I'm Mik. Model, mother, moron. Future meta-magician. Former logic clinician.
My better half and I own Brainfood Bookstore in Longmont, Colorado. It is the only exclusively indie- and local-lit bookstore in the nation. We meet a lot of crazy folks.
Testimonial from a former roommate:
"Living with you was like living with a quiet little opinionated deer person who floated around like a ghost and said smart/nutso things and ate seaweed. "
I love Colorado. I love mountains. I love hiking. I read and write. I raise my children to the best of my ability. I have lupus and have defeated early-stage cancer twice, so I pretty much fully support the use of medical marijuana.
Catching Elephant is a theme by Andy Taylor
Wheelchair Chronicles #24
What do you see wrong in the above picture?
Is she breaking the law? She appears to be the correct age, judging from the back, but one cannot say for a certainty. But since she is apparently in a place where she can purchase alcohol, we have to assume she is of the appropriate age.
What else is wrong with this picture? Is it because this woman is standing up from an original seated position in a wheelchair?
Hmmmm….because only people who cannot under any circumstance walk use a wheelchair..
We all know that this isn’t true. This woman may use a chair because of a heart/lung condition. Or perhaps she has a balance issue. Maybe she can’t go long distances without the use of a wheelchair?
I know this has been posted on the internet because someone thought that this was funny. And upon first glance, one would assume that she is faking a condition. But how can you know without knowing this person’s situation.
I have the use of my legs but frequently need a wheelchair, especially if I’m going to be out for longer than twenty minutes, especially at grocery stores, shopping malls, etc. I will simply fall the floor without any support at all. I do use a walker for restaurants, movie theaters, etc. where I won’t be on my feet for too long, and mostly a cane around the house and quick trips where I won’t be standing at all with the exception of getting from my car and back.
On a few occasions while putting my wheelchair in the trunk, I have stopped people and traffic dead in their tracks as they watch me miraculously get out of my chair and limp to the door. Their mouths drop open as suddenly I can walk. It doesn’t get through to their heads that people can use wheelchairs for different things. It is not always that the person doesn’t have the use of their legs.
This picture exasperates me every time I see it online, especially here on tumblr. It makes me wonder what people truly think of me, when I have to get out of my chair.
Thank you for this post. I wish everyone understood this; but, judging from the text on the image above, we can clearly say that everyone does not. When I was at my worst of my flare last winter, and couldn’t walk at all without support, I should have been in a wheelchair on my worst days, when I fell down a lot. But I didn’t use one— partly due to cost, partly because I knew what people’s reactions would be on the days I could walk and was ‘miraculously’ no longer in a wheel chair.
It’s not fair to have to base your medical decisions on what people’s reactions will be.
The original Spoon Theory story is by Christine Miserandino of butyoudontlooksick.com. My own spoon story is the true story of what happened when I attempted to explain what it’s like to be chronically ill using the same analogy that Christine did. Needless to say, it didn’t go as well for me.
That ‘fat, sick, and nearly dead’ documentary needs to die
I’m sick of people telling me I’d totes cure my INCURABLE DISEASE by the mAGiC of ~*JuiCe FaSTiNg*~
nope
nope
nope
This. -_-
TheLameDame: Cute chick with a cane/crutch/chair
I want to make this a thing. I really love the variety of blogs here in tumblr land, and the huge amount of fatshion blogs out there tells me that people want to see depictions of nonstandard body types in our media consumption. Since I can’t change the mass media, I will work within the media I…
signal boost :]
Today is Wear Purple for Lupus day… what are you going to wear today?
I thrust a bouquet of pink disposable spoons, leftover from my daughter’s birthday party, into his hands. We didn’t have enough real silverware spoons, so I’d gathered up ten or so plastic spoons to give to him. I thrust them at him so he has no choice to take them. “Here, you have lupus,” I say.
“What the hell is this?” he mutters, refusing to look at the spoons.
“You have lupus,” I repeat. “What do you do in a day?”
“What?”
“What do you do in a day? When you wake up in the morning, what do you do?”
“I… get up, get around—”
“No. You get up. Did you sleep well last night?”
“Not really…”
“Did you wake up during the night?”
“Yeah.”
“How many times?”
“I don’t know, twice?”
“Okay, so you get up. That costs a spoon.”
“I know you’re in pain, I already fucking know—”
“No, you don’t. You don’t know. Getting up when you haven’t slept well costs a spoon.”
He rolls his eyes and hands me a spoon. I’m annoying him.
“What do you do now?”
“I make breakfast?”
“Standing up? The whole time? Standing up while you wait for the eggs to cook?”
He nods without looking at me.
“That costs a spoon.”
He hands it over in silence.
“Do you smile at breakfast?”
“What?”
“Do you smile. At breakfast. Do you keep from crying? Do you smile?” Tears are running down my face at this point. I wipe my nose on my sleeve and he hands me another spoon.
“You take a shower? You wash your hair? With your elbows bent and your arms above your head? Another spoon.”
He won’t speak to me or answer my questions, just glares into space, rolling his eyes and handing over spoons when I tell him to.
“You get your son dressed? That’s a spoon. You remember how to get to his daycare? Do you? You remember how to drive there? That’s a spoon.”
I’m crying so hard I forget. I forget to ask him if he remembers what I told him he needed to pick up at the grocery store, if he remembers an important call he needs to make. I forget to ask if his pants had a zipper or his shirt had buttons or if he had to tie his shoes. I forget to take spoons away for smoking. I forget to tell him it costs a spoon to even work the lighter.
“What do you do at work?” I finally choke out.
“I stand up. All day.” He’s still not looking at me, still glaring, but I understand that this is his attempt to be sympathetic.
“That costs about six spoons.” He has three left. “But I’ll only take one. What do you do for dinner? You don’t have enough spoons to cook and then do the dishes. You don’t even have enough spoons to go pick something up. You have to pop something in the microwave. That sucks.” I’m bawling and my nose is running and he’s staring at me. He doesn’t hand over a spoon for dinner, he’s holding onto his last two spoons with white knuckles as he stares at me, silent, glaring, and I keep going.
“You don’t have enough spoons left to do laundry. You don’t have enough spoons to sit up and read a book tonight. You don’t even have enough spoons to sit up long enough to watch a movie. You definitely don’t have enough spoons to go out and do anything. You don’t have enough spoons to have a life. You barely have enough spoons to give your son a bath and read him a story before bed.”
“What do you want me to do?” He throws the last two pink spoons at me. He storms off before I can think of an answer. I’m left cradling the metal spoon I was hiding in my hoodie to give to him when he ran out and needed another spoon just to keep going. I’m left wishing someone would hold onto an extra spoon to give me.
SEEMS LEGIT.
Yes, I have heard of juicing and desperately want to try it, but because I live in Kansas, it is almost impossible to get fresh marijuana. When I move to Colorado this summer and I am legally able to grow medical marijuana, I am going to start juicing. For those of you who don’t know: While smoking or ingesting dried marijuana helps reduce pain and even inflammation, it doesn’t treat the root of the problem. Ingesting ‘juiced’ fresh marijuana, in many cases, actually lowers ANA levels. ANAs are the antibodies that are literally killing my connective tissue (causing the pain and inflammation). Furthermore, the juice has little or no THC, meaning that it won’t get you high— aka, I can use it while still being a responsible parent.
I’ve had several people tell me I ought to start juicing. My boyfriend says it every time I smoke (because smoking is really bad on my lungs, which is why I usually eat edibles). And as soon as I move to Colorado, I will. I’m glad you mentioned it, and thank you very much for the title of the documentary— I wasn’t aware of that! I’m going to have to steal someone’s Netflix and watch it sometime :)
(In response to my doctor being an asshat and always asking if my pain is any worse than normal. WELL DUH)
In response to this morning’s events.
(Note: This is from a private discussion we were having about Hemp Seed Oil and its benefits both nutritionally and as a moisturizer. Just wanted to publish this now because hnhnta makes an excellent point I’d never though of before)
I know, right! I think the fatty acid thing is what I was trying to say haha. I mean I use it mostly medically by smoking, not for nutrition by ingesting, but only because I can’t get any fresh— despite the fact that preliminary studies show that marijuana ‘juice’ might reduce ANA levels in patients with lupus and other autoimmune disorders (which no other treatment, other than chemo and other toxins, is shown to do). It SUCKS that it’s illegal just because pharmaceutical companies want me to have to pay for (and be dependent on) treatments that are ineffective and harmful to my body.
But what you said about fixing world hunger is a point I’d never heard before, yet it seems plausible. Not that it would straight-up fix world hunger, but that hemp seed oil could be used as a nutritional supplement in places where most of the populace relies on sparse grain with little nutritional value. As we both noted, Hemp Seed Oil is the only naturally-occurring oil with not only all the essential fatty acids, but the same ratio needed by the human body. Let’s break this down: Any other oil or fat contains either not all the essential fatty acids, or the wrong ratios, meaning you have to eat a combination of fats and oils to get everything your body needs. In areas with high rates of hunger, people obviously don’t have the resources to go around eating some of this kind of fat and some of that kind of fat until they have enough to support brain and eye growth, fetal development, immune function, etc. What hnknta seems to be suggesting, and what I absolutely agree with, is that in such areas, an effective solution would be to plant a bunch of hemp (as she said, grows easily, and is more hardy than most grains), and let the people get all their essential fatty acids from hemp. Maybe not “Bingo, problem solved!” but definitely a step in the right direction.
And sorry I just got around to answering this, I passed out last night in the middle of our conversation :/
Medical Marijuana May Help Fibromyalgia Pain - New Solutions for Fibromyalgia -
Lynda, a 48-year-old mother of three who lives in upstate New York, was diagnosed with fibromyalgia in 2000. While there are prescription medications for fibromyalgia, she’s found one unconventional drug—marijuana—that really does the trick.
Wait. Wait. Hold everything.
You mean that marijuana, long used for pain relief, might possibly be effective treatment for a disorder characterized by chronic pain?
BREAKING NEWS, GUYS.
Why, I wonder, isn’t lupus on the list? It certainly qualifies. I guess just because it’s still something people have only heard about from the phrase “It’s not lupus”?
At any rate, I still have chronic pain, arthritis, fibromyalgia, and nausea.
Little known fact: I haven’t always been a pothead. Fifteen months ago, I had never tried marijuana and said I never would. A friend got me to start smoking because I had an eating disorder. I can testify to marijuana’s effectiveness as a treatment for anorexia, as stated in the image above.
I thrust a bouquet of pink disposable spoons, leftover from my daughter’s birthday party, into his hands. We didn’t have enough real silverware spoons, so I’d gathered up ten or so plastic spoons to give to him. I thrust them at him so he has no choice to take them. “Here, you have lupus,” I say.
“What the hell is this?” he mutters, refusing to look at the spoons.
“You have lupus,” I repeat. “What do you do in a day?”
“What?”
“What do you do in a day? When you wake up in the morning, what do you do?”
“I… get up, get around—”
“No. You get up. Did you sleep well last night?”
“Not really…”
“Did you wake up during the night?”
“Yeah.”
“How many times?”
“I don’t know, twice?”
“Okay, so you get up. That costs a spoon.”
“I know you’re in pain, I already fucking know—”
“No, you don’t. You don’t know. Getting up when you haven’t slept well costs a spoon.”
He rolls his eyes and hands me a spoon. I’m annoying him.
“What do you do now?”
“I make breakfast?”
“Standing up? The whole time? Standing up while you wait for the eggs to cook?”
He nods without looking at me.
“That costs a spoon.”
He hands it over in silence.
“Do you smile at breakfast?”
“What?”
“Do you smile. At breakfast. Do you keep from crying? Do you smile?” Tears are running down my face at this point. I wipe my nose on my sleeve and he hands me another spoon.
“You take a shower? You wash your hair? With your elbows bent and your arms above your head? Another spoon.”
He won’t speak to me or answer my questions, just glares into space, rolling his eyes and handing over spoons when I tell him to.
“You get your son dressed? That’s a spoon. You remember how to get to his daycare? Do you? You remember how to drive there? That’s a spoon.”
I’m crying so hard I forget. I forget to ask him if he remembers what I told him he needed to pick up at the grocery store, if he remembers an important call he needs to make. I forget to ask if his pants had a zipper or his shirt had buttons or if he had to tie his shoes. I forget to take spoons away for smoking. I forget to tell him it costs a spoon to even work the lighter.
“What do you do at work?” I finally choke out.
“I stand up. All day.” He’s still not looking at me, still glaring, but I understand that this is his attempt to be sympathetic.
“That costs about six spoons.” He has three left. “But I’ll only take one. What do you do for dinner? You don’t have enough spoons to cook and then do the dishes. You don’t even have enough spoons to go pick something up. You have to pop something in the microwave. That sucks.” I’m bawling and my nose is running and he’s staring at me. He doesn’t hand over a spoon for dinner, he’s holding onto his last two spoons with white knuckles as he stares at me, silent, glaring, and I keep going.
“You don’t have enough spoons left to do laundry. You don’t have enough spoons to sit up and read a book tonight. You don’t even have enough spoons to sit up long enough to watch a movie. You definitely don’t have enough spoons to go out and do anything. You don’t have enough spoons to have a life. You barely have enough spoons to give your son a bath and read him a story before bed.”
“What do you want me to do?” He throws the last two pink spoons at me. He storms off before I can think of an answer. I’m left cradling the metal spoon I was hiding in my hoodie to give to him when he ran out and needed another spoon just to keep going. I’m left wishing someone would hold onto an extra spoon to give me.
