Hi and thanks so much for returning to my blog. RSS feed. Thanks for visiting!
Hey there everyone and good evening.
Check out my latest ” Lew Newmark: My Domestic Life Television ” episode below…
It is turning into another long week at the job, but as I said yesterday from my Facebook comment, I really had something to look forward to for today..no I don’t mean another day at the job!
I had the nice experience of speaking with a gentleman named Keith who lives in Australia via Skype, which is a great way to speak to anyone local, long distance, or across a continent.
Coming up on Lew Newmark: My Domestic Life will be some new articles focusing on Diabetes, another article about the side effects of Prednisone, an article comparing Immuran ( which I presently use ) and Celcept, and an article on Cortisol.
Also sometime next week I’ll be starting and finishing this month’s newsletter…which will feature an interview with Keith, who is going through the Marshall Protocol. Expect the newsletter to be sent out next Sunday, and I’m going to try to start doing some regular Lew Newmark: My Domestic Life TV You-Tube video again, as time allows.
And a few things about trying to do some fund raising for CSS before the year ends…
Yesterday I attended our company’s picnic event in Chester NY.
I actually did not want to go, but I was not going to give up half a day if I did not attend, so left a bit early from work, came home and showered to get the stench of the job off of me and then drove back to Chester to attend the picnic.
I arrived a little before 1 pm, after not being able to find the actual campground where we were supposed to be. Said my hello’s to those that I wanted to say hello to…so not too many hellos were said.
I found the eats, grabbed a hotdog and well cooked ( that’s WELL DONE ) hamburger and some bad cole slaw and a bottle of water.
I was just at ” Yahoo Answers ” and came across this question…
What is the difference between Angiitis and True Vasculitis?
The only thing that I found a bit out of ” Whack ” about this question is the term ” True Vasculitis? ”
I’m not joking around when I say in all earnestness, I hope that there is not a condition that mimics the vasculitis condition, as I think that most of this audience who have been diagnosed with a vascular condition, in most instances were not diagnosed quickly…and I would hate to think of what it would be like to have a condition that acts like vasculitis…but isn’t.
Here is how I answered this question…
” Hi there. I was diagnosed just over two years ago now with Churg Strauss Syndrome, a rare form of vasculitis and I talk about my condition on my blog, Lew Newmark: My Domestic Life at www.mlcss.com.
Okay, it’s called the Rare Diseases Clinical Research Network…
The Rare Diseases Clinical Research Network (RDCRN) is made up of 19 distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities.
I really need to say nothing more here than this…here is a chance for you and your family to become a regular participant in the whole process of understanding more about ” Your Particular Condition “.
Here is a case study report in pdf format that focuses on a subject who is a 51 year old non-smoker, with a history of mild asthma presented with an 8 month history of deteriorating exercise tolerance.
Below is a small portion of the report…
” He was no longer able to cycle more than
a few hundred metres, was dyspnoeic on climbing stairs,
and had been forced to give up his job as a postman.
Rheumatoid arthritis, affecting principally the right knee,
had been diagnosed on the basis of a synovial biopsy
and a positive rheumatoid factor 15 yrs previously. He
took paracetamol occasionally for the knee pain, but was
on no medication apart from inhaled salbutamol and
beclomethasone.
Examination revealed central cyanosis, no clubbing,
and a few crackles at both lung bases. There was a parasternal
heave but normal heart sounds, no increase in
venous pressure and blood pressure was 140/86 mmHg.
There was minimal evidence of rheumatoid arthritis, apart
from slight restriction of movement in the right knee.
Serial chest X-rays showed an increase in the size of
the cardiac silhouette and pulmonary arteries over a 5
year period, but no evidence of interstitial lung disease.
Electrocardiography (ECG) showed evidence of pulmonary
hypertension with “P” pulmonale and evidence of right
ventricular hypertrophy. ECG showed reasonable left
ventricular function but paradoxical septal movement.
The right atrium and ventricle were markedly dilated,
but there was little sign of ventricular hypertrophy and
no intracardiac shunt. Doppler measurements of the right
ventricular systolic pressure were not performed. Perfusion
lung scanning showed no evidence of thromboembolic
disease. Computerized tomographic scanning of the thorax
was normal with no evidence of emphysema, pleural,
or interstitial lung disease.
Lung function tests showed mild airflow obstruction
with forced expiratory volume in one second (FEV1)
2.9 l·s-1 (81% predicted), forced vital capacity (FVC) 4.6
l (98% pred), and FEV1/FVC ratio 66%. There was
evidence of hyperinflation and gas-trapping, with a total
lung capacity (TLC) 120% pred, and residual volume
(RV) 154% pred. Corrected gas transfer coefficient (KCO)
was grossly impaired at 13% pred. A flow-volume loop
suggested small airways disease, with forced mid-expiratory
flow (FEF25–75) only 28% pred. Arterial blood
gases breathing room air showed pH 7.45, arterial oxygen
tension (PaO2) 8.4 kPa, arterial carbon dioxide tension
(PaCO2) 3.2 kPa, and base excess 4.2 mmol·l-1. Sleep
studies excluded any form of sleep-disordered breathing.
Rheumatoid factor was positive in a titre of 1:640. Full
blood count was normal with an erythrocyte sedimentation
rate of 20 mm in the first hour. “
Well, the one thing that I immediately identified with in this report was the subject himself, as I am only two years older then he is right now, and I already have issues with my breathing capacity ( I try not to think too much about just how badly I am hurting myself by continuing to work at the fragrance factory that I work at now ) plus my issues with walking up and down the stairs of the factory all day long…and I won’t even mention the neuropathy issue that makes this activity all the better!
To read the full report please just click the link below
I’ve come to realize that ever since I’ve been on prednisone, that I have had some serious issues with my chompers ( that teeth for the rest of you out there ) and here is just another of those things that makes the use of prednisone a double edged sword.
While the dreaded prednisone keeps my condition in check, it also seems to have this one really terrible side effect…it slowly but surely seems to just eat away at our CALCIUM!
Before I get to my teeth issues let’s take a look at one of the main things that prednisone can cause…
Hi there and welcome to the fourth and final part in my series on Churg Strauss: Recovery Through The Mind/ Body Connection.
Before you read this final installment in my series, please read the previous articles in the series which you can find below through the following links…
Okay so this final part in my series is based upon Yaro Starak’s article titled “How I Realized My Sense Of Self And Why It Changed Me Forever ” and I want to delve into just how important the role of Faith or Spirituality can be to the Mind/ Body connection and Churg Strauss Recovery.
Ever watch the Travel Channel show ” Man Vs Food ?”…I wish I could eat the way that guy does on his shows..I couldn’t eat a third of what he puts into his stomach anymore.
Ever since I was diagnosed with CSS ( and possibly just a little before that ) I was having issues with my stomach.
But let me preface the above statement…I live with Acid Reflux, yeah like living with CSS wasn’t enough!
And just before my diagnosis of CSS, I was suffering from the acid reflux due in no small part to my having to take the wrong medication for the condition. I usually take ” Prevacid ” to help combat the effects of acid reflux, and up until January of 08 I was doing just fine with it, until my insurance would not cover the ” type ” of prevacid that I needed to use any longer.
What? What do you mean I’m moody?! I’m not moody…I’m on Prednisone!
Don’t laugh at the sentence, as this is something that some people experience while on prednisone.
At least for now, prednisone is the main ” Go To ” drug of choice when it comes to treating Churg Strauss and some of it’s other interesting complications such as Asthma.
From this point forward in this article, I am speaking to my own expierence so take this just for what it is…
I have been on this great little drug for better than two years now as I was actually using it to a much lesser extant a few months before I was diagnosed with CSS for the treatment of my Nasal Polyps, one of several pre cursors I have lived with over the years before my eventual CSS diagnosis and while I have always been somewhat ( stop laughing! ) moody, I have noticed that prednisone only makes the issue worse. But before I speak further to this let me just back this up just a bit with some other folks ( who will remain anonymous ) experiences in this area… WAIT! There is more to read… read on »
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Ever watch the Travel Channel show ” Man Vs Food ?”…I wish I could eat the way that guy does on his shows..I couldn’t eat a third of what he puts into his stomach anymore.
What? What do you mean I’m moody?! I’m not moody…I’m on Prednisone!
