Last night while taking a bath Oscar laid down on his back and said, “Look Daddy! I’m floating like a bird!” (It gets funnier the longer you think about it.)
I also learned yesterday that when a boy drops his candy on the ground and you say, “Go wash that in the bathroom” you need to add the word “sink.”
Sorry for another boring health post. I heard from two more people taking Valcyte yesterday though who are reading the blog for these updates, so I guess for now I’ll keep doing them. (But, throw me a bone and leave a comment, people!)
I’m continuing to be up one day and down the next. I spent another weekend in bed, felt better yesterday, am down again today… I blame a series of viruses going around though. Darin had a stomach thing. Oscar has a bad cold. I know every time I fight something off I feel horrible–it brings my whole body down even if I never come down with the virus. It feels like two steps forward and one step back, but I’m blaming winter bugs for now. It probably doesn’t help that Oscar woke up cheerful and ready to play at 4am. I guess anyone would be tired.
Anyway, I had a Dr. Lerner appointment yesterday and realized that I’ve dropped half a point (which will make sense of to those of you following Lerner’s energy index.) Otherwise, he wasn’t discouraged–at least as far as I could tell from his constant cheerful demeanor. He commented that winter is always rough, and that I’m still very early in the treatment. I complained about insomnia and tachycardia (rapid heart beat), and he gave me a sleeping pill, a beta blocker, and a script to redo the 24-hour heart monitor. Just like a man… I was really just venting, and then he goes trying to fix it… that’s the last time I vent about symptoms a doctor! (Sorry… that’s my lack-of-sleep attempt at CFS humor.) Anyway, I’ve been afraid to take the new pills, particularly the beta blocker, until I can do more reading about them. Mostly I’m just afraid of anything that might make me feel worse–especially tired or dizzy, but I’m also still a nature girl at heart and this feels like a lot of drugs.
On that note, sort of, I did get a GREAT (and cheap!) massage at Beaumont and set up monthly appointments for more. I have a ‘plan b’ holistic physician that I’m planning to see in the spring if, after 6 months of Valcyte, I don’t have a lot of improvement. Or, maybe even if I do… it would probably be good to have all the nutrient levels checked again, and the previous holistic person is only allowed to see clients who are in therapy at the clinic where she practices. (Where the therapist-who-just-didn’t-get-CFS works.)
I also went to my off-beat chiropractor, Dr. Bowler, this week who gave me an adjustment I couldn’t feel and recommended cypress oil for my phantom gallbladder pain. I always have to suspend disbelief a bit when I go there (her office is also where I go for zero balance–mentioned in an earlier post), but I know when I do what she says, I feel better. She gives me these little assignments that ensure I take care of myself–like my 30 minute raindrop massages that consist of rubbing fragrant oils into my feet and then covering them with a warm towel to boost my immune system. After an adjustment she’ll say, “Is Darin home tonight? After this adjustment you need to spend the whole evening resting.” She’s also validated the exhaustion I sometimes feel after a day with the boys. She told me, “Until kids are 7, they literally live off your vitality. When they’re 7, they make their own vitality. So, really, they are literally, every day, sucking the life right out of you.” I have no idea if it’s true, but I love it. I only see her a couple times a year, but each visit is like a little vacation where everything is warm and fragrant and you feel deep down that everything is really okay. Actually, with Dr. Bowler, who needs therapy?
Okay, now I’m officially procrastinating. I need to get back to work to pay for all the aforementioned stuff!
Oscar has been entertaining himself for the last 30 minutes by closing his eyes and running through the house… running into walls, the dining room table, the dog, a shelf… all followed by a dazed look and then enormous laughter.
What do you do with that?
I think I’m officially past 2 months now… and still sick. I felt better for a couple days after the last post, but it didn’t last. I have migraine-quality headaches, nausea, exhaustion, aches, dizziness, joint pain, oh… and the insomnia is back… essentially all the symptoms of a bad flu without the ability to sleep. I have another appointment with Dr. Lerner on Monday. So, still waiting for better, better, better…
Our friend’s brother Jim Wallis made his second appearance on The Daily Show last night to promote his new book. In the interview he suggested banks send their big bonuses to Haiti. It’s exciting to almost know him.
Bill, Jim’s brother, dropped off a copy of Jim’s new book this past weekend. It’s called Rediscovering Values: A Moral Compass for the New Economy. Not exactly a gripping title. The first chapter is called, “Sunday School with Jon Stewart” though, so I am intrigued.
Anyway, here is the interview…
http://www.thedailyshow.com/watch/wed-january-20-2010/jim-wallis
At the risk of doing that annoying thing parents do–thinking every mundane thing their child says is hilarious–here are a few recent hilarious Oscar stories.
When playing with my computer (which he knows he’s not allowed to do) he looked over and saw me giving a disapproving look. I thought he was feeling remorse when he replied, “There’s just no words, Mom. There’s… there’s just no words.” A couple seconds later her ran back to the computer, clicked, brought up a text document and exclaimed “There’s the words!”
We went to El Comal this past weekend for some authentic Guatemalan cuisine… and ended up eating at their Mexican buffet. Oscar picked a variety of foods and, shoveling it all in, closed his eyes, tossed his head back, and said, “Oh, that is SO good guys!” It’s like he’d been waiting three years for a decent meal. So much for my delicious vegetarian, gluten-free lasagna.
And, my favorite. Oscar was playing with his castle and a bowl of Cheerios. Once he got my attention with a “Mom! Mom! Look!” he said, “And, then you.. because you move these, then, and then, because you have to do this, and then you poke it, and then well you, because… and that’s how you make a gerbil!” Now you know.
I’m a couple days late posting this week because I’ve been sick, sick, sick–the whole regular host of flu symptoms, and I don’t know why. I mean, other than the obvious I-have-CFS thing, I don’t know why. I don’t feel like I overdid it physically. I could blame stress, but this week certainly wasn’t any more stressful than the last. I hate this illness because it’s so unpredictable. If I can’t point to something I did to cause a flare up then I’m not in control of it happening again… and I hate not being in control. Besides, when I’m feeling well I get so stupidly optimistic that I’m going to continue getting better and better that I get completely distraught when I find myself sick yet again. So, yesterday, when I was too sick to sit up or keep my eyes open, I was a mess. Today I can work and read though, and I started the day getting caught up on Modern Family, which always cheers me up. So, anyway, I am doing better today and hoping to keep going in that direction.
Just a quick update–there’s not much to say because I had a mostly good week! Saturday night we went out with friends, and I was sick after dinner… but that was probably a combination of stress and bar food. I’m not about to go running or even running errands, but I’m finding that I don’t need a nap every day now. Sometimes I can just rest with a book for a little while during Oscar’s nap, and I still feel fine for the rest of the afternoon. (Okay, by 8pm I’m tipping over, but still… this is progress!) Or, where I used to feel horrible for the rest of the day if I did nap, I’m starting to wake up feeling fairly almost okay. And, I feel like the brain fog is lifting. I know there will still be ups and downs, but I’m pretty optimistic right now. Major symptoms this week were sore muscles, headaches (though not as bad) and scalp pain (???)… so don’t pick on my messy hair.
Oh, and I just made an appointment for a massage at Beaumont tomorrow. Ahh!
Over the weekend I read a 20-some page report on Gabriel. I had been viewing it as just a requirement to getting an appointment with the behavioral pediatrician, but reading through it was such a relief. Every aspect of his life is detailed and it was wonderful to see that someone else saw our baby for the loving, intelligent, complicated child he is and not just as a series of ‘bad’ behaviors. Our next step is to visit the doctor who can treat him. In short, in addition to the expected diagnoses related to insecure attachment, depression and anxiety, Gabriel has Tourette Syndrome.
Lucky him, he has the rare full list of symptoms… facial tics, vocal tics, arm flaps, impulsive actions, hyperactivity… and the ‘I hate you’s. Despite what you see in the movies, saying offensive things is very rare with TS. And yet the other night, he was just playing quietly with animals muttering “I hate you” over and over. When I asked him about it he said, “Oh, that? Yeah, I don’t know why I keep doing that. You can ignore it.” He went back to his playing and muttering. Since then it’s getting more frequent, he says, “I hate you… I mean I love you! I don’t know why I do that…” and back to playing.
As he verbalizes more and from what we learned from this report, I am again amazed by the immensity of his fear and the amount of courage it takes him to get through a day. Last night he accidently scratched Oscar as they were snuggling down to sleep. After I got Oscar settled, Gabe burst into tears and said, “I just think when kids hurt their little brothers their parents will get rid of them!” Then he asked, his voice filled with terror, “Are you going to give me away now?” Remembering what we’ve learned in therapy, I said, “Wow, you think just because of a little accident a mom and dad would get rid of the child they love so much? Gabe, I’m so sorry you think that! That must be so scary not to understand that adoption is forever or to think we would want to get rid of you!” He started to calm down and settle back into my arms, but then just as he was dozing off to sleep he said, “I just feel like I don’t deserve to be loved.” At that point I forgot all the feeling-validation rules, but it didn’t really matter. He was asleep and didn’t hear me muttering through tears, “Oh Gabe, you deserve all the love in the world. I love you, I love you, I love you.”
Well, yesterday I was feeling well! Today I have some stomach thing… I broke down and took an anti-nausea, which is making me VERY dizzy… and, ironically, hungry… and making me type more ellipsis than usual. The good (?) news is that Darin has it, too… sorry Darin, so it’s probably not CFS related.
In other news, sounds like they may have caught the guys who broke into Darin’s office. This happened only a block away from us, at about the same time, and just one night later.
http://www.freep.com/article/20100106/NEWS03/100106017/1322/Police-Parolees-may-be-tied-to-Ferndale-burglaries
Somehow I was picturing an 11-year old with a Pokemon backpack… not two adults on parole. What are the odds they haven’t pawned all our stuff yet?