So it’s been a while since I checked in. Last time I was experiencing a major flare-up which turned out to be a combination of neurosarcoidosis and rheumatoid arthritis. Very, very painful and life threatening. After being told that there was really nothing that can be done for me anymore except to keep me comfortable, because my body is very sick; I prayed and asked the Most High to help me. I am still fighting on, but to be truthful, my body is tired.
I am not able to get the surgery to fix my spine. The pain and spine specialist stated that pain meds are what’s needed to keep me comfortable. And most recently, my Pulmonologist stated that it’s time for me to start the process for a lung transplant. I am scared y’all. All of my doctor’s are in agreement. When we told, my husband and I looked at each other in disbelief. My husbands first question was ab
Waking up in pain everyday isn’t how I envisioned my life to be. Diagnosed 18 years ago and been living debilitating pain that no one could possibly handle on their own. Prescribed medicine’s do not work for my good. They just caused more problems, more pain.
Waking up in pain is not what I envisioned my married life would be. I hurt because I can’t be the wife that my hubby Karl needs. Instead of me taking care of him, he instead takes care of me. Causing an extra burden to be placed on his shoulders because of my stupid illness hurts my heart. Watching him age before my eyes. Saddening. Hurtful. Regretful. Sorrowful. In his eyes he loves me and I am thankful. Karl honors our vows to each other. Honestly, that speaks volumes to his character. Cares for me like no other. He is a blessed man of The Most High that was created just for me. I am blessed because he chose me. Selah
Waking up in pain each day is not what I envisioned my life as a parent to be. Diagnosed when my children were 12, 9 and 2 months respectively. Just babies themselves having to take on the role of caretaker to their own mother. Missing out on a lot because of me. Having one resent me because of it. Missing out on caring for the baby a lot because of the pain. They are 30 (KJ), 27 (Ka’miko Mai’) and 18 (Kimora-Lynn) now and I can truly say I am blessed that they chose me as mom from heaven. They make me fight each day to live. Even with the pain, I could not have made it this far without them. There are many others in my shoes that do not have the support system that I have and I pray for them everyday. But I am so thankful that my family loves me and stays in my corner. The Most High seen favor with me and blessed me with another daughter. My daughter Hadar, KJs wife, not only loves me but she is also an active advocate for me and Sarcoidosis. She helps me with my health choices and also with my life. She educates others about Sarcoidosis, making them understand what I struggle with everyday. She loves me and that is such a blessing.
Chronic pain, living with Sarcoidosis, living with an Invisible illness, living with an incurable debilitating disease and finally, living with a rare disease; this is my life. I fight through the pain, I smile through the pain, I live through the pain.
Peace and blessings to you always Warrior’s.
Well that time is quickly approaching again. I am having to recruit much needed help this year with the planning of the Marilyn’s Fight for Life KICK Sarcoidosis Awareness event in April. Thankfully I have those that are stepping up to the plate to help. In my weaking state I have been told to just concentrate on becoming healthy, step back and trust in God to provide what we need, and most importantly NOT 2 STRESS! Everyone that knows me know that I am my fathers child. My mind is thinking a mile a minute. But I digress. I will relax and Let Go/ Let God. I will update soon. Until then, peace and blessings.