Life Is Swell

Nichelle has requested that I post a few photos to show the extent of the swelling she is dealing with. We actually have one or two photos that are worse, but she doesn’t want those posted.

Since the return of the fibromyalgia symptoms in force, about the time NaNi was weaned, Nichelle has battled rather significant swelling at various times. This winter, it became much worse. At best, the swelling is bad; typically it is horrible.

Note the dramatic difference in the leftmost photo with the middle photo. These were taken only two days apart, on December 25 and 27, 2005, respectively. These primarily show the face, but the swelling involves the whole body. On most days, the swelling is very significant, somewhere between the rightmost photo and the middle photo.

We are awaiting an endocrinology appointment in about a week. The previous endocrinologist to whom Nichelle was referred refused to see her because there wasn’t anything in her records to indicate an endocrinological problem (for the most part, until recently, the swelling hasn’t been our biggest focus). A cardiologist she visited told her, “Sometimes my patients have swelling in their legs and ankles when they return from cruises because of all the high-sodium food.” Our excellent neurologist was more perceptive. Nichelle had brought these photos in to show him—he was stunned. He also pointed out that the swelling alone can cause a great deal of pain.

Our voluntary medical advisor/patient advocate Beth suspects Cushing’s Syndrome or some form of hypercortisolism. So far, Nichelle’s symptoms are consistent with that, including stretch marks on the skin in many places, and swelling varying in degree at different times of the day.


Nichelle spent a couple of hours last night going through photos from the past three years. There are obvious periods lasting several months when the swelling was very bad, and times when it was mostly gone. In general, the very bad swelling lasted much longer than the times without. There’s also a clear increase, over time, in what we might call “base level” swelling, but even within that ever-raising baseline, there are days when it is worse than others, as the photos above show.

I had actually forgotten how much smaller she was even within the past year. No amount of exercise or dieting seemed to help, either. She lost 30 pounds (after Naomi was born) doing the South Beach Diet, and was intensely exercising for an hour every day. Neither one of these things prevented the swelling or the fibromyalgia symptoms from returning, and exercise is supposed to be a very effective long-term treatment for fibromyalgia.

I’ve created a new category on the BLOG for posts related to fibromyalgia. It’s available on the categories list at the right, or from the bottom of any post classified as such.

(See related posts: What’s Wrong with Nichelle?, The Twins Are Back: What’s Wrong with Nichelle, Continued, and Pain; or view all posts categorized as related to fibromyalgia.)

Geek Humor @ H0//3

Tonight I was reviewing science notes with Isaac (click-and-drag to highlight my answers with your mouse to reveal them):

Q: What’s the densest element?
A: Osmium (actually, it’s a tie between Osmium and Iridium)
My answer: Fifth graderum.

I also dug up Tom Leher’s famous “The Elements Song.” You can hear it attached to a clever Flash animation here, or download the MP3 yourself.

And we had some fun because Isaac couldn’t remember:

Q: What is the most commonly occurring transuranium element?
A: Plutonium.

… which led to me mimicking bits of Doc Brown (Christopher Lloyd) from Back to the Future.

Doc Brown: “I’m sure that in 1985 plutonium is available in every corner drugstore, but in 1955, it’s a little hard to come by.”

Then Isaac confounded me with this one:

Q: What kind of tree did the mad scientist plant?
A: Chemis-try!

So I added:

Q: And what kind of tree did his mathemetician wife plant next to it?
A: Geome-try!

Pain

(See related posts: What’s Wrong with Nichelle?, The Twins Are Back: What’s Wrong with Nichelle, Continued, and Life Is Swell; or view all posts categorized as related to fibromyalgia.)

Beyond the significant swelling, Nichelle’s life seems to be defined ever more by pain. On Valentine’s Day she had a “good day”—the pain was only mild for much of the daylight hours, and she enjoyed being able to do some work around the house. By suppertime, though, her pain had started to return. Walking became markedly difficult. By 9:00 or 10:00 the pain was steady and even more severe.

Tonight was particularly troubling. Nichelle was feeling pretty good until late afternoon, and was looking forward to attending the midweek Bible study. At 5:30, she announced that she needed to get dinner on and then take a nap. By the time I left work, she determined that she wasn’t going anywhere. By the time I got home to pick up the kids for church, she was having severe pain in her left leg, and remained virtually immobile during the two hours we were out at church, because she (and Nichelle is not one to exaggerate) was afraid if she got off the couch, she’d fall down and not be able to get up.

About the time the kids were being put to bed, the pain became extreme. She took two of the pain medications she has been prescribed, but normally does not use. They didn’t do much. The pain in one leg spread to the other.

Then the head pains started. These were awful.

For ten minutes at a time, over the space of more than half an hour, Nichelle is racked with sharp head pains that almost defy description. Every few seconds she convulses, stiffly curling up, and manages somehow to stifle her cries of agony. Tears well up in her eyes. Her breathing becomes rapid. For a few minutes these pains subside, and then they return.

I kneel beside her, gently clutching her hand, my own body heaving with sobs I cannot control. “I love you,” she whispers quietly when the pains relent for a few moments. I weep even more.

After what the clock says is only an hour, the stabbing pains have passed. Nichelle sits up for the first time all evening.

Perhaps the rest of the night will bring some degree of comfort.

Editor’s note: Thankfully, attacks this severe don’t happen every day, but they do seem to come a couple of times a week, and similar attacks of lesser severity do come every day. The tiring, debilitating pain is there almost always, though. Nichelle took the kids to Wal*Mart on Monday night, for a very quick trip. When she got back she said, “You know, there’s no way I could make it through the [grocery] shopping.” (I knew that—it’s why I’ve been doing the grocery shopping for the past few months.)

Keywords: Fibromyalgia, swelling, severe pain

Waste!

Am I wrong, or does this strike more of you as pointlessly wasteful?

Happy Birthday Dear Fido, Fluffy and Polly
Tue Feb 14, 2006 08:23 AM ET

LOS ANGELES (Reuters) – They already have their own designer clothes, health insurance and therapists. Now more and more American pets are enjoying their own birthday parties.

A surprising number of pet owners host birthday parties—complete with party hats, cake and guests–for their dogs, cats and birds, according to a survey released Monday by California-based Veterinary Pet Insurance.

The firm reported that 58 percent of its policyholders who responded said they had hosted birthday bashes for their pets.

Veterinary Pet Insurance, which marks the occasion by sending each insured pet a birthday card every year and a coupon for free food, said other surveys have calculated that about six million American dog and cat households celebrate birthdays.

Three Dog Bakery, a specialty store in upscale Newport Beach, California, gets about 20 requests a week for pet birthday cakes, said owner Sandy Deem.

© Reuters 2006. All Rights Reserved.

I have nothing against pet ownership, but it seems to me that when one is at the point of having birthday parties for pets, it’s time to evaluate spending habits. Imagine how many orphans the costs of six million birthday parties for pets would feed, clothe, and house annually, or how many missionaries the money could support.

Don’t even get me started on pet psychotherapy …

Witness the Evidence, Ye Doubters

I wrote this in an earlier post:

We have been leaving our sleds out most of the winter as offerings to the snow gods. So far it has been working, although I had to correct the kids on making the proper offering. Scattering the toboggans about the yard is not the way to get the snow gods’ attention: One must place the sleds vertically, up against the deck or porch railing, as if ready for instant use. You don’t want to get rain all winter, do you?

I offer hear clear photographic evidence that such beliefs are indeed rational:

Above left: Our offering to the snow gods, carefully placed yesterday morning.

Above right: The same scene less than 24 hours later.

Naomi’s Stories

NaNi is indeed a delight. She’s started to put together stories. Last night she said, “See Uncle Phil. Rocket ship. Knock, knock, knock.” (You want to visit Uncle Phil, and you’ll take a rocket ship to get to his house, and knock on the door?) “Yes!”

She’s always been fascinated with her clothes that have pockets. Just before bed she had her hands in her pockets, and sighed, “No money.” I laughed. “Two pockets,” she announced. She’s learning how to identify quantities.

Earlier tonight the little weasel was trying to get into my pocket. Are you trying to get my wallet? “Yes, Daddy.” “Why?” She jumped up and down with glee: “Credit cards!” Sometimes she’s too smart.

Caption this Photo (of Naomi)!

We took this picture during David’s seventh birthday party. Nichelle’s suggested caption is below. Can any of you beat it?

“What do you mean I’ve had too much sugar?”

Now, let me go reserve a therapist for NaNi.

Isaac, the Biographer

Isaac is now in fifth grade. He wrote this biography of Naomi for one of his homework assignments:

My Sister, Naomi

My little sister, Naomi, a cheerful little girl. Being two years old, she has different rules of posession: “If I saw it, it’s mine,” “If I didn’t want it, and saw you playing with it, it’s mine.” And Naomi’s special, “Every loli-pop I see is mine.” Naomi likes to sing along with many songs: “Jesus Loves Me,” is one of them and all the songs of “Charlie and the Chocolate Factory.” She is very bouncy, loud, cheerful, and her vocabulary is very good. The day after her [second] birthday she greeted my dad with a “Hi, Slacker!” She constantly stands on objects and says “Look, I’m taller!” I’m glad to have a sister as Naomi is.