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…

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…

Avoiding The Purity Sales Pitch

Sitting on the over stuffed, over sized grey leather sofa, I face him, amazed by his frizzed out hair and his 70s sense of fashion. He asks me a million and one questions about my health history, going even deeper into my emotional history. No other doctor had done that before. He studies me intently,…

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…

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.

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: A Wasted Heart?

  There is no greater gift than that of a second chance at life, and the ultimate gift is for a parent or spouse to decide to donate their loved one’s organs so that another person may have life. When an organ is donated, the recipient has a second chance, an opportunity given by the…

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…

The Saturday Revisit Of “Why Do People Suffer?”

Originally Posted January 3, 2012 I was telling my wife about an email I received from someone telling me that they have suffered from sarcoidosis for many years, when she interrupted me and asked “Why do people suffer?”. The question stopped me in my tracks and I realized the sheer power of words and their…

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…

An Even Easier Way To Sort Your Medications! Have It Done For You!

I used to take fifteen different medications over four different periods during the day at one point in my journey with Sarcoidosis and its a pain to try to remember what to take and when, especially when the medication you are taking messes with your memory. I originally bought a monthly pill sorter which works…

The Sunday Morning Revisit Of “Color Me Blessed”

The Sunday Morning Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted November 19, 2011 entitled “Color Me Blessed” I know, I sound like a stuck record about how blessed I am, blah, blah, blah. But I can’t help but look at all…

When A Day At The Hospital Can Be A Pleasant Experience

All too often we are quick to list the bad days we have, the horrible people we meet and bad experiences we encounter. I know that I too am guilty of that in my blog. I have a pet peeve with rudeness, and I posted before about some of my negative experiences with nurses. Is…

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…

O Is For Operations

This is a Blogging From A to Z Challenge post. April 17th – O If you told me nine years ago today that by now I would have five different operations, four of them alone heart related, I would probably have laughed. And then if you would have told me that I would have a…

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…

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…

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…

Hey Marketing Department, We’re Not All Over 80!

I have some chronic conditions that apparently medical supply marketers believe only happens to older people. If I look up pulmonary hypertention, I will get photos of grand ma and grand pa with their oxygen tanks, smiling and playing with their grandchildren. If I look up heart failure, it will be pictures of grand ma…

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…