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!
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