasselsmofBrovid Hasselsmof [Growling historic on the fury road] Registered User regular
    Wanted to ask a question of the ADHD folks. I'm pretty certain I don't have it, definitely don't have the H, but I do have problems with executive function that I think overlap. Time management and the related stress, and focus and memory and organisation. I was wondering if there's any apps out there designed to help people with ADD feel like they're on top of what they're doing? Because I could find that useful.

    I know I can set reminders on my phone and I do, which is helpful for events with specific times, like I'm ok at making it to doctor's appointments or whatever. It's things which are more like "I need to do this, but not any particular time" because I just procrastinate forever.

    I was thinking something that alerts me several times a day with a To Do list, so whenever I see it I can think "oh I'm in the right place/situation to do one of those now". Because just writing a To Do list still requires me to remember to check my To Do list, and I only ever really think of that when I'm in my room at the start or end of the day, and when there's something I have do to but can't/don't have to do it right now, I file it away for doing later and then usually forget again.

    Dunno if that makes sense.

    Also I guess just any tips from other people with Terminal Scatterbrain / Anxiety Procrastination would be useful.

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    edited September 2020
    Wanted to ask a question of the ADHD folks. I'm pretty certain I don't have it, definitely don't have the H, but I do have problems with executive function that I think overlap. Time management and the related stress, and focus and memory and organisation. I was wondering if there's any apps out there designed to help people with ADD feel like they're on top of what they're doing? Because I could find that useful.

    I know I can set reminders on my phone and I do, which is helpful for events with specific times, like I'm ok at making it to doctor's appointments or whatever. It's things which are more like "I need to do this, but not any particular time" because I just procrastinate forever.

    I was thinking something that alerts me several times a day with a To Do list, so whenever I see it I can think "oh I'm in the right place/situation to do one of those now". Because just writing a To Do list still requires me to remember to check my To Do list, and I only ever really think of that when I'm in my room at the start or end of the day, and when there's something I have do to but can't/don't have to do it right now, I file it away for doing later and then usually forget again.

    Dunno if that makes sense.

    Also I guess just any tips from other people with Terminal Scatterbrain / Anxiety Procrastination would be useful.

    If you are using an Android phone you can make a list in Google keep of things to do, then pin it as a widget to your home screen so that every time you unlock your phone you see it. A more complicated, but pretty much exactly what you asked for, solution would be to again make a list of things to do in keep. Then download and install an app called Tasker. Next use Tasker to create a profile that plays an alarm and opens the keep app with that note at whatever interval or trigger you want. After watching an hour of YouTube? Boom goes off. After using an internet browser for 45 minutes? Boom goes off. Every hour on the hour? Boom goes off. Phone screen off for 2 hours? Boom, etc etc. I am not sure how much more limited Tasker is on iPhone but I am about 98% sure you can do the same thing there but maybe just with time intervals. The Tasker app is extremely powerful and flexible and the community is huge so you could probably already find a setup to do this without any work on your part.

    furlion on
    sig.gif Gamertag: KL Retribution
    PSN:Furlion
    Brovid Hasselsmof
  • Brovid HasselsmofBrovid Hasselsmof [Growling historic on the fury road] Registered User regular
    That sounds kind of perfect, thanks, I'll check it out.

  • TallahasseerielTallahasseeriel Registered User regular
    Well my MRI is scheduled but it's not until the beginning of November. I guess that's ok. My second appointment with the neurologist isn't until December anyway. Still...

    They said if it turns out I have also apnea, which I'll find out at my sleep study on the 24th, it's possible I might have had a really minor stroke at some point while I was sleeping...?

    I will probably know more by the end of the year one way or the other.

  • CalicaCalica Registered User regular
    Wanted to ask a question of the ADHD folks. I'm pretty certain I don't have it, definitely don't have the H, but I do have problems with executive function that I think overlap. Time management and the related stress, and focus and memory and organisation. I was wondering if there's any apps out there designed to help people with ADD feel like they're on top of what they're doing? Because I could find that useful.

    I know I can set reminders on my phone and I do, which is helpful for events with specific times, like I'm ok at making it to doctor's appointments or whatever. It's things which are more like "I need to do this, but not any particular time" because I just procrastinate forever.

    I was thinking something that alerts me several times a day with a To Do list, so whenever I see it I can think "oh I'm in the right place/situation to do one of those now". Because just writing a To Do list still requires me to remember to check my To Do list, and I only ever really think of that when I'm in my room at the start or end of the day, and when there's something I have do to but can't/don't have to do it right now, I file it away for doing later and then usually forget again.

    Dunno if that makes sense.

    Also I guess just any tips from other people with Terminal Scatterbrain / Anxiety Procrastination would be useful.

    @Creagan has a lot of good stuff, if they're still around and feel comfortable sharing.

    Jedoc wrote: »
    The GOP cares about babies until they're born, soldiers until they're in need of care, and families until they interfere with stockholder dividends.
  • knitdanknitdan Registered User regular
    Anyone in here have any experience with parathyroidectomy?

    It’s looking like I need to have one done in the near future and while I’ve talked it through with the surgeon i’d like to know what to expect from a patient perspective

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • TallahasseerielTallahasseeriel Registered User regular
    They moved my sleep study out another week... Uhg.

  • knitdanknitdan Registered User regular
    No, that’s pretty much it. It’a also pretty much what the surgeon told me so that’s good, i was just looking for patient perspective because the things we prioritize are not always the things they prioritize.

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • knitdanknitdan Registered User regular
    Ah well, i have kidney failure so peeing isn’t an option/issue. If I’m there for more than a day I’ll probably have to get dialysis in the hospital though.

    Thanks for the response!

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
    Kamiro
  • WeaverWeaver Who are you? What do you want?Registered User regular
    Ever since I had shingles a couple months ago, I've been getting recurring red spots/streaks/bumps on my right forearm(which is where the shingles rash was). Doesn't look like any type of rash I can find on google, more like a light petechiae, and usually accompanied by a deep stinging or itching in the area. Like I'll be at work and just feel like the inside of my arm is itchy all of a sudden, I'll look over and hey new very noticeable red area, then it'll fade over the next few hours or day.

    Most recently, got up the other morning, my arm was clear, got to work, took off my coat, and had a big circular bruise with a clear center on that forearm, didn't bump my arm on anything on the way to work. The next day the center of the bruise and the outside edge towards my elbow has that red spottiness around it.

    At first, I thought it was just the shingles virus trying to come back over & over again or a vitamin deficiency or something, and now I'm like do I have fucking leukemia? Anyways, video appointment with my primary on Thursday.

    Any thoughts?

    ElTL7ou.jpg
  • TynnanTynnan seldom correct, never unsure Registered User regular
    Could be dermatographia? A friend of mine developed it after dealing with a viral illness last year and those symptoms sound similar enough.

  • WeaverWeaver Who are you? What do you want?Registered User regular
    edited October 2020
    Nah almost none of this is raised, and it's not in any pattern, plus I can scratch it just fine.

    Weaver on
    ElTL7ou.jpg
  • TallahasseerielTallahasseeriel Registered User regular
    I got my sleep study done. Sleeping on my back to not pull the ekg leads sucked and hurt. Also trying to sleep during the day because of scheduling issues, daylight, even a little bit through blinds really doesn't help me sleep good.

    Hopefully they got enough good data though.

    This Thursday I get a pulmonary function test and see that doctor again, then Friday I get my mri finally. Hope that they can figure out what's been going on and that it's not too serious.

    Brovid HasselsmofJansonfurlioncabsy
  • WeaverWeaver Who are you? What do you want?Registered User regular
    Had that appointment today, post-herpetic neuralgia, limited to my right forearm. Can't say anything about the skin stuff except that when the next occurrence happens, book the first available slot with any physician, regardless of if it's my primary or not.

    ElTL7ou.jpg
  • TallahasseerielTallahasseeriel Registered User regular
    edited November 2020
    Severe sleep apnea.

    64 breathing events an hour (!) and most of the time my spo2 was well below 90 (where it's supposed to stay above 95 all the time) I also got less than 40 minutes deep sleep.

    So no wonder I've been so fatigued.

    Tallahasseeriel on
    Donovan PuppyfuckerJansonBrovid HasselsmoffurlionLabelTynnanJedoccabsy
  • Donovan PuppyfuckerDonovan Puppyfucker A dagger in the dark is worth a thousand swords in the morningRegistered User regular
    Uriel wrote: »
    Severe sleep apnea.

    64 breathing events an hour (!) and most of the time my spo2 was well below 90 (where it's supposed to stay above 95 all the time) I also got less than 40 minutes deep sleep.

    So no wonder I've been so fatigued.

    I hope they can help you get on top of that and you start getting regular good quality sleep.

    TallahasseerielchromdomJansonSkeithfurlionCalica
  • TallahasseerielTallahasseeriel Registered User regular
    Uriel wrote: »
    Severe sleep apnea.

    64 breathing events an hour (!) and most of the time my spo2 was well below 90 (where it's supposed to stay above 95 all the time) I also got less than 40 minutes deep sleep.

    So no wonder I've been so fatigued.

    I hope they can help you get on top of that and you start getting regular good quality sleep.

    Yep. Waiting on them to call and schedule a second study to fit me with a mask and get the settings correct to get me a cpap machine.

    Donovan PuppyfuckerJedoc
  • SorceSorce Not ThereRegistered User regular
    Doctors get weird when you tell them you don't have an emergency contact or next of kin.

    steam_sig.png
    Backloggery. It's totally updated again, I swear!
  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Sorce wrote: »
    Doctors get weird when you tell them you don't have an emergency contact or next of kin.

    I've never given it any thought but I can see why that would be difficult for them. No next of kin/SO would mean that the hospital would have to make any decisions if you had unexpected issues pop up while in surgery. Don't see why it would matter one way or the other to a PCP though.

    So a few weeks ago I started Abilify after a narrow brush with suicide. I have to say it has helped to an astonishing degree. After trying so many medications I had given up on ever really being ok, much less happy, but the abilify has really levelled me out. The drawback, because of course there must be one, is that it sometimes makes me incredibly drowsy. To the point I cannot safely drive to work, even with a low dose of Adderall in my system. So once again I am faced with the insane choice between feeling happier but missing work and getting paid significantly less, or being sadder but able to pay my bills. And of course my coworkers make jokes about me missing days, even if they are mostly joking it still stings. And BMW definitely makes enough that they could fucking pay me and not even notice the money missing.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
    tynic
  • TallahasseerielTallahasseeriel Registered User regular
    Mri is this morning. It'll be good to figure out what was up with the weird ct scan. Hopefully not something bad!

    Anyway I woke up with bad indigestion from to many late night potato chips and hope it goes away before 9. I don't wanna shit the mri table while I'm in the donut.

  • TallahasseerielTallahasseeriel Registered User regular
    Can mri contrast make one dizzy?

  • WhiteZinfandelWhiteZinfandel Registered User regular
    Google says yes.

  • TallahasseerielTallahasseeriel Registered User regular
    Hrm. Glad I made it home ok then and it wasn't worse than it was.

  • TallahasseerielTallahasseeriel Registered User regular
    According to my mychart my mri findings are ok. So I didn't have a stroke and don't have ms or cancer. I imagine they might check the nerves in my neck still though for why my left arm's been weird.

    chromdomTynnanDark Raven XSatanic JesusJedocShadowfireCalicafurlionadmanbcabsy
  • chromdomchromdom Who? Where?Registered User regular
    Good news pretty much all the way around! Sorry you don't have full explanations of symptoms yet, but elimination of bad things is definitely awesome

    Drez wrote: »

    Being quoted out of context is honestly what I live for.
    TallahasseerielDonovan Puppyfuckerfurlion
  • TallahasseerielTallahasseeriel Registered User regular
    I wonder if I have like a brachial plexus injury? Given the cold /burning sensation that comes with the arm pain...?

  • TallahasseerielTallahasseeriel Registered User regular
    I'm so tired of being tired. I'm laying here nearly in tears because of how exhausted I am but even taking a nap is just going to leave me more tired than when I lay down for it and sore like I went through a machine...

    I wish they could just schedule me for my second study already and get me a cpap or whatever I need to feel better.

    I am at the end of my rope with this exhaustion.

  • Donovan PuppyfuckerDonovan Puppyfucker A dagger in the dark is worth a thousand swords in the morningRegistered User regular
    Uriel wrote: »
    I'm so tired of being tired. I'm laying here nearly in tears because of how exhausted I am but even taking a nap is just going to leave me more tired than when I lay down for it and sore like I went through a machine...

    I wish they could just schedule me for my second study already and get me a cpap or whatever I need to feel better.

    I am at the end of my rope with this exhaustion.

    Hopefully with your sleep apnoea diagnosis you will get a cpap or whatever it takes to help that issue, and you will begin to live a much less exhausted life.

    Satanic JesusSorcefurlionSkeith
  • TallahasseerielTallahasseeriel Registered User regular
    Uriel wrote: »
    I'm so tired of being tired. I'm laying here nearly in tears because of how exhausted I am but even taking a nap is just going to leave me more tired than when I lay down for it and sore like I went through a machine...

    I wish they could just schedule me for my second study already and get me a cpap or whatever I need to feel better.

    I am at the end of my rope with this exhaustion.

    Hopefully with your sleep apnoea diagnosis you will get a cpap or whatever it takes to help that issue, and you will begin to live a much less exhausted life.

    I know it's just taking so freaking long. They couldn't schedule me right away for a second study (to fit me with the mask and get the settings dialed in) after my appointment the other day. They said they'd call me to get me in but I'm worried they'll forget and now it's the weekend so it's not like I can call them.

    I can't even drive like this because I'm so tired. I'm lucky I was awake enough yesterday to get to my mri on my own. But today I can't go pick up meds from the pharmacy because it would be unsafe for me to be behind the wheel nodding off like I am.

    Its like I've been borderline sleep deprived all year so far and I just can't put up with it another day.

  • Donovan PuppyfuckerDonovan Puppyfucker A dagger in the dark is worth a thousand swords in the morningRegistered User regular
    Uriel wrote: »
    Uriel wrote: »
    I'm so tired of being tired. I'm laying here nearly in tears because of how exhausted I am but even taking a nap is just going to leave me more tired than when I lay down for it and sore like I went through a machine...

    I wish they could just schedule me for my second study already and get me a cpap or whatever I need to feel better.

    I am at the end of my rope with this exhaustion.

    Hopefully with your sleep apnoea diagnosis you will get a cpap or whatever it takes to help that issue, and you will begin to live a much less exhausted life.

    I know it's just taking so freaking long. They couldn't schedule me right away for a second study (to fit me with the mask and get the settings dialed in) after my appointment the other day. They said they'd call me to get me in but I'm worried they'll forget and now it's the weekend so it's not like I can call them.

    I can't even drive like this because I'm so tired. I'm lucky I was awake enough yesterday to get to my mri on my own. But today I can't go pick up meds from the pharmacy because it would be unsafe for me to be behind the wheel nodding off like I am.

    Its like I've been borderline sleep deprived all year so far and I just can't put up with it another day.

    I hope it all gets sorted soon, brother. You've been having a really rough time recently and you don't deserve that.

    TallahasseerielLabelCalicaJansonSkeithTynnanTef
  • TallahasseerielTallahasseeriel Registered User regular
    I called them today and I guess they gotta figure something out with my insurance still? This sucks. The past three days I've dreaded going to bed because I keep waking up in the morning with my heart beating like a kick drum in a metal band and feeling like I'm coming up from underwater.

    I am just so so very tired. Like literally tired. So Sick of being tired.

    Like I'm so tired in the mornings my concerta that used to snap me right into go mode, making to do lists and getting shit done, just barely keeps me from nodding off halfway into my breakfast shake.

    :sad:

  • TallahasseerielTallahasseeriel Registered User regular
    Finally got my appointment to fit me for a cpap machine. Sunday night. I gotta remember to shave this time so the goop isn't so bad in my beard and hair.

    JedocLabelSatanic JesusknitdanCalicaGnizmoDonovan PuppyfuckerJansoncabsy
  • JedocJedoc Bringing the past to life so we can beat it to death with a shovelRegistered User regular
    Hell yeah! It takes a little bit of getting used to, but I bet you and your robot sleeping buddy will be fast friends.

    GDdCWMm.jpg
    TallahasseerielLabelI ZimbraSorceDark Raven X
  • TallahasseerielTallahasseeriel Registered User regular
    So I was pretty much already ready to go. A few hours before my appointment... When they call me and say they have to cancel due to a gas leak in the building. Lmao fml.

    At least they called today and scheduled me on Thursday. So I have that to look forward to.

  • knitdanknitdan Registered User regular
    I’ve been in the hospital since last Wednesday, when I had a parathyroidectomy (and partial reimplantation).

    They told me I would be in recovery for at least a few days, because it turns out yanking out several glands does weird stuff to your various mineral levels. In particular, your calcium plummets. This is generally seen as a bad thing.

    Now let me just say i am extremely ready mentally to go home. I have been tapping my foot going “ok body, let’s get the calcium back into an acceptable range so I can get the fuck out of this place”. And for the most part I feel physically ready, although of course there are often things going on that as a patient I may not notice.

    But now it kind of feels like suddenly there’s a feeling of urgency on their part to get me out of here ASAP. Where before it was “oh whatever, we’ll see what the numbers look like and maybe you can go home in a few days.” Now it’s like “ok we really want to get you out of here pronto.” And part of me wonders if a bean counter got ahold of my file and started asking doctors pointed questions about why I’m still here taking up a bed 5 days after surgery.

    Anyway, I’ve lost at least 4 kilos and possibly more since i checked in because the food in here has the flavor, texture, and nutritional value of a used sponge and my body has been trying to repair itself with whatever’s on hand.

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • knitdanknitdan Registered User regular
    Speaking of, my current roomie had a massive heart attack 4-5 days ago and they’re doing everything to get him out of here short of wheeling him down to the front door and tipping him out of the chair.

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • KetarKetar Come on upstairs we're having a partyRegistered User regular
    Right now I think it's much more likely to be covid-related space issues that have them trying to free up beds rather than accounting.

    That said, I hope they get that calcium level back up soon and you're able to get back to the comfort of home.

    RanlinTynnanknitdantynicCalicaDevoutlyApatheticSorceSporkAndrewUsagiDonovan Puppyfuckercabsy
  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    edited January 11
    So, two people (a couple) in my tiny COVID bubble bought a house. I live in a one-bed apartment and my bf lives in a tiny studio, so we spent most of Thanksgiving and Christmas over at their place, since it has the most space for cooking and group activities.
    I also spent most of thanksgiving through new years feeling like total shit, physically and mentally, which I put down to a combination of burn-out, a flareup of my chronic asthma, and possibly some kind of mild stomach bug. I finally said fuck it and self-medicated a big increase in my corticosteroid intake for a few days to at least get on top of the asthma. I also started considering an elimination diet, but decided to wait on that until after the holiday chaos.

    Back at work last week, so mostly at my apartment, and apart from some on-going sleep debt issues, was basically feeling fine. Figured the steroids had worked. Then on Saturday I popped over to the bubble house to do some yard work and have a group dinner, and I fucking crashed. Come 6pm and I was slammed with fatigue, with a return of some of the digestion issues that I'd had in december. Felt too physically exhausted to even sit properly for dinner, had to go lie down on the couch for most of the evening. Notably - at one point, quite late, we went outside and popped in the hot tub. I was a little worried I might fall asleep and drown, but once in the fresh air and water I started to feel pretty good. And after a long sleep in on Sunday at the bf's place, I felt completely fine yesterday and today

    so I'm coming to the conclusion that I might just be allergic to the interior of my friend's house. (worth noting I react pretty badly to things like air fresheners and fabric softeners, BUT I don't have a sense of smell which makes it very hard to figure out when allergens are present. It could also be something more insidious, it's a pretty old house)

    tl;dr what's the politest way to ask someone to get their place tested for mould

    tynic on
  • bowenbowen How you doin'? Registered User regular
    edited January 11
    They might be experiencing the same shit just on a lesser scale (since you've got asthma).

    I'd just mention to them you've been feeling like garbo the past few visits and you're wondering if there isn't anything sinister like mold. If I was them I'd want to know if it was making my friend sick.

    I wouldn't rule out carbon monoxide either. Stomach issues, exhaustion out of nowhere, and feeling great as soon as you step outside are like... the symptoms of that.

    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
    tynicJansoncabsyjkylefulton
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