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

35

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.

May is World Lupus Awareness Month

I originally wrote this note in May 2016. A lot has changed since then, most notably my diagnosis, prognosis and my work with She Blossoms.

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.

The last one year 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.

I have to live with Lupus. But I’ve made a decision to live with it on my terms. My terms are simple. Nothing will come between me and the beauty of life and love.

So what is Lupus?
Lupus Facts:

1: Lupus is an autoimmune disease. Your body’s immune system attacks cells, tissue and organs as if they are a virus, bacteria or foreign body. Please see the list of symptoms here. There are about 200,000 cases of Lupus in Kenya. Many might be going undiagnosed.

2: It takes several doctors visits and more than a few tests to get a Lupus diagnosis. Lupus is the great imitator of other illnesses. Those must first be ruled out to finally get a Lupus diagnosis. There is no single blood test to diagnose Lupus. A doctor must assess your symptoms and run several blood tests.

3: Although you might need to see other doctors, a rheumatologist is best suited to help you diagnose and manage Lupus. There are only 8 rheumatologists in Kenya, as of last fact check on April 23, 2016.

4: People living with Lupus experience periods of disease intensity (flares) and disease inactivity (remission). During disease intensity, the cost of medical care exceeds KES 1 million on lower end and can rise up to KES 8 million and above per annum.

5: Insurance companies shy away from insuring lupus patients or charge very high premiums because of high risk factor.

6: Many Lupus patients suffer much more severe illnesses and episodes because they delay getting treatment until they have the cash.

7: Dealing with Lupus is trying to understand the complexity & mystery of Lupus, & trying to keep up with that paradox.

8: 3 broad categories –

Discoid – Chronic Cutaneous Lupus Erymathotus

Systemic Lupus Erymathotus (SLE)

Drug induced Systemic Lupus

9: No two cases of Lupus are similar, even when they fall under the same category.

10: It often helps to meet with and talk to other people going through the Lupus journey. The Lupus Foundation of Kenya runs a support group that brings patients together, and organizes a resource program for finding doctors who understand Lupus. I have found strength and support and I hope that I have provided support in some way to others who need it through this group.

The Lupus Foundation of Kenya will hold an event dubbed The Butterfly Effect on 6th of May 2017 to observe World Lupus Day as well as provide an opportunity for a meet and greet for members, supporters and friends. It should be an awesome learning opportunity for all. YOU are invited!

The entire month of May is going to be a month of activity for She Blossoms, the channel I’ve chosen to use for my health activism. Along with my team of She Blossoms volunteers and my partners in crime, Anne Eboso of All4Cars International and Kibali Muriithi of Lahani, we are working on a calendar of events which will be announced on Sheblossoms.co.ke.

 

‘As Received’. Can We Do Better?

Are we a nation of blind and irresponsible ‘forwards’ or can we do better?

With Facebook & Twitter, and now WhatsApp Groups, this horrible trend of sharing information that comes to us without verifying the source or the veracity of the information has increased exponentially.  We end the forward with ‘As received’, as if that absolves us of any responsibility. Does it?

Ridiculous rumours, harmful gossip, personal information, fake news, and just plain stupid lies get peddled around in forwards that don’t see an end. ‘Type Amen’.

But perhaps the most harmful of these, are well intentioned posts about cancer, developmental disorders and mental health issues that are pushed around and then people are asked to share on their status as ‘awareness’.

In the last few months, one such post attempts to shame a person who is considering suicide. The post talks about the possible effect of this person’s suicide on everyone else in their life, including that bully, and the teacher who was hard on him. In essence, the post tells the depressed person that ‘Suicide is Selfish’.

I suppose there may be several versions of this post. The bottom line of it is that it never once addresses the depressed person’s pain, but instead attempts to shame them into not committing suicide.

One thing is absolutely obvious, the person who wrote it has NO understanding of depression or suicide. They have no comprehension of mental illness, otherwise, they would not attempt to use such a triggering piece of prose to ‘raise awareness’ or ‘stop suicide’.

I tried to find the words to deal with the shaming part of the ‘Suicide is Selfish’ post, but I think Chris Lyimo’s words are a lot more organised than my thoughts.

I’m concerned about that suicide awareness post doing the rounds in this FB hood.

If a suicidal person was to read that post, I can promise you, it would just drive them deeper into the depression (a mental health, and not a moral, issue), make them feel more guilty and ashamed of the impact that their miserable state may have on everyone else. The irrationality that accompanies depression would just hasten the suicide route.

They don’t want to end their lives; it’s the pain, people. It’s the pain that they can’t stand.

They have gone beyond the instinct of self-preservation.

Help them!

#Suicideisnotachoice
#healingispossible

~ Chris Lyimo

Anyone who shares the ‘Suicide is Selfiah’ displays the same amount of ignorance, or callousness as the person who wrote it.

I call it callousness because basic common sense could tell you that a person crippled with depression needs compassion and support, not shaming and more bullying.

I just saw a person on a conversation discussing this type of post say that she shared the post for ‘dialogue’. This absolves her of responsibility for any harm the post might cause because she shared the post to start up a conversation on depression and suicide. Really?

In what universe, does it make sense to use harmful material to do good?

This brings me back to all those pieces of fake news, rumours, graphic videos etcetera that we share ‘as received’ without verifying, and then imagine that we do not have any responsibility when those posts cause harm.

Why would you share something that could potentially hurt someone who you count as a friend, just so other friends can ‘dialogue’ about it? What makes you think you have no ethical responsibility with regards to information you forward ‘as received’, if it will reach an audience who will react solely on that piece of information, with positive or negative results?

We are in an election year, so I can only expect more of these. Propaganda, fake news designed to propagate ideology, fan tribal hate, generate physical violence… Do you really think you will escape responsibility because you did not design the material and simply forwarded it ‘As Received’?

There might not be any consequences directed at you for sharing ‘as received’, but there will definitely be consequences somewhere along the line. Who is responsible?

Are we a nation of irresponsible forwarders, or can we do better? Do we have ethical and moral responsibility with regards to the information we share on our social media accounts?

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.

This slideshow requires JavaScript.

#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.

img-20170228-wa0002

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.

cover

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.

fb-cover-design-template-06

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!

march-5-facebook-cover