After the discovery that I may have a disease that had triggered my uveitis, I had a blood test done and had to wait a week for the results. The world and its dog told me that the test would be fine and there would be nothing to worry about. Deep inside I had this suspiscion that there was something seriously wrong with me because I'm the one who lives in my own body and I just didn't feel RIGHT. For eighteen months including my time with my ex, I had started to think that my body's inability to be well was all in my head. My ex seemed convinced that I just wanted to be ill and he was bewildered by my sudden funny turns that would have me taking to my bed. Still, I listened to everyone's rationalisations and I believed.
When they explained what uveitis was, they also explained that it may have been triggered by sarcoidosis, Crohn's disease, rheumatoid arthritis amongst other autoimmune diseases. All rather scary words that I was shocked to hear being associated with me.
When the blood tests came back they indicated that there was a high level of an enzyme in my blood that indicated the possible presence of sarcoidosis in my body. 'But don't get worried and don't go trying to read up on the internet!' my doctor advised me sternly. This particular enzyme is considered to be an indicator of there being a problem when the level is 52 and above. At the time of my first blood test the enzyme level was over 100.
I was sent for a chest xray and told to come back in a week. In the meantime I was putting steroids in my eyes once an hour because the uveitis was so bad. I had to set the alarm on my phone which no doubt drove my colleagues insane. I hate putting stuff anywhere near my eyes never mind in them, but I became a pro at using drops. It just became the norm.
I restrained myself and only looked on the internet once and to be honest, the shock at reading what sarcoidosis was all about was enough to stop me reading.
I went back to hospital the following week, and friends and family had once again convinced me that this time it would be good news. It was bad news. I had sarcoidosis and was referred to the chest clinic at North Middlesex Hospital (where I was already seen for my eyes) and advised repeatedly not to panic and that at least they had found it. The xray of my chest didn't seem to mean much to me, but they said that my chest was full of shadows where the sarcoidosis had showed itself around my heart and lungs.
I went numb from the shock of the diagnosis. I was asked whether I had found any lumps in recent months. I mentioned the finger (I had found a lump in my finger a few months before and pushed it to the back of my mind) and they asked if I had found any elsewhere. A quick check of my left arm revealed more and I decided that I'd leave further discoveries for when I was alone. He listed other possible symptoms such as night sweats, the malaise, tummy aches, etc and I nodded through blurred eyes. He explained that my body's immune system was back to front and pretty much attacking different areas. The chest xray revealed a chest full of shadows from my lymph nodes and the mention of my chest being full of shadows was rather scary.
I have never felt so scared in all my life and I've had some scary moments. I went home and cried my eyes out but somehow forced myself to go to work as normal so that I could pretend that I was still normal. When I explored my body I found lumps in my neck, my back, my thighs, my groin, my face and even suspected that I may have some in my head as I'd had a persistent twitch at the back of my skull for months. Every day I found a diferent lump until I eventually stopped looking. I was 26 years old and suddenly life didn't seem so simple and I couldn't take it for granted that I would be a normal twenty-something. As I soaked up everything I could read online, I realised that if I didn't get a grip on this disease, my quality of life, my ability to do basic things would be seriously compromised.
