Friday, August 25, 2017

One Phone Call Changed It All

After that phone call with Kathy in May and the two weeks in Reno, in June, things have definitely changed!

While in Reno, I met a woman with Scleroderma who does yogic hand exercises that Kathy taught her, yogic breathing practices, as well as attends Kathy's weekly class. This woman started all of these practices just after being diagnosed with Scleroderma. When she started, she was doing yoga in a chair. Now she is:
  • doing a full class on the floor like "able bodied" folks
  • reversed the initial hand curling
  • improved her lung function
Read those bullets again and let that sink in. Additional proof that yoga can help this (and other) disease!

Now I KNOW we have to get this information out to the masses. It's time to get this passion of mine set into motion! Since yoga has been such a help to my body, I've wanted to be able to give that gift back to the community, but didn't know how. It's not like there are large numbers of Scleroderma patients close by. 

Since starting this journey with Kathy, we have presented and taught at the Scleroderma Foundation's Scleroderma National Conference in Phoenix in July and at a Yoga for the Special Child Summer Conference here in Sarasota at the beginning of August.

Kathy and I demonstrating assisted yoga at the YSC Conference.

Video of our presentation and my adapted version of a Sun Salutation (36:00 mark)
While I was in Phoenix, I was asked to participate in a project where they take your picture and you share your story - a "Faces of Scleroderma" type thing ... what was supposed to be a couple of snapshots turned into a full on photo shoot because the photographer and I connected. I'm actually excited to see these photos, as I typically don't like photos of myself anymore, but these were beautiful. Even before editing.

I'm now also an ambassador for a grass roots organization called Accessible Yoga which works to provide yoga to people with all sorts of limitations - be it from diseases or trauma - as yoga really DOES change our bodies and help with disease maintenance. So, I'm heading to an AY conference in San Francisco in October and will be presenting and learning from others while there.

We've been asked to present in Philly in July of 2018 for the Scleroderma Foundation's National Conference again, as well as various rumblings with "invites" to Canada, and other U.S. locations that want to learn from us, so that they might be better able to help their communities.

I've also started writing for "The Mighty" - an online publication. My first piece was published two weeks ago and I'll be submitting another soon.

I'm discovering that having new focus and working to fuel my passion has also had positive disease affect. I stay on track more with diet and daily yoga practice now. If I'm trying to help others live better lives with their disease, I need to be on my A-game, as well. I have to lead by example.

Having these things fill my time also keep my brain positive and upbeat. I feel like I'm contributing to the world in ways I was never able to before. That all has an affect on disease activity and flares, as well. In a positive way!

I've been to see the cardiologist and rheumatologist recently an things are looking pretty stable. The protein in my urine has disappeared and while I have some pulmonary hypertension activity, it doesn't appear to be new. A pulmonologist visit is scheduled for October, as is a bone density scan. I want to see where I am in relation to my last bone density test a few years ago and use the recent tests as a new starting point to improve those numbers through lots and lots of green leafy derived supplements and weight bearing exercise.

Left hand surgery is in the process of being scheduled, as well. I'll be having the remaining three fingers amputated at the middle knuckle. The current full fist is no longer cutting it for me. It's slowing me down too much and I am confident (and have discussed thoroughly with two docs) that this plan, while drastic, is the path I need to take.

I added reflexology to my list of treatments this week. What an amazing experiencing. I'll be posting a blog with details about it soon.

Persevere and Rock On, my Sclero Slayers! Keep those bodies moving!

We got this!


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