We’re To Help, But Please Don’t Ask Us Anything

I get a specialty medication for my Pulmonary Arterial Hypertension or PAH, that is very expensive and has to be delivered to me by over night UPS. Along with receiving this specialty medication is that you are signed up in their program, meant to provide information and answwer any questions you have with your disease or medication. There is a…

Staying In Style

  As sarcoidosis patients, inevitably we will all end up in the hospital at some point in time, and for some of us, it seems we spend more time in there than out. One of the things most hated is to put on the dreaded hospital gown with its opening in the back, showing all your…

So What’s Good In Your Life?

I took my car for a maintenance service and while there, there was a woman who would tell everyone she met that she was having hip replacement surgery on Monday and then go into the story of all her surgeries. I am a very private person, which seems like an oxymoron considering that I have…

Be Afraid. Be very Afraid.

Recently, a cardiac nurse, Miriam Leverington, was stopped for speeding and she made a remark to the police officer that stopped her. She told him “I hope you are not ever my patient”. The police officer filed a complaint with the hospital where she worked, and said that her remark was basically a threat, which suggested that she…

Bad Air Quality Days Do Take Their Toll

For pulmonary sarcoidosis, COPD and cardiac patients, bad air quality days are torture. Bad air quality days are determined by the amount of ground ozone and fine particles in the air on a given day. I get an email the day before from Clean Air NY, if the air quality will be bad. I feel the difference on…

Nerve Fixing My Imaginary Fly Away

In January of 2008, I awoke one morning with some redness on the left side of my face and nose and the left side of my nose felt like I was being stung by fire ants. It turned out I had shingles and I caught it early enough that the anti viral medication worked to suppress it….

Prednisone For Life?

I have written a few post on prednisone, and all of its side effects. It is a very dangerous drug, but it is also, for now, one of the most effective in treating the symptoms of sarcoidosis. When I was told in 2006 that I will need to go on prednisone to treat my pulmonary…

Coming Soon On Kindle. Well, Maybe

I have an Amazon Kindle for about 18 months now, and just upgraded to a new Kindle 3. I was never much of a reader, but now that I have the Kindle, I read a lot more. I guess I just love electronics. Other than books, you can also subscribe to magazines, newspapers and blogs…

A Fish I Am

I grew up near the ocean, and as a child went almost every weekend, although I preferred to swim in the pool. I always loved to swim, and still do. I could and would literally stay in the water for hours at a stretch without coming out. When we did go to the beach, my…

Yep, I’m From Pluto

When I was a child, I always had an unconventional sense of humor that some people didn’t understand. I always told anyone that could not understand my humor a story that went like this. There were two souls in the soul bank,  located directly between Earth and Pluto. One soul was meant for Earth, the other…

Thank You, I Try. But….

I received an email from a reader thanking me for sharing my “Life With Sarcoidosis”, and they wished I would have more frequent posts. I am very happy that someone out there is benefiting from what little aspect of my life with the disease I share here, but as much as I would love to…

Where Has That Peace And Love Gone?

 Today is the anniversary of the attacks of 2001 and I am not going to rehash the events of that day. Thousands of other blogs and the media are taking care of that today. What I want to remember are the days and weeks that followed the horrible day. The days after the attacks saw this country…

Good News, Bad News, Good News, Bad News

I had my exercise stress test yesterday, one of the test I really dislike, but was happy to have it as it shows if I have any improvement in my heart function. Heart function when you have heart failure from cardiac sarcoidosis does not improve. At least that’s what I was told. It generally gets…

The Test That Stresses Me

My heart’s been acting up a little of late. My rate goes up a bit and I have been getting a few chest pains. My cardiologist thought it might be water retention, so he doubled my lasix for a week. Besdies peeing every five minutes, which is very inconvenient when you have to drive 3 hours out of…

Here We Go Again

Alma, Isabel, Floyd, Ivan and Earl. Some “friends” who never met each other, but I met them all. I am only now being introduced to Earl, but he seems to be a lot calmer than I expected so far. Still have to spend some time with him though.  Alma I met when I was 11, and she…