Thursday, May 19, 2016

Are You Aware?

You may be wondering how it is that during Sarcoidosis Awareness Month I posted something (sometimes more than one something) every day about my illness … and yet now that we’re more than halfway through Arthritis Awareness Month (and Fibromyalgia Awareness Month) – the conditions I’ve been living with long before I’d ever even heard of Sarcoidosis, let alone been diagnosed with it – the only thing I’ve written here was a reflection on last month.  Well that’s because I’ve been so busy DOING (and thinking, and planning), that I haven’t had time (or energy) to write about it!

So let’s start with the month overall – Arthritis Awareness Month.  Why do we need it?  After all, it’s not like Sarcoidosis – everyone’s heard of arthritis, right?  Everyone’s aware, right?

Well, yes and no. 

Yes, pretty much everyone has heard of arthritis … but there is so much more to it than what most people realize.  When most people hear the word arthritis, what comes to mind is usually osteoarthritis – a degenerative joint disease that comes from wear-and-tear, typically common with age, overuse, or injury.  But arthritis is actually an umbrella term that covers over 100 different conditions.  In fact, it can even refer to just one symptom of a more complex disease that can affect the entire body (after all, the word arthritis really just means joint inflammation).

That’s how it is in my case.  I’ve actually got a few different types of arthritis: tendonitis and bursitis are the easy ones – they’re just inflammation of the tendons and bursae (fluid filled sacs that cushion the bones, tendons, and muscles of the hip joint).  They cause excruciating pain in my hip and down my leg, and make it difficult to walk.  We’ve tried all sorts of things to relieve this pain (physical therapy, injections, etc.), but so far nothing’s really working.  So I’ve been walking with a cane for support, but that’s only been adding to the problems in my neck, shoulder, and arm as I put all that pressure there instead … so now my physical therapist says I should use a walker or rollator (walker on wheels) instead.  Yay.

Then there are the more complicated arthritis diseases that I’m living with.

Sarcoidosis is my latest diagnosis (see more about that saga here).  From the Foundation from Sarcoidosis Research:

Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease that can affect almost any organ in the body. It causes heightened immunity, which means that a person’s immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body’s own tissues. The classic feature of sarcoidosis is the formation of granulomas, microscopic clumps of inflammatory cells that group together (and look like granules, hence the name). When too many of these clumps form in an organ they can interfere with how that organ functions.
I was officially diagnosed in October 2015, when something in my blood suggested sarcoidosis, so my rheumatologist sent me for more tests.  Radiology (chest x-ray) identified these granulomas in my lungs, and pathology (biopsy) confirmed granulomas in my skin.  I’ve also got “systemic” (whole body) symptoms from it, such as fevers, chills, fatigue, and more.  But where it affects me the most is my joints.  In Sarcoidosis, arthritis is one symptom – and one debilitating symptom at that.  Before I started treatment for this disease, every one of my joints hurt.  Yes, that sounds like an exaggeration, but it’s true: I had this inflammation in my neck, shoulders, elbows, wrists, hands, back, hips, knees, ankles, and feet.  Many of the joints were so swollen I couldn’t move them at all.  I couldn’t wear my wedding & engagement rings.  I couldn’t fit any shoes on my feet.  I couldn’t stand up without help.  And I couldn’t open the pill bottles to take the medication that was supposed to be helping me!  With treatment (which includes injections and oral medication that leave me with a compromised immune system, a number of other side effects, and increased risk of other serious complications), most of the swelling has gone down, some of the pain has decreased, and I am able to move around more easily.  But none of this is gone completely.  I still have pain everywhere and my joints still swell sometimes.  What I live with on a daily basis would likely stop a healthy person in his/her tracks … but when you live with it every day, you just have to find a way to keep going.  No matter how much it hurts.

And then there’s the even bigger mystery, Fibromyalgia.  From the National Fibromyalgia & Chronic Pain Association:
Fibromyalgia (fy-bro-my-AL-ja) is a common and complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body wide or migrate over the body.  Along with other symptoms, pain and tenderness wax and wane over time.  Fibromyalgia (FM) affects people physically, mentally and socially. The literal translation of the word fibromyalgia is pain in the muscles, ligaments and tendons. But FM is much more than pain and presents with many other symptoms that vary from person to person.
It was a much longer and more complicated journey to get the Fibromyalgia diagnosis.  The biggest problem is that pain, fatigue, sleep disturbances, and brain fog are all invisible symptoms, and doctors (as well as friends, family, coworkers, and bosses) often don’t believe what they don’t see.  This is further complicated by the growing number of doctors who are too busy to spend quality time listening to patients, and are quick to dismiss us as depressed or drug-seeking, rather than address our legitimate physical problems.  After this, we must start all over with a new doctor, feeling more beaten down and defeated after each one.  It took 4 years and more than half a dozen doctors from the time I KNEW I had Fibromyalgia until I officially got the diagnosis.  It was only after I’d developed visible symptoms of another condition (which was eventually diagnosed as Sarcoidosis after years of misdiagnoses as Psoriatic Arthritis, Rheumatoid Arthritis, Systemic Lupus Erythematosus, Still’s Disease, and Undifferentiated Connective Tissue Disease) that doctors even acknowledged that anything was truly wrong with me.  Even then, they addressed what they could see (joint swelling and rashes), but when I brought up all the other symptoms that suggested Fibromyalgia, they simply said “well Fibromyalgia doesn’t look like that.”  What they failed to realize was that Fibromyalgia is a common comorbidity with all the other diseases they suggested that do “look like this.” Eventually, my current rheumatologist acknowledged that the other diagnoses she was considering do not include all of my symptoms (like I’d been saying for years – long before I started seeing her), and she finally diagnosed and began treating me for Fibromyalgia as well.

What’s important to note about both Sarcoidosis and Fibromyalgia is that there is no cure for either one.  With treatment, the best we can hope for is to manage the symptoms, slow the progression, and ideally go into remission (low disease activity).  But even then, it can always come back (flare) at any time, with no warning.  For me, we’re still working on managing the symptoms.  Even with the combination of dietary changes, physical therapy to help me be as active as possible, natural supplements, and medications that can sometimes provide as many problems as solutions, my symptoms are not “managed” enough for me to live or work like I used to.  I still suffer from debilitating pain and fatigue every day, and I have this to look forward to for the rest of my life.

Now if you know me at all, you know that I can’t just sit back and do nothing about that.  I may not be able to change the diagnosis or the prognosis, but I’m hoping I can at least change the perception.  Even when my body doesn’t work so well, I can still use my voice (and my computer) to raise awareness, advocate, and support others living with these diseases.

In fact, much of what I’ve been spending time on has been in preparation for an incredible event that begins TODAY and runs through the weekend: World Autoimmune Arthritis Day.  Hosted by the International Foundation for Autoimmune Arthritis, WAAD is a global online event that brings together patients, caregivers, bloggers, health professionals, and nonprofit organizations to raise awareness about the difference between the commonly known osteoarthritis and other types of arthritis, like those that are autoimmune or inflammatory in nature (like mine).  It’s designed as a “virtual race around the world” with “tracks” for Lifestyle Guidance, Support and Communication, Disease Management, and more.  We’ll have resources from dozens of organizations, live chats, and tips from the experts for living with these diseases.  Join us on the WAAD website, on Facebook, and on Twitter to learn more!
Also launching today, in line with WAAD’s Disease Education track, we’re starting our biggest campaign ever: a GUINNESS WORLD RECORDS® attempt for the most pledges in a health campaign.  We’re asking YOU (and everyone we know) to pledge to learn about the different types of arthritis, because all arthritis is NOT equal.  Click here to take the pledge!

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