Monday, January 28, 2008

Torchwood 2.1: Kiss Kiss, Bang Bang

When Torchwood's second season debut opens with a cliché-ridden car chase, you can't help but wonder if the show runners are trying too hard. Between-seasons PR promised more team spirit and more fun; what I'm hoping for is a settled sense of, and respect for, the target audience and a lot more consistency with the characterization. "Kiss Kiss, Bang Bang" easily transcends its ridiculous lead-off, and sets the tone for a new season of less bickering, more questions, some answers, and a good mix of otherworldly technology, aliens, sex, and action. It works.

Click here to read the rest at The House Next Door.

Saturday, January 26, 2008


I'm suffering from bad fit right now, only not clothes: me. Round peg, square hole, that sort of thing.

There are a bunch of things I want to do, but am not doing. Time constraints do not figure in here. The only constraints are self-imposed. I don't like doing some things, like writing, unless I'm by myself and have psychological room to work. Psychological room, aka "alone time" is in short supply these days.

Since I can't (and don't want to) change the circumstances, I have to change myself. I have to figure out a way to trim some resistance here and some inertia there and just get over it and do the work.

Monday, January 21, 2008

fog has lifted

The PA at my endocrinologist's office listened patiently to my long spiel about the gastroparesis and other hypo symptoms, remarked that I'm technically hyperthyroid, and then said it would be OK for me to increase my Cytomel by 2.5mcg/day.

I don't care if it's just placebo effect, but I'm feeling much better.

My sleeping is a little screwed up, but I don't really care, I'm feeling that much better. I woke up without feeling as if I had been hit by a truck for the first time in long memory. That was great. Also, when I wake up, I'm awake, not wandering around in a daze for an hour.

My limbs still feel leaden from time to time, but overall, it's just so much better I can't even believe it. So far no palpitations or other weirdness, although I did have a few seconds of eye-twitch Friday evening, something I'd not had in a long time, but haven't noticed since.

Inspired by this improvement, or perhaps just insane, I've gone back on the Prilosec because it really does the best job at acid control. So far I'm not having side effects from it, but we'll see if they occur over time. It may just be that I have to take a break for a few days every so often. I can handle that.

I'm hoping that this meds increase straightens me out, or at least gets me back to where I was at this time last year. Cautious optimism it is. Now I have enough energy to invest in hope.

Friday, January 18, 2008

what I'm wondering

People who don't have chronic diseases, who don't have to take medications or they'll die, who don't have to deal with one bodily system after another going wonky on them -- what's that like?

What's it like not having to be careful how you move or lift or bend, so that shooting pains don't run up and down various limbs? What's it like being able to eat without wondering how sick it's going to make you feel later? What's it like being able to get up in the morning -- or let your stomach get empty at other times during the day -- without feeling like you're going to puke?

What's it like not having to take two dozens pills everyday, just to keep the cacophony down below 4 on the pain scale? What's it like being able to talk and swallow without feeling like there's something stuck in your throat? What's it like getting up in the morning without feeling as if you've been hit by a truck? What's it like to not be freezing all the time, and to not have skin so dry that your digits crack?

I don't remember what it's like. The hit-by-a-truck thing started in my early 20s, along with a whole alphabet of stuff that doesn't really bother me now (PCOS, IBS, TMD) but that made my college years miserable. (Well, the TMD reappeared but now I wear a splint to keep it under control.) That stuff is nothing compared to recurrent thyroid cancer and the current gastroparesis/reflux combination nightmare.

I'm thinking it must be awesome. Like, if you're feeling tired, you could sleep and when you wake up, you'd feel better, not just less sleepy.

I'm jealous, I admit it. On a daily basis, I literally ignore any RA- or fibromyalgia-related twinges, because they rarely register as anything more than twinges. The things that are bothering me the most right now are the poorly-controlled reflux and the resultant sore and lumpy-feeling throat. (I am perversely thrilled that the "rapid transit" problem I've been dealing with for the past few years has resolved, even though the resolution -- discontinuing Prilosec -- is contributing to the uncontrolled acid situation.)

I'm not consciously aware of it, but I realize that I expend a lot of energy on ignoring or managing these symptoms. Some days I just get tired of it, even though it's not stopping me from doing anything I want to do. OK, that's not really true, I've got a slight near-depression thing going on that's making everything a struggle, even though I am accomplishing things at a decent pace. I should be happier about those accomplishments, but it's like there's a gray pall cast over everything that's taking the glow off.

I really, really hope I can get my meds adjusted tomorrow. I think it could help a lot. I'm dreading the appointment because the last one did not go well and I don't think tomorrow's will, either. But I need help and I'm not sure where else to go for it, if my endo boots me to the curb for having the temerity to suggest, again, that she might consider mailing lab results to her patients instead of forcing them to schedule follow-up appointments.

No matter what happens it will be a relief to get the appointment over with, and to know where I stand with the endo. And no matter that this post makes it sound as if I'm barely functioning, nothing could be farther from the truth: I'm doing well enough that I can do a very good imitation of a healthy person, or a generally healthy person with a really sore throat. My gastroparesis isn't nearly as bad as I know it could be, and for that I'm thankful. I won't say "never been better" because that's clearly not true, but I'm OK. Really, I am.

Thursday, January 17, 2008

busy week

... so far.

Worked Monday, then taught my RE class as usual; killer sore throat by the end of the day.

Tuesday (was that just yesterday?) errands in the morning, then the new curtains for the family room arrived, so I put them up. That entailed all sorts of climbing up and down the stepladder, but the room looks nicely finished now, especially since I finally put up all the family pictures over the weekend.

Tuesday night, I decided to tackle the dead monitor situation on the kids' computer. It had just stopped working a few days ago. I thought the monitor had died so I went out after supper and bought a new one. I fully expected to come home, plug it in, and be hailed as a hero in the morning, but it was not to be. After much switching around of monitors (and at least 2 hours' worth of looking for work-arounds and chatting with an HP technician), we determined that the monitor is in fact fine, it's the video card in the computer. That was disappointing, and time-consuming; I stayed up even later trying to find my transcript and failing.

I needed my transcript because this morning I met with the education advisor at Chandler-Gilbert Community College to see if I could do any coursework towards a teaching certificate there. Alas, I can't; they're just a community college and I'm a "post-bac" student. It's too bad, because they're only about 5 minutes away from here. It would've been very convenient. I spent a lot of time today looking into different programs at different schools around here, and believe I've found one, but I'll get to that eventually.

My research was interrupted by the appraiser; we're refinancing again to an equity accelerator mortgage. Even if the world goes nuts, we'll pay off our mortgage in about 11 years, which is pretty awesome.

Today I slugged through all my medical records and put them in order, and then went through them all and recorded my TSH and other thyroid levels on a worksheet that we've been recommending to our thyca patients for years now. As I suspected, my TSH has generally been between 0.05 and 0.07. But since I started tinkering with my meds, it hasn't been lower than 0.09, where it is now. I think I spent 2 hours on paperwork today.

It doesn't seem like much written out like this but most of it has been a struggle. My throat hurts all the time and I spend about 40% of my time feeling nauseated or bloated. I'm hoping I can get an increase in my thyroid meds to see whether or not it affects the gastroparesis. I'll find out tomorrow.

Friday, January 11, 2008

records check

Yesterday I saw my ENT, today I saw my endo. Between those two appointments and a recorded message, I have a whole bunch of tests results, because my ENT had all my test results from my g/e doc, and kindly gave me copies.

So, here's the rundown, chronologically.

November 20: Gastric Emptying Study. This is where I had to eat a radioactive hard-boiled egg and then lie on a scanner bed for 90 minutes while they watched the radioactive tracer leave my stomach. Only it didn't: "FINDINGS: Over the course of the examination, for the entirety of 90 minutes, there was relatively no emptying of radiotracer from the stomach." Impressions indicate gastroparesis or a gastric outlet obstruction, which explains why the EGD was ordered.

November 28: EGD, as previously discussed here. The EGD itself was unremarkable except for some redness, but now I have the biopsy results. The stomach samples showed "mild changes suggestive of a chemical gastropathy;" a "careful search" was made for H. pylori, and none was found. "Taken in aggregrate, the changes that are present are likely due to chemical or drug injury. There is no evidence of intestinal metaplasia or neoplasia." The esophageal biopsies were completely normal as well; no signs of Barrett's esophagus or any other pre-cancerous conditions. No signs of ulcers, either. This is all very good -- no obstructions or ulcers or pre-cancerous changes.

December 11: Video Stroboscopy
My right vocal fold and right arytenoid/TVF are slightly paralyzed (hypofunctioning), and this has caused other structures in my throat to hyperfunction to compensate. I've also got lumpy cricoid and arytenoid cartilage because of the gastric reflux. "Speech pathology services are recommended in conjunction with medical management to address the following: 1) vocal hygiene and hydration 2) laryngeal reposturing and relaxation 3) vocal function tasks 4) resonant treatment." Therapy recommended for 6-8 weeks, once a week; I'm scheduled to start Jan 30.

(This week in between tests I got DS1's horrid stomach virus, recovered, and went to Boston for the weekend.)

December 17: Air-contrast Upper GI - Small Bowel Series (fluoroscopy)
My reflux extends all the way up to the level of the carina (???), otherwise, I'm normal. Apparently, "to the level of the carina" is bad; the first thing my ENT said to me is "you have really extensive reflux," emphasis his. I thought we knew that already?

Jan 3: In to see the g/e doc, as discussed. So far, I am unimpressed by both Nexium and Aciphex, but Nexium works marginally better than Aciphex. Then again, I didn't drink about a quart of regular (that is, non-decaf) coffee accidentally when I was on the Nexium, so I don't know how it would've handled at. I got into a conversation about the new sugar free ("skinny") mocha at Starbucks and completely forgot to order it decaf. I didn't even realize my mistake until about an hour later when the jitters set in.

Jan 7: Labs drawn for complete blood count (CBC), liver function, and thyroid tests. I don't have the numbers for the CBC and liver functions yet, but I did get a call telling me everything was in normal range. I should get my copy of those tests early next week. I got my thyroid numbers today at the endo's. My TSH is 0.09, and it was the same back in November (11/19).

I had an ultrasound of my neck today, and will go back to my endo's office next Friday for my results, at which time I will beg for an increase in my meds. Historically, I've kept my TSH more suppressed than 0.09; I'm usually somewhere around 0.07, it seems to me. (I really have to get my records organized.) I don't know whether that slight difference in TSH can be causing or effecting the gastroparesis, but it's my first preference for treatment. I'd also like to not have freezing hands and feet all the time.

I know it's a teeny, tiny difference, but my TSH hasn't been down in the basement where it belongs for quite a while, and I'm hoping that bumping up the meds can resolve the gastroparesis and that the reflux will calm down.

Sunday, January 06, 2008

that didn't take long

On Thursday, I got a prescription for Reglan to help with my gastroparesis. I started it Thursday evening and took the prescribed 4 doses on Friday... and could barely keep my head up.

Thursday I was tired anyway, having been up stupid-late the night before. So Thursday night I went to bed at a decent hour and got plenty of sleep, and still Friday I was like a zombie. A zombie with bizarre emotional reactions, like laughing too long at something that would ordinarily merit a smile or at the most a chuckle.

Needless to say, I quit taking the stuff.

Yesterday's research brought me to a support forum where there was plenty of discussion of gastroparesis, Reglan, and all that jazz. I'd say the majority of people who talked about trying Reglan couldn't deal with the side effects, but some were helped by Domperidone, with fewer side effects.

Gastroparesis is caused either by damage to the vagus nerve*, or by a problem with the muscles that control the stomach's normal churning motions. Many cases are idiopathic, but hypothyroidism is linked to the condition. I even found an abstract that demonstrated that thyca patients who go hypo (become extremely hypothyroid) for their whole body scans develop gastroparesis during their hypo phase. I don't know why it took me so long to put these facts together, but I realized the following that may have something to do with my current condition:

1) I spent a good deal of time last year hypothyroid, because of the great med experiment in which I discontinued my Cytomel, and during which my endocrinologist was strangely loathe to increase my Levoxyl.
2) I had a Thyrogen-stimulated whole body scan in August. It's true that I did not become systemically hypothyroid, but my TSH was outrageous (159!), and I felt off for a while after that. So off, as a matter of fact, that I finally went back on my old Cytomel+Levoxyl regimen in early September.
3) I have no idea what my levels are, since I have yet to see my November thyroid panel results which were run to see how the return to the old regimen was suiting me. For all I know, I've been hypo this whole time. There have certainly been times when I've felt hypo -- cold all the time, skin drier than paper, funky hypo half-brows -- but I'm generally not fatigued, nor am I depressed or brain-fogged... that I've noticed, even though there has been a lot of stress lately.

I'm going tomorrow for bloodwork -- a thyroid panel from my endo, and complete blood work from my g/e doc -- so we'll get a look at what's really going on there. I'm actually seeing my endocrinologist on Friday, and I'm curious as to what my numbers look like, I haven't seen them since August. (She's an idiot about releasing them to her patients through the mail.)

I'm hopeful that the gastropareris is a result of being slightly hypo for many months, and that perhaps it can resolve on its own if I can tweak my levels appropriately.

* I could also have sustained damage to my vagus nerve during my surgeries; I know that I sustained some damage to my recurrent laryngeal nerve, which is a branch of the vagus. I really don't want to think about that, but it's something I'll discuss with my ENT when I see him on Thursday.

on the last day of Christmas

Low carb & sugar free, except for the white chocolate "ornaments"

I made a Christmas Tree cake to celebrate Epiphany, and to close out the kids' school vacation in style.

The cake itself is the ever-popular chocolate banana cake, with the same frosting mentioned in the column -- 8 ounces of cream cheese, softened, whipped with about 2T of sugar free vanilla syrup, folded into about a cup and a half of heavy cream, whipped separately with another couple of tablespoons of sf syrup. I added a tablespoon of dried egg whites to the frosting this time to see if it would stabilize it; it tends to evaporate overnight in the refrigerator. I used a ton of green food coloring but still the color came out that pale mint green, but the flavor and texture were excellent, and nicely set off the dense chocolate banana cake.

Trimmings were about 1/4 cup unsweetened coconut in a ziploc bag with a drizzle of sf syrup and 8 drops of liquid food coloring, followed by shaking like mad to distribute the color and sweetener evenly.

I used a teaspoon to trim the tree, and then dotted the white chocolate chips around for the ornaments.

We ate about a third of it after dinner. DD, who was over at a friend's house for most of the day, was completely enchanted with the cake when she came home. She finished her salad in record time so she wouldn't "have to wait forever to have some Christmas tree cake!" For the first time in recorded history, she finished dinner first.

It worked out perfectly having this now. We've eaten our way through all the Christmas treats and sweets. If I had made the cake for Christmas day, it would have been lost in the shuffle. Having it now made today special. The kids have already asked if we can do this again next year; I think it would make a lovely family tradition. I'm already looking forward to making a lamb cake at Easter.

Thursday, January 03, 2008

I'll try it, but I have my doubts

I saw the doctor today, and now have a diagnosis: my stomach doesn't empty properly. The doctor thinks I had an infection at some point and that led to this problem, technically called gastroparesis. It usually hits diabetics and some cancer patients, but there is a tiny percentage of people who get it following an infection, including, apparently, me.

I'm on a new drug to treat it, Reglan. The list of side effects (including dizziness, drowsiness, depression, suicidal ideation) is scary -- obviously I will have to pay attention to these things. If the dizzy/drowsy thing happens, I simply can't take it, because, you know, I have a life and it's not as if I can just give up driving.

Reglan, or metoclopramide, crosses the blood-brain barrier which is why it can cause these screwy side-effects. There's a drug available in Canada, Domperidone, that has much the same effect, but doesn't cross the barrier, and so has far fewer side effects. The only problem is, the FDA hasn't approved it -- and my g/e doc has no idea why they haven't. Apparently it's not difficult to get, though.

DH is highly skeptical that this is going to work: Oh, so you'll just go on this medication for 3 months and then you'll be fine? Right. I can see his point. I'm also concerned about the side effects, always thinking about that cost-v-benefit equation. How much is this really going to help to stop my acid reflux? The doctor suspects some muscle weakness in the ring muscle at the top of my stomach, but it's a chicken/egg situation: the slow emptying is stressing the ring muscle, so if the emptying improves, maybe the muscle can get better and that will help, too.

Possibly the worst thing about this new drug is that I'm supposed to take it 30 minutes before I eat, 3 times a day. I do not eat on anything even remotely like a schedule, and now I'm supposed to figure out when I'm eating, subtract 30 minutes from that, and remember to take this stuff? Breakfast and supper shouldn't be too difficult, but lunch is always going to be a problem. At least it doesn't interfere with any other medications or supplements (at least not the ones I'm taking.)

In the meantime, I've got two different acid-blockers to try out as well. This is going to take a little while to figure out. I took one at dinner and felt a little spacy, but I had been feeling exhausted all day. Am I just tired, or is it the new meds? We'll see what happens tomorrow.

wrapping up

I managed to get quite a bit of stuff done around the house before DH came home on the first. The kids have been terrific, with today being the first day we've had any kind of a spat -- I think DS2 has had too much vacation, and too little sleep. Just a few more days, and then it's back to the grind. This has been a lovely interlude, even including the occasional child's freakout.

Tomorrow I'm seeing Dr. G, my gastroenterologist, about all those tests he ordered. I haven't taken the Questran in a few weeks now, and haven't needed it; we'll see how I do once I'm not taking the post-op Cipro that I completed today. I'm holding out hope that whatever the problems were, they were caused by the medications, even though I know I had a real problem (acid reflux) which is what started the whole thing going anyway. I will admit to being quite nervous about this appointment, because something is going on with my weight, I'm eating ridiculously and holding steady at about 136 pounds. I like this weight, but I wonder what would happen if I stopped eating all the junk I've been indulging in. Usually after a stomach virus, your weight bounces right back up, but mine hasn't, and that is making me somewhat agitated even though it is a small weight loss (about 7 pounds).

Next week I see both Dr. O, my ENT, and Dr. R, my endocrinologist. The ENT appointment is my last follow-up on the septoplasty and turbinate reduction, which has gone very well, I'd say. My front teeth are still killing me from time to time (not enough for me to want to medicate even with ibuprofen), but at least I can breathe through my nose, all the time. It's a miracle! But we will also discuss what is to be done about the results of the video stroboscopy, which showed deformities of my cricoid and arytenoid cartilage in my esophagus. I have no idea what caused that (reflux? compensating for the nerve damage from my surgery?) and no idea what can be done to correct it. I will probably end up in voice therapy for a few weeks because apparently I have a horrible posture (!) and am doing bad things, voice-wise; who knew? Well, physical therapy has always helped me and this should, too, since my throat gets very sore by the end of the day. It will be nice to know what's going on in there.

The endo appointment, I have no idea what's going to happen. She's rather intractable about an important issue, namely, releasing copies of lab and other test results by mail or over the phone. She insists that everyone come in to get them, which is ridiculous for routine follow-ups requiring no further treatment or intervention. I have the feeling I may be booted from her practice because I keep bringing this up. It would really be too bad, but I frankly don't want to have to deal with driving 45-60 minutes and spending $50 just to sit there for a half an hour until I can get a photocopy of my perfectly fine lab results. It's stupid. I'm curious to see what my thyroid panel looks like, though, since my skin is ridiculously dry but I'm not having any other hypo symptoms. It's weird, and possibly related to my recent experiment with discontinuing my supplements and then adding them back in over time to see how they affect me. So far, the effects on my digestion have been excellent -- no Prilosec, no need for Questran! -- but my RA is flaring slightly, everything feels a bit stiff, and as I said, my skin is incredibly dry in spite of a real effort to stay more hydrated and ridiculous quantities of lotions, balms, etc applied in effort to keep me from cracking and peeling into oblivion.

The dry skin is annoying, but I'm dealing with it, just as I'll deal with whatever the g/e doc says tomorrow. I dread him saying that the tests are inconclusive, just as I dread him saying it's something serious -- how serious could it be, after all? I'm not sick!

There's no point in this kind of anxiety-building speculation, but I always do it anyway. I don't even have any guesses this time. I was hoping for H. pylori, which has a relatively easy treatment, but I think if it was that, I would've been treated for it already. (If it turns out to be H. pylori, I will definitely scold him for waiting so long to tell me.) I have to remind myself, it's not always bad news. Really, it's not.