Diana's Blog

Over the last few days, I've been feeling more like myself, energetically - i.e., coming out of a slump where my body couldn't recover properly from the flu b/c I was on Humira, an immunosuppressant drug for psoriasis.

OK, I work pretty hard at perpetuating a positive attitude. But right now, I'm using this space to vent briefly on the confounding paradox that is my immune system.

The Humira partially cleared my skin, but not enough to make it woth feeling frequently sick and immunosuppressed. Today as I was out riding my bike and feeling so grateful to be able to be active again (even if I'm not 100%), I noticed some red spots on leg areas that had been temporarily clear. It's truly amazing, perplexing, etc... Feeling good overal = bad skin, and vice-versa. Do I succumb to chronic fatigue, and get a partial relief from the itching and depression and extremely high maintenance of applying topical steroids to a thousand spots with a Q-tip, or have energy, but accept the burden of maintenance? -- And be more unhappy/frustrated about the painful and ugly psoriasis symptoms?

For right now I've chosen having energy (not to mention avoiding the risks associated with Humira - cancer, lymphona, questionable safety during pregnancy, etc.). This means I still go to the dermatologist's office three times a week - yes, three times - for UV light treatment. I don't know yet whether this will be enough to maintain my sanity, but I'm hopeful! Now if I could fenagle a way through our beastly healthcare system, to get a light box for home - and save hours every week!

...Speaking of healthcare, Cigna is currently giving me flak about the UV light treatment, using whatever language they can imagine to make it so I have to pay a co-pay. Three treatments = $60 per week! This is not realistic, or justifiable. You go to the doctor's office, stand in a tight UV chamber for a couple minutes, and leave (without seeing a doctor). For whatever reason, the derm's billing service has a weird policy of billing UV treatment under a doctor's name - but it's a doctor I've never even heard of, who works in an entirely different office. Cigna has twisted this around to mean that it's still an "office visit" of some kind.

According to the National Psoriasis Foundation, UV treatment is to be billed as a "non-elective maintenane therapy" and covered 100% by insurance companies.

And so I embark on my 10th or so phone call about this issue....

A couple of weeks ago, Greg acquired an iPhone. I say "acquired" in the sense that it is like another limb or integral body part. It might more aptly be named "CrackPod" or the equivalent. Needless to say, he has a hopeless crush on his new gadget. What's more, I want one too! (I really was looking for a phone that would also let me check email, but found the Blackberry's keyboard too tiny. I mean, not all fingers are that dainty!)

Meanwhile, I won not one, but two shiny new gadgets - and they both arrived today! Funny thing, the FedEx truck just arrived as I was writing the previous sentence (literally) and in came the HTC Fuze phone I've won. First thing this morning, there was an iPod Nano on our doorstep. ...Hmm, maybe this Fuze will fit the bill!

How did I win these things? The Nano was the drawing prize for having done a brief email survey for Getty Images, from whom I've purchased marketing stock material in the past. The survey took me about 90 seconds of "zone-out" time, between other work. The Fuze was an instant win from a sweepstakes put on by the sponsor. I haven't been random-draw contesting much lately, but I do continue to enter creative copywriting/advertising/recipe/etc. contests once in awhile. It doesn't feel like work; the ideas strike me while I'm drifting off to sleep or on my bike - and I've been lucky enough to cover my a** with the cash winnings.

(Did you know that last year, the winner of the Pillsbury Bake-off got $1M for wrapping Pillsbury P.B. cookie dough around a creamy peanut butter filling? Tens of thousands enter each year, so the odds are low...but the prize $ they give away is mind-boggling! There are always several $5K category prizes, too.)

Alright, back to the "real work..."

So Greg and I were cooking last night, and between the oven, toaster oven, and microwave, there was a lot of beeping. The toaster oven, in its eagerness to give feedback, not only beeps when the set temperature is reached or the food is done, but at every touch of a button. With so much beeping, it became hard to distinguish meaningful beeps from superfluous ones. And then it's like online ads...you start tuning them out!

I wonder how many beeps we hear in one day? From an alarm clock (if you use one), to a cell phone waking up, to the blips of logging on, to some microwave action, to the car door or the iPhone/Blackberry to the elevator to the car door again to a truck backing up to the phone again to some more digital toaster action, to the beeping of any number of digital devices in the workplace, to the grocery store checkstand, and sometimes a simulateneous chorus of two or three of these. I'm sure I"m not the first one writing about this, but we live with a LOT of beeping. I'm either becoming assimilated or desensitized...

So the posts get fewer and farther between; but it's only because I'm putting more into fitness work and a related blog. (Feel free to check it out at http://lovejoyfitness.com/ or http://lovejoyfitness.blogspot.com/.)

While I still don't have a regular rhythm to every day, I feel momentum building. It has been tough, in these economic times, to be on my own trying to start up a business. But with that quality my husband not-always-affectionately describes as "a dog who won't let go of the leg," I persist. I have some new clients, and as a bonus I'm covering the local Training Transition tri group while the main coach is on vacation. This latter part is hardly like "work" - yes, I'm leading workouts, giving tips left and right, watching each individual in the group...but it's such a great group of people that it feels like recreation. :>

One thing I especially like about this work is that it's inherently social. Being slightly shy and susceptible to environmental stress-energy made a bad recipe for working in a cubicle. You're in a cube-farm, yet essentially isolated...and you learn that coming out of your cube or making yourself visible often results in more work being dumped on your head.

I really think social isolation is a big part of our modern dilemma. I believe far fewer people would feel anxious, overly stressed, inadequate, lonely or obsessive if we just got off the treadmill and sat - or danced - around a campfire more often! I'm not talking about Facebook, MySpace or LinkedIn; these do not count in my mind as antidotes to isolation. --So how to break the inertia? One little person at a time, I guess. --And by being a bearer of *positive* energy, so that energy benefits others instead of bringing them down.

Well, the only way to find out if some treatment or other helps with psoriasis is to try it...so on I go. I have a few insights, which are clearer now looking back at the last few years. Having no control group of myself, I don't know if I'm right, but here's what I suspect:

Sleeping in a hypobaric tent may have slowed down the progression of my psoriasis. During that time, my stress level increased (re: my job), and the spots on my lower legs seemed to intensify. But, it was as if something was held in check. (To complicate things, the slowed immune response meant I got sick more easily, which stimulated the immune response, and caused skin outbreaks.) The rapid worsening and creeping-all-over only began after I got out of the tent in 2007. So, tent = good for suppressing auto-immune disorders; but ultimately bad for overall energy and immune-system strength. Lovely paradox.

The psoriasis response in 2007-2008 seemed like a rebound effect; not only did the skin get worse, but it seemed to be moving very quickly, as if to make up for lost time.

When I tried hyperbaric oxygen therapy recently (after researching how it speeds up repair of body tissues), I felt healthier and more energetic, but my skin, which had begun improving in response to Humira (biologic immunosuppressant), suddenly stagnated and even made a turn for the worse again. Two days after my last hyperbaric session, the skin began to calm down again. In the meantime I'd also added PUVA (narrow-band UV light), thinking the Humira wasn't working for me. I know, seems chaotic and unscientific, but...the need for relief from psoriasis and its multitide of related frustrations is powerful.

And, with this stuff, you only have answers in hindsight! Currently, I believe Humira + UV light is helping the skin. How to boost or stabilize my energy levels remains mysterious, as effective solutions only seem to make my skin explode. Right now I'm hoping my attempt at tapering off topical steroids is successful. Maybe, in a year or two, my skin will rebuild the outer layer that has been dissolved by steroids, and tears in response to the tiniest of twigs!

Given how long it can take for the immune system to adjust to change, I still believe that in time, my skin will become calmer on its own - time being the key word.

I'm wondering if I should start carrying around little cheat-sheets with a bulleted summary of this problem, for the people who ask, "What happened to your skin? Psoriasis? Have you tried xx?"... 

Sara, my best friend from high school...is pregnant! Yaaaaaay, Saraaaa! I am ecstatic for her.

Sara is a mind-bogglingly talented bassoonist and music teacher. Her husband Harris is also a crackerjack musician. Any guesses as to whether their kid will have musical talent?

Naturally, Sara has a bunch of cool friends, musicians and artists and helper-types. Hers was the best baby shower I've ever been to - just a fun party with lots of food. --Not just any food, but delicious, gourmet, healthy food made by the host, Ellen. She made crepes, and then had fully-stocked savory and sweet filling tables. There was spinach-mushroom stir-fry, some other tasty greens, butternut squash/onion filling, chicken/cauliflower gravy; and bananas, fresh berries, maple syrup, Nutella, honey, sugar...and I haven't even started on dessert.

I miss Sara since she has been in New York!

When I parked in the driveway yesterday late afternoon, I heard an intense humming - maybe the neighbor's pool pump? Maybe someone vacuuming? But the sound was closer...bees?

Apparently, our trees in front burst into blossom every Feb. I looked into the tree for a long moment; slowly they came into focus - a fair battalion of bees! Imagine what a tree covered in tiny blossoms must look like...it's bee nirvana! The mother lode of blossoms!

I feel different lately. As in, more like myself. The yawning gap between what I'm doing with my days (and how I feel I have to act) and what I really want to do and be has shrunk down to a small crevice; it could even disappear altogether, if I'm patient and keep listening quietly to what I really need. I find that in working on something that's so much closer to my heart, my real self comes out and seems to make others light up too. Every day now, sometimes several times a day, I have that warm ball in my chest, as I stop and think of the great things I have and the people I love.

So many good things have happened in the last few months, all part of a positive process. I find I can actually see myself doing things I couldn't quite see before. I hesitate to say much more; I'd rather let myself keep working on this progression. As more good things materialize, I'll be posting specifics...but I'm in the middle of an exciting (and scary) transition to a new job as a personal trainer.

Aside: It's so funny how we let fear stop us from doing things. When you're afraid, other people seem so confident, so capable and "together." How do they do it? And then, you realize two things: One, you're so capable it's silly you thought for a moment that you weren't; and two, *everyone is scared sometimes.* What's more, people who seem hyper-productive in one area are often doing that extra work because they're *avoiding other things they fear more.*

I figure, that little edge of fear or nervousness about something you really want to do means...just do it!

Nonsequitur comment...I love making food! This was a simple grilled-veggie project - just stuck 'em in a Ziploc with soy sauce (Bragg's, actually), a bit of fish sauce, tons of garlic and ginger (TONS), mirin and olive oil, and then grilled. :> The portabella mushrooms in particular were tasty!   

Here’s some of the low-down from our Hawaii trip...

On Kauai, we stayed at Bed, Breakfast & Beach, in Hanalei: http://www.bestvacationinparadise.com/bandb.htm

It was a five-minute walk to Hanalei Bay – literally, five minutes and you were in the water! I really liked this place, and felt we got a lot for our money. The Bali Hai Suite upstairs is quite large (enough for a group of three or four), and has a partial view of the bay. Unfortunately, the co-owners are working on selling the place (for a cool 2.5 million).

The dining highlights in Hanalei were…

-       Hanalei Mixed Plate, a roadside café run by two Asian guys cooking stir-fry in industrial-sized woks. Fresh, super-cheap, super-tasty, Asian-style food – and it’s quick!

-       Sushi place – can’t remember the new name right now; used to be Sushi Blues; it’s the only sushi place in Hanalei. Excellent, fresh fish.

-       Bubba’s Burgers – I’m not really into burgers with white-flour buns, but I wanted to try it when I saw the beef was locally produced, range-fed, etc. The trappings were nothing special, but this was the best beef hamburger I’d had in many years! The patties come in a range of sizes …And, it’s cheap!

-       Papaya’s Natural Foods, a market like a tiny Whole Foods, in the center of town.

Maui 

We stayed on west Maui, in Honokawai, about a 15-minute drive north of downtown Lahaina. Most of the condos and resorts along that side are right on the beach. There was one winter “storm” while we were there, a day’s worth of rain and heavy winds; but even then, conditions were pretty mild.

(We didn’t go up to Haleakala, as the day we’d planned to do it was rainy, and all the weather reports for 10,000 ft. sounded terrible – 45 MPH winds, chill factor below zero, clouds, rain. We checked a webcam, and all we saw was a thick, windy-looking fog. Apparently it cleared up some before we left, though I think it’s very cold up there in winter no matter what.)

Our place was the Hale Kai resort; as I was telling Mom, we ended up with an upgraded unit with a decent bed, but were first placed in a second-rate unit with a really crappy bed! (I persisted politely until our needs were fulfilled.) There’s a crowd of retired, repeat customers at this place, most of whom know each other. They tend to reserve the best units early.

My first choice was the Kuleana resort, up the road from us: http://kuleanaresorts.com/rooms.html# It looked nice up-close, though I didn’t get to see inside. If we went back, I’d probably try that place, as it’s a short walk from a surf spot we liked.

Both are about halfway between downtown Lahaina and Honolua Bay, which I surmised was the premier snorkeling spot on west Maui. There are several reefs and mini-bays at Honolua, each of which hosts unique marine life. One reef is home to sea turtles! We didn’t catch any turtles there b/c the winds had been up, but we got very close to both turtles and whales while surfing.

I would’ve like to take a ½-day snorkel trip to Molokini, or a day trip to Lanai. Some of the quieter spots out there are supposedly full of turtles. (Since surfing was a high priority, the waves determined how we spent some of our time.)

Honolua can be really calm (best for snorkeling), but if it’s windy, the water murks up. If the surf’s up, then the outer breaks are crowded with surfers.

We had several good dinners:

-       Kimo’s is an experience; I don’t think it has changed much in 30 years! Its atmosphere makes the food taste even better.

-       Roy’s was very good, but overpriced for what you got.

-       Farmer’s Market and Deli, in Honokawai – another natural foods market, but with several prepared-lunch options too: salad bar, hot bar, sandwhiches, etc. We tried five of their dips and dressings. I especially loved their Maui Onion dressing and Cashew Carrot dip. (I’m gonna make this dip – it’s basically cashews, carrots, garlic, vegenaise, and Bragg’s.)

-       The real standout was A Saigon Café, in the small town of Wailuku, just east of the Iao Needle (we hiked around there too, up to a nearby ridge and around the valley a bit. Parts of the ridge trail were a bit like bushwacking, and I had to cover my thinned leg skin so as not to get cut).

Probably the highlight of the trip for me was the Masters of Hawaiian Slack-Key Guitar concert (see my blog entry, http://dianalovejoy.com/dianalovejoy/blog/post/A-Dying-Art.aspx). They play every Wed. night at the Napili Kai Beach Resort. It was just over 2 hours, and tickets were $45 each – but worth every cent. I highly recommend it!

(A close second was our last day of surfing at “S-Turns” – glassy, fun, 4-6-foot waves, with an occasional bigger wave rolling through.)

The other night we had one of those magical moments, one that makes you feel you're exposed to something very special, and perhaps transient. It was a Masters of Hawaiian Slack Key Guitar concert, held in a big white tent in Napili, just north of where we were staying. They hold a concert every Wednesday; the audience was a mixture of tourists and regulars.

Host Gerorge Kahumoku Jr. is a master player who graced us with his pleasant fun-poking and his beautiful playing. I would describe his voice as a tree growing, something that comes right up out of the earth.

Led Kaapana had a more lilting style, but his flawless playing and caramel voice with its flowering falsettos captured me. This was about as close as you could come to being sung lullabies as an adult. Seizing an opportunity that I sensed would be rare, I bought his Grammy-nominated CD (which includes collaborations with Bob Brozman and others!), and had the artist sign it. Oooh, such things just can't be replicated!

Traditional Hawaiian music is endangered, though there are valiant efforts to keep parts of it alive. In encouraging contrast to the laid-back mastery of the older players, we also heard two "next generation" players. They clearly showed promise of great musicianship.

As an extra-cool bonus, we were treated by two hula performances - one being an impromptu guest appearance by a middle-aged local guy who rose from the audience, took off his shoes, and did one of the most graceful dances I've seen, in his jeans and white button shirt.

The strong, Maui winter winds and pummeled and rippled the big white tent so violently that at times it almost drowned out the melodic strumming. But the players continued, steady and unflappable. I hope this is an indication of the enduring power of this unique art.

Our stay in Hanalei was, as might be expected, pleasant, quiet, pleasant, quiet, and quiet (except for the roosters, who seemed to have day-night confusion, and crowed proudly at any and all hours). I recommend the B&B where we stayed, Bed & Breakfast by the Beach - nice accommodations, three-minute walk to Hanalei Bay, friendly - but genuine - co-owner who served us tropical fruit and tasty muffins...the only catch is, the place is up for sale, so I'm not sure how much longer it'll be there!

The bucolic nature of bayside Hanalei (a rather upscale town, judging by real estate prices) appears to be somewhat threatened...by the arrival of new homes. Construction is a daily affair. At least the developer seemed to be preserving the traditional style of Hanalei houses: roomy, multi-level  and full of windows (of course, so everyone can see the ocean). I hope the uniqueness of homes is preserved...

On the outskirts of town, the traditional homes are built on stilts, basically - allowing easy access to the underside of the house, preventing potential flood damage, and affording everyone that amazing view. You really only need a few feet to prevent flooding; but these people take their views seriously, as would I. Some of the first floors were built a good 1.5 stories off the ground - giant, sleepy tree-houses resting in their expansive beds of greenery.

Maui, by contrast, already is developed, developing, and developing some more. Lots of great dining, artistic activity...and a growing number of cookie-cutter houses. I wonder how much development it'd take to kill the truly unique island atmosphere? An infinite amount, I hope.