I did not realize crohns was so debilitating. I guess I do not really know very much about it. Makes my mental stuff seem tame by comparison.
Gamertag: KL Retribution
PSN:Furlion
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I will give a more detailed post when I am st my computer and not on my phone, most people don't know about Chronic Illnesses that aren't cancer..
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Man, the room I ended up in is so fancy and the nurses and doctors are so nice now.
It is an incredible flip from how rude, flippant, sassy, and discourteous people were in the ER. I mean Jesus Christ Almighty. One nurse kept bumping into my NG tube as he was putting EKG markers on me and I grabbed his arms and told him to stop doing that. He sighed and said "the tube is taped in it won't come loose" and kept doing what he had been doing, bumping into the fucking tube. I had to grab his arms again and slowly tell him that it popping out wasn't the issue, it was that every time he bumped it it hurt like FUCKING HELL.
Humor can be dissected as a frog can, but dies in the process.
Hope you recover soon Munkus Beaver. Glad to hear you're at least in place that competent and not making the experience worse than it needs to be.
On other news, I was just stopping by to mention I wish I had known about the existence of Shingrix earlier. Apparently, we have a non-live vaccine for shingles, so I'm definitely going to see if my doctor has even looked into it yet. As I mentioned long ago, I'm on remicade, so I can't get live vaccines. I've already had shingles once, while it could have been much worse, it was still an awful experience. So I'd love to be able to reduce my chances of getting it again without have to get off of remicade long enough to take the current vaccine, which can create it's own complications (like developing an allergic reaction to remicade, which I gather can happen if one is off of it long enough). I'm hoping though that stuff using CRISPR advances enough that they can start treating certain conditions better than the current stuff we have now (I'm hoping that leads to a break through where my AS isn't being just managed and kept in check, I'd like treatment to hit a point where it can be solved and damage undone, but knowing my luck that might not be in my lifetime).
I will give a more detailed post when I am st my computer and not on my phone, most people don't know about Chronic Illnesses that aren't cancer..
especially auto immune stuff because until you live it you just can't really conceptualize that your body's immune system is trying to kill you, or at least really fuck you up, and a lot of the ways we talk about it makes it seem semi-trivial like yeah, psoriasis causes itchy flakes, celiac causes death farts, but the reality is those are the surface expressions of some kind of bonkers shit under the surface where your immune system is just like "fuck that thing I HATE THAT THING I'M GONNA KILL IT"
plus plus people underestimate how awful a simple sounding thing can be. I've had a psoriasis flare in one patch so bad that the itching and pain sent me to the ER (this was before I knew what it was, and the ER did not help at all)
that's without even getting into the joy of "the thing my immune system hates is my intestines, which could kill me dead"
i've had three close friends with crohn's and that shit is a complete nightmare. my absolutely most sincere condolences
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I am going home today!
And it looks like I am going to have in the next few months...
Drumroll please.....
......
.....surgery for an ostomy revision.
Aka they are gonna remove some intestines.
If anyone wants to just kill me now and save me the trouble, just go right ahead.
Humor can be dissected as a frog can, but dies in the process.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Ugh I am finally fucking home.
Finally fucking home.
Ok I'll write up something about Crohn's and shit later when I am not so tired and bored.
Humor can be dissected as a frog can, but dies in the process.
"so I'm supposed to collect a copay from you, but... The reason for the visit here is making me not want to collect it, so you can just take a seat."
... Ok dude. O_o
"Spontaneously combusts when asked for payment"
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
We don't have the money to go up to Mayo this time, so it seems like I will be having surgery done psuedo-locally for the first time at Vanderbilt, which honestly scares the shit out of me.
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Probably gonna leave for the hospital in the next few minutes (the Nashville one) because nothing has come out of my Ostomy in the past four hours or so.
This is what, fourth or fifth time? I thiiiiiiiiink they should just do surgery while I'm up there this time and not just, you know, send me the fuck home after using a balloon to stretch shit.
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
So yeah, I am back in the hospital :rotate:
But I brought my 3DS with me and a classic game with great music that I am now replaying since I found it a few months ago while cleaning.
The World Ends With You
Seriously, why didn't they ever make a sequel to this
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Met with some surgeons today, but not the one(s) who would be doing the cutting. They agree that surgery needs to happen but aren't sure if I'd be able to get it done this visit. And I am all.....fucking seriously? I can't keep going home like this.
Humor can be dissected as a frog can, but dies in the process.
I'm on the very, very low end of the migraine spectrum, in that I only get them when my sleeping is severely disrupted, the pre-onset visual artefacts are minimal, and I can ride them out in a dark room with an anti-nausea tablet and a couple of panadol. I had a very nasty one a view years ago though, when I was trying to make a graveyard-shift job work for me (I couldn't). I can't imagine what it must be like to have them all the time.
I get them. I just take off for the day (or stay home).
I can't really look at a computer for a few hours when mine hits. And my job is entirely computer based. I've found trying to "work through it" doesn't really ever work and just makes it worse and last a lot longer. If I immediately peace out mine only last like half a day. If I push myself it can bleed into a 2nd day.
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
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Did a scope and dialation, waiting to hear back from doctors on what things look like.
Humor can be dissected as a frog can, but dies in the process.
I'm still sore on my lower left side and I'm done with my antibiotics. God I'm so fucking anxious about this. Amazing what nearly dying will do for your anxiety levels. We have non refundable tickets to a museum event to celebrate our anniversary a few days early and I just keep thinking about last year where we went to the art museum for Halloween (our anniversary) and we left early because I was feeling punky and two weeks later I was in the hospital. I don't want a repeat and I'm scared to death I'm gonna get one... I'm sure the anxiety doesn't help but I don't know how to stop
I've read that re-framing anxiety as "excitement" can help.
But what I usually do for that sort of thing is go, "Okay, well, this isn't a thing that will set off [problem.] This is a test to see whether or not doing this thing will cause [problem] again. And if it does cause the problem, I'll at least know what to expect so it still won't be as bad as last time." Or something like that. Basically, don't tell yourself the scary thing won't happen, because your anxiety isn't going to listen. If it was, you wouldn't have the anxiety in the first place.
Tell yourself you're prepared for the scary thing, and it won't be as bad. That your brain's more likely to listen to.
The re-framing concept is how I got over my anxiety. Basically think of the nervousness as being something exciting. Obviously easier said then done, and it took a while, but that is what got me through it. This was about 10 years ago now when I was in college.
Odd side effect is I now love Horror films, which I never used to be able to watch.
My anxiety was pretty bad as well, at it's worst I wasn't able to get on any public transportation without passing out.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Surgery Wednesday afternoon guys.
Ostomy revision.
Can possibly be out of the hospital by Thursday at the earliest.
I am happy to have a surgery date and get this fixed but holy shit am apprehensive about having this done here.
Humor can be dissected as a frog can, but dies in the process.
I'm on the very, very low end of the migraine spectrum, in that I only get them when my sleeping is severely disrupted, the pre-onset visual artefacts are minimal, and I can ride them out in a dark room with an anti-nausea tablet and a couple of panadol. I had a very nasty one a view years ago though, when I was trying to make a graveyard-shift job work for me (I couldn't). I can't imagine what it must be like to have them all the time.
I am lucky that my migraines are mostly 'in absentia', so I don't get severe pain, but unlucky in that what I do get instead is massive neural symptoms - blind spots, chains in my vision, numbness, severe aphasia, my proprioception which is shaky at the best of times thanks to dyspraxia becomes a serious issue - uhh my sense of myself in space is fucked up so I run into things is what that means. with migraine onset I go from "mystery bruise" level to straight up slamming into things hard, spilling things, knocking things over, etc. so the pain isn't really incapacitating, about on par with a normal sinus headache plus some barfy feelings, but the "aura" means I can't do preeeeeeeetty much anything. I can stare at a computer monitor just fine! but don't expect me to be able to see half of the words, or comprehend what little I can see, because my brain decides to stop understanding simple words or use the wrong ones without my notice (I once told my ex to shut off the pond because it was too bright, and told a friend I didn't like to wear shirts) which used to REALLY freak me out until my ex taught me to think of it as funny.
mine seem to be related to my hormone levels and resolve almost entirely with estrogen birth control while flaring severely with progestin birth control, but, haha cruel joke, I can't get estrogen birth control because I get migraines with aura! the time they put me on progestin shots/depo, which is how I found out no bueno, I went from one-two every few months in times of high stress or using strong chemical cleaners to 2-4 a month with severe pain AND the severe neural shit strong enough that an ER doctor gave me dilaudid/phenergan combo. 0/10 do not recommend
I had almost daily migraines for years without realizing that's what they were, because I don't really get auras or anything. Just pain and sometimes nausea. Then I started seeing my current neurologist for something else and he put me on migraine prophylaxis on a hunch, and it worked, mostly! Mine are mostly triggered by the damage in my neck.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
So surgery is tomorrow.
And I got to the part in twewy where you have to team up with Joshua.
Ugh. this guy is the worst. I forgot how much his numbers crap just sucked.
Humor can be dissected as a frog can, but dies in the process.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I just taught my nurse like, three recipes she could make on the cheap and on the fly. She said she's gonna write down the southwestern chicken broth one right now because it sounded delicious.
That's me.
Teaching nurses random shit.
And now I'm hungry cause I am on a full liquid diet until after the surgery, and NPO after midnight
Humor can be dissected as a frog can, but dies in the process.
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valhalla13013 Dark Shield Perceives the GodsRegistered Userregular
I recently went to the VA for the first time in almost 20 years and enrolled. Turns out, they diagnosed me in 1998 with degenerative arthritis, and I wish they had communicated that to me, because that would have explained an awful lot.
Still, they've been wonderful this time around. In fact, better than my civilian doctor's have been.
+7
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knitdanIn ur baseKillin ur guysRegistered Userregular
NPO is the wooorst
Especially if they don't get to you in the morning right away so you're just sitting there waiting and your stomachs growling and you're like let's get this show on the road so I can stop thinking about how hungry I am
“I was quick when I came in here, I’m twice as quick now”
-Indiana Solo, runner of blades
I watched food network while I was npo for over a week, everybody at the hospital thought I was crazy
fucking a my psoriasis is driving me bonkers, I really need to get back on my biologic. it's like having bug bites from hell, only all over my scalp and lower back, and if I scratch I shed flakes everywhere and look gross, it is maddening
Any other fibromyalgia havers around with maybe some weird fixes they have for the constant pain? Mine's been getting steadily worse and none of the conventional suggestions (warm baths, stretching, etc) are really working for me.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Alright, about to go do surgery. I am in the waiting area so it could be any minute that I have to put down the phone and go. I am pretty apprehensive about this and a bit scared since it's my first non-Mayo surgery but...what can ya do when you're out of money and options, ya know?
Humor can be dissected as a frog can, but dies in the process.
Alright, about to go do surgery. I am in the waiting area so it could be any minute that I have to put down the phone and go. I am pretty apprehensive about this and a bit scared since it's my first non-Mayo surgery but...what can ya do when you're out of money and options, ya know?
I hope it turns out well, best wishes bro.
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
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knitdanIn ur baseKillin ur guysRegistered Userregular
I don't have fibromyalgia but I do have other chronic pain. Most of the time I just live with it, but occasionally I'll take a dose or two of cannabis edibles to take the sharp edge off the pain. Not sure if that's an option for you though, I live in a legal cannabis state.
“I was quick when I came in here, I’m twice as quick now”
-Indiana Solo, runner of blades
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I am out. Half an inch of intestines lighter. Ugh, so sore.
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
edited November 2017
Holy shit it is hard to follow which thread I am in right now with the stuff I am on.
Like, thank God for favorite threads or I would never find this one again. Jesus, please be patient with me right now because I am not in the best condition.
Munkus Beaver on
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
edited November 2017
Oh, we can add ketamine to the list of pain mess I can't take because it seems to make me shake uncontrollably.
Jesus Christ
Like, my my hands and eyes are still twitching uncontrollably. Reading is a bitch. As is writing or playing games.
Munkus Beaver on
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I am going home tomorrow!!!
Humor can be dissected as a frog can, but dies in the process.
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
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Any other fibromyalgia havers around with maybe some weird fixes they have for the constant pain? Mine's been getting steadily worse and none of the conventional suggestions (warm baths, stretching, etc) are really working for me.
Something my sisters pain therapist recommended for nerve pain is textural distraction - find something mildly rough or bumpy, and rub it lightly on or near any areas that are flaring up. The idea is that your nerves can only carry so many signals at once - a novel sensation often takes priority over the pain.
With things like fibro, or nerve disorders, your body is basically setting up a self reinforcing feedback loop where it gets really really great at registering pain, so anything that breaks/disrupts that cycle can help long term as well as short.
I can ask her for any other non-medical tricks she might have, will post in here if she's got anything good.
Posts
PSN:Furlion
It is an incredible flip from how rude, flippant, sassy, and discourteous people were in the ER. I mean Jesus Christ Almighty. One nurse kept bumping into my NG tube as he was putting EKG markers on me and I grabbed his arms and told him to stop doing that. He sighed and said "the tube is taped in it won't come loose" and kept doing what he had been doing, bumping into the fucking tube. I had to grab his arms again and slowly tell him that it popping out wasn't the issue, it was that every time he bumped it it hurt like FUCKING HELL.
On other news, I was just stopping by to mention I wish I had known about the existence of Shingrix earlier. Apparently, we have a non-live vaccine for shingles, so I'm definitely going to see if my doctor has even looked into it yet. As I mentioned long ago, I'm on remicade, so I can't get live vaccines. I've already had shingles once, while it could have been much worse, it was still an awful experience. So I'd love to be able to reduce my chances of getting it again without have to get off of remicade long enough to take the current vaccine, which can create it's own complications (like developing an allergic reaction to remicade, which I gather can happen if one is off of it long enough). I'm hoping though that stuff using CRISPR advances enough that they can start treating certain conditions better than the current stuff we have now (I'm hoping that leads to a break through where my AS isn't being just managed and kept in check, I'd like treatment to hit a point where it can be solved and damage undone, but knowing my luck that might not be in my lifetime).
battletag: Millin#1360
Nice chart to figure out how honest a news source is.
especially auto immune stuff because until you live it you just can't really conceptualize that your body's immune system is trying to kill you, or at least really fuck you up, and a lot of the ways we talk about it makes it seem semi-trivial like yeah, psoriasis causes itchy flakes, celiac causes death farts, but the reality is those are the surface expressions of some kind of bonkers shit under the surface where your immune system is just like "fuck that thing I HATE THAT THING I'M GONNA KILL IT"
plus plus people underestimate how awful a simple sounding thing can be. I've had a psoriasis flare in one patch so bad that the itching and pain sent me to the ER (this was before I knew what it was, and the ER did not help at all)
that's without even getting into the joy of "the thing my immune system hates is my intestines, which could kill me dead"
And it looks like I am going to have in the next few months...
Drumroll please.....
......
.....surgery for an ostomy revision.
Aka they are gonna remove some intestines.
If anyone wants to just kill me now and save me the trouble, just go right ahead.
Finally fucking home.
Ok I'll write up something about Crohn's and shit later when I am not so tired and bored.
... Ok dude. O_o
"Spontaneously combusts when asked for payment"
This is what, fourth or fifth time? I thiiiiiiiiink they should just do surgery while I'm up there this time and not just, you know, send me the fuck home after using a balloon to stretch shit.
But I brought my 3DS with me and a classic game with great music that I am now replaying since I found it a few months ago while cleaning.
The World Ends With You
Seriously, why didn't they ever make a sequel to this
I'm on the very, very low end of the migraine spectrum, in that I only get them when my sleeping is severely disrupted, the pre-onset visual artefacts are minimal, and I can ride them out in a dark room with an anti-nausea tablet and a couple of panadol. I had a very nasty one a view years ago though, when I was trying to make a graveyard-shift job work for me (I couldn't). I can't imagine what it must be like to have them all the time.
I can't really look at a computer for a few hours when mine hits. And my job is entirely computer based. I've found trying to "work through it" doesn't really ever work and just makes it worse and last a lot longer. If I immediately peace out mine only last like half a day. If I push myself it can bleed into a 2nd day.
The re-framing concept is how I got over my anxiety. Basically think of the nervousness as being something exciting. Obviously easier said then done, and it took a while, but that is what got me through it. This was about 10 years ago now when I was in college.
Odd side effect is I now love Horror films, which I never used to be able to watch.
My anxiety was pretty bad as well, at it's worst I wasn't able to get on any public transportation without passing out.
Ostomy revision.
Can possibly be out of the hospital by Thursday at the earliest.
I am happy to have a surgery date and get this fixed but holy shit am apprehensive about having this done here.
I am lucky that my migraines are mostly 'in absentia', so I don't get severe pain, but unlucky in that what I do get instead is massive neural symptoms - blind spots, chains in my vision, numbness, severe aphasia, my proprioception which is shaky at the best of times thanks to dyspraxia becomes a serious issue - uhh my sense of myself in space is fucked up so I run into things is what that means. with migraine onset I go from "mystery bruise" level to straight up slamming into things hard, spilling things, knocking things over, etc. so the pain isn't really incapacitating, about on par with a normal sinus headache plus some barfy feelings, but the "aura" means I can't do preeeeeeeetty much anything. I can stare at a computer monitor just fine! but don't expect me to be able to see half of the words, or comprehend what little I can see, because my brain decides to stop understanding simple words or use the wrong ones without my notice (I once told my ex to shut off the pond because it was too bright, and told a friend I didn't like to wear shirts) which used to REALLY freak me out until my ex taught me to think of it as funny.
mine seem to be related to my hormone levels and resolve almost entirely with estrogen birth control while flaring severely with progestin birth control, but, haha cruel joke, I can't get estrogen birth control because I get migraines with aura! the time they put me on progestin shots/depo, which is how I found out no bueno, I went from one-two every few months in times of high stress or using strong chemical cleaners to 2-4 a month with severe pain AND the severe neural shit strong enough that an ER doctor gave me dilaudid/phenergan combo. 0/10 do not recommend
And I got to the part in twewy where you have to team up with Joshua.
Ugh. this guy is the worst. I forgot how much his numbers crap just sucked.
That's me.
Teaching nurses random shit.
And now I'm hungry cause I am on a full liquid diet until after the surgery, and NPO after midnight
Still, they've been wonderful this time around. In fact, better than my civilian doctor's have been.
Especially if they don't get to you in the morning right away so you're just sitting there waiting and your stomachs growling and you're like let's get this show on the road so I can stop thinking about how hungry I am
-Indiana Solo, runner of blades
fucking a my psoriasis is driving me bonkers, I really need to get back on my biologic. it's like having bug bites from hell, only all over my scalp and lower back, and if I scratch I shed flakes everywhere and look gross, it is maddening
ineedmayo.com Eidolon Journal Updated
I hope it turns out well, best wishes bro.
-Indiana Solo, runner of blades
Like, thank God for favorite threads or I would never find this one again. Jesus, please be patient with me right now because I am not in the best condition.
Jesus Christ
Like, my my hands and eyes are still twitching uncontrollably. Reading is a bitch. As is writing or playing games.
Actually.....no. I will talk about it When I get home.
Something my sisters pain therapist recommended for nerve pain is textural distraction - find something mildly rough or bumpy, and rub it lightly on or near any areas that are flaring up. The idea is that your nerves can only carry so many signals at once - a novel sensation often takes priority over the pain.
With things like fibro, or nerve disorders, your body is basically setting up a self reinforcing feedback loop where it gets really really great at registering pain, so anything that breaks/disrupts that cycle can help long term as well as short.
I can ask her for any other non-medical tricks she might have, will post in here if she's got anything good.