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

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    Caulk Bite 6Caulk Bite 6 One of the multitude of Dans infesting this place Registered User regular
    okay, so, I have a tentative surgery date of dec the 15th. I say tentative, because that was what they floated to us, but it still needs to be actually booked, which entails making sure all the positions in the operating room are filled (previous date was scuttled by scheduling issues).

    if all goes well, I'll be out of hospital just in time for new years, I think.

    jnij103vqi2i.png
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    DoctorArchDoctorArch Curmudgeon Registered User regular
    I will apparently be getting good health insurance soon, and that means I'll need to schedule an appointment with a periodontist to make sure my teeth don't fall out of my head.

    The way the dentists explain it to me is that orthodontics, while straitening out my teeth, made it so my teeth always impact each other in the worst way possible. So basically every single bite I take weakens the connective tissue holding my teeth in place. As a result, every time I go to the dentist they freak out because I have the gum recession of a forty-year smoker even though I've never smoked a day in my life.

    So oral surgery is in my future. Yay?

    Switch Friend Code: SW-6732-9515-9697
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    BubsBubs Not Burbs ChicagoRegistered User regular
    I looked around a bit, and this seemed to be the most appropriate thread for my request.

    I just got handed a diagnosis for CRPS, formerly called Reflex Sympathetic Dystrophy. Honestly, the diagnosis explains a lot about what I've been through in the last few years, but it's still not something I enjoyed hearing. I was also told to limit my expectations for a cure.

    I've talked at length with my doctors and spent the requisite hundreds of hours on the internet freaking myself out, and what I'm missing is input from someone with personal experience. If anyone has some insight, please don't hesitate to PM or respond in this thread. Thanks in advance, much appreciated, Wu Tang forever.

    PSN: thewheelz
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    My sister has RSD, particularly in the winter she struggles a lot. It's in her ankle the worst. Honestly the hardest thing she's having to deal with right now is that her gallbladder is all fucked up... but she can't have it removed because it may spread the rsd. And even though now she's so tired of her gallbladder problems that she's willing to risk it, nobody will operate on her because they aren't willing to risk it. She's on pain medication to help her be able to function normally, benzos to help with the mental stress caused by it, and she's thinking about doing back on anti anxiety meds because she's been having p bad anxiety again - she gets anxious about the physical pain and disease progression, anxiety flares and makes her pain worse that makes her more anxious, etc etc

    I'm not trying to be like a Debbie downer or anything, I would just basically suggest finding other people with chronic illnesses (like us!), read up on spoon theory, depending on how progressed it is you may want to consider that you'll need to be a little gentler on yourself in terms of what you "should" be able to do every day

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    Metzger MeisterMetzger Meister It Gets Worse before it gets any better.Registered User regular
    If anybody has any experience with a medical malpractice suit or anything like that, could you shoot me a PM? Cuz I got some questions.

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    And now my hip is giving my problems and has knocked me out of comission a couple of times. Dunno what is up with it. Really confused. Left him. Was already giving me issues and I was walking in a crowd. I don't see the crotch high post that normally has chains to connect to another post to corral movement. Can't see it with how thick the crowd is and how tall I am.

    Anyway, I walk at full gait into it, missing a dead on hit to the crotch, but instead almost exactly on the inside of my thigh pushing out. Now I am limping constantly, can barely move up stairs, and in some instances needed assistance just to go a length of distance (i.e. back to the car).

    Really getting tired of the almost annual at this point December "fuck you" that my body has been getting.

    Humor can be dissected as a frog can, but dies in the process.
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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Also if anyone lives in Pittsburgh I will be there in a few weeks to visit a specialized doctor about things. We can say hey, you can visit me in the hotel because I don't see me being mobile during the visit really, but I would love to see someone while I am there.

    Humor can be dissected as a frog can, but dies in the process.
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    LabelLabel Registered User regular
    sorry to hear you can't walk very well right now, munkus

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    LiiyaLiiya Registered User regular
    Yeah I'm real sorry to hear that Munkus. I'd totally come visit you if I were anywhere nearby, so instead I'll be sending you lots of well wishes.

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    cabsycabsy the fattest rainbow unicorn Registered User regular
    Also if anyone lives in Pittsburgh I will be there in a few weeks to visit a specialized doctor about things. We can say hey, you can visit me in the hotel because I don't see me being mobile during the visit really, but I would love to see someone while I am there.

    Pittsburgh is a distance, if we weren't struggling to have the finances to move I'd make a trip of it. I know there are some Pittsburgh types but I can't remember who; resident rememberer of everyone ever, @zerzhul‌ might know better than I would

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    jgeisjgeis Registered User regular
    My grandmother passed away last night.

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    CreaganCreagan Registered User regular
    I'm so sorry. Losing a family member is really, really hard.

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    jgeisjgeis Registered User regular
    I was really close to my grandmother, but I don't feel that beat up about it right now. She was in rough shape, the tumors had really loosened her grip on reality and memory. She never seemed that comfortable the last couple of months, between the cancer and the steroids they had her on.

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    BubsBubs Not Burbs ChicagoRegistered User regular
    cabsy wrote: »
    My sister has RSD, particularly in the winter she struggles a lot. It's in her ankle the worst. Honestly the hardest thing she's having to deal with right now is that her gallbladder is all fucked up... but she can't have it removed because it may spread the rsd. And even though now she's so tired of her gallbladder problems that she's willing to risk it, nobody will operate on her because they aren't willing to risk it. She's on pain medication to help her be able to function normally, benzos to help with the mental stress caused by it, and she's thinking about doing back on anti anxiety meds because she's been having p bad anxiety again - she gets anxious about the physical pain and disease progression, anxiety flares and makes her pain worse that makes her more anxious, etc etc

    I'm not trying to be like a Debbie downer or anything, I would just basically suggest finding other people with chronic illnesses (like us!), read up on spoon theory, depending on how progressed it is you may want to consider that you'll need to be a little gentler on yourself in terms of what you "should" be able to do every day

    That site has some good reads, thanks. Where she uses spoons I tend to use dollars, but it's the same concept. If you don't mind asking, (or you may know already) does your sister have issues with skin sensitivity? Essentially, does it hurt when people touch her? Also wondering if movement is exceptionally difficult. I seem to be declining rapidly and I'm wondering if there's a point at which it will taper off.

    Sorry to hear her RSD is spreading, I think that's everybody's worst fear.

    PSN: thewheelz
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    Bubs wrote: »
    cabsy wrote: »
    My sister has RSD, particularly in the winter she struggles a lot. It's in her ankle the worst. Honestly the hardest thing she's having to deal with right now is that her gallbladder is all fucked up... but she can't have it removed because it may spread the rsd. And even though now she's so tired of her gallbladder problems that she's willing to risk it, nobody will operate on her because they aren't willing to risk it. She's on pain medication to help her be able to function normally, benzos to help with the mental stress caused by it, and she's thinking about doing back on anti anxiety meds because she's been having p bad anxiety again - she gets anxious about the physical pain and disease progression, anxiety flares and makes her pain worse that makes her more anxious, etc etc

    I'm not trying to be like a Debbie downer or anything, I would just basically suggest finding other people with chronic illnesses (like us!), read up on spoon theory, depending on how progressed it is you may want to consider that you'll need to be a little gentler on yourself in terms of what you "should" be able to do every day

    That site has some good reads, thanks. Where she uses spoons I tend to use dollars, but it's the same concept. If you don't mind asking, (or you may know already) does your sister have issues with skin sensitivity? Essentially, does it hurt when people touch her? Also wondering if movement is exceptionally difficult. I seem to be declining rapidly and I'm wondering if there's a point at which it will taper off.

    Sorry to hear her RSD is spreading, I think that's everybody's worst fear.

    Her pain is localized - she can be touched, say, on the shoulder without a problem (or she's never conveyed one to me), but on her bad ankle sometimes just the pressure of a sock is too much for her to bear. Our niece is just turned four and sometimes she thinks it's funny to gently touch my sister's bad ankle because she knows she's not supposed to, but now even that causes pretty serious pain. It's also constantly cold so she'll have like 8 carefully chosen not-too-painful socks layered up on it some days. She can still walk fine for short distances but now she has a handicap tag for both her and her husband AND my dad, who lives with them right now, and something like casually walking around the store is right out. She has her husband go alone, or uses one of the scooters. She's overweight so of course people give her flack about the scooters sometimes, because people are fucking assholes. I know cold weather makes it worse, in the summer she's able to do a lot more and she likes to swim so she can still get in a bunch of exercise and outdoor time without overworking her bad ankle, but in the winter between the cold making it worse and her inability to really walk around a lot without a wheelchair or scooter she gets pretty close to housebound and then that causes hella depression. And of course not being able to get in any exercise at all, because she can't get out of the house to get to an indoor pool even if there was one nearby, means her ankle hurts more because she isn't using it.

    The good news for her is she finally found a surgeon who is really well informed about RSD to take out her gallbladder! He says the risk of RSD spreading to inside the abdominal area is low already and laparoscopic surgery makes it even lower, so hopefully she'll be able to get it taken out pretty soon. Right now she's on a diet of rice, liquids, and phenergan because she was pretty seriously dehydrated.

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    I ZimbraI Zimbra Worst song, played on ugliest guitar Registered User regular
    My girlfriend has to have her 3rd knee surgery in 2 years next month. Her patellar tendon that was repaired, and then replaced, is stretched out and her patella is sitting way high. So her knee is painful and unstable. Her original surgeon has been taking a wait-and-see approach and recommending more PT every time she sees him so we went to new doctor who right away said "This is a huge problem and there's no way PT will fix it." So it sucks that she has to have surgery, but at least we have a path forward and a possible solution.

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    jgeisjgeis Registered User regular
    All I can say is somebody better follow Frank Reynolds' advice and throw my body in the trash when I die. It costs way too much to bury somebody. I get that embalming takes some skill and that might be a fair amount of cash, but this is kind of ridiculous.

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    Donovan PuppyfuckerDonovan Puppyfucker A dagger in the dark is worth a thousand swords in the morningRegistered User regular
    jgeis wrote: »
    All I can say is somebody better follow Frank Reynolds' advice and throw my body in the trash when I die. It costs way too much to bury somebody. I get that embalming takes some skill and that might be a fair amount of cash, but this is kind of ridiculous.

    Funerals and burials are a rort. I'm getting harvested, toasted, and dumped when I die.

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    tynictynic PICNIC BADASS Registered User, ClubPA regular
    I'm getting toasted right now.

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    MadEddyMadEddy Creepy house watching youRegistered User regular
    I have developed ice pick headaches, which makes three kinds of chronic headaches for those playing along at home. Also a cold, but I don't have time for piddling bullshit maladies right now.

    ruby-red-sig.jpg
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    ChimeraChimera Monster girl with a snek tail and five eyes Bad puns, that's how eye roll. Registered User regular
    So like this barely counts as a big deal (or so I'm told) but tomorrow morning I have my first root canal and then sometime later this month I get all four of my wisdom teeth out. I'm like super nervous as I already hate the dentist and now I have to get all this work done and everyone I know has been nice enough to share their awfulhorror stories with me about their proceedures.

    On top of that, BlueCross BlueSheild of Texas screwed up and first told my the specialist doing the work that I didn't qualify for basic procedures for 6 months and I had to fight them about it on the phone for hours until I found someone who wasn't innept and that wouldn't hang up me.

    The canal will cost between $300-500 out of pocket and I havent heard about my wisdom teeth yet (but was told to expect it to be in the thousands). All of this pluss the oral pain has come just in time for Christmas and is now going to royally fuck up my plans for the holidays. I want to hold off on it all but really my mouth is killing me and the headahes it causes also do not help. :c

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    CreaganCreagan Registered User regular
    edited December 2014
    A couple thousand dollars sounds about what my wisdom teeth removal cost, although my surgery was more expensive than normal because I'm phobic of painful medical procedures to the point where if I wasn't 100% unconscious during the whole procedure, it wasn't going to happen. They gassed me out before they even stuck the IV in.

    Honestly though, if you're anywhere near as phobic as I am, (I knew I was going to be asleep the entire time, still shook and cried until the gas started working) I strongly recommend seeing if that's an option. It made things much easier. I didn't feel anything touch me. And getting gassed out isn't a terrible sensation. It just kind of feels like somebody's slowly lowering one of those heavy lead-lined dentist blankets over your thought-process.

    Here are some other things that made the entire process less miserable:
    - Keeping my head elevated and iced 24/7. Your surgeon might tell you not to do this because you can give yourself frost-bite if you're not careful. But I just took four massive ice-packs I could rotate as they warmed up, wrapped them in two layers of paper towels, and let them rest against my head for three days. I didn't swell, at all. It reduced the amount of pain I was in, too. (Also, I didn't have any signs of frost-bite at all.)
    - I ate sorbet instead of ice cream. Maybe this is just me, but I've always felt ice cream and chocolate products feel kind of thick and sticky in my mouth, not a sensation you want when you're recovering from oral surgery. Sorbet doesn't cause that sensation and made me feel less gross.
    - Brown Sugar Cinnamon Poptarts are actually really good second day foods. They're just soft enough to chew with your front teeth alone, easy to bite, and a nice change from cold dessert products. A single pop-tart is over 200 calories, so if you don't feel like eating anything they'll keep your blood sugar up.

    Creagan on
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    ChimeraChimera Monster girl with a snek tail and five eyes Bad puns, that's how eye roll. Registered User regular
    So first off, I have the largest lower canines he has ever seen. Secondly, it seams the problem is that I have a reaper hidden in my molar....

    10478170_10204332240620084_2735459857993355407_n.jpg?oh=7b5e51b083acad7dcdcc9aac2a5c7f03&oe=5505AE80

    ...but seriously, my molar posed a challenge because it had an extra root and point on the crown. They said my roots were also much more tangled and curved than normal. Fun fact it also takes more anesthetic and gas than normal to numb me. Now I go see my dentist to get a crown installed and an oral surgeon to have my four wisdom teeth removed. If you look on the left of the x ray you can see one of my wisdom teeth that is severely impacted.

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    DaMoonRulzDaMoonRulz Mare ImbriumRegistered User regular
    Where does one find a dentist that is familiar with Chimera anatomy?

    3basnids3lf9.jpg




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    ChimeraChimera Monster girl with a snek tail and five eyes Bad puns, that's how eye roll. Registered User regular
    DaMoonRulz wrote: »
    Where does one find a dentist that is familiar with Chimera anatomy?

    Greece I imagine......

    Actually this would explain some of the trouble my Oklahoman DDS was having with the procedure.

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    StaleStale Registered User regular
    They had to saw open my lower jaw to get mine out.

    I can't, in good conscious, recommend that.

    Avoid jaw sawing if you can. That's the take-away here.

    easysig2.jpg
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    I'll be the opposite of everyone else then - my wisdom tooth removal was pretty easy, I was awake through the whole thing, the only odd part of one of my teeth shattered and they had to fish pieces out but it didn't hurt. Back on solid food the next day. I've also had a 'partial' root canal with no crown on it which didn't hurt at all, and I've had a molar and a pre-molar pulled. The only advice I would give you is 1: don't spit out the blood, it makes you bleed more and 2: if you can, go to sleep afterward.

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    MadEddyMadEddy Creepy house watching youRegistered User regular
    I had to be put under because they removed all four wisdom teeth + an impacted baby and permanent molar. Then I had to avoid hard foods for three months or risk breaking my jaw.

    ruby-red-sig.jpg
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    jgeisjgeis Registered User regular
    I got to keep my wisdom teeth!

    Which is weird because the dentist always commented on how small my mouth is.

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    DaMoonRulzDaMoonRulz Mare ImbriumRegistered User regular
    I don't think I've had wisdom teeth

    3basnids3lf9.jpg




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    ChimeraChimera Monster girl with a snek tail and five eyes Bad puns, that's how eye roll. Registered User regular
    They can maybe pull the lower ones but will have to cut out the upper ones.

    295wly0.jpg

    The red arrows show each wisdom tooth. The pink line is my gum line on the jaw, showing how they are only partially erupted. Due to crowding they won't fully erupt and so they need to be removed. The upper ones are vertically impacted and cannot be seen in my mouth and so they will have to remove some bone to get to both.

    The purple arrow is showing a filling i had as a little chi monsterette. :D

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    RayzeRayze Registered User regular
    I had my wisdom teeth removed two at a time, first time the bottom then the top (could've been the other way around though). The first recovery was a little more painful than the second but nothing horrible came of it and I was back to normal after a week or so. I had anesthesia so I was completely unaware of the procedure and woke up loopy for a little while afterwards. Just remember to rest and eat the softest foods possible


    On an unrelated note, I wish I could take a PTO day for relaxation purposes instead of being sick. Following my new fodmaps diet has helped but today was the first day since I started that I was tied to the bathroom and had to go home after going back and forth for more than an hour

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    QuantumTurkQuantumTurk Registered User regular
    I also recommend going under for the wisdom teeth. I had all mine out in one go, they did some gas, told me "If you keep breathing so deeply you will pass out (it was good gas!)" I giggled, made fun of my surgeons name, and they started the IV. I woke up at sonic, yelling at mom that she was not ordering my milkshake right. She got her revenge, the next time I awoke I was in bed, some blood on the pillow next to me, and the exorcist playing on the TV. Beyond that, didn't even need the pain meds! And all of my wisdom teeth had looked like they were making beelines for the other teeth, so I'm pretty sure some cutting into jaw was required all around.

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    NightDragonNightDragon 6th Grade Username Registered User regular
    I had all four of mine out at once, and absolutely opted to be put under for it. The idea of being awake for that horrified me.

    I apparently woke up just from the pain of the dentist giving me multiple quick shots of Novacaine, I heard him say "patient coming out of anesthesia" and then promptly went back under.

    Upon waking he told me that they had to give me enough meds to keep a 225 lb. football player under.

    I'm 135 lbs.

    Woo!

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    ChimeraChimera Monster girl with a snek tail and five eyes Bad puns, that's how eye roll. Registered User regular
    I had all four of mine out at once, and absolutely opted to be put under for it. The idea of being awake for that horrified me.

    I apparently woke up just from the pain of the dentist giving me multiple quick shots of Novacaine, I heard him say "patient coming out of anesthesia" and then promptly went back under.

    Upon waking he told me that they had to give me enough meds to keep a 225 lb. football player under.

    I'm 135 lbs.

    Woo!

    Are you a redhead too? :D

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    LiiyaLiiya Registered User regular
    I have a wisdom tooth making itself known right now.

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    ChimeraChimera Monster girl with a snek tail and five eyes Bad puns, that's how eye roll. Registered User regular
    edited December 2014
    Liiya wrote: »
    I have a wisdom tooth making itself known right now.

    Mine must be jealous of my #3 molar getting attention today because my lower wisdom teeth have decided now would be a good time for inflammation.

    Judging by your avatar, I like to think of your molars being all prim and proper about it like an elegant victorian lady. Or maybe it is just the other teeth complaining about the lack of manors your wisdom teeth have. Maybe the pain being felt is them expressing this:

    Countess Aberdeen Canine: "Good heavens, I do say that shelly over there is quite the balloon-juice lowerer! Just look how she crowds and lays about, unable to carry herself."

    Virginia Molar: "Oh dear, it seems you're right Aberdeen. But it is to be expected. Why the whole Wisdom family is nothing but a flock of muck snipes! Always late to the ball, it's rather a fifteen puzzler why they shunned their cotillion classes."

    At this point the four Incisors sisters would just have a good giggle as they covered their mouths with their dainty fingers and the whole lot would turn away as if to ostracize the clumsy and rather brash yet misunderstood wisdom teeth.

    Chimera on
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    PsykomaPsykoma Registered User regular
    I was put under when I had my four wisdom teeth removed.
    A+ Would reccomend.

    Also was put under when the doctor broke my jaw and carved some of it out before stitching it back together.
    Thankful for that one.

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    LiiyaLiiya Registered User regular
    Chimera wrote: »
    Liiya wrote: »
    I have a wisdom tooth making itself known right now.

    Mine must be jealous of my #3 molar getting attention today because my lower wisdom teeth have decided now would be a good time for inflammation.

    Judging by your avatar, I like to think of your molars being all prim and proper about it like an elegant victorian lady. Or maybe it is just the other teeth complaining about the lack of manors your wisdom teeth have. Maybe the pain being felt is them expressing this:

    Countess Aberdeen Canine: "Good heavens, I do say that shelly over there is quite the balloon-juice lowerer! Just look how she crowds and lays about, unable to carry herself."

    Virginia Molar: "Oh dear, it seems you're right Aberdeen. But it is to be expected. Why the whole Wisdom family is nothing but a flock of muck snipes! Always late to the ball, it's rather a fifteen puzzler why they shunned their cotillion classes."

    At this point the four Incisors sisters would just have a good giggle as they covered their mouths with their dainty fingers and the whole lot would turn away as if to ostracize the clumsy and rather brash yet misunderstood wisdom teeth.

    Hahaha funnily enough you're right! They are being quite good so far. One came through last year and fitted in with my teeth perfectly, so thats good. I think this one might do too, I still wear a retainer at night so I think that has something to do with it.

    No full inflammation yet for me, I hope yours calms down!

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    poshnialloposhniallo Registered User regular
    I had wisdom teeth out, pretty severe removal where I was sent to a dental hospital because the normal clinic didn't feel up to it, and it took 2 or 3 hours for the procedure. I had local anesthetics only, and I preferred knowing what was going on to just being knocked out. That removed a lot of the anxiety for me. But maybe I'm just weird and this is useless advice?

    I figure I could take a bear.
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