tag:blogger.com,1999:blog-7984528614609775935.post6777588292551926497..comments2023-10-10T02:00:11.114-07:00Comments on RantaSarah Rex: Let's Talk About Chronic Illnesses!Sarah "Mowgli" Mogliahttp://www.blogger.com/profile/04329767129644882505noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-7984528614609775935.post-21999190125526094722013-01-16T22:41:01.364-08:002013-01-16T22:41:01.364-08:00I read this blog twice and i think that most of th...I read this blog twice and i think that most of the people are not aware of <a href="http://www.johnsonmedicalassociates.com/Services/Treatments/tabid/59/Default.aspx" rel="nofollow"><b>Chronic Illness Treatment</b></a>. I think the problem is that people don't want to accept what is happening to you. They want to maintain their denial. Thanks for sharing the information on chronic illness.jsmedicalhttps://www.blogger.com/profile/07495089099305378044noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-33834751099941575552013-01-03T17:48:52.013-08:002013-01-03T17:48:52.013-08:00I read this article when you first posted (found i...I read this article when you first posted (found it via Greg's site) and wanted to post, but I wasn't feeling up to it then, and now I am. I'm late to the party, but I want to thank you for writing this post. I don't have chronic physical sickness, but a genetic mental illness, and the well-wishers are definitely frustrating sometimes.<br /><br />I once had a family member tell me to just take large doses of Vitamin D to up my mood. I've gotten the 'just exercise' speeches, and those are frustrating because when my energy and mood is so low I literally can't do anything, feeling like I 'should' exercise makes me feel worse. I know that exercise is good. Since when did I NOT know exercise is good?<br /><br />Telling me to cheer up is like a kick in the face. I wholeheartedly agree with you that it's much more helpful for someone to offer to help out or just tell me they are there for me if I need anything. I do feel bad if I can't go out, or I end up flaking. The people most understanding are friends I know that actually have mental illnesses and know that sometimes we just have days where we can't face the world, or even a friend. So text me. I like texting conversations. I don't even have to use my voice.<br /><br />Also, sometimes when I am excited that I improved, I'll tell someone close to me, and they trump it with "well I do that all the time," or they just brush it off, flat-lining my joy. THAT is really a downer. If you want to be my friend and be supportive, be happy for me when I succeed, because those little things are BIG.<br /><br />The "I'm praying for you" bit is actually annoying to me. I know it's meant well, but I get it from my family and they don't do much else than that. I would prefer to have someone to talk to if I need it, and it feels like when they say that they are saying "shut up, it's covered, I'm tired of hearing about it, because the sky-fairy will help you, not me." My mom always used to say "Take it to the Lord, he will listen to you." To me it feels like they are passing the buck instead of really offering to help or caring. Well guess what. I get to deal with this on a daily basis, and it's the meds and therapy that are stabilizing me. I just want a friend, and like you said, let me be scared, because I am scared.<br /><br />What I appreciate about your post is that it has helped me to be more ok about allowing myself to do what I can do, instead of feeling completely overwhelmed and drained because I can't do what everyone thinks I should be doing. So thank you.<br /><br />ps. It's me, Kat, twitterbro and LOTRO buddy.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-90964116014686952162012-11-15T07:27:09.775-08:002012-11-15T07:27:09.775-08:00I, too, found this by way of Science Blogs....&...I, too, found this by way of Science Blogs....& can also totally relate to what you (all of you here) are feeling. 11yrs ago I was at work (Paramedic) & was assaulted by a drunk who had been in a car accident and apparently didn't like that I was trying to take care of him. That was the 1st "popping" sensation, & as I'd later find out, the beginning of the 'domino effect' breakdown & deterioration (both) of my spine. 2yrs later-in 2004, again at work & again on a car accident call, I was running from the ambulance to get to my patients when I slipped on the snow/ice & fell. "Pop" #2. Two years after that (off duty this time) I was lopping off some scraggly tops on the bushes in front of our cabin-I couldn't reach the few on the tops of them so I went inside & figured I'd get them by just leaning/reaching out the window. Big mistake-I couldn't straighten up or get back in the window. That was the 3rd "pop" in my spine...& what would be the end of my career & life as I knew it. At that time I had just the 3 herniated lumbar discs, or so I thought. By this point my primary Dr had sent me to a Pain Management Doc who naturally ordered up a full spine MRI which showed that lurking inside of me was what they believe to be some sort of hereditary condition ("the curse" as I call it) where my spine is literally deteriorating from neck to tailbone. Since that 3rd injury in 2006 I have accumulated 5 more bulging & herniated discs, mainly from falls related to the nerve issues, adding to the Degenerative Disc Disease, Degenerative Joint Disease (almost all of my facet & sacroiliac joints are jacked), Osteoarthritis throughout my spine, Sciatica, Failed Fusion Syndrome (had 2 back surgeries 3 days apart-L2-S1-in 2010), my entire left leg from hip to toes "asleep" permanently, & due to the trauma (so they tell me) I developed Fibromyalgia to top it all off.<br /><br />So basically I go in every 3-4mos or so & get Caudal epidural & Bilateral SI joint steroid injections & live my life on Morphine, Soma, Roxicodone & Lyrica. I spend a good 85% of my existence in bed (because lets face it...this is not "living"-it's merely existing) with pain ranging from 7-10+ on the "pain scale" constantly. <br /><br />Oh-and I can completely sympathize with your Crohn's too as they thought I had it too (blood work ruled it out I guess) but deemed it to be basically just relentless IBS, complete with the lava shit.<br /><br />The whole "But you don't LOOK sick!" thing, quite frankly, pisses me off! Just because I choose to put on my brave face & smile at strangers definitely does not mean I'm not hurting-it means I don't see the need to be a bitch to others just because I'm in pain. It's called respect. Same reason I don't post as my FB or Twitter status that I hurt again today. It's a given & I just don't feel it necessary to 'air my dirty laundry' publicly like that. I can't stand it when my FB newsfeed is full of people who never do anything but bitch, so why should I be like them and add to it, ya know?<br /><br />Have you ever read the "Letter To Normals From A Chronic Pain Person" before? If not-Google "Letter To Normals" & you'll find links. In fact one of the first you'll see should be at a website called Spine-Health (one of my online "hang out spots"). It's really good-basically describes VERY WELL I might add what we go through on a daily basis-very similar to what you've done here. I hope you'll give it a look. EMTgoneNUTZhttps://www.blogger.com/profile/10760254272700658843noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-81736749531877576352012-11-14T18:03:56.911-08:002012-11-14T18:03:56.911-08:00Found your blog via science blogs and tweeted your...Found your blog via science blogs and tweeted your post. Very well written, and I can identify with so many of the items on your list.<br /><br />I think the two I identify with most strongly are "5) "But you're well enough to do x, why can't you do y?" and "8) "I have [temporary minor condition]. I totally know what you're going through." 5 also applies to me on a day to day or week to week basis because sometimes I can do x or y, and sometimes I can't - my condition fluctuates and makes it difficult to plan and cross off to-do lists. 8 is high on my annoyance list, as after I've made a statement about how tired I am to someone in particular (and I am tired between the grinding fatigue I wake up with normally plus the fatigue that comes from being in the ER with pain at 2 am and not sleeping for more than a few hours) that they have to tell me something on the order of, "Tired? Oh, you aren't alone, I am always tired after a long day at work". Which ties into the dig of how if you are disabled and not working, of course you must not have a reason to be fatigued and tired, right? Camp Otherhttps://www.blogger.com/profile/10224408965529778101noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-17510099805859813492012-11-13T08:08:05.454-08:002012-11-13T08:08:05.454-08:00So glad I live in Canada. I still have to pay for...So glad I live in Canada. I still have to pay for half my meds, including Humera shots, but I never have to worry about doctor or hospital bills.Cromhttps://www.blogger.com/profile/15738715624914422294noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-39711328869421384082012-11-13T05:27:49.596-08:002012-11-13T05:27:49.596-08:00You know what drives me up the wall when one or mo...You know what drives me up the wall when one or more of my bazillion distinct causes of depression kicks in? (I have genetic major depression, PMDD, SAD, occasionally medication side effects, and I tend to get mopey from ADHD. All diagnosed by more than one psychiatrist incidentally. Self diagnosers get on my nerves.) <br /><br />"Oh don't feel suicidal because kittens! Every time you feel suicidal god kills a kitten."<br /><br />THAT DOESN'T HELP. <br /><br />Feeling suicidal isn't something that I control, and it's certainly not something that I can just snap out of. I am quite aware of the existence of juvenile carnivorans BUT THAT ISN'T A MEDICAL TREATMENT. It's way more helpful to have people give me support, ("aww *virtual hugs* I hope you feel better"), reassurance ("you'll feel better in a few days, once your hormones go back to normal"), rationality ("you've felt like this before and you've gotten through it and had happy times, so don't think you'll never be happy again"), distractions ("look, I downloaded this new dinosaur game on my tablet, wanna try it?") and chocolate. Although I doubt chocolate would help your guts. <br /><br />I do hope you feel better. Lava shit is very unpleasant. My words with friends username is salanaland, I think. It might be aurorasales. Anonymoushttps://www.blogger.com/profile/04962019114287591854noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-67659052839610398082012-11-13T01:34:14.725-08:002012-11-13T01:34:14.725-08:00My wife has been disabled for over 20 years and pe...My wife has been disabled for over 20 years and people still act as though something Dr. Oz said on TV is relevant to her treatment, which they are happy to advise about. Everyone is an expert on chronic illnesses because they read about it online. Just like Jenny McCarthy. Phillip Moonhttps://www.blogger.com/profile/14346653995659723361noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-42472731296947319552012-11-12T18:41:05.875-08:002012-11-12T18:41:05.875-08:00I have good days. When I do, it's nice to be a...I have good days. When I do, it's nice to be able to pretend to be normal. It's nice to have a rest from being defective. Also, as much as you might need to know about my health in order to keep from making the world shittier for me, my health is still very much a personal matter.<br /><br />Long story short, don't treat talking about my condition the way you would talking about the weather. It isn't there to be a default conversation topic.Stephanie Zvanhttps://www.blogger.com/profile/15182490110208080002noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-20819651413579220692012-11-12T17:24:41.814-08:002012-11-12T17:24:41.814-08:00I think the big problem is that people don't w...I think the big problem is that people don't want to accept what is happening to you. They want to maintain their denial. marymccurninhttps://www.blogger.com/profile/01079856893166567371noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-36320801133824889562012-11-12T16:26:14.754-08:002012-11-12T16:26:14.754-08:00I love that you have taken your experiences, very ...I love that you have taken your experiences, very thoroughly put together the ethnography, and created this excellent primer for everyone to learn from. Thank you.Greg Ladenhttps://www.blogger.com/profile/04857616630819182647noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-18497612970417362012-11-12T15:54:40.272-08:002012-11-12T15:54:40.272-08:00As friend to three persons that have chronic illne...As friend to three persons that have chronic illnesses (Sickle cell, RA, and cystic fibrosis), this was good to read. <br /><br />And the whole invisibility of mental illness ( "you don't look sick"), yeah, it sucks. "Your life isn't that bad. Why are you sad? Just be happy." OMG STFU. <br /><br />To add to all that, I always have to remind other people MEDICINE is fine line between art and science. There is a lot of hit or miss diagnoses and treatments. Everyone is different. And not all doctors get it right the first time. I'd say most of the time most of them are going to get it wrong. <br /><br />Oh, and a helpful tidbit, keep a copy of all your medical records. When treatments/therapy last forever, it's hard to remember when you tried X drug or had X surgery or saw X specialist. <br /><br />Thank you for listing the first misconception, I thought the same thing when you were having surgery. I was like "damn, that was fast."Anonymoushttps://www.blogger.com/profile/16293701598112893178noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-56861415660309016042012-11-12T15:30:08.904-08:002012-11-12T15:30:08.904-08:00Best thing I've read in a while.
As someone w...Best thing I've read in a while.<br /><br />As someone who is technically undiagnosed with fibromyalgia (and possibly rheumatoid arthritis) I hate the doctor ones the most. When I did have a good job, I couldn't afford insurance because I was taking care of my mom. Now that I'm too disabled to work anymore, I'm having a hell of a time getting on disability (or housing or anything else that can help me) because I couldn't afford to see a doctor before. I'd *love* to see a doctor. As soon as someone can point me toward a free clinic that I don't need to anger my disability for (getting up at 3 AM? Makes me hurt more for the entire day) then I'll be the first in line.<br /><br />Disability, mental or physical and of any severity, really compounds class issues. I imagine it also compounds issues with race and gender as well. On top of all of that, just as you've pointed out with the article, our communities frequently belittle us without realizing they're doing it and it can be exhausting to our already limited supply of energy and focus.<br /><br />Thanks for being upfront about everything, it's inspiring to someone who doesn't have a platform like you to make the world a better place.The Magushttps://www.blogger.com/profile/02259339990170170579noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-55498238204840449192012-11-12T15:12:18.846-08:002012-11-12T15:12:18.846-08:00I can't believe I forgot "but you don'...I can't believe I forgot "but you don't look sick!!" That's a really good (read as: awful) one. <br /><br />Also, poop puns are totally okay. They help me get through rough days. :)<br /><br />And yeah, prednisone. Hate living with it, can't live without it.Sarah "Mowgli" Mogliahttps://www.blogger.com/profile/04329767129644882505noreply@blogger.comtag:blogger.com,1999:blog-7984528614609775935.post-25540140349021400412012-11-12T15:06:27.983-08:002012-11-12T15:06:27.983-08:00I will be the first person to NOT pretend I know w...I will be the first person to NOT pretend I know what it's like to feel like there is lava coming out of my butthole. <br /><br />But I do understand what it's like to have people say really unhelpful things about a chronic illness. In May, I was diagnosed with multiple sclerosis, and there are several things I am sick of people saying. The "why didn't you go to a doctor sooner" thing pisses me off the most, because I am uninsured and I do not go to the ER unless something really terrible happens. The other one that gets to me is "you don't look sick." So because I am not in a wheelchair with no control of my bodily functions, I don't really have MS? What horseshit.<br /><br />While I do not understand Crohn's, I do understand your frustration. And I promise not to say anything shitty about it. (Pardon the pun, I had to.)<br /><br />(Oh, and prednisone totally does suck. I have to take it during MS relapses. Worst drug ever.)Anonymousnoreply@blogger.com