Day 233 of 365

My daughter stepped it up again.

She's been home these last couple days, hanging out, helping around the house a bit. She was planning on heading back home yesterday afternoon, but plans changed.

Not long after I wrote here yesterday about how icky I was feeling and how I wasn't up to taking my husband to the eye doctor in the evening, things changed. Not in a good way. As the time got closer and closer to his appointment, things started deteriorating more and more. By the time I needed to leave I had developed a full blown case of the stomach flu. Hours and hours of it.

Being too sick to even think, my daughter stepped up and took over. She picked her dad up, took him out for dinner, got him to his appointment, went grocery shopping, and filled the car with gas. She delivered him back home, unloaded the car, checked on her mamma, then turned around and went back to her place late last night.

I don't know what I would have done without her. It was one of those times when you're so very sick you can't worry about anyone or anything else. All you want to do is be in your jammies and in bed. And last night I only had to worry about myself.

My grown up, 23 year old daughter covered my responsibilities. Again, another proud mom moment. Just wish I was feeling better to enjoy it.

I did sit up for a while today, just long enough to write and to put a pillow form into the pillow I had made for Operation Kid Comfort. This one will be going to a little girl who has a dad away in the Air Force.

Day 232 of 365

I don't get excited about too many things. The thought of having a few days in a row off from work was something I was looking forward to. Except knowing the pattern I've fallen into, it isn't turning out as exciting as I thought it would.

Here's the pattern:

• Go to work and work 10+ hour days.
• Come home to dinner on the table (thanks to hubby). Eat dinner with little energy for conversation.
• Go to the computer and work another hour or two.
• Go to bed exhausted.
• Wake up the next morning still exhausted and do the same thing.

Heading into this going back to work thing, I thought the days off would be like when I wasn't working. Take my time getting up and getting dressed. No stresses, no worries. But now that I'm into it, it appears the stresses and worries (and e-mails to be answered) spill over from my work days into my days-off days. And the exhaustion from overdoing it on the work days carries over into my days-off days. With my days off from work having been sporadic, I've wound up using those days off as recovery days.

There probably is a solution. Don't overdo it at work. Don't work once I get home. Don't answer work e-mails on days off. Easier said than done.

Today is one of those days I'm paying for it. I'm off today, but had to do some work-related tasks. But the rest of the day has been icky. Not feeling well, tired, joints hurting. Knowing I have to take my husband to his yearly eye-doctor appointment tonight is not something I have the energy for, either.

These are the times I realize that I've taken on too much and my health can't sustain it for much longer.

But still a picture for the day. Thank goodness a butterfly happened to land on the window.

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:

Day 229 of 365

Guess I'm going to be sewing by myself forever.

I first thought I could get my daughter to help. While she doesn't mind helping me bake, she's made it clear that there will be no sewing for her.

Next I thought I could get my husband to help. He did some pressing for me on Day 144 and wound some bobbins for me last week when he was sick, but no sewing for him.

Then I thought I could get my mom to help. I even hinted back on Day 144  that I wanted to get her involved. And then last week on Day 225, I took over some stockings and felt I cut out for Stockings for Soldiers. I was able to get her through a couple stockings while I was there and she worked on some more after I left. But she wasn't exactly excited to be working on them. Guess no sewing partner there.

So back to myself. Me, myself and I, doing some type of sewing day after day. Sewing with a purpose. Sewing for others. I'm so excited about doing it, but I can't find anyone around me with the same excitement (or even a bit of interest).

No worries. A few hours solid hours of solo working time can equal a couple of quilt tops for Quilts for Kids.