Blog · Complex Regional Pain Syndrome · CRPS · Invisible Illness · legacy · Life · Pain · Personal · Platform · quote · Reflex Sympathetic Dystrophy · RSD · Spooners · Truth To Power

It’s Okay To Not Be Okay!

With everything going on in our world right now it’s so easy to feel the uncertainty all around us. We try to get through the day and hope for a better tomorrow, and we do it all again the next day, until we feel ourselves start breaking down and giving up. I’m here to let you know that whatever you’re feeling is okay. We all feel in different ways when it comes to stressful situation, especially situations like now. We try our best by staying home and doing what is asked from us by our local and federal government but we still feel anxious, lonely, scared, frustrated, and so much more.

Recently I came across an Instagram post from one of my favorite people Jaina Lee Ortiz, She wrote

“This is what I call REAL. I’m here to say it’s okay to not be okay. It’s okay to feel what you feel, it’s ok to take an unfiltered picture, it’s ok to feel uninspired and lost and sad and confused. But also remember, you’re not alone. Your struggles don’t define you. You are enough, you are worthy, you are beautiful, you are brave. Let’s not compete or compare. Screw the beauty standards. Post an unfiltered picture. Make a silly face. Emotionally clean your spirit with a good cry. Speak passionately about what you believe in. Be authentically you. And don’t be afraid to show it. 💜 -j”

This post really brought into light that it’s okay to not be okay. We’re aloud to cry and just let everything that we’ve been feeling out. Having a good cry is actually good for you.

I just hope that in the end we can take whatever life lessons that we’ve been given by enduring this pandemic we can use it to make our world a better place.

Just remember you are not alone, we are going to get through this, I love you and you are loved!


One thought on “It’s Okay To Not Be Okay!

  1. Good Afternoon, Margaret,
    I was diagnosed with RSD 13 years ago, at the age of 52, after a “simple” meniscus tear, that changed my life. In my case, I am in the 1% of those diagnosed with RSD, as mine followed my nerves from the initial injury site, to my head, compromising my entire sympathetic nervous system….. like being stung by a swarm of bees, while having them removed with a baseball bat. I am fortunate to have a brother on staff at Geisinger Medical Center, who put me in touch with a wonderful Rheumatologist. For my particular situation, my confirmed diagnosis was one of “omission,” meaning all other neurological possibilities had to be ruled out.
    After putting me on a medication regime of pain relief and regained mobility, I was referred to Dr. Robert J Schwartzman, at Drexel University in Philadelphia.
    Having confirmed my diagnosis, I was offered two possible treatments; a ketamine induced semi-coma, or in Germany, a fully induced coma, to try and
    “reboot” my brain, from telling all of my nerves to “fire,” as in the case of shingles.
    I opted out of both, as they were both extremely experimental, and continued on medication, and trying to regain a semblance of a “normal life.”
    Intellectual processing, due to my meds, can be a challenge at times, but audiobooks, patience, coping mechanisms and amazing friends and family who help finish my sentences, when needed, have gotten me this far.
    I have advanced to stage 3, RSD, by the added symptom of sporadic spasms when my body is at full rest, which are extremely annoying when trying to sleep!
    My endurance for any type of weight baring activity, is low….. my golf game has been relegated to trying to get past the windmill or dinosaur.. Swimming has been my saving grace,
    Weather, as anyone with physical trauma can tell you, is the worst culprit.
    There are days when pain compromises my movement, so I lie low……with Netflix!
    At age 65, I still enjoy gardening, slow walks, tennis matches(spectator) traveling; a short term dosage of prednisone, makes that possible…… and my wonderful family and friends.
    My advice to all those who have been recently diagnosed would be educate yourself about the DISEASE, not what your expected CAPABILITIES will be, as every body REACTS differently….. the accounts that you read on the internet are OTHER people’s story….. write your own.

    Thank you for shining a light on RSD……

    God Bless,
    Katherine J. Still


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s