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.