Life! Like playing a game of cards.....

I'm on my night shift again... wide, wide awake in the early hours of the morning.  Got my cuppa and drawn to write something...

Had a pretty stressful and emotional time over the last week, not only with hospital visits etc but also relationship stuff.  Everyone seems to be going through a lot of 'stuff' at the moment, all the rubbish from the past being brought up into the present and causing a rumpus!    Whilst difficult to be with, especially when you already have low energy, it is helpful to be aware that this stuff only comes up in love to be cleared..hopefully for good.   Watching others' lives fall apart and go into free-fall though is tough to watch and knowing that this is life's way of giving opportunity to forget the old, move on in some way, clear the past was the only comfort really.

The greatest thing that I realised this week was shown to me by a friend - if a child was having a tantrum, being angry and saying all kinds of hurtful things to you..things that made your heart sink and your gut wrench..how would you react?  Knowing that you loved that child with all your being, would never do anything to harm them and yet they kick and push you away...what would you do?  That made me think hard.  Hmmm... I am not a mother but I felt immediately what she meant..      I wouldn't take my 'position' and point out the 'unfairness' of it all, I wouldn't fight back, I wouldn't take the things said personally and doubt their love for me... I would hold the space, tell them I loved them, ride it out until they came out of their anger...and be there when that moment happened to just bloody well hold them tight!  That is what love does. 

I too, am moving into a new phase in my life...yes, I have been diagnosed with a chronic disease, but I see that I am on the brink of learning and experiencing so much, am connecting with lovely beings from around the planet because of that.   My partnership is moving into the next phase also - where I am discovering that I can be shown new  ways of loving, intimacy and being.. where I am not so fixed in my ideas and philosophies and just see what happens when I let someone else lead the way...  kind of exciting!

I've said this a few times this week....  its like in life, we are dealt a set of cards to play with....how we play with them is up to us though...cards will be taken away and extra ones (even sometimes the odd joker!) given to us throughout our life and together with a lot of luck and chance thrown in...there is nothing else to do.  Sometimes it appears unfair and unjust, sometimes its a joy and amazing...... Its the play of life!

x

11.11.11, 11am. Perfect Timing.for a camera to be put up my nose and down my throat!

An auspicious date in the calendar and whilst many of my friends were meditating, at sacred spots, tuning in to new energies etc, I was at my local hospital having a camera put up my nose and down my throat!  Obviously the place for me...

Facing another one of my childhood bad memories where at age 7, I was pinned down by a group of nurses whilst a doctor did the same procedure without any sedation.....I had avoided having this done for a while now, but it was really the only way to see if there is any damage to my trachea from this RP disease.

I was jumpy, nervous and tearful - the sight of the guys in their blue gowns sparked me off...at this stage all they were doing were calling names out in the waiting room.   My friend was allowed to come in to the prep ward with me thank goodness because during my wait, the others patients in the ward kept on talking about the procedures they had had done and what was wrong with them – I’d go into waves of panic and fear and start drifting into a faint.  My friend was able to ground me and bring me back, distract me with other stories – in a way it was funny...I watched all the other ladies being taken away and brought back..and then the nurses handing over to the after-care team with details of what they had had done etc.. I couldn’t escape it.

Anyway, still waiting for my turn at 11am, my friend and I just looked at each other – we felt a surge of energy come through – very slight - we seemed to connect with out friends out there doing their 'ceremonies; and also the general public and the 2 min silence.  A few minutes later I was trollied away for my turn.. shaking so much, they thought I was cold but I was sweating through fear.   Whilst doing the necessary prep, canola thing, sprayed here and there, I held onto a kind nurses arm and they talked about dogs, snow and stuff until I felt drowsy and swimmy from the drugs.

The consultant doing the procedure was efficient and kind – and I finally saw pictures of my throat, voice box and trachea...it went very quickly and I wasn’t that conscious but they gave me a picture of the bit causing me my problems.   The good news was that there didn’t appear to be any damage to cartilage to my windpipe but there was severe swelling in the area of trachea just below the voice box..  very narrow and therefore making it hard for me to breathe and talk correctly. 

After recovery, the consultant who had been seeing me since my issues started some 7 years ago came out to talk to me.  During these 7 years  I have attended his chest clinic twice a year and had numerous tests and each time, he had scratched his head not knowing  what was happening.  He was patient explaining stuff and admitted that he had never seen anything like this in his career  and wouldn’t know what to do – that this was a specialist problem and I was seeing the very best person already, even if I have to travel down to London.   The internet is a wonderful thing!

I was left with this picture of the bit of my body that has caused me problems over the last few years – I stared at it and touched it and felt so much energy coming through – I sent it healing thoughts and acknowledged its presence...

Last night when I went to bed, I took the picture and meditated with it, feeling in and sending healing thoughts of expansion and opening...asking questions of it like why was it there, what was it I needed to learn....  I made a special place in the window, with healing crystals – it felt right somehow...

This morning, it feels really good still to be able to see what the area actually looks like...it enables me to tune in with it more intimately somehow.   I think that this will be a useful tool for healing...

Out of bed now to prepare for the Metho dosage today.

Hospital day out..treatment journey begins....

Friday 28th October - key date in the mayan calander was spent at St Thomas's hospital in London.  A follow up with the specialist to find out what my treatment plan was to be.  Arriving early to a packed clinic, I was last on the list, last to be seen.   

I was nervous but keen to learn what my treatment plan was - I just wanted to feel better and do the things I miss so much. 

Firstly, the one good piece of news was that I do not have Lupus!  A relief which lasted a short while and then official diagnosis of Relapsing Polychondritis and three blood clotting disorders (one of which I already knew about).  The plan was to give me a variety of drugs to include methotraxate and pred together with things to help support my body, liver and kidneys in particular.  Side effects were listed, many of which I had heard about but hadn't gone into in detail - I just wanted to hear that in a few weeks, I would feel so much better.  However, to my dismay, what I got was there is no guarantee but it was hoped that it wouldnt get worse...my tears of disappointment began...with a sympathetic but supportive look from my love sat next to me.

The consultant then spotted my swollen leg which I had put down to my inactivity..he thought there was a possibility that I had got blood clots in my lungs!  I said surely not..it's due to lack of exercise, I would know.  But he insisted and ordered some emergency scans and tests and warned me that I wouldn't be allowed home if anything was found.     As he brought in the senior nurse to take me away, I felt some very old patterns coming in, through my mind....my old phobia of needles, hospitals, blood etc kicked in, I began to cry, feel faint.   However, I just knew that he was wrong, took a deep breath ignoring the fear and thoughts in my mind, and went with the nurse.   Unfortunately, my veins failed, and it took several attempts for two nurses to take blood and insert a drip attachment.  The whole while, my mind going into the old pattern, echoing voices and feeling the blackness come in.

This familiar feeling remained throughout the waiting for scans, tests and the feeling that I would pass out got stronger as tests were carried out.  Shaking, hot then cold, muttering to myself - making myself laugh now typing this.  You know I was amazed how strong that patterning is still in me, after all these years, same fears, thoughts and feeling in my body.

Anyway...I was right, there were no clots and I was given the all clear to leave.   

Back to the original consultant to finalise the drug therapy plan.   They had in the mean time got access to the previous scans undertaken weeks ago and a bit more good news is that the scans showed inflammation of my trachea but no signs of damage.  This will have to be confirmed by a broncoscopy next week but hey I grabbed another piece of good news.  We left the hospital around 6pm shattered.

Over the weekend, I've gone up and down with my feelings surrounding all this.  I took my first Metho dosage on Saturday, doing energy work with them before welcoming them into my body.  No side effects yet and it takes a few weeks to get into my system.   I can't help sometimes though feeling let down and scared that I am taking a drug used for cancer patients, wishing that any of the other options I have explored over the years had worked.   

I am endeavouring though to be positive and seeing this as something that I am to experience, allow.  Each time I take a tablet, I go through a similar procedure, food to line stomach, energy work, quiet space and welcoming into my body something that is part of creation.  

Any hints, thoughts or whatever come to any of you that I might be able to use to support my body through this are welcomed.

Mixed emotions....

A bit of everything thrown in the last few days....  I am feeling tired and achey.   A few days to relax and chill before the many tests/scans booked over the next few weeks - its sunny and bright outside but I am scared and tearful.  I dont really want to cry as it will make my eyes sore - they are already sore from being so tired...holding it in.

I've tried to keep positive and concentrate on the 'good' stories on the net but I cant help noticing some of the dire outcomes for Lupus sufferers - its scary.   I am not afraid of death - have been close to it before BUT even so, it makes me go dizzy thinking about what may be in store for me.  So premature as well - I need to have more blood tests for final decision yet - its so ridiculous that I am allowing my mind, fear to get in and cause havoc.    Blood clotting disorders, RP thrown in as well - I feel its all out of my control - which of course it is on some level!

I've also been looking at the dilemma of going against my 'belief's' and 'principles' in finally going down conventional treatment route...  I still have that belief that I can 'reverse' this thing, that we can heal ourselves, good diet, good living etc etc...... not wanting to get into the cycle of 'pharmaceuticals' masking symptoms, the side effects etc.  Also I buy into all the conspiracy theories that talk about mass vaccinations, big corporate influence, chem trails, fluoride in the water issues etc etc....and here I am about to step into that whole world.  Then again - there again, there is no separation, all is part of the whole, of god, the one!  And then I think that had I been in a different culture, different period in time, then I wouldnt have survived to this age - I'd have been picked off a long time ago.

Not sure if that gets across what the dilemma is within me.

I want a hug, I want to be held right now. 

Life has put me in a place that I am alone for a few days though - so maybe I will cuddle Milo, meditate, love myself - that is what I must do. All perfect - I have to keep reminding myself!

Retreating......more diagnosis!

Just come back from a five day retreat in Devon...wonderful space re-connecting with The Form, soaking up the energy and yummy food!  My body behaved itself in the main, the weather was good and everyone was so friendly and welcoming.

Milo had a good time with his dog sitters - even managed to find a new doggy girl-friend called Molly.  Apparently they were so sweet together!

With all my bags in the lounge ready to unpack and put away, I listen to my messages  and my GP had been trying to get hold of me regarding a letter.   I open the post and there is a new letter from my London consultant - not great news!  along with the diagnosis of RP, it seems I tested positive for Lupus and Coombs, have very high blood pressure and he suspects I may also have antiphospholipid syndrome and scleritis in my eyes.  Ugh!

Luckily, I wasnt able to get straight onto the internet but I was in a tizz for a few hours..  I felt so fed up, tired from travelling and couldnt face putting all the stuff in my lounge away or eat.  I didnt know what to do really - I really wanted to cry - but couldnt or wouldnt as I didnt want my throat to get irritated and my eyes get sore.   Deep breathing, a few Form movements - didnt want to upset my parents who are the closest in distance to me - just wanted to hear what my GP had to say.    He eventually 'phoned me back to discuss various appointments for tests and to tell me not to research any of these new things!  He knows me well!

Too late though - wont do too much more until I see the specialist again but from I have read, these things could explain some of the mysterious illnesses. symptoms and miscarriages I have had over the years.  That is a positive thing - I no longer feel I am going mad.  At least now with 'labels', I feel I am believed more and I can now 'let go'...  that feeling of taking a deep breath and dropping the tension in relief.

Back to the retreat - whilst before I was still feeling I had let myself down in someway, failed in having to have conventional treatment to feel better, over the space of the last few days and really listening to what a couple of people had to say, I am not beating myself up so much.

These things happen to us as human beings as part of the experience... for whatever reason - maybe some higher purpose.  Accepting conventional therapy maybe part of that experience too - and maybe I need to see that ALL things are part of God/the creator/I/the one....  including pharmaceutical drugs - all part of the same.    I know of spiritual teachers, enlightened teachers that have also had illness, taken drugs to help them...it is not a failure, just part of the experience.

So.... Namaste to life!

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

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