A nervous woman looking up at a towering set of stairs

MDS - My Disease Stinks!

"I was surprised by the results of your recent bone marrow biopsy," my oncologist said. Then she said a word I had never heard before, myelodysplastic syndromes (MDS). What in the world? I thought. I taught special education classes for almost forty years. So many people never realize how much teachers study to learn about their students' medical issues. It has always amazed me how many diseases and disorders there are. It was a good thing that I retired the week before; I was about to start my chapter of life living with an illness.

Myelo is a Greek word referring to the bone marrow. Dysplasia is a medical term that refers to the abnormal appearance of cells when viewed under a microscope. Myelodysplastic syndromes (MDS) are a group of bone marrow failure disorders. My bone marrow is failing to do its job! MDS stands for my disease stinks!1

When I visited MD Anderson in Houston, Texas, I learned that my MDS is 5 q deletion. So part of chromosome 5 is missing. How in the world could this happen? I still have no clue. I have too many immature blood cells. Go figure. They are not developing correctly to do their job. As the oncologist explained it, some of my cells show up more like teenaged cells, not fully developed. Darn it! My disease stinks!

What is bone marrow?

Do you remember learning about bone marrow in high school biology? Bone marrow is the soft, sponge-like tissue in the center of certain bones that functions as a factory to produce white cells, red blood cells, and platelets. Unfortunately, when you have MDS, a glitch in your factory does not create the correct number of fully-developed cells.

White cells are essential in the immune system that prevents or fights infection. Red cells carry fresh oxygen all over the body. Platelets form clots to stop bleeding.

Symptoms of MDS may include:2

When my pity party was over, I thought about how I could manage to live with my stinking disease. As a special education teacher, I must have written hundreds of goal sheets for students over the years. The parent, classroom teacher, and I would plan how to help the child be successful. We would review past school records, evaluate their current skills and observe their work habits. Then, we would question which modifications and accommodations were needed for the students.

My goals

  1. Self-pace. luckily, I was able to retire from teaching, so that was the deal-breaker. I have entered the life of self-pacing myself - no need to rush around these days. I can take an afternoon nap if I need one.
  2. Advocate for myself. I enjoy volunteering for Meals on Wheels. I am always glad to participate when it is my turn, but I will turn the coordinator down flat when she asks me to stop what I'm doing to hurry down to substitute for someone who didn't show. The answer will be a polite but firm no.
  3. Keep moving. Don't be a couch potato! Exercise has never been my favorite activity, but I participate in Tai Chi, a slow-moving exercise. Instead, stay busy doing something: cleaning, organizing, selling your unwanted items. Be like the Energizer Bunny and keep going, maybe just a little slower these days.
  4. Stay social. I have enjoyed getting together with some of my former coworkers each month for dinner. The food is always good, and the company even better.
  5. Keep learning. Yes, I have learned a lot about MDS, but I love to read biographies and other non-fiction books. In addition, I have traced my ancestry back to the Revolutionary War.

My disease stinks, but we all have challenges we must face. For almost four decades, I helped students learn to read, write or understand math. Most worked hard to achieve, so I will, too. Wish me luck!

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