Monday, October 19, 2009

Down, Up, Down and Back Up

The cramping/bloating symptoms I experienced on the plane ride to Maui worsened with time. Constant diarrhea and passing long strings of mucous convinced me that I once again had pseudomembraneous colitis or a clostridium difficile (c-diff) recurrence. So I started taking the vancomycin I brought with me. However I only had enough for 4 days at 4x daily.

Then we started calling Group Health to clarify whether I could get a prescription at the local Kaiser Permanente clinic. Kaiser is affiliated with GHC. I used that clinic previously in 1998 and only had to pay a GHC copay. So I assumed I could get a vanco prescription called in there. However the GHC consulting nurse knew zip about coverage and even less about c-diff. She wanted me to describe my symptoms (as if I didn't know what I had). I told her I'd been treated for c-diff previously and this was my 4th recurrence. She didn't believe c-diff recurred. DUUUHHHH!!! She suggested I have my doc call the prescription to my Seattle GHC clinic and they would mail it to me in Maui. However, that would take too long. I wouldn't get it soon enough.

So we found a customer service number and inquired about getting vanco from Kaiser. They said we would just pay a GHC copay if my doc called the prescription to the Kaiser pharmacy. So I called my doc's office with the phone number and my Kaiser member number. (I went to the Lahaina Kaiser Clinic to register and discovered I still was a member from my 1998 visit.) Then the adventure took a turn for the worse.

First the Kaiser pharmacy manager said that Hawaii doesn't allow naturopaths to prescribe drugs. (My doc is a trained, licensed physician who specializes in naturopathy, not just a naturopath.) Eventually the pharmacist told us she could get a clinic doc to OK the prescription.

However, when the Kaiser clinic tried to charge GHC for the cost of vanco (which is rather expensive at $500 for a week's supply), the computer was set up to reject prescriptions over a certain amount. The Kaiser pharmacist didn't know about GHC rules (that prescriptions over a certain amount needed voice approval). So she told us we had exceed our GHC prescription allownance. I had feared that would happen sometime with expensive Vanco. However, after further investigation we learned that we just needed a voice override (a real person to okay the prescription). So we wouldn't have to pay more than a copay for a month's worth of vanco.

The next glitch occurred when we went to pick up the prescription at the Kaiser clinic, after we were told it was available there. They could only get 10 days' worth. I thought we might cut our vacation short and fly back to Seattle to get enough vanco to treat the c-diff with full strength vanco (4x daily) for a week and then taper for at least a month to eliminate spores. Obviously a 10 day supply wouldn't give me enough for 2 weeks of full strength treatment followed by a month of taper. However, the clinic pharmacist said the rest of our prescription would arrive the next day.

This morning we went to the clinic to get the rest of the prescription. However, they didn't have that. They spent awhile researching where they could get more vanco, while we worried that we again might have to go home early to continue treatment. Fortunately, they found another source of vanco. So they promised we should get the rest of the prescription tomorrow. We plan to drive to Haleakala (Maui's dead volcano crater) tomorrow. So we'll return to the clinic pharmacy on Thursday morning. I sure hope they actually have my prescription. If they don't, we will miss our chance to change our plane reservations to fly home before the weekend, if we need to return to Seattle to continue vanco treatment.

So I'm supposed to get the rest of that vanco prescription tomorrow (or Thursday), but we've encountered so many glitches in this vancomycin adventure that I'll believe it when I have the vanco in my hand. LOL Meanwhile, the cramping pain and bloating is slowly subsiding. Each day the pain is less. Unfortunately, the longer I take full strength vancomycin, the less good bacteria I have in my intestines. So I have less vitamin K for blood clotting. I bruise VERY easily (just clapping my hands causes bruises). When I cut myself shaving my legs, I bled for over 5 minutes. New bruises appear daily in weird spots. However, bruises are tolerable and reversible. Death from sepsis caused by c-diff damage is irreversible.

The worse part of taking vanco full strength is sticking to a evenly spaced schedule. I just missed my 2nd pill, because my husband with his alarm system watch is not here. I took the pill 45 minutes late. However anytime less than 6 hours apart is good. I'll just do another 5-6 hours from now or 5:45pm. Then my last will be fairly close to bedtime.

I don't take the vanco with food now. I just drink a big glass of water. I get a little nauseas in the morning after going 8 hours w/o vanco, but I just drink ginger tea and I'm fine. This is an expensive but easy drug to take. I just need to taper long enough to kill off all the c-diff spores this time.

Thursday, October 8, 2009

Maui Buns

I'm using a computer at 'Maui Buns' in Lahaina. We can rent computers by the minute in this Lahaina (Maui County, Hawaii) shop. My husband is using this computer for work which he can't do on his blackberry. He wanted to buy a netbook or notebook computer to check into his job during our vacation. However I encouraged him to limit himself to what he can do with his blackberry and a little 'Maui Buns' computer time. Otherwise, he's not really on vacation. Ironically during one of his blackberry conversations, a coworker asked him "What are you doing checking into work? Go to the beach. Do the Hula. You're on vacation!" LOL

However his blackberry work connection entertains him while I'm shopping for clothes at my favorite Maui shop "Serendipity", which features Indonesian, Polynesian and generally lacy dresses, tops and skirts. Luckily I hit a 'buy 3, get 1 free on sale items' promotion at one Lahaina Cannery Mall shop yesterday. I still want to visit their Kihei store, where they send all the garments which don't sell at sales. For those of you familiar with Nordstrom on the mainland, the Kihei Serendipity store is like the Nordstrom RACK. Also Kihei has the best beaches (and boogee board rental shops). So we plan to visit Kihei early next week.

So far, after arrival we checked into our hotel/condo and unpacked. However, we were VERY disappointed to say the least with our condo. The hotel is doing some renovation (NOISE AND DUST) on parts of the building (and rooms). We were told last February that the building's ocean side renovation would be finished. So we upgraded from mountain side (lower price) to an ocean side room, for essentially the same price, because the upgrade consumed the renovation discount. HOWEVER, when we entered our room, we realized the construction continued on the ocean side. The front desk told us that unforseen problems delayed the construction. So the disruption (noise and dust) would continue until February 2010, which meant during our entire stay. We also found a number of mechanical problems with our room. In short, this is one of the worst rooms we've had in this hotel during our 4-5 stays there.

They MIGHT be able to switch us to another room, but said that is unlikely because we booked 3 weeks. I think people who have longer stays (pay more total $$) should get the BEST rooms, not the worst rooms. However, even if something becomes available, the room would have to be spectacular to convince me to pack and move again (esp. after we stocked our room with groceries for breakfasts and lunches). However we would STILL hear the noise.

Even more disappointing was the revelation that we have NO swimming pool or hot tub at our hotel, because of renovation work. GRRRRRRRR!!! We used to enjoy swimming and hot tub after long hot mornings of tennis or walking/shopping in Lahaina. We will NOT return to this hotel, if/when we return to Maui in the future.

Despite my worsening gut symptoms during the plane ride and first day here, I enjoyed shopping, eating dinner out, walking on the beach and splashing in the warm ocean water and attempting to play tennis today. I have a bad bruise on the bottom of one of my toes, which made running after balls difficult. I bruise easily, but I don't know how I acquired an underside of toe bruise.

Tonight we'll dine in a great restaurant by our hotel and watch the sunset. We already talked to the chef (when we made reservations) about our food allergies. He was very grateful that we advised him with allergy alert cards before we made reservations, rather than just walking in and expecting the waiters, etc. to accomodate our allergies. I don't want to chance getting allergy contamination, which would cause me 3-14 days of gut pain depending on the allergy. I already went through 5 months of c-diff related gut pain before I came to Maui.

We also bought tickets for Ulelena, the musical about Maui's history. We've seen that musical 3-4 times before, but we LOVE the show and want to see it again. We need to make reservations for an early dinner (5pm) that night, because the show starts at 6:30pm. However, we're up early every day and go to bed early here. Maui time is 3 hours later than Seattle time. So we still naturally wake up on Seattle time. Also the room has really THIN curtains on the lanai. Other rooms (from our previous stays) had drapes which totally blocked the light. Not so, with this very disappointing room. SIGH

Tomorrow night we will eat out and do the Friday night gallery walk, when all the Lahaina galleries host their artists and offer wine and hors d'veures to visitors. Although I no longer paint, I still appreciate good art (esp. paintings). During the next 2 weeks we plan to go parasailing, swimming in Kihei, do a zipline, travel to 'upcountry' to visit hippy town Paia and eat lunch at 'Mama's Fish House' and a few other favorite activities which I've forgotten. Maybe my toe bruise will heal enought that I can play tennis again. If not, we still have plenty to do.

I may or may not post again, because my husband can do most of his 'work away from work' on his blackberry. However, I'll share more of my Maui vacation (and hopefully LESS of my gut problems) after I return on October 27-8. The plane arrives close to midnight. Then we usually spend most of the next day sleeping and unpacking. So I may not be online again until late that week.

Friday, October 2, 2009

Lost and Found

4 days from now I'll be landing at the Kahului Airport on Maui. I just finished packing almost all my clothes and 2 loaves of gluten/allergy free bread in my suitcase. (I'm still waiting for hand washed lingerie to dry.) I also need to pack vitamins, cosmetics, and other toiletries like shampoo and toothpaste. I'll take some vancomycin and low dose probiotics, but I really hope I don't have to use those. I still experience 'gut' symptoms (fecal urgency, bloating, gas, etc.) but suspect those are caused by the high dose probiotics I'm now taking. I'll skip those on Saturday night, when we attend a local live theater performance, because I don't want to be gassy and add my own sound effects during the play. LOL

Oh yes, the title of this post implies I've lost something. So far I've lost:

(1) the 3 pounds I wanted to lose;
(2) the extra 1/2 inch around my waist (I still have the other half);
(3) my interest in eating unless I'm very hungry;
(4) underarm flab flaps, because daily weight lifting and occasional tennis really firmed my upper arms during the past month or so;
(5) my habit of eating past full (because the high dose probiotics make me super sensitive to 'fullness' at meals);
(6) my crooked smile and 'bite', after spending the past almost 18 months wearing invisiline aligners;
(7) C-diff symptoms (I'll know for sure after I stop taking probiotics);
(8) my overgrown haircut, thanks to a great trim by my stylist (she did so well that I loved my short pixie cut the very first day and still do).
(9) my disordered eating habits (bingeing and purging, from which I extricated myself 6-1/2 months ago);
(10) internet addiction, because I'm more energetic and want to do more than sit in front of this computer.

So what did I find?

(1) EXCITEMENT about going to Maui;
(2) ENERGY to get through my 'to do' list before I leave for Maui;
(3) CONFIDENCE that I can sew again, after completing a tricky rolled serger hem with wooly nylon on the bias cut skirt, which I constructed without pattern directions;
(4) TRUST that my body is going to stay the same size, because I don't binge (which stretches my stomach) and I don't bloat excessively (which stretches my lower abdomen);
(5) RENWED PASSION for sewing and fashion, because my body will stay the same size long enough for me to cut garment fabric, construct the garment and alter that garment to fit my body;
(6) HEALTHY BODY, because I no longer have bad gut bug overgrowth;
(7) OBSESSIVE CLEANLINESS HABITS, because I don't want to consume any more bad bugs from food or anything I touch.

I probably should add that I also lost all the extra time I used to spend on the computer, because I'm busy preparing for my vacation. Beyond packing, I need to harvest the last of the vegies. I'll freeze beans, eat grapes and give away whatever tomatoes I can't eat. I also have an early morning optometrist appointment the morning before we leave. So I'll use appointment time to do a dry run on getting up and out of the house by 8:30am (a real challenge for me LOL). I may not post again on this blog until I get to Maui, where I can use an internet cafe. (I decided against buying a netbook computer, because I need an internet break.)