Living with any rare disease is an hour-to-hour battle. You do not know when your symptoms will show up or worsen throughout the day. You might even end up with some new symptoms.
I live with indolent systemic mastocytosis (SM), and there is always something going on with me. It is hard to make plans because I do not know if I will be having a good day or a bad one. I have learned through the years to roll with the punches.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
I have also learned not to let symptoms worsen before I ask for help. Over the past year, I have had to seek help with physical therapy to keep my mobility. My legs weakened, and it was hard for me to walk because of back issues that cannot be addressed at this time because of osteoporosis. The PT did me a world of good, and I am continuing the exercises the therapists taught me here at home.
Learn more about SM therapies
Recently, doctors discovered that I have F2 liver fibrosis, and there is no real treatment other than eating correctly and losing weight. I have been on a diabetic diet for years now because of diabetes, but my weight has always stayed the same. Now that I know to keep my liver from getting worse, I need to find a way to lose weight and still eat a diet that is suited for diabetics and liver health. So I am seeking the help of a nutritionist.
Whether it is for your mental health or your physical health, you need to get in front of the problem and start working on it as soon as possible to prevent what you are going through from getting worse. I realize sometimes it is hard to ask for help because those of us who battle rare diseases are so used to fighting alone. It took me a while to concede that I cannot do it by myself. That is why there are doctors and specialists who spend their lives helping patients. Just because I ask for help does not mean I am not strong. It means that I am willing to fight with everything in me to keep myself as healthy as possible to live a long life.
I watched my sweet Mama neglect her health to take care of my sister, who had spina bifida. My mother would not accept help from anyone. She took care of Christy with everything in her for 17 years until Christy’s death. It was not that mother wanted to neglect her health; she just chose to put her child’s health before her own. Christy was always at the doctor or in the hospital, which made it hard for Mama. Our father was always on the road, driving a truck across the country, so she was alone with all of us constantly.
After the mourning period was over, and my Mama wanted to start living again, all the damage from years of unintentionally neglecting her Type 1 diabetes could not be reversed. She passed away seven years later at the age of 45, blind, on dialysis because of kidney failure, with nerve damage that prevented her from walking, and in a nursing home where she could be cared for properly. My younger sister and I remember the day we had to take her there and leave her. It was a sad, heartbreaking day. Before, she was an active person who loved to hunt, fish, paint and ride horses. She was a person whom everyone loved dearly. If only my mother had been able to take care of herself, maybe she would have met all her grandchildren. My oldest son did get to experience her love for eight years.
She taught me a valuable lesson. It does not matter how strong I believe I am; it does not make me weak to seek help. It will not make any of you weak, either. We all need to fight with everything available to us to ensure we are here to see our children graduate, get married and have kids and then see our grandchildren grow up. I would give anything for mine to meet the wonderful mother God blessed me and my sisters with.
