Ask A Question Tuesday – All About Lupus #Sheblossoms #ThreeDaysofGratitude

Hello Friends,

May is Lupus Awareness Month. This May, the Lupus Foundation of Kenya has planned a series of events and projects to help relate awareness and provide information on Lupus for those who need it. I thought we’d start the information campaign a little earlier on here.

We all agree that a part of finding solutions is getting information. After the very successful She Blossoms Lupus Awareness Day, I have decided to commit more of my time helping others get information about Lupus. One of the ways I can do this is by consulting with lupus fighters, their families, doctors, health care givers, insurance providers and so on.

I’ll start us off with 2 questions and answers. You can add more questions in the comments section of this note and we can start looking for answers. Simpler answers will be provided responses immediately. But if anything needs further research, my team and I will put effort on it and post a longer note – with expert opinions – next Tuesday.

Please note: Sheblossoms will not recommend a particular regiment of treatment or management. We will simply provide information to help you explore your options and hopefully make better decisions about your medical care.

So here we go!

1. What is Lupus? 

Lupus is an autoimmune disease. Autoimmune means that your immune system identifies tissue and organs as though they were a virus, bacteria or foreign body. The immune system then launches an immune response meant to protect your body but which instead harms it.

Symptoms can be mildly irritating, moderately disruptive or severely debilitating and life-threatening. They vary from rashes, inflammation, arthritis-like symptoms to renal failure and cardiac disease.

There are 3 main types of lupus, although lupus can have a few dozen variants within the categories.

a. Systemic Lupus Erythematosus – this affects connective tissue, body organs and the circulatory system (blood, heart and veins.)

b. Discoid Lupus – this affects the skin although it may or may not have aspects of systemic lupus.

c. Drug Induced Lupus – certain types of medication can induce lupus. Once those drugs are withdrawn the condition often resolves itself. 

2. How do I know I have Lupus?

Because lupus often mimics other illnesses and disorders, it usually takes a while before diagnosis can come by. If you have had persistent issues of inflammation, fatigue and infection, your doctor might begin to screen you for Lupus.

A doctor who specializes in the care of Lupus patients is called a rheumatologist. A rheumatologist treats patients with autoimmune diseases such as lupus, arthritis, multiple sclerosis and the like.

It is much easier to get started on lupus screening if you see a rheumatologist. The doctor will look out for 11 main signs of Lupus. 

Fact: there are currently 8 rheumatologists in Kenya to a ratio of about 200,000 lupus patients. (consider the fact that they also care for other patients with other illnesses that fall under rheumatology, in addition to training and teaching time.)

Have more questions about Lupus? Please add them to the comments section now! 

A Little Note about Me: My name is Juliet Maruru. If you’ve visited my blog before you probably know that and know that I have been dealing with chronic illness for a while. The symptoms have yoyod from mild to horrid to really life threatening. 

A few months ago my diagnosis was upgraded to Mixed Connective Tissue Disease (a crossover of Lupus, Scleroderma and Myositis) with Secondary Cushings Syndrome (hormonal disorder affecting adrenal glands) and 2nd Stage Heart Disease. My doctors, nutritionist and fitness trainers have helped me work hard enough that I am hoping that in a few more months I can have the Cushing’s and heart disease catergorised to something with a better prognosis. I expect to continue managing MCTD for the rest of my life.

All of this has been taxing, mentally, emotionally and financially; not just for me but for my family, too. The #Sheblossoms campaign was started in the hope of alleviating the financial strain, and it has, in a small way – and for the donations, support and outpouring of love, I am deeply and incredibly thankful. I expect to continue dealing with these expenses – mental, emotional and financial – but in the campaign I found some kind of renewal and purpose.

I still don’t know for sure what my prognosis is. But as I wait for direction and resolution, I have decided to do my very best to help others find answers and guidance in accessing resources. A little part of this is selfish – from the realization that continuing in the dark silence I’ve existed in for the last few months might in a way lead to my giving up a lot sooner. But a large part of it comes from seeing how much my friends were willing to put themselves out there for me, and in a way completely removing my justification for self-pity.

This is a new leg of the journey for Sheblossoms. I suppose there will be more reflections of it on this blog and on my personal journey. Please enjoy the ride with me.

Thank You Very Much for Your Support #ThreeDaysofGratitude #Sheblossoms #LupusAwareness

My Dearest Friends,

Thank you so very much for coming out in numbers and for your support in words, cash, donations and presence towards the #Sheblossoms Lupus Awareness Day and Fundraiser.

From me, and from my family, our deepest gratitude! 

  
 I am particularly forever indebted to my friends, Anne Eboso – The Reading Mama and her husband and partner Ken Okongo, Wangari the Storyteller, Lucie Sedlackova – From Czech with all the love, Sisa Mabhena – From Slovakia with even more love, Denet Odhiambo, Ian Arunga, Michael Ikua, LtCeasar, Raph Ngunu, Julie Muriuki, Faith Linyonyi, Magunga Williams and Abigail Arunga, Kibali Moreithi, Morris Kiruga, Ngartia.

Friends in the arts and literary communities – Kinyanjui Kombani, Tony Mochama, Alexander Nderitu, Temo, Wemo Kitawa, More Argwings-Kodhek, Moraa Gitaa, Aleya Kassam, Muthoni Garland, Maimouna Jallow, Millie Dok, Ciru Ngethe, Dante and his group – The Three Guys, Gcho Pevu, Dorphan, Abraham Gumba, KIU the Band, Prisca Ojwang, Ayrosh, Chris Masika, CeEl, Rixpoet, Edgar Olando.

Special gratitude to Dr. Etau Ekwom for his presence and time with us at the awareness day.

The following groups brought their all – 1000 Rides, Velo Nitrous, Lupus Foundation of Kenya, PAWA254 as well as the management of All for Cars, Phoenix Publishers, Longhorn Publishers, Storymoja – I am humbled.

I would like to mention and appreciate my family for the support now and in the long term. My mum and my aunt Nduta and aunt Hannah. My cousins Wambui, Wanjiku, Wanjira, Judy, Eva and my little nieces and nephews. uncle Kimani and Uncle Gichanga, although you couldn’t make it to the event itself, I felt your love. Alexander Eichener, Anja Ansellmann – thank you, these last few months have been easier because of you. Pauline Munyi and Sony Kimani – thank you!

The #Sheblossoms event team will release a final report in the coming days. But until then, to all above, and to the many others whose names I may have missed – Asante Sana!

I don’t know what the next few months hold for me personally, but I know that I have donned the Purple Riding Hood and intend to fight and outwit the wolf (lupus) in every way I can. When appropriate, (I may still be a little way from getting a fully mapped route because funds still seem rather short for most of my options in medical care), I may inform you of some of these ways.

Remember, May is Lupus Awareness Month worldwide. Lend your voice to the fight against Lupus. Finding a cure begins with hope!

When #Sheblossoms is not just about me – Lupus Diaries

So this is happening.
  

1. I have good friends. I have not lifted and will likely not lift a finger towards organising this. These days I get tired from just waking up so this is good.

I’ve been out of commission for about 8 months now. This time it was really out of commission. Usually, I hit a bad patch and I get a little housebound in recovery, but I keep my wits and continue working from bed.

I’m a writer, blogger and online content editor, so working from bed is doable. I take on editing jobs, ghost writing gigs and so on on the side and that’s usually also doable. I love teaching creative writing especially to kids, and talking about art and art solutions with grownups. A day in a week out is usually also doable.

But this time, this thing just knocked me flat out. This thing is called Lupus. Lupus is this mystery that everyone including doctors and health care givers struggle to understand. And this mystery gave me the knockout punch of the century. So I’ve just been sitting on the sidelines reeling.

2. I’m glad that in between friends talking about books, stories and art, there will also be more talk about Lupus. I believe that improvement in the way Lupus is handled in Kenya will happen only if more people are aware of it, it’s symptoms and how it affects those who live with it. #LupusAwareness

It all started when a bunch of my friends showed up at my house unexpectedly. These days my mum handles my diary. She tries to keep my stress levels down so sometimes she plans parties and I have no idea it’s happening until there’s so much laughter in the living room I just have to go out and investigate. 

So my friends showed up and we laughed, and just when exhaustion started creeping in, someone asked, ‘but how are you doing?’ It’s a loaded question to which I invariably reply to, ‘I’m fine.’

 There was silence. And more silence. 

So, I blurted out, ‘yeah, I’m fine. I am confused. I have no idea if I’m getting the right medical care. Everything changes every week. And I’ve maxed out my insurance, used up my savings and my mother’s savings, and I’m pretty sure the strain on dear old mzee, is about to start showing. (And I think – Oh, he would love being called mzee, but he is a dear, isn’t he?) and this idea about getting better care in India is just making me tired. Yeah, I’m fine.’

That’s how it started. 

Someone said, ‘We need to help.’

I said, ‘ I need help.’ You have to know me to realize how momentous a confession that is.

Someone said, ‘Ok, what do we do?’

I said, ‘ I have no idea, but whatever it is, it can’t just be about me. Can you imagine how many people are suffering like me, waiting at KNH, or using up every single cent in private hospitals, giving everything they have to survive, but more often than not just giving up and going ‘home’ to die?’

And then someone said, ‘But, what is Lupus?’

That’s what #Sheblossoms is about. I need help. But I also hope that an event that encompasses everything I love can be an opportunity to talk freely about an illness that affects so many.

3. May is Lupus awareness month. Organizations like Lupus Foundation of Kenya and people like Wemo Kitawa and G-baby Allan will be doing things to help you understand a little more about Lupus. 
  
In the meantime, just a little info to go:
Lupus is an autoimmune disease. This means that your immune system targets tissue and organs as if they were a virus, bacteria or foreign body. It can affect one or more organs, but most commonly connective tissue, lungs, heart or kidneys. There are several types of Lupus. The most common are:
Systemic Lupus Erythematous (SLE) which affects blood, tissue and organs.
Discoid Lupus affects skin.
Neonatal Lupus affects babies in womb and newly born.

Drug Induced Lupus is triggered by certain medications but can be cured once the offending drug is withdrawn.
I have mixed connective tissue disease. This is, as my doctor tried to explain an overlap of SLE, scleroderma and polymyositis. SLE is the strongest disease but at my worst the other two also manifest in the form of raynaud’s syndrome – my hands turn blue, difficulty swallowing and sometimes breathing and muscle weakness. The most common treatment for this is corticosteroid therapy. Unfortunately for me, this therapy triggered another disorder called Cushing’s Syndrome. Cushing’s Syndrome is characterized by abnormal weight gain, most of which is water weight, heart failure and blood sugar imbalance.
Secondary disorders are common for people living with lupus. At the height of my illness in the past 10 months, I had 14 disorders. I am still fighting 7 the main one being chronic heart failure. It has meant seeing a rheumatologist, cardiologist, endocrinologist, neurologist and nutritionist. 
Each doctor has their consultation fees, each one of them will send you for a gazillion tests, and then there’s the medications. The other option is to get on the KNH line, where everything goes slow. I don’t blame the doctors. KNH has some of the best trained doctors, but the medical system often fails them. The load of patients is too heavy and the support systems for doctors and healthcare practitioners is lacking. So the patient suffers. This is in addition to the fact that research into how Lupus affects negroid Africans living in Africa is limited, therefore medication and care is also limited.

I am a fighter, but I would really like to thank my family, especially my mum, and aunt Nduta, and Alexander Eichener for always being encouraging. My friends Anne Eboso Okongo, Wangari Grace, Julie Muriuki, Sony K Imani, Raphael Roba Ngunu and that other one who hides from social media for not giving up on me even when I am too tired to pick the phone up or get dressed and get out to do what we planned. 

This too will be overcome. I continue to blossom, like the desert cactus. When the sun is hot, I survive, when it rains, here I am, I blossom.

Grateful for Right Now

It has taken a really long time to get to a point where I can actually enjoy exercise. Starting out, I’d be pretty convinced I was dying 5 minutes in. My heart was acting nuts, and the updated diagnosis of Mixed Connective Tissue Disease on top of congestive heart failure means pain, pain, pain and more pain. 
A few months back, bestie Julie Muriuki and I met a lady with 9 autoimmune disease disorders and we didn’t think we could handle anything like that. Yeah. We both went through heart failure within weeks of each other. This on top of fibromyalgia for her and SLE for me.
The updated diagnosis of Mixed Connective Tissue means I still have Lupus, but I also have to worry about sclerosis and polymyositis.
You don’t think you are strong enough to go through the worst and come out stronger and better until you actually have to do it. 
Last week, I collapsed at the gym just a few minutes after spending an afternoon giggling with a couple of friends and playing with Guillermo. Friday night, well, evening, after spending a day hooked up to monitors, doc tells me: 
So, si you will really enjoy the weekend, right? You are doing great. Go! Dance, go out on a date, do something fun! I’ll see you next week but I want all the dets. (He is a 50 year old guy so you can see why giving him the dets on a potential date would be… Wait, who am I even dating? Did I kidnap the cute boy while I was passed out cold?)
Anyway, feeling a little if-I-die-I’m-gonna-die-laughing, I get back to the new normal. Wake up. Read. Write. Play with Guillermo. Go to the gym. Dance with my imaginary boyfriend. Make up dets for doc. 

  

I’m really beginning to enjoy the gym sessions. Lately, my time slot is full of women of varying weight and fitness levels. We are not friends. But we cheer each other on as we work out. Actually, we don’t even know each other’s names, and I think we all like it that way. We have our different struggles, but when she is working on set 3 on the bench press we are kindred sisters.
I upped my gym time to an hour and fifteen minutes this week. Yesterday, at the end of my session, I was stretching on the mat and I had a moment of clarity.
I am grateful to be alive. But even if I do die, it will be okay. I’m grateful to be alive right now.

Bring the Music! #Lupus Diaries

I had a rough day today. But I was determined not to let it bring me crashing down. So I bit down on my jaw and dealt with cycle 2 of chemo. No radiotherapy for a few more days, thank God! I was doing pretty well until the lady in the chemo couch next to me decided to deal with a bible-thumping praying companion.

I don’t think my chemo neighbor is against prayers as such. From what I gathered of her completely unexpected outburst, she was only against prayers that ignored all facts, negated all efforts and wished upon dying stars to rain down miracles, ‘so you can go home and not have to deal with the fact that I have bloody-bad-word cancer!’ I suppose this was made all the more worse by the fact that the bible thumping prayer warrior was not an every day companion but someone who had come to visit about 4 months after diagnosis and was not entirely aware of the many battles, triumphs and defeats in-between.

There was silence. Then I came crashing down with hysterical laughter-sobbing-oh-my-lord-I-am-emotional-about-someone-else’s-family-fight!

It got awkward. Prayer warrior eventually walked out and left cancer warrior with her generals – an ever present husband and a daughter taking time from work to hold mama’s hand. Daughter crossed over and held my hand, gave me a wet wipe for the crazy tears and then we started telling tales of the awkwards, the ‘don’t say you have cancer’ or ‘lupus’, the many ‘if you accept it, you have given up’.

It is awkward. It is horribly awkward. You don’t understand it because you haven’t lived this war and come out wanting to be alive more than anything. You don’t see how a human with their mortality served up as breakfast every day can still love, laugh and live without giving up. Surely, where death lurks behind the door there shouldn’t be music, dance and laughter!

All you can see is the mortality. And it makes you feel awkward and helpless. So you are tempted to pretend that a miracle will happen and this will just go away. You wish. Because then you can stop feeling helpless, and awkward. So you pray, and wish upon stars, except maybe you don’t really do that for us. You pray and make those wishes so you can feel better. 
Of course, we value your prayers, and your thoughts. It means we are not entirely alone in this battle. 

But this war, this war has camped and dug its heels in our front yard. We can’t wish it away. We wake up every morning and count our ammo and our wilderness survival supplies. No choice about it. 

We think about the ambush the enemy may have planned, or maybe not, but just in case, we prepare. Sometimes, we are rousted from sleep, and routed into the battlefield before we are quite awake. So we have learnt to go to sleep with the weapons ready and the supplies at hand. Some of us even sleep with our boots on. So yeah, a sleepover might be awkward, awkward for you at my house, awkward for me at your house. Yeah, maybe it won’t happen.

When you discover that we have an inner circle of warriors, people who step into the closet with us and hold us as we wail with momentary despair, who join us in shooting blindly at the bogeyman through tough and dark nights, sometimes hitting the mark but most times not, who keep on marching with us when we dare march the battle in the daylight, who drive the demolition derby with us whether by sunlight or spotlight, never tiring, always on guard, always fighting…

Of course, it is awkward. Because it is not your war, and this one is not your battle. Unless you choose to make it yours, and join our army of warriors. And even then, some corners will be awkward, but at least then, you’ll have committed to the awkward, the waves of helplessness, most of the insanity and pretty much all of the GOOD TIMES!

Oh yeah, we have those too. Good, really great times. But chances are you’ll probably only witness them if you are in the inner circle. So don’t feel pity, or sadness, at least not for us.

We value your kind thoughts, and your prayers. But maybe don’t try to fix it. Don’t try to wish or pray it away. Pray, instead, that we have strength to fight one more day, that the medication and therapy choices work, that we see more of sunshine and laughter than darkness and pain.
If you really must step into the battleroom, bring the music and the dance and the laughter. Except maybe not so loud, but bring it!

Forgetting the Spades I Haven’t Got

Living with a chronic illness, or two, means that you choose to accept your condition and then do the best you can to cope with the bad times (which can fill up the landscape) and deal with the good times.

A friend of mine pointed out that the good times have to be dealt with. Occasionally, you will wake up relatively pain free. If you deal with depression as a side dish to your chronic illness, there will be a day when you wake up with a somewhat clear head and loads of energy. Then what? My MO is to panic and try to fit in as much as possible into my life before the clouds come crashing down. This method brings on the crash sooner and harder. Which is what my friend was pointing at.

I am slowly teaching myself to accept the bad times, deal with the pain, take care of myself physically as well as emotionally, ask for help when I need it, be less negative, hope that fellow humans have enough goodwill, excel at my work even when my health kicks me in the gut, be kind and generous to others…

What is taking me longer to learn is how to pace myself when the good times come. I want to love with everything I have, I want to live with everything I’ve got and I want to dance, sing, swim, play, laugh… And when I think I can, even for a little while, I want to do it all… then I am afraid it will go away too soon.

I am going to have to learn to devour life with the spoons I’ve got, and not worry about the spades I haven’t got.

How to Deal with the Spoons you Get:

If you have Lupus, you will have moments of sadness – just like everyone else. But your sadness and lack of vigour may be compounded and lengthened by pain, medication that change your brain chemistry or even by Lupus affecting your brain chemistry. So yes, you will likely face depression. How can you cope?

1. Talk to your doctor if you feel depressed. Your doctor can help you figure out if you need adjustment for your meds or need to see a mental health care practitioner.

2. After initial diagnosis, you will go through the stages of grief – denial, anger, bargaining, depression before acceptance. Try to actively reach acceptance of your diagnosis as this will help you start to take the right measures to take good care of yourself. If you are in denial or still bargaining, you will likely not take your meds properly, you will not be able to see how to adjust your life positively. If you are angry you will lash out at people who care. So talk to someone about your feelings.

3. Talk to yourself. Use positive self talk and avoid negative self talk. This is a tough one as you will have to actively look for things to be grateful for. Making adjustments to your life will help. Understanding that adjustments from the normal way of doing things does not make you less valuable is key. For example, I can no longer handle a daily commute to work and there will be times when I cannot work for hours. Rather than give up and give in, I decided to negotiate for alternative terms of work that allow me to work from the relative safety of my home at relatively flexible hours.

4. Surround yourself with supportive people. Probably one of the first things my doctor told me when I got my diagnosis is that having negative & difficult people in your life will kill a lupus survivor sooner than the disease itself. It can be hard to cut out those parts of your life that make it harder for you to cope, but it is absolutely necessary. Don’t apologise for wanting to have a positive environment.

5. Take one day at a time. Don’t worry about all the things you have to do. Be organised and then do what you can when you can.

6. Watch your moods closely. Do you feel worse after eating certain foods or doing certain things? When do you get highs and when do lows hit you? Keep a journal so you can work out the patterns. Then determine to change the routines that make you go into depression.

7. Keep a list of ways to feel better. I can’t go to the gym every day, but 45 minutes of exercise every other day keeps my moods stable. Reading certain things lift my moods. I am fortunate that I can still keep pets and spending time with my dog makes me feel better even in a down in the dumps day. I still have no idea how to deal with human beings as outcomes can be unpredictable, but I am generally aware of which type of human beings make my day better.

8. Connect with your spirituality. This means a lot of things for different people. It can mean anything from prayer to writing, drawing, photography, helping those in need, really anything that makes you appreciate life and the universe. For me, this takes on a deeply personal effort to maintain certain routines that are essential to my spiritual well being.

9. Lastly, stay active. When in pain, you don’t want to or are afraid to move. But activity makes you stronger, provides a circulation of endorphins and lifts your spirit. Identify a form of exercise that works best for you. Don’t overdo, but don’t freeze up in fear either.

So there, let’s go: Eat life with the biggest spoons we’ve got, forget the spades we haven’t got!

The Girl Who Loved Books

There’s nothing like a bunch of book nerds on a road trip with no psychedelics. And by book nerds, I mean all of them, driver included, in a van to Eldoret. There’s a book title in there.

What do they talk about? Books. Science. Books. Pseudoscience. Books. History. Books. Comparative Languages. Books. African History…

And at some point, someone is inspired enough to compose Kikuyu Romantic Poetry which roughly translates to:

Her face was shining like the sun,

The scent of Rosemary clinging heavy against the sheep oil,

Her face adorned with a halo of buzzing flies…

 No, I did not say they were poets. Just a bunch of book nerds sent off to deliver 1000 books donated by the Varkey Foundation to the Kipkeino School Community Library under the Start a Library Project. The beneficiaries of the books include the Lewa Children’s Home and members of the community surrounding the school. 

But back to the road trip…

My new assignment now involves a number of these trips every month. Last month sent me to Kandutura, a place beyond the Ndeiya I used to hear off in the same phrase as: why are you behaving like a kariko from Ndeiya, usually when I wiped off a runny nose with the back of my hand. I was five!

Kandutura was not as long a drive as the road to Eldoret. But it was a long drive through country I had no idea existed. Beautiful, almost unadulterated.

And the look on these children’s faces when they realize that they have access to all these books. Such joy that makes me realize just how much I took for granted my mother’s efforts to give me access to books all through my childhood.

 

Partner in crime, Namulanta of the Varkey Foundation (centre) shares books with students from Kipkeino School

 
But the road trips themselves have brought something new to my life. As a Lupus Soldier, I’ve spent the last 5 years of my life living in fear. Fear of infection. Fear of getting sick suddenly, in public. Fear of being a burden. Fear of death.

These road trips, they haven’t negated the fear. They’ve just brought this burst of fresh air and hope, and along with it a clarity that I hope will give me courage to keep going, keep living while I still live.

So on the way back from Eldoret, with pretty much every nerve in my body buzzing with pre-exhaustion, I give in to a game initiated by the girl who loved books. Stringing up conversation on phrases made up of book titles. Book nerds, I said. 

Tomorrow, I’ll probably not be able to get out of bed, I can feel the fever coming on. Dr. Tomas will be furious. But I am happy right now.

Also, as has been the custom since our first road trip, I am gorged on Indian Sweets. Bliss.