Monday, November 15, 2010
Monday, August 23, 2010
Raw and gutted.
It's hard to keep my chin up all the time.
My doctor's are worried about my wrists and my heart. If my wrists continue as they are, I've been told that soon I'll 'lose them altogether'. Which doesn't sound good to me.
I, on the other hand am constantly reminded of how miraculous it is that I have improved this much. If you've ever been sick, with very little hope, and you start getting better, the world is a very diffferent place; I have to pinch myself every day.
I've been blindly hoping that my wrists will follow the rest of my body's lead, and get better. But my Doctor's aren't on the same page. Their concern has got me worried.
I've got a deadline of 4 months from today to get healthy, before I have to re-consider my other options (chemo, biological drugs etc).
This has hit me rather hard.
My doctor's are worried about my wrists and my heart. If my wrists continue as they are, I've been told that soon I'll 'lose them altogether'. Which doesn't sound good to me.
I, on the other hand am constantly reminded of how miraculous it is that I have improved this much. If you've ever been sick, with very little hope, and you start getting better, the world is a very diffferent place; I have to pinch myself every day.
I've been blindly hoping that my wrists will follow the rest of my body's lead, and get better. But my Doctor's aren't on the same page. Their concern has got me worried.
I've got a deadline of 4 months from today to get healthy, before I have to re-consider my other options (chemo, biological drugs etc).
This has hit me rather hard.
Monday, July 5, 2010
Dreaming
Life has been sobering over the past few years.
Firstly, I found that my wings were not as powerful as I had thought, and now as things settle down I find that fine tendrils of ribbon are keeping me from soaring freely.
This challenge has changed everything about my life, and that has taken some getting used to.
Most of all I have had to alter my dreams. And I've discovered that it's not a bad thing.
When I was first hit with this pain and weakness, my future plans came crashing down around me and I felt completely terrified and alone.
I had previously had a very active dreaming existence, where I planned to move here, holiday there, do volunteer work elsewhere. I was competitive and wanted to do everything (and do it well). My dreams roved, unleashed and chaotic.
It has taken time and a different kind of strength to realise that this physical setback has helped me to focus on what is really important to me.
Now, I have limits.
Now, I am much happier than I have ever been.
Firstly, I found that my wings were not as powerful as I had thought, and now as things settle down I find that fine tendrils of ribbon are keeping me from soaring freely.
This challenge has changed everything about my life, and that has taken some getting used to.
Most of all I have had to alter my dreams. And I've discovered that it's not a bad thing.
When I was first hit with this pain and weakness, my future plans came crashing down around me and I felt completely terrified and alone.
I had previously had a very active dreaming existence, where I planned to move here, holiday there, do volunteer work elsewhere. I was competitive and wanted to do everything (and do it well). My dreams roved, unleashed and chaotic.
It has taken time and a different kind of strength to realise that this physical setback has helped me to focus on what is really important to me.
Now, I have limits.
Now, I am much happier than I have ever been.
Monday, May 31, 2010
The Handless Maiden
I see a chiropractor named Fred now and then, who has done wonders for my back, neck and jaw. I was complaining to him about my wrists one day, which are still swollen and can be frustratingly weak. At our next session he lent me a book called The Fisher King and the Handless Maiden, by Robert A. Johnson.
The Handless maiden is an old fairy tale about a miller who is overcome with hardships. He makes a pact with the devil in which he promises to exchange whatever is behind the mill for material wealth.
He does not realise his daughter is behind the mill. When the devil returns the hands of the 'young maiden' are chopped off in order to fulfill the bargain made by her father. The 'Handless Maiden' is devastated, and after some time runs away from her home and begins a long journey of self discovery ... where she learns to live independently, on her own terms.
The first part of the tale is a meditation on trickery and powerlessness. Her father had not known the true price of his deal. The Handless Maiden loses her ability to be a player in her own life.
The second part, the maiden, now a woman and later a wife, finds the strength to redefine her circumstance, to be brave and reclaim her own sense of power and wholeness. She is no longer taken care of, restricted or dependent.
I think about this myth, and I connect with parts of it, but for some reason I cannot grasp the meaning all at once, as a whole. It kind of numbs my brain. Was I the 'father' that cut off my own hands? Was it self sabotage?
But, on the other 'hand', I don't think the placement and identification of blame helps much. The book inspires me to find strength within myself to be happy with how far I have come, and keep exploring, meditating and being true to myself.
The Handless maiden is an old fairy tale about a miller who is overcome with hardships. He makes a pact with the devil in which he promises to exchange whatever is behind the mill for material wealth.
He does not realise his daughter is behind the mill. When the devil returns the hands of the 'young maiden' are chopped off in order to fulfill the bargain made by her father. The 'Handless Maiden' is devastated, and after some time runs away from her home and begins a long journey of self discovery ... where she learns to live independently, on her own terms.
The first part of the tale is a meditation on trickery and powerlessness. Her father had not known the true price of his deal. The Handless Maiden loses her ability to be a player in her own life.
The second part, the maiden, now a woman and later a wife, finds the strength to redefine her circumstance, to be brave and reclaim her own sense of power and wholeness. She is no longer taken care of, restricted or dependent.
I think about this myth, and I connect with parts of it, but for some reason I cannot grasp the meaning all at once, as a whole. It kind of numbs my brain. Was I the 'father' that cut off my own hands? Was it self sabotage?
But, on the other 'hand', I don't think the placement and identification of blame helps much. The book inspires me to find strength within myself to be happy with how far I have come, and keep exploring, meditating and being true to myself.
Friday, January 29, 2010
Its a new dawn, its a new day, its a new life for me
and I'm feeling GOOOOOOOD... or at least a whole lot better!
I'm really happy to say that I think all the hard work is starting to pay off. I'd say I'm now 6.5/10 on 'Vic's Healthometer'. I'm aiming for 10/10. It's just my wrists that are lagging behind now. I'm seeing my doctors next week, and I'm hoping to adapt the treatment slightly so that my wrists settle down. At my last visit there was talk of low dose steroids to bring it under control, but I hope we don't have to take that path.
I'm so happy that I found this way of treatment... I've joined an online group called "The Road Back Foundation" (http://www.roadback.org/). This is a great source of information for anybody interested in non-traditional treatment for auto-immune disease. I am surprised by how closed minded the mainstream Rheumatologists are, and I am beginning to believe that the pharmaceutical world is partly responsible for obscuring successful treatments in favour of more expensive, complicated treatments (that eventually cause more ill-health due to side effects and dependence).
Gerald and I went to Rainbow serpent festival last week and had a brilliant time - a 3 day festival was something I could not even have considered 6 months ago.
Life is going well. Let's hope I continue this momentum.
Sunday, January 10, 2010
Sunshine and the beach
My best medicine is being by the beach.
Gerald and I had such a great time on the Sunshine Coast that I'm seriously considering a sea change. We're back home after a weeks holiday with Dan and Troy, and Melbourne has welcomed us with a scorcher. The heat is a good thing, but 45'C might be too much of a good thing! Pool time is high on the agenda.
I'm starting to notice a steady (and gradual) improvement. I really feel so much better than I used to. In my mind I feel completely healthy. Physically, I feel about 6/10. I can sleep soundly, walk without limping (mostly - stairs excluded), dance. This is a great feeling! I can't remember what it felt like to be in the pain I was in 6 -12 months ago.
I remember being told (twice) by a highly respected specialist that he hoped I didn't mind him saying, but he thought I was 'a very, very sick young woman'. He never even saw me at my worst. I remember Mum and I coming out of that meeting so overwhelmed that we sat down in a cafe with tears streaming down our cheeks. It was awful. It must have been terrible for Mum - was my health really that bad? What was going to happen to me?
That feels like a different time. Of course, there are still countless things that G helps me with. I tire very easily, have no strength and puny muscles. Food is a real challenge - I'm being very strict again after a few champagne-type lapses over christmas/NY. Going out for dinner is really hard/impossible - especially the salicylate avoidance.
I saw a 'healer' when I was on the Sunshine coast (I'll try anything that may help). She helped me identify some of the thought patterns that allowed me to get sick in the first place. What we think has a huge influence on our health or illness. Thought is the biggest source of power we have to heal ourselves.
Now I'm going for a swim.
Gerald and I had such a great time on the Sunshine Coast that I'm seriously considering a sea change. We're back home after a weeks holiday with Dan and Troy, and Melbourne has welcomed us with a scorcher. The heat is a good thing, but 45'C might be too much of a good thing! Pool time is high on the agenda.
I'm starting to notice a steady (and gradual) improvement. I really feel so much better than I used to. In my mind I feel completely healthy. Physically, I feel about 6/10. I can sleep soundly, walk without limping (mostly - stairs excluded), dance. This is a great feeling! I can't remember what it felt like to be in the pain I was in 6 -12 months ago.
I remember being told (twice) by a highly respected specialist that he hoped I didn't mind him saying, but he thought I was 'a very, very sick young woman'. He never even saw me at my worst. I remember Mum and I coming out of that meeting so overwhelmed that we sat down in a cafe with tears streaming down our cheeks. It was awful. It must have been terrible for Mum - was my health really that bad? What was going to happen to me?
That feels like a different time. Of course, there are still countless things that G helps me with. I tire very easily, have no strength and puny muscles. Food is a real challenge - I'm being very strict again after a few champagne-type lapses over christmas/NY. Going out for dinner is really hard/impossible - especially the salicylate avoidance.
I saw a 'healer' when I was on the Sunshine coast (I'll try anything that may help). She helped me identify some of the thought patterns that allowed me to get sick in the first place. What we think has a huge influence on our health or illness. Thought is the biggest source of power we have to heal ourselves.
Now I'm going for a swim.
Thursday, December 17, 2009
Treatment commenced!
I've seen the 'guru' doctor and naturopaths.
I've commenced the treatment.
And I've had the expected flare up.
In simple terms, the therapy involves diagnoses of the incriminated bugs. Then treatment using (very small) pulsed doses of antibiotics.
The bugs I tested positive for include lymes, cytomegalovirus and C pneumoniae. Although these bugs may be present in many people, my immune system has been overloaded and these bugs produce symptoms of arthritic pain and fibromyalgia in my body. It is really interesting, that the last time I had a cold or flu was over 2 years ago (I used to get 1-2 colds a year - and I spent a year in London on the tubes with no cold!). Any bug I interact with will always head straight for my joints and cause problems there. In fact, my 'guru doctor' said that when I start getting colds again she will be happy, as it is a sign my immune system is operating properly. But what about antibiotic resistance, huh? I hear you say... AB resistance is very rarely an issue, as these AB affect the soma of the microbe rather than the cell-wall.
Treatment: I have started on 1/4 pill on Mon, Thurs and Sat. This regime attacks the bugs on the days I take the meds, then allows my body's immune system to step up on the days I don't take meds. I started with 1 AB, have added a second, and will add a third next week. Each new AB gives my body a flare up.
Overall, I think I'm starting to notice an improvement. I find myself doing things now that I couldn't before: I can reach for a glass of water on my bedside table; put a seat belt on; yawn (this has been a big thing for me!); the list goes on. I even managed to go on a walk/run a few weeks back(!!!), before I had my recent flare up.
My fast response to treatment is directly related to my Chiropractor, massage therapist, singing teacher and strict diet. Thank you, thank you, thank you :o)
More on that stuff later.
I've commenced the treatment.
And I've had the expected flare up.
In simple terms, the therapy involves diagnoses of the incriminated bugs. Then treatment using (very small) pulsed doses of antibiotics.
The bugs I tested positive for include lymes, cytomegalovirus and C pneumoniae. Although these bugs may be present in many people, my immune system has been overloaded and these bugs produce symptoms of arthritic pain and fibromyalgia in my body. It is really interesting, that the last time I had a cold or flu was over 2 years ago (I used to get 1-2 colds a year - and I spent a year in London on the tubes with no cold!). Any bug I interact with will always head straight for my joints and cause problems there. In fact, my 'guru doctor' said that when I start getting colds again she will be happy, as it is a sign my immune system is operating properly. But what about antibiotic resistance, huh? I hear you say... AB resistance is very rarely an issue, as these AB affect the soma of the microbe rather than the cell-wall.
Treatment: I have started on 1/4 pill on Mon, Thurs and Sat. This regime attacks the bugs on the days I take the meds, then allows my body's immune system to step up on the days I don't take meds. I started with 1 AB, have added a second, and will add a third next week. Each new AB gives my body a flare up.
Overall, I think I'm starting to notice an improvement. I find myself doing things now that I couldn't before: I can reach for a glass of water on my bedside table; put a seat belt on; yawn (this has been a big thing for me!); the list goes on. I even managed to go on a walk/run a few weeks back(!!!), before I had my recent flare up.
My fast response to treatment is directly related to my Chiropractor, massage therapist, singing teacher and strict diet. Thank you, thank you, thank you :o)
More on that stuff later.
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