It bothers me that there is a disease called Sarcoidosis that people don’t talk about because I guess it’s not a bigger disease. Not looking for any sympathy, really. I’m just what a person would call pissed off. Rightfully so. It sneaks up on you when you don’t have time, when you have stuff to do… like a business to run, a family to take care of..you know life. It has no respect. It doesn’t give you a warning when you are about to have a flare up. You just walk around life avoiding sick people because you know you have this autoimmune disease that loves to lower your ability to fight off illness blah blah blah.
Oh but today. I’M PISSED OFF.
I’m pissed off that I went through 12 grades of school to learn a bunch of stuff that I will never use, but they didn’t once talk about sarcoidosis. I’m pissed that no one told me that it was a disease that is common in African American Women… and that we walk around with it for years with all of these random symptoms that don’t even go to together….but they all go together! SCREAMS!!!! Nobody, not one person mentioned it to me my whole life. Then, the one time I hear about it….it’s because I know Bernie Mac, and I mean everybody knows Bernie Mac and he DIED FROM HIS SARCOIDOSIS!! Like what in the name of vegan Mac n Cheez are y’all doing out here! Why aren’t we being taught things that matter.
I should have been taught soo many things in school. Ya’ll showing me how to write Polynomials… but nobody is teaching me how to Heal my body from … Cancer, Diabetes, High Blood Pressure, Love, Anxiety, Depression, SARCOIDOSIS!!!!! Sheeeshhh what about Finanes, credit YOOOOO!!!! WHY ARE WE SOOOO HUSH HUSH ABOUT THE REAL ISH!!!!!
Sorry about the caps. I told ya’ll I’m pissed.
I Digress.
What is Sarcoidosis?
Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue.This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure.
No one tells you about this, because it’s considered a rare disease. There are less than 200,000 cases per year. Honestly, if you tell the saints about it they would want to know and be on the look out for it. Early symptoms…. skin rashes, vision issues, arthritis, swollen lymphnods, You are always sick, because your immune system is always on vacation, and you have a cough like you smoke 10,000 packs of cigarettes day, when you don’t….. smh. Soo many mismatch systems and until you are tested…tested… (you know something is serious in the black culture when its said twice), and if you are an African American Woman (go figure, I looked in the mirror and I am a Black Woman… whoa).
Things that can cause a flare up: (are you ready for it?)
Dairy (no way.. but folks put dairy in the food chain, and you know the saints love cheese so it’s killing people! bastards), Stress, Lack of Sleep, Smoking, Anxiety, Not being Active, Not taking care of your mental health.
Things that can keep you in better health and minimal flare ups:
A Healthy diet, Staying Active, Managing your Mental Health and Stress level (this is a whole word) (meaning a sermon for those who didn’t pick up what I was putting down)
So as I sit here puffing on my peace pipe (my nebulizer, for the saints that don’t know me… I don’t drink or smoke lol) at 5 a.m. because I was woke up gasping for air, begging God to let me keep breathing, I was pissed off. In my mind I’m super human. Then my Father, God, reminds me, that it’s still his show, and he wants me to sit down. I sit. In sitting, I’m forced to write out my anger in this blog. I can’t keep sarcoidosis in the closet. People need to know about it. It’s the only reason this whole Cooking with Que, and The Kitchen by Cooking with Que even exist. So today my goal is to just breathe. Some days it’s the only thing I can focus on.
Just know… that I Love you to life and everything I learn, you will too.
Que
I live with mixed connective tissue disease (MCTD) which is an autoimmune disease that affects my organs, joints, and muscle tissues. I can relate to the ugly, sneak-dissin’ flare-ups and that is the most frustrating thing, besides feeling tired all the time. I can relate to the pissed-off feeling because no one tells us how to care for ourselves, not even the doctors who pledge to do no harm, yet the very first thing they do is suggest we pump ourselves with poisonous drugs. What’s wrong with people?? I am happy that you share your truth and life’s struggles with us all. I am happy that Cooking with Que and The Kitchen is a thing. Thank you. ❤
Such a beautiful and informative blog. Thank you sis! I had no idea this thing even existed ???? Love you to life too!
Thanks for your transparency. Far too often we walk around like Superwoman carrying our individual challenges in the closet. Please continue to take care of yourself and thanks for teaching us how to care for ourselves as well.
Breathe, Sister, Breathe. Continued blessings and healing to you!
Thanks for educating the public and staying healthy!
I too was uninformed & lost partial sight then was diagnosed with sarcoidosis of the optic nerve. They put me on high doses of steroids & an organ rejection medication that made me feel terrible… I went to a plant based lifestyle & began researching how to reduce inflammation holistically and included the foods to assist in that along with trying out yoga & meditation (meditation was & is my challenge) & when doctors said I would never regain sight in the areas that the disease caused loss in I was able to see again… Que your mantra & ways to approach health & wellness is real & works! I’m living proof. Thank you for educating more on the power of food!
Hi,… hopefully this makes you feel better, I am a white caucasian men with Sarcoidosis ;-). I got it diagnosed 17 years ago (back in Europe) and after a treatment with corticoids got it under control. Just trying to make you feel better,… keep fighting for Detroit.