Could My Love Really Be Turning Against Me?!

I remember too well the day we met, almost thirteen years ago, a cool morning, the sun high in the cloudless New York City sky. We were introduced by, of all people, an Ayurvedic doctor that I had only met 30 minutes before. He said we would be good for each other. At first I was…

The Weekend Revisit Of: Did You Say I Don’t Look Like Arnold?

I have experienced quite of few changes with the development of sarcoidosis and the accompanying conditions of heart failure and pulmonary hypertension. I put on 30 pounds, a lot of my muscle definition has gone and now my doctor tells me I am starting to develop Gynecomastia. Yep, I am getting man boobs, and with the…

The Weekend Revisit of: “The Prednisone Demon Revisited”

I wrote about him before, singing my song of impatience with he that causes the impatience, being angry with he that causes the anger. Yes, my old nemesis, the Prednisone Demon. He has been in my life for six years now, sometimes being a strong influence and at times, just sitting in the background, waiting….

I Need Some Clarity

A couple of weeks ago I woke up with my vision really wonky. My left eye seemed out of focus and I had flashes of lights. When I looked at anything digital straight on like my clock or phone, there was a spot just to the left that was just blank. I called my eye…

I Have Become Thin Skinned (My 1,000th Post!)

(This is my 1,000th post to this blog!) I scratched my cheek after closing the door behind the repair man and I could feel it running across my palm, down my wrist and onto my fore arm. The warm, wet, red liquid that is the lifeline of every human. The liquid, bright red and thin…

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…

Breathing Easier

When jets are at altitude, the inside of the plane is pressurized to simulate earth at about 8,000 feet. For a person with breathing problems, any altitude above 9,000 feet can cause problems. In the last year I had my fair share of air travel. I have seen the inside of JFK a total of…

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: Dangers of Statistics

DANGERS OF STATISTICS Originally posted April 24, 2012 I read a blog today by a heart failure patient who had just crossed their two-year mark of being diagnosed, and according to them, the statistics state that with their particular condition, they had a 50% chance of living for two years. This person apparently is convinced…

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…

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…

Prednisone Demon Begone

I recently posted that my latest bone scan revealed osteoporosis in my spine. This has finally convinced my doctor to take me completely off of prednisone! Yea! I am on this demon, mood swing, hunger causing, bone reducing, diabetes causing, tendon weakening drug for ten years this coming April and I have tried to come…

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 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…

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…

Flashback Friday: Stepping Out Of The Fish Bowl

Originally posted to my blog on May 12, 2011 There is an old saying that “the last one to know they are in a fish bowl is the fish”, and I can say that has been true for me for the past few weeks. I have been angry and whiny and it has been reflecting…

My Intial Thoughts On The Inogen One G3 POC

I recently wrote a blog post about getting rid of my liquid portable oxygen and getting a personal oxygen concentrator [Click here to read the post]. The new unit, an Inogen One G3 Portable Oxygen Concentrator, was delivered on Friday and here are my initial thoughts on the unit. The unit comes with a wall…