Chronic Illness and Living a Life Without Compromise

"The dream is yours" is a great reminder I'll carry with me this week. Best wishes pursuing yours!

Hello My fellow Sarcoidien Mr. Harris, It has been said out of 100% of what happens to us, 10% is the situation, 90% is how we react. Five factors have, and still play a role with my long time companion, Sarcoidosis. My major issue is Pulmonary. In addition to COPD & EMPHYSEMA (2004 Second-hand smoke) I am going on 38 years. As my five factors that to years for me to a certain point. 1. Acknowledgement, 2. Acceptance, 3. Tolerance, 4. Patience, 5. Endurance. I tackled one at a time before going onto the next. Though initially not knowing anything about this disease, of which I hadn't heard. Didn't know why I acquired it. Find out later my sister has Sarcoidosis, Breast cancer ( in remission) , Hodgkins disease. A younger cousin who passed away, she had both Sarcoidosis and Lupus. She was very young, early 20's. The first 5 years were challenging because of serious physical, which led to emotional challenges. You see, I'm 5'1". Before Sarcoidosis, I taught Aerobics, and also taught dance. Friends and students referred to me as the 2nd Debbie Allen. While being a Junior High School Instructional Assistant, I started my own dance troupe., made up of 7th 8th grade students. They loved the experience. My last year at the school, for Black History month, I produced, directed, choreographed various music styles beginning with Africa up Mr. Jackson himself. One of the art students designed & drew the background scenes for each dance. It was the first time, I was told that a non-teacher was ever permitted to stage a 2 hr program in the school's auditorium. I was a PROUD mommy. One day at practice, I was taken to the hospital, they said a muscle spasm. I was showing a flying leap and a pain hit me. A few weeks later an excruciating pain in my shoulder area. The doctor had x-rays done, only to be told I had something called Sarcoidosis. I was admitted and kept in West Jersey Hospital, Ephraim Avenue, Camden, NJ. My first bronchoscopy was performed, no sedation. Tests, tests, and more tests. I was put on 10 mg Prednusone for maintenance. Oh Ms. Smartee, began to feel better, so I stopped taking the medication. A NO! NO!. I did myself more harm than good. It was the school nurse who educated me about Prednisone.. You just can't stop midstream. Now I was put on 80 mg daily. So now because of my voracious appetite, I went from a size 8 to a 16. These were my worse two years. I didn't want look in the mirror. I was called 'Chipmunk Cheeks'. When I used to watch the show 'Fame', I would sit and cry. Medications galore. One major excruciating problem, Anything I ate I was in pain. My routine for at least 3 months was to lie down on the floor, and writh about for 45 minutes. Come to find out, I had a Dueodenal Ulcer. Went from Taganent to Zantac, Lactaid Milk (yuk) An unexpected opportunity came for me to go to a business school. Not looking to get a lot out it, but I did! Before I graduated, I was placed on the President's, then Dean's List with a 3.6 Average. But this was not the height of my making a difference within myself. To get to school, I had to catch a shuttle bus. That would be located at Olney & Broad Street. To get to and from Plymouth Meeting was about 50 minutes or so. For whatever reason this particular day returning from school, I didn't have enough money to get Septa. Picture this: 5'1" about 180 lbs. I had two full bags of books, and had on shoes with 2 inch heel.. To get to Marshall Street. What was I going to do? I walked. With a full bag of books in hand, I'd walk 4 blocks, Stop, so and so forth. This continued, me fat and struggling for every breath. I tell you, the victory was when I finally made it to the corner of my block, I celebrated like it was 1999!! From this point, I knew I had accomplished something greater than myself. This is when those 5 above-refernced facets began. My POSITIVE attitude has never changed, # 1 my spirituality. Before our graduation, I had lost weight, my instructors did not know who I was. I tell you, it was my personal victory! And although, I have more health issues now, I, like you Mr. Harris, am happy to share to let folks know they too, CAN get through this!! Please embrace these five facets. They have tried & tested. The best to you all. If you ever wish to cry, vent, share, I'm here. I will respond. Feel free [email protected]

Have had sarcoidosis since I was 29
Stage2 .now stage4 65 yrs
Old. living my best life 🤗🤗✌👍🏼🤟
I fail in love with me 😊😊🙏🤗👏🦋🤗🤗

Charlton, thanks for the good read. You bring up a lot of good points. Sometimes we are our worst critics and our own enemy. Sometimes tho, we have to toot our own horn and point out our achievements to others. But first we have to educate others on our condition so that they'll understand. Not just understand our medical condition but what are achievements for us now. And that in itself is a challenge and can be one of the biggest problems we face. In fact, I've tried explaining it to my own family that there are days when I am physically limited and instead of gaining an understanding or their help, I was told that I am only "playing victim". My husband recently passed and I was going to be moving in with a brother and his family. They won't have me now because I am "playing victim". Never mind any of my achievements while battling The Beast. So now I will be navigating this Sarcoidosis Journey as a homeless person. I guess with the diagnosis of Sarcoidosis there comes challenges we could not have foreseen or even imagined. Hope to be back and commenting here but I'm having to take a little detour for a while. Take care and keep writing!

Stage Four is permanent scarring/fibrosis. Doesn't mean you are going to die but the scarring is irreversible. I have Stage Four and breathing with about 49% lung capacity, thus the reason for oxygen 24/7. But it isn't the end of the world. Only ticking off rude and insensitive family members are but not Stage Four Sarcoidosis.

Update: After a few nights at a hotel, a family who barely knows me took me into their home. A miracle! I hope to be approved for Widow's Benefits so I can move into a cheap apartment of my own. Meantime, I am with my wonderful "new" family in their warm and loving home with a roof over my head, a room of my own, food AND my oxygen concentrator. I am very wore out, can only walk about 30 feet and need to rest but have now somehow managed to avoid being homeless on the streets and looking forward to a new chapter in my life -all while having Sarcoidosis! It can be done! Will I write a book? I don't know but I will tell people my story. I'm still living it. Can't wait to tell my doctors...they will probably throw a fit but the fact that I'm still alive and planning a future ought to put their minds at ease. Well, I said "ought to". You know how doctors are...