“Lupus changes People. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately.”
When we sat down to plan the year at She Blossoms, we decided that 2017 was the year of Hope, so all our events are Hope events. But a secondary theme for this coming Sunday’s concert is ‘Lupies are People’.
It is probably something you have not thought much about. When you hear of cancer, diabetes, heart disease, Lupus, you don’t think of it in terms of people unless and until it touches someone in your family, someone you love, You. Then it stops being some scary monster that lives on the street that you have to evade but have never faced.
Now the thing with Lupus is that in most people, diagnosis doesn’t spell terminal illness. With care and management, most people living with Lupus can live long lives. However, living long lives doesn’t mean that they do not suffer the effects of the fact that they have an autoimmune disease, that basically, they’ve got a part of themselves hellbent on waging war on their bodies.
A person living with lupus will always have to avoid sunlight and UV ray emitting light sources. They will have to use sunscreen, umbrellas and hats. A person living with Lupus will have to avoid certain foods that overstimulate the immune system. Also, as long as they are on medication, a person living with Lupus will have to avoid exposure to possible infection sources. They would have to avoid exhausting themselves, excessive stress, overindulgence in alcohol as all these can trigger Lupus flares. They would have to have several medical examinations and laboratory tests a year in order to monitor their state and catch changes as neglected flares can result in severe illness and or organ failure.
Now, to cope with all of this, and yet continue living life, loving friends and family, working at a career, that is the challenge. Being sick is easy compared to the challenge of living life.
I am awed at Lupies who embrace life with everything they have; raising families, working hard, at life and play, in spite of the storms they have to weather because of Lupus. These are the people I want to celebrate.
Moms. Dads. Awesome Daughters and Sons. Wives. Husbands. Girlfriends. Boyfriends. Doctors. Artists. Writers. Accountants. Lawyers. Administrators. Business Persons. I have met so many and they don’t seem to think that Lupus should stop them from being the best.
I observed the other day, that in spite of the sentence we all receive on the day we are diagnosed, that Lupus is a lifelong chronic illness, many of the people I know who live with Lupus do not consider themselves sick unless they are on a hospital bed hooked up to an IV. Everything else is normal Lupus Life. In fact, it would usually take a lot of pain and discomfort, possibly a near death situation for a Lupies to go to hospital. The doctors scold us, but its the truth.
Someone commented that all the Lupies he has ever met are always smiling like they are having a good time. He was saying this to me while I was hooked up to a bag of antibiotic IV. I think he was more than a little miffed when he asked: What is it? What makes you so happy? Why?
I wanted to garner some higher level response but I was too drugged up, so I said.
Because Lupus adds spice to my life.
I hope you will come through this weekend, because you will get to meet and hear from a few people Living with Lupus. You’ll get to hear from them how Lupus has changed them, made them stronger, made them better.
Advance tickets will be available till Friday 5pm via Mpesa 0725758389. Tickets will cost 500/- at the door.
She Blossoms for Lupus – A Concert for Hope will be held at Shalom House, Daniel Comboni Rd, Off Dagoretti Karen Road on Sunday 5th March at 3pm to 7pm.
The concert is curated by Lahani’s Kibali Muriithi and sponsored by All for Cars International.
See you there!