tag:blogger.com,1999:blog-45727630634676994742026-10-18T03:34:02.862-04:00CHRONIC ILLNESS 🦋 DISABILITY 🦋 INVISIBLE ILLNESS 🦋 RARE DISEASE 🦋 YOU ARE NOT ALONEUnknownnoreply@blogger.comBlogger137125tag:blogger.com,1999:blog-4572763063467699474.post-87000505739840864132021-12-31T23:55:00.052-05:002026-10-17T21:17:12.372-04:00

For over a decade, I have been active in the arthritis, sarcoidosis, and rare disease communities, sharing my experience and insight to advocate, educate, and support others. This includes speaking engagements, legislative advocacy, fundraising/awareness events, advocate training, and more. These days, I focus mainly on writing: sharing my own story through my column at Sarcoidosis News, and

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-14037901198539780772021-06-26T02:31:00.002-04:002021-12-30T15:23:08.810-05:00

Like 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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-20272489076656258642021-02-11T20:14:00.005-05:002021-12-30T15:23:48.006-05:00

A 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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-6992357731947954252020-10-19T16:42:00.003-04:002026-10-18T01:49:33.582-04:00

This 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 (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 alas, life gets in

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-36858810076350641142019-10-02T16:58:00.002-04:002021-12-30T15:24:44.255-05:00

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 a

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-67203592941267972132019-07-24T14:39:00.006-04:002021-12-30T15:25:20.744-05:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-77237782147715500052019-04-11T04:58:00.001-04:002019-10-15T15:49:04.710-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-83179283700745887822018-09-01T00:09:00.001-04:002019-10-15T15:52:08.419-04:00

*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,

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-73174053081265505922018-08-03T00:36:00.001-04:002022-10-18T23:15:47.849-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-71022286518343552792018-03-12T00:14:00.001-04:002018-06-15T13:23:10.639-04:00

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.

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-39848757250389590882017-11-15T22:53:00.001-05:002018-06-15T13:22:53.535-04:00

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. 

Unknownnoreply@blogger.comStatue 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-849914116275357262017-06-27T18:34:00.000-04:002018-06-15T13:22:22.823-04:00

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. ********************************************

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-2601068205760094482017-06-25T01:37:00.000-04:002018-06-15T13:21:40.423-04:00

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? *

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-79994554844797288552017-05-18T20:36:00.001-04:002018-06-15T13:21:17.081-04:00

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,

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-32310930750640984372017-05-01T20:48:00.004-04:002018-05-01T10:11:44.243-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-1077518825916867912017-04-29T14:53:00.000-04:002017-04-29T14:53:16.906-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-906028637615071052017-04-16T03:14:00.002-04:002025-08-03T10:24:06.079-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-26494055193902683762017-04-01T08:30:00.000-04:002017-04-16T02:58:49.446-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-81954001074121424612016-08-21T13:48:00.000-04:002016-08-21T14:28:07.326-04:00

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 best

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-27591638075603138292016-05-26T15:00:00.000-04:002016-08-21T13:52:27.854-04:00

... 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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-26988387429134124342016-05-19T00:49:00.003-04:002016-08-21T13:53:23.950-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-47514502757594538582016-05-07T21:14:00.001-04:002016-08-21T13:54:54.412-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-76701880950233415602015-11-19T11:52:00.000-05:002016-08-21T13:55:44.756-04:00

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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-19448447114623079802015-11-07T13:53:00.000-05:002026-10-18T01:31:40.703-04:00

They say time flies when you’re having fun. Well, let me tell you, time has moved 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

Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4572763063467699474.post-15278652017811615442015-10-01T15:38:00.000-04:002015-10-03T14:23:17.155-04:00

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

Unknownnoreply@blogger.com