My body is an a$$hole.
I have never seen my rheumatologist flummoxed before today. She’s always confident and reassuring and has a plan of defense against my errant immune system. But today it all got to her, and we don’t have a good defense strategy at the moment. It’s a “wait and see if what you’re on works with a little more time” game.
Gastroenterology is more confident still, but she’s newer to this rollercoaster ride with my body, so maybe give her some more time to be broken by it!
I’ve been having major gastrointestinal issues that we’ve been blaming on ulcerative colitis for several years now. I’m on the correct dose of Stelara now for UC, and it should be controlling the symptoms but isn’t. So I’m currently on heavy doses of steroids to try to knock back this flare up. But every time we go down even a little in dose of the prednisone, the symptoms come roaring back with a vengeance.
New players to the game are mouth sores, but are they a sign I actually have Crohn’s disease rather than ulcerative colitis? Or are they from lupus? Or even something else? Damn hard to say. Either way, Stelara and methotrexate and prednisone should be controlling them, but they only go away on the highest doses of prednisone and come back if we drop the dose at all.
Steroids, though? They’re frigging great. They make me want to eat everything in sight (downside) but they make me feel positively human (upside) when they’re working. I have more energy, and less joint pain. So while I need to get off the damn things, I’m also not totally sad I’m on them.
Speaking of joint pain, as my rheumatologist felt my finger joints and I reported that they “really aren’t feeling that bad today,” she looked at me quizzically. Paused. Then said “I think your body is just getting used to being in pain because they feel swollen as heck.” Ah well. I had hoped they were better. But alas!
Anywho, wait and see is the name of the game. I only went up on dose of Stelara about 2 months ago, and we need to control this flare up for a bit to give the new dose a chance to work. If it doesn’t improve soon, we’ll try a new med. I’m told there are more out there that I can try. Because the whole pharmacopeia is fun to experiment with!
SEVEN
My daughter turned seven last week. I’m not ok! She is growing up so fast!
She’s doing amazing. We got her cleared by her orthopedic surgeon to start gymnastics, and she’s head over heels in love with it (see what I did there? Ha!) Seriously, it’s all she wants to do.
The only other thing she wants to do is play outside with the neighbor girl who is about the same age. They play together rain or shine, freezing cold or mosquitoes and sweltering heat. They ride bikes, and play “Frozen” (wherein Anna loses Elsa and calls her name at the top of her lungs over and over again). They play in the swings and build things out of sticks and pine cones. I love that my girl is an outside kid, preferring scraped knees and rain boots to an iPad or television. We go through a lot of bandaids and Bactine, but she’s tough as nails and no injuries deter her. She just gets back up and does another cartwheel in the gravel driveway. And then another.
We have noticed an uptick in moments of ‘tude with this age. She’s a fiercely independent kid anyway, and somehow developmentally she thinks she can do anything and everything because of her advanced age, except for the fact that her mean parents hold her back from, you know, lighting herself on fire by accident, or staying up until midnight.
She’s a good kid overall, but man. There have had to have been some stern moments lately on my part and that always leaves me wondering if I’m doing things the right way. Connection over correction and all that.
Anyone else find freshly minted seven-year-olds a challenge?
Kitty!
I haven’t talked much about our cats in a while. Not long ago we had 5 cats, including ones ages 19, 18, 17, and 15, plus one young ‘un age 4 (a ginger girl named Astrid).
We lost the entirety of the geriatric squad in about a year. It was devastating and really hard on Sprout.
Then a number of months ago I added kitten Pierre to the mix. He’s an absolute hoot of a cat. He was bottle fed by a friend of mine, and no one has ever been mean to him so he has tons of confidence. He’s affectionate and playful. He’s roughly 10 months old now.
And he’s been bored. He’s spent too much time literally gnawing on poor Astrid.
So on Sunday we added another kitten to the mix to provide a friend for Pierre and some relief for Astrid.
The grownups didn’t sleep last night because 4-month-old Louis wanted reassuring pets all night long, about once an hour. He’d come up to me purring and meowing, then after some attention he’d start biting my moving fingers. Good times at 2 am. Plus Pierre is still unsure about Louis and would occasionally forget about him, jump on the bed to get his own attention, and bump into unsuspecting Louis which would shock a hiss out of Pierre. It was absurd. And cute. Thank god for the cute part!
Anywho, it’s positively lovely to have a house full of young playful cat and kitten energy. It coincides with the spring-ish weather and is putting folks in a good mood and making everyone laugh. So here’s to spring, and to kittens, and to thriving kids!
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