on Cape

Arrived Wednesday, had ridiculously delicious fried seafood at McMenamy's. Put the screen door in the kitchen door and marginally improved the air flow upstairs -- the house was like a hot box. No air conditioning! Yikes. We all slept down in the basement that night, it was too hot to sleep upstairs.

Thursday was getting settled in, and beach in the afternoon. Friday was spider patrol (downstairs), shopping, laundry, and beach in the afternoon. Saturday I was up early and raked the side yard, and it was nice when my oldest sister came down early and kept me company, and convinced me to use the tarp to drag the leaves into the woods instead of raking them down. Then I did spider patrol (upstairs) and a lot of other straightening-up things because there was a party: a bridal shower for my nephew's fiancee. It was a nice, low-key affair.

Three sisters

My older sister came a little late, after work, but stayed much later. I had great visits with both of them.

Today I was up early with DH -- he went to play with golf with one of my brothers. I decided to make blueberry cake as the rest of the house slept. It was a generally lazy day but in the afternoon we went into town and rented bikes, and hit the Shining Sea bike path.

It was gorgeous.



We just got the bikes for an hour, a sort of trial run -- DS2 has just learned to ride, and DS1 was very reluctant (if not downright negative). Still, we all survived, and for the most part had fun -- I hope we get to do it again.

recapping CT

Absolutely breathtaking -- second place winner
Blue Ascension, Robert Noreika, Rocky Hill, Ct

We just got in from an after-dinner trip for ice cream to Bloom Hill Farm, where a small (small?!) dish of Reese's Madness more than satisfied the chocolate/peanut butter lover in me. We're heading to the Cape tomorrow, and the kids noted that "we've only been there once this year," so of course we scheduled it in.

This has been a pretty busy week, with a special focus - but here it is in a nutshell.

We arrived late Tuesday after a long and uneventful travel day. Perhaps the only thing of note is that National Car Rental service does not automatically include your husband/wife on your rental contract, as most (all?) of the other companies do. If you wish to be listed as a driver, it's an additional $10/day. I wasn't happy to find this out at the counter when we were picking up our car. I didn't yell or anything, but I guess I was sufficiently annoyed ("Well, hon, I guess you're driving, and we're never renting from National again...") that they waived the fee and enrolled us in their Emerald Club for free. I didn't ask for or expect anything and I certainly wasn't making a scene, they just proactively handled it.

Wednesday we had a bit of a late start, not surprising due to jet lag and general inertia, but DH and I took off for our annual trip to Mystic. On the way down we stopped at Saltwater Farm Vineyard, new this year and just delightful.

The hangar/winery and vineyards at Saltwater Farm Vineyard

We found Mystic as lovely as ever, with The Mermaid Inn as welcoming and stuffed full of delicious offerings as we could ever want. This did not prevent us, of course, from going to dinner at the S&P, where we enjoyed the splendid views and even more splendid seafood.

S&P Oyster Co, our dinner spot

The gazebo at The Mermaid Inn

After our three course breakfast in the morning, featuring the world's best granola and absolutely insane pecan-encrusted Challa french toast, we ambled into Mystic to peep at all the beautiful things in The Company of Craftsmen, which is my favorite store in the entire world, and to view the Connecticut Academy of Fine Arts juried art exhibition at the Mystic Arts Center. We love that our annual visit coincides with this exhibition every year -- there are always extraordinary pieces to see.

Just one of the pieces I wish I could've bought

When we finally tore ourselves away from Mystic, we went straight to Maugle Sierra Vineyard, our favorite from last year and still deserving of that spot for their delicious and reasonably priced wines. From there, stops for lunch and shopping and finally back to the in-laws.

Friday was a lazy day until we realized that a huge heat wave was coming in, so we rousted the kids out and climbed Talcott Mountain again. It's a great afternoon hike, and the weather was perfect.

Heublein Tower, looking gorgeous as usual

Friday afternoon I piled (nearly) all the girls into the rental car to go see a matinee of Eclipse... my excuse: it's a cultural thing. How can we criticize it if we haven't seen it? Besides, I enjoyed the humor they injected this time around, and the fight scenes were much better. Friday night everyone went to hear the concert and see the fireworks at Talcott Mountain. The kids loved it, it was the first real fireworks show they had ever seen in person.

Saturday, we moved into full swing for the big 50th Anniversary party. DH's brother and his family had arrived from OH while we were away, so the house was full and we had plenty of help, tucking away all of the travelers' things in various closets and backrooms, dusting, vacuuming, and all the usual flurry of activity that precedes a big event.

The party was wonderful, with a big white tent and tables set up in their gorgeous backyard. The weather was very hot but fortunately the humidity held off, and the party was in the evening so the temps were moderate by then. We all feasted on lobster catered by Clambake Connection and enjoyed seeing all the friends and family. I took very few photos and won't bother posting any that I did take -- just a few of the kids and their uncles playing double ladderball while waiting for the guests to arrive. DH had prepared a really touching speech and delivered it beautifully -- not many dry eyes in the crowd! His parents were really pleased.

After the party, all the girls descended on the kitchen while the guys broke down the tables and chairs outside. There were an extraordinary amount of lobsters left over, along with huge trays of steamers and mussels, corn on the cob, and watermelon. The shellfish was all shelled while the corn and watermelon were cut from their cobs/rinds for easier storage. Many hands made light work.

That was Sunday, and ever since we've been in a bit of a daze. The OH folks headed out Monday, and the rest of us lounged around and went for dinner at DH's brother's place. Today was another low-energy day, reinforced by the nearly 100-degree weather. It was simply too hot to do anything outside. This afternoon we caught a double feature at the Connecticut Science Center's 3D theater, Wild Ocean, which was only slightly preachy, and Dinosaurs Alive!, a really neat overview of current work in paleontology, with nifty CGI dinosaurs. We were surprised to see feathered velociraptors and coelophysus, along with nimble postosuchus, which Walking with Dinosaurs had depicted as clumsy and slow. It's really interesting how much the thinking has changed in just a decade.

Tomorrow: packing, and driving to the Cape, and cooler temperatures, but not so cool that we can't go to the beach!

things work out

I set myself a task of "getting the word out" about ThyCa East Valley while the kids spent their mornings at school. I admit to some procrastination about it, but finally this week I put together folders with samples of the patient pamphlets we provide, the Low Iodine diet guidelines, the resource list, plus ThyCa cards and several of my own business cards. I used MapQuest, Google Maps, and my own insurance company's list of endocrinologists in the East Valley, and mapped out a route that took me to all their offices so I could drop off the packet and ask them to let their patients know we exist.

The first day's driving around taught me I need to do due diligence before I start driving around. Some doctors have moved their practices, one seems to have completely evaporated -- and two addresses I accidentally put in Chandler when they were really in Mesa, which didn't help.

Eventually I got around to everyone that's still here, leaving Banner Baywood, the farthest out, for Friday. Banner Desert has a Cancer Center, and I met the ACS rep who works there -- she was delighted to get the information. I learned in one of my (long) drives that Banner Gateway doesn't have a cancer center - yet -- they're building one in partnership with my old friends, M. D. Anderson, that will open in Fall 2011. So before heading out to Banner Baywood, I checked it out on the web, which really gave me the impression that they had cancer services similar to those at Banner Desert.

The reality is, there is no Cancer Center nor are there Cancer Navigators or any other care providers specifically dedicated to cancer support at Banner Baywood, or if there are, no one at Banner Baywood knows they exist, including the people at two different information desks and in the HR department. I ended up leaving my information for the oncology data services guy, who for some reason was out of his office, but the staff that was there thought he was the closest to what I was looking for.

That was frustrating, and the frustration continued when I tried to locate the doctors that both the online directories and my insurance insisted had practices and offices at Banner Baywood: one doesn't exist, one is a cardiologist, who for some reason is showing up in various directories as an endocrinologist.

In all, I spent more than a half an hour there being bounced from office to office only to find out that there really wasn't anyone there for whom my information was in any way useful.

Except...

The signage at the hospital is not as clear as some I have been in. The first door I entered, I thought it was the main entrance, but it was in fact outpatient registration. The woman at the desk referred me to another woman in the office around the corner; she was helpful, calling HR to see if they had any information that could help me. As she spoke on the phone, I noticed she had a tiny little scar below her throat, from a fairly recent surgery. After I thanked her, I asked her if she didn't mind, would she tell me about her scar?

She had thyroid cancer, and was about to go for RAI. She had never heard of ThyCa, and never talked to anyone about what to expect from her disease or how to manage it. I gave her my card and encouraged her to check out the ThyCa website and to call me if she had any questions or just wanted to talk. She took my card and placed it very carefully in her wallet.

I ask, "What are the odds?" but I don't think odds comes into it, with something like this. There was no reason for me to walk in that particular door -- it was, in fact, a mistake. There was no real reason for the first woman at the desk to refer me to the second woman, either -- she should have sent me to the main information desk, which was one entrance over. But I did go in that door, and I was referred to the second woman, and I noticed her scar, and gave her my card.

An hour on the road, another 30+ minutes wandering around, redeemed.

no.

Amitriptyline helped the headache, but put me in a permanently pissed-off state. Plus, my throat is absolutely killing me -- the drug intensified my relatively mild dry mouth problems to the point where I have no saliva to swallow. Ick.

Very pleased, though, with the neuro's office. I called at 10AM and explained the situation, got a call back at 1PM with orders to discontinue, and a new prescription was phoned in -- we're giving Depakote ER a try, we'll see how that goes.

as usual

Every test came back normal. That's good news, of course, but frustrating since I don't feel well.

Today is my first day on amitriptyline. It's supposed to prevent the headaches, which the neuro is convinced are migraines. It's main use is as an anti-depressant, but off-label use as a migraine preventive goes back at least 10 years.

Main side effects: drowsiness and dry mouth -- check and check. I took it at about 10PM last night, hoping to abate morning drowsiness. I got up with the kids at 6:30 and got them off to school, and promptly fell asleep on the couch from 8:30 to 10. It didn't really help that much, I still feel background fatigue. I'm also grouchy but that could just be because I'm irritated that there's nothing "officially" wrong and that doesn't align with what I'm experiencing.

Apparently it takes about a month for the amitriptyline to actually do anything regarding preventing the headache. We'll see if I last that long with it.

neuro tomorrow

Later today, actually.

If it were something really serious, they would have contacted me already.

That's my theory and I'm sticking with it.

(Still no word from the gyn, but working on the same theory there, too.)

Agritopia

Lunch at Joe's Farm Grill today -- absolutely fantastic, again, and now I've figured out how to order so we only get twice as much food as we need (it's unavoidable), as opposed to 3x.

Life is like a bag o' peaches? If only.

After lunch, went over to the Farm Stand and bought some peaches. They don't look like much, but they are absolutely incredible. The best peaches I've had in years, possibly ever.

But we didn't know about that until after dinner. To pay for the peaches, I needed some smaller bills -- it's honor system, and I owed $4 but all I had were 5s, 10s, and 20s. I went into the Coffee Shop directly across the courtyard, appreciating very much the gorgeous sky blue scooter perched in the first "scooter parking only" slot right by the door.

First thing, when you open the door, is the incredible coffee aroma, of course. It amazes me you can't buy a coffee-scented candle. It's one of the most delightful scents. I just wanted to stand there and inhale for a while, but the kids were waiting, so I went up to the counter to get some change -- and that's when I saw the cupcakes. Insanely beautiful cupcakes -- I knew we couldn't leave without trying them.

I got my change, paid for the peaches, and told the kids they had to see these cupcakes, and they could get one if they wanted. DS1 chose the coconut, which resembled a pink snowball only made with real coconut and some kind of edible sugar glitter; DD chose the "vanilla glam", a vanilla cupcake with gorgeous pink frosting and the same glitter; DS2 chose the "cookie dough", which tasted, amazingly, like cookie dough with some cream cheese/buttercream frosting, sprinkled with mini chocolate chips. These cupcakes had the unique property of tasting even better than they looked, and they looked fantastic. They had quite possibly the most delicious frosting I've ever tasted. I think it had marzipan in it.

We had leftovers from lunch for dinner.

amusing & not so amusing

Things heard at the gynecologists today:

"Well, your uterus is still gone."

"I'm not feeling anything, but I'm sending you for an ultrasound to make sure there's no mass there..."

???

"... your symptoms are the kind of thing that could be caused by a mass."

Undecided on the use of the euphemism.

Not looking forward to chugging 44 ounces of water tomorrow, either.

a list

* Relpax helped yesterday, but I suspect getting more than 5 hours of sleep helped more, today.

* Brain mri: not a bad experience at all. The longest pass was only 5 minutes, which is quite tolerable. Plus, there was a constant gentle flow of cool air through the machine so I didn't feel enclosed at all. If it weren't for the ticking, humming, and thumping, it would've been restful. About 30 minutes before the contrast, 3 passes afterward, about 45 minutes total. Results next Wednesday.

* First meeting today was very productive, planning a thyroid cancer panel at the Cancer Center at Chandler Regional Medical Center, Thursday, Sept 9, from 6-8pm.

* Got a 98% on the final I took yesterday, must wrap up my other class... kids last day is tomorrow, they will be done before I will, but I should be able to finish everything up on/before Friday.

* The checkout clerk at the grocery store called me "Miss".... something about the tank top + sundress I was wearing, or maybe she just wasn't paying attention? Or maybe she knows women my age get a kick out of it...

* Aren't cherries supposed to be good for arthritis? I'm eating way too many... they are irresistible.



Tomorrow, much to do, again -- another appointment, DS1's Golden Scholar presentation, last-day-of-school lunch at Joe's Farm Grill, trying to nail down that schoolwork...

nothing ventured --

Trying the Relpax today. For the last 3 days the headache has wobbled at around a 2-3 on the 10-point pain scale, but today it ratcheted up -- I may have found my trigger: stress -- suffice it to say, extended family worries, pending exams, and a bit of fussing with the kids this morning are not a good combination, so at 9AM I took my first pill. Now, an hour and a half later, it does feel somewhat better, although not all gone.

I can take one more at 11AM, and probably will. I feel just a little like I'm wrapped in cotton wool, sort of muffled, but not sleepy or dizzy or nauseated or any of the other horrid side effects listed.

So far.

I question the wisdom of taking a final while experimenting with the new medication, but at this point I don't really feel as if I have much choice.

juggling

Headache (mid-March), rheumatoid arthritis (April 6), UTI/UTI-like symptoms (5/3)

Seems like longer for the UTI stuff, glad I checked the dates.

a long month

Continuing my impersonation of a healthy person, even while all this stupid health stuff continues in the background:

- I had a wonderful student teaching experience for my Adolescent Behavior class. Really, it could not have been better. It was a little crazy, since I took on a lot more responsibility than was required for the class, but my mentor teacher was very encouraging and I valued the opportunity to work with her and get the benefit of her experience for as long as was feasible. So a 20 hour requirement turned into nearly 4 weeks, and instead of 2 lessons I taught an entire (small) unit, and instead of teaching just 2 hours I taught 6 classes a day, 7 days of instruction. Loved it, loved confirming that yes, I can handle it physically. Kind of annoyed that it has taken me so long to get here, but at least I'm here.

In other news, the kids all passed their karate tests and have moved up to purple belts, and they totally aced their Arizona Study Program piano tests, with Superior grades on their performance exams and nearly flawless written theory test scores. DD and DS1 are both recognized at their schools as Golden Scholars, and DD's band concert was terrific. DS2 had a research project on Ferdinand Magellan, and DD had one on Betsy Ross which required a costume... which induced me to get out the sewing machine. Been a long time since I sewed from a pattern, but the little hat, scarf, and apron all came out great and she looked terrific.

On the medical front:
- came down with a UTI on my first day of actual teaching. Instructive, as this is something that's common for teachers. Schedules are very tight, and we don't get to go to the bathroom whenever we want or need to... which can lead to things like UTIs. Obviously I'm going to have to watch that. I actually went to the mini-clinic at CVS over the weekend while the van's tires were being rotated, but then I went back on Tuesday to my regular office for a follow-up, because I'm still feeling off and I'm having flank pain. I've had flank pain before, I've even had PT for flank pain before, but the exercises aren't helping. The PA assured me I don't have a kidney infection, but I'd feel a lot better if the flank pain and other symptoms just went away. The PA seemed sure it was muscle pain, but I haven't been doing anything that would stress those muscles, so I don't know. And even if teaching and being at school was messing me up (which it never did before when I was subbing), I've been home now since Tuesday and it's no better. It's probably just my fibromyalgia, acting up for no reason.

- the hip is a lot better, the bursitis is gone, the muscle/tendon thing is still there but seems to be getting better. I honestly don't know. It's a range of motion thing and I can certainly live with it. I'm just grateful that the bursitis has resolved.

- the RA is still kicking my butt on a daily basis. Hands are the worst. Arthrotec 75 2x/day is helping quite a bit, particularly with the gastroparesis, but I'm still having pain every day. I tried the pain meds (Ultram) one day and they did nothing, but I only took one and I suppose I should try two, as per the prescription. I didn't feel loopy when I took it but I did have a bought of dizziness the next morning -- unrelated? Don't know, but do know that dizziness is a known side effect. Also have Arava, which I'm not taking, for several reasons including I work in schools so being immuno-suppressed isn't the best idea, and that it takes about 3 months to start working, and when you stop taking it, it circulates in your systems for months or years afterwards. I'm not sure what the upside is supposed to be, but for now I'm holding off on it.

- The left eye-headache thing: saw the TMJ doc, and he thought it was muscle tension related and gave me trigger point injections in my neck. These did nothing (and apparently will cost me $358, as opposed to the $144 quoted at the office, but I don't have a bill in hand yet, so we'll see). He stressed my PT exercises which I am doing -- no effect. Dr. O, the ENT, ordered a sinus CT scan, it's completely clean, and then did a bunch of exams in the office, exhausting his expertise. He's thinking cranial nerve involvement, and referred me to a neurologist. Saw her this morning, she was very thorough, and, as expected, ordered the MRI. She thinks it's probably migraines even though they are not manifesting like typical migraines, but we need the MRI to rule out lesions. Exam and symptoms rule out a problem with the optic nerves, and the sinuses, inner ear, and muscle tension have all been ruled out also.

She gave me Relpax to try for the pain when it's bad, like now (about a 5) -- it never goes away completely, it will fade to a 2 (more like insistent pressure than actual pain, but I notice it). I can't figure out what makes it worse or better, which is annoying. If I knew what was causing it, I'd stop doing that!

DH started MediFast this week. He doesn't need to lose much weight at all, really, but he needs to change his relationship with food, and that's not something I can do for him. He'll be working with these folks for a year. I think it will help, and I'm doing what I can to support him. In the beginning things are rather stringent, so I made him a stir-fry last night of garlic, mushrooms, broccoli and spinach, which he really enjoyed.

I'm still slogging through my two classes -- not much left to do now but I asked for and got a 1 week extension. If I were feeling better I could have pushed and finished everything by tomorrow -- maybe. Far better to take the extra week and not stress so much about it.

DD and DS1 will be taking classes in June, math for DD and Latin 1 for DS1 -- it's only Monday - Thursday from 8-12, and it will give them something to do, so I'm not terribly traumatized by it. DD is a bit annoyed, but she'll survive. DS1 seems not to care at all, although he is excited about starting Chandler Prep in August.

By the time vacation gets here, we will have well and truly earned it.

over to the Dark Side

Migrating to a new platform is going to take a while, and it seems as if the first step to do that would be converting my ftp-published blog to a Blogger-published blog anyways, so here I am.

How odd. We'll see how it goes.

status

Marginally better.

I had to over-hydrate myself this morning for a blood draw (6 tubes - whoa), and found my eyes didn't burn so much. Of course, it's cloudy and cool today, and the pollen count has fallen from its insane peak, so that's probably helping, too. It's not as if my eyes aren't dry, they're just not completely parched and painful.

My RA was only bad in waves today, or maybe because I was busy I was just able to ignore it better. I do hate it when my hands throb.

My hip: meh. My left piriformis is killing me, in spite of fairly scrupulous efforts to never, ever twist my hips. I catch myself crossing my legs occasionally, and immediately uncross them. The muscle (and it's only the one) hurts worse than the joint, most of the time. I still have very limited range of motion. This is the first time I've had something happen where it really is affecting my quality of life other than just overlaying everything with a haze of pain. I really miss being able to sit cross-legged! There's no way I could do that now with the hip the way it is. Still haven't found a good way to stretch the piriformis with my limited mobility. BioFreeze.

Sinus pain/pressure: much better today -- yesterday I thought it would about kill me, it was a throbbing 7 most of the day, but that's because I didn't get nearly enough sleep the night before. I got a good 7 hours last night and I'm sure that helped a lot. Today, only mild pressure and short-lived pain reaching only a 3 or a 4. I'm tired now, and I can feel it more. I discussed it with DH, and we've both decided it's not brain metastases (heh), but it could be cluster headaches. Hope it's not, but I do have a history of migraines.

Energy level was OK today, I didn't have to work so hard to push through the fatigue. Mentally I feel quite sharp even though I feel physically exhausted, which is OK -- I hate it when the brain fog sets in, at least now I can still think.

I have to look at the calendar and figure out when everything started so I know what to say when I see Dr. C, the TMJ/headache specialist on Wednesday. This has certainly been going on long enough.

even the tiny green ones are fuzzy

Hope springs eternal.

barely an inch long

No, not olives!

If they survive the heat of the summer and we get enough of a cold snap in the fall, we might just have a little peach crop this year.

quite a spell

I've been taking Arthrotec since Saturday, and haven't really noticed much improvement. Sometimes my hands are better, but they still bother me throughout the day. Although they don't appear as swollen, they still hurt. Some days (yesterday, for example), my eyes are fine; this morning, I could barely open them, they were so dry. That's what I get for neglecting to put drops in before I went to sleep. As far as I can tell, that problem is unrelated to how well hydrated I am, the pollen count, or cosmetics.

The hip is a problem. Tuesday's modified workout (no bike, no running) seemed to help everything else and not aggravate the hip. I worked out somewhat less carefully yesterday, hoping for more improvement, only to be rewarded with an excruciatingly painful hip. Tylenol, ice, and Lidocaine patches are barely taking the edge off. Sitting, standing, and lying down are equally painful. At the same time, the muscle problems that usually accompany my bad hip are not bad at all -- I think the Arthrotec is helping there.

In other news, the hip x-ray was normal. I don't think bursitis shows up on x-rays. I'm relieved that there's no bone damage or bone metastases, although it would be weird if there were, considering how suddenly this all came on.

My theory is that I just overdid it in my preparations for Easter, when I was very active and on my feet for two very long days. My symptoms didn't kick in right away -- Easter was a great day, it was really not until Tuesday that I started feeling miserable -- but that's the only "event" I can point to that might have triggered the flare. OTOH, I have vacuumed the entire house before without these horrible effects, so maybe that's not it.

The Arthrotec is definitely helping my neck, although I've a muscle in my left shoulder that feels rock-like most of the time, no matter how much I stretch and massage it. It also seems to be helping my stomach, at least on the gastroparesis front, although it does make me feel pukey for a couple of hours after I take it, even taking it with food. That side effect is supposed to diminish after a week -- here's hoping.

The blocked/congested left sinus situation persists; the Arthrotec is taking the edge off that, too. I'm wearing my speaking splint on the theory that it's TMJ-related, but so far it hasn't made any difference at all.

The purpose of this is not to whine, the purpose is to keep track of my various symptoms during this active treatment phase so I can see what, if anything, is working. Here's the whining part: I'm not sleeping well (no surprise), and I still haven't heard about either my practicum placement or my job application.

On the positive side, RE classes are swiftly drawing to a close, and DS2 will receive his sacraments April 24. I made the most awesome "donut muffins", cinnamon butter puffs from my beloved The Breakfast Book. And I've backed up my entire website in preparation for porting this blog to another platform. I've been taking naps in the morning to make up my sleep deficit, and I feel very lucky that I'm able to do that. I have only 2 lessons left in one of my courses, and 4 in the other (of course there's also that practicum to get out of the way.) School will be out before we know it. I'm really looking forward to summer.

staying on top of things

The shooting pains in my hip this morning convinced me to call my rheumatologist. I had perfect timing in calling, because they just had a cancellation so I'm getting to see her tomorrow afternoon. That's practically a miracle. It has been quite a while since I've been in (12/08), so they've sent me a new patient information packet to fill out -- I'm not looking forward to doing the pain inventory right now, mostly because it's pretty bad. I was trying to scale the hip pain and decided on a 6 (1-10 pain scale), which for me, means that it was so bad that I couldn't sit still, I kept moving trying to find a position that would relieve it. Nothing worked, although it did calm down a bit (the ibuprofen takes the edge off), so now it's about a 4, constantly calling attention to itself.

My hands are bothering me, too, to the point I haven't even been putting my rings on at all, although I have them on now -- but I can feel them, they feel heavy around my finger, and the hands themselves are at least a 4, too. Sheesh.

At least today my neck is not too bad... it occurred to me that the pain in my sinus might be TMJ-related, although I have absolutely no TMJ-related symptoms, my jaw feels fine, no clicking or anything like that. Plus I am religious about posture these days, especially the set of my shoulders, because my neck injury has been flaring up a bit.

Anyway: Day 4 of the Z-pack and while the sinus pain is somewhat reduced, at times it hurts just as much as ever, regardless of the ibuprofen status. I'm not holding out much hope for that Z-pack, but I am considering calling Dr. C and getting an opinion from him. I need to go dig out my speaking splint and start wearing it, and see if it makes any difference, and I'll continue with my neck/shoulder exercises too -- not that they are helping, but they're certainly not hurting.

My stomach is 'eh' these days. Easter was ridiculous, how much I ate -- and drank (mimosas!) -- but I didn't feel sick at all. I've been good since then, although not totally low carb (6 jellybeans last night, a couple of tiny lemon squares in the afternoon) -- but not crazy eating, either. I'm not paying any attention to my weight since my hands are so swollen, I have no way to evaluate how accurate it is, but it is nearly as high as it was when I started my "diet". Some days I feel normal, like I can eat anything I want and be fine, other days I feel as if nothing's working properly and I should stick with a liquid diet. (On that note, the Gold Standard vanilla ice cream flavor whey + cocoa + DaVinci sf dark cherry syrup = insane deliciousness.) I actually bought gum today, in the hope that chewing some would help my stomach wake up while I was out doing errands today.

I applied for my dream job on 3/31, still haven't heard anything. Still haven't heard about my practicum placement, either. I don't like waiting.

latest ows

A couple of things I need to keep track of...

I have an eye/sinus thing that's well into its third week. I let it go for a while but then it became painful -- I thought it was just a temporarily blocked tear duct, but then it moved into my face and is not fun. I broke down and went to the doctor last week, he started me on anti-biotic eye drops on the theory that whatever it is started in the eye. Instructions were to give a good 5 days, and if it wasn't better, to start the Z-pack. I started the Z-pack yesterday. No appreciable relief yet. My eyes are very dry and gritty -- I'm using the Refresh tears more often than I ever have before, but the eyes still burn all the time.

Coincidentally I had a follow-up with my ENT today, who anesthetized my nose and then scoped it (very cool gadget, that) and didn't see a thing indicating any kind of infection. No swelling, inflammation, discharge, nothing. He did say there could be a sub-clinical infection in the sinus which he wouldn't be able to see with the scope, so we should give the Z-pack a good 10 days to work -- and if it's not better by than, he'll send me for a CT scan.

I don't want a CT scan, for many reasons. First of all, whenever I hear the word "scan" my brain automatically goes directly to "metastases", which is absurd, but I've been living with cancer for five and a half years now, and that's just the way my brain works. Second, CTs are expensive, and third, it probably won't show anything. The ENT mentioned the possibility that it could be a nerve problem. On a certain level I'm pretty happy that everything looks OK up inside my head (at least the parts the doctor could see - nasal passages, ears, throat, heck even my eyes look fine), while at the same time I'm wishing this was just a simple, treatable sinus infection. It's not, and I know it's not, because I've had plenty of sinus infections in my day, and I can't recall a single one feeling like this and not responding at all to Sudafed, mucinex, sinus rinses and ibuprofen. All that OTC stuff gets a handle on congestion, drainage, and inflammation, and helps clear out the sinuses so they can heal -- and none of it has helped a bit this time.

So I'll just wait and see. Perhaps whatever this is related to this:

I'm in a wicked flare the past couple of days. It may have started before Easter but I was too busy to pay it much attention, but I'm hurting everywhere now, even on a steady diet of ibuprofen. I'm just keeping my rings off because my hands are swollen and I don't want them to get stuck. My left hip is particularly bad -- it has been bothering me for a few weeks now with limited range of motion, but nothing too horrible. I figured I'd pulled it working out and it would get better, but it hasn't. Pain in the joint has been increasing, which sucks, and now all the muscles in my butt/hip on the left side are all seized up. Which came first, the muscles seizing up or the joint pain? They are definitely related. I'm doing my best not to torque my hips around, which means sleeping with a pillow between my knees, never crossing my legs, and not curling up in a chair or on the couch or anywhere -- I can't tuck my feet under me or sit cross-legged and man, is that annoying and tiring and worst of all, it's not helping.

Stretching: the ones I can do aren't helping, and the ones I want to do I can't do because of that range-of-motion problem I mentioned. Copious amounts of Biofreeze gel help. I spoke to the 24-hour on call nurse at Blue Cross and she recommended I see the rheumatologist, but I kind of want to see the sinus thing through first. (Now I sound like my mother, who doesn't want to multi-task health issues.) Perhaps I'll call tomorrow.

Sleeping OK. Feeling a bit pukey from the antibiotics (I think, it feels different from the gastroparesis pukiness. No actual puking, though, as has been true for the last ~20 years.) Ate way too many sweets (too much in general) over Easter -- which may have contributed to the flare -- and am now back to eating sensibly. Was hoping that would have a more immediate impact on my general condition, but so far, no such luck.

diet, gastroparesis, etc

March 16th: cooked a bunch of new stuff, ate way too much, felt sick all night.
March 17th: diet!

Wait, how could I start a diet on St. Patrick's Day?

Honestly, it wasn't a problem. I didn't want to eat anything on St. Patrick's Day. I felt so miserable I was compelled to do something. A huge internet search led me to a new gastroparesis blog with some good suggestions.

Since the 17th, I've had protein shakes for breakfast and lunch, and then whatever we're having for dinner, although I've been watching portions, especially carbs. I decided to do this for two reasons: first, because I felt so very sick on the night of the 16th. It really upset me that just eating what for many people would be a normal dinner would make me so sick. Second, on the morning of the 17th, I stepped on the scale and looked at a number I hadn't seen since my pregnancy days. Clearly I had to do something to get things under control. I wasn't paying attention to what, when, or how much I was eating, and in spite of occasional bouts of misery, I had been gaining weight. A pound here or there every three or four months doesn't seem like much, but they were creeping up.

My gastroparesis seems to be responding well to this regimen. Not having to digest solid food for most of the day seems to make handling dinner not as much of a problem, although I am nibbling Trader Joe's candied ginger or Ginger Chews nearly every evening. The ginger was a piece of advice I picked up from Crystal's Living with Gastroparesis blog (linked above), and it has really helped.

So my stomach's doing better and I'm back to the weight on my driver's license, down 9 pounds since the 17th. It has been quite a while since that was true. (I'm not sure it was true on the day I got the license.) I'd like to lose a little more for bathing suit season (here's hoping we have some beach weather this summer), but mostly I'm happy I don't feel like puking all the time. Now that I'm back down to what is technically my "normal" weight, I'm curious to see what happens. Since I've cut back my carbs my appetite is pretty much gone -- but at the same time, I don't get that horrid nausea I used to get first thing in the morning when my stomach was empty.

Interestingly, I seem to have the worst gastroparesis symptoms when I eat more starches. I'm still taking digestive enzymes and omeprazole (Prilosec acid-reducer) twice a day. I tried peppermint oil but that seemed to make my reflux worse (a noted side effect), and I experimented with Betain to see if my problem was insufficient acid as opposed to too much, and that was definitely not the case. I've ordered some Iberogast after reading what Crystal had to say about it, it will be interesting to see if it helps when it arrives.

You'd think after nearly two weeks I'd be sick of the shakes, but I try to vary them. I'm also like them because they are fast and easy, and they don't make me sick. That last is a huge plus, and explains a lot of my fondness for them. Also, the Gold Standard Whey is a very good tasting whey protein shake mix, with a pleasant mouth feel (some leave the inside of your mouth feeling like it's coated with plastic.) Some shake recipes:
- coffee instead of water, sprinkle with cinnamon
- coffee, add a scoop of cocoa powder for a mocha
- add a scoop of cocoa powder and a tablespoon or so of peanut butter
- add a scoop of cocoa powder and some sugar free black cherry syrup (I have been corrupted by Starbuck's new Black Cherry Mocha. It's insanely delicious, I just wish they had a no-sugar option.)
- orange Powerade Zero instead of water to make a creamsicle shake

If you use cocoa powder or peanut butter, you have to leave it on the blender for a while. I usually throw in a couple of ice cubes and let it blend while I'm puttering around in the kitchen -- a good 3 or 4 minutes, at least. It gets nice and frothy, which makes it easier for me to drink. I'm thinking of trying cream cheese to see if I can get a cheesecake flavor.

signs of Spring

The neighborhood turtle comes out to bask in the warm afternoon sun.




And (finally!) blossoms appear on my peach tree.