What a roller coaster ride the past couple of months have been with my journey with sarcoidosis. Last year, after twelve years of constantly being on prednisone, I was finally weaning off the drug slowly. In November I had my usual echocardiogram which came back having my heart function ejection fraction at 35%. To say…
Category: Sarcoidosis
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…
When A Discount Is Not A Good Thing
5% isn’t that much of a discount if you go to store, but it is a lot when you are talking about ejection fractions and heart functions. It’s something you don’t want a discount on. It’s something you hope for an increase. I had my annual echo cardiogram last week and met with my cardiologist…
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…
The Weekend Revisit Of “When The Universe Slaps You In The Face”
Sometimes, when you complain about the little things, the Universe takes it upon it self to remind you why you should just shut up and stride on. I am not one to complain, and I find complaining and complainers irritating, but here I am complaining about complainers! Anyhow, I recently wrote a post about An…
Pushing Through The Wall
Twelve years, five months and thirty days. That’s a hell of a long time to be on Prednisone constantly, without a break. I wrote about this drug so many times on this blog and its horrendous side effects that I am not going to list them here again. If you are familiar with pred, you…
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,…
Try To See The Good In Everything
Change is inevitable. No matter how much we want things to stay or go back to how they were, they never are. So why grieve over the past that can never return. Yes, you were healthy and vibrant a year ago and now you have a chronic illness where you feel like crap most of…
The Weekend Revisit Of “Making It Through On Love”
I am a very, very blessed man, and I know it. I get a few emails in response to “My Story” where I give a brief synopsis of my journey with sarcoidosis and heart failure, and I get at least one email a week commenting on how “hard” my experience has been, or asking for…
Want To Know Why You Lost All Your Friends When You Became Sick? It’s Because You Also Became An Ass!
In emails from chronic illness sufferers and blog posts from the same, there is a common thread. “All my friends have abandoned me”. Admittedly, there are some real jerks out there that split the moment the going gets rough, but there are those that stick around. And then “all of a sudden”, they disappear. Then…
The Weekend Revisit Of “Facing Challenges”
That which challenges you, you either face head on or you avoid completely, but if you chose to avoid it, rest assured that you will face it another day. ~ Basil Rene (I Think) THE Steps Well I am pretty sure I came up with that one, but I am also sure it has been…
The Weekend Revisit: The Passages Of Time
Why is it that time flies? When I was a boy, it seemed as if time took forever to pass through my universe, but now as an adult, a day, a month, a year flies by in the blink of an eye. I have been at this blogging adventure for a little over two years…
Yes, I Am Alive!
Someone that follows my blog sent an email to me the other day, asking if I was alive as I have not been writing. Yes, I am alive! What can I say? I have been busy but honestly I just haven’t had the zeal to write on my blog, write my book or even journal….
Surviving Without Air!
I recently took a vacation and I decided at the last minute not to travel with my supplemental oxygen. What? Are you crazy man? Yep, you read that correctly. I decided to hop on a plane for a 7.5 hour trip with supplemental oxygen. If you are here for the first time, just a quick…
A Revisit Of “Open Lung Biopsy – My Truth”
Twelve years ago today I officially began this journey with Sarcoidosis when I had an open lung biopsy. Four years afterwards I wrote about it. Once more I give you my experience of the worst operation I ever had, but as bad as the experience was, I never regret doing it. I finally gave in…
The Surprising Effects of Loneliness on Health – The New York Times
Scientists are gaining a more refined — and surprising — understanding of the effects of loneliness and isolation on health. — Read on mobile.nytimes.com/2017/12/11/well/mind/how-loneliness-affects-our-health.html
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…
Is Everyone Deaf Or Do I Have Super Hearing?
I love music. I like all music except for jazz and rap. I listen mostly to pop music. I love any music with a good beat. I love to play music loudly in my car sometimes when it is a song I especially like. In spite of my love of loud music, there is a…
The Weekend Revisit Of: Doctors For The Other Side
There is a certain specialty doctor that I have heard my other doctors complain about. They call they the “Sell Out” doctors. These are doctors that leave their practice to work for an insurance company. What’s their job there? Do they examine employees of the insurance company at the nurse’s office? Are insurance companies so…
Easing Into Daylight Savings Time
I work weekends so I really don’t like when the clocks spring ahead on Sundays because I lose an hour of sleep, so my wife and I came up with a way to ease into it. Starting on the Wednesday night we set all the clocks ahead 15 minutes and then each next day another…
When Sh!t Hits The Fan, You Either Hold Your Breath Or Count Your Blessings
Last night as I started to doze off, there was a loud alarm sound coming from my bathroom. Instantly I thought it was the house alarm, but just as quickly realized how dumb the thought was as the siren is no where near the bathroom. Then I realized it was my oxygen concentrator. I got…
When You Realize That Life Is Just Awesome
Ever have a day when you wake up and realize just how truly blessed you are? I don’t just mean lucky to be alive. I mean truly and wonderfully blessed! A realization that stuff just falls into place for you no matter what! I woke up this morning and had that realization and it really…
A Conversation at Dunkin’ Donuts
I never go to Dunkin Donuts but I had a mean cravng for coffee and although it is 34°F, I wanted a frozen coffee. I don’t know Dunkin’s menu and this being a kiosk at the airport didn’t have a menu board. Me: “Hi. What type of frozen coffee drinks do you have?” Woman: “Hot…
When You Strike A Nerve You Know That You Are Doing Something Right
I recently put up a post called #Sarcoidosis Tweets Are The Whiniest Tweets There Are On The Planet and boy did I get a lot of direct emails for that one. That particular post received the second most hits of all my posts and the most direct email responses. The negative comments were by direct…
Happy New Year!
Wishing everyone a very happy HEALTHY and prosperous 2018 filled with love, joy and positivity. BR
Gluten Free Cheddar Cheese And Black Truffle Bread
One of the little secrets to improving your health is joy. It doesn’t have to be huge things, but the little things in life that bring you joy. Like a really good cup of latte can give me joy for hours. And a couple of slices of awesome bread as a late night snack is…
#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…
