Wednesday Infusion Day

Tomorrow I'm starting a new treatment in the hopes of improving the symptoms of a couple of my autoimmune diseases, specifically w Rheumatoid Arthritis and Ankylosinwg Spondylitis.

I have been self-injecting Enbrel weekly since May, and while it has helped (and I had not realized how much it helped until I stopped, natch) it just didn't seem to help "enough". So, tomorrow I start infusion-based therapy with another biologic, a drug called Remicade, which is delivered via IV and can take anywhere from three to eight hours to administer. I know!

I'm really nervous. I'm terrified of some of the side effects (heaviness on my chest? Aiiie), "serum sickness", and of course my constant fear about liver damage and dying from a common cold. :P That said, I'm also hopeful, even as I'm afraid to be too hopeful. 2012 has been the worst ever for me as disease-related pain is concerned, and I am just so ready for the pain to be over. Or, if not over, at least managed.

I'm lucky to have a friend with the same doctor and same treatment, so I am armed with some pretty good tips for staying comfortable: I'm bringing a blanket, wearing short sleeves, I have things to do in case I end up awake for the whole thing (I'm staying up late tonight to try to sleep through the infusion), and more. I would never have guessed, so I'm really grateful to her for sharing.

I am, as you probably could have guessed, considering liveblogging the experience, but I'll have to wait and see how I feel. I'll keep you posted.

Monte! Cristo! Sandwiches!

On birthdays, the person whose birth is being celebrated gets to choose what dinner shall be. It can be anything: Dining out, take out, fast food, or something I cook. This year, CJ chose mom-made Monte Cristo sandwiches.

Stop right there, because I know what you're thinking. Entire sandwiches coated in egg, deep fried in oil, and then served with sugar and a side of jam? Have the crash cart on standby! Jesus take the wheel! Somebody call FLOTUS! But all things in moderation, kids. I make these maybe once every couple of years. There's also this thing about how three years ago, when last I made these, I lifted one out of the pan and hot oil ran down the inside of the tongs into my hand. Hot oil. My hand. That kind of thing will stay with you.

Anyway. I didn't take a lot of photos, but I did snap a couple of progress photos to share the recipe with you. I'm pretty sure I learned how to make these from my mom.

Monte! Cristo! Sandwiches!

• Pepperidge Farm Buttermilk White bread
• Sliced Swiss cheese
• Thin-sliced honey ham
• Thin-sliced turkey (I used to buy Boar's Head expensive deli meats, but you know what? Oscar Mayer works great.)
• Eggs (It always ends up needing more than I thought. I used 10, should have used 12.)
• Oil for frying
• Seedless red raspberry jam
• Powdered sugar
• Toothpicks
• Candy thermometer

Assemble your sandwiches! One slice of bread. One slice of cheese. Five slices of ham. Five slices of turkey. One more slice of cheese. One more slice of bread. What you have now looks a lot like a boring old sandwich! But wait, there's more!

Make two diagonal cuts across the sandwich so that you have four triangles. Now: Three toothpicks per triangle. No more! No less!

Crack your eggs into a bowl, and beat them well. Pour a few inches of oil into your pan (use one with high sides, please), affix your candy thermometer, and set about heating your oil to 360 degrees.

Checklist: Is your oil hot? Is the bowl of beaten egg directly next to it but not on the heat? Is your pile o'sandwiches directly next to the egg? Congratulations! Let's cook our sandwiches!

Add a sandwich to the egg, turn it all around to coat, drip off the excess, and carefully place it in the hot oil. The size of my pot allows me to cook an entire sandwich (four triangles) without letting the oil drop below 350, but ymmv.

Turn them once (I like to use tongs. Yes, still.) and fry until you've achieved allover GBD. Remove to whatever your drying rig may be (I put down a cutting board, cover it with a kitchen towel, and cover the towel with a layer of paper towels. People smarter than me use a rack over newspaper on a sheet pan.) and rest until they are no longer too hot to handle (but not too cold to hold).

Now it's time to serve. Arrange your sandwiches on a plate, and then dust them with powdered sugar. Add a side of raspberry jam (I like to use a monkey dish (as pictured) but I won't tell anyone if you want to just plop some on the plate.

Now, recite the following to each diner as they receive their plate:

There are three toothpicks in every sandwich. Three. No more. No less. Count each toothpick as you remove it, verifying that there are indeed three toothpicks per triangle. Not more. Not less. We will not be going to the emergency room tonight because you have impaled the roof of your mouth on a Toothpick of Carelessness. Understand? Good. Enjoy.

Lunch and Two Snacks?

I need ideas.

One of my children will be attending a fantastic day camp this summer - the director assured me that the children always go home "tired and dirty at the end of each day". Which: PERFECT.

This camp, however, does not feed kids. There is no cafeteria. They require that each camper pack a lunch and two snacks every single day. So, basically, any food that the kids eat has to be prepared and sent from home. For 8 weeks.

Help. Oh, help.

I purchased one of those many-compartmented lunch cooler thing doohickey-mabobbers yesterday, so we have the containment unit handled. I will soon be purchasing some of those cold-brick things to include.

But what to pack? Please (oh please!) share some of your household's lunch-packing standards in the comments. Thank you!

He Turns The Seasons Around, And So She Changes Her Gown

Ever get the sensation the time is passing you by much more quickly than previously authorized by you: The boss, queen, captain, lord, and master of your particular domain?

Me too.

I've been doing stuff, and stuff, but mostly I am completely enslaved to: My kids, their lives and commitments and schedules; then there's Tim, and his life and commitments and schedule, and lately the same could even be said of the cats, and then of course mine own self; my job and commitments and such. Oh, you're still stuck on that part back there about how I'm a slave to the lives of THE CATS? Sad, I know: It's something I never thought I'd find myself saying, like, "hey, oh, me? Well I'm spending a great deal of time making sure my cats get to their veterinary appointments, and giving the one her medicine, and making sure to keep her contained, and OY the trouble with that abscessed anonymous-animal bite, would you believe that anonymous-animal gave her the Feline Leukemia? But it isn't even Leukemia at all, but rather that's a misnomer, and..."

Sad. So sad. At my girl Mandy's birthday party way the hell over yonder in Prosperity, SC, I found myself making polite dinner conversation with a friend-of-a-friend (who I'm pretty sure wanted to be way more than friend-of-a-friend with Tracy's rad hotness; we blame the $20 beer), and I had so much to say: About my kids and my cats. At least Tracy was there with us, and whenever Tracy is present, fun is had. Ave Maria Her Holy Hilariousness was there too, but way down at the other end of the table, so all I could really do was send her two texts from six feet away (which may or may not have had anything to do with ampalamps).

Speaking of birthdays, as of the last posting, you may recall, I was busy surviving my 36th birthday. As it turns out, my 36th birthday was the best birthday I've ever had (even beating out that trip to Vegas for my 21st (sorry mom), and that time I got my first tattoo) . It just so happens that my birthday was awesometastical - even though at the outset I did not believe it would be so: First, the Snowpocalypse. Our decennial snowfall with accumulation ("SnOMG, it's sticking!") happened to occur during the afternoon of my actual birthday, nearly ruining the carefully planned surprise celebration. Second, I was sick as a something that is really super sick; had been (and would continue to be) for days. Let's just say getting through the evening required two Aleve, three Imodium, and a bargain with the Universe. Third: I was having a giant cow over The Getting Old.

As it turned out, none of that even mattered: Tim and Aaron wore shirts with actual collars (and jackets, even!), T-dawg sucked it up into Spanx, and I wore a dress. We went to Hennessy's; I had a great meal (I spoon-tapped that crème brûlée for ages before finally eating it), great company, and utterly astonishing birthday presents. Three weeks later, I'm still completely gobsmacked over the presents I received during dinner and then the eventual party.

Aaron even chauffeured, and when we returned home he drove the car into the church lot and we did a few hilarious doughnuts in the snow.

Birthday Awesome: 1,000,000

Plague: 1

Snowmaggedon: 0

Water: Meh

"Woo hoo!", I thought to myself this morning, "I can get a head start!"

That was during my morning commute, when I realized Tim had packed a bottle of water in my lunch. I finished it before arriving at work, all pleased with myself for getting that one out of the way early on. And now, I find myself mid-afternoon, struggling to get through the second bottle.

My daily goal is to consume four of these aforementioned bottles, because that's what They recommend. That's what They say is good for me. Yep, this is what passes as a new year's resolution in me-land: "Maybe I should drink something other than coffee, cream soda, and red wine, once in awhile? I don't even remember the last time I drank plain water... Let's see how that goes..."

So here I am.

Every day, I struggle to choke down four 16.9 ounce bottles of water, and every day I find myself wondering: Why the hell is this so hard?

Aren't we human animals something like 60% water? Isn't this what we're meant to drink? Supposed to drink? And then I force myself to chug down some more. Frankly, it's annoying. I'm constantly filling and refilling bottles, I'm running to the bathroom all the time, I don't feel any different than I did before, and I'm annoyed with having yet another item on my To Do list. Oh yes, I am that petty:

Don't even talk to me about lemon wedges, or flavor packets, or Special K Protein Water mix. Those are all great ideas, in theory, (and "everything works in theory", which always makes me think of John Cash's old .plan, or maybe it was his .sig? Anyway....). In reality, to make use of such items I have to remember that I need to purchase said items, and then execute the purchasing of said items, and remember to pack them along with me, and then... the hardest of all... remember to use said items. I just don't have the spare brain power to do it. So, plain water, I thought, I can handle. I have empty bottles, and there's a water fountain pretty much right outside my office door.

And yet, here I am.

Still on bottle two.

As Regards Mom

I figured I'd say some things that are more than 140 characters long about what's going on with my mother. As you have already brilliantly deduced based upon my crafty reference to "140 characters" right then, I've been making updates regarding her status via my Twitter accounts (here (approval needed) or here (public access)), which auto-updates my status on Facebook. It's easier for me than having to actually talk about it. I know that seems weird, or maybe crass or something, but it is really helpful for me to not have to repeat what's going on with my mom over and over and over again every time I talk to someone. It is especially hard for me when I get asked what's wrong with her, or what happened.

It's hard to try to explain. Fact is, we're not really sure.

To sum up, my mom is still in the hospital - it's been about six weeks, now. There has been no Dr. Houseish million-mile stare moment, where a diagnosis clicked and we were then informed about what's wrong with her. She just... got sick. First with some not-the-flu virus thing, and then she got pneumonia, and then she just got sicker and sicker, and they don't really know what or why or how, just that she's sick. Diagnoses have come out of that, like ARDS, but those aren't the root cause. She was intubated and on a ventilator for nearly three weeks, she's had collapsed lungs, two tracheotomies, multiple chest tubes, a lot of other tests and tubes and scans, she almost died a lot, and she is all the way across the country from me, in Oregon.

I feel like I'm failing at daughter-hood, somehow. I feel like I'm failing me-hood somehow, because my "job" in this family is pretty much to show up and be the hard-ass caretaker voice of reason, and I'm not doing it. I know that there's nothing to do, here, but... still. My stepdad, Jeff, sends me updates every day, sometimes multiple times a day, via txt. I don't always respond, because there's only so many ways I can say "wow" or "omg" or "but do they think it's getting worse?" or "thanks for letting me know". Also, it's just hard. What do you even say to your parent when he tells you your other parent is pulling out her feeding tube repeatedly? And then when I don't respond: Fail, again.

It's important to point out that these aren't anyone's standards but mine that I'm failing. Nobody is telling me I suck for not doing more, nobody is complaining that I'm not doing what I should. Nobody, except my outta-whack internal monologue.

The fact of the matter, though, is that my two youngest siblings aren't able to do a whole lot to help, and they're local. My next youngest sibling is in Canada. Mostly, Jeff is on his own with this. He's taking care of their household and dogs, he's taking care of some teenage girl with cancer who moved into their house and their lives, he's taking care of my mom's mother in at least some capacity (thankfully, she's in an assisted living community), he's spending pretty much every possible moment at the hospital with my mother, and somehow, some way, he's having to take care of himself, too.

It's all I can do not to explode with worry, or mortar up some good old-fashioned emotional walls, or... something. I don't know. But I'm fighting this nasty internal battle about what I should do that I'm not doing, and then why I can't do those things, and hey, when was the last time the floor got vacuumed, anyway? Because I can't drop everything and run to Oregon, and it wouldn't do any good if I did. I can't make this go faster, I can't make her better, I can't fix any of this, and fixing is what I do.

Sometimes I worry that she's going to get better and be her old self again, and she's going to check Facebook one day and be "apocalyptically cross" that we've been talking about what's going on with her. And then I worry that I won't have to worry about that at all. Fancy tricks these brains play, no?

The good news is, it looks like she's finally turning the corner and on her way to getting better. She's having periods of consciousness, and the doctors have installed some valve-majiggy to her trach tube which allows her to speak. So far she's asked how long she's been in the hospital (she thought two months), and this morning she insisted that my stepdad... call the police. Baby steps? I guess.

So, thanks, you guys. Thanks for taking my 140 character piecemeal bits of information and telling me that you're keeping my mom in your thoughts. Thanks for checking in, thanks for showing me that you care, and thanks for still being there as this goes on and on, and on.