Archive for the ‘Meta-blogging’ Category

This will be an encore Sunday Post, from July, 2007. I learned yesterday, from Lois Lane, that Old Hoss (Gene Maudlin) passed away. I went looking here for times that I’d linked to him, and I thought this one would be as fitting a tribute as I could find. Rest any way you choose, Hoss:


“You can’t have a light without a dark to stick it in.” –Arlo Guthrie

John 12:46

Oh, and I just remembered something I wanted to share with you. This past week, as I was out visiting, I came across Old Hoss, making perfect sense (I know; I couldn’t believe it either!). Worth reading.


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Rearview Mirror

It’s not easy coming up with a “year in review” post title that hasn’t been done to death. So yea, rearview it is.

Looking back, quite a lot happened here this year, especially for a place where not much happened. I mean, I simply didn’t write much in 2008. And yet…

Early in the year, I got stoopid and ventured into online dating.

Not long after that, firmly pinned to the mat by WTF Disease, I announced my retirement from blogging. And I stuck by that until and unless, I’d get so pissed about something that my fingers just wouldn’t be still . . .

Like early in the summer when I worked really hard on a motherfucking children’s party. I must say, I enjoyed that little slice of profanity pie.

And so I was delighted to see that my muse from the previous link was featured in a national magazine with his motherf… well, with his mother.

Then, in late summer, at long last I found and shared what is the most likely culprit as a diagnosis for WTF. I continue to suffer many symptoms, and continue to pursue the treatment I began back then. I am told that it may take years.

Politics played an unusually prominent role here at WWIT this past year. Perhaps my most controversial post, and the one that invited the most passionate, provocative comments was my defense of underdog Sarah Palin. I reread those comments today, and I find that I still appreciate them; and I find that I still hold the preference that one actually READ my post(s) before commenting.

Finally, in the twilight of the year, I shared my dissenting view of the hot cold one. I have since seen the movie, and I really liked it. And I really stand by everything I said about that sucker.

Tonight we will stay in, and eat and drink good bad things, and play games and watch Times Square on TV. I hope that wherever you are, and whatever you’re doing, you feel warm and loved and optimistic. And if you’re a resolution-maker, I wish you well with that. I’m kinda not; but I’m also kinda thinking about making one or two this year. Or maybe just changing some things and then announcing them, rather than announcing first.

I thank you for being here. You add much to my life. I offer each of you an imaginary gift for the new year, inspired by one of my favorite comedians, the late Mitch Hedberg:

I’m giving you a self-help book. It has all blank pages and a pencil.

And this quote from Edith Lovejoy Pierce:

We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.

Let’s write this one well, dear friends.

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OK, that is what my husband just said, while I was trying to think of a name for this post. They’re baking potatoes, and they’re in the microwave wrapped in plastic. (Don’t judge me.) It’s a post about quotes, and that is a quote, and it’s not one you’ll read anywhere else.

I liked giving you quotes last Christmas, and went looking for some for this year. One long “credo” seemed just right for now — it has children of the world, faith, hope, and unity:


At Christmas time I believe the things that children do.

I believe with English children that holly placed in windows will protect our homes from evil.

I believe with Swiss children that the touch of edelweiss will charm a person with love.

I believe with Italian children that La Befana is not an ugly doll but a good fairy who will gladden the heart of all.

I believe with Greek children that coins concealed in freshly baked loaves of bread will bring good luck to anyone who finds them.

I believe with German children that the sight of a Christmas tree will lessen hostility among adults.

I believe with French children that lentils soaked and planted in a bowl will rekindle life in people who have lost hope.

I believe with Dutch children that the horse Sleipner will fly through the sky and fill the earth with joy.

I believe with Swedish children that Jultomte will come and deliver gifts to the poor as well as to the rich.

I believe with Finnish children that parties held on St.Stephen’s Day will erase sorrow.

I believe with Danish children that the music of a band playing from a church tower will strengthen humankind.

I believe with Bulgarian children that sparks from a Christmas log will create warmth in human souls.

I believe with American children that the sending of Christmas cards will build friendships.

I believe with all children that there will be peace on earth.
— Daniel Roselle

(If you can share other traditional beliefs of the season, please do, they’ll be most welcome.)

My favorite printed message on a Christmas card this year was on the card sent by my sister, Squirl, and I was tickled to see that the card was made by a fellow blogger, Tiffany, at www.electricboogaloo.net. The message:

“May your holiday season be filled with all of the things that bring you joy. You know, like reindeers or whatever.”

Tonight I am quietly celebrating with two good people and a bad dog, the birth of the One whom we believe is our Savior. I hope you are joyfully celebrating something, and that you know you are loved.

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Here we are again, friends. Welcome to the 4th Annual Blog Cookie Exchange! If you’re new, here are the basics for participating in the exchange:

Favorite holiday recipes
Special traditions
Favorite gift to give
What you wear when you don your gay apparel 🙂

But really, you can write or post pix of anything that tells us how you celebrate the holidays, or your favorite memories, or your wishiest wishes or scroogiest bitches.

Thanks to hand and arm trouble from WTF Disease, I’m afraid I’m not the hostess I once was, but you are most welcome to share all that I have managed to pull together.

Easy Reindeer Cookies

Susie’s Cookie Q and A
Q: Seriously, could these cookies BE any cuter?
A: No.

Nor could they be any easier. These days I am all about the rather impressive, but really, really easy. Like these reindeer cookies. Here’s how we roll:

Take a roll of store-bought cookie dough — sugar, peanut butter or ginger bread, and add 1/4 cup of flour (to make it roll out easier), and roll it out to about 1/4″ thickness.

Cut out the reindeer head shapes, using a bell-shaped cookie cutter. (An upside down heart-shape would work fine, too, don’t you think? OR, shape the long roll into a three-sided cylinder — kinda pyramiddy — and then cut it into 1/4″ slices.)

Use mini-pretzels for antlers.
Use M&Ms or chocolate chips for eyes.
Use M&Ms or Red Hots for a nose.

Bake at 350 for 12 minutes.


And I know I’ve shown you this before, but I don’t think I’ve told you how to prepare it:

The Fascinating Pinecone Cheeseball

pinecone cheeseball

1 (8-ounce) container garden vegetable cream cheese*
1 (8-ounce) container roasted garlic cream cheese**
1 cup (4 ounces) shredded sharp cheddar cheese
3 scallions, finely chopped (use both white and green parts)
2 cups pecan halves, toasted
Fresh rosemary sprigs (or sprig of pine)

Stir together first 4 ingredients. Shape into an oval (pinecone shape); chill 2 hours.
Arrange pecan halves over cheese oval, pressing in lightly in overlapping rows, beginning at bottom and working upward. Arrange rosemary sprigs at top of pinecone. Serve with crackers.

*If Garden Vegetable cream cheese is not available, may use plain cream cheese with ½ packet of Knorr vegetable soup mix.
**If Roasted Garlic cream cheese is not available, may use plain cream cheese mixed with 2-3 cloves of crushed, roasted garlic.


We were invited this year to join a long-standing tradition of some distant friends of ours.

“distant friends”= we really like them, and think we would like them even better if we got to know them more, and they seem to feel the same about us, but we don’t see them enough for that.

Their tradition is a Carol Party. You take a small house, fill it with friendly people, a few of whom have actual musical talent, the rest of whom like to hang around people with actual musical talent (I belong to the latter group), add a couple of guitars, a keyboard, an impressive variety of percussion instruments and a box of kazoos, plus some drinks and cookies and a bunch of photocopied Christmas song lyrics, and there you go. It really was fun. Until they got to “O Holy Night.”

That is (or was) my favorite carol. I know people make fun of it, but doggonit, I like it. Even — or especially — the “fall on your knees” part. When the orchestra swells, and the choir goes all forte — it’s thrilling. And it’s real. I mean, think about what they’re singing about. If you were THERE, back in the day, and you saw that amazing star, and then you saw and heard a bunch of angels (ANGELS!) up in the sky singing at you . . . are you gonna tell me that wouldn’t knock you right on your ass? OK, then. But they can’t really put “knock you on your ass” in a church song, now can they? So, yea, fall on your knees indeed.

Back to the party. When it came time for “O Holy Night,” the host says all the men have to get together. So it’s men in the dining room, and women in the adjacent living room, and we start to sing. But, as is the tradition at this party, the men put their arms around each other and do a can-can to this song. (Except Jif was new, and never having been part of an all-male line-dancing holiday revue, he thought they were trying to do the Munchkins’ Lollipop Guild dance from the Wizard of Oz, so his moves were a little. . . spastic.) And then, at the “fall on your knees” part, they all did. And it just continued to deteriorate from there. Not pretty. Nor festive.

So, I don’t know, I may need a new favorite Christmas song: this one would be a contender. I really love it.

My favorite gift to give this year is a toffee apple, from here. I had hoped to post photos, but we’re slow here, so they won’t be in our possession until this evening. Maybe I’ll slip a photo in later. One of my students gave me one of Lisa Anne’s toffee apples last year, and it was so amazing we went right out and bought a few to give as gifts. This year, we’re buying a few more. The thing is, I’m not a big apple person. And I really don’t like candied apples — waste of a perfectly good fruit and perfectly good candy, I would have said. But Lisa Anne converted me. Huge, tart apple covered in high quality caramel, toffee . . . YUM. And the large size, I unapologetically gave one to a family of seven, and they each had a dessert slice and some left over. The coating is so thick and rich, just a little goes a long way. So, yea, I think you’d like them.

This might be a good place to say thank you to everyone who reads here, comments here, and to those who write on your own blogs. Just a few years ago, I was a big internet cynic. I did not trust that enough people were real enough on the internet. And yes, since I have trusted cyberpeople, I’ve gotten scorched a time or two, but mostly I am thrilled and delighted by how much more of life I have learned, that I could not have learned, had I not met you all online. You make my life richer. You even help me like myself more. You make a horrid illness easier to laugh through. And now you make me cry a little. In a good way.

Merry Christmas, dear friends.

Now gimme some cookies!

If you have a blog, I hope you’ll invite us in for your holiday post (and if today isn’t good, put it up when you can, we’re easy like that). Leave a comment to let us know, and please, visit the people who leave comments. If you don’t have a blog, share your holidaying here in the comments.

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Just a little late this year, but yes, we’re doing it again! The Fourth Annual Blog Cookie Exchange will be held next Wednesday, December 17. A review: here was last year’s party, here’s what it looked like two years ago, this is what happened the very first time.

The tradition was born out of a wish that we “imaginary friends” could enjoy the holidays together. We’d love to share some holiday cheer in person, but since we can’t, this is the next best thing — a virtual holiday open house. Allow me to cut and paste from prior invitations — Here’s how it works:

Start with some variation of:

Favorite holiday recipes
Special traditions
Favorite gift to give
What you wear when you don your gay apparel 🙂

and/or anything else you’d like to tell us about your holiday celebration. As is the custom here, there aren’t many rules. Whatever you’d like to share is fine — carols, stories, decorations, something new that you’re trying this year, whatever. Here it’s Christmas, but all holidays are welcome. If you don’t celebrate ANYTHING, then your grinchy scroogey ass can just fake it for one day, for goodness’ sake! Make something up! And you don’t HAVE to include cookies, if cookies aren’t your thing. It’s just that “Cookie Exchange” has a nice, Christmas ring to it. Better than, say, “shindig” or “hootenanny,” although it may turn into either or both.

If you don’t have a blog (what?! why not?!), stop in next week and leave your contributions in the comments. If you DO have a blog, leave a comment here next Wednesday on the Cookie Exchange post, and we’ll all come to your party, too. You won’t gain any weight, and you won’t need a designated driver! So here’s the deal, again. We wanna come to your place and eat your cookies and rummage around in your things and stuff next Wednesday. (Oh, and do post an invitation at your place, if you’re so inclined — everyone is welcome, the more the merrier!)

Oh, and one new thing I hope to attempt this year, weather and health permitting — I want to show and tell some things about holiday attractions in my hometown. You know you have some, too. SHARE!

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Last year, I proclaimed it an official tradition, and much to my happy surprise, I have had email requests for it this year. So here are the turkeys again.

And just so’s you know, I’m OK. The treatment on which I’ve embarked is a curious thing. I had about three days in a row last week where I felt pretty darned good. That was following some really bad, feel-like-giving-up days, on one of which I fell on the concrete floor in my basement. As I tweeted to my twitter pals: I smashed my right knee and hip, then my left shoulder, because apparently, that’s just how I roll.

I’ve been trying to write a WTF update post, and I will, rather soon. It’s just that there’s so much that’s happened. And one of the features of WTF Disease is what those in the know call “brain fog.” It’s hard for me to string ideas together sometimes. It’s hard for me to find right words, and spell them, use them properly. I imagine it’s like being hit with a sudden, acute case of Attention Deficit Disorder plus an expressive language disorder. Quite out of my comfort zone. But then, so is the rest of WTF. I’ll say more about it soon. I’ll even show you my humongous bottle of drugs. It’s impressive, truly.

But without further ado, to-do, who-do, voodoo, I give you the turkeys:

turkey farm

Across the hall from my office is what I believed to be a daycare center. Turns out, it is some sort of work-release program for 3- and 4-year-olds, from which they operate a turkey farm. As you can imagine, it’s been a busy place this week. I’ve dealt with a turkey or two in my day, so I thought I’d take a moment to offer some last-minute turkey selection guidance, with a little help from my turkey-raising friends across the hall.

Do look for:

good bird

A plump, confident bird that will look you right in the eye. All parts should be . . . “in the ballpark,” so to speak.


visually challenged turkey

A bird that appears intoxicated, or just effin’ goofy. You don’t want that.

inverted bird

The upside-down turkey, with crossed legs and shifty eyes. May also exhibit a paranoid demeanor. This bird will NOT digest easily.

ingrown turkey

Watch for the inbred turkey. Its feathers and legs tend to grow inward. Also be leery of turkeys with excessive glue or other miscellaneous white liquids dripping from their beaks. You just don’t know where a turkey like this has been.

afflicted turkey

This is the “WTF” turkey. Any bird that elicits, as your first response, a startled “WTF?!” is to be avoided. Just say no.

If you’re here reading this, you’re probably old (as opposed to a first-timer). I remain thankful for your online friendship, and your continuing to stop by when not much of anything new is going on here. I wish you a lovely thanksgiving, and hope your brain grows weary of thinking of all the many blessings you have, for which to give thanks.

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You’re not really reading this, because I’m not really writing this, because both my husband and I agreed that it was inappropriate. So, even though it’s too inappropriate for me to write, it IS something you would have overheard IF you were hanging out with us.

Susie: So, I’m looking at my blog stats today, at the search terms people used to get here, and somebody got here by searching “I’d fuck Biden.” Just one person got here that way. Then I wondered what other sites people get when they Google that search term, so I Googled it, and guess what?! Nothing. Nada. Zip. I am the one and ONLY! All thanks to William! (Jif already knows that William proclaimed his intentions toward Biden in the comments of the previous post.)

Jif: Only one person? I’ll bet it was Biden!

Susie: (guffaws) Yea, he Googles that every day, just to see what opportunities might be out there…

Jif: He’ll be showing up here next week.

Susie: Wait (laughing hysterically and pretending to look out the window), here comes a Secret Service motorcade down the street!

Jif: Tell William, thanks a lot, Biden’s sitting in our driveway, now.

Susie: Say it ain’t so, Joe! Doggone it!

We’re both cracking up; my stomach is hurting and I can’t breathe for a second.

Susie: Ohmygosh, I have to blog that. No, I can’t write that, it’s too horrible. But it’s so funny. But it’s too horrible…. Isn’t it?

Jif: Yea, you can’t say that.

So, I’m not going to say anything. The only way you would ever know about Biden Googling and stalking and whatnot, is if you were hanging out here and overheard it. (Jif just went outside to redirect him to your house, William.)

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First, something fun. It’s absolutely the most fun you I can possibly have right now.


Biscuit's granny

Some flickr friends and I have been enjoying this site for a while now. Hours of playtime.

Also, I’ve been meaning to talk to you about something. Quite a while ago, in discussing WTF with my therapist, I said something like, “I still don’t know what God wants me to learn from this. I know what’s important, I know I’m not in control, I know to count my blessings and be thankful . . . I don’t know what I’m supposed to be learning.”

And she said something like, “What makes you think it’s you who’s supposed to be learning? It may be that the lesson is for someone else in your life, or someone who’s seeing you as you go through this, and how you deal with it. The lesson isn’t always for us when we’re going through something.” Hmmm.

So, just on the off chance that one of you who read here is supposed to be learning something from WTF, would it be too much for me to ask that you PAY ATTENTION!!! Let’s hurry this along, SHALL WE???!!!

There. That’s all I wanted to say. Now go yearbook yourself!

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At long last. Rather than trying to write you a post, I have copied a letter that I’m sending out to interested IRL friends. As you’ll see, I have no idea whether this is legit, nor where it will lead, but here we go:

Dear Friends,

I’m sending this out to all those who’ve been aware of my health struggles over the past couple of years. It appears there may be a diagnosis, and the beginning of a long road of treatment. It is all tentative, and controversial. I am normally a very private person, but I wanted to share this information because it may be of help to someone else. As I have learned, much to my sad surprise, there are many, many people who are suffering with strange symptoms that go undiagnosed and untreated. I feel certain that someone reading this will know of someone who may benefit from what I’ve learned.

Let me also say that I am not sending this out as some medical activist or advocate. I have no way of knowing, at this point, whether the information I will share at the end of this letter is accurate, or whether it is a product of medical charlatans. I simply don’t know. This is just my story. If it can be of some help to someone else, that is a very good thing.

A brief recap of my symptoms over the past 2+ years: first, beginning in
October, 2005, kidney stones. I cannot say whether they were related to my current illness, but I do know that since the treatment for them, in March of 2006, I have not been well.

Initially, I had a low-grade fever for over 6 months. Gastrointestinal
symptoms; rapid weight loss, accompanied by bloating; difficulty swallowing, then difficulty speaking. I felt that I was choking all the time, a feeling that I still have. I was lethargic for weeks, and could not wake up after sleeping. I felt as though I were heavily drugged, although I was taking no medications at all.

Next came neuromuscular symptoms. In the summer of 2006, I began noticing that my hands would “freeze” into claws if they’d been in a certain position for even a few seconds — grasping the steering wheel, carrying a purse (this is one symptom that has entirely resolved; it happens very rarely if ever, now).

Then, while taking Lily and a friend out to lunch after vacation bible school, I became stuck on the sidewalk. Couldn’t move my legs. When I was able to move, after several seconds, I couldn’t raise my arms to open the door. Terrifying. Following this episode, I’ve had muscle weakness in arms, legs, throat, tongue and neck, that continues through today. The weakness ranges from a tired feeling, to the inability to carry a dinner plate to set the table, to having to put the car in “park” at a redlight because my leg is too weak to keep the brake pressed down for the duration of the light.

I went through several months of stumbling and fell down a number of times. Thankfully, although some level of weakness is present daily, I haven’t had a bad fall for nearly a year, now.

Throughout the late summer, early autumn of 2006, my hair began falling out. On my pillow, in the shower, left on any upholstered chair I’d sit in, all over my clothing. My hairdresser of 20 years, who knew I hadn’t been well, told me later that she assumed from my appearance that I’d been undergoing chemotherapy, due to the thinning of my hair, followed by the fuzzy new growth.

Also during this time, my ribs became terribly painful. So much so that I couldn’t sit in a hard chair, or a church pew. I’d wake up with a yelp at night, from having rolled over and been hurt by the pressure of the mattress or my own arm. This symptom comes and goes, to this day.

In January of 2007, the twitching began. This, too, persists through today. Sometimes it’s minor, like most people experience from time to time — an eye twitch, a thumb twitch. More often, though, it’s almost violent — I can watch muscles — biceps, forearms, thighs — jumping for minutes at a time; it’s sometimes painful and always tiring.

Just after the twitching came the pain. It started in my arms. I don’t even know if it’s considered muscle pain, nerve pain, or what — it feels like my bones hurt. I can’t count the times that John and Lily have microwaved a heating pad for me to wrap around my arms while I sit and cry. The pain was confined to my arms for a long time, but now I think of it as my entire skeleton hurting. Mornings and late at night, my spine and hips are very painful. I have never been much of a sleeper, but now I am awake sometimes for three and four days at a stretch, not always from pain, sometimes just from unexplained insomnia.

I’ve had periods of confusion, the inability to recognize my own street, loss of vocabulary. Just after Easter of this year, I developed tinnitus. Sometimes the ringing in my ears is simply background noise that I have gotten somewhat used to; and sometimes it is so loud I cannot hear the television or participate in a conversation.

At last count, I had seen over 20 doctors. I lost count of the tests and various procedures I’ve had. The only things that showed up irregular in all the testing were a couple of nutritional deficits, and nothing that would account for these symptoms. There were speculations of MS, ALS, many neurological disorders, viruses, autoimmune disorders — nothing seemed to fit entirely.

I was tested at least three times for Lyme Disease. Tests were always negative. I have no knowledge of having been bitten by a tick, never had a bullseye rash, none of those things that one associates with Lyme Disease. Over the past two years, I’ve been offered enough drugs to open a pharmacy, by people who (like most doctors, it seems) were willing to medicate my various symptoms with no understanding of their source. I’ve been offered botox injections in my throat, and a procedure to stretch my esophagus, in an effort to ease the choking — again, with no diagnosis. I declined all of these treatments, because I remained convinced that someone, somewhere, would know what was wrong with me, and I feared that medicating specific, isolated symptoms would make diagnosis even more difficult. I did receive acupuncture treatments for about 8 months. They did no harm, and sometimes offered temporary relief of stress, if nothing else. But I was not getting better.

Finally, several months ago, I gave up. I was tired of telling my story to new doctors. I knew that literally hundreds of people were praying for me, and that would have to be enough. I figured I’d either just get better, or I’d get much worse so that someone would finally recognize what I had, or I’d stay the same and learn to live with it one day at a time, as I have been doing.

Then, in the spring of this year, I started getting emailed newspaper articles from people who knew of my story. One person was even kind enough to scan entire chapters of the novelist Amy Tan’s book, in which she recounted her 7-year struggle with an illness that sounded very much like mine. Someone John knows sent him a link to information about a film that I will give you here. All of these articles, books and film are about Lyme Disease. The illness that some docs had suspected, but for which I’d consistently tested negative. I learned from the new information being sent to me that there is a small, but growing medical community (called “lyme-literate” docs) who believe that the standardly administered tests are unreliable, and that the diagnostic guidelines established by the Infectious Diseases Society of America (IDSA) are inaccurate and inadequate. They also believe that many, if not most people who have Lyme Disease never experience the bullseye rash, and have no knowledge of having been bitten by a tick.

All of this time, I had dismissed the possibility of Lyme Disease, because of the negative tests. No one told me they weren’t reliable. With this new information, I found a local doctor who is lyme-literate, and went to her. Because she practices outside the scope of accepted standards, she does not accept insurance (or perhaps more accurately, they do not accept her). And she sent my blood to a lab in California that is not covered by my insurance.

Yesterday I went to her for results. Most tests came back negative. One, for the presence of protein that would indicate Lyme infection, came back positive — by the standards of the International Lyme and Associated Diseases Society — the folks who call themselves “lyme-literate.” By the standards of the IDSA and the CDC, my results are negative, falling short of their diagnostic criteria. The doctor said she is absolutely certain that I have Lyme Disease.

I do not know. But I have decided, with some apprehension, to begin the course of treatment that she recommends. For now, it is massive doses of various antibiotics, plus supplements to help counteract the negative effects of the antibiotics. For now, the treatment is oral, although she has advised me that daily IV antibiotics are not uncommon during the course of this type of treatment regimen. More antibiotics will be added over the course of several months or (God forbid) years. She says to expect at least 8 months of treatment. No traditional practitioner would approve 8 months of heavy-duty antibiotics, for a diagnosis that can’t even be confirmed, as far as the mainstream medical community is concerned. It’s very confusing and confounding to me. I am not one to take unnecessary medications, or any kind of medications, if I can avoid it. But I’ve lost a lot of time, and a lot of my life. I’ve missed activities with Lily, time with John, vacations, important family events, good times with people I love. I’ve had to close a private practice it took me years to build. I feel it’s time to take this risk.

I won’t go into all the reasons that it’s a bad idea to take antibiotics you don’t really need. The short version is, I’m likely to become more ill, in some respects (last night, the nausea was horrendous from my first dose), and the risk of becoming immune to a number of very valuable antibiotics that I may need in the future — particularly if it turns out that I actually do have one of the neuromuscular diseases that has been speculated. I have always been prone to pneumonia, and there are hundreds of documented cases of people who were treated by lyme-literate docs, who did not recover from their illness, and later died from pneumonia because the antibiotics that should have cured them had been overused. All that to say, this is not an easy decision, nor one that I make lightly.

If you have been praying for me, I thank you from the bottom of my heart, and ask that you will continue just a bit longer. Pray that John and I make wise decisions and get good counsel, and that I get my health back. As most of you know, this time has been very tough on John and Lily. In many important ways, they’ve been living with an entirely different person than the one they knew up until two years ago.

If I haven’t already overloaded you with information, here is a link to a YouTube clip about a film recently produced by Lyme Disease activists. I saw myself in many of the stories in that film:

Lyme Disease movie YouTube clip

And here is a link to the website of the film, where there are links to much more information:

Under Our Skin

Oh, one more curious bit of information. As many of you know, I searched for a year or more to find some link between my progressing illness and the lithotripsy treatment for kidney stones. I could not escape the belief that I was fine (except for the stones) before that, and sick as hell after that. My doctor says that in her experience it is very typical to see someone who has carried Lyme Disease for years, but only manifested symptoms after the body experienced some sort of traumatic event. She said it is often a minor car accident — she cited someone who was rear-ended in an accident that caused $300 worth of damage, as an example of how minor it could be. She believes that the lithotripsy may well have been that kind of trauma for me, that weakened my immune system and triggered the dormant Lyme Disease to overtake it. Is this medically, scientifically sound? I have no idea. I do know that before the lithotripsy, I was well, and since then, I have not been.

If you know and love someone who has persistent, unexplained symptoms — and they could be in absolutely ANY system — digestive, neurological, endocrine, rheumatological, ANYTHING — it may be worth getting tested for Lyme Disease. Short of going to a lyme-literate doctor, people should ask their family docs for the Western Blot test — it is covered by insurance, done by standard labs, and (I’m told) more accurate than the tests that are usually ordered to rule out Lyme Disease.

Thank you for “listening” here and for your prayers. You’ll never know how much they’re appreciated. I absolutely do believe they are working — not on my timetable, or in my ways, but then . . . Isaiah 55:8-9.

Susan (Susie, Sue, depending upon who I am to you!)

P.S. This just in! The IDSA is apparently willing to take another look. Those of you who are docs or know someone who is and might be interested in this topic, please pass this on:

a call for doctors to be on a Lyme Disease guideline review board

So there you have it. When I write my book about WTF Disease, I will dedicate it to you, Ratsasstafarians. I wish I could remember all those of you who’ve suggested Lyme Disease. And when you did, especially early on, I thanked you and told you I’d been tested and that wasn’t it. I know there was John, and Karen and I certainly know Amy, whose sending me that Amy Tan excerpt (in which I felt I was reading about myself) gave me the energy to try one more damn thing.

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LG has an Iranian friend, a little girl called Parastoo. That’s her real name; concerned about privacy, I Googled, and it’s a very common Iranian/Persian name, so no secrets revealed here. Parastoo and her family are Muslim.

We live in a very culturally, racially, religiously diverse area. We sought this area out, as part of our … “parenting plan,” for lack of a better term. We think it’s good for kids (and adults) to learn to live comfortably and well with those different from them (they? we’uns?). Neither my nor Jif’s family of origin would necessarily support or even understand our thought processes on this matter.

LG’s science teacher is a very cute young man. I suspect he’s also a rather lazy young man, because he is a big fan of the dreaded group project. Assigning four students to a group project cuts his grading time by 75%, if my middle school math serves me here. So, recently, LG, Parastoo, Allegra and Sara were put together to do a group project. Much to my dismay, these group projects must always be worked on outside of school. This means that the parents of these 12-year-olds must host, transport, etc., in order to facilitate the completion of the project.

On a recent “professional day,” a Friday with no school, LG’s little group arranged to meet at Allegra’s house from 11 a.m. to 3 p.m. I’m not a big fan of the group project, probably because my child’s temperament is much like mine was at her age. That is to say, she is unassertive to the point of not preventing others from taking advantage of her, and grades are important to her. This translates into her doing whatever is required to get a good grade on the project, regardless of what the other group members put in/put out or don’t. The other thing about these group get-togethers is that they’re unproductive. They are, in truth, the equivalent of tween playdates, where not much gets accomplished, and the group will invariably end up scrambling to complete their project via phone, email, stolen moments before school, and the like.

Still, I did my part. I went in one direction to pick up Parastoo, while Allegra’s mom (you met her here) drove in the other direction to pick up Sara, and all convened at Allegra’s house. Four hours later, I arrived to pick up LG and Parastoo. Allegra’s mom, whom I actually like, whom I believe has a good heart (but who has apparently no authority over her child, never has had, and I can see why, but that’s a post for another time), took me aside before she called the girls up from the basement project center.

“I need to let you know there was a little accident,” she says, conspiratorially.

This, this is not a thing I like to hear from this woman. “Oh?”

“The girls were working on the computer and Allegra didn’t want LG to ‘enter’ something she was about to enter, so Allegra went to stop her and accidentally elbowed LG in the nose.”

Accidentally? When trying to physically prevent LG from doing something?

She went on, “LG’s eyes watered, I know it really hurt. I told Allegra to apologize, but she wouldn’t. She said it wasn’t her fault. I tried to explain to her that while it wasn’t intentional, it was her responsibility, and even when we accidentally hurt someone, we apologize, but she refused . . . you know how they are . . . ”

I know how YOUR KID is. “Oh. [Subscribing to the “just say ‘oh'” school of getting along with your child’s peers’ parents serves me in good stead, most of the time.] Well, thank you for letting me know what happened.”

Then the girls come upstairs, after having slaved for four hours on their project, and they show me . . . nothing. They have “ideas.” I was not surprised. I was, however, surprised by Allegra’s next move. “Miss Susan,” she says coyly, brushing back her Emo bangs and smiling broadly, “since we have a lot more work to do, is it OK if we have a sleepover tonight?” WTF? Is it OK if you don’t try to break my kid’s face and then not apologize for it? Could she even survive a sleepover with you?

“No. I mean, it’s OK for you to have a sleepover, of course, but LG isn’t allowed to sleep over tonight. We have a lot to do, and she’s been here pretty much the whole day.” This does not sit well with Allegra. This word, this “NO,” it’s not one of which she has a firm grasp.

We take our leave, not a moment too soon. First, though, I speak to Sara, whom I’d never met before. I wave through the open storm door, “Oh, Sara, it’s very nice to have met you. I’d never met either you or Parastoo before today, even though I’ve heard nice things about you.”

Then Allegra’s mom calls out to Parastoo, already on the sidewalk with LG, “Oh, that’s right. I’ve never met you before, either. So nice to meet you, Saradoo.” SARADOO? The two girls left inside crack up. The two on the sidewalk look embarrassed. The one old chick on the sidewalk is stunned, but before I could react at all, Mama Allegra kicks it up a notch. “Oh, Susan, did you know that Sara here is Presbyterian?” No. Never met her, certainly never inquired as to her religious affiliation. Mama Allegra continues, “So I told them that these three [here she points a finger, swirling it around to indicate Allegra, Sara and LG] can get together and do Presbyterian things!”

Oh. My. God. I am certain, and I am not sorry, that I did not hide the look of shock and horror on my face. I turned to the little Muslim girl on the sidewalk beside me, who met my eyes and then looked at the ground. What in the hell are “Presbyterian things?” I looked at Mama Allegra, speechless. “I mean,” she stammered, “like going to camp, retreats, things like that . . . ”

“Oh.” Long, uncomfortable pause. “OK, then. Thanks for hosting! ‘Bye now.”

What is wrong with people? I swear, this is not the only parent of my child’s friends who is this clueless, this utterly insensitive. PRESBYTERIAN THINGS? WOW. What if we did, oh, say, Christian things? Like not being exclusive? Like practicing hospitality?

I do not know if I can get my child raised and launched without having the two of us become absolute social outcasts.

OK. Blogging is therapeutic. I know why this is all hitting me so hard, seeming so insurmountable. It just hit me as I finished writing this. The one and only mom I’ve met in this community who shares my values, my beliefs about raising kids, is moving. To the other side of the Atlantic. For three years. In less than a month. Oh, G. I will miss you and your family so. I’ve been blessed by your friendship. And I have no “replacement” for it.

And now, I’ll take my WTF-riddled, pneumonia-afflicted ass back into blog sabbatical. Until the next thing pushes too many buttons to ignore.

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