tag:blogger.com,1999:blog-45727630634676994742024-03-23T06:14:38.027-04:00Float Like a ButtahflyGive up being a caterpillar.Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-4572763063467699474.post-87000505739840864132021-12-31T23:55:00.038-05:002023-09-18T15:33:40.967-04:00HomeWelcome! I'm so glad you're here. I'm just a happy hippie trying to do some good in the world, living with a bunch of chronic illnesses that only think they can stop me. I'm doing what I can to educate, support, and advocate for the chronic illness community - that includes those with rare, disabling, and invisible illnesses, too.Float with me! Take a look around - you'll findKerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-14037901198539780772021-06-26T02:31:00.002-04:002021-12-30T15:23:08.810-05:00One Small StepLike so many others in the chronic illness community, I've been super anxious about going anywhere in public. Especially as everything is opening & mask mandates are dropped (prematurely, if you ask me), there's the legitimate fear that the unmasked all around us may be unvaccinated, exposed, even carriers of the coronavirus, and we the immunocompromised are at even greater risk.At the same Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-20272489076656258642021-02-11T20:14:00.005-05:002021-12-30T15:23:48.006-05:00Vaccine VariablesA few days ago, they announced
that in NY, people with a list of conditions would be eligible to receive the vaccine
as of February15. I meet a few of those criteria, so I’m certainly eligible. My rheumatologist said I should definitely
get the vaccine, given that I'm immunocompromised and high risk for not only contracting
the virus, but for a more severe outcome if I do. So I was Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-6992357731947954252020-10-19T16:42:00.003-04:002021-12-30T15:24:25.710-05:00OverwhelmedThis is not what I wanted to
write.
I was actually planning to write
a blog this week (yes, I know, it’s been over a year – I’ve wanted to, a lot,
but … well … life gets in the way). But
this week was actually 5 years since I was first (finally) diagnosed with sarcoidosis, and I wanted to write about what that diagnosis has done for me,
and how much my life has changed since then.
But Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-36858810076350641142019-10-02T16:58:00.002-04:002021-12-30T15:24:44.255-05:00Patients Need Protections in Mid-Year Formulary Bill (A2849)For most of my life, I was an
overachiever: I excelled in school, worked multiple jobs, and volunteered to
help others as often as possible. But in
my early 30s, I was forced to slow down. I began to experience a mysterious combination
of symptoms that no one could explain: pain from head to toe, debilitating fatigue,
weakness, dizziness, nausea, and later, severe joint swelling and aKerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-67203592941267972132019-07-24T14:39:00.006-04:002021-12-30T15:25:20.744-05:00An Honor to Be Nominated
Nominations:
Patient Leader Hero
and Best in Show: Blog
For the third year in a row, I have been nominated for a WEGO Health Award
(two, actually!).
The WEGO Health Awards program was created to recognize and honor those
making a difference in the online health community. It provides the opportunity
for community members to thank and support the Patient Leaders and
patient-centric Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-77237782147715500052019-04-11T04:58:00.001-04:002019-10-15T15:49:04.710-04:00SAM Slacker
It’s Sarcoidosis Awareness Month,
and I’ve been slacking.
Don’t get me wrong – I’ve been
working my butt off all month, and for several months before this (and yet it’s still huge! But that’s another issue for another day lol). We’re not even halfway through Sarcoidosis
Awareness Month, and already I’ve coordinated a group to raise awareness as
part of the live audience of a Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-83179283700745887822018-09-01T00:09:00.001-04:002019-10-15T15:52:08.419-04:00Always Aware of My Chronic Pain
*Note: I was originally asked to write this piece for the Foundation for Sarcoidosis Research blog, in recognition of Chronic Pain Awareness Month.
When most people think of sarcoidosis,
what usually comes to mind is … ok, let’s start by correcting that – most people don’t ever think of
sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-73174053081265505922018-08-03T00:36:00.001-04:002022-10-18T23:15:47.849-04:00When "Accessibility" Isn't Accessible
Had to take these stairs to get to the "Washroom"
I went out to eat the other day, and while I was there I had to use the restroom, which was up a few stairs: not a full flight, probably somewhere between 5 & 10 steps. I typically use a cane for support due to inflammatory arthritis from a rare disease called sarcoidosis. Still, I figured I would be able to manage this, even though Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-71022286518343552792018-03-12T00:14:00.001-04:002018-06-15T13:23:10.639-04:00KISS: Kick In to Stop Sarcoidosis
Everyone knows that it’s not easy
living with sarcoidosis. I take that back. Hardly anyone
knows. In fact, most people have never even heard of it, and don’t
understand when we try to explain (“at least it’s not cancer”).
That just makes it even harder for us to get through life with this
disease. It can make us feel so alone.
I know it was like that for me.Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-39848757250389590882017-11-15T22:53:00.001-05:002018-06-15T13:22:53.535-04:00Liberty Enlightening the World
It’s
funny – people around the world dream of coming to New York City someday, and
have a list of the major landmarks they want to visit when they get there … but
those of us who have grown up in the NYC area tend to take those landmarks for
granted. In fact, many of us never even go to those “must see” sites, unless we’re
tagging along with friends or family visiting from out of town.
Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0Statue of Liberty National Monument, New York, NY 10004, USA40.6892494 -74.044500416.3638464 -115.3530944 65.0146524 -32.735906400000005tag:blogger.com,1999:blog-4572763063467699474.post-849914116275357262017-06-27T18:34:00.000-04:002018-06-15T13:22:22.823-04:00Why I Advocate
Note: This piece comes at the request of the Arthritis Foundation. I was asked to write about my experience with its Ambassador Program, and my success with one of our recent tasks. I am honored to have been asked, and hope the following does the program justice. For more information, visit arthritis.org/advocate/ambassador-program.
********************************************Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-2601068205760094482017-06-25T01:37:00.000-04:002018-06-15T13:21:40.423-04:00Not a Drag
Note: This piece was originally written in response to the following writing challenge, offered by The Mighty:
We often read comments in
our community about people worrying their condition will prevent them from
being in a relationship or finding love, even if that’s not truly the case.
What would you say to someone else with your or a loved one’s diagnosis who
also feels this way?
*Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-79994554844797288552017-05-18T20:36:00.001-04:002018-06-15T13:21:17.081-04:00The 5 People
A
friend of mine recently posted an interesting quote on Facebook. Now that’s certainly nothing to write home
(or write blog) about – every day we see dozens of quotes meant to make us
think introspectively for a second and then keep scrolling. Usually, we skip the introspection and just
scroll on. Occasionally we comment and
move on, but the point is that no matter what we do,Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-32310930750640984372017-05-01T20:48:00.004-04:002018-05-01T10:11:44.243-04:00All About Awareness
It’s
Arthritis Awareness Month! This is a big month for me – not only does
this month focus on multiple conditions that I have, but it does so with the
support of multiple organizations that I volunteer with. So without further ado, let’s talk about
arthritis!
For
starters, the most important thing to be aware
of is that arthritis is an umbrella term that covers over 100 Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-1077518825916867912017-04-29T14:53:00.000-04:002017-04-29T14:53:16.906-04:00Lucky?
I
have always been a positive person. I’m an
eternal optimist, always holding on to hope, always looking to focus on the
silver lining no matter how cloudy life gets.
Sometimes I put pressure on myself to keep that up – partly because I
just prefer it to being sad, partly because I feel like a hypocrite when I don’t,
and partly as a matter of self-preservation.
Even (or Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-906028637615071052017-04-16T03:14:00.001-04:002017-04-16T11:35:46.784-04:00Awareness(shhh)
When my mother
was diagnosed with thyroid cancer over 20 years ago, she never really talked about
it. She didn’t want to make a big deal
of it, didn’t want to worry my grandmother or anyone else. She never even really said the C word until
years later. She just had “a thing taken
care of,” and that was the end of it.
Even when we started doing events with the Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-26494055193902683762017-04-01T08:30:00.000-04:002017-04-16T02:58:49.446-04:00April is SAM!
Living with a chronic illness
is never easy – it can rob you of your abilities, your independence, your sense
of self … not to mention the pain and other physical symptoms. When your illness is cancer, MS, or another
well-known condition, it usually brings with it sympathy and support from those
around you: most people have heard of
these diseases, and have at least a basic Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-81954001074121424612016-08-21T13:48:00.000-04:002016-08-21T14:28:07.326-04:00Not a Competition
For the past couple of weeks, people around the
world have been watching the 2016 Summer Olympics. Even if we don’t watch the actual games, we’re
bombarded with news articles and social media posts praising all the record
breakers and medal winners. We admire
the athletes’ competitive spirit, and root for our favorites (or our country)
to win, win, win.
That drive to be the bestKerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-27591638075603138292016-05-26T15:00:00.000-04:002016-08-21T13:52:27.854-04:00Who Am I Now?
... aren't I?
Soul-crushing. That’s really the only word I can use to
describe this morning. I had my
disability (appeal) hearing today, and it just goes against everything that I
am … except that it is what I am now.
I’ve been having a really hard
time accepting my disability lately. Maybe
I’m just living in denial, but I like it there - focusing on the positives, the
Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-26988387429134124342016-05-19T00:49:00.003-04:002016-08-21T13:53:23.950-04:00Are You Aware?
You
may be wondering how it is that during Sarcoidosis Awareness Month I posted
something (sometimes more than one something) every day about my illness … and yet now that we’re more than
halfway through Arthritis Awareness
Month (and Fibromyalgia Awareness Month) – the conditions I’ve been living
with long before I’d ever even heard of Sarcoidosis, let alone been diagnosed
with it – the only Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-47514502757594538582016-05-07T21:14:00.001-04:002016-08-21T13:54:54.412-04:00The Power of Purple
I recently discovered that April 2016 was Sarcoidosis
Awareness Month. Since that is my
latest diagnosis, and since no one I know had even heard of the disease
before I was diagnosed, I knew that Sarcoidosis Awareness was definitely
lacking, and an important place for me to direct my energy. I discovered a few activities that were right
up my alley, including a Sarcoidosis Awareness Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-76701880950233415602015-11-19T11:52:00.000-05:002016-08-21T13:55:44.756-04:00Gratitude, Tempered
The symbol is a start,
but it's not enough
My thoughts are with Paris
... and with Nigeria
... and with Baghdad
... and with Lebanon
... and Israel
... and Camaroon
... and Chad
... and Egypt
... and Somalia
... and all the other areas that have been attacked recently, and continue to be targeted and live in fear.
Now's the time, leading up to Thanksgiving, when we Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-19448447114623079802015-11-07T13:53:00.000-05:002017-05-10T22:33:01.590-04:00When Bad News is Good News
They say time flies when you’re
having fun … well let me tell you, time has been like a turtle crawling through
molasses for me. There’s been a lot of
change – with my medications, my symptoms, my diagnoses (see the updated What’s Wrong page), and my
medications again. Honestly, the past
couple of weeks have been the worst it’s ever been … but Silver Lining Girl
realizes that may Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0tag:blogger.com,1999:blog-4572763063467699474.post-15278652017811615442015-10-01T15:38:00.000-04:002015-10-03T14:23:17.155-04:0030 Things
In case you didn't know, this week (Sept. 28 - Oct. 4) is Invisible Illness Awareness Week. I'm guessing that if you're not already in the chronic illness community (and I'm hoping you're not, because that would mean you or someone very close to you is chronically ill), then you didn't know. In fact, if you're not already living with one, chances are you really don't even Kerryhttp://www.blogger.com/profile/15283935006920310608noreply@blogger.com0