Did not read what was being talked about in the post you're responding to, but just real quick, as someone who has struggled with an auto-immune disorder and watched family members deteriorate from them:
*Often* auto-immune diseases are more like chronic medical problems than disabilities. You can live with one and, with medicine and some proactive actions, lead a pretty normal, active life. Think of it like having any other chronic condition where you, say, take a pill every morning and stay away from a particular food, or something. You follow the rules, you are normal 98% of the time, etc.
But autoimmune diseases CAN be really severe, or you can have a low level one like above and have it flare up into something severe for a short time (or just stay like that). Because of this, there are definitely people for whom an auto-immune disease *is* a disability, and both is, and should be treated as such.
For quick example (that might be relevant to self experience): say you have a low level auto-immune condition, but when it flares up, you have severe trouble lifting things. You live most of your life not being disabled in any way, but when you flare up, you can use the rules in place for disabilities to, say, not lift things at your job that day, or have a helper of some kind assigned to you. Or just not lose your job by staying home.
the anon above me is absolutely right in that some individuals with chronic auto-immune diseases can function perfectly fine without being on disability. it really varies per patient. unfortunately in my case, my Wegeners has affected me enough both financially and medically that I was approved for Medicare and Social Security Disability in 2010 (having applied in 2009 and had to wait full year to be approved) and have been told I'm unable to return to work or school until I receive an OK from my rheumatologist and internal medicine doctor.
the reason for this is due to the amount of damage the Wegeners did to my body before it was fully diagnosed as well as how difficult it's been to keep it well controlled, even with treatment. for the people who have auto-immune diseases but are still able to lead active lives, this is usually because said disease is either in remission or controlled enough that it doesn't affect their daily lives aside from the occasional flare. however, even with treatment, it's been very difficult for my doctors to get my Wegeners to a level that's considered safe. as a result, i've been put on a variety of medications that can cause some severe side-effects, including two types chemotheraphy that have left me immunocompromised. the chemo also gives me chronic fatigue, nausea, weakness, making it difficult to be outside the house for extended periods of time or take part in most normal activities. for example, i went from being someone very active that hiked, swam, and camped a lot to being unable to walk more than half a mile without getting very weak.
and setting all that aside, the Wegeners causes severe joint pain and swelling, so it's not uncommon for me to be laid up in bed because of it. it's sometimes bad enough that i have to use the narcotic pain medication prescribed for me in order to find some relief (which i really hate because narcotic pain meds can really fuck with a person and at one point, i was on morphine all the time). and when that doesn't work, i usually have to make a trip to the ER because that's really my only option when the pain is that severe. i also have Fibromyalgia, which often adds to that pain. thanks to the length of time it took my original doctors to even catch and diagnosed the Wenegerers, i have 80% hearing loss in my right ear thanks to the damage caused by granulomas and the numerous surgeries i've had done when my ENTs were trying to determine why I was getting ear infections so frequently (this was before I was diagnosed with Wegeners).
there's also the position of my Wegeners that has to be closely monitored. while most patients develop Wegeners in their kidneys or lungs, my has mostly manifested in my sinuses and middle/inner ears. which puts it dangerously close to my brain, so my doctors have me get CT scans every six months and MRIs every year to ensure to doesn't worsen or move to my brain. it still affects my lungs and kidneys to some extent, so i have some damage that makes it hard for me to breathe at times.
and like i mentioned, because of the medications and chemo, i'm immunocompromised, making it easier for me to contract viruses and infections if i'm around too many people or in an unsanitary setting. i just had a recent stay in the hospital for the umpteenth time because i came down with MRSA and had to be given heavy-duty IV antibiotics and be closely monitored. because they had to do SIX INDs, i was under closed conditions where i wasn't able to have contact with anyone but my doctors and nurses (who all had to be fully scrubbed up before entering the room. not much fun, i can tell you).
all this is on top of pre-existing mental health disorders (lol 'cause to make everything soooo much easier on me, i also have PTSD, OCD, and Major Depression/Anxiety disorder. all of which are being treated but can be exacerbated by some of the medications i take for Wegeners). and when people apply for SSD, there are certain things taken into consideration, such as the current economy/job market and the amount of education the patient has. since i was diagnosed while still in school, and thus had to drop out, SSD has determined that i don't have enough education to get a job that would afford me the benefits i need to pay for and cover my medical expenses, or even give me the freedom i'd need for days when i'm bad off. at most, i can only work 2-3 days a week, if i'm lucky. and then, it's usually a couple hours at a time. plus, treatment can be fucking expensive as hell, 'cause even when i was still on my mother's medical insurance and being covered 80%, i was still paying some $1300+ out of pocket for every chemo infusion i got. and i get 8 a year on top of regular medications, my weekly chemo shots and all the equipment that goes with them, CT scans, MRIs, and blood tests ever three months.
when i can afford it and am able to save up enough money, i take online classes through the community college in order to slowly build up my credits for when i'm able to get back out in the world again. i'm also a trained pharmacy assistant, so i have that under my belt, but that position usually requires quite a bit of standing, lifting, and other movements that i'm only able to do in small increments. and most pharmacies don't bother hiring limited part-time employees when they can hire people who are able to work full time.
that's basically how it affects me and why i'm disabled. i certainly don't enjoy being disabled, which is why i always keep up with my treatments, and because i'm disabled, it's affected my mental health a bit by making my depression sometimes worse. but i'm working at it in hopes that i can return to the normal work force/school as soon as my doctors OK it. but that's just how it applies to me. otherwise, a lot of people can live just how the anon above described things.
I like how you wrote a five paragraph essay on this but failed to address or even acknowledge any of the concerns outlined below. I'm aware life isn't fun for you, and all that pain can make anyone cranky, but you really do need to examine your own behavior more closely. It's really turning off people from interacting with you.
I don't know if above anon was right about fishing for pity, but all this information was definitely unnecessary.
even if your ooc behavior sucks sometimes (i don't know either way, i don't know you), i'm disgusted by the above anons saying that you're fishing for pity. you deserve sympathy for your health problems. this is a fucking lot to deal with and more people should recognize that.
but knock off the other shit people are bringing up if you're still doing it.
to everyone else: it's not okay to act like someone's health problems are no big, or that mentioning them is only fishing for sympathy, just because you dislike them personally and/or in rp. (i've seen this happen with tally a lot, too.) you can dislike someone and still acknowledge that they have serious problems to deal with.
you're not on her plurk. she plurks about this incessantly. there's a fine line between sympathy and fishing for pity and hales absolutely crosses it. see: the fucking pointless tl;dr you just replied to.
i have a serious chronic condition myself and i'm not expected to live past my 30s. do i plurk about it constantly? no. do i vomit out massive blocks of text to strangers on anoncomms? no. hales has a history of trolling the comms here because she loves the attention and she loves skipping back to her plurk just so she can point and laugh LOLOLOL LOOK AT HOW DUMB ANON IS before she goes right back to boohooing about art theft (hint: just because you spent 9000 hours in photoshop on your 100x100 icon doesn't make it art) and writing rants about fucking anime characters no one gives two shits about.
as other anons have said she needs to stfu already and go through some behavior modification stat. insufferable to deal with and a pain in the ass even on her best days.
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wankgate2012-09-10 01:41 am
no subject
(Anonymous) 2012-09-13 03:45 pm (UTC)(link)no subject
(Anonymous) 2012-09-13 04:13 pm (UTC)(link)*Often* auto-immune diseases are more like chronic medical problems than disabilities. You can live with one and, with medicine and some proactive actions, lead a pretty normal, active life. Think of it like having any other chronic condition where you, say, take a pill every morning and stay away from a particular food, or something. You follow the rules, you are normal 98% of the time, etc.
But autoimmune diseases CAN be really severe, or you can have a low level one like above and have it flare up into something severe for a short time (or just stay like that). Because of this, there are definitely people for whom an auto-immune disease *is* a disability, and both is, and should be treated as such.
For quick example (that might be relevant to self experience): say you have a low level auto-immune condition, but when it flares up, you have severe trouble lifting things. You live most of your life not being disabled in any way, but when you flare up, you can use the rules in place for disabilities to, say, not lift things at your job that day, or have a helper of some kind assigned to you. Or just not lose your job by staying home.
tl;dr feel free to ignore this
the reason for this is due to the amount of damage the Wegeners did to my body before it was fully diagnosed as well as how difficult it's been to keep it well controlled, even with treatment. for the people who have auto-immune diseases but are still able to lead active lives, this is usually because said disease is either in remission or controlled enough that it doesn't affect their daily lives aside from the occasional flare. however, even with treatment, it's been very difficult for my doctors to get my Wegeners to a level that's considered safe. as a result, i've been put on a variety of medications that can cause some severe side-effects, including two types chemotheraphy that have left me immunocompromised. the chemo also gives me chronic fatigue, nausea, weakness, making it difficult to be outside the house for extended periods of time or take part in most normal activities. for example, i went from being someone very active that hiked, swam, and camped a lot to being unable to walk more than half a mile without getting very weak.
and setting all that aside, the Wegeners causes severe joint pain and swelling, so it's not uncommon for me to be laid up in bed because of it. it's sometimes bad enough that i have to use the narcotic pain medication prescribed for me in order to find some relief (which i really hate because narcotic pain meds can really fuck with a person and at one point, i was on morphine all the time). and when that doesn't work, i usually have to make a trip to the ER because that's really my only option when the pain is that severe. i also have Fibromyalgia, which often adds to that pain. thanks to the length of time it took my original doctors to even catch and diagnosed the Wenegerers, i have 80% hearing loss in my right ear thanks to the damage caused by granulomas and the numerous surgeries i've had done when my ENTs were trying to determine why I was getting ear infections so frequently (this was before I was diagnosed with Wegeners).
there's also the position of my Wegeners that has to be closely monitored. while most patients develop Wegeners in their kidneys or lungs, my has mostly manifested in my sinuses and middle/inner ears. which puts it dangerously close to my brain, so my doctors have me get CT scans every six months and MRIs every year to ensure to doesn't worsen or move to my brain. it still affects my lungs and kidneys to some extent, so i have some damage that makes it hard for me to breathe at times.
and like i mentioned, because of the medications and chemo, i'm immunocompromised, making it easier for me to contract viruses and infections if i'm around too many people or in an unsanitary setting. i just had a recent stay in the hospital for the umpteenth time because i came down with MRSA and had to be given heavy-duty IV antibiotics and be closely monitored. because they had to do SIX INDs, i was under closed conditions where i wasn't able to have contact with anyone but my doctors and nurses (who all had to be fully scrubbed up before entering the room. not much fun, i can tell you).
all this is on top of pre-existing mental health disorders (lol 'cause to make everything soooo much easier on me, i also have PTSD, OCD, and Major Depression/Anxiety disorder. all of which are being treated but can be exacerbated by some of the medications i take for Wegeners). and when people apply for SSD, there are certain things taken into consideration, such as the current economy/job market and the amount of education the patient has. since i was diagnosed while still in school, and thus had to drop out, SSD has determined that i don't have enough education to get a job that would afford me the benefits i need to pay for and cover my medical expenses, or even give me the freedom i'd need for days when i'm bad off. at most, i can only work 2-3 days a week, if i'm lucky. and then, it's usually a couple hours at a time. plus, treatment can be fucking expensive as hell, 'cause even when i was still on my mother's medical insurance and being covered 80%, i was still paying some $1300+ out of pocket for every chemo infusion i got. and i get 8 a year on top of regular medications, my weekly chemo shots and all the equipment that goes with them, CT scans, MRIs, and blood tests ever three months.
when i can afford it and am able to save up enough money, i take online classes through the community college in order to slowly build up my credits for when i'm able to get back out in the world again. i'm also a trained pharmacy assistant, so i have that under my belt, but that position usually requires quite a bit of standing, lifting, and other movements that i'm only able to do in small increments. and most pharmacies don't bother hiring limited part-time employees when they can hire people who are able to work full time.
that's basically how it affects me and why i'm disabled. i certainly don't enjoy being disabled, which is why i always keep up with my treatments, and because i'm disabled, it's affected my mental health a bit by making my depression sometimes worse. but i'm working at it in hopes that i can return to the normal work force/school as soon as my doctors OK it. but that's just how it applies to me. otherwise, a lot of people can live just how the anon above described things.
no subject
(Anonymous) 2012-09-13 08:53 pm (UTC)(link)no subject
(Anonymous) 2012-09-14 04:55 am (UTC)(link)I don't know if above anon was right about fishing for pity, but all this information was definitely unnecessary.
no subject
(Anonymous) 2012-09-14 05:38 pm (UTC)(link)will you stop thinking of yourself
for two fucking seconds
jesus christ on a cracker
Re: tl;dr feel free to ignore this
(Anonymous) 2012-09-14 10:58 pm (UTC)(link)but knock off the other shit people are bringing up if you're still doing it.
to everyone else: it's not okay to act like someone's health problems are no big, or that mentioning them is only fishing for sympathy, just because you dislike them personally and/or in rp. (i've seen this happen with tally a lot, too.) you can dislike someone and still acknowledge that they have serious problems to deal with.
Re: tl;dr feel free to ignore this
(Anonymous) 2012-09-14 11:53 pm (UTC)(link)ayrt
(Anonymous) 2012-09-15 12:29 am (UTC)(link)-1000000
(Anonymous) 2012-09-15 04:36 am (UTC)(link)i have a serious chronic condition myself and i'm not expected to live past my 30s. do i plurk about it constantly? no. do i vomit out massive blocks of text to strangers on anoncomms? no. hales has a history of trolling the comms here because she loves the attention and she loves skipping back to her plurk just so she can point and laugh LOLOLOL LOOK AT HOW DUMB ANON IS before she goes right back to boohooing about art theft (hint: just because you spent 9000 hours in photoshop on your 100x100 icon doesn't make it art) and writing rants about fucking anime characters no one gives two shits about.
as other anons have said she needs to stfu already and go through some behavior modification stat. insufferable to deal with and a pain in the ass even on her best days.