Rocky Steps

One of the important parts of recovery is to celebrate every milestone. So even though it was a week after the event, today we celebrated my fabulous blood tests by going to Philly to run the Rocky Steps! I made it- i ran (well, jogged, but i didn't walk!) all 96 steps, not once but *twice*! whew!

It was a beautiful day and we got some pictures and even some video (the video is going to take a little while to retrieve from the cameras onto the computer and compile).
I feel I'm slowing reclaiming all my old superpowers of my youth. I look forward to going back to the steps someday later this year and running them two at a time. Maybe I'll even think of something else I want to do to mark the next milestone in health.

My milestones were much smaller after I had the stroke- I couldn't have dreamed of running stairs. in fact, at one point I was trapped in the house I was staying in because I couldn't get up and down the one stair that led to the outside world. I had people take pictures of me then, because I knew if I didn't, no one who hadn't witnessed it themselves would believe I had ever been so sick. I was so sure I would get well and look and feel good again that people would not believe I was ever so ill.

So back then, I would celebrate my victories like being able to wear shoes again, or seeing improvements in blood tests, or being able to get up and down the one stair and go outside by going swimming in the pool out back, or going to the beach with a friend, or going to the thrift shop (Florida's thrift shops are just amazing), or going to a concert.

I've got a great book I've been enjoying put together by a reporter and a photographer who spent a year interviewing people running the Rocky steps to celebrate various occasions, like recovering from cancer, or getting married:

What I Learned at the Conference

I spent several days in baltimore this past week attending a conference called "Thinking Outside the Box"- about re-designing health care. The conference was a joint project between School for Designing Society and Gesundheit! Institute, which is the brainchild of Patch Adams (remember the movie starring Robin Williams? This is the actual guy.) Yes, I met Patch, yes he's sincere, extremely bright, thoughtful, and well-read, and yes I got to speak directly to him about my questions and concerns. But that is not why I went.

I had a fuzzy agenda as to why I was attending this conference. I do not work in health care- I hang out in health care a lot (as a patient) and am acutely aware of the system's many shortcomings. I think I came because I got tired of pointing out its flaws and I wanted to hear people talk about solutions. Here is what I learned:

- there is plenty of pain to go around. Not only are the patients suffering, the doctors, nurses, and administrators are all suffering from an abusive, oppressive system that sucks the meaning and joy out of their life's calling. The health care providers are just as frustrated as the patients are.

- there is also plenty of creativity to go around, and lots of ideas. there is more than one solution out there. Doctors can leave and start their own practice. We could have community hospitals. (Could my community hijack our nearby hospital and fix it the way the folks at Nettlehorst took over their public school? I wonder! Maybe there's an opportunity to grab one of those abandoned hospitals in New Orleans and build it in the image of a real community hospital.)

-There are things patients can do to improve their own health care experience and to reach through the cloud of insanity and build a relationship with the doctor: do something silly to grab their attention, hug them, ask them how they're doing, bring them cookies, compliment them, or do whatever you would do in order to get anyone to like you, white lab coat or not. Further, instead of assuming everyone is a jerk until proven otherwise, it is just as accurate but more constructive (and compassionate) to say everyone is lonely and hurting until proven otherwise.

-Single-payer health care (universal care provided by the government) would not only be more humane, it would actually be far less expensive than what we have now. It's not an option to just not pay for some people, because we're already paying- only it costs more because they wait until it's a crisis (therefore expensive) to seek treatment.
The humane thing is also the economical thing to do.

-there were so many amazing souls at this gathering that there wasn't time to hear from every one of them. People who care deeply and are passionate about making a difference. It's good to know you're not alone.

-If you're parking in Baltimore, bring lots of quarters. :)

Test results back: No More Lupus!

I just got back from the rheumatologist and my tests for lupus all came back NEGATIVE! Negative ANA and Negative for double-stranded DNA. I'm not sure they've ever been negative in the 16 years since diagnosis.

If my doctor was a jerk, he might have said I’d been misdiagnosed and never had lupus in the first place. It’s hard to say that in the face of my having had pretty much every lupus symptom a person can have- and yet there are many doctors who do this.

The idea that someone can test negative after years of testing positive- or that someone can get completely better from a disease that in their minds has no cure- it just rocks their world. So, many doctors just decide to negate your entire experience – both the pain and suffering and the hard work you did to get better- by saying you never had lupus in the first place.

Thankfully my doctor is not one of those folks and his pen was actually moving while I babbled about Chi Gung and the gluten-free dairy-free diet. And this is how we start a health revolution: taking care of ourselves, and letting doctors know when we find a non-drug therapy that works. Doctors get information from drug reps and patients. We may not feel like it sometimes, but we are just as important as those drug reps.

If enough people start mentioning Chi Gung or gluten free diets, or any other effective alternative treatments, doctors will start taking it seriously and suggesting it to their patients. And patients will start taking back control of their health. That alone is a revolutionary act, which will lead to a better sense of well-being and hope. Those patients will fare better, thus raising the doctors’ eyebrows again about these methods of self-care that we can use to supplement whatever they prescribe, and he/she will open their minds even more to the idea of using complementary medicine.

I just called a friend of mine to tell her my tests came back negative. She and I were hanging out just a couple weeks ago and I was telling her “My tests are going to come back negative for lupus and some doctor is going to claim that I was misdiagnosed, even though I’ve been diagnosed by probably 20 different doctors by now, tested positive consistently for 16 years, and been through every lupus symptom in the book. And it’s going to make me mad, but in the end, the important thing is I’m recovered from the illness and I know the truth in my heart.” I also have the truth in my reams of lab results.

The biggest leaps in my recovery this time have come since quitting drinking diet soda, starting Chi Gung, and going on the gluten-free/ diary-free diet. The final piece of the puzzle was my declaring and steadfastly believing that I would get the lab results to say “NEGATIVE” for lupus, and they did exactly that today.

How to celebrate? I joked to my husband that we should go out for gluten and diet coke. I thought his face was going to shatter to pieces with all the contortions it was going into. Nope, I’m not going back to my old ways- I’m moving forward, and I can’t think of a better way to celebrate being strong and healthy than to go to Philly and run the Rocky steps! Today, the great lab test results- tomorrow, the world!

Where in the World is Carla?

Hey everybody!
I haven't posted for a while, as my focus has been completely on my new project: writing a book!

i got a book deal with a small press right after my last post (Fixodent and forget it). The book is set to come out in june. i imagine it'll be a paperback and a reasonable price. that's what i'm shooting for anyhow.

it's a book of humorous essays on illness, hospitals, doctors, drugs, and getting better. the book has some of the same topics as the blog, but it's going to be far more organized. and it won't have nearly as many typos and run-on sentences as my blog. but i promise to keep it sassy.

it's due this week!
i may be just a little late on the deadline because i have to just have the sense to stop when i'm exhausted. no need to create another volume of hospital stories by having another escapade with lupus. i don't deserve that much fun ;)
besides, after 3 times around with this thing, i think i have enough hospital horror stories.

i'll be tapping away on ym computer tonight, tomorrow, and beyond.
meanwhile, i've gone back to doing a little guitar teaching to keep some money coming in. i'm good at it, i enjoy it, and i'm glad to be back to it. i stopped when i moved to new jersey (you lose your students when you move...) and i just spent all my time on the road performing, which is a good way to run down you health.

if any of you have XM radio, check out all the great programs on the Oprah channel, XM 156. wow. so inspiring. i listen jsut about every day, usually to Dr Oz's show. if he were my doctor, i'd have a much higher opinion of the medical community.

well i better sign off for now. just wanted to jot something here so you'd know that no news was good news. i'm well, i'm taking my pills and vitamins, i'm going to the gym, and life is good!

Fixodent and forget it: lessons from a denture commercial

In 2002, I had a major health fiasco- and had no insurance. I had lost my insurance after being fired from my job for being sick. So I went to a teaching hospital, where they took indigent patients (indigent= no money. Not to be confused with indigenous, which is "native people," such as Aborigines or Native American Indians. Although I was born in a hospital, so I guess I was indigenous as well...)

You're not allowed to walk around much in the hospital. Which is quite torturous when you're hopped up on prednisone and want to jump out of your skin. Which, come to think of it, is probably why the windows in hospitals don't open. I entered the hospital shuffling in with a cane and left in a wheelchair. After 8 days of lying in bed, my legs were completely atrophied. Of course, this happens to astronauts too, so I was in good company.

So, after having the physical therapist put a leash around my waist and remind me how to walk for future attempts, I was wheeled out, and my follow-up appointments with the kidney doctor were set at the indigent clinic (indigent= no money. Remember the no money no insurance thing- it's key to the next part of the story). Well the clinic sees all its patients on either Tuesday or Thursday. I was a Tuesday patient, and all of us indigents had the same appointment time: 9am. And it was first-come, first served, so we all showed up at 7:30am for a 9:00am appointment. At 9am, the would start calling us to get our weight and blood pressure, then back to the waiting room, all of us with kidney failure, all of us sitting there usually until noon before being seen, with the water draining down to our ankles as our legs swelled bigger by the hour. I already had feet so swollen I could only wear slippers.

The final insult was that every time I went, I had a different doctor. So every single time, I had to give my entire medical history and re-live all the bleak dark traumatic crap I was trying so hard to not think about, like a crime victim having to testify over and over. About the 3rd time, I had had enough. I brought in a 13-page typed medical history with all my illnesses, allergies, symptoms, surgeries, corresponding dates, and the names and addresses of all the doctors I could remember. I handed it to the new doc and he said "oh, no. I have to take it orally." And I said "Why? So you can pretend to have a rapport with me?" I mean it's not like he was going to be there next month, and it's not like the next doc was going to be able to read anything he wrote on my chart. Furthermore, when you're on 9 drugs, your memory is not exactly tack-sharp.

While my Mr. one-night-stand of a doctor wasn't interested in my hours of meticulous record compilation, I did create a valuable resource that other folks do find useful, especially alternative practitioners such as acupuncturists. A lot of us with chronic illnesses do keep a health file of our own, because if you move or go to several specialists, or both (like me- although I now have insurance and get to see the same doc every appointment, I've moved a *lot*, which means changing doctors a lot)... You really have to be the keeper of your own file.

Get copies of your labs if you can, and keep them. The HIPPA laws require doctors to give you copies of your file, though they are allowed to charge up to $2/ page for them. Doctors (even those who actually do have a rapport with you) routinely throw records away after 7 years, and then they are *gone.* And that leaves you in the position of having to re-live the crime all over again in agonizing detail.

When I was 6, we moved away for one year. In our new neighborhood, we had to walk a mile each way to school and back, and again at lunchtime. Every morning, my mom made me recite our address. To this day, I remember it, in the sing-songy way I used to play it back to Mom every morning. 390 32nd street, Boulder Colorado, 80303. I was very happy in Boulder, so having that address in my head brings back nothing but sweet memories. But I have no desire to have a sing-songy list of every health problem I've ever experienced rattling around in my consciousness like an never-ending nightmare. This is the real reason I made my health file, so that, in the words of the denture adhesive "Fixodent and forget it," I can write it down, get it out of my brain, and think about something else. Like 390 32nd street.