fighting4acure

mommielynns.org/2021/06/14/new-diagnosis
#MarilynsFight4Life #fighting4acure #sarcoidosisawareness #Fibromyalgia #LivingWithAChronicDisease #LivingWithChronicPain #BreastCancer

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 am tired of dealing with doctors that just don't get me. My Cardiologist and Rheumatologist did not refill my meds. The want me to come into the office and not via TeleMed. I truly love my doctors, but not having meds to keep me alive and not in excruciating nerve pain is sad. After experiencing stabbing pains in my head everyday that lasts 35-40 minutes straight, and itching like I have chicken pox or something. All this kept me awake and also with the excruciating bones and joint pain; I cried all the time and felt alone. Finally, my PCP and my Neurologist had enough and wrote the prescription's that I needed. On top of having #ChronicSarcoidosis #Fibromyalgia and #RheumatoidArthritis and relying on 5 liters of oxygen 24/7; I can't afford to not have people in my corner that really understand my fight. I know we all have experienced something like this at one time or another right? #sarcoidosisawareness #LivingWithAChronicDiseases #MarilynsFight4Life #fighting4acure #Fibromyalgia #RheumatoidArthritis #LivingWithChronicPain

I haven’t posted anything in awhile due to my Scleroderma causing an issue with my heart again. This time is was something completely different than my usual A-Fib I dealt with 4 years ago. I had two Cardiac Ablations to correct that in Pittsburgh a little over 4 years ago, and have had no issues until now. Ten days ago I had a Cardiac Event called Ventricular Tachycardia, which is a heart rate above 230 beats per minute. Mine got to 250. I went to the hospital via Ambulance and the rythum broke in the ambulance. I stay two days in hospital on heart medication and was sent home to follow up with my TEAM in Pittsburgh. Locally the doctors wanted to put a Defibrillator in. It’s like a Pacemaker but it shocks you if in the event your heart goes into Tachycardia again.
5 yrs ago NO ONE in Buffalo would touch me or help me with my A-Fib issues so I was not confident they would give me the best care here. So I’m heading to Pittsburgh Monday. You see when your heart beats that fast they worry about the blood not being able to pump throughout the body and you could throw a blood clot. So it’s quite serious. I am extremely confident in my TEAM and if a defibrillator is what I need I know they are the ppl to do it! I want to THANK EVERYONE FOR ALL THEIR PRAYERS AND WELL WISHES!💙💙 I am nervous but I know I am strong and I have a ton of living left to do so scleroderma need to fall in line and coordination with the rest of my body because I’m not going anywhere. I will keep you all posted and please know that I appreciate all of you !!-A💙 #fighting4acure