Today is World Scleroderma Day. Gosh, there should be a huge post today that pulls together my whole monthly effort… nope. That sounds just exhausting, doesn’t it. How about we just head out to my garden to see what’s up. After that I can show you the big picture on what I’ve been doing all month in “Science and the Scleroderma Girl”.
Getting into the garden has been difficult for me since the sun and I are not friends. Last week I went out for a couple of hours to weed in the morning in the shade, and yep… I developed a rash on my arms and then the flare arrived. I was holed up for days getting over that little misadventure. After I recovered I tried out weeding after dark. Gosh, I’ve had more fun moping floors. It just isn’t the same if you can’t actual see what you are doing. I wonder why that is?
There are leggings too to provide complete sunblock for the surf enthusiast, but that probably is more than I need to tend to the roses. I usually get wet while I’m watering in the evenings, and once again this baby should handle it fine. I am so set up for the rest of the summer!
Let’s see what is still alive in the garden after a week of amazing, blistering heat. Yesterday it was 105°F; these plants are no longer happy.
This weekend will be cooler, and I gave all the plants a good watering this evening so that they will recover over the next few days. Poor plants. Life has been tough for the last couple of weeks: heavy rain for a week followed by triple digit temperatures and blazing sunlight.
Now that we are leaving the garden here is my Scleroderma Month of June:
- I introduced the series with this post called Introducing Science and the Scleroderma Girl.
- In A Series of Serendipitous Events I related how the events of my life prepared me to take a scientific approach to my autoimmune diseases.
- Then I took a detour to explain what science is…
- …and how I am taking better control of my scleroderma by acting like a patient scientist.
- Every scleroderma patient has to make hard choices about treatment options. I talked about some of mine in this post.
- Then I became all teacher-ish and presented the characteristics of controlled experiments.
- Once you feel like you understand the design of experiments it is time to hunt for answers to your own questions in published research studies. I explained how to do this and shared some of my favorite links in this post.
- The reason I talked about research and the tools you need to look at what is published out there is because I had to make more hard choices about my own treatment. Having more information helped me with these decisions.
- Almost all scleroderma patients have more than one doctor. In this next post I shared how I arrived at a team of collaborative doctors.
- Ugh. Then the rants began. So many treatment options. So much false information. What should I hunt for research info on?
- Well, I started with the one bit of false info that drive me the most crazy. Here was the dairy rant.
- Followed by the sugar rant.
- And the supplements that I take and the one that damaged my kidneys.
- Closing down the show was AP Therapy and leaky gut. I’ve been informed that there wasn’t enough venom here for a rant, but I did try.
What I didn’t put into this was a lot of actual information about what scleroderma is. Oops. This post that I wrote for Rare Disease Day should cover that glaring omission.
So, this is World Scleroderma Day. All over the world people have posted the pictures of their smiles in an effort to make an invisible, but pretty darn serious, disease have a face. My smiling face is above: a little crooked these days, my lips have gotten too thick to smile right, and my hair is falling out, but I am doing well. Every day brings a new challenge, but still, with good luck, humor and a touch of science, I rise.
Have a good weekend everyone!