My name is Marilyn and I have an even tougher fight ahead of me, but know that I am a strong 💪🏾 Warrior fighting the good fight for myself, my hubby, my children and my soon to be grandbaby.🙌🏽🙌🏽
This year has definitely brought us trials and tribulations. Every one knows by now that I have been battling a very debilitating and painful disease called Chronic Sarcoidosis for 22 years now. It has caused me to be deemed disabled and relying on S.S.I. and oxygen support to live. While suffering from this disease (because the WHOLE family suffers together), my family has relatively been able to stay afloat financially throughout these years. What people don’t understand and realize is that I married a great man. My husband Karl (prior to my diagnosis with Chronic Sarcoidosis) was working as a Professional touring Musician for 20+ years. Working with the likes of the late great Bobby Womack, Lou Rawls, Teddy Pendergrass and Regina Belle. He worked also with The late great Clifford Brown, Dexter Wansel, MFSB Orchestra etc… My hubby shined on stage and everyone loved him. Then my sickness happened and that world stopped for him. I became unable to work, and he had to try to reinvent himself and remain true to his music and maintain the household. He tried to rebuild his life by starting his own recording studio producing music for such recording artists as KJ McNeill (our son), TM Wright (gospel artist), the late Thomas Clay, just to name a few. But also many many more who trusted in his musicianship, his knowledge of the industry and his mentorship. My hubby taught as an Adjunct Professor at Drexel University and Christina Cultural Art Center for many years. For me, Karl is a musical genius in my eyes. His very own musical creations was done as a collaboration project included within were many unsigned and signed artists. KMSR Enterprises Artists Compilation was released in 2005 on CD Baby.
I hated being the one responsible for his joy being shattered, but “life isn’t always rosy,” as my Grandmom would say. Now Karl has worked up to three full time jobs. Working for Comcast in sales, in music as an Independent Contractor, and playing in a church in West Chester, PA on Sundays. That is three full times jobs. Some might question my statement, but until you live the life of a musician, you will never understand the struggle to remain working. It is their livelihood to house, feed, and to maintain their families.
We were doing well until the pandemic hit and knocked out all arts and entertainment as well as Community gatherings, i.e. live Church services. He filled for his PPA twice and nothing. We did our taxes and was promised our refund in May. It’s September and nothing.
Now here is when it gets worse in chronological order: of course pandemic still going on January 2021. Karl is still fighting for his PPA
April 2021: Chronic Sarcoidosis flare, ordered to increase Prednisone (steriods) and taper down dosage every two weeks. Karl is still fighting for his PPA. Couldn’t afford all of my medication so I had to stop quite a few.
May 2021: flare subsiding but noticed major disconfiguration in my right breast and Lymph nodes under my arm. Called PCP for help and was told to ice, take pain medication and schedule my yearly mammogram with caution. Karl is still fighting for his PPA.
June 2021: my birthday and rushed to ER because of breast swelling and pain. Ordered to get emergency mammogram (stat). After mammogram, ordered an emergency ultrasound of breasts and emergency biopsy of both right breast and Lymph node. Met with breast Surgeon and delivered the bad news. Triple Negative Breast Cancer with the possibility of surgery. Due to severe weather conditions the roof of our shed was destroyed. Fined by the Sheriff Department because it was reported as a public nuisance. Didn’t have enough money for repairs. Karl had to dip into our housing Funda for repairs. Karl is still fighting for his PPA.
July 2021: series of CT Scans, MRIs, chest x-rays and blood work. Port Placement to receive chemotherapy. Shed restored thanks to help from my Niece and Nephew. AC in the car died. Karl is still fighting for his PPA.
Karl is diagnosed with clinical de
August 2021: Liver Biopsy and diagnosis that there will be no surgery. HVAC died. Having to stay in on room because breathing becme restrictive in extremely hot house. AC in our car fixed. Started chemotherapy. Karl is still fighting for his PPA. Received a denial letter and filed for an appeal. Diet restrictions and more medication prescribed.
September: Received 2nd dose of chemotherapy. Karl was told that we might lose our home. And I was told that I am on the verge of Congestive Heart Failure because my body is not ridding itself of fluids.
With this, we are asking (really begging) those who can, donate to our Go Fund Me page to cover our needed expenses and help to reduce our stressor during this major battle in which we are fighting. https://gofund.me/b3ceb047
Peace and blessings to you always 🙏🏽😊