MarilynsFightForLife

Yesterday, in a family text feed, my sister posted an article that pointed out the air quality in urban areas and how it possibly led to the large amount of medical problems that people of color face. apple.news/ApYhrSPFrS62hzcy2hzcy2EDQYIw
apple.news/AUN7INT9_Tum5WLmr4y58pw
So, I stated how it made sense, especially within the Sarcoidosis community as we fight to find the origin of the dis-ease since it was long stated that people of color were affected at a higher rate than other races. When I was young, there was a lot of tree spraying and that residue came down on us. My mother was diagnosed with this disease when I was young and she stayed in the hospital for a month while they tried to figure out what it was. I'm just trying to understand. #MarilynsFightForLife #fighting4acure #LivingWithChronicPain #sarcoidosisawarenessmonth
I was originally diagnosed with Pulmonary Sarcoidosis which resulted with me requiring 24 hour oxygen support to live. Now, I am considered one with Chronic Sarcoidosis since the disease is affecting several areas within my body. My niece, who is a general surgeon, posted a study about Sarcoidosis from 1991, that listed outdate information. I told her that appreciated her effort, but that she could find up to date information about the disease on the Foundation of Sarcoidosis website: stopsarcoidosis.org as well as in the upcoming documentary via: http://sarcoidawarenessfilms.info. She replied, "Here's a 2020 paper if that's more your speed. Same synopsis."
Truthfully, I don't know why it always come to this with my niece. I just added to the conversation about how I could agree with the information posted by "Her Mother" originally. I never intended to make it a "Me" conversation. She responded to me that nobody doubts my struggles or pain and that she feels for me, but why do I make every conversation pivot to my experience? Huh? What? I just don't get it. Within this family dynamic I just should stay quiet. Why? This is where I need your help to understand if I, indeed, did steer this conversation towards me? I am an advocate for Sarcoidosis yes, but in this conversation I just agreed with my sister and questioned if this would help with determining the origin of Sarcoidosis within me. Was I wrong to say anything?

I just wanted to share with you guys about the severe neuropathy flare that I’ve been experiencing for the last 2 1/2 months. So severe that I have seen three doctors just to get some answers and some relief for my whole body swelling to the point it seeped fluid.
My legs and feet were so hard that they didn’t even pit. My husband and I didn’t think it was fluid at first. It literally felt like I had fifty pound weights attached to each leg. I have to be assisted with everything including washing and eating. This pain is extreme. My hands were the worst. They literally have no feeling in them. Typing this is very painful but I had to share my experience. My hands felt like they have frostbite and they are on fire at the same time. Rubbing them didn’t help. The only relief was to submerge them into scalding hot water. This kept me up all night. Each joint was so painful that I couldn’t even hold a fork or cup. The main problem was trying to get the doctors to understand what I was explaining to them.
So the final diagnosis was both a rheumatoid arthritis and neuropathy flare at the same time. The treatment was to put me back on 10 mg of Prednisone again. I had been weaned off of Prednisone 5 weeks before after have taken it for 20 years for my Chronic Sarcoidosis. I was also prescribed Baclofen, which is a muscle relaxer for the severe spasms that started with the flare.
The swelling has receded some and my mobility is very strained because of the trauma to my body. The doctors have all stated that is all they can do because my body is too sick. This all to say, please keep me in your prayers. #MarilynsFightForLife #fibroflare #LivingWithChronicPain

Why should I be quiet? #MarilynsFightForLife

Chronic Flare up #livingwithachronicillness #fibroflare

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