A Chronically Ill Patient’s Version of The List

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We’re having guests in our home the last week of June and the second week of July, and I can’t wait. Every day this month I’m trying to do one job. I have a pretty big list, but the main thing I want to do is have the home clean and de-cluttered.

Hubby is helping me, a little each day. Yesterday, I cleaned half of the refrigerator. I was able to sit in a chair while I did most of the work. I began to clean my oven today. This is a more painful job. Although I sat in a chair, I still had to get up to reach the back. It was so dirty. I started with my Wagner steaming machine.

This worked very well and cleaned and 1/2 of the dirt and grime. Next, I sprayed with Easy-Off fume free and left it to work for an hour. When I wiped it down, so much grime came off. It was disgusting, but the fumes didn’t bother me. That’s pretty unusual.

Tomorrow I plan to finish wiping it down. Then, I’ll use the steamer again. I think that will finish up the job. All this pacing has kept me from crashing.

I did find something weird yesterday. On the way to the dentist, I fell on my front steps. I got twisted somehow and fell on my backside. I wasn’t hurting until I got home from the dental cleaning. My left knee must have twisted, because my knee was swollen.

Ice didn’t cause the swelling to go down. It feels like there is fluid around the knee. It’s swollen all around the knee and sore when I walk. I have a feeling that my hEDS has something to do with it. I might have strained something, but I don’t know. I’ll not go to the doctor unless it gets worse, or if I have redness or a fever.

My Mychart account sent me a new report. The x-rays I had Monday were now looked at by my doctor. There were four x-rays to see if my bone was healing. It was great news that the bone was showing some healing.

On one of the x-rays, the radiologist said that he saw a Weber C fracture. He wrote that it appeared to be healing. I had no idea what that was. When I looked it up, I was surprised to see that a Weber C fracture is a moderate to severe fracture that makes the ankle unstable and causes severe pain. Many people with this need surgery.

I am very interested to see if they know when this occurred. Did it happen when I broke my 5th metatarsal shaft? Did it happen sometime when I thought I had a sprained ankle? I’ll need to contact the doctor through MyChart to see what this means.

Because it affects ankle stability, I want to make sure that everything is as stable as possible. One of the things that I fear is my right ankle showing signs of Avascular Necrosis. The left ankle has AVN, and both wrists have AVN. If the right ankle develops AVN, I know that I might end up in a wheelchair.

I just don’t understand how the specialist read the radiology reports, and just ignore huge problems. The Weber C fracture is regarded as moderate to serious and

Type C (Suprasyndesmotic): The fracture occurs above the level of the syndesmosis.

• Stability: Almost always unstable due to the rupture of the syndesmosis and often the deltoid ligament or medial malleolus.
• Treatment: Typically requires surgical intervention (ORIF and potentially syndesmotic screws or a tightrope). [1, 2, 3, 4, 5]

Syndesmosis is an immoveable joint when bones are joined by connective tissues. And my connective tissues are crap, because of Ehlers Danlos. Malleolus is a bony projection with a shape likened to a hammer head, especially each of those on either side of the ankle. (Oxford Languages).

I’m trying not to think about it, because I have no idea what the orthopedic surgeon will tell me. Surgery would be horrible, because being off my feet for so long is the worst. I learned that when my Talus was replaced a little over one year ago. I sure wish that I could see my ankle/foot doctor in Kansas. He did a great job with my surgery there and he is extremely thorough (not overlooking anything, and willing to get an MRI).

My body has been a worry for many decades and continue. I continue to realize that I must be my own advocate. Doctors overlook so many things. This doctor was following up on my 5th Metatarsal break, and that’s all he wanted to think about. That leaves me, the patient, carrying all the worry. Many times, when the doctors won’t investigate, I’ve demanded further testing. It’s always paid off.

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. John 14:27

@2026, copyright Lisa Ehrman

Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not to be taken as medical advice. If you have a medical concern, please consult your personal physician.