Hello there everyone 😁
I do hope you're staying safe and remaining blessed despite the hardship of the day.
I'm new to here, but have been a ten year sufferer of lupus, struggling most of that time to get medics and the public to be aware.
It started after a wonderful 15th birthday party. A few weeks later I was back to school for year 11. I had received student of the year, along with a host of sporting trophies, art and music shields and was playing sport and music at an international level. I had it all going for me! And it came so easily to me. I loved life, every moment! I was self assured and optimistic.
Then late one evening in September whilst playing field hockey 🏑 I suddenly felt ill. My heart ❤️ had turned cold, I was nauseous and threw up several times whilst playing and my eyesight was hazy. I got home and slumped to bed, thinking it was another one of those days, as I was frequently unwell as a kid and had the worst attendance in school despite being top of my game.
The next morning my legs and arms felt like lead, my joints burned and I felt freezing. I had always had a butterfly shaped rash on my face since I was a toddler, and my parents said it was the Yorkshire air, but now it hummed red without activity.
My eyes dry, my throat dry, and sick, my stomach wouldn't settle, everything ached, my head and ears rang, and my normally intermittent blue peripheries due to childhood Raynaud's, were blackened.
Fast forward, and I didn't improve, I walked into hospital one evening, and in and instant I was admitted for four months, with multi organ failure, and frostbite of my peripheries. I was told I would die. This was a rare, systemic chilblain lupus, that only three families in the world have ever had. No treatment, just wait till the inevitable. You won't live till your 16.
I lay awake every night in that hospital, the moon looked so big, on the 13th floor of the hospital. And the nights were so very long. I would chat to God though, every night, and every night he would comfort me. Then one night, after my hands were rebandaged upto my elbows, as they were each morning and night, I looked up to the night sky, and I made a promise to God.
"If you let me live Lord, if you give me these hands Lord, I will never stop to do your will. I will study hard, I will work tirelessly to help others and make sure no one with any disease ever feels alone"
And God made a way.
The next day, I could feel my hands, pain, but I could feel them and slowly after a month I didn't need the bandages anymore. I had each digit on each hand and I could roughly feel things.
My kidneys and liver and heart improved enough to go home a week before my 16th birthday. Though everything had changed. It was not plain sailing.
I had been expelled from school on health grounds and not allowed to do my exams. So without any qualifications I applied to college. I was placed on probation for three months, but at the end of those two years I got the highest grades in my year.
But because of medical school guidelines, heavily using GCSEs as a marking tool to determine entry I was denied from all medical schools and told not to reapply. Instead I went through clearing into Newcastle University and studied biomedical science.
After I managed to gain a 2:1, and applied with no success again for medical school I worked in a care home in South Wales. I loved caring for others, but was at a loss that I could not help them fix their current predicaments. I learnt alot there, and the value of a good death, and how powerful and reassuring that can be for the individual and the family involved. I also got hit by sepsis like a number of folks in the home but luckily I awoke three days later much improved but with alot of missed calls.
I felt however the drive to do medicine still pulling me so after applying again I went abroad to eastern Ukraine, to a city only a couple of kilometres short of the combat line and studied in the military hospital there. But whilst there, with tensions growing, and fearing I may not finish the course, my direction suddenly changed.
I was sat in the Russian orthodox church, as I did, most Sundays, and was reciting the creed, when a vision or a premunition took hold. There I was, with a new born baby, people saying my name and referring to me as a PA whilst I donned a pair of purple scrubs.
Well I skidded on the ice home that day, falling into a pothole and eventually making it back home. I googled PA in medicine and so came the term Physician Associate Aberdeen university.
Within two months of leaving Ukraine at the end of the term I had gained a place in Aberdeen for physician associate studies. A two year intense programme to become a PA, to work, diagnose and manage like a doctor. It seemed like a dream.
Well, still struggling with the brain fog, arthritis, fatigue and memory issues alongside another course proved difficult at times.
Especially when during the final year whilst going to placement I blacked out at the wheel and awoke to a smashed car on the side of the road. I then had some blackouts and seizures at work, and was struggling to do simple arithmetic, reading and writing, and my right side seemed weak.
Despite this, I managed to pass my university exams and national exams and began work as a PA. A miracle of many when a result of an MRI head scan done at that time had shown a large lesion over the left parietal and temporal lobe which had haemorrhaged. So I managed to pass my exams with literally half a brain.
So, to take you to now, I am a qualified PA working in emergency and soon to be working in neonatal intensive care. I started my first lupus medication two weeks ago after ten years of no help. It has been hard, and people say each day, why don't you come back when you feel better, when that is not the reality for us. We have to persevere.
Next week I have many scans to check if anything on the left side of my brain is salvageable and still working and to check that my brain isn't continuing to hemorrhage.
Yes I get frustrated, yes I am in pain, yes I am not as bright or able as I use to be. We can all relate I bet to these things. But, I hope and pray that we as a group, don't give up completely. Many times I nearly have, but I am still living proof that we can still conquer tough things despite our challenges.
God bless you all, Lottie x
Newbie, awaiting rheumatology and urology...
Undiagnosed Newbie!!
WHOS' AFRAID OF THE BIG BAD WOLF
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