I'm BORED.
My two boys have been home sick all week - Craig seemed to have the nasty virus that's been making the rounds here lately and Jamie was badly crashed. They both improved a bit today, but school was cancelled due to weather (a mere inch of snow!). So, I've had a full week of caring for sick kids round the clock - lots of cooking, doing dishes (one-handed because of my stitches), reading, and watching movies. We maxed out our DVD allotment from the library.
It's been impossible to get any real work done this week - too many interruptions and distractions (not to mention at least one kid saying, "I'm hungry," every time I sit down). I've done all that I could from my laptop in the family room: paid bills, sent invoices for work, written in my blogs.
Thank goodness for books. When Jamie (my 13-year old) gets sick, he reads non-stop. Between his crash two weeks ago and this week, he's read 10 books! Fortunately, we have a huge supply of new books because I review kids' books for Family Fun magazine. I also enjoy writing reviews of both kid and grown-up books for my book blog, so writing and reading reviews has helped to keep me entertained this week.
But now it's Friday, the end of a looong week of being stuck inside, and I feel restless and bored. On the bright side, feeling restless means I feel well enough to want to do lots of things. I've had an amazingly good two months. I'm checking into a few things to be sure I have my facts straight, but I'll post more about what's helped me so much next week.
Enjoy the weekend!
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.
Friday, February 22, 2008
Tuesday, February 19, 2008
One of those days (or weeks?)
You know one of those days where everything seems to go wrong? I seem to be having a week like that...and it's only Tuesday!
My Dad and his wife drove down for a visit this weekend. We had a very nice weekend together...until I sliced through my finger Sunday while preparing dinner. My Dad drove me to the local urgent care clinic, where 2 hours later, I ended up with a tetanus shot and 5 stitches in my index finger. While I was lying on the examining table, waiting for the 6 shots of lidocaine to take effect, I had a major Orthostatic Intolerance episode. I got lightheaded and could feel my face flush bright red. The nurse found me some pretzels (I asked for anything salty) and taught me a new trick - an ice pack applied to the back of the neck can reverse an OI episode. It worked pretty well, though I still crashed pretty badly later that night. Lots of stress (not to mention pain).
Today, both of my sons are home sick with fevers. I just hope it's not that nasty flu we've been hearing about on the news. That's one (of many) problems with CFS - you can never tell whether it's "just" a crash or a real illness.
That's not all. Our hamster is at the vet's right now undergoing exploratory dental surgery. He's had a hugely swollen lymph node near his right cheek for the past week. Fortunately, one of my best friends is a vet, and she's been valiantly trying to figure out what's wrong. Cancer is one possibility. Our whole family has been very upset. It might seem silly just for a hamster, but we all love him very much. So, the boys and I are watching movies and waiting to hear from the vet.
To top it off, my husband is out of town this week, so I'm on my own with sick kids, a hospitalized hamster, and an out-of-commission finger. I'm feeling OK now, though, so if I can just figure out how to take a shower without getting my stitches wet, I'll get through this week.
My Dad and his wife drove down for a visit this weekend. We had a very nice weekend together...until I sliced through my finger Sunday while preparing dinner. My Dad drove me to the local urgent care clinic, where 2 hours later, I ended up with a tetanus shot and 5 stitches in my index finger. While I was lying on the examining table, waiting for the 6 shots of lidocaine to take effect, I had a major Orthostatic Intolerance episode. I got lightheaded and could feel my face flush bright red. The nurse found me some pretzels (I asked for anything salty) and taught me a new trick - an ice pack applied to the back of the neck can reverse an OI episode. It worked pretty well, though I still crashed pretty badly later that night. Lots of stress (not to mention pain).
Today, both of my sons are home sick with fevers. I just hope it's not that nasty flu we've been hearing about on the news. That's one (of many) problems with CFS - you can never tell whether it's "just" a crash or a real illness.
That's not all. Our hamster is at the vet's right now undergoing exploratory dental surgery. He's had a hugely swollen lymph node near his right cheek for the past week. Fortunately, one of my best friends is a vet, and she's been valiantly trying to figure out what's wrong. Cancer is one possibility. Our whole family has been very upset. It might seem silly just for a hamster, but we all love him very much. So, the boys and I are watching movies and waiting to hear from the vet.
To top it off, my husband is out of town this week, so I'm on my own with sick kids, a hospitalized hamster, and an out-of-commission finger. I'm feeling OK now, though, so if I can just figure out how to take a shower without getting my stitches wet, I'll get through this week.
Monday, February 11, 2008
CFIDS and School - Resources
We've had a rough few weeks here, with at least one of our boys home sick almost every single day. Craig had a couple of minor crashes or maybe viruses (hard to tell) and bounced back quickly, but Jamie, our 13-year old, has really struggled. He recovered from a bout of bronchitis last month, felt good for a few days, then went into a very severe crash that lasted almost two weeks. He's been back in school for the past week, but his stamina is still lower than normal. We cancelled a weekend trip to Connecticut for my niece's and nephew's birthdays this weekend to give him some time to recover.
I was reminded once again, during Jamie's 9 days absent from school in January, that you have to be an advocate for your child with CFS, in order to get them the support they need at school. I battled for over a week to get Jamie's teachers just to send work home. Jamie even has a 504 plan (an accommodation plan backed by federal law) in place, but this kind of lengthy crash has become so rare for him that his teachers weren't used to dealing with it. Most of them are very kind and supportive, so they probably thought they were doing him a favor by not giving him work when he's sick. As we've explained again and again, though, it's better for him to know what's going on and work on a little at a time as he's able to, than to return to school and be overwhelmed by weeks' worth of work.
At the same time, I've also been trying to help another local Mom whose 11-year old daughter has CFS to get what she needs at school. Her daughter's school has been supportive, but they just don't understand CFS that well. They want her to commit to a regular part-time schedule, attending school all day on Tuesdays and Thursdays. Anyone who lives with CFS knows that's pretty much impossible. We all wish we could plan our crash days and well days like that, but the one thing you can count on with CFIDS is its unpredictability.
For anyone else trying to get the right support for his/her child, here are some excellent resources:
The best book for parents is The Parent's Guide to CFIDS by Dr. Bell, co-authored by Mary Robinson (see next item). This book does a fabulous job of explaining 504 plans and IEP plans and advising parents on how to work with their child's school. It was invaluable to us when Jamie first got sick.
Another resource that helped us get through those first difficult years is the Pediatric Network. It's for parents of kids with CFS, fibromyalgia, and OI. The website includes lots of informative articles, but the Forum is what we found most helpful. It's a message board with sections for both parents and kids/teens (registration is free). The advice and support of other parents that we found through the forum made a huge difference to us. Mary Robinson, co-author of the above book, is also a moderator on the pediatric network.
The CFIDS Association has some excellent resources on its Youth Home Page. There are some great articles here. The first two articles on the Education page were especially helpful to us: Reach Out to School Nurses and Tips for Teachers of Young People with CFIDS. We've handed out many copies of both of these.
And to see more of my blog entries about our own experiences with CFS and school, just click on the school label at the end of this entry.
Jamie just got home from school and says he's feeling much better today, so let's hope this is the beginning of a trend!
I was reminded once again, during Jamie's 9 days absent from school in January, that you have to be an advocate for your child with CFS, in order to get them the support they need at school. I battled for over a week to get Jamie's teachers just to send work home. Jamie even has a 504 plan (an accommodation plan backed by federal law) in place, but this kind of lengthy crash has become so rare for him that his teachers weren't used to dealing with it. Most of them are very kind and supportive, so they probably thought they were doing him a favor by not giving him work when he's sick. As we've explained again and again, though, it's better for him to know what's going on and work on a little at a time as he's able to, than to return to school and be overwhelmed by weeks' worth of work.
At the same time, I've also been trying to help another local Mom whose 11-year old daughter has CFS to get what she needs at school. Her daughter's school has been supportive, but they just don't understand CFS that well. They want her to commit to a regular part-time schedule, attending school all day on Tuesdays and Thursdays. Anyone who lives with CFS knows that's pretty much impossible. We all wish we could plan our crash days and well days like that, but the one thing you can count on with CFIDS is its unpredictability.
For anyone else trying to get the right support for his/her child, here are some excellent resources:
The best book for parents is The Parent's Guide to CFIDS by Dr. Bell, co-authored by Mary Robinson (see next item). This book does a fabulous job of explaining 504 plans and IEP plans and advising parents on how to work with their child's school. It was invaluable to us when Jamie first got sick.
Another resource that helped us get through those first difficult years is the Pediatric Network. It's for parents of kids with CFS, fibromyalgia, and OI. The website includes lots of informative articles, but the Forum is what we found most helpful. It's a message board with sections for both parents and kids/teens (registration is free). The advice and support of other parents that we found through the forum made a huge difference to us. Mary Robinson, co-author of the above book, is also a moderator on the pediatric network.
The CFIDS Association has some excellent resources on its Youth Home Page. There are some great articles here. The first two articles on the Education page were especially helpful to us: Reach Out to School Nurses and Tips for Teachers of Young People with CFIDS. We've handed out many copies of both of these.
And to see more of my blog entries about our own experiences with CFS and school, just click on the school label at the end of this entry.
Jamie just got home from school and says he's feeling much better today, so let's hope this is the beginning of a trend!
Wednesday, January 30, 2008
A Doctor Who Gets It...Priceless
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.
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.
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.
Monday, November 26, 2007
CFS and Family
We're back home after a very successful 5-day trip back home to Rochester for Thanksgiving. We have a lot of extended family there, plus many of my old friends, so our visits are usually hectic and packed full. This trip was no exception, but I fared much better than usual. Of course, I had to be careful of what I ate, how much time I spent on my feet, and I stuck to my afternoon nap routine...but I made it through the whole trip without a single day of feeling bad and actually enjoyed myself! Our boys were very active, running around with their cousins all weekend, but they, too, made it through without crashing.
This was our third trip to Rochester (a 7-8 hour drive) in the past month. We went in mid-October to visit my grandfather in the hospital. He died while we were there, and we returned a few days later for the funeral. So, it's been a very challenging and tiring time for all of us.
I was pleasantly surprised, though, to find that some of my family members have finally begun to accept my illness. Although a few family members have been supportive right from the start, many of my family have responded for the past five years by just pretending that nothing was wrong. This has been deeply hurtful - to discover that the people I love the most weren't there for me when I needed them most. It has also made it difficult for me to spend time with my family because they wouldn't acknowledge my limitations or the changes I've had to make in my life.
All of this came to a head on a family vacation several years ago when I went into the worst crash I've ever had and found that no one would help me. They all just acted like everything was OK, even when I collapsed on the floor at one point. Though I was very hurt, I eventually came to realize that they were acting out of a deep sense of denial. My family does love me. It's just that some of them love me so much that they could not accept that I was now so debilitated. Perhaps the common misunderstandings of CFS played a role as well. This was a very difficult realization for me because my own attitude has always been to face things head on, learn as much as possible, and deal with everything in an upfront way.
So, after these many difficult years, I was pleasantly surprised to find some amazing changes during my recent visit to see my grandfather in the hospital. My uncle - one of those who previously pretended nothing was wrong - kept checking to see if I was OK, encouraging me to rest, and offering to help out so I wouldn't overdo. This meant so much to me. It's likely that my mother had something to do with this, since she also experienced a big turn-around in attitude in the past year, but whatever the reason, I was relieved to be able to just relax and be myself again.
I still have a couple of family members who rarely acknowledge my illness and tend to make light of its effects, but they're now the exceptions. A few years ago, I was at the point where I dreaded any family gatherings. I'm happy to say that I am now able to look forward to seeing my family again, and I truly enjoyed this hectic holiday weekend.
This was our third trip to Rochester (a 7-8 hour drive) in the past month. We went in mid-October to visit my grandfather in the hospital. He died while we were there, and we returned a few days later for the funeral. So, it's been a very challenging and tiring time for all of us.
I was pleasantly surprised, though, to find that some of my family members have finally begun to accept my illness. Although a few family members have been supportive right from the start, many of my family have responded for the past five years by just pretending that nothing was wrong. This has been deeply hurtful - to discover that the people I love the most weren't there for me when I needed them most. It has also made it difficult for me to spend time with my family because they wouldn't acknowledge my limitations or the changes I've had to make in my life.
All of this came to a head on a family vacation several years ago when I went into the worst crash I've ever had and found that no one would help me. They all just acted like everything was OK, even when I collapsed on the floor at one point. Though I was very hurt, I eventually came to realize that they were acting out of a deep sense of denial. My family does love me. It's just that some of them love me so much that they could not accept that I was now so debilitated. Perhaps the common misunderstandings of CFS played a role as well. This was a very difficult realization for me because my own attitude has always been to face things head on, learn as much as possible, and deal with everything in an upfront way.
So, after these many difficult years, I was pleasantly surprised to find some amazing changes during my recent visit to see my grandfather in the hospital. My uncle - one of those who previously pretended nothing was wrong - kept checking to see if I was OK, encouraging me to rest, and offering to help out so I wouldn't overdo. This meant so much to me. It's likely that my mother had something to do with this, since she also experienced a big turn-around in attitude in the past year, but whatever the reason, I was relieved to be able to just relax and be myself again.
I still have a couple of family members who rarely acknowledge my illness and tend to make light of its effects, but they're now the exceptions. A few years ago, I was at the point where I dreaded any family gatherings. I'm happy to say that I am now able to look forward to seeing my family again, and I truly enjoyed this hectic holiday weekend.
Thursday, November 15, 2007
Crash!
Whew, it's been a long dry spell for my blog. I've been sick for the past week and a half. I guess I picked up whatever my oldest son had Halloween week. I was badly crashed for about a week. My crashes lately only last a day or two, so this one seemed to be triggered by a virus - that always knocks me out.
I felt much better on Sunday, then much worse again by Monday afternoon. That usually means a bacterial infection, and, sure enough, my doctor said I had bronchitis and started me on antibiotics. She said there's been a really nasty form of bronchitis going around lately, so she was worried about me. Fortunately, though, the antibiotics seem to be doing the trick.
I was well enough by today to even go on a much-delayed shopping trip to Target and Trader Joe's with my friend. She and I were both thrilled that I was able to manage it! Everyone needs a friend like her. When I was unable to go along to dinner and our book group earlier this week, she told me it wouldn't be the same without me. I was pretty bummed to miss my book group and appreciated her kind thoughts.
So, I'm glad to be back to my own kind of normal. It was so frustrating to be unable to do anything at all for days at a time. And now the holiday season is approaching fast!
I felt much better on Sunday, then much worse again by Monday afternoon. That usually means a bacterial infection, and, sure enough, my doctor said I had bronchitis and started me on antibiotics. She said there's been a really nasty form of bronchitis going around lately, so she was worried about me. Fortunately, though, the antibiotics seem to be doing the trick.
I was well enough by today to even go on a much-delayed shopping trip to Target and Trader Joe's with my friend. She and I were both thrilled that I was able to manage it! Everyone needs a friend like her. When I was unable to go along to dinner and our book group earlier this week, she told me it wouldn't be the same without me. I was pretty bummed to miss my book group and appreciated her kind thoughts.
So, I'm glad to be back to my own kind of normal. It was so frustrating to be unable to do anything at all for days at a time. And now the holiday season is approaching fast!
Friday, November 02, 2007
Happy Halloween!
We've had an exhausting, whirlwind of unexpected activity these past two weeks, due to some family emergencies (more on that another time). Jamie had bronchitis earlier this week, but, by some miracle, we were all well enough to enjoy Halloween on Wednesday. It's one of our favorite days all year!
As is our tradition, we all dressed up - why should the kids have all the fun? This year, our younger son, Craig, wanted to be Elvis. He's a big Elvis fan and insisted we visit Graceland this summer when we went through Memphis. Craig wanted to be the younger Elvis, in the black leather outfit he wore for his comeback concert after his stint in the army. So, my
husband, Ken, decided to be the older, Vegas-style Elvis. Here's big and little Elvis posing together before trick-or-treating. I dressed up as an Elvis fan from the 50's. Jamie and his friend decided to go as old-time Arabian knights (we watched Lawrence of Arabia recently!).I was worried about Jamie, but he handled the evening well. Both boys even made it to school the next day. I went along trick-or-treating for the entire neighborhood with Ken and the boys for the first time in many years...and paid for it the next day. I felt like I had run a marathon, with sore muscles and plenty of aches and exhaustion. I bounced back quickly, though, and felt very good today. Amazing! I think that's one of the effects of the Valtrex treatment. I still crash, but my crashes tend to be much shorter lately.
I hope everyone else enjoyed Halloween as much as we did!
Wednesday, October 10, 2007
Support CFS Research
I just wanted to take a moment to tell you about a very easy and inexpensive way to support CFS research. I'm sure many of you are in the same boat as my family - we want to contribute as much as we can to CFS research, but our income is limited (since I can only work part-time), and our medical expenses keep growing.
There's a website called iGive.com. It's basically an internet shopping portal. You sign up - for free - and select which charity you want to help (I choose the CFIDS Association of America). Then visit the site first whenever you do any online shopping. You connect to the online store of your choice through iGive. There are hundreds of stores, including Lands' End, iTunes, Staples, Toys R Us - just about any online store you can think of. Each store contributes some percentage of your purchase to your charity (usually between 1% - 5%).
I signed up a few years ago but kept forgetting to use it. I recently added it to my Toolbar as a reminder and have gotten into the habit of going there first now. This is especially convenient for those of us living with CFS, since we often don't have the energy for walking through stores anyway. iGive also alerts you to special deals from merchants, like free shipping or coupons.
So sign up today, and tell your friends and family about it, too!
There's a website called iGive.com. It's basically an internet shopping portal. You sign up - for free - and select which charity you want to help (I choose the CFIDS Association of America). Then visit the site first whenever you do any online shopping. You connect to the online store of your choice through iGive. There are hundreds of stores, including Lands' End, iTunes, Staples, Toys R Us - just about any online store you can think of. Each store contributes some percentage of your purchase to your charity (usually between 1% - 5%).
I signed up a few years ago but kept forgetting to use it. I recently added it to my Toolbar as a reminder and have gotten into the habit of going there first now. This is especially convenient for those of us living with CFS, since we often don't have the energy for walking through stores anyway. iGive also alerts you to special deals from merchants, like free shipping or coupons.
So sign up today, and tell your friends and family about it, too!
Wednesday, October 03, 2007
CFS In The News
While it's good to see CFS showing up more often in the mainstream media, it's also disheartening to see silly-sounding, over-simplified reports of miracle cures, like the one circulating this week about dark chocolate and CFS.
Hey, I'm always thrilled to hear any news about dark chocolate being good for me, but this USA Today blurb trivializes CFIDS and makes it sound like we can solve all of our problems with a few squares of chocolate. The BBC did a better job of covering the full story and emphasizing the seriousness of CFS/ME. The UK's ME Association provides a more complete explanation of the study results.
Fortunately, the news a couple of weeks ago about the link between CFS and enteroviruses received much broader and more complete media coverage. I subscribe to Yahoo's clipping service and saw dozens of news articles from tv, radio, and newspapers from across the country. This kind of report of hard science linking CFS to known viruses is the stuff that will help the medical community and the general public to better understand and respect CFS as the serious illness that it is.
Keep 'em coming!
In the meantime, it can't hurt to continue my nightly ritual of mint tea and dark chocolate.
Hey, I'm always thrilled to hear any news about dark chocolate being good for me, but this USA Today blurb trivializes CFIDS and makes it sound like we can solve all of our problems with a few squares of chocolate. The BBC did a better job of covering the full story and emphasizing the seriousness of CFS/ME. The UK's ME Association provides a more complete explanation of the study results.
Fortunately, the news a couple of weeks ago about the link between CFS and enteroviruses received much broader and more complete media coverage. I subscribe to Yahoo's clipping service and saw dozens of news articles from tv, radio, and newspapers from across the country. This kind of report of hard science linking CFS to known viruses is the stuff that will help the medical community and the general public to better understand and respect CFS as the serious illness that it is.
Keep 'em coming!
In the meantime, it can't hurt to continue my nightly ritual of mint tea and dark chocolate.
Wednesday, September 26, 2007
Recovering
It's been a very long week. I've spent much of the past 9 days in bed, but I seem to finally be coming out of it. I'm still not sure how much of this has been a virus and how much has been a reaction to the Valtrex, but this was certainly no ordinary crash.
I've had heavy congestion in addition to my normal crash symptoms, so I suspect I caught one of the viruses that's been going around among my son's friends. In fact, my son is home sick today - congested and totally worn out - so he's probably got the same thing now.
You would think that being on a strong anti-viral would protect me against viruses, but I guess it doesn't work that way! From what I understand, anti-virals are very specific (as opposed to some of the broad spectrum antibiotics). Being on anti-virals can also make you more susceptible to bacterial infections. I started on Zithromax yesterday for what seems to be a sinus infection, after my congestion got worse again.
The worst part about this latest crash was a severe bout of depression this weekend. It was obvious to me that it was a biochemical shift - it happened so suddenly and for no apparent reason. In fact, I was feeling a bit better physically when it hit me. Suddenly I was turning trivial things into terrible tragedies, seeing problems where none existed, and sobbing uncontrollably. Others on Valtrex and Valcyte have described this same sort of sudden, severe mood swings. Knowing what's causing it doesn't make it much easier to deal with - for either me or my husband. We were both relieved when it passed.
I'm determined to recover by tomorrow so that I can attend an annual board meeting. It's a once a year thing that amounts to about 1/6 of my annual income, so I don't want to miss it! Fortunately, it's just a short train ride to New Jersey for me and a half-day meeting. I'm feeling much better today, so I think I'll be able to make it tomorrow. Now I just hope my son gets through this quicker than I did.
I've had heavy congestion in addition to my normal crash symptoms, so I suspect I caught one of the viruses that's been going around among my son's friends. In fact, my son is home sick today - congested and totally worn out - so he's probably got the same thing now.
You would think that being on a strong anti-viral would protect me against viruses, but I guess it doesn't work that way! From what I understand, anti-virals are very specific (as opposed to some of the broad spectrum antibiotics). Being on anti-virals can also make you more susceptible to bacterial infections. I started on Zithromax yesterday for what seems to be a sinus infection, after my congestion got worse again.
The worst part about this latest crash was a severe bout of depression this weekend. It was obvious to me that it was a biochemical shift - it happened so suddenly and for no apparent reason. In fact, I was feeling a bit better physically when it hit me. Suddenly I was turning trivial things into terrible tragedies, seeing problems where none existed, and sobbing uncontrollably. Others on Valtrex and Valcyte have described this same sort of sudden, severe mood swings. Knowing what's causing it doesn't make it much easier to deal with - for either me or my husband. We were both relieved when it passed.
I'm determined to recover by tomorrow so that I can attend an annual board meeting. It's a once a year thing that amounts to about 1/6 of my annual income, so I don't want to miss it! Fortunately, it's just a short train ride to New Jersey for me and a half-day meeting. I'm feeling much better today, so I think I'll be able to make it tomorrow. Now I just hope my son gets through this quicker than I did.
Wednesday, September 19, 2007
Surrender
I've been badly crashed since Monday evening this week. Maybe it's because I was too active this weekend or stayed too long at a festival with my family Saturday night. Maybe it's a response to finally getting back to my full dose of Valtrex (insurance mess finally resolved). Maybe it's because my sons' best friend has a cold and his virus is affecting me.
It doesn't really matter why, I guess. The fact is that this is a full-out, can't-ignore-it crash. I knew Monday night when my throat hurt so horribly and I felt achy all over.
It took me several years to learn this lesson, but I know when my symptoms get this bad that I have to give up, give in, and surrender completely. I've spent the past two days almost entirely in bed, rather than trying to get a few things done, as I might with milder symptoms. I've learned the hard way that if I keep pushing when it's this bad, it will only last longer and get worse.
There's no way out of a severe crash except through it. Back to the couch...
It doesn't really matter why, I guess. The fact is that this is a full-out, can't-ignore-it crash. I knew Monday night when my throat hurt so horribly and I felt achy all over.
It took me several years to learn this lesson, but I know when my symptoms get this bad that I have to give up, give in, and surrender completely. I've spent the past two days almost entirely in bed, rather than trying to get a few things done, as I might with milder symptoms. I've learned the hard way that if I keep pushing when it's this bad, it will only last longer and get worse.
There's no way out of a severe crash except through it. Back to the couch...
Thursday, September 13, 2007
Kids and CFS: Update
It's been a long time since I've written here about my two boys and their CFS. We have two sons, ages 9 and 13, who've both had CFS for several years now (if you want to read more about their history, diagnoses, and treatment, click on the "kids and CFIDS" label at the end of this blog to see all of my blogs about them).
Overall, both boys are doing quite well now. We're enormously grateful to Dr. Bell, Dr. Rowe, and our own pediatrician for their help over the past few years. Both of our boys had dramatic improvements with Florinef treatment for their Orthostatic Intolerance (OI). If you have a child or teen with CFS, you must learn about OI (thought to affect over 90% of people with CFS); many kids respond very well to treatment, as our boys have done.
Jamie (our 13-year old) has just bounced back from a pretty severe 3-day crash. No big surprise - we let him go away for the weekend with his friend's family - three of his closest friends in the pool and the ocean for two full days. A crash was almost certain, but sometimes you just have to go ahead and let them have fun and suffer the consequences. I asked him last night, while he was still feeling terrible, if he would do it all again, knowing how bad he'd crash. He grinned widely and said, "Definitely. It was awesome!"
Jamie still seems to be suffering from the effects of his Lyme infection in April. The infection triggered a slight worsening of his CFS symptoms, mainly reduced stamina. Lyme is a known trigger for CFS, so this isn't surprising. Just to be on the safe side, his pediatrician and a specialist are examining and testing him to be sure there's nothing else going on. Overall, though, he's doing well, still able to be in school full-time, in band, and even playing soccer. What a change from two years ago, when he was bed-ridden almost 50% of the time!
Craig, our 9-year old, started Florinef in April, with the same dramatic improvement we saw with Jamie previously. Craig was home sick this Monday, after an exertion-filled weekend of soccer, swimming, and golf, but by Tuesday morning he was feeling better and back to school. That was his first crash day since April - amazing! Craig also had adenoid surgery this summer because he struggles with chronic sinus infections. This is his bad allergy season, and he's been congested the past few weeks, but so far, no sinus infections.
So, we're still dealing with occasional crashes and school absences, but compared to years past, life is good.
Overall, both boys are doing quite well now. We're enormously grateful to Dr. Bell, Dr. Rowe, and our own pediatrician for their help over the past few years. Both of our boys had dramatic improvements with Florinef treatment for their Orthostatic Intolerance (OI). If you have a child or teen with CFS, you must learn about OI (thought to affect over 90% of people with CFS); many kids respond very well to treatment, as our boys have done.
Jamie (our 13-year old) has just bounced back from a pretty severe 3-day crash. No big surprise - we let him go away for the weekend with his friend's family - three of his closest friends in the pool and the ocean for two full days. A crash was almost certain, but sometimes you just have to go ahead and let them have fun and suffer the consequences. I asked him last night, while he was still feeling terrible, if he would do it all again, knowing how bad he'd crash. He grinned widely and said, "Definitely. It was awesome!"
Jamie still seems to be suffering from the effects of his Lyme infection in April. The infection triggered a slight worsening of his CFS symptoms, mainly reduced stamina. Lyme is a known trigger for CFS, so this isn't surprising. Just to be on the safe side, his pediatrician and a specialist are examining and testing him to be sure there's nothing else going on. Overall, though, he's doing well, still able to be in school full-time, in band, and even playing soccer. What a change from two years ago, when he was bed-ridden almost 50% of the time!
Craig, our 9-year old, started Florinef in April, with the same dramatic improvement we saw with Jamie previously. Craig was home sick this Monday, after an exertion-filled weekend of soccer, swimming, and golf, but by Tuesday morning he was feeling better and back to school. That was his first crash day since April - amazing! Craig also had adenoid surgery this summer because he struggles with chronic sinus infections. This is his bad allergy season, and he's been congested the past few weeks, but so far, no sinus infections.
So, we're still dealing with occasional crashes and school absences, but compared to years past, life is good.
Wednesday, August 29, 2007
Back to School
My two boys returned to school on Monday. This is both good and bad for me. Of course, I enjoy their company, and we did a lot of fun things this summer. And after only three days, the early mornings are already killing me! Soon, our evenings will be filled with soccer practice and hours of homework. I do enjoy those relaxed summer evenings.
On the other hand, I am enjoying my very quiet house! I really didn't do much writing at all this summer, so I'm looking forward to getting back to my working routines. So far this week, it's mostly just clearing off my desk, going through my e-mail, and trying to sort through the stacks of back-to-school paperwork.
I've been feeling very good this past week. I was even able to enjoy a day hiking at a local creek with my friend and our kids on Friday. It's so hard to figure out why I'm feeling good, though. As I mentioned last week, a mix-up with my insurance company forced me to cut back to just one Valtrex per day temporarily. Is that why I'm feeling good? If so, what's going to happen when I go back to the full dose of two Valtrex per day? Do I need the higher dose to prevent drug resistant viruses? Or maybe the timing is just coincidental, and I've reached the end of my "herx" reaction (a temporary worsening) and can expect to keep improving?
There's another option, too. About 3 weeks ago, I started Naltrexone, a medication that's supposed to boost my Natural Killer (NK) cell function. Maybe that's starting to work.
So many questions and so few answers! All of this is so new to everyone, including the doctors. I guess I just need to wait and see. Hopefully, my higher stamina will continue.
On the other hand, I am enjoying my very quiet house! I really didn't do much writing at all this summer, so I'm looking forward to getting back to my working routines. So far this week, it's mostly just clearing off my desk, going through my e-mail, and trying to sort through the stacks of back-to-school paperwork.
I've been feeling very good this past week. I was even able to enjoy a day hiking at a local creek with my friend and our kids on Friday. It's so hard to figure out why I'm feeling good, though. As I mentioned last week, a mix-up with my insurance company forced me to cut back to just one Valtrex per day temporarily. Is that why I'm feeling good? If so, what's going to happen when I go back to the full dose of two Valtrex per day? Do I need the higher dose to prevent drug resistant viruses? Or maybe the timing is just coincidental, and I've reached the end of my "herx" reaction (a temporary worsening) and can expect to keep improving?
There's another option, too. About 3 weeks ago, I started Naltrexone, a medication that's supposed to boost my Natural Killer (NK) cell function. Maybe that's starting to work.
So many questions and so few answers! All of this is so new to everyone, including the doctors. I guess I just need to wait and see. Hopefully, my higher stamina will continue.
Monday, August 20, 2007
Insurance Woes
I've gotten so far behind on blogging lately! It's the busy season for me, summer, with my kids home from school. We return to our normal routine next week when school starts, and then I'll have more time to write.
The past few weeks have been filled with one health insurance mess after another, mostly to do with our prescription drug coverage, which seems to shrink daily. It's so frustrating!
First, I stopped by the drugstore to pick up one of my allergy medications. It's a generic 12-hour decongestant/guaifenesin combination that I've taken every day for the past 8 years or so. The pharmacy clerk told me my insurance had stopped covering this medication, and it would cost me $100 (with insurance, it's $20). The insurance company never contacted me to let me know our coverage had changed. Phone calls got me nowhere - they couldn't tell me why it was no longer covered or what I could get as an alternative.
To make matters worse, it turned out that they are no longer covering any medications in this class. Both my younger son and I take two different varieties of this medication to help control our allergy and sinus symptoms. Since starting on these, my sinus headaches have almost completely disappeared, and Craig made it through last spring without a single sinus infection.
Then, weeks after sending my new Valtrex prescription to our mail-order pharmacy, I received a letter in return that they couldn't fill it because it was "beyond my limit." I guess they had a problem with the higher dose? Who knows. Anyway, I was in a panic, so I e-mailed Dr. Levine and begged her to call the insurance company and plead my case. She was understandably reluctant to get involved in a long battle, but she finally agreed to give it a try. After multiple phone calls and faxes, Medco finally agreed to fill the new prescription, but said they could not send it to me until August 30. No idea why? So, I had to cut back to just one Valtrex a day to make them last until the end of the month.
Meanwhile, I'm struggling to find a new, low-cost way to get the decongestants for Craig and I. I guess we'll have to pay for them out of pocket, so I'm looking for the lowest prices. So far, drugstore.com seems to be the best option. I'd appreciate any recommendations from other people who have to pay for their own medications. As frustrated and fed-up as I am with our prescription insurance, I also have a new appreciation for people who don't have any insurance at all. I can't imagine how difficult that must be. Any advice on low-cost prescriptions is welcome!
The past few weeks have been filled with one health insurance mess after another, mostly to do with our prescription drug coverage, which seems to shrink daily. It's so frustrating!
First, I stopped by the drugstore to pick up one of my allergy medications. It's a generic 12-hour decongestant/guaifenesin combination that I've taken every day for the past 8 years or so. The pharmacy clerk told me my insurance had stopped covering this medication, and it would cost me $100 (with insurance, it's $20). The insurance company never contacted me to let me know our coverage had changed. Phone calls got me nowhere - they couldn't tell me why it was no longer covered or what I could get as an alternative.
To make matters worse, it turned out that they are no longer covering any medications in this class. Both my younger son and I take two different varieties of this medication to help control our allergy and sinus symptoms. Since starting on these, my sinus headaches have almost completely disappeared, and Craig made it through last spring without a single sinus infection.
Then, weeks after sending my new Valtrex prescription to our mail-order pharmacy, I received a letter in return that they couldn't fill it because it was "beyond my limit." I guess they had a problem with the higher dose? Who knows. Anyway, I was in a panic, so I e-mailed Dr. Levine and begged her to call the insurance company and plead my case. She was understandably reluctant to get involved in a long battle, but she finally agreed to give it a try. After multiple phone calls and faxes, Medco finally agreed to fill the new prescription, but said they could not send it to me until August 30. No idea why? So, I had to cut back to just one Valtrex a day to make them last until the end of the month.
Meanwhile, I'm struggling to find a new, low-cost way to get the decongestants for Craig and I. I guess we'll have to pay for them out of pocket, so I'm looking for the lowest prices. So far, drugstore.com seems to be the best option. I'd appreciate any recommendations from other people who have to pay for their own medications. As frustrated and fed-up as I am with our prescription insurance, I also have a new appreciation for people who don't have any insurance at all. I can't imagine how difficult that must be. Any advice on low-cost prescriptions is welcome!
Tuesday, July 31, 2007
CFS and Valcyte
Over the past few months, I've received dozens of e-mails from all over the world, asking me about Valcyte. I've gotten the impression that most of these people have read just one of my old blog entries, from this winter when I briefly tried Valcyte. I was curious about this onslaught of questions, so I tried typing "CFS" and "Valcyte" into Yahoo and guess what? One of my blog entries from March was the very first search result! I'm certainly no expert on Valcyte with my limited experience, so I thought it was time to supply some updated information and references. Let's hope this entry takes the place of that old one in the search engines!
For starters, CFS has long been thought to have some connection with a handful of viruses. Research in the past few years has proven this connection. It has been confirmed now that about 12% of the population that catches certain infections goes on to develop CFS. Mononucleosis (often caused by the Epstein-Barr virus and known sometimes as glandular fever) and Lyme disease are two of these infections known to trigger CFS. Additional research has shown that some of us are genetically predisposed to develop CFS (lucky us).
Dr. Bell has an excellent article that summarizes the CFS viral connection.
More recently, the entire CFS community was astounded by the results of a study using Valcyte to treat CFS. Dr. Jose Montoya of Stanford University treated 25 of his worst CFS patients with Valcyte and, amazingly, 23 of them improved significantly (it even sounds like some of them are almost completely recovered). Dr. Montoya is now conducting a full placebo-controlled trial of Valcyte for another 100 CFS patients. Some important facts to note about these studies:
Here are some references for more information:
Dr. Podell, in Somerset, NJ, is also treating CFS patients with Valcyte. He's written an excellent summary of CFS and Valcyte, including many links to additional resources as well as links to Dr. Montoya's information.
Dr. Martin Lerner, in Michigan, has been treating CFS patients with a variety of anti-viral medications, including Valcyte, Valtrex, and Famvir, for several years. His website includes detailed information on his trials and treatments.
The HHV-6 Foundation has some excellent information on HHV-6 infection in CFS.
There is more good information at the website for Viral Induced CNS Dysfunction, including an excellent description about testing for EBV and HHV-6.
The CFS Phoenix Newsletter, a wonderful resource for keeping up-to-date on the latest in CFS research, has a detailed article on the role of HHV-6 in CFS.
Finally, if you want to hear about other people's experiences with Valcyte and other anti-virals, check out the message boards at ProHealth Immune Support. Registration is free, and there are many message threads on these topics. Just click on Message Boards and take a moment to register.
I hope that these references help those of you interested in learning more about treating CFS with anti-virals like Valcyte. These are the websites that I've turned to in the past 6 months. As for myself, I'll continue to write here at my blog about my own experiences with Valtrex.
For starters, CFS has long been thought to have some connection with a handful of viruses. Research in the past few years has proven this connection. It has been confirmed now that about 12% of the population that catches certain infections goes on to develop CFS. Mononucleosis (often caused by the Epstein-Barr virus and known sometimes as glandular fever) and Lyme disease are two of these infections known to trigger CFS. Additional research has shown that some of us are genetically predisposed to develop CFS (lucky us).
Dr. Bell has an excellent article that summarizes the CFS viral connection.
More recently, the entire CFS community was astounded by the results of a study using Valcyte to treat CFS. Dr. Jose Montoya of Stanford University treated 25 of his worst CFS patients with Valcyte and, amazingly, 23 of them improved significantly (it even sounds like some of them are almost completely recovered). Dr. Montoya is now conducting a full placebo-controlled trial of Valcyte for another 100 CFS patients. Some important facts to note about these studies:
- Patients who improved had abrupt-onset CFS and had significantly high levels of Epstein-Barr virus (EBV) and Human Herpes Virus-6 (HHV-6) in their blood.
- Most, if not all, patients who improved first experienced a severe worsening of their symptoms that lasted from a few weeks to many months.
- CFS patients were treated with Valcyte for a minimum of 6 months, some for much longer.
- Valcyte is a fairly toxic medication, with some serious risks associated with it.
Here are some references for more information:
Dr. Podell, in Somerset, NJ, is also treating CFS patients with Valcyte. He's written an excellent summary of CFS and Valcyte, including many links to additional resources as well as links to Dr. Montoya's information.
Dr. Martin Lerner, in Michigan, has been treating CFS patients with a variety of anti-viral medications, including Valcyte, Valtrex, and Famvir, for several years. His website includes detailed information on his trials and treatments.
The HHV-6 Foundation has some excellent information on HHV-6 infection in CFS.
There is more good information at the website for Viral Induced CNS Dysfunction, including an excellent description about testing for EBV and HHV-6.
The CFS Phoenix Newsletter, a wonderful resource for keeping up-to-date on the latest in CFS research, has a detailed article on the role of HHV-6 in CFS.
Finally, if you want to hear about other people's experiences with Valcyte and other anti-virals, check out the message boards at ProHealth Immune Support. Registration is free, and there are many message threads on these topics. Just click on Message Boards and take a moment to register.
I hope that these references help those of you interested in learning more about treating CFS with anti-virals like Valcyte. These are the websites that I've turned to in the past 6 months. As for myself, I'll continue to write here at my blog about my own experiences with Valtrex.
Wednesday, July 25, 2007
Update on my anti-viral treatment
Sorry to be so silent lately. I've been very, very sick. I've probably spent less than 15 minutes total on the computer in the past week, just to quickly check for urgent e-mails. My current rough state might be good news, though.
Two weeks ago, I had a follow-up phone consultation with Dr. Levine. In case you're new to my blog, she's the doctor who tested me for various viruses and for immune system function back in March. She found that I had higher than normal levels of HHV-6 (though my EBV and CMV levels were normal), and we decided I would try Valtrex, an anti-viral medication that works against HHV-6 but is much less toxic than Valcyte (which is effective against both HHV-6 and EBV).
So, I've been taking a low dose (500 mg/day) of Valtrex for the past four months. I have had some mild improvements during that time. The improvement has been subtle, difficult to notice on a day-to-day basis, but slow and steady when I look back at my records (I note how I feel each day, on a 1 to 5 scale, on a calendar). Also, both my husband and my mother commented to me recently that I seemed "more like myself" lately.
When I spoke to the doctor two weeks ago, we decided that I would try increasing the dose since the Valtrex seems to be working and I'm tolerating it OK. So, I doubled the dose to 1000 mg/day. Ever since then, I've had severe CFS symptoms almost constantly - sore throat, aches, exhaustion, sleep dysfunction - all my "normal" symptoms but as bad as my worst days every day with very low stamina. I've spent most of the past week in bed or on the couch (thankfully, my kids have been with their grandparents this week).
The good news (I hope) is that this characteristic worsening of symptoms on an anti-viral medication is supposed to be a good sign. Everyone who's taken Valcyte for CFS has reported the same sort of initial reaction. The theory is that this is a "herx" reaction, a temporary worsening caused by the drug killing off lots of virus in cells and tissues that then floods the bloodstream, triggering the typical CFS over-reaction of the immune system.
Despite my incapacitation, my spirits have been good. I'm hoping that this means that the drug is working for me and that I'll experience some improvement once I get past this stage. I'm sure things will get much more difficult for me tomorrow, when my kids return home. I love them and miss them, but I've really needed this complete quiet and peace this week.
I'll try to keep you posted on my progress and plan to post some general information on viruses, anti-virals, and CFS tomorrow. That's more than enough for today!
Two weeks ago, I had a follow-up phone consultation with Dr. Levine. In case you're new to my blog, she's the doctor who tested me for various viruses and for immune system function back in March. She found that I had higher than normal levels of HHV-6 (though my EBV and CMV levels were normal), and we decided I would try Valtrex, an anti-viral medication that works against HHV-6 but is much less toxic than Valcyte (which is effective against both HHV-6 and EBV).
So, I've been taking a low dose (500 mg/day) of Valtrex for the past four months. I have had some mild improvements during that time. The improvement has been subtle, difficult to notice on a day-to-day basis, but slow and steady when I look back at my records (I note how I feel each day, on a 1 to 5 scale, on a calendar). Also, both my husband and my mother commented to me recently that I seemed "more like myself" lately.
When I spoke to the doctor two weeks ago, we decided that I would try increasing the dose since the Valtrex seems to be working and I'm tolerating it OK. So, I doubled the dose to 1000 mg/day. Ever since then, I've had severe CFS symptoms almost constantly - sore throat, aches, exhaustion, sleep dysfunction - all my "normal" symptoms but as bad as my worst days every day with very low stamina. I've spent most of the past week in bed or on the couch (thankfully, my kids have been with their grandparents this week).
The good news (I hope) is that this characteristic worsening of symptoms on an anti-viral medication is supposed to be a good sign. Everyone who's taken Valcyte for CFS has reported the same sort of initial reaction. The theory is that this is a "herx" reaction, a temporary worsening caused by the drug killing off lots of virus in cells and tissues that then floods the bloodstream, triggering the typical CFS over-reaction of the immune system.
Despite my incapacitation, my spirits have been good. I'm hoping that this means that the drug is working for me and that I'll experience some improvement once I get past this stage. I'm sure things will get much more difficult for me tomorrow, when my kids return home. I love them and miss them, but I've really needed this complete quiet and peace this week.
I'll try to keep you posted on my progress and plan to post some general information on viruses, anti-virals, and CFS tomorrow. That's more than enough for today!
Thursday, July 12, 2007
I'm Not As Well As I Look
We finally got our internet connection fixed! Now I can start working through all those e-mails from vacation.
It's been a very rough week. Once again (will I never learn??), I had commited to much more than I could handle.
For starters, I did too much yard work last weekend, in a desperate effort to make our entrance presentable for my neighbors who would be coming over this week for our book group discussion. Our yard is like a jungle right now, and almost all of our neighbors have professional landscapers. I just wanted to clear out the weeds along our front walk and maybe plant a few flowers. I spent several hours Saturday (with breaks!) weeding, trying to do most of it while sitting. I woke up Sunday morning and couldn't bend over without excruciating pain. I guess it's a muscle spasm in my back. I spent all day on the heating pad and am still in a fair amount of pain several days later.
Monday, I was scheduled to teach a training course in the morning, as part of some consulting work. I hadn't done any teaching since getting CFIDS, but I thought I could handle a half-day. The combination of the back pain and being on my feet for several hours left me severely crashed by Monday evening. Thank goodness my client asked to postpone Tuesday's work.
I was supposed to host my book group on Wednesday evening (see what I mean about committing to too much?). By Wednesday, I was still badly crashed with aches, sore throat, the works. I had to cancel at the last-minute. I was both embarrassed and relieved when I finally sent the e-mail to my neighbors to cancel. A couple of them responded very compassionately, assuring me not to worry and offering to host instead. The rest were just silent.
I feel as though I've come out of the closet, like my condition has been revealed. I think they all knew I have a chronic illness, but I doubt any of them know how debilitated I am. Who could possibly understand CFIDS without living with it? In my e-mail, I admitted that I shouldn't have offered to host in the first place, that it was more than I could typically handle. I knew that when I volunteered, but I wanted to do my part. Besides, I was embarrassed to be a part of the group without taking my turn like everyone else.
How can you possibly convey to people how debilitating "normal", everyday activities are for someone with CFIDS? I feel as if we live in our own little world here in our house. None of our neighbors could possibly imagine what it's like here. I worry that people look at our weed-filled yard and messy house and just think we're lazy. But you can't go around telling everyone how sick you are. It would make them and me feel uncomfortable, and I really don't want to be pitied, just understood. Sometimes I wish I could wear a sign around my neck that would explain exactly what CFIDs is and what my life is like, something that would provide instant understanding. Or maybe just something like, "I'm not as well as I look."
Ah, well. Life goes on, right? Maybe this week's events, while embarrassing and disappointing, will help my neighbors to understand just a little better. I'm feeling a little better today, continuing my slow recovery out of this latest crash.
It's been a very rough week. Once again (will I never learn??), I had commited to much more than I could handle.
For starters, I did too much yard work last weekend, in a desperate effort to make our entrance presentable for my neighbors who would be coming over this week for our book group discussion. Our yard is like a jungle right now, and almost all of our neighbors have professional landscapers. I just wanted to clear out the weeds along our front walk and maybe plant a few flowers. I spent several hours Saturday (with breaks!) weeding, trying to do most of it while sitting. I woke up Sunday morning and couldn't bend over without excruciating pain. I guess it's a muscle spasm in my back. I spent all day on the heating pad and am still in a fair amount of pain several days later.
Monday, I was scheduled to teach a training course in the morning, as part of some consulting work. I hadn't done any teaching since getting CFIDS, but I thought I could handle a half-day. The combination of the back pain and being on my feet for several hours left me severely crashed by Monday evening. Thank goodness my client asked to postpone Tuesday's work.
I was supposed to host my book group on Wednesday evening (see what I mean about committing to too much?). By Wednesday, I was still badly crashed with aches, sore throat, the works. I had to cancel at the last-minute. I was both embarrassed and relieved when I finally sent the e-mail to my neighbors to cancel. A couple of them responded very compassionately, assuring me not to worry and offering to host instead. The rest were just silent.
I feel as though I've come out of the closet, like my condition has been revealed. I think they all knew I have a chronic illness, but I doubt any of them know how debilitated I am. Who could possibly understand CFIDS without living with it? In my e-mail, I admitted that I shouldn't have offered to host in the first place, that it was more than I could typically handle. I knew that when I volunteered, but I wanted to do my part. Besides, I was embarrassed to be a part of the group without taking my turn like everyone else.
How can you possibly convey to people how debilitating "normal", everyday activities are for someone with CFIDS? I feel as if we live in our own little world here in our house. None of our neighbors could possibly imagine what it's like here. I worry that people look at our weed-filled yard and messy house and just think we're lazy. But you can't go around telling everyone how sick you are. It would make them and me feel uncomfortable, and I really don't want to be pitied, just understood. Sometimes I wish I could wear a sign around my neck that would explain exactly what CFIDs is and what my life is like, something that would provide instant understanding. Or maybe just something like, "I'm not as well as I look."
Ah, well. Life goes on, right? Maybe this week's events, while embarrassing and disappointing, will help my neighbors to understand just a little better. I'm feeling a little better today, continuing my slow recovery out of this latest crash.
Thursday, July 05, 2007
Back Home
We returned home from vacation earlier this week. We had a good trip and especially enjoyed our journey out to Oklahoma, with some wonderful stops along the way. Our time in Oklahoma was a bit more stressful than we had planned. We found my husband's parents in worse shape than we had realized and spent our time there helping them to get back on their feet - doctors' visits, shopping, cooking, etc. In fact, my husband flew back out there yesterday for his mom's back surgery. She broke a vertebra in a recent fall and has been in constant pain, so we're hoping this procedure will help her.
So, we're back home, but life has not yet returned to "normal" (whatever that is!). I have two half-days of consulting work next week, so I'm trying to save up some energy for that, while I work to unpack, clean up, and take care of the kids. Both boys are doing well - thank goodness for Florinef! They're taking full advantage of summer, running around with friends, completely carefree. I am so grateful that OI treatment has worked so well for them, to allow them to play like normal kids. In fact, Craig has been insisting that he no longer has CFIDS; since starting Florinef this spring, his stamina has been incredible.
I have over 200 e-mail messages and am having trouble with my internet connection, so please be patient if you've send me an e-mail. I'm way behind and probably won't catch up until I get past that consulting work next week. I need to help pay for our vacation!
I'll try to post more information and an update on my anti-viral treatment soon (not much new to report, though). Hope everyone is enjoying a nice summer.
So, we're back home, but life has not yet returned to "normal" (whatever that is!). I have two half-days of consulting work next week, so I'm trying to save up some energy for that, while I work to unpack, clean up, and take care of the kids. Both boys are doing well - thank goodness for Florinef! They're taking full advantage of summer, running around with friends, completely carefree. I am so grateful that OI treatment has worked so well for them, to allow them to play like normal kids. In fact, Craig has been insisting that he no longer has CFIDS; since starting Florinef this spring, his stamina has been incredible.
I have over 200 e-mail messages and am having trouble with my internet connection, so please be patient if you've send me an e-mail. I'm way behind and probably won't catch up until I get past that consulting work next week. I need to help pay for our vacation!
I'll try to post more information and an update on my anti-viral treatment soon (not much new to report, though). Hope everyone is enjoying a nice summer.
Sunday, June 24, 2007
In Vacation Mode
We're enjoying our vacation so far. We were quite active for the first part of our trip, and I was surprised and delighted to get through it without any crashes! I have really pushed my physical stamina at times on this trip - hiking, canoeing - and I've handled it surprisingly well. I would love to think that my exercise intolerance is lessening, but it could also be that there's simply much less stress on vacation.
I've had two instances of feeling poorly. It was my 9-year old son's most fervent wish to visit Graceland when we were in Memphis (he loves Elvis!). Both of the boys and I felt bad by the end of our 3-hour visit. That museum-type pace is the worst for Orthostatic Intolerance. Visiting museums is something I really miss. I recovered quickly, though.
The second problem occurred during our very ambitious canoe camping excursion along the Buffalo River in the Ozarks region of Arkansas. My husband and I used to love canoe camping, and we've wanted to share that with our kids for a long time. I thought I could handle it OK since the river has a nice current that keeps you moving along, but I had forgotten how much work it takes to steer. By late afternoon (always my low time of day) on our first day, I just sort of lost it - got really frustrated, yelled at the kids, made everyone mad at me. I finally realized I was pushing myself too hard physically and was also hungry. Low blood sugar can turn me into a different person. We stopped to rest, cooled off in the river, and had a snack. I improved after that and handled the rest of the trip very well. In fact, I fully expected to crash the next day, after two days of paddling for 3 hours each day, but I didn't. I actually felt very good the next day! Amazing. After that first episode, I tried to take lots of breaks, eat lots of snacks, and stay cool with frequent swim breaks. I guess it worked. We all had a wonderful time.
I'm finding that I feel quite well as long as I can stick to my typical routine - get to bed before 10 pm, take a nap in the afternoon, and have frequent meals to keep the blood sugar steady.
We'll be heading back home soon, so I should be able to blog more regularly again - after we get unpacked!
I've had two instances of feeling poorly. It was my 9-year old son's most fervent wish to visit Graceland when we were in Memphis (he loves Elvis!). Both of the boys and I felt bad by the end of our 3-hour visit. That museum-type pace is the worst for Orthostatic Intolerance. Visiting museums is something I really miss. I recovered quickly, though.
The second problem occurred during our very ambitious canoe camping excursion along the Buffalo River in the Ozarks region of Arkansas. My husband and I used to love canoe camping, and we've wanted to share that with our kids for a long time. I thought I could handle it OK since the river has a nice current that keeps you moving along, but I had forgotten how much work it takes to steer. By late afternoon (always my low time of day) on our first day, I just sort of lost it - got really frustrated, yelled at the kids, made everyone mad at me. I finally realized I was pushing myself too hard physically and was also hungry. Low blood sugar can turn me into a different person. We stopped to rest, cooled off in the river, and had a snack. I improved after that and handled the rest of the trip very well. In fact, I fully expected to crash the next day, after two days of paddling for 3 hours each day, but I didn't. I actually felt very good the next day! Amazing. After that first episode, I tried to take lots of breaks, eat lots of snacks, and stay cool with frequent swim breaks. I guess it worked. We all had a wonderful time.
I'm finding that I feel quite well as long as I can stick to my typical routine - get to bed before 10 pm, take a nap in the afternoon, and have frequent meals to keep the blood sugar steady.
We'll be heading back home soon, so I should be able to blog more regularly again - after we get unpacked!
Sunday, June 10, 2007
Busy, busy!
I haven't had much time for blogging in the flurry of activity lately. I had two major consulting assignments to finish. Fortunately, it was work I could do from home, on my laptop, but it was still time-consuming, especially when done in little hour or two-hour increments.
My boys both finished school last week, with all of the last-minute activities associated with that (two picnics, two awards ceremonies, etc.) That's all behind us now for the next two months, along with homework, tests, and school functions - hurray!
Jamie and I both crashed last week. We both had nausea and knee pain, in addition to our usual symptoms, so we were probably exposed to a virus of some sort. he managed OK, but I was in really bad shape on Friday, so we had to cancel our annual start-of-summer excursion to a local creek with our best friends. Rough day, but I'm doing better now.
Now, we have a whole new flurry of activity going on! We're getting ready for our annual summer road trip to Oklahoma to visit family. We're all looking forward to it, but there's a lot to do to get ready. I probably won't have much time for writing for awhile, though I am taking my laptop along this time.
Hope everyone out there is feeling well enough to enjoy the start of summer!
My boys both finished school last week, with all of the last-minute activities associated with that (two picnics, two awards ceremonies, etc.) That's all behind us now for the next two months, along with homework, tests, and school functions - hurray!
Jamie and I both crashed last week. We both had nausea and knee pain, in addition to our usual symptoms, so we were probably exposed to a virus of some sort. he managed OK, but I was in really bad shape on Friday, so we had to cancel our annual start-of-summer excursion to a local creek with our best friends. Rough day, but I'm doing better now.
Now, we have a whole new flurry of activity going on! We're getting ready for our annual summer road trip to Oklahoma to visit family. We're all looking forward to it, but there's a lot to do to get ready. I probably won't have much time for writing for awhile, though I am taking my laptop along this time.
Hope everyone out there is feeling well enough to enjoy the start of summer!
Friday, June 01, 2007
Anti-Virals and Emotional Instability
After my blog last week about the sudden depression that caught me off guard, an acquaintance from the immune support message boards sent me an e-mail that made me feel a whole lot better. Here's part of what she said:
"Valtrex certainly can cause a die-off reaction! My doctor, who has treated more than 200 patients with antivirals, states that about 30% of his patients (admittedly a very sick group) get a significant die-off with Valtrex or Famvir.
I have been struggling with die-off symptoms on Famvir (a very similar drug to Valtrex) for seven months now. The ones I had at the beginning were every bit as bad as those experienced by many Valcyte patients. (This was especially surprising to me since my level of functioning prior to the drug was pretty high.....at least a notch or two above yours, based on what I've read in your blog.)
Note also that the biggest initial die-off reactions to antivirals tend to be in emotional lability. This was the case for me, I have noted it on the ProHealth board, and my doctor told me (after I'd already experienced it) that it was the case for many or most of his patients who got die-off as well.
My doctor told me when I was struggling with it that my suffering eventually would lead to improved mood in general. Those around me (my husband etc.) now state that my emotional state (in terms of positivity and resilience to stress) has indeed improved a lot since I started the drug, regardless of how I seem to be feeling physically or how well my cognitive abilities are doing. (A number of my other symptoms have improved now compared to where I started too, but only when I stop taking the drug for a day or two. The continued die-off from the drug seem to be covering up the improvements.)"
I found this extremely interesting. As I mentioned in a previous blog, I have sometimes felt lately that I was losing my mind - feeling fine one day and sobbing uncontrollably the next. It's so comforting to find out this is a normal reaction.
More on reactions to Valtrex in another blog. The system is about to shut down....
"Valtrex certainly can cause a die-off reaction! My doctor, who has treated more than 200 patients with antivirals, states that about 30% of his patients (admittedly a very sick group) get a significant die-off with Valtrex or Famvir.
I have been struggling with die-off symptoms on Famvir (a very similar drug to Valtrex) for seven months now. The ones I had at the beginning were every bit as bad as those experienced by many Valcyte patients. (This was especially surprising to me since my level of functioning prior to the drug was pretty high.....at least a notch or two above yours, based on what I've read in your blog.)
Note also that the biggest initial die-off reactions to antivirals tend to be in emotional lability. This was the case for me, I have noted it on the ProHealth board, and my doctor told me (after I'd already experienced it) that it was the case for many or most of his patients who got die-off as well.
My doctor told me when I was struggling with it that my suffering eventually would lead to improved mood in general. Those around me (my husband etc.) now state that my emotional state (in terms of positivity and resilience to stress) has indeed improved a lot since I started the drug, regardless of how I seem to be feeling physically or how well my cognitive abilities are doing. (A number of my other symptoms have improved now compared to where I started too, but only when I stop taking the drug for a day or two. The continued die-off from the drug seem to be covering up the improvements.)"
I found this extremely interesting. As I mentioned in a previous blog, I have sometimes felt lately that I was losing my mind - feeling fine one day and sobbing uncontrollably the next. It's so comforting to find out this is a normal reaction.
More on reactions to Valtrex in another blog. The system is about to shut down....
Thursday, May 24, 2007
Taking It Slow
I'm doing much better emotionally and trying hard to recover physically. I have no idea what caused this crash (which is always frustrating to me), but fortunately, the depression only lasted a day.
Thank you for all the supportive comments. When I'm in my "normal", optimistic state of mind, I know logically what causes those sudden bouts of depression, but, somehow, when I'm in the midst of one, I have trouble seeing it logically. I really hate the feeling of having no control...but that's what CFIDS is all about, isn't it?
I have a huge amount of work to do, but I am trying very hard to focus on taking care of myself so I can recover from this crash sooner. I've spent much of the past two days in bed. Lunch with my friend helped tremendously yesterday, as did the flowers my husband brought home for me. I am trying to listen to my body. Instead of pushing myself to keep working through the crash, as is my normal inclination, I am trying hard to rest aggressively (I love the paradox of that expression!) and keep my stress levels low.
Time for another nap.
Thank you for all the supportive comments. When I'm in my "normal", optimistic state of mind, I know logically what causes those sudden bouts of depression, but, somehow, when I'm in the midst of one, I have trouble seeing it logically. I really hate the feeling of having no control...but that's what CFIDS is all about, isn't it?
I have a huge amount of work to do, but I am trying very hard to focus on taking care of myself so I can recover from this crash sooner. I've spent much of the past two days in bed. Lunch with my friend helped tremendously yesterday, as did the flowers my husband brought home for me. I am trying to listen to my body. Instead of pushing myself to keep working through the crash, as is my normal inclination, I am trying hard to rest aggressively (I love the paradox of that expression!) and keep my stress levels low.
Time for another nap.
Wednesday, May 23, 2007
Depression & Obsession
Damn. I knew I shouldn't have announced how good I was feeling. I felt pretty yucky yesterday, getting worse and worse as the day wore on. I practically had to chain myself to my laptop to get a little work done because I was having so much trouble focusing on my current work project. In the afternoon and evening, the darkness began to creep into my mind and emotions. By 8:30 pm, I was feeling so depressed and forlorn that I went to bed early just so that the day would finally end.
But it didn't end. Despite the half-Ambien I took, sleep eluded me. My mind got caught in an obsessive cycle. This happens to me sometimes with a crash. It's worse than any physical pain or discomfort. My brain grabs hold of some tiny dark feeling and obsesses over it until it spirals out of control. In this state, anything can get me going - something my mom said on the phone, some real or imagined slight from my husband - and my mind grabs it like a dog with a chew toy until it seems to take over my whole being. I finally took the other half an Ambien and somehow got to sleep eventually.
Am I crazy? Am I losing my mind? That's how it feels. Yesterday morning, I was filled with peace and gratitude, enjoying the gorgeous weather and feeling satisfied with my life. Twelve hours later, I was a basket case, thinking that my life was falling apart. My husband came home from golfing at about 9 pm, and I pretended to be asleep just because I didn't want to subject him to my darkness. He loves to golf and always comes home on top of the world, and I didn't want to ruin his good mood or, even worse, take out my dark feelings on him.
What's wrong with me? I know, somewhere in the rational side of my mind, that all of this is a biochemical thing, the result of CFIDS-influenced hormonal shifts in my brain. This never happened to me before CFIDS and now it only accompanies other crash symptoms in a predictable pattern. Right? Oh, someone out there, please tell me this happens to you, too, so I'll know I'm not losing my mind.
OK. I'm going to try to help myself. I've made arrangements to meet my closest friend for lunch, so I can try to get out of the house and out of my own head for awhile. First, I'm going back to bed to try to get some more sleep. It's the only thing that will help me pull out of this hole.
But it didn't end. Despite the half-Ambien I took, sleep eluded me. My mind got caught in an obsessive cycle. This happens to me sometimes with a crash. It's worse than any physical pain or discomfort. My brain grabs hold of some tiny dark feeling and obsesses over it until it spirals out of control. In this state, anything can get me going - something my mom said on the phone, some real or imagined slight from my husband - and my mind grabs it like a dog with a chew toy until it seems to take over my whole being. I finally took the other half an Ambien and somehow got to sleep eventually.
Am I crazy? Am I losing my mind? That's how it feels. Yesterday morning, I was filled with peace and gratitude, enjoying the gorgeous weather and feeling satisfied with my life. Twelve hours later, I was a basket case, thinking that my life was falling apart. My husband came home from golfing at about 9 pm, and I pretended to be asleep just because I didn't want to subject him to my darkness. He loves to golf and always comes home on top of the world, and I didn't want to ruin his good mood or, even worse, take out my dark feelings on him.
What's wrong with me? I know, somewhere in the rational side of my mind, that all of this is a biochemical thing, the result of CFIDS-influenced hormonal shifts in my brain. This never happened to me before CFIDS and now it only accompanies other crash symptoms in a predictable pattern. Right? Oh, someone out there, please tell me this happens to you, too, so I'll know I'm not losing my mind.
OK. I'm going to try to help myself. I've made arrangements to meet my closest friend for lunch, so I can try to get out of the house and out of my own head for awhile. First, I'm going back to bed to try to get some more sleep. It's the only thing that will help me pull out of this hole.
Monday, May 21, 2007
Progress?
I know from all of your e-mails and comments that many people are waiting to hear how I'm doing on my new Valtrex treatment. I've been almost afraid to discuss it for fear of setting myself up to be disappointed (or jinxing myself, as my kids would say!)
I had about a month of feeling pretty crummy, but I hesitate to attribute that to Valtrex. It's not known to cause a "herx" reaction (i.e. an initial worsening due to virus die-off), plus I've had a very stressful month. I've had way too much going on with work, home, and family. My husband and I had a minor crisis which caused a significant amount of stress one week. We've also had trips to visit family and family staying with us - both enjoyable but tiring.
Than came last week, my fifth week on Valtrex. I felt really, really good all week long. In fact, I've now had about 8 days straight of feeling good, and I'm cautiously beginning to wonder if maybe this is a positive response to the anti-viral treatment.
The problem is, of course, that CFIDS is defined by unpredictable ups and downs, so it's always difficult to assess the efficacy of a new treatment. Also, I know that stress affects me quite severely, and last week was the first week in a long time when I didn't feel stressed. So, is it cause or effect? Am I feeling good simply because I'm less stressed or am I less stressed because I'm feeling better? See why I've been avoiding this train of thought??
Whatever the reason is, there's no denying how wonderful this past week has been. It's not only an improvement in my physical symptoms. This past week, I have experienced a clarity of thought and an enthusiasm that has been missing for a long time. It's subtle - something I didn't even realize was missing - feeling sharp and engaged. I'm having trouble putting it into words, but I just feel more like me, like the old me, the real me. It makes me wonder how much of the "emotional" effects of CFIDS (feeling down, lacking motivation, etc.) are really biochemical.
I've always said that I've been fortunate to have only very mild brain fog. Sure, I feel sluggish when I'm badly crashed, but otherwise my only indication of cogntitive dysfunction has been difficulty with word finding (a tough one for a writer!). I wonder now, though, whether my thinking has been more affected than I assumed. Many of the people on the immune support message boards taking Valcyte mentioned that the first improvement they noticed was in their cognitive function. Maybe these mysterious viruses affect us even more than we thought.
So, I'm still waiting and watching but feeling pretty optimistic. Now, don't get me wrong - I'm still napping every day, needing at least 9 hours of sleep a night, and feeling worse if I do too much - but any improvement is welcome.
I went for my week 5 lab tests today and will have a phone conference with Dr. Levine next week. I'll keep you posted!
I had about a month of feeling pretty crummy, but I hesitate to attribute that to Valtrex. It's not known to cause a "herx" reaction (i.e. an initial worsening due to virus die-off), plus I've had a very stressful month. I've had way too much going on with work, home, and family. My husband and I had a minor crisis which caused a significant amount of stress one week. We've also had trips to visit family and family staying with us - both enjoyable but tiring.
Than came last week, my fifth week on Valtrex. I felt really, really good all week long. In fact, I've now had about 8 days straight of feeling good, and I'm cautiously beginning to wonder if maybe this is a positive response to the anti-viral treatment.
The problem is, of course, that CFIDS is defined by unpredictable ups and downs, so it's always difficult to assess the efficacy of a new treatment. Also, I know that stress affects me quite severely, and last week was the first week in a long time when I didn't feel stressed. So, is it cause or effect? Am I feeling good simply because I'm less stressed or am I less stressed because I'm feeling better? See why I've been avoiding this train of thought??
Whatever the reason is, there's no denying how wonderful this past week has been. It's not only an improvement in my physical symptoms. This past week, I have experienced a clarity of thought and an enthusiasm that has been missing for a long time. It's subtle - something I didn't even realize was missing - feeling sharp and engaged. I'm having trouble putting it into words, but I just feel more like me, like the old me, the real me. It makes me wonder how much of the "emotional" effects of CFIDS (feeling down, lacking motivation, etc.) are really biochemical.
I've always said that I've been fortunate to have only very mild brain fog. Sure, I feel sluggish when I'm badly crashed, but otherwise my only indication of cogntitive dysfunction has been difficulty with word finding (a tough one for a writer!). I wonder now, though, whether my thinking has been more affected than I assumed. Many of the people on the immune support message boards taking Valcyte mentioned that the first improvement they noticed was in their cognitive function. Maybe these mysterious viruses affect us even more than we thought.
So, I'm still waiting and watching but feeling pretty optimistic. Now, don't get me wrong - I'm still napping every day, needing at least 9 hours of sleep a night, and feeling worse if I do too much - but any improvement is welcome.
I went for my week 5 lab tests today and will have a phone conference with Dr. Levine next week. I'll keep you posted!
Wednesday, May 16, 2007
Just Do It!
I've really been overwhelmed the past few weeks with all that's going on - family birthdays, writing deadlines, consulting work, and so many school functions! This time of year is always so hectic.
Today, I finally quit procrastinating - a favorite hobby of mine - and did my part for International CFIDS Awareness Day (which was May 12). Every year, I think I'll be able to participate in the CFIDS Association's Lobby Day, but it always falls at this busy time of year when I have no energy to spare. Fortunately, they've made it easy to help out, even for those with CFIDS who are unable to leave their homes.
Just use this link to go to the CFIDS Association's Grass Roots Action Center.
They currently have 5 different actions you can take from your computer. Each one sends letters to different political and media people to help raise awareness of CFIDS and support greater research funding. The CAA provides the letters; all you do is click a few buttons and add your name and address. You can also add a couple of your own sentences that describe how CFIDS has affected your life.
I just took all 5 actions, sent a bunch of letters, and it took less than 10 minutes! You only need to enter your information once, and you can write your couple of sentences once and just paste them into each letter.
It's FAST, it's very easy, and it really does make a difference.
There have been some remarkable advances in research in the past two years, but it won't go anywhere without additional support and funding. So, do your part. Go now....
Just do it!
Today, I finally quit procrastinating - a favorite hobby of mine - and did my part for International CFIDS Awareness Day (which was May 12). Every year, I think I'll be able to participate in the CFIDS Association's Lobby Day, but it always falls at this busy time of year when I have no energy to spare. Fortunately, they've made it easy to help out, even for those with CFIDS who are unable to leave their homes.
Just use this link to go to the CFIDS Association's Grass Roots Action Center.
They currently have 5 different actions you can take from your computer. Each one sends letters to different political and media people to help raise awareness of CFIDS and support greater research funding. The CAA provides the letters; all you do is click a few buttons and add your name and address. You can also add a couple of your own sentences that describe how CFIDS has affected your life.
I just took all 5 actions, sent a bunch of letters, and it took less than 10 minutes! You only need to enter your information once, and you can write your couple of sentences once and just paste them into each letter.
It's FAST, it's very easy, and it really does make a difference.
There have been some remarkable advances in research in the past two years, but it won't go anywhere without additional support and funding. So, do your part. Go now....
Just do it!
Tuesday, May 01, 2007
I Think I Can...
Remember the Little Engine That Could? That story is a perfect illustration of the way that I was brought up. I have always believed that I could do anything I set my mind to, that anything was possible if I only worked hard enough. So, why can't I get well? This has been one of the hardest things for me to accept about being ill - that I don't have control over my body or my life in the way I thought I did.
If a strong will was all that it took to get well, I would have overcome this illness long ago. I want so much to be able to be active again - to exercise, lose weight, rebuild some muscle, have energy for my husband and family, even simply just to take a walk on a beautiful day without worrying about the consequences. I want all of this with every bit of my being, but that's not enough.
Besides a strong will, I've also worked hard to get well. I rest as much as I can, watch what I eat, try to reduce stress. I have no alcohol, no caffeine, no dairy. I limit my activities - social, mental, and physical. I read and research and try everything that sounds promising. But all this hard work doesn't do the trick either.
I do what I can and control what I'm able to. I'm certain all this effort hasn't been in vain. It's what's keeping me able to function as well as I do. I'm not bed-ridden, like so many other people with CFIDS. I still have much to be grateful for. It's just that, some days, I want more. I want wellness and health.
So, I keep trying.
I've been on Valtrex for a week and a half so far. I felt pretty rotten last week, but I was under a great amount of stress. I've had the gastrointestinal problems that Dr. Levine warned me about, but those seem to be easing a bit this week. I have to keep reminding myself that this is a long-term treatment (6 months) and not a cure, but I would so welcome even a little bit of improvement.
I think I can, I think I can....
If a strong will was all that it took to get well, I would have overcome this illness long ago. I want so much to be able to be active again - to exercise, lose weight, rebuild some muscle, have energy for my husband and family, even simply just to take a walk on a beautiful day without worrying about the consequences. I want all of this with every bit of my being, but that's not enough.
Besides a strong will, I've also worked hard to get well. I rest as much as I can, watch what I eat, try to reduce stress. I have no alcohol, no caffeine, no dairy. I limit my activities - social, mental, and physical. I read and research and try everything that sounds promising. But all this hard work doesn't do the trick either.
I do what I can and control what I'm able to. I'm certain all this effort hasn't been in vain. It's what's keeping me able to function as well as I do. I'm not bed-ridden, like so many other people with CFIDS. I still have much to be grateful for. It's just that, some days, I want more. I want wellness and health.
So, I keep trying.
I've been on Valtrex for a week and a half so far. I felt pretty rotten last week, but I was under a great amount of stress. I've had the gastrointestinal problems that Dr. Levine warned me about, but those seem to be easing a bit this week. I have to keep reminding myself that this is a long-term treatment (6 months) and not a cure, but I would so welcome even a little bit of improvement.
I think I can, I think I can....
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