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

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.

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.

The Lupus Chimera & Chronic Creatives 

Greek mythology tells of a monstrous fire-breathing hybrid creature of Lycia in Asia Minor, composed of the parts of more than one animal. It is usually depicted as a lion, with the head of a goat arising from its back, and a tail that might end with a snake’s head, and was one of the offspring of Typhon and Echidna and a sibling of such monsters as Cerberus and the Lernaean Hydra.

This guy doesnt look so scary now, does he?

A Genetic Chimera is an organism that contains more than one DNA type in its system. It can present visually with attributes associated with the dominant DNA type (lion) or present with mixed features (lion, goat, snake). Some humans have been identified as being chimeras in that they carry the DNA of two individuals in their cells. It is a rare phenomenon which usually occurs as a results of two identical twins merging at early gestational development stages.

This gorgeous chimera cat is the result of twin gametes merging.

Lupus – an autoimmune disorder. Your body’s defense mechanisms (immune system, white blood cells etc) turn against what they are supposed to protect (cells, tissue, organs), causing pain, inflammation, rashes, skin disfigurement, organ failure even death.

Lupus Symptoms

By now, you must be wondering why I’m going on about chimeras, genetic chimeras and Lupus.

To further discombobulated you, I’d like us to stop thinking about DNA, biology, Greek mythology, chimeras and the medical implications of Lupus.

I’d like us to focus on a person for a moment. This person has to live with Lupus. Aside from the fact that this person has been diagnosed with and suffers the symptoms of Lupus, this person is a woman, a man, a boy, a girl, a mother, a student, a worker, an artist, an accountant, a designer, a Doctor, a nurse, a car salesperson, a nanny, a teacher, a writer, a software engineer and so on and so on.

Let’s use a woman as our arche type. Her name Angela. (the following story is purely fictional. Resemblance to actual places, people, circumstances is completely unintentional.)

Angela grew up in Nakuru, raised by a wonderful single mum who unfortunately died a few weeks after Angela completed high school. Angela had performed well enough it wasn’t hard for her to get a scholarship which meant she could complete her studies in business and information technology. She eventually chose software engineering as her path and was soon employed at intern level by a global information company. Following graduation, her path eventually led to taking up an entire software development department with acclaim as one of the youngest women to ever do so in Africa.

Shortly after this she got married, at the age of 29, to her best friend, Stephen. Angela and Stephen had in university though he had taken the path of Criminal Law. At the time of their marriage he has just started up as a junior associate with a prestigious law firm in Nairobi.

Soon they found that they were both at a great place financially, emotionally. So they decided it was just the right time for them to start a family.

Getting pregnant was easy! Angela and Stephen saw a gynecologist before who told them they were just fine and good to go. And they were. Conception happened as soon as they stopped using contraceptives. The first six weeks were a breeze. Just a bit of morning sickness but nothing adverse. They kept up their medical appointments and on the 12th week they told their respective families! How ecstatic they all were!

Then it happened. The migraine from hell. Angela wasn’t new to migraines. As a techie she’d often get those made in hell headaches and blame them on too much screen time, or perhaps all nighters coding or trying to finish a hack in time for presentation to a client. Rest, Syndol, or MIGR 10 when it got too bad, and lots of water and usually her system would right itself.

But this was different, not just because there was a pregnancy involved. Angela could feel something was wrong. So she went into the doctor. A few tests suggested watching out for pre-eclampsia because of the high blood pressure noted. Otherwise once her blood pressure was stabilized she was sent home.

Extreme fatigue set in. Followed by hair loss; clumps of hair would just fall off. Then came the rashes. All were expectations of a tough pregnancy. Angela took time off work earlier than she had planned. The pregnancy was rough. Angela was ill most of the time. Stephen started to feel the strain. At first he arranged for his mom to come and help. But the fall out escalated fast – Angela who had previously gotten along well with Stephen’s mum couldn’t stand the woman. And Stephen’s mum complained that Angela was lazy and simply making it out as if the pregnancy was too rough.

Finally, as Angela entered her third trimester, her mum in law had to go back to her farm in Kericho.

With Stephen’s mum gone, they had to consider outside help in managing their rather large 4 bedroom apartment which they had acquired in expectation of children. So they hired a housekeeper. Martha was an older woman who turned out to be a blessing for Angela.

A few weeks after hiring on, Angela experienced another of what she thought was a migraine. But in Martha’s experienced eyes it was something else. She insisted that Angela go in to hospital. By then, Angela’s sight was blurred and she could barely stand on her own. Martha called a cab which fortunately managed to get her to an emergency room in 30 minutes.

Angela’s blood pressure was through the roof. Within a few minutes of arriving at the hospital she suffered a heart attack, which was a result of pulmonary embolisms they later found out. In the course of stabilizing her, it became necessary to deliver her 32 week baby. She was in eclampsia and that resulted in uncontrolled bleeding once the baby was born by Caesarian section. Angela barely made it alive and for days after, her husband and family could only pray and wait.

Surprisingly, once in neonatal care, though in an incubator, baby Gabriel stabilized really quickly.

Not so for mum. Angela had both pulmonary embolisms, indications of clotting improperly and extreme bleeding from the womb, indications of not clotting properly. Between stabilizing her clotting factors and her blood pressure doctors found even more embolisms in the brain and lungs. Fortunately, the cardiologist called in to assist the obstetrician and obstetric surgeon had seen a similar case during his training at Beth Israel Hospital in New York. He decided to call in a rheumatologist, but went ahead and ordered a batch of rheumatology tests.

Over the next few days, Angela’s condition seesawed. Eventually her test results came back indicating Systemic Lupus Erymathotus with Antiphospholipid syndrome and secondary Deep Vein Thrombocytopenia.

Angela probably didn’t realize it then, but her whole life, her whole life with her husband Stephen, her whole life with her husband Stephen and son Gabriel was now going to revolve around the fact that Angela had Lupus.

Several years of coping, learning, unlearning, relearning, and Angela is the stay at home mum of a boisterous 4 year old. Martha is still the godsend nanny, mothershelp that Angela needs to keep her home organized. Stephen is kind, understanding, but the strain is showing. He is taking more jobs at the firm not just to prove his worth so he can get a high level of income and privileges, but so that he can over for the income Angela can no longer earn. This means longer hours at work and fewer at home with Angela and their son.

Angela does her best, when her energy is higher and the flares are in remission, she takes short term jobs here and there. But it’s really not the same. There are times when Angela feels like she has lost her identity to Lupus. The dominant part of her life revolves around making sure flares stay away, or when in flare, keeping symptoms to a minimum. Raising her son has to be within parameters set by Lupus. Dealing with her husband has to take into account so many things, such that a simple date night feels like planning a whole wedding. Sex is not spontaneous. Life is not spontaneous.

Angela is no longer Angela who grew up in Nakuru became a software engineer and married Steve then had a kid named Gabe.

Angela is now the Angela who has lupus.

But is she? Does lupus completely wipe out all other identities?

I often find it hard to use the ‘person before the disease’ rule because of how intensely lupus pervades a person’s life.

Using the chimera analogy has its problems, but it works for me. The butterfly goes through such intense metamorphosis before finding beauty as a short lived but awe inspiring winged creature. The wolf is yet another awe inspiring creature, powerful and resilient, often surviving the harshest conditions. Both are used as symbols of lupus because the lupus rash often resembles the wings of a butterfly or the facial markings of a wolf.

I often add in yet another symbol, one chosen for me by someone I love dearly. A blossoming cactus. A blossoming cactus lives in the harshest of deserts. It survives the long dry season but during the very short lived rains it blossoms with a blushing pink orchid.

When I think of a Lupie, I think of them as a combination of these 3 things. The beautiful butterfly. The powerful wolf. The resilient Cactus. That is my Lupus Chimera theory.
But my Lupus Chimera theory also takes into account that being ill does not take away our thinking abilities. Yes, we might have brain fog, fatigue, but often Lupies remain sharp mentally and quite creative.
I thought of the lupus chimera to explain to a fellow Lupie that we don’t have to be one thing only, a Lupie. A Lupie can be a mom, a sister, a career woman, A biker chick (this one amuses me), a hiker, a teacher, a bookworm, a movie nerd, whatever she is able to be.

Image courtesy of

In the process of thinking through the lupus chimera, the thought of the Chronic Creative was born to represent creatives living with chronic illnesses. While wearing their illness as a badge of honor for teaching them courage, honor and resilience, they add beauty to the world with their creativity.
With a little planning, a little help, some teamwork, Chronic Creatives can find pleasure in creating beauty, developing solutions, and even providing services in a way that can build self worth & earn us some income without draining away all our spoons.
What do you think of:

a. Lupus Chimeras?

b. Chronic Creatives?

Would you like to be a member of either? Lots of fun creative activities planned for both! In the meantime, Support She Blossoms and friends on Facebook. Talk on Twitter with @Sheblossoms about Lupus and any other ideas you might have.

The Lupus Foundation of Kenya holds support group meeting every month where you can learn how to cope, find doctors and friends to leans on.

If you have a question, or just need someone to talk to please feel free to Facebook us or talk to me on twitter!

Pain & Lupus – #LupusAwarenessMonth

In 2010, I was quoted in a Standard Newspaper article saying, ‘It only hurts when you cry,’ about my lupus diagnosis. Oh, but it hurts! Pain and inflammation are often the first signs of Lupus. With time, people living with Lupus experience so much pain, that they begin to make jokes and laugh about it. But when it hurts, it hurts.

The last few days I’ve been experiencing incredible muscular skeletal pain, alongside a headache from hell. The usual NSAIDS didn’t work, so doc tried slightly stronger meds, then upped up to Tramadol before hooking me up to a corticosteroid + painkiller + rehydration combo IV.

By then I hadn’t slept more than 8 hours in 5 days. I was in pain, a little manic and frankly driving everyone around me nuts. I couldn’t work out, it hurt too much, and honestly I didn’t have the concentration to follow through with an hour of organized exercise. I read to distract myself, but I was writing way too much. I often write like crazy when I’m manic. I’m actually shocked that what I wrote actually makes sense.

Finally, doc decided to give me a dose of bromazepam, and things started to slow down. I’m still in so much pain the idea of getting out of bed is torture in itself.

Even when major organs are not involved in a flare, Lupus pain can be so debilitating it becomes impossible to keep up with chores, work routines and day to day life routines. Pain changes you. It makes you overthink simple decisions. It makes you difficult to deal with. It can also often create a sense of paranoia which is hard for those around you to comprehend.

Understanding why you experience so much pain, is a good way to start dealing with it.

It is not uncommon for people with lupus to experience muscle aches and pain (myalgias) or have inflammation of certain muscle groups (myositis), which causes weakness and loss of strength. More than 90 percent of people with lupus will experience joint and/or muscle pain at some time during the course of their illness.

Muscle aches and pain may be from symptoms that happen when your body is responding to some type of inflammation, from muscle atrophy (weakness) or from a true myositis.

In my case, I have Lupus, Scleroderma and polymyositis, a crossover condition known as Mixed Connective Tissue Disease. Inflammation, scar tissue and inflammation and weakening of certain muscle groups causes pain in my mid section, rib cage, spine, waist and joints. Muscle weakness can also cause lack of coordination which can result in accidental injuries.

Pain medicines are helpful, and in many instances necessary. It might be necessary to consult a neurologist for help in pain management. But, because there are always risks and side effects with medications, it is a good idea to explore other approaches to pain relief.

Joint and muscle pain can benefit from heat and/or cold applications. Moist heat soothes painful joints much better than dry heat; soaking in a hot tub, sauna, using a moist heated towel, or taking a hot shower can be helpful. Ice or cold applications are advisable only for strained or twisted muscles or injuries. Follow the RICE (Rest, Ice, Compression, and Elevation) method to relieve pain, reduce swelling, and speed healing. Begin right after the injury occurs and continue for at least 48 hours.

Behavioral techniques, such as progressive relaxation, focused breathing, low-impact yoga and guided imagery also can be effective tools for pain management. By directing your mind’s attention away from the experience of pain, these methods help to relieve the stress and tension that can actually make pain worse. These techniques are safe and easy to do, but they also allow you to take control of the pain, rather than just reacting to and suffering with it.

Personally, learning simple yoga movements alongside focused breathing helps me deal with certain pain levels before resorting to medication. As a rule, pain meds are a last resort.

Alternative healing practices such as acupuncture and acupressure, biofeedback, and chiropractic adjustments are used for pain relief and may be effective for you. Please be sure to discuss any alternative treatments with your rheumatologist before start them. (For more info on pain and lupus, visit
In general terms, regular but moderate exercise, a balanced diet, proper rehydration and enough rest can help you manage pain better. I’ve found that strengthening my core has helped reduce waist and spinal pain. Stronger muscles means less incidences of tendinitis. But make sure you start working on these with a trained professional who understands lupus.

One challenge for regular exercise for Lupies is the risk of inflammation as a result of overworking or even simple lactic acid build up in the muscles. So go slow, do just enough and tomorrow is another day.

Follow SheblossomsKE on Facebook and @Sheblossoms on Twitter for daily lupus conversations. The Lupus Foundation of Kenya runs a monthly support group meeting and has resources that can assist you identify helpful doctors and health care support.