My Story Angela

I’m 55 years old and live in Waikanae, Kapiti Coast with my supportive husband Glenn and my three cats. I have not been able to fly to see my relative in the UK for 3 years and I miss my daughter Katie who is 28 and has a successful career and my parents who I phone all the time to see how they are.

Not sure when my Lupus first started, but have been ill for many years prior to my diagnosis in 2013, with positive ANA test and positive DS-DNA. My first positive ANA test was in in 2008 after I had my first blood blister form on the roof of my mouth; I was told by my doctor that many people can test false-positive and no follow ups were done after that.

The first photo is of me 10 years ago, the second is when I was diagnoised, the third is the mouth blisters that gave me my first ANA positive test result.

I’m so glad we moved to Kapiti where I visited a new doctor who took what seemed like thousands of blood test. When she told me the result I had never heard of Lupus or Autoimmune, so I asked her what should my husband Google, she said SLE. When I got back into my car I looked it up on my phone and cried, it seemed so awful a disease to be diagnosed with. My mother has suspected fibromyalgia and my sister has ankylosing spondylitis, so we now know which side of the family we get it from.

I have since tested positive for thyroid antibodies, my thyroid TSH test were never within the hypothyroidism range, but they were either very high or very low. My doctor thought to test for antibodies to see what was really going on. He believes my Lupus is now attacking my Thyroid and I now take Thyroxine, hello weight gain! My Lupus nurse was surprised they had not bothered to test my Thyroid and said that it probably causes 90% of my issues, thank you for NOT being so thorough, so I won’t be bothering with hospital visit again.

To add to the mix I have degenerative spine with stenosis and spondylolisthesis, plus my S1,L5,L4, and L3 in need of a spinal fusion with rods. I have recently had a laminectomy to remove spine bone to allow the spinal never to move more freely after the sciatica, a nerve being trapped for two and half years. Still convalescing and finding it hard to imagine a second operation where Lupus makes you recover more slowly than a normally fit person.

I have given up working full time and now work from home doing website building. I miss the work environment of chatting to people and getting dressed up.

In the past I have had two divorces, moved countries twice UK to Cyprus and then onto New Zealand. I had a brain haemorrhage whilst giving birth at the age of 27 and now partially sighted. Had an epileptic fit whilst out visiting a customer due to fluorescent light. I’m now menopausal, constantly anaemic with normal iron and B12 levels. I have chronic calcification of both shoulders, which are so bad the lady doing the X-ray shouted out ‘OMG I have never seen it that bad!’ I can no longer lift my arms some days to do my hair, lift a saucepan full of water and sleeping is very painful. My feet are also painful, not sure if it’s due to Lupus, spine nerves or Raynaud's syndrome, but I no longer wear beautiful shoes and can’t walk with the burning pain for more than 15 minutes. As for my bowels, I was diagnosed at the age of 19 with IBS and was told never to have anything that involved cow i.e. grass they eat, milk they produced or beef. Funny that now it’s the norm to reduce Gluten, Dairy and Beef in your diet, back then there was no diets or foods on supermarket shelves.

My dietician has said I most likely have Leaky Gut Syndrome and need to repair myself with restrictive diet and added enzymes. I am now with her help off Gluten, Soy, Dairy, onion, garlic and Nightshade vegetables. I have re-introduced cheese (I love it) and probiotic yogurt. It takes time she keeps telling me, but I hope it makes me better. I will then re-introduce foods one at time to see which ones are the true offenders.

I take each day as it comes, and live constantly in a tired state. I have sat here this morning trying to decide which tasks I can do with my energy level today. Sitting down to write this before I do anything else seemed the best option, then I will make a list and choose which one is more urgent and then see how I feel and decide on the next and possibly the next task. I found an article a year ago about the ‘The Spoon Theory’ and it’s the best explanation I have read about autoimmune disease lethargy.

I would like to wake up tomorrow, after they have found a cure and be my old self again, someone who was always on the go, bubbly, positive attitude and ‘living life to the full’ as once described by someone I knew in my old life. I feel for my supportive husband who has to listen to my aches and pains discussions every night.

By writing and building this website I hope we inspire more people to donate to the finding a cure for the millions who have autoimmune disease all over the world. Or help one person to fully understand their new disease in New Zealand.