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?