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)?
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.
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Friday, May 28, 2010
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: Jamie Has Bartonella!
Wow, I am completely stunned, in shock. I was freaking out Friday night! I discovered that Jamie 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 for at least 9 months, maybe even since his last Lyme infection 3 years ago. Here's the story...
After soccer practice Friday night, Craig pointed out that the weird lines on Jamie'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. That description matched what we saw on Jamie'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 Jamie's back. That's when I started freaking out.
I printed the picture and showed the boys in the morning, and Craig said, "Is that a picture of Jamie's back?" That's how closely the photo matched Jamie. 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 Jamie's normal CFS symptoms, others stood out to me: headaches and painful foot soles. On the way home from soccer Friday, Jamie 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 CFS, they've been more frequent lately.
So, 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 Jamie's CFS seems to be getting worse or staying the same when lots of other kids start to improve at about this age. Bartonella is treatable with antibiotics. As you probably know, any underlying infection makes CFS much worse. Treating the bartonella could help Jamie 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.
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" CFS. Just because you have 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 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 almost every country around the world. Its symptoms can mimic 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 a chart of all tick-borne illnesses and their symptoms. And some basic information on Lyme disease.
Wow. I've had trouble sleeping all weekend because my head is just spinning with all this information and its implications for Jamie. I'll let you know how his doctor visit goes.
After soccer practice Friday night, Craig pointed out that the weird lines on Jamie'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. That description matched what we saw on Jamie'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 Jamie's back. That's when I started freaking out.
I printed the picture and showed the boys in the morning, and Craig said, "Is that a picture of Jamie's back?" That's how closely the photo matched Jamie. 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 Jamie's normal CFS symptoms, others stood out to me: headaches and painful foot soles. On the way home from soccer Friday, Jamie 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 CFS, they've been more frequent lately.
So, 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 Jamie's CFS seems to be getting worse or staying the same when lots of other kids start to improve at about this age. Bartonella is treatable with antibiotics. As you probably know, any underlying infection makes CFS much worse. Treating the bartonella could help Jamie 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.
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" CFS. Just because you have 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 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 almost every country around the world. Its symptoms can mimic 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 a chart of all tick-borne illnesses and their symptoms. And some basic information on Lyme disease.
Wow. I've had trouble sleeping all weekend because my head is just spinning with all this information and its implications for Jamie. I'll let you know how his doctor visit goes.