It's a new year and something is clearly not working so I have had to
work on priorities -- again!! One of the hallmark failures of my life
is trying to save associations and relationships that haven't been
working. Last year, I wrote for a site called Examiner.com whose modus
operandi for recognition was SEO [stands for "search engine
optimization"] or ranking on Google search. Well, Google has been
revamping its algorithms for placement. What is an "algorithm"? Hell
if I know, but it has something to do with a math that I never got to
study......Calculus drove me so mad in college that I gave up after
that. Anyway to put it in layman's terms ["layman" includes me, by the
way], Google didn't want its searches to result in a searcher reaching
"content mills", which I think included Examiner and other sites I was
writing for. So they wanted authors to become noodges [Yiddish for
"pests"] and push articles on social networks like Facebook, Twitter and
Linked In. My topics were "Rego Park", "Food" and "Ethnic Cultures",
topics I am really into, but don't like to write about as an
obligation. And I was encouraged to keep blogs on those topics as a way
of getting readership. So at one point, I had up to four blogs.
Furthermore, I became very interested in the strategy of "food as
medicine" and got onto way too many mailing lists and activated way too
many Google alerts. Along the way, I helped to start a site called
"Nextdoor Rego Park" as part of a national network, and of that I am
proud..
What resulted from all this was a very full
mailbox, including every healthy eating mailing list I could find. At
one point toward the end of the year, I had 2000+ emails in my inbox and
emails from close friends got lost in the melée. On Black Friday and
Cyber Monday alone, I got about 800 emails from every online store I
ever shopped in. Add to that the usual depression I go through at the
holiday period -- even before ALS --and I had clutter beyond belief, as I
talked about in my last update.
I am so much more than
my ALS. A reader sent me a private email asking me to talk more about
the early days of my ALS and I told him I have a half-written book. His
email made me see the importance of finishing that book. Also, I wish
to tell more about the person I was before ALS, which was a blog at one
time called "Of Jews and Chinese Food". I had started a blog about
eating healthy, which drew a lot of traffic. I want to combine all of
this in my one blog here. It is all related. I have hypertension, high
cholesterol and hypothyroidism. What does all this have to do with
ALS? A lot, considering I used to work out at a gym, ride my bicycle
and/or go for long power walks before ALS landed me in a wheelchair.
Maybe I would have gotten these afflictions anyway as I aged. Who
knows? But I know the maxim of keeping the weight high in an ALS
patient, was one I followed at the beginning and gained a ton of weight
and developed these other lovely conditions. And it wasn't easy to drop
weight and change my way of eating to improve the situation, especially
when fried foods and sweets do a lot to smooth a lonely soul. And ALS is
a very lonely disease.
I don't believe in New Years
resolutions, but managing my fatigue has to be a goal in the future. My
talk of healthy food on this blog, includes those who eat by feeding
tube, since many healthy foods can be liquidized and go down the tube.
And I never mean to insinuate that I have a cure for ALS although I have
to credit my 10 years since diagnosis [I was diagnosed January, 2004] with more than luck or being "blessed".To claim that I am
"blessed" not only presupposes a lot more faith in religion than I
have, but assumes those patients before me who died quickly were
"damned". Why should a bunch of patients, many surrounded by loving
families, be damned while I am "blessed"? That doesn't make sense. We
are no closer to a cure than 150 years ago when this disease was
discovered in France. As an "orphan disease", ALS pins its best hopes
on finding treatments that already work for other diseases and can be
prescribed "off-label" for ALS. And -- not that I wish this disease on
anyone -- the fact that football players and members of the armed forces
are disproportionately diagnosed with ALS more lately, might just bring
this disease out of "orphan" status. You see, other than Rilutek®, we
have no other drug or treatment for ALS. It took many years for
Rilutek® to go generic [Riluzole] so until recently if your insurance
didn't cover it, it cost about $900 a month. I have learned that the
reason "Big Pharma" charges so much money for drugs is because they have
to make the money back, that they spent for R&D [research and
development] and other factors that went into the drug -- like
advertising. So, either a lot of consumers have to purchase the drug,
or they have to charge big money. And the reason supplements and food
cannot be prescribed as drugs [and regulated by the FDA]? Well, only
synthetic drugs can be patented. I am currently trying to save enough
money to take nutrition courses online. Until then, I am devouring
everything I can find on the subject so I can share the information
here. One day, we will find drugs that exist already that are
beneficial for ALS, or enough people will be able to benefit from a new
drug. In the meantime, we have to take care of our immune systems and
other bodily functions, so as to have the strength to LIVE with ALS and
not DIE from it. One day, when I was first diagnosed ten years ago, I
asked an old friend to come over and spend some time because I was no
longer able to visit her ["visitability" is a topic I will talk about in
future]. Anyway she said "What will we talk about? I don't want to
talk about a disease", and I said "There are thousands of other topics.
I don't want to talk about my disease either". So there you have it:
let's not only talk about ALS, but the bigger picture -- how we can live in the world as disabled people who are still people, just managing a disease.
I could go on forever, but I composed this long blog post on and off during one day of daylight hours and the fatigue is setting in. Peace and health to all.
