Hi all!!! I know it’s been a long time, unfortunately my actual website crashed, and I can’t retrieve anything from it! š¦ So, i’m starting over on here, while I rebuild a new one! So stay tuned my lovelies!
So, it’s been an eventful year!
Onto a quick medical update: Ā It’s been a year of doctors, and revelations! I was diagnosed with Ehlers Danlos in May. The doctors are now fairly certain I have amyloidosis. So, we’re going through all the testing for that. They’re also pushing for an MRI to fully rule out MS. My gastroparesis is causing issues, but i’m trying to push through. My gasro is good, but now i’m searching for a motility specialist. Any suggestions for Florida, would be greatly appreciated.
One thing that’s been really heavy on my heart is the taboo topic of Mental Health. The depression and anxiety many with chronic illnesses suffer from. The way doctors brush off symptoms, and just tell us it’s in our heads. It’s unacceptable. I’ve heard some people, doctors even, say, ” Just be more positive”.Ā Having a positive outlook isnāt going to cure an illness… Ā This is why people who struggle with chronic illnesses, and mental health issues say; āIām fineā. Because when weāre honest about how we feel and how we struggle, weāre told to think positive. Itās a bullshit statement. My thinking positively isnāt going to cure my autoimmune issues. So Iāll just continue on with saying; āIām fineā because people donāt want to hear nor see the truth. Iāll hide behind the fake smiles, and carry on. Perhaps itās because no one takes us seriously, no one lets us feel what we feel. Weāre told to suck it up and be positive. #endthestigma
No, I’m not saying that being positive doesnāt help, however it is NOT a cure. Itās extremely condescending to tell people āoh just be positive, itāll cure you.ā, or āmaybe be more positive and you wouldnāt be so sick.ā Those are condescending statements made to people, by people that donāt understand nor care to. They make people feel ashamed for how they feel, they basically say, how we feel is wrong. Thatās unacceptable.
Iāve had doctors, several in fact, comment on how positive I am. I donāt want others to feel down, or feel ashamed for how they feel and struggle, or brushed off because no one listens to how they feel. Iāve been there, I want to HELP them to share what they feel and how they struggle. We shouldnāt bottle up how we feel or struggle just so we donāt upset or offend anyone.
My motto is this: āAdjust, adapt, move forwardā. That is what I choose to do when I face an obstacle. We need to be a voice, we need to find our voice. We need to stand up and say we’re not wrong, that our feelings are perfectly normal. We’re not something to be ashamed of, or to made to feel inferior. I’m working on launching a youtube channel, with blogs about this, and about my journey. I’d love to have collaborators. I’d love get this movement off the ground! I’d love to make this huge! YOU are not defined by what you have, you are defined by WHAT YOU DO and WHO YOU ARE!
Let’s be voice, let’s fight the stigma we face. Let’s be beacon of hope to those struggling to find their voice!
#findyourvoice, #beavoice, #letsbeabeacon, #dontbeashamedofyourstory, #beinspired, #endthestigma
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