New doctor, new journey

13. July I went for my first appointment with a holistic GP at the Balder clinic. In their own words, the premier clinic in Europe for functional medicine. And I have to say this – they have a very different approach, compared to a standard GP. It costs quite a lot more, as it’s not part of the official health care system, but the attitude towards me as a patient is also vastly better. As this was my first time, we had 90 minutes. 90 minutes where my medical history was recorded, and she was digging into childhood issues as well as family issues. Afterwards I filled 13 of those blood test tubes, got test sets home for 24-hour urine sample, two day fecal sample (with instructions and everything going needed to send it to the lab in Denmark), and paperwork for a gluten/celiac blood test. Which I will take after 3 weeks of eating gluten to make sure there is a reaction. I had a croissant the first day, which was absolutely delicious. After 30 min I was queasy, and then my legs became more painful than they’ve been in a very long time. It’s now been 11 days with daily gluten intake, and I’m very happy I’m almost halfway through. Those blood tests better show something, because my mood has changed – and not for the better. I am constantly itchy, it’s like I’m itching inside my blood vessels, and it’s rather horrid. I don’t sleep well, and I’m constantly tired. More exhausted than I usually am, more forgetful, more zonked out. But it will be good to come to the bottom of this, and hopefully find a way towards at least some healing.

I’ve also got a tip on a good chiropractor, so I’m going to call him tomorrow. Maybe he can convince the renegade disc in my neck to align properly. A disc started sliding last winter, so it’s squeezing the spinal chord, which is affecting both arms, but especially the right. I can hardly carry anything anymore, and that’s very wrong (I was nicknamed “Mother of Force” at a former workplace, not much of that left now). Also annoying as I’m right-handed. Anyway, the specialists won’t operate until there’s no other option, and I really don’t mind. I just want my body to work… So fingers crossed for the chiropractor!

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Victoria’s toiletry bag 

My son’s girlfriend turned 18 4th July, and I knew I wanted to make her something. They’ve only recently got together, so I don’t know her that well yet, but I figured a toiletry bag would be OK. Checked with her mum for favourite colours (baby pink and white), found that those are in severe lack in my stash, but got this pieced together anyway. I had some leftover HSTs from a previous project. She was thrilled to bits, something that made me very happy.

The height was decided by the size of the HSTs, but in the end I found it could have been taller. I made a toothbrush pocket, but a grown-up size brush is too tall. Oops. I guess that’s the way it goes when I just sew and don’t plan properly in advance. But, as long as she is happy with it I am too. Next time I might take the time to think through the design before I make it though, because there will be more.

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Jo’s bag

A couple of weeks ago I had a fun project. A friend from London came visiting, and on Monday we went to Klässbols linen weavery. Great fun, and the looms were running. Those things have an amazing rhythm! I was walking around totally absorbed by the sound, hearing all kinds of music. In the shop we found a lovely 2nd grade table runner. I have no idea what was wrong with it, maybe the width was wrong or something. Very graphic and great start for a bag. As it was a 2nd, it was pretty cheap.

During the week, in between shopping and chats and walks and meals and concerts I constructed a bag. That is, thought it out, and made all the parts.

Sunday morning this is what I had.

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Here it’s coming together. I made a key ring to attach to the key fob.

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My Bernina is amazing! She chugged through all these layers without complaining.

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No pics from the final construction, but here is the final result on the recipient’s shoulder. With leather straps hand sewn in place. I’m quite happy with the result, I might just have to make more…

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In the two weeks that have passed since the bag was finished it has got a lot of wear, and I’m happy to say that the recipient is rather pleased with it. All the pockets and the amount of structure incorporated makes a very useful and easily organised bag. Woot! I’m chuffed to bits.

I need a new trip to Klässbols, I think.

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By Cobra’s order

In my Quantum Dreaming course I have found Cobra is an ally of mine – and when I first met her she scared me witless. She’s been showing up in subsequent drum journeys, a couple of weeks ago she showed up in my Mystical Library, where I went to retrieve the story I most needed in my life at this moment. Among other things I was told to draw. A minimum of 30 minutes each day. Other creative outlets might present themselves, but it was imperative that I draw each day. I have to confess, there were days that ended up being too busy, but on average I have been drawing much more than 1/2 hour daily. Mostly I have been drawing as much as my right shoulder would let me do (it was frozen and tried to kill me this winter, I’m still on the mend), and it has been a joy to realise I have been steadily improving. When I finished this drawing I was colouring non stop for two hours, in the beginning I could only do 10-15 minutes before my shoulder ached. Woot!

Now I am finished with my first Cobra-induced drawing, I just had one warmup before I  went for it. After I started colouring I realised I didn’t have a background planned, and decided that I was OK with that. It’s my first proper drawing in a very long time, and I am actually quite happy with how it turned out. The next one will get a background – because there has to be something behind all those holes in the wall, right?

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Love Thyself as Thy Neighbour

In the first segment of the Quantum Dreaming course with Robert Moss on the Shift Network, he gave us a dream. In it, we would walk along the road of life and then come to a cliff. We’d need to let go of all our baggage, but were allowed to keep one item – a box of some sort. We’d then have to scale this cliff, but would be unable to, until we get a rope or something rope-like from the top and this lifts us up. When we get to the top, we will meet an ally, a helper, and we will open the box and find a beating heart. To help us go on the journey we have a 12-minute segment of drumming.

I had to go through this three times before I came to a conclusion, thankfully this is easy to do as the main journey is always added as a separate file in the replay. First time at the foot of the cliff I was weighed down, I even had a steel chocker with chains holding heavy things. There was an oversized backpack, chain and ball on both feet and multiple bags. How had I managed to walk with all of this? It was a relief to let it all go. My legs ached, but I had a box tucked under my arm and tried to scale the cliff. Useless, so I was relieved when the rope came. It just looked a bit like a snake’s tail, so I was slightly worried. With reason, because when I arrived at the top I found a humongous cobra was waiting for me. Its head was raised, hood expanded, and it was about 2.5-3 meters tall. I was struck dumb. I just gaped and thought “Uh-oh.” Finally I remembered the box and that we were supposed to look into it. Inside was indeed a beating heart, so I just held it open, waiting for Cobra to say something. S/he didn’t say anything, but suddenly attacked and swallowed the whole heart. Ouch. I was shocked and unable to say a thing, and the rest of the drumming I was standing there silently crying. Something that continued the rest of the day, I was feeling rather unhinged.

 

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The next day I did the journey again, this time I had a closer look at all the baggage, realising hardly anything was mine. Only 5% was my stuff, the rest was crap from my family and ancestors. The box I brought this time was a beautiful small chest looking like a mix of two jewellery boxes I have. This time when I reached the top, by way of the snake-tail-lift, I looked at Cobra, put the chest down, opened it and lifted the heart out. I held it close, whispering that I’d do my best to protect it – and then it slipped out of my hands. It went in through my chest, through clothing and all and I was dumbfounded. That was not what was supposed to happen – I just wanted to make sure it wasn’t eaten again. I looked at Cobra, who gently said, “We need that heart.” So I replied “It’s gone. I didn’t mean for this to happen, but it’s gone. I guess you’ll just have to take me instead,” and I stepped close. I sensed that Cobra was happy with me – and then my son arrived home from school, shouting “Mamma! I’m hooome!” I didn’t need to be drummed out of the trance then.

The third time I had a lot less baggage when I arrived at the cliff, for instance the choker was gone. I arrived at the top with the same little chest as yesterday, but when I arrived Cobra was shape shifting. Giant Cobra became a beautiful, strong, tall woman, who became Cobra who became the woman again, and she was moving in sync with the drumming. It was mesmerising. She told me to open the box, and lift out the heart, and to open up for Love. Feel the love. I looked at her, and said, “I don’t know how I can bear feeling more love. It’s overwhelming as it is!” To which she answered, “Not loving the world, Dearest. Loving yourself.” Oh. Talk about feeling humbled!

Long story short: Love yourself. At least as much you love your fellow beings. This has nothing to do with ego, it is pure love and appreciation. Should be simple enough, but sometimes you need to be scared witless by an overgrown cobra to hear the message.

I feel like finishing with quoting Marianne Williamson, from her book Return To Love (which I admit I have never read, but I love this quote):

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, “Who am I to be brilliant, gorgeous, talented, fabulous?” Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.

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Back again

Hopefully I will manage to stay here this time. It is rather fascinating how fast time flies. This spring it is six years since I first heard about Paolo Zamboni and CCSVI (chronic cerebro-spinal venous insufficiency). I had really hoped that these years had meant that my veins were now functioning perfectly and that my health was vastly improved. Alas, it is not. I have not given up hope, though. Removing the “dratted tooth” has left me with a small gap in the side of my upper mouth, and while I was a little self conscious about it to begin with, I am not so anymore. I have also discovered I am not the only one. The positive effect of removing it and the bacterias living in it is still with me, as my werewolf tendencies are gone. Full moon no longer has me howling in pain, so that’s all good.

Now, veins. They’re still there, thankfully. So is whatever it is that makes my left jugular vein feel rather stiff and painful several times daily. Is it muscular like quite a few docs say (but they do not explain why), or is it colonies of biofilm-building microbes in my veins that interrupt flow and cause reflux and ruptures? I don’t know, and unfortunately I have not been able to find a medically knowledgeable person with access to the right kind of equipment who also wants to find out. In my quest for CCSVI treatment in Norway, one hospital actually managed to say that they would not accept me as a patient, because they did not know what to do if they got a positive result. I.e, we don’t want to look because we don’t know what to do if we see what these papers suggest we will se. I have come as far as finding that yes, I do have venous reflux and that there are also some things flipping around in the flow. This looks like half a damaged valve, except there are no valves in the upper veins. So what is it? The medical establishment (read: MS neurologists) seem to only care about keeping the status quo, they certainly do not want to get anywhere close to theories that could possibly turn their world upside down. It obviously does not matter that it could improve the life quality of their patients.

This stuff is all rather depressing, and hitting one’s head against the wall is not enjoyable, even if it is just a figure of speech. So I prefer to focus on something else. Oh, and for those who wonder (I am not sure if I have said this elsewhere here): No, I do not believe MS is an autoimmune disease. I think the whole idea of autoimmunity is flawed, it is another example of human hubris. We see something we don’t understand, so it must be autoimmunity because it looks like that. How convenient. This stops the search for what it is that is going on underneath what we see, because it is all about autoimmunity and so we must focus on immunosuppressive drugs. Meh. No thoughts about the absolutely amazing creation our bodies are, and how unlikely it is that they would start attacking themselves. Back to where I wanted to go: focusing elsewhere. More specifically: What can I do? What are my options? One thing I do is something we all do, I dream. But unlike most, and unlike myself half a year ago, I dream with purpose and structure. Which means I am an active dreamer. I have done a 12-week course with Robert Moss on the Shift Network in Active Dreaming, and have now enrolled in a new course. A six month immersion into dreaming called Quantum Dreaming. Also on The Shift Network, with Robert Moss. We start on Thursday, 7th April. I am looking forward to this so, so much. And as I see dreamwork as something we all have the ability to do, I will share my experiences and hopefully inspire a few to join me in exploring dreamspace. It is incredible.

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Tooth health is serious business

Steadily declining health because of MS or something else? Right now it seems like it’s something else. Teeth! It’s all about teeth. 6. December I pulled one of my 6-year molars after it broke the previous week. I had been praying/meditating/whatever you’d like to call it to get some guidance regarding what to do to increase my health, and my tooth broke. And I totally knew that the tooth was going out, there was no way I was keeping it, I was never happy with the root canal this tooth had to begin with. I wanted it pulled back then, but my dentist convinced me it was better to do a root canal, and it’s been trouble ever since. It’s my firm belief that it has been the source of my constant decline healthwise. No matter what I’ve done with EFT and other energy modalities, diet and medication, I’ve just got worse.

Sleeping more and more, spending the full and new moon weeks in increasing amounts of pain, to the effect of living only every other week, and then on rather low volume. I’ve managed to get the kids out of bed and make breakfast and packed lunch, and then dinner – but even that has been hard to manage at times. The last year I’ve hardly managed to do anything creative – the picture of the day project I started 2011 with, petered out in April. It’s been rather bleh.

Then, six weeks ago, I pulled that dratted tooth and was rather knocked out the next week or so because of pain, the worst pain actually being where the I’d got the anaesthetia, not the extraction site. I was rather hopeful the removal of this tooth would mean general improvements in health, because the full moon came and went without half my face feeling like it was on fire. Then solstice and new moon happened, still no facial pain. I did, however, get a rather intense cold and was knocked out flat. Wanted to cancel Christmas, and was rather grumpy about being so ill. Why, now that my vit. D levels are upped, did I have to get this «traditional» Christmas malady this year? Now I wonder if it was a kind of cleansing process I went through. Maybe it wasn’t a cold, after all? Thinking about it, I did have way more pain than I usually get from a cold, and I didn’t go through all the stages of a common cold, I barely even coughed. And even more, the minute I felt that this «cold» was gone from the system, my energy got a serious boost. Not just back to pre-cold levels, it was a major boost, so just to celebrate I started clutter cleaning in the basement. I’m still not done there (I’m no superhuman – I still suffer the effect of not having been able to move about and exercise like I’d like to, so I get worn out way faster than I’d like), but I’ve made some serious headway. And I’m scrubbing and cleaning all over the place, a behaviour that’s so un-like the me of previous years. Because now I don’t look at it and fall asleep, now I look at it and do it. It’s so totally amazing I have trouble putting word to just how amazing it is.

A week ago I set a goal for the house: I wanted to empty the living room extension (which has been sort of my creative work room, and which has been a mess ever since we moved here, 5 1/2 years ago) and paint the walls and ceiling before my birthday. Which means I have one and a half weeks to do so. Should be doable, especially with this new level of energy I am experiencing. In fact, hubby and I emptied the room on Sunday, I sealed all the knots in the panelling and filled holes on Monday, sanded and washed the walls on Tuesday – and then we got rid of my two old paper cabinets as well (heavy steel drawers, ugly as anything, but the band was happy to get them, and will use them to sort sheet music. Win-win!). I’m keeping my paper, of course. Hopefully I’ll get right to using it once I’m done with the room. Right now I’m having a break, but I’ve primed two thirds of the room, so I’ll be done with that today.

This change in me is so awesome, it’s totally amazing. Finally I get to experience the effects of all the EFT and stuff that I’ve been doing, because now I have the energy I need to see those effects. I’ve got rid of the main energy drain, the signal disturbance that this infection was. I’m more clear headed, I’ve got more energy, I feel like doing stuff – and I do it, and I don’t have that dull ache in my cheek. Which baffled my dentist a bit, as the x-rays showed that everything was good. Just proves you should trust your gut feeling, your intuition. X-rays are good for a lot of stuff, but don’t use them to ignore symptoms and your own health hunches.

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To the point. There are open minds out there, thankfully.

Dr. J. Joseph Hewett, MD, is one of them.  I just wonder why there are not more?  Why is this so hard for most of the medical establishment?  Why does it seem that obtaining an MD or PhD demands that you close your mind?  Or have I just been seriously unlucky with the ones I’ve met?  This was filmed while he visited Canada to talk about CCSVI, Chronic Cerebro-Spinal Venous Insufficiency

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An update! I need to do this more often…

Now, where was I? I have lost count of all the times I have updated in my mind, unfortunately it didn’t materialise in the physical. Until now. I do hope and pray that I’ll manage to change this habit, that I’ll manage to be ok with shorter updates and not have extensively researched longer updates that I never even write because I lose myself in the gathering of data. Small updates with some links or some thoughts that I can expand on later on. Sounds good, doesn’t it?

So, what have I been up to, since my last post? Well, I’ve been at the hospital for a sonography of the blood vessels of the neck. Unfortunately all papers about Zamboni’s reseach seem to have vanished from my journal and the sonographer insisted the veins held no interest at all. Which I disagreed with, of course. I mentioned that I have already been found to have a venous reflux, which is most peculiar, and which I have been referred to the hospital for earlier, with the notion that this doesn’t seem to be right and should be checked further. Eventually he did check my veins, after repeatedly saying «but they’re fine, you’ll see. Veins are never a problem,» (but only the left internal jugular, he didn’t even get a spark of curiosity and look elsewhere), and did find the reflux, and seemed most surprised. And said I needed a CT or MRI with contrast to see what caused this. Yes, please. This is exactly what I asked the neurologist for in November. A few days later hubby called to check on the report (as I have an appointment with my GP on Friday, and want to make sure she has the report by then), ad then he wasn’t so sure he’d found any reflux at all. What? Someone must have «talked» to him, in my opinion. Why does it have to be so hard for the medical community to embrace new ideas? Why does it seem that obtaining a doctorate also means obtaining a closed mind? It’s ok to be sceptic, I don’t expect them to say «Heureka!» at every new idea that comes along, but what about saying «What if? If this is correct, what will it mean for my patients and how can I test the theory?» Instead they behave like petulant kids and refuse to even look into the data behind the new theory. It is most frustrating, especially when you sit as a pwMS (person with multiple sclerosis) and know that you have venous reflux and would like to have it checked – and the ones with the ability to check, refuse to do so because they don’t believe it has anything to say for your health. All parts of the circulatory system has to work, veins as well as arteries, and a good portion of the 17-20,000 people who’ve had angioplasties on theis veins so far, will be able to testify to that. I recently saw the update of one of my Facebook MS mates, he’s been in Frankfurt and had his stenosed veins angioplastied, and now he’s riding a bike again. For the first time in eight years. If that’s not a strong indication there’s something to this, I don’t know what it is. Unfortunately those who really need to see it probably won’t.

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Living a better life with MS

That was the title of my chapter in an anthology named Soul Whispers.  How can that be achieved?  And I guess the short answer is:  Be True To Yourself.  As simple as that.  If we all knew how to be true to ourselves, if we knew how to be congruent beings, we would have a much better life.  In my opinion, at least.

Religion was never a part of my family mythology, I grew up knowing I had to find the answers myself (maybe not as clearly formulated as that, but I had no sense of a heavenly father looking out for me).  When I was six, my best friend and I sat in the stairs, she claiming that God lived, I claiming that God was dead, or so my mum says.  I don’t remember anything about that, but I think it sums it up.  There was no God looking out for me, so God had to be dead.  That’s logical, isn’t it?  🙂  My more recent mystical experiences has brought me to a different point of view, but I still don’t subscribe to the “Heavenly Father” notion.  To begin with, why does it have to be a father?  And why does it have to be anthropomorphised?

I’ll talk more about my spirituality later on, I won’t be able not to, but now I want to get back on track regarding the title – how to live a better life with MS.  Spirituality is definitely a part of it for me, but everybody has to find that answer for her- or himself.  Nobody can tell you what to believe, you have to feel it on your own.  That’s my opinion, at least.  I have a feeling of connectedness to all that is life that I find quite wonderful.  It can be quite overwhelming at times too, but would I ever want to be without?  No way.

Learning to listen to your body is also important – what does it want?  What does your body want, not your feelings, but your body?  There’s a difference there.  I’m quite certain it doesn’t want a chocolate, or a cigarette or a drink.  Unless that drink is water.  Our feelings and emotions might want that and more, but not our bodies.  Our bodies wants to be sustained and nurtured, but how does one know what it wants, truly?  I’ve been trying to find out for a long time (several years), and at the moment I find energy testing to be the answer.  Using a pendulum or a muscle test to find what my body wants works for me.  I am fully aware that it has quite a few people rolling their eyes, but really – it works.  I guess the best testament to that is my physical transformation over the last few months.  I thought I had healthy eating habits, but I was also aware I had too much of a bread addiction.  Even though that bread was home-made wholegrain sourdough bread, it was no good for me.  I knew I automatically went to have a slice of bread when my energy was down, that I tried eating to boost my system, but not only didn’t it work, it also made me gain weight, and I didn’t manage to break the habit.  Until I tested and lost all power when holding a slice of bread.  I really wish I didn’t react that way, because I love the taste of bread, but I’m not mourning the loss of (so far) 20 kg, or the fact that for the first time in my life I have a low CRP count.

Then there’s exercise, and that’s both a standard kind of physical exercise, and energy exercise.  Qi Gong, for instance.  Of course, growing up like we do, being completely disconnected from our bodies and not learning to release emotions properly, we also end up with loads of blockages in our bodies.  I don’t know how many times I’ve tried to get into a good Qi Gong habit, but each time I’m stopped by backache.  Hopefully I’ll manage this time, I’ve started working with Spring Forest Qigong – and so far things seem good.  Other kinds of exercise is no good for me at the moment, because I get more MS symptoms from it.  Which possibly has something to do with ccsvi.  An endocrinologist checked my jugular veins and found one of them to have a malfunctioning valve and reflux.  Nice and fast blood flow towards the brain of venous blood is not a good thing.  Not that I’ve found someone who even want to consider that this might be a problem.  So instead of trying to get the hospital to cooperate, an exercise that is highly discouraging, I have started doing an EDTA treatment, as it is said to cleanse the bloodways.  I started Monday 21. February, so it’s only been a few days, and I can’t really tell if it’s had an effect yet, but after six weeks there should hopefully be some change.

There’s more to say about EDTA, and about EFT and Psych-K, about diet, various treatments, and mindfullness in general, but I think I’ll go for shorter posts and hopefully regular updates instead of humongous posts now and then.  And hopefully the bugs I had with getting this blogging thing to work have now been eradicated and it will be smooth sailing from here on.

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