The Purpose

Hello Readers,

My name is Shayna and I am a chronically ill patient. I was diagnosed with Behcet's disease in April 2011 after a month of being sick with flu like symptoms and the development of a genital ulcer. I was a very healthy and active individual my entire life, only with the occasional migraine, stomach pain and constipation, skin problems, weak ankles and wrists and some nausea but who doesn't experience these things at some point in their lives? I never, ever thought that one day all of these little things would end up being clues to what the future would hold for me. My disease is extremely rare in North America and the UK, most doctors have never seen it in their time practicing. There is no known cause, there is no cure and I am expecting to have this for my lifetime. I am also expecting this disease to reduce my lifetime significantly.

Behcet's is classified as an autoimmune disease as well as a type of systemic vasculitis, meaning inflammation in the blood vessels, and since we have veins and arteries everywhere in our bodies, every single part of my body can be affected by my disease. If you look up Behcet's online, you will constantly come upon this 'Triad' of symptoms description which mentions ulcers, eye involvement and thrombosis in the veins. I luckily haven't had too much eye involvement so far in my journey, nor thrombosis, however I had gone through pretty much everything else in the 2 years I have been fighting it. My daily struggles involve arthritis pain in my joints; hands, wrists, knees, hips, ankles, back and neck, etc, GI troubles of all sorts, headaches of varying degrees from regular tension to aseptic meningitis, chronic fatigue, random heart palpitations, skin rashes and lesions, mouth ulcers and luckily only ever two genital ulcers, memory loss, confusion, organ pains (liver, gall bladder, spleen) nausea and vomiting  and always generalized pain and then I will have the odd periods where I will get days with phantom smells, seizures of different sorts, black outs, numb limbs, random falling, extreme pain and sensitivity, leaking nose, inflamed joints lasting 2 months, my ear will stop working, eye pains lasting 3 days, etc. I am sure I am forgetting things. My life is literally like a list of possible bad side effects on those USA medication commercials every day.

I am presently taking about 16-20 pills a day just to stay afloat and these are all the things that still happen despite all this medication. If I didn't take the pills, things would be way worse (I have tried!). I am planning on moving to the next step of treatment which is immunosuppresion, where they will shut off part of my immune system so that it will stop attacking my body and wait and see if it will improve the situation. Unfortunately this puts me at risk to catch many other illnesses and also sadly raises my chances of getting cancer later in life to an alarming rate. At this point, I don't really have a choice. If these forms of medication don't work, then we will turn to chemotherapy.

Now that you have a brief idea of what I have and how I live, I can finally get to the reason why I decided to blog about it. Naturally when a person becomes ill, the first thing they do is research to gather the most information they can on what they have, what to expect and how to get better. After two years,  I am still researching, still exploring, still looking for ways to get better, and ironically I am just getting worse and worse despite the more knowledge I have. Either way, I wanted to make a place for people to go to ask questions and find truth in experience after being diagnosed. The websites I was able to find were very dry, very to the point and more importantly, inaccurate. They did not prepare me at all for the journey I have been on over the last two years. I was expecting eye drops and blindness and instead I am now looking at losing my license because of seizures and organ failure. There is nothing online linking Behcet's Disease with this! How could I have possibly been prepared for this life?

The way I have survived through this challenging time is with the help of my social media groups on Facebook and now recently Instagram. These amazing groups have shown me that I am 'normal' even though it is now among a much small group of special individuals. Being able to simply type a question on Facebook after something terrifying happened to me and having 10 people respond, "yes, you're fine, the same thing happened to me. Here's what you should do. Stay strong." meant the absolute world to me. THIS is where I found my true knowledge, this is how to prepare for real life. Not Pubmed and Wiki articles some doctor or student wrote without ever living with the disease. These people are the experts, the professionals to turn to when you're having the worst flare, when you need advice, when you're unsure about a medication your doctor just prescribed, a side effect, a test result. They are the therapist I needed on my worst day because they've been through the ups and the downs too. When they ask 'how does that make you feel?', they actually want to know because they can compare it to their personal life story. Your friends and family can be by your side and support you, but there is nothing more comforting than the understanding of someone who is going through the same struggle along side you. 

This is why I want to start this blog. I want to and NEED to give back in a way that will touch, inspire and help people like I have been helped. I honestly don't know what I would have done without the human contact and the realness of it all. I want to share my story with my fellow 'spoonies', fighters, strugglers and survivors and maybe even open the eyes of those who wouldn't have a clue what this Invisible Illness is all about. This blog is about spreading awareness for all of us, sharing information, telling stories, discussing successes and failures, encouraging smiles and positive attitudes in the hardest of times to try and help us beat whatever it is that is trying to take us down. Not everyday will  be a happy one here, that's just not reality, but I will try my best to keep the balance.

I really appreciate you reading my blog and becoming a part of my journey. This is my first time writing a blog so bear with me while I figure out how this thing works :) This particular post was intense and slightly depressing and I promise you not all of my posts will be this way. I wanted to get all the facts on the table, clear the air and start fresh. Let's go!

-Shayna

http://en.wikipedia.org/wiki/Beh%C3%A7et's_disease