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…

Motivational Monday: It Has To Rain, But Not Today

Life with a chronic illness can suck at times, and for many, it seems the down days are more frequent than the up days. But when you do have the up days, make the most of it. Appreciate it. Enjoy it. Appreciate the rainbow and don't sit around waiting for the rain to return.  …

Flashback Friday: Pushing On Through

Originally posted to my blog June 17, 2011 My wife and I are very busy at this time of the year, and it seems we are always working or going to appointments. We work together and are pretty much together 24 hours a day. Yet, one day a week we try to have a date…

Sharing My World: Week #10

Here are my answers to Cee's Photography weekly Share Your World. WHEN YOU LOSE ELECTRICITY IN A STORM, DO YOU LIGHT THE CANDLES OR TURN ON THE FLASHLIGHT? HOW MANY OF EACH DO YOU OWN? Thankfully, we have a generator so if power goes, we're ok. We do have flashlights in case there is ever…

Thumbs Down? Really?

If you read my post about getting a portable oxygen concentrator, and hoping that insurance will pay for it, well, they won't. I am disappointed but not phased. I decided that I will just buy the unit myself. Right now, because of the changes to my insurance plan, I now have to pay $150.00 a…

Happy Birthday To Me!

It's my birthday! I made it to 53! I am so grateful to still be here on this planet. I was told in 2007 that I would need a heart /lung transplant by 2012, and I am still here with my original heart and lungs, functioning well. Yep, it's great to be 53!   Written…

Motivational Monday: Be Happy For This Moment

All too often, life with a chronic illness can be a pain, literally, but I always say I would rather be with the pain at times than have the alternative. Death. This is my life, and I cherish every moment of it. Even the days that may not be the best.   Written by Basil…

Winter Is Ripping Apart My Hands

I'll admit that I am a germaphobe to a certain extent, but I am not OCD. I do wash my hands a lot, I am a chef after all and this winter is torture on my hands. The skin is already thin from being on prednisone for so many years, and add to that the…

I Stopped Questioning The Universe

    I recently read a post (which inspired this post) over at fellow PAH blogger, Living On O2 For Life entitled “Why?” where she questions her place in the order of things with regards to surviving her pulmonary hypertension and living to adulthood when a child with the same condition died. If you are…

Flashback Friday: If Someone Had Told Me

Originally posted to my blog on May 8, 2011 If someone told me five years ago that today I would have a hole in my heart that would be discovered only after having a mini stroke, I would have laughed.