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Mary Murugi, on her experience living with chronic illness

Some know her as the only sibling to popular entertainer DJ Crème de la Crème, others, especially her thousands of followers on social media, as a rheumatoid arthritis warrior. As the world marked World Arthritis Day on Friday, we got a moving account from 32-year-old MARY MURUGI, a project coordinator in the telecommunication industry, on her experience living with the chronic illness and battling constant agonizing pain

My medical journey started two years ago, March 3, 2016. But, allow me to take you back to two years prior to that, in early 2014. I was living an unhealthy lifestyle in terms of diet, taking a lot of junk. I never realised I was gaining weight, and I hit a whooping 98kg.

I was very comfortable. In fact, I never saw anything big, until one day, during the company Annual Health Week, medical examinations cautioned me against my weight.

I made a decision that come August 2014, I would work on my weight. I am the kind of person who once their mind is set to something, it has to be done. I was fortunate enough that we had gym at work, and every day at 12.30pm, I would go to work out.

I did a minimum of three days a week. I substituted my lunchtime with working out. I fell in love with the gym, especially when I started noticing some weight loss. I combined that with healthy eating, and I became that salad girl. I would finish working out, grab my chicken vegetable salad and eat at my desk.

I managed to shed 25kg within no time, and weighed 73 kg. But, one thing I noticed was anytime my trainer asked me to do two sets of sit-ups, at the last ten, my back would ache terribly, as I was also squatting with heavy weights, and eventually this put so much pressure on my back.

THE GENESIS

On March 3, 2016, I went to the gym as usual, began with the StairMaster power machine and did 87 floors. Immediately after, I felt a sharp pain on the left side. I attempted to squat but that was very tough also. I gave up and knew it was probably just a muscle sprain.

The two screws holding two spinal discs for back stability.

So, I went about my afternoon work, but the pain was too much.

I went to the in-house clinic and got some muscle relaxants, as well as three days bed rest recommendation. Little did I know, three days would turn into six months. The sequence of events that followed left me and my family confused, with a lot of questions.

After three days of rest, the pain was more severe, and I was scheduled for an magnetic resonance imaging (MRI). The results came back normal. I moved to a second doctor, who thought it was just a muscle sprain. I was given painkillers and more rest.

In a span of two weeks, a 10-minute sit-down resulted in my left leg going numb, severe pain, as well as pins and needles (paresthesia). I moved again to a fourth doctor, who also looked at my X-ray and MRI, and everything was normal.

NUMB LEGS

Easter holidays, 2016, came, and I travelled home to Kericho via a flight to Kisumu. During the 85km journey from Kisumu to Kericho, my dad had to stop more than four times, so that I could stretch, as my leg was numb. I saw the fifth orthopedic surgeon, who did a CT scan, and it revealed I was okay.

With her brother DJ Crème.

I was put on Valium to relax my muscles and back pain, and the surgeon said there was an issue between the spinal discs L5 and S1, which was affecting my nerves.

End of April, the nerve pain had moved to the right side, so both legs kept alternating. At this point, we knew as a family that things were escalating quickly.

We contacted a neurosurgeon based in Eldoret, and I was scheduled for another MRI scan. We left Kericho knowing it was just a doctor’s appointment, and we would be back home in the evening. Shock on me, as the 45-minute MRI was being performed, I became numb from my waist downwards.

I had severe back pain, I couldn’t even stand up after the scan was completed. I had to be assisted, and I knew something serious was going on.

Finally, it revealed I had a disc bulge that was pressing on my sciatic nerve. It is the largest and longest nerve, from the sides of the spine to the legs. The doctor said they had to admit me, so that I could get a spinal epidural.

He suggested that this would relax my back muscles, and the disc would move back into the spine, reducing the compression of the nerves. I tried begging against it, as I never thought in my wildest dreams, I would be admitted in Eldoret.

But, I had to be left behind. It felt like I was being left in boarding school. That evening, I had the epidural, thinking after 24 hours, I would be pain-free. I woke up and I couldn’t feel my lower limbs. Day three, I couldn’t leave my bed; severe right hip pain, down to the buttocks and to the toes. I was in tears, scared, wondering what my life had turned into.

From a very active girl to being unable to move a leg. The doctors suspected another condition called sacroiliitis, and the only way was to get a sacroiliac injection, again, in the theatre. I was mentally prepared for it, as it is a very painful injection.

The sacral joint supports the buttocks and pelvic region. I felt better and things started looking up. Being away from Kericho, the distance never stopped my family from visiting every two days. I was hospitalised for 16 days. The final diagnosis was disc bulge and sacroiliitis.

I left feeling better, with tons of medication and physiotherapy prescription, and I knew I would be okay. If only I knew the battle that lay ahead.

I was on bed rest for three months and I returned to Nairobi, ready to recover and go back to work. I had started physiotherapy, which, I was combining with chiropractor.

Premier Wellness helped me with the rehabilitation. Though extremely painful, from the third session, I was able to climb stairs. I also had my first acupuncture with 37 needles, as my muscles were so tensed up. I did a total of 14 sessions, which included cupping, acupuncture and kinesiology taping. Anything to take the pain away.

I returned to work and slowly built up from working four hours to the normal eight hours. Unfortunately, I suffered a relapse shortly after, after lifting my niece, and I returned to Eldoret for admission. This time, for nerve root compression.

I was given the most painful injection I have ever experienced. It’s a steroid shot done at the base of the spine. It gave me pain relief for months.

In October 2016, I relocated to Mombasa. I still had back pains, but manageable. I had gotten used to living with pain. I was managing it with tons of medication. I knew I had to get an orthopedic doctor by the time I landed in Mombasa.

The weather was favourable to my health. Little did I know, it was short-lived. I got my 10th doctor, and things started escalating yet again. In early 2017, the symptoms came back with a bang.

The nerve attacks would be frequent, anywhere, any place. I’d feel like I’m being electrocuted from the waist downwards. Morphine and pethidine shots became the norm, but nothing was helping with the pain.

MAJOR DECISION

One day, as I was going about my work of fiber installation, an old campus mate suggested I see her father, who is an orthopedic surgeon, old in the profession, and he might just help.

I had given up seeing another doctor. Repeating the same story to 12 doctors and getting different opinions was a bit tiring. My body had conditioned to pain, and life just was about to change a notch higher. The 12th doctor read my MRI differently, and right away, said we had to save that nerve, and surgery was the only option. I froze. Spine surgery.

No way! My mind raced to all the scary stories I had heard, and I was willing to stay how I was. If I didn’t do the surgery, the nerve could be permanently damaged, the doctor said. He introduced me to my current orthopedic surgeon, the 13th doctor, who gave me a reason to smile again, with almost 60 per cent back pain gone, as well as nerve pain.

But before the surgery, I found excuse after excuse, work commitment, important family engagement, election uncertainty… then one incident happened while I was at the supermarket shopping. My nerve went crazy and I was rushed to hospital by a security guard.

That was the day I made up my mind. I was going to get that surgery. Many warned me, advising me to go abroad, but I soldiered on.

As a family, we settled for September 7, 2017. My orthopedic surgeon explained the spine surgery would be a unique one. It woud be done from the front. They accessed my spine from my lower abdomen, a procedure known as Anterior Lumbar Interbody Fusion (ALIF).

The herniated disc was to be replaced with bone graft and fused together with a titanium peek cage. The fusion occurred at the discs L5 and S1. The surgery was a big success and I came home in Kericho to recover, but it was tough.

There were hard days; days I was wondering if I made the right decision, but they say nothing good comes easy. I expected a three-month recovery period, and I would ease back to work.

My back pains reduced, my nerve pain became almost history. My God, Mary wasn’t ready for the greatest battle that was just two months ahead of her.

Late October 2017, my back pains came back. Louder. Severe joint pain started, knee pains, fingers, ankles… We thought it was the cold in Kericho.

All these years I knew cold affected me, and I’d keep warm and be fine. But this time! How do you wear two pairs of socks, and your feet are frozen as ice and white as snow? Something wasn’t adding up. I came for my post operation review in Mombasa and I couldn’t even sit down at the doctor’s office.

My buttocks were in pain, my back killing me, and my feet cold – in the Mombasa 28 degrees Celcius heat. Tests were ordered, full autoimmune profile, to rule out any immune system issue.

Anything that could unravel this mystery. The joints started swelling, fingers turning red and warm and my ankles too. The tests would take two weeks. It was the longest weeks, waiting for an answer.

LIGHT-BULB MOMENT

At that point I’m wondering, what is going on? Why am I not getting better? As we waited for the tests, one fine Saturday, my mother randomly asked me, “Murugi, what if this back problem isn’t just a gym injury?

What if it’s the issue you used to have as a child where the cold would make your joints ache?” At that moment I screamt, “OMG mum! What if this is related?” It was like a light bulb moment. I felt like I was in a movie theatre watching an old classical movie.

My back injury happened and we all focused on it. That day, we went down memory lane with my mum. She reminded me how since I was a child, ages four, five and six, I would get spiking fevers with no explanation.

Chest issues and colds were the order of the day. I used to have boils almost every two months up until campus. In Class Four, I went to Nyahururu to study and the cold was too much. My fingers would swell in July and we would call it ‘sausage fingers’. In Class Five, I had pain on my knee and hip, and running cross country was a problem, so I was exempted.

I was on a special diet that also included calcium. In Class Six, my eyesight went from normal to -2. As of today, I’m at -6.75. I was that girl with all sorts of special letters. I would complain of cold in the joints and in Class Eight, I did a Rhesus factor test to test for Arthritis, but everything was negative.

I started taking my first anti-inflammatory in Class Seven, to relieve pain. In high school, my knee would disturb me, and I had a knee support. I did another Rhesus and autoimmune tests, and as usual, negative. All through my life, I knew I was allergic to the cold, as my joints would ache.

The D-day of the tests results came, and before we discussed further, I told my doctor all this information I totally had no clue could be in relation. Yet again, all tests came out negative. Reactive markers, negative. But here is a girl in severe back pain, swelling, fatigue, and cannot even go down the stairs without her knees popping some loud sounds.

This is when he explained that from my history symptoms, I am a seronegative rheumatoid patient. That rheumatoid arthritis (RA) was there from the word go, hence the many sickness episodes I had as a kid. But, it was silent for 30 years and boom! November 2017, the aggressive disease struck.

DIAGNOSIS

The cause of RA and what triggers it is unknown. I sat in his office, first not shocked as I knew I had issues with the cold and thanks to Dr Google, I knew arthritis. Now what didn’t hit me then was I didn’t know there are actually many forms of arthritis.

Over 100 types, and mine was just among the many. It was broken down to spondyloarthritis (inflammation of the spine and pelvic joints). This explained the never ending back ache. So, I know when my symptoms are about to start, it starts with my back.

People mistake osteoarthritis and rheumatoid arthritis. Osteoarthritis is the wear and tear of the cartilage and largely affects the old. Osteoarthritis is not autoimmune (immune system errors). In rheumatoid arthritis, the body’s immune system attacks its own tissue, including joints.

In severe cases, it attacks internal organs. RA affects joint linings, causing painful swelling. Over long periods of time, the inflammation associated with RA can cause bone erosion and joint deformity.

While there’s no cure for RA, physiotherapy and medication can help slow the disease’s progression. Most cases can be managed with a class of medications called anti-rheumatic drugs (DMARDS).

I was immediately was placed on conventional treatment. This was the beginning of a life changing moment. From a back injury, to surgery and now to an incurable disease. I never questioned God why me? Because who else?

This is something no one deserves at all. I was in some type of shock, everything was happening so fast, and it hit me later on. The treatment wasn’t easy. To control RA, immunosuppressant are used, to suppress the immune system completely.

One of the medication used is low dose chemotherapy. I would take my weekly Methotrexate dose on Tuesday, and the side effects were nasty. Hair loss, teeth breaking, skin lightening and skin reaction among others. I would feel better for three days and pain comes back again.

My battle had just begun. The monster had just woken up, he hadn’t started destruction. In less than four months, my own system couldn’t differentiate a simple press, manipulation or cracking of fingers. It was mistaking it for an injury. I was now using Oxycodone for pain as it was too much. The RA was moving to my muscles, causing swelling when pressed.

A simple application of Fastum gel on my shoulder resulted in the shoulder looking like a golf ball in a matter of seconds. It is the worst kind of pain that I’d not wish on anyone. Pain that made lifting my hand to comb the hair impossible. Immediately, the next few days, I arranged to go see a rheumatologist in Nairobi.

A decision was made that I had failed on the first and second conventional treatment for RA, and now, I was to move to the last resort – biologics therapy. The aggressiveness of the disease needed to be controlled and and I started on Golimumab, Simponi, 50mg.

Biologics are the latest type of biotechnology drugs engineered in the lab using live organisms. I started on biologics in April 2018, and the injection is done monthly. It is a self auto-injector pen, meaning I get to inject myself. This requires bravery.

It gives me so much pain relief, but it’s so costly, ranging from Sh114,000-800,000, hence access is an issue. The tablets are likewise very expensive. I go for my reviews every month, as some inflammation markers are traced. Checking for any infection is mandatory when on biologics.

Currently my treatment involves; medication to suppress the immune system by binding the excess proteins (Simponi), disease modifying anti-rheumatic drug, anti-inflammatory, nerve medication, painkiller, gas inhibitor, as well as multivitamins – Vitamin D3, Calcium and Omega 3.

I go in every month for admission, so that testing is done before administering biologics therapy. If one has an infection, they cannot get the drug.

The drug being powerful, my side effects are to be monitored. From my blood pressure going up, excessive sweating, severe fatigue, migraines, nausea and fever. After the injection, I’m almost pain-free the whole month.

TREATMENT

My doctors say my RA is very selective. Every month before my shot, it attacks a spot. From nerves supplying power to the leg, making it extremely weak I have to drag it on the floor, to my hands going numb. Just because the body needs an injection. And immediately 24 hours after that, I’m usually like a new person. No pain.

The downside of this treatment that suppresses the immunity is that one is prone to infections and unable to fight colds. My immunity goes to as low as 3, and I have to be in isolation after the injection, because a mere cold, I cannot fight.

So, after my discharge, I keep to myself. No malls, no hotels, no eating out, no supermarkets, no visitors. I stay alone, eating fresh food, as I build immunity. I am managing almost 25 days minimal pain.

Daddy’s girl.

Simponi is giving me relief, but every aspect of my life changed.

I’m no longer able to perform strenuous tasks. Any small strain can be a trigger. I have to be very alert as the first month on Simponi, I had a scare where my temperature dropped to 33 degrees Celcius.

I now listen to my body. I walk with a thermometer in my handbag. I’m never sure what next. One symptom of RA is fatigue; my muscles ache and it’s not the normal tired. Hence, rest is more than important. I ensure I sleep eight hours, and on bad days, I do even 15 hours.

Not all days are easy. I have extremely bad days, when I cannot even pray, I cannot leave my bed, I shower seated, as pain engulfs me. An invisible pain. It is hard to explain when you just look okay and smiling. I still do physiotherapy, having done over 100 sessions in a span of two years. I avoid long distance travel.

I ensure I swim thrice a week to stretch my muscles. Since fatigue is automatic, I try to get regular hot stone massages and soak in a jacuzzi. Anything for my painful muscles.

I had to change my diet to include healthy meals and foods that have anti-inflammatory properties. I take a lot of ginger, garlic, and turmeric, eat less gluten, wheat, red meat, and more white meat. I take vegetables and fruits in plenty, especially berries and pineapples

FINDING MY PURPOSE

For any chronic patient going through such a time, one needs a strong support system. I am thankful to God I have the best support system. My life completely changed after the diagnosis. I lost many friends; I was no longer the partying out going girl.

Half the time we plan something with a friend, and my symptoms hit. On my own birthday, I cancelled all of a sudden. Many people will not understand how someone who looks okay, is ever cancelling plans, ever indoors. That’s the thing with RA.

It is unpredictable like the weather. I am thankful for my employer, who has walked with me every step of the way. I have never felt alone. My colleagues cheer me on and support me 100 per cent on my bad days. My friends and above all, my family, have been nothing but the best.

I always know on my bad days, there are people who hold me up in prayer, and are ready to assist. I was on medical leave for nine months and a month after my first biologic shot, I went back to work. It was the best day of my life. We take waking up and going to work for granted, until you are bed ridden, wondering when will you just get out of the house.

Life handed me this plate, but at the end of the day, we make a choice whether to be bitter or be better, and have a positive mindset. Despite monthly admissions and taking 15 pills a day, I choose happiness and hope. To keep fighting.

It’s a constant battle, but God never gives us what we can’t handle. I have a thankful heart that despite all these, I am receiving the best treatment. God has been faithful, were it not for Him, I’d not get this far. He gives me peace that surpasses all understanding. Going through this journey, I discovered a unique character about myself; resilience.

Daddy’s girl.

A resilient person won’t give up. Murugi won’t just give up.

When I started this two years ago, I was weak, but now, I have a purpose. This pain has encouraged so many, strengthens, and gives hope to those who have given up. Day by day, more and more people reach out for support on various issues.

I want my story to put hope to that one person who has given up, to that one person who thinks life has ended, because of a traumatic event. It hasn’t. You possess the power to rise from the ashes. Pain changes you. But for Murugi, it moulded her. It birthed a purpose. In this pain, I have found my purpose.

AT A GLANCE

Mary was born in Nyahururu in 1986. The family relocated to Kericho in 1988, where, together with her brother, popular entertainer DJ Crème de la Crème, she was raised. She went to Eland Primary School until 1995, then transferred to a boarding school in Nyahururu, Busara Forest View Academy.

She later joined joined St Georges Secondary School in Nairobi till 2004, and proceeded to Daystar University in 2005 to pursue a Bachelor of Arts degree in Public Relations and Marketing.

She is currently a project coordinator in the telecommunication industry, handling fixed data enterprise projects. She’s also pursuing her masters in Corporate Communication at Daystar University.

She aspires to write a book on her personal journey and living with rheumatoid arthritis, start a YouTube channel to walk with other people interested to know what the condition is all about, as well as start a foundation that supports patients battling chronic/ connective tissue diseases in the Coastal Region.

She is single, and her favourite pastimes are cooking, swimming, collecting books, reading and sampling various spas in Nairobi and Mombasa.

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