Monthly Archives: November 2010

What a Week – From Day 1

I’m back from vacation and ~~~ well it wasn’t really a vacation per se. I used to think a vacation meant sandy beaches or gorgeous scenery or, at the least, extra sleep. But I have a toddler!

Now vacations mean family – and you know, that’s not so bad. Actually, it’s quite nice to get to see so much of my little munchkin and my husband, and the extended family as well.

But here’s how we started off the vacation: we’re in the car on the way to the airport, nearly at the cheapie parking place that we use (I say cheapie in comparison to the airport parking, but it’s still friggin $11 per day. Anyway.)  We’ve just pulled off the highway and the munchkin makes a funny noise. She’d been quiet a while, and suddenly this weird noise. Husband and I say, in unison, “what was that?” In response, munchkin vomits. A lot. All over herself. I’m screaming “ohgodohgodohgod” as I start rolling down the window and picking up the vomit with my fingers and tossing it out the window, now screaming “pullovermoigod pull over!!” At this point she makes the noise again, so what do I do? Of course, I cup my hands and catch the next wave – or as much of it as I can – and start hurling that out the window as well. Like a bunch of clueless sailors who’ve sprung a smelly gross leak.

So. We pull the car over near a warehouse, munchkin gets out and skips happily over to play with a piece of rusty chain, and husband and I begin the process of cleaning as quickly as possible (to avoid missing the airplane) with the small amount of cleaning supplies that we have (half a pack of diaper wipes.) We got munchkin changed, inexplicably played a game of ring around the rosie, and were back on track for a relatively uneventful (albeit smelly) series of flights to the in-laws.

Phew. So that’s how it started.

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Lupus Nose

I remember when I was first diagnosed with Crohn’s, every time something weird was happening to me (dull headache, pain in my side, etc) I wondered if it was because of the Crohn’s. And I remember that confusion was paired with a bit of hopelessness, like, if this IS Crohn’s, well crap, I don’t know what to do about it. I didn’t know anyone with Crohn’s, my doctor’s appointments were whirlwinds, and there really weren’t any other resources for me.

I was starting to feel that same way about Lupus. Over the past few months, even before I was diagnosed, I had this strange …I guess you could call it symptom. My nose hurt. It just felt dry, like on the inside, not my sinuses really, but my nostrils. Weird, right? I couldn’t figure it out. In desperation I put bag balm on my nostrils (amazing stuff by the way…seems to fix just about everything) and it helped make me feel better until it finally went away. I mentioned it to my mom who said it was probably because of the dry weather, and I thought myself that maybe I was having some allergies, since it started around the spring/summer. But then it just kept coming back, and then I was diagnosed with Lupus, and it did say something on the list of Lupus symptoms about nose problems, and then I just sort of forgot about it for a bit.

Then last week it started up again, with a vengeance. My nose just hurt really bad. It was bleeding too. I was doing the bag balm thing. So finally I did what anyone in my position would do – I Googled it.  And I learned nothing. I mean seriously, nothing of value came up. So I went to Technorati.com and started looking for Lupus blogs, to see if I could reach out to others with Lupus. But then I started to doubt myself. I just have drug-induced Lupus. Is that really Lupus, or will they seem me as some sort of poser? And what if no one writes back to me? I started feeling pretty hopeless again.

But then – duh – I remembered about the multitude of chat groups. I went to HealingWell.org and posted my question. Within hours, four people wrote back. Unfortunately none of them had an answer for me in terms of how to make it better, but they were all experiencing the same thing, making me feel less alone in it all. Then I went to another site, Ravelry.com, which is actually a site for crafters, but they have chat groups for just about everything. I received several responses there too, but this time with ideas on what I can do about it. One person suggested anbesol, and another suggested Badger Balm.

Solved? Nope. But I know from Crohn’s that this is all just part of the process. It sucks. But what a different experience it’s been this time around. Rather than no resources, or just having to talk to my doctor, I have thousands of people out there just like me, just one computer away.

I am Thankful for Family

But I am not thankful that we’re all spread out across the country. I am not looking forward to flying with a toddler for Thanksgiving. But I am thankful that I have a family so wonderful that we are ready & willing to fly with a toddler. Is that confusing? Well. I may not be super articulate because most of my brainpower this week has gone into preparing to take said flight, ensuring that the munchkin is as happy (and quiet) as can be on the trip.

First, I set to locate a replacement for her favorite pacifier. We threw it out, because it was getting disgusting. How was I to know that another one would be so hard to find? Imagine my horror when I searched on Amazon for “nuk latex 18 month” and found this:

Currently unavaila…. no…no….nonononono NOOOOOOOOOO! That means discontinued! Omigowd omigowd no this can’t be happening! It’s the only pacifier she really likes! It’s the only thing that keeps her sleeping through the night! NOOOOO!!!

See, you may think I’m being overdramatic but she seriously does know the difference between this pacifier and other very-similar-but-not-exactly-the-same pacifiers. No pulling the wool over this kid’s eyes.

So I next headed over to the mommy version of the black market, eBay. I found a seller who had about 20 of them, and oh yes, I bought them ALL. They shipped yesterday and I pray they get here in time.

I also went on a mission to find books that might keep her occupied. I got a list of her favorites from her daycare teacher, and bought them all, plus a few the woman at the bookstore recommended. Then I realized how heavy all of them are. Holy cow. It’s too bad there’s no such thing as an eReader for toddlers. And you know, there never will be, because their favorite thing to “read” tends to be the touchy-feely books with fur and sparkles.

Anyway.

Image from Crayola.com

My friend Donna also recommended Crayola Mess Free Stow & Go Studio, which I *surprise* purchased immediately. It has markers that only color on the enclosed paper, and it’s all housed in a cute little lap desk. That should buy us 5 minutes at least, right?

Back on the Grid

Geez. I was sick for a while. I spent two days in bed, and then went back to work Friday feeling like I’d risen from the dead. Then this weekend our daughter had a fever for most of Saturday, so it was like sickness just pervaded our house.

She had a rough few nights (which meant of course that we had a rough few nights…luckily my wonderful amazing husband always gets up when we first hear her cry, but the munchkin has been on a bit of a mommy kick, meaning I got up too to help settle her down…) So this morning I’m feeling pretty zonked out. She was up for about an  hour at 3 am and only wanted me to  hold her. It’s strange, I wanted so badly to go back to sleep, and yet I admit I loved the opportunity to hold my little baby girl, especially since she’s getting so big so fast.

Anyway, nothing a little (or a lot) of coffee can’t fix.

So I spoke with Dr. D on Wednesday when I was home sick, to see what he thought of me taking the Humira (he said to just wait until I felt better, which is what I did) and also to ask what he thought of my complement levels being down. Of the complement levels, he echoed Dr. Max and said it’s probably fine, and that I can wait until my next appointment check-in in six months.

Home Sick

I felt sort of gross yesterday, I was in New York for work and just felt sort of slow and weird. I got home late and skipped dinner, and this morning I woke up around 4 am feeling lousy. I can’t believe I have another cold. I’m trying to take it easy, so I’m home today and resting.

I’m supposed to take Humira this week, so I’m going to call Dr. D and ask him what I should do.