It’s Saturday August 28th. My “sick-anniversary” is September 20th and this is always a really weird time of the year for me. I avoid most the memories on my phone because the thought of my old life still makes me sick. I can still put myself right back into my life in 2018. And to… Continue reading Lupus, Diabetes, Spine..
Name: Jordyn Age: 28 Location: Buffalo, NY Diagnosis or suspected diagnosis: Systemic Lupus and Lupus Nephritis How long did it take you to get a diagnosis or how long have you been waiting for one: Luckily it was a quick diagnosis for me. I was 18 years old and woke up feeling like a 90 year old. Within… Continue reading Spoonie Spotlight on Jordyn
A Spoonie can refer to any individual who suffers from a chronic illness. Often times these illnesses are invisible and therefore extremely hard to understand. The spoon theory is an idea that chronically ill people have limited energy to perform everyday tasks, and the “spoon” is used as a representation of the unit of energy.… Continue reading What is a Spoonie? Intro to Spoonie Spotlight!
It’s absolutely crazy for me to think about the fact that my mom is sick too. You guys see 5% of all she does for me & I know you realize how much of a superhero she is. But my mom is an invisible warrior with autoimmune disease as well. She has 3 autoimmune diseases:… Continue reading Let’s Talk About My Mama!
I haven’t written in awhile. I got the diagnosis of Lupus March 4th and since then have been fighting with insurance to approve the immunosuppressant my rheumatologist wanted me on (Abatacept/Orencia). My doctor went through all the appeals he could and then it was turned back over to us to file a grievance through the… Continue reading Lil update- The good, the bad, and the in between!
We spent 5 weeks at the Mayo Clinic. We were blessed to be able to stay with family because we went over the course of the entire summer (2020). We started with rheumatology where they ran another whole blood panel for autoimmune diseases and other disorders. In the meantime of those results, she sent me… Continue reading Diagnosed Pt. 2
If you know me, you know I jinx myself 24/7. So, it would only be appropriate that right after I publish a blog called, “The Undiagnosed” I would GET DIAGNOSED shortly after. Yes... you read that right! I GOT DIAGNOSED! I want to say it a million times every time I’m talking about it. If… Continue reading Diagnosed Pt. 1
I tell people all the time that my life was probably the least affected by COVID compared to others in my world. I know people who have lost jobs, been forced to move, lost family members or friends, are frontline workers. But me? I’ve been homebound with my parents for the last 2.5 years due… Continue reading This Is Our Everyday: How Covid Has Changed Life For The Chronically Ill
I loved baths as a kid but as I got older, I grew out of them and then eventually grew to hate them. I tend to run on the warmer side and I didn‘t find sitting in hot water, dripping in sweat any fun. When I was first getting diagnosed with Interstitial Cystitis last year,… Continue reading Bath Time!!
My name is Samantha & I live in Orange County, California. I have been chronically ill for the past 4 years and my passion is to talk about my experiences and journey in order to help other people with theirs. I have 2 genetic mutations, 5 autoimmune diseases, and a plethora of other health problems… Continue reading My Story
It was a very busy and productive 2 weeks. I had my 6 month brain MRI check up, as well as a bladder and kidney ultrasound. Then I had an appointment with my Geneticist at Mayo to discuss my Whole Exome Sequencing results. Whole Exome Sequencing (WES) is one of the most extensive forms of… Continue reading January 2021 Wrap Up
... maybe a car accident?” The team of doctors are staring at my mom and I. I got a confused look and we both said no at the same time. Then they began to explain to us that my diaphragm was permanently paralyzed and I would need to be on the use of oxygen indefinitely.… Continue reading Have you ever been shot or stabbed before?