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!

Happy Thanksgiving!

I am grateful for:

• Being well enough to visit my family this week
• My husband and my sons
• Having such wonderful, caring friends
• The chance to see an old friend this weekend
• Antibiotics, anti-virals, and low-dose naltrexone!!
• The support and caring I've received from all of my virtual blogging friends - thank you!

We're off to visit my family in my hometown, Rochester, NY. The kids are so excited about the snow! We have a full schedule, as always when we go there, but I think I've built in enough rest times that I should be able to manage OK. I'm really looking forward to seeing all of my family and my best friend from elementary school.

Hope all of you have a happy and healthy holiday and are able to enjoy time with your families!

Wonderful Novel About CFS

I recently read a wonderful new novel about a woman living with CFS by fellow blogger Nasim Marie Jafry. Her book (her first novel) is called The State of Me, and it begins with a vibrant young college student named Helen. You can read a full review of the book on my book blog.

The author artfully blends information about CFS/ME with an engaging, warm novel about life and love. The book was published in the UK but is available through amazon (there's a link under my review).

Hope you enjoy it as much as I did!

I Want to Live!

Yesterday, as I was driving (90 minutes each way) to see a Lyme specialist in New Jersey, I was listening to music on the radio and enjoying the sun's rays, and I just suddenly thought to myself, "I want to live!" I don't mean live in the sense of not dying but live in the sense of enjoying my life. This means that my will and my energy and my drive have returned once again! After three long weeks of being mostly bed-ridden and helpless due to a severe herx reaction from my Lyme treatment (plus a CFS crash on top of that), I am finally feeling like myself again. I did laundry today! I caught up on my e-mails. I went to my favorite local bookstore (and discovered it's going out of business - see what I missed?). And here it is, late afternoon, and I'm still upright and working on my laptop. It feels so good to feel like me again.

Not much news from the Lyme specialist. He wouldn't comment on the adequacy of my current treatment until he gets the lab results back, although he agreed that given my symptoms and my response to doxycycline, I definitely have some sort of tick-borne infection. And, since I went through another 3-week herx and am now starting to feel better, with my joint pain abating again, that makes sense.

But he was one of THOSE doctors...you know the type. When I explained that I've had CFS for over 6 years, he smirked and said, "Of course, you know that CFS isn't a real diagnosis. It just means they haven't figured out what's wrong with you yet." Arrgh!! I tried to explain that although many different infections can trigger CFS to start, there's been a lot good research in recent years documenting very specific immune dysfunction in people with CFS... but you can't change the minds of people like him. On the way home, I wondered if I'd just wasted $1000 that we don't have ($300 for the visit and $600 for the lab work), but if he can document my diagnosis with concrete lab results (he sent my blood samples to Igenex and MDL - two well-known Lyme labs) and recommend treatment to get rid of it for good, then it will have been worth it. I would be happy to "just" have CFS again.

So, while I wait for my latest lab results to come back, I will concentrate on living my life! I want to:

• Feel the sunshine on my face
• Listen to great music
• Read wonderful books
• Enjoy the company of my friends and family
• Cook and eat delicious foods
• Live!

One of my biggest dreams at the moment is just to be able to take a walk again, and I think I might be back to that point by the weekend. We'll see. For now, it just feels good to be inhabiting my own body again, instead of constantly battling pain and exhaustion in an endless series of naps. I'm glad to be back!

Living the Horizontal Life

I expected to be feeling better by now, but I'm still very, very sick. I've been living horizontally for weeks now, lying on the couch and in bed, rarely able to accomplish much upright. I'm in the recliner with my laptop now, but even that is too much for me. My throat's hurting more and more, and I know I need to go lie down again in a moment. This is getting old.

Apparently, this is not only a herx reaction to my Lyme treatment, but also a classic CFIDS crash - a double whammy. I skipped two doses of my antibiotic, in an effort to relieve the symptoms of the herx reaction, but I was still left with a throat so sore it feels like I swallowed barbed wire and flu-like aches all over. I'm guessing I was exposed to a virus - one of the many that my sons and their friends have probably brought into the house!

I have an appointment next week with a Lyme specialist in New Jersey, about two hours away, just to be sure that the treatment I'm getting is adequate. The first doctor I called - someone my family doctor recommended - charged $900 for the first visit!!! Can you believe it? Now, the $300 charged by the one I'm going to see actually seems reasonable. It's insane. They said that lab tests will probably cost another $600. The financial stuff has been another huge stress lately - our cash reserves are pretty much wiped out from medical expenses. I'm sure that stress hasn't helped me feel any better.

There's been one bright spot in this dark period. A friend of mine came by yesterday to offer some company. She brought food for lunch, plus enough for a dinner for my family, and I really enjoyed talking with her. It was just what I needed. I feel blessed to have a friend like this.

I'm trying to remember to be grateful for what I have. I had a few days earlier this week when I felt depressed and overwhelmed, but I'm trying to stay positive now. Through all of this, I am aware that there are plenty of people with CFS who feel this bad all the time. I know I have been fortunate to have some good periods. But it also seems so unfair that when I finally found some treatments that help with CFS, I got Lyme disease.

Today, I am trying to completely give in to being sick and rest completely (as soon as I finish this blog entry!). I know that I've been kind of fighting against my body by trying to still get things done and just making myself sicker. So, I'm giving up for the rest of the day. I'm going to watch a movie (something that I'd normally consider a waste of time during the day) and rest, rest, rest.

P.S. How bizarre is it to have to work hard at resting?? Life with CFS is just surreal sometimes.

Setbacks and Starting Over

Well, here I am once again, flat on my back and horribly sick and trying to think in terms of mentally starting over. It seems that CFS is just that - a never-ending series of setbacks and starting over. The only constant is constant change; as soon as you get used to being in a certain state, it shifts again.

I have been mostly bedridden for the past week, going through a severe herx reaction from being back on antibiotics for Lyme. The only reason I'm able to sit up with my laptop briefly this morning is that I forgot to take my evening dose last night, so I feel slightly better - temporarily. I just took my morning dose, so I should be feeling crappy again by afternoon. Something to look forward to! I know the herx reaction means the antibiotic is working, but it's hard to think positively when I feel so bad.

I spent my weekend taking naps and trying to watch some of my sons' soccer games. That's all I did, but by 5 pm on Sunday, I felt terrible - severe sore throat, achy all over, exhausted, with pain in my knees. I've been resting as much as possible, trying to keep up with my family (with my husband's help), and escaping into fiction. Thank goodness for books, movies, and favorite tv shows!

To make matters worse, we're struggling with Craig's teacher right now. He's being difficult about helping Craig make up work he missed when he was sick last week, and he tends to talk to his students in a sarcastic, mocking way that Craig finds very upsetting. When Craig asked him what assignments he still needs to make up, he said, "Oh, come on, Craig." That was it - Craig still doesn't know what he's supposed to do. I really do not need this kind of stress right now - I know it's only making me sicker. If it weren't for Ambien, I wouldn't have slept at all last night.

So, I'm trying hard to get back into a positive frame of mind. Starting over. Working my way back to hopefully feeling "not so bad" again someday. Trying to take things one...day...at...a...time.

Happy Halloween 2008!

Well, it's been a rough week for us, but we made it to Friday and Halloween! We really get into the spirit of celebration on Halloween - it's one of our favorite days of the year. And we really needed this day of celebration this week. Here we are, ready to go out trick-or-treating - Ken as Frankenstein, Jamie as a zombie, Craig as a mummy, and me as a witch! Ken and the boys are still out in the neighborhood, with a couple of friends. I did my usual few houses near our cul-de-sac and came home to put my feet up.

I'm back on antibiotics for Lyme and seem to be having a herx reaction (the initial worsening when treating a long-time infection) - I've felt pretty crummy for the past few days. I got depressed this week when I realized the Lyme was not completely eradicated - and may never be. A local friend who heads up the Delaware Lyme Support Group helped me a lot, with both advice and emotional support. I was also deeply touched - and greatly helped - by all of the wonderful, caring comments you left on my blog this week. Those comments meant so much to me at a time when I felt so alone. Thank you!

Hope you had a fun Halloween!!

A Bad Day

One of my blog readers recently remarked about how I seem to have a great, positive attitude and always seem optimistic. I'm not feeling like such a sunny optimist today, though.

Ever have one of those days (or two days) when everything seems to go wrong? The past 24 hours have been really rough for me. For starters, I was very sick this past weekend and am still not back to where I usually am. By Monday, I was doing a lot better, but my 10-year old son, Craig, crashed. When two of us at a time crash, it usually means there's a viral trigger around somewhere. So, Craig's been home from school all week, though he did manage to go in for the last few hours today.

I had to take my older son for x-rays yesterday after school. He hurt his elbow playing soccer a couple of weeks ago, and it doesn't seem to be healing, so the doctor said to take him for x-rays. On our way home - in freezing cold rain and heavy winds - I went around a curve in the road and suddenly felt the car lurch out of my control. I tried to brake and to steer, but the car seemed to have a mind of its own, and we hurtled off the road, over a curb, and finally stopped in some bushes.

It was terrifying, and all I could think about was that the boys were in the car with me. I backed out of the bushes and pulled forward, back down off the curb (probably a mistake in hindsight), and to the side of the road. The right front tire was blown, which is probably what caused me to lose control of the car. Since I drive a very small, low car (a 92 VW convertible), and it was a high curb, I decided to have the car towed to the dealer, just to be on the safe side. I also wasn't entirely sure whether the blown tire caused the accident or whether something else had gone wrong and the tire blew on the curb.

Fortunately, we were all fine, just shook up. My husband arrived shortly after the tow truck, and we finally went home. The service manager called me today - it's going to cost $650 to fix my car (two wheels and another part were damaged, plus the tire). As with most people these days, money is very, very tight right now. I just sent a pile of medical receipts into our Flexible Spending Account to get the remaining $800 out. Some of that was going to be for Christmas presents - now most of it will go into just keeping my car on the road.

Then, I woke up in the middle of the night, with severe pain in my left knee. The knee pain has been bad all day long. I just finished my antibiotics for Lyme a few days ago, but it looks like it may be back. Of course, the stress of yesterday's accident almost certainly caused a CFS flare-up, but knee pain for me has been associated with Lyme, not CFS. Ironically, just today someone sent me a study about how Lyme bacteria can linger in tissues long after antibiotic treatment. So, I just got off the phone with my doctor, and she wants me to go back on doxycycline for awhile longer. This was really the last straw today. I thought I was through with Lyme and back to "just" living with CFIDS. I really just lost it earlier today at the thought that the Lyme is still there, hiding in the tissues of my knees.

I know I have some things to be grateful for. Craig went back to school today. No one was hurt yesterday. If the left tire had blown instead of the right, we would have been propelled into traffic instead of off the road. I know we're fortunate it wasn't worse. But our money situation just gets worse and worse, and the Lyme still being present is overwhelming to me right now. Not feeling very positive or optimistic today.

D-ribose?

Has anyone tried taking D-ribose supplements?

I've read about this natural sugar supplement for improving energy in CFS and fibromyalgia from several different sources. I've been meaning to try it for a few months, but there have been too many other things going on - finishing Valtrex, starting Lyme treatments, etc. Now I'm finally at a point where things seem stable (for the moment!) and my underlying infections have been treated, so I'm going to try it.

From what I've read, D-ribose is normally synthesized by a healthy body to help rebuild energy. Since CFS messes up our metabolism and energy production, our bodies can't make enough D-ribose on their own. I've read about many people with CFS and FM who say D-ribose helped.

So, I just ordered some of the powder, and I'm going to give it a try. I'll let you know how it goes. Has anyone else tried this? If you have, I'm interested to hear if it's helped or not.

What Is Energy?

I've continued to feel mostly good this past week - still no sign of the Lyme recurring. I have been super-productive lately, catching up on insurance paperwork (mainly because we desperately need to get back the money due to us!) and showering my editors with new ideas for articles and reviews. I still feel my mid-day slump, from late afternoon till early evening, when I need to take it easy, but by evening, my mind is in high gear again. I lie in bed thinking about all the new projects I want to start, composing various writing pieces in my mind, excited about waking up in the morning to a new day full of new possibilities.

It occurred to me last night that energy and its nemesis, fatigue, are about so much more than simple physical capability.

When CFS flares up and I am crashed, my brain feels like it's filled with molasses. There are the physical symptoms - sore throat, flu-like achiness, exhaustion - but there is also a mental exhaustion. In this state, I am almost incapable of writing at all, let alone putting together new and creative ideas. Not only that, but I don't want to write or do anything else. When I am badly crashed, all of that mental energy disappears. There are no new ideas, no eager anticipation of what to do next, no motivation to do anything at all. At these times, my mind craves rest just as much as my body. I feel dull, lazy, and apathetic.

In contrast, on a good day, I am filled with drive and enthusiasm, eager to start work each morning and frustrated when I have to quit for lunch and my nap. I am still aware of physical symptoms at these "up" times and know I have to respect my limits. I switch to writing on the laptop in the recliner when my throat starts to hurt or take only a short walk even though I feel full of energy, in order to avoid a later crash. But even with these physical restrictions, my mind feels free and full of energy.

Then there are days like today. I walked for too long yesterday with a friend at the park (I still haven't learned!) and have crash symptoms today - sore throat and aches. Interestingly, though, I still have mental energy today. Even as I force myself to lie on the couch to rest, my mind is still working at a fast pace, coming up with new writing ideas as quickly as I can jot them on the pad by the couch, eager for my body to feel well again so I can pursue my goals.

I am fascinated by this change in mental energy with my CFS symptoms. I feel very fortunate to have good days now and realize why long, severe crashes are so hard to endure - it's not just the physical restrictions but that empty, listless feeling that makes it so impossible to do anything at those times.

Interestingly, the first improvement I noticed when I started taking anti-viral medications was a mental clarity that I hadn't even realized I'd been missing (click on the anti-viral tag at the end of this blog entry to read more). I guess I assumed that the sluggish feeling that was a part of CFS was merely based in feeling poorly physically. I've heard many others on message boards mention the same experience - improved mental clarity after taking anti-virals. So, it is definitely a physical, bio-chemical kind of brain thing, apparently caused or worsened by the presence of infections. Whatever causes our well-named brain fog, I am hugely grateful to now experience large blocks of time without it.

And now, it's time to once again listen to my body. My sore throat is getting worse, even in the recliner with the laptop. Time to stop trying to work and get flat on the couch.

Lyme Disease Update

Sorry I didn't have time to write again last week as I'd promised. My husband is in Europe on business for a week and a half, so I've had my hands full taking care of the house and kids. In fact, I had to just sacrifice today to the couch and bed. By 8 am, I was already exhausted from our busy weekend!

I wanted to give you an update on my Lyme treatment - hopefully, my last Lyme update. I saw my doctor last week, and we are hopeful that I'm coming to the end of my ordeal with Lyme. I finished one antibiotic (Zithromax) and have another week left on my two-month supply of the other (doxycycline). More importantly, I'm finally feeling good again. I've now had about two weeks of feeling quite good - seems like back to where I was earlier this year, before Lyme struck. I haven't had any knee pain at all in almost 3 weeks. My doctor is not 100% convinced that we have completely eradicated the Lyme bacteria - I never did test positive on any of the tests run - but she said we'll see what happens when I finish the doxycycline. If my symptoms come back, I'll need to go back on antibiotics.

As a quick recap for those who haven't been following my blog the past few months....
I have had CFS since March 2, 2002. I got Lyme this summer; my symptoms began in mid-July. Although CFS and Lyme often have very similar symptoms, I am quite sure my Lyme was a recent infection because:

• I have never had any joint pain before with CFS. When I got Lyme this summer, I had sudden, severe knee pain.
• I am one of the fortunate few with CFS who has never had severe cognitive dysfunction, only mild symptoms, like difficulty with word-finding and brain fog when I'm badly crashed. Long-term Lyme affects the nervous system and causes severe cognitive problems.
• I was actually mis-diagnosed with Lyme back in 2002 when I first got sick. I took 90 days of doxycycline at that time, under the care of an Infectious Disease specialist, with absolutely no effect at all.
• My CFS has improved quite a bit over the past 6 years, especially in the last year with anti-viral treatment and low-dose naltrexone. Lyme left untreated with antibiotics would get progressively worse.

I had no bulls-eye rash with Lyme (only a small percentage of people do) and was not aware of a tick bite (again, many people with Lyme aren't), but we spent 3 weeks outdoors camping and hiking in June and July on our vacation. Besides, a recent CDC study showed that Delaware had the highest per capita rate of Lyme of all 50 states from 2004-2006. It's almost an epidemic around here.

The first signs of Lyme are usually flu-like symptoms, but this wasn't true for me. I felt fine until my knees suddenly started to hurt. Joint pain is considered a sign of Stage 2 Lyme Disease. My 14-year old son has had Lyme twice before, and his first symptom was also knee pain (at the same time as flu-like crash symptoms). So, I wonder whether CFS's immune system abnormalities mask those very early symptoms of Lyme.

My knees had hurt for about a month when I started antibiotics, so the Lyme bacteria had a chance to possibly penetrate my tissues. This is part of what makes Lyme difficult to treat, unless it is caught very early, and also what makes the blood tests for it so inaccurate; the Lyme bacteria does not stay in the bloodstream but penetrates tissues and "hides" there.

All in all, I took doxycycline for 8 weeks and Zithromax for 3 weeks. Hopefully, that will be it for me. We'll see what happens when I finish the doxy next week. For now at least, I'm feeling much better and have been able to resume my "normal" life. I never thought I'd be glad to "just" have CFS!

More information on Lyme and CFS here.