My Story

Well, I guess I can start way back when I was twelve years old.. wow.. makes me feel old now.. I was at a intensive sport camp when a massive headache/migraine came on. Five days later I make my first of many trips to my local children’s hospital ER. Some of the many speculations was post concussion syndrome, dehydration, encephalitis,or the big one… a brain tumor! Yes! thats right readers! Well, the CT clearly rulled that out or I wouldn’t be writing a blog on chronic pain.. but that also put me in the awkward situation of all medical tests coming back negative..and doctors having no clue whats wrong. Over the next 4 years I tried 13 different types of medication, and many specialists including naturopaths and osteopaths, neurologists, ER Physicians, Physiotherapists and ophthalmologists . Finally in 2011, my neurologist gave up and sent me to the ominous Paediatric Pain Clinic..[ she had this crazy distorted view of the pain clinic that held me from treatment but that’s another story for another day].I had a world class pain physician at the paediatric pain clinic where I live, The clinic had a very full sided approach. There was a psychologist, physio, pain specialist and the clinic nurse. I found it very comforting to have such a multi disciplinary approach. I stayed in the paediatric pain clinic up until September 2012. In 2013 I was diagnosed with IBS, and I  had a severe medication reaction that I am still dealing with over two years later. In 2014, I was diagnosed with a Arnold Chiari Malformation of 6mm and have been thrown into the diagnostic process all over again with a new physician.

I’m now I’m 20, switched to the adult system and living every day with chronic migraines, and trying to navigate the health care system! . Some days I cry, some days I laugh and some I can’t even get out of bed, but I keep living my life to the best I can, and enjoy every possible minute I can

 

Pain or no pain, we aren’t defined by our illnesses, we are defined by how we live our lives ouside of the hospitals, doctors appointments, and pills, because in the end we all have a small part of our lives that hasn’t been affected by our illness, and that small part is what we need to live for.

 

2 thoughts on “My Story

  1. So sad you had to endre a route that I also had to travel has well – my migraines started at 12 for other reasons, I would self injure (kids these days cut, back in the “olden days, we beat out head against walls and also punched them) they didn’t find my tumor until 2 yrs ago though.They tell me the tumor isn’t causing the migraine, just the most uncomfortable second adolescence – my boobs have grown now 6 sizes greater then what they were to begin with – (34DD). Now I have the tired shoulders of someone with 34HH or I boobs. What fun – not. I have several other problems as well – keeping positive is not my forte’, as I have have been dogged by the heath system and doctors one too many times. Im going through ore of it now. Best advice I can give – don’t ever give up fighting for yourself. If you give up – they give up. And that means that no one will be out there in your corner!

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