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My New World

August 1, 2012

I’m 34, I’m married I have a gorgeous little girl and have been recently diagnosed with uveitis.  I’m writing this blog as a diary to record my thoughts as I go through a bit of a scary time with hospitals, drugs and the threat of losing my sight.

A Potted Recent History

At Christmas I got a lovely new DSLR camera and using it soon became a hobby I was really enjoying.  In April, just as I was getting to grips with it and starting to get a bit more creative I noticed that whenever I looked through the viewfinder it was as if vaseline had been smeared over the lens.  This really annoyed me, it wasn’t a cheap camera and I was convinced there was something wrong with it.  A few days later I noticed that everything was looking a bit cloudy when I closed my right eye. I realised the problem wasn’t the camera, the problem was my left eye.   As my friends and family will know, I can be a bit of a hypochondriac, I was always having aches and pains and always jumped to conclusions (usually wrong) about my health.  I convinced myself I had something seriously wrong, others brushed it aside and tried to convinced me I didn’t.
No matter, I went to the local opticians for an eye test, I probably just needed glasses or something and I hadn’t had an eye test for about 10 years so it would be worth doing anyway.  The optician spent a LONG time looking at my eye, she ummed, she aahed and then she told me to get straight down to eye casualty as it looked like I might have a detaching retina (that didn’t sound good).   It was my daughter’s 5th birthday, all plans of making the house ‘birthdayafied’ went out of the window and off my husband and I went to the hospital.
I won’t go into every detail from here, suffice to say I have been in and out of eye clinics for the past 2 months.  I have had countless blood tests, dye tests, scans, electrode tests and things stuck in my eyes. I have been poked, prodded, injected and everyone has been absolutely lovely whilst doing it.  I have grown a new found respect and understanding for the NHS.  I have been diagnosed with an immune system disorder (and am still in the process of being diagnosed) which is causing me to lose my sight.  It’s called Uveitis and I was told yesterday that if I don’t start an agressive regime of steroids on Friday I risk losing my sight forever.

I have always found writing down my feelings therapeutic and so I have decided to start writing this blog to help me deal with the lifestyle changes I’m going to have to make.

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From → Uveitis

4 Comments
  1. jenny k permalink

    Heartfelt open and honest writing and well done on not wetting yourself, like so many others before you! Looking forward to sharing your journey with you, as always. J

  2. Your story sounds eerily familiar to mine. I’m almost two years in and still don’t have more of a diagnosis than “some kind of autoimmune disorder… possibly lupus.” It is frustrating and scary. I’m currently recovering form my fourth uveitis flare, this time only in one eye instead of both, thank goodness. I’d love to compare notes and look forward to following your journey. If you ever need a friend in chronic uveitis, feel free to email me! (belle.hineman@yahoo.com)

    • Yep, that sounds like my diagnosis “We know it’s an autoimmune disorder but other than the uveitis, we might not ever have a name for the condition…”. My uveitis is in both eyes quite badly apparently, but I can’t notice it in the right. Basically was told will lose my sight if I don’t take prednisone NOW! Thank you for getting in touch, it’s helpful to know of someone else going through the same x

      • Hang in there. I promise you it gets better. Do what your doctors say and be kind to yourself. I HIGHLY recommend finding a stress relief or “yin” yoga class to go to. It has helped me a lot. I’m heading back to mine this week as the stress from all this has given me a chronic headache that refuses to go away no matter how many drugs I throw at it. I’m keeping you in my thoughts.

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