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.
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.