Crohnie Baloney

On Friday I had my follow-up appointment with the digestive doc to go over the results from my colonoscopy and talk about medication moving forward. It confirmed that I do have Crohn’s Disease (they take biopsies to confirm it). He said it was more on the moderate side (as opposed to a mild or severe case). So, that’s that.

Last of the grapes from the arborIn terms of treatment, I’m tapering off of taking prednisone (Yay! Especially since it was starting to cause acne.) and I am now taking something called 6-MP. Here is a page from the CCFA that explains maintenance treatments more fully. I can take it orally, once a day, so that’s pretty easy. Unfortunately, I’ll have to get regular bloodwork done to make sure it isn’t dropping my white blood cell count. But at the moment, it’s certainly easier than Remicade infusions or injecting Humira. So fingers crossed that this works well!

I’m curious about how I will feel after I’m off of the prednisone. I still don’t really have “normal” things going on in the bathroom, but I’m pretty sure the antibiotic I just finished had a lot to do with that. It seems like things have been improving since I stopped taking that a few days ago. I’m just curious what the new normal will be. Will the arthritis and mouth sores stay away once the prednisone is gone? And what does or doesn’t cause a flare-up? All things to think about.

Trip

Old School

The Lady’s “new school” was closed on Monday, so she and I decided to take a trip to go visit friends in Syracuse. First, we stopped at her “old school” to drop off some fudge to her old teacher, Erin, and say hi to old friends. I was surprised that some of them recognized her and, just like that, they were all off and running like she had never left. And yes, these photos are all blurry for a reason since I didn’t want to plaster these kids all over the interwebs without their parents knowing I had taken photos.

Old School 2

Afterwards, we met up with our good friends Steph and Charlie for some lunch and a trip to Onondaga Lake Park where some hard core sand-playing took place. Luckily no volleyball teams came by to steal the big sandbox away from us.

Onondaga Lake ParkCecilia has also been very interested in all of the bits of electronics hanging around the house and always asks to go in “Daddy’s Other Room” to check things out. She loves singing songs and exploring the sounds that the microphone makes when hooked up to a guitar pedal.

Doing ElectronicsOver the weekend, there was a chicken bbq at the fish and game club, so everyone came over and we had take-out dinners. Someone didn’t want to sit down at first, so I let her go off and read books by herself for awhile, but then she decided to run in and “surprise” us and have some dinner. Afterwards, she wanted to put on her Cinderella dress and dance around. We ended up outside when my uncle and his grandson showed up: apparently my aunt had put my name in for a raffle at the bbq and I won a large mum plant and some pumpkins! We played outside for awhile and Ceciliarella decided to “paint” the side of the garage with weeds and enlist Joe’s help.

PaintingAll in all, a good long weekend.

Safari!

Cecilia and my mom and I went on a little adventure on Saturday as we visited Hidden Valley Outdoors in West Winfield, NY. I wish I had brought my actual camera with me to capture The Lady’s reactions a bit more, but perhaps next time!

My mom had heard about this place from a co-worker and as we found, it was the perfect place for this particular 2.75 year old. Of course, this particular 2.75 year old fell asleep in the car on the way there as she had not taken a nap prior, but after waking up, we enjoyed a “safari” tour, offroading in a utility vehicle to get up close to bison, rams, yaks, goats, emu, an ostrich, horses and cows, and a number of other animals. Cecilia LOVED this – she got to feed them crackers and touch some of the animals and wave to them and GO FAST in the XRT vehicle and was just enthralled the whole time. She kept looking up at me from her seat with this look on her face like “this is the greatest moment of my life.”

We also picked out a pumpkin from the pumpkin patch and went in the corn maze, which was also Big Fun as Curious George had once gone in a corn maze. We didn’t have a map like he did, but Cecilia navigated us through quite a way until we hit a little muddy patch and I made some maneuvers to get us turned back around and going back out to the entrance. And they have BOUNCY HOUSES. Do I really need to expand upon the desirability of that feature to a small child?

We really enjoyed ourselves there and had no idea that it existed prior to this summer. I’m sure we’ll be back as they also have fishing and camping and sleigh rides in the winter. The people running it were friendly and it’s pretty affordable too (especially if you have a child 3 or under – FREE!).

Joe was back in Syracuse, clearing out some stuff from the shed at the old house (anyone want to buy our house in Syracuse? please? please?), so we have to go back at least one more time.

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Here are some things I’ve found around the onlines recently:

  • Pasta with Cauliflower – I added crushed red pepper and parmesan/romano cheese to Bittman’s recipe, which is not unlike recipes that other members of my family have made (also with the addition of pepper and cheese, because why wouldn’t you add those things)?
  • My Star Trek Quiet Book – This makes me want to cut out felt.
  • Design Sponge: Sofa Made From Old Doors – I almost jumped in the car to run to a salvage place upon seeing this. Perhaps I will make a door sofa and door chair someday to replace the ones in the living room.

Robot Monster

Joe and I switched cars a few weeks ago, much to Cecilia’s dismay. “My” car was a 2002 Honda CR-V and Joe’s car was a 1999 VW Passat. She has since adjusted (“Mommy, WHY are you driving Daddy’s car???) and I have enjoyed the heated seats in the Passat on the past few chilly mornings (although there are a number of idiosyncrasies that I still have to get used to). The reason for the exchange was that the Honda has many fewer miles on it and Joe drives much more than I do for work, so why not use that car up a little more and give the Passat (aka the replacement car after losing our other CR-V in The Great Eastwood Flooding of 2011) a little rest.

“Yes, but what about your colonoscopy?”

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Oh yes. On Wednesday, I finally went it for my colonoscopy/gastroscopy. The prep wasn’t super-fun, but it could have been worse. I mean, I had been having diarrhea problems anyway, so what’s new, right? I did throw up once near the end of the prep, most likely just due to the vast amounts of sugary liquid in my empty stomach. However, I would gladly choose the laxatives/Gatorade route than some of the other preps that apparently taste worse. The procedure itself was nothing. I went in, got hooked up to an IV, waited around, got carted into a procedure room, felt a little woozy and turned on my side and next thing I knew I was waking up from a nice nap.

However, the results of it all appear to be a diagnosis of Crohn’s disease. They found ulcerations and whatnot in my intestines in the right places for it and the other symptoms I’ve had (mouth sores/ulcers, fatigue, arthritis in ankles, etc.) point to it, too. I’ve tried to read up a bit about it online, but I feel like lots of the stories I read are about people who have had much worse symptoms than I have had, as bad as things were this summer. Of course, I’ve been hopped up on prednisone for a month now, so I don’t know what things would be like if I weren’t on that.

I have an appointment in two weeks to follow up with my GI doc, so we’ll see what the next steps are in terms of medicine for maintenance and such. I kind of want to go off the prednisone (which got bumped up in dosage this week) and see what happens, but I guess I’m just not ready to be A Person With A Condition just yet. Now I have all kinds of pills to take when I was hard-pressed to remember to take a multivitamin in the past. And I get to have B12 shots now too, which just seems like a very 1960s calisthenics kind of thing to do. FOR HEALTHFULNESS AND VIM!

The final health note for now is that the migraines still seem to be at bay. Does Crohn’s cure migraines? Maybe I’m on to something here… Although I would bet that it’s all inflammation-related somehow. WHO KNOWS?

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In other news, I’ve been able to catch up a bit with my work, which makes clients happy. I still feel like I have no time to do anything, but I’ve been able to stay up later! I just wish I could plan my daytime hours better to take advantage of meeting with people and a few other opportunities that require more daytime hours.

I have a few more entries in the pipe as I don’t want to overload each one with different topics, but I thought I should get this posted to show that I DO plan on keeping this site updated!

Stink

There comes a point where the nice smell that you use to eliminate the bad smell becomes intertwined in your brain so that you smell the nice smell and think “cat poop”.

kittiesWhen we first moved in here, I had put the litterbox in the “office room”, however it soon seemed to make more sense to put it in the area where the little steps are by the sliding door in the kitchen (descriptions that, of course, mean nothing to someone who hasn’t seen the inside of this house). And then one of them decided to just keep pooping where the box was. That was a fun discovery. I started keeping the door to the room closed, though, and I think we’ve finally moved past that difficult time. I still close the door, but I let them come in the room now and no one has tried to poop (and the area where they, and by they I mean Brand O, I’m pretty sure, was right near my feet, so I would NOTICE). Suffice it to say, though, that I have thoroughly cleaned the area. But now I just expect to find a small pile of poop waiting for me under the desk and I expect to smell it. Time for a new candle or something in that room to introduce a new, non-cat-poop-memory-tainted smell.

My mom is going to be hosting The Lady for an overnight tomorrow. This means that I need to be Productive in the meantime. I need to try to finish up some freelance projects that have been lingering thanks to the Summer of Falling Apart and the bathrooms should probably get a deep-cleaning. And laundry and grocery shopping. And corralling the spread of toddlerania for at least a few moments.

I also need to brainstorm soon about how I’m approaching my business going forward. Things feel all a-jumble right now. In theory, I should have more time to devote to MyWork, but in practice it doesn’t feel that way yet, which I think is due to the flexible nature of my WorkWork. Flexible is good, but it also means that I don’t always have the same days/times off during the week and it’s hard to plan ahead, especially for things that need to be done during regular business hours. And I’d be lying if I didn’t admit to missing some of my regular Syracuse “remote office” haunts that helped to define the MyWork time more fully. There’s another post in here about how I wish I could live in about five different places simultaneously.