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!
Friday, 16 September 2011
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
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
Monday, 5 September 2011
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
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
Thursday, 1 September 2011
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...
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