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.
It 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.
In 2016, I traveled to India where I underwent rigorous testing to see what I was dealing with. Finally, I was diagnosed with Undifferentiated Connective Tissue Disease.
It hasn’t been easy keeping up with my symptoms, the different medications, doctors’ appointments, numerous blood and imaging tests that have to be repeated often to monitor the disease, side effects from medication and often opportunistic illnesses that develop as a result of being immunocompromised.
I have to live in this autoimmune world. But I’ve made a decision to live on my terms. Nothing will come between me and the beauty of life and love.
One of the things that make it possible for me to keep going, is the commitment and determination to raise awareness of Lupus and the challenges that people living with autoimmune disease have to face everyday.
This is why the month of May is so important to me. It is the one time I can join the rest of the world in increasing awareness about Lupus. I have been doing this with the support of friends, loved ones and the Sheblossoms community.
World Lupus Day falls on May 10 of every year. World Lupus Day serves to rally lupus organizations and people affected by the disease around the world for a common purpose of securing greater attention and resources to end the suffering caused by this disabling and potentially fatal autoimmune disease.
In 2020, the spread of the Corona Virus pandemic throughout the world means we cannot do World Lupus Day as we have before. Traditionally, Sheblossoms has organised a live Lupus Awareness concert along with other talks, presentations and meetings during the month.
Sheblossoms is, however, organising an online event that you can watch or access from the appropriate safety of your space. Keep an eye here and on Facebook and Twitter. for details on the World Lupus Day events.
If you have a story to share with the Kenyan Lupus community, as Lupus patient or caregiver, please feel free to drop me a line in the comments or on the social media pages above. If you would like to join the WhatsApp support group. I will be happy to connect you.
I can’t wait for May to start!
Please Stay Safe. Wash Your hands. Don’t touch your face. Wear your mask. Wash your hands. Stay Appropriately Distant. Wash your hands! Stay COVID19 free!