For Family and Friends: An Update On Ron's Health

Many people have been asking for updates on the health of my husband. Thank you so much for your caring, kindness, prayers, love and concern. Ron has given me permission to write this post, which can then be more easily shared with our family and friends.

 

The picture above was taken in mid-May on our last camping trip together. Shortly thereafter, Ron's symptoms of exhaustion and weakness increased to the point that his doctor and rheumatologist said that he needed to be hospitalized. Some of you will remember how that experience was for Ron. He received excellent care. And I was even allowed to bring our golden retriever to visit at the hospital. Shira is such good medicine.

 

Although Ron had been given a potential diagnosis of polymyositis, which was scary, we had been told that it was treatable. And we were very hopeful that upon discharge from the hospital and beginning on a regimen of prednisone, that Ron would notice definite improvements. 

Which didn't happen. Yes, there would seemingly be some noticeable progress, but each time was followed by slips back into the experience of no improvement. So the overall weakness, exhaustion, and muscle loss was continuing while we waited for Ron's next rheumatologist appointment. This is when Ron would know more of the test results from when he was hospitalized, clarity about diagnosis, and a treatment plan for moving forward.

This appointment with the rheumatologist was yesterday morning. Ron learned then that he is diagnosed with something called "necrotizing myopathy" ― https://www.myositis.org/about-myositis/types-of-myositis/necrotizing-myopathy/#:~:text=Necrotizing%20myopathy%20is%20a%20newly,muscle%20cell%20death%2C%20or%20necrosis.. There are three different categories of necrotizing myopathy...

 

"Researchers are also beginning to distinguish different categories of necrotizing myopathy that have different risk factors and different treatments. These distinctions are based on the presence of different autoantibodies in the patient’s blood and most likely indicate that these are different diseases."

 

This is specifically what Ron has:

"Patients with HMGCR Autoantibodies: HMGCR (3-hydroxy-3-methylglutaryl-coenzyme A reductase) is a key enzyme in the production of cholesterol. Patients who have anti-HMGCR antibodies and use statin medications to control high cholesterol may unknowingly develop this type of statin-induced necrotizing myopathy."

Learning that this autoimmune disorder is "statin-induced" was hard. Ron had been taking statins for years as a treatment to keep his cholesterol lowered. Ron also was immediately taken off statins as soon as his doctor first suspected that Ron may have polymyositis.

Treatment now will be involving new medications in addition to the prednisone, infusion treatments (as soon as they are insurance approved ― which his rheumatologist is fighting for), physical therapy, healthy diet, regular appointments with his rheumatologist, and perhaps acupuncture. Ron has his first appointment with "Dr. Joe" tomorrow, which is my son Matt's excellent acupuncturist. So it's a lot.

When Ron went off to Cosco yesterday to pick up his new medications, I called my dear friend Lynn and had a good cry. This has been really scary and sad for Ron and for myself. And sometimes it can be hard to not catastrophize.

But gratefully I moved in my research beyond all the scary stuff that I was reading about necrotizing myopathy to the above video testimonial by "Myositis Mike". Michael Kerin has exactly what Ron does. And his story blew me away. Powerful! And my whole mood shifted. And I shared it with Ron as soon as he got home. 

And now I believe that it's an important video for each of us who cares about and loves Ron to see. Our attitudes about what is happening in our lives really matters. As part of our spiritual practices, I've learned that it is so important to remember hope and beauty and gratitude and love. And how we are all connected to each other and the web of life.

So, yes, these are not easy times. Ron is not able to walk down to the river with Shira and me now. He won't be able to travel to Victoria with me next month to see our Canadian family and celebrate my son Kevin's 40th birthday. There are losses and things to grieve.

AND there is so much to be grateful for. Such as a treatment plan and visions of progress and a positive outcome. There is also this beautiful day. And being surrounded by loving family and friends. And healthcare (however much I abhor our healthcare system that fails to insure millions). But Ron does have healthcare and he has excellent providers who are rallying and supporting him in every way possible. And there are stories like "Myositis Mike's" that fill us with hope. Most recently, we have also just learned that Ron's CK enzyme levels have dropped from a high of 17,000 when he was first hospitalized to 7,000. And on and on. Good things are happening.

In the middle of it all, there are so many blessings. So many. This includes where Ron and I both are at this time in our lives. We understand and embrace the impermanence of everything and the utter preciousness of each day. And each other. I remind Ron all the time that I'm giving him daily infusions of love. And that he is so loved by so many. Love is always the greatest medicine for hard times and all times.

Thank you for your caring, prayers, love and support. Hopefully this will help our family and friends to better understand what is happening for Ron at this time. And, all this said, these are not easy times for any of us. So bless us all! We're all related, all family, all in this together. And none of us gets out alive. So may we embrace our blessings, strengthen our capacity to hold both grief and gratitude, and care for ourselves and each other with tenderness, compassion, and love. 💗

With love,

Molly (and also known as Mom😊)

Photo by Molly