Tag Archives: Autonomic Dysfunction

Of Mindful Manner

This site crossed my paths and I knew it was one to be shared, I already have purchased two shirts to help support this site, it’s real, its helpful and fits in with my page, I just love the energy these women Cassidy and Savannah have and I am sure you will love there site, check it out, tell your story and lets help get the word out about Invisible Illnesses and rare diseases. There are more out there than you know, knowledge is the key, awareness is the cure and support gives us the want to continue to fight. Check it out.
Our Story
Of Mindful Manner was born out of a need to better represent the individuals of the world who show no outward signs of their illness. Coping with an invisible illness can be frustrating and painful, but these issues are compounded by a lack of knowledge and understanding. Our reason for being is to help enlighten and encourage our friends, families, neighbors, and co-workers to address individuals with empathy and understanding. At Of Mindful Manner we know that what you see is not always what you get, and because of that, each garment is carefully curated to serve as an invitation for conversation. The more conversation that surrounds invisible illness, the less room there is for stigmas, ignorance and misunderstanding.

We want you to know that we see you and we recognize the battle you are facing. There is a whole community at Of Mindful Manner that supports you.

The Founders
Hello, Cassidy & Savannah here! We are so thrilled you have found your way to our shop. We are sisters who have had our lives tremendously impacted by invisible illness. One of us has Dysautonomia and Chronic Migraines. The other one of us has grown up with a front row seat to living with these conditions, and has shared in the burdens they can cause. That’s the thing about invisible illnesses though.. you can’t tell by looking at us, which one of us fits which description.
We know our story is not unique. Nearly half of the U.S. population lives with some sort of chronic illness and 96% of chronic conditions are invisible. So while you may not suffer from an invisible illness yourself, chances are you know one or several family members/friends or co-workers that do. We pray the future holds cures for everyone, but in the meantime we will dedicate our lives to spreading awareness in hopes of making this world a more mindful one.
Search Returns Shipping Contact Us Blog. WWW.ofmindfulmanner, link located on the left hand side of page, bring ya right to it. Kelly

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Well I thought I would share with you my new treatment.

Well the time has come for my treatment, I am blessed it’s all coming together, but never the less scary, a friend just reminded me not to be the victim but the fighter, so that is who I have to be. My treatment protocol is coming from Washington research institute, and national institution of health and Stanford. I.will be receiving ivig treatments that go between 3_4 hours per visit
My scheduleis 5 days on 5 days off. If i can tolerate the treatment, they will be surgically putting in a port, so i dont have to destroy my already calcified veins. Then we are back on 5 and off 5. There are risks but I have to say I am not getting them. Ihe first week will be the hardest , we are trying to get the home health to come do it at my home wich is 100 percent covered and keep me out of areas where people are being treated for infectious disease. That’s the goal. I was not aware this treatment will continue for a year if not longer. I will.have regular blood work and biopsys to see if the treatment is working. Each vial is $6,000.00 so making sure it working is important information and will be done at Stanford. Although this day should have been done years ago, the technology wasn’t there and reno can’t even perform my biopsys. Seriously!!!stanford does not trust the equipment or Doctors in reno because for one they do a echocardiogram and told my MVP has healed and My heart was fine, only to find out my MVP is worse and I had a heart attack and surgery done there. The simple step of turning the loop recorder down so it can read your hearts activity is pretty embarrassing, mind you the Dr did it with out any surgical attire in a Operating Room and had to be reminded by the tech he had no sterile clothing on. So many stories like that. I simply can not believe a Doctor in Reno can not do skin biopsy’s. 2017 why will no one do them, Every Dr said they can’t be done in Reno. My trust level has diminished in this town and the 49 Doctors that mis diagnosed me, but no one was willing to look outside the box, they choose to not keep up on the latest papers, journals ect. There a few good ones left in town but soon to retire, the only gynecologist my insurance covers, I wouldn’t take my guinea pig to. But there are a lot of new Doctors in town, one is my Electrophysiologist, He’s suppose to be like the best in the US, a little odd but I don’t Care, Dr Ogara, Dr Fairmond, Dr West, Dr Backman, but again none of them are treating me, it is going through Stanford and that is fine with me. One thing I have noticed about the new generation of Doctors coming into Reno, Is a lot of Indian decent and so kind, smart, empathy, and truly in medicine for the right reason, So Reno hopefully will be changing. So there r two things I’m asking any of my close friends, I might need help time to time or someone to come just sit with me, I’m also asking that please donate blood, blood is used and things removed that cure others, not just today, but on a regular basis, since I am the guinea pig for this I pray it not only works but can help all the other people that aren’t even being tested for this antibody, but I had a Dr at Stanford that went beyond the call of duty in researching who was researching my first disease the autonomic dysfunction didn’t just land off mars and pick me, I carried the antibody that causes it. So that being said I have volunteered to be part of the research team, I’m not going through just for me but the people diagnosed behind me, so I wanted to give you a update and to tell you how its going.

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