IT ALL BEGAN WITH A MIGRAINE...
I was 36 weeks pregnant with my second son when I experienced the most excruciating migraine, beyond anything I’d ever experienced before. My husband, a pilot, was typically away on an overnight trip so it was just me and my 2-year-old son Archie. I was literally bed ridden and all Archie could do was ask “mummy are you alright?” I’ve always hated to make a fuss and feel uncomfortable asking for help, but with the added complication of Epilepsy my husband finally convinced me to call a friend to take me to Emergency. It turned out I had meningitis! They didn’t know whether it was bacterial or viral, so they dosed me up on a ridiculous amount of antibiotics in case it was bacterial. I was in hospital for over 7 nights and made a very slow recovery given I was so heavily pregnant. It was then just 2 weeks later I was in the same hospital giving birth to Oscar.
It wasn’t long after giving birth that everything started to go drastically wrong with my health. I started to experience chronic dry eyes - they were always red, dry and sore. To the point I even had an eye operation, which to be honest didn’t end up doing a great deal. My skin also started to appear raised and red on my cheeks. I thought it may have been rosaria, but the doctors didn’t think so. I felt really self conscious all the time and no matter what skincare I was using it wouldn’t help. I went on minocyclone, but I had an allergic reaction to it where my hands blew up like witch’s hands so that was short lived. I just learned to deal with it and use concealer!
When Oscar was around 12 months old, I started to get stiff fingers. I went to my local GP and he just sent me away feeling like an idiot for even mentioning the word ‘arthritis’ given I was only 30 years old! If only he had listened and helped me then and there and not made me feel like a total hypochondriac... there is SO much I wouldn’t have had to endure these past 3 years if he had just referred me to a specialist.
Over the next 12 months the stiffness and pain started to travel to my toes, then my tendons started to be inflamed to the point I was getting pinched nerves left right and center. Since my GP had turned me away and made me feel so silly for complaining, I just dealt with it. I thought it may have been a food intolerance so decided to stay clear of gluten for while, but of course that didn’t work!
Later that year we decided to move from Australia to Dubai for my husband’s work. It goes without saying how stressful moving is, let alone an international move. My joints went from bad to worse very quickly. Once we arrived in Dubai I was struggling to even walk. I had to wear sneakers in the house permanently to help deal with the hard tiles. Holding the steering wheel was painful, opening a bottle of milk was impossible, picking up the kettle to pour myself a tea was impossible, doing up my sons buttons each day was a nightmare... you name it it was all hard. It was even worse when my husband would go away for longer trips.
I finally went to another GP who recommended I see an Orthopeadic specialist. He was excellent and straightaway he recommended I see a rheumatologist for testing. By this time, I was relieved I was going to be able to put a name to this nightmare. It came back that I had/have severe RA. For the past 2 years I’ve been on and off different medications trying to find one that best works, which has been a nightmare in itself. The side effects of some of the RA drugs are horrendous and makes you question even being on medication at all. I’ve ended up on Arava (20mgs per day), but was still experiencing random flare-ups at nighttime where climbing a staircase was near impossible. Clearly the Arava was working for most of the time, but for some reason I was having sporadic flare-ups. My rheumatologist recommended I got a food intolerance test to see if there was something inflaming my system I could avoid. It turned out I am intolerant to dairy, gluten, yeast, wheat and egg whites. It was one month ago I decided to go completely cold turkey on all the previous mentioned food intolerances and have not had a random flare-up since!! It’s been really hard to stick to, but it's been truly life changing! For the first time in my RA life, I feel like I’m working on the same team as my body and my system. I’m back at the gym and feeling stronger than ever.
My RA journey has been long and tough, and continues to be hard. I’m sick and tired of monthly blood tests, of monthly eye specialist appointments, of having daily medication for my RA, daily medication for my epilepsy, daily meds to boost my immune system and much, much more... BUT you must stay positive right? Thank God for amazing husbands, family and friends is all I can say. xx
Right now, what RA tips would most be helpful for you?