The Plan – Lupus Life

Are you one of those people who has always had a blueprint of your life? Always known that after school, you’d go to Uni, then get a job, find the one and get married, have a bunch of mini-mes and watch them grow beautifully to adulthood, and then retire with the love of your life to the countryside in opulence? Or maybe after the kids grew up, you and the love of your life would go travel the world and fill out your bucket list?

I have never had a solid plan for my life!

As far back as I can remember, my life has been about putting one foot in front of the other, getting to tomorrow. It’s always been about surviving today.

I was born a sick child. My current doctor thinks I may have had Neo-Natal and Childhood Lupus. Lupus is an autoimmune disease, in which the immune system goes rogue and attacks cells, tissue and organs as if they were infections or foreign bodies. I was not diagnosed while I was a child, but the symptoms seem to fit in.

I spent the first 10 years of my life in and out of hospital, with so many disruptions to my childhood schedule. Because of this, I basically never fit in with my schoolmates, or potential playmates my age.  I learnt to occupy myself by reading everything I could get my hands on. My mother indulged me and provided all the books I could ever have wanted.

My situation as the little sickly child often left behind made me so very vulnerable. An abuser was quick to identify me as a victim. He worked his web around me, isolating me even further from children my age, and from my own mother, and doing it so cleverly in the name of God. He pretended to be helping me and my mum, who was a single mum working long hours to provide for her children.

When I was 12, I found the courage to tell my Mum, and Mum defied so many incredible odds to make sure that man was put behind bars. It was something he never thought would happen when he said, ‘No one would believe you.’

Those 4 years of being sexually molested by a monster hiding behind God left me scarred emotionally. But soon after that man was jailed, my illness seemed to lift.

I became a very active teen. I was dealing with depression and anxiety, for which my mother did everything she could to get me mental health support, but physically, I was at my best.

‘Juliet, slow down!’ I must have heard this so many times from my mother, my teachers, and other authority figures. I moved like a storm. I took on too many things. I lived like I was making up for lost time, or living on a deadline. I think it was both. But behind it all, I was very depressed, very anxious.

When I turned 19, the shroud of illness came back. At first, it was just severe migraines that lasted days. They only came about once a month. Mostly, they danced around my menstrual cycle. Once in a while, one would hit me after an emotional upset. Unfortunately, the late teens are prime time for emotional upsets.

I should have gotten used to my life not following any kind of plan. I completed high school at 16 years of age. This was partly due to my childhood illness. I spent so much time confined to a bed, so my mother occupied me with lessons. When I went back to school, I’d be far ahead of my classmates, so a few times the decision was made to let me move to the next class so I wouldn’t be too bored.

After sitting my KCSE exams, however, I found I had to wait two years to enter a public university. This was standard practice countrywide for all high school matriculants. But my age and the lack of an identity card which is issued at age 18, also played a part.

At the time, this did not bother me much. I filled my life with sports, volunteer work and part time jobs around my home town, Mtwapa. I loved working with kids, and my mum had several friends with young kids, so it wasn’t too hard for me to be paid to watch out for the kids on a few afternoons or over a weekend while the parents worked or went away.

But then I turned 18, and unfortunately found I couldn’t join university. This time, it was because there was just no money. My family’s financial situation had changed drastically. This hit me a lot harder than I expected.

In the year, it took me to turn 19, I also lost my brother in a violent shooting incident. That, in itself, was enough to floor me emotionally.

In spite of it all, I kept moving, one foot in front of the other. I needed to survive.  So, I did.

I never went to University, but I did get an education, an unconventional one, a lot like my life. I put together 2 years’ worth of coursework in Early Childhood Education – which is what I wanted to follow as a career – and some Creative Writing course work. I studied Publishing Procedures, and put in some course work into Communications and then later, Human Resource Management. Through the 12 years it took me to gather up all of these, I also worked, sometimes as a volunteer, and later as a paid employee.

I worked through as a crèche assistant, and later as a teacher assistant in a Kindergarten. I stopped working with babies and toddlers because I found that my immune system just could not cope with being around babies.  I volunteered for a term teaching English and Literature at a chartered school, then in the same year I started my internship as a writer / editor at a publishing firm. Much later, I made the decision to switch jobs and explored the communications field while working for a literary festival.

Through all of this, I suffered. I suffered migraines, severe fatigue, joint pains, severe anxiety and depression. But I functioned. I functioned through it all.

I was diagnosed with Systemic Lupus Erythematosus when I was 27. At the time the symptoms were mild, in my opinion. I think this is why it was so easy for me to dismiss the diagnosis and make an attempt at continuing to function. One foot in front of the other.

I didn’t really have a plan, except to survive.

I think this fact, my not having a particular plan for my life, contributed a lot to how things worked out with a lot of things in my life, my friendships, my relationships.

On the one hand, I felt this urgency, like I was on a timetable. There were so many things I wanted to do. Sometimes, those things were more than my body could take. But after all that blitzing, I was not really going anywhere.

I didn’t want to build a business empire. I wasn’t very sure about marrying ‘the one’ and setting up a life in a nice little fenced compound I couldn’t escape from. If anything, my day dreams only floated as far as writing a bunch of young adult novels and maybe a volunteer job working with children in some capacity.

This was such a disappointment to certain persons who expected more from me. My only goal in life was to survive the day.

And I did survive, right up until the day my heart couldn’t take it anymore. A heart attack is what stopped me and right there, while clutching at my chest, watching the lights fade away, I knew what my plan was.

I want to live.

I want to live with everything I’ve got. I want to love with all my heart. I want to sing, and dance, and try out new flavours of ice-cream, and figure out what it is about flowers that makes me smile.

I don’t want to live in fear any more. I’ve chosen to believe that I can overcome my worst fears if I try. And I do. I will not carry grudges in my heart anymore. I forgive. And I forget. I may not let repeat offenders into my life again, but I will not carry grudges.

Most importantly, I will forgive myself. I forgive myself for the times I was not as strong, as smart, as decisive and as determined as I think I should have. I forgive myself for the times when I have been human; prone to anger, jealousy, fear or apathy.

I will give of myself, to send positive ripple effects to those who need it, through sharing my hope and faith, through small kindnesses, through spreading Lupus Awareness, and through working as a literacy advocate.

I’m figuring out so many things yet. I have a lot to learn about life, love, hope, courage and defying odds. This means going out of my comfort zone. I find that the more I dare, the easier it becomes. So I’ll keep daring, and living and loving.

That’s the plan.

Calling Out for a Good Cause – Start a Library for Rabai Road Primary School 

I wonder if I should do a 2016 highlights post. I did one for She Blossoms at which point I realised just how much She Blossoms had grown and how much it was no longer about me. 

I’ve grown too. One sign of that is my ability to care about several different things without going completely crazy. If you know me, you know how much I care about literature, literacy, and lupus awareness. 

I must admit though that in the last few weeks I’ve felt my heart break a little bit because of one of those. In late November, Start a Library asked me to support a campaign to raise funds for libraries. Now, Start a Library is an engine that fights the literacy crisis in Kenya by starting libraries in schools and training teachers and students to run reading for pleasure programs. If at this point you are wondering ‘What Literacy Crisis? ‘ please take some time and watch this video: https://youtu.be/cifn06aQ1oY

Now the child in that video is a real child, with real dreams and real hopes, but if at that age, in that level of schooling, she still cannot read material meant for children 5 years below her, what will happen to her? In just one year, she will be expected to sit down and answer questions in an examination written in a language she barely understands, let alone reads. 

The problem is that this is not an isolated case. You can’t mark these children as outliers, say for example that they suffer learning difficulties. If in fact a child in the Kenyan education system has learning difficulties and is not visually or hearing challenged, then that child is more than likely doomed. In the latter case, there’s a chance they might get help in a special school. But that isn’t to say their situation is any better. 

In a country where we are so used to things being broken, we need to start learning how to fix them ourselves. This is Start a Library’s vision. In many instances, Start a Library works with local communities to find solutions to the literacy crisis. In Makueni County, Start a Library partnered with the County government and the First Lady in raising funds, training teachers and students on library maintenance and on reading programs and in setting up monitoring and evaluation systems. This was a huge undertaking as 30 libraries were launched in one day on 29th November 2016.

Meanwhile, here in Nairobi, 3 schools are in dire need of Libraries. Rabai Road Primary School, Muranga Road Primary School and Arya Primary School. No child, and no school should be left behind. 

It costs approximately 750,000/- to set up a library – books, training and monitoring. When I was asked to help the campaign this is roughly the amount we wanted to raise times 3 for the 3 schools. 

I’d like to thank everyone who has responded to my whatsapp broadcasts, private messages, texts, tweets, call-outs, it means so much to me to see your names on the lists of donators and know that you care about literacy as much as I do. Thank you. 

But I’m here again because I need your help. I want to get that library into Rabai Road Primary School in January. I’m pretty certain that we can do it, if we work together. 

If you haven’t donated yet, please look into your pocket and see if there’s a ka-hundred or a ka-thau and Mpesa it to Paybill 202211, Acc Startalibrary. 

I know loads of my friends have stretched out and donated not just to this but also to other causes I’ve sent your way and it means a lot that you do. If however, you feel sufficiently philanthropic, and there’s an extra five hundred somewhere, please help me get this Library to this school. Thank you so much! 

This is our world, and some movements might seem like bleeding heart options, but I truly believe that we change the world one life at a time. 

Your heave and push will help, and if you know someone/persons who can support this in a larger way send them this way. My email is juliet@storymojaafrica.co.ke in case you/they would like more information about the Start a Library Program or about the Schools. 

To support now, simply follow the instructions in the image below. 

Donate by Mpesa Paybill 202211; Account Start a Library. To donate by card or PayPal, visit yetu.org/startalibrary

To see about the 101 Libraries already installed by Start a Library, visit startalibrary.org.

Thank You & GoodBye 2016 – She Blossoms Lupus Trust [Reblogg]

2016 has been a very interesting year. For one, She Blossoms’ journey as a Lupus Awareness Movement was born. It’s been an awesome learning curve so, and we expect more adventures in the days to come. For this, we have so much to be grateful for. 

It would only be fair to look back and mention some of the highlights. 

👉  Here goes.

Heart Don’t Break Even

I’ve spent the last few weeks trying to get my life back together. Get back to work. Get back some semblance of sanity and adulthood. I’m thinking of moving back on my own again, so I need to figure out my finances. Figure out my taxes – I can’t get around that one yet because I’m stuck as a director in a freaking company I don’t freaking own because of some stupidity I’m unable to deal with right now.

So him walking in in all his glorious beauty into my thoughts and emotions right now is a really bad idea. But oh well, he walked through the door, so I’m stuck between ‘You’re just somebody I used to Know’ and ‘When a heart breaks it don’t break even.’

Emotions can be messy, and they can be even messier when you are dealing with a chronic illness. You are just never sure if anything that goes wrong or right, is because of who you are, or because you are chronically ill. Having a clear head can take everything you’ve got and sometimes it is just not possible.

I think for me, being aware of this fact is the first step. The next step is having someone who will really listen without judging or trying to impose their thoughts and preferences on me. Writing things down in a private notebook, cons and pros as I try to make a decision also helps. Taking my time instead of rushing to conclusions is incredibly hard, but it is also a good idea.

What helps you? I’d love to hear from you.

Bring Carol Home – Lupus Diaries

I’ve said it before, I’ll say it now, Lupus is an incredibly challenging journey. Every single Lupus survivor I know is an amazingly tenacious soul. It’s the only way to keep on the journey of life while coping with everything Lupus throws at you. Be tenacious and resilient at heart. ♥ ♥ ♥

A few weeks ago,  Nelly Mwendwa contacted me about her cousin, Caroline Mumbua, who has been fighting extra hard to survive Lupus. If you watched my life profile on BrandPlus TV you may have heard me say that firstly, Lupus doesn’t just affect the person who is sick, it affects the entire family or persons who love the sick person. Caroline Mumbua’s family has been affected by her illness emotionally, physically and financially.

The second thing I noted was how expensive living with Lupus is. It drains everything. The choice is between going without medical care and suffering from an autoimmune disease that keeps getting worse everyday until you die, or using up thousands and thousands of shillings every day. Let’s allow Caroline to tell us her story:

“My dear friends, my name is Caroline Mumbua. I’m 24 years old. I am currently in India as I was diagnosed with a disease called Lupus. Lupus is a chronic autoimmune disease where the body’s immune system becomes hyperactive and attacks the healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs.

Before being referred to India for treatment, my family had spent close to 2 million shillings in a bid to save my life. Now in India, Lupus is getting suppressed but Doctors are no longer willing to treat me because I currently owe the hospital 3 million shillings.
My father passed away in June last year (2015) and my mother is with me in India while my only close relatives are working night and day to get money and pay for my medicine, regular dialysis (done weekly)and surgeries. It weighs heavily on them. It breaks my heart to see people I love struggle so much to take care of me.

I have fought to live because I am a strong lady; my family has fought with me and continue to do so because they believe in me, and I kindly request you to fight with me too.

Prior to my illness I had just graduated from Kenya Institute of Mass Communication and I still strongly believe that I am coming back home to heal and get started on my career as an editor.

I want to come back home but I need your help to do so. ”

Several attempts have been made to raise funds to Bring Caroline Mumbua. This time Kenya Lupus & Kidney Foundation in conjunction with Share Love and IncreativesKe have planned a fun event titled Bring Carol Home Photo Shoot at the Nairobi Arboretum on November 27th from 9am. Please show your support for a fellow Kenyan and amazing Lupus warrior. Please see the image below on who to contact for more details.

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You can also donate direct to Mpesa Pay bill 891300 Account 8557. See other options in image below.

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To Caroline Mumbua,  from a fellow Lupie who has come home from on New Delhi, India and is still on the long journey of Lupus Chemotherapy: Have Faith, and Hope, and Courage. You can do it.

To everyone else, Lupus is a cruel chronic disease. We need your support to raise awareness, to call for more in country research and better medical care.

Visit the She Blossoms Facebook Page. Join weekly Twitter chats on #AskaboutLupus. Join our Lupus Support Community.

Familiar New Delhi – #Lupus Diaries 

My mum and I love adventures. To be more precise, mum loves adventures. I inevitable get dragged along. Coming to New Delhi for the second time was probably a lot more stressful for me than it was the first time. The first time, I was too sick to care and worry about stuff. I got so intensely sick on the flight I thought I was going to die mid air. When we arrived I was rushed straight to the emergency room for rehydration and pain management.

This time, I was acutely conscious through check in, boarding and on-flight. I had time to worry and freak out about stuff. But once I put into work the relaxation techniques I’ve been learning, I settled enough to enjoy some of the flight.

Arriving here though things went just a little awry. Because of the usual financial constraints we wanted to find cheaper accommodation. Our patient advocate was hesitant but he took us to a cheaper guesthouse. The problem is that cheaper accommodations outside of the usual ones vetted by the hospital can be a little, okay, a lot iffy. The patient advocate left us there but said he was on call in case there was a problem.

I was too tired to care, but mum did her usual inspection once we were alone. I guess she didn’t want to scare me because all she said when she got into bed was that we probably would have to change hostels. I just slept on.

When I woke up, mum was sitting in a chair at the corner of the room. I barely mumbled good morning and stumbled into the bathroom.  Which is when reality kinda kicked in. The bathroom wasn’t clean and smelt like old fish. And with that my germ phobia totally woke up.

I went back into the room and told mum about the fish smell. She showed me the dirty floor and the dust on the window sill. And then she said she was pretty sure the bedsheets had been used and not changed. I freaked out. Mum called the patient advocate who said that he could try and find another cheaper but clean guesthouse, unless of course we wanted to go back to the hostel we had stayed at before. 

Let’s just say, getting back to Bajaj Homestay, to familiar faces, and clean bedsheets, that was so good!

Once I settled down, mum giggled: “Well, that adventure is over.” To which I proceeded to lecture mum on how dangerous her little adventures are to a person living with Lupus. I didn’t tell her how much her little adventures taught me about things and life in general. 

Ask me about the transgender babe named Preeti who knocked on our door looking for Kuria, the Kenyan man who was apparently in our room before and may have run away before paying her. Tomorrow.

P.S. I have two pieces of good news.

1. Thanks to you, the She Blossoms Lupus Trust has been nominated for the #OLXSoMa2016 under the Best Use of Social Media – Social Responsibility Category. You can vote for us at soma.or.ke/vot or send 23D to 21195

2. Lupus Awareness has its own cycling team for the Tour de Machakos on October 23-27 2016! Look out for Velo Nitrous who are currently in intense training. Isn’t that amazing?!

Chapter Two – #Lupus Crisis Management (#OptionIndia)

As I prepare for my second trip to New Delhi, I am reminded of how I got here. It is not even possible to mention everyone who has supported me through this journey. Just know how grateful I am from the depths of my soul.

If I had any doubts about my willingness to fight and survive Lupus, those doubts are continually challenged by the awareness that I must honor this love shown to me by living long enough to pay back the universe with some good.

Allow me to mention just one this time: Peter Elungat showed me such immense kindness and generous its by donating his beautiful work of art to my medical fundraiser. By coincidence, this work also reflects my main love – books & literature. It is called *The Untold Story*.

The Untold Story

The Untold Story

You can contact Elizabeth Maruru (mom) on 0722580936 for purchase and viewing information. However, since mom will be accompanying me as my caregiver to New Delhi, it might be prudent to drop an email to julietmaruru@gmail.com and I’ll direct you to the person left in charge of the painting.

Peter’s generousity was followed by two more donations of works of art as well as cash donations which have topped up what my family had raised and now make it possible for me to make the second trip to New Delhi. I am aware that we are still a few thousands short of the estimated cost of my medical care. I don’t know how this gap will be filled, but I am grateful for all the kindness this far.

As at this time, whatever does happen,  my family is dedicating a percentage of the sale of all paintings donated to my fundraiser to #LupusAwareness, patient support and patient advocacy (under She Blossoms). In addition, whatever amount left from the proceeds of the sale of the paintings (after treatment and management of the current Lupus Crisis I am undergoing now) will also be dedicated when the time is appropriate to Lupus Awareness.

Lupus is a life long chronic illness. I’ll have good days and bad days too. But the story of how I, along with many other survivors, live and love as long as we are alive – that story is yet to be told in full.

In a few hours, I will check in at BLK Super Specialty Hospital in Karol Bagh, New Delhi. The second chapter of this cycle of Lupus Care begins under my rheumatologist and the other doctors. I am grateful we’ve come this far.

img_4297Visit the She Blossoms Facebook Page. Join weekly Twitter chats on #AskaboutLupus. Join our Lupus Support Community. Volunteer with She Blossoms (write in to askaboutlupuske@gmail.com).