About This Blog

Hi and thanks so much for returning to my blog. RSS feed. Thanks for visiting!

Hi There!

My name is Lew Newmark

and I want to welcome you to my blog

Lew Newmark: My Domestic Life.

My blog is here to to give you some insight

and facts about my disease, Churg Strauss

Syndrome, and to also talk about other

vascular diseases and also about health

related topics. 

I am 52 years young, married to my beautiful wife of 27 years Susan.

I have a daughter, Samantha, who is always the apple of her father’s eye.

I have a dog named Star, who kind of looks like ” Falcor ” from The Never Ending Story

I have a cat named Oscar, who as far as cats go is typical except for his Rodent Ulcer

I have a home somewhere in upstate NY…

My Story

It begins back around 16 years ago. I had just started my job with the company I presently work for ( which I will not mention here ) and I seemed to have had a reaction to a mixture that was mixed for a carpet cleaner, which was obviously used to clean the carpets in the factory offices. The reaction was so bad, I found myself at a local hospital, having a chest x-ray.  With the diagnosis of Sarcoidosis,  brought about due to the chest x ray which showed what might have been cancer. A lung biopsy was performed, and the result was Sarcoidosis.

I started using an inhaler ( I forget which one now ) for about a year and a half and my symptoms subsided, so I stopped using an inhaler. I also stopped going to see the doctor ( actually specialist ) and was fine for several years.

For several years, I continued to have problems with my lungs, mostly during the winter months, when my lungs would just become filled with mucous.

In October of 07, I started to experience problems with my nose. At first, I would just have some problems breathing, and I started to use nasal strips, and this seemed to alleviate the problem at first, but then the problem became chronic. I had started to use nasal sprays to keep my nasal passages open, which led to my having chronic sinusitis.

I went to see a nasal specialist near the end of October, and after an examination was told that I had nasal polyps.

I was put on prednisone, on a taper schedule that would last for almost a month. The prednisone worked and the polyps were gone for the moment.

This would be my first time using prednisone, but I would later find it would not be my last.

Last year, my asthma condition started to get progressively worse. I was seeing a specialist for the asthma. I was having lung tests performed every few weeks. I was prescribed advair, at first at the smaller dosage, and than about two months later the prescription strength was increased.

The asthma had gotten so bad, that it was waking me up in the middle of the night.

I started to keep my inhaler at my bedside just in case for emergencies, of which I wound up having three, where I almost bought the farm due to my not being able to breath.

The specialist who at the time was treating me, was just doing the usual things with someone who had chronic asthma…except ordering a ct scan of my chest.

I was also at the time dealing with acid reflux, which was a problem only due to the fact that my insurance would not cover the maintenance med that I was taking, which was prevacide.

Here’s where I shorten the story just a bit…in May, I found myself admitted into the hospital with phenomia in my lower left lung, and the acid reflux still raging.

After two weeks ( more or less ) I was released and in decent health….Memorial Day weekend, I was awoken by my stomach at five am, with intense pain and a high spiking fever. Sunday I was back in the hospital, I was diagnosed with having c-diff, and some kidney stones ( two to be exact ) and a hidden little problem that I wasn’t aware of at first….increased whit blood cell counts.

After being in the hospital for a week, a kidney biopsy was performed and sent for testing, and the results were a diagnosis of a condition that I had never heard of before…Churg Strauss Syndrome.

Two weeks later, I was released from the hospital and sent home with twelve different meds including new prescriptions for Cytoxan, and a tapered prescription for prednisone, this was in the middle of June.

The present….
after a few months of continued progress, I am only on three meds as of this writing…

Prednisone at around 10mgs
Immuran at 20mgs
and I’m still on the advair, which I actually just started to use again due to my asthma systems starting to emerge again.

This is my story, my beginning if you will with a disease that I have never heard of before, but am becoming very aquainted with at this time.

There is no cure for css, and while there is a mortality rate associated with this disease, the best that I and others like myself who suffer with this can hope for is remission of the condition thru drugs, rest and doctors who actually know how to work with the disease…and of course there is always hope

And I was diagnosed as being Pre-Diabetic back in August of 2008.

I work a full time job, and I’m also a blogger ( as you can tell from this blog! ) and my first blog is called Fanboy@50, and I have just been blogging for a bit more than a year with Fanboy.

I also run an online Ebay store, play the Drums ( Thank You Neil Peart! ) read tons of comics ( yes, I know I’m 51 and I still love to read a good comic! ) play the occasional video game ( Guitar Hero, Soul Calibur IV ) and I love my Amazon Kindle!

To contact me via email..

snewmark@hvc.rr.com & zipvicious@yahoo.com

You can also follow me on Twitter, just look up ” Animekid 50 ”

And you can also find me on Face Book, so just drop me a line and say hi, and if you have any questions, I’ll do my best to answer you as soon as possible and as honestly as I can.

Sincerely Yours

Lew Newmark