May is World Lupus Awareness Month

 

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 πŸ™‚

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.

It 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, Β started physiotherapy, which was hell at first, pushed myself into a regular exercise routine, made the decision to be consciously optimistic.

In 2016, I traveled to India where I underwent rigorous testing to see what I was dealing with. Finally, I was diagnosed with Undifferentiated Connective Tissue Disease.

It hasn’t been easy keeping up with my symptoms, the different medications, doctors’ appointments, numerous blood and imaging tests that have to be repeated often to monitor the disease, side effects from medication and often opportunistic illnesses that develop as a result of being immunocompromised.

I have to live in this autoimmune world. But I’ve made a decision to live on my terms. Nothing will come between me and the beauty of life and love.

One of the things that make it possible for me to keep going, is the commitment and determination to raise awareness of Lupus and the challenges that people living with autoimmune disease have to face everyday.

This is why the month of May is so important to me. It is the one time I can join the rest of the world in increasing awareness about Lupus. I have been doing this with the support of friends, loved ones and the Sheblossoms community.

World Lupus Day falls on May 10 of every year. World Lupus Day serves to rally lupus organizations and people affected by the disease around the world for a common purpose of securing greater attention and resources to end the suffering caused by this disabling and potentially fatal autoimmune disease.

In 2020, the spread of the Corona Virus pandemic throughout the world means we cannot do World Lupus Day as we have before. Traditionally, Sheblossoms has organised a live Lupus Awareness concert along with other talks, presentations and meetings during the month.

Sheblossoms is, however, organising an online event that you can watch or access from the appropriate safety of your space. Keep an eye here and on Facebook and Twitter. for details on the World Lupus Day events.

If you have a story to share with the Kenyan Lupus community, as Lupus patient or caregiver, please feel free to drop me a line in the comments or on the social media pages above. If you would like to join the WhatsApp support group. I will be happy to connect you.

I can’t wait for May to start!

Please Stay Safe. Wash Your hands. Don’t touch your face. Wear your mask. Wash your hands. Stay Appropriately Distant. Wash your hands! Stay COVID19 free!

All I Want is to Survive #COVID19

 

 

Help Tasha Go Home!

This is a personal appeal to friends of this blog and anyone who stops by here. I am asking that we support this amazing fighter and #LupusWarrior, Natasha KiokoΒ  in any way possible. Nothing will be too little.

Natasha with her dad, Ricky Kioko

Following difficult negotiations with the insurance provider, Tasha and her family have been left with a KES 2.5m bill to pay to the Nairobi Hospital.

She’s been undergoing dialysis due to Lupus related Kidney failure, but recently developed severe headaches which turned out to be due to a clot in the brain. An emergency surgery was conducted & thus the bill. Let’s assist Tasha and her family cover the bill so she can go home where she will be safer with this #COVID19 situation.

Send what you can to her dad Ricky Kioko’s Mpesa at 0715179386.

The best we can do during tough times, is to support and protect each other until we can get through it!

Thank you so much!

Juliet Maruru.

For Me, a COVID19 Infection is a Death Sentence

I must admit to feeling a sliver of fear. No, I am not afraid of death. However, the process of dying worries me.

Last year about this time, my mum and I contracted a winter flu while we were in New Delhi. When the test results finally came in we were informed that we had contracted a weaker version of H1N1. It was horrid. It was made worse by my autoimmune struggles.

I imagine that COVID19 is a lot worse, at least judging from the descriptions those infected are giving. I imagine being afflicted, having difficulty breathing, being in pain and … the fever. I hate fevers. Flu fevers are just the worst.

So yeah, I am just a little scared. Which is why I’m being extra cautious. I want to minimise the chances that I will contract COVID19. I want to make sure that the people I care about don’t have to live through (or die from) a COVID19 infection.

Wash hands diligently and regularly.
Clean and sanitise surfaces in the home.
Avoid unnecessary contact with people.
If you think you might be infected, please isolate yourself and minimise the chances that you will infect someone else.

If you need to be convinced further on why you should do everything to avoid infecting others, have a look at this article. πŸ‘‰ They’re living with an invisible illness. Social distancing will save their lives.

Optimism…

A few years ago, I committed to sharing my experiences living with Lupus in order to raise #LupusAwareness.

I’ve told my story here: From being told that it was all in my head, being referred to psychiatrists, being told I had chronic fatigue or myalgic encephalomyelitis, then being told it was fibromyalgia, to finally being told I had UCTD, which is a cool way to say: We are not sure yet which autoimmune disease you have because your markers are not complete, but it looks like Lupus, walks like Myositis and quacks like Scleroderma.

I’ve talked about my symptoms, the ups and downs of living with what is generally treated as Lupus by my doctors, looking for clearer diagnoses, and just surviving a disease that batters me physically, emotionally and financially. I can’t even begin to describe how draining this is for the people who love and care for me.

I’ve been admitted into hospital 5 times in the last 6 months. It is exhausting, expensive, and often quite frustrating. As I write this, I am in hospital all over again.

I am struggling to remain optimistic and cheerful. The humor doesn’t show up quickly at the moment. I can only hope that in a few weeks time, it will come back to me so I can continue being some kind of lighthouse for those negotiating the dark and turbulent seas of living with chronic illness.

Until then, I wish you all strength, courage, hope and love.

Juliet

Needle Day… or trigger fear & panic day

I’veΒ  mentioned medical PTSD here before. It is different for everyone and can show up as irrational fear and anxiety during medical procedures to nightmares and depression. (See about πŸ‘‰ Medical PTSD )

I get easily triggered by the sight of hypodermic needles. Chronic pain, night sweats, random nausea, fevers and whatever Lupus throws my way won’t faze me. But the needles for drawing blood or for injections / infusions will make me consider lying down on the floor and sobbing like a 2 year old whose mummy said no to supermarket sweets. I’ll sweat, experience a racing heartbeat and sometimes I disappear into a panic attack, hyperventilating uncontrollably.

Usually, when my body is behaving properly, I only have to see my doctor once a month. The week before my rheumatologist’s appointment, I’ll be at the labs getting blood drawn for monthly tests. And this is where I consider giving up.

My veins are difficult. It’s not that they can’t be found. No, it’s that they absolutely refuse to be pricked. So before the medics can find one that will cooperate, I’ll have been pricked several times. It usually takes half an hour to 90 minutes to fix a line.

The worst that ever was was when I was hospitalised a few weeks ago. It took 5 different medics and finally an anesthesiologist to fix a line. My medication was delayed for 6 hours because of this. By the time the anesthesiologist finally fixed the line, tears, snot and sweat were running down my face. I was exhausted and angry with no one in particular.

The next day, I felt like I’d been run down by a 26 wheeler. I had the bruises to show for it.

Anyway, in case you are wondering what I will be up to for the rest of the week: bring me supermarket sweets.

But please, feel free to have a good day!

#ThisIsLupus

Have We Been Here Too Long?

The doctor’s new office assistant looks flustered. She is juggling making appointments, pulling out patients’ files, with a myriad other office things she has to do. There’s usually two of them keeping everything going in this busy Rheumatology clinic. The other assistant, who has worked here longer, must have the day off.

The waiting room is the average Nairobi specialist doctor’s waiting room, that fits the assistants’ semi-circle table on one side and about 14 seats for waiting patients on the other. The seats are the nice kind, soft enough with decent back support. Everyone is close enough to hear what the Ms. Assistant says to whoever stops at the desk. I listen in on her shamelessly. Another waiting patient reads, and yet another stares at a wall. The rest either talk to each other or fiddle with their phones.

There’s a lull, an expansive silence that makes those who weren’t paying attention look towards the Ms. Assistant’s desk. A woman has walked in, bringing with her a warm flowery fragrance. She looks elegant, in her long maxi dress which features flowers of varying hues of red. Maybe it’s my synesthesia making me imagine that she carries a scent with flowery notes.

I watch her dig into her Queen Elizabeth handbag and bring out her phone. Then she asks for an appointment sometime next week. Wednesday, the 22nd, at10am. The Ms. New Assistant nods and turns to type on her computer.

“The doctor has lectures on Wednesday morning.”

Someone has forgotten to use their innie voice. I sigh with relief that it wasn’t me this time. We are all looking at Mr. Stares-at-the-wall now. He smiles with a bit of embarrassment.

“What?” That’s the lost Ms. New Assistant’s voice as she scrambles for notes that she must have been given by the other assistant. She finds the right post-it where it was hiding on the edge of her computer screen. She sighs with a bit of shame, “Yeah, on Wednesday the doctor won’t be in until 3PM.”

Ms. Flowers doesn’t look happy. She looks at her phone then asks, “Thursday? But I can only see him at 9am.”

“He usually has hospital rounds till 10am.” This time it’s a lady whose been talking to her friend in hushed tones the entire hour we’ve been waiting. Multitasker? She definitely was listening in.

“Yeah, that’s true.” That’s all the Ms. New Assistant can say for herself. This time, Ms. Flowers doesn’t bother looking at the her. She asks the waiting room, “What about Friday?”

“After 10am.” That is a unison of voices. Ms. Flowers nods, and goes back to her phone. She manages to work out her schedule and gets her appointment. We exchange knowing looks. No one will tell her that it will be first in first served when she comes in on Tuesday after 10am.

More importantly, no one talked about how sad it is for anyone to have spent so much time in a doctor’s office or hospital that they knew the doctor’s schedule by heart.