For Family and Friends: A New Update For Ron

Thank you to our friends and family who've been asking and wondering how Ron is doing. And some of you already know what a long, bumpy, and scary road it has been for my husband and myself over the past three months, with many unexpected surprises along the way.  

My first update on Ron's health was in this post that I did in June: https://mollystrongheart.blogspot.com/2022/06/for-family-and-friends-update-on-rons.html. This was when Ron was initially diagnosed with statin-induced necrotizing myopathy. It is rare for statins to be the cause of this condition. 

 

Then, a month later, I followed up with this post in July in the wake of Ron's hospitalization for blood clots in his lungs: https://mollystrongheart.blogspot.com/2022/07/for-family-and-friends-new-update-on-ron.html. That was scary. We were so grateful for the excellent treatment and care he received and relieved when Ron came home on July 30th. 

 

We were also grateful that Ron was able to see his rheumatologist on the following Monday. And it was at that appointment on August 1st that we learned what caused the blood clots. It was the IVIG infusion treatments that he'd received for the myositis.  

 

Ron had really begun to feel stronger after those first infusions and we were very hopeful that he was on the road to recovery and regaining much of the strength that he'd lost. So it was hard to learn that what was seeming so helpful nearly killed him. We also learned that it is very rare for the IVIG infusions to cause blood clots. Very rare. Sadly, Ron is among those rare cases. 

 

So, to make a long story much shorter, Ron is now on a different path. He's been insurance approved to do a different and more costly infusion treatment, which we're hoping will begin next week. There are also many other medications that he's on, each with its own risks, and often requiring an additional medication to offset the risks. Long story. There's a lot going on. 

 

One other impact of all of this is that Ron is now very immunocompromised. So this means that we're needing to go back to much of what it was like in the first year of the pandemic before there were vaccines for Covid. We are now pulling away from hugging family and friends, trying to limit our time with loved ones to outside, and being sure to mask when indoors with others or in any public setting. The not hugging part is hard. Along with not being able to travel together during this time.

 

All this said, we are both grateful to hear from Ron's primary care doctor that he has not lost one patient to Covid, included those who are immunocompromised, who are vaccinated and boosted. He has only had patients die, including with the new variant, who are unvaccinated. Still, we are both fierce about trying to protect Ron from Covid and doing whatever it takes to help him be well again. 

 

The good news in all this is that Ron continues to feel stronger than he had. Yes, he still tires easily and is limited in what he's able to do. And, that said, Ron is feeling better than he did. Each step forward is something to hold with such deep gratitude.

 

Ron also has both an excellent rheumatologist and an excellent primary care doctor. It means so much to be able to trust his providers and to have them respond quickly to Ron's questions and needs. They are both such strong advocates. We are grateful! 

 

Among the strongest medicine we are both experiencing through this painful time continues to be the love and support of family and friends. Ron and I recognize how incredibly blessed we are to be surrounded in love and held in the hearts and prayers of many. We are so deeply, deeply grateful. Thank you. Thank you.

Ron and I also remain grateful to be at this place in our lives where we are much more able to hold both grief and gratitude and, as Francis Weller wisely says, to be stretched large by both. There is a lot of stretching going on! And, each and every day, we are holding each other. The infusions of love continue!

None of us knows if there will be a tomorrow. So many reminders of the preciousness of life. So many. And so many moments every day were the depth of gratitude for having found in each other our beloved overshadows the harsh challenges of these times. 

 

Yes, I'm crying a lot. And Ron and I are needing a lot of support. In addition, we are also laughing and loving, soaking in the beauty that is everywhere, processing all the craziness in our nation and world together, thoroughly enjoying our furry family, allowing the love of family and friends to permeate our being, and just continuing to experience life to the fullest possible. This is a hard time. And this was a good day. A blessed day. And we are grateful

With love and blessings to all,

💗

Molly

Photo by Molly