All clear..but there was another reason to go to hospital! Such synchronicities! :)

Well today I was given the 'all clear' ...the hospital scans didnt show up any blood clots so I can now stop injecting myself with blood thinners :)  Fatigue has subsided today to  - so I have just made an Apple Pie with fresh apples from the orchards!  :)

BUT...there was a reason I was in hospital today.. The nurse was taking down my medical history and when I mentioned the RP, she put her pen down and looked at me. 

I had a shiver go through me and a download of energy and asked her what was wrong.   She was having cartliage issues herself and was having trouble getting a diagnosis...ah I said...thats why I am here then!  But the 'coincidence' didnt stop there... she asked me who my consultant was in london...as I said Dr D Cruz..she laughed and said she had just heard about him from her dental nurse.  I had another download of energy and said..right this is why I am here today!   It was my turn to laugh... this dental nurse you go to  is she in Evesham by any chance?   Yes she said...my god..its you...   Yes!  I laughed! ...I had told the dental nurse about Dr D Cruz a whilst back as her mother was having similar symptoms..  As it turned out, the nurses had had a conversation about 'me' last week...and the mother was now getting sorted out and the recommendation of Dr Cruz was passed on!     Thats how it works!

We were both pretty shocked but then again I wasnt...it was all perfect.  Interestingly, she had once lived i the same village as I do now..it does make me wonder if there is something environmental causing this increase in auto-immune issues!  I shared some hints, and discussed the fatigue that comes with auto immune stuff etc and she shared her progress thus far with the local rheumys...and she also felt that there would be no blood clots in my system but that we had to go through the motions.  

We hugged each other warmly as I left and she thanked me for having passed on the info.     This again is another confirmation that life does work out...flow as its meant to...regardless of how it seems at times. On Saturday I was so tired and was feeling pretty 'alone' with it all...I had also heard that day that my sister had got blood clots in her lungs and was having blood thinners.  But I knew at the same time, I was okay...it was body mind stuff and I am so much more than that.   It was empowering to me to be able to self inject so easily and there was a knowing that whatever symptoms I was showing of clots was really just my cells transforming..

Grateful thanks to the NHS yet again!

Namaste
X

Never ending deepening, fully living regardless of the body!

I have just returned from another retreat with Bernie...yet again I am amazed at the depths I am touching..it truly is endless.  Even as I re listened to the audio yesterday, there was an even deeper knowing, from another point, another level of being...it's like I am a giant kaleidoscope - I am!  This is so hard to put into words! 

I cried with the enormity of this multi dimensional reality, the vastness and the responsibility of knowing that....and then I can hear a call for 'more..ready for the next'..which makes me laugh at the same time as the crying!

Seeing  the potential for the evolution of humanity..It is a choice less choice now...I give over everything!  Thy will be done!

In amongst all this, this body mind is doing it's thing...hospital next week as there is some concern about my trachea again...I will go, take the tests, listen to the consultants views.  And yet I feel wonder filled!  I have not 'felt' this well for a long time regardless of what may appear on scans of this body!   

I get on with life..and allow it to move me...

Amongst the many many things I heard at the weekend with Bernie, one discussion that humbled me which seems fitting for this blog entry is transcribed below:

"He is shattered..I am shattered...what a wonderful state...there is pain in my body..I am wonderfully shattered.  I get on a plane and the shattering says "I can't do this" ... I say "p off shattering, I am going".  I will attend to it when I have time to.

Get in your new body...do you really think you need to look after your body..?  Yes I do when I do...but the real looking after your body is being true.  Whilst you are being true, the very genetics of humanity are being changed by a higher power. 

Any realiser has something happening in their body.  There have been some great realisers that have died of all manner of cancers and things.  Things move in the body when you begin to become who you really are...there is transformation on every level.  So look after your body but live fully!"


A life threatening blood clot woke this one up..suddenly!  Such transformation took place at that time, it changed my life utterly and completely. It led me to search for more and I then met Bernie.  At my first retreat with Bernie, I entered the cosmos, the deathband and realised immortality.  Shortly after that, a few months of living with him, I was diagnosed with severe anaemia..the doctors were puzzled because they couldn't find a cause for it, nor could they understand how I was even walking as the blood count was so low.  Bernie told me they would never find the cause - as my DNA had changed.  This I now know.. On so many levels.

Illness and unusual diagnoses have been a major part of my journey...they have led me to so many paths, situations and people that I wouldn't have encountered otherwise.  Such transformation is a gift.  I am grateful  for all of it! 

So!  If Bernie can get on an airplane exhausted with his body calling for rest..then I can also...it is what I am being called to do!    

Namaste
X

ps.  Bernie is now in South Africa with a team of teachers of The Form that have been sharing CosmoForm around the townships.  I have been so in awe by how they are touching many in this way...truly humbling.  Please check out what are they doing here:

http://www.cosmoforminitiative.org/

Rant..about RP to Happiness Jars!

A whirlwind of emotions...pain..tears...   Thursday, I thought I was going mad...actually insane....

It started with the doctors.  A meeting to discuss the latest hospital visit..to get me to go on blood pressure tablets and to discuss me not taking my aspirin that I have been prescribed...oh and to push the flu jab!  

After discussion, I asked him to tell me what he would prescribe for bp..and he went through the list and discounted them all due to the mtx and my rp symptoms!  He was going to have to write back to the hospital for advice. Although I ididnt want any more tablets to take..I felt my energy drop... Everything is so difficult..I started to cry,,I was so fed up of being in this situation..it didn't seem fair.  The doctor was surprised. He has usually commented on how positive I was..and tried to boost me up a bit.  What he said was..if you had all this 50 years ago..you would be dead!   Hmmm!

After that I saw the nurse for my regular blood test check...I have not been too good with these recently..very fainty..so was prepared with fizzy drink and chocolate bar for distraction!  :). The nurse was great, it didn't hurt,,not a problem..she put a plaster on..but I caught sight of the fact it wasn't stopping bleeding.  Ugh going funny now again!  Lol. To cut the story short and so I dont faint now.. I went fainty again..couldn't leave the doctors for a while to recover!  The irony is I am supposed to be taking aspirin to thin my blood !

Odd day after that,,I didn't speak to anyone..no phone calls, no one on Facebook...weather was dreary and dark.  I pottered, meditated and wrote more of my book.  (Yes finally writing a book of my journey!) then it was tea time.

I began preparing the food...and suddenly I went cold and just lost it.  I had a knife and just slammed it on the floor...it shattered. I paced the lounge, crying, and ranting...my dog was whimpering and pacing with me.  I said to myself..you are on the verge of losing it...completely going mad.  The thing was I knew this wasn't me..I could see myself  and hear myself as if I was watching a play.  My body was so cold and shaking...and then the cottage walls seemed to be closing in..I got scared.  I sat myself in the corner..sobbing.  I did call a friend to help...she came with hot water bottle, rescue remedy and calmed me..

We talked of how we are independent women, appearing strong and warrior like..taking everything thrown at us in life...being positive etc.  and yet just every now and then, we lose it... We just want to give up...share the load...just occasionally.  And yet there seems to be so many women out there on their own..dealing with some big stuff in their lives.  There has got to be a higher purpose for this...I trust that.

I have no idea whether it was the doctors visit, energies, planets, writing about my past..clearing old emotions out or what...but a few hours later it felt like a huge weight had been taken off me.  I was exhausted and drained.

Yesterday/Today is a completely different day..positivity again...emails, telephone calls, texts, Facebook conversations, even a possibility of some work if I am able.. we will see.

I'll finish off with this idea..I came across it this morning and I think its a wonderful idea by the author, Elizabeth Gilbert! 

JAR OF HAPPINESS. She made a vow that every night she would write down the happiest moment of the day and save it forever.  She fills a jar with scraps of bills, mail, bits of paper with something written on them, sea shells etc  

It takes 10 seconds to preserve the simplest and happiest moments...so join me in getting a jar, decorating it and filling it with JOY!  :)  

Namaste!

XX

More healing....

Another Long absence from blogging.... Have been healing nicely hopefully..building up my stamina and fitness slowly.

Still lots of stuff surrounding motherhood occurring. A little while ago an ex client of mine asked me if I would do some reflexology on her, to induce her labour. She was a little overdue and I had helped her in this way before. I was hesitant due to my fitness and energy levels but synchronicities kept happening between us as so I agrees to do it as a friend. I was intrigued as to whether I would be able to intuit the energy...And it was amazing.. I found that I could communicate directly with the baby, feel its spine and head..gently encouraging it to ease into the world. Beautiful experience.

 And then I met an ex partner of mine and his girlfriend at the chalet we both still share. We initially bought the chalet after travelling in Europe and I fell pregnant and needed a base in the uk. It was all we could afford to live in and it was to be our family base. Sadly, I lost that baby, together with a handful of other souls whilst living there. To see him and his partner at the chalet, bringing in new energy into the space was bittersweet. Of course, it is wonderful, she is a beautiful, blossoming mother and when I hugged her and her bump, there was nothing but love and sisterhood between us..but then as we all sat looking at the river, talking...I couldn't help but notice a stirring within, of sadness and loss. It wasn’t until later that day, when I sent him an email, the emotions and grief surfaced and released. In my sharing of this in my email...whilst the sensitivity of it could Have been a source of separation, it has actually become a source of connection. Remarkable...and humbling.

 In amongst the last couple of weeks, there has been little cocooning... I have been away, visiting friends, trying Out new things, new connections :), exploring ideas on healing, attending events and having friends stay with me. Seems very busy and It has been. Seems that life didn't want me to hibernate in my cocoon after all..even ejected me one night with flickering a light on and off whilst I was trying to sleep in there!  Spooky Friday 13th Phenomena.

I have been inspired by watching the healing matrix movie, about quantum physics..the 'new' science that says that all disease and illness is caused by distortion in our energy field...and with intention, this can be transformed. Many doctors and scientists speaking of their particular modality...much impressive research. I do feel like I am On some sort of hamster wheel though... Haven’t I done that, been there? Got frustrated..and of course, that very Frustration is a negative emotion that can cause distortion! Aarrrrgghhh!

More surrender and acceptance....

In any case, I am researching each of the modalities’ it talks about, have written to the doctors and scientists Based in the uk.. Will see if any particular one draws me... I just know there is a key there somewhere..

Will feed back on this soon..

Namaste X

Spring..Stages of Life!

Wow... what beautiful Spring weather.. I'm not one for the heat of the sun.. but this early spring has been amazing.. have been enjoying recuperating at my retreat and cottage, and enjoying the company of a girl friend and going to a concert/sound healing.

This week there have been many discussions about purpose of life, inspirations, positive attitudes and optimistic outlooks..

One in particular was with my doctor yesterday... he hadnt seen me for a while and was interested in the surgery etc and asked how I was coping  with such a 'rare illness'...he made the sympathetic sounds and showed concern...  saying it must be really hard to face all this, especially without a partner..who was I talking about stuff with etc...   Phew!  I sat there..and thought it was quite funny really... I had been really positive and optimistic about things but appreciated his interest and care.  I told him how I saw things, that I had many friends and family that love and support me and about the RP forum, where the relatively few of us with this, can share information and support each other.    I acknowledged that I sometimes did dip but generally I thought that there were much worse things to have in terms of illness...such as paralysis, a stroke, cancer etc.  He seemed generally pleased that I was so positive.

All good....and then today!

I went again to the doctors to have a routine blood test..laughing at myself for stupidly wearing white today!  All was fine and then this really old lady slowly came in the waiting room....she was so fragile and weak...with two helpers with her.  And yet, she had such determination to get to the seat she chose...amazing inner determination.  I ear-wigged on her conversation and felt such love for this wise, old woman.  She was talking about her new accommodation.. her window outlook etc...

Then came in several pregnant ladies... all at various stages.  There must have been a clinic on... each one smiling, happy..if a little flustered in the heat.  One brought in a baby in her carry cot...every one oohed and arrred over the cradle.    Then a 'busy' mum came in with 4 little girls...all absolutely beautiful from between 3 and 6...  All had long wavy, blondish hair and various dresses, caps and little shoes.  One was called Holly, another Meadow!  What a wonderful name!  Delightful to watch them all playing...wanting the loo, but playing amongst themselves.  They were exactly how I pictured my little girl(s) would look like.,,when i was younger. 

I sat there and saw the various stages of life in front of me...and somewhere out of the depth, I burst into tears! I had no warning...but the tears flowed!  I gulped them down as best as I could..luckily some music was playing and i was at the back but still..it was noticed.  i tried to read posters on the wall, leaflets on the rack..Lots of thoughts came and went...right from wondering if I would reach old age, if so, who would escort me to the doctors, where would I live....then looking at the pregnant ladies..seemingly i would never experience how it is to be fully pregnant in this lifetime...not experience child birth.    Tears kept on coming!

Luckily the nurse called me very soon...I just about made it to her room when the next flow came...I just stood with my head in hands and sobbed..with her calling me sweetheart, touching my arm...showing such concern.   I reassured her I was ok about the blood test...and shared what had over-whelmed me.  Phew!

The nurse not knowing me that well, said about not too late, adoption etc etc... and I had to tell her about my medications which would prevent me trying, my miscarriages in the past, and that realistically was I even fit enough!   I also acknowledged that I am blessed that I have cared for children in my life time and that I have been able to experience so many things because I didnt have children..like travel the world etc.

As quickly as it arose...once i had spoken it to the nurse..it all subsided!  Amazing emotion running through though for those few minutes... another clearing and I am sure some more still to do on that subject.  

The needle hurt today...I must have been ultra sensitive too!

Big sigh...but all good...

Namaste
X

Returning to the body...Dis Ease...

Been spending the last few days getting used to this 'new' body.  I had been feeling quite cut off, hard to feel any energy, less sensitive which I am just not used to...and now feel wonderful.

Interesting to note that after surgery I didnt like my solar plexus area to be touched in any way...I tried to go through the resistence but it was painful for someone even to hover their hand over that area.  This is where the umbilical chord is cut off at birth..it is the energy line to the astral plane...this is where we leave our bodies when we enter sleep and the route in which we return on awakening..     I didnt ever pay much attention to astral travel and the like but I am feeling that I left my body during surgery and although I had returned to some extent....it has taken a while for me to get fully back into my body!  It was definately blocked in some way..or I was resistent to coming back.

My blood sugar levels have also been all over the place...so craving sugar and crappy food!  The solar plexus is also linked to the Throat Chakra..wondering if my body was trying to use food to ground me more?

In any case, with some beautiful loving energy, love making (a most powerful way to bring back energy), gentle encouragement, touch and massage..I now feel more here and so alive..able to cope with the internet a little more and write a blog.  On my own once more, i have returned to my cocoon, self massaging with arnica, lavender, going within, talking with my trachea, immune system, breath work, reading, Chi gong, Tai Chi, The Form..and just being.

So... whilst healing, I am looking at why create a throat problem in the first place.  Throat is about 'hiding my truth'...my throat has been constricted... What in life is constricting me?   Need to express it!  Yes, feel as if I have been there, done that....but feel the desire to re look.. 
 
Dis ease is an agent of transformation...we transform when we re cognise with our deep purpose...not necessarily 'cured'...sometimes it is how it is!

As a start.. for anyone with a dis ease... look at  this question.. "What are the advantages of being ill?"  Be honest!  Its surprising what you write...

For me:

It has given me 'space'...time...
I have received love, support, tenderness, attention
It has taught be empathy for others
It has given me some sort of purpose and identity!
I feel more devotion to life
More awareness
Humbleness
I have learned to be more surrendered and to have acceptance of what is.

Hmmmm...

I could re look at when it all started...any triggers.... yes .. can see things..but still not the whole picture!

I feel Its about me hiding my truth.... can I be ME... express my truth to ALL..including family - parents!  hmmmm....

I also get saddened when I read of others' despondency and distress at their prognosis of an illness...I too have been there..still creeps in occasionally...  I want to talk to them of acceptance and surrender to what is...look at the higher purpose, bigger picture etc...spirituality, tools and meditation, visualisations, exercises etc... but how will this be received?  Is it preachey, lecturing? arrogance, whacky..who am I to say such things?  I think it was only a couple of weeks ago i was so 'down' about having RP..what was the point in surgery if the constriction might come back...there is no cure bla bla bla.. I was telling myself...I am so not perfect!

Yesterday I received an email from someone saying they were inspired by my journey...today someone said they were in 'awe' of my life...  I find it so hard to hear...and accept that I am perceived to be different...I am not..this 'life' is not special...all life is special!  I have spent all my life trying NOT to stand out, to be part of the crowd, hidden, not special - mainly because i was always told as a child that I was 'special' because i was chosen (adopted) etc.  I shake my head!

And yet, I have chosen some 'different' paths..taken opportunities 'out of the norm'...lived in unorthodox ways, even put myself 'out there' by writing a blog!    Paradoxical!  Some may say it is inspiring..others might ignore...a few might well just cut me off...am I ready for that too!  What is all this about? 


Much to explore and I am excited and in trepidation as to the possibilities ahead....much newness entering this life...newness of breath, voice, purpose...courage... Loving it all in this moment.

Namaste
X

Angels Everywhere....

its 4am..I woke up with the wind and rain doing its thing on my roof window..I tried to wrap the duvet around me tighter, to close my eyes and disappear into dreamspace but the wind has howled me to sit up and write....

There are angels everywhere..around us..living with us, supporting us and loving us.  I dont just mean the "winged" variety, beings that hold us and encourage us from another realm.  I am blessed to have angels that have come into my life, to touch me in some way, gift me their love in whatever form or shape that is...

Every single person that has come into my life has gifted me their love and shown me something...enabled me to learn something, grow...some are no longer in my life..that is ok too.  Even though we are no longer in contact physically, I think of them and am grateful, love them for what they have gifted me.  They are all angels!

I woke with tears in my eyes...because after each sleep..the date for surgery gets closer..and I am human, i feel afraid and wonder what the outcome will be.  Its not a "why me?" ..why not me!?   Its more of a "shit",..is this one of the last days I will have a voice to talk, scream, shout and sing with?  Will i experience pain after surgery?  What will I wake up with?  Will I wake up after the anaesthetic?  There is no despair in this..but there is a seeing of the fear, a gentle feeling that we have no control..its all unknown.

Back to the Angels..in my awakening all those years ago..I was given the choice to have surgery to remove blood clots or risk them dislodging and going to my lungs.  I was afraid of the surgery and didnt want it..I had been experiencing another state or realm and was no longer afraid of death..so just wanted to be left alone and to trust in life.  However, my then husband was terrified...he wanted me to have surgery..exhausted after another hour or so of him trying to persuade to to agree to surgery..we held each other..  I fell 'asleep' in his arms..I could feel them around but..but I could also feel something else..something far bigger wrapping around us both, holding us both.  There was a warmth, love, essence that enveloped the two of us..  I opened my eyes and knew it was all ok.  The fear had disappeared, I felt serene, calm, at one and nodded my agreement to surgery...my husband breathed a sigh of relief!  A little while later, the consultant came and said they had had a meeting and had decided that surgery was not the right thing to do now!  I think I might have laughed!  :)

More "earthly" angels are giving me so much right now...each with their unique gift of love.

They have stepped in to ensure that I have followed up appointments, physically supporting me with their masculine authority, holding me tenderly with their feminine sensitivity when I needed it most.  One has continued to step forward with such unconditional devotion and love, I have been humbled to tears.  Another has come forward to bolster me up when I have gotten down - given me some straight talking, humour, even distraction when necessary - as well as love through touch and massage..just sharing space with me.   Another has shown me different tools for healing, encouraging me to stay in this body and not escape to my beloved cosmos.  Others are supporting me in practical ways..friends are dipping in and out, checking in, giving me words of support, encouragement, hugs, their gifts, love as and when they can...and then there are more virtual friends..again giving me their love..just using another form.

All is energy..all is love.

I am so blessed and grateful for each and every one of them..each and every one of you!

Namaste

XXX

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

Feedback Sought? Next Step?

Hello blog readers...

Half way through my course of Steroids and I am feeling so much better! The not so nice side effects are almost worth it! My ears have calmed down and to my surprise my breathing is a tiny bit easier! Thats a first with any kind of conventional drug!

I know that the steroid use can only be a temporary measure - I dont want to be on them long term... I know that I can reverse this auto-immune response as I triggered it somehow in the first place..that

Everything i have tried so far has helped me go deeper, get to an issue deep within, a journey if you like, self discovery into the mind, emotional, spiritual body..but still my breathing is an issue. There has to be a key I can reach in there!

I have tried Drugs, Acupuncture, kinesiology, herbs, homeopathy, Buteyko Method, EIS Scan, voice training, meditation, stress relief/relaxation, massage, healing etc.. I am sure I've missed some!

The only thing that has helped is diet..changing to a more vegan diet definately helped with the cancer scares and reduced the number of cartlidge flare ups! Although, this hasnt really helped my breathing in any way.. Tried dairy free, vegan, gluten free, avoiding certain known trigger foods etc etc....

So.. looking at all manner of things..came across The Silva Method, The Journey, NLP, Hypnosis, EFT, Alexandra Technique so far.

If any of you know of any good practitioners, off-the-wall bods that might be worth a visit or have any experience of any of the above, I'd love to hear from you. Anywhere! I'm sitting with it all and seeing if anything 'speaks' to me as to where to go next...

Namaste

X

Rested...Frozen ground..frustration..Wood Peckers!

Well, a better nights sleep thank goodness! Ear's are still painful so a visit to the GP for photo's to be taken! Given a course of steroids which I will take just to see if I get some relief from the breathing problems as well! Poor Milo hasnt had a proper walk for ages..:(

Whilst there, I mentioned I had found some info on another drug being used for autoimmune problems - and handed over some internet links/paperwork to give to my usual doctor to add to his research on RP. I am afraid to say, it was not received well, almost laughed at and disputed - even before I had said what the drug was! So.. not a positive attitude but I know that my usual doctor will give it a look.
I sat and cried..asking her what I was supposed to do...hospital consultants admit something is wrong but are unable to diagnose...I am 42, and struggling at times! She just looked at me sympathetically!

so, steroids ready to take, awaiting even more blood tests next week..I came home, got Milo and forced myself to walk across the frozen fields! Taking the farm dog along as well to give Milo more exercise in their chasing each other. I ranted, huffed and puffed (literally!), and cried. I know that a 'diagnosis' is not the real answer, I also know that I have 'fallen off' the vegan diet, have new herbs to take, I also know I am due to bleed - all these things have an effect!

I then sat by the stream, did my Cobra Breathe Meditation and listened to the wonderful sounds around me. The sun was quite warm on my face, stinging my ears a bit..but it was worth it.

There was a wood pecker in the woods - made me remember that a wood pecker visited my peanut stash in the garden yesterday! Looking this up shamanically:

Wood Pecker is connected to Native American drumming, they also dig into trees to find bugs and grubs to eat which denote digging into something, the art of discrimination and increased analysis. it also has a peculiar way of flying with a rhythm and manner unique to itself. all this serves to say, be conscious of flying to your own rhythm, and don't be afraid to dig in to make the best choice for what is right for you, sometimes it also means you need to drum up a little change and get some renewed rhythm! Knowledge of personal truth. Inner strength. Mentally strong.

Hmmm! Indeed, will have to dig in and make best choice for me...whilst taking these steroids to give me respite, I know I need to be looking at something that goes into my sub-conscious level..to the root of this issue... Journeying, The Journey, NLP, EFT, Hypnosis,.... :)

I dunno...but its coming!

Namaste for listening!

:)

Diagnosis (ish), Magical moments, feeling my old 'master'

A few days again since I last wrote...  my doctors have finally said that they feel that I probably do  have relapsing polychondritis..which is an auoimmune problem, where I am attacking my own cartlidge.  Not a nice condition, its progressive for which there is no 'treatment'.  However, I know that on some level i created this condition so I truly believe that I can reverse it.. A life of relieving drugs and drugs to combat the side effects of those drugs I am sure is not the answer.  Whilst i await the various scans to access the progress of the disease, I will go in and love it through, release whatever issue, trauma or emotion I have taken internally.    Being more stricter on my vegan diet, having an 'alternative' body scan next week and just know that the right practitioner, path will show itself.. at the right time.

Yesterday, after being with the Doctor's, I met a 'new' friend at a country pub (yes ok a date!),  it was a stunning day so we sat outside, clear blue sky, hot sun showing the autumn colours in the trees.  The river was swollen from all the recent rain and above us for most of our lunch, was a group of buzzards, circling around, crying to each other..  stunning next to the clear blue sky.  Magical, Magical...  really showed me how blessed I am to be alive...  (the date?  well nothing romantic there but a great new friend that lives locally!)

I re-arranged the furniture in my cottage today.. like I wanted to 'start afresh' you know..  and cleared out the boxes that I had been hiding behind the sofa.  These were my last 'master's books...some of them very personal to him which he has left here as he lives abroad now.  As I took them out, and looked at them before putting them onto the bookshelves, each one brought to my mind a picture of him, our time together,..how blessed I am to have had that..how honoured I am to look after his books.. I plan to read many of them over the coming winter months.

Vulnerability..surrender....

A while since I last wrote...largely due to just about keeping it together..   My breathing now is very bad..and was awaiting news of whether I could have a ct scan to check out my throat...but the answer was no..a bronchoscopy was the only way.   all my instincts and other people with RP (relapsing polychondritis) are saying dont go there as the test can make things worse..and a ct scan is just as good..  So  a visit to my own GP again who agrees with me and now I await to see what is the next step.. so frustrating.

On the one hand, this is just my body..the vehicle and in truth, 'should' not identify with the weaknesses, aches and pains etc.. but when it comes down to your actual breath...this is so hard to do.  As we need to breathe every second..its not something, I can forget about really..it has an impact of every aspect of my life!

Of course, full moon, equinox, solar flares, my coming bleed all playing their part in this...all good really..but feels like I couldnt really cope with much more..feel very vulnerable.  would love a cuddle!

I have some employment law bits to work on though for next week...so work hanging in there..just!  Theres even potential of an office on the ground floor..or work from home with a new project... so yippee!  Tomorrow I will try to get Milo out (hes been restless bless him being on so many shorter walks)...in to the woods... healing woods...

Last night the sky was amazing.. it was really calm here...beautiful skies.. but everything was eeerily quiet, the birds suddenly stopped their singing..and in the distance, you could see flashes of lightning.. but no sound or any rain..weird.   Its been on the local news today, as so many people thought the same.

So..short and sweet tonight...  going to get some nourishing food and bunker down....

Love..

3am hot drinks...visiting virtual world and rare diseases.

Yet another night of disturbed sleep...woke up struggling for breath again and a really annoying cough..sure next door can hear me so get up for a hot drink..that helps a little..  Its now 4.30am.

Since my last blog entry, I've been in contemplative mood and have gone through many realisations about myself, my relationship with Mother...my birth mother, adoptive mother, absent birth father etc etc....  connections with trauma at early age etc.... all ok and real..recognising that maybe I have some more layers to explore....

On a more physical level though, my breathing issue has become so chronic, I have been re-exploring my medical history and fear that the suspician last year that I might have Relapsing Polychondritis might well be the cause of the breathing stuff.   I shake my head... because in labelling it, even like this, is like establishing it..  Its a terrible disease where the immune system attacks the bodies cartlidge..last year, my ears started having symptoms..but at the same time I had a cancer scare so decided to tackle things with diet... I went vegan. and that seemed to sort everything out..BUT my breathing issues remained... and have gradually got worse and worse.

The consultant last year said to me...you would be so unlucky to have RP, its so rare..I dont think you can have it...  I remember at the time thinking, yeah...well that sounds like me!  But there was no way I would have taken the drugs that people with this are put on.. so I didnt pursue it and went a  different route.

Anyway, having read up on how RP affects the trachea/larynx, I have to say I am displaying classic signs and that is depressing!  There is no cure..and prognosis dire BUT I also know that we create our dis ease..adn I am sure I can reverse this.. it feels like I am getting close to the root cause, adn thats why my breathing is getting so bad... its like its last fight!

I am tired, just sighed heavy and held my head!  NOOOO!  I wont be defeated...  So to be practical I am seeking advice on what medical tests I need from other sufferers and going to go back to 100% veganism..I have no choice.  I already have some 'alternative' tests lined up over the next few weeks and will continue with my usual routines s much as I can...  tai chi, meditation, getting into the woods no matter how hard it is getting to get up the hill! 

If anyone knows of any 'out there' practitioner, healer, therapist, psychic, therapy, diet..whatever, that comes to to you as a possible lead for this, I'd appreciate hearing about it..    So far, the right practitioner has come through at the right time over the last year or so... they all seem to be quirky, different in  some way.. but each has taken me to a new level of understanding of my body, emotional stuff etc...  your bog standard 'therapist' doesnt seem to cut it with me anymore....  

oh joy!    I do love life!  I do want to breathe!   I do want to be here!  I DO!