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.
Monday 31 October 2011
Friday 14 October 2011
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!
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!
Tuesday 4 October 2011
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!
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!
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