Wednesday, October 2, 2019

Patients 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 a variety of skin reactions.  It took 8 years for doctors to figure out what was going on, with countless tests, misdiagnoses, and treatments that did not work along the way. Eventually I was diagnosed with a rare inflammatory disease called sarcoidosis.

At its worst, this condition left me completely incapacitated: the arthritis in my hands, elbows, back, hips, knees, ankles, and feet was so severe that I could hardly move. I needed support to stand, shower, and dress; at times I couldn’t even hold a phone in my hand to ask for help. When we finally found the right treatment, my world changed. Literally overnight, there was a noticeable difference, and I continued to improve for weeks and months. There is no cure for sarcoidosis, but thanks to my miracle drug I’m able to participate in, and contribute to, my life and my community.
My miracle drug

Wednesday, July 24, 2019

An 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 initiatives they admire. (wegohealth.com)
Though it sounds cliché, it is an honor to be nominated for these awards.

I say this not to brag, not even to ask for your endorsement.  I am truly grateful for the nominations, and so glad to know that my friends and fellow warriors see me this way.  That is what I’m always striving towards – not the recognition for myself, but to make that kind of impact on others who need it.  Seriously, my heart is overflowing with this idea.

But if I’m being totally honest (and what else is a blog for, if not total honesty?), what I feel most of all is … unworthy.  Perhaps in previous years I could understand the nominations, could even almost believe that I deserved them (not to win, mind you, but at least to be nominated).  But looking back on the past year, it’s just been a mess, and I don’t feel like I’ve lived up to it. 

Thursday, April 11, 2019

SAM 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 talk show, hosted a Sarcoidosis Walk ‘n’ Roll to raise awareness, raise funds, and show all Sarcoidosis Warriors that they are not alone in this, and I’m currently preparing my agenda for a sarcoidosis support group meeting this coming weekend.  I’m also registered for 2 other Sarc Walks in New York over the next 2 weekends, and the national FSR event in New Orleans the week after that. And yet I feel like I’m slacking.

Saturday, September 1, 2018

Always 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, usually because someone they know has been diagnosed, they most likely think about breathing problems.  That makes sense, since 90% of people with sarcoidosis have it in their lungs.  This can lead to severe bouts of pneumonia, pulmonary fibrosis (scarring), and more.

I do have sarcoidosis in my lungs – that’s actually what helped lead to my diagnosis, after nearly 8 years of trying to figure out what was wrong with me.  But (knock wood) my breathing issues are relatively minor.  The most severe symptom I have, the one that dozens of doctors and dozens of treatments have been unable to adequately contain, is chronic pain.  Because sarcoidosis can affect nearly any organ in the body and is frequently accompanied by a number of comorbidities and/or complications, sarcoidosis patients often live with pain in a variety of forms, severities, and parts of the body.

Friday, August 3, 2018

Accessibility at a Bare Minimum

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 stairs usually hurt my joints more than regular walking.

I looked for a ramp afterwards, because there had to be a way for someone who cannot do stairs at all to get there, right? Right.  I did not find a ramp; instead, what I saw was this.