I’m here now. The next chapter of my #Sarcoidosis journey has started. I’m now on meds to get my Sarcoidosis under control. It’s has been an emotionally tumultuous journey for me because I went 7 years without meds. Change of diet here, a bit of exercise there.
… but it came back. It came back and I became wildly petrified. The onset of my Sarcoidosis made me face the dismal reality of my own mortality and how I was lacking in having a full understanding of what living with an autoimmune disease really means.
I’m a divorced, working, single #BlackAmerican mother with an amazing Future CEO to raise. I don’t have time to be chronically ill. I don’t have time to advocate for myself medically to the point it is taking up all of my free time. I don’t have any free time. I’m devoid of parents because they died when I was young. I have no siblings. I’m very Blessed to have a large supportive social community. Yet, I’m alone. It’s just me and my the love of my life, my child. I have to be here for the graduations, the weddings, the world travel, the ups and downs…. dammit I want to meet my damn grand-kids. I specifically want to help raise them, teach them how to play spades and take their lunch money. I have plans!
Yet, what does that matter when all you can obsess about is “how will this Prednisone destroy me”? “Is my doctor practicing subconscious medical apartheid?” “The American healthcare system doesn’t value Black American humanity, so who is authentically going to help me navigate this journey to fight Sarcoidosis?”
Last week, I finally decided on a fabulous rheumatologist. I also let go the notion that my whole life was going to go pear-shaped. In my podcast (Efab! Who you talking to?) I talk about letting go the fear about taking meds. I talk about letting go and getting out the way of my treatment success.
It helps my ex-husband boldly told me… if you don’t change your damn attitude you are going to die. And since I ain’t leaving him no money when I die, he must be telling me this earnestly – so I better heed the warning. LMAO.
I started my Prednisone on Sunday. Day 1 and Day 2 of this new chapter – and you know what? … I feel a smidge wonky and worried. My uterus didn’t fall out and I don’t have a craving to eat people like a person who has overdosed on bath salts or bad meth. I just feel out of sorts in a weird way. Like the steroid is doing something and I need to just make observations and let it work – it’s day 2 for goodness sake, lol!!! I noticed that it’s not good to crash on Prednisone. So I’m going to have to 86′ my intermittent fasting during office hours and eat some food. Yet, I’m shit scared that my fat ass is going to get FATTER on Prednisone. I’m already 190lbs – SOLID. So I don’t want to tip 195 because my blood pressure, glucose and all other shit that goes horribly wrong … goes horribly wrong when I’m this heavy. … but if this shhhhh works, then I better suck it up buttercup! Lower my food intake. Feel Blessed I found something to control this disease and perhaps find someone who likes tall, thick women with flat asses and long legs… bwwwwwaaaaaaaaaaaaaaaaaaaaah.
I’ve said it before I had a lot of reservations talking about my Sarcoidosis journey. I think my comical ass was in some very shitty, deep denial about the extent of my disease. Coming off the divorce, a shithole rebound and then still being in the midst of re-shaping my entire life – it was one more shitty thing I didn’t want to face about myself. … but that’s the thing isn’t it. This is life. It ebbs and it flows and you have to actually deal with the good and the bad. All the time.
So I’m not a happy bunny that my Sarcoidosis is back and that I’m on meds. I’m so f’ing not happy about it. Yet,I am humbled and I am very grateful. I’m grateful that I pulled my head out of my ass and I faced up to who I am with this disease and that this disease doesn’t define me, but it has made me grow up, advocate for myself, learn more, parent a smidge differently and embrace a future that is different from the one I’m constantly planning in my head.
It’s scary. Sometimes it’s embarrassing. I’m feeling all the feels. However, I’m prayerful and I’m happy to be alive. That’s the goal. Stay alive, help raise grand-kids, take their allowance money – spend it on useless gadgets on Amazon. The end.
If you have someone in your life or you have Sarcoidosis, I invite you to go on this journey with me. I will be using #SarcoidosisWarrior and #ThisHereSarcoidosis as my hashtags across the internet. I invite you to be entertained and I will also be sharing informational tips to help deal with the disease.
… let me ease my svelte ass to the break-room and heat up my lunch.
#Sarcodosis #SarcoidosisWarrior #ThisHereSarcoidosis #RareDisease #SarcoidosisAwareness #Respiratory #LungSarcoidosis #Lesions #SarcoidosisIsVisible #PowerToThePurple #sarcoid #autoimmune #BlackAmericanHealth #HealthCare #Awareness