Latest
Wow, what a way to celebrate a birthday?
mommielynns.org/2021/06/14/new-diagnosis
#MarilynsFight4Life #fighting4acure #sarcoidosisawareness #Fibromyalgia #LivingWithAChronicDisease #LivingWithChronicPain #BreastCancer
4 comments
sarcoidosisawareness
Join the Conversation on
67 people
0 stories
4 posts
What's New in
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo
Dealing with #chronicpain #MarilynsFight4Life #fighting4acure #sarcoidosisawareness
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
1 comment
Post
Back to school 2020 #sarcoidosisawareness #ChronicIllness
This year, back-to-school is not what it used to be for anyone. For parents, the hardest question is whether to send the children to the school or to do virtual. The risks of both decisions. The consequences of either could be detrimental to our kids well being.
Now imagine that on top of worrying about your children's safety, you also have to factor in being an immunocompromised parent. In my case, I have #multisystemicsarcoidosis . I am currently taking a daily immunosuppressant, methotrexate weekly and remicade infusions every 7 weeks. I also have no spleen due to #Sarcoidosis so I really have NO immune defense.
I have 4 daughters, grades 10, 7, 5 and 3… All of the girls have many reasons why in-person schooling would be most beneficial to their education and social development. I feel selfish to keep them home because of MY deficiencies. Children NEED social interaction, one of my daughters has an IEP which includes an hour 1-on1 with a resource teacher 5 days a week and distance learning did not go well for her. Another daughter is a straight A honors student and her grades dropped significantly at some points during distance learning.
I am so conflicted about this coming school year. The schools do not have proper ventilation, our state currently has a 15 person limit due to covid but the classrooms will have many more people. What if ONE student in one of their classes tests positive.and one of our kids catch it. And what if they pass it to me. The chances of me surviving covid-19 are not good. The thought of my daughters living without me is devastating.
What would you do in my shoes? Keep the kids home? Let them go to in person schooling?
#ChronicIllness #Sarcoidosis #Parenting #parentingwhilesick #ButYouDontLookSick #Conflict #BackToSchoolFear #nospleen
2 comments
Post
We at Sarcoidosis of Long Island aq
Sarcoidosis of Long Island had a great day for #RareDiseaseDay #RareDiseaseDay2019
#sarcoidosisawareness
We had a Billboard for Rare Disease Day in Times Square at 42nd St. and 7th Avenue. Check it out!
drive.google.com/file/d/19Jiznq9riaKVIRowOgiEzW1lKtCCcpZq/view
