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.

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.

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?!

Switched On – #Lupus Diaries 

I’ve had a melancholic few days. It’s probably a wind down from a weekend full of activities. My family had a fundraiser to try and add to what we’ve got so I can go back to India and hopefully finish my treatment. A bunch of my friends came through as well. There was just the right dose of family drama, too.

I stayed on adrenaline high because the night before and the night after my friends slept over, and the Sunday after the fundraiser saw me join them at a garden party not far from where we live. That means I was ‘switched on’ for nearly 48 hours! I zonked out on Monday, and only woke up to accompany mum on post fundraiser errands. I was so exhausted I just slept the whole way to and back.

Then Tuesday woke me up with red all over. Because I have Sjorgrens, nosebleeds are not entirely surprising. When the nasal mucous membranes dry out, cracks form and the tiny blood vessels can start to break. Usually, I see a speck of blood when I try to blow my nose. But this was full on steady stream bleeding. 

Nosebleeds can be scary. But usually they are not serious as long as you can stop them and they don’t happen a lot. Why is it a concern for me? Because I just completed a cycle of Chemotherapy, which although lupus chemotherapy is mild, causes some damage to blood cells and can result in anemia and jaundice.

I had my liver enzyme test 2 weeks ago and levels were off. If I wasn’t at the end of my cycle, the doctor would have discontinued the treatment. Since I was at the end, my instructions are to rest, eat well, exercise moderately and take my folic acid. Folic acid helps protect and repair cells – simple version of the explanation.

Since this cycle of Lupus therapy started, I’ve seen some changes, less pain, less brain fog and so on. I keep remembering what my doctor said, that Lupus is a lifelong illness and care is a lifelong endevour, so I don’t expect Lupus to go away right now. 

There are so many other aspects of my care that couldn’t be addressed initially because controlling Lupus was the first concern. I suspect they my heart is still malfunctioning. I still have Cushingoid features, as well as PCOS syndrome, both of which would wreck havoc on your life even without further complications.

I think I’m learning to live with uncertainties. I can’t say I’m not anxious. I definitely am. I worry about money, my mum, my dog, my people…. I worry. I worry because I’m not the carefree little girl who loved to travel anymore. I hate traveling. I hate airports. I hate the compressed air in planes. I hate flights. I hate customs and immigration officials. I hate feeling so sick I can’t appreciate or negotiate the beauty of a new country. I’m learning to live with them, but I worry.

I’m not sure if the worry precipitated the nosebleeds, or simply aggravated them. So I’m here offloading before I head off to go find my zen.

If everything goes according to plan, this time next week I’ll probably be back in New Delhi, India. The plan is to retest, see how much progress I’ve made. Then we’ll draw up a battle plan. This time we might include a few of the secondary issues to be addressed.

I am hoping a lot of things, and I understand that I am vague in so many ways. I just hope that what I am sharing will be useful to someone who might have to go through a similar journey. I can only hope.

Until another time,

Love and Light,

J

Update July 29.09.2016 – Lupus Diaries (#OptionIndia)

The first time the option of seeking treatment in India was mentioned to me, I dismissed it as a far impossibility. But then my family (my family is my mom and two people not even related to me by blood. Or marriage.) received the scare of their lives when doctors started talking ‘cardiac event’ and ‘prognosis’ and ‘ recovery time’ and ‘potential risks’. I had checked out of the room by then.

I was barely present when visas and yellow fever cards were being sought. I vaguely remember being assessed by the doctor to determine whether or not I could get the Jab or not. I was active on social media though. This is my safe space. I look for material, craft info, share it, sit back, read up on people’s timelines, laugh at the ridiculousness of the worlds thoughts and emotions shared online while we still wait for a machine that can stream shared consciousness. I’ve always been on social media. Even when I’m strapped to a hospital bed. It’s an amazing and a sad sight to see.

This time, I’m a little less scared, and a little more in tune with the journey. I am not sure what will happen. My family is at the point of selling what’s sellable. I feel a little guilty for putting my mother in this position again. The online fundraiser is still on, although Mchanga did switcheroo the url without informing users. Here’s the link. You can still donate via Mpesa Paybill 891300 Account JMARURU. This weekend my family will hold an ittybitty fundraiser at home. I hope it helps because this time round I hope to get through whatever treatment option my doctor recommends for a longer lasting remission.

Speaking of treatment, this week, I’ll finally complete 9 weeks of chemo. I’m also on standard Lupus medication and migraine medication, which I must say has been working really well, reduced pain levels and all. I can’t imagine going back to pain, fever and disruption. That thought scares me.

Fortunately, I don’t have to think about it just yet.  Of course, I’m hoping the online fundraiser will keep growing. In the last few weeks I have seen so much kindness. For example, Peter Elungat donated his beautiful painting titled The Untold Story to my fundraiser. It is a 120×90 Oil on Canvas.

The Untold Story ( 120×90 -Oil on Canvas)

Shortly after, Ndeithi Kariuki donated his painting, Jazz 3 to my fundraiser. It is 50×30 – Acrylic on Canvas.

Jazz 3

Jazz 3 (50×30- Acrylic on Canvas)

 

For purchase and/or information about the paintings, please contact Elizabeth Maruru on 0722580936.

Little Note: 10% of sale of both paintings, and any funds left over after my medical care, will be donated to Lupus Awareness under the She Blossoms Lupus Trust.

Chemotherapy – Is Lupus a Form of Cancer?!

I’ve decided to share this thread which I first shared on my Twitter timeline here because it seems like it is indeed a serious question.

When mum and I were in New Delhi, the night after my doctor said I’d have to start on a course of chemo, mum called my aunts back home and explained some of it to them, with my consent of course. My aunts were a little shocked. Later, one of my aunties admitted that she felt a little despair, ‘Our little girl went to India with a complex case of Lupus and now she has cancer?!’

Yes, I am still considered a little girl. And no, I do not have cancer. So, why the chemo? The question was echoed by a concerned lupus supporter whose friend has Lupus. She sent me a series of DMs trying to understand Lupus, but one question sort of stood so I asked her to allow me to answer it in a public space which I did on my Twitter timeline.

Q: You said last week that you will be going through chemotherapy for your Lupus? Does that mean Lupus is a form of Cancer? #AskaQuestion

A: No, Lupus is not a form of Cancer.

-Dr. Irene Blanco: “There’s a misconception that lupus is cancer because it deals with the immune system and abnormal cells.” While the same or similar chemotherapy drugs can be used to treat both cancer and lupus, the two conditions are NOT related.

-To understand why doctors would use Cancer-fighting drugs to control Lupus, you have to understand how Lupus works. I recommend this excellent little video which breaks down how #Lupus works from the cell outwards.

-But for now, simplest explanation is: Lupus is an autoimmune disease. Your body’s immune system turns against its own cells. Therefore, in managing #Lupus, a doctor’s goal is to reduce the activity of your immune system in your body.

-One of the side effects of cancer-fighting drugs is that they weaken the immune system. This side effect is the object of Lupus management.

-Doctors prescribe cancer-fighting drugs for #Lupus because they have few options to slow down an immune system gone haywire.

-In severe cases of #Lupus, doctors may use chemotherapy drugs more in line with how they are used in fighting cancer. In other cases, they will use much lower doses of the same drugs in pill form. The goal being to lower the activity of the immune system.

-In my case, I am on a combination of an injectable chemo drug, standard #Lupus meds in pill form & prescription supplements.

-I always say this, and I’ll say it again. #Lupus affects every single person differently. So MY treatment program will work, or not, for ME.

Some information on this article was sourced from healthline.com.

A Note for Well-Wishers: My Medical Bills Fundraiser is Still Live at MCHANGA. You can donate via Mpesa, PayPal or Credit Card.