My name is Vee Celeste, and I have spent my life being a pincushion, a target for sympathy and scorn, and a sick kid. I’ve been in multiple support groups since my mid teens as a forum to vent my rage over the fact that my body absolutely hates me. Someone said that blogging had really helped them get through the anger and the disappointment of being sick all the time, so here I am, writing into the void that is the WWW in the hopes that something might click and make my life go back to being rainbows and unicorns, much like it is in the fleeting happy moments between having to go through another diagnostic process to fix another set of symptoms that have come along to make my life hell.
Whilst there are many lovely stories about my unidentifiable health issues as a child, my journey mostly started as a depressed and anxious teen who went through the joy that is the diagnostic process for Poly Cystic Ovarian Syndrome (which predominantly involved ruling out a million other conditions via a million tissue samples). Fortunately for me and my role as the continuous victim of crappy evolution, I was instead diagnosed with non-salt wasting congenital adrenal hyperplasia, a joyful autosomal recessive disease that means my endocrine function is completely naffed. One of my favourite things about CAH is the promise that I can once more turn into a human pin cushion if I ever want to have children, but safe to say with the prospect of handing an innocent little human my genetic loading for multiple diseases and health conditions, combined with cancer causing hormone treatments that don’t 100% guarantee a baby, I’ll probably pass.
But why this blog, and why now? Well, after having various gastrointestinal problems my entire life, I am now going through the process of being diagnosed with coeliac. On it’s own that’s not so bad right? If only it could just be some piddly little auto-immune disease managed by diet. The morning of one of my closest friends wedding, I presented to the Emergency Department with acute pain in the right upper quadrant of my abdomen. After blood tests for cholecystitis and appendicitis, combined with some much needed anti-nausea and pain medication, I was sent off to enjoy the wonderful celebration of love. Two weeks later, after a GP appointment and an ultrasound, my gallbladder and appendix were fine, however my ilium was a complete wreck and looked similar to scans seen in patients with inflammatory bowel disease. At this point we come to the purpose of this blog. Now combined with continuous anger, I have this deep sense of fear that I’m going to be put through some procedure that I can’t handle. The word ‘stoma’ has been thrown around in support groups a few times, and as someone brought up in a reasonably materialistic family full of models and artists combined with going through a degree that opens your eyes to just how poorly society treats people with visible illnesses, there are just some things I don’t think I could adjust to living with. I have it so much better than most, but I don’t think I am as strong as I always thought I was.
So here we go. Let’s see what life has to throw at me from here on out.