My 13-year old son is still very sick. We don't know what caused this crash, but it's been the most severe one he's had in a couple of years. He's missed 8 of the last 10 days of school. It's so hard to see your child suffer like this. On top of that, I'm having a terrible time getting his teachers to communicate with me about what work he's missing at school, even though they're supposed to send work home as part of his 504 Plan (an accommodation plan for kids with illnesses or disabilities). It's been very frustrating.
The one bright spot this week was a visit to see his pediatrician - his regular doctor, not the non-believer we were forced to see last week. How wonderful to have a doctor who not only believes in CFS but knows my sons very well and is always striving to learn more about CFS so she can help them.
Instead of the cursory check of ears, throat, and chest he got last week, Dr. Wonderful gave Jamie a thorough exam, asked in-depth questions, and reviewed his latest lab results and a recent visit to a specialist. She even gave him tips on how to lessen the effects of orthostatic intolerance while he's crashed, based on an article she's recently read. Wow. Even though she couldn't offer much immediate help (not much to do but wait it out), her acceptance, understanding, and support were a great comfort to us. She even asked how I've been feeling and how the anti-viral treatment is working. Most amazing of all, when we discussed Jamie's very low NK cell function in his last lab test, she admitted, "I really don't know much about NK cell function. How about if we find an immunologist at the local children's hospital who understands CFS and can help advise us on treatment?" Like I said, wow.
I've heard all the nightmare stories about doctors who are ignorant and dismissive of CFS - and I have run into some of them myself. I am so very grateful that my sons and I both have doctors who get it, who care about us, and are willing to learn more so they can help us. If you don't have a doctor like this yet, don't give up! I stumbled onto my own doctor by pure chance when I was searching for a diagnosis. There are good doctors out there, and it makes such a difference when you find one.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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Wednesday, January 30, 2008
Sunday, January 27, 2008
The Dark Side
After 28 days without a crash (28 days!!), I went down hard yesterday.This isn't one of those mysterious crashes; it was very predictable. I did a massive shopping trip to Target and Trader Joe's on Friday. I hadn't been there in a couple of months, and we were out of everything. I was on my feet for two hours, pushing overloaded carts through the stores and hefting big bags into the car and then into the house.
Even though I knew I would almost certainly crash, I was in good spirits when the telltale symptoms began on Friday night. This was expected, and I knew I have been unusually well this past month.
I felt truly horrible on Saturday and spent most of the day in bed. Then, sometime Saturday afternoon, the Dark Side took over. My usual sunny disposition deserted me, and I was overcome by feelings of despair and self-pity. Dark thoughts clouded my head: "Why me?", "I'm sick of my life being so difficult," "I hate living this way."
My kids, whose presence is usually comforting to me, were suddenly irritating to me. I yelled at them, adding Bad Mommy guilt to the cauldron of black emotions. I felt a desperate need to escape - from my life, from my family, from my own body.
Despite the fact that I know this kind of sudden depression is caused by a biochemical shift in brain hormones that often happens when I crash badly, it still has the power to completely overtake me when it hits.
I woke up this morning feeling a little better, emotionally if not physically, with the bright sunshine making last night's dark despair seem like a bad dream. I'm going to try very hard today to just rest and recover because I know that the Dark Side is still lurking, waiting for me to do too much and cross that invisible line again.
"Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying,
I will try again tomorrow."
Even though I knew I would almost certainly crash, I was in good spirits when the telltale symptoms began on Friday night. This was expected, and I knew I have been unusually well this past month.
I felt truly horrible on Saturday and spent most of the day in bed. Then, sometime Saturday afternoon, the Dark Side took over. My usual sunny disposition deserted me, and I was overcome by feelings of despair and self-pity. Dark thoughts clouded my head: "Why me?", "I'm sick of my life being so difficult," "I hate living this way."
My kids, whose presence is usually comforting to me, were suddenly irritating to me. I yelled at them, adding Bad Mommy guilt to the cauldron of black emotions. I felt a desperate need to escape - from my life, from my family, from my own body.
Despite the fact that I know this kind of sudden depression is caused by a biochemical shift in brain hormones that often happens when I crash badly, it still has the power to completely overtake me when it hits.
I woke up this morning feeling a little better, emotionally if not physically, with the bright sunshine making last night's dark despair seem like a bad dream. I'm going to try very hard today to just rest and recover because I know that the Dark Side is still lurking, waiting for me to do too much and cross that invisible line again.
"Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying,
I will try again tomorrow."
Monday, January 21, 2008
CFS in the Local News
We've gotten some nice local news coverage of CFS lately while the CDC & CFIDS Association's photo exhibit, Faces of CFS, has been in Philadelphia (about 30 minutes from where I live in Delaware).
Our own local Delaware newspaper kicked off the new year with a very good profile article on January 1st about a woman here who has CFS. It included mostly accurate facts (they messed up the name) from the CDC and from the CFIDS Association. The paper also printed my letter to the editor, thanking them for running the article and pointing out that CFS also affects kids and teens. (I waited too long to post this, so the article and letter are no longer online).
On Friday, January 11, NPR's Morning Edition ran a fairly good story about CFS on our local affiliate WHYY, including an interview with a local doctor who treats CFS. Again, mostly accurate, and it emphasized the seriousness of CFIDS (though they also got the name wrong, saying the D stood for deficiency). I tried to include a link, but it seems to have disappeared?
Here's another local radio program featuring CFS. I missed this one when it broadcast, but it's available online (page down to Special Features on the right side to listen).
A fellow CFIDS blogger was featured in a story about CFS on the local CBS news last week. Jennie did a great job in the piece.
At the same time, lots of major news outlets, including CBS News, have been covering the recent CDC study that showed women with CFS have low levels of cortisol. Good, solid science linked with CFS is always helpful in educating the public.
All of this news coverage has been great! We really seem to be entering a new era of taking CFS seriously. Misguided doctors and other people can't ignore all of these news stories. More, more!
Our own local Delaware newspaper kicked off the new year with a very good profile article on January 1st about a woman here who has CFS. It included mostly accurate facts (they messed up the name) from the CDC and from the CFIDS Association. The paper also printed my letter to the editor, thanking them for running the article and pointing out that CFS also affects kids and teens. (I waited too long to post this, so the article and letter are no longer online).
On Friday, January 11, NPR's Morning Edition ran a fairly good story about CFS on our local affiliate WHYY, including an interview with a local doctor who treats CFS. Again, mostly accurate, and it emphasized the seriousness of CFIDS (though they also got the name wrong, saying the D stood for deficiency). I tried to include a link, but it seems to have disappeared?
Here's another local radio program featuring CFS. I missed this one when it broadcast, but it's available online (page down to Special Features on the right side to listen).
A fellow CFIDS blogger was featured in a story about CFS on the local CBS news last week. Jennie did a great job in the piece.
At the same time, lots of major news outlets, including CBS News, have been covering the recent CDC study that showed women with CFS have low levels of cortisol. Good, solid science linked with CFS is always helpful in educating the public.
All of this news coverage has been great! We really seem to be entering a new era of taking CFS seriously. Misguided doctors and other people can't ignore all of these news stories. More, more!
Thursday, January 17, 2008
Doing My Part!
I got to set a CFS non-believer doctor straight this week, and I'm so proud!
My older son had bronchitis, so I had to take him to the doctor to get a prescription for antibiotics. There are 3 doctors in the pediatrician practice we go to. Our regular doc is fabulous and has learned a lot about CFS in order to help our two sons, but when you go for a sick visit, you just get whoever is available.
The doctor who came in the room happened to be one who I know doesn't get CFS. Another Mom I know (whose daughter has CFS) took her to see this doctor while trying to find a diagnosis. Mom said, "Do you think this might be Chronic Fatigue Syndrome?" and Dr. Non-believer brushed her off with, "Who isn't tired these days?" ouch.
So, I just happened to mention while Dr. Non-believer was examining my son that he has CFS which makes him extra-susceptible to bacterial infections. At first, she just gave me a non-committal, " uh-huh," but a few minutes later, she looked at me and said, "What you just said about CFS...has that been documented?" I saw my chance for a little education and jumped at it. I said yes and explained that CFS causes immune system dysfunction, including an imbalance of T-helper cells that makes the immune system under-react to bacterial infections. I added that most people with CFS also have low Natural Killer (NK) Cell function, and that Jamie's was recently measured and is very low.
I'm hoping that those few little facts will help her to think twice about dismissing CFS as "just feeling tired" and maybe even seek out recent information about it. Every little bit helps!
My older son had bronchitis, so I had to take him to the doctor to get a prescription for antibiotics. There are 3 doctors in the pediatrician practice we go to. Our regular doc is fabulous and has learned a lot about CFS in order to help our two sons, but when you go for a sick visit, you just get whoever is available.
The doctor who came in the room happened to be one who I know doesn't get CFS. Another Mom I know (whose daughter has CFS) took her to see this doctor while trying to find a diagnosis. Mom said, "Do you think this might be Chronic Fatigue Syndrome?" and Dr. Non-believer brushed her off with, "Who isn't tired these days?" ouch.
So, I just happened to mention while Dr. Non-believer was examining my son that he has CFS which makes him extra-susceptible to bacterial infections. At first, she just gave me a non-committal, " uh-huh," but a few minutes later, she looked at me and said, "What you just said about CFS...has that been documented?" I saw my chance for a little education and jumped at it. I said yes and explained that CFS causes immune system dysfunction, including an imbalance of T-helper cells that makes the immune system under-react to bacterial infections. I added that most people with CFS also have low Natural Killer (NK) Cell function, and that Jamie's was recently measured and is very low.
I'm hoping that those few little facts will help her to think twice about dismissing CFS as "just feeling tired" and maybe even seek out recent information about it. Every little bit helps!
Tuesday, January 15, 2008
Treatment Update
Hello, I'm here!
Sorry I fell into a black hole for awhile. With my grandfather's funeral, the holidays, and a severe crash that lasted for three weeks, I barely had the time and energy to get through each day for awhile. But I'm happy to say that with the new year came a new run of good health, and I've been doing well the past two weeks.
As always, it's hard to keep an accurate perception of things while in the midst of a crash. During the holidays, I was feeling pretty down, certain that none of the effort or expense of treatments this past year has had any effect at all. Lab tests taken in December showed little change, and my doctor in NYC sent me the results with a note that said, "About the same. Continue treatment." I was pretty bummed.
Once I started to feel better, I decided to take a more analytical approach (watch out, here's the engineer in me coming through again). I track how I feel each day and the amount of exertion and stress I had. I just use simple number ratings, from 1 to 5, that I jot in my journal at the end of the day (and, yes, I graph them!). So I let the numbers tell the story.
It turns out that, although I had some really great months this past year, the overall average was about the same as it has been for the past 6 years. That was kind of depressing, so I decided to look at my level of exertion. That graph went steadily up from January through the end of the year. I had a couple of bad crash months when I wasn't able to do a lot, but overall, I am able to be more active on most days than I was a year ago. This is exciting!
I also noticed that I did especially well during the three months that I took Naltrexone (which is supposed to help increase Natural Killer (NK) cell function). So I asked my doctor if I could try that again, and she agreed. She said many of her patients feel better on Naltrexone, even if the lab results don't show it. It might have been coincidental, but I'll try it again and see.
So, here's the basic summary of my treatments this past year:
Now, I'm heading outside to throw a football with my son.
Sorry I fell into a black hole for awhile. With my grandfather's funeral, the holidays, and a severe crash that lasted for three weeks, I barely had the time and energy to get through each day for awhile. But I'm happy to say that with the new year came a new run of good health, and I've been doing well the past two weeks.
As always, it's hard to keep an accurate perception of things while in the midst of a crash. During the holidays, I was feeling pretty down, certain that none of the effort or expense of treatments this past year has had any effect at all. Lab tests taken in December showed little change, and my doctor in NYC sent me the results with a note that said, "About the same. Continue treatment." I was pretty bummed.
Once I started to feel better, I decided to take a more analytical approach (watch out, here's the engineer in me coming through again). I track how I feel each day and the amount of exertion and stress I had. I just use simple number ratings, from 1 to 5, that I jot in my journal at the end of the day (and, yes, I graph them!). So I let the numbers tell the story.
It turns out that, although I had some really great months this past year, the overall average was about the same as it has been for the past 6 years. That was kind of depressing, so I decided to look at my level of exertion. That graph went steadily up from January through the end of the year. I had a couple of bad crash months when I wasn't able to do a lot, but overall, I am able to be more active on most days than I was a year ago. This is exciting!
I also noticed that I did especially well during the three months that I took Naltrexone (which is supposed to help increase Natural Killer (NK) cell function). So I asked my doctor if I could try that again, and she agreed. She said many of her patients feel better on Naltrexone, even if the lab results don't show it. It might have been coincidental, but I'll try it again and see.
So, here's the basic summary of my treatments this past year:
- I took a low dose of Valcyte for two months (Jan - Feb) but quit it because my white blood cell count dropped so low.
- I took Valtrex (sometimes 500 mg per day and sometimes 1000 mg) for 9 months and am still on it (downsides include the expense and sometimes GI problems).
- I took Naltrexone (3 mg per day) for 3 months (Aug - Oct) and felt pretty well, so I'm going to try another 3 months of it.
- The results? I still feel about the same on average, but I'm able to be more active. That means that I'm functioning at a higher level than a year ago. I guess I feel about the same because as I've improved I've automatically increased my activity level.
Now, I'm heading outside to throw a football with my son.