
This is not what I wanted to write.
I was actually planning to write a blog this week (yes, I know, itâs been too long, Iâve wanted to a lot, but ⦠well, life gets in the way). But this week was actually five 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. This is my primary doctorâs way of putting it to me: âThe only thing we have right now is extreme social distancing [and masks, and hygiene], and for you, that means extra extreme.â
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. Thatâs kind of a tricky thing, though, because the main way many issues stay non-emergency is by maintaining routine monitoring and care. Additionally, itâs one thing when these issues get held off for a month or two (like we initially thought COVID-19 would last); when itâs looking more like a year or more, that is really too long to wait.
So, Iâve 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 (PT) evaluation for myopathy, any disease that affects the voluntary movement of muscles. I generally say Iâm a walking, talking, disaster mess, so I expected the evaluation to show that. Seriously, itâs not just like one bad area. Itâs my arms, and my legs, and my neck, and my back â weak muscles everywhere, so we really need to work on strength and endurance. But, thereâs also a six-minute walk test, and that threw me a little. Or, a little more than a little.
It wasnât just getting tired (and the PT kept reminding me we could stop any time I needed to), but my breathing truly seemed worse than Iâd 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 was really bad, not just my imagination.
Prior to this, Iâve said that though the sarcoidosis (an inflammatory disease causing abnormal masses of inflamed cells in an organ) is in my lungs â which helped lead to the diagnosis â thatâs actually the area where it affects me the least.  My biggest problems have always been musculoskeletal; more recently, itâs gotten on my nerves with small fiber/autonomic neuropathy (see what I did there?), which is a type of nerve damage that disrupts autonomic functions. But now, my breathing has truly become a problem.
On Friday, I had my (long overdue) annual physical. I had a list of things to tell my doctor about â things that are being addressed by other specialists, things that need to be addressed by other specialists, things that we donât need to do anything about now, but Iâm just keeping him informed of (which, of course, turned into something that needs to be addressed by another specialist). I left that appointment with two 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 six-month follow-up, I laughed a little (and cried a little) thinking about how many times Iâll have to reach out to him before that appointment comes.
Over the next month and a half, Iâve now got appointments scheduled for my rheumatologist (arthritis, fibromyalgia and sarcoidosis), endocrinologist (Hashimotoâs thyroiditis), neurologist (small fiber/autonomic neuropathy and headaches), mammogram, cardiologist (that breathing thing), weight management doctor (body by prednisone), gynecologist (issues), dermatologist (cutaneous sarcoidosis) and pulmonologist (pulmonary sarcoidosis). Not to mention, intravenous immunoglobin (IVIg) infusions four days every month (about nine hours each day), therapy weekly and now physical therapy twice a week. And of course, weâll have to add any additional testing or follow-ups these doctors want to do (there are a few things Iâm expecting, but also expecting the unexpected). As if that werenât enough, I got a message from my doctor yesterday afternoon: Based on the results of Fridayâs blood work, he wants me to repeat some of those labs, and also get a sonogram. Great. Something else.
Itâs ⦠a lot.
And itâs got me feeling a bit overwhelmed. Or maybe a bit more than a bit.
Now, this is the part where Iâd usually turn things around, where Iâd find the silver lining, talk about the good that has (or will) come out of all of this. But I donât want to do that today. Iâll be OK, Iâm not too worried, really. Most importantly, I know Iâm not alone in this experience, and Iâm not alone in feeling this way. I know some of you have been there, too. And thatâs why Iâm not going to jump right out of this feeling. Of course, Iâd rather be beaming out rainbows and butterflies; itâs my natural state as a happy hippie. But even I have my moments â no one can be that happy all the time. And thatâs OK.  I think thatâs really the part I needed to get to, the message I need to convey, both to myself and to you: Itâs OK not to be OK.
Weâve 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 we are able to unload, to share that burden with someone we trust, with someone who can say, âI hear you and Iâm here for you.â
Thatâs really what I believe we need more than anything â even more than answers, sometimes â that connection that lets us know we are not alone, even in this ⦠especially in this.
source https://www.programage.com/news/_1610859612868375.html
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