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.
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.
Going to the emergency room yesterday was basically the worst experience of my life. Essentially, I hit my hip while wrestling in the sand on the beach while camping, and what looks like a vein immediately bulged out of the thin skin on my hip where I have a pregnancy stretch mark. My boyfriend immediately was like, “We have to leave and go to a hospital,” but I didn’t want to ruin his night so I toughed it out for two hours, despite the fact that I was in excruciating pain and my friends kept making comments about how accident-prone I am. I kept a cold can of beer on it but it kept getting worse so I finally asked my boyfriend to take me home so I could put real ice on it. I broke down crying and he insisted on taking me to the hospital, despite the fact that I told him it would be so embarrassing and it wasn’t that bad.
Well, we get to the hospital and we’re answering the usual questions for the checky-in lady. She asks how long it’s been bad enough that I can’t walk without assistance (John was practically carrying me), and I told her that I have arthritis. She says, and I quote, “You’re too young for arthritis!” I reply, “I have lupus.” Nothing.
She puts me in a bed to wait in a screened off section of the waiting room, because I ‘look so miserable.’ My boyfriend keeps asking me what he needs to say to make them hurry. He’s used to ER visits being for difficulty breathing, and as soon as I say I have lupus, they wheel me back. But a bump on my side isn’t exactly an ‘emergency.’ I keep losing consciousness because of the pain, unintentionally scaring the shit out of John.
Finally they see me. The doctor looks at it, then looks at the nurse, then back at the bump. He pokes it, hard, completely ignoring my whimpering. Finally he informs me that it’s cellulitis— a skin infection. My boyfriend and I both say No. It popped up suddenly upon impact. Not an infection. Well, he says, then it’s probably just an abrasion. Mind, there’s not a single thing wrong with the outer surface of my skin. No cuts, no scrapes. It’s clearly something from the inside out. I’ve had one once before when I hit my hip on a doorframe, but it didn’t poke out so bad and only hurt when touched. The doctor says he can order a CT and a sonogram but he’s sure they won’t show anything and will just add to my bill. He’s not worried about it being a clot because it’s not hard and anyway clots in the trunk aren’t anything to worry about. He said they’d be more worried if it was on my leg. He says he doesn’t even know what to diagnose it is because it isn’t anything. My papers come, it says my diagnosis is ‘abrasion.’ It says, in not so many words, I went to the ER for a boo-boo.
They ask if I’ve taken anything for it. No, I don’t take painkillers. I have bad kidneys. Do I smoke. No. Do I drink. No. Do I do drugs. No. “Not even marijuana?” Well, marijuana. For pain, my boyfriend adds. “It’s still illegal,” the nurse says. “In this state anyway. I have a son in California who gets it prescribed—” If I lived in California, they’d prescribe it for lupus. “Do you have a prescription for marijuana?” No. “So you just take it for the hell of it then.” My boyfriend is ready to punch her. “Have you taken anything yet for the pain?” I’m ready to punch her.
The doctor asks if I want a Lortab. I say I have bad kidneys. He says Lortab is Tylenol-based so it’s processed by the liver. I accept the Lortab.
He brings it to me and my boyfriend says this is bullshit. You can’t just give her a Lortab and send her home. You don’t even know what’s wrong. The doctor says well what do you suggest I do? My boyfriend says I don’t know you’re the doctor, you should figure it out. The doctor says this is the emergency room and we treat emergencies and she can go to her doctor on Monday but for now all we can do is help the pain. I’m crying at this point. The immediate care is closed, I say. It’s 2:30 in the morning, or I would have gone to immediate care. I know it’s not an emergency. It just hurts. I’m crying. The doctor tells me I don’t need to get so upset that I cry. I’m not upset, I sob. I’m in pain.
This is why I didn’t want to go to the emergency room. I’m tired of being treated like I’m stupid.
Eventually the doctor avoids getting the shit beat out of him by my boyfriend and we go home, but I’m wondering. Has anyone else ever had anything like this? Not an encounter with a moron doctor, but something poking out of thin skin (like a stretch mark). It pulses and bulges so that’s why we thought it’s a vein. And it’s incredibly painful. Any ideas?
I’m currently searching for clinical trials to participate in. Of course the first clinical trial I found in my state was for a medication I have already been on, which caused me to have muscle atrophy, hearing loss, and dementia.
This really sucks. If anyone knows of any clinical trials for lupus that don’t involve chemicals or toxins that might kill me, please let me know.