Day 231 of 365

I got the word.

The results of the ultrasounds on my hands were not good. I had an ultrasound on the hands about a year ago and, in comparison, this one is worse. The swelling in the joints and tendons of my hands and wrists has increased. The joint destruction is continuing. With the aggressive treatments I'm on (injections of Methotrexate and injections of Enbrel) he should not be seeing ultrasound results like I had.

According to the doctor the hands are a good "dipstick" of the body. By doing a simple ultrasound of the hands and wrists you can determine the type of problems going on in the other joints. If it's happening in the hands, it's happening elsewhere. If the issues are getting worse in the hands, they're getting worse throughout the body. So it's not necessarily just about the wrists and hands, it's about what that information represents. 

When I started injecting Enbrel on Day 15, I couldn't believe I had gotten so desperate for relief. Then on  Day 92 when I had to start injecting Methotrexate I thought I had crossed my last line in the sand. Except now there is another line waiting for me. It's time for the last ditch effort, the thousands of dollars per session treatment.

The infusions. It's time for IVs.

Several in the first month, then one about every month afterward. Right now the doctor's office is working with my insurance company to decide coverage, but it appears it will only cover a portion of the exorbitant cost.

My daughter knows that with me only working part -time, finances aren't exactly strong right now. So she asked me what would happen if I refused the IVs. If I refused, things would continue to deteriorate and my body would never be able to recover. My joints would continue to fail and the pain would continue to get worse. Although, even with this new super-aggressive last treatment option, things could continue to get worse.

I feel kind of stuck right now. Do I put our family into financial stress to pursue treatment? Do I cut out one of the activities in my life - writing, working, or sewing - to try and keep me from using my hands too much? Do I do nothing and hope for the best?

Right now I'm in do nothing mode. I'll keep on the current treatments until I hear back from insurance. That will buy me some time before I have to make any decisions.

Time to sew, write, and harvest some of the last of the garden. Pumpkins, watermelon, kale, peppers, and some not-quite-red tomatoes.

Decorated Scarecrow Cupcakes - Day 230 of 365, Tutorial Tuesday

I couldn't be prouder of my daughter nowadays.

The teenage years weren't the best, though. Having both parents as school teachers didn't help things much, and having her dad as her teacher for a couple classes during high school didn't either. She was more interested in volleyball than studying. Yet we sent her off to college, paying her way - tuition, room and board, books and supplies, and some spending money. She rarely called home, and when she did the conversations were short. She was more interested in a social life than going to class.

Two years of college and she was back home. (Probably with the classes she did pass it only equaled one year.) She decided the working world was where she was headed. She moved in with my mom in the big city, hoping for better job opportunities. She couldn't find anything for the longest time, but finally as the Christmas holiday rolled around she got hired as temporary holiday help.

But bless her heart, the girl who was raised with a good work ethic but never put it into practice worked her tail off at that holiday help job. And when they let the holiday help go right after New Year's, they found a position for her. Then earlier this year when they did a round of layoffs store-wide, they moved someone into a different position so she could be kept on.

Now two years later that hardworking girl is still there. Loving her job and doing great at it. And little miss 23 year old calls home every day.

We are proud of her commitment to the working world. As a mom, I'm just as proud of the work she did for the tutorial this week. She bought the ingredients, prepared the workspace, and crafted what she wanted to say. Cool and confident on camera as she made Scarecrow Cupcakes.

Way to go, girl!

Click on the video for the directions: