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Sunday, December 12, 2010

Update

Part of me wants to delete the last post, but I know I shouldn't. We all have moments of weakness, and if nothing else I hope this blog is at least real.


The girls saw the rheumatologist again on Friday and there was good news and bad news. Mostly bad news. The good news is that sarcoidosis is off the table - it's just Crohn's. The bad news is that both Harper and Nora have arthritis and it's getting progressively worse. We will start them on maloxicam this week (anti-inflammatory) and see how things go. They both see the rheumatologist again in a month, and if things haven't gotten significantly better they will need to do a dose of prednisone and start on methotrexate. The good thing about methotrexate is that in addition to treating arthritis, it is also used for Crohn's and colitis. The bad things are that it is a weekly injection that I have to do (Harper is terrified of needles), and it's chemo. Yeah, I realize it is a tiny, minuscule fraction of the dose that they would use for cancer, but it's still chemo. But if it will do double duty and take the tummy and joint pain away from both of my girls, I will love it. As made obvious in my last post, I am tired of them constantly being in pain.

As for the Crohn's part of the Crohn's (as opposed to the arthritis part of the Crohn's), the girls' GI doc spoke with their rheumatologist on Friday and he will get back to me this week about where we go from here. We had previously decided to re-scope both girls at their one year mark, and that has come for both of them. With the disease obviously progressing, I'm sure we will have to go ahead with that plan.

The great news is that both girls' CBC is still normal - neither have been anemic for a few months now! Yay!

Tuesday, December 7, 2010

Selfishness

This post is going to seem really selfish. I'm just warning you in advance. Sometimes you just have to get it off your chest and then move on.


First off, no matter what I have to deal with while taking care of my two kids with Crohn's, it's no where near as bad as having Crohn's. I get that. But can I just say that I am so tired of it? There are lots of things I'm really grateful for - good doctors, decent insurance, medicine that (sometimes) takes my babies' pain away, etc. But today I'm going to vent about the crap because it's building up and I gotta dump it somewhere.

It's been a little over a year since Nora was diagnosed and in that time I have racked up thousands upon thousands of dollars in medical bills. Pediatric colonoscopies are really expensive. Even if Nora let me sleep through the night I'm pretty sure I wouldn't be able to as I'd be too busy thinking of all the money that is going to the damn anaesthesiologist instead of a down payment for a house that will actually fit all my kids. I am tired of getting sent to collections for bills that I've already paid, I'm tired of spending my free time hauling my kids to the hospital for blood draws instead of taking them to the park. I'm tired of being so tired that I actually considered buying Depends so I don't have to get up to go to the bathroom. But most of all, I'm tired of watching my kids go through the crap they have to go to. I'm tired of hearing them scream in pain and I'm tired of not being able to do anything about it.

Ok, thanks for letting me vent - back to being a mom.