Tuesday, November 28, 2006

Back to the Blog

I knew I hadn't written in my blog for awhile, but I didn't realize it had been almost three weeks! This is good news...I've neglected my blogging because I've been feeling well enough to be engaged in other pursuits and have used my writing time for earning some much-needed extra money. So, how about a quick re-cap of the highs and lows of the past three weeks?

A definite high - we enjoyed one last camping weekend this season with a wonderful trip to one of our favorite parks (a beautiful place with the unlikely name of Turkey Swamp). The weather was nice, we hiked and geocached, and enjoyed just getting away from the phone, TV, computers, etc.

Then, a series of relative lows (though, in perspective, nothing horrible)...a $2000 repair bill for my aging VW, an electric surge burning out our washing machine and requiring a new one (the same week as the VW), and yet another sinus infection for Craig. Then a big one...

Two Fridays ago, with Ken out of town, I let the boys have a friend sleep over, and we ended up in the ER until 2 am. It was a freak accident (not so unusual for Craig) - in trying to clear off the bed in the dark, Craig tripped and hit his head on the nightstand. I heard a piercing scream, ran down the hall, and found my sweet little boy covered in blood. Pretty gruesome. He got 16 stitches, and Ken got yet another phone call as he returned home that he should meet us at the children's hospital. Believe it or not, this was the third time Ken has returned from a trip and had to meet me or the kids at the ER (and he doesn't even travel very often!). Our little Frankenstein is healing nicely now and had his stitches taken out last week. That makes four head injuries in his scant eight years.

Finally, we had the usual holiday frenzy. We flew to Oklahoma last week to spend Thanksgiving with Ken's parents. Our nephew and his family joined us from Texas, and we had a wonderful time. I was dreading the flights, but it all went well. I made a special effort to intake lots of salt and keep my blood pressure up, and I fared much better than on previous flights.

I've really been feeling good this past month and hoping it will last!

Wednesday, November 08, 2006

CFS Awareness Bracelets

I recently read an article about a mother and daughter who have started a business making jewelry, including awareness bracelets for CFS and other illnesses. I went to their Girlie Girls Jewelry Studio website and was so impressed!

This is my personal favorite of the two CFS awareness bracelets they show. I've already told Ken I want one for Christmas! They chose stones based on traditional healing properties, and part of the price goes to the CFIDS Association of America to support CFIDS research. My boys love these, too; I've already e-mailed the Girlie Girls to request a male version (sans flowered beads).

Check out their website which also includes bracelets for breast cancer, arthritis, diabetes, and more, plus some other beautiful jewelry designs. Get a head start on your holiday shopping, support CFIDS research and awareness, and pass the word along!

Monday, November 06, 2006

Living in a World Apart

We spent our Saturday immersed in soccer activities. Each of our sons played in their last games (3 hours on the chilly sidelines for me), and we went to an end-of-season bonfire party Saturday evening. Too much for me, of course, and I felt rotten on Sunday, but the boys both handled the heavy exertion well.

I found myself focusing more on emotional impacts, rather than the obvious and expected physical effects, though. Spending the entire day with a large group of casual acquaintances reminded me that we live in a different world. I was surrounded by people most of the day but felt very alone. It's like living in an alternate, invisible universe.

For starters, at both the games and the bonfire, most people were standing around, talking, while I had to sit. It's a small thing, but it separated me from the other parents. At the games, I wondered if they thought I was shy or even stuck-up because I wasn't standing with them and talking. I have always enjoyed social gatherings - used to be something of a party animal, in fact - and it still feels strange not to be at the center of the fun.

When someone did sit next to me and I tried to engage in conversation, I found that it was pretty one-sided. When someone I don't know well says, "How have you been?", the only appropriate answer is just to smile and say, "fine." Even with a Mom that I know better (and who knows of our health issues), I didn't want to bore her or scare her away. If I'm honest and talk about our daily challenges - and even our successes - she looks at me with pity and doesn't know what to say. So, I keep it light and positive and shallow.

When I manage to include myself in a group conversation, there's so much that sets me apart. Other parents ask what sports our boys are playing this winter. How can I explain that we're relieved to have made it through one sports season and can't manage any more? Two friends told us about a family summer camp they go to every year, saying, "You guys should come. You'd love it!" How can we explain that an action-filled week like that is completely impossible for us? Everyone is drinking beer and talking about how last year's bonfire party lasted past midnight. How do we explain that our boys need to go to bed before 9, even on weekends?

The answer, of course, is that you don't explain all these things. It's impossible for people leading normal lives to understand how different our life is. To try to explain would only alienate them and make them pity us. So, we just smile and keep our mouths shut. By the end of the night, I felt as if I hadn't honestly interacted with anyone. I've always been an upfront person - what you see is what you get - so this kind of superficial interaction feels false and unsatisfying to me.

This really is an invisible illness. Parties and other social gatherings that I used to enjoy just leave me feeling isolated and alone. I feel I have more in common with other CFS bloggers who I've never met in person than with the other parents in my own town. It's as if the world is now divided into two types of people: those who understand CFIDS and those who don't.

As Ken reminded me at bedtime, we have a wonderful life together with our two sons. We do a lot of great things together and have plenty of fun. I am quite satisfied with my life most of the time. I am grateful for our little family and the world we've created together, even with the shadow of CFIDS. My world has grown smaller, but I feel at home in this small world and blessed by the love of my small circle of friends and family who do understand.

Friday, November 03, 2006

A Big Day for CFIDS!

We are so excited here about the huge CFS publicity campaign that's being kicked off this morning! It looks like CFIDS will finally get the attention it deserves in the media, leading hopefully to a more informed public and better-funded research.

At the CDC's press conference this morning, they'll be announcing the NIH's seven new grants for CFS research studies. They all look like solid, useful scientific studies. Hooray!

The media coverage began last night in a big way with an excellent story on CFS on the NBC Nightly News featuring Jennie Spotilla, a fellow CFS blogger. Jennie's interview was awesome, and the whole story was well-done and accurate (a miracle considering past media coverage of CFS). CBS Evening News says they may run a story on CFS tonight, too.

Once the press conference is finished this morning and a story goes out on the wire, expect to see articles in newspapers and magazines across the nation. US News and World Report will run a CFS story in their Monday, November 6 issue. Other magazines have expressed an interest in covering CFS soon, including Glamour, Woman's Day, More, Shape, Self, Prevention, and First for Women.

So, tune in, keep your eyes open, and celebrate this long-overdue attention! Then go to the CFIDS Association's Action Center to send letters of support (it only takes a few minutes).


Thursday, November 02, 2006

Fun, Fun, Fun!

We did it! We made it through another Halloween with everybody feeling well and able to go trick-or-treating. Holidays are so tough with CFIDS - all that fun and excitement can make you so sick. It's always a happy relief to come through one successfully. I went along for a bit of trick-or-treating at the houses near ours, then Ken took over and escorted the kids (our two boys, plus three friends) to the rest of the houses in our neighborhood. There's nothing like the thrill of Halloween night - dressed up in costumes, with your best friends, running from one house to the next, collecting candy. My boys just love it (and we do, too!), and I'm so glad they were able to enjoy it. I was prepared for crashes the next morning, but - surprise! - they both weathered the exertion OK. Maybe the Florinef is already starting to work for Craig. I felt pretty rotten yesterday morning, but a 2-hour nap and a shower revived me.

And now, all of a sudden, it's November, and the rest of the holiday season is upon us. Yikes! Time to start thinking about gifts and travel and cards and whew... Hopefully, the boys' good health will continue for the next couple of months.

Here we are on Halloween night. We decided to re-use our togas from Jamie's Greco-Roman Night school function last spring. Jamie, being in middle school now, went for the Ancient Greek-Zombie combo, and Craig chose to be a knight. Now we have huge bags of candy all over the house - tasty but dangerous!

P.S. CFIDS will be covered on the NBC Nightly News tonight and on the Fox morning show tomorrow for the kick-off of the big CFIDS Awareness Campaign in the U.S. Another CFS blogger will be interviewed on the shows - - be sure to tune in!