Monday, October 19, 2020

Overwhelmed

Photo of my hand, writing on a spiral bound journal; next to it, a coffee cup with a peace sign on it.
This is not what I wanted to write.

I was actually planning to write a blog this week (yes, I know, it’s been over a year – I’ve wanted to, a lot, but … well … life gets in the way).  But this week was actually 5 years since I was first (finally) diagnosed with sarcoidosis, and I wanted to write about what that diagnosis has done for me, and how much my life has changed since then.

But alas, life gets in the way.
More accurately, #SarcLife gets in the way.

While people around the world have been hunkering down at varying levels due to the pandemic, those of us with chronic illnesses like sarcoidosis, arthritis, and thousands more have had to take more drastic measures due to our compromised immunity and higher risk for not only contracting COVID-19, but more severe outcomes if we do.  My primary doctor’s way of putting it to me: “the only thing we have right now is extreme social distancing [and masks, and hygiene], and for you, that means extra extreme.”  For many of us, in addition to avoiding social situations and switching to shopping online whenever possible, that also meant postponing non-emergency medical appointments.  That’s kind of a tricky thing, though, because the main way many issues stay non-emergency is that we maintain routine monitoring & care.  Additionally, it’s one thing when these issues get held off for a month or two (like we initially thought corona would last); when it’s looking more like a year or more, that is really too long to wait.

So I’ve started to schedule some of these other medical appointments, and over the last few days, it all just caught up to me.

On Thursday, I had a Physical Therapy evaluation for myopathy.  I generally say that I’m a walking, talking, disaster mess, so I expected the evaluation to show that.  Seriously, it’s not just like one bad area – it’s my arms, and my legs, and my neck, and my back – weak muscles everywhere, so we really need to work on strength & endurance.  But there’s also a 6-minute walk test, and that threw me a little.  Or a little more than a little.  It wasn’t just getting tired (and the PT kept reminding me we could stop any time I needed to), but my breathing that really seemed worse than I’d realized.  I know I get short of breath easily, and that it takes a while to catch my breath again … but this just felt even worse than usual.  And seeing the PT so concerned kinda reinforced the idea that this is really bad, not just my imagination.  Prior to this, I’ve said that though the sarcoidosis is in my lungs – which helped lead to the diagnosis – that’s actually the area where it affects me the least.  My biggest problems have always been musculoskeletal; more recently, it’s gotten on my nerves with small fiber/autonomic neuropathy (see what I did there 😉).  But now my breathing has really become a problem.

On Friday, I had my (long overdue) annual physical.  I had a list of things to tell my doctor about – things that are being addressed by other specialists, things that need to be addressed by other specialists, things that we don’t need to do anything about now, but I’m just keeping him informed (which, of course, turned into something that needs to be addressed by another specialist).  I left that appointment with 2 referrals and a lab order (plus a reminder to schedule a follow-up with another of my current specialists).  And as we made the appointment for my 6-month follow-up, I laughed a little (and cried a little) thinking about how many times I’ll have to reach out to him before that appointment comes.

Over the next month and a half, I’ve now got appointments scheduled for my rheumatologist (arthritis, fibromyalgia, & sarcoidosis), endocrinologist (Hashimoto’s thyroiditis), neurologist (small fiber/autonomic neuropathy & headaches), mammogram, cardiologist (that breathing thing), weight management doctor (body by prednisone), gynecologist (issues), dermatologist (cutaneous sarcoidosis), and pulmonologist (pulmonary sarcoidosis) … not to mention IVIG infusions 4 days every month (~9 hours each day), therapy weekly, and now physical therapy twice a week. And of course, we’ll have to add any additional testing or follow-ups that these doctors want to do (there are a few things I’m expecting, but also expecting the unexpected).  As if that weren’t enough, I got a message from my doctor yesterday afternoon: based on the results of Friday’s blood work, he wants me to repeat some of those labs, and also get a sonogram.  Great.  Something else.

It’s … a lot.

And it’s got me feeling a bit overwhelmed.  Or maybe a bit more than a bit.

Now this is the part where I’d usually turn things around, where I’d find the silver lining, talk about the good that has (or will) come out of all of this.  But I don’t want to do that today.  I’ll be ok, I’m not too worried, really.  Most importantly, I know I’m not alone in this experience, and I’m not alone in feeling this way.  I know some of you have been there too.

And that’s why I’m not going to jump right out of this feeling.  Of course I’d rather be beaming out rainbows and buttahflies; it’s my natural state as a happy hippie.  But even I have my moments – no one can be that happy all the time.  And that’s ok.  I think that’s really the part I needed to get to, the message that I need to convey, both to myself and to you: it’s ok not to be ok.

B&W photo shows a woman with dark hair wearing a dark shirt; white text overlay reads: Staying positive doesn't necessarily mean being happy all the time.  It just means that even when you're feeling low, you know that it will end, and that there are better days  on the other side. I TheMindsJournal

We’ve got to break free from the stigma that surrounds mental health issues, from the negativity about negativity, if you will.  Everyone goes through periods of being more down than up, and those of us living with life altering, sometimes disabling chronic illnesses surely have understandable reason to feel overwhelmed, anxious, depressed, and more (not to mention anyone with a diagnosed mental illness who may struggle to manage these feelings as well).   Where this becomes even more problematic is when we think we have to keep these feelings to ourselves, to put on a fake smile for the world while crying or screaming on the inside.  It is so important to share these feelings; whether with a friend or family member, a live or virtual support group, a professional therapist, or even a blog post 😉, what matters is that we are able to unload, to share that burden with someone we trust, with someone who can say “I hear you” and “I’m here for you.”  That’s really what we need more than anything – even more than answers, sometimes – that connection that lets us know we are not alone, even in this … especially in this.

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Wednesday, October 2, 2019

Patients Need Protections in Mid-Year Formulary Bill (A2849)

For most of my life, I was an overachiever: I excelled in school, worked multiple jobs, and volunteered to help others as often as possible.  But in my early 30s, I was forced to slow down.  I began to experience a mysterious combination of symptoms that no one could explain: pain from head to toe, debilitating fatigue, weakness, dizziness, nausea, and later, severe joint swelling and a variety of skin reactions.  It took 8 years for doctors to figure out what was going on, with countless tests, misdiagnoses, and treatments that did not work along the way. Eventually I was diagnosed with a rare inflammatory disease called sarcoidosis.

At its worst, this condition left me completely incapacitated: the arthritis in my hands, elbows, back, hips, knees, ankles, and feet was so severe that I could hardly move. I needed support to stand, shower, and dress; at times I couldn’t even hold a phone in my hand to ask for help. When we finally found the right treatment, my world changed. Literally overnight, there was a noticeable difference, and I continued to improve for weeks and months. There is no cure for sarcoidosis, but thanks to my miracle drug I’m able to participate in, and contribute to, my life and my community.
My miracle drug

Wednesday, July 24, 2019

An Honor to Be Nominated

Nominations:
Patient Leader Hero
and Best in Show: Blog
For the third year in a row, I have been nominated for a WEGO Health Award (two, actually!).
The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders and patient-centric initiatives they admire. (wegohealth.com)
Though it sounds cliché, it is an honor to be nominated for these awards.

I say this not to brag, not even to ask for your endorsement.  I am truly grateful for the nominations, and so glad to know that my friends and fellow warriors see me this way.  That is what I’m always striving towards – not the recognition for myself, but to make that kind of impact on others who need it.  Seriously, my heart is overflowing with this idea.

But if I’m being totally honest (and what else is a blog for, if not total honesty?), what I feel most of all is … unworthy.  Perhaps in previous years I could understand the nominations, could even almost believe that I deserved them (not to win, mind you, but at least to be nominated).  But looking back on the past year, it’s just been a mess, and I don’t feel like I’ve lived up to it. 

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.

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.