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. 

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 arthritis.org/advocate/ambassador-program.

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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.

Not 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?

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Back in college, I dated the wrong boy for far too long.  He seemed to feed off of every insecurity I had, and even gave me some new ones.  While I’ve mostly overcome all that and rarely give him a second thought, there’s one thing he said that has stuck with me all this time.  One thing that has become my greatest fear, my greatest insecurity.

The 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, we scroll past it and don’t give it a second thought.  I made a comment – half joking/half sarcastic, and scrolled on, as we’re supposed to do.  But this time, it stuck with me.

All 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 different conditions.  Yes, that includes your grandmother’s bad hip – that’s osteoarthritis (OA), a degenerative joint disease caused by wear-and-tear.  But it also includes things like carpal tunnel syndrome, gout, and rheumatoid arthritis (RA).  And then there are my issues. 

Back in 2007, I started feeling like something was wrong, but I couldn’t quite pinpoint what it was.  My body ached everywhere – a deep, immobilizing pain as if I’d just done an intense workout.  I felt an indescribable fatigue that no amount of sleep (or coffee) could defeat.  I had headaches and stomach aches daily, and often felt dizzy, nauseous, and weak.  In 2008 I was sent to countless specialists for countless tests, but the doctors had no answers for me.  They suggested I was “just depressed” or worse yet, making it up.  After two separate nurses (parents of clients, not actually treating me) suggested that it sounded like fibromyalgia, I began to do my own research.  The more I learned, the more I knew that those two nurses were right.  Still, the doctors continued to dismiss me, to disregard my suffering and deny my pleas for help.  It took another four years before I was officially diagnosed with fibromyalgia.  Treatment does reduce the symptoms a bit, but what meant more than anything was the validation that what I was feeling was real.  That’s why Fibromyalgia Awareness Day (May 12) is so important – it lets other people suffering with this condition know that they are not alone.

As bad as it is, I wish I could say that fibromyalgia was my only ailment.  Sadly, it rarely acts alone; fibromyalgia patients often have a number of overlapping conditions. In 2011 I developed new symptoms: unbearable pain and swelling in my feet and ankles, and rashes on my legs.  Though these didn’t fit with what I was sure was (still undiagnosed) fibromyalgia, they were visible, which meant the doctors could no longer say it was all in my head.  I was told it was “some kind of arthritis,” that it was autoimmune/inflammatory, but the doctor didn’t know exactly what type.  Over time, it progressed, so that my hands often swelled and nearly all joints became painful.  It took another four years of rotating misdiagnoses and failed treatments before we finally figured out that the inflammatory arthritis and other symptoms were part of a rare disease called sarcoidosis.  Like with fibromyalgia, the confirmation of a definitive answer after years of only questions was a huge relief.  Also like with fibromyalgia, the treatment helps to alleviate the symptoms somewhat, but I still have pain and fatigue every day, and a bad flare can knock me out of commission for days or weeks at a time.

Lucky?

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 especially) since illness has become such a big part of my life, I find reasons to keep my smile, things to be grateful for daily.  I feel like I'm supposed to say I’m lucky, it’s not that bad for me … not compared to the others.

When I was finally diagnosed (after 8 years of trying to figure out what was wrong), I googled Sarcoidosis and the first thing that came up was the Bernie Mac Foundation: started by his wife after he DIED from this disease.  I haven’t died, so I’m lucky, - it’s not that bad.

In the online groups I frequent, I see post after post about people hospitalized due to their illness.  I haven’t been hospitalized, so I’m lucky – it’s not that bad.

At events I’ve attended, I’ve met people who must travel with portable oxygen tanks.  I haven’t required oxygen, so I’m lucky – it’s not that bad.

A friend of mine was misdiagnosed with lung cancer and treated with toxic chemotherapy for years before being correctly diagnosed with sarcoidosis.  I haven’t been misd- … well, I haven’t been misdiagnosed with cancer (RA, Lupus, Psoriatic Arthritis, Still’s Disease, and Undifferentiated Connective Tissue Disease, but not cancer), and I’ve only had low-dose chemotherapy treatment, so I’m lucky – it’s not that bad.

I feel like I’m expected to say that I’m lucky because it’s not as bad as it could be, or as bad as it is for some others: I haven’t died or come close to dying from my illnesses.  But is that really the standard we should use for “luck”?  Yes, I’m grateful to be alive … but lucky?  

Awareness(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 American Cancer Society, she was hesitant to own it for herself, to join with others in the Survivor Lap.

Anyone who knows me (or follows this blog) knows that I am not shy when it comes to talking (or writing) about my illnesses.  You’ve seen my posts about Sarcoidosis Awareness Month, Arthritis Walks and advocacy activities, and my involvement with World Autoimmune/Autoinflammatory Arthritis Day.  It took a little while to get comfortable with that, to get over the embarrassment and the fear of what other people would think of me.  Ultimately, I had to just get over it.  These illnesses aren’t my fault – I didn’t do anything to bring them on myself – and if writing about them can help anyone else, then that’s more important anyway.

That said, I’ve still been mostly quiet about one illness/area.  Physically, the details are not what anyone wants to think about, so I don’t write about them.  Psychologically, I was scarred by my third grade teacher: if any student had to go to the bathroom during the school day, she said we had 3 minutes; any longer and we would be in trouble (she assumed we must’ve been playing, not actually using the facilities).  I was conditioned to have this negative association with an entire system; a natural biological process became synonymous with being bad.  Even though I now know how wrong she was, it’s been so deeply ingrained that nearly 35 years later I’m still not comfortable discussing it.

International Foundation for
Functional Gastrointestinal Disorders
http://aboutibs.org/

I recently discovered that in addition to Sarcoidosis Awareness Month, April is also IBS Awareness Month.  My initial instinct was to just let that pass without a word … but then I thought about why I write about the rest. 

The shame and secrecy make it so much worse.  Maybe if I’d heard people talk openly about this type of thing when I was younger, it wouldn’t have been as bad for me.  Maybe I could have spoken up when I was having problems, rather than waiting until I had to be brought to the emergency room at 8 years old.  Maybe I wouldn’t have developed such unhealthy habits that only make a “bad” situation worse.  Maybe I wouldn’t have felt so isolated, living with a problem that I couldn’t talk about, and even doctors couldn’t easily explain or resolve.

Instead, I grew up with severe abdominal pains that would literally stop me in my tracks.  I grew up never knowing what “regular” was, but usually needing a lot more than three minutes.  Decades later I’m still dealing with these problems, and despite countless attempts, my doctors have never found a good solution for me. 

The crippling pain that sent me to the emergency room back in third grade was treated as an isolated incident, but I continued to suffer.  We tried to address it again when I was in high school.  After the most uncomfortable and embarrassing testing imaginable, my doctor diagnosed me with a “spastic colon” – my intestines were literally having spasms, causing the severe cramping and motility problems. 

Between that and my headaches, his explanation was simple: “stress really does a number on your body.”  While I understand and believe in a mind-body connection, this translated in my 15-year-old brain to saying I could have avoided this if I weren’t so uptight (and how exactly was I supposed to relax anyway, when I was in that level of pain and he was just shoving medical equipment the wrong way up a one way street😱?) . 

We tried a number of different medications, but none really helped.  When that doctor was no longer practicing, I saw someone new, who couldn't find anything wrong with me … and when he couldn’t help, I saw someone else.  This was a basic cycle that I repeated every few years: I saw a doctor, he made me feel bad about not looking as awful as I felt, and eventually either I gave up on him and figured I’d just have to live with the pain or he gave up on me and referred me to a gynecologist instead (now, in fairness, I did have problems in that area also, but the two weren’t mutually exclusive) … then the pain got worse, and I tried another doctor … who didn’t help, and eventually I gave up on him, too. 

At some point, what used to be called spastic colon became more commonly known as irritable bowel syndrome, or IBS.  I was officially diagnosed with IBS nearly 15 years ago, but the cycle continued just as before.  I’ve tried dietary changes, supplements, medications (both prescription and OTC), and alternative therapies, but none have made a substantial difference yet (I still say yet, because I’m not giving up).  IBS is something I’ve always had to suffer in silence.

When I think about someone else suffering in silence, though, I have a problem.  That’s when I really want to speak up.  I don’t want anyone else to feel that she is alone in this.  I don’t want anyone else to be too embarrassed to get help, because this is just not the kind of thing we talk about.  So, as uncomfortable as I am writing this (and as much anxiety as the idea of posting it publicly is giving me), that’s what IBS Awareness Month is about.

So if you are suffering from IBS, or think you may be, here’s what I can offer based on a lifetime of living with it:

• You are not alone.  IBS affects 1 in 5 people in the US.  Statistically, that means 4 other kids from my third grade class could have been dealing with this, too.  If we could have talked about it back then, we probably would’ve figured out for ourselves how wrong our teacher was to put that kind of pressure on us.  We would have known that it wasn’t just us, it wasn’t our fault, and it wasn’t our dirty little secret to keep for the rest of our lives.
• There is no normal.  Even without any underlying problem, people digest at their own pace … so don’t try to compare yourself to what you think is the “right” frequency.  There is no “right” frequency.
• Trust your gut.  Well, your metaphorical gut, anyway.  If something doesn’t feel right, get it checked out.  If your “pace” or pain level changes and you’re feeling concerned, get it checked out.  As uncomfortable as it may be, it is always better to know what’s going on.  If something is developing, you can address it before it gets worse.  If it’s not, you can save yourself the stress of imagining the worst (which could, in fact, make things worse).
• It’s ok to talk about it. If you’re not comfortable discussing IBS with people in your life, look to the IBS community.  Find a support group, in person or online.  There you will find people who understand what you’re going through, who won’t judge you or look at you any differently.  The reality is that most people who care about you probably wouldn’t either, but I understand what it’s like to have that fear. 
• Never give up hope.  It’s true, there is no cure for IBS, and no one size fits all treatment answer, either.  But there are options.  Even though I’m not a “success story” myself, there are many who have found relief through diet, medication, and alternative therapies … and while I won’t hold my breath for it, I still hold on to hope that my time will come.  And yours will, too.

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April 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 understanding – they know these are serious, and want to be there for you.  When it’s sarcoidosis, however, that last part is often lacking.

With sarcoidosis (and many other rare/less well-known diseases), there’s not a fast and direct line from symptom to diagnosis.  It can take years of doctors, tests, and misdiagnoses before the right one is discovered, and even longer before a helpful treatment plan is worked out.  During that time, the symptoms get worse, but the understanding and sympathy from those around us often fades.

To an extent, some of that is almost understandable.  We seem to drag on, often looking well though we say we feel awful, unable to answer the most basic questions, like “what’s wrong with you?”  Our symptoms change from day to day, and often mimic or overlap with other conditions.  We call out sick from work, cancel social plans, avoid chores … and no one really knows why.

That’s why Sarcoidosis Awareness Month (SAM) is so important.  It gives us the opportunity to answer some of those questions, to help those around us to understand what we’re going through, and to help others living with sarcoidosis to know that they’re not alone.  It gives us a chance to say the word, put a face to it, and to build a community of patients and supporters who are in this together.

The first question to answer, of course, is What is sarcoidosis?  I’ll let the Foundation for Sarcoidosis Research answer that: