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.

For me, that literally means pain from head to toe.  I have been living with a few different types of headaches for most of my life: these include tension headaches since high school, migraines since college, and within the past decade, sinus headaches from chronic sinusitis, and more headaches that come as a side effect of medication.  I  also have fibromyalgia, which is "characterized by widespread musculoskeletal pain," among other symptoms, and have suffered with painful endometriosis  since college, and irritable bowel syndrome since long before they even called it IBS.   Since sarcoidosis is an inflammatory disease, the chronic inflammation causes painful arthritis, most often in my ankles, knees, hips, and hands, as well as muscle aches most often in my neck, back, and arms.  As sarcoidosis affects my nerves, the neuropathy causes a painful pins and needles feeling in my hands, feet, and lower legs, a sharper pain that shoots down from my hips, and back pain that can be completely incapacitating.  Even cutaneous (skin) sarcoidosis causes erythema nodosum, painful bumps that develop on my legs.  I am in pain every minute of every day; it just varies in location and severity.

The pain can be debilitating.  There are days when I can’t get out of bed for an hour after I wake up, and moments when I am literally stopped in my tracks from a sudden burst of pain while I’m out.  But the pain itself isn’t always the worst part.  Because pain is invisible, sarcoidosis patients like me are often told that we don’t look sick.  This is actually a double-edged sword, though.  While I’m glad I don’t typically go around looking like an extra from The Walking Dead, people often have difficulty believing what they cannot see.  Since we look fine, people assume that we are fine – and often do not fully understand or believe how much we are truly suffering.  This can lead to all sorts of problems: with friends, when we have to cancel plans; with family, when we have to miss special occasions; with employers, when we have to call in sick so often; with Social Security, when we have to apply for Disability; even with (some) doctors, when we try to get some much needed relief.

September is
Chronic Pain Awareness Month
That’s why Chronic Pain Awareness Month is so important.  First and foremost, it is an opportunity for chronic pain patients to share our experiences, to help educate not only those closest to us, but anyone who is willing to listen (or read).  The more we share each other’s stories and raise awareness, the better we can support the next person who is suffering from chronic pain and its societal consequences.

Speaking of the next person … that’s the other great thing about Chronic Pain Awareness Month – sharing these stories helps to connect us with the next person who is suffering.  Living with chronic pain that affects every aspect of our lives can be incredibly isolating.  It’s easy to feel like we’re all alone, that no one else understands what we’re going through.  But when we raise awareness, each of us gets to see that we are not alone.  In fact, a recent study from the National Institutes of Health reports that 11% of Americans (that’s around 25 million people) suffer from chronic pain.  Through blogs, social media, patient-centered organizations and support groups (both in person and online), we find people we can turn to with questions, ideas, joys, and sorrows.  We are no longer alone, or just one of 25 million suffering in silence.  We are in this together; we are the chronic pain community.

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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.

If you can't tell what this is, it's an industrial wheelchair lift.  Like a motorized dumbwaiter more than an elevator, one that requires a second person with a key to operate it.  So if someone in a wheelchair has to go to the bathroom, he has to first get staff's attention, and say (like a child in kindergarten), "excuse me, I have to go to the bathroom."  

Chances are that staff person won't have the key, so she'll have to go find the key, or find the person with the key, who will likely finish whatever she's doing before attending to this customer.  Then there's the big production (which draws the attention of half the restaurant) of opening the lift and maneuvering the customer into it (or staring while the customer maneuvers himself into the tiny space).  These units often beep loudly while in motion (drawing the attention of anyone left in the restaurant who isn't already looking).  

Right side: stairs
Left side: disability spectacle
After using the facilities, the customer then has to either wait until someone makes eye contact from the main floor, or yell out to find someone (drawing everyone's attention, once again), and repeat the painful process once again.

This is not acceptable.

It may technically be compliant with ADA regulations, but it is not right.  It robs a person with a disability of the ability to do something as simple as going to the bathroom by himself.  It not only takes away his independence, but robs him of his dignity, making him a spectacle for everyone to watch.  And it takes a long time, which is not always something one can afford when waiting to use the bathroom.  This may be legal, but it is not good enough.

I had to use one of these lifts once, while I was in Washington, DC to meet with my US Senators and House Representatives to discuss legislative issues related to health care.  Those days on Capitol Hill require a LOT of walking; I would not be able to participate if not for my mobility scooter.  If this lift situation had arisen on my way to a meeting, I would surely have brought it up.  Who am I kidding?  If this had happened on my way to a meeting, I would not have made it to the meeting.  

I'd found the sign indicating an accessible exit,
but all I saw at first were stairs.
I had to wait over 15 minutes for someone to come with a key to operate the lift, and it took another 10 minutes for me to get down - and that's after spending a good 10 minutes trying to find an "accessible" exit, 5 minutes by the lift, trying to get anyone's attention/help, and 5 minutes with a kind passerby who tried pressing every button (and several combinations) to try to get the lift to work for me.  

I decided right then that I'd never go through that again.  I would sooner take the 20 minute path back to the elevator, through the basement, onboard the tram, through another basement corridor, to the exit in another (attached) building than go through that again.  If I were in a restaurant with a lift like that, I'd sooner use the bathroom in the coffee shop across the street.  Better yet - I won't be in that restaurant again.

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Monday, March 12, 2018

KISS: 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.

Wednesday, November 15, 2017

Liberty 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. 

Tuesday, June 27, 2017

Why 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

Nearly 10 years ago, I began feeling a variety of symptoms that didn’t seem to make much sense: I was exhausted and sore without doing anything strenuous, frequently weak, dizzy, and nauseous, I couldn’t sleep.  I soon learned about a condition called Fibromyalgia, but it took 4 years and a dozen doctors before one believed me and diagnosed it.  Over that time, I developed new symptoms, including skin rashes and painful swollen joints.  It took another 4 years of rotating misdiagnoses before my doctors realized that this inflammatory arthritis was part of a disease called Sarcoidosis.  These illnesses have taken so much away from me: I’m no longer able to work, I have to walk with a cane for short distances and use a scooter for longer ones, and I have to cancel more plans than I can keep.  But the Arthritis Foundation has given back so much.