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.
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.
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.
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.
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.
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.