Life after death.
During adolescence I would tire easily and get sick on a regular basis, but it wasn’t too much of an issue yet. One day, I was renewing my license and had the usual eyesight check. It came to my attention that I couldn’t see very well out of my left eye. I immediately went for any eye test, the optometrist found that a had inflammation on my optic nerves and sent me to an ophthalmologist. I waited months and by this time I had a two sided piece of paper with me that I had written all my symptoms on. The usual; night sweats, all over pain, insomnia, chronic fatigue etc. etc. I got admitted in to hospital for a lumbar procedure to see if I had IIH. My pressure was a little high but nothing significant but anyway I left diagnosed with Idiopathic intracranial hypertension and that was that. It wasn’t. I’m sorry if this is too personal for some readers but it’s part of my story; I accidentally got pregnant to a man who was controlling and abusive, I made the painful decision of terminating the pregnancy.
After the termination I battled with severe depression and tried to commit suicide. My health deteriorated at the speed of light, I was in severe pain, I couldn’t sleep, I had RLS, migraines, night sweats and eventually was in a wheel chair. On the admissions to hospital I was always doped up and sent on my way, the diagnosis was “an acute flare up of a chronic illness” WHAT CHRONIC ILLNESS? After 2 years of agonizing pain and feeling as if I was crazy, plus being treated as if I was crazy, I was finally referred to a rheumatologist.
After 4 months my appointment was here! I was sure I would leave with all my questions answered and be miraculously cured. That wasn’t the case. Fibromyalgia she said. There’s not much we can do she said. See you in 3 months she said. Next appointment, let’s get you on steroids and do some more blood tests. 3 months later, your inflammatory markers are through the roof, let’s put you on endep, see you in 3 months. Next appointment, “mum can you please come with me today so you can tell her how bad I am doing?” Alright Francesca (me), lets start you on methotrexate and then we can look in to Anti-tnf treatment, it’s a miracle drug for arthritis and want to get you on it as soon as possible. She diagnosed me with Psoriatic arthritis. I left with my hopes sky rocketing, a miracle drug? Sign me up immediately. 3 months later, still in pain, we will add in Arava for 6 months and then see how you are. In the meantime, I’ll send you to pain management. I’m eventually on the highest dose of a fentanyl transdermal patch. The pain relief was amazing and I started being able to do some chores and get out of bed!!!! 6 months later, your inflammatory markers are still extremely high, I think we can apply for Anti-Tnf but first we have a lot of tests and screening to do.
In order to receive Anti-tnf treatment you have to have copious vaccinations and are sent for a chest X-ray to check for tuberculosis. I had the X-ray and 4 months later I get a letter saying, you have been booked in for a chest CT scan and no further details were provided. 2 months later I’m at radiology and ask why I was referred, they replied “has no one discussed this with you?”, I had a lump visible on my standard X-ray. 2 months later and it’s time for my rheumatology appointment! I was ecstatic! I was finallllllly going to get my miracle drug! “Ok Francesca, lets get you started on Etanercept, oh wait, this isn’t good, you have nodules throughout your lungs, I have to send you to respiratory before we can begin treatment”. I left in tears, why hadn’t she checked the results months ago and already referred me to respiratory?
After a drawn out process I got the all clear and the conclusion was that I also have Rheumatoid arthritis.
It was December 18th, 2015, I cried with joy, I finally was approved for Etancept! I finally got my miracle drug, oh what a miracle it is.
After 4 weeks of injections I was alive. I was alive for the first time in 4 years. I was able to walk 5 kilometers a day. I was back at uni full time and was out seeing my friends. I had my life back. I was able to make plans, plans!!!! I’m doing so great and even received a scholarship at university. As a bonus, the weight from steroids is dropping off me, I’ve lost 15 kilos so far and feel amazing. I promise you, from the bottom of my heart, there is life after death and it’s incredible.
Do not quit. Do not let doctors tell you it’s all in your mind. Fight, fight for your health. I’ll see you on the other side, there is light at the end of the RA roller coaster.