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.

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.