ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

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 …



    0 of 8192 characters used
    Post Comment

    • Brownie83 profile image

      Kelly (Brown) Wagner 

      6 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.

    • JanTutor profile imageAUTHOR

      Jan Thompson 

      6 years ago from London, England

      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.

    • profile image


      6 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 imageAUTHOR

      Jan Thompson 

      6 years ago from London, England

      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!

    • Jen's Solitude profile image

      Jen's Solitude 

      6 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. :-)



    This website uses cookies

    As a user in the EEA, your approval is needed on a few things. To provide a better website experience, uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

    For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at:

    Show Details
    HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
    LoginThis is necessary to sign in to the HubPages Service.
    Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
    AkismetThis is used to detect comment spam. (Privacy Policy)
    HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
    HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
    Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
    CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
    Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the or domains, for performance and efficiency reasons. (Privacy Policy)
    Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
    Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
    Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
    Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
    Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
    VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
    PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
    Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
    MavenThis supports the Maven widget and search functionality. (Privacy Policy)
    Google AdSenseThis is an ad network. (Privacy Policy)
    Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
    Index ExchangeThis is an ad network. (Privacy Policy)
    SovrnThis is an ad network. (Privacy Policy)
    Facebook AdsThis is an ad network. (Privacy Policy)
    Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
    AppNexusThis is an ad network. (Privacy Policy)
    OpenxThis is an ad network. (Privacy Policy)
    Rubicon ProjectThis is an ad network. (Privacy Policy)
    TripleLiftThis is an ad network. (Privacy Policy)
    Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
    Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
    Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
    Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
    ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
    Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)