Doctors – Life As An Anomaly

Have You Ever Wondered Who Is Paying For All Of This?

First Official ATS Practice Guidelines For Sarcoidosis – Scienmag

After so many years, it is good to see that positive steps are being taken towards education of doctors about sarcoidosis. First official ATS practice guidelines for Sarcoidosis cover diagnosis and detection – Scienmag: Latest Science and Health News — Read on scienmag.com/first-official-ats-practice-guidelines-for-sarcoidosis-cover-diagnosis-and-detection/

This Is Getting Too Close To Home

In less than a week, confirmed COVID-19 (Coronavirus) went from hundreds of miles away to 40 miles away to 5 miles away from my home. I fall into the vulnerable population because of my heart and lung conditions, and so I am being extra cautious. I have had bad flus before and recovered so I…

Xeljanz (Tofacitinib) Might Be Successful In Treating Sarcoidosis – Sarcoidosis News

Xeljanz is a partial inhibitor of the JAK enzyme that has been used off-label for the treatment of sarcoidosis and is being studied in clinical trials. — Read on sarcoidosisnews.com/xeljanz-tofacitinib/

The Weekend Revisit Of: An Echo Gone Wrong

I went in for an echocardiogram last week to see if I still had shunting at my PFO closure (if the hole my heart was still not fully closed and if there was oxygenated blood still mixing with oxygenated blood), and it turn out to be quite the adventure. I went to my new cardiologist’s office…

Biotechs Are Fighting To Treat Sarcoidosis And Other Autoimmune Disease

While we mostly think of disease as being caused by bacteria or viruses, an illness can often occur when the body’s own defenses turn against itself. Here we’ll take a look at seven rare autoimmune diseases you may not have heard of and what biotechs are doing to treat them. — Read on labiotech.eu/features/rare-autoimmune-diseases-biotech/

Defying The Rules And Living

When I first discovered that I had a hole in my heart, I was told that for six months afterwards I would need to take it easy. I needed to give the heart time to grow tissue over the plug that was placed in the hole, otherwise, if I fell too hard or anything like…

Let’s Change The Term “Heart Failure” To “Cardiac Impairment”

I have cardiac sarcoidosis and as a result, I have heart failure. I really hate that term. There is such a finality to it that it makes it sound as if all hope is lost, there is no coming back. I really wish that the medical establishment would start using a different term, such as…

Avoiding The Purity Sales Pitch

Sitting on the over stuffed, over sized grey leather sofa, I face him, amazed by his frizzed out hair and his 70s sense of fashion. He asks me a million and one questions about my health history, going even deeper into my emotional history. No other doctor had done that before. He studies me intently,…

Stumbling Is Another Opportunity To Dust Myself Off And Start Over

What can I say about this disease. It seems I make a step forward and then another one back or sometimes even two. For those of you that are now coming across my blog for the first time, I have a disease known as sarcoidosis and in 2007, I found out that it was in…

My Dreaded Registering With “The Man” Has Finally Come

Ever since developing cardiac sarcoidosis and getting my AICD implanted, I dreaded that one day it would affect my ability to get my driver’s permit. I love to drive, even in traffic. In summer my job requires that I drive an average of 4,000 miles in that time, and sometimes a 2 1/2 hour trip…

Prednisone Withdrawal Symptoms Worse Than The Actual Side Effects?

Here I go again. I have lost count of how many times I tried to wean myself from Prednisone. I am on this drug now for 10 years, 8 months and 23 days, and I tried to come off of it multiple times, all with disastrous results. I was being kept on a maintenance dose…

Before You Can Really Get Help, Learn About Yourself

Exactly ten years ago today, I got a call from my doctor to confirm that my test results were positive for sarcoidosis. The day before, I came out of the hospital after a three day stay for an open lung biopsy, the test to determine if sarcoidosis was indeed active in my lungs. To date,…

Questioning The Universe’s Decisions For Us Is Really Pointless

The other day I was reading on my iPad in bed when I fell asleep and my iPad fell onto my chest, right over my AICD*. The ipad has a keybord case, which has a magnetic closure, and magnets affect ICDs. They literally turn them off. This happened to me already before with my old…

The Weekend Worthy Revisit: The Definition Of Me

Originally Posted on October 3, 2011 When I moved to the US 25 years ago, one of the things the struck me with the culture is people’s need to know what you did for a living. They would meet you, and immediately ask what type of work you did. I realized with time, that no…