Thursday, March 11, 2010

Keeping an Open Mind

I really hate living in a neighborhood with an HOA (Home Owners' Association). I look forward to the day when we can sell this stupid place and get out from under the $300/ month fees we pay, which are used for half-million dollar unnecessary paving projects and annoying landscapers who use leafblowers every tuesday from 7am to 4pm, and random jackhammer projects also starting at the crack of dawn. Then, when I have a valid concern, such as the fact that my gutters drain into my driveway instead of the garden, turning my driveway into a sheet of ice every time it snows/ melts/ refreezes (which was pretty much 3 solid months this year), and I bring it up, the answer, before I even finish stating the problem is "NO, we can't change it, can't afford it, can't change things from the original plans, don't even bother asking, not gonna happen."

Every time I go to the car it's a serious challenge not to fall and break my neck. And what would a project like re-routing gutters from the driveway to the garden on the front side of one unit cost? A helluva lot less than a half million dollar paving project, which, by the way, no one in the community wanted, except the people on the board and the lawyers who shouted us down in the meeting. I will never go to another homeowners' meeting again, because they are not interested in the voices of the homeowners. It was so one-sided, us against them, the people who actually own the homes being shouted down by the board who supposedly represents us, and the lawyer and management company who are paid for by our fees, that the entire group of homeowners, during this meeting were muttering about moving out. If we all could have sold our homes right there on the spot, there would have been a mass exodus. But we are all powerless, and they know it.

What has this got to do with anything? It's exactly like being a patient in the so-called health "care" system. We pay tons of money and instead of getting cared for, we are abused, ignored, not listened to, and when we have valid concerns, they are often not addressed. (I realize there are a few good doctors out there, but I'm talking about the general experience, the majority of what's going on out there). And just like the stupid HOA, there is nowhere else to go. It's not like you can choose to not be sick and poof, you're not, anymore than I can just unload my house (like everyone else, we can't sell until and unless it goes back up- WAY back up in value. we're trapped, just like anyone with a chronic illness).

I'm rambling, and that's because I'm really mad.
But bottom line what makes me mad about both health care and the stupid HOA, who can kiss my septic tank (i'm not letting them near my butt- I don't trust them!), is that these people are PROBLEM-FOCUSED! They refuse to even look for solutions. I have a problem, they say too bad, stuff it. But when it's their problem, every bit of everyone's resources goes towards dealing with it- without even thinking maybe there's a cheaper way to deal with this, so there's some resources left over when someone else has issues that need to be addressed. everything goes toa few, nothing to everyone else, despite the fact that everyone contributes. Both the HOA and health care.

Concrete example from health care: chelation therapy. Cheaper, by 10-fold, and far far safer than open-heart surgery. Chelation therapy removes plaque from arteries by a safe IV drip treatment given about 2 times a week, for about 20-40 treatments. cost, around $5000. No one dies from chelation therapy. No one. Heart surgery is $50,000 plus. The death rate for open-heart surgery are 2-5%. If the death rate for chelation therapy was that high, it would be shut down. Meanwhile, cardiologists get chelation therapy for themselves, but refuse to tell their patients about it.

The only way out of these corrupt, unjust systems is to not participate. And in order to do that, you have to take charge, be solution oriented, think beyond the obvious worn-out solutions, (not all diseases are caused by genetics are viruses, and drugs are surgeries are not the only solutions; not only that, they are not very good solutions in most cases- come on research people, use your brains! If the Easter egg wasn't behind the tree the last 10 times you looked, maybe it's time to look somewhere else! Of course, if drug companies are funding the research, the research is only going to be on drugs. Until the broccoli foundation starts funding some trials, we're not going to learn about the effects of diet on well-being. No real money to be made in broccoli, it seems).

Unlike some people who shall remain nameless (and faceless, and obnoxious and in control of the homeowners' association), in order to deal with my problems, whether they be my household or my health, my first reflex is not to throw a ton of money at the problem. In most cases, you can't buy solutions to your problems. You ask other people how they dealt with it, or a similar problem. You picture what a solution would look like. You educate yourself. You try things, even when people call you crazy. You keep trying things. You keep what works, and ditch what doesn't. You surround yourself with people who believe there is hope. You never give up, and you never accept "there is no answer" as an answer. That wasn't acceptable in 8th grade algebra, and it's not acceptable now.

One day I will escape the tyranny of the HOA, and I will never look back, lest I too turn into a pillar of bureaucratic BS. And one day, too, I will escape the tyranny of lupus, fibro, and all the other related syndromes that have attached themselves to what should be my well-being. I will be happy, I will be whole, I will be free. Mark my words. I am looking for and working towards solutions every day. I will not be oppressed!

keep looking

Thought for the day:
"Never must the physician say, the disease is incurable. By that admission he denies God,
our Creator; he doubts Nature with her profuseness of hidden powers and mysteries."

Quoted from the last page of the book "THE MEDICAL FOLLIES" printed
in 1925 and written by Morris Fishbein, M.D.
Editor of the Journal of the American Medical Association

Seriously- JAMA!

sun, tanning, lupus

Like all the rest of you with lupus, I had to give up sun-worship.
This makes me incredibly sad for several reasons.

I love being outside in warm weather. I love the beach. I love to swim. I love lying in the sun like a lizard and getting all hot, then diving into cold water. And now when I'm outside in the sun for any amount of time, I can't enjoy myself because I'm filled with anxiety about whether my enjoyment is going to cost me my kidneys. I miss the doses of natural vitamin D and the smile a sunny day puts on my face. I feel like a vampire.

Aside from eradicating lupus from my life, which I'm always working on, I don't have any solution to all this.

But I do have a tiny temporary occasional solution to the one other reason I grieve my sun-worshipping days (I also miss how great I look with a tan, sun-kissed hair). I met someone in an acting class I was taking who does spray-tanning in NY city, and she uses all natural ingredients.
So, I think I might, for a special occasion (friend's wedding in July) treat myself to a "tan" just once, so I can feel like myself.

Meanwhile, I have found that when my lupus is under control, I can spend small amounts of time in the sun (not long enough to get a burn- like 10-15 minutes) and have no ill effects. Obviously, we have to be very careful with this, but FYI, some of us do become less sun-sensitive when the disease goes into remission.

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"