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….