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 “Letting Go Of My Old Self”

Originally Posted March 9, 2012 Letting Go Of My Old Self One thing about having a chronic condition, and in my case, more than one, is that you need to accept that your life, in one way or another, will change forever. I remember the day before I had my defibrillator implanted I knew that…

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…

25 Years Of Wedded Bliss

Christmas Eve will mark my wife and my 25th wedding anniversary. This past weekend marked the 34th anniversary of the day we met when she was just sixteen to my very much older nineteen. We usually go out on Christmas Eve night for a really nice dinner, but this year, since it is such a…

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…

I Should Be Fed Up, But Remarkably I’m Not

In 2006 when I entered Putnam Hospital Center to have a failed bronchoscopy to determine if I had #Sarcoidosis of the lungs, little did I know that journeys to hospitals and medical centers would become the norm. Later that year I had an open lung biopsy, by far the most painful procedure I ever had,…

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…

It’s Good To Be Home

  Just landed at JFK and in the car in the way home (no, I am not driving). I was away in in birth land for five days to visit my mother and the heat was ridiculous. Most people would be envious of being in a hot climate, but when you have heart problems and need…

Life Is Such A Roller Coaster Ride

Life in general, and especially when you have a chronic condition, is a roller coaster ride, isn't it? It seems that when ever anything good is happening, everything good happens. And then something negative rolls in, and it seems everything goes down hill. Earlier this year, I was on the crest of the ride. Everything…

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 Sunday Morning Revisit Of “Color Me Blessed”

The Sunday Morning Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted November 19, 2011 entitled “Color Me Blessed” I know, I sound like a stuck record about how blessed I am, blah, blah, blah. But I can’t help but look at all…

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 Saturday Morning Revisit Of “Once You Have Hope”

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 8, 2011 entitled “ONCE YOU HAVE HOPE” I received an email from a sarcoidosis sufferer asking me how can I constantly maintain a positive attitude. I have answered this question…

There Is Such A Thing As Too Much Support

One of the biggest complaints of people with chronic illness and chronic pain is that they don't get enough support from family and friends. I have always been an independent person, and never really needed support. My wife is a huge support to me and I don't need it from anyone else. A lot of…

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…

Flashback Friday: Living Your Life For You And Not Your Disease

Originally Posted September 11, 2011 I follow this person on Twitter that has an implanted defibrillator and he is campaigning heavily for a patient’s rights to access his or her defibrillator information at will. Although I do agree with him to some extent, a recent tweet of his was an eye opener. It read: “I’m…

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…