Posts Tagged ‘Bartonella’

“The purpose of government is to enable the people of a nation to live in safety and happiness. Government exists for the interests of the governed, not for the governors.”
Thomas Jefferson

What a lot of Hokum for We The People.


I had originally decided to do a short blog and call it ‘The Spirit is willing but the flesh is Weak”. Yet the more I thought about it the more I realised it simply was a hoax. Most importantly I was simply fooling myself. It sounds so pathetic to continually say, “It’s been a bad week” or “I’ve had a rough couple of days” or any number of other platitudes.

That’s not to say that they aren’t true, it’s just that I’m tired of using the same statements as if I trot out one after the other when things are… challenging. I’m not sure quite where I am on this sliding spectrum which I use to gauge how well I’m travelling. Truthfully, I’m feeling more than a little sick and tired with being sick and tired and not really knowing if I’m on the right track.

For so long I dragged myself to the doctors and presented the same old symptoms, tiredness, aches in joints and muscles, my motivation slowly drained away as it became more and more difficult to do things. I’m a perfectionist. I’m also a control freak. I like things to be neat and tidy. I can find nothing wrong with being able to tell anyone exactly where to go to find anything they need in my home. At least I could do that a couple of years ago.

There are my detractors who accused me of OCD, but heck, at least I didn’t need to upend my home to locate a letter I need. I revel in my individuality and I don’t expect anyone else to follow suit – each to his own.

#What a lot of Hokum

image from frommylivingroom.blogspot.com                                      Everything in it’s pace and a place for everything.

Then I was told about Lyme disease. It seemed to fit so many of the anomalies in the symptoms I had. The medication protocols are – unpleasant. If Fibromyalgia causes Brain fog then Lyme – its co-infections and the medication to ‘treat’ it definitely increases it exponentially. But I’m no quitter. I’ve gone through the protocols, dragged myself in ever decreasing circles of confusion and despair trying to determine if I’m simply grasping at straws. And I’m still not finished.

I’ve blogged about it because I’ve struggled to find support groups or people who are willing to share information. How odd. Here is a disease the AMA refuse to accept is in Australia, penalise doctors who treat it and we cannot find anyone to give us recommendations to people who are helping the ‘sufferers’. Those who find these people, usually friends, or friends or friends, keep that information to themselves. Why? Is getting well to be a hoarded treasure? Bygone days of the privileged living and the disadvantaged fading away unnoticed.

#What a lot of Hokum

image from alternews.com –      Where did the floor come from?

I’m not simply tired, I’m exhausted. My arms scream at me in pain for typing, but this is my only outside contact. It’s lonely not being able to see or speak with people. One more day of crawling up the hallway is making me shake uncontrollably. Is this Lyme disease, Bartonella or Babesiosis or some other confounded co-infection I’ve yet to be advised of; or is it Fibromyalgia, ME/CFS or one of its familiars?

I was feeling blah this morning. I had several appointments and I’d had a rough night. In fact I crawled up to the bathroom and cried for about an hour. I’m not giving in, but where the hell do I go?  How do I persuade my GP to look at my symptoms differently – not simply hand out stronger pain meds that leave me FOGGY!!!

To be able to think is such a gift. To know you are making sense and perhaps helping someone who needs to read this… that is my impetus for continuing. I have no answers, just a zillion questions. I want answers because I feel the medical establishment owe us that much – and then decent treatment. I have a right to a quality of life that is good enough to let me do what I’d like without crippling me. There is no need for it. If the damned doctors and insurance companies had done their due diligence when I had my accident, my simple accident, I wouldn’t be in this predicament now. I truly believe so. I wish I could sue the bejaysus out of them.

For the first time today, I ‘listened’ to someone who had always presented a positive push for the treatments they were given, the illness that accompanied them and was able to do so many physical activities I dream of doing’. Today I listened to them bemoaning their shuffling gait to reach the beach, crying because of the brain fog, the inability to raise your head from wherever it lays, and not be able to DO anything.  I admire this person, but here they are, for the first time in my space.

I want to offer advice but I am unable since no-one shared advice with me, I have none to offer except to say, I understand, I am there still, drowning in this misery but determined not to let it win.

#What a lot of Hokum

image from http://www.bannerhealth.com                                   I’m right here, You are not Alone!

I am going to search for these mysterious support forums and try to find out if these diseases have the same symptoms or not and what works for them. I have a few answers from dear people today. Yoga terrifies me because the pain is well established but I’ll try. I may not have  an answer, but by heavens, I will control my environment as much as I can so I can enjoy, to the fullest extent, the life I have been handed. I will also pass on any information I uncover – as a reference only, to be talked over with your doctors so that perhaps, in the fullness of time, we can beat these blasted torturous diseases. Such is my hope. Such is my prayer for all of us.

#What a lot of Hokum

image from childrensbookshop.circlesoft.net         Here come the answers!

As human beings, as Spirits having a human existence we search for answers. This is a prime directive so that we can learn. There is “a strange new world” out there, “new life and new civilisations” and, even more important, “The Truth is Out There”.

#What a lot of Hokum

image from aliens.wikia.com

What more could we ask for?  Who was right, Spock or Kirk?  Does “The good of the many outweigh the good of the few” or Does “The good of the one outweigh the good of the many?

We all deserve a better future.

Blessings, Susan x

© Susan Jamieson 2014

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We The People

Imperfectly Perfect

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It’s beautiful isn’t it? Looking through the pictures I was immediately captured by the different hues of the sunset. It brought to mind the harshness of the country and its changeable nature.  There is so much of Australia I would love to see, but I have to acknowledge that I would have to choose which time of year to go to some of the places. I so admire the people who live out west, the farmers and primary producers without whom we could not survive. I know I could not do it. I’m realistic if nothing else.

“Summer Love” is a song made famous by Sherbert in 1975. It had catchy lyrics which revolved around how wonderful it was to be in love in the summer, the summer being one of the main ingredients. I often wonder if I felt that way when I was younger…. and oh, I feel so Old right now.

I tell my family and friends that between September and May they have to be aware of one very important fact – treat with caution because a “Homicidal Maniac” could be lurking in the wings if the mercury goes over 30 degrees. She is one of my sub personalities, and is a tormented soul. You see, she was meant for a cooler clime and the heat makes her feel simply awful.

Imagine, if you will, that there is a furnace in the region of your solar plexus. As the mercury rises this furnace is stoked by a demented harridan until it’s a white-hot roaring blaze. The heat rises up through the heart making the blood boil. It travels through the throat, making you feel as though you are trying to breathe super heated gas. It continues to rise up into the brow, beating like a bass drum and finally all the way to the crown, turning the brain to a molten jelly. Not a pretty picture.

image from smileys-4-eva.deviantart.com

It’s too easy to say I’m feeling a tad sorry for myself and perhaps I am. I don’t believe I’m going to suddenly spontaneously burst into flames, (Spontaneous Combustion) although there are times it feels that way. Perhaps I spent too much time watching the X Files.  This was before I had begun my treatment for Lyme disease and its friendly co infection of Bartonella. My body is reacting to these drugs like it would to foreign invaders. It is trying to burn the blighters to ash, only I’m caught in the middle. At the moment I think if I sat in a cold bath I could boil the water after a while. I kid you not!

Everywhere I go I see the summer clothes, which I can’t wear because I’m so super sensitive I burn like on overcooked lobster.   Then there are the over cheerful weather reporters, and their cohorts, who delight in saying “It’s going to be a beautiful sunny day tomorrow. We’re expecting the temperature to be in the mid thirties”.  Oh No, no, no, no. I feel a deep primal rage bubbling to the surface (along with my inner furnace) and a murderous rage simmers behind my eyes. If I had laser sight I might just incinerate the weather reporters who are sitting in their nice frigid air-conditioned news room.

Of course, I know that the majority of this is caused by being ill and the drugs I’m taking, but it really doesn’t help very much.  I’ve had a rough couple of days. There have been things I had to do because I’ve put them off in the hope I would feel better – soon! Work on the computer, accounting, columns of figures and searching for information. It doesn’t help that I know I should have been doing this in small increments to make it easier. I didn’t but now it’s finished yet I still have to pay the Piper.

I lost myself for a while yesterday with my whales. Nearly got caught again today. Gazing out the window, having a break, I saw a beautiful sight – a whale doing a full breach. Completely forgot the camera, but then I wouldn’t have been able to focus it in time. It was wonderful though. So easy to get lost watching them pass by.

Having fun in the sun

Having fun in the sun

So, after messing up the publication of my poem yesterday, I apologise for being a tad miserable today. Too many figures, blurry eyes and headache, aching joints and my tummy doesn’t like me very much so I can’t sleep. I’ve borrowed my husbands magnifying glasses so I can see to type but it’s slow with all the mistakes. Time for dark shades again.

I’m heading back to my meditation to help me pull through. Morning always comes, doesn’t it, and this will not beat me. (I am woman hear me roar.) Later today I’m back on schedule for the next part of my search for answers – after my blood test that is! Pincushion time is still here. Ha!

Wishing everyone the days and nights you love, the love you want and the peace you deserve.  That’s what I’m focusing my meditation on for all of us.

Blessings. Susan x

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image from nopassportrequiredblog.wordpress.com

For some time now I have been writing my posts during the long hours of the night. That is, interspersed with some very unpleasant interruptions caused by medication. This, of course, is not entirely true. If the medication doesn’t make me ill then the bugs it kills makes me ill. Either way I’m feeling awful and try to keep my sanity, or what is left of it, by doing something I enjoy, and hopefully, that you enjoy reading.

It has always seemed strange to me that pills are made to look so nice, with pretty shapes and colours and the prettier they are the more foul they taste.  Plus, they always seem to want to go down sideways and get stuck. Always the ones with sharp corners on them.  So here I am with a throat full of noxious tasting pills, scraping furrows as they go down and dissolving along the way because it’s taking so long. Trying to be well is making me sick!

I thought I was well until I had a car accident. Two pinched nerves, several protruding discs and a completely stuffed rotator cuff and it seemed to be the signal for my body to become a traitor to the cause. The cause being good health. I barely took a pill of any kind in those days, just an occasional headache tablet. I was a gym junkie and fit. I loved it!

Now my day revolves around which batch of pills comes next. The problem it has caused is that by the time I’ve finished forcing down what feels like truckloads of pills to kill off the bugs, (Lyme disease and Bartonella to name just two), plus all the “good” stuff to help overcome what the ‘get me well’ pills are doing to my system, and the immune boosters, and so on, and on, and on, all day long into my now tenderised tummy, I feel as ‘sick as a dog’ (poor damn dog!).  To make it worse I know I have to repeat this all over again tomorrow, and the next day. Added to which I cannot take anything to stop, ease or lessen in any way the effects of the ‘get me well’  pills, or the cocktail of other pills I’ve ingested.

So I feel damned awful all night and spend far too much time either in a foetal position feeling sorry for myself or running to the bathroom. Either way I’m wishing hours of my life away and so I try to concentrate on something of interest to myself and possibly others.  It’s a painstaking process as the interruptions prolong the creative urge and resultant blogs.

Tonight I’m feeling too banged up to even think, so this is it. I’m letting people know I’ll be missing for a day or two until I can get some rest.  Hopefully, I can get some of the still functioning brain cells to work and get back to ‘normal’ programming soon. That’s the plan, as far as plans go.

DSCN2750 (Copy)

Sunrise from my back door. Like the sun rising I will return brighter (hopefully) than ever.

Have a wonderful weekend.

Blessings  Susan x

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Midnight Margaritas from “Practical Magic”.                                                                          Image courtesy of  heathwitch-cottage,blogspot.com

April 21st

No need for second guessing,  I have Lyme dis-ease, along with 27 other little friends, all confirmed by the wonders of medical technology.  Now the fun begins but not with lime and coconuts, although a margarita might be good in a while.  Whilst I cannot say I’m surprised to be told I have Lyme, I was astonished to find the pesky blighter doesn’t, or rarely does, travel alone. What has been more difficult to accept is the refusal of the Government or the august members of our medical fraternity to accept or acknowledge that Lyme dis-ease exists in Australia.

There is this strange dance which has to be followed if you are ‘fortunate’ to find a doctor whose Hippocratic oath is solid enough to permit him/her to test for this dis-ease, if it is suspected.  That is, of course, if you are willing to pay for the testing which cannot be done in Australia since the dis-ease does not exist here! No, tests have to be sent overseas to be done and if the result is positive you either cannot get the ‘protocol’ followed in the US or UK where Lyme dis-ease is admitted to be, or if you find someone who can get it for you, it costs a small fortune.

Tick carrying the Borrelia burgdoferi disease Image courtesy of webmd.com

So, armed with my antibiotics, herbs, more requests for tests, CT and MRI scans, the slow waltz begins.  Nothing comes without cost and the medication to combat this has its own unpleasant surprises. I am nothing if not thorough and the list of likely side effects is enough to make even the strong quail.  Which is another reason why it has taken me so long to get back to my writing, it didn’t take long for some of the unpleasant side effects to kick in.

A daily dose of supplements, just add to antibiotics with water! Image from allnaturalme.com

I’m finding a really amusing side effect which I am sure has nothing to do with medication or herbs, perhaps the Lyme, who knows, but I find I’m substituting an ordinary phrase for a musical phrase – and I’m not musical!  Hence the title. I was thinking about my approach to this post and the song from Practical Magic wouldn’t go away. The song was sung by Harry Nilsson and perhaps there is a warped sense of humour at play…..

“She put the lime in the coconut, she drank them both up
She put the lime in the coconut, she called the doctor, woke him up,
And said, “Doctor, ain’t there nothin’ I can take,
I say, Doctor, to relieve this belly ache?
I say, Doctor, ain’t there nothin’ I can take,
I say, Doctor, to relieve this belly ache?” …………….. as I said, warped sense of humour!

DSCN2409 (Copy)

This is not a belly ache! As you might guess, light sensitivity, ear ache and tinnitus, stiff neck and shoulder and that was before the pills had fully hit my tummy.  Teeth tightly clamped – just in case.

It’s not all doom and gloom and bad news. I was blessed to find a doctor who knows what he’s doing and not afraid to correctly diagnose. He’s also approachable and will answer my zillion plus questions with absolute patience. He even lets me have a star when I get the diagnosis for something related right. I guess I’m an involved patient. The last visit to see him we (Ray drove me of course, where would I be without my wonderful husband) spent over an hour and a half going over everything with him. That is some commitment to your patient!

I am eternally grateful to Nicole who pointed me towards this doctor. I’m relieved to finally have a diagnosis which explains all the anomalies I’ve been chasing down for a decade –

“Through dangers untold and hardships unnumbered I have fought my way here to the castle beyond the Goblin City……You have no power over me!”  Jim Henson

David Bowie as the Goblin King in The Labyrinth image from http://www.kianleong.com

– which is how I feel about my ‘fight’ to find a diagnosis and I’m going to beat the beastie in the end.

I’m also endlessly grateful that I met and married the love of my life. He is by my side, holding my hand when I need it, driving me to appointments, giving me Reiki to ease the pain, and when I can handle it – cups of tea, cooking dinner and so much more. He is simply the rock I can lean on whenever and wherever we are. Without his support I am unsure how I would be handling this. I have truly been blessed to find such unconditional love.

Midnight Margaritas image from http://www.tumblr.com

….”she put the lime in the coconut and drank them all up”…………………whoooo whoooo!

“You have NO power over me!”   Let’s get them beasties!!!!

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