I don’t want much, just a fun run maybe?

Sooo it’s been an age since I last blogged anything personal and this is in some part due to bad time management (and being distracted by social media during a designated blogging period) but is mainly due to my business, a new social enterprise I’m researching, my children and my unreliable body.

Since my last dalliance on here, as an update for you, I still have the pyoderma gangernosum on my stoma site although its not as wild, I am now very rarely (she whispers so as not to jinx) flaring from the PPP and Psoriasis but it seems I have developed an all new, all singing, all dancing  auto immune disease. I have now been diagnosed with rheumatoid arthritis – this will be my 5th auto immune condition at the grand old age of 32.

The announcement of condition numero 5 has left me with a bit of a bee in my bonnet and a fire in my belly – I’m now going to tell you why but am forewarning in advance that I my climb aboard a soap box…

In previous posts I wrote about the fact that Auto Immune (AI) disease is publicised and researched in the USA, among other countries, and that AI is recognised in own right and is classed as the 3rd biggest killer of woman under 65 in the USA alone  -but what I still don’t know and can’t write about is the current research in this country, the statistics of death and disablement in this country, the amount of money spent on drugs that only hold and not cure all of theses conditions in this country  but and much, much more importantly I can’t write about all of the people up and down this country that live with multiple conditions, that live with daily on-going pain and trips to the doctor/hospital/physio etc, that are disabled and/or deformed beacuase their conditions and those who hide and withdraw from public as they are always to ill or too tired to attend anything… I want to write about them, the army of thousands who live with what is often an “invisible illness” to hear their stories, listen to their pain and frustrations and share tips and empathy, with a dash of humour – as if we didn’t laugh, we’d cry right?

Other than the research, the statistics and real life AI stories, know what else I want?

Recognition.

I want recognition that I and millions of others have a disorder with our immune systems and is that that is causing our bodies to react and display its imbalance through many conditions – RA, CFS, Lupas, Chrons, Psoraris, MS, hashimotos’s thyroiditis, grave’s disease, addisons disease; the list goes on. Are all those diseases one and the same thing? I believe so. I am not a doctor but I do live with AI and educate myself about it as much as possible. I believe no one can be so unfortunate as to have numerous conditions separately attacking their skin, their bones or their organs without there being a connection to it all – be that genetic, environmental, dietary or emotionally driven – all the diseases are linked to the immune system and in all the diseases and disorders the attack on the organ/bone/skin comes from thier own cells, therefore it is the immune system that is out of control and how it manifests itself will depend on the individual – but all in all, a spade is a spade and I want the recognition of being referred to as auto immune. In a perfect world I’d like to be treated for my immunity problem rather than being treated for several conditions with many different drugs and treatments at any one time.

Above all else, as the ultimate recognition, I want AUTOIMMUNE written as my cause of death when that day comes.

Now, please don’t think this morbid or that this post is about to turn dark and melancholy, as I can assure you I am a very upbeat sort of gal but I am a realist. Due to the types of drugs I have taken and the time periods etc. and due to the fact that my immune system is buggered (yes, technical term) I will most probably die of either a complication from an infection like pneumonia or from cancer -Yes I know I may also get hit by a truck or die in freak bungee jumping accident but just for arguments sake stay with me. Now before I do go on I should state that I have more than a heart full of empathy for people who have been touched by cancer in anyway, shape or form, it is a terrible disease but I do not want cancer to take the glory of my death – it will not be cancer that will kill me, that will be just a finisher, it is auto immune disease that will of kill me, slowly, a bit at a time since the age of 18 until the day it wins. Surely “Autoimmune” should take the glory on the death certificate… which would give us statistics… which would give us data to go off to research…which could give us hope of finding the way to re-wire us.. which would give us recognition!

So the result of the bee in my bonnet? A new movement obviously… I’m not one for whining, I’m more of a doer. I believe in life that if you don’t like something you should change it or hush your noise and since I’ve bored you with my rant, I couldn’t let you leave without my action plan…

I am pleased to announce the birth of:

The dream is for a website is that ultimately it not only holds medical information and support contacts for all the associated AI diseases and disorders in one place but also provides articles and information on nutrition, exercise, lifestyle, alternative therapies and the latest drug technologies for informed choice  – however the most fandangled thing I would like on the site is peoples blogs, poems, stories or comments – so please, please, please if you have AI, you are medical professional with a view, a nutritionist who believes you can heal through diet or a reiki master who goes with alternative medicine I would love to hear from you all… (also any techie types who could make the dream a reality as a part payment on their angel wings are more than welcome)

The website is a work in progress but please connect with me in other ways:

If Auto Immune UK gets enough klout, we will have a voice to make a change and, who knows, if we keep plugging away and raising awareness in the not too distant future there might be fun runs to raise money for AI research as people will be aware.
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One thought on “I don’t want much, just a fun run maybe?

  1. Really interesting post, I hope the website takes off for you (I’m sure it will). It’s such a shame that the UK is behind on research and stats as this will and does hold them back helping people.

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