Saturday, August 2, 2008


No wonder I don't know what day it is. I was up until 6am last night--I mean today. My mind is just racing. I feel sort of scattered but seem to be able to focus well and even finish tasks. Unfortunately, I am focused on entirely trivial things. It would probably be better if I could focus on something relatively important that I put off for weeks while I was feeling so bad. (I think I'll count "posting on my blog" in the relatively important column.)

I think I recognize this as a pattern from previous times when I have changed the Marshall Protocol meds according to the dosing schedule. When I reduce one of them significantly, it's like I wake up from a dream.

Only now I know: this is how I will feel when I'm well. Not that I have energy, exactly, but things don't seem overwhelming. It would be amazing to be able to count on feeling this way, on having a brain, for days or weeks at a time: I might even be able to do something crazy like start practicing law again. Is that what being well would be like?

I still have some brain fog. I'm having some pretty dreadful memory lapses and I'm still dropping nouns in speech. Numbers still baffle me. I'm still tired, and not rested. (And the insomnia of this phase won't help with that.) I still have joint and muscular pain. Lots of other symptoms I won't bore you with. But I'm having moments, hours even, of mental clarity. The comparison to how I felt less than a week ago is stark.

This is real. The Marshall Protocol is the cure.


I was so brain-fogged the other day when I wrote the previous post that I didn't know what day it was. Not that it matters substantially in the greater scheme of things, but when I wrote "tomorrow," I should have written "today"--but I didn't know what day it was. The good news is that the change in dosage levels that day (Wednesday) has led to me feeling substantially better. All my symptoms have lessened and I've felt well enough today and yesterday to play the piano a little and also--here's the scary part--upload all kinds of crapola to Facebook.

This is more complicated than it sounds because it involved audio and video. Now, I have been a techno-nerd since 1982, and I build my own computers, but I have resisted joining the media blitz on the internet for years. I'm pretty much a luddite when it comes to multimedia, and don't even own an iPod. I hate noisy and blinky things in my web experience and so I use a browser that makes it really easy to turn all that multimedia garbage off by default. What this means however is that I am increasingly having to adjust the content blocker and the plugin stopper for individual websites like Facebook, and for some things I even have to switch to a more popular browser so that things will work, especially if multimedia is involved.

So yesterday I started with what I thought was a relatively simple task: figure out a way to get a certain recording off of a CD and onto my Facebook profile as an MP3. But, as always, things are never simple when Windoze is involved, and it gets worse when you throw in the nonsense called DRM [rant omitted]. I eventually accomplished the goal but it set me onto other ones: figure out a way to capture streaming video for later playback (for free); figure out a way to post other multimedia stuff to my Facebook profile. I spent most of the day today at cnet researching freeware (with a detour to the WayBack Machine at, discovering the fun at, and revisiting a karaoke site where I recorded a bunch of songs last summer for fun. I still haven't found the right software to capture that stream, but I did find an interface that enabled me to post my karaoke recordings to my Facebook profile.

Just in case you're wondering, I already know how to post my karaoke recordings to my blog. But don't worry, I'm not going to.

Wednesday, July 30, 2008

3/4 through Phase 2

Tomorrow I start the last level of Phase 2. Hopefully it will last only 40 days.

The past 40 days, as time has worn on, life has become increasingly like the CFS relapses I remember. It's not as bad as when I first got sick (that was like having mono for two years) but it is almost as bad as--to pick a couple of relapses at random--my first 2005 relapse (when I stopped working) and the second one that year (after Hurricane Rita). The main symptoms, besides fatigue, are a heaviness in my chest and limbs, some joint pain, some muscular pain, brain fog, and not really caring about much of anything. Sometimes, usually late at night and depending on the dosage schedule, I get this itchy feeling all over my body under my skin, which usually makes me anxious and restless for a little while. And for the past few days I've been seeing some edema, craving salty foods, and a bit grumpy. The latter could of course be plain, old-fashioned PMS--it's hard for me to judge. In the olden days I used to gain (and lose) as much as seven pounds every month--which at my height and weight is a full clothing size or more.

Although some of these symptoms are annoying, there's nothing truly dreadful. I think the most important thing right now in fact is to maintain an awareness of the symptoms, especially the neurological ones, because as the MP starts killing bugs in my brain it will probably become harder to see the forest for the trees and so keep my perspective.

The most significant thing is that despite the fact I'm "as sick as I was" instead of "feeling better," I know that with the Marshall Protocl, there is an endpoint. It may be years from now, but it will get here. After literally a full decade of blindly hoping that tomorrow, next week, next month, next year I would feel better and be able to live a normal life, it is so much easier now because I know that eventually I WILL be able to live a normal life. There is certainty, not just helpless wishing.

Thursday, July 24, 2008

Trying to go out more

My niece's wedding last weekend was wonderful. I was so grateful to be able to go. Folks seemed to like my hat/scarf/gloves/glasses and I practiced my Royalty Wave. The wedding was a couple of hours' drive away and was outdoors at 7pm (sunset is at 8:30). I used the prescription cream on my face and took extra Benicar and the sun really wasn't as oppressive as it was during my outing earlier in the week (when I took the same precautions and was out for a shorter period)-- who knows why? I used a sunshade while in the car and after we got to the venue rested in a room with no windows. After the ceremony, I kept my paraphernalia on while near windows inside until it got dark.

I even managed to dance with the groom (to an Elvis song!) but I was too tired to join in the line dancing. My parents nearly won a dancing contest, for the couple married the longest! I had never seen them dance before as my father usually refuses to dance but to everyone's utter shock he took my mom to the floor and they were only defeated by a couple who had been married one year longer. They celebrated their 42nd wedding anniversary this week!

Since that big adventure I've been resting a lot, but I did go out the other night at dusk. I didn't use the cream/hat/gloves/scarf but I did take extra Benicar and wear the NoIR glasses. It went well but I have been really tired since.

And now, for something completely different:

I looked up the word "paraphernalia" to make sure I had spelled it correctly and learned that although its modern usage is generally personal equipment or accessories, the historical definition is "the separate real or personal property of a married woman that she can dispose of by will and sometimes according to common law during her life!" Wow, who knew? The etymology is from the Greek (via medieval Latin of course) and is "bride's property beyond her dowry, from para- + phernē dowry, from pherein to bear."

Thursday, July 17, 2008

out during daylight

I actually went out this week. I went to get my hair done. My niece is getting married this weekend and so vanity required that I get it cut and colored.

The good news is, all the hormonal adjustments the MP has caused mean that my hair is healthier than it's been in years. It's thicker, smoother, stronger, and isn't falling out or breaking all the time. The bad news is, it's still coming in about half white (it started going gray when I was 27, shortly before I got sick). The good news is, my stylist got the color to exactly the color it was when I was a teenager! Happy, happy, joy, joy! Someday my natural color will be back. There was an 80 year old man on the MP whose hair had been white for decades and it suddenly started coming in dark. So there's hope.

I was out for about four hours and really found the sun oppressive. It didn't make me feel ill, but getting out of the sun was a relief. During the drive home (heading west) I put a scarf over the lower half of my face (along with hat, NoIR sunglasses, gloves, long sleeves, jeans, and boots) and the relief was palpable. When I got home I wanted nothing more than to retreat into my dark bedroom; I even shut the door which I don't usually bother to do. When I shut my eyes I saw flashing lights. Eek! Fortunately the flashing went away after twenty or thirty minutes, and I felt much better. Since then, just a little extra tired.

My niece is getting married on Saturday evening and I will probably be out during daylight for about six hours. It shouldn't be too bad as I'll be well prepared.

Wednesday, July 9, 2008


I have no excuse for not writing for three months. Well, I have an excuse, but it's not a good one. I'm tired.

I passed the halfway mark in Phase 2 of the Marshall Protocol a couple of weeks ago. With any luck, my current schedule will allow me to start Phase 3 by about the time of the autumnal equinox. So that makes Phase 2 about six months, at least on the schedule I chose. I could have pushed through it a little faster, but slow and steady wins the race. And kills more bugs.

It's hard to write about the last few months. There's nothing dire or dreadful, but I've been feeling a little more like I did when I first became ill, or when I relapsed, than I did during Phase 1. I have no motivation to do anything constructive, even write whiny blog posts. I watch way too much TV, read books, and play games on Facebook. Every now and then I do something crazy like play the piano or dust. But my "to do" list hasn't gotten any shorter since my last blog post.

But lest this sounds morose, let me assure the world that the MP is working and I am not depressed. There have been some signficant physical changes recently and although I am as tired as ever I know that my immune system is coughing back to life and killing bugs. It's just going to take time.

I will try harder to post regularly.

Monday, April 7, 2008

Phase 2 coming right up

I ordered my new Phase 2 antibiotic for the Marshall Protocol today and should be able to start it on Wednesday.

I am so immensely grateful because although I was dreading it somewhat, it turned out to be really easy. Doctor and pharmacy both very helpful. I was afraid I'd have to wait a while because some people have reported a difficulty with getting the right dosage but the pharmacy said it would be no problem.

My physical symptoms have been stable for the last three weeks or so, but this weekend I had a sudden increase of symptoms. I was afraid I was just treading water while waiting to start Phase 2 but evidently I am still killing bugs! Hooray! The symptoms were mostly achy and weak muscles and some joint pain. Also a new pain in my left forearm above the wrist, like I imagine it might feel to be stabbed. It might be an old injury (a subclinical break?) or it might be where I was diagnosed a couple of years ago with "mild osteoarthritis." Who knows, but whatever it is, my immune system has found a new pocket of bugs and is on the warpath!

I am sleeping really well. Still having some irrational anxiety but it's better too. Phase 2, here I come!

Sunday, April 6, 2008


This past week I've been studying Phase 2 of the Marshall Protocol and making plans to start it. It is rather daunting. It makes Phase 1 look like a wading pool; now I'm about to dive off the high board. The absolute fastest that Phase 2 can be completed is about six months, and it's much more likely to take twice that, or even more. I have to decide if it would be prudent for me to go even more slowly than standard. And although what I learned in Phase 1 will be helpful, the patterns I've gotten used to are pretty much gone. Instead of a 48 hour cycle, it is a ten day cycle. Actually it is both, because the 48 hour cycle continues but with a ten day cycle layered on top of it. It changes the dynamic completely. I can't explain it any more clearly than that.

For the last few days I've been grumpy and anxious and restless. I am ready to start but it is hard to let go of the feeling of control I've had for the past few weeks. I am revisiting the paradox I wrote about a few weeks ago.

People are asking me when I will be able to come back out into the sunlight. A few weeks ago I was hopeful that I would reach that point by the fall. Now I am not so sure. It is hard to let go of expectation.

But I am so grateful.

Saturday, March 29, 2008


Last week when I posted about finding old New Orleans BBS buddies online, I learned a few things about my old "handle," Guenivere. At the time I "called the boards," as the term was, I was often accused of "misspelling" the name (usually spelled "Guinevere" after Tennyson) and had to defend my choice. For the record, the reasons for my chosen spelling were: (1) the diminuitives "Guen" (i.e., Gwen) and "Guennie" ("Gwennie") didn't really work--to my ear at least--as Guin and Guinnie. I prefer the softer "e" sound in the first syllable. (Of course, some pundits insisted on pronouncing it "Goonie.") (2) There is no "right" or "wrong" spelling anyway. The "real" name is actually "Gwynhwfar" with a modern English rendering of Jennifer. Anyway, I thought the spelling I chose was distinctive.

So today, when I do a Google search for "Guenivere" just to see what's out there, although the search engine dutifully asks me if I really meant "Guinevere" (and provides hits with that spelling unless I put "Guenivere" in quotation marks), it turns out that there are plenty (over 28K--so much for distinctive!) of hits for my "wrong" spelling of Arthur's queen's name. Perhaps some of them are also "misspellings" but it appears to be deliberately chose by many. There are a surprising number of women who use it either as a real name or as an alias, and at least two pop songs with "my" spelling in the lyrics all over the net. One song contains a line, "I loved you, Guenivere," repeated over and over again like a mantra. Another song says, "I'm no lady, I am Guenivere." (Well, humph.) It is also apparently a very popular name for cats.

So much for mystery, history, legend, and a commanding alias to hide behind while posting online!

Thursday, March 27, 2008

Good news

I finally got my latest Vitamin D bloodwork results back and the numbers are well within the target range! Woo-hoo!

I will soon be moving on to Phase 2 of the Marshall Protocol, probably next week. I have had fairly minimal immunopathology for the last couple of weeks except for being consistently tired. A few symptoms are almost gone. I have a long way to go, but overall I'm very pleased.

Sunday, March 23, 2008

Happy Easter!

I was able to go sing last night at Easter Vigil mass, which was a great pleasure. I really miss singing, and after the EV mass the choir always goes out for breakfast so I was able to visit with everyone. Got lots of hugs. It's nice to be missed. And it's nice to know that I still have a B-flat!

This was my sixth outing since starting the Marshall Protocol January 23rd, the third night-time outing. I was really pleased to be able to manage my meds successfully so that going out was possible. Honestly I don't miss going out very much; I've always been inclined to be a homebody and the darkened confinement suits me well: I feel protected and safe, and have no trouble keeping myself amused. The only thing I find a bit disjointing is the passing of the seasons. My mental image of outdoors is one of mid-January, so when I go outside at night and see plants and trees blooming it's a bit startling. Sometimes when it is very quiet I can hear the bees buzzing in the azaleas outside my window and it takes me a moment to identify the sound.

I am tired today of course and am staying home to rest. My parents are going to the usual family gathering, which is at my cousin's house about an hour away. She (my cousin) came here on Good Friday and spent the day with me, a very nice visit. I like having her back close by (she lived out of state for 15 years). She made me smile and laugh so much that my cheeks hurt!

Best wishes for a happy Easter to everyone!

Saturday, March 22, 2008


Lately I've been making more and more connections to people I knew when I was growing up. My 20th high school reunion was last summer, and although I didn't go, it prompted several email exchanges with people I hadn't seen since then. Then a few months ago I got on Facebook, and made several connections there, some with people I've known since first or second grade. A few more showed up in LinkedIn. On my personal website I also have a bunch of class pictures up from elementary school-- more trickle in.

I especially love reconnecting from people from elementary school. I was lucky enough to live in the same place K-12 and so go to school with a group of kids that knew each other all that time. A lot of kids don't have that kind of stability. People you knew from age 6-10 know the real you, before you started trying to live up to the expectations of others.

Just a few days ago, I was thinking about all the people I met online during my last year of college, when "BBSing" was the geeky thing to do. This was before the internet existed. People would use a modem and call a computer which ran the BBS software. You could leave messages for other people and play some online games (all text-based). Most BBSes had only one phone line in so only one person could be logged in at a time. Some were networked, and so you could send messages across the country or around the world. (Along with the academically-based Bitnet, the Fido network was one of the first ways to share genealogical research online.)

In New Orleans, where I went to college, there was a distinct BBS community. (Later, when I went to law school in Chicago, I joined Chinet, which was the world's first BBS; I still log in there occasionally and it just celebrated its 30th anniversary in February.) One of the fun things about it was that most people used an alias to log in; I was Guenivere. Some people created lots of aliases and personas to go with them, but I was always just Guennie. I had friends with monikers like Alcor, Shinzu, Pundit, Awesome Heap, Homeboy, Flavius, Jezebel, Mortie, Socrates, Piano Man, Princess Toadstool, Wizard, Shinobi, Mr. Fender Jaguar, Thinker, Attila the Hun, Count Strahd, Limulus. . . the list goes on and on. These people, of course, are the opposite of those elementary school classmates of mine, in terms of being able to know the "real" person behind the exterior persona we all present to the world.

Anyway, this past week I was thinking about all this and I did an online search and came up with a nostalgic blog post by my old BBS buddy Jezebel about much the same thing. She told me about BBSmates, which is a site much akin to, but without the hype. So I found a bunch more folks I used to know. I sure would like to connect with a few more, though. (Not naming any names, Bruce!)

Yesterday I got email from someone who was my next-door neighbor when I was three years old. (Though when we moved it was only a couple of blocks away and stayed there until after I graduated from college--and his mom was my babysitter after school.) I think that one must be a record!

Thursday, March 20, 2008

The Lake House

I saw a movie last week without knowing much about it beforehand, and it took me by surprise how much I liked it. It's called The Lake House. It's about falling in love with a pen pal, and it has a timeline paradox worthy of Star Trek. (Of course, I love Star Trek, so timeline paradoxes don't bother me too much.) But this movie has a few other things that are quite special. A Pulitzer-winning playwright for a screenwriter and a director with a vision, just to mention two. Together they have created a richly textured story, with themes and nuances at every level. Every time I turn around I find another thread that ties back into it.

Themes of isolation, disconnectedness, distance, control, containment—also love, timing, meeting the right person at the wrong time, waiting, second chances, trust, and finally redemption and fulfillment. "Moving forward:" when is it really moving backward? Resistance to taking what (or who) is offered to you and having the courage to seize what (or who) you want instead. Taking risks, eschewing the "safe" alternative. Architecture, especially Chicago's, but also how it relates and creates feelings of connection (or disconnection) and control over one's environment. Yearning, waiting for the other to be ready. Identity, making a fresh start. The protaganists' lives are parallel, because they are experiencing the same things: losing their fathers, finding out who they are, trying to put the past behind them and make a new start, becoming a whole person. Light. Soul mates. Using hands—building, renovating, writing, drawing, healing—and touching, especially by proxy.

This film is definitely in my all-time top ten list. Rent it. Here's the trailer.

Monday, March 3, 2008

MP Phase 1, still chugging

The MP is a paradox in many ways.

Getting the immune system to work as designed, instead of the usual approach of modern medicine to suppress it (to make you "feel better") means that you feel much worse while you are actually getting better.

The MP is about regaining control of your life-- and yet while on it, you have no real control over how your body will respond and how you will feel.

You can control dosage amounts and timing, but that doesn't always control how you feel. Before the MP, I knew that if I took certain palliative medications, I would feel better within a given amount of time. With the MP, I can change my dosage and timing in an effort to ensure that I will feel well enough to attend an event on a certain day-- but there's no certainty that I will.

I have control in the broadest sense--I am following a curative therapy, I am in charge of what doses and times I take my meds--but in all the small, day-to-day things I have no control over how my body feels or will feel, and everything beyond making it through the next hour seems completely overwhelming.

I know that a lot of this is immunopathology. One of the guarantees of the MP is that all of the bad things you have ever felt--physically, mentally, and emotionally--come back. Not all at once, not one at a time, and sometimes over and over again. Part of the MP is understanding that, and owning it, acknowledging that the emotional and mental feelings as well as the physical ones are part of the disease. And then letting it all go.

Letting go, of course, is releasing control.

I've had a tough time these last couple of weeks, but I am making progress.

Saturday, February 16, 2008

MP, Phase 1

I meant this to be almost a daily journal of life on the MP, but it hasn't worked out that way. Writing seems to be hard.

I am nearly halfway through Phase 1 of the MP and so far, things seem to be tracking pretty closely to the predictions. I am starting to experience immunopathology (herxing) which I can no longer rationally attribute to anything other than the protocol. My Vitamin D levels are coming down. My innate immune system is sputtering to life.

So far the immunopathology is mostly a cross between menopause and the flu. Not fun, but not too bad compared to what I've been putting up with for over a decade. I am doing very little, staying in my darkened rooms during the day, reading and resting. It's not all that much of a lifestyle change for me. In some ways, it feels like a burden is lifted, because I no longer have to try to force myself to go out and do things. At some point when I'm feeling better I'll be able to go out at night, but for now it's really nice to say: this is my job. I don't have to do anything else.

Edited to correct headline (it said "Phase 2"-- I blame it on brain fog).

Tuesday, January 29, 2008

MP, week 1

I started the first Marshall Protocol drug a week ago, and will soon be starting the second.

Technically, this means I'm not quite in Phase 1 yet. I'm sort of in-between. The last preliminary.

The MP is divided into three phases. All phases involve a drug that acts as an angiotensin receptor blocker, or ARB. Phase 1 adds one antibiotic to the ARB. Phases 2 and 3 involve adding different antibiotics in various combinations.

The ARB helps my innate immune system to begin functioning properly again. When I start the antibiotic, it will be at a low dose, and "pulsed," meaning that instead of keeping the dose steady so that it's always at the same level in my bloodstream (as I do for the ARB), it is allowed to peak and recede before taking it again. Initially, I'll take one small dose every other day. During Phase 1 I will vary the antibiotic dosage strengths and the time between doses. More importantly, I will learn to manage my Herxheimer reactions, or, as they're called today, immunopathology. This is a highly simplified explanation, of course.

I don't know how long Phase 1 will last, except that it won't be less than six weeks; it takes that long just to progress through the dosing variations. Then I'll move on to Phase 2.

There isn't a direct correllation between which Phase you are in and how you feel, beyond the loose association with feeling slowly better as time goes on. For people like me with chronic fatigue, the current wisdom says that it will probably be two full years before I start to observe substantial improvement. That's a very long time, but as I've said earlier, two years from now I'd still be sick without the MP. But three years from now, I hope with the MP I will be seeing a return to health. (I'm just trying to get this down in black and white, to remind myself later if I'm having a hard time that I need to stick with it.)

Symptoms this week: headaches, lethargy, body temperature dysregulation (cold feet & hands, hot elsewhere), significant photosensitivity (can't even glance at the monitor or TV without NoIR sunglasses), normal hunger/satiety, lessening of hypoglycemic symptoms, restoration of sleeping patterns, and no edema. Symptoms missing: joint pain, fever, sinusitis.

I am not doing much. I didn't even turn on the computer three or four days this week. I have been adjusting to staying in my darkened rooms during daylight. Thursday I have my first excursion into sunlight: I have to go see my GP for my annual physical (which was rescheduled last week). I have hat, gloves, scarf, boots, etc., so I think it's a challenge I can manage.

Tuesday, January 22, 2008

T minus 1 day and counting

I start the Marshall Protocol tomorrow!!

The drapery-making experiment was successful and my bedroom and study are now very dark. I have been using smaller-wattage bulbs, reducing it in stages. 30 lux isn't really all that dark; it's like mood-lighting in a restaurant.

Since my experience the other day with flourescent lighting, I've been trying to minimize my exposure to flourescents, using the NoIRs whenever they are unavoidable. This house is principally lit by two methods: flourescents and huge windows letting in lots of natural light. I am planning to stay in my two rooms during daylight, though we are working on making two other rooms MP-compatible too. The biggest challenge is the kitchen/dining area, but we aren't dealing with that right now. With any luck my photosensitivity will lessen within a couple of months.

Today I have a doctor's appointment to get an MP-compatible cholesterol medication (which I've been trying to do for months) and will go shopping to purchase a few more things, plus MP-compatible foods. And I'm going to the chiropractor. Haven't seen him in a while and I've missed him!

Friday, January 18, 2008

I know I can. . .

I WILL get there. I'm not sure whose timetable we're on here, but it will happen.

In another bit of synchronicity, yesterday I learned that a medication I was taking that I thought was going to be okay to take while on the MP won't be. I also got a mailing from my doctor informing me that it's time for my annual physical, so they won't renew any prescriptions anyway. I got blood drawn this morning and have my appointment for the physical on Tuesday morning. I think this is going to work out to be perfect timing if I wait and start the MP on Wednesday.

I have started making curtains. The first one was of course the hardest, but now that I have all the preliminaries done and a method established, the rest should go pretty quickly. I got pull-down shades for a couple of rooms and it turned out that the shades, which are cut-to-fit, are exactly the right size as-is. Also, a pair of blackout drapery panels I bought last week and decided I couldn't use for their initial purpose turns out to be exactly the size I need in another place, so I can use them instead of going to the trouble of returning them. Everything's falling into place.

Today I went shopping, and had a terrible headache all day, which was threatening to turn into a migraine (nausea, etc.). The usual meds (including coffee, chocolate, half a hydrocordone, and ibuprofen) didn't help. It was overcast, cold, and rainy, but when I finally decided to head for home I got out my new NoIR sunglasses (the special ones I had to order for the MP). They block all IR, UV, and blue-spectrum, and only allow in ten percent of the visible light spectrum (the other pair only allows in two percent). I put them on and it was like throwing a switch. I could feel the blood vessels in my head, especially around my eyes, relaxing. By the time I got home, my headache was almost gone.

I was amazed, because I'm not taking any of the MP meds yet, so I figured I wouldn't be any more light sensitive than usual. Well, I think I've learned that my "usual" included more significant photosensitivity than I knew, including intolerance to flourescent lighting (in all the stores I went in). I have always hated flourescent lights with a passion! Other people thought I was nuts. But now I know that it's real.

I've been wearing them indoors since I got home, including at the computer (LCDs are backlit by flourescent light), and I feel so much better than I did earlier today. It is AMAZING. I had been using them at the computer about 60% of the time since I got them a couple of days ago. Now I will use them 100% of the time!

Other people have written over at the MP website that the NoIRs are "soothing." I didn't know what that meant. Now I do.

Sunday, January 13, 2008

MP checklist

Symptoms: extereme fatigue ("post exertional malaise"), hot and cold. Pain, headache, etc. minimal.

I actually took a nap today, which is perhaps not surprising given the amount of activity I've had the last few days. I don't usually take naps. Really doing quite well considering.

My dad continues to improve. He was able to exert himself for some minimal physical activity today and his brain is sharper than mine and Mom's combined.

I still have three big things left on my pre-MP checklist. I am still waiting for my NoIR sunglasses. I have to get the handicap tags for the cars (tried to do this Friday but was unable to). And I have yet to set a stitch to make curtains! I will get the tags tomorrow, and start on the curtains on Tuesday. Hopefully I can start on Wednesday. I have had success with finding other items that I need (clothing, low-wattage lightbulbs, etc.) and I'm Ready.

The Met

Yesterday, I went to the Met.

The Metropolitan Opera is broadcasting some of its productions live in HD at movie theaters around the world, and Beaumont is lucky enough to be on the list. For $22 ($20 for seniors, $15 for children 11 and under) you get to sit in a movie theater at Tinseltown with other opera nuts and experience some of the finest opera in the world. It is extraordinary.

The Met did this last year too, but Beaumont wasn't on the list and you had to drive to Houston for the performances, which were often sold out. Travelling even the short distance to Houston for a day trip is not realistic for me, so I wasn't able to go. But just before Christmas, I learned that the Met had come to Beaumont this season. What a Christmas present! I had missed the first one (Romeo & Juliet) but got to see Hansel & Gretel and Verdi's MacBeth.

I could wax lyrical at some length about how marvelous, how magnificent, how sublime it all is, but opera is one of those things that you either love or don't, so I will spare you of all the details; but I will say this: if you have never seen live opera, or if you have never seen a good one, you owe it to yourself to go just once. Check the links above to find out if there's a theater in your area showing the live HD theater broadcasts. It is so much better than watching it on PBS in your living room! It is like you are really there.

Afterwards I went out to eat with some others who were there to talk about the production and enjoy some good food and good company. I made four new friends and I'm really looking forward to the next show, which is in five weeks. Hopefully I will have progressed enough on the MP by then to be able to go!

On another musical note, today at mass my church choir premiered a new choral piece by our conductor. It was gorgeous. Spine tingling! And I can say that the day after going to the Met! We won't be singing but once for the next five Sundays, so I won't even have to miss singing. I have no idea how long it will be before I'm able to go back to church and sing, though I was hoping to be able to make limited excursions in about six weeks. We'll see.

Thursday, January 10, 2008


Symptoms: mild headache, joint & muscular pain. Not sleeping well. Cold, tired, a little scared about what I'm getting into. Hunger has slacked off a bit and I actually got full twice yesterday and stopped eating when there was still food on my plate. A very good thing!!

Activity: I went on a successful shopping quest yesterday for boot-cut jeans and also went to choir practice, where I found standing very fatiguing but otherwise did better than I expected. However, a few hours before I left for town, I couldn't handle the idea of going out into the sun for ten minutes for a gentle walk around the back yard with my dad. Have I always felt this way about bright light? I think so, except for the years I lived in Chicago.

The shopping quest victory was something major to scratch off my to-do list. My plan is to wear my cowgirl boots whenever I have to go outside while on the MP (I am, after all, a Texan) but I didn't have a pair of boot-cut jeans that fit. I tried to buy new ones but couldn't find a pair that fit: I'm short, low-rise jeans don't fit (I tried on many pairs), and I need the heavy non-stretch denim that's not very popular right now. In short (so to speak), I need an old-fashioned pair of jeans. I didn't really think it would be that difficult to find them in Beaumont, but I was wrong. I almost bought some Wrangler's at a western wear store but they were too long. I lost count of the number of jeans I tried on at Sears, the Gap, etc. Based on my experiences trying on new jeans, I was wary of buying jeans on eBay: the cuts, fabrics, and sizing have all changed in the last few years.

Yesterday I went to the resale shops and had much better luck. I found TWO pairs that fit out of approximately two dozen pairs tried on. They were both Levi's, and very inexpensive too! And as a bonus, I also found an item which has been on my "I need to get one of those one of these days" list: a globe. It's on a stand, is fairly recent, and has a lot of details far above and beyond what I would have happily settled for-- for $10! Don't you just love bargains? I was wishing for a globe just a couple of days ago when reading a spy novel where the terrorists crossed the border in Vermont and I couldn't recall the exact geography-- and who wants to stop and look up something on Google Earth when you're in the middle of a good book?

On the MP front, I should have my meds in hand this afternoon; still waiting for my special sunglasses and Vit D test results; hope to go get the handicap tag this afternoon; haven't started the curtains.

I posted at least once before on the timing of everything coming together so that I could start the MP this spring, and last night was gifted with another one: after this Sunday (the 13th), due to a variety of reasons which I won't list, my church choir will not be singing but once in the next five weeks. This Sunday we are premiering a new piece our conductor wrote, which I don't want to miss. I was already tentatively planning to start the MP on Monday at the earliest so that I wouldn't miss mass this week, and I have tentatively been planning to hibernate for about six weeks. So it is all working out!

Tuesday, January 8, 2008


I forgot to post today's symptoms in my last post. In addition to all of yesterday's symptoms, and feeling hungry, today I feel completely drained, just like in the darkest days of my illness. I was planning to go to town today to do some errands and to do some further prep work at home, but so far all I've managed to do is eat, shower, and read a book. My limbs feel heavy, and I'm going from moments of enthusiasm for the MP to moments of worrying if I'll even make it to the starting line. The worst thing is, there's nothing really I can do to feel better, because if I were to start taking the old drug at the old dose again, it would be a week or ten days before I felt better. So I've just got to stick with my plans for starting the MP as soon as I can get it together.

Another description of the MP

I just read an interview over at Amy's blog with Greg Blaney, M.D. He is a physician who has treated himself with the MP and now treats many patients with it. He provides an excellent summary of the science behind the MP and how it works.

Another interview on Amy's site describes a constant hunger similar to mine as a symptom that resolved with the MP. I am really looking forward to these hormonal adjustments. Seems like I'm finding a new symptom every day that the spironolactone used to control, but the hunger is still the worst. I am more hungry when I'm almost finished with a meal than I was when I started. It stinks!!

Monday, January 7, 2008

Tough week

This has been a hard week, but I'm moving forward with my MP preparations. I've ordered my special sunglasses and purchased blackout liner to make curtains. I've got hats, gloves, and scarves. Still a few things yet to check off the list, but I'm making progress slowly but surely.

The hardest part of the last couple of weeks has been weaning off of some of the meds I've been taking. One in particular is hard to live without. Some old symptoms are coming back that it used to control; the biggest one is that I am hungry all the time. I get no satisfaction or pleasure from eating, and never feel full, even though I'm eating two or three times as much as I was a couple of weeks ago! (I am afraid to get on the scale.) It's mostly blood sugar and it's no fun, but I know that the MP will fix it in time-- not just mask the symptoms. So I guess it's a reminder of why I'm about to start the MP.

I have been very tired. Lots of brain fog, general malaise, some grumpiness. Also low grade fever, some edema (from weaning off the above-mentioned drug), some joint and muscle pain. I'm weaning off coffee, too, but have had fewer symptoms from that than I expected, at least compared to all the other symptoms. I had some bad headaches this week but that was before restricting caffeine and between pain meds and heating pads, they went away. I think it was just tension.

I am ready to start the MP. Just got to get those last few things done first.