The Diagnostic Wilderness

"It is during our darkest moments that we must focus to see the light" - Aristotle

It is impossible to know how you are going to react to a piece of news until you are actually there in the moment. Try to imagine that you have just been given a piece of really sad, life-changing news. How do you think you would react? What would your emotional state be? 

When my doctor first told me that I had a chronic and incurable autoimmune condition my first reaction was not what you might expect.....I was really happy! Finally, I knew what had been going wrong with my body for the last 25 years. My illness wasn't all in my head; it was real! 

I had been regularly going to see GPs and hospital consultants since I was 5 years old. All of my health issues centre around my gastro-intestinal system and urinary tract. I regularly suffer with urine infections, excruciating stomach and back pain, nausea and and vomiting, diarrhoea and constipation, fatigue, dizziness, headaches and low grade fevers. The same symptoms would suddenly flare up and then after a few weeks/months they would disappear. I had several very bad spells where I was continuously ill for many months (age 6, 17, 23, 34, 38, 40 - 41).

My doctors were completely stumped. They ran and repeated multiple tests (countless blood/ stool/ urine sample analyses, Coeliac and Crones disease tests, ultrasound scans, x-rays, barium meals, CT scans, MRI scans, cystoscopies, sigmoidoscopies, colonoscopies, skin biopsies) and none of them showed anything wrong with me. In the middle of all the testing my illness would inevitably disappear again and the symptoms would be chalked up to "a virus" or Irritable Bowel Syndrome (IBS). I would be given some advice on my diet and a list of foods to avoid. 

A few years later the same symptoms would return, I would wind up in A&E with excruciating pain and the whole testing process would begin all over again.

In terms of other diagnosed health issues I had a stubborn patch of psoriasis on my scalp and in my 20s I was diagnosed with autoimmune thrombocytopenia. My doctors seemed completely unconcerned by these autoimmune issues and so I didn't worry about them either. When I was pregnant with my daughter things started to go wrong in my third trimester; my blood pressure sky-rocketed and there was protein in my urine. I landed up in hospital with pre-eclampsia and my daughter was induced and delivered two weeks early. As it was a pregnancy illness nobody thought to consider whether it was part of a wider autoimmune illness.

It was in my 40th year that things really started to change. The periods between my getting sick seemed to be getting shorter and I was getting flu-like illnesses with fever and muscle pains more and more frequently. The stomach and back pains became constant and I was getting arthritis pains in my hands, wrists, elbows, knees, ankles and feet. And there was the Malar rash (the bright red butterfly shaped rash) plastered right across my nose and cheeks.

In March 2018, I walked into my GPs office and asked, "Do I have Lupus?"

Ten months later I finally had the answer...I do have Lupus (SLE).

It might seem odd to find joy in receiving a significant medical diagnosis but I had already known that I was sick. I have most likely been living with my autoimmune illness my whole life but because no doctor had put a label on it I couldn't receive any treatment. For years I had been made to feel as if I was a hypochondriac or 'imagining it' simply because the tests my doctors had performed hadn't shown anything to be wrong. It was the same at work - the doctors can't find anything wrong so it can't be a real illness. It had never occurred to me that the doctors had been asking the wrong the questions and therefore performing the wrong tests. My diagnosis was the evidence that I needed to prove to myself and the world that my illness was real. I really was sick!

The quote by Aristotle is particularly relevant to my diagnosis journey. I have had many dark moments during my periods of illness, times when nobody could tell me what was wrong with my body and there was no treatment available to help me. Things might have been exactly the same right now if I hadn't set myself on a new path, one which ultimately led me to figure out for myself what had been going wrong all this time.

I guess the lesson is not to give up on yourself! If you can't find an answer in one place, try searching in a different one.

The first cut is the deepest

- Cat Stevens

On Thursday I had another biopsy of the rash on my shins. This is the second biopsy that I have had in the past year. The aim of these procedures is to determine what kind of rash I have and whether it is caused by an auto-immune condition.

The first biopsy was taken on two scabbed over sores on my right leg. It was a very strange appointment because when I first walked into the procedure room they wanted to perform the biopsy on my arm. It caused a mild panic when I told them that I had never had a rash on my arm. To compound the problem the doctor who ordered the biopsy was not around that day. Finally, they dragged in a flustered looking dermatologist who gave me the once over and decided to proceed on two scabs on my right leg. Looking back on it I probably should have walked out at this point. It was clear that nobody in the room had the slightest idea what the purpose of the biopsy was. I didn't walk out though; I just let them punch two holes in my leg and stitch me up.

A few weeks later I received the results letter in the post. The letter was written in the usual medicalese jargon that only somebody with ten years of training can truly understand. After much translation I can sum up the findings of my biopsy as follows: I have a scab on my leg.

There was also a note from the dermatologist restating that he had requested the biopsy in my arm.

I promptly called and cancelled the follow-up appointment.

Fast forward nine months and was sitting in a consultation room with a Bechets specialist. The Prof looked over my notes, rashes and all the pictures that I had taken with me to the appointment and told me "you don't have Behcet's disease". This wasn't news to me; I was pretty certain that my symptoms didn't match those of Behcet's. As she filled in the paperwork to send me back to the Rheumatology department the Prof decided to have a dermatology colleague take a closer look at the rash on my leg. She was pretty sure that the blistered, weeping sores on my legs weren't just your everyday scabs and that an autoimmune response was causing it.

The new dermatologist could not have been more different to the first one. He was very excited about my rash and used a lot of strange new words to describe it. I was immediately whisked off for a full on photo-shoot. No kidding! A photographer, screens, big lights.....the whole shabang! It makes me smile to think that my legs might make it into a pre-med lecture or two.

I had to wait for a couple of weeks for my biopsy appointment. Once again it was very different to the first procedure. The staff were super organised and had very clear instructions on what they were doing. They had all my photoshoot pictures up on a screen when I walked in; unfortunately they weren't as glamorous as I had imagined. The whole procedure took about 30 minutes. No punch biopsy this time, they took a slice out of the rash. I asked if I could see the biopsied flesh when they had bottled it up - it looked like a really small sliver of ham. They stitched me up and put a good dressing on the wound.

This morning I got to take the dressing off and have a shower. The wound is not sore but it is a bit itchy. It will be several weeks before I get the results. I am hoping that the result will tell my doctors a bit more about my autoimmune condition but I'm also prepared for the news that it's just a scab.....

Leg Biopsy

The Best Laid Plans

Life is what happens when you're busy making other plans - John Lennon 

I used to have an extremely busy life. I worked hard, I loved hard and I played hard. I worked every waking hour of every weekday (and those days were long) and at the weekends I burned the candle at both ends squeezing in all the fun I thought I was missing out on. I had just reached that sweet-spot in my career when people waited for me to give my opinion before making decisions. I felt like I had finally made it - I was important in my field. I had something worthwhile to say! And then one day in April 2018 my wonderful, stressful, exciting life all came to a screeching halt......

Nothing dramatic happened - no major life trauma. I just woke up one morning with 'flu. I was prone to getting colds. In fact I'd already spent a week in November toughing it out working remotely from my sick bed. I had dutifully phoned into the office and croaked out my plans as best I could. My week in bed did me some good but I couldn't shake the 'flu symptoms and the virus lingered on for weeks on end. I was dog tired all of the time (falling asleep in meetings), I ran low-grade fevers every night, and everything ached. Between January and March I pushed my self through the delivery of a really big piece of project work and on the day we completed it I was struck down with 'flu once again.

I was getting ready to collapse into my hotel bed, really pleased with myself for handing in the project. I just had my teeth to clean and then I could finally give in to the virus. And that's when I glanced it in the mirror.....a bright scarlet rash plastered across my nose and both cheeks. Why nobody in the office had thought to comment on it was beyond me. It looked awful! So I did what any other middle-aged woman would do; I took a selfie and sent it to my husband, "Look how sick I look...LOL"! The next morning I dragged myself onto a train and somehow managed to get my sorry ass back home.

And that was the last full day of work that I have done in over a year.

As it turns out, I didn't have 'flu at all. Instead, my body had finally succumbed to a raft of autoimmune conditions that I didn't know I had and which effectively put an end to life as I knew it.

I stepped through the autoimmune looking-glass and have desperately been trying to find my way back ever since.

To Blog or Not to Blog

It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to. 

- from The Lord of the Rings by J.R.R. Tolkein 

This Blog is about my life and my lived experience of Systemic Lupus Erythematosus (SLE), an auto-immune disease which causes the immune system to attack its own tissues and organs. Before you click away in search of something more entertaining, I want to assure you that my Blog will not be a poor me pity party. There will be no woeful soliloquies to tug on your heart-strings and extract your sympathy. The reason I want to write about my illness is to help people understand auto-immune diseases better. I want to explain how Lupus affects me and describe the various medicines and lifestyle changes that I have tried to combat the symptoms. Most of all, I want my Blog to provide the sort of information that I needed before and after I was diagnosed with Lupus. I want my posts to be informative, practical and entertaining.

As I set out on my first Blogging expedition, I do feel a little bit like Frodo at the beginning of his journey with the Ring - I have no idea where I might be swept off to! I don't have clear picture of what this Blog will look like, how often I will be able to post, or what topics I might explore. I am also unsure who my audience might be. Will anybody be interested in reading about an ordinary Scottish Lass with Lupus? Perhaps not! 

I first toyed with the idea of starting a Blog back in the early 2000s. I was already in the habit of keeping a daily diary and I thought it might be interesting to start Blogging instead. I knew that I had the writing skills required but unfortunately I also had very low self-esteem and no confidence. In the end, I convinced myself that I didn't have anything interesting to say and that my life experience wasn't worthy of anyone's attention.

And so life went on...Between the year 2000 and 2012, I completed my PhD, built a really rewarding career, fell in love, got married, had a baby, got divorced and moved to England. In fact, there were a lot of interesting life experiences that I could have blogged about!

So what has changed? Why do I now feel ready to write a blog? Strangely, the answer is Lupus. Having a chronic illness has given me a completely different perspective on life. My body doesn't allow me to do the things that I used to be able to do and I have been forced to slow down and reign in my perfectionist tendencies. My illness has also made me comfortable living in my own skin. My facial rash and sores are very visible, I wear compression bandages, and I often cry out in pain (severe pain in my kidneys). If I am am out in public, I am very aware of the fact that people stare at me. I have had to learn not to worry about what other people think of me. I am who I am, you can take me or leave me. 

And finally, I have found a really worthwhile topic to write about. I hope that you will "step onto the road" with me - let's see where this journey sweeps us.