Let's Give Thanks for the "Evil" Pharmaceutical Industry!

After two years of Juli's multiple hospital admissions, mystery panic attacks, intractable vomiting and tremendous medical debt, my daughter's disease was finally diagnosed. It can be treated and possibly cured by a drug called Lamictal. The only problem was that the drug would cost almost $600 per month--a total deal-breaker, out of the realm of reality for her.

I went online and found the manufacturer of Lamictal, GlaxoSmithKline, and I called them. I explained the situation. The gentleman asked a few questions and then told me if my daughter and son-in-law's combined income was less than $36,000 a year, GSK could get her her medication today. They would email a voucher for a 60-day supply at any dispensing pharmacy for a $10 co-pay. Then, after they received a one-page form and a copy of last year's 1040 taxes, GSK would begin sending her 90-day supplies free of charge, for as long as she needed it.

I knew that there were programs, but I expected little more than maybe a coupon or a 10% discount. Unfortunately, I had bought into the all-too-familiar argument that Giant Pharma was "evil" (or at least irresponsible). Sure they spent an average of $1 Billion to develop every new drug they bring to market, and spent almost 10 years on paperwork to get it through the clinical trials and government-approval phases, but what good is a new miracle drug if no one can afford it?

Turns out that they give away the drugs to those who need them--but we never hear about THAT when the politicians are pontificating. I encourage everyone in a similar situation to call the drug manufacturer--you might be surprised at what they can do for you.

*************

Wednesday's oncology appointment when swimmingly well. I am now a 2 1/2 year cancer survivor, with NED (no evidence of disease), and an excellent prognosis. Woo-Hoo!

Back on a Plane!

Seattle has feted my departure today by raining on my parade. We've had uncommonly gorgeous weather for a week, but today, the water is pouring down from the sky. Fine. I'm outta here.

I had breakfast with daughter Juli, son Alex and friend Christy at Pike Place Market yesterday. A wonderful send off. We ended the day with an appointment with Dr. Casabona to go over all the test results. Juli has some decisions to make about medication regimens, but all the problems she presented two months ago seem to be under control now. The doctor was pleased. I always walk out of her office feeling like my head is stuffed full of new information.

Despite the reason for my long visit, I am so glad to have had this time with my babes. Now it's off to Los Angeles to spend two weeks with my mom and brother Jerry (who is living at mom's house while he gets his feet wet with a new job and looks for a place to live). Then, finally and blessedly home to my mountain!

All good stuff.

An Exploring Day

Now that my time here is short, I've decided to spend today in Pioneer Square. I've always wanted to take the Seattle Underground Tour, ever since I saw it on the old Night Stalker television series in the 1970s. Juli also informs me that the world's best toy store and a knit shop are also in the vicinity. Lunch will be at Grand Central Bakery, home of the world's greatest bread outside of Paris.

I can't believe it's almost time to go. Juli is doing so much better (not that we know yet why she gets intermittently, violently sick), working again, back to her cheerful, delightful self. She's put on a little weight, and gotten her confidence back. She has a good doctor, and medical insurance is coming July 1, due to Kerne's new job.

The bathroom is painted, the dishes and laundry are getting done and the bills are getting paid.

The real gift is the time we have had together. We are closer than ever, and I feel as though I have reconnected with my daughter after a long separation of time and distance.

Quick Update!

Once again, my girl comes through with flying colors! A beautiful stomach and colon, no abnormalities! Again, we are thankful for all the awful things that it is NOT!

Happy Birthday! Happy Easter!

I had a nice weekend with Brother Jerry's family. Niece Bonnie had her 21st birthday! How nice it was to have a party of loving family and treasured friends, instead of a drunken bacchanal that wouldn't be remembered.

On Sunday, we dragged ourselves up out of bed and prepared to attend the early service at Jerry and Kellie's church. We were momentarily delayed by a last minute conflagration in the microwave, necessitating extinguishing the flaming slag-heap of what was once a sweet potato, and throwing open all the windows to get the smoke out of the house.

Upon entering the sanctuary however, we noticed (by surreptitiously sniffing each other) that our whole family smelled to high heaven of burning yams! While no one outright asked if our Easter Dinner was burning, you could tell during the Pax that they all suspected something was amiss.

Other than being scent-pariahs, we had a great time. A bonafide orchestra (!) complete with 10 violins, 2 cellos and a bass sawed away with expertise, accompanied by piano, drums, guitar, and several trumpets in the back. The horns had some tortured moments during the fanfares, but everyone played with enthusiasm. The choir was outstanding.

We ended the day by taking Jerry to the airport for his work week in Southern California, and Kellie and I met niece Angela for dinner at the Whole Foods Market. Kellie even gave me a ride back to Queen Anne so I wouldn't have to brave the bus again.

Juli had a good weekend at work, thank heavens. Now that I'm back, we can start getting her ready for her big GI tests on Thursday.

Hieronymus Bus

Take a look at the painting above (Hieronymus Bosch, circa 1500 c.e.) and refer back to it as I relate the saga of Juli and I on the #4 bus to Harborview Medical Center on Wednesday:

I figured out a direct bus route from Queen Anne to Harborview, woke Juli ("we have to catch a bus in 20 minutes!"), and we hoofed up to the Metro Market. We took two seats near the middle of the bus. Imagine my chagrin as we wound around the back side of Queen Anne hill and ended up on 3rd street, about 15 minutes later than if we had taken the usual #2 or #13! I was about to do a major mea culpa to Juli on how stupid I was to have routed us on the #4, when the next passenger came aboard with a fake bus pass. Or was it expired? In any case, the bus driver told him that he couldn't get on, and instead, he blew her off and strode down the aisle to take a seat. It was an omen of greater outrages to come.

At Third & Pine, the unwashed masses crammed aboard, filling the bus to capacity in the aisles, complete with many pieces of luggage, including a man with a bucket of cat litter on a wheeled cart (what?), and a screaming fight broke out between two women in the back.

"Get your @#$%&*! hands off my bag, @#$%&*!"
"Who you callin' a @#$%&*!, @#$%&*! ?"
Etc.

At Third and Seneca, the bus driver had to lower the handicap lift, and started shooing passengers out of their seats to accomodate two wheelchairs coming aboard. There was an ugly, grumbling mood emerging as everyone packed towards the back even tighter. The screaming women-fight continued, and was now joined by a certified crazy, yelling at his dead father:

"Daddy, I know you're up in heaven with Mama now, but even though it's been three weeks since you died, I've got to tell you about the time I set fire to the cat..." Etc.

While this was going on, the wheelchaired passengers were getting on, the bus driver was struggling with the safety straps and yelling for everyone to move back, move further back. This was met with further grumbling, and people in the back started yelling, "No room, no room!"

It was beginning to look like we would be late for Juli's neurology appointment. At the corner of Third and James, eight old Chinese women, chattering loudly at each other in non-stop Mandarin, got on the bus. The bus driver tried to prevent them from getting on board, but they just kept yelling and shoving everyone tighter until the aisles looked like the proverbial sardine can. "Oh good," said Juli, "that was just what this bus was missing!" The bus belched, groaned and turned up the steep hill.

At the next corner, one of the wheelchaired passengers yelled that he needed to alight. The whole bus started chanting "Off, off, off!" The bus driver stopped on the side of the hill, tried to convince the Chinese women that they needed to get off so she could get the wheelchair out, but they refused to budge. The screaming fight was still going on, someone in the back started wailing that there was no air, and everyone squeezed even tighter, while the poor man in the non-motorized wheelchair struggled to roll himself uphill to get to the ramp, sliding backwards several times. No one packed around him thought to give him a helping push, but the man behind me yelled, "Lemme off the bus, you ol' hag!" Several other passengers tittered at this supposed witticism.

The whole bus was in full-fledged revolt by the time we got to Ninth. The man behind me kept yelling imprecations at the bus driver, ending each with "you ol' hag." The titterers continued tittering every time he said it. Up near the front, a woman was yelling at the bus driver while she was trying to drive, "I'm going to get you fired! You don't care about nothin' and as soon as I get off this @#$%&*! bus, I'm going to get your @#$%&*! fired!" The crazy was still calling to his dead father. The odor of Cat Litter Bucket-Man was wafting. The two women in back were still screaming about who had whose hands on the bag.

At last, the ride from hell stopped at Ninth & Jefferson. It was like watching a clown car disgorge an endless parade of passengers. Most stopped to insult or yell at the driver as they debarked, and the most verbal of the rabble kept up the rudeness instead of just getting off the bus. Juli and I could finally stand up from our seats and get off.

"Ack!" said Jules, "I feel like I need to take a shower!"

"I've been rolling my eyes for so long, I can't focus," I complained.

"I thought about what would happen next, " Juli mused, "but all I could think of was that the roof hatches would open and snakes would pour through."

"Well, thank God THAT didn't happen!"

We kept shaking our heads and sighing dismay at the complete lack of civility we had just witnessed. And to be honest, laughing at each individual piece of the nightmare we just experienced.

"The Cat Litter Guy!"
"The eight Chinese!"
"The dead-father man!"
"The bus pass scofflaw!"

When the nurse at the desk told us we were 3 hours early (I had gotten the appointment time wrong), we walked in the sunshine, went to the art museum and had lunch in the cafe. Her appointment was almost anticlimactic.

On the bus home, a couple of drug-dealing teenagers started arguing loudly in incomprehensible ghetto-slang...and then Juli gave a derisive snort and started to laugh. I couldn't help but giggle too. In just a few moments, we were both guffawing uncontrollably, holding our sides, gasping for breath, tears rolling down our cheeks.

The teens stopped their arguing to stare at us. We couldn't stop laughing. They got off disgustedly at the next stop, unwilling to share their space with two crazy-girls.

New rule: Don't EVER take the #4 ANYWHERE!

Success!

Juli cruised through her weekend at work without any significant problems! By changing the way she thinks about her anxiety at work and looking at it as an opportunity to desensitize herself to the way her body overreacts ("I'm getting paid to feel nervous!"), she was successful in devising her own version of Cognitive Behavioral Therapy.

I spent Saturday helping Alex's friends Robert and Raine move out of their apartment. While I can't lift heavy furniture, I can (and did) pack a plethora of boxes. When more helpers showed up after noon, I bowed out and went to the movies.

The household is running smoother now. Juli and I are trading off with dinner cooking, I've got everyone trained to do dishes and laundry before both turn into discouraging mountains, and the trash and recycling are being removed on a regular basis. Tyra has a job, Kerne is starting a new job with his old employer this week at higher pay, and Juli is back to work.

This week we are developing an easy and manageable budget system together. The most usurious creditors will be paid off, and they can start to get back on their financial feet again. It's nice to know that all the mistakes Bill and I have made in our fiscal life now have the benefit of helping them avoid the same pitfalls.

My job here is almost done.

Normal Again!

Juli's U/S showed everything to be normal, as well as all her blood tests. It is not Celiac, Crohn's, hepatitis or other liver impairment, or inflammatory bowel disease of any kind. Normal, normal, normal. Personally, I'm thrilled that it's not a brain tumor or any of the above problems. But now she is again beginning to question whether this is "all in her head," a product of anxiety and/or panic.

Having witnessed her illness first-hand last month, my mother-instinct still says that the anxiety and panic come AFTER the vomiting starts, not before. On our trip to LA, there was no behavioral trigger, nothing but happiness and joy at being able to go visit her Gran. She had a little cold coming on, and then suddenly the vomiting started and everything went to hell in a hurry.

She has been faithfully doing the exercises in the anxiety workbooks and following the Cognitive Behavioral Therapy guidelines, which is one of the only proven successful treatments in psychotherapy.

Here's one gem: "Write down all the things you are fearful of."

Well, let's see...I'll start vomiting and won't be able to stop, I'll get horribly dehydrated and will have to go to the hospital, feel miserable for days, and finally be let go, terribly weak and frail, and be tens of thousands of dollars in debt. Then I'll be fine for X amount of time and it will happen again and again.

The Workbook says: "Now that you see your fears written down, don't they seem a little silly? Isn't it unrealistic that any of your fears will actually happen?"

Actually, no. Experience says that it WILL happen, as it has in the past.

So, the CBT isn't working, because the reality is that she is physically sick and the worst case scenario keeps happening to her over and over again. I'd be panicked too. Any reasonable person would, given the situation.

So we continue on the ruling out of all the possible organic causes of her gastric distress. If everything continues to come back as normal, we are left with...abdominal migraine. It is very, very rare in adults, but Juli's Dr. Casabona brought it up as a possibility at her intake interview. It is a diagnosis of exclusion, (every other possible cause has to be checked and ruled-out), but not a hopeless one--it can be treated and even prevented, using beta-blocker and triptan drugs.

So while Juli gets discouraged, her husband Kerne and I become more convinced that an answer will be found soon, and her problem will be able to be fixed or at least controlled. We'll just keep plugging away until we get some answers.

Early Morning at UW

In about an hour, Juli & I will catch the University Express #45 for her ultrasound this morning. Instead of the hour-long, winding about through Ballard, Wallingford and the U District bus ride we took last week, this baby will whisk us to our destination in a mere 18 minutes. I am starting to feel like a mass-transit snob.

Juli is on the schedule to work this weekend, and so far, is looking forward to it. Yesterday, Kerne's sister (and roommate) Tyra got hired for her very first job, at the Convention Center Subway, and starts training on Thursday. Brother Jerry also begins a new job in Anaheim, California next week. While I don't look at this familial microcosm as evidence of a large-scale economic recovery, things are looking up for my personal peeps.

Birthday Girl MaryAnn reports that it was snowing in TN yesterday. Because this is so unbelievable for March 22, she had to post video on her blog to prove it--complete with soundtrack of the spring peepers' cacophony in the background!

And Bill reports that the one-day sea trial of the OBIS revealed some post-shipyard problems, but that they should be on the briny deep and back to normal operations in the near future. He is enjoying his new job as the First Assistant, likes his new crew, and is dealing with the increased paperwork stoically.

Time to zip...

Normal!

Juli and I had an appointment yesterday with her awesome primary doctor. The brain MRI results were back and show only healthy, normal brain inside that skull. We are all very happy, even though it means that the search continues to be one of exclusionary diagnoses.

Tomorrow, Alex is throwing me a birthday bash at his house in West Seattle. Fun, friends, games and food are promised. I will spend the night there, and he has also promised Dim Sum breakfast on Saturday in Chinatown!

This is Juli's last weekend off from work, so we are all looking towards making it possible for her to go back to her job on the 26th. Hopefully with her current medications she will be prepared with a better attitude, less stress, increased stamina, better diet and the more regular sleep schedule she's been on for the last four weeks, to avoid another episode of her illness, whatever is triggering it.

More answers from her blood work and an ultrasound due this week should rule out another collection of possible causes. I am confident that the doctors she has now will eventually figure it out and get her back to good health again.

A Long, Tiring Day At UW Medical Center

Juli and I bussed it to the UW Medical Center for her long-awaited GI consult this morning. History was taken, past test results were poured over, more tests were ordered and blood was drawn. It seems to be a matter of ruling out all the things that haven't been ruled out in the past: Celiac disease, Crohn's disease, IBS, all the different forms of hepatitis, lesions, ulcers, and whatever else they can try to hang their collective hats on. It is still a mystery until proven otherwise.

Jules is now scheduled for a visit to Dr. Casabona tomorrow to discuss her current situation and the results of her brain MRI, an upper GI ultrasound next week, then the neurology consult the following week, then a full upper and lower endoscopy with biopsies in early April.

The day was pretty well shot by the time we got home. We all napped. When Kerne came home from work, everyone went back to bed and napped some more. This medical stuff just wears us all out!

Dishes & Laundry

There is a quote from Shakespeare that goes something like "War and lechery, war and lechery, nothing else holds fashion."

Substitute dishes and laundry for war and lechery, and that pretty much sums up everyday life for everyone. I used to mumble this phrase like a mantra as I slogged through housewifery chores for 30+ years.

The fact that we are dealing with the mundane details of running a household is a blessing, instead of fretting hourly about getting enough fluids into Juli. We have progressed so much that now I grouse about the trivial.

It's Saturday, and the dishes are done; the laundry is going round and round downstairs. Later, Juli and I will take a walk up to the drugstore for a few necessities. There's a big week coming up (MRI results and GI consult on Tuesday), but we'll have clean plates and clean clothes. Strange how the normalcy of such things balance the perception of the potentially traumatic stuff.

MRI

No jewelry, check. No deodorant, check. Bus schedule, check. Ink pen, check.

The test-go-round begins today (at last!)

Then lunch and a nap.

Juli gained another 4 pounds!

Life is good.

Back on Track

Everyone enjoyed their weekend--me in Olympia with my brother's family, Juli and Kerne in Seattle, blessedly free of other people.

Juli continues to improve, gaining another 2 pounds this week. Her MRI is scheduled for tomorrow. My niece Angela's freshman drama project opens tomorrow night, and we hope to attend. Friday night, my acupuncture guy (Mr. Smoldering Incense-Man) is holding a Qigong workshop and has invited both Juli and I to learn relaxation techniques "for increased vitality." Who would pass up such an opportunity? Not us. We are all about increasing vitality these days.

Juli and I have also embarked on a purely menial and practical project--painting the bathroom. I think in times of stress it is advantageous to have something mundane to focus on besides one's internal struggles. Painting fits the bill, and boy, does this bathroom need it!

Good times, good times...

A Thoroughly Disgusting Day

Juli and I were up bright and early (or early and surly, depending on your attitude) to venture forth to the Belltown Health & Social Services office. The website promise was that if one appears before 9 am, one can be assured of a live-person interview. Juli gathered together an impressive stack of financial disclosure documents to augment her previously-submitted online application and we bussed downtown.

Our first impression was positive--a clean, empty waiting room; helpful, English-speaking office staff. When she gave them her SSN, she was told that she needed to be in the office upstairs.

Another universe altogether: A very bad-smelling room flanked by glassed in windows; sixty uncomfortable plastic chairs, facing a ceiling-hung 19" television tuned to The Today Show; thirty or so gangsta-panted men of employable age and apparent physical fitness, sprawled in the chairs; little balls of white fluff, rolling lazily across the sticky linoleum floor, escapees from someone's ripped down jacket? Juli took a number from the dispenser: #39.

Occasionally, the loudspeaker would crackle and blare: "Twenty! Number 20. Look at your tickets, people!" "George Smith to Window Eight!" Behind me, a very stoned couple was giggling uncontrollably. In front of me, a hustler sidled up to the only other woman in the room besides us, with the tempting offer, "I'll give you five dollars to trade your number for mine." In the corner, a very obese rent-a-cop cleaned his nails with a file and looked bored. What looked like a drug deal was going down in another corner. Two young men hissed threats at each other. An old Asian man was popping pills out of a blister pack into a paper bag. I was the only person in the room reading a book, an amazing curiosity by the look of the stares I got. Someone slid up to Juli's chair and asked for her cell phone number. She just stared at him wordlessly until he went away.

Juli was finally called to a window. After about 45 minutes she came out to the waiting room and told me to go get something to eat--she anticipated being there another few hours. She had the white spots on her nose that she gets when she is close to being spectacularly angry.

While I walked out to Subway for a sandwich (and a bottle of milk and package of apple slices for Juli--I was worried about her stomach being empty), Juli was experiencing the following:

Her caseworker (name-tagged: "Ababa"), played hunt-and-peck typing with two fingernails, entering into the computer all the information that Juli had already submitted online four days previously. "How much do you pay in rent?" Ababa inquired. Juli pointed to the correct line in the print-out that Ababa was looking at. Tap-tap-tap-tap, backspace, backspace, tap-tap. "How many people live in your household?" Juli again pointed. Etcetera. Occasionally, Ababa would get up suddenly and disappear for ten minutes. At one point, Juli had to show her how to access information on the internet to prove that Kerne was no longer working at Rite-Aid. And so on.

When we met up again back in the bad-smelling cattle-pen of a reception room, Juli was shaking with fury. One more wait for a call to the EBT window, and we were out of there.

"I am so mad, I can't even think up a funny story about this," Juli hissed as we walked to the bus stop.

We went to Pike Place Market, met up with Christy at the Market Street Grill, and I bought her a piece of grilled salmon to calm her down. When in doubt, feed the baby. The upshot of the four-hour ordeal is that she qualifies for nothing but food stamps. Again, because her husband is being responsible and working his butt off at a $10/hour job, they are not "truly needy." Her medical bills don't matter. Their debts don't matter. The fact that she can't work because she's sick doesn't matter--she has to be disabled for a year before she would be eligible for any help at all from Medicaid. The only upside is that the denial letter will help them apply for charity care at the hospital where all her tests are scheduled.

I am again floored by these so-called "social services." Twenty-seven years ago, pregnant with Juli, I went through this same process. Sitting in a room with all these disgusting people, wondering if I was now, "one of them." Feeling completely degraded by the attitudes of the bureaucrats. Outraged by the people who were obviously gaming the system I had paid into, only to find out that when I needed help, it wasn't available to me because I was still trying to work and be responsible for myself.

Nothing has changed.

Finally, Progress!

Things are starting to move on the Great Appointment Quest. Juli is scheduled for a brain MRI on March 11, followed by an appointment with a GI "Fellow" on March 16. The GI specialist that Dr. Casabona wanted her to see can't get her in until the end of May, so the Fellow may actually be the best route to eventual diagnosis and treatment.

Some of the best doctors I saw at UVA were Fellows. In my experience, they are young, energetic, curious, and uncommonly up-to-date on all the latest studies and research. They are still new enough to the medical world to want to interact with patients. And since this Fellow is working under the supervision of the GI specialist, Juli will have the benefit of two doctors working on finding the cause of her tummy problems. I am relieved for the moment.

We are still working on getting a neurological consult, but at least the MRI will provide some clues or rule-outs with regard to her blackouts and seizure-like symptoms.

Progress at last! It's hard to abandon one's native politeness and become a demanding "squeaky wheel," but apparently, that's what it takes to get taken care of these days. I don't really mind if they are getting her seen because they just don't want another phone call from me.

Whatever it takes, I'll do it.

Clumsy in Seattle

On Saturday, Friend Christy and I made a trek to Target, purveyor of underwear and socks, shampoo and conditioner, chicken broth and noodles. I did the bus thing to West Seattle, where Christy met me as I got off the transport, so as to avoid my seeing her supposedly messy house. (I am convinced that I could beat these youngsters in a home-as-hog-wallow contest hands down, but I have to at least admire their shame in showing me their messes).

We first stopped at the local tacqueria for pre-shopping sustenance. I had a chile relleno burrito to die for, while Christy's carnitas and shrimp tacos looked pretty good too. Plus chips and about eight different salsas to try. Yum.

We did our one-stop shopping and had a nice visit, then took the bus back to the center of West Seattle, where Christy alighted and I continued back into downtown. Once there, I spied my #13 bus a block away, and decided to run for it, with my three Target bags in tow. I made it, the driver stopped and opened the door, but in my enthusiasm and joy at making the bus, I slipped at the top of the bus stairs, hit a patch of water on the floor and did an incredible baseball slide into the aisle. I skinned my left knee as my right leg shot out in front of me, heard the collective GASP of the other passengers, something akin to the sound the audience makes when an Olympic skater misses the triple axel - double toe loop and falls on her ass.

I was fine. Really. I gathered my purchases and my dignity and plopped into a seat. After getting back to the apartment, I started putting away my bounty, leaned over and went into a full-on back spasm. Rats.

For the last two days, I've been sitting around with an ice pack in the waistband of my pants. I can walk (if I "glide"), I can sleep if I don't have to turn over, and I can do most everything except put on my socks and shoes.

But today, I decided to seek assistance. I called around and found an acupuncturist two blocks away from the apartment who would take me at 1 pm. I'm not sure why I decided acupuncture instead of chiropractic, I just did.

This treatment was completely different than my Tennessee acupuncture experiences. After explaining why I was there, I disrobed and hoisted myself into a heated bed with flannel sheets. Mr Acupuncture came in and applied pressure to points in my back, then had me sit up while he placed smoking balls of some kind of herb (yes, burning and smoking) to various places on my back and on my wrists. My job was to tell him when it felt hot, so he could pluck the smoldering material off my skin, stick a needle in and quickly remove it!

When he asked how I felt, the only thing I could think to say was "like an incense holder? Like a pincushion?"

Totally, utterly weird. Let me be the first to say, if I wasn't in pain and this silliness didn't actually work, I wouldn't give these people the time of day. There was a lot of blah-de-blah about adjusting my "Qi" and letting my body heal itself, but the bottom line was that I walked away without pain, and am once again moving like a normal person, without having to wear ice in my pants.

***********

We continue our ongoing efforts to get Juli the appointments she needs. She is gradually eating more and has had no further stomach or anxiety problems. (Fingers crossed here).

All's Quiet

I woke up this morning at 10 am with my face shoomushed into the couch cushions, sweaty hair sticking out like Einstein's. So much for "beauty rest," I may have to immerse my head in a bowl of ice water to get my face to morph back to its normal state.

Juli continues to improve, getting steadily more hydrated, and even taking little bites of solid, banal food like applesauce and plain noodles. I've got her on plenty of electrolyte liquids like Gatorade and Vitamin water, trying to replace some of the nutrients she's lost.

She asked for and received a medical leave of absence from her job yesterday. The idea is to eliminate all the sources of stress on her body and mind, while we work on getting her diagnosed and then fixed. Leaving her job has the added benefit of making her completely destitute, so perhaps now she will qualify for medicaid or some other charity medical care.

It's insane, but if you are working, even part-time, trying to be responsible and pay your bills, you don't qualify for any free medical care at all. While the current political debate rages about health care, the facts on the ground are that if you're a slacker, indigent, unemployed, or lazy, you get a free ride, no questions asked. If you answer "yes" to the first question, "are you working," you're bounced into the "We can get money from this stone" category. If you're struggling to make the rent, trying to work every minute you're not sick, able to pay a little but not a lot, you don't qualify for anything--you pay full price for yourself and a portion for everyone who's getting the free care you don't get. I haven't heard anyone discuss this issue at all. The assumption is that if you're "poor," you get free care and the rest of us have to pay for it. But the definition of "poor" is actually "not working," for whatever reason. Juli and Kerne are working their hearts out, constantly falling behind, never quite getting ahead of the curve. They are by definition, "working," so they are deemed able to pay the thousands of dollars each ER visit costs in inflated dollars.

Juli tells me that according to her past hospital bills in Seattle, every time they hang a bag of saline above her head, it costs $600. A litre bag of normal saline in Alex's retail pharmacy costs less than $3.00--and the politicians wail about the cost of care and the cost of insurance. I am completely flummoxed by the insanity of it all--the specious nature of the argument, the reality out here in the real world, the total lack of rational thought and pragmatic solutions to real problems.

By contrast, in California, our entire ER visit, meds, saline,rooms and doctor care was a flat fee of $800, if we paid it immediately upon discharge. I got out my credit card and paid happily--what a bargain!

So that's my rant this morning. If you too have bought all the hype about how "the truly needy" people get or will get a free ride, do some research--it ain't so. In order for Juli to get the care she needs, she has to become a person she never wanted to become--someone who doesn't even try to pull her own weight, someone who gives up and doesn't go to work, someone who is "helpless" and unemployed. It's not right, but it is what she has to do, according to the insane rules of the game.

What kind of society have we let ourselves become?

Back in Seattle

It seemed like a good idea--get recovering Juli out of town for an adventure, a quick visit to Gran and sunny Southern California, back on Thursday to be ready for work on Friday. Alas, sometimes my brilliant ideas aren't so brilliant.

She was very excited to be going on a mini-vacation on Monday. She spent most of her time resting, talking, laughing. Tuesday, she was still tired, so we took it easy and encouraged her to sleep. My brother Jerry flew in that afternoon for a job interview, so we had good family times that evening. Then, she and I were both up at 3 am because she was suddenly very sick again.

Despite spending most of the early morning in the bathtub, she was vomiting constantly and getting steadily more dehydrated. I put a call into her Seattle doctor's office, and the consensus among the triage nurses was to take her to the local ER for IV fluids.

She didn't want to go, but I still packed her up and took her down to the hospital where she was born 26 years ago. We managed to squeak in just before the lunchtime rush! Outside our curtained cubicle, we could hear the pace pick up from the nurses' conversations:

"I don't have a bed right now, could we just do a quick exam on him in the hall?"

"Call upstairs and see if they can send down 4 more nurses!"

"Yes sir, someone will take care of you just as soon as we can!"

They pumped Juli full of anti-emetics to no avail. A P.A. ordered IVs, but it took almost two hours before the liquid was actually flowing into her. They drew blood. They tried morphine, but as they were pushing it into the tube, I pointed out a large red rash spreading on Juli's chest and neck. The nurse stopped, the rash disappeared. They tried another milligram with the same results, so they had to stop. They put two full doses of Pepsid into her saline. She just kept retching.

My childhood friend Kris Brust is a pulmonary nurse in this hospital and I had her assistant give her a note that Juli and I were in the ER. Kris came down and told all the nurses that we were her "peeps," and they should give us the 5-star treatment. Shortly after Kris' visit, an exam room opened up and we were told that Juli had been triaged as Number 2 out of the next 10 patients. They moved her down the hall, past dozens of people in chairs, wheelchairs and gurneys, all waiting to be seen.

The nurses were astoundingly calm in the face of what I perceived as utter chaos. A young woman, Dr. Gendy, examined and questioned Juli thoroughly and ordered more liquids and meds, including a weird gastric cocktail of Maalox, xylocaine and Donnatol., which Juli actually kept down for about 60 seconds. She managed to hang on to the second dose though, and things started getting better. I had called Juli's Seattle doctor's nurse to let her know what was going on. Even though it was after five, the doctor called me back and wanted to speak to Dr. Gendy. The two doctors consulted on Juli's case, and Dr. Gendy came back with a mutual decision that it was probably gall bladder or ulcer related.

They finally got Juli stabilized and she fell asleep around 7 pm. I was so tired at this point, I scooted my chair up to the head of her bed, rested my head on her mattress and fell asleep for an hour too.

They released her around 9 pm, with meds and instructions to get her home to Seattle as soon as possible. Juli was in no shape to fly by herself, so I quickly booked myself on her flight for this morning. My brother Jerry was also flying back to Seattle, so everybody went to the airport! We got her a wheelchair, got her through security (the full-frisk for her, oh joy!), and got her on the plane.

Another time, I will share my month of TSA "security" stories. For the moment, I'll just say that Juli would have been perfectly justified in barfing on the security personnel. I would have applauded.

The flight was tremendously hard on her, but she made it though the 2 1/2 hours, quietly using all the air-discomfort bags I could round up from nearby seat-backs. I insisted that she have a wheelchair from plane to baggage claim. We met up with Jerry (he was on a different flight) and he drove us to Juli's home so we wouldn't have to battle the train and bus routine.

So, I'm back in Seattle again. This time I plan to see her through the tests her doctor wants her to have, and I think Kerne and I have convinced her that she needs to take a medical leave from her job and concentrate on getting well again. I will reschedule my March doctor appointments for April, and stay as long as I have to.

For the moment, the meds are working, and she's sleeping at last.

What we decided...and ensuing foolishness

Juli and I are flying to California this afternoon. She decided last night to come with me and visit her Gran, get a change of scene and have a mini-vacation.

The anticipation of the trip combined with the fact that last night was her final night of work for the week buoyed her spirits enough to handle everything (including having to call the cops on some unruly teenage guests). She came home in a good mood, without the terrible stress of the previous two mornings.

Then, she couldn't find her required "Government-issued photo I.D." We tore the house apart, looked through every pile of paper, pulled out couch cushions, moved furniture, went through pockets and dresser drawers, all to no avail.

I was on the phone to the airline, concocting a true story of "lost wallet," when Juli returned from the laundry room, waving her card in triumph. It turned out that our little group had conducted our own Comedy of Errors: Kerne, looking for the house bus pass, emptied Juli's jacket pockets and mistakenly put Juli's ID in his pants' pocket. I did the laundry two days ago (and was careful to check the dryer by spinning the tub, finding a loose dollar bill). Juli saved the day by sticking her head inside the dryer, and found it stuck in one of the dryer's veins with another dollar bill. So now she has her ID and bus fare to the train station!

So we will both go to the airport today. She will return on Thursday, after getting a double dose of Mom-and-Gran love, and hopefully a trip to the beach where she can dig her toes in the sand and relax a little.