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.

 

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).

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.