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

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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Comments 5 comments

Jen's Solitude profile image

Jen's Solitude 4 years ago from Delaware

Hey Lady! Thanks for the e-mail and welcome back! I can't believe it has been two years though. I will continue to follow your story. :-)

-Dar


JanTutor profile image

JanTutor 4 years ago from London, England Author

Hi Jen I was around November - December 2009. January 2010 I ended up in hospital for another long stay and have been in and out very much since then. It's good to be back and once again thanks for the hearty welcome!


chunkymcmanus 4 years ago

I recently found out that I have a serious disease I don;t feel ready to talk about it to my family so I'll write. I like the start to your story please compleste this as soon as you can


JanTutor profile image

JanTutor 4 years ago from London, England Author

Dear Chunkymcmanus, I'm sorry to hear of your illness and of your reticence to share. My family and friends have literally been a life saver. Without their efforts we would have coped less successfully as things stand we're doing well. Feel free to send me a private message - I have willing ears and a open heart.


Brownie83 profile image

Brownie83 4 years ago from Arvada, Colorado

Autoimmune diseases; such as, ANCA-positive vasculitis, Rheumatoid Arthritis (RA), Lupus, Antiphospholipid syndrome, multiple sclerosis (MS) are greatly affected in the presence of pregnancy due to the high concentration of sex hormones and chemical changes within the body. People with RA typically have improved symptoms during pregnancy and then experience a severe flare-up once the baby is delivered. This is believed to be due to the increased number of a subset of the T regulatory cells (called Tregs, or a part of the white blood cells to keep it simple). These Tregs suppress immune responses and promotes the circulation of anti-inflammatory proteins (cytokines) resulting in improved symptoms during pregnancy and a sudden loss of these Tregs results in a flare post-delivery. In contrast, Lupus and Antiphospholipid syndrome typically flares (50%) and remains active during pregnancy. There are few studies on the effect of pregnancy in patients with vasculitis but it is known that pregnancy increases the risk of kidney and lung complications, pre-ecclampsia, prematurity, and low birthweight in this population.

Autoimmune diseases are sneaky and many times start with vague symptoms that baffle healthcare providers and leave them with the only option of sending their patient to a specialist. It feels like betrayal to most patients; to be sent away to a stranger when you’ve developed a close relationship with your usual provider. I am so happy that you found an amazing specialist and hope that you are being treated well. I think it is also very important to investigate and record your family health history for your child and healthcare providers. When performing a history and physical, sometimes the only link a healthcare provider has is the family history and linking it to the signs and symptoms to clearly define a diagnosis. And hopefully one day, that wealth of family health history knowledge will lead the path to the prevention of such diseases.

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