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The Road To Death Can Be A Better Life (Part 1)

Updated on August 26, 2012
My illness does not define who I am, my journey does.
My illness does not define who I am, my journey does.

The start of my journey


I am a 46 year old married mother of one. I was diagnosed with Vasculitis 4 years ago and just to add insult to injury I developed Sarcoidosis (another neurological condition) 18 months ago.


I found HubPages during my illness but have been away from HubPages for 2 years, when my condition took a turn for the worst. This is the first instalment of what I hope will be an interesting and inspiring story.


It was a cold February day (2008). My tuition centre was heaving with students – their nervous energy permeated from every pore as David my Head of Law and I attempted to see each in turn – assisting in the editing of their essays was a bit of a nightmare. Getting them to write and rewrite sections of their own and each other’s work (deadlines being imminent). The students asked as they always asked, " isn't someone editing and rewriting my paper cheating?" We answered in rehearsed unison “No, not if it's done right. It depends on the circumstances and the assignment, in fact most if not all published authors take advantage of this kind of assistance. You need to learn how to manage this kind of help. Sometimes proofreading is simple punctuation correction, but sometimes it involves sentence modification.” I appreciated how important it was to ask but I was barely up to the task. It was pretty crazy (nothing new) and for me uncustomarily stressful.


Late afternoon came around pretty quickly, though not swiftly enough. My temples began to throb. Only the peppermint tea I had sipped throughout the day stopped me from vomiting, the nausea was nigh on overwhelming. One more doe-eyed request was bound to throw me over the edge. I had felt pretty lousy for a couple of weeks but today felt like it had peaked. Excusing myself from the centre I drove the 5 minutes to the local supermarket. An hour later back in the office I called my husband (a clandestine conversation ensued).


A fortnight later we had our first neo-natal appointment – it all became very real. Gosh 42 and about to have my first child – I’d never really wanted to have children – but now I felt ready – incredibly nauseous but very, very happy.


Over the next few weeks Baby and I had a great time. I still worked 7 days a week – it was my business I’d built it up from scratch. My business was successful both in terms of attainment and growth – moreover I thoroughly enjoyed my work, but Baby became more of a priority. Business hours progressively reduced as my staff took on more of my teaching assignments.


Despite all the best intentions, a near perfect diet and a reduction of 60% in work schedule, I went into labour at just 25 weeks. I didn’t even know I was in labour such had been the pain and discomfort throughout my pregnancy. I will never forget the doctors face as he announced that I was 4cms dilated – The events which followed were all to save my baby and to prepare me for the worst. My chosen hospital had a do not resuscitate policy on babies less than 28 weeks gestation; I was transferred by blue light ambulance to a hospital a few miles away. I had never been to the Homerton hospital and because of its location I expected decay and depravity – I could not have been more wrong. The building, equipment, staff – everything was first class.


On 21st May 2008 Lorena came into the world weighing 1.8lbs.Today my beautiful 4 year-old is perfect in every way – in fact her physical and mental attainments well surpass her age.


After 11 weeks in neonatal my tiny baby now weighing 4.4lbs was ready to come home. Of course I was anxious – I was a new mom – what if she stopped breathing, what if, what if…


A couple of weeks after Lorena’s discharge my problem started as a numbness and tingling of the toes, I could best describe it as how I would imagine it would be if my feet were forced into the carcasses of frozen chickens (bad description but). As a week went by, the pain increased rapidly I could barely walk, each footstep was a wince. My doctor had no idea what the problem was and instead of referring me on merely gave me a ‘To Whom It May Concern’ letter. Disgraceful if you ask me. Undeterred I went to the Accident & Emergency Department of the Hospital where I had had Lorena – the trainee doctor did not have a clue and the House did not even give me the courtesy of popping his head into the cubicle. I was summarily dismissed. Another week went by, my symptoms had worsened, the pain and numbness was travelling up my legs in a stocking like pattern. I knew that there was something very serious going on, so I packed a bag with enough nightwear, toiletries and towels for a week and my friend who has an uncanny likeness to Barbara Bush took me back to A & E where we were received by the most amazing A & E doctor. James saved my life. He was the first to take my symptoms seriously. I was booked into a high dependency ward and 7 days later having endured a myriad of tests I was transferred to the Neurology Department of the Royal London Hospital where I was to remain for almost 2 months.


There were many bad days but out of them 3 stand out …


WATCH OUT FOR PART 2 – COMING SOON!!!!

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