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.

scared

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.

Guenivere

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!

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!

Reconnecting

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 Classmates.com, 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!

Catching up

I've let this blog sit and collect dust this fall, but I haven't forgotten it. It's just been a difficult few months; I've had several singing commitments that required significant rehearsal times, and then my dad was in the hospital for a month (3 weeks, 1 week home, 1 more week in) starting the day before Thanksgiving. He's much better now and I won't give a detailed report here, partly because it was very complicated, but he's turned the corner.

My job while he was in the hospital (and my mom was there 16 hours/day in Beaumont and 24/7 the two weeks he was in Houston) was to keep up with the house and bills and take care of myself and our pets (and go to rehearsals and performances). I didn't do any of them very well but I got through them all. Here is a ten-day sample of what happened in our house this month:

• Dec 14th & 15th: Dad's been home two days, very weak. Home health (they came every day). Two very long rehearsals for me for Messiah. My 17-year-old cat had a seizure.
  
• Sunday, 16th: Sing at church in the morning, Messiah performance in the afternoon. Dad's siblings drove over from Houston.
  
• Monday, 17th: Put my cat to sleep and buried her in the back yard. I'd had her 15 years, since my first semester in law school. Cleaning ladies came to clean the house. I went shopping (not for Christmas, for my mom).
  
• Tuesday, 18th: Dad still feeling so bad he goes to the cardiologist and they admit him to St. E.
  
• Wednesday, 19th: Dad in St. E. I had a long church choir rehearsal in the evening for our Christmas concert. My mom, who usually goes to bed at 8pm, went Christmas shopping and didn't get home until 10:30p.m.
  
• Thursday, 20th: Dad in St. E. He got a pacemaker in the afternoon, anticipated but very suddenly scheduled. My church choir concert in the evening. I had a big solo so I couldn't really skip any of this. My dad made my mom leave him and come to my concert! (He was feeling better already.)
  
• Friday, 21st: Dad in St. E. Mom and I both got to go to Christmas parties in the evening.
  
• Saturday, 22nd: Dad in St. E. My brother arrived for the holidays. My mom went to Walmart AGAIN.
  
• Sunday, 23nd: I sang at church in the morning. Dad came home from the hospital.
  

Next post: Gearing up for the MP.

edema

Sometimes, I feel like this:


Doesn't everybody?

anthem

If any locals are interested, I'll be singing the Star Spangled Banner (with three good friends, in a quartet arrangement) for the little league All-Stars game this Saturday night. At least, I think it's for a little league All-Stars game. I'm supposed to show up at my friend's house at a certain time is all I know for sure!

edited to add: It was the West End Little League All-Stars vs. Amelia at Henderson Field, both the 9 and 10 year olds. And we sang purty!

another year older

As I begin my 39th year, it seems appropriate to ruminate a bit on the passage of time.

The most significant thing I've noticed about growing older is that time speeds up. A week just isn't as long as it used to be. It's simply a matter of proportion: when you're ten years old, a year is a tenth of your life; when you're 40, a year is 1/40 of your life, and it takes four years to make one tenth. At ten, three months is 1/40. Sounds about right.

My 20-year high school reunion is this summer, and I don't have a lot to show for those 20 years, just two university degrees. I don't have a career, or a family, or even a social life. That was all supposed to happen during the past decade, but I've had an illness instead.

They say life begins at 40. I think that the Marshall Protocol makes that a very real possibility for me. I'm hoping to start in early July, and that means that on my 40th birthday, I'll have been following the MP for nearly two years. By that time, I should be feeling better, and able to work and travel. My CFS will be well on its way to permanent remission.

But of all the symptoms I am looking forward to losing, the most exciting for me is brain fog. I would love to have a fully functional brain again.

Films this week

I do not normally watch lots of movies. This past week, however, has been an exception. In the last few days, I have watched:

• Ella Enchanted


• Pirates of the Caribbean: Dead Man's Chest


• Shrek the Third


• What the Bleep Do We Know?


• Eddie Murphy: Raw


• The Secret


• The Brothers Grimm

This may have something to do with the fact that my brother, who is a movie nut, was here visiting this weekend.

Wednesday

Better today, which is good because I have choir practice tonight.

Last week I lost an opal out of one of my rings. I was very annoyed, because I bought the ring from Australia, and although it isn't terribly valuable, I like it very much and don't see how I could get a stone matched to replace it. (There are three other identical opals in the ring.) Today I took everything out of my purse, and found the missing stone in the bottom of it. So now all I have to do is fix it!

Tuesday

Today I am running a fever and completely paranoid about catching a bug from my niece's future stepson, who was here (along with my niece and her fiance) for a visit yesterday. We had a nice quiet day watching Disney movies (note to self: must replace dozen-year-old VHS tapes with DVDs), and my dad smoked chicken and brisket, both of which were excellent (along with my mom's homemade cole slaw, potato salad, and apple pie-- yum), and taking walks around the backyard with our two dogs and my niece's two dogs. But the baby was sick, and got sicker as the day progressed. I've felt so blah today that I haven't been able to even think about doing something requiring a brain, like tackle the criticisms of the MP, as I promised earlier.

Sorry for the whiny post. Actually it took me all day to realize I have a fever, because I have one so often. So no pity, please! It's actually pretty normal.

I will try to post something more cheerful soon!

doublespeak

I went to a CLE this morning, on the subject of Family Law.  
Why do we call it  "family law" when it destroys families?
Shouldn't we call it "anti-family law"— or, here's a novel
idea: "Divorce Law."

(I don't practice divorce law, but I have to get in a certain number of CLE hours, and this is what they were offering this month.)

Recognized quite a few people there, made some new friends, and noticed a preponderence of western boots with suits.  I pulled my boots out of the closet when I got home and dusted them off.

crummy old shoes

I have a pair of crummy old slip-on shoes that I keep by the back door, so that I don't get splinters in my feet from the deck or step on a pinecone or something less fun.

Earlier this week, I went far out back with the dogs, wearing my comfy crummy old open-back shoes. I was admiring a blooming oleander by the back fence when I noticed ants. On my feet. Ouch.

This is not all that unusual an occurrence, and what I normally do is leave the shoes outside for a few hours until the ants have lost interest and vacated the shoes. So that's what I did. A few hours later, I checked them, but there were still ants on them, so I left them. Late that night, I went out to get them, and noticed a puddle on and around one shoe. That's right. One of the dogs had peed on it. I guess I left it too close to a plant or something. At any rate, it was 11pm and so I left them there, planning to deal with it on the morrow.

Next morning, I went out to get them, intending to throw them into the washer, and the OTHER shoe had a pile of dog poo on, around, and IN it.

Who knew a dog could aim so well with his poop?

There they sit still.