Wednesday, April 28, 2010

The Way It Goes on a Bad Day

This is how it goes. Your medicines are getting low. You call in for refills. One of your medicines needs prior approval, the pharmacist informs you. They will call the doctor's office and request it. Two days later, you drive to the pharmacy. None of your refills are ready. The tech doesn't know why. Please come back later. You drive back later, and one medicine is ready. The Medicare drug plan denied approval for the other, and it costs $243 for half a month's supply. "Never mind." You take the other and go.

The drug you can't get is Lidoderm, a newish pain medicine that works well for you. You slap on a patch, the lidocaine soaks in through the skin and relieves the pain underneath for 12 hours. No addiction, no side effects, no fuss. You could take a huge dose of narcotic pain medicine and get the same relief, but it has obvious drawbacks - nausea, drowsiness, the risk of physical dependency. Unfortunately, the insurance company doesn't care. Lidoderm is expensive, generic pain pills are cheap.

You go home and get out the computer. You have to research this. How do you make an appeal to that Medicare Part D provider? Does the drug company have a patient assistance program for people who can't afford their medicine? Did your doctor say the wrong thing in trying to obtain the approval? Lots of angles to attack.

So today you have knitted and washed clothes and changed bedclothes and cleaned up the kitchen. You made salmon patties for dinner. You let the dog in and out, in and out and fed her. You bathed, cleaning the bathtub after. You did the appropriate maintenance to live in your home and care for yourself. All this with severe pain in your joints and no patches.

In addition, you have taken all your meds, watched your diet, logged your activity and exercise.

This is why people with chronic illness get depressed and discouraged. It's not just about knowing what's wrong and how to fix or manage it. It is about mind-numbing interactions with people who don't give a damn that their mistakes make your life miserable. It's about dealing with businesses that have all the power over your health and won't use their deep pockets to give decent care without it being legislated and enforced. And about trying to keep your finances together after more people who were selfish and greedy used your money to line their deep pockets and drained your resources.

Today my ears are ringing (they have been for two years), my sacroiliac joints hurt, my bath made me tired, and my brain is holding too many thoughts. I had to get my joy from my daughter, my new power tool toothbrush, knitting baby hats, and still being alive. The margin is very narrow.


Wednesday, April 21, 2010

Continuing the Afghan (Part 3 in series)

Wow! I've been absent from the blog for a month, and things have changed radically. Physically, I'm back. The rituximab helped every lupus symptom, including my energy and the sacroiliitis. I can put my feet on the floor without pain. I'm back on my stationary bike and I've lost five pounds. Onward!

Prep for the Market continues, and I've signed up for a number of sessions early in the season. I'm nervous about this Sunday's opening. I've added a few display pieces to make my setup easier, and I'm leaving a couple of things at home. Big trial. I made a short stack of baby blankets and added some baby garments.

In the midst of the Market prep I noticed that Cherry Tree Hill was looking for designs for their new yarn, Fingerpaints. It is a self-striping sock yarn, all merino, in yummy colors. I chose the Morning Glory and whipped out the Muffin Top Mitts that you see in Cheryl Potter's company newsletter here. I'm so excited to see my design in that spot! The yarn is fun to work with, and mitts are such an essential for me.

I haven't forgotten that I was to finish the afghan posting here. I finished both of the red panels, whipped out the stockinette stitch gray center, and duplicate-knitted OSU on it. The connection between the panels is created by making a row of single crochet on each connecting side, then using single crochet to stitch them together. It makes a nice raised seam that is decorative and sturdy. No worry about loosening of a sewn seam. That's it in the photo above.
News flash: I'm knitting MYSELF a sweater from Noro's Taiyo (cotton 40/silk 30/wool 15/nylon 15). It's a gorgeous colorway with greens, browns and pinks, and I'm happy to have my hands back on their incredibly beautiful, organic yarn. Something to show soon, I hope.
I'm back! That includes back to writing. Peace.