Ballet In The Park

Dear Knittah,

Last Thursday Noricum, H & family, and I went to Ballet In The Park. This is an annual event in Winnipeg put on by the RWB (Royal Winnipeg Ballet) professional school. Most of the ballerinas are from the school, but some are also from the RWB itself. It's quite enjoyable! Thankfully there were no mosquitoes, although there was some sort of tiny hopping bug that was present in sufficient quantity to be a nuisance.

It was also nice that I got some admiring comments from the lady sitting next to us.

Love,
Swatchy

PS: Noricum is getting worse at getting both me and the other subject matter in the same photo frame.

PPS: Noricum also recorded a tiny clip of the ballet with her camera. Well, she recorded several, but this was the most interesting.

La Grande Jatte?

Ok, not quite La Grande Jatte. More, a Sunday Afternoon at Belle Haven. Which is pretty darn nice anyway.

Eliza and I had a lovely picnic with our friends Kirwan, Carla, Kirwan's mom, and the girls--Grace, Lilia, and Caroline. The breeze off the river was delightful, and I was pesticide-free and yet didn't get a single mosquitoe bite (yes, Knittah, you can yell now).







The girls and I enjoyed exploring the river:



...while Kirwan's mom and Carla discussed deep thoughts:

Sweeping up

A fellow hiker from the Scotland trip shared some photos with me that relate to some earlier posts. With many thanks to our group's Uber Photographer, I share them with you:

From day 1, the hike in the rain (reminder: the only rainy day we had in Scotland!), here's the group outside the bothy to which we retreated for lunch:



The lovely inn at Gairloch had a wee, wicked guard dog named Bos. You'll see how vicious he could be:



And here's a great photo of Stuart in action with his dogs, and the group thoroughly enthralled by the spectacle:

How To

Part of our ongoing series on life with CFS

People with Chronic Fatigue Syndrome are all too familiar with prescription medications and supplements. There is no cure for CFS, so all we can do is try to manage our symptoms. Like many patients, I have taken medications for a variety of symptoms, including pain, sleep, and IBS. Most people with CFS are very sensitive to medications, so dosages must be carefully managed and changes must be made slowly. Recently, I needed a written refill for one of my medications. Here is my "How To" guide to getting a refill from a doctor:

1. Call medical assistant, requesting that written prescription for your essential medication be waiting at the front desk the next day (since you have another doctor's appointment in the area).
2. Go to office and discover the prescription is not waiting for you.
3. Try and stay calm as medical assistant tells you she did not get your message because she was out of the office the day before, and no one covered her phone.
4. Wait as assistant speaks with doctor about prescription.
5. Control frustration when assistant tells you that doctor will not write prescription for your essential medication because you were a "no-show" at your last appointment.
6. Correct medical assistant, pointing out that you had rescheduled that appointment because you had no one to drive you on the day in question.
7. Wait in examination room while assistant asks doctor to come speak with you.
8. Control anger when assistant reports that doctor said, "Tell her I do not run a walk-in clinic. She can't come in off the street and get a prescription. She can make an appointment to see me on Monday."
9. Agree to provide assistant with phone number and fax number for mail order pharmacy, so that attempt can be made to secure refill that way.
10. Go home and count how many doses of this essential medication you have on hand.
11. Reduce dose of essential medication in attempt to stretch out what you have left.
12. Call assistant every day to check on status of the refill request.
13. Start looking for a new doctor.
    

There are so many things wrong with this recent encounter with my doctor, and I won't bother to point them out. I'm sure you can figure out why I am angry.

But I actually think that I am lucky. Why? I am fortunate to have prescription coverage, so that when I eventually get the refill I will not have to pay hundreds of dollars for the medicine. I am fortunate to live near a city that has other doctors to choose from. Many people with CFS are not as fortunate. Less than 20% of the people who have CFS have been diagnosed, so the vast majority of people are not getting help for their symptoms. Even patients who have been correctly diagnosed struggle to keep health insurance (if they have it to begin with). The chances of a person with CFS getting the correct diagnosis from a doctor who believes them and has the knowledge to treat symptoms appropriately? Not good for most people.

I have to remind myself of that, so I can keep my outrage in perspective. Because how I really feel is mistreated, insulted, and angry.

How Many?

Part of our ongoing series about life with CFS.

How many people have Chronic Fatigue Syndrome in the United States? Until recently, the answer was approximately one million people, almost four times the number of people with Multiple Sclerosis. Now, a recent study estimates that 2.64% of the population may have CFS.

In other words, approximately 5 million people in the United States have CFS. And the number could be as high as 7 million.

More people have CFS than have HIV infection. The CDC estimates that approximately 1.1 million people were living with HIV infection at the end of 2003, and 25% were undiagnosed.

More people have CFS than have breast cancer. Approximately 2 million women living in the U.S. have been treated for breast cancer.

So how much is our federal government spending on CFS research? $13 million in 2006. That's right, $13 million. Less than three dollars per patient. Angry yet? What if I told you that less than 20% of people who meet the diagnostic criteria for CFS have actually been diagnosed. Millions of people are sick and do not know why, or are being treated incorrectly, or have been told it's all in their heads.

Where is my government? Why is no one helping us? This new study has its critics, to be sure. But even if the study is completely wrong, and "only" 1 MILLION Americans have CFS, my government does not invest nearly enough money for research.

What will it take for our lawmakers to pay attention?

What will it take for you to help?

Edit: Check out today's article in the New York Times.

The weather in Scotland defied reason and explanation--after the one misty day, we had nothing but sunshine. It brought out the colors of the sea, the sky, the heather, the grasses, the rocks. In short: just beautiful.

We found the bothy in the previous post on a trek across a headland near Gairloch.



The peat is a veritable sponge:



We hiked off-trail across the peat...





...to get to this reward:



The hike back from the beach was pretty scary, actually, so we don't have photos of that bit--we were focused on staying on the cliff...

Near Gairloch, we stayed in an old lodge in Shieldaig, built as a hunting and fishing destination in the late 1800s. The only thing it lacked was a murder--it felt like an English movie. With a fantastic view:



Here's the view from my room:



The lodge had two grand sitting rooms for guests, one of which had a "boom box" and a collection of CDs (mostly classical with some other random bits here and there). I found the following:



...(with apologies for the poor resolution). It says, "Whip my Towdies." We of course asked Angela, our Scottish authority, what that meant, assuming it was some Scottish folk CD or something. She didn't even recognize the word. We're somewhat alarmed...

Hiking on the peat

Our first proper hiking day in Scotland was gray and misty--extremely appropriate as we walked off-trail across the peat.





The peat, the geology, the flora--incredible. While the heather unfortunately was not in bloom (we walked amidst 3 varieties that bloom progressively throughout the summer, but were too early for any of them), we walked amidst it constantly. And gingerly amongst the gorse (I now know why it features prominently in so many English novels--those lovely yellow flowers mask some wicked wicked thorns). The peat is a virtual sponge, absorbing and holding onto water. Walking off-trail, we became skilled at reading the plants in the effort to preserve some degree of dry socks--step on that kind of green moss and you'll sink in 6" of water; step on that reddish moss and you'll have time enough to get to the next foothold before you sink; step on that tussock of grass and you'll be ok...





The highlands apparently have a longstanding tradition of bothies (plural of bothy?), little huts/shelters scattered here and there for the use of hikers/backpackers. We took shelter from the rain for our lunch. Here we've been joined by another hiker (center) who was out walking the dogs while her husband fishes.



A room with a view...



We encountered the bothy below on another day. This was designed and constructed by a very resourceful and hearty man (because it is NOT easy to get to, particularly schlepping building materials...). Here, the entrance...





Here the fireplace and mantle, complete with photos and icons:



Here the sitting area:



And here, the kitchen:



featuring rice, courtesy of...Glenmorangie? Well-aged, no doubt.

CFS Tuesday

Part of our ongoing series about life with CFS.

Tomorrow is Independence Day in the United States, and that has me thinking about what independence means to people with Chronic Fatigue Syndrome.

Before I got sick, I was independent and self-supporting. I had a great job, was a productive member of society, lived on my own and didn't need much help from anyone. Now, I am disabled, unable to drive a car let alone work. I'm fortunate to be married to a wonderful man, but if I had to live alone I would need a great deal of assistance. As it is now, we use grocery delivery and house cleaners. My mother drives me to my medical appointments.

Not all people with CFS are as disabled as I am. But implicit in the diagnostic criteria for CFS is that a person's fatigue and other symptoms must substantially decrease his or her previous activity levels. Some people with CFS may be able to work, but may have to change jobs or reduce their work hours. Social activities fall by the wayside, as may plans for education or travel. Young people with CFS may need at least some periods of home schooling and tutoring. During a crash, all of us need help with laundry, food preparation, and other routine tasks. Sometimes, people with CFS must move in with family. Others are not so fortunate, and struggle to take care of basic needs. I know of more than one person with CFS who has gone months without leaving home, or weeks without leaving the bedroom.

Independence is a frequent casualty of CFS. We have to figure out how to cope with things as simple as sweeping the floor when we may be too weak to walk across the room. For me, the more difficult task has been adjusting to needing help from others. I would much rather give help than receive it. It is hard to admit that I cannot do something as simple as buy stamps at the post office. For a time, I struggled with feelings that I wasn't worth anything if I couldn't do anything. For me, freedom from those erroneous beliefs has been a different form of independence.

the community of Scoraig

Scoraig is a small, idyllic community on a point in the western Highlands, facing the Minch and west to the Outer Hebrides. It's accessible by walking path (about 4 miles one way?) or by boat/ferry. Here are scenes along the way:





Fairly self-sufficient, the residents rely on wind and solar power (and now cell phones); many have gardens, some raise sheep, some spin their own wool. We chose a picturesque picnic site for lunch:





Scoraig oddly has a little "faux" lighthouse set well inland and serving no lighthouse function.



Instead, they've converted it to a little interpretive center, providing background on the community, the lifestyle and, in particular, the local knitting scene. Bear with me--the following photos were taken in difficult lighting conditions through glass...









Eliza particularly liked the two, erm, sweaters on the right:



Here Jerry and I take in the sunshine on a bench tiled with designs by the local schoolkids.

Herding cats--I mean, sheep

Eliza's hiking guide arranged for the group to visit friend Stuart's farm. Stuart raises sheep (about 700) and trains sheepdogs (term?). He has several border collies in various stages of development, some of whom competed the day before in a local contest.



Sheep are, well, perhaps not the brightest animals. The dogs, on the other hand, are brilliant. And sooooo keen to work, they positively vibrate with energy as they struggle between two instincts--that to obey Stuart and "stay" when he commands it, and the other to get out there and get the sheep organized properly, as soon as possible. And when one of their "peers" is working and they are not, they look like they are in physical pain with the struggle of restraint.

Here a couple of them are working:



And the sheep are getting there...





Stuart had a series of verbal and whistled commands (the whistle is needed to carry over long distances): stay, go out, come in, come in left, come in right, etc. Really remarkable.



Here they are enjoying a well-earned rest.