Hospitals and Long Term Treatment: Chronic illness thread

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  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    yeah also my friend has celiacs and eczema, and I've noticed her skin hasn't been looking great lately. So she might have some symptoms but be writing it off as stress.

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I think you just bluntly tell them, mold can be caused by faulty construction fairly easily and it is a major health hazard. I used to work for a law firm that specialized in homes with mold. If it’s a newer house the sooner they uncover it the better in case their home is under a warranty.

    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
    I strongly suspect that there is an issue with my ostomy site and that I will need to be hospitalized in the near future.

    Super looking forward to that, btw

    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
    Also not for nothing but I’ve been off pain meds for seven months now.

    Humor can be dissected as a frog can, but dies in the process.
  • BucketmanBucketman Call me SkraggRegistered User regular
    I've been dealing with diabetes for about a year and a half now, maybe a little longer. Still don't have my blood sugar where I'd like it. Still need to be more physically active, and my doctor wants to try some med.

    Well I also convinced my wife to finally see a doctor for the first time in 12 years. Just got her blood work and stuff back, and shes also diabetic. So we get to do it together, which is both awful (because it would be great if neither of us were) but also also its going to be nice being on weight loss/blood sugar journey with someone close to 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've got a nice quarter-sized ulceration a couple of centimeters below my stoma site. It is extremely painful, doesn't look like it wants to heal, and I am very worried about the possibilities of infection.

    How's everyone else's day doing?

    Humor can be dissected as a frog can, but dies in the process.
  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    My wife is having some dizziness and her eyes are going crazy making her already bad balance much worse. So not great!

  • autono-wally, erotibot300autono-wally, erotibot300 love machine Registered User regular
    I can't sleep ony my left side. For like.. 5 years. Whenever I do, my heart races, hurts, and I feel it like it's going to jump out of my chest.

    Cardiologist didn't see anything out of the usual when I went, healthy looking heart and coronary arteries.

    I have suspicions though. My whole body is kinda.. wobbly and elastic

    Both my mother and sister have this hypermobility, and my grandmother on my mother's side apparently had it too. She lived to 98, being able to work on the fields to her last day, so it's probably not life threatening, and my mother is in her 70s and has no joint or any other problems relating to it.

    My suspicion is that my organs kinda press against my heart when I lie on my left side, smothering it? Is that even possible?

    kFJhXwE.jpgkFJhXwE.jpg
  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    I can't sleep ony my left side. For like.. 5 years. Whenever I do, my heart races, hurts, and I feel it like it's going to jump out of my chest.

    Cardiologist didn't see anything out of the usual when I went, healthy looking heart and coronary arteries.

    I have suspicions though. My whole body is kinda.. wobbly and elastic

    Both my mother and sister have this hypermobility, and my grandmother on my mother's side apparently had it too. She lived to 98, being able to work on the fields to her last day, so it's probably not life threatening, and my mother is in her 70s and has no joint or any other problems relating to it.

    My suspicion is that my organs kinda press against my heart when I lie on my left side, smothering it? Is that even possible?

    The only organ that could press on it in any serious fashion is your right lung and lungs are not exactly heavy. If you have some kind of connective tissue disease, like Marfan's for instance, maybe something happens to your heart itself? I vaguely remember reading about other stuff that can cause heart issues, but only on one side, but I can't remember them well enough to even name them.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • autono-wally, erotibot300autono-wally, erotibot300 love machine Registered User regular
    furlion wrote: »
    I can't sleep ony my left side. For like.. 5 years. Whenever I do, my heart races, hurts, and I feel it like it's going to jump out of my chest.

    Cardiologist didn't see anything out of the usual when I went, healthy looking heart and coronary arteries.

    I have suspicions though. My whole body is kinda.. wobbly and elastic

    Both my mother and sister have this hypermobility, and my grandmother on my mother's side apparently had it too. She lived to 98, being able to work on the fields to her last day, so it's probably not life threatening, and my mother is in her 70s and has no joint or any other problems relating to it.

    My suspicion is that my organs kinda press against my heart when I lie on my left side, smothering it? Is that even possible?

    The only organ that could press on it in any serious fashion is your right lung and lungs are not exactly heavy. If you have some kind of connective tissue disease, like Marfan's for instance, maybe something happens to your heart itself? I vaguely remember reading about other stuff that can cause heart issues, but only on one side, but I can't remember them well enough to even name them.

    yeah both marfan and ehlers-danloss have associated heart issues, but the cardiologist didn't find any of those when he looked, and he suspected something musculoskeletal, i.e. a nerve or muscle somewhere being pinched and that pain kinda radiating into the chest

    One time when I do A LOT of sports (i.e. rowing for hours a day for a week) it went away for a few days. Then it returned, and doing the same kind of sports didn't change anything.

    kFJhXwE.jpgkFJhXwE.jpg
  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    Welp, her disability was denied, so that's cool. We'll get the letter soon I guess but the site just updated.

    Yay.

  • GnizmoGnizmo Registered User regular
    Shadowfire wrote: »
    Welp, her disability was denied, so that's cool. We'll get the letter soon I guess but the site just updated.

    Yay.

    Is this the first time she has been denied?

  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    Gnizmo wrote: »
    Shadowfire wrote: »
    Welp, her disability was denied, so that's cool. We'll get the letter soon I guess but the site just updated.

    Yay.

    Is this the first time she has been denied?

    Yes. She initially filed back in.. October? November? First denial here, which I hear is pretty common. She had a zoom call with a psychiatrist that was maybe supposed to help things along a couple weeks ago, but the psychiatrist seemed like a real jerk, and obviously that didn't help!

  • GnizmoGnizmo Registered User regular
    Shadowfire wrote: »
    Gnizmo wrote: »
    Shadowfire wrote: »
    Welp, her disability was denied, so that's cool. We'll get the letter soon I guess but the site just updated.

    Yay.

    Is this the first time she has been denied?

    Yes. She initially filed back in.. October? November? First denial here, which I hear is pretty common. She had a zoom call with a psychiatrist that was maybe supposed to help things along a couple weeks ago, but the psychiatrist seemed like a real jerk, and obviously that didn't help!

    Yeah everyone who is a part of the process is an unbelievable asshole in my experience. I was going to offer the same thing you have heard already, but I can give solid numbers to help reinforce what you know at least. Like a third of applicants get approved on the first try. About 75% get approved after the first appeal.

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I got approved on the first try, but I also had notes from the Mayo Clinic and a very straightforward diagnosis. Getting a sympathetic doctor seems to be the most key part.

    Humor can be dissected as a frog can, but dies in the process.
  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    Her doctors are super sympathetic, they've been advocating for her pretty hard. Especially her physical therapist, he's fantastic. But I also wonder if some of this was determined while he was out of the office due to covid. He was in and out of the hospital for months because he was so sick, so maybe?

    I dunno, it's frustrating hearing so many people telling her that she should be able to just get back to work no problem. Meanwhile I see how much she struggles trying to just sit up in a chair for more than 15 minutes at a time, can't walk more than a few steps without her balance being off, watch her fingers and legs quake.. like, I'm fucking crushed for her.

  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    Got the letter today. They admit in the letter that she can't do the work she used to, but could do different work. Which.. maybe? But her previous work was retail, so a lot of standing, and work from home also for Best Buy doing corporate support, which is a lot of sitting. So if neither sitting nor standing can be done well, what can she do exactly?

    Real dumb.

  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    Ugh that's awful, but typical. But awful.
    There's a thing in australia where they split up the temporary disability assessments from the permanent disability assessments but make you go through the first one no matter what, so then you get a letter telling you that you're too impaired to qualify for temporary disability and therefore will have to apply for permanent disability but in the meantime will be expected to look for work.

    Gatekeeping disability welfare is the most fucked up thing and I'm sorry you're going through this bullshit.

  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    edited May 2021
    Ugh I'm gonna have to talk to my doctor about my asthma management regime and I'm getting preemptively defensive about it.
    I've been chronically under-medicated since I arrived in the states, because drs here won't prescribe the steroid levels I actually need to be a functioning human being. After some significant back and forth with my previous dr, they finally prescribed me half of what I actually need, and because I was sick of arguing I just went with it and supplemented my intake off-book with meds i would pick up in Australia.

    When I switched jobs and hence doctors, I hoped I could adjust this upwards, but while the new person is very nice and understanding she just ended up replicating my old prescription. And that's inadequate but hey, I've been coping right? I decided I didn't want to argue.

    Except a) the brand of drug I usually get isn't covered by my current insurance, and b) covid happened and I can't get any of my usual meds from Australia. And the alternative they prescribed me has a different delivery mechanism which I can tell is not as effective (it's hitting the inside of my mouth more than my lungs, and won't fit a spacer). So I've been on this gradual autoimmune decline for about the last six -eight months. For some reason it took until this week for me to say "wait this isn't tenable, I shouldn't wake up with a blood ox below 90 and wheezing for air every single morning, I should be able to get out of bed on less than 10 hours sleep without feeling like death has personally pissed in my cereal", and I dug out some old prednisone tablets from the last time I had pneumonia and started taking my actual, needed steroid dosage.

    It's been five days and I feel like a different person. At one point last week I was thinking about quitting my job because I was so exhausted all the time, and I thought it was due to stress and the psychological effects of WFH, but actually it's probably just my fucking asthma. So I'm going to talk with my doctor, try to get at minimum my prescription bumped up, and most importantly, if I can't get back on my old medication delivery then I'm probably going to have to switch health insurance plans when the option comes up again.

    Fuck the us 'health care' system. </Stress rant>

    edit: god I haven't felt this good in a year I COULD PUNCH THE SKY
    where is god, i'm gonna attack, maybe dethrone

    tynic on
  • WeaverWeaver Who are you? What do you want?Registered User regular
    In addition to being on home rest until the 19th for my concussion, my post-herpetic nueralgia/persistent shingles infection in my forearm[I hate being a medical anomaly, it's purely "luck" of what nerve branch my shingles infection latched onto] decided to toss up a massive rash over a quarter of my forearm. It's located on the back half near my elbow but the pain shoots down to my wrist. I've been applying steroid creams and the hospital is sending me a different antiviral, but I asked and they don't have authority to prescribe a winter soldier arm.

  • SorceSorce Not ThereRegistered User regular
    Get to have my spit tested so I can see which brain pills won't fuck me up. By Mail.

    Woo!

    sig.gif
  • bowenbowen How you doin'? Registered User regular
    @tynic can the pharmacy in australia not send you a 90 day supply since you're not a full fledged US-ian, or are they not able to because you're a long term resident?

    I know there's some uh... gray area there for that.

    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
  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    As far as I know it's illegal to send prescription meds from Australia to the us, but you probably know more about the fuzzy bits than I do. I'll see what I can find out?

    (My GP has scheduled a lung function test for me so now I have to go off my self medicated dosages anyway and purposely cripple myself in order to perform appropriately poorly)

  • JedocJedoc In the scuppers with the staggers and jagsRegistered User regular
    tynic wrote: »
    As far as I know it's illegal to send prescription meds from Australia to the us, but you probably know more about the fuzzy bits than I do. I'll see what I can find out?

    (My GP has scheduled a lung function test for me so now I have to go off my self medicated dosages anyway and purposely cripple myself in order to perform appropriately poorly)

    Sucks. My asthma doc had me do that a couple of months ago and acted surprised when I couldn't actually complete the test without incapacitating coughing fits. I don't know if it's just an insurance thing or if some people just plain old get over asthma, but it seems like he's always trying to push me off my meds and then putting me back on them when my horrid corporeal form starts breaking down again.

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  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    It's definitely a thing here, yeah. "Why don't we just TRY a lower dose for a while?" "Motherfucker WHY? Also trust me, I forget to take my meds often enough that I can predict to the minute when my lungs will notice a drop in dosage, this isn't a great unknown question"

  • LabelLabel Registered User regular
    My da had a minor heart attack a week ago, and has been in the hospital since. He is now post-surgery and seemingly doing okay.

    It has been a time. Whew.

  • tynictynic PICNIC BADASS Registered User, ClubPA regular
  • bowenbowen How you doin'? Registered User regular
    tynic wrote: »
    As far as I know it's illegal to send prescription meds from Australia to the us, but you probably know more about the fuzzy bits than I do. I'll see what I can find out?

    (My GP has scheduled a lung function test for me so now I have to go off my self medicated dosages anyway and purposely cripple myself in order to perform appropriately poorly)

    Last I knew once you become a "resident" it becomes a lot more squirrely, you can generally ship a 90 day supply from your doc.

    Foreign national status lets you get around some of the rules for it... I hope it applies to you because that'd be awesome if you could just circumvent our shitty medical system.

    https://www.fda.gov/industry/import-basics/personal-importation

    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
  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    Oh awesome, that could nearly literally be a lifesaver

    Thanks @bowen !!

  • MillMill Registered User regular
    Well just had cataract surgery on my left eye yesterday. Get to find out in the afternoon how much that's going to help vision in that eye, given that there are concerns that my untreated AS and having on and off inflammation for the past year may or may not have damaged the retina.

    Still fighting bullshit with the healthcare system just to get back into seeing a specialist to get back on remicade. Pretty sure most of the issue is the pigs that own private insurance muscling in bullshit that delays the process needlessly.

    -"Nope, you can't just schedule an appointment with a specialist, even though you hade one before and your chronic condition isn't something that will change. You still have to get a generalists referral." Like the generalist I had just rubberstamped the thing, but if shithead oligarch pigs weren't involved, a specialist literally could just have fucking asked for my medical records and seen that I have ankylosing spondylitis and I could have gotten the ball rolling like two months earlier on getting back on remicade instead of having to wait for an appointment with a generalist. The excuse for this nonsense I keep hearing is "well but hypochondriacs" and I keep thinking "yeah, check people's medical records and only require the generalist when it's a first time diagnosis for something that can't be cured."

    -Now dealing with the bullshit of "well we can't get you in until two months from now, so we need you contact your generalist to resend the paperwork." It's like fuckers, let me get stuff scheduled to get the care I need, instead of having to go through nonsense that keeps delaying things. I'm also pretty sure this is nonsense that some dick head private insurer has successful pushed into be general policy that everyone has to deal with.

  • UrielUriel Registered User regular
    I'm wearing a 24 hour EKG thingy today.

    Only 2 more hours and I'll be free from it.

    The pads are itchy.

  • ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    I'm wearing a 24 hour EKG thingy today.

    Only 2 more hours and I'll be free from it.

    The pads are itchy.

    I had to wear a Zio patch for two weeks. Taking it off fucking hurt, and then continued to itch for another week after.

    The results were pretty fun to read through, including a time when my heart was 260bpm (picking up vibrations from a rotary hammer drill).

  • knitdanknitdan In ur base Killin ur guysRegistered User regular
    One of the dialysis nurses at my clinic is leaving, though not for stupid reasons. She’s just getting old and feels like she can’t keep up with the pace anymore. I think she might have a different job lined up that’s not quite as active.

    I get the feeling she was only working there the last 5 years to help support her adult son and his family (he doesn’t work for some reason I’ve never really pried into)

    She’d been around since I started and I’m happy she’s doing what she wants but on the other hand she also had the most experience working with me so she knew all my quirks.

    I dunno it’s just a weird feeling to outlast all the staff I started with as a patient.i

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • Satanic JesusSatanic Jesus Hi, I'm Liam! with broken glassesRegistered User regular
    So just over a week after I left hospital, I'm back in again. Last time it was because of a sudden new pain in my knee, which I still have. Bow it's because I lost the strength to even get out of a chair, with added leg cramps and shooting pains in the leg. I had been loosing strength all week. It's not a back issue, and my legs have edema in them making them heavier to lift, but now I can't lift them at all.

    my backloggery 3DS: 0533-5338-5186 steam: porcelain_cow goodreads
  • knitdanknitdan In ur base Killin ur guysRegistered User regular
    That is…not ideal. Hope they figure out what’s up.

    “I was quick when I came in here, I’m twice as quick now”
    -Indiana Solo, runner of blades
  • SorceSorce Not ThereRegistered User regular
    Anyone have any recommendations for a CPAP supply website? The local store here can't find their ass with a flashlight, and I'm tired of it.

    sig.gif
  • UrielUriel Registered User regular
    I am prediabetic according to my recent blood work. Back up near 400lbs too.

    Oh I'm also still like 2 years overdue for a throat scope for my Barrets esophagus.

    I have to call and schedule with the neurologist again too because the pain in my left arm has only gotten worse the past year.

    I feel like I'm falling apart.

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I have some surgery scheduled for december 8th, to revise my ostomy and fix issues that have been plaguing me for months

    At minimum though, I'm gonna lose half an inch to an inch of intestines.

    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
    Surgery went well! I am sans some intestines but otherwise I am recovering

    Humor can be dissected as a frog can, but dies in the process.
  • Virgil_Leads_YouVirgil_Leads_You Proud Father House GardenerRegistered User regular
    Hell yeah, good to hear!

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