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…
Category: Health
Running Silent And Having The Universe Slap Some Sense Up The Side Of My Head
I started this blog April 2010 for myself. It wasn’t meant to help anyone to be honest. I went through a major change in my life when developing sarcoidosis and all the complementary conditions it decided to provide me, such as heart failure and secondary pulmonary hypertension. It was just a way to expunge, and…
When “Home” Isn’t Home Anymore
When I was 19, I made my first trip to the US on vacation and fell in love. I drove into New York on a chilly June night from JFK and knew this was my home, this is where I was meant to be. I came back every year for vacation after that and eventually I…
When It Rains, It Storms
I posted last time that my friend was going in for testing and they discovered that he has lung cancer. He is not in a really good place, but that is another story. Last week I got a call that my mother was having trouble breathing and that she was going to the nursing home…
Knowing When To Support Quietly
“I’m having surgery on Monday” were the words that came up on my iPhone screen two weeks ago from a longtime friend. I’m not going into the details of the conversation, but it turns out that he has early stage lung cancer. He hasn’t gotten an exact diagnosis as yet, but he isn’t handling it…
What Is Typical Acceptable Reality
I want to put forward a thought on human behavior. First, take one hundred people in your contact list, be they personal, work associate or someone you went to school with but don’t really know well. On a piece of paper, write their names and their cell phone numbers next to it. Go to bed…
My Most Visited Post Ever
If you are on Plaquenil and never saw my little old post, head on over to “Plaquenil Withdrawal” and check out why this is the most active, multi-hit post for the past five years. I really can’t figure it out.
The Most Selfish Thing A Person Can Do
I get daily emails of top news stories for my town and surrounding areas and in close proximity are two large bridges that span the mighty Hudson river and a major train line that goes into New York City. Every week, sometimes more than once a week, someone kills themselves by jumping off one of…
Remembering To Laugh
Have you ever wondered how your mood or attitude can affect someone else? I know it does for me. I could be having the best day and then I come across a rude store clerk and it just gets my goat. Rudeness is just about my biggest pet peeve, but I am learning to go…
Losing The Battle But Never Giving Up On The Fight
“You may have to fight a battle more than once to win it” – Margaret Thatcher This is my fifth or sixth attempt of coming off of prednisone and again it failed miserably. I started weaning off in November and had pain that was tolerable, and in the middle of February I decreased the dose…
Is It Possible To Get Life Insurance When You Have Sarcoidosis?
I came across this article (Click on link below) on how to get life insurance approval despite having sarcoidosis. Unfortunately, this does not hold for cardiac sarcoidosis as if you check any insurance application with anything related to the heart, you are denied faster than a person ordering steak at a vegan restaurant. However, I hope…
New Rx Can Help With Stress And Other Ailments
I came across this infomercial for the best remedy for stress and a lot of other ailments. Please take a minute to look at it. I have used this Rx for many a year now, and I know it has helped me bounce back from being a few years away from being on a heart…
“Being Hip” Takes On A Whole Different Meaning Now
Sitting in my car in the parking lot of the mall, sipping on a Starbucks Frappucino, waiting for my wife and watching people go by, I try to keep moving around my leg to ease the discomfort of my hip. For the past couple of months my right hip has been aching off and on,…
Here I Go, Again!
I haven’t written anything to this blog for a while and frankly it’s because I have no inspiration. The blog was originally meant to be my posts about living my life with Sarcoidosis, but really, I don’t have very much to say anymore on my condition that hasn’t already been said. Then I got an…
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 Sunday Revisit Of “Is There Such A Thing As Being Too Positive?”
Originally Posted March 7, 2012 Looking at the statistics on my blog, and a few emails I received, it seems the posts with the highest number of hits are those few ones where I am not positive. What exactly are people looking for? Are people look for stories and posts of despair that prove…
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 Sunday Revisit Of “AICD (Defibrillator) Implant – My Truth”
Originally Posted January 29, 2012 I got a request to explain the procedure for an AICD (defibrillator) implant as the person is scheduled to have one implanted in a couple of weeks. As is my norm, I like to share me replies with the world. So here is AICD Implant – My Truth. After receiving…
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 “My Reply, To A Reply, On My Nurse Rant”
I posted this back in December 16, 2011, and it became a heated discussion with a nurse, so I thought I would revisit it here today, along with the lengthy comments, which were more interesting than the post itself! My Reply, To A Reply, On My Nurse Rant I recently posted a blog entry “Here…
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,…
Who Came Up With Only Twenty Four Hours In A Day?
It has been an exhausting past few months, and admittedly, my blog has suffered the consequences. There is so much I wanted to write about, all sitting at the tips of my typing fingers, but never to make it onto the virtual keypad of my tablet. I am physically and emotionally exhausted. My body is…
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…
The Sunday Morning Revisit Of “No, I Don’t Watch Cooking Shows”
The Sunday Morning Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted Nov 12, 2011 entitled “NO, I DON’T WATCH COOKING SHOWS“ When people find out I am a chef, the first thing they ask is if I have a specialty, to…
The Saturday Morning Revisit Of “There Are Just Somethings I Won’t Give Up To This Disease”
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 13, 2011 entitled “There Are Just Somethings I Won’t Give Up To This Disease” Stay away from acidic foods. Stay away from sugars. Stay away from simple carbs. Stay away…
