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.
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, June 24, 2010
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?
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Friday, April 30, 2010
Life Is Good
This week was a huge improvement over the last two. I am finally, FINALLY, feeling good again, after more than six months of being mostly flat on my back. Obviously, I still have CFS, but I feel as if I've gotten my life back.
I went to lunch at a friend's house this week, ate lunch out at a nice restaurant with Ken (it was Restaurant Week here, with good deals), cooked dinner almost every night, ran errands, and today went to the grocery store. And...drumroll please....twice this week, I did stomach crunches and push-ups without crashing! I was a bit appalled to find I can only do 10 push-ups now. Before CFS, I could do more than twenty, and even just a couple of years ago, I could still manage 14. Just goes to show how being completely sedentary can weaken you. I hope to become stronger again - baby steps!
My Dad is visiting for the weekend, so that should be fun. The last time he was here, I was horribly sick. This afternoon, I was able to sit at the table and play a game with him and the kids. Such a small thing that means so much!
So, I may not have time to post again this weekend. We have two soccer games tomorrow. My biggest concern for the weekend is how to stay out of the sun when it's 90 degrees and sunny out (my Lyme meds make me extremely sun sensitive).
Hope you have a good weekend, too!
I went to lunch at a friend's house this week, ate lunch out at a nice restaurant with Ken (it was Restaurant Week here, with good deals), cooked dinner almost every night, ran errands, and today went to the grocery store. And...drumroll please....twice this week, I did stomach crunches and push-ups without crashing! I was a bit appalled to find I can only do 10 push-ups now. Before CFS, I could do more than twenty, and even just a couple of years ago, I could still manage 14. Just goes to show how being completely sedentary can weaken you. I hope to become stronger again - baby steps!
My Dad is visiting for the weekend, so that should be fun. The last time he was here, I was horribly sick. This afternoon, I was able to sit at the table and play a game with him and the kids. Such a small thing that means so much!
So, I may not have time to post again this weekend. We have two soccer games tomorrow. My biggest concern for the weekend is how to stay out of the sun when it's 90 degrees and sunny out (my Lyme meds make me extremely sun sensitive).
Hope you have a good weekend, too!
Thursday, April 29, 2010
New CFSAC Members Announced
I just visited the blog My Life As I "StandUp2ME" and found this list of new CFSAC members (thanks for posting it!):
NEW CFSAC Committee Members:
Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14 (new)
Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14 (new)
Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14 (new)
Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14 (new)
Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14 (new)
I'm excited - Dr. Susan Levine is the Infectious Disease specialist I see in NYC, the one who prescribes low-dose naltrexone for me! She's a great choice - she's been specializing in CFS for many years, and, as an Infectious Disease specialist, she is perfectly suited to understand and analyze all the new research done recently and still to come on how infections relate to CFS. I'm not familiar with the other names on the list, but if they're as well-qualified as Dr. Levine, then I'm happy! Anyone else know the other names on the list?
(NOTE: The CFSAC is the CFS Advisory Committee, the overseeing committee for CFS within the US government, working directly with the CDC and NIH. Their next meeting is May 10 in Washington. I submitted testimony to be read at the meeting, but I haven't heard back yet).
NEW CFSAC Committee Members:
Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14 (new)
Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14 (new)
Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14 (new)
Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14 (new)
Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14 (new)
I'm excited - Dr. Susan Levine is the Infectious Disease specialist I see in NYC, the one who prescribes low-dose naltrexone for me! She's a great choice - she's been specializing in CFS for many years, and, as an Infectious Disease specialist, she is perfectly suited to understand and analyze all the new research done recently and still to come on how infections relate to CFS. I'm not familiar with the other names on the list, but if they're as well-qualified as Dr. Levine, then I'm happy! Anyone else know the other names on the list?
(NOTE: The CFSAC is the CFS Advisory Committee, the overseeing committee for CFS within the US government, working directly with the CDC and NIH. Their next meeting is May 10 in Washington. I submitted testimony to be read at the meeting, but I haven't heard back yet).
Tuesday, April 27, 2010
XMRV Update
I've been meaning to post an update on the XMRV/CFS research but just haven't had the time to sort through everything (you're probably sick of hearing this, but I still haven't gotten through those hundreds of unread e-mails from my vacation two weeks ago!).
So, I was thrilled when, once again, Cort Johnson over at Phoenix Rising posted an excellent, thorough summary of all the latest XMRV news at his blog, Bringing the Heat.
Go on over and take a look - Cort has a real talent for distilling lots of complicated information into an understandable explanation. Bottom line is this:
So, I was thrilled when, once again, Cort Johnson over at Phoenix Rising posted an excellent, thorough summary of all the latest XMRV news at his blog, Bringing the Heat.
Go on over and take a look - Cort has a real talent for distilling lots of complicated information into an understandable explanation. Bottom line is this:
- The negative replication studies in Europe have had a very bad effect on further funding for research into XMRV's role in CFS.
- There are several possible explanations for the negative results in the European studies, and WPI and the original study's authors still feel confident that XMRV is an important factor in CFS.
- In one negative study (the Dutch one, I think), its authors actually traded samples with WPI and WPI did find XMRV in 3 samples (two from CFS patients and one from a healthy control), but the study's authors went ahead and published their results without even mentioning WPI's contrasting results.
Monday, April 26, 2010
Movie Monday 4/26
I did it! I went away on the Women's Retreat for 24 hours and managed fairly well. I missed the main event (a discussion group Saturday morning on loss), but I enjoyed the rest of the weekend. It was wonderful to spend so much time with my two close friends, and I really enjoyed getting to know the other women there (10 in all). I even managed a short walk on the beach - my wonderful friends went with me, at my snail's pace, and one of them even walked back for my car when we exited the beach at the wrong street (the beach was only two blocks from the house we were staying in, but they didn't object to driving there!) We played games Saturday night, which I love, and spent a lot of time talking. There was someone there with celiac disease, so I wasn't the only one with dietary restrictions or health problems. Of course, being with other people for 24 hours was tiring, but all in all, I really enjoyed the mini getaway. I was tired Sunday, but my afternoon nap perked me up.
So, we didn't have a lot of movie time this weekend (some of the women went to see Oceans at the theater, but I opted to stay behind for games! They said it was excellent). Ken and I watched one movie on Friday night:
So, we didn't have a lot of movie time this weekend (some of the women went to see Oceans at the theater, but I opted to stay behind for games! They said it was excellent). Ken and I watched one movie on Friday night:
- One True Thing. Quick summary: I loved it; Ken didn't! He felt it was too depressing, but I love movies that are based on real life, with all of its joys and sorrows. Besides, crying over a movie sure beats crying over your own life. Yes, I both laughed and cried! The movie has an all-star cast, with Meryl Streep, William Hurt, and Renee Zellweger. Renee plays a grown daughter who lives in NYC and works as a writer at New York magazine. She comes home for a while when her mother (played by Meryl Streep) gets cancer. She has always identified with her father who is a college literature professor; her goal in life was to not become her mother who is a very happy homemaker. So, of course, this makes for a complicated - and sometimes comical - situation when she returns home to care for her mother full-time. I really liked this movie.
Friday, April 23, 2010
Weekend Plans
I am finally back on my feet (literally) today! In fact, this is the first time I've opened my laptop all day, and I'm sitting up in the recliner - I haven't laid on the couch all day - woohoo! What a relief. I spent 6 days flat on my back, with sore throat and severe aches, just for the privilege of getting my period. It just doesn't seem fair. I went back on the pill last night and woke up feeling good today.
I've had a busy day. I saw my doctor for my 6-month check-up. Not much new. I told her about the 6-month relapse I had this fall and winter, updated her on my continuing Lyme treatment and my latest lab results from the Lyme doc. I did mention these very weird abdominal pains I get about once every couple of months - severe pain on the right side that takes my breath away, then goes away after a few hours. Something similar happened the first year I got CFS - I ended up in the hospital and then my OB/GYN did exploratory laproscopy, but they never found anything. So, she's mystified (as she often is with me), but the next time it happens, she wants me to go get an x-ray while the pain is there.
She also told me about a new CFS patient she has who she'd like me to talk to. She said, "I think you two will get along well. She comes in here with notes and charts and the latest research, too!" I told her I'd be glad to talk to someone else locally who has CFS because I don't know too many (mostly kids and teens). She said, "Well, they're all patients here!" That's because she's one of the few (only?) doctors in Delaware who "gets" CFS. She's a family doctor, not a CFS expert, but she understands it as well as any of us do, she knows how to treat sleep dysfunction and OI, and she's willing to try new treatments when they come along. I'm very lucky to have stumbled onto her after seeing so many clueless doctors the first year I was sick. She was the first one who recognized I had CFS.
Anyway, since I've been flat on my back for two weeks, I also stopped at the library, bank, post office, and grocery store. I know, I know - I can hear you warning me from here! I'm really doing fine today and feeling like myself again.
So, here's the big news...I'm going away this weekend by myself! Well, not actually by myself...I mean, without my husband and kids. I'm going on a women's retreat weekend along with two of my closest friends. It's an annual event hosted by the local Unitarian church that I've always wanted to try. I'm not actually a member of the church, but I've been in its book group for five years, and we go to Christmas Eve service! Many of my friends go there, and I really like the Unitarian approach - very open-minded and tolerant, welcoming people of all backgrounds and faiths. I just don't have the energy to get too much more involved right now (plus Ken doesn't want to give up his Sunday mornings - the only day of the week we don''t have to jump up and go somewhere).
Well, I got a little off-track there - I'm sort of babbling today, aren't I? It's a sign of my energy and clear mind! Anyway, my friends convinced me to come along and have assured me its very laid back - no schedule, plenty of free time, I can take my afternoon nap, etc. It's held at the beach house of one of the church members, and they've promised me a bed (and I'll of course bring my pillows, ear plugs, meds, etc.). So, I'm a little scared to be going into an unknown situation (because of CFS), but I'm also really excited that I'll be spending most of the weekend with my friends, doing something just for me. The sad truth is that I very rarely do anything for myself. I mean, obviously, I have to take care of myself because of CFS, and I rest, etc. But I normally use all of my available energy being responsible - getting things done, working, taking care of other people. That's a topic for another post!
I think I can handle this, and I'm really looking forward to it. Wish me luck!
I've had a busy day. I saw my doctor for my 6-month check-up. Not much new. I told her about the 6-month relapse I had this fall and winter, updated her on my continuing Lyme treatment and my latest lab results from the Lyme doc. I did mention these very weird abdominal pains I get about once every couple of months - severe pain on the right side that takes my breath away, then goes away after a few hours. Something similar happened the first year I got CFS - I ended up in the hospital and then my OB/GYN did exploratory laproscopy, but they never found anything. So, she's mystified (as she often is with me), but the next time it happens, she wants me to go get an x-ray while the pain is there.
She also told me about a new CFS patient she has who she'd like me to talk to. She said, "I think you two will get along well. She comes in here with notes and charts and the latest research, too!" I told her I'd be glad to talk to someone else locally who has CFS because I don't know too many (mostly kids and teens). She said, "Well, they're all patients here!" That's because she's one of the few (only?) doctors in Delaware who "gets" CFS. She's a family doctor, not a CFS expert, but she understands it as well as any of us do, she knows how to treat sleep dysfunction and OI, and she's willing to try new treatments when they come along. I'm very lucky to have stumbled onto her after seeing so many clueless doctors the first year I was sick. She was the first one who recognized I had CFS.
Anyway, since I've been flat on my back for two weeks, I also stopped at the library, bank, post office, and grocery store. I know, I know - I can hear you warning me from here! I'm really doing fine today and feeling like myself again.
So, here's the big news...I'm going away this weekend by myself! Well, not actually by myself...I mean, without my husband and kids. I'm going on a women's retreat weekend along with two of my closest friends. It's an annual event hosted by the local Unitarian church that I've always wanted to try. I'm not actually a member of the church, but I've been in its book group for five years, and we go to Christmas Eve service! Many of my friends go there, and I really like the Unitarian approach - very open-minded and tolerant, welcoming people of all backgrounds and faiths. I just don't have the energy to get too much more involved right now (plus Ken doesn't want to give up his Sunday mornings - the only day of the week we don''t have to jump up and go somewhere).
Well, I got a little off-track there - I'm sort of babbling today, aren't I? It's a sign of my energy and clear mind! Anyway, my friends convinced me to come along and have assured me its very laid back - no schedule, plenty of free time, I can take my afternoon nap, etc. It's held at the beach house of one of the church members, and they've promised me a bed (and I'll of course bring my pillows, ear plugs, meds, etc.). So, I'm a little scared to be going into an unknown situation (because of CFS), but I'm also really excited that I'll be spending most of the weekend with my friends, doing something just for me. The sad truth is that I very rarely do anything for myself. I mean, obviously, I have to take care of myself because of CFS, and I rest, etc. But I normally use all of my available energy being responsible - getting things done, working, taking care of other people. That's a topic for another post!
I think I can handle this, and I'm really looking forward to it. Wish me luck!
Wednesday, April 21, 2010
An Inspiring and Hopeful Story
I'm still lying low, trying to wait out this crash and using most of my mental energy on actually earning some money for a change (some things are finally starting to open up again in the freelance world).
So, I thought I'd let someone else write today's blog post. I received an e-mail letter this weekend. When I read it, tears came to my eyes. I asked the writer if I could share it here. I hope you'll find it as inspiring as I did.
"I'm a 23 year old medical student that came down with a severe case of
mononucleosis in December 2009. My case was unusual and difficult to
diagnose, so I spent hours (hundreds, literally) on the internet
researching, and often came up with your blog. It was an extremely
scary time, because the 8 different doctors I saw couldn't tell me
when or if I'd get better.
I'm happy (thrilled, ecstatic) to report I'm almost healed. Yesterday
I ran 2 miles, swam 20 laps, and feel great today. I'm on my way to
the rock gym to climb for the first time since November. This morning
I found myself sitting outside, just thanking every particle of the
universe for being alive and having good health.
I wanted to tell you, and everyone else that you are networked with
and communicate with...this has changed my life path. I know now that
I will graduate medical school and go on to specialize in diseases
like yours. I never, ever thought it would take an experience as
difficult as this one to make me realize what kind of physician I am
destined to be. I will never forget the experience of 3 months into
my illness, seeing this particular doctor...I spent over a week
planning out my visit, making a little list of symptoms, and was
so...excited, that maybe I might have found someone that could finally
help me. I got there, waited anxiously for her to come in, and when
she did...she hardly listened to me. I was given a bunch of Ambien and
sent out the door. I remember coming home and actually crying because
I was so distraught in the idea that the healthcare system, in which I
had placed so much of my heart and future, was such a complete and
epic failure.
I don't know if I healed myself. I worked hard to improve my sleep, my
mental health (I got a pet cat!), and I slowly and gradually worked
into an exercise program (which was really painful at first). I
swallowed more vitamins than I knew existed. I took olive leaf,
valerian, and coconut oil. I can't say for sure that any of those
things was the one that did it. I know that most likely I just had a
severe case of mono, that was likely to end with time anyway. I know
this is nothing like CFS, and I don't pretend that my 6 month
experience was anything like your 8 year one. But this feeling of
being 'reborn'...I don't know how to describe it. Every day I feel
like I'm on borrowed time. I don't want to waste a second of it.
I promise, that as a future physician, you and everyone else that has
CFS will experience something different from me. I know now that
there is a huge difference between 'curing' and 'healing'. I'm
committed to helping those who suffer from CFS, and other
misunderstood chronic diseases as well, find the that path. I will be
a healer.
I want to thank you, personally, for providing such insight just
through your personal experiences."
Thank YOU, Jennifer, for reminding us that some people do recover and for giving us hope for the future of CFS healthcare. You're going to be an amazing doctor!
P.S. I do think she had CFS. Dr. Bell told me once that many people with virally-triggered CFS (especially post-mono/EBV) recover within the first year and are never even accurately diagnosed with CFS. In fact, the length of time it usually takes for someone to get diagnosed with CFS (a year for me) probably skewers the recovery data and misses many of the milder cases that resolve themselves.
So, I thought I'd let someone else write today's blog post. I received an e-mail letter this weekend. When I read it, tears came to my eyes. I asked the writer if I could share it here. I hope you'll find it as inspiring as I did.
"I'm a 23 year old medical student that came down with a severe case of
mononucleosis in December 2009. My case was unusual and difficult to
diagnose, so I spent hours (hundreds, literally) on the internet
researching, and often came up with your blog. It was an extremely
scary time, because the 8 different doctors I saw couldn't tell me
when or if I'd get better.
I'm happy (thrilled, ecstatic) to report I'm almost healed. Yesterday
I ran 2 miles, swam 20 laps, and feel great today. I'm on my way to
the rock gym to climb for the first time since November. This morning
I found myself sitting outside, just thanking every particle of the
universe for being alive and having good health.
I wanted to tell you, and everyone else that you are networked with
and communicate with...this has changed my life path. I know now that
I will graduate medical school and go on to specialize in diseases
like yours. I never, ever thought it would take an experience as
difficult as this one to make me realize what kind of physician I am
destined to be. I will never forget the experience of 3 months into
my illness, seeing this particular doctor...I spent over a week
planning out my visit, making a little list of symptoms, and was
so...excited, that maybe I might have found someone that could finally
help me. I got there, waited anxiously for her to come in, and when
she did...she hardly listened to me. I was given a bunch of Ambien and
sent out the door. I remember coming home and actually crying because
I was so distraught in the idea that the healthcare system, in which I
had placed so much of my heart and future, was such a complete and
epic failure.
I don't know if I healed myself. I worked hard to improve my sleep, my
mental health (I got a pet cat!), and I slowly and gradually worked
into an exercise program (which was really painful at first). I
swallowed more vitamins than I knew existed. I took olive leaf,
valerian, and coconut oil. I can't say for sure that any of those
things was the one that did it. I know that most likely I just had a
severe case of mono, that was likely to end with time anyway. I know
this is nothing like CFS, and I don't pretend that my 6 month
experience was anything like your 8 year one. But this feeling of
being 'reborn'...I don't know how to describe it. Every day I feel
like I'm on borrowed time. I don't want to waste a second of it.
I promise, that as a future physician, you and everyone else that has
CFS will experience something different from me. I know now that
there is a huge difference between 'curing' and 'healing'. I'm
committed to helping those who suffer from CFS, and other
misunderstood chronic diseases as well, find the that path. I will be
a healer.
I want to thank you, personally, for providing such insight just
through your personal experiences."
Thank YOU, Jennifer, for reminding us that some people do recover and for giving us hope for the future of CFS healthcare. You're going to be an amazing doctor!
P.S. I do think she had CFS. Dr. Bell told me once that many people with virally-triggered CFS (especially post-mono/EBV) recover within the first year and are never even accurately diagnosed with CFS. In fact, the length of time it usually takes for someone to get diagnosed with CFS (a year for me) probably skewers the recovery data and misses many of the milder cases that resolve themselves.
Tuesday, April 20, 2010
Vacation Pictures!
I forgot to mention yesterday that I've posted pictures from our Louisiana road trip on our Road Trip Blog. Check it out if you're interested. Scroll down to the April 1 post to read/view them in order.
My allergies have finally improved a bit - most of the trees here are now past their blooming stage (gorgeous flowering trees in Delaware but lots of pollen!), but I'm feeling crummy for a different reason. In a case of very bad timing, it was time this week for me to go off the pill (I take a 90-day pill to keep my hormone levels steady) and get my period. It always makes all my CFS symptoms flare-up, so I'm back on the couch with sore throat and aches, plus massive headaches every afternoon and evening. Ugh - hormone hell. At least I know it will pass in a few days. Hope you enjoy the photos!
My allergies have finally improved a bit - most of the trees here are now past their blooming stage (gorgeous flowering trees in Delaware but lots of pollen!), but I'm feeling crummy for a different reason. In a case of very bad timing, it was time this week for me to go off the pill (I take a 90-day pill to keep my hormone levels steady) and get my period. It always makes all my CFS symptoms flare-up, so I'm back on the couch with sore throat and aches, plus massive headaches every afternoon and evening. Ugh - hormone hell. At least I know it will pass in a few days. Hope you enjoy the photos!
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