And Then There Was One

1 mg of Prednisone. That is what I am down to. I haven’t been this low on a dose since starting the drug in 2006. The lowest I was ever able to get to was 3 mg and all hell would break loose, prompting me to go back up prednisone. Now I made it to…

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,…

Yes, I Am Alive!

Someone that follows my blog sent an email to me the other day, asking if I was alive as I have not been writing. Yes, I am alive! What can I say? I have been busy but honestly I just haven’t had the zeal to write on my blog, write my book or even journal….

Gluten Free Cheddar Cheese And Black Truffle Bread

One of the little secrets to improving your health is joy. It doesn’t have to be huge things, but the little things in life that bring you joy. Like a really good cup of latte can give me joy for hours. And a couple of slices of awesome bread as a late night snack is…

Day 40 Of My Mantra Meditation “Challenge” Complete. 

I am practicing meditation for a few years now but mostly guided meditations and not everyday. A lot of the time I would fall asleep during it.  Today I finished a “test” (I prefer test over challenge) of doing a mantra meditation for forty days straight and I have not missed a day.  I will…

The Weekend Revisit Of: The Only True Healer Is You

I came across a blog recently that was written by a person with some of the same conditions that I have – heart failure and pulmonary hypertension. The tone of the writing was very angry and bitter towards both the diseases and the establishment.

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…

The Weekend Revisit Of: No Matter What You Do, I Send You Love

When I decided to return to massage school, I was assured by the school that they will work with me and my conditions. The school has been swallowed up by another corporation and the rules have changed. Of course now everyone is back tracking and claiming they never said as such, and that they were…

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…

The Weekend Revisit Of “Crossing Bridges”

Originally posted on April 22, 2012 On a recent trip into NYC for my ICD interrogation, my wife and I took a train down town to see the 9/11 memorial. We have not been there since the buildings fell. Prior to the attacks we were often in the North Tower as my brother had his…

Prednisone Withdrawal Is No Fun

Today marks exactly 10 years, non stop, that I am on Prednisone for sarcoidosis. The side effects of this medication can be horrendous, but thankfully my experience in those ten years were just mostly mood changes, thining skin and some weight gain. I am told that for being on it so long, my weight gain…

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…

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 “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…

Last Night I Met The Man Of My Dreams

Last night my wife was listening to an audio book about Edgar Cayce and his visitation by an Angel. I thought to myself how cool it would be to be visited in person by an Angel and fell asleep listening to the book. I had the most amazing dream. I dreamt that I was walking…

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 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…

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…