My Remicade infusion this morning took an abnormally long time. First, it took me an hour to get to the Dr's office instead of 25 minutes. Then, shortly after the saline, hydrocortisone, and Benadryl, when the real stuff started flowing, I started getting a scratchy throat and feeling it was harder to breathe deeply.
I told the nurse immediately, and thankfully, she is one of those rare medical professionals that actually listens to their patients and believes that they know what is going on in their bodies, so she promptly stopped the Remicade drip and gave me a huge dose of Benadryl, some more saline, and then started the drip again slowly, eventually ramping up to full volume. I had no reaction after the big Benadryl dose, and the rest of the treatment went without incident, but round trip, it took about 6 hours.
A 6 hr doctor's appointment - people don't believe me when I tell them that I do this every 8 weeks and that this is so much better than what I used to have to do and I feel so much better than how I used to feel, but it's true. Given how crappy I usually feel, I guess it's hard for them to imagine me with less energy and more pain.
When I got home, the nanny reported that the kids had had a good home/unschooling day. They had their first tutoring session with the new math tutor which lasted 90 minutes for all three together. And then they had spent several hours working on their Mountain Stream art installation in the backyard. They wanted to show me as soon as I got home, so I had them take a video on my phone while I regrouped for a while in my bedroom. I did go out back to see it while it was still daylight, and it looked amazing: rock paths, a mountain, moss, and a running stream they had created by burying the garden hose under the mound of mountain. When they turn the hose on, the waters starts running down the mountain and collects in the lake they dug out down below. I'll have to post a picture in the morning. They were very proud of it and I was proud of them for working independently on it. They had been reminiscing about the elaborate dams and creeks they used to dig out in the back of our Lupine house, which we rented for a year while remodeling, so it's nice they are making a backyard they enjoy more and more each day.
Tonight Toto was in a contrary mood, saying he missed me sooooo much today and asking why was I always sooooo tired. He knows I have Crohn's disease and I tried to explain to him that my medication days take a lot out of me, and that even on my 'good' days, I am more tired than the average person, and certainly more tired than the average 8 year old boy.
I tried using the "spoon" analogy to explain to him about living with a chronic illness, but I'm not sure he got it.
I finally just said that I have to take the medicine to stay alive and to feel like living, and that I think there is more joy - than not - in living.
That life is a gift from God and I'd rather live it without running marathons, or traveling internationally, or writing books, or managing a business, as long as I get to live it and spend time with my little people.
I choose life because as my Dad always says, the alternative isn't very good.
And then seeing that I wasn't going to be able to talk him out of his funk, I said good night and came to bed. Because it's not a sick day if you don't get to spend every possible minute in bed.