My name is Caroline. I am in my 60’s and have been retired since 2015. My husband and I have a large blended family of adult children and adult step children. My current claim to fame is that I have 14 beautiful grandchildren! In my working life I was a Deputy Principal of a large K-12 independent school.
I have struggled with autoimmune conditions all my life and there is a medical history of autoimmune conditions in my family. I had eczema as a child. During my late teenage years I was diagnosed with ulcerative colitis and in my 40’s I was diagnosed with an autoimmune, underactive thyroid during a bout of severe depression. I have always had unexplained rashes on my arms, face and back that would come and go, mouth ulcers and painful cracks at the sides of my mouth.
Around 10 years ago, I was diagnosed with a fairly large ascending aortic aneurism and a small pericardial effusion. I was also having issues with my lungs following a bad bout of whooping cough. My ANA reading was positive intermittently. I was sent to see a cardiologist who had suspicions that there was an autoimmune connective tissue problem underlying my condition. He wanted me to see a rheumatologist.
The first rheumatologist I saw re-ran my blood tests at a different laboratory along with some tests specifically for autoimmune conditions. The results came back largely normal. He said the previous laboratory had been “looking” for a positive result! I went away feeling that I needed to stop worrying that something was wrong and get on with my life. The aneurism and the pericardial effusion were just chance occurrences. I set out to reduce my risk factors of a serious cardiac event, lost over 20 kg in weight and I commenced taking a small dose of anti-cholesterol medication and blood pressure medication.
In 2014 I was diagnosed with Meniere’s disease following attacks of severe vertigo, nausea, vomiting, tinnitus and hearing loss. This disease can also be an autoimmune immune condition in some people.
2016 was a very difficult year for my family. My husband had been continuously on chemotherapy for over 3 years for an advanced, metastatic cancer and my adult son and daughter were also going through some very hard times. My stress levels were very high and I was regularly caring for both my husband and others in my family. I began to feel very unwell, extremely fatigued and awful pains all over my body but particularly bad in my lower back, hips, knees and legs. I had a nasty rash on my back. I went to my GP and she ran a rheumatology set of blood tests. Again my ANA came back at a relatively high level. She sent me off to see another rheumatologist as I didn’t want to see the one I had seen previously.
He ran all the blood tests again using a different lab and this time my ANA was 1:2560 which is extremely high and my double stranded DNA was also positive. He diagnosed Lupus and sent me away with a script for Plaquenil. At a subsequent visit he added Amitriptyline that treats neuropathic pain which was preventing me sleeping. These medications have helped significantly and during 2017 my health improved greatly. I also began swimming laps in a heated pool a couple of days per week to ease the pain in my muscles and joints as well as improving my overall fitness.
Currently, I am mostly feeling well. I still have pain in my hips, knees, legs and lower back. It is much better controlled but I still need to take pain medication sometimes. I need to be careful with my stress levels as this is a very real factor in worsening my lupus symptoms. I also try not to get overtired and to keep away from people with colds and flu as I go down hard if I get an infection. A recent, very bad bout of flu saw me requiring prednisone to help with my breathing.
The most important thing that I have learnt from my Lupus journey is that I’m not bulletproof. I need to exercise real self-care or I cannot care for my loved ones. This means I need to say no sometimes and stop before exhaustion sets in. My husband and I have a deep Christian faith and this gives us hope for the future whatever that may bring.
I wish you all well with your own Lupus journeys.
Caroline
