Done With Treatments

I'm having trouble focusing on my blog lately. A few months ago blogging about painful issues sent me into a tailspin. I'm doing lots better, but still can't seem to focus on blogging very much. Mostly I stay pretty busy with my daughter. She was diagnosed with cystic fibrosis when she was a year old.

Almost all people with cystic fibrosis have to have something called an annual "tune up". A "tune up" is an annual treatment consisting of two weeks of IV antibiotics. A bronchoscopy is performed and mucous removed from the lungs. The mucous is tested to determine which antibiotics will be used. My daughter's mucous cultures showed the usual pseudomonas, but she also had MRSA in her lungs. It was decided that the MRSA would be treated orally with a medication so expensive that it had to be preapproved by our insurance company. Our co-pay was $50, but the med was nearly $2,000. So many of her meds are in that price range. Thank God we have insurance.

Lizzy went into the hospital early on a Tuesday morning and ended up having to stay in until Saturday. They couldn't get her picc line during her bronchoscopy because of scar tissue from past picc lines. Later in the week she was put to sleep a second time for this procedure. The second time they used x-ray images to help get it in. Thank God they got it in and we finally got to go home to finish the treatments. Her dad and I do the treatments ourselves and have become quite good "nurses" over the years.

The picc line came out a week ago and we are done with IVs for another year...unless she gets sick. She actually had her picc line in for her first day back in school. She was pretty much ok with that. Most of the kids know about it and don't treat her any differently because of it. She took her last pill for the MRSA night before last. Things should get back to normal now. Normal for her is a big bag of daily meds, breathing treatments and physical therapy treatments, but we are used to it.

We are used to it, but if you've had a child with a disease you understand the physical, spiritual and emotional toll these things take on the child and their parents. My daughter goes through a lot. She looks fine and healthy most of the time, but most folks have no idea what she goes through. It hurts very deeply to see your child suffer and to know that that suffering will never end unless a real miracle happens. Anyhow, I've been busy with her treatments and simply emotionally drained. Blogging about my issues just isn't up there on the priority list when she needs me. So, I'm retracting my once a month posting goal.

I don't know how often I'll be posting. I want my blog to serve me. I don't want to serve it. Right now I need to focus on some projects. Our house is small, old, in disrepair and messy. I want to work on cleaning things up around here. I've never been a very materialistic person, but lately I have been yearning for a bigger nicer house. I'd love to have a real laundry room and an all purpose room for things like crafting. If I get a better house or not depends upon this one selling. Right now, it might sell at a loss. We've been so busy caring for our daughter the last few years and just surviving this cursed disease that we have totally let the place go.

We seem to stay in survival mode...emotionally and financially. I have always fought mental illness, but fighting for your child's life brings on a whole different level of depression, mental, emotional and spiritual fatigue. And with CF there is no remission, no cure. It goes on and on and on and on. A disease like CF eats up thousands upon thousands of dollars each year, especially when there is a hospital stay. I've decided that I want to try harder to help with finances. My dear husband hasn't asked me to help, I just want to.

I have an Etsy shop where I sell a few vintage patterns. I'm working on opening a second shop with jewelry I make myself...nothing fancy, just fun stuff. Becoming creative again has really improved my mood and given me something to look forward to. Plus, it is a way to help with finances. Before I dive headlong into the second Etsy shop though, I'm going to work on making my environment conducive to joyful creativity. Neatness isn't my strong point, but I'm going to give it a good try.

I'm not sure how often I'll be blogging or if what I post will be strictly fat related. I've been feeling like posting about other stuff lately for some reason. We'll see what happens. I've sorta rambled on here. Not sure if I made much sense. Just trying to say where I am at the moment. Know that I'm with you in spirit and will come by for a visit and some reading as often as I am able. Hang in there folks!