Sunday 19 September 2010

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!

1 comment:

  1. Well done YOU!! It's hard not giving up but the rewards are bountiful even if they don't arrive in the packaging we thought we wanted.

    Much love Dear One,

    Di

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