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.



Every day, Facebook gives me a reminder of what a slacker I am.  I mean, it doesn’t say that exactly, but that’s the feeling I get when I see the On This Day reminders of what I did for the past 3 years during Sarcoidosis Awareness Month. 
Purple boots
to match my
purple scarf
  • In 2016, I took the #SarcoidosisPurpleChallenge, and posted pictures every day of  something purple that I was wearing or using; as often as possible, I included a note about why or how that related to this crazy disease I’d recently been diagnosed with after 8 long years of trying to figure out what was wrong with me.
  • In 2017 & 2018, I posted some fact, statistic, description, article, or quote about sarcoidosis every day.  The goal was to not just raise awareness about a name that no one could pronounce, but to really educate people about what sarcoidosis is and how it affects people.

But this year, I just haven’t been doing that.  And the reality is that the reason I haven’t done as much is the reason I need to, the reason I can’t, the reason I want to and don’t at the same time. 

I’ve just been so exhausted for weeks.  Months, really.  And when I say exhausted, it’s not just like when you stay up too late or don’t have your coffee in the morning.  The fatigue that comes from a systemic inflammatory disease like sarcoidosis can be completely disabling.  Just getting from the bed to the couch can take all the energy I can muster some days.  If I can gather the strength to go into the kitchen (an hour or two later), I realize that preparing an actual meal is just more than I can handle right now.  And not eating well certainly contributes to the weakness, but it becomes a self-perpetuating cycle, as there’s now even less energy, so it’s just not possible to prepare a meal that might give me strength.  Honestly, I’m sitting on the couch right now, feeling nauseous, and looking at the bottle of ginger ale on the other side of the room.  But I’m waiting ‘til my husband gets home and can bring it to me, because I just can’t get up right now.

What really stinks is that there’s a mental exhaustion that goes along with it, too.  I try to tell myself that once I’ve made it to the couch, I can just get on the computer and do a million things – I don’t have to get up or do anything physical.  But when it hits this hard, it’s like I’m in a daze.  I can stare at a blank screen without an idea of what I was planning to write, or I can read an email 3 times and still not know what it said (let’s not get into how long it’s taking to write this piece).  So I haven’t had the strength/energy/time/focus to post something about sarcoidosis every day, and for that, I feel like a slacker.

I go on to Facebook or Twitter for a little while most days, and my feed is flooded with sarcoidosis posts: some Sarc Warriors posting facts every day, others posting pictures as they get their infusions or go in to the hospital, and other FSR Ambassadors sharing their efforts, getting proclamations about Sarcoidosis Awareness Month or getting landmarks lit up purple for Sarcoidosis Awareness Day.  (Ok, technically, I’m getting a proclamation for my county, too, but it didn’t come when I was expecting it, so I guess I didn’t count it as an accomplishment.)  I see everyone else posting every day to help people really understand this disease better, and I feel like I’m not doing that, so I’m slacking.
See more post-event thoughts
I have been posting some, but it’s mainly been about the trip to the city for the show, the Walk ‘n’ Roll fundraiser/awareness event, or the upcoming support group meeting.  So I feel like that’s raising awareness about events, supports, & resources, but not exactly educating about the disease itself.  And I really want to do that too … but … then I just can’t focus enough to get to that one more thing on my too-long-but-forever-growing to-do list.

Over the past several months, I’ve had a lot of running around to do, and I’ve been sick a LOT.  Yes, I’m chronically ill, so technically I’m always sick … but I’ve been extra sick, too.  From an upper respiratory thing that worked its way down to my chest at the start of my vacation in October-November to a post-travel flare that took me completely out of commission until early December, and sick again to miss Christmas with the family and my January support group meeting (thank goodness I was able to ask another group member to take the lead for the meeting that evening).  There were even days I was too sick to go to the doctor (yes, that’s a thing), and had to reschedule appointments.  I pooled all the strength I could (with the support of my incredible husband) to get through Ambassador/Advocacy trips to Washington, DC in February and March, but really paid the price for it and could barely function in between or afterwards.  I lost weeks at a time to uncontrollable sweats, chills, aches, dizziness, weakness, nausea, and unbearable pain.  And all I could think about was how much I wasn’t doing for my upcoming events.  Last month, I had to miss the blood drive that I’d been planning for months (fortunately, my mom was able to take the lead on that in my absence … but I still haven’t gotten over the guilt of not being there myself).  When I was asked to speak at another event early this month and actually passed, everyone close to me knew something was really wrong (yet I still feel awful about it).

www.stopsarcoidosis.org/advanced
So … I may not be posting a fact every day, but I’m sharing this with you – not to make excuses for the things I have not done, but to try to give a realistic picture of what it can be like to live with a disease like sarcoidosis.  Some people have barely noticeable symptoms, and go into remission quickly.  Others spend weeks in hospitals, with numerous treatments, surgeries, even lung or heart transplants.  Some even lose their battle with this disease, because there just isn’t enough information out there.  And because the disease causes widespread inflammation and the treatments lower our immune system (which is supposed to keep you healthy, but goes haywire with us), there’s no such thing as “just” a cold.  We’re more susceptible to infections, they can affect us more severely, and we don’t have the natural ability to fight them like healthy people do.  There really is no telling how we’ll feel from one day to the next, whether we’ll achieve remission, or the sarcoidosis will progress to more and more organs.  We don’t know what treatments will work, whether we’ll develop the side effects, or how long they’ll last (not to mention whether insurance changes will mean we can no longer afford the treatments that do work), so it’s easy to fall into a depression and lose ourselves.  I generally try to focus on what I have rather than what I don’t, what I still can do, rather than what I can’t, and always project positivity.  That means I usually don’t write about a negative experience until I’ve been able to turn things around somehow – I don’t talk about a bad flare until I’ve come out of it stronger.  But I’ve been waiting to feel “better” for far too long, and if I wait much longer, Sarcoidosis Awareness Month will be over.

I should note that in my head, I know I’m not really a slacker, and these are my own issues: unrealistic expectations I set for myself and unreasonable pressure I put on myself.  Still, I often say (for many different situations) that there can be a big disconnect between what we know and what we feel.  And going from being an overachieving workaholic to developing a disabling chronic illness can make being sick feel like being a slacker.  That’s just another thing to be aware of with sarcoidosis.

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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.