Steroids nearly killed me
Pamela Dube | Friday June 11, 2021 14:24
My daily struggle with debilitating pain has my mind messed up that I want to go into all joints of my body, suck out every frozen cracked fluid and breath back in fresh new fluids.
Imagine a home where there is a constant battle, the husband and wife throwing every gadget on site to each other, bleeding to the point of collapse. Time and again the neighbours come in to calm the storm, but the relief is short lived. That is my life, in my battle against RA.
Rheumatoid Arthritis (RA) is an autoimmune disease which attacks the immune system to the point of depleting white blood cells.
It thrives in a stressful environment. I describe it as “my body eating itself up”. What happens is that my defence line cells mistake white cells for an enemy, so when they meet, fight ensues. My body is a battlefield.
The result is the immune system collapses, and the fluids in every joint, freezes, creating crystals that once you stretch or move, they rub against the ligaments and inner bones.
Those who have followed my writings both on the mainstream and social media spaces will recall that I have written about my condition and the daily struggles. But what I have not shared is that the disease on its own is not life threatening, one can die from the medication.
When I started feeling unwell back in 2011, for a while doctors could not diagnose my condition. For over a year, I went through multiple tests but nothing popped up.
It all started when I was the editor of The Voice newspaper. Then I reasoned that the excruciating pains and stiff joins arose out of exhaustion, the stressful weekly deadlines. When it became intense, and I started struggling to rise from bed in the morning, and in cold days, moved with so much difficulty, I threw in the towel and resigned.
As I had no stable income, depending on freelance sub-editing and proofreading work at The Gazette, and Dikgang Publishing Company (DPC), I could not afford medical insurance. This led me back to public health, a place you do not want to be when you are living with a debilitating pain with no answer to what is eating you up.
I was exhausted and sliding into depression. It was that point of giving up that a cleaner at Thamaga hospital ‘diagnosed’ me.
I was walking, on crutches, out of the consultation room with a rude Congolese doctor, holding test request form for HIV test, when the lady known to me as MaRazool called me over.
She took my hands into hers and declared: “mogadibo mo ke ramateke wa madi”. What? Arthritis of the blood? What is that? I went back into the doctor’s room and told him what the cleaner had just told me, and he was angry at me for taking medical advice from “nobodies”.
A few days later, I walked back into the doctor’s room with the results showing that my uric acid was very high. I had a serious autoimmune disease called RA. Instead of apologising, he put me on steroids. The tiny white pill, Prednisolone, was like magic pill.
I increased and reduced the intake depending on the level of the pain. In a short space of time, I put down the crutches, and I returned to work, at DPC.
But just as life was getting back to normal, I started experiencing other symptoms. Although now managing the pain and the swelling, there was constant throbbing headache, and I was gaining excessive weight. I had always been thick, but from 75 kg to skyrocket to 110 kg was concerning.
My face was ballooned. I had developed Cushing condition, I had bruises all over and had ‘moon face’. I looked weird, so much that one ex-friend (yes she is gone forever) remarked “o kare o ka tamoga (you look like you about to burst”.
That hurt, but not worse than the niggling knee and back pains. I also started experiencing what I knew were diabetes symptoms, the disease that stole the lives of my mother, grandparents and aunt.
In fact, the midst of this, my mother passed away, and the stress levels shot up, so did the uric acids.
I was back on the crutches, as I walked with difficulty. Then after many months of some pharmacists refusing to fill up my steroids bottle (the doctor would prescribe one tablet a day, but I was taking up to six depending on the pain and stiffness levels), a private doctor in Francistown insisted I stopped the steroids immediately. Big mistake.
Three days later, I fell into a coma and woke up hours later at Tati River Clinic. With my insulin levels dangerously high, the doctors put me on diabetes medication, and back on Prednisolone.
Dr Mompati, the parent he is, told me what I already knew, that the steroids would kill me. But at that point, I was so dependent that stopping them was risky. That was 2013.
So for the next six years, I kept pumping in the stuff, with the diabetes out of control. I became a regular at Bokamoso and Gaborone Private Hospitals, with all kinds of ailments, mainly due to my diabetes. My health deteriorated to the extent that when my three-year contract as chief sub-editor at DPC ended in 2018, I packed my bags and headed home.
Then three months into semi-retirement, my GP, Dr Mbuwana, referred me to a physician at GPH. Enter Dr Chiguye. On the first day, as I was relating my sordid story, he stopped me abruptly and said “yes I hear you, but RA is not your main problem right now. You are drug dependent…” The doctor told me I was a drug addict, legally, and that I had to go ‘cold turkey’.
Now I had dealt with a drug addict, who had been in and out of rehabilitation. I knew what withdrawal symptoms looked like and did to the patient. It was not a sight to behold, and I was not prepared to go through that dark hole.
But in Dr Chiguye I had met a no-nonsense man. “You do it, or you leave my office. But you should know that not cleaning up, now, will lead to death.”
Not only was I living with debilitating pain, but my diabetes levels were dangerously high at 24 at worst, and 17 at best (which is too high on its own). I was a walking corpse.
I agreed to the regime. From the six tablets a day, I had to drop one each month. It was gradual detox. Easy, I thought.
Not so. By month two, I was a mess. I had to deal with bouts of nausea, diarrhoea, persistent headaches and loss of appetite. From April to September 2019, I was hospitalised eight times. My weight was dropping dramatically, and the knees felt loose, so much that I was on and off the crutches. On arrival at doctor’s offices or hospital I always asked the security to push me on a wheelchair, as it was too painful to walk distances of 100 metres.
But it was on my last ‘rehab’ hospitalisation that the nurses realised my glucose was down, and the doctor decided to stop the diabetes medication, as it could take me to the other dangerous end. I have not taken any since. I remain cautious though as I am borderline diabetic.
But the steroids had done more damage. In addition to the RA which I was still battling, there was wear and tear of the cartilage. I now had Osteoarthritis. The steroids had also ‘eaten’ bones, making them brittle and easy to crack.
On December 13, 2019, I went for my first knee replacement surgery. My left knee is fixed but because the right one, as well as shoulder joints were affected, I still struggle to stand and walk unaided.
The winter period is the worst. Everything freezes, and every move of any joint, knee, shoulder or finger, leads to excruciating pain, grinding, even a pop start, and swelling. Daily hell. On worst days, I am tempted to call in at a pharmacy and grab the magic pill. But I know best. It is a struggle for life. Getting about is a challenge. Basic things like driving, walking, shopping or even pulling off a jersey are challenging.
But I refuse to bow out.
I am getting busier than ever. For me the silver lining of COVID-19 is getting technology work for us. Now I can do most of my work online.