Organized by: Cheryl Ann
My name is Cheryl Ann. I am married to a wonderful husband, Kevin, and have four children. I was officially diagnosed with lupus when I was fifteen, but doctors now believe I may have had the disease as an infant. I call myself the “poster child of lupus” and a medical student’s worst nightmare (or jackpot, depending on their frame of mind). If you name a lupus symptom, sign, or overlapping disease, then you can bet that I have experienced it. When my friend asked me to list all of my medical conditions, it took up one and a half pages, single spaced. Of course, it was an 18-point font because my vision is not so good due to my severe dry eyes and cataracts from prednisone use. Some of the “highlights” of my medical potpourri includes: central nervous system lupus, discoid lupus, multiple sclerosis, muscular dystrophy, psoriatic arthritis, fibromyalgia, Sjogren’s syndrome, Ehlers-Danlos syndrome, celiac disease, severe migraines, multiple strokes, and kidney and lung failure. I have a tracheostomy (hole in my neck) and a ventilator so I can breathe. I am unable to walk and am therefore confined to my room or wheelchair.
When a friend asked me to describe how difficult my life is, my husband suggested that I make a “Miss List.” Here is a shortened version of that list.
- I miss coming to the dinner table to enjoy a meal with my family.
- I miss attending my kids’ school performances and sports events.
- I miss dancing with my husband.
- I miss singing in church.
- I miss driving a car. (My kids and husband don’t miss this. LOL.)
- I miss eating solid foods and not worrying if there’s even a speck of gluten in it.
- I miss taking a bath, brushing my hair, and dressing myself.
- I miss peeing in a toilet instead of through a catheter and into a bag.
- I miss breathing on my own and not having to worry if the power will go out.
- I miss having friends come to visit without having to ask them to suction my trach.
- I miss having a sharp brain that’s not constantly in a fog.
- I miss having pain-free moments.
- I miss my independence and having privacy.
- I miss seeing my kids enjoying true childhoods that are free from caretaking and stress.
- I miss the times when my family didn’t have to constantly worry about paying the huge bills associated with my care.
Throughout my life, I have held many jobs and volunteer positions- usually revolving around service to people. Some of these past positions include: legislative staffer, teens and women program director, crisis intervention social worker, special education teacher, caregiver, and non-profit president. I have always been fiercely independent and have always tried to provide assistance to those people that needed help. I’ve always been the helper, not the “helpee.”
Although I was resistant to the idea in the beginning, a friend convinced me to create this fundraiser. It will help fund a number of major expenses, with the most important being an oxygen concentrator that I can use at home or outside of the house. The equipment that I currently use may be taken away at any time, which is a terrifying thought, since it literally keeps me alive. I also need constant in-home care coverage, when my husband and kids are at work or school. We also need to pay off our wheelchair-accessible van which transports me to my countless doctors’ appointments. And the list of expenses goes on and on.
I agreed to this fundraiser to ease the burden on my loving husband and kids, who have had to endure more than any family should. All four of my children also have various autoimmune diseases, and it will help with their medical bills as well. My youngest son also undergoes treatment for Asperger’s syndrome, and although he has made unbelievable strides over the past few years, it always weighs on me that he may start to regress. This also puts additional strain on our family because he needs to be on a costly special diet.
I sincerely thank you for taking the time to read this mini-novel. If it is in your heart, I would greatly appreciate any donation, no matter how small. Even if you do not donate, I humbly ask if you would consider forwarding this to a friend or even better- making a donation to any of the numerous non-profits that support one of the many diseases that I am living with. That would make me just as happy.
Please do not feel sorry for me. Despite all of my challenges, I have been blessed with so many beautiful and loving people in my life. This is why I continue to fight.
Love and God Bless,