progressive illness

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How Do You Cope Living With A Progressive Illness?

I choose to be proactive wherever and whenever I can in my health journey. Often I’m so battle weary from the fight, it’s not an easy choice. Curling up in a ball and retreating does cross my mind.

My latest article published on The Mighty looks at this subject.

If you have a progressive disease, how do you cope? I'd love to hear your thoughts on the subject 💜 ##ChronicIllness #RareDisease #CopingTips #ProgressiveIllness

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Chiari Malformation x Syringomyelia x Panic Disorder = 🧠🤯🙃

Seeing my friends statuses about going away make me genuinely happy for them, but it reminds me of how much my life has changed. I used to be able to do those things without any worries and now, I have to worry about things like what if that rare emergency surgery my neurologist mentioned happens in another country. I have Chiari Malformation, Syringomyelia, A panic disorder. Before I found out I had these illnesses my life was a hot mess, I was drinking irresponsibly to cope with some traumatic incidents but I stopped when I found out about my illnesses. These moments in particular remind me why it’s so important to be in tune with our bodies and trust ourselves. My first family doctor didn’t take me serious when I said my dad heard and found me after I dropped to the ground ( little did I know I was experiencing syncope, a symptom from Chiari malformation) the doctor told me his only job was to make sure my head wasn’t bleeding inside so he sent me for a CT scan. He wouldn’t send me for a MRI so I went to a walk in clinic & over time they monitored my symptoms and believed in me, they too could see my suffering. My MRI’s stunned the neurologist because I visually didn’t look sick. I knew something was wrong and had I not persevered like I did, the answers I have today I wouldn’t know & processing the possibility of paralysis over time is easier than unexpected paralysis. Never be afraid to speak up when something doesn’t feel right, and if it means finding a second opinion if one doctor won’t help, like Nike says JUST DO IT. Now I have a new family doctor who is super helpful, I feel heard and when something doesn’t feel right with my body and I ask her for help she trusts my instincts. I’m awaiting a new non urgent health matter I find out September 6th I am handling it surprisingly well, all thanks to my nurse & my psychiatrist. Like Channing Tatum says, everyone should be in therapy! :P

#ArnoldChiariMalformation #ChiariMalformation #Syringomyelia #RareDisease #ChronicIllness #ProgressiveIllness #PanicDisorder #GettingHelp #Therapy #BeStrong #IfYouFeelHopeless #imhereforyou