Tuesday, March 31, 2009

Coming Back to Life

As you can see from this photo, many of the trees here are still mostly bare, but this one tree in our neighborhood is in full bloom, a sign that things are coming back to life after the winter. I thought that was a fitting analogy today for my own life. I'm finally beginning to feel better after two weeks of being completely incapacitated with a herx/crash, and I feel like I'm coming back to life, too.

During severe crash periods like we just went through, Ken and I feel like we go into survival mode. With me flat on my back on the couch and unable to do anything, Ken comes home from work each day to work another shift - grocery shopping, cooking, doing dishes, helping with homework. When the kids are also sick at the same time - as it was for much of the past two weeks - that sense of just struggling to get through each day is enhanced. Nothing gets done except the bare minimum we need to keep surviving. During times like that, we sometimes talk about how no one outside - no "normal" people - could even imagine the way we're living. It's very isolating sometimes.

But, I'm coming back to life now and facing all the stuff that sat undone for weeks. I even took a walk around the neighborhood today (though that might have been too much!).

Jamie returned from his band trip last night. He said he had a great time and felt good the whole time! Of course, he was totally exhausted after school today...but he DID go to school which was pretty amazing. Craig was home today, after staying up until 1 am at a sleep-over Sunday night (no school on Monday), but this was just a brief post-exertional crash for him - he's already feeling better.

So, life is returning to normal - or at least, as close to normal as things get around here! Hope you had time to enjoy spring today, too.

Friday, March 27, 2009

Teens and CFS and Letting Go and Worrying

I'm still pretty sick - definitely a combination of allergies plus yet another herx reaction to Lyme treatment. It's been a very rough week, but it's finally Friday.

My sweet little baby boy (OK, he's 14 now and towers over me, but still) is away in Myrtle Beach on a trip with his high school band for four days. It was so hard to say good-bye to him last night!

With CFS, there's just so much to worry about. There's no way he'll get enough sleep on this trip. He usually goes to bed at 8 pm every night! He had to sleep on the bus last night, and lights-out time is 11 pm for the rest of the trip.

Then there's the medication - whew! What an ordeal trying to get that all straightened out. The school insisted that every medication must be in its original bottle and must be given by the band director. When Jamie went on a similar band trip last year in middle school, they let us keep his medications in those weekly reminder boxes. I tried to explain to the school nurse that Jamie takes 20 different pills at 4 different times of day, but she insisted there were no exceptions. So, despite being so sick, I spent an hour Wednesday night organizing Jamie's meds, putting them into 4 different bags according to when they're taken, and making a detailed list of everything. I just hope they can keep it straight. Then there's Epi-pens for his bee sting allergy and a huge cooler of Gatorade to keep him floating in salt and fluids!

I know I need to quit worrying. He managed just fine on last year's trip. The timing is just bad this year, since he just got over that two-week bout of virus, then bronchitis - his stamina isn't quite back to normal yet. He still has lots of make-up work, too, but his teachers have been pretty understanding.

Watching him pack up and saying good-bye last night made me think ahead to college - only 3 1/2 more years! Wow. One thing at a time. As he leaned down to kiss me last night, I said, "Stay safe and healthy, but have fun, too!" He joked, "How can I do both?" He's a great kid, and I'm really glad that he's able to go on this trip and have this kind of experience, in spite of CFIDS. I am truly grateful for that.

Tuesday, March 24, 2009

Waiting for Normal

Waiting for Normal is actually the title of a wonderful book I recently reviewed, but it's been stuck in my head all day like my personal motto.

I'm not waiting for real normal, just to get back to my own kind of normal. I'm not there yet. The boys and I were all sick last week - they each caught a nasty respiratory virus, and I was just plain crashed. Jamie's turned into bronchitis, so he felt hugely better as soon as he started antibiotics. Both boys were back in school today - hurray! That was a huge milestone, although Craig could still develop a secondary infection, like bronchitis or a sinus infection. He seems a bit better today. And Jamie was thrilled to go back today after missing 7 days in the past two weeks, but he came home completely exhausted. He just gave up on his way-overdue homework and went up to bed...at 6:30 pm!!

As for me, I still feel pretty awful. I figured I was just crashed last week because of the virus lurking around, stimulating my immune system. By the end of the week, I had a severe allergy attack - it happens a few times a year, with watery eyes, runny nose, and feeling run-down and achy. So, maybe this is still just the allergies or maybe it's my herx reaction to restarting Lyme treatment or maybe both. I am so sick of playing the guessing game. It's been over a week since I've been able to get any work done. With the house finally quiet today, I had big plans, but by 9 am, I was so achy and worn out, I gave up and went back to the couch with my book. That's where I spent the whole day.

I've missed the blogging world, as well as the rest of the outside world. I'm getting sick of the family room! I guess I better go e-mail Jamie's teacher about this assignment he couldn't finish. He may need to take an Incomplete for now and do it in the new marking period. Besides, I know I shouldn't be wasting my energy on the computer - I just don't have enough right now. Hopefully, tomorrow will be better.

Thursday, March 19, 2009

Another One Down

Did I just say yesterday that things were starting to look up?

By bedtime last night, Craig had a fever of 102, a sore throat, and congestion. Looks like he's got the same virus Jamie's had all week. So, today they're both home from school, and I'm still feeling run-down and achy. Looks like I need to cancel plans for my Dad and his wife to visit this weekend.

The three of us are lying around the family room watching Loony Tunes. We'll just lie low and take it easy today.

P.S. During my brief period of feeling better yesterday, I posted new reviews to my book blog and kids'/teens' book blog. Jamie and I have both read stacks of books this week!

Wednesday, March 18, 2009

Sick Week

Ah, so much for my optimistic outlook on Monday.

Jamie has been home sick from school all week (and also missed 3 days last week). Last week was just a CFS flare-up, but he woke up Sunday morning with chest congestion and a cough. The poor kid has been in bad shape all week - flat on his back on the couch with congestion and fever, plus all the CFS crash symptoms. He broke down in tears Sunday night and told us the aches were the worst he remembers since 6th grade (i.e. 3 years ago, before Florinef).

I took him to the doctor's today. She said it's not quite to the point of bronchitis yet, and she prescribed an inhaler to open up his bronchial passages to try to prevent infection. Hopefully, that will work.

Meanwhile, Craig and I have had what I think of as "sympathy symptoms," those CFS symptoms that come up when there's a virus around that you don't actually catch but it stimulates your immune system and makes you feel sick. Craig's managing OK - he's had a sore throat off and on for 2 days but has still been able to go to school and play.

As for me, I started out the week excited that my Lyme herx wasn't too bad and ready to attack a long to-do list. By 9 am on Tuesday, I realized I needed to put the laptop away completely and lie down. Since Jamie was on the couch, I made myself a nest of beanbag chairs on the floor and have been lying there reading most of the week. Thank goodness for books.

Obviously, since I'm back on the computer for a bit, I'm starting to improve a little, and Ken gets home from his business trip tonight, so things are looking up. Now we just have to get Jamie back on his feet.

Monday, March 16, 2009

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.

Friday, March 13, 2009

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.

Tuesday, March 10, 2009

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!

Friday, March 06, 2009


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!

Thursday, March 05, 2009

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.

Monday, March 02, 2009

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.