Taking Care Of Me

It’s been a while since my last post, almost six weeks. A lot has happened health wise with me since then. Lots of testing and fighting with insurance to pay for the major part of the testing and just saying “F**k it!”, and paying for it myself. It has been a small journey, and one…

Pushing Through The Wall

Twelve years, five months and thirty days. That’s a hell of a long time to be on Prednisone constantly, without a break. I wrote about this drug so many times on this blog and its horrendous side effects that I am not going to list them here again. If you are familiar with pred, you…

The Weekend Revisit Of “Making It Through On Love”

I am a very, very blessed man, and I know it. I get a few emails in response to “My Story” where I give a brief synopsis of my journey with sarcoidosis and heart failure, and I get at least one email a week commenting on how “hard” my experience has been, or asking for…

The Weekend Revisit Of “Facing Challenges”

That which challenges you, you either face head on or you avoid completely, but if you chose to avoid it, rest assured that you will face it another day. ~ Basil Rene (I Think) THE Steps Well I am pretty sure I came up with that one, but I am also sure it has been…

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….

Surviving Without Air!

I recently took a vacation and I decided at the last minute not to travel with my supplemental oxygen. What? Are you crazy man? Yep, you read that correctly. I decided to hop on a plane for a 7.5 hour trip with supplemental oxygen. If you are here for the first time, just a quick…

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…

The Weekend Revisit Of: Doctors For The Other Side

There is a certain specialty doctor that I have heard my other doctors complain about. They call they the “Sell Out” doctors. These are doctors that leave their practice to work for an insurance company. What’s their job there? Do they examine employees of the insurance company at the nurse’s office? Are insurance companies so…

The Weekend Revisit Of “The Power Of Positivity”

When I was first diagnosed with heart failure in August 2007, I was told my ejection fraction was 25% and I needed to have an ICD implanted. That was immediately after having surgery to close a hole in my heart, and during that surgery doctors came to the realization that sarcoidosis had gone into the heart….

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…

The Weekend Revisit Of : Finding My Dreams In A Song

The other day my wife asked me if I had any dreams and I honestly could think of none. Have I allowed my condition to stop me from truly living? How the hell could I not have any dreams, or have I locked them away so that I don’t end up getting disappointed, or worse yet, I subconsciously don’t think I will

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.

Please, Enough With The Bible Misquotes And Quotation Overuse 

I browse a lot of blogs everyday and a recurring theme, especially in health blogs, is bible quotes. I have nothing against anyone quoting the Bible, but if you are going to do it, then please put a quote that is actually referencing what you are talking about and not something completely different because you…

The Weekend Revisit Of: Not So Special Anymore

When I first was diagnosed with sarcoidosis, I was just your average sarcoidosis patient. And as time went by, the hole in my heart was discovered, then they found that the sarcoidosis had become active in the heart and the heart went into failure. Then as a result of those things, I developed pulmonary hypertension,…

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…

The Weekend Revisit Of : Lessons From Nature

Running off into the night, I could not help but be amazed at his survival instinct. He was injured, surely hurting, and yet still it was not in him at all to ever give up. His nature was pure survival. To just continue kicking.

Pill Pack Is A Great Service, But Not For Me

In 2014 I saw an article about Pill Pack, an online pharmacy that sends out your prescriptions to you prepackaged in little packets according to what time you take them. Each pack is dated and has the time you are supposed to take the meds, and which meds are in the packets for that particular…