Gah. I’m totally failing this NaBloWriMo thing this year. Lots has happened. Some stuff is just so big that covering it needs more focus and oomph than I have right now… Some of the things now seem to inconsequential to cover, and writing about them before writing about the big things seems almost disrespectful of the big things… Jiminy freaking crickets. I don’t even want to be running around in my own head this week. It looks like an episode of Hoarders in here… Shot day today (Enbrel) and official day after shot day is tomorrow (stay in bed, watch TV, stick hands and elbows in paraffin, nice hot packs, cold packs, and making lists of
shit shidoobi I need to deal with when I’m not in the middle of shot day or the day after)…
I’ll be in touch.
Thanks for hanging in there, dear reader(s?) :-)
The snot factory, that is.
Poor kiddo has a nasty cold and a temperature. Needless to say, nothing is getting done- no rest, no work, NOTHING.
I’m amazed his voice hasn’t given out as he had trouble sleeping last night due to the very sad passing of a classroom pet (Finchy, the Zebra Finch) over the weekend. He has dealt with death before, but had never seen something dead, at least as far back as he can remember. I went in to take his temperature and he woke up and wanted to snuggle. He looked like he was trying to cry, but he said he couldn’t. I told him that the tears would come when he was ready and they don’t always show up when you think they will. We sat up for a few hours eating apple wedges and toast and warm milk and then he snuggled in for approximately 4 hours of sleep. Of course, he got me right up with tales of phlegm. At some point baldguy got up, got kiddo settled with his listening therapy/headphones, and then went back to bed. I was standing in the kitchen like “hello! where do you think you are going?”. But it was too early to argue, so I made a loaf of oatmeal-brown sugar in the bread machine and left tea in the microwave (again).
Anyway, I finally got the approval for Cimzia! Hopefully tomorrow I will be able to start. Fingers metaphorically crossed. I’m also design-geek elated to see the OXO Good Grips syringes that they are dispensed in. I’m not so excited by the copay but I don’t mind the $150 so much when I see that insurance is (so far) picking up the rest of the $3000+/first month tab. Of course, $150 is still a pile of money, but that can be charged (as much as I hate to do it) whereas the $3000+ would put the hope that this treatment will work on my RA symptoms completely out of reach.
I won’t put all of my hope on this treatment, but the chance that I could feel better is worth a shot (or 2 shots the first week, and in two weeks 2 more…)
Today the boys and I assembled most of a Toy Story lego train set and it’s only in fine motor work that I realize how bad things have gotten with my hands. I can type, no problem. But pincer grasping and Legos are definitely off the table (step carefully! those things hurt like hell!) until I regain some dexterity. Or until they start making cooler Duplo sets as those seem like they are just the right size for these old hands.
Other than that… No new adventures to share right now, but a new day begins in a few hours.
I have noticed that Alex’s focus and ability to listen and hear us has been not quite as powerful as it was the first week we had him off the G6PD trigger foods… That week showed a dramatic difference, as did some of the 2nd week…
This evening I found out that he has been eating the snacks at school that they give all of the kids (even though we have been reminding him on a daily basis to eat the snack we put in his bag). Today it was blueberry muffins (most commercial muffins contain soy or soy derivatives and blueberries are an off limits food).
Long discussion took place… Baldguy will talk to the teachers in the morning (again).
Long day. I have been sleeping all of this week. So exhausted. I’m happy that blogging allows me to start a post and finish it as I can. A word here, a word there… No time or energy constraints (even on the days where a slow one word at a time is pushing it, far from my usual 120wpm)…. No pressure.
More tomorrow… Methotrexate day…. Though the day of is usually fine. Thursday through Tuesday are worrying me, as I attempt to stick to my NaBloWriMo pledge and keep kid in bread (thank goodness for the bread machine or all of the time I’m knocked out by this med would have him living on shredded cheese and cheerios). It’s hard to carve out a life when you’ve only got max 16 hours a week of functioning, but that isn’t a choice, it is what it is.
Today I was talking to Jeff about some spine info I found on the internet. I haven’t been googling about my shoulder, and my arm being numb and shaky. I was going to do that after the MRI and it has gotten somewhat intermittant rather than constant and constantly worsening… But it’s still there…
And my legs are weak.
So I know something is going on. So I googled. I read aloud to Jeff.
And Alex heard me.
He comes in to the bedroom, smiles and me and
Slams my left knee cap with his solid hardwood toy tool bench hammer.
Shocked the daylights out of me.
He told me “like at the doctors”
I replied “they use a rubber hammer!”
Jeff came to see what the fuss was about and I lost it. I just cried and cried and cried, while I really wanted to laugh but the tears just kept coming. It was funny, by itself it’s funny…..But my body does not agree… My back hurts, it feels like a stack of cement blocks grinding against each other, whittling themselves down to nothing. It’s not just pain, it’s that nails on chalkboard, things not moving right feeling that won’t quit. My right arm isn’t working right, it’s numb or all pins and needles and the intention tremor is worse. And now my legs feel like I just ran a marathon and went on a bar crawl- sore and rubbery, wobbly.
Kiddo feels so bad about the hammer thing. He was trying to help. He is always trying to help me feel better. And that makes me feel so terrible. I want him to focus on being a kid, I want to be able to enjoy his childhood and his life and I really want to participate.
I hope this is just some temporary swelling thing and nothing that requires anything else to drag the last of my energy and my strength away from me.
Will update soon…