Wednesday, December 08, 2010

Notes From a House Frau II

Portrait of a Baby Whisperer baby, not. We tried the Baby Whisperer "EASY" program for two days and it made our RRBB the most miserable he'd ever been in his short life. He had two terrible nights, two awful days, and the program just didn't work for us. I also made myself insane consulting the book and trying umpteen different things because I thought I needed to fix something that wasn't broken. Anyway, we're back to normal now, and back to our actual easy baby. Sleeping, eating, waking, and doing quite well at night. My lesson for the day, not every book has the solution, and you don't need to listen to every one just because it's written down. You can make yourself crazy trying to do the right thing if only to stop listening to your instincts, which aren't always wrong, even if they are inexperienced.

I was at the kidney doctor this morning, and it broke my heart. The disease is going in the wrong direction -- my tests are rising when they should be falling, and the meds aren't controlling the Wegener's in the way they were supposed to. I see my SFDD next week and they'll probably suggest alternative treatment, which means no more breastfeeding. But to let things continue in this way means I'd be on dialysis in six months, and I can't lose my kidneys.

It's been so long of dealing with the disease, and being sad and frustrated is par for the course these last few weeks. I'm trying hard to find the life lessons. To see the silver lining in the cloud; to not get disparaged or angry or resentful of the disease and my broken body. Feeling scared has pervaded my days, I don't want to get sicker, I want to get better, so desperately, but I also have to be patient. Funnily enough, the doctor today described my pregnancy as one of the hardest she's ever seen. When I was in it, it was only rough for the last few weeks -- for the most part, it went exceptionally well considering the circumstances, and all of that is how our beautiful RRBB managed to be so healthy by the time he landed in the world.

So, I've spent today being sad, frustrated, and upset -- all in equal measure. Yet, there's something about my family, my RRHB and my RRBB, that I find utterly delightful. Whether it's how we spend the mornings, or how lovely the baby is at 2 AM when he's just about to fall asleep, and if this is all I can do right now, be here, with my family, because that's all I have energy for, that's all the disease will allow, then I need to be calm and careful. Take it day by day and understand that I will get better, it'll just take a long, long time. Yesterday, I did 10 sit ups. Today, I'm going to do 11. And that's how I'm going to do it, one small change by one small change, take the new drugs, deal with the side effects, and find the strength to be the best house frau I can possibly be under the circumstances.


sassymonkey said...

I'm so sorry. That has to be so discouraging. I've pinged my friend with kidney issues and I'll get back to you with any tips that she might have for kidneys.

Heather said...

I wanted to leave an uplifting comment, but I don't know what to say. I feel for you that you are having such a difficult time. Know that i am sending good vibes your direction every day. If you have to stop nursing so that you can get better, then search out a good formula and do it. Most important right now is your health.
You should be feeling those good vibes any second now. See, I told you they were on the way, you just smiled.