All my spoons are in all the right places, if you know what I'm talkin' about...
Catching Elephant is a theme by Andy Taylor
What to Do When You’re Stuck Sick at Home
No matter how hard we try or how well we treat our bodies, all of us will go through periods of time where getting up is simply not an option. And I’m sure everyone has their own methods of staying occupied when this happens, and the internet is a great tool for that…and we’re all familiar with the popular choices: Watching movies and television shows on Netflix or Hulu, posting to Facebook, Twitter, Tumblr, browsing Reddit or Pintrest. But I know that after a few hours of that, even if I literally cannot move, I start to feel lazy or bad about myself. So I thought about compiling a list of places to go on the internet that can keep us mentally stimulated and productive even when our bodies have given out on us.
The first one is a big one: Gain endless amounts of knowledge on various subjects with MIT’s free open courses.
Or with Yale free open courses!
Watch thought-inspiring videos with TED
Practice speed reading and reading comprehension
Make some money working freelance jobs in various areas of skill
Learn tricks and tools for every day life
If you’re a writer, this app helps motivate you past writers block
More free online documentaries
Please send me others that you use so I can expand on this list, and I’ll repost a finished product later on.
So, where do you go to stay productive on the internet when you’re stuck in bed?
How much rage does this inspire in me? The person who received this note on their care was driving with their sister who had a Prosthetic Leg. Okay, good, everyone agrees the author of this note is a shithead.
But it’s the “*able-bodied*” in the note that got me. This person is watching people walk a few feet out of a car and makes the assumption that looking “able-bodied” means they *are* able-bodied. And that opinion is not uncommon. We think “disabled” and picture people in wheelchairs or talking through computers, we picture adults who need to be assisted when crossing the street. Obvious things.
I’m eligible for a handicapped parking sign now, unfortunately. I still don’t know if I’ll get one. But by looking at me, especially on a “good day”, I look “able-bodied” plenty. This is so true for so many people that it’s hard to forgive this misconception anymore. It’s gone from simple ignorance into arrogant entitlement.
If I ever do get a handicapped sticker for my car, just let someone write me a note like this…please.
People with Chronic Illness have trouble coordinating care
A new study in Health Services Research shows that one of the leading reasons for Chronic Illness complications is due to the overwhelming amount of appointments with several different specialists each year.
In younger patients, even those with more than one Chronic Illness to manage, the tendency to keep track of their appointments than an older patient with only one illness.
This seems to be something close to common sense, as we get older our symptoms increase in severity, our tolerance for pain goes down, we get tired, etc. But that doesn’t mean this should be an issue.
Because we see so many different specialists, it generally means that our doctors are not affiliated with one another, or connected in any way. That leaves the responsibility up to us to make sure that each doctor knows all details, and that we keep up with each of them regularly in addition to when necessary. This isn’t easy for many of us, especially with the addition of our symptoms.
We’re seeing workshops popping up in various places in America, usually inspired by or run by Eastern practitioners, designed to help sufferers of Chronic Illness become more organized and to stay on top of their medical needs. Most of the time these workshops are free.
For starters though, here are some tips:
Give your doctors, ALL your doctors, the express consent and instruction to share all your documents (tests, reports, etc) with each other. They may act annoyed with you, but don’t have any of that. Their offices will fax your information if you tell them. This way, if you forget that your cardiologist noticed heart palpitations the next time you see your nutritionist (or whatever the case may be), you are covered.
Try to book appointments close together. I know this is not always possible, but keeping your conversations in your recent memory is always helpful.
Keep a pain/symptom diary. There are iphone/android/windows phone apps, or you could just jot things down on paper. But keep it, and bring it with you to each appointment to keep your symptoms straight. Mark the symptoms with a severity level, probably from 1-10. I know I have a tendency to play down my symptoms after they’ve gone away, so this will keep me from sabotaging myself in that way.
Please feel free to add anything…Does anyone have any other suggestions for managing multiple doctors?
![chronicillnesscat:
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “You should take better care of yourself. But, the only thing I do is take care of myself!”]A friend recently posted on one of my Facebook pictures where my pupils were dialated, due to serotonin syndrome. She knows I have Fibromyalgia, CFS, PTSD, and I’m withdrawing from Tramadol already, yet she still said “Please take care of yourself better.” I wanted to scream! Take better care of myself? I changed my entire diet, take my blood pressure & pulse on a daily basis, exercise when I can, take medications, take supplements & herbs, go to doctors, rest, etc. My whole life is centered around taking care of myself! What more does she expect of me?](http://25.media.tumblr.com/tumblr_m0t8jhPeOw1qi36g3o1_400.jpg)
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “You should take better care of yourself. But, the only thing I do is take care of myself!”]
A friend recently posted on one of my Facebook pictures where my pupils were dialated, due to serotonin syndrome. She knows I have Fibromyalgia, CFS, PTSD, and I’m withdrawing from Tramadol already, yet she still said “Please take care of yourself better.” I wanted to scream! Take better care of myself? I changed my entire diet, take my blood pressure & pulse on a daily basis, exercise when I can, take medications, take supplements & herbs, go to doctors, rest, etc. My whole life is centered around taking care of myself! What more does she expect of me?
Massage reduces inflammation in muscles
Most of you know by now that I’m a major supporter of things that many people like to call “alternative medicine”, and that I’m frequently irritated by the many people who try to group things that are blatantly dangerous lies (homeopathy) and legitimately good health decisions.
Well, it’s always a score for the good team when the science behind these treatments is made plain and public. A while back I posted about meditation, and tonight I’m happy to be posting similarly about massage!
More and more insurance companies are adding things like massage and acupuncture to their plans and it’s a damn good thing!
For many of us, our chronic pain is caused largely by inflammation. Of course, this wouldn’t be of help for joint inflammation, but when muscle inflammation is an issue there is no question-massage can help to alleviate the cause of the problem.
![chronicillnesscat:
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “In too much pain to go to school/work - in too much pain to stay home in bed”]
OH if this isn’t my brain many days.](http://25.media.tumblr.com/tumblr_m0yxmvMHIX1qi36g3o1_400.jpg)
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “In too much pain to go to school/work - in too much pain to stay home in bed”]
OH if this isn’t my brain many days.
Legislation Approved Appropriating $1 Million to Lupus Research
In any science, especially medically science, funding is everything. If you’re not a hot topic enough to get attention, then you aren’t getting funded. And without the money, there’s no research to be had. Over the years there have been “trendy” diseases to donate to. Those diseases, while important, overshadow the rest.
Take Breast Cancer, for instance. Sure, it’s an awful thing and I hate that there’s anyone who has to go through it. But it’s the disease equivalent of a superstar. ”pink” is everywhere, girls are constantly making overt sexual gestures on their facebook pages for “awareness”, and that pink ribbon is on every minivan in North America. So, they’re getting the funding they need for research and support. And I’m glad.
But then there’s the little guys. Lupus, Crohn’s, RA and other less-“popular” diseases, we get a lot less hype, and a lot less funding as a result. But we need it just as much.
“On behalf of the 1.5 million people suffering with lupus in America, we are deeply grateful for the continued support of Congress for providing healthcare professionals with the necessary tools to be able to recognize, diagnose and treat the disease promptly and effectively,” said LRI President and CEO Margaret Dowd.
Lupus research hasn’t had the best of luck as far as funding. Suffice to say, this is some really good news. It’s a good way to end 2011 and move into 2012.
Lupus Infographic.
a large, fruit-eating bat.: Hmm I wonder. How many people in the chronic illness circle on Tumblr currently attend college?
And how do you feel about it?
And if you’ve dropped out because of an illness, what are you doing now to make a living?
My answer cut off halfway through and now I can’t change it lol.
So anyway I was saying its my last semester but…
Well, for me, I made it through most of college without a hitch, even though my Lupus symptoms were periodically pretty intense. Honestly, I did pretty well with it and had kind of a blast in the process. But, in late junior year, when I had to add PTSD to the mix of things, *that’s* when it got to be too much for me. I struggled from then until midway through senior year and then I had to leave. Since then I’ve been working multiple jobs, whatever I can get, and taking classes one at a time as I can handle it. But I’m in my last class right now, so it looks like I’ve made it =).
