angelaharms

What's a bent? (If you don't mind my asking?)

Tom Stormcrowe

A bent is shorthand for a recumbent bike or trike.

lil brown bat

Boy howdy, I heard that! It's a shame, because IMO this type tends to (pre)dominate in forums devoted to this or that ailment -- you know the ones who create a big elaborate .sig that lists everything that's wrong with them and all the meds they take? And then other people come along and see that and think, "Oh, so that's how it's done here, so this is how you live with Condition X."

This is a mindset that I just can't be around, at all. I make no claim that my approach to living with a chronic condition is the only way, or the best way. I am pretty rock-bottom certain, though, that it's the best way for me -- and I find that it's more or less incompatible with the "become the ailment" approach. I've been called "lucky" because I am active, while so many people with RA are crippled. I've been told, "Just wait and see, it won't last." I just can't be around that. I just can't borrow trouble. If I become disabled despite what I can do to stave it off, then I'll just have to live with that, but in the meantime I refuse to awfulize.

Neil_B

Wonderful post, LBB. It reminds me of my sad experience at the boards of the National Scoliosis Foundation. I got flamed for not listing details of my curvature in my sig line. Guess where I don't post anymore...

I'm sorry to read you have RA. I never would have guessed. But then again, you have RA, it doesn't have you.

Neil_B

Yes. I find such folks need a good sense of humor about the world and themselves. I'm not afraid to describe myself as looking like a croissant, or suggesting the National Scoliosis Foundation hold a Twister marathon as a fundraiser. Although I have to admit I was a little concerned about calling a fundraising ride for epilepsy "Shake, Rattle and Roll."

lil brown bat

Wow. Thanks for that. Those are words I'm going to hang onto and haul out whenever the going gets tough.

(edit: and I'm glad to hear that I'm not the only one creeped out by that .sig thing)

lil brown bat

But, of course, you can't develop that sense of humor if you can't distance yourself from your condition...because if you can't distance yourself from your condition, anything that pokes fun at your condition is also poking fun at you as a person. You also have the people who have been reading too many Anne McCaffrey novels and who think it's somehow fun or cool to be a victim, so they practically fling themselves beneath the metaphorical wheels of any adversity that comes into their lives. And then, of course, there are the legions who are effectively in thrall to the pharmaceutical industry. I'm not anti-pharm, but I'm highly mistrustful of the current thinking that the correct response to any ailment or discomfort is a prescription drug. Some things you're really better off finding an alternative, or just simply living with.

Neil_B

Any time, LBB.

Almost as creepy is calling yourself your illness. Although I hate political correctness, and the construction can be awkward, I try to say "I am a person with ____" rather than "I am a _____tic." I am a person, not a '-tic.' NeilF is a person with epilepsy, not an epileptic. You are a person with RA, not an 'arthritic." I may make an exception for EVBlazer, however, since "Marfantic" sounds like a neat word.

Neil_B

I can't be anti-pharm, since Ibuprofen is my friend. And some days, a very good friend. Also, in many cases , such as epilepsy, drug treatment is pretty much a given.

Personally, I needed to develop that distance because the world is trying to push me the other direction. I have friends who feel the need to tiptoe around discussions of my structural problems because they are afraid of offending me. I have to reassure them I know my legs are crooked and I'm a little bent to the side, and as long as they don't say something stupid, they should speak freely. I sometimes like to shock these folks by quoting my former lifting and riding buddy Dennis, who once said of me "If you were a horse you would have been shot long ago."

evblazer

Well when it came up recently with the potential Verizon Strike I think I said "I have Marfan Syndrome so Verizon will not let me doing any physical activity whether I'm able to or not" to my strike coordinator because they wanted me to climb poles and carry lots of heavy stuff. Marfantic hmm. sounds contagious
I try to keep quiet about it considering if the wrong person found out they'd probably take away my bike parking and gym use (shower use only) privilages. Having high school gym class stopped and being escorted out once the nurse looked it up in her medical dictionary was enough ?? for one lifetime.

Hm I need a good .sig line.. Maybe "convulsing and vomiting at the sight of rib spreaders since 1989" hmm. I've shared to much but now you know why they won't let me on the support group chat

Neil_B

I've tried to keep quiet about scoliosis, but it's pretty hard to hide it. I've had strangers come up to ask me about it. We live in a queer world, don't we?

I get folks, even here on Bike Forums, who think I should be in some sort of glass case. Sorry you have to put up with it. I have lifting restrictions at work, and there are some activities I'll never do - change a car tire, chop and collect firewood, etc. - but other than that I do whatever everyone else does. Here on Bike Forums, that means ride a bike.

angelaharms

This is interesting, evblazer and Historian. The illnesses that cause my disability are invisible. People just think I'm fat and lazy... "If you'd just get a little exercise..."

I think people tend to assume that what they *see* is actually reality. They see a fat, lazy chick who complains of pain and fatigue, or they see a "crippled" person who shouldn't be lifting heavy things or riding a bike. Maybe we all need biking t-shirts that says "You have no clue."

Angela

evblazer

Invisible.. That always is fun
After my first 200k
Very nice rider replying to something I said about breathing: "You should start drinking caffiene after ........ it helps open up your airways......"
Me: "I'm not really supposed to have caffiene"
VNR: "oh too bad"
<pause>
VNR: "Are you <religion I can't remember>?"
<Skip embarrassing part about me not knowing they were talking about religion and not some club>
Sooooooo I could make something or tell partial truth up but that almost always leads to more questions/options.
Me: "No I have marfan syndrome and can't take any stimulants"
VNR: "Oh they thought I might have that"
<end of that part of the conversation>
Note: Those folks were great and still are. I ride with them less now because they got their riding legs back with some miles and I'm still slow.

I get the lazy stuff at work especially when I have to remove myself from things like carrying boxes or climbing poles. "you ride how many miles and you can't carry a box 50ft?" noper. They know I can lift that box, I know I can lift that box but I shant lift that box.

Wogster

The medical fields current thinking with prescription drugs is two fold., first is, doctors who see 30 patients an hour, make a truckload more money then doctors who see 6 patients an hour, so they listen to the briefest description of symptoms, and then prescribe a drug. What becomes a real problem, is this:

You go to doctor with ailment, gives you drug A
You go back to doctor with side effect, gives you drug B
You go back to doctor with another side effect, gives you drug C
..... < repeat until > ....
You go back to doctor with yet another side effect gives you drug Z

So now your taking 26 different drugs, because of one ailment.....

I know this lady, who was a practical nurse (years ago, I think she's well past 80 now), she went to see a new patient, the patient was showing signs of severe dementia, the patient had been taking some 40 different drugs, prescribed by 25 different doctors. This nurse thought the drug load was insanity, she contact the patients GP, they stopped all medications, and started over. You know within a couple of weeks, that patient was showing absolutely no signs of dementia, and the condition that had started the whole mess, was not evident either.

The second thing with drugs, is that patients want instant, no work results, which is why drugs and surgery are the only options they will consider.

Neil_B

In my case, they see reality. I walk with a limp, I'm stooped, I have bad posture, my right leg has a heck of a knock in it. These problems are part of who I am. They don't stop me from doing what I want to do. That's what some folks have trouble with. lil brown bat, Eblazer, NeilFein... all these guys go out and do things that 'the world' tells them not to do - commuting, brevets, centuries .. and they've all probably had the same naysayers naysaying to them.

Neil_B

I've got a better word for you, EVBlazer - "Marfantastic!" A guy who can complete a 200K brevet deserves a special word.

angelaharms

Historian, maybe I wasn't clear. I didn't mean that what they see isn't "reality." I meant that it's not the complete reality of who you are. People make assumptions about other people all the time. There's a lot more to you (and your particular issues) than anybody who isn't you can know. That's all I meant.

Angela