A Revisit Of “Open Lung Biopsy – My Truth”

Twelve years ago today I officially began this journey with Sarcoidosis when I had an open lung biopsy. Four years afterwards I wrote about it. Once more I give you my experience of the worst operation I ever had, but as bad as the experience was, I never regret doing it. I finally gave in…

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 Saturday Revisit Of “It’s All Just 50/50”

Originally Posted January 30, 2012 As I approach my fifth year of living with heart failure brought on by sarcoidosis, I think back to the day that I learned that people with cardiac sarcoidosis have a 50% chance of living for five years and a 20% chance of making it to ten years. Then I…

The Saturday Revisit Of “Why Do People Suffer?”

Originally Posted January 3, 2012 I was telling my wife about an email I received from someone telling me that they have suffered from sarcoidosis for many years, when she interrupted me and asked “Why do people suffer?”. The question stopped me in my tracks and I realized the sheer power of words and their…

Do I Look Like An Old Woman To You?

I am on prednisone now for ten years straight, without ever taking a break. My dosage has been as much as 70mg to as low the current 5mg. I am on what the call a “maintenance” dose, which translates to “because you are on prednisone for so long, your body can't make its own, so…

The Sunday Revisit Of “A Pill Doesn’t Weigh Anything”

Originally Posted December 6, 2011 When I was first diagnosed with Sarcoidosis in 2006, my BMI was 22. With a healthy BMI being between 18.5-24.9, I was slim and “normal”. Now five and a half years later, with no pause in taking prednisone, my BMI is now 27.1, which translates to being 30 pounds overweight….

The Saturday Revisit Of “Is Anything Really A Waste Of Time?”

Originally Posted December 4, 2011 Yesterday, when I walked into Mt. Sinai for the Sarcoidosis Support Group meeting, I had this instant foreboding that it was going to be a big waste of time, and I almost turned back before I even entered the auditorium. I didn’t and I stayed for the whole thing. It…

The Saturday Morning Revisit Of ” And I Play My Little Game

The Saturday Morning Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted December 14, 2011 entitled “And I Play My Little Game” I walk through the mall, in the grocery, the streets, and I watch into the eyes of strangers. They glance and…

An Even Easier Way To Sort Your Medications! Have It Done For You!

I used to take fifteen different medications over four different periods during the day at one point in my journey with Sarcoidosis and its a pain to try to remember what to take and when, especially when the medication you are taking messes with your memory. I originally bought a monthly pill sorter which works…

The Saturday Morning Revisit Of “Diary Of A PET Scan”

The Saturday Morning Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted November 21, 2011 entitled “Diary Of A PET Scan I had two PET scans before, one in 2007 and one in 2009. My sarcoidosis doctor decided for me to have another…

The Weekend Worthy Revisit: Selective Memories

The Weekend Worthy Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted October 17, 2011 entitled “Selective Memories” It has been 49 years, 7 months and 17 days, for a total of 18,128 days since I have come to this planet and as…

The Weekend Worthy Revisit: It’s Just Air

Originally posted October 10, 2011 What is it about vanity? No matter how any of us can profess we are not vain, we are at some intrinsic level. Some where deep inside even the humblest of people lies the vain gene. I don’t think of myself as a vain man, but to some extent, I…

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…

The Weekend Worthy Revisit: Forgetting Buddy’s Birthday

  Originally Posted on September 17, 2011 I am great at remembering dates and numbers. I know obscure dates, phones numbers from my childhood, even most of my account numbers and credit card numbers. Today I realized I forgot Buddy’s Birthday. It was his birthday last August 28th, and I forgot. It’s pretty hard for…

The Weekend Worthy Revisit: Slap Me Again

Originally Posted September 24, 2011 For every action, there is an equal and opposite reaction. For every white there is black. For every wonderful day of weather you enjoy, there is probably going to be a rainy one or two coming up. The day must be followed by the night, and vice versa. No matter…

My Guest Post For The PHight Or Flight Project Is Up

Serena over at Phight Or Flight Project invited me to do a blog post on her site about my journey with pulmonary hypertension, and after many rewrites, I finally got a submission to her after a month or so, which she posted yesterday. Here is an excerpt from my post. “I did meditation. I exercised…

They Have Come Up With A Name For The New Crazy

I always found that people's obsession with posting selfies on their social media sites a bit odd. I looked at it as a really modern form of narcissism or just down right low self esteem. Well, it turns out that I should have become a psychologist in the first place (yes, I wanted to be…

Some More Good News

I know that I said I was going to post some photos of my San Francisco trip, but alas, life caught up with me. The past three wells were crazy. My in laws were visiting for my wife's birthday, and work has been so crazy busy that I had time for nothing. My home office…

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…

R Is For Reschedule

This is a Blogging a From A To Z Challenge post April 21st- R I am supposed to have my heart catheterization in two weeks, but it turns out that somehow the date wasn't sitting right with me, and I always follow my intuition. I also found out that there is some work stuff that…

Q Is For Quiet

This is a Blogging From A to Z Challenge post April 18th – Q This year is nine years since being diagnosed with Sarcoidosis, and in that time I found that it is best to be quiet about my conditions, the way I feel and all what’s going on with me. My wife gave me…

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…