Goals

My last post hinted that I’ve come to some kind of acceptance and contentment about my situation living with Lupus. This is not to say that because of my life with Lupus I no longer have goals, dreams, ideas… It might take me a little longer, and I might need a whole lot of help to actualise most of them, but I do have them.

I am rewatching this show Rosewood, about a Miami Medical Examiner who teams up with a Detective to solve crimes.

The Medical Examiner sort of represents the kind of health challenges that seem like unbeatable obstacles, a failing heart, compromised lungs, weak kidneys etc because of being born a preemie and a lifetime of a body that fails and betrays you. How do you survive this?

The Detective represents the kind of emotional worries that would leave a person psychologically crippled. After being abandoned by her father, this detective works hard to be a cop, finds a person she believes is the love of her life then one day he just drops dead. How do you survive this?

I’m still rewatching the parts where the ME and the detective are getting to know one another. It sounds a lot like my brain fighting with my heart (not the physical one, the other one for feeling).

The ME, despite his physical challenges, wakes up every morning, runs on the beach and tries to enjoy the sunrise. His body often kicks his ass. Pulmonary hypertension causes tinnitus and muscle cramps. But he doesn’t let it faze him. He is stubborn though. Although he does eventually hook up with a cardiologist (quite literally), at first he insists on treating himself, running diagnostics and self prescribing which is so bad on so many levels.

Lady Detective has about the same problems except on an emotional level. Eventually, her anger management problems send her to rehab which turns out to be a disaster, but the kinks finally work themselves out. She attempts to date someone, but eventually he leaves her for a Doctors without Borders job in Kenya.

You get my drift. Things go wrong. The things you expect to go wrong go wrong. The things you hope will work out will go wrong. But that isn’t to say some things won’t work out. Some things will be amazing!

When Doc’s mother puts him on the spot when he removes himself off the transplant list because he feels it will be a waste of a heart that will probably be rejected by his body because of his peculiar circumstances, Doc says something to the effect of: You work with what you have, mum. You do your best, minimise the risks, enjoy the blessings and what will be will be.

Lady Detective gets somewhat similar advice about her emotional state.

I can vaguely recall what happens ahead on the show, so I’m not going to pretend that Rosewood is this great artistic metaphor for life. Its just the reason I pushed myself to do some stretches today even though it hurt like hell, and I hope to work towards getting my strength back after a particularly bad Lupus flare. That’s the goal I’m working towards right now.

Goals: Jessamyn Stanley

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I was a moody teen who thought she knew everything. I wanted to be done with school already and if I’d gotten my way I would have quit school at 15, done my American Fitness exams and become an aerobics  instructor. My mum was that ninja mum you found yourself obeying because I stayed in school long enough to sit my KCSE and then sit IGCSE A levels.

If things had worked out my mum’s way, I would have enrolled in a university degree immediately after my As because by then I had turned 18. But things dragged out and the money didn’t come through, so I missed both my enrollment at a US University as my mum hoped and then later at the Kenyan University that gave me a place.

Looking back now, I realise that though I missed out on the formal education I became so desperate for after that initial teen angst, I did end up getting a good enough education that I can be proud of.

I studied for 3 diplomas, one in early childhood education, one in creative writing and another in publishing. I have worked as a teacher, educator, writer, ghost writer, editor. I’ve worked in marketing, social media marketing, and content management. I’ve worked in resource management and personnel training.

My life has allowed me to go where I’ve wanted and put me in situations I wasn’t quite prepared for but surprisingly those situations became just what I needed either as lessons or as new directions.

The one thing that has been ‘the thing’ of my life has been having to live with Lupus. Lupus in unpredictable, debilitating, devastating and a completely life changing autoimmune and chronic illness.

Lupus changed the way I live my life, the way I work, the way I love. I am limited in so many ways. I go through long periods when I am housebound because of pain or because of low immunity. Even when I can go out, I must be accompanied, and often I can’t really do much because I suffer from severe UV sickness.

As a result of my Lupus circumstances, I have had to modify my work situation so I can work, teach and live at home. It works for the most part. But it can get awfully lonely. Lonely, not because I don’t have contact, but because sometimes it feels like no one quite understands the Lupus life.

Persons living with Lupus are called Warriors. I’m not very sure why it happens but people get so used to us being brave and strong and smiley in spite of illness, that if our smiles falter questions arise. And yet, our being brave and strong and smiley, was supposed to be ‘in spite’.

This expectation to be brave and strong all the time can be lonely. You don’t want to be a complainer. And yet sometimes you need a listening ear, someone you can vent to, who will not judge you for being whiney and weak for a moment.

The other thing that can make the Lupus life lonely is if you chose to be an awareness advocate in which case you have to be publicly sick. Sharing your journey on social media  platforms, makes people feel like they are there for you if they just post a few words of encouragement. Friends love you online and never come to see you in real life. Besides, you get sick so often, you can hardly ever go out with friends, so they just love you online.

This is where I am. It is a far cry from where I thought I would be when I was 15. I thought by now I’d be a superfit retired fitness instructor turned best selling novelist. I’d have 16 titles  and half of them would be International Best Sellers. I’d own a house on the beach, an amazing v-8 jeep for off road adventures, and a custom built Mammot Road Bike.

Wow!

Instead, what I am is a 35 year old writer & editor living with Lupus and surprisingly content with my lot in life.

Loving Someone who Lives with Lupus – #LupusLife 

A few weeks ago, Fred asked me, ‘How easy is it to be your friend?’ I laughed and told him, ‘You tell me.’

Being a friend to someone living with #Lupus has got to be the most frustrating situation ever. You have to expect canceled plans because of sudden illness. You have to expect sudden illness when you are up and about probably having fun. You have to know what your friend suffers from, what meds they take, how to react if they get I’ll suddenly. You are not just a partner for fun times, you are a support system and sometimes a care giver. That is such a burden to carry!

A few years ago, I was part of a merry band that I considered my friends. When Lupus reared its head, I went through the usual motions of a Lupus flare. You wish it away. You feel guilt and shame. You try to push through it. And then you fail and collapse. Then you get up and try again. I struggled to stay afloat. Sadly, my merry band did not have the capacity to comprehend what had assailed me.

We went through fights because of canceled appointments, to accusations of being a hypochondriac, lazy, suffering from Münchhausen by Google, and so on. When I am in pain I am not the best communicator. I either shut down or explode in acidic words. That didn’t help much. So in the end, I lost my merry band of not so real friends. Or rather, I cut them off to end the reign of negative energy.

Fast forward 3/4 years and I’ve had the beautiful chance to experience the exact opposite of that situation.

Loving someone who lives with Lupus means that you empathise with their pain, you worry about their prognosis, you become as much of a warrior as they are.

In the last few months, I’ve watched my friends quietly organise and reorganise plans so that I am not exposed to direct sunlight, so I don’t have to walk too far, so I have water, meals on time so I can take my meds on time too. They understand why I am safer with companion in the event I have a seizure, why getting into a matatu is about as dangerous to me as coming into contact with vials of live viruses for a person with a healthy immune system. These little complications and inconveniences…

The truest of my friends know that in itself Lupus is part of my identity now, and that the illness doesn’t make me less of a person, only more; more ambitious, more determined, more resilient, more hopeful…

Living with Lupus has made me accept one fact. There are not very many people who are willing to take on the role of friend to a person living with Lupus. It is a tough job. It is an incredibly tough job. I would not fault anyone for choosing to walk away. 

And I am so incredibly in awe of those who choose to stay.

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#LupusLife #LupusAwareness

Because Lupus adds Spice to my Life

“Lupus changes People. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately.”

When we sat down to plan the year at She Blossoms, we decided that 2017 was the year of Hope, so all our events are Hope events. But a secondary theme for this coming Sunday’s concert is ‘Lupies are People’.

It is probably something you have not thought much about. When you hear of cancer, diabetes, heart disease, Lupus, you don’t think of it in terms of people unless and until it touches someone in your family, someone you love, You. Then it stops being some scary monster that lives on the street that you have to evade but have never faced.

Now the thing with Lupus is that in most people, diagnosis doesn’t spell terminal illness. With care and management, most people living with Lupus can live long lives. However, living long lives doesn’t mean that they do not suffer the effects of the fact that they have an autoimmune disease, that basically, they’ve got a part of themselves hellbent on waging war on their bodies.

A person living with lupus will always have to avoid sunlight and UV ray emitting light sources. They will have to use sunscreen, umbrellas and hats. A person living with Lupus will have to avoid certain foods that overstimulate the immune system. Also, as long as they are on medication, a person living with Lupus will have to avoid exposure to possible infection sources. They would have to avoid exhausting themselves, excessive stress, overindulgence in alcohol as all these can trigger Lupus flares. They would have to have several medical examinations and laboratory tests a year in order to monitor their state and catch changes as neglected flares can result in severe illness and or organ failure.

Now, to cope with all of this, and yet continue living life, loving friends and family, working at a career, that is the challenge. Being sick is easy compared to the challenge of living life.

I am awed at Lupies who embrace life with everything they have; raising families, working hard, at life and play, in spite of the storms they have to weather because of Lupus. These are the people I want to celebrate.

Moms. Dads. Awesome Daughters and Sons. Wives. Husbands. Girlfriends. Boyfriends. Doctors. Artists. Writers. Accountants. Lawyers. Administrators. Business Persons. I have met so many and they don’t seem to think that Lupus should stop them from being the best.

I observed the other day, that in spite of the sentence we all receive on the day we are diagnosed, that Lupus is a lifelong chronic illness, many of the people I know who live with Lupus do not consider themselves sick unless they are on a hospital bed hooked up to an IV. Everything else is normal Lupus Life. In fact, it would usually take a lot of pain and discomfort, possibly a near death situation for a Lupies to go to hospital. The doctors scold us, but its the truth.

Someone commented that all the Lupies he has ever met are always smiling like they are having a good time. He was saying this to me while I was hooked up to a bag of antibiotic IV. I think he was more than a little miffed when he asked: What is it? What makes you so happy? Why?

I wanted to garner some higher level response but I was too drugged up, so I said.

Because Lupus adds spice to my life.

I hope you will come through this weekend, because you will get to meet and hear from a few people Living with Lupus. You’ll get to hear from them how Lupus has changed them, made them stronger, made them better.

Advance tickets will be available till Friday 5pm via Mpesa 0725758389. Tickets will cost 500/- at the door.

She Blossoms for Lupus – A Concert for Hope will be held at Shalom House, Daniel Comboni Rd, Off Dagoretti Karen Road on Sunday 5th March at 3pm to 7pm.

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The concert is curated by Lahani’s Kibali Muriithi and sponsored by All for Cars International.

See you there!

I’m Accepting Gifts! Done with #LupusChemo – The Lupus Life

Yes, I’m done with a six month journey with #LupusChemo.

I still don’t know what this means. My immediate future holds a lot of medical review in the form of lab tests and examinations, which means I’m heading back to India.

The last time I did my blood tests here in Nairobi, only a month ago, most of my levels showed reason for hope. There has been some concern with my erythro-sedimentation rates and some protein in my urine which could be as a result of the chemo or not. The doctor’s recommendations are to not panic at this moment.

I’m looking at my future with hope, whatever it does bring to me.

I went back to work in December. I did make a promise that I was going to go back to working as a literacy advocate. I got to work on a campaign to raise funds for a Library under the Start a Library program.

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As of January 2017, I am working on the Storymoja Festival team as the Communications Liaison. I am very excited about being part of the team growing the program for the 2017 Storymoja Festival which will be on 27th September to 1st October. The theme for this year is ‘Black Peace’, which I see having so many possibilities.

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I’m also so happy to be part of the She Blossoms Lupus Awareness programs. We inducted the 2017 Volunteers which involved several rounds of training, which was both enjoyable and exhausting for me. I’m happy with the new team!

Our first event of the year; She Blossoms for Lupus, will be this weekend, on March 5th 2017 at Shalom House Gardens. It is a Concert of Hope, curated by Lahani’s Kibali Muriithi. Performing at the event will be Jemedari, Ach13ng, Serro, Ayrosh and Kibali. I hope to see you there!

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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.