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.

I Come With a Disclaimer – Lupus Diaries

The title of this article is courtesy of friend who called after a long while and managed to bring me more than a week’s share of laughter, and along the way managed to get me to talk about my symptoms without feeling ashamed of them.

My toenails have been falling off. I’m going through Lupus chemotherapy so this is expected. No, it is not! I expected hair falling off, I expected fingernails getting darker. What I did not expect is my toenail just freaking falling off! 

My friend, who is something of a geeky nerd asked, ‘So how in the world do you explain this during sex?’

I’m not sure which is funnier, the unlikeliness of that scenario seeing uhm well, the blossoming cactus is growing in the desert, or that the issue of toenails would actually come up during intimacy. Unless, of course,  a foot fetish was involved.

In all seriousness, though, I expect that I will always have to explain one thing or the other related to the fact that I have Lupus – 4 other autoimmune disorders.

There’s no way my friend was going to let this go without pulling out the pun: ‘I come with a disclaimer.’

It is such a reality for many people living with autoimmune disorders. Chronic illness will often test your relationships – romantic, marriage, parent-child, work relationships, friendships. Which is why for the last few weeks we prepared to have the @SheBlossoms Twitter #AskAboutLupus chat topic titled Chronic Illness & Its Impact On Relationships.

#AskAboutLupus


What did the chat reveal?

You have to decide how much you will reveal to people you interact with, to people who you are subordinate to, to people you are intimate with, to people whose lives, finances and so on are impacted by your well-being.

There are emotional and ethical implications as well. Many people people living autoimmune disease often have to face mental health issues which can impact their partners – romantic or business. 

Certain chronic conditions can be passed on hereditarily. A person must decide if they will procreate or not. This can be a difficult decision if your partner wants children and you have made the decision not to have children.

In societies where extended family have a strong influence on a couple’s choices, family interference can cause strain if a person’s chronic illness means lower income, no children, etc etc.

My personal challenge has been feeling guilty for not being able to do ‘enough’. 

I am not quite sure what enough is. I keep feeling that I need to do more. For She Blossoms the little Organisation that just now bloomed. To do more chores in the house. To do more to earn more income to support myself and not have to ask for help. To do more. It’s quite possible that if I don’t watch myself, I’d run myself into the ground. Literally.

A few days ago, a friend of mine said something that hurt me deeply, but it made me reexamine myself. At a time when I was incredibly ill, barely able to hold my own, she had expected me to do something for her and felt that I had failed her. In truth, I had no idea what she needed for me, and even if I’d known, I probably wouldn’t have been able to do much to help her. But that’s far from the point.

The point is, I barely understand the chronic disorders I live with. I learn a new thing about Lupus every day. It is more than unfair of me to expect my friends to understand exactly how Lupus or any of the other autoimmune disorders I live with affects me. I can try to explain some things, and hope that they care enough to do some research, but that’s about all of it.

I’m ever more committed to spreading awareness about Lupus. Which is why for the past 7 week I’ve been hosting the #AskaboutLupus Chat on Twitter under the handle @Sheblossoms. In a few weeks, the chat will be handed over to the Twitter handle @AskaboutLupusKe

In the meantime, I am occupied with trying to complete my treatment so I can hopefully go into Lupus remission. I am currently undergoing Lupus chemotherapy as well taking medication to manage Sjorgrens, scleroderma, Raynauds Syndrome and Fibromyalgia.

Unfortunately, because I had to resume the use of immunosuppressants, I am once again suffering from Cushing’s syndrome and Left Ventricular valve dysfunction (cardiac). It will always be an issue I suppose because I am very prone to both syndromes. So once again I’m fighting to keep the cushingoid weigh off which isn’t easy when I’m dealing with chemo. Interestingly, the particular chemo I’m going through doesn’t usually cause weight loss. It cause hypoglycemia, and slows the metabolism. 

That’s that about my treatment. Here’s a little about my fundraiser.

The online fundraiser for my medical bills is still on, and at 24% of the goal. You can add to it via MPesa Paybill 891300 Account JMARURU. If you are abroad or for whatever reason wish to pay via Simbapay or Paypal, you can do so on the page here. Any amount of donation will be so very much appreciated.

A few weeks ago, I was so humbled and pleased to accept with gratitude, Peter Elungat’s donation of his beautiful painting called The Untold Story.

The Untold Story

The Untold Story


Last week, in answer to Peter Elungat’s call out to fellow artists to donate to my medical fundraiser, Ndeithi Kariuki donated his beautiful artwork titled Jazz 3.

Jazz 3

Jazz 3

 

To purchase either painting you can contact Elizabeth Maruru on 0722580936 or email julietmaruru@gmail.com.

After consultations, my family has decided that 10% of the proceeds from the sale of both paintings in addition to any funds remaining after my medical care will go towards Lupus Awareness & Patient Advocacy under She Blossoms.

We will of course wait to see how things turn out, but I am looking forward to fighting this cruel disease within my body, and as a lupus awareness advocate.

Love & Light to y’all!

Inspired Dream – Lupus Diaries

The most difficult part of my Lupus journey has been letting myself accept my vulnerability.

I love being in control. It is a lot more than being a control freak. It goes as far as avoiding feeling vulnerable in any way. It also means avoiding putting myself in a position of vulnerability. For example, I double check that I have the correct bus fare before I get into a matatu. If I’m meeting someone at a restaurant, even for a date, I’ll only order what I’m sure I can pay for. It can be exhausting!

When my illness started escalating, it became more and more necessary for me to let other people support and take care of me. You have no idea how terrifying this has been for me.

The problem with letting yourself need someone is that they can back off and leave you hanging off a ledge. It’s a risk you have to take. Chances are they won’t. Chances are they will.

The rewards out of letting yourself feel vulnerable, and accept the love and support of your family and friends is immeasurable. The sense of belonging interchanged, bolsters a network of family and support for not just yourself but others too who need it. For me, and my little family what it’s meant is more creativity, more co-designing, more growth on a personal and community level.

Let me break it down.

On September 20 2015, I had a major cardiac event as a result of Lupus (Systemic Lupus Erymathotus). In typical Juliet Maruru fashion, I was embarrassed by my illness and asked my mother not to tell anyone outside the family. I went through months of treatment for heart disease and for Cushings Disease without letting too many people know about it. I had asked my employers for time off from work for medical reasons but that’s about it.

In January 2016, I told a friend I was feeling lonely, and having a hard time being housebound because of the Lupus Flare. So my friends started visiting more.

In February 2016, I told 4 friends that I was broke and I couldn’t cover my medical bills anymore. In March 2016, they held a fun fundraiser that included poetry, reading, music and storytelling. KES 98,000 was raised that went to cover my immediate medical bills in Kenya. It wasn’t much but it was just enough.

In April 2016, the She Blossoms movement was born, and it morphed into the #SheBlossoms Lupus Awareness campaign in May, which culminated in the POP Lupus Awareness Walk on May 20 at the Nairobi Safari Walk. I had become the somewhat informal Lupus Awareness Ambassador.

Since then, there have been 2 stream of activities going on in my life. My health care, which included the first trip to India, and a second trip planned for mid September post-chemo is the first stream. (Please see details of my online fundraiser here.)

The second and very important stream, is the Lupus Awareness Campaign. To me, and to the people round me, raising awareness about this cruel disease and helping people get an early diagnosis are very important goals. Long term goals are to lobby for government support in healthcare reforms and lupus research. But baby steps, for now. There are other periphery interests for people living with chronic illness; employment, insurance, tax relief and so on.

It started with accepting my vulnerability, and it has grown into an inspired dream.

Update: Peter Elungat, artist extraordinaire, and an amazing human being, listened to my Lupus story and made the incredible decision to donate a painting called The Untold Story to my medical bills fundraiser. (Thank you so much, Peter Elungat!)

The Untold Story

Update 2: I am humbled and honored that a second artist, Ndeithi Kariuki, has been moved to offer one of his own paintings to be added to the medical bills fundraiser.

Jazz 3


For viewing and purchase information for both paintings please contact Ms. Elizabeth Maruru on 0722580936 or email julietmaruru@gmail.com

P.S. The She Blossoms team is a very small family that would be happy to welcome new family members who have skills/resources in events organising, photo/videography, web / graphic design, accounting, social media strategy & legal strategy. Go on write to us/me at 📩julietmaruru@gmail.com 

P. S. 2 : Please share this post with anyone who might be interested in volunteering skills or resources to a Lupus Awareness Campaign. 

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.

India – Holding Out for Hope #LupusLife

After that little bounce backwards where it almost seemed like we wouldn’t make it, friends and family stepped in a big way! Mum and I arrived in New Delhi, at 1am on 27th June.

The flight was tough. Altitude and the strain of travel made me so ill that by the time we arrived it made sense to check in at the hospital immediately. In the one week we’ve been here, I’ve stopped by the emergency room 3 times, but so far we’ve managed to keep to the general plan to not get hospitalized so that finances can stretch out.

The first week has been for the most part screening, testing and more screening. Because I have major crossover between autoimmune and endocrine disorders the doctors have to be extra diligent not to mess things up.

The most unpleasant experience so far was the endoscopy and biopsy done to check on continuing gastric issues. I couldn’t quite go under because the anaesthiologist was afraid that my cushingoid neck might cause some choking. So I pretty much felt everything.

Interestingly, the double MRIs done just a day later were so much less unpleasant. But then there was no invasion.

The next part will be planning, planning and more planning. We are seriously short of cash, so the goal is to be done with this part before we ran out of cash and have to be held hostage or something. (See about my fundraiser)

I must talk about the guest house we’ve been staying at. What happens is that arrangements are made for patients and their caregivers to live in relatively cheap guest houses or hotels right next to the hospital.

BLK Super Specialty Hospital is in an area called Karol Bagh, New Delhi. Just a few meters away, we were placed at a guest house called Bajaj Home Stay. In the last few days, I’ve come to the conclusion that it might not be entirely the cheapest room, but it is the cheapest guest house with clean rooms, air conditioning and decent food. 

The first few days here I just wanted to go home. I was so sick, it was so incredibly hot, and I missed my pets. The staff and manager here have been super kind.

I got sick late Wednesday night, and the manager gave out her own car to rush me to the emergency room. The next few days were tough because my gall bladder and stomach were inflamed. The manager made me a sweet drink that I’ve been drinking everyday that’s helped to soothe when I’m burning up. And when I couldn’t think to eat, she went and made ugali, albeit with yellow maize flour, and chicken stew, which I was able to eat and which made me get some strength back. 

I’ve experienced little bits of humanity here and back home, that have made me a lot more hopeful while dealing with a disease that for the most part sucks away hope. 

Lupus is cruel. We need hope to keep going, to keep fighting. I realize that I may not find a cure in India, but even a better understanding of what I’m dealing with, is an offer of hope.

Until next time… Love and light.

The Online Fundraiser towards my Medical bills is still live. All donations will be greatly appreciated.

Just One More Little Delay – #LupusLife #OptionIndia

With no insurance, because once Lupus becomes a diagnosis, or even a suspicion, getting a new insurance cover is next to impossible, and having been forced by circumstances to let an old cover lapse, my medical care became near impossible to afford. I had, by February 2016, fully expended all my savings and resources on medical care since my Lupus crash which started in April 2015 and peaked on 21st September with a major cardiac event. I have at this time very nearly used up all of my mom’s financial reserves, too. She continues to be so strong emotionally through all this. I am thankful for that.

Which is why I so am glad that at this point, with your help, we have been able to raise the full amount BLK Super Specialty Hospital quoted for all the preliminary testing and medical management of Cushings’s Disease and Early Stage Heart Failure with Mixed Connective Tissue Disease. I am really grateful to my employer, Storymoja, and in particular Muthoni Garland for the support over the months. I am grateful to Anne Eboso and the She Blossoms team Wangari Grace, Julie Muriuki, Lucie Sedlackova, Denet Odhiambo, Ikua Kabucho, Sisa Mabhena, Faith Linyonyi, Robert Ngunu because with their help and support, as well as their efforts to Marshall your support, I have continued to receive medical care here and to raise funds for the process in India.

A few weeks ago, a well wisher promised 75% of our ticket fare, which meant that we reserved a very small part of the funds we have raised, through donations and other sources, for the flight tickets. We’ve had quite a bit of a wait for those tickets, hence what seems like one more delay every day. Unfortunately, that promise fell through yesterday for some strange reason I cannot yet comprehend right now. It is well, anyhow.

What it means is just one more little wait as my family and I, mostly my family, works to put together funds for mine and my mum’s flight tickets. As soon as that is done, I’ll be off on this medical journey that I have made you a part of. If you know of a way to assist with this, we would be eternally grateful. You can contact my mum on 0722580936. 

My experience makes me feel even more obligated to keep my promise made through She Blossoms. To help make Lupus more visible, to raise awareness of its effects, to be part of efforts to encourage early diagnosis and make available resources (insurance, reliefs, information programs) to assist Lupus patients manage their condition, and lastly to encourage Lupus research and higher standards of care within Kenya.

You can now donate to Juliet Maruru’s Medical Bills Fund on Mchanga.

For now: Love & Light to You All.

18 Years Old, A Stroke, Blood Clots in the Brain: Living with APS – Lupus Life

Hello there…

This week, I’ll be off to India to try and get medical management of Mixed Connective Tissue Disease in some kind of order. Mixed Connective Tissue Disease means I have Systemic Lupus Erymathotus, Scleroderma and Polymyositis. I’ve tried to explain this in previous posts, and I’ll probably try again.

Today on Lupus Life,though, I’d like to focus on another autoimmune syndrome that affects a percentage of people living with Lupus. I’ve invited Wendie Gikono to share her experience living with Anti Phospholipid Antibody Syndrome. Wendie also lives with Mixed Connective Tissue Disease.

“You are having a stroke.” Those were my neurologist’s words as he looked back and forth at the MRI then at me and at the MRI again.

He said that he could not believe I was standing in front of him instead of having a full-on stroke at that moment. He was looking at huge clots lodged dead-center in my brain, inoperable due to the location and size. A surgical alternative carried numerous risks including interference with my speech, movement and emotions.

There was no time to explain anything and I was admitted immediately. Imagine, if you can, being 18 years old, at the beginning of life, as it should be, then hearing such devastating words. I wanted to cry, to scream but I could do neither. I froze in time and place.

Sitting there on my hospital bed and googling a stroke and all its catastrophic effects. I had already changed my choice at the university because of lupus and now it seemed I was going to change it again. But I knew not what lay in store. I was started immediately on blood thinners, clexane to be exact and it would be injected into the fat under my stomach. That was the one time the belly fat had actually worked in my favor.

The following day, I was shown how to do it on my own and would continue to for the next 7 days, then I would switch to an oral anticoagulant known as warfarin. My second night in the hospital, I had an actual stroke. And I remember afterwards I could not bring myself to tell my friends and family that I’d had a stroke. Instead, I’d say that I have blood clots in the brain; Cerebral venous Sinus Thrombosis. Somehow that seemed better and eased my mind as I tried putting them at ease.

Fast forward and 6 days later, I was released from the hospital with a whole new set of drugs and instructions. Life changed, yet again. A curveball had been thrown and it was up to me to know how to fit it into my life.

Lupus and APS

After everything had settled down and I was getting back into a somewhat normal life rhythm, my doctor ordered some new tests. It was then that he discovered that I had Antiphospholipid Antibody Syndrome, secondary to Lupus.

APS is an autoimmune condition where the immune system mistakenly attacks some normal proteins in the blood. It causes clots to form within the arteries or veins. It causes strokes (caused by a clot in the brain), heart attacks, pulmonary embolisms (a clot in the lungs), deep vein thrombosis (a clot in the leg veins), and miscarriages among other disastrous effects.

As with other autoimmune conditions, APS has no cure but is managed through medication. Following my stroke, I was to be on warfarin for 9-12 months after which everything would be alright. But, it’s been 5 years. Further tests revealed that because of my Lupus, I had a form of APS that wasn’t subject to the ordinary timeline. And further, that I’ll be on blood thinners for the rest of my life.

Truth be told, since I was a child, I have never been a fan of vegetables; Sukuma, cabbages, kunde but ever since I had to eliminate them from my diet, by force, things took a whole new turn. The high quantity of vitamin K contained in these veggies interferes with the working of the anti-coagulant warfarin. So I had to eliminate vegetables, cereals and anything else considered to interfere with the working of warfarin. I am now restricted to a diet of meat and carbohydrates only.

Not only that, I have to have a test known as the International Normalized Ratio (INR) that is used to check the level of bleeding or clotting. Ideally, it is meant to be a number between 2.0 and 3.0; Below 2 means I’m clotting excessively and above 3, means I’m bleeding excessively. This figure helps me adjust the dosage of warfarin I’m on and the test can be done daily, weekly, bi-weekly or monthly depending on the levels.
Living with APS is terrifying. I cannot explain the crippling fear that overcomes me anytime I have a splitting headache that just won’t go away or pain in my calves and the visible clots all over or pain on the left side of my chest. The possibilities of all that could go wrong are just too heavy to even bear. But I’m often reminded, that this is my battle and I have to fight. No retreat, no surrender.

We all go through those rough days when I just let my mind wander and let in all the possibilities of what could be. And when you’ve lived the life that I do, those thoughts often lead to scary places. But, this is what is. We bear that which we can with courage, faith and hope, and leave that we cannot, to a higher power.
#APSAWARENESSMONTH #GOBURGUNDYFORAPS!

For more of Wendie Gikono’s battle with Mixed Connective Tissue Disease, visit her blog MCTD Warrior. For more information on APS please visit The APS Foundation Website.