Goslings!

Dear Knittah,

Guess what I got to do at lunch?!

Love,
Swatchy

Residence At York U

Dear Nori,

I thought I'd give you an update on Noricum. We're currently at York University, meeting with colleagues here. We're staying at the graduate student residences, which are nice except for the cigarette smoke. Yuck! Luckily it isn't too bad if we keep all the windows open. (Although it does get rather chilly then.)

This is where Noricum has been working:

And this is the rest of that main room:

Here's where we sleep:

(A comfortable bed, with plenty of room for both of us.)

Well, I'd write more, but we haven't done all that much yet. The campus is nice, but Noricum hasn't taken pictures yet. Plus she says she needs her computer back so that she can practice her talk. I'll write more later.

Cheers,
Swatchy

Watching Fireworks

Dear Knittah,

"South of the border," yesterday was Memorial Day. Up here they have Victoria Day, the queen's official birthday. Although there's been a change in queens since it was created... but Canadians like their holiday in May (it lets them know when to plant the garden and open up the cottage), so they left it the same, including the name.

Noricum had been down south for so long, she didn't remember that Victoria Day had fireworks. We were sitting on the couch (she was working on her talk, and I was working on the toque), and we heard something that sounded a lot like guns being fired. Frequently, and fairly regularly. At first Noricum thought there might be a firing range on campus (although she hadn't a clue why, or why they started using it at dusk), but then I noticed that there were fireworks. I then watched fireworks while Noricum continued to work on her talk. (Don't worry about the toque... it's very close to being done.)

Oh... and instead of Memorial Day, Canadians have Remembrance Day in November. "The eleventh hour of the eleventh day of the eleventh month" they have a minute of silence to remember the horrors of war, and those that made sacrifices for us.

Love,
Swatchy

CFS Tuesday

Part of our ongoing series about life with CFS

Pop quiz: name three symptoms of Chronic Fatigue Syndrome. Fatigue is a gimme, so come up with three more.

Could you do it? Compare your list to the following:

1. Muscle pain, not related to injury or overuse
2. Joint pain, with no redness or inflammation
3. Fevers
4. Sore throat
5. Swollen glands
6. Irritable bowel syndrome
7. "Post-exertional malaise" - a fancy term for needing a 4 hour nap after a 20 minute walk
8. Memory problems, both short and long-term
9. Headaches
10. Word finding difficulties, both spoken and written
11. Inability to sustain concentration at pre-illness levels, such as only being able to read for one hour instead of four
12. Processing difficulty, specifically in understanding spoken or written information
13. Reduced reaction time
14. Difficulty sustaining focus, such as being able to block out sensory input to focus on a task or conversation
15. Insomnia and/or hypersomnia
16. Sleep disturbances, such as nightmares
17. Unexplained weight loss and/or weight gain
18. Orthostatic intolerance, which involves abnormal drops in blood pressure while standing

There are other symptoms that have been found in research studies, such as a variety of bloodwork abnormalities and dysfunction in oxygen use during exertion. And this doesn't count the anecdotal reports that patients are familiar with: increased risk of miscarriage, increased risk of certain cancers, and so on.

Something is clearly wrong with our bodies. And "fatigue" doesn't begin to describe what we endure.

Swatchy Mama Says Hi.

Dear Knittah,

Well, I have been living with Kathy and family for a couple of weeks now and things have been pretty busy. Kathy says it is normal, but I'm starting to think normal is relative. Pretty soon after I arrived, one of Kathy's kids had a bit of a mishap. In the course of trying to escape from a perceived threat of a chase by his brother, Thing 2 (the almost 8 year old) confirmed that he will not be a hurdler when he gets older. He tried to jump over a miniature hockey net and didn't quite clear it. He landed on on his left arm and it was all downhill from there. A quick trip to the Emergency Room and he emerged with a splint and an appointment with an orthopod. I got to accompany them to the doctor. This is a picture of Thing 2 and I in the infamous minivan before we go into the doctor.

Once we were in the office, I checked out the X-Rays on the lightbox. Hmm, I don't think Thing 2 is going to be happy with my diagnosis.

As I predicted, Thing 2 had a suspected break in the growth plate of his wrist. He was put in a lovely blue cast for 3 weeks. This is a picture while he was still excited about getting everyone to sign his cast. He hadn't made the connection that he would be missing a month of baseball.

All in all, a pretty exciting first week. I promise to post more soon.

Love,

Swatchy Mama

Preparing To Represent!

Dear Knittah,

I wanted to assure you that I'm working on a tuque (Look at me! I'm speaking Canadian!) so that Noricum and I can properly "represent" while we're in Toronto. (Noricum is busy packing and thinking about her talk, so she assigned this task to me.) However, I misjudged and started the decreases a bit too early... it turns out most people don't have shallow heads like me.



It shouldn't take me too long to finish.

Oh... do you think it's okay that Noricum and I bring just the one hat for both of us?

Love,
Swatchy

CFS Tuesday

Part of our ongoing series about life with CFS.

Today is Lobby Day for the CFIDS Association of America. Almost 100 patients, caregivers, family and friends are pounding the halls of Congress to ask for more federal research dollars. I will not be with them.

I went to Lobby Day last year. Here is what I wrote about the experience then: "I felt empowered and encouraged that other patients felt it was important to participate, and that staffers felt it was important to listen . . . If CFS were not an invisible illness, we would not have to beg for research crumbs. So what’s the answer? MAKE THE ILLNESS VISIBLE!" But here is what I said about the aftermath: "Recovering from Lobby Day 2006. It’s a bitch. I’ve seen a lot of my bedroom ceiling and my nightstand. . . I don’t feel too terrible unless I get up and walk around. You know, for big things like using the bathroom or getting some water. So what am I complaining about, really?"

Although I felt the experience last year was valuable and empowering, I chose not to make the same sacrifice this year. Life with CFS means hard choices and not doing important things you might desperately want to do. Lobby Day is another one of those things.

But I will not be unrepresented. My mom and best friend will be lobbying on behalf of me and the more than one million other people in the United States with CFS. Today, a very few, dedicated people will try to speak loud enough for our government to hear. They will ask our lawmakers to mount a meaningful response to this illness, which costs our economy billions of dollars in lost productivity and healthcare costs. They will ask Congresspeople to pay attention, and to DO something about all that patients have lost and will continue to lose until there is a cure.

Would you like to help? Join me at the Virtual Lobby Day and write to your own representatives. Or donate to support the work of the CFIDS Association on behalf of the million-plus people like me.

CFS Tuesday

Part of our ongoing series about life with CFS

I cannot imagine being homebound and not having the internet. Back in 1995, I was diagnosed with CFS and began the process of applying for disability. I was gradually coming to realize that CFS might be more than a brief interlude in my life, and I was struggling to adjust to life confined to my home. At the same time, the internet - or more specifically, the Web - was becoming accessible to non-computer people like me. As the Web grew, so did my reliance upon it.

Substitution: The internet substitutes for leaving my home. I order my groceries online. Just this morning, I received a delivery from an office supply store with my toner and sharpies. I do all my holiday shopping online, as well as my banking. I can't remember the last time I went clothes shopping in a brick-and-mortar store. I have bought a large portion of my yarn stash online. Even my local library is online, and I can request books for my husband to pick up. There are still plenty of things that I have to see (or ask someone else to see) in person in order to purchase. Shoes, for example. But as more stores and services become accessible through the Web, the more energy I can save for other things.

Connection: Let's have a moment of praise for email. (insert Hallelujah sound here) Email is my lifeline. I communicate with friends, family and professionals through email. It is becoming my preferred method of communication for most things. Talking on the phone is tiring, so I like using that energy for my inner circle. Email also allows me to ask a question when it occurs to me, before brain fog whisks it away. Blogging is another way of connecting that is only possible with the Web. I have made many real-life friends that I could only have met through blogs. Finally, the online knitting community has been a blessing in my life. I cannot leave my home for a regular Stitch-n-Bitch, so the Web is my only way of participating in a knitting community.

Creation: Connection has led to new ways of creating. My blogs have become outlets for thoughts and ideas. Noricum and I met and created Travels With Swatchy without ever seeing each other in person. The Web gives us all a chance to express our creativity to an audience that we might not have found locally. For people with CFS, the Web may be our only audience. And given the size of the auditorium, whatever we create is likely to appeal to someone.

I don't know how people with CFS managed without the Web. I cannot see how I could.

Fiesta

Everybody loves parades. Fortunately, we got out of jail and home in time for the annual sea turtle festival in Matapalo. The festival started with a parade. The Matapalo school band played.


All the local schools participated, including the Bullis students:






I helped hold the banner at the front of the line!


After the parade, everyone gathered for a program. Park Ranger Carlos Diaz was the MC, and he even sang as part of the show.


There was more music, and all the students performed skits. Some pretended to be leatherbacks and laid eggs . . .


and the Bullis students performed a skit with an intricate dance.


After the program, there was lots of food! (my favorite part)


But those research students can't take a party. Look at them napping after the festival!


I was tired too, though. I was ready for bed and the trip home.

A Quick Visit

Over the weekend, Swatchy Mama paid me a little visit. Look for more posts from Swatchy Mama soon.

CFS Tuesday

Part of our ongoing series about life with CFS

Living with CFS means missing out. The diagnostic criteria for CFS requires that the fatigue "results in substantial reduction in previous levels of occupational, educational, social, or personal activities." That cold, clinical description cannot convey what this means in real life.

I missed the weddings of two former roommates. I missed my cousin's graduation. A good friend's baby shower. Countless parties for birthdays, First Communions, and house warmings. And I've missed an unknown number of casual dinners and gatherings with friends and family.

In a few weeks, I will miss an important business event for my husband's company. I considered accompanying him to Los Angeles. I didn't care about the crash I knew would follow. No, I decided not to go so that my husband would not be distracted by worrying about me. As my primary caretaker, he is always aware of my physical state. Do I need to sit, lie down, go home, take medication? Have I eaten enough, slept enough? If I were to go with him to LA, he would spend the whole time torn between taking care of me and taking care of his business. I can't put him in that position.

So once more, I will miss out. Family and friends do their thing, and out of necessity I am left behind. I've grown more accustomed to the feeling. I don't get too angry about this anymore. Now I feel sad acceptance of my situation. I cannot go, but others should not suffer because of it. This is just the way it is.

Noricum proposed the Swatchy project as a partial solution to my missing out. Now, at least, I send my Swatchys out into the world to take my place. It works! Through Swatchy, I feel more connected to all the events that I must miss. It doesn't erase the pain, but does make it easier to bear.

Mudpots, Volcanoes, and Jail

Hey Swatchy! Remember on my last trip to Costa Rica, when I went to the mud pots? Well, we went back with the kids from the Bullis Charter School.


The mud pots are at the Rincon de la Vieja volcano near Liberia. The heat from the volcano boils water underground and the mud bubbles up. Can you see me? I'm trying to keep the kids from crossing over the safety fence.


We had to hike through the forest and over a stream.


And we got up close and personal with some of the wildlife, like this Ctenosaur (that's an iguana to you and me)!


Afterwards, we had lunch at a local hacienda. I drank too much juice.


The next day we set out for Volcano Arenal. We stopped in Canas for pastries, and I led a tour of the town. You can see our bus in the background of this picture.


It was very windy that day, so we had a hard time getting the group photo in front of the church.


And then we saw Arenal. It's one of my favorite places. It was smoking and steaming away. Rocks were falling down the volcano, too, so no place to do a climb.


On the way back, we stopped in Liberia to use the restrooms at the police station. But some of us ended up on the wrong side of the bars:



Even me!!!!

McHatchery

I was in charge of the hatchery for an afternoon. The hatchery is a restricted place that protects the nests. No one is allowed in, because the nests are under the sand. There are so few Leatherbacks, every egg counts.



Working the hatchery involves sitting in a chair under the hot sun. All the time, you have to watch for predators like raccoons and birds that try to get in the nests.



Every twenty minutes, I had to walk over and check the nests to see if anyone was hatching. That little black thing actually holds a thermometer that monitors the temperature of the nest.



Then it was back over to the chair again. Gabi and Kim kept me company for a little while. It's a tough job, but somebody has to do it.



Gabi said I was an excellent assistant!

Just Beachy

Sun and sand equals time on the beach. See how Kim and I are keeping an eye on the kids? It's hard to keep track of so many of them.


I preferred working on my tan with some of the teachers.


Don't worry, I used plenty of sunblock!


I really needed a nap.


One problem with the beach is that the bigger people tend to kick up a lot of sand. You have to watch out.


The ocean sure looked nice, but I didn't go in. Fear of felting, you know.


Then we got a big surprise. Mr. Leatherback came up on the beach for a visit!


He wanted to see how things on the nesting beach were going. He also checked out the hatchery where we save clutches of eggs that would otherwise be washed away by the tide. We got to talking, and all became great friends.


Make sure you check out Mr. Leatherback's video of his visit to the beach!

Swatchy and iSwatchy

Swatchy and iSwatchy

iSwatchy arrived in Winnipeg last night, a bit tired from his journey. He and Swatchy caught up a bit this morning, and iSwatchy will be going over to my brother's later today.

Swatchy will blog about the crocuses and other spring flowers soon... he's deciding which of the gazillion photos to post. ;)

Nest Checking

A lot of the work at Playa Grande focuses on the leatherback sea turtles and their nesting habits. Leatherbacks come ashore at night and dig deep nests in the sand with their flippers. They lay eggs and then cover the eggs back up with sand. After that, the mommy turtles go back into the ocean, leaving the eggs to develop and hatch on their own.

One of the jobs of researchers is to dig up old nests because a lot can be learned from them. Researchers count how many eggs and eggshells are in the nest. From that, they can figure out how many hatched and what happened to the eggs that did not hatch. Some eggs die shortly after they are laid, and some die shortly before the hatchlings come out. No one knows why yet.


Gabi is one of the researchers, and she explained to us all about the nests.








I had to supervise the digging, but it seemed like they were doing it right.







Then something very exciting happened! We found a hatchling!




Can you see the head?




We saved a baby leatherback sea turtle!!!!