Here's a New York Times article published yesterday on the public outcry over holding back publication of the latest XMRV/CFS study. It's actually a very good article for a non-CFS publication! It explains the science, the controversy, and some background very clearly.
The article includes a link to a blog about treating CFS/XMRV with anti-retroviral medications, written by a CFS patient (and doctor) who is treating herself and her daughter, both diagnosed with CFS, with anti-retroviral drugs - apparently with some success. I haven't had a chance to read the blog myself yet but intend to later today - looks fascinating!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Thursday, July 15, 2010
Wednesday, July 14, 2010
XMRV Webinar Tomorrow & Update
The CFIDS Association is hosting another webinar, tomorrow July 15 at noon Eastern time. This one is an update on XMRV, with two speakers who are both top-notch CFS scientists/doctors - should be a good one! I won't be able to attend (again!) because we're having our second Mom lunch tomorrow with the other local moms who have kids with CFS, OI and/or Lyme. This time, most of our kids are coming along, so that should be fun. Anyway, check out the CAA website for full information on the XMRV webinar. If you're able to participate, let me know how it goes!
This may be old news for many of you, but there was apparently some big news on XMRV while we were away on vacation. I missed most of the hubbub (which was kind of nice), but here's the gist of it:
(I apologize in advance to my non-US readers for all of the acronyms - all you need to know is that they are ALL US government agencies) -
Apparently, the NIH and the FDA sponsored a joint study on XMRV in which they found the retrovirus in 80% of the CFS patients tested. So far, so good, right?
At the same time, the CDC conducted a study of XMRV in CFS and failed to find XMRV in ANY of the patients they tested. No big surprise - Reeves was one of the study authors and not finding XMRV supports his longheld belief that CFS is mainly psychological.
So, both studies were scheduled for publication (in different publications) at about the same time. Someone in the government got wind of this and, apparently to avoid embarrassment, they stopped the FDA/NIH study from being published but allowed the CDC one to go forward. This is when an uproar began among the CFS community.
That's where things stand currently, but everyone knows about this other study that found XMRV in CFS patients, so I don't imagine they'll be able to hold back its publication much longer. I heard the main author - a highly respected virologist - is doing some extra testing to verify his results.
If you're interested in the details behind all this, then, as always, Cort Johnson at Phoenix Rising wrote an excellent summary of the whole complicated controversy.
So, now it's time for our UK friends to think, "Wow, they're even more messed up over there than our own government is!" It seems to go back and forth, doesn't it?
As for me, I'm crashed today - sore throat, aches, pounding heart, the works. I managed through the first three days of my period pretty well, so I'm not complaining. I canceled my plans to go to my library book discussion today, but it's the first horizontal day I've had in a long time. Lots of reading today...
This may be old news for many of you, but there was apparently some big news on XMRV while we were away on vacation. I missed most of the hubbub (which was kind of nice), but here's the gist of it:
(I apologize in advance to my non-US readers for all of the acronyms - all you need to know is that they are ALL US government agencies) -
Apparently, the NIH and the FDA sponsored a joint study on XMRV in which they found the retrovirus in 80% of the CFS patients tested. So far, so good, right?
At the same time, the CDC conducted a study of XMRV in CFS and failed to find XMRV in ANY of the patients they tested. No big surprise - Reeves was one of the study authors and not finding XMRV supports his longheld belief that CFS is mainly psychological.
So, both studies were scheduled for publication (in different publications) at about the same time. Someone in the government got wind of this and, apparently to avoid embarrassment, they stopped the FDA/NIH study from being published but allowed the CDC one to go forward. This is when an uproar began among the CFS community.
That's where things stand currently, but everyone knows about this other study that found XMRV in CFS patients, so I don't imagine they'll be able to hold back its publication much longer. I heard the main author - a highly respected virologist - is doing some extra testing to verify his results.
If you're interested in the details behind all this, then, as always, Cort Johnson at Phoenix Rising wrote an excellent summary of the whole complicated controversy.
So, now it's time for our UK friends to think, "Wow, they're even more messed up over there than our own government is!" It seems to go back and forth, doesn't it?
As for me, I'm crashed today - sore throat, aches, pounding heart, the works. I managed through the first three days of my period pretty well, so I'm not complaining. I canceled my plans to go to my library book discussion today, but it's the first horizontal day I've had in a long time. Lots of reading today...
Monday, July 12, 2010
Movie Monday 7/12
Oh, I just realized it's Monday...time to resume Movie Mondays! It's hard to remember what day it is during the summer. I handed Jamie a full weekly medicine reminder box at lunchtime today, and he took the Thursday pills!
We got back into our routine of watching DVDs this weekend with a couple of good ones:
Have you seen any good movies lately?
P.S. If you or your kids enjoy reading, you might want to check out my other weekly Monday post on my book blog that lists what all of us have been reading the past week.
We got back into our routine of watching DVDs this weekend with a couple of good ones:
- Friday night, Ken and I watched King of California - thanks for the great recommendation, Toni! Michael Douglas stars in this oddball story of a bipolar man who is released from the mental hospital and becomes obsessed with finding a centuries-old Spanish treasure that he believes is still buried on the site where the local Costco now stands. His 16-year old daughter, who is the responsible adult in this relationship, gets pulled into his quest unwillingly. Michael Douglas does a great job as a crazy guy, and the actress who plays the daughter is also excellent (sorry, I can't remember her name and don't want to get up off the couch!). As Ken said (referring to my tendency to choose oddball films), "Definitely quirky, but this one was good quirky!"
- Craig went to a sleepover Sunday night, so Ken, Jamie, and I watched Sherlock Holmes, the recent release starring Robert Downey Jr. and Jude Law. It was very good, though more physically violent than you'd expect. Jamie says it's pretty true to the stories and books, though; they refer to Holmes as being a very good boxer who sometimes had to use his skills in a case. Jamie's the expert - one summer he read the entire works of Arthur Conan Doyle. He even carried the encyclopedia-sized book through several airports during a trip to Oklahoma! Both actors were excellent in this movie.
Have you seen any good movies lately?
P.S. If you or your kids enjoy reading, you might want to check out my other weekly Monday post on my book blog that lists what all of us have been reading the past week.
Saturday, July 10, 2010
Quote It Saturday 7/10
It's been a very long time since I posted a Quote It Saturday, partly because I've been too busy to blog on the weekends and partly because I've been too busy to write down quotes as I read lately! I actually have tons of things to do today, too, but I wanted to share this with you.
Today's quote isn't from a book; it's something that Jamie's pediatrician said to me on the phone yesterday that really touched me. I called her to fill her in on what's going on with his Lyme and co-infections. I've mentioned many times here how blessed we are to have this wonderful doctor as our boys' pediatrician - she's compassionate, intelligent, and always willing to learn something new (a rare trait in doctors, I've found). She talked with me for about 20 minutes, asking all kinds of questions about what tests the Lyme doctor ran, how the results turned out, and how he plans to approach treatment. When I told her he thought the lines on Jamie's back were definitely from bartonella, she sighed in frustration. "I've seen those same lines on the backs of a half dozen teen boys this summer," she said, "but these are healthy kids with no other symptoms!" She's understandably frustrated by the uncertainties inherent in diagnosing Lyme and co-infections. Finally, at the end of our conversation, she said to me:
Tears came to my eyes. All these years (she's been the boys' doctor since they were born), I wondered if she was just patiently putting up with me but thinking I was a pest, constantly bringing her new information and questioning everything. Her words really touched me deeply and made all the time, effort, and stress of the past few months (years?) seem worth it.
In addition, she asked me to write a very brief summary of why we suspected Lyme and bartonella in Jamie and how the tests turned out so that she can pass that information onto the pediatric doctors who are supposed to be our local Lyme experts. When she talked to each of them about Jamie's case a couple months ago, they'd never heard of the pain in the soles of feet that Jamie was having - but our Lyme doctor says it's a very common Lyme symptom. That's just how she is - constantly trying to improve her own knowledge and that of other doctors.
As for Jamie, he's pretty wiped out today, but I'm not sure it's a reaction to the Lyme medication yet. He and Craig have been running wild all week - sleepovers, swimming, games, and, for the last two nights, flashlight tag until 10 pm!! I love to see them having so much fun and acting like normal kids.
Hope you're all enjoying the weekend!
Today's quote isn't from a book; it's something that Jamie's pediatrician said to me on the phone yesterday that really touched me. I called her to fill her in on what's going on with his Lyme and co-infections. I've mentioned many times here how blessed we are to have this wonderful doctor as our boys' pediatrician - she's compassionate, intelligent, and always willing to learn something new (a rare trait in doctors, I've found). She talked with me for about 20 minutes, asking all kinds of questions about what tests the Lyme doctor ran, how the results turned out, and how he plans to approach treatment. When I told her he thought the lines on Jamie's back were definitely from bartonella, she sighed in frustration. "I've seen those same lines on the backs of a half dozen teen boys this summer," she said, "but these are healthy kids with no other symptoms!" She's understandably frustrated by the uncertainties inherent in diagnosing Lyme and co-infections. Finally, at the end of our conversation, she said to me:
I want you to know that it's because of your intelligence and all your hard work in researching this stuff that you and your family are doing as well as you are with such serious illnesses. You're doing a great job.
Tears came to my eyes. All these years (she's been the boys' doctor since they were born), I wondered if she was just patiently putting up with me but thinking I was a pest, constantly bringing her new information and questioning everything. Her words really touched me deeply and made all the time, effort, and stress of the past few months (years?) seem worth it.
In addition, she asked me to write a very brief summary of why we suspected Lyme and bartonella in Jamie and how the tests turned out so that she can pass that information onto the pediatric doctors who are supposed to be our local Lyme experts. When she talked to each of them about Jamie's case a couple months ago, they'd never heard of the pain in the soles of feet that Jamie was having - but our Lyme doctor says it's a very common Lyme symptom. That's just how she is - constantly trying to improve her own knowledge and that of other doctors.
As for Jamie, he's pretty wiped out today, but I'm not sure it's a reaction to the Lyme medication yet. He and Craig have been running wild all week - sleepovers, swimming, games, and, for the last two nights, flashlight tag until 10 pm!! I love to see them having so much fun and acting like normal kids.
Hope you're all enjoying the weekend!
Thursday, July 08, 2010
A Double Lyme Update
Where to start? I have so much to tell you about our trip to New Jersey today to see the Lyme doctor (Craig wasn't happy he had to come along, but that's life). I'll start with Jamie, my almost-16-year old son.
The doctor reviewed Jamie's test results with us. He tested positive - indicating both old and current infection - for Lyme disease. That wasn't too surprising, since we suspected it. This could be the same Lyme infection that triggered his CFS to start back in 3rd grade or the Lyme infection he was treated for in 7th grade (he never fully regained his stamina after that one) or this could be a newer infection he picked up in the last year or two. No way to tell really. Lyme is transmitted by a tick bite (many people -myself included - can't recall being bitten because the ticks that transmit it are tiny) and is caused by a spirochete (similar to the one that causes syphilis), something closely related to bacteria and treated with antibiotics.
Jamie also tested positive for babesiosis, another common tick-borne infection (often referred to as Lyme co-infections) that often accompanies Lyme. Babesiosis is caused by a parasite, a paramecium, if I remember my AP Biology correctly! It's helped by antibiotics but also needs some specialized medications.
You may remember that all this started a few months ago because we noticed several unusual symptoms in Jamie - including lines on his back - that are associated with bartonella, another tick-borne Lyme co-infection. Jamie's bartonella test came back negative, but the test is often inaccurate, so the doctor will treat for that, too, since his symptoms match. Bartonella is caused by a bacteria and treated with antibiotics, though it usually requires some different medications than Lyme.
The doctor's strategy is to begin with a broad-spectrum antibiotic that will work against the Lyme and will also begin to chip away at the other infections. Doxycycline is often the first choice, but it causes extreme sun sensitivity (as I can attest!), so during the summer, he prefers to prescribe Bactrim (I'm allergic to sulfa drugs and can't take it). So, Jamie will start on that tonight, and we go back for a follow-up visit in 4 weeks. He also noted that Jamie shows signs of yeast overgrowth and recommended an herbal product that should greatly improve his GI symptoms.
We are all feeling both excited and a little scared! The doctor did say to expect a fairly severe herx reaction (symptoms get worse before they get better) because he has three infections and has probably had them for a while (we first noticed the bartonella lines a year ago). So, the rest of the summer could be rough for Jamie. On the plus side, the doctor is very optimistic that Jamie will improve with treatment and most likely see an improvement to symptoms he's been living with for years. In fact, the doctor - who is very mild-mannered and understated normally - said he finds Jamie's case very interesting and exciting. Though he's not a CFS expert, he understands that many cases of CFS begin with some sort of triggering infection. We've always known Jamie's began with Lyme in 3rd grade, so he's interested to see how much Jamie will improve with treatment, especially since he was never before tested for any of the co-infections. Jamie is in very good spirits, with the same hopes and optimism as the doctor.
As for me, he wants me to try going off doxycycline! Though it's very hard to differentiate CFS symptoms from Lyme symptoms (as is obvious from Jamie's case), I knew when I got Lyme because of new symptoms - mainly nausea and knee pain - and I haven't had any of those symptoms in months. His general rule of thumb is to treat until the patient has gone 6-8 weeks without symptoms, but my case is special! The CFS has made it harder to get rid of Lyme, and I've tried stopping antibiotics twice before, and each time, my symptoms returned within a week. So, he wanted me to be symptom-free for 2-3 months before stopping.
As much as I can't wait to get off these high-dose antibiotics, I'm scared! The previous two times I tried, I had to go through another 2-month herx reaction each time I restarted. I don't want to go through that again! He told me it's up to me whether I stop today or when I run out of pills in a couple of weeks, so I think I'll wait. I also need to go off my birth control pills (I take 90-day pills) and get my period soon, and that always makes all my symptoms worse, so I think I'll do that next week - I don't want to have multiple changes at once so I can accurately assess the effect of stopping the doxy. I kept asking the doctor about "what if" my symptoms return, and he just smiled and said, "You'd go back on the doxycycline, but I'm optimistic." I like that about him.
So, lots of news in our family today and lots of mixed emotions. Nothing to do now but wait and see - for both of us.
P.S. Renee - The doctor recommended the very same supplements you did to counter the effects of the herx! Thanks for the great advice - I'll order them tonight!
The doctor reviewed Jamie's test results with us. He tested positive - indicating both old and current infection - for Lyme disease. That wasn't too surprising, since we suspected it. This could be the same Lyme infection that triggered his CFS to start back in 3rd grade or the Lyme infection he was treated for in 7th grade (he never fully regained his stamina after that one) or this could be a newer infection he picked up in the last year or two. No way to tell really. Lyme is transmitted by a tick bite (many people -myself included - can't recall being bitten because the ticks that transmit it are tiny) and is caused by a spirochete (similar to the one that causes syphilis), something closely related to bacteria and treated with antibiotics.
Jamie also tested positive for babesiosis, another common tick-borne infection (often referred to as Lyme co-infections) that often accompanies Lyme. Babesiosis is caused by a parasite, a paramecium, if I remember my AP Biology correctly! It's helped by antibiotics but also needs some specialized medications.
You may remember that all this started a few months ago because we noticed several unusual symptoms in Jamie - including lines on his back - that are associated with bartonella, another tick-borne Lyme co-infection. Jamie's bartonella test came back negative, but the test is often inaccurate, so the doctor will treat for that, too, since his symptoms match. Bartonella is caused by a bacteria and treated with antibiotics, though it usually requires some different medications than Lyme.
The doctor's strategy is to begin with a broad-spectrum antibiotic that will work against the Lyme and will also begin to chip away at the other infections. Doxycycline is often the first choice, but it causes extreme sun sensitivity (as I can attest!), so during the summer, he prefers to prescribe Bactrim (I'm allergic to sulfa drugs and can't take it). So, Jamie will start on that tonight, and we go back for a follow-up visit in 4 weeks. He also noted that Jamie shows signs of yeast overgrowth and recommended an herbal product that should greatly improve his GI symptoms.
We are all feeling both excited and a little scared! The doctor did say to expect a fairly severe herx reaction (symptoms get worse before they get better) because he has three infections and has probably had them for a while (we first noticed the bartonella lines a year ago). So, the rest of the summer could be rough for Jamie. On the plus side, the doctor is very optimistic that Jamie will improve with treatment and most likely see an improvement to symptoms he's been living with for years. In fact, the doctor - who is very mild-mannered and understated normally - said he finds Jamie's case very interesting and exciting. Though he's not a CFS expert, he understands that many cases of CFS begin with some sort of triggering infection. We've always known Jamie's began with Lyme in 3rd grade, so he's interested to see how much Jamie will improve with treatment, especially since he was never before tested for any of the co-infections. Jamie is in very good spirits, with the same hopes and optimism as the doctor.
As for me, he wants me to try going off doxycycline! Though it's very hard to differentiate CFS symptoms from Lyme symptoms (as is obvious from Jamie's case), I knew when I got Lyme because of new symptoms - mainly nausea and knee pain - and I haven't had any of those symptoms in months. His general rule of thumb is to treat until the patient has gone 6-8 weeks without symptoms, but my case is special! The CFS has made it harder to get rid of Lyme, and I've tried stopping antibiotics twice before, and each time, my symptoms returned within a week. So, he wanted me to be symptom-free for 2-3 months before stopping.
As much as I can't wait to get off these high-dose antibiotics, I'm scared! The previous two times I tried, I had to go through another 2-month herx reaction each time I restarted. I don't want to go through that again! He told me it's up to me whether I stop today or when I run out of pills in a couple of weeks, so I think I'll wait. I also need to go off my birth control pills (I take 90-day pills) and get my period soon, and that always makes all my symptoms worse, so I think I'll do that next week - I don't want to have multiple changes at once so I can accurately assess the effect of stopping the doxy. I kept asking the doctor about "what if" my symptoms return, and he just smiled and said, "You'd go back on the doxycycline, but I'm optimistic." I like that about him.
So, lots of news in our family today and lots of mixed emotions. Nothing to do now but wait and see - for both of us.
P.S. Renee - The doctor recommended the very same supplements you did to counter the effects of the herx! Thanks for the great advice - I'll order them tonight!
Wednesday, July 07, 2010
Summer Living
Now that we're home from vacation, we're getting into the summer routine (or lack thereof!). I still have 500 unread e-mails (slow progress) and piles of vacation stuff are still stacked around the house, but the laundry is all done, the mail is all sorted, and the to-do list is back in action.
Although I miss the quiet mornings all to myself, it's very nice not having to get up at 7 am and not worrying about school events, soccer, and homework in the evenings. In fact, relaxed evenings are probably my favorite part of summer - no schedule, no stress. I have been staying up too late, though, and am pretty tired today. I can't seem to sleep in very much no matter how late I go to sleep.
The boys are having a blast this week. I've been letting them go a little crazy and do everything they want because tomorrow Jamie and I see the Lyme doctor. Jamie will probably start treatment tomorrow (we'll find out the details at the appointment - all we know for sure right now is that he tested positive for multiple tick-borne infections), and there's a good chance he'll go through a period of feeling much worse (herx reaction) before he gets better. Since that makes the rest of the summer kind of an unknown, I've been letting the boys pack in a lot of fun this week - they've had two sleep-overs, gone swimming, golfing, and been with friends pretty much all the time! It's a little harder on me (banana-chocolate chip pancakes for 4 boys this morning!), but I'm worried about what's in store for Jamie. Hopefully, he won't react too badly. I'll let you know what we find out tomorrow.
Hope you're enjoying summer so far!
Although I miss the quiet mornings all to myself, it's very nice not having to get up at 7 am and not worrying about school events, soccer, and homework in the evenings. In fact, relaxed evenings are probably my favorite part of summer - no schedule, no stress. I have been staying up too late, though, and am pretty tired today. I can't seem to sleep in very much no matter how late I go to sleep.
The boys are having a blast this week. I've been letting them go a little crazy and do everything they want because tomorrow Jamie and I see the Lyme doctor. Jamie will probably start treatment tomorrow (we'll find out the details at the appointment - all we know for sure right now is that he tested positive for multiple tick-borne infections), and there's a good chance he'll go through a period of feeling much worse (herx reaction) before he gets better. Since that makes the rest of the summer kind of an unknown, I've been letting the boys pack in a lot of fun this week - they've had two sleep-overs, gone swimming, golfing, and been with friends pretty much all the time! It's a little harder on me (banana-chocolate chip pancakes for 4 boys this morning!), but I'm worried about what's in store for Jamie. Hopefully, he won't react too badly. I'll let you know what we find out tomorrow.
Hope you're enjoying summer so far!
Sunday, July 04, 2010
Home Again, Home Again, Jiggety Jog
We arrived back home from our 3-week road trip last night, in time to have a late dinner (we were all sick of eating out after our last three days on the road). We drove to Oklahoma to see Ken's dad with our camper, making lots of stops along the way, then spent a week in New Mexico, which we all loved! We especially enjoyed our time in the Santa Fe National Forest, northwest of Santa Fe - the mountains were wonderful! If you'd like to see pictures of our trip, just visit our road trip blog. Scroll down to June 13, 2010 to read the entries in order.
As usual, I felt pretty good for most of the time while we were on vacation. I had a few days where I felt really tired, but I managed an amazing amount of exercise and exertion! In New Mexico, I did a 2.1-mile hike in the hot desert heat at Bandelier National Monument, including climbing up lots of steps and ladders to climb into the cave dwellings (you can see pictures on the trip blog). It was really cool, but I was soooo tired afterward! I had planned initially to just go on the 1-mile loop hike and wait on a shady bench while Ken and the boys did the extra 1-mile to the highest cave dwelling, but then I talked myself into doing it all. I was wiped out the next day, but I'm glad I did it. And I knew better than to even contemplate the next day's hike - Ken and the boys hiked 2 miles from our campground to a series of warm springs out in the backcountry (and back another 2 miles!). They loved the hike and the soak, but I was happy to stay in the camper and take a nap!
On our way back through Oklahoma last week, we stopped by to meet fellow CFS blogger Dominique (of 4 Walls and a View) for lunch at P.F. Chang's. We had a wonderful time together. Dominique is just the same in person as you'd imagine from reading her blog - warm, vibrant, and intelligent with a great sense of humor. It was fun to meet her in person after getting to know each other online.
Now, we're faced with LOTS of laundry, a big pile of mail, and that ever-lasting to-do list that I left behind 3 weeks ago. On the other hand, it was very nice to sleep in my own bed last night, and we're enjoying all the wonderful fresh produce we bought at an Amish farmstand on the way home (we live close to Lancaster, PA). Now I need to try to maintain my stress-free vacation mindset...
Happy 4th of July!!
As usual, I felt pretty good for most of the time while we were on vacation. I had a few days where I felt really tired, but I managed an amazing amount of exercise and exertion! In New Mexico, I did a 2.1-mile hike in the hot desert heat at Bandelier National Monument, including climbing up lots of steps and ladders to climb into the cave dwellings (you can see pictures on the trip blog). It was really cool, but I was soooo tired afterward! I had planned initially to just go on the 1-mile loop hike and wait on a shady bench while Ken and the boys did the extra 1-mile to the highest cave dwelling, but then I talked myself into doing it all. I was wiped out the next day, but I'm glad I did it. And I knew better than to even contemplate the next day's hike - Ken and the boys hiked 2 miles from our campground to a series of warm springs out in the backcountry (and back another 2 miles!). They loved the hike and the soak, but I was happy to stay in the camper and take a nap!
On our way back through Oklahoma last week, we stopped by to meet fellow CFS blogger Dominique (of 4 Walls and a View) for lunch at P.F. Chang's. We had a wonderful time together. Dominique is just the same in person as you'd imagine from reading her blog - warm, vibrant, and intelligent with a great sense of humor. It was fun to meet her in person after getting to know each other online.
Now, we're faced with LOTS of laundry, a big pile of mail, and that ever-lasting to-do list that I left behind 3 weeks ago. On the other hand, it was very nice to sleep in my own bed last night, and we're enjoying all the wonderful fresh produce we bought at an Amish farmstand on the way home (we live close to Lancaster, PA). Now I need to try to maintain my stress-free vacation mindset...
Happy 4th of July!!
Thursday, June 24, 2010
A Full Day
Whew! What a day we had yesterday! We're camping just outside Albuquerque, New Mexico. The nights are nice and cool here in the mountains where the campground is (and they have WiFi!), but it's been in the 90's during the day and especially hot in the valley - Albuquerque is like a bowl, surrounded by mountains.
We started the day with a trip to Petroglyph National Monument, where we took two short (but HOT and uphill) hikes to see the writing on the walls (ha ha) - it's actually writing on rocks. Very cool - there were hundreds of petroglyphs of all sorts of mysterious pictures and symbols, some dating back thousands of years.
We had an amazing lunch at Sophia's Place, a little cafe we found through one of our favorite TV shows, Diners, Drive-Ins, and Dives. The food was incredible - super fresh and everything homemade! I had fish tacos - mmmm!
After lunch, Ken just drove aimlessly around the city, in a futile attempt to allow me to nap in the air conditioning. We figured it would be too hot back at our camper, but it was pretty hard to nap in stop-and-go city traffic.
Eventually, I gave up, and we spent some time wandering around Old Town in Albuquerque, a historic area of pretty gardens and squares, and lots of little shops. By 3:30, I was really pooped out, but it still seemed too hot to come back to the camper, so we went to the planetarium in the local Natural History Museum. Our boys had never been to a planetarium before, so that was fun - plus it was cool, and I could sit back in a comfy seat with my feet up!
We finally came back to the camper for a light dinner, and I tried another nap - better but still too short. In the evening, we took the world's longest aerial tram up the side of Sandia Mountains - up to 10,300 ft! It was freezing up there! We took a short hike along the edge of the mountain and were treated to incredible sunset views of the mountains and the city below.
As you can imagine, I'm pretty wiped out today - sore throat and very tired. Plus, my allergies are kicked up by something here. Today will be a quieter day - we're moving into the mountains north of Albuquerque for a few days.
If you'd like to see pictures of our trip so far or follow along with the rest of it, you can check out our trip blog. I wasn't going to mention it until we got home, but we have lots of people watching our house while we're away. Besides, if anyone tried to rob us, they'd be sorely disappointed! We do have a big house in a nice neighborhood, but all our money goes to medical expenses, and whatever is left is used for travel. We have 30-year old furniture and ancient electronics. We still tape TV shows on a VCR! Anyway, check out the blog. Time to pack up.
We started the day with a trip to Petroglyph National Monument, where we took two short (but HOT and uphill) hikes to see the writing on the walls (ha ha) - it's actually writing on rocks. Very cool - there were hundreds of petroglyphs of all sorts of mysterious pictures and symbols, some dating back thousands of years.
We had an amazing lunch at Sophia's Place, a little cafe we found through one of our favorite TV shows, Diners, Drive-Ins, and Dives. The food was incredible - super fresh and everything homemade! I had fish tacos - mmmm!
After lunch, Ken just drove aimlessly around the city, in a futile attempt to allow me to nap in the air conditioning. We figured it would be too hot back at our camper, but it was pretty hard to nap in stop-and-go city traffic.
Eventually, I gave up, and we spent some time wandering around Old Town in Albuquerque, a historic area of pretty gardens and squares, and lots of little shops. By 3:30, I was really pooped out, but it still seemed too hot to come back to the camper, so we went to the planetarium in the local Natural History Museum. Our boys had never been to a planetarium before, so that was fun - plus it was cool, and I could sit back in a comfy seat with my feet up!
We finally came back to the camper for a light dinner, and I tried another nap - better but still too short. In the evening, we took the world's longest aerial tram up the side of Sandia Mountains - up to 10,300 ft! It was freezing up there! We took a short hike along the edge of the mountain and were treated to incredible sunset views of the mountains and the city below.
As you can imagine, I'm pretty wiped out today - sore throat and very tired. Plus, my allergies are kicked up by something here. Today will be a quieter day - we're moving into the mountains north of Albuquerque for a few days.
If you'd like to see pictures of our trip so far or follow along with the rest of it, you can check out our trip blog. I wasn't going to mention it until we got home, but we have lots of people watching our house while we're away. Besides, if anyone tried to rob us, they'd be sorely disappointed! We do have a big house in a nice neighborhood, but all our money goes to medical expenses, and whatever is left is used for travel. We have 30-year old furniture and ancient electronics. We still tape TV shows on a VCR! Anyway, check out the blog. Time to pack up.
Saturday, June 19, 2010
Ooooklahoma!
Hi ya'll...I have to adjust my east coast speech patterns while we're out here in Oklahoma, visiting Ken's dad.
It's been a good trip so far, with lots of fun stops on the way here. We did suffer one minor setback - our first night camping in Tennessee, Jamie woke up with a nasty stomach virus. Poor kid - not a fun way to travel! We tried to hang out at the campground for a while so he could rest, but a huge line of thunderstorms headed our way, so we had to pack up the camper fast and head out. We set Jamie up lying in the back seat, while Craig had to squeeze into a tiny spot in the third row, surrounding by our luggage! Fortunately, it only lasted a day, and he's doing fine now.
I've been managing pretty well. I felt good most days on the way out here and have been managing some hikes. We took two hikes in Arkansas, where it was REALLY hot, and I felt a bit tired for a couple of days after that, but otherwise, I've been doing well. Nothing like that stress-free vacation frame of mind...
It's been a good trip so far, with lots of fun stops on the way here. We did suffer one minor setback - our first night camping in Tennessee, Jamie woke up with a nasty stomach virus. Poor kid - not a fun way to travel! We tried to hang out at the campground for a while so he could rest, but a huge line of thunderstorms headed our way, so we had to pack up the camper fast and head out. We set Jamie up lying in the back seat, while Craig had to squeeze into a tiny spot in the third row, surrounding by our luggage! Fortunately, it only lasted a day, and he's doing fine now.
I've been managing pretty well. I felt good most days on the way out here and have been managing some hikes. We took two hikes in Arkansas, where it was REALLY hot, and I felt a bit tired for a couple of days after that, but otherwise, I've been doing well. Nothing like that stress-free vacation frame of mind...
Friday, June 11, 2010
Jamie's Lyme News
Oops, I forgot to tell you....we got some news (well, sort of) about Jamie's Lyme tests this week. I was supposed to drive him to NJ today to see the Lyme doctor and review the results of his Igenex tests, but with all that went on this week, I just couldn't spare a full day for the trip. I figured even if he tested positive, I wouldn't start him on treatment right before vacation anyway, in case he has a bad herx reaction.
So, when I called to postpone his appointment, I asked them if they could check his test results. She didn't want to give me details over the phone, but she said he did have more than one positive test - I'm guessing Lyme and bartonella since that's what we suspected.
So, he and I have appointments the week we get back, and we'll see what's ahead for him. Since we suspect he's had the bartonella for almost a year now, and the Lyme could even be left over from when he had it in 7th grade (3 years ago), he could be in for a severe herx reaction (the initial worsening of symptoms when treatment starts). But there's no school for almost 3 months, and hopefully, he will eventually improve with treatment. We've been worried because his condition has sort of plateaued over the past few years - maybe this is why. We're very hopeful for his future.
So, when I called to postpone his appointment, I asked them if they could check his test results. She didn't want to give me details over the phone, but she said he did have more than one positive test - I'm guessing Lyme and bartonella since that's what we suspected.
So, he and I have appointments the week we get back, and we'll see what's ahead for him. Since we suspect he's had the bartonella for almost a year now, and the Lyme could even be left over from when he had it in 7th grade (3 years ago), he could be in for a severe herx reaction (the initial worsening of symptoms when treatment starts). But there's no school for almost 3 months, and hopefully, he will eventually improve with treatment. We've been worried because his condition has sort of plateaued over the past few years - maybe this is why. We're very hopeful for his future.
Still Hanging In There...
I still have a long list of things to get done before we leave on vacation, but I just had to take a few minutes out to touch base with all my online buddies - I've missed the blogging world this week!
I've been running my butt off all week long (so has Ken). My friend's been trying to catch me on the phone and was laughing that every time she calls, Jamie says I'm at the store! Believe it or not (I hardly can myself), I am still managing OK. I wish I knew what the secret was - why I was so totally incapacitated for 8 months this winter and why I'm suddenly doing well again. Not that I'm complaining, but it would be nice if I had some control over it. I usually do well in the summer (except for two years ago when I got Lyme).
As of five minutes ago, I finally finished planning our trip and making reservations! Just in time. We're heading back to Oklahoma with our camper to see Ken's Dad, then to New Mexico. We've made the trip to Oklahoma many, many times and have our favorite stops - including Shenandoah National Park and Petit Jean State Park in Arkansas - but we're looking forward to exploring new areas in New Mexico.
OK, back to the list. Hope everyone is enjoying the beginning of summer!
I've been running my butt off all week long (so has Ken). My friend's been trying to catch me on the phone and was laughing that every time she calls, Jamie says I'm at the store! Believe it or not (I hardly can myself), I am still managing OK. I wish I knew what the secret was - why I was so totally incapacitated for 8 months this winter and why I'm suddenly doing well again. Not that I'm complaining, but it would be nice if I had some control over it. I usually do well in the summer (except for two years ago when I got Lyme).
As of five minutes ago, I finally finished planning our trip and making reservations! Just in time. We're heading back to Oklahoma with our camper to see Ken's Dad, then to New Mexico. We've made the trip to Oklahoma many, many times and have our favorite stops - including Shenandoah National Park and Petit Jean State Park in Arkansas - but we're looking forward to exploring new areas in New Mexico.
OK, back to the list. Hope everyone is enjoying the beginning of summer!
Tuesday, June 08, 2010
Planes, Trains, and Automobiles
Since I missed Movie Monday, I thought I'd pay homage to one of the funniest movies of all time, Planes, Trains, and Automobiles starring John Candy and Steve Martin. In the early, dark days of my illness, I popped this tape in whenever I needed some good belly laughs! The scene in the burned-out car, when the police officer stops him for speeding, is priceless!
Alas, those kinds of travel troubles are much funnier on the screen than they are in real life. In fact, it's not at all funny in real life. But I think I need to rename our adventures of the last few days "Planes, Planes, Planes, and Planes."
Ken and Jamie got off OK Friday morning. They left our house at 4 am and arrived in Oklahoma City just an hour late in the afternoon (there are no direct flights from Philly or Baltimore to OKC). They had just enough time to rent a car, grab lunch, change clothes, and get to the funeral home in time for the visiting hours.
Back in Delaware, Craig won almost every contest in his class' Greek-style Olympics, then wowed the audience with his performance (with a friend) of a Justin Bieber song in the 6th grade talent show. As soon as he came off stage, Craig and I ran out the door, and a friend drove us to the airport. Everything seemed to be going smoothly...until we boarded the plane. We waited on board - at the gate - for four hours - while they tried to fix a mechanical problem. We could have left, but they kept saying we'd be on our way "in 15 minutes." Four hours later, they canceled the flight. By then, it was too late to get another one. They put Craig and I up overnight in a nearby hotel, then we got up at 4 am the next morning to catch the first flight out.
Despite all our efforts, we missed the funeral. We arrived in time for the church lunch afterward. At least we got to see our Texas relatives before they headed back home. And all four of us stayed with my father-in-law for several days and spent time with our nephew and his family.
More travel problems on the way home. We finally got in at 2:30 am today. After sleeping late and lots of naps today, we're all doing OK, but now we have just a few days to get ready to leave on vacation!! No idea how we'll manage that feat.
So, it was an exhausting week - emotionally and physically. I was pretty wiped out for a day or so in Oklahoma, but we had a few quiet days. Despite the quick turn-around, we're glad we're heading back to Oklahoma next week. My father-in-law is pretty lost and will certainly be lonely now that everyone has left. So, things will be pretty crazy here this week - I probably won't have much blogging time until after we get back from vacation. Thank goodness we're driving and not flying!!
Alas, those kinds of travel troubles are much funnier on the screen than they are in real life. In fact, it's not at all funny in real life. But I think I need to rename our adventures of the last few days "Planes, Planes, Planes, and Planes."
Ken and Jamie got off OK Friday morning. They left our house at 4 am and arrived in Oklahoma City just an hour late in the afternoon (there are no direct flights from Philly or Baltimore to OKC). They had just enough time to rent a car, grab lunch, change clothes, and get to the funeral home in time for the visiting hours.
Back in Delaware, Craig won almost every contest in his class' Greek-style Olympics, then wowed the audience with his performance (with a friend) of a Justin Bieber song in the 6th grade talent show. As soon as he came off stage, Craig and I ran out the door, and a friend drove us to the airport. Everything seemed to be going smoothly...until we boarded the plane. We waited on board - at the gate - for four hours - while they tried to fix a mechanical problem. We could have left, but they kept saying we'd be on our way "in 15 minutes." Four hours later, they canceled the flight. By then, it was too late to get another one. They put Craig and I up overnight in a nearby hotel, then we got up at 4 am the next morning to catch the first flight out.
Despite all our efforts, we missed the funeral. We arrived in time for the church lunch afterward. At least we got to see our Texas relatives before they headed back home. And all four of us stayed with my father-in-law for several days and spent time with our nephew and his family.
More travel problems on the way home. We finally got in at 2:30 am today. After sleeping late and lots of naps today, we're all doing OK, but now we have just a few days to get ready to leave on vacation!! No idea how we'll manage that feat.
So, it was an exhausting week - emotionally and physically. I was pretty wiped out for a day or so in Oklahoma, but we had a few quiet days. Despite the quick turn-around, we're glad we're heading back to Oklahoma next week. My father-in-law is pretty lost and will certainly be lonely now that everyone has left. So, things will be pretty crazy here this week - I probably won't have much blogging time until after we get back from vacation. Thank goodness we're driving and not flying!!
Thursday, June 03, 2010
In Loving Memory of Grandma
Ken's mom passed away this morning, after a brave, 30-year battle with Parkinson's disease. She was a wonderful, loving woman who welcomed me into the family and always treated me like her own daughter (who she lost at age 36). She was also a fun-loving and caring Grandma, much loved by all of her grandkids.
We have wonderful memories of playing games with her around the kitchen table, celebrating New Year's Eve with her and Granddad every year, and looking forward to all the goodies she had waiting for the kids when we visited. Earlier, before Parkinson's took away her mobility, she and Ken's dad loved to travel and camp, taking Ken and his sister on trips all over the U.S. western states. Here's a picture of Grandma and Granddad with Jamie and Craig in 2006, happier times, when she was still able to get around.
She's been in a nursing home for the past two years and has steadily declined recently. Although we are all upset and will miss her terribly, her passing is a blessing as she's had no quality of life these past few months. She is free now and no longer suffering.
Ken and I spent today on the phone and making travel arrangements for Oklahoma. It was tough to find available seats on flights. He and Jamie will leave at 6 am tomorrow (!). Craig and I will follow tomorrow afternoon, after Craig appears in his 6th grade talent show. We don't arrive until midnight, so it will be a long day for all of us. Thank goodness I've been feeling better lately and have better stamina. I will certainly need it this weekend. We're doing OK, but it will be a difficult few days ahead.
She's been in a nursing home for the past two years and has steadily declined recently. Although we are all upset and will miss her terribly, her passing is a blessing as she's had no quality of life these past few months. She is free now and no longer suffering.
Ken and I spent today on the phone and making travel arrangements for Oklahoma. It was tough to find available seats on flights. He and Jamie will leave at 6 am tomorrow (!). Craig and I will follow tomorrow afternoon, after Craig appears in his 6th grade talent show. We don't arrive until midnight, so it will be a long day for all of us. Thank goodness I've been feeling better lately and have better stamina. I will certainly need it this weekend. We're doing OK, but it will be a difficult few days ahead.
Wednesday, June 02, 2010
50 Things I Accomplished
I saw this list over at Dominique's blog and just loved it! After my downer post last week on Goals, Productivity, and Other BS, I thought this would be a nice counter - to acknowledge everything I HAVE accomplished in my life! This is a great list and has helped to remind me that I have lived - and am living - a very full life. Also, there are things on this list I can still do. So, here are the 50 things I've accomplished (comments in parantheses are my own additions!). How about you?
1. Started your own blog
1. Started your own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity
7. Been to Disneyland (well, Disney World, but that counts, right?)
8. Climbed a mountain
9. Held a praying mantis
10. Sang a solo (Dorothy in the Wizard of Oz in 8th grade - be thankful you missed it!)
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitch hiked
23. Taken a sick day when you’re not ill
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone Rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had your portrait painted
48. Gone deep-sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone Whale Watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check (is this really an important life experience??)
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been a passenger on a motorcycle
79. Seen the Grand Canyon in person
80. Publish a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper (just last week - I've been meaning to tell you about that!)
85. Kissed a stranger at midnight on NYE
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury (almost, but the defendant didn't show up!)
91. Met someone famous
92. Joined a book club
93. Gotten a tatoo
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee
Tuesday, June 01, 2010
Movie Tuesday 6/1
Sorry I missed Movie Monday yesterday! We had a very busy weekend, and it certainly didn't feel like a Monday. In fact, I did attempt my usual Monday morning What Are You Reading? post for Great Books for Kids and Teens, and it took me three times as long as usual, with various members of my family constantly interrupting! I gave up on blogs at that point and decided to save the movie summary for today when the house would be quiet again.
We had a very productive weekend and fit in a little fun, too. We finally tackled some of our jungle-like yard (parts of it look remarkably like the set of Lost). Believe it or not, I managed quite a bit of weeding both Sunday and Monday...and was still OK today! This is a huge improvement. And Ken put down some mulch over the weeded areas, so hopefully, it won't get so jungle-looking quite so soon this time.
The boys had two friends sleep over Friday night (long weekend means more recovery time), then another friend joined them on Saturday morning, and they all stayed until about 4 pm. Jamie said it was the best time he's ever had (he's known for these kinds of superlatives!). Craig rebounded well. Jamie was wiped out on Sunday, but OK by Monday. Ken and I actually went out to dinner ALONE on Saturday night! It's kind of rare that we have the time and energy for a date, so that was very nice. And we ended the weekend with a cook-out with some close friends. All in all, a very good weekend with very little payback. I am truly amazed at how good I'm feeling and how much I'm able to do now, but this winter's 8-month long relapse took all the cockiness out of me - one day at a time.
And, we did have time for some good movies this weekend:
And today during lunch, I watched the season finale online of Parenthood. I laughed through half of the episode and sobbed through the rest! It's such a great show - a true depiction of the joys and heartbreaks of being a parent and being a part of an extended family. Another good one to watch online during the summer (nbc.com will have the full first season online until September).
Have you seen any good movies lately?
We had a very productive weekend and fit in a little fun, too. We finally tackled some of our jungle-like yard (parts of it look remarkably like the set of Lost). Believe it or not, I managed quite a bit of weeding both Sunday and Monday...and was still OK today! This is a huge improvement. And Ken put down some mulch over the weeded areas, so hopefully, it won't get so jungle-looking quite so soon this time.
The boys had two friends sleep over Friday night (long weekend means more recovery time), then another friend joined them on Saturday morning, and they all stayed until about 4 pm. Jamie said it was the best time he's ever had (he's known for these kinds of superlatives!). Craig rebounded well. Jamie was wiped out on Sunday, but OK by Monday. Ken and I actually went out to dinner ALONE on Saturday night! It's kind of rare that we have the time and energy for a date, so that was very nice. And we ended the weekend with a cook-out with some close friends. All in all, a very good weekend with very little payback. I am truly amazed at how good I'm feeling and how much I'm able to do now, but this winter's 8-month long relapse took all the cockiness out of me - one day at a time.
And, we did have time for some good movies this weekend:
- We started watching Catch me If You Can with the boys this weekend (we haven't finished it yet). Ken and I saw this great Steven Spielberg movie based on a true story in the theater when it first came out. Leonardo DiCaprio stars as a young man who passes himself off as an airline pilot, a doctor, and a lawyer (he's not yet twenty during this time!), and Tom Hanks stars as the FBI agent tracking him down for his forgeries and frauds. It's clever, funny, and well-acted, and the kids are enjoying it so far.
- Ken and I watched Perfect Stranger, a psychological thriller starring Halle Berry and Bruce Willis. Halle Berry plays a reporter who suspects a high-powered ad executive (Willis) of murdering her childhood friend after they had an affair. The movie didn't get great reviews, and I sort of agreed that it was just so-so...until it totally surprised both Ken and I with some twists and turns. Our opinions both rose after that! You have to understand that Ken usually predicts even the most unexpected plot twists in movies about half-way through - he's kind of a bummer to watch suspense movies with! - and he never saw these twists coming either. So if you like suspense and thrillers, you'll probably enjoy this one.
- We also watched Tumbleweeds, thanks to a recommendation from one of my readers here (thanks, Toni!). We both enjoyed this movie about a mother with a history of choosing inappropriate men, then taking off when things turn sour. The movie opens with she and her daughter fleeing husband #4 and driving to California (our only problem with the whole movie was the desert scenes as they drove from WV to Missouri - huh?). They have a great relationship together, and the mom really loves her daughter, but the daughter is sick of always moving and of the parade of men through their lives. It's a great movie - heartwarming and humorous - that's all about life and love and learning how to stand on your own two feet. Great recommendation!
And today during lunch, I watched the season finale online of Parenthood. I laughed through half of the episode and sobbed through the rest! It's such a great show - a true depiction of the joys and heartbreaks of being a parent and being a part of an extended family. Another good one to watch online during the summer (nbc.com will have the full first season online until September).
Have you seen any good movies lately?
Friday, May 28, 2010
Birds of a Feather
I had the most remarkable lunch today. Well, the salmon sandwich was excellent, but I'm actually referring to the company. I coordinated a lunch with a bunch of moms in our local area who have kids with CFS, and it was so wonderful to get together with them all!
There were five of us today (I know of another three locally that I'll try to include next time). All of us live within an hour of here, and all of us have at least one teen with CFS and OI (and other assorted ailments like Lyme). Two of us have two kids with CFS. I had met the two moms who live closest to me before and knew the others from online, but none of them had ever met before.
It was so much fun! If it weren't for my nap, I think we could have talked all day long and never run out of things to say. It's such an amazing experience to be able to talk about what we're going through and have everyone present totally get it. We talked about doctors, treatments, school, family, and more. They are all strong, intelligent, caring, remarkable women. I feel blessed to have been able to meet them all, and we agreed we'll have to get together again soon.
I left there just feeling on top of the world. What a powerful feeling to connect with other people living with the exact same challenges as us. I can't wait for our next gathering!
P.S. I feel the same way about all the people I've met through blogging. Wouldn't it be amazing if we could all get together and have a little CFS bloggers convention (with cots set up all over the room and afternoon nap time, of course)?
There were five of us today (I know of another three locally that I'll try to include next time). All of us live within an hour of here, and all of us have at least one teen with CFS and OI (and other assorted ailments like Lyme). Two of us have two kids with CFS. I had met the two moms who live closest to me before and knew the others from online, but none of them had ever met before.
It was so much fun! If it weren't for my nap, I think we could have talked all day long and never run out of things to say. It's such an amazing experience to be able to talk about what we're going through and have everyone present totally get it. We talked about doctors, treatments, school, family, and more. They are all strong, intelligent, caring, remarkable women. I feel blessed to have been able to meet them all, and we agreed we'll have to get together again soon.
I left there just feeling on top of the world. What a powerful feeling to connect with other people living with the exact same challenges as us. I can't wait for our next gathering!
P.S. I feel the same way about all the people I've met through blogging. Wouldn't it be amazing if we could all get together and have a little CFS bloggers convention (with cots set up all over the room and afternoon nap time, of course)?
Thursday, May 27, 2010
Goals, Productivity, and Other BS
I'm so far behind with everything related to blogging! I know there are various posts I've promised over the past few weeks (like the one on Lyme co-infections) and others I keep meaning to post, but I just haven't had time. Same with visiting blogs.
The good news is that I'm experiencing an amazing run of good health - 4 really good days in a row. It's the best I've felt since...almost a year ago. I'm thrilled of course but also wondering whether I'll go through such a terrible relapse every winter. I hope this one was unusual.
So this week, I haven't had much blogging time because I've spent almost no time lying on the couch! I've been running errands, making long overdue phone calls, and even made trips to both Trader Joe's and the regular grocery store! Yesterday, for the first time since September, I accompanied my two friends on what used to be a weekly hike at the local nature center. We were out there for an hour! My wonderful friends kept an eye on me and made sure we stayed on flat trails, reminded me to take breaks, and went at my slow pace. Last night, the three of us went out to dinner then to our book group...and after all that yesterday, I still felt good today!
This breakthrough came just in time - I was feeling completely overwhelmed. By last Friday, both Ken and I felt like we were at the breaking point - totally exhausted, drowning in to-dos, and making no progress. Eight months of being badly crashed most of the time really took their toll. I set goals at the start of the year, like I do every year, but felt like I had done nothing at all. My to-do list has overflowed onto a second pad of paper, and more things get added faster than I cross things off. I spend all my time on necessary "maintenance" stuff - laundry, meals, school & soccer, managing health insurance (a full-time job on its own), paying bills, etc. - and never get to my actual goals.
I was actually feeling this way back in January and felt like something had to change. I made a very tough decision to take a leave of absence from my beloved book blog, Book By Book. I love books and enjoy writing reviews, but with severely limited energy, that was unpaid writing that was taking up precious time (I decided to keep up the kids' book blog, since it relates directly to paid writing work I do). It was a hard thing for me to give up, but it ended up not making much difference. I was still drowning and unable to catch up. It took me over a month to get through the 200 e-mails that arrived while I was on spring break - I just accomplished that last Friday!
So, while I'm thrilled to be feeling better and making some small headway, Ken and I are both still feeling pretty overwhelmed. And now it's almost time to leave on another trip (when school gets out, we head to Oklahoma to visit Ken's parents and enjoy our annual summer road trip)....if I can find time to plan the trip!
I just hate this feeling of always being behind and never catching up. The truth is that I felt somewhat this way even before I got sick - I've always been prone to overcommitting to more than I can actually accomplish - but the limitations of CFS make it so much worse.
How do others handle this? I feel like I've already given up so much. I've tried hard to lower my expectations for myself, but I obviously still have so far to go. For now, I'll just keep plugging away and be grateful for this brief run of good health.
The good news is that I'm experiencing an amazing run of good health - 4 really good days in a row. It's the best I've felt since...almost a year ago. I'm thrilled of course but also wondering whether I'll go through such a terrible relapse every winter. I hope this one was unusual.
So this week, I haven't had much blogging time because I've spent almost no time lying on the couch! I've been running errands, making long overdue phone calls, and even made trips to both Trader Joe's and the regular grocery store! Yesterday, for the first time since September, I accompanied my two friends on what used to be a weekly hike at the local nature center. We were out there for an hour! My wonderful friends kept an eye on me and made sure we stayed on flat trails, reminded me to take breaks, and went at my slow pace. Last night, the three of us went out to dinner then to our book group...and after all that yesterday, I still felt good today!
This breakthrough came just in time - I was feeling completely overwhelmed. By last Friday, both Ken and I felt like we were at the breaking point - totally exhausted, drowning in to-dos, and making no progress. Eight months of being badly crashed most of the time really took their toll. I set goals at the start of the year, like I do every year, but felt like I had done nothing at all. My to-do list has overflowed onto a second pad of paper, and more things get added faster than I cross things off. I spend all my time on necessary "maintenance" stuff - laundry, meals, school & soccer, managing health insurance (a full-time job on its own), paying bills, etc. - and never get to my actual goals.
I was actually feeling this way back in January and felt like something had to change. I made a very tough decision to take a leave of absence from my beloved book blog, Book By Book. I love books and enjoy writing reviews, but with severely limited energy, that was unpaid writing that was taking up precious time (I decided to keep up the kids' book blog, since it relates directly to paid writing work I do). It was a hard thing for me to give up, but it ended up not making much difference. I was still drowning and unable to catch up. It took me over a month to get through the 200 e-mails that arrived while I was on spring break - I just accomplished that last Friday!
So, while I'm thrilled to be feeling better and making some small headway, Ken and I are both still feeling pretty overwhelmed. And now it's almost time to leave on another trip (when school gets out, we head to Oklahoma to visit Ken's parents and enjoy our annual summer road trip)....if I can find time to plan the trip!
I just hate this feeling of always being behind and never catching up. The truth is that I felt somewhat this way even before I got sick - I've always been prone to overcommitting to more than I can actually accomplish - but the limitations of CFS make it so much worse.
How do others handle this? I feel like I've already given up so much. I've tried hard to lower my expectations for myself, but I obviously still have so far to go. For now, I'll just keep plugging away and be grateful for this brief run of good health.
Tuesday, May 25, 2010
A Book By One of Our Own!
Our very own Pris Campbell, a CFS sufferer and frequent visitor here and to many other CFS blogs, has published a wonderful book of poetry and prose called Sea Trails: Poems and 1977 Passage Notes. It's the story of her sailing trip down the east coast, from Massachusetts to Florida in 1977 (pre-CFS), told in a combination of poems, actual excerpts from her ship's log, and maps and pictures. Although I'm not usually much of a poetry fan, I thoroughly enjoyed Pris' book. You can read my review at Book By Book, my book blog. You can also visit Pris' poetry website.
Enjoy!
Enjoy!
Monday, May 24, 2010
Movie Monday 5/24
Sorry I've been so out of touch lately. This time of year always gets so busy - end of soccer season, all sorts of end-of-school activities (we have something going on every night this week!), and getting ready for vacation. Plus, my mom and her husband were here for two days last week, I've had book groups three weeks in a row (an unusual occurrence), and I spent all day Friday driving Jamie to NJ and back for a doctor's appointment. By last Friday evening, Ken and I were both hugely overwhelmed and completely exhausted. It took me all weekend to recuperate. Today, I had to take BOTH boys for x-rays (one wrist and one ankle, both soccer injuries). Thankfully, there are no broken bones - casts and summer don't mix well!
On the plus side, I am feeling a bit better (when I'm not exhausted from doing too much!). I was thrilled last week to finally clear out the hundreds of unread e-mails that had been sitting in my inbox for months, and I cleared off the stacks of paper from the kitchen counter. Both of those achievements are huge and very good for my mental well-being!
So, I hope to get back to more regular blogging this week and to have some time to visit blogs, too.
Meanwhile, it's Movie Monday...We spent some of the weekend catching up on TV shows we taped during the week - so many season finales and no time to watch! But we did fit in a couple of movies:
Have you seen any good movies lately?
On the plus side, I am feeling a bit better (when I'm not exhausted from doing too much!). I was thrilled last week to finally clear out the hundreds of unread e-mails that had been sitting in my inbox for months, and I cleared off the stacks of paper from the kitchen counter. Both of those achievements are huge and very good for my mental well-being!
So, I hope to get back to more regular blogging this week and to have some time to visit blogs, too.
Meanwhile, it's Movie Monday...We spent some of the weekend catching up on TV shows we taped during the week - so many season finales and no time to watch! But we did fit in a couple of movies:
- We watched Earth with the kids on Saturday. As you'd expect, the cinematography is absolutely amazing - we kept calling out, "Wow!" and "Did you see that?" And we were pleased to find that the movie tells a story - actually several stories, following a family of polar bears, a herd of elephants, and other animals trying to survive amid the challenges of nature. Both the nature scenes and the animals are awe-inspiring, and thr stories were fascinating. We all enjoyed it very much.
- Ken and I watched Sunshine Cleaning. It's a funny and heartwarming story of two sisters, played by Amy Adams and Emily Blunt, who go into the crime-scene cleaning business. It's a disgusting business, but the money is good. Meanwhile, the sisters are each struggling with their own issues, which are emphasized by some of the death scenes they clean up. OK, it sounds sort of gross and morbid the way I'm describing it, but it's a surprisingly hopeful movie. We both liked it very much...and you know Ken doesn't like depressing movies!
Have you seen any good movies lately?
Wednesday, May 19, 2010
Pediatric CFS In the News
Annette Whittemore and Dr. Donnica Moore appeared yesterday on Nevada Newsmakers, talking about pediatric CFS. I think this is the beginning of their efforts to bring more attention to how CFS affects kids and teens.
You can listen to their interview at the Nevada Newsmakers website (it's listed under Tuesday, May 18). It takes a few minutes to download the video - and there are a bunch of local ads to get through! - but it's worthwhile.
Busy, busy here (and feeling rotten) - my mom and her husband come in today to stay for a couple of days and I'm hoping to get to my book group tonight. I'm trying to figure out how to manage two dinners with the least amount of work!
You can listen to their interview at the Nevada Newsmakers website (it's listed under Tuesday, May 18). It takes a few minutes to download the video - and there are a bunch of local ads to get through! - but it's worthwhile.
Busy, busy here (and feeling rotten) - my mom and her husband come in today to stay for a couple of days and I'm hoping to get to my book group tonight. I'm trying to figure out how to manage two dinners with the least amount of work!
Tuesday, May 18, 2010
CFS/FM Treatment Webinar Thursday
The CFIDS Association is sponsoring another webinar this Thursday:
Treating CFS and FM: The Stepwise Approach by Dr. Charles Lapp
Thursday, May 20 12:30 - 1:45 pm Eastern Time
You can register here.
This should be a good one - Dr. Lapp is excellent. He's been working with CFS patients for decades. In fact, he's the author of that great article on treating sleep dysfunction that I wrote about recently.
I wish I could participate, but - once again - it's right at my naptime!! Also, my mom will be here on Thursday. Maybe the next one...
Treating CFS and FM: The Stepwise Approach by Dr. Charles Lapp
Thursday, May 20 12:30 - 1:45 pm Eastern Time
You can register here.
This should be a good one - Dr. Lapp is excellent. He's been working with CFS patients for decades. In fact, he's the author of that great article on treating sleep dysfunction that I wrote about recently.
I wish I could participate, but - once again - it's right at my naptime!! Also, my mom will be here on Thursday. Maybe the next one...
Monday, May 17, 2010
Movie Monday 5/17
Just got home - busy afternoon and evening! Ken is off on a business trip, and the boys and I all got much-needed haircuts tonight, then grabbed some dinner out. Time for sweats and TV!
I've been feeling much better the past few days (aside from a 24-hour allergy attack Saturday after a windy morning on the soccer field). I'm finally getting caught up on stuff that's been piling up for months....just in time, because I was really feeling at the breaking point last week. More on that later this week. For now...
It's Movie Monday! After two busy weekends, it was nice to have a quiet weekend to ourselves. Well, not all that quiet, with soccer games and two birthday parties for the boys, but Ken and I got to watch movies Friday and Saturday, so that was nice:
I've been feeling much better the past few days (aside from a 24-hour allergy attack Saturday after a windy morning on the soccer field). I'm finally getting caught up on stuff that's been piling up for months....just in time, because I was really feeling at the breaking point last week. More on that later this week. For now...
It's Movie Monday! After two busy weekends, it was nice to have a quiet weekend to ourselves. Well, not all that quiet, with soccer games and two birthday parties for the boys, but Ken and I got to watch movies Friday and Saturday, so that was nice:
- Friday we watched one of my all-time favorite movies, Parenthood. Ken and the boys got me the DVD for Mother's Day. It's been years since I've seen it, but I still love it! It's a hilarious and heartwarming movie about family, starring Steve Martin, Dianne West, Mary Steenburgen, and a very young Keanu Reeves. It's directed by Ron Howard and, even after all these years, it still makes me laugh out loud and cry (happy tears, not sad!) The new NBC TV show (also directed by Ron Howard) based on the movie is also great - they've captured that same mix of humor and drama. It's on past my bedtime, but I've been watching it online while I eat lunch, and I'm totally hooked.
- Saturday we watched The Informant, a release from last year starring Matt Damon, as Mark Whitacre, the highest-ranking corporate whistle-blower in US history. The movie is based on a true story, and Matt Damon is great in the leading role as the cheerful, babbling Whitacre. He goes to the FBI to report on price fixing in the food additive industry, confident that he will emerge as a hero. Reluctant at first, he ends up really enjoying his role as secret agent, taping conversations with his boss and co-workers and amassing evidence for the FBI's case. The movie is very funny at times but also increasingly confusing, as things begin to unravel for Whitacre. We both enjoyed the movie.
Friday, May 14, 2010
CFSAC Testimony and Looking for Parents of Kids with CFS
Just a quick note.
Here is a link to ALL of the testimony from the CFSAC meeting on Monday, both those were present and spoke at the meeting, as well as those like me who submitted written testimony ahead of time. It's quite a list! Lots of voices out there representing us - let's hope someone is listening!
Also, Annette Whittemore (yes, THAT Whittemore) is putting together some sort of public education effort on pediatric CFS and how it effects kids. Right now, I think they're looking at a TV segment featuring Dr. Donnica Moore, a wonderful CFS spokesperson who has appeared on Good Morning America and on the Dr Oz Show and who's own teen son has CFS.
So, they're looking for parents who might be willing to share their kids' or teens' CFS stories. I've already offered mine, based on my written testimony for CFSAC. Please e-mail me (my e-mail link is on my profile page) if you might be interested in helping with this project. Let's spread the word and help our kids!!
Here is a link to ALL of the testimony from the CFSAC meeting on Monday, both those were present and spoke at the meeting, as well as those like me who submitted written testimony ahead of time. It's quite a list! Lots of voices out there representing us - let's hope someone is listening!
Also, Annette Whittemore (yes, THAT Whittemore) is putting together some sort of public education effort on pediatric CFS and how it effects kids. Right now, I think they're looking at a TV segment featuring Dr. Donnica Moore, a wonderful CFS spokesperson who has appeared on Good Morning America and on the Dr Oz Show and who's own teen son has CFS.
So, they're looking for parents who might be willing to share their kids' or teens' CFS stories. I've already offered mine, based on my written testimony for CFSAC. Please e-mail me (my e-mail link is on my profile page) if you might be interested in helping with this project. Let's spread the word and help our kids!!
Thursday, May 13, 2010
CFS and XMRV Featured Again in Science Magazine
The May 14, 2010 issue of Science includes five articles that relate to the original XMRV paper published in Science in October 2009. Each of these is comments submitted by various medical professionals/researchers regarding the original study; authors were given a chance to update their comments before publication this month.
These are all available in full online for now, but may not be available for long:
These are all available in full online for now, but may not be available for long:
- Criticism of the original study, submitted by doctors at University of Edinburgh shortly after the October 2009 publication of the original study.
- Criticism of the original study, submitted by Peter White, Simon Wessely, et.al. in the UK shortly after the October 2009 publication of the original study.
- Criticism of the original study, submitted by doctors in the Netherlands shortly after the October 2009 publication of the original study.
- Response to the above criticisms and to the three negative XMRV studies by the original XMRV study's authors.
- Additional support material.
Wednesday, May 12, 2010
International ME/CFS Awareness Day
Today is International CFS/ME Awareness Day. Whether you have CFS or have a friend or family member with CFS, here are some simple things you can do to help educate the world and help promote research for CFS, even if you can't leave your house:
You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
I've made iSearchiGive my homepage so that all of my searches earn money for the CFIDS Association.
If you have CFS, take a few minutes to fill out the research questionnaire at the Whittemore-Peterson Institute - your answers can help them create a comprehensive database that will help future CFS research and will also allow you to be considered for their studies, if you want.
Do what you can to help and spread the word!
- Participate in the CFIDS Association's Virtual Lobby Day. This helps to spread the word about CFS to your local media and your elected officials. There are 4 actions listed right now, and it only takes about 10 minutes to do them all (you can also choose to just do 1 or 2 of the actions). I do this every year, and it really works! Two years ago, both our local town newspaper and our city newspaper published the letters I sent through the CAA's Action center. I also received responses from my Senators and Representative, as well as a thank you note from a local representative who has a family member with CFS. It works and it's easy - try it! I'm headed there next.
- Tell your friends and family about CFS. I plan to post a link to this blog post on Facebook today. During the first few years after I was diagnosed, I e-mailed my family and friends to tell them more about CFS and how they could help. Several of my friends thanked me and said they wanted to know more. Here are some sources of information you can provide to others:
- About CFIDS by the CFIDS Association
- ME/CFS Facts by Phoenix Rising
- The CDC's information on CFS
- My own article, CFS: An Invisible Illness, published last fall on Lively Woman
You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
- iGive
- Good Shop
- CFIDS Association's Shop and Give links
I've made iSearchiGive my homepage so that all of my searches earn money for the CFIDS Association.
If you have CFS, take a few minutes to fill out the research questionnaire at the Whittemore-Peterson Institute - your answers can help them create a comprehensive database that will help future CFS research and will also allow you to be considered for their studies, if you want.
Do what you can to help and spread the word!
Monday, May 10, 2010
CFSAC Meeting Today in Washington, DC
Happy (belated) Mother's Day to all you moms out there!
No Movie Monday today because we spent the weekend in Connecticut at my mom's house with my sister and her family. Ten of us in one house for 3 days! It was, of course, completely exhausting - constant noise and activity - but it was also very nice to see everyone and spend time with my family. I especially enjoyed playing with my little niece and nephew. We took a walk on the beach (where my 4-year old nephew went absolutely crazy catching tiny crabs with Jamie and Craig), ate one huge meal after another, and played lots of games. It was fun teaching my niece to play jacks and pick-up sticks These are two of Craig's favorites - he's been quite impressed with my jacks skills which are surprisingly intact after a 35-year hiatus! (My mom is pretty amazing at jacks, too!) And Jamie totally whipped me 8 games out of 9 in backgammon. I'm wiped out today, but it was a good weekend.
I received lots of nice gifts for Mother's Day from Ken and the boys (and from my mom!), but the highlight was a gorgeous necklace and earrings from fellow-blogger and CFS-mom Lori's Waterstone Jewelry. Lori is so talented! Her jewelry is beautiful, and I can't wait to wear my new gifts.
On to more serious business...Today is the CFSAC meeting in Washington, DC, with the new committee members. The meeting is being broadcast live today from 8:30 - 4 pm Eastern time. Here's the link to watch (second one down). A local mom with two sons who have severely disabling CFS asked if I wanted to go with her to attend the meeting, but I knew the weekend would do me in. Instead, I submitted written testimony that I hope will be read during the meeting or at least included in the minutes. Here's what I submitted:
"My name is Sue Jackson, and I have had CFS since March 2002. Both of my sons, ages 12 and 15, have it also. I have always wanted to come to a CFSAC meeting, but I need to nap every day, and I know that attending would cause a relapse.
We need more research into the biological basis for CFS and into effective treatments. We need more education for doctors so that the estimated 80% of patients with undiagnosed CFS can finally get some answers. Although all of the major advances in CFS research so far have come from private funding, we need the involvement of the CDC and NIH in order to help the millions of Americans, including kids and teens, who are disabled by CFS and can’t find a knowledgeable doctor or an effective treatment."
No Movie Monday today because we spent the weekend in Connecticut at my mom's house with my sister and her family. Ten of us in one house for 3 days! It was, of course, completely exhausting - constant noise and activity - but it was also very nice to see everyone and spend time with my family. I especially enjoyed playing with my little niece and nephew. We took a walk on the beach (where my 4-year old nephew went absolutely crazy catching tiny crabs with Jamie and Craig), ate one huge meal after another, and played lots of games. It was fun teaching my niece to play jacks and pick-up sticks These are two of Craig's favorites - he's been quite impressed with my jacks skills which are surprisingly intact after a 35-year hiatus! (My mom is pretty amazing at jacks, too!) And Jamie totally whipped me 8 games out of 9 in backgammon. I'm wiped out today, but it was a good weekend.
I received lots of nice gifts for Mother's Day from Ken and the boys (and from my mom!), but the highlight was a gorgeous necklace and earrings from fellow-blogger and CFS-mom Lori's Waterstone Jewelry. Lori is so talented! Her jewelry is beautiful, and I can't wait to wear my new gifts.
On to more serious business...Today is the CFSAC meeting in Washington, DC, with the new committee members. The meeting is being broadcast live today from 8:30 - 4 pm Eastern time. Here's the link to watch (second one down). A local mom with two sons who have severely disabling CFS asked if I wanted to go with her to attend the meeting, but I knew the weekend would do me in. Instead, I submitted written testimony that I hope will be read during the meeting or at least included in the minutes. Here's what I submitted:
"My name is Sue Jackson, and I have had CFS since March 2002. Both of my sons, ages 12 and 15, have it also. I have always wanted to come to a CFSAC meeting, but I need to nap every day, and I know that attending would cause a relapse.
Although my life has been dramatically changed because of CFS and I am severely limited in what I can do, I want to primarily focus on my sons today because pediatric CFS is rarely talked about – and even more rarely researched – and it is a much larger problem than most people understand. In addition to my two sons, I personally know seven other kids with CFS just in my local area, and I’m sure there are many more I haven’t met or who haven’t been properly diagnosed. I write a blog about living with CFS, and I receive e-mails every week from parents whose kids are completely disabled by CFS.
My older son, Jamie, started showing symptoms of CFS when he was nine years old and in 3rd grade. The symptoms came and went for a couple of years, then become suddenly much worse when he was eleven. Jamie missed 60 days of 5th grade and was bed-ridden about 50% of the time. When he started middle school the next year, we didn’t even bother counting the days’ absent. After some intense battles with teachers and administrators (which left me much sicker), the school finally agreed to waive all attendance requirements and all non-essential courses. Jamie took two classes with a homebound instructor and took the other three required classes in school. He made it to those classes about 60% of the time, with me driving him back and forth to school several times a day so he could rest in between classes (on the days he was able to go at all).
My younger son, Craig, began showing CFS symptoms when he was just six years old, in 1st grade. We recognized the sore throat, flu-like aches, and exhaustion after mild exercise, but his frequent chest pains and back pain scared us. After many doctor’s visits, tests, and conferring with some CFS experts, we were fairly certain he also had CFS, though milder than his brother’s. We didn’t want him to think of himself as a sick kid at such a young age, but when he missed 35 days of school in 3rd
We were very, very fortunate to be able to see Dr. David Bell and to confer with Dr. Peter Rowe. They explained Orthostatic Intolerance (OI, a condition of low blood volume and low blood pressure) to us and worked with our sons’ local pediatrician to treat it. Kids often respond well to OI treatment, and we were fortunate that it worked quite effectively for our kids. Both boys were able to return to school full-time.
Although we are grateful for this treatment that allows them to live more normal lives, CFS is still a significant part of daily life for them. They go to bed at 8 pm every night, even the 15-year old. They have to be careful not to overdo and will experience a severe flare-up of CFS symptoms if they do too much. A sleep-over at a friend’s house can result in several days of being too sick to get up off the couch. They each still miss between 25 and 35 days of school each year due to CFS flare-ups. They both take a lot of medication every day, and we know if they stopped the medications, they’d go right back to being bedridden much of the time.
My husband and I worry about their futures. Our older son will be college-age in a couple of years, but will he be able to leave home? Even if he does make it through college, will he ever be able to handle a full-time job? What if the medications don’t work as well for him as he gets older? What if he gets worse? These unknowns are frightening, but we know that we are the lucky ones, that there are thousands of kids across the US who are completely bedridden with CFS and unable to attend school at all.
After living a perfectly healthy life for 37 years, I got CFS in 2002, and each of my sons became ill within a couple years of that. We are living proof that this illness has both genetic and infectious roots that need to be further investigated. Families like ours, with more than one person with CFS, are not uncommon, as the 2006 New Jersey CFS Association study showed.
Thursday, May 06, 2010
Another Long Day
Ugh...I am totally wiped out this evening. I had my visit with the Lyme doctor in New Jersey today - almost a 2-hour drive there and back, plus I did my routine stop at the Target across the street (spent an obscene amount of money stocking up on necessities). Now I have a killer headache and seem to have hit a brick wall.
This is a really busy week for us, coming up (as opposed to this relaxing week we've just had!). We have three Moms/Grandmas to buy for for Mother's Day - all of them out of state - plus my mom's and Ken's dad's birthdays. Tomorrow we head up to Connecticut for the annual Mother's Day/Mom's Birthday Weekend-Long Bash at my mom's house with my sister and her family. Two of the gifts Ken and I planned to get for her haven't arrived in time, so we're scrambling a bit.
So, I'm at the point I arrive at before every trip...the point of scrapping the long list of things I wanted to do before I leave and saying, "OK, what absolutely MUST be done before we leave and what can I push off until we get back?" Providing some information and resources on Lyme disease and its associated co-infections here on my blog (as I promised yesterday) got pushed until next week!
OK, I better get back to ordering gifts online...thank goodness for the internet!!
This is a really busy week for us, coming up (as opposed to this relaxing week we've just had!). We have three Moms/Grandmas to buy for for Mother's Day - all of them out of state - plus my mom's and Ken's dad's birthdays. Tomorrow we head up to Connecticut for the annual Mother's Day/Mom's Birthday Weekend-Long Bash at my mom's house with my sister and her family. Two of the gifts Ken and I planned to get for her haven't arrived in time, so we're scrambling a bit.
So, I'm at the point I arrive at before every trip...the point of scrapping the long list of things I wanted to do before I leave and saying, "OK, what absolutely MUST be done before we leave and what can I push off until we get back?" Providing some information and resources on Lyme disease and its associated co-infections here on my blog (as I promised yesterday) got pushed until next week!
OK, I better get back to ordering gifts online...thank goodness for the internet!!
Wednesday, May 05, 2010
Update on Bartonella...Or Not
Whew, what an emotional rollercoaster I've been on this week! I've spent every waking moment researching bartonella (sorry I haven't been to any blogs this week) and every sleeping moment worrying about it (which does not make for good quality sleep!) I went from elation that maybe Jamie has something to explain some of his symptoms that can be treated to despair at learning that bartonella can be as hard to treat and get rid of as Lyme, especially when it goes undiagnosed for a while. We finally met with Jamie's pediatrician this morning.
Bottom line is that she doesn't think he has bartonella, but - as always - she took our concerns very seriously and spent a full hour with us, thoroughly examining Jamie and questioning him about his symptoms. She's also going to order the bartonella tests, plus some other bloodwork, but first wants to consult with some experts on which tests are most accurate (understanding that none of them are very good and all are prone to false negatives).
Her take on Jamie's symptoms which could possibly be associated with bartonella:
So, I'm feeling relieved and cautiously optimistic now. We'll see what happens, but I know he's in good hands. I've said it here many times before, but we are so very fortunate to have this pediatrician. She is always thorough and attentive, always willing to learn new things and consult with other experts, and always takes our concerns seriously.
Interestingly, a friend of Jamie's at school probably DOES have bartonella. When they took swimming in gym this winter, Jamie noticed similar marks on his friend's back. I sent some information on bartonella into school with Jamie to give to his friend. Jamie asked him how he's been feeling lately, and he said, "Awful. I'm really tired all the time and have no appetite." (fatigue and loss of appetite are two bartonella symptoms). When Jamie gave him the information, he looked at the Symptom section and said, "Oh my gosh, I have every one of these symptoms!" And this is a kid who is normally healthy, without any chronic conditions. So, regardless of what happens with Jamie, maybe we've helped someone else get diagnosed.
It's time to go pick up Craig, but I'll post symptoms of all the Lyme co-infections tomorrow. It's still something to be vigilant about!
if you think you or your child might have bartonella, check out these photos of various types of bartonella rash.
Bottom line is that she doesn't think he has bartonella, but - as always - she took our concerns very seriously and spent a full hour with us, thoroughly examining Jamie and questioning him about his symptoms. She's also going to order the bartonella tests, plus some other bloodwork, but first wants to consult with some experts on which tests are most accurate (understanding that none of them are very good and all are prone to false negatives).
Her take on Jamie's symptoms which could possibly be associated with bartonella:
- She doesn't think the lines on his back are a bartonella rash. She says those lines are very common on teens and are normal growth striations and that they differ from bartonella striations in their coloring and their texture. She did a thorough check of other parts of his body where bartonella rashes are common - on the side of the torso under the arms, lower on his back and thighs, stomach, higher on his back - and didn't see anything. Still, she agrees it's worth checking out. She said she knows how common bartonella is in our area and has no doubt there are many people walking around with it who don't know they have it.
- She questioned him about the pain in the soles of his feet and did a thorough exam. She thinks this may be more of a vascular problem, due to OI, especially since the pain only occurs when Jamie first starts to exercise and then goes away completely after he rests for a few minutes. It does happen every time he plays soccer or plays outside, but once the pain subsides 10 minutes later, he's able to go on and play a 90-minute soccer game without any pain at all. So, she wants him to check for color changes the next time the pain hits and also try some lying-down legs exercises before starting to run to see if improving circulation before exercise helps.
- She also questioned him about his headaches, GI problems, and light sensitivity (all of which are often "normal" CFS symptoms).
- Finally, there's the fact that Jamie's CFS symptoms are not particularly flared up - he's been pretty steady for the past year. When I got Lyme two summers ago, I knew immediately something new was going on because all of my "normal" CFS symptoms were much worse.
So, I'm feeling relieved and cautiously optimistic now. We'll see what happens, but I know he's in good hands. I've said it here many times before, but we are so very fortunate to have this pediatrician. She is always thorough and attentive, always willing to learn new things and consult with other experts, and always takes our concerns seriously.
Interestingly, a friend of Jamie's at school probably DOES have bartonella. When they took swimming in gym this winter, Jamie noticed similar marks on his friend's back. I sent some information on bartonella into school with Jamie to give to his friend. Jamie asked him how he's been feeling lately, and he said, "Awful. I'm really tired all the time and have no appetite." (fatigue and loss of appetite are two bartonella symptoms). When Jamie gave him the information, he looked at the Symptom section and said, "Oh my gosh, I have every one of these symptoms!" And this is a kid who is normally healthy, without any chronic conditions. So, regardless of what happens with Jamie, maybe we've helped someone else get diagnosed.
It's time to go pick up Craig, but I'll post symptoms of all the Lyme co-infections tomorrow. It's still something to be vigilant about!
if you think you or your child might have bartonella, check out these photos of various types of bartonella rash.
Monday, May 03, 2010
Movie Monday 5/3
I've had so much on my mind with Lyme and bartonella that I almost forgot about Movie Monday! I was completely, totally exhausted today because I haven't been sleeping well the last few days (I wonder why...), so it was a two-nap day. As soon as my Dad left this morning and I called the pediatrician's office to make an appointment for Jamie (Wednesday), I went back to bed. I did enjoy my Dad's visit, though, and I'm feeling better this evening.
So, it was a busy weekend, and we only had time for one movie:
So, it was a busy weekend, and we only had time for one movie:
- The Brothers Bloom -The brothers referred to in the title, Bloom and Steven (played by Mark Ruffalo), have spent their entire lives as con men, staging ever-more complicated cons. Bloom is fed up with this fake life and wants out, but Steven - who loves coming up with convoluted schemes - convinces him to stick it out for one more, ultimate con. According to Steven, the perfect con is one where everyone gets what they want. He sets his sights on the wealthy and lonely Penelope. I'm not sure whether my Dad liked this one, but Ken and I both enjoyed it. It's a bit quirky (not again!) at the beginning, but we soon got lost in following the complicated scheme and trying to figure out who was actually conning who. Lots of fun.
Sunday, May 02, 2010
BIG NEWS: Our Son Has Bartonella!
Wow, I am completely stunned, in shock. I was freaking out Friday night! I discovered that our older son has Bartonella, a tick-borne infection (sometimes called a Lyme co-infection). His symptoms fit so perfectly that I can't believe we missed it - he's probably had it ever since his Lyme disease infection 3 years ago. Here's the story...
 |
| Bartonella marks on low back |
After soccer practice Friday night, our younger son pointed out that the weird lines on his brother's back had faded a bit. I took a look at these strange marks we've been puzzling over for many months when a little bell went off in my mind. I sort of half-remembered reading some discussion about "stretch mark-like lines on the back" just this week on the Pediatric Network, a discussion list on Yahoo Groups for parents of kids who have CFS, FM, OI, and/or Lyme (Update: that group was replaced by the Parents of Kids & Teens with ME/CFS and Related Illnesses Facebok group). That description matched what we saw on our son's back, so after the boys went to bed, I went down to the computer and looked back through this week's messages. There it was--one of the moms had posted that bartonella causes a rash that can look like stretch marks across the lower back. She advised another mom to search the internet for images of "bartonella rash." I did, and one of the pictures I found exactly matched the strange lines on our son's back. That's when I started freaking out.
I printed the picture and showed the boys in the morning, and our younger son said, "Is that a picture of (my brother)'s back?" That's how closely the photo matched! The thing is, he's had these weird lines at least since last summer. We never even considered that it might be a rash. I did more searching on the internet and sent some messages to other parents on the Pediatric Network. What I learned got me even more excited. Though some of bartonella's symptoms (like Lyme's symptoms) are indistinguishable from our son's normal ME/CFS symptoms, others stood out to me: headaches and painful foot soles. On the way home from soccer Friday, our son was telling me how his foot pain was getting worse: a burning, aching sensation on the soles of his feet when he plays outside, runs, or plays soccer. Again, this has gone on for a long time--he first noticed it back in September in gym class. And, although he occasionally gets headaches with ME/CFS, they've been more frequent lately.
I can't believe we've missed this for so long! These symptoms are unique and so obvious when you know what to look for. And I've been so worried lately that his ME/CFS seems to be getting worse or staying the same when lots of other kids start to improve at about this age. Bartonella is a bacterial infection that is treatable with antibiotics. As you probably know, any underlying infection makes ME/CFS much worse. Treating the bartonella could help our son improve! I'm so excited--I can't wait to see his doctor. I'm going to call first thing tomorrow morning.
Here's more information on bartonella, including another picture of a different type of bartonella rash. Apparently, there are several different antibiotics that work against it, and Zithromax is the first choice for kids under 18.
 |
| Bartonella marks behind armpit |
The lesson here? It's something my own doctor has told me over and over. I've said it before here, but it certainly bears repeating:
"ALWAYS check out any new or changed symptoms, even if they seem trivial or strange. DON'T assume everything is "just" ME/CFS. Just because you have ME/CFS doesn't mean you can't get something else."
How could I have forgotten this? Why didn't we get those weird lines checked out sooner?
The other lesson is another one I've said here before...
If you have ME/CFS, consider the possibility of Lyme disease and its co-infections. It doesn't matter where you live; Lyme is now in every state in the US and on every continent around the world. Its symptoms can mimic ME/CFS. And, obviously, don't overlook the co-infections! These can occur with or without Lyme and have some different symptoms. Here's an overview of Lyme co-infections and my own post on Why Everyone with ME/CFS Should Be Evaluated for Tick Infections, which includes basic information about the infections, the limits of testing, symptoms, how to find a specialist, and more.
Wow. I've had trouble sleeping all weekend because my head is just spinning with all this information and its implications for our son. I'll let you know how his doctor visit goes.
UPDATE 2-24-26:
This was a turning point for our son, who is now 31 years old, works full-time, supports himself, and lives with his fiance. We took him to a Lyme specialist (LLMD). It turned out that he also had babesia, another tick-borne infection (that isn't even a bacteria so requires different treatments) and still had Lyme, as suspected, in addition to bartonella.
Treatment was long and complicated, over many years, but he is dling much better these days. He got rid of the babesia but still has bartonella and Lyme (the immune dysfunction of ME/CFS makes it very difficult to fully get rid of these infections). But, they are both well-managed with on-going herbal treatments. He can tell if he skips his treatments and quickly gets back on track. There were many factors in his improvements over the years, but if we hadn't gotten these infections diagnosed and begun treatment when we did, he would have only gotten worse over the years.
Do you or your child have Lyme disease or other tick infections or do you suspect you might?
Was diagnosis difficult?
What treatments have helped?
You can also connect with me on Instagram, Facebook ,and Twitter.
Subscribe to:
Posts (Atom)