Friday, February 22, 2008

Cabin Fever


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!

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.

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!