I originally wrote this note in May 2016. A lot has changed since then, most notably my diagnosis, prognosis and my work with She Blossoms.
The first time I heard about Lupus, was when a doctor mentioned it in passing after he’d ordered some tests and they’d come back positive for anti-Double Stranded DNA. I’d been through a harrowing chest infection followed by a kidney infection. With my history of severe allergies and migraines, the doctor must have decided to give it a check. But he didn’t discuss his suspicions with me, and even when the test results came back indicating autoimmune disease, he somewhat dismissed it, and so did I.
That was in 2009.
I’m a writer. I love to research. So yes, I did research Lupus. But the combination of the very scary descriptions and the indications on prognosis made me dismiss Lupus even more. Like my cats, I went with, if I can’t see it, it isn’t there.
But it was there. I Went through a period when the symptoms were there but I could cope, go to work, see people, do things 🙂
In 2012, I went through a stressful period when my adrenal system started to act up. The symptoms abated, and came back a few times. I was in the care of an endocrinologist at the time. Sometimes it got so bad I doubted my sanity, even saw a psychiatrist who treated me with mood stabilizers for a while before recommending strongly that I see a rheumatologist.
I was still not in treatment for Lupus. I kept going, trying to live my life, do my job, love my people. My symptoms were treated when they got too crazy.
Finally, yet another doctor saw me in an emergency at St. Mulumba’s Hospital in Thika. I was in adrenal crisis, severely inflamed, nearly blind, in unbelievable pain. That led to the buckle down when I definitely had to see a rheumatologist. By then, I had also developed Cushing’s Syndrome, Left Ventricular Dysfunction with arrhythmia, Glucose Intolerance, hypothyroidism, indications of Metabolic Disease and Polycystic Ovarian disease.
The last one year has been a journey of pain, fear, and strangely beauty and empowerment once I overcame the fear from the diagnosis.
At one point I was incredibly furious at a doctor who felt that I needed to ‘understand’ that I really had less than a year to live and to make my peace with it. I walked around feeling angry at ‘the doctor’, and even a second opinion discounting that first prognosis didn’t help fix my anger.
In a way, that anger sort of tripped me into the next phase. It looks like denial, but I decided to take charge of my life. I changed my diet with the aim of reducing inflammation, started physiotherapy, which was hell at first, pushed myself into a regular exercise routine, made the decision to be consciously optimistic.
I have to live with Lupus. But I’ve made a decision to live with it on my terms. My terms are simple. Nothing will come between me and the beauty of life and love.
So what is Lupus?
1: Lupus is an autoimmune disease. Your body’s immune system attacks cells, tissue and organs as if they are a virus, bacteria or foreign body. Please see the list of symptoms here. There are about 200,000 cases of Lupus in Kenya. Many might be going undiagnosed.
2: It takes several doctors visits and more than a few tests to get a Lupus diagnosis. Lupus is the great imitator of other illnesses. Those must first be ruled out to finally get a Lupus diagnosis. There is no single blood test to diagnose Lupus. A doctor must assess your symptoms and run several blood tests.
3: Although you might need to see other doctors, a rheumatologist is best suited to help you diagnose and manage Lupus. There are only 8 rheumatologists in Kenya, as of last fact check on April 23, 2016.
4: People living with Lupus experience periods of disease intensity (flares) and disease inactivity (remission). During disease intensity, the cost of medical care exceeds KES 1 million on lower end and can rise up to KES 8 million and above per annum.
5: Insurance companies shy away from insuring lupus patients or charge very high premiums because of high risk factor.
6: Many Lupus patients suffer much more severe illnesses and episodes because they delay getting treatment until they have the cash.
7: Dealing with Lupus is trying to understand the complexity & mystery of Lupus, & trying to keep up with that paradox.
8: 3 broad categories –
Discoid – Chronic Cutaneous Lupus Erymathotus
Systemic Lupus Erymathotus (SLE)
Drug induced Systemic Lupus
9: No two cases of Lupus are similar, even when they fall under the same category.
10: It often helps to meet with and talk to other people going through the Lupus journey. The Lupus Foundation of Kenya runs a support group that brings patients together, and organizes a resource program for finding doctors who understand Lupus. I have found strength and support and I hope that I have provided support in some way to others who need it through this group.
The Lupus Foundation of Kenya will hold an event dubbed The Butterfly Effect on 6th of May 2017 to observe World Lupus Day as well as provide an opportunity for a meet and greet for members, supporters and friends. It should be an awesome learning opportunity for all. YOU are invited!
The entire month of May is going to be a month of activity for She Blossoms, the channel I’ve chosen to use for my health activism. Along with my team of She Blossoms volunteers and my partners in crime, Anne Eboso of All4Cars International and Kibali Muriithi of Lahani, we are working on a calendar of events which will be announced on Sheblossoms.co.ke.