Is it safe to hope again? That's the question we ask when it seems we've tried everything with a kid that has a chronic disease.
Listening to stories of how this treatment or that treatment worked for kid's who suffered from Crohn's disease, I watch how the mothers' of these kids sigh with proud relief. You know the look you see when your team wins but you know they were just lucky.
Today my daughter tried a new drug called methotrexate. It's a drug that is used for chemotherapy patients and it has a long list of side effects. We got the speech on how this drug has worked for others. After a while you want to ask what is wrong with me or my daughter if this drug works for others but not for her.
Where do I draw the line between protecting her health and letting her live a semi-normal life? Since I'm not really sure, she's going to try this drug. I hope it works. I hope there aren't too many side effects. I hope it doesn't become unbearable.
It doesn't matter if it's safe to hope. We hope anyway.
Wednesday, February 17, 2010
Thursday, February 11, 2010
Weighed, Measured and Found Wanting
The scene begins in a medieval prison cell when the good guy, Heath Ledger, arms outstretched and chained to a pole is subjected to the worst kind of abuse imaginable. "You've been weighed, measured and found wanting", says the bad guy to Ledger as he punches a defenseless hero in the gut.
Weighed, measured and found wanting. That's what I felt for my daughter, who had been diagnosed with Crohn's disease since she was 9. The medical treatment plans that included surgery, infusions, oral meds and an NG feeding tube were judged by inflamation markers, iron levels and growth.
She weighed in at 52 lbs. She lost 5 lbs., 10 percent of her body weight. She gained half an inch and is not even four and half feet at the age of 13. Waiting for the doctor to come into our exam room, felt like court sentencing. My daughter had already started crying, chanting "not the feeding tube, not the feeding tube." My mind was going a mile a minute trying to figure out what might have caused the weight loss.
It wasn't until days later that we received the verdict. My daughter would be doing weekly injections of methaltrexate in addition to her remicaid treatments.
Arguments over eating enough, getting enough sleep and taking her meds are a common theme in our house. After four years of trying various treatment plans-all with side effects, how does my daughter NOT feel judged? How do I judge the disease and not the child?
Weighed, measured and found wanting. That's what I felt for my daughter, who had been diagnosed with Crohn's disease since she was 9. The medical treatment plans that included surgery, infusions, oral meds and an NG feeding tube were judged by inflamation markers, iron levels and growth.
She weighed in at 52 lbs. She lost 5 lbs., 10 percent of her body weight. She gained half an inch and is not even four and half feet at the age of 13. Waiting for the doctor to come into our exam room, felt like court sentencing. My daughter had already started crying, chanting "not the feeding tube, not the feeding tube." My mind was going a mile a minute trying to figure out what might have caused the weight loss.
It wasn't until days later that we received the verdict. My daughter would be doing weekly injections of methaltrexate in addition to her remicaid treatments.
Arguments over eating enough, getting enough sleep and taking her meds are a common theme in our house. After four years of trying various treatment plans-all with side effects, how does my daughter NOT feel judged? How do I judge the disease and not the child?
Thursday, May 3, 2007
Giving
Another benefit of purging is you get to be generous. The basic principle is if you have more than one, give the duplicates to someone who doesn't. If you have two potato mashers, give one away. Unless you don't have running water, you I don't need to keep Aunt Emma's, and both grandmother's potota mashers. Some people don't even use them anymore. Put it in a bag and donate to the blind or the veterans or better yet, ask a friend or a neighbor if they could use a potota masher. A similar priniciple that I use with my kids is what comes in, something goes out in it's place. Twice a year, before birthdays and Christmas, my kids go through their closets and donate clothes and toys to various charities. It makes their rooms easy to maintain. With just a few important things, they can usually get their entire room clean in10-15 minutes, instead of spending hours hoarding toys they have no interest in. It gives some other kid some great gifts that they might love.
Purging and giving, all part of letting go and trusting that when you need something you'll be able to obtain it is actually a kind of freedom. Even the very, very few times that I have given something away that I wanted later, I really haven't needed anything that didn't somehow work out.
Purging and giving, all part of letting go and trusting that when you need something you'll be able to obtain it is actually a kind of freedom. Even the very, very few times that I have given something away that I wanted later, I really haven't needed anything that didn't somehow work out.
Purging
Purging is my favorite thing! No, I'm not talking about food. The best thing I took from the flylady program was getting rid of stuff. Giving things away that I wasn't using and had not been using for more than 6 months did several things for me. First, it opened up space and relieved me from the responsibility of maintaining that item. Did you ever have to dig through boxes and boxes to find what you wanted? Then, you have to put everything back and maybe you found what you wanted or maybe you didn't, but all that time and clean up is the price you pay for maintaining that something. In most cases, it's easier to go buy a new one, borrow one or be more creative. During a weekly challenge, I was able to get rid of 1000 lbs. of stuff in my basement and make a room and buy a bed for my son with the proceeds from the garage sale. What didn't sell the first time gets given away!
Using a timer
Well, I cleaned house today. Since I've been enrolled in 13 credit hours at school, job, etc., I can't say that I have worked my zones. One of the great things that I did take away from the flylady program was the use of a timer. Since I'm an all-or-nothing, maybe sort of a perfectionist-type of person, I find myself either letting one project led me into another and another and another. The other option is that I don't start something because I know I won't be able to finish it. The beauty of using a timer is that you are only responsible for the time you allot yourself. If I set the timer for 15 minutes, I work like crazy on that project until it goes off. It keeps me focused, it makes feel like I've completed something. It's like taking a small bite, that I can nibble on another day.
Cleaning
I mentioned that I hated cleaning, but this website, www.flylady.net really helped. It's free to subscribe and if you do, you'll have daily reminders in your email. Some people really go crazy about getting the emails, but I have no problem pressing delete. First, this plan divides your place into zones. It gives you a chance to really focus on one area at time. Just to make it more fun, you get these emails with missions. One mission is to clean your cabinets or dig for change in your sofa. You get to hear what others have found via the responses on the site. It almost makes cleaning fun.
I hate cleaning house. What I hate more is cleaning up the same thing over and over again. Dishes, vacuuming, bathrooms, that's expected, but I really hate picking up something that is of no value to me and evidently not that valuable to the person who keeps it laying around, but just can't seem to throw it away.
Did I mention that I have kids? After 4 kids, (the last a set of twins), my husband found a website called www.flylady.net. It an organizational system that gives you a plan for cleaning your house, organizing your finances, etc. Although I'm not technically doing the program everyday, I've learned alot.
Did I mention that I have kids? After 4 kids, (the last a set of twins), my husband found a website called www.flylady.net. It an organizational system that gives you a plan for cleaning your house, organizing your finances, etc. Although I'm not technically doing the program everyday, I've learned alot.
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