Up late. Wanted to paint. Should have been asleep. Took ten minutes and made two starts.
I went through my saved Instagram images. Work by other artists that just makes me happy. Color themes repeated. And this was one of them. A Big Stick Popsicle. Dripping on the sidewalk.
I had to lay down some paint. I wanted to see the colors flow. So that’s all this was. A quick commune with water and pigment. I was thinking, this has been an underlying theme for me this year (quick bits). It has already been a year!
You can look at the menu, but you just can’t eat
You can feel the cushion, but you can’t have a seat
You can dip your foot in the pool, but you can’t have a swim
No one, no one, no one ever is to blame
Aspirations in the clouds but your hopes go down the drain…
A well versed thought. Describes my busy year. I’m not sad or, down. Just thinkin’. Looking towards next year, and the positive changes ahead.
At the end of September I was given a horrible diagnosis. The doctor took my case to the board, a team of specialists. And they decided there is nothing they can do. My esophagus is 100% non- functioning. It also narrows at the bottom, like a bird’s beak. And my stomach stays open. The “flap” doesn’t close. He said that some people ask if they can replace the esophagus. I had never heard of that before. He told me with my lungs though, I would likely not survive the surgery. So that is off the table. Plus I know, the likelihood of rejection or complications from Lupus is high. So he referred me to another specialist. And told me, he could help me with a feeding tube, if that is what I decided to do.
A feeding tube. A hole in my stomach.
Yup. I was completely bummed for a couple of weeks.
But the thing is, food goes down. It just also sometimes, comes back up unexpectedly. Or gets stuck if I forget to chew thoroughly. (Painful.) I wash it down with a quart of water (32 oz., sometimes). I have had these same symptoms for years. The acid reflux is very likely a contributing factor to the damage in my lungs.
BUT WAIT, there’s more!
Early last month I had an appointment with another pulmonary specialist. Actually four of them came in the exam room. My case was so intriguing, (insert humor) that they asked me to stay for a second exam the same day.
They mentioned mixed connective tissue disease. A new term I have learned. Just means that it is not only Lupus, but a mixture of issues. Not unusual. I also learned that some of my symptoms DO in fact have names. Revelation!! They said what I have is rare, but did not give me the name. Maybe they did and I was just too busy digesting so much information.
The GOOD NEWS is, that my esophagus CAN BE REPAIRED. HALLELUJAH AMEN!!!
(Looking above with hands in prayer, eyes tearing, “Thank you Jesus!”)
They are fast tracking me for surgery. They will remove the damaged part of the esophagus, and bring the stomach up to meet it. Then they will work on repairing my lungs, sometime later.
Amazing news, right?!
Where I am now. Still in recovery mode. Caught a cold, well it was early November I think. Was barely over it when we went to San Diego. I knew the trip would just prolong recovery. It is basically a Lupus Flare. Pretty mild though. I am just exhausted, and sleeping more. Also, I lost my voice during the trip. Just used it too much, visiting with friends. It is still not back to normal.
I have two major projects I need to finish (start) before early next month. Hoping to also get a head start on the 30 day challenge. But you know what day it is, so that may not happen. Kinda hoping the challenge will be in February again. But either way, I will be interrupted.
There you have it. I rambled. One thought led to another. What the heck. Had to share the bad with the good. And the good is really GREAT 😉