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 Walk and a PURPLE challenge!
Purple
has always been one of my favorite colors, so I figured it would be fun to add
some purple flair for the month. Rather
than just one day of purple, I vowed to show off my purple every day during the month of April. I took pictures, posted on social media, and
tagged and hashtagged away. It was
definitely fun to come up with creative ways to have a different purple item
showcased each day.
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| View my Sarcoidosis Awareness Month album here |
What
I realized along the way, though, was how well this seemingly simple photo
opportunity really did its job of raising awareness about Sarcoidosis and what
it’s like to live with the disease. By
simply showing my day-to-day activities and experiences, I was able to give a
glimpse into what we often refer to as #ChronicLife. During this 30-day period, my purple pictures
included:
- 9 days when I mentioned feeling pain/fatigue
- 6 days when I referred to Physical Therapy and/or PT exercises that I do at home
- 2 days I mentioned other medical appointments/procedures/treatments
- 3 days showing physical symptoms
- 3 days I had talked about changing/cancelling plans because of illness/exhaustion
The reality is that it’s actually worse than that.
I didn’t make a point of posting every time I wasn’t well or had an appointment. These were the days it just happened to come
up when I was going to take a picture.
Quite often, outside of the chronic illness community or for something
like this, people with Sarcoidosis and similar diseases tend to play down our symptoms. We want to be accepted, we don’t want anyone
to think we’re looking for attention, and we want to seem (and feel) “normal”. So while these numbers may seem like a lot
(and, to be honest, they are), the truth is we don’t usually tell you what it’s
really like:
- The pain is there every day – it may vary in intensity and/or location, but there is always pain. For me, it’s usually worst in my head, neck, and ankles, and sometimes my hands and feet. For the past few months, though, I’ve been dealing with an agonizing hip issue that makes it difficult to walk, and sometimes shoots all the way down my leg, literally stopping me in my tracks.
- The fatigue is beyond any exhaustion that I ever felt as a healthy person. The best way I can describe it is how you would feel if you just ran a marathon and then tried to do a Spartan race. The difference is I can get that feeling just from walking from my bed to the couch. Or from getting out of bed. Or rolling over in bed. Or breathing.
- Speaking of breathing … since the Sarcoidosis is in my lungs, I get winded very easily, and often hear wheezing after taking just a few steps. When it’s cold out or after any exertion, inhaling feels like the air is burning me from the inside. The lungs are one of the most common places affected by Sarcoidosis, and often it’s much worse than that. Many of the people I’ve met (either through online Sarcoidosis groups or at the Sarcoidosis Awareness Walk) have been hospitalized and/or use oxygen on a regular basis because of how severely their lungs are affected by the disease. With that in mind, I’m grateful for a bit of wheezing … but I also know that mine can progress to that level at any given time.
- I actually had 13 medical appointments this month. That included 7 sessions of physical therapy, 4 “regular” doctor visits, 1 extra appointment because I was suffering too much to wait for my next scheduled visit, 3 lab tests, and one scheduled procedure.
- That scheduled procedure was a fluoroscopy-guided injection deep into the hip joint, which did provide some relief, but nowhere near as much as I had hoped. I also had 2 injections given by my rheumatologist into the outer side of that hip, which did not provide as much relief as they did the last time she did them (about 2 months ago). And just because it’s so much fun (!), I also have 3 injections per week at home that hubby gives me because I can’t see/reach/grasp the areas that need to be injected.
- Though you can sometimes see when my joints are swollen or my skin is affected (depending on the location), for the most part Sarcoidosis is what’s known as an invisible illness. That means that while my body is continually being attacked from the inside, I look “fine” on the outside. Because of that, I spent years going – untreated – from doctor to doctor who said that there was nothing wrong with me or I was “just depressed” because they didn’t see my pain. Because of that, I’ve had difficulties at a number of jobs because employers and coworkers thought I was at best exaggerating, at worst just making things up to get out of work. Because of that, people who once were friends faded away because they thought I was just making excuses when I had to cancel plans because I wasn’t well enough to keep them.
For as much as I can say here, it’s still
not enough for anyone to really “get”
what it’s like to have Sarcoidosis. For
one thing, it’s often referred to as a snowflake
disease, because it affects every person differently. Some are affected more in the lungs or heart;
others in the joints or skin. Some have
a mild case that doesn’t even require treatment; others must endure frequent
hospitalizations for the rest of their lives.
Even within one sarcoidosis patient, “what it’s like” can vary from day
to day, even hour to hour. Sometimes
that change is based on treatment or overexertion; sometimes for no apparent
reason at all.
Still,
the purple month has done a lot to make Sarcoidosis better known in my world,
and in the world around others who have participated. Just wearing purple (especially when color coordinated
with others) has inspired comments or questions, which led to conversations
about the disease. In addition to
bringing awareness to the Facebook and Twitter universe, this month’s purple brought
awareness to:
- My rehabilitation (Physical Therapy) hospital, as I talked with both my Physical Therapist and other patients receiving treatment for their illnesses or injuries
- The hair salon where I got my purple hair extensions
- The nail salon where I got my purple mani/pedi
- My synagogue, when my family joined me in purple power
- My favorite jewelry store, when I went shopping for purple bracelets
While
it definitely felt good – and fulfilled the purpose of Sarcoidosis Awareness
Month – to talk to others about this disease that affects just a percentage of a percentage of people around the world, there was something else that felt even better – something that
showed that I’d done my job in raising awareness, but more than that, it showed
how much people really care. Aside from
all the purple power that I posted, during this month twelve different people either tagged me in a post or sent me a
text with something purple, to let me know they were thinking of me. Having a
rare, invisible, chronic illness can be extremely isolating and
depressing. Finding others with the same
illness surely helps to let you know that you are not alone … and really
feeling that friends and family care?
Well that’s just priceless.
Thank
you to everyone who thought of me.
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