pain – Life As An Anomaly

#Sarcoidosis Tweets Are The Whiniest Tweets There Are On The Planet

There! I said it and I could care less if you are mad, offended, upset or whatever. You could call me uncaring or cold, mean or nasty, but the truth is I am so fed up with seeing twitter posts in general with the hashtag for sarcoidosis because all they are are just a bunch…

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…

Prednisone Withdrawal At 3mg

I am beginning to sound like a broken record but this is where I am at with weaning off of prednisone after 11 years of being on the drug non stop. In my last post about the coming off -“Prednisone Withdrawal Symptoms Worse Than The Actual Side Effects“- I described the different types of pain…

Could I Be Developing An Allergy To The Cold Or Is This Sarcoidosis Raising Its Ugly Head

For the past couple of weeks, when I come in from the cold, a few minutes after, I get this horrendous prickly feeling all over my torso, neck, jaw line and upper arms. It is the most irritating feeling, almost as if my skin is being attacked by a thousand little biting insects. I looked…

“Being Hip” Takes On A Whole Different Meaning Now

Sitting in my car in the parking lot of the mall, sipping on a Starbucks Frappucino, waiting for my wife and watching people go by, I try to keep moving around my leg to ease the discomfort of my hip. For the past couple of months my right hip has been aching off and on,…

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 Sunday Revisit Of “AICD (Defibrillator) Implant – My Truth”

Originally Posted January 29, 2012 I got a request to explain the procedure for an AICD (defibrillator) implant as the person is scheduled to have one implanted in a couple of weeks. As is my norm, I like to share me replies with the world. So here is AICD Implant – My Truth. After receiving…

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…

Do You Need A Dose Of The Perfect Medicine?

B Is For Bodies: “I Hate My Body” Is One Of The Dumbest Things You Can Say

This Is A Blogging A To Z Challenge Post April 2nd – “B” I recently received an email from a reader expressing their frustration with their illness and went on to say how much “… I hate my body now. I am fat and it won’t do anything like it used to“. When I was…

Motivational Monday: Learn To Appreciate What You Have

Snapshots Of My Life: Accepting Changes

Flashback Friday: The Nurse

Originally posted to my blog July 31, 2011 I have a real pet peeve with rudeness. It drives me up the wall, especially in the customer service area, and yes, nursing falls under that category too.I have been having a hard time with my breathing in the past couple of days and my chest hurts…

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…

Flashback Friday: Back From Break

Originally posted to my blog June 3, 2011 Like the consummate theater artist that has played many years out on stage in the same part and needed to get away from the constant day to day grind of being in the public eye, so too did I need to be away from the constant probing…

So Your Friends Can’t Get Away From You Fast Enough Because Of Your Illness. Did You Ever Stop To Think It Might Be Your Attitude?

It's a common complaint among the world of Those with chronic illness, ” I have lost all of my friends because of this disease”. It's easy to blame the disease because it did change you, no matter what. Some people are just not strong enough to face the new you, and you have to let…

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…

Happy Valentine’s Day?

Valentine's Day. A day of so many emotions for so many people. There are those young ladies, and men, that are hoping, expecting, yearning for that elusive proposal over a candle lit dinner at a dimly lit, expensive restaurant tonight. There are those men, and women that are stressed out because they are going to…

You Say You Are An Animal Lover. Then Why Are You Secretly Toturing Animals In Your Shower?

You hear people proclaim their love of animals all the time. My wife and I are the guardians of three dogs, one cat and an outdoor cat that lives on the property. Yes, we are animals lovers, but unlike most of the other animal lovers out there, we are not secretly torturing animals in our…

Be Patient

Flashback Friday: Ready, Aim, Heal

Originally posted March 9, 2011 I started this blog last year on the 4th anniversary of my open lung biopsy which definitively diagnosed my pulmonary sarcoidosis. I started it not as an informative blog, but as a blog about my personal experiences with the disease sarcoidosis. If you are a follower of my blog, you…

Motivational Monday: Be Realistic

Motivational Monday: Everything Will Be Okay

Quiet Like A Low Tide, But My Tide Is Coming Back In

Since my surgery in July to replace my implanted defibrillator, just like a beach at low tide, my blog has been pretty quiet, and many of you have written in to see how I am doing and I really do appreciate the thoughts. Yes, I have been quiet on here, and I hope that I…

Recovery Should Be Like A Slow Walk Down A Flowered Path

Today marks three weeks since I had my defibrillator replaced, and I was thinking, wouldn't it be great if recovery from surgery was as easy and delightful as walking down a flowered path? Who am I kidding? This surgery marks is my fifth one since being diagnosed with sarcoidosis in 2007, and as far as…