When #Sheblossoms is not just about me – Lupus Diaries

So this is happening.
  

1. I have good friends. I have not lifted and will likely not lift a finger towards organising this. These days I get tired from just waking up so this is good.

I’ve been out of commission for about 8 months now. This time it was really out of commission. Usually, I hit a bad patch and I get a little housebound in recovery, but I keep my wits and continue working from bed.

I’m a writer, blogger and online content editor, so working from bed is doable. I take on editing jobs, ghost writing gigs and so on on the side and that’s usually also doable. I love teaching creative writing especially to kids, and talking about art and art solutions with grownups. A day in a week out is usually also doable.

But this time, this thing just knocked me flat out. This thing is called Lupus. Lupus is this mystery that everyone including doctors and health care givers struggle to understand. And this mystery gave me the knockout punch of the century. So I’ve just been sitting on the sidelines reeling.

2. I’m glad that in between friends talking about books, stories and art, there will also be more talk about Lupus. I believe that improvement in the way Lupus is handled in Kenya will happen only if more people are aware of it, it’s symptoms and how it affects those who live with it. #LupusAwareness

It all started when a bunch of my friends showed up at my house unexpectedly. These days my mum handles my diary. She tries to keep my stress levels down so sometimes she plans parties and I have no idea it’s happening until there’s so much laughter in the living room I just have to go out and investigate. 

So my friends showed up and we laughed, and just when exhaustion started creeping in, someone asked, ‘but how are you doing?’ It’s a loaded question to which I invariably reply to, ‘I’m fine.’

 There was silence. And more silence. 

So, I blurted out, ‘yeah, I’m fine. I am confused. I have no idea if I’m getting the right medical care. Everything changes every week. And I’ve maxed out my insurance, used up my savings and my mother’s savings, and I’m pretty sure the strain on dear old mzee, is about to start showing. (And I think – Oh, he would love being called mzee, but he is a dear, isn’t he?) and this idea about getting better care in India is just making me tired. Yeah, I’m fine.’

That’s how it started. 

Someone said, ‘We need to help.’

I said, ‘ I need help.’ You have to know me to realize how momentous a confession that is.

Someone said, ‘Ok, what do we do?’

I said, ‘ I have no idea, but whatever it is, it can’t just be about me. Can you imagine how many people are suffering like me, waiting at KNH, or using up every single cent in private hospitals, giving everything they have to survive, but more often than not just giving up and going ‘home’ to die?’

And then someone said, ‘But, what is Lupus?’

That’s what #Sheblossoms is about. I need help. But I also hope that an event that encompasses everything I love can be an opportunity to talk freely about an illness that affects so many.

3. May is Lupus awareness month. Organizations like Lupus Foundation of Kenya and people like Wemo Kitawa and G-baby Allan will be doing things to help you understand a little more about Lupus. 
  
In the meantime, just a little info to go:
Lupus is an autoimmune disease. This means that your immune system targets tissue and organs as if they were a virus, bacteria or foreign body. It can affect one or more organs, but most commonly connective tissue, lungs, heart or kidneys. There are several types of Lupus. The most common are:
Systemic Lupus Erythematous (SLE) which affects blood, tissue and organs.
Discoid Lupus affects skin.
Neonatal Lupus affects babies in womb and newly born.

Drug Induced Lupus is triggered by certain medications but can be cured once the offending drug is withdrawn.
I have mixed connective tissue disease. This is, as my doctor tried to explain an overlap of SLE, scleroderma and polymyositis. SLE is the strongest disease but at my worst the other two also manifest in the form of raynaud’s syndrome – my hands turn blue, difficulty swallowing and sometimes breathing and muscle weakness. The most common treatment for this is corticosteroid therapy. Unfortunately for me, this therapy triggered another disorder called Cushing’s Syndrome. Cushing’s Syndrome is characterized by abnormal weight gain, most of which is water weight, heart failure and blood sugar imbalance.
Secondary disorders are common for people living with lupus. At the height of my illness in the past 10 months, I had 14 disorders. I am still fighting 7 the main one being chronic heart failure. It has meant seeing a rheumatologist, cardiologist, endocrinologist, neurologist and nutritionist. 
Each doctor has their consultation fees, each one of them will send you for a gazillion tests, and then there’s the medications. The other option is to get on the KNH line, where everything goes slow. I don’t blame the doctors. KNH has some of the best trained doctors, but the medical system often fails them. The load of patients is too heavy and the support systems for doctors and healthcare practitioners is lacking. So the patient suffers. This is in addition to the fact that research into how Lupus affects negroid Africans living in Africa is limited, therefore medication and care is also limited.

I am a fighter, but I would really like to thank my family, especially my mum, and aunt Nduta, and Alexander Eichener for always being encouraging. My friends Anne Eboso Okongo, Wangari Grace, Julie Muriuki, Sony K Imani, Raphael Roba Ngunu and that other one who hides from social media for not giving up on me even when I am too tired to pick the phone up or get dressed and get out to do what we planned. 

This too will be overcome. I continue to blossom, like the desert cactus. When the sun is hot, I survive, when it rains, here I am, I blossom.

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11 thoughts on “When #Sheblossoms is not just about me – Lupus Diaries

  1. I’m praying for you… my friends and I will lift you up for as long as the Lord places you in our hearts, and the Lord will fight this battle for you – and we’ll fight with you the only way we know how. In prayer. You’re loved, and you’re beautiful, and you are a woman living out her life on the earth with a purpose that’s so much greater than her. I pray that the Lord use that in ways you don’t even imagine! That he would use this as a way for His testimony to spread to the ends of the world – for when and where you are weak, then my dear, He is strong. He loves you so much beloved. I don’t know you, but I feel your spirit, and I know he’s in love with you. He LOVES you. Wow. I pray that you would know this as truth – and that it would run as deep as deep can go… – nothing, Jane, not height, nor depth, nor angels nor demons, nor principalities, nor life, nor death, not even lupus, can separate you from the love of God in Christ Jesus! I pray that as you read this, He fills you up in ways you could not have fathomed. That he becomes so real and so sweet and so satisfying to you. That you would yearn for Him like the deer pants for that water. And that you would shine. Like never before, just shine. Thank you for your words. May they be turned around to be a testimony to the nations beloved. I bless you, and I love you so much!

    Your sister and friend.
    xx

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  2. Juliet! My free cake provider. You’re badass. Yes you are. And we’ve got your back in a small ways.

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  3. I just got wind of this on twitter this morning. I don’t know you personally but I believe that you are a fighter and this is no battlefield you cannot conquer! I shall attend the #SheBlosoms gig. #GodWillMake a Way.

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  4. You are such an encouraging spirit and a happy one, I can tell that even though I have never met you.
    I may not be able to attend the #sheblossom event but you sure will be in my prayers

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