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.

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!