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,…

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…

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,…

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…

When A Day At The Hospital Can Be A Pleasant Experience

All too often we are quick to list the bad days we have, the horrible people we meet and bad experiences we encounter. I know that I too am guilty of that in my blog. I have a pet peeve with rudeness, and I posted before about some of my negative experiences with nurses. Is…

Awesomely Amazing Happy Results

I had a right heart catheterization on Monday to determine what is the cause of the increase in my shortness of breath and huge drop in oxygen saturation with exertion. The possibilities were either my pulmonary hypertension worsened or my heart is going back into failure. Turns out, amazingly, it's neither! All of my pulmonary…

O Is For Operations

This is a Blogging From A to Z Challenge post. April 17th – O If you told me nine years ago today that by now I would have five different operations, four of them alone heart related, I would probably have laughed. And then if you would have told me that I would have a…

N Is For Navigation

This is a Blogging A to Z Challenge post April 16th – N When I started along this journey of my life with sarcoidosis and the accompanying conditions of heart failure and pulmonary hypertension, I had to learn quickly how to navigate my way through the medical establishment. Since I have different conditions, I somehow…

C Is For Changes Which Are Good Sometimes – I Hope

THIS IS A BLOGGING A TO Z CHALLENGE POST April 3, 2015 – “C”   2015 is proving to be a year of many changes so far. Some of the changes were stressful, and others were welcome, and yet others were surprising, but needed. And we still have a little over nine months to go…

Flashback Friday: The Nurse

Originally posted to my blog July 31, 2011 I have a real pet peeve with rudeness. It drives me up the wall, especially in the customer service area, and yes, nursing falls under that category too.I have been having a hard time with my breathing in the past couple of days and my chest hurts…

Flashback Friday: Back From Break

Originally posted to my blog June 3, 2011 Like the consummate theater artist that has played many years out on stage in the same part and needed to get away from the constant day to day grind of being in the public eye, so too did I need to be away from the constant probing…

21 Things You Need To Do To Live With Sarcoidosis

Almost all the emails I get are from people asking how I got better, and I always say that it was a combination of different things. When I recently I told someone that, they told me to give them a checklist of everything that I did. So here is my checklist of everything I think…

Run For The Hills!

It's all over the news. The panic, the fright, the government intervention. Why? It's Measles! Children are getting measles! Eh? What? Really? You would think that it was an Ebola outbreak. Remember when a kid in your neighborhood had the measles, your parents sent you over there to hang with them so you could get…

The Good, The Bad And The Ugly

Admittedly, I have not been keeping up with posts to this blog, but life happens and time seems to slip away from me more and more. Hopefully I will be able to get a grip soon and be able to devote time more appropriately to the blog. Until then, here is a quick update of…

Above Everything Else, Always Listen To Yourself

Life with a chronic illness is sometimes confusing, plain and simple. You have all these voices coming at you in different directions telling you many different things. If you are like me with different specialists for each condition, they all try to work together, but they all have their own separate opinions, and you don't…