Where did you go when it crumbled?

[brightrosefox]

At this point in my life, I've started shrugging it off and doing everything I can to be everything I can, if that makes sense. I can't deny any of this. I can't wish it away with whatever that magical positive thinking is supposed to do... something about asking the universe to help out? Something about deciding to change overnight and then magically changing just with determination and willpower? I don't know. I think someone wrote a book about it.
However, I'm not going to just fall down and let it take over. That's pointless. I don't plan on sitting back and hurting. I'm going to plan on standing up, running around, and hurting because hurting will happen anyway. I have life to live and things to do. In fact, some of the medicine I've been taking has been helping me remember stuff I keep forgetting, sometimes. Good times, if I can remember them. I need to keep writing everything down. I'm not even worried, upset, or frightened. I was born this way. I can't make it go away, but I can make it better one step at a time. Especially with qi gong. Screw yoga, qi gong is awesome for me.

Quoting:
Post-impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.

Links!
http://www.nhs.uk/Conditions/Cerebral-palsy/Pages/Complications.aspx
http://www.ninds.nih.gov/disorders/cerebral_palsy/detail_cerebral_palsy.htm
http://www.cpirf.org/stories/465
http://www.disabled-world.com/artman/publish/health-challenges.shtml
http://www.accesspress.org/2009/01/growing-older-with-cerebral-palsy/
http://www.caregiverslibrary.org/caregivers-resources/grp-diseases/hsgrp-cerebral-palsy/cerebral-palsy-and-aging-article.aspx
http://www.cerebralpalsytherapy.net/cerebral-palsy-and-fatigue.html

I already know a lot of this stuff... but so many people don't. And that's where the misinformation happens. The denial, the scolding, the disbelief, the insistence that people with cerebral palsy can concentrate all the pain away, the accusations that people with cerebral palsy deliberate seek to be crippled and debilitated. No matter how well a person thinks they know you, they don't have your condition. And that's where it gets tricky. Because they believe that you can overcome the whole thing. And that is where education and information come in.

Comments

[chorus-of-chaos.livejournal.com]

I've had people make snide comments to me and I point out to them that many illnesses are not a case where you just BAM are in a wheelchair. MS, MD, lupus (which I've recently been diagnosed with after 15 years of being told it was fibromyalgia) parkinsons, fredriechs ataxia, cerebral palsy....many of these illnesses start as seemingly minor issues and slowly over time steal away your ability to do the things you love, and eventually even the things you need to do to care for yourself. They are slow and insidious, but that does not make them any less deadly or real and that the person who just made the snide comment may have a ticking time bomb in their body just waiting to slowly start eating away at them.

I know when I was a teenager I often looked at disabled people and wondered how they managed and what their life was like. (unlike so many people these days, I didn't mock or sneer at them, I'm not in their body, I had not been sick up to that point,who and how am I to judge what they are dealing with?) I tell that person that rather than sneering at someone they see who has problems, they should stop and pause and give thanks to whatever deity they believe in that at that moment they ARE healthy and capable and can live an active life without limits, and they should pray that they have the good fortune to continue doing so. Whether or not I exercised (I did, I marathon bicycled) or what I ate or anything else I did in my life had no bearing on what it wrong with me. It's all genetic and there is not and never was a thing I could to stop this situation. 3, 5, 10 years from now they could find themselves in exactly the same kind of problem. Don't tempt fate by mocking those who have troubles, you may get troubles of your own. Many times, It makes those people stop and think.

[oneonthefence.livejournal.com]

I have totally stopped giving a shit. I've had most of these illnesses for as long as I can remember, and that's just how it is. People can deal or not. And now, with the cancer? If people don't like that, either, well, they don't have to deal with it. I do. I don't believe in the power of positive thinking to survive. I believe in good docs, good meds, good surgeries, and good friends. Everything else is just - everything else. And when you get to a point where a doctor says, "We've tried to keep you alive four times now, we can't believe you're still here, and now you have cancer? This shouldn't have all happened in just 32 years," I think you honestly can't do anything but shrug and go get a cup of coffee. What can you really change? I'm pretty sure I can't go back in time and prevent any of this, cancer or no cancer.

tl;dr: I don't care. I'm going to hurt every second of every day (thanks, body, for refusing the absorption of painkillers), and I don't care, because it's my life, and if that means spending a week on the couch or a week running around Target shopping, good for me.

I know you get where I'm coming from.

[brightlotusmoon.livejournal.com]

You are one of the very few people on the planet who knows so well, and I know, and we know. :)

I am still struggling with trying to brush off ranting tirades from people who have become convinced that I want to be in pain, that I want to get worse, that constantly talking and blogging about my conditions will magically make them worse. I'm getting there. First comes the amusement. Then comes the boredom. Then comes the lack of caring. I will know it when I get there.

[oneonthefence.livejournal.com]

I talk when necessary about my conditions, physical or mental. Otherwise, I have learned to leave well enough alone. It's the Internet, and someone will find something to bitch about. That's why I don't track my pain here. There's no point. I have a private document in which I do that. I don't require sympathy from others, unless the case is extreme (like hospitalization, or, currently, cancer. I think both warrant some public discussion), and I certainly don't require comments from people who don't get it and don't care to try to get it. My voice is my own, and I'll speak about what I want to speak about, but honestly? I realize what's happening to my body. I don't want people to know when I probably will die, or probably will stop being able to talk. Numbers change. Odds are defied. When those things happen, I'll let people know. Until then? If someone says, "My brain makes me act like I'm 15 but I really feel 90," good for them, but I'm not going to compare by saying, "Well, neurologists tell me I'll be dead in 10 years." Because really, what if I'm not? What have I shown? That I can play the one-up comparison game? No one on earth has any idea when we're going to die, or when we'll stop functioning. We only know when it happens.

Sharing information is one thing, and I believe it's important. "Pain bragging" is useless and vain. Your pain isn't better or worse than mine. It's different. I don't know what it's like to have CP. You don't know what it's like to have cancer. So why do people compare? Why do we innately think, "She cannot hurt more than I do?" We all hurt, just on different, personal levels. And so, unless necessary, I keep that hurt to myself, to Toby, and to my doctors. FB is not a place to talk about every DID episode I have or every seizure I experience or every cancer-related bump-in-the-road I face.

I just blocked someone tonight because this person told me that I could "cure my cancer" by smoking pot. And that's simply not true. I'm not against MM, but I AM against the notion that smoking pot = a cure for cancer. There's no evidence to support that, and if pot DID cure cancer, right now, Big Pharma would be all over it. But when I said no, if I could choose marijuana over radiation, and she told me that yes, I should! I'll be better if I do! I won't waste as much money! - well, I'd had it. Only I (and my doctors, who help me) know how to live. I'm past the point of wanting unwarranted and unsolicited advice. I'm 32. I have been there and done that and unless something Very Brand New (tm) pops up on the market, I've heard about it and don't need to be told how to manage my care.

So I'm now at a point where I roll my eyes at pain-braggers. I sigh at people who tell me they have a disease when they haven't even been to a doctor yet (thank you, WebMD). And I ignore people who don't want to believe what I tell them. That's not on me - it's on them. I know the state and severity of my conditions. I don't need to share them with the world unless, as I've said, something changes or a new issue arises. People simply do not enter the scope of my illnesses and my treatments unless they say, "This is a bad situation for you, I'm sorry to hear it, I'm here." That is all I need. Everything else is bragging or blather. So I've moved on to a point of simply not caring, and I hope others follow.

Wow, I'm wordy. I should be applying myself to NaNo, but - this just cropped up an hour ago, and I'm clearly still pissed. Sadly, there will always be people who have "the cure." Sadly, 99.9999% of those people will be wrong. And therefore, I don't care. So we beat on.

[brightlotusmoon.livejournal.com]

Yeah, that cannabis-cancer issue is very annoying. Despite the fact that some scientists have tried to document the effects of CBDs on SOME forms of SOME cancer, the main reason the FDA is quashing it is because they would have to admit that cannabis is actually useful and doesn't need to be illegal, which would require waaay to much bureaucracy and red tape and... nope. Not going to happen on a federal level. They're already trying to patent a synthetic cannabis medicine themselves, in fact, but that'll take years to push through, and won't work for everyone. So while I have all this information on why the federal government isn't on the cannabis thing yet, I know damn well that none of that information will prove useful to anybody except activists and lobbyists, and maybe some people in Colorado and Washington. :p

Also, cannabis CANNOT CURE most forms of cancer no matter what these scientists prove. Treat? Maybe? Cure? Nope. Besides, nobody knows if the cancers would just crop right back up.
I've had that argument with friends. I've explained that while all these studies might "prove" some "effective treatments" for specific things, that doesn't mean a damn thing in the wide wide world of over 200 types of cancer. To truly cure cancer is impossible, and we all know that. The shiny happy folks just don't want to admit that their magic plant isn't magic. I mean, obviously I'm an advocate, but for fuck's sake, it's not a perfect infallible drug. They claim it has no side effects. Oh really? I can prove it does. It can cure epilepsy? Nope. Those two kids who stopped having seizures a few years after taking CBDs most likely grew out of their very specific types of epilepsy, which happens often. Cannabis cures autism? Fuck no. Nothing does.
Sorry, I have that same issue as you when it comes to people preaching botanical "cures" for major diseases.
I'm lucky I can take supplements and have them all be effective. I'm lucky that the drugs I take are working. But I am an individual case. And this individual case gets fucking side effects from certain magic plants depending on the circumstance. Sigh. Anyway.