Diagnosis at last! Mixed feelings and Big Ben!

Following a visit to a specialist in London today, I finally got a diagnosis of RP (Relapsing Polychondritis)!   After a journey of nearly 7 years and numerous tests, consultants and alternative therapists scratching their heads, my GP suspecting RP for 2 years and my push to see the 'God of RP' recently, it seems that there is no doubt.    I show all the classic signs and a blood test carried out a while ago, (the result not investigated further by local consultants) it is the only explanation.

There was a sort of disbelief at first - and I asked him to repeat what he thought.  For the first time, a man in a white coat was prepared to state what he thought and was telling me that it was necessary to treat now before it got any worse and possibly too late.   Relief!  Finally, someone had listened to how debilitating my symptoms are sometimes and someone that saw that it really couldn't be left any longer.

I didnt have many questions then, I'd researched enough to know that this was a rare and progressive auto-immune disorder.   This man had the most patients in the country under his supervision (35) and I have already connected with support groups on the net.  Whilst not particularly the result I 'wanted', I could have got worse diagnosis.  I listened to the ordering of scans, biops and blood tests and booked another appointment for 6 weeks time.  My local GP and Consultant will be sent instructions as to the plan of action.

After shaking his hand, I walked to another building to have the basketful of tubes of blood to be taken and left the hospital.

Walking across the bridge, noticing that one of the London Eye cages was missing and then to the Houses of Parliament.  I don't think I'd ever stood in front of them before...it was coming up to 12 noon and I realised that Big Ben was about to boom!   Suddenly I got into tourist mode, rang my mum and made her listen to the familiar sound before telling her my news.    We didn't talk for long, the energy of London, the cars, the people and the noise was getting too much.

The questions began to arise on the journey on the Tube, to the car, back home - I have time to write these down and ask for clarification.  I was so grateful for my love to have taken me into the City, to have sat by me, taking in what was being said to me, commenting on how he saw things.    We were both so exhausted.

Right now, its 3am.  I woke and inevitably have started to think about what is happening.  As my love slept deeply, I began to cry - those tears were so so hot, they burnt!  I didn't wish to wake him or his two children asleep in the house so I have brought myself into the spare room to have tea, biscuits and to write this!

Whilst it is a relief to have a diagnosis and someone that is going to plan a course of treatment - there is mixed feelings in that.  I know there is no cure - the drugs given are likely to just stall the progression and hopefully improve my day to day living.  I already have another rare disorder - Protein S Deficiency which I have lived with for many years.  That disease enabled me to move into a more conscious way of living and transformed my life.  Maybe this is my next 'transformation'.

My tears are for the 'unfairness' I feel, the fear of what is to come, what they still might find from the tests, fear of how this will effect my loved ones, my friends and the sick feeling that I might not be able to do or have the things I yearn for in life.  I just looked up at the ceiling and let out my 'lissy sigh' at myself!  Shaking my head now because I know that I can get through this and see the whole thing as 'experience', a way for me to more conscious of the present, more appreciative of the moment - I've been doing that since my blood clot.   On some level I have chosen this experience, for some reason my body, my immune system has decided to go into this pattern - so I flow with what is -  as best as I can.

I had typed "my hope that maybe my immune system might reverse this pattern its has chosen'..and my laptop crashed and deleted that paragraph.   Ok...  I wont choose the word 'hope' - that is not being the present!  :)

So, whilst my blog has been more and more writing about my day to day life with health issues - I feel that this blog will inevitably change into writing about my experience with an auto-immune problem, a hidden illness and how that gives me the opportunity to experience yet another aspect of the human experience, and deepen in my awakening.  I had just started to wonder if I might start a new blog specifically for  that but then I dont really see that having a label of 'RP' is a separate part of who I am - its all part of the same Journey of Awakening Woman!

Watch this space!

Namaste

X

A Journey of Awakening Woman: Creepy, crawlies, crawling skin....sleepless night...

A Journey of Awakening Woman: Creepy, crawlies, crawling skin....sleepless night...: Something very strange going on... for days now my skin has been sort of crawling - feels like I sometimes have an ant or tiny spider crawli...

Creepy, crawlies, crawling skin....sleepless night

Something very strange going on... for days now my skin has been sort of crawling - feels like I sometimes have an ant or tiny spider crawling around but when I investigate nothing there.  I've not been well, at home resting and not doing much so assumed it was just itchy from sitting around a lot - but ugh!

Just now, having slept for a while, in semi consciousness, I was aware of something crawling on my arm...several times, I 'woke' myself up a little bit more and as soon as I paid a thought to the sensation, it disappeared.   I drift off to sleep again to only feel it again a minute later!  This went on for several minutes until I was sufficiently conscious enough to reach over to put the light on....looked quickly and I swear I saw a glimpse of a very tiny, worm like creature slide across my arm and disappear into the air!    Really!

Sitting up, I carefully lifted my pillows, duvet and nothing was evident.  I switched on a big light, examined every inch but again nothing.  Did I imagine that?  I fear fleas, bed bugs etc but have had no bites and all my linen is cream so surely I would notice some creature if that was the case?

:)  OR in my semi-conscious state,, was I witnessing a creature from another dimension?  Hmmmm!  Maybe they have also been playing havoc with my throat, nose, immune system - oh my imagination runs wild!   Maybe I have watched too many Stargate SG1 episodes in my time!    Thats it, wide awake and have to get up for some tea.  :)  

As I write, my skin in crawling again... in my hair, no, on my back,,,no around my waist..no, on my foot... I shiver...     I wonder if you are too after reading this?

Night Night...  XX

A Journey of Awakening Woman: Hmmmm...Ugh.... Aaargh! Hmmmmm..... :) Descri...

A Journey of Awakening Woman: Hmmmm...Ugh.... Aaargh! Hmmmmm..... :) Descri...: Been ages, yet again... you all must have got so bored and assumed that I have given up on blogging.. well I sort of have! Apart from gen...

Hmmmm...Ugh.... Aaargh! Hmmmmm..... :) Descriptive enough!

Been ages, yet again...  you all must have got so bored and assumed that I have given up on blogging.. well I sort of have!

Apart from generally feeling run down, resting lots, periodically travelling up and down the M5 to Wiltshire and back, theres not a lot happening.  

Today - with raging sore throat and head :( , I am writing at my desk with the sunshine pouring through, with Milo and Danny (Border collies!) at my feet...  swallows doing their stuff just outside - perfect. :)

Namaste,
X