CFS and Lyme

I'm pleased to report that I'm feeling better than I expected to at this point. We had a very nice weekend with my mom and her husband, played lots of games, and enjoyed the soccer game in Philly Saturday night (except I was so overstimulated I couldn't get to sleep that night!)

I re-started antibiotics for Lyme disease last Wednesday (I've taken two other rounds of antibiotics over the past 6 months). I expected another severe herx (initial worsening), but it's not too bad this time. For about 2-3 hours after I take a dose of doxycyline, I experience aches and knee and hip pain, but the rest of the time, I've been feeling pretty good. So, I guess I'm making progress and there's a lot less Lyme left in my body this time around - hurray! Now I'll just need to be sure to stay on antibiotics long enough to completely eradicate it.

Lots of people have been asking me questions about Lyme: how I can tell what's Lyme and what's CFS, how I know I haven't had Lyme all along, etc. These are really good questions, since Lyme and CFS are so similar and both are so difficult to diagnose properly.

I addressed some of these questions in an earlier post on Lyme and CFS, during the early stage of my treatment last fall.

I know it's different for everyone, but I knew immediately that I got Lyme last July because I had sudden, severe knee pain (and Lyme is practically an epidemic here!). Plus, we had just come home from a 3-week trip that included lots of camping and hiking. Joint pain has never been a part of CFS for me, and my older son also had knee pain when he got Lyme twice before. Other Lyme symptoms, like exhaustion and flu-like aches, are exactly like CFS. For me, though, I knew I'd been doing very well lately and that crashes were more rare and typically lasted only a day or two after exertion. So, when I suddenly went from doing pretty well to feeling crashed every day - and then the knee pain started - I was certain I had Lyme. I think it's all about knowing your baseline...unless of course you've had Lyme from the beginning (my earlier post explains why this wasn't true for me).

Interestingly, I have still never had a positive test result for Lyme, even when a Lyme specialist sent my blood samples to Igenex, well-known as the best lab for Lyme testing in the U.S. Many doctors believe that the only truly accurate "test" for Lyme is to try doxycycline (an antibiotic used to treat Lyme). If symptoms improve briefly and then get much worse, it's Lyme (the getting worse is a herx or die-off reaction); if there's no change at all, it's probably not Lyme. After a couple months of herx, my symptoms (the knee pain and the "new" crash symptoms) went away completely and I felt just like I had before I got Lyme last summer. Unfortunately, I just stopped antibiotics too soon, and there was still some Lyme left in my body, so hopefully, this round will take care of that.

For anyone with CFS, I would highly recommend you consider Lyme and its co-infections if you have joint pain and/or severe cognitive dysfunction (common in later-stage Lyme) and you have gotten worse over time instead of better. You can start with the standard tests, but false negatives are common, especially when you have a messed-up immune system. Here is an excellent article on a Lyme blog explaining 27 reasons why false negatives occur. If you have the symptoms but test negative, you might want to talk to your doctor about a trial of doxycycline.

Something else to be aware of is that there are about a half dozen other tick-borne infections that commonly occur with Lyme, often referred to as Lyme co-infections. These also cause symptoms very similar to CFS (one even causes exercise intolerance) and require different treatment. There are tests for all the co-infections - again, not 100% accurate but a good starting point. In fact, I'm beginning to suspect that Jamie may have a Lyme co-infection, mycoplasma. He tested positive for it a year ago, and the Infectious Disease specialist wondered why. I recently discovered it's a Lyme co-infection, and Jamie has had Lyme twice. I'm going to look into this with his doctor.

Want to learn more about diagnosis and treatment? The Lyme Disease Foundation offers extensive information on Lyme and all of its co-infections. The International Lyme and Associated Diseases Society is one of the best sources of accurate information on Lyme and co-infections, including several different very detailed guidelines on diagnosing and treating Lyme and co-infections.

I hope this helps to answer some questions.

Starting Over

Well, it's official. I finally talked to the Lyme doctor on the phone today and described the symptoms I've had this week, and he agreed that it seems I still have Lyme.

It was obvious to me by Wednesday when I still felt badly crashed, with ever-worsening knee pain. Joint pain has never been part of CFS for me, just Lyme recently. I started back on doxycycline Wednesday night (I had a few left over) and felt much better Thursday. Today I'm starting to feel run-down and achy again - obviously went through the brief (but welcome) improvement and am now entering yet another herx reaction.

I've been upset at times this week (I actually starting crying in the drugstore today!), but I'm in a better state of mind now. It is what it is, and the only way to get past it is straight through, right? I know I can expect to feel bad for awhile while I herx again, but I also know that beyond that I will feel good again.

One thing that helped me today was reading a very inspirational magazine interview with Michael J. Fox. Years ago, I read his memoir, Lucky Man, and was so impressed with his positive, upbeat attitude. Now he's written another one called Always Looking Up: the adventures of an incurable optimist (to be released April 7), and it sounds just as inspirational as the first. Here are some excerpts from his interview in this month's Good Housekeeping magazine that really resonated with me today:

"It is about trying to still the voices in your head - the monkey brain that's saying, "Gotta do this, gotta do that" - and trying to really listen."

"I would say look at the choices you have, as opposed to the choices that have been taken away from you. Because in those choices, there are whole worlds of strength and new ways to look at things."

"It's just constantly being in the now; knowing you don't get to choose whether you move forward. You're going to move forward, so don't fight it."

Well, my little monkey brain was definitely in gear today, so I'm trying to quiet it down and accept what is happening and find the best way to move forward.

We have a busy weekend planned. My mom and her husband are coming to visit, and we're going to a soccer game in Philly (one of the boys' Christmas gifts) Saturday evening. I know I might end up feeling like crap this weekend, but it's OK. I'll be with my family, and I'll try to enjoy their company.

Hope you have a good weekend, too.

Weekend Update

We had a great weekend in Baltimore, and I promise to upload some pictures soon. I just wanted to post a quick update on how we fared after our big weekend.

I walked more this weekend than I normally would in a month! We spent lots of time strolling around Inner Harbor, plus touring the U.S.S. Constellation (a Civil War-era ship in the harbor) and the National Aquarium. Not all that exerting but the worst kind of activity for someone with CFS - lots of time on our feet. We also spent two hours in our dark, quiet hotel room on Saturday, resting in between activities, so that helped all of us.

Craig came through the weekend with no problem at all and went off to school Monday morning feeling great. It's really amazing to me sometimes how well he's doing since he started Florinef. It makes me feel so good to see him in his natural state - active and energetic.

Jamie didn't do so well. He's home from school today for the second day, achy and worn out. I don't know how much of this crash is from Baltimore and how much is due to last week's two snow days, when he and Craig spent two straight days sledding, with after-school snowball fights the rest of the week. He said this weekend that he felt bad all last week but forced himself to go to school - he can only push himself like that for so long before succumbing to a full-blown crash.

As for me, I did great this weekend! I felt good and managed all the walking just fine (the long rest helped a lot!) ans felt pretty good on Monday. And I had NO knee pain at all, so I was thinking maybe I was wrong about the Lyme disease still being active. Now I'm not so sure again. I feel pretty bad today - achy, tired, sore throat. Is that a delayed reaction from the weekend, simply a CFS post-exertional crash? Or is it because I put the heating pad on my knees last night and caused a Lyme herx (that's what happened while I had Lyme)? I'm starting to think that the only way I'll be able to answer the Lyme question for sure is to try one more week of doxycyline (antibiotics) to see if they cause a herx. No response means the Lyme is truly gone; suddenly feeling worse means it's still there. I have an appointment with the Lyme doctor next week (supposed to be my last one!!), so I'll probably need to just wait and see.

I have to get to the post office, then I plan to rest aggressively the rest of the day!

Joy

A fresh day, a fresh start. I'm in much better spirits today. Thanks for all the support and encouragement. I made a conscious decision to enjoy the weekend and deal with the possible return of Lyme on Monday.

I cheered myself up by sending out two new writing queries (to ease my financial worries), making homemade butterscotch pudding (is there any food more comforting than pudding?) and listening to my "Feel Good" playlist. It's impossible to stay in a bad mood when belting out Queen's Bohemian Rhapsody or I Will Survive by Gloria Gaynor. What are your favorite feel-good, cheer-up tunes?

For awhile now, I've been wanting to write here about joy. Although I've always been an upbeat person, CFS has made me more acutely aware of how important it is to find joys in my everyday life, even when things seem bleak. A few years back, during a particularly difficult period, I began keeping a Joy Journal. At the end of each day, I jotted down things that had brought me joy that day, and I began to realize that there were plenty of good things in my life, despite the boys and I being so sick. Many of the things I wrote about were simple - singing a favorite song in the car with the top down, seeing a bright splash of yellow forsythia in spring, or playing a game with my kids. I don't write in the journal every day anymore, but it's still there to remind me of the joy that is all around me.

Some of the things that bring me joy are:

• My family, especially my kids
• Good friends
• Music
• Reading
• Nature, the outdoors, and sunshine
  
• Travel
• Movies and favorite TV shows
• Cooking and delicious food

I plan to write more about each of these joys over the coming weeks, to help remind me of what brings sunshine to my days, even when the dark clouds threaten. And I want to share my joys with you and hear about what makes you happy, too.

Have a great weekend - I plan to!

It's Back

I haven't been feeling well this week. Not horrible, just run-down with achy legs. I've been trying hard to be patient and remain positive, trying to convince myself that it's just a mild crash from doing too much last weekend or maybe from the little bit of snow shoveling I did on Monday. I've canceled errands I wanted to run, put off things I meant to get done, and tried hard to rest even though my mind has been racing.

But I can't ignore the facts anymore. The achiness is definitely centered in my knees now, and it's getting worse, not better. I think - no, I'm pretty sure now - that I still have Lyme.

I quit the antibiotics 10 days ago, felt really great last week, and have been getting worse and worse since Monday. I've been through this before, in October, and I know what comes next. I go back on doxycycline and have to go through the herx (worsening of symptoms) again.

I'm trying hard to stay calm and not panic, but the truth is that I'm close to tears right now. I thought I was done with Lyme. Isn't CFS enough to deal with?

Mostly, I'm worried about the next few days. I've worked hard to plan this trip to Baltimore this weekend, and I've been so excited about it. Now I can't decide whether to go back on the antibiotics immediately or wait until after the weekend. I'm not feeling great right now, but what if the herx starts right away and I get much worse for the trip? Or maybe if I start back on doxycycline now, I'll have a few days of feeling good before the herx starts (sometimes it works that way). I don't know what to do.

Also, we learned this morning at the orthodontist that Craig will definitely need braces next year. Previously, they thought he'd only need a retainer (which he had last year). So, my plans to try to set aside a little money so we could take the kids on a nice vacation next year are shot. I don't know how we'll find the money to pay for braces, on top of all the other medical bills.

A very rough day.

Seven Years Ago Today

Seven years ago today, I suddenly developed CFS and my life changed dramatically, though I had no idea at the time.

March 2, 2002, was a day like any other Saturday in my life: I took a step class at the Y while the boys took their swim class, cleaned the house, played with the kids, and cooked a big dinner. That evening, I was unusually tired and had a severe sore throat. The next day, Sunday, we had planned to take the boys on a day trip to Baltimore. Even though I wasn't feeling well, we stuck with our plans.

I vividly remember that day in Baltimore. My throat hurt so much it felt like I had swallowed barbed wire, and I kept popping hard candies into my mouth to soothe the pain. I woke up feeling tired that day, but, more than the exhaustion, I remember feeling a weird, foggy sense of detachment, like I was existing in another dimension. I remember walking through the National Aquarium and feeling so weak and out of it that I was leaning on the handrail near the shark tank, barely aware of what was going on around me.

I think the strangest thing of all about the abrupt onset of CFS is that you have no idea what's going on at the time. I looked back at my 2002 journal this morning, thinking that there would be a dramatic shift from March 1 to March 2, but there's no indication of that. I just thought I'd caught a virus and would be fine in a few days. And, here I am, seven years later, doing a little better but still sick. Isn't it bizarre?

Guess what we're planning to do next weekend? We're going to Baltimore for a mini overnight trip. We often have some sort of little late-winter getaway this time of year, often to Rehoboth Beach, but this particular trip, this week, to Baltimore, feels like a small victory to me. The boys were only 4 and 7 the last time we went there, so they really don't remember it, but I do. We will go back to the Aquarium, but this time, I know what to expect, and I'll be able to enjoy it, on my own terms. I may still have CFS, but I have reclaimed my life.

P.S. If you want to read more about how my CFS began and how I coped emotionally during those first years, take a look at the essays on the CFS page of my writer's website, www.suzanjackson.com. My Story is a detailed essay about getting sick, finding a diagnosis, and learning to live with CFS; Finding a New Normal is a shorter essay about acceptance that includes excerpts from my journals at the time; and Sick Mommy is about the unique challenges of being a parent with a chronic illness.

Flexibility & Giving In

I woke up this morning - after grocery shopping and dinner with friends yesterday - feeling exhausted and achy, with a bit of a sore throat. Still, I didn't want to give up on my plans for today. I had planned to go see a local photography exhibit with two friends and then have lunch. It's extremely rare that I do something like that, it fits with my new determination to have more fun, and I was just really looking forward to it. I tried an early morning nap, after I got Craig off to school, but I knew when I got up again that I really shouldn't go anywhere.

So, reluctantly, I let my friends know I'd have to cancel (I'm blessed with such understanding friends!), and I gave into the mild crash and camped out on the couch for the rest of the morning.

Flexibility is so important to managing CFS, but it took me such a long time to accept that. It's still so hard to get past thoughts of "but I HAVE to do that," and change my plans like I did today. Sometimes it's as trivial as a trip to the grocery store, but my husband always reminds me he can stop to pick up food. Sometimes, like today, it's something I want to do, plus I don't want to disappoint other people. But living with CFS means I (we) have to stay flexible. Last year at this time, we were ready to drive to Connecticut for my niece and nephew's birthdays, like we do every year. Jamie had been horribly sick all week, but we were still stuck in that mindset of "we HAVE to go." Finally, at 5 pm on Friday, with the car fully packed, Ken and I decided we needed to stay home. It was the right decision - Jamie continued to feel bad until Sunday - but it was so hard to make.

So, today I was rather proud of myself. I made the hard decision. Then, I did something else that's hard for me to do. I completely gave in to the need to rest and took the day off. I grabbed a warm quilt, a cup of tea, and my book and just allowed myself to relax. I ate comfort foods and watched an old movie with my lunch, then took my nap. Usually, even when I know I need to rest, I fight against it, still trying to do something productive from the couch or the recliner, still worrying about the to-do list.

So today I did the right thing, and I'm feeling a bit better this afternoon. I am hoping to go to my neighborhood book group tonight, after more rest time on the couch (I still have to finish the book anyway!) We'll see. As with so many aspects of CFS, these are lessons I seem to keep re-learning over and over, but today I'm glad I listened to that little voice inside telling me to rest.

Happy Mardi Gras 2009!

Happy Mardi Gras Day! I hope you're all wearing green, purple, and gold today. I'm listening to NOLA's Mardi Gras Radio as I type this.

I'm happy to report that our Mardi Gras party was a big success on Saturday. Everyone had a good time, I actually enjoyed myself, and by dinnertime on Sunday, I was feeling pretty good again!

We had jambalya, red beans and rice, and shrimp, followed by bread pudding with whiskey sauce and King Cake for dessert. We had about 18 adults (though 4 came late just for dessert) and 6 kids - our biggest party since CFS! I felt pretty good all evening - never even had that weird, brain foggy-experience where you feel like you're in a different world than everyone else. I was careful to sit, not stand, most of the time, but I did it!

Of course, it really stinks that I can no longer drink, but I still wake up feeling hung over! I was exhausted Sunday morning and went back to bed for my nap before noon, but after that, I felt pretty good again. We were all up until midnight, but the boys recovered well, too, and were both able to go to school on Monday. Here they are eating King Cake with their friends; the kids ate a whole cake by themselves! So, a big success and lots of fun.

Tonight, as per tradition, we're going to our friends' house for dinner. They lived in New Orleans the same time we did, and since moving to Delaware, we always eat Popeye's at their house on Mardi Gras day.

Happy Mardi Gras! Do something to celebrate and have a little fun today!

Party Preparations

It's been a busy week! Both boys took turns being home sick with that respiratory virus I had recently, plus we've been very busy getting ready for our annual Mardi Gras party this weekend.

We used to live in New Orleans, and we began a tradition of having a Mardi Gras party when we moved here to Delaware. It eventually grew into a HUGE thing with 50-60 people, large amounts of food and beer, and a very late night.

Post-CFS, the Mardi Gras party tradition continues but as a quieter, more reasonable affair. We've actually got a pretty big crowd coming this year - about 20 including kids - bigger than in recent years. I was a little worried about that, but I think I'll be OK and I'm relieved that the kids are both feeling better. My wonderful friends have all offered to help, I made the red beans last week and froze them, and I picked up the King Cakes today (yes, there is 1 bakery in Delaware that makes them!).

Tomorrow morning I'll make the jambalya, then just rest up for the party. The boys love to handle the decorations (I'll post pictures next week - this one is from '06), and Ken will run some last-minute errands. Pacing and lots of help! Being able to still hold up this tradition (in a modified form) really makes me feel good - I'm looking forward to having our friends over tomorrow.

Check out NOLA.com for full Mardi Gras coverage and live webcams of the parades this weekend through Tuesday! And, for a real treat, order some Zapp's potato chips - the cajun crawtator and cajun dill are the best flavors!

And if you're interested in reading about New Orleans, check out the link at my latest book blog posting - this book sounds wonderful. (plus, I posted a new book review yesterday)

Enjoy your weekend and Laissez Les Bon Temps Roulez! (aka Let the good times roll)

Good-bye, Lyme Disease!

I drove to NJ today to see the Lyme specialist again. I've now been on the double-dose of antibiotics for 10 weeks (plus 2 months before that off and on a regular dose) and haven't had any Lyme symptoms since about 8 weeks ago.

He thinks I'm cured!

The guideline is to stay on antibiotics until 6-8 weeks with no symptoms, so he says I can go off the medication now, and we'll see what happens. I only have 5 days' of pills left, so I'll probably finish them, just to be safe. Back in the fall, I was at this point (symptom-free), went off the antibiotics too soon, and my symptoms came back, but I think this latest round did the trick.

Too soon to celebrate yet - until I'm off the antibiotics for good - but this is very good promising news!

Post-Weekend Rest

I made a decision to just rest today and not even attempt any work after our weekend of traveling to see family. I caught a mild stomach virus from my little nephew, so I needed to just take it easy today.

We drove to Connecticut for my niece and nephew's birthdays (they were turning 7 and 3, respectively). It was very nice to see everyone, and I actually did quite well this weekend (until last night). My 11-year old son, Craig, didn't fare so well. He woke up vomiting at midnight Friday night at my Mom's house - his fourth stomach virus since Thanksgiving! My poor husband spent yet another night sleeping on the floor of a relative's house next to him.

Craig was doing better after napping on the way to my sister's house Saturday, so he was able to enjoy his cousins' pool party, but by evening he felt rotten again. By then, my sister realized that my nephew was sick, too. He had a 101 fever and was still running around playing! Ah, to be 3 again...

By Sunday, Craig had developed the same upper respiratory infection Jamie and I had the past two weeks, and by Sunday night, he and I both had stomach cramps and....I'll spare you the rest of the details!

Despite all of that, I'm glad we went. It brings me such joy to spend time with my niece and nephew. My nephew, in particular at this age, is so full of joy and excitement! He was so happy to have all of us there and is such a sweet and loving (and highly energetic!) child. And guess what song he was singing at full volume - with dance moves - all weekend? "I Like to Move It, Move It" from Madagascar! He must have been reading my blog last week.

Working Hard

I've been feeling very good this week and have been able to work on several writing goals, so I thought I'd share some of my latest work with you (don't worry - I'm taking time out for fun, too!)

• I've launched a new book review website, Great Books for Kids and Teens. I plan to post new reviews to it at least once or twice a week, so please tell the young people in your life!
• I added a new book review to my grown-up book blog, Book By Book, too.
• I updated my writer's website, including my page on CFS (though there's still more I'd like to do with this page).
  
• I discovered that an article I wrote on CFS appeared on the Lively Women website last fall (somehow I missed it!)
• And I pitched a brief CFS article to a major women's magazine. I'm hoping to expand my freelance writing into health, especially CFS. I'll let you know how it goes!
  

And She'll Have Fun, Fun, Fun....

It's time for a new attitude! I need to get back to focusing on what I CAN do, instead of what I CAN'T do.

I really appreciated all of the great comments you've left on my last blog entry, about having fun. And reading all of them made me realize something. I don't think that having CFS is really my biggest problem when it comes to not having enough fun. My problem is the same as it was before I got CFS: I feel like I should always be doing something productive. So, when I have unstructured time, like on the weekends, I'm always trying to cross items off my to-do list, instead of just relaxing. I feel guilty if I'm not accomplishing something. CFS has actually helped me in this respect; I now accept that there are times when I need to just rest and do nothing. But I still have trouble relaxing if I'm feeling well. And isn't that just silly? Baby Blues, my favorite cartoon, says it best. Maybe this is something all Moms struggle with:



So, I am recommitting myself to my goal of making time for fun each day. And, since I often don't know what to do, if I'm not working down that to-do list, here is my list of FUN things I can do:

• Take a short, easy walk, alone or with friends or family
• Play a game with my kids
• Read for fun (not just at naptime or bedtime)
• Watch a movie or a favorite TV show
• Work on a jigsaw puzzle
• Do a crossword puzzle
• Play a computer game
• Call a friend, just to chat, without a purpose
• Invite friends over for take-out or lunch or dessert
• Meet a friend for lunch
• Browse the sales racks at a favorite store, when there's nothing I need
• Sit on the deck with a book when the weather is nice
• Go out to dinner with Ken
• Play with iTunes and discover new music
• Take a short hike at a local park

So, last evening, instead of burying myself in my laptop as usual, I played games with Craig (pick-up sticks, Pay Day, and Jenga) and worked on a puzzle with Ken. And I had fun!

I know, I know. It's pretty sad that I need to make a list in order to have more fun, but it's progress for list-addicted, over-achieving me! Baby steps.

Girls Just Wanna Have Fun

One of my goals for this year was to make more time for fun, but I don't think I'm doing a very good job at that so far. I'm kind of weary of my weekend routine.

We tend to be very kid-centered: our kids have lots of fun on the weekends! They're at an age when they want to spend a lot of time with friends, so when the weekend comes, we drive them to various events and (more often) host their friends at our house to play or spend the night. Believe me, I'm grateful that they are now well enough to have such active social lives, and I've always been happy that they like to have their friends at our house. I just think that maybe I'm losing sight of my own needs.

During the week, I have a routine that works very well for me. As long as both boys are well, everyone is out of the house by 8:15 am, and I have a full four hours of productive time before I have to stop for lunch and a nap. As you know, four hours of productive time is amazing for someone with CFS! Even if I'm not feeling well, I can usually still lie on the couch and catch up on reading, keeping a list of what I'll do when I'm upright again.

On weekends, my time is compressed. I stay up later with my husband, watching a movie or favorite TV shows that we taped during the week (since we go to bed at 9:30 most weeknights!), so I need to sleep later in order to get my required minimum of 9 hours of sleep. Then I make a big breakfast. It seems like just a couple of hours later, it's already time for my nap. Once I get up, it's time to start making dinner. So, my weekends feel full of just rest and cooking.

Complicating matters is, as always, CFS. We start with fewer hours in a day than healthy people. When I think of what I'd like to do on weekends, my top choices are things I really can't do - take a hike with the family, do something active outdoors, even going to the movie theater (a rare treat) is tiring and difficult to schedule around my rest time and my need to eat at regular intervals to stave off low blood sugar. I'd also like to have friends over more often, but I need to be in tip-top shape for that kind of exertion.

Somehow, though, I need to make more time for fun for myself. I guess that won't be a problem for the next two weeks because we have full weekends coming up, with travel to see family and our annual Mardi Gras party (I have my fingers crossed I'll be in good shape for it!).

So, what's a girl with CFS to do? How do you have fun?

I Like to Move It, Move It!

(I just love that song from the movie Madagascar!)

I'm feeling better and getting caught up after my week-long crash. Just some mild congestion left, but my energy is back. I even went skiing today! Now don't get too excited. By "skiing", I mean that I wiped the cobwebs off my cross-country skiis and boots, strapped them on, and took a few laps around my house in the quarter-inch of snow left from yesterday. I can't imagine what my neighbors must think!

Those 10 minutes of skiing left me out of breath (though happy!) and worrying that I might have done too much. How crazy is that?

Before you knew about CFS, would you ever have believed there was an illness that made exercise BAD for you? I wouldn't have. It's just surreal sometimes, isn't it? We're surrounded with advice and admonitions - from TV, magazines, the internet - that we have to exercise more in order to be healthy. Not a day goes by that I don't read or hear of another benefit of exercise. It just seems insane to me that something that is so good for the rest of the population can make me so sick. My mom was telling me this weekend that one of the reasons she loves her Jazzercize class is because being with other people motivates her to work harder and helps to get her heart rate higher. I said, "That's exactly why I can't go to a class!" We laughed, but it's absurd, isn't it?

For me, the exercise intolerance is at the heart of CFS. It is the single aspect of this complex illness that affects my life more than any other (I'm very fortunate to experience almost no cognitive dysfunction). Before I had CFS, I was very active and LOVED to exercise - hiking, biking, aerobics classes, dancing, weight training...I loved it all! I loved the feeling of moving my body, breathing deeply, feeling alive. I miss that so much. When I daydream of being well again, that's what I think about - all the active things I want to do.

I'm grateful that, on a good day, I can take a slow walk or do 30 minutes of gentle yoga, but I yearn to move without limits again. The toughest part is that the response to exercise is delayed. I could do much more - and enjoy it! - but then I'd be flat on my back for a day or two (or more). It is so hard to hold myself back on days when I feel good.

I just keep hoping that some CFS researcher is going to discover the secret behind exercise intolerance and how to treat it. Maybe? Someday?

Very Sick

I've been very sick all weekend. It seems that I actually caught a cold (or some sort of virus). That's rare for me. Usually my over-active immune system responds to viruses with a brief crash, but I don't actually catch anything. This is a bad one, though. I've got some pretty heavy congestion, especially in my chest. I'm worried about bronchitis, but this mega-dose of antibiotics I'm still on for Lyme should protect me - I hope.

My Mom and her husband were here for the weekend, and we had a fun Superbowl celebration last night. I had to spend most of the weekend resting, and I still felt terrible - just completely exhausted, plus the congestion and cough. I did manage to play PIT with the family Saturday evening and a game of Scrabble with Jamie and my Mom on Sunday, but even that wore me out. They left this morning, and I have pledged to spend all day on the couch today resting. In fact, that's it for computer time for me today - time to put the laptop away.

Rest, rest, rest.

Feed a Crash

You know that old adage, "Feed a cold, starve a fever"? Well, I feed my CFS crashes! For reasons I don't understand, when I'm badly crashed, I want to constantly EAT. I spent the past two days on the couch with a classic CFS crash - sore throat, achy, exhausted - and I noticed again that I have an urge to eat when I'm that sick. Is it a biological thing, like my body isn't producing enough energy so I crave more fuel? Or maybe it's just an emotional thing, that I want to eat favorite foods for comfort? Or maybe I'm just bored! I don't know. Anyone else crave food (or certain foods) when they crash?

Anyway, I'm feeling a lot better today. I think this was "just" a regular crash and not a new herx from Lyme treatment. Both boys had some congestion earlier this week, so there was probably a virus lurking around to trigger my crash. This is one of the biggest improvements I've seen in the past year - fewer crashes and when I do have one, it doesn't last very long, thank goodness.

Time for my nap. We have a busy weekend coming up, with my mom and her husband coming to stay with us and celebrate Superbowl Sunday (no school on Monday, so the kids get to stay up for the whole game for the first time ever!)

Have a nice weekend!

Snow (and ice and rain) Day!

The boys were thrilled to FINALLY get a snow day today. Delaware hasn't had much snow so far this winter. We only got a few inches last night, and it turned to ice, then rain today, but they made the best of it. They spent the whole day outside, building this cool fort (Craig is straddling the edge and Jamie's in the middle). I hope the rain doesn't wash it away too soon. I also hope that neither of them crashes from the exertion, but sometimes you just have to let them have fun! Jamie's chugging Gatorade, and Craig (who is REALLY sick of Gatorade) is having a Cup of Noodles. Those things have 1180 mg of sodium!! Wow, that should do the trick. Keep your fingers crossed that he makes it to school tomorrow. Jamie's school is closed anyway tomorrow, so I'm not worried about him (he already missed Monday after an active weekend).

I've spent our snow day flat on my back on the couch. I'm feeling crummy - achy, sore throat, the works. It might be from the trip to Target I made yesterday (always a big event for me!), but I'm worried it's something else. The Lyme doctor was pleased I was doing so well and asked me to try a supplement that's antibacterial. He said if I respond to it, it could mean there is still some lingering Lyme or some other co-infection not identified in the blood tests. I started it earlier this week and haven't been doing too well since. I'm pretty bummed. I don't know if I can take another multi-week or -month run of herxing. But, of course, if there is any lingering infection, I want to get rid of it. I hope this is just from the shopping...we'll see. At least I've had plenty of time to read today.

Favorite Books of 2008

If you like to read, check out my list of favorite books I read in 2008 at my book blog. And I'd love to hear about your favorite books!

Research Paper Announces Test for CFS

I saw a very interesting new paper published recently in the UK, defining CFS as a mitochondrial dysfunction and identifying a test doctors can use to help diagnose it. Personally, this seems to be a bit of an over-simplification to me, not addressing the immune system and nervous system dysfunction, but it's still a huge step forward in viewing CFS as a real, physical ailment with characteristics that can be tested.

My favorite line in the explanation of the study:

"A useful analogy is to compare your body with your car. The mitochondria represent the engine of that car, the diet represents the fuel that goes in the tank, the thyroid gland represents the accelerator pedal and the adrenal gland the gearbox of that car. Using cognitive behaviour therapy or graded exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever."

Goodbye 2008, Hello 2009

I know it's a little late for New Year stuff, but I got a slow start this year. So, this week, I finally had time to sit down for my annual review of last year and look forward to a new year. I don't set resolutions, but I do like sitting down at this time of year to write a couple of pages about the year just past and set goals for the new year. I've been doing this for about 10 years, and it helps me to put things in perspective and to set priorities.

All in all, despite spending the past 5 months battling Lyme disease, 2008 was mostly a good year for me. During the first 7 months of the year, I felt better than I had in the past 7 years, since first getting sick with CFIDS, thanks to anti-viral treatment and low-dose naltrexone. Best of all, I was able to be more active and do more, and it was a wonderful treat after being sick for so long. I still experienced periodic crashes but less often and much less severe.

Of course, the past 5 months have been rough, with Lyme, but hopefully that's behind me now (I'm still on antibiotics but am Lyme symptom-free now). I'm looking forward to a good 2009.

I also set goals for 2009 this week. My perpetual problem - even before CFS - is trying to do too much. I always have lots of ideas and plans but have trouble finding the time and energy to tackle all of them. Obviously, this problem was greatly exacerbated with CFS! Last year was a breakthrough for me because I felt so much better. I was able to start lots of new writing projects and do some things I'd been planning for years. I didn't see a lot of results in 2008 (or new income), partly because I was so sick the last 5 months, but I got a lot of things started that I hope to follow-up on this year. So, I'm feeling a bit overwhelmed by the sheer volume of what I'd like to do but mostly optimistic about the new year.

And that horrible mess pictured here? Ah, yes, that's my desk, covered with stacks of paper. First of all, I hope to get it cleared off, so I can start the year a bit more organized. I posted the picture here so I'd be shamed into doing something about it! I finally got a start today. So, I'm feeling ready to start the new year!

Life Goes On

We're back home after driving to Rochester, NY, for my great-uncle's funeral. It was a rough trip because my 11-year old son, Craig, got sick with a stomach virus while we were there. Poor kid - it's awful to be that sick when you're away from home.

I'm glad we went, though. It was good to be with my family, and I think it's so important to expose kids to the traditions and rituals surrounding a family death. It's good for them to see that life goes on and to experience the coming together of family to celebrate someone's life. We looked at old family pictures (yes, I finished the slideshow in time!), told stories, shared memories, and even laughed. After visiting hours at the funeral home, my whole extended family (what's left of us) went to a Ukrainian restaurant for dinner. My great-grandparents came to the U.S. from the Ukraine, and my great-uncle Charlie was the last of their kids. It felt right to be celebrating his life with traditional foods.

We don't live near any of our family, so it's extra-important to me to include my kids in family traditions and to show them how to draw comfort from family when you lose someone. Unfortunately, we've had too much death in our family recently. I think my Uncle Charlie was the 9th person we've lost (in my family and in Ken's) in the past 6 years. I hope that these experiences will help my kids when they're faced with the death of someone very close to them. I was devastated for many months when my grandmother died when I was 10.

So, anyway, here we are back home, but my life still feels in limbo. How can it possibly be January 15 already?? Our house is horribly cluttered, and all of my optimistic plans to start the year off clean and organized have been put on hold. We got back Monday night at 11 pm, and Craig's birthday was Tuesday! Since then, I haven't felt well. Besides the obvious stress and extra exertion, I think I may have a touch of the stomach virus Craig had. My over-active immune system has fought off the worst of it, but I've had some stomach cramps and nausea, in addition to the CFS exhaustion and achiness. I'm able to sit up and use the laptop this morning, so I'm hoping I'll come out of this soon.

THEN, I'll start the new year off right!

On the road again...

Oh, what a week it's been! I had such good intentions of starting the new year off right - clearing off the counters and my office, reviewing 2008, and setting new goals for 2009. It's all had to be put on hold.

My great-uncle died this week. He was 92 and died peacefully in his sleep of late-stage Alzheimer's. He lived a good, long life, so that makes his death a bit easier to bear. We've lost many family members to cancer in the past few years, and those were much tougher.

I've somehow become the family chronicler of life and death, ever since I first made a commemorative DVD of photos after my godmother's death a few years ago. So, my mother and uncle have been sending me pictures, and I've been scanning and creating a DVD this week. As my uncle said, we're all getting just a little too efficient with this process. So, I have to really hustle today to finish the photo slideshows. We leave tomorrow morning for Rochester (an 8-hour drive) for the funeral. My husband is not too thrilled to be driving to western NY (i.e. the snow belt) in January. He's a southern boy.

Here's a classic story of my Uncle Charlie: After he got Alzheimer's, he was living in assisted living, and we tried to visit whenever we were in Rochester. So, about 5 years ago, we picked him up and spent the day with him. We went to the zoo (he used to love to walk) and took him out to lunch and had a very pleasant day together. The next day, my uncle called him and said, "So, did Sue and her family come to visit you yesterday?" And my Uncle Charlie said, "No, Sue wasn't here, but I spent the day with a really nice family!" Obviously, that's the Alzheimer's talking (we DID re-introduce ourselves when we first arrived), but it also shows the kind of sweet, happy way that my uncle approached life. He had no idea who we were but enjoyed spending the day with us! He loved life and had the greatest laugh. Not a bad legacy to leave behind.

Wear Bug Spray!!

Just a quick note...I went for another short hike with my friend this morning, and she called me later to say she found a tick on herself. Conventional wisdom is that you don't have to worry about ticks once there's been a solid freeze, but that is obviously not so! (at least not here in Delaware, where it doesn't stay below freezing in the winter). In fact, my friend is a veterinarian, and she says she's still seeing ticks on dogs, too.

So, be sure you and your family wear bug spray with DEET when you spend time outdoors!

My recent experience with Lyme disease may have left me a bit overcautious, but you know what they say - it's not paranoia if they're really out to get you (i.e. the ticks)!

Happy New Year!

I just came back from an invigorating hike with a friend - a great way to start my new year! I'm still on a double-dose of antibiotics for the Lyme disease I contracted in July, and it's still working very well. I've had almost no knee pain the past few weeks and have had great energy most days! I have a check-up with my Lyme doctor on Friday. My stamina is pretty low after being so sick for almost six months, but I started taking walks last week and am trying to slowly build up. It feels so good to be able to move again. I feel like I am back to where I was during the first six months of 2008, after successful anti-viral treatment (almost two years now on Valtrex, then Famvir) and low-dose naltrexone. I certainly still have CFS, but my energy is much better and I can do more than I could in the past 7 years, since getting CFS.

We just returned from a week visiting my in-laws in Oklahoma. It was a tough visit because my mother-in-law now lives in a nursing home due to advanced Parkinson's disease. She really hates how incapacitated she has become and wants so badly to return home, but she can no longer stand on her own. My father-in-law brought her back to the house for two visits a day while we were there. I spent the week cooking, cleaning, and shopping. I was glad to be able to help her, but we can only afford to visit twice a year. We feel pretty helpless the rest of the time.

My mother-in-law was one of the only people in my life who "got" my illness right from the start, probably because of her own struggles with Parkinson's. There are some similarities that we share - fatigue, sleep dysfunction, limited energy. Of course, she's now far worse than I am, but we still both take a nap after lunch every day. I just wish there was more I could do to help her, but it's hard from long-distance.

Our boys are doing well and had a great time in Oklahoma. They have a good friend who lives next door to their grandparents, so they have fun even on a visit like this when we're mostly just staying at home. Craig had a stomach virus right before we left that triggered his CFS to worsen for about two weeks. He would feel fine during the day and then crash every evening by about 6 pm. Thankfully, that ended a few days ago, and he seems back to his usual energetic self now, even in the evening. We've always celebrated New Year's Eve early - usually at 8 or 9 pm - with our boys because they need lots of sleep because of their CFS, but we set a new record this year. My mother-in-law can't make it past 7 pm most evenings now, so we did our New Year's Eve celebration at 6:30 pm!! It was still fun. And for the first time in years, I stayed up late enough to see the ball drop on TV...OK, so it was only 11 pm Central Time in OK, but it was midnight in my home time zone! I was quite pleased.

A bright spot during my visit was the chance to get together with my best friend from high school. In a very strange coincidence, both of us (from Rochester, NY) ended up marrying men from Oklahoma! She works as a physiatrist (a pain specialist) in Oklahoma City, so I get to see her twice a year when we visit. We had a wonderful dinner together. There's nothing like spending time with an old friend. In a shameless bit of promotion, I will also mention that she's written and published a Christian weight-loss book that's now available through amazon. I'm so proud of her! Check it out at the link below.

So, now I'm back home and ready to start a new year. Here's to a happy and HEALTHY 2009 for all of us!

Merry Christmas!

I've been crazy busy, as I'm sure everyone has this week. We had a really hectic weekend. We had planned to drive to Connecticut Friday when the kids got out of school to celebrate Christmas with my family there. Thursday afternoon, we learned there was a huge snow & ice storm predicted for Friday, so within a couple of hours, we packed up and left by Thursday evening! It was all very last-minute, but it worked out. My sister and I both made it to my Mom's house, and we all spent two days together. Then we had to hurry up and drive back Saturday night before a second snow & ice storm hit! Not exactly what we'd planned, but we got to enjoy some time together. The only downside was that my 2-year old nephew came down with strep throat while we were there. So, far we're all OK but keeping our fingers crossed!

I've been feeling really good. The double-dose of doxycycline is definitely working on my Lyme. I've had great energy this past week and even managed all that hectic, last-minute packing and traveling without crashing. My Mom was amazed by how well I seemed; she said it was like having the "old me" back. I did a bit too much yesterday and am run-down today, but at least I finished all our holiday preparation yesterday and am able to just relax today. Speaking of that, it's nap-time!

I hope everyone enjoys this time with family and friends and has a very happy and HEALTHY holiday season!

Lyme Treatment Update

I spent Wednesday driving back and forth to see the Lyme specialist in NJ. It was mostly good news. This doctor is a bit strange in some ways, but he does seem to know a lot about Lyme and treats it aggressively. That's what I was looking for, so I'm willing to put up with his quirks.

All of my lab tests for co-infections came back negative (I had them all done earlier by my own doctor, but this doctor used Igenex), so that's good. My Lyme test was still not completely positive (per the CDC guidelines), but it was indicative of possible Lyme infection. That, plus my symptoms and my response to antibiotics, made this doctor certain I do have Lyme. He felt that my treatment approach is on the right track; I just stopped too soon during that first round of treatment when all my symptoms had resolved. He doubled the dose of my antibiotic (and told me to double the amount of probiotic I'm taking, too) and wants to see me back in a month. He may add another antibiotic at that time but didn't want to overwhelm my system all at once.

I've been on the double dose for just two days, and my knees started to hurt again today. That's good news! Another herx reaction means the extra antibiotic is killing off more Lyme bacteria. So, I'm very hopeful that I'm on the road to recovery (from Lyme anyway).

I'm also (finally) feeling better from that nasty respiratory virus. Wow, it was a bad one - knocked me out for over two weeks. Both boys have it also now, but they're handling it better than I did. Each of them has missed only one day of school so far (Craig was home today but is currently bouncing off the walls with energy!).

So, things are definitely looking up, and I'm finally starting to enjoy the holiday season. I even managed a little shopping at Target after my doctor's appointment yesterday! Hope you enjoy these photos of Craig putting the star on our Christmas tree and Jamie's insanely large cast for a broken toe!

Holiday Spirit

I'm trying to get in the holiday spirit, but it's tough so far. I'm still very, very sick with this awful virus. Jamie is, too, although so far he's only missed one day of school. I'm worried he's on the verge of bronchitis, though. Then, on Sunday, Craig started to complain of a sore throat, post-nasal drip, and feeling like he had to constantly cough. Jamie and I looked at each other and said, "uh-oh, that sounds familiar." He made it to school for most of the day today, but he's feeling pretty crummy tonight. His holiday concert for band is tomorrow, and he'll be totally crushed if he can't make it. I'm hoping he'll at least get through tomorrow without crashing.

My car is still in the shop, so we're really struggling to get by with just one. Not that I've been well enough to go anywhere, but I'm too sick to walk to the end of the neighborhood where the bus picks the kids up. And, to top it off, we just learned that Jamie has a broken toe (another reason I need the car to go to the bus stop!), so I have to take him to the children's hospital tomorrow morning to get a boot-thingy to immobilize it.

I don't mean to complain so much, but I feel like December is passing me by. I did manage to do some online shopping today - thank goodness for the internet! (Be sure to use iGive when you shop to help raise money for CFS research). I'm also grateful that I started shopping early this year, back in November. I was looking for bargains because money is so tight, but it has worked out well now that I'm too sick to get out.

We made our annual trek to the tree farm this weekend and decorated our tree. It's one of our favorite parts of the season, but I was so wiped out on Sunday that it was a real struggle just to help decorate it. Our best friends just called tonight and offered to host our annual cookie-decorating-Grinch-watching party. I'm very grateful for that - we usually have it at our house, but I was wondering how I'd manage this year. It's another favorite part of the holidays for us.

So, I'm trying to get in the spirit! My follow-up appointment with the Lyme doctor is on Wednesday, and I'm hoping he'll be able to finally give me some answers and some help.

The Good, The Bad, and The Ugly

Man, what a week. First, the Bad:

I've been SO sick. I actually seem to have a cold virus - very unusual for me. We must have picked up some nasty germs during our trip to Rochester (all those hugs and kisses from little cousins!!). I've been completely useless since Monday - terrible sore throat, congestion, cough, fever, plus bad CFS and Lyme symptoms.

Craig called from school Tuesday morning, just as I'd decided to go back to bed, and asked me to bring his drum kit to school for band. I dragged myself out to the car - in sweats, looking and feeling awful - and my car broke down half-way to school! I had to wait for a tow truck and a friend who rescued me. Now it looks like another $400 repair for my car. The worst part? The office secretary got mixed up and there wasn't band practice that day after all!

The Good:
There have been a few brief flashes of goodness this week. As I sat by the side of the road on Tuesday, a truck made a U-turn and pulled up behind me. It was our appliance repairman - who we only see about once a year - stopping to see if I needed help. He recognized my car and remembered me. What a nice guy.

We had a nice surprise on Wednesday, delivery of one of those fruit baskets that looks like a flower arrangement! Jamie and I had helped an elderly neighbor who fell a couple of weeks ago, and she sent this wonderful gift as thanks.

Best of all, even though I've been terribly sick, the kids both had a good week. Jamie was home sick just that one day, bounced back quickly, and went to school the rest of the week. Craig just had a sore throat one morning but felt fine by afternoon and didn't miss any school. Sometimes this crazy, over-active immune system works in your favor!

And the Ugly?
Ah, that would be me - still in the same old, baggy sweats, with matted hair from lying in bed all day, and in desperate need of a shower. Ew.

Here's to a better weekend and a better next week!

'Tis the Season!

No, not THAT season....the season for germs and viruses!

Jamie is home sick today. He felt terrible last night, with headache, sore throat, nausea, vomiting, etc. Craig has a sore throat but went in to school today. And I was very, very sick during our entire trip to Rochester. At the time, I thought it was just the Lyme, but it seems that there was probably a virus triggering my crash and activating the Lyme.

I was glad to see my family and friends, but it was a very difficult trip for me. Anytime that I wasn't at some event or gathering, I was in bed at my Dad's house. All of the social interaction was completely exhausting to me. It was one of those times when I felt like I was inhabiting a different world than everyone around me. That can be so surreal, when everyone else is talking and laughing and enjoying themselves and you feel like some sort of zombie in their midst. I did my best to enjoy their company (and it was good to see everyone), but I was in constant pain and discomfort. By Saturday evening, after a 5-hour cabin party at a local park with my extended family, I just collapsed into bed and cried. Definitely a low point.

The 8-hour drive on Sunday was just what I needed, though - quiet, calm, and no exertion at all. We listened to a great audio book and napped, and I felt much better on Monday. Jamie seems a bit better this morning, too, so hopefully he'll rebound quickly. One more week of waiting, and my lab results for Lyme and other tick-borne infections should be back. Then, I can get the right treatment(s) and hopefully get back to where I was before Lyme. Meanwhile, there is another season to prepare for - Christmas is only 3 weeks away - yikes!