A Brief Account

My story started about sixteen years ago.  It was when I was five months pregnant with my fourth child.  I'd had breathing trouble and was admitted for ten days to hospital where I was told I had a blood clot on my lungs.  Well, at least the consultant was, he said, about ninety-nine per cent sure but could not do a proper test as I was pregnant.

I was treated in hospital and sent out with out any further treatment or prescriptions.  I was admitted several times with what seemed like at least one other blood clot, before the birth of the baby and ended with me having to inject myself four times daily with a warfarin based drug called Heparin.  Not too wonderful!!

After the birth of the baby I had fifteen further admissions that year with either collapse or breathing problems.  It was decided that I was not having blood clots anymore but no one seemed to know what the problem was.

I spent the next three years having test after test.  I was going down hill with symptoms that seem endless.  There was always a long list of symptoms. I felt like a hypochondriac.  I was sent to a renal doctor, a neurologist, a general consultant and consultant for womens problems. My doctor promised an appointment with an M. E specialist but forgot to make the request.  I never did see one.

Then, eventually,  it was suggested that I may have Lupus.  All the signs were there.

I was signed off work by a government doctor.  When I attended my appointment, he just lifted his head, took one look at me and said "I can see you have Lupus, you have the butterfly rash"  That was all he said. No more chat.  I was sent home clutching a sick certificate.

When I got home I was relieved to know that I now could rest and not worry financially about the extra help that I would need to employ to look after my family of seven, including Grandad.  I had by this time myself, my husband, two teenagers, a five year old, a three year old and granddad.   I definitely needed help with my household duties.

My responsibilities were rather large for someone who was frequently collapsing!

Sometime down the line I wondered for how long the doctor had signed my severe disablement allowance certificate,so thought a quick call to the agency would be a good idea.

I was so shocked and appalled when the response was that I had been signed off for nine years!!   Did they really think that I would be off work for nine years!!  Nine years!!

I felt depressed and sad.  

Well,  as time went on I was subjected to many tests and frequently had to make the journey to London St Thomas Hospital where Dr Hughes was my consultant.  

It was decided that I had probably got Hughes Syndrome.  Named after the Dr Hughes I was seeing. I'd suffered a miscarriage,  I had livedo reticularis and had also had blood clots.  It fitted the picture of Antiphospholipid Syndrome, Sticky Blood or Hughes Symdrome named after Dr Hughes.

It was considered that I probably had Lupus as well.  All the indicators were there.  

After three years of test after test nothing really came as a definite diagnosis.  Anyway, if I was having a flare, by the time I could see a consultant in London, the symptoms would have subsided and so the inflammatory markers would not show and the results of the bloods would be inconclusive.

Frustrating!  I stopped going.  There seemed no point.  I decided to get on with my life and that I should use will power to make this awful illness go away.  It was a matter of being positive and not letting it get the better of me.  

Naivety! Yet again, it did get the better of me.  I suffered another serious and extremely debilitating flare.

A homeopathic friend of mine had heard of my plight and offered me a card. Very kindly she just said "Just give me a call, I may be able to help".

From that time on I started my recovery.  

At first with homeopathy and then I became interested in herbal medicine and qualified myself as a herbalist.

With these complimentary medicines and the support of my local GP's I did not look back.

I had no need for Lupus consultants for 12 years!

In this time I started writing.  

At first it was as my own kind of therapy but, it has become important to me, that I tell my story so that those newly diagnosed may take some comfort that we can overcome so much of this illness.

The book cover below may seem shocking and I am sorry if I have offended anyone. A friend of mine once told me it was too shocking

and I shouldn’t use it.

The trouble is that I cant get that image out of my head.

It is too good at describing exactly how I feel. It describes how I would put on my makeup and look presentable but all the while I would feel broken and bleeding.

The other thing about the image that you may find puzzling is the titling with it.  

I have made a website focusing on Lupus but listed many other diseases with it.

The reason for this is that as we know Lupus is a difficult and elusive disease to diagnose.  It is called the Great Mimicker.  What you have may be mistaken for any number of serious and life changing illnesses.

The book goes into the processes I had to go through to finally get to understand what has been wrong.

The realisation that the primary cause of my Lupus symptoms was in fact Tolulene poisoning only came about three or four years ago.  Up until that point I had the run the gamut of test after test to see exactly what was causing my symptoms.

Yes, I went to a neurological doctor, a renal doctor, an allergy doctor, pyschiatrist and for myself, I frequently felt that I had hypochrondia.

All I actually wanted was to be able get on with my life and not have periods that would render me unable to continue with my responsibilities and ambitions.

You can listen my story here on the Diana Moreno Show