Winter sky; hopeful light

Winter always held a special magic for me, even before we were introduced to snow in 1997. There is just something about the crispness, the puffs of breath, the stomping of feet, and the appreciation of coming inside to warm up. Perhaps I'm older, but the winter light, the clouds, the sun traveling low on the horizon during the cold months and the light holding strange shadows really fascinate me here in Ontario. Today when I left the office, this was the wonderful sky that welcomed me outside:

Pink diffused light

I can't get enough of how the slightest bit of weak sunlight turns a mediocre scene into a delight. It takes my breath away with a dramatic sky, with interesting clouds being lit from the side and diffused light softly touching buildings and corners. The camera is usually nearby, not to take a prize-winning picture, but to capture a ray of hope when it is least expected, often while I'm pre-occupied with thoughts of traffic, chores, shopping or work. What a beautiful world we live in!

Skywatch Friday

Donkey Sanctuary

It was raining most of today, but we wanted to go get our Christmas tree. We stopped at the Donkey Sanctuary and got some lovin' in for the animals there. Since it was so wet, we didn't get to be very close to the donkeys, but did get some ears to rub, faces to scratch, velvety noses to pet and pictures of different critters.

This quote with the two donkeys in the background touched me especially.
A few more pictures are HERE. 

Afterwards we went to pick a Christmas tree from a nearby farm. Very weird with not a speck of snow around, though! We chose a very fat little spruce. Jaco, wearing only a T-shirt with a sweater over, was pulling the tree sled and was freezing cold as soon as we were among the growing trees to pick our own! We always try to get a fat tree, and this one was no different. It fills the corner in the house and the rabbit was sniffing the air. At least there's the smell of Christmas now, even without snow!

On the health front. The Lyme is being a pain again. Been having sore neck, various pains, headache, fever and all those familiar old friends again. But, if I allow those things to tie me down, I'll never get to go out, or spend time with the family, or make memories. So, pay a little for time out, rather than be tied to home and bed. Fair exchange, no?

Dr. Murakami on Lyme

Dr. Ernie Murakami posted on my Facebook wall: 

"I will be co-hosting the radio show every Sunday evening with Sue Vogan from North Carolina starting on Dec 4th, 2011 (07:00-09:00 PM, Eastern Standard Time)
I can dialogue with you then and any one interested in Lyme disease."

This is the information about the show:
Sue Vogan's Radio Show:
IN SHORT ORDER, every Sunday, 7-9 PM EST
http://www.blogtalkradio.com/in-short-order

He posted on his own wall: 

"The Medical Profession remains divided despite the Federal Governments, Provincial governments and other Associations making statements that Lyme disease is a clinical diagnosis and a major epidemic is now eminent.

"... But it is only a matter of time when Education becomes the major issue in converting the non believers to believers.

"The evidence is mounting rapidly with the N.S. recent studies releasing the information that the tick population with Lyme spirochetes is rising.
The Manitoba Health Department in 2009 reported 14% of the ticks taken from patients were infected with Borelia burgdorferi and 5% with Anaplasma phagocytophelia.
Minnesota Health department has reported an average of 1000 serologically positive cases annually for the past 6 years.

"Along with these findings there are proportionate increases in Ehrlichiosis and Babesiosis which the medical schools are not teaching and primary care physicians are not aware of any co-infections.

"Patients urgently need financial assistance to seek medical care in other counties now, why do families have to sell their homes, suffer in silence with a misdiagnosis, be ridiculed by physicians and eventually some commit suicide.(Two personal patients)

"I plead that our medical profession will soon sit at one table and discuss all the knowledge that is acquired by evidence based medicine."

The Invisible Disability of Lyme will be very public!

Lyme Disease. Super Sized.

The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron in New York City.

 

Lyme disease has been an invisible disability ... The International Lyme and Associated Disease Society (ILADS) launched a public awareness campaign by making this invisible disability more visible in Time Square during the Holiday Season. Greater public awareness may help to reduce the catastrophic disease burden caused by Lyme and associated diseases.

ILADS is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron.

The Jumbo Tron is anything but invisible. The giant video screen is 26 feet tall and 20 feet across and is strategically positioned at 42nd Street between 7th and 8th Avenues in New York City. The spot will run every 20 minutes for 3 months. It is estimated that 1.6 million people pass through Times Square each day. The spot will remain in place during the Thanksgiving Day Parade and New Year’s Eve celebration for bonus exposure.

The all-type animation focuses on the statistical fact that Lyme disease is growing faster than AIDS.

"Lyme disease is an invisible epidemic," said Barbara Buchman, Executive Director for the non-profit International Lyme and Associated Diseases Society (ILADS). "Tick-borne illnesses spread quickly and the diagnosis, which is largely based on symptoms, can be elusive unless a physician is Lyme-literate."

(Information shared from Putting Lyme Behind You and ILADS Media Center)

Another lobby for Lyme!

Been swapping emails with my friend and birthday buddy, Joe Gray today. As a farmer and as a friend, the drama around my struggle with Lyme disease has been something he has been talking about and informing others. Before sharing his news, here is a picture of Joe and I earlier this year, on our birthday - since we each celebrated a significant number this year!

Joe and I at the Fall Fair.

Joe wrote: "I attended the Ontario Federation of Agriculture's annual convention on Monday. There was a resolution brought forward asking the OFA to lobby the government to acknowledge Lyme disease in Canada. I explained the difficulties that you have gone through and still are. The resolution was accepted."

The exact wording of the OFA's resolution: "Therefore be it resolved that the OFA lobby that the Ontario government encourage the medical community to recognize this is a serious disease, adopt more advanced technologies to improve diagnosis and treatment of acute and chronic Lyme disease as well as improving public and physician education about the disease, thereby eliminating doctor reprimands for actively treating Lyme disease."

Isn't that great news?
Thank you so much, Joe, and everyone else who gets a word in about Lyme, who lets others know about how to do the simple checks and to be aware, not paranoid!

OFA website

Winter is coming!

What a glorious, shining world we looked out on early in the morning! Everything was covered with a fine layer of ice, and as the day warmed up, the sparkling and diamond drops were everywhere. This is a Blackberry shot of our bbq (braai in Afrikaans) - Jaco forgot to put the cover back on after they "tanned some steaks" on Saturday.

 Yes, I know those who  were out late last night did not appreciate finding their cars totally iced over and their ice scrapers still locked in the trunk, which couldn't be opened because of the ice ... but it is very pretty! Driving the work the street signs had long icicles hanging down, making the drive incredibly interesting. Mundane things decorated by ice.

Ok, Bat, I know you say snow is eeeeeevil .... but you'll have to come here to beat me up first!

First needle & elevated lead levels

Well, this one was a success!

I asked Arno to watch me do the first injection, just to be sure not to mess it up. At least I didn't tattoo myself with the red stuff! This will have to be done three times a week for the next 6 months to a year, and hopefully will help recover some of the destroyed brain pathways.  It burns to go in, though, but only for a second. No big deal.

We sorted out the pills for the next week. About 45 pills a day, without the liquid supplements and probiotics. Right now I'm also on Malarone, which is a malaria tablet; 4 a day for the next three days, then 2 a day for the next 3 or 6 months. A friend had severe hallucinations on malaria tabs and told me last night to watch it!

Anyway, the new diagnosis. Seems I have elevated lead levels. That was one of the tests the doctor wanted to do and the one I had to Fedex, as mentioned in the blog post under the pic of the new pills. Last night I received this email from the Lyme specialist:

 
"Your lead is elevated at 25. I am going to attach how I treat it, but you can also see a naturopath in Ontario for IV chelation.
It may not resolve rapidly, but need about 3 rounds of the detoxamin. The IV treatments also can take a while to clear it all as it is stored deep in tissue, in bone."

Then from her email, the cost per round (I won't copy and paste the whole thing only the bottom line):

$270.00 for 7.5 weeks plus $30.00 packaging and mailing =$ 300.00 US

Just picked up new meds

I've just been to the pharmacy to get the prescriptions for the next month or so. It was literally a shopping bag full! Some of the prescriptions can no longer be found in Ontario, and we had to pay for two months' worth while we were in the States. The syringes are for injections I'll have to do myself, three times a week, for the next 6 to 12 months.

All the extra tests that were ordered, have now been done. The heavy metal testing has to be done in the States and the specimens were sent off by Fedex last Monday. This afternoon I took the requisition to the blood lab and had that work done.

Look at this lot! Maybe I can open my own store on the street corner! The last few years, since I became infected in 2007, was a learning curve of note. Lots of new knowledge gathered, although I could have done without that diploma.

Deep, sore bruises

Bruises keep appearing on my legs. They hurt!
This is probably a funny picture, taken with the cell phone of my right thigh. There are more bruises on the back of both knees, on the inside and outside of both thighs. There has been no trauma; no wild parties, no dancing on tables or rolling down stairs! When the LLMD saw my heavily bruised legs on Nov. 7, she admitted to thinking they were caused by some force from outside (use your imagination!), but quickly changed her mind when she saw how and where they were placed.

She thinks there might be a Vit. K deficiency or something. I have a request for a specific blood test but am only seeing my family doctor on the 21st of Nov. He has to re-write the New York state prescriptions in order for me to fill them here in Ontario.

So, just another milepost on the weird path through Lymeville to Health!

Roasted Red Pepper Soup

Trying out new things all the time to fit in with the restricted diet, is an ongoing adventure. Depending on my mood and energy, I sometimes make a few items to use during the week, or to freeze for later use when the energy is low.

Last night I roasted a butternut squash, a large red onion, a green apple, firm red peppers, and a few kale leaves with sea salt to crunch as chips. When cooled down, the squash was scooped out and mixed with onion and apple as well as low sodium (preferably home-made) stock to create a creamy soup. A splash of apple cider vinegar (with the mother) added some tang.

The peppers were left to cool a bit, then the skins removed, some more onion and garlic added as well as stock. Use a wand or immersion blender to smooth. Today, a few fresh kale leaves were added before heating up the soup - look at the pretty colours!

 When the kale had wilted and the soup was warm, it needed some creaminess ... and I've found that milk doesn't always play nice with me any more. So a dollop of Greek yogurt did the trick!

I thought it looked VERY pretty and healthy, but the guys in the office had all sorts of things to say about a purely vegetable meal. They'd rather have bacon or bratwurst or hamburgers. No matter what they think, I thoroughly enjoyed this meal!

To the States for treatment again

Last Monday, we had to take the 7 hour trek to the USA again, in order to be seen by a Lyme Literate doctor (LLMD). The doctor who was treating me in Ontario has been forced out of practice for treating "a disease which doesn't exist in Canada". (spit)

I'm so grateful that dr. Maureen McS accepted me as a patient! I first saw her in May 2011, when she also diagnosed me with the terrible twins, Babs and Bart (Babesia and Bartonella). For three months we attacked Bart, and then in August started targeting Babs. 

Dr. McS with me at the Lyme Conference in Toronto.

The hotel where we stayed was quite nice, but food was an issue. Really hard for me to find much, especially breakfast. When you tell a restaurant you need a meal to be gluten free, sugar free, casein free (no cheese), not allowed salad dressings or mayonnaise, and no beverages other than water with lemon juice, they look at you rather funny!

Spent about 90 mins with the doctor. She is generally pleased with my progress, but doesn't like the ugly, deep hurting bruises on especially my legs. More tests to be done.

I would also have to start injecting myself with Vit B shots, to try and get the brain functions back to normal.

She's changing some of my meds, keeping me on some and adding more to the cocktail. This will be hard on me, she said, for the next three months. Now I have to wait to see my GP in Ontario to see which prescriptions he'll rewrite and which ones we must order ourselves.

Some of the pills our pharmacy can't find in Canada any more, so we bought and paid for one kind for two months while in the USA.

That's when I had another diabetic crash. Too long without food, and poor Arno had to drag me to a food court and got some steamed veg and wokked pork with a cup of black coffee. I didn't get as bad as the previous crash, because he got such a fright the previous time, poor guy, and reacted rather quickly this time.

The doctor said I have to eat every three hours to avoid these crashes, and always include protein, which is what I've been trying to do all along. If you see a  woman carrying a little bright pink lunch bag everywhere, say hi! Chances are it might be me ...

Have to continue with the very restricted diet, but might be able to add cider vinegar with 'the mother culture' included. Oh and I can have goat's milk cheese and feta.

Must try to work in more walking, cut down working hours (currently around 30 - 40 per week), and look at another 18 months of treatment to beat the Lyme monster.

Meeting the Lyme warriors in Toronto

What a rush this weekend was! Being able to see, hear, meet, talk to and just observe so many people who have become familiar to me through research about this disease we are fighting, either as patients or as health care givers or family members, gave me energy to fly! Of course, as always, then the crash happens and I woke up this morning with infection in both eyes. And fatigue dragging my feet. But it was so worth it! I'm busy uploading some of the pictures taken this weekend. Below is a collage of some of the pictures that meant so much. I can't pick one that meant more than another, but as a Lymie who have seen the suffering of Mandy Hughes on the film, "Under our Skin", it was particularly uplifting to see her at the conference, and to talk briefly with her and with her mother.

 MORE PICTURES
Too many to name, but the pictures are being uploaded and captioned to Picasaweb. You can see them either from HERE  .... OR if you have a Gmail account and wish to comment on some of the pictures, please go directly to the ALBUM. Hopefully the rest of the pictures will be uploaded today, October 31.

Thank you, to everyone who came and who give us, the patients, so much support, in many different ways!

A very special thanks to my friend Anne, who dragged me along to the conference. Part of the Lyme Brain is that I find it hard to make decisions or to plan ahead. Anne would have none of that. Thank you!!

Meeting dr. Murakami

This weekend, Oct. 28 - 30, the ILADS Lyme Disease Conference will be held in Toronto. It is geared towards doctors, medical students, nurses, and health care practitioners. Several speakers will be talking, answering questions, and getting the desperately needed information out. Please pray with me that it will help push this scorned disease even more on the foreground? I'm not pretending that other diseases and conditions are less than Lyme, only that the fact of no available treatment in Canada, the lack of testing and the serious lack of support for doctors and patients must end or be changed.

ILADS Lyme Disease Conference

On Saturday night, a small group of us hope to meet with dr. Ernie Murakami - seen as a hero by many, yet pushed out of practice in BC.
Video link and more information about him can be found HERE, a CBC link from 2008.
Picture from the video is below. 

BC doctor urged to retire because of zealous approach to Lyme disease

Normal isn't

Things turned out rather difficult today. We were at work for too long after the servers were hacked again, without lunch, other than a banana and a few strawberries. By 4:00 pm, I told him I felt nauseous. Within minutes, my body temperature plummeted and I became totally disjointed, confused, weak and on the verge of collapse. Arno dragged me to Tim Hortons and made me eat some minestrone soup, which was the "safest" item they had within the severely restricted diet, and the quickest warm meal he could think of to get into me.

Later he said something to the effect of "a normal person's body wouldn't go into shock that fast" --- and that literally rocked my world. No longer normal, and I kid myself by pretending.

Dr. Eva Sapi - Bacterial Biofilms and Lyme Disease

Dr Sapi will be at the ILADS conference in Toronto at the end of the month. I'm still trying to understand the biofilm idea. Brain not playing along!


Added after the Lyme Conference:
I had the chance to meet and talk to Dr. Sapi, and to personally thank her for the work she is doing! Also attended her lecture. She happily agreed to pose for a picture:

More pictures from the Lyme Conference in Toronto are
HERE.

Brain healing

Yesterday morning on the way to work, I stopped at a spot with a wetland, that always fascinates me with changing colours, sometimes reflections, sometimes gunk covering the water - always something different. Took the picture below, among the 40 or so others that were squeezed off. Even though the Fall colours are fading, the reflection in the perfectly smooth water was so pretty! A camera can just not capture every nuance of the play of light and dark that the eye can see.

Then, driving home later, there was a talk on the radio about taking a short walk in a wooded area or park during the work day. Seems the part of the brain that is needed for sharp concentration, is healed while the other part of the brain that is nourished by nature, takes over for a few minutes. What a blessing to have something living and green somewhere, to look at, enjoy and to find healing at the same time!

I had the privilege to speak to a group of women last night about Lyme disease, the lack of treatment in Canada, the fact that testing is inadequate and that doctors are not equipped to diagnose the early stages. Those who try to help, are often pushed out by other doctors, for treating "a disease which doesn't exist in Canada". Mind-boggling.

We need more publicity about the early stages and the fact that Lyme disease is treatable if caught early; we need doctors to be aware of the early symptoms; more information must be posted everywhere, since knowledge is power; better and more accurate tests are desperately needed; and doctors and patients who are dealing with Lyme disease and the co-infections need to be protected from ignorant people who still deny it exists.

Let's hope and pray the ILADS* Conference in Toronto will be attended by many doctors, nurses, medical students and others in the position to constantly help get the word out, and to prevent more people getting sick and then being set adrift with no treatment!
(*International Lyme and Associated Diseases Society)

Silent Sunday

{Originally from and idea on Jay Mountford's blog}

Through the window today

This is not supposed to be a prize-winning picture, and just taken with the Blackberry, but the view of the tree through my window never fails to get some emotion going.
When the new apartments (background) were being built, I begged the contractors to leave my tree alone. Since it wasn't really in the way, they didn't touch it. Every season the tree wears a different attitude, it seems.
Right now, the fallen leaves around seem to be soft, like a quilt of warm memories.

And a quote comes to mind, since several people dropped by today to comment on the information session I did yesterday about Lyme Disease:
"Healing does not mean going back to the way things were before, but rather allowing what is now to move us closer to God." Ram Dass (born April, 1931)

Linking up with this or that Thursday

Wordless Wednesday: Nature's Fall Salad

Lyme disease is a thief.

It has stolen so much of life, of our family, of the essence that I thought of as ME.

Creativity used to come easy and as natural as breathing. Now it is a struggle, as if there are walls everywhere between brain, eyes, hands and inspiration. If it doesn't hit me in the head -- like an apple falling off a tree while others are being picked, and landing inside a large dandelion --- I have to go looking for inspiration. But here it is. The apple dropped into the soft green leaves, and it is like a hand is gently holding the apple aloft, showing off the deep colours, the gloss of Fall sunlight, the bounty of nature around us.

And I'm deeply thankful to be part of life, of finding joy in unexpected places, of getting on with this fight against this miserable disease which "doesn't exist in Canada". My job is to hold it aloft, to warn others, to make sure the voices are never silenced, and help others protect themselves and loved ones before it is too late.

Ask me about Lyme disease. Chances are I might know more than your doctor does. Because my life depends on it.
Enjoy this Wednesday!

Add your Wordless Wednesday - it is a joy to read them!

Wordless Wednesday: Fractured heel

(Terrible cell phone picture ...) Not exactly wordless, but it DID happen on Wednesday! Son alone at work, waiting for his lift. Son, being male, not listening to good advice not to go on the ladder to move certain beams around. Son fell down. Lots of annoyed yelling at himself (I was told). Discovered no ice. More yelling. Came home, can't put weight on the foot and thigh in pain as well. Being male, wouldn't be taken to be seen by a doctor. Mom insists there's a fracture. Next morning, ER stop with Mom taking no nonsense. Two hours later, splint on, crutches in place, fracture confirmed. Could have been worse, though! Picture shows son with me at my second job, in wheelchair, crutches waiting, leg propped up, and working remotely from my laptop. Going to be an interesting Canadian Thanksgiving this weekend!

PICC line

PICC line
Originally uploaded by MeerkatMarlene

The line was inserted on Nov. 30, 2010 to deliver 2000 mg of antibiotics (per day) directly to the bloodstream in the fight against Lyme Disease. After some weeks, my body rejected the meds, and the line was pulled on Feb. 2nd, 2011. Then I was off the antibiotics, the infections crept back, my body took a major whack and on March 17, I was officially abandoned, like thousands of other Lyme patients in Canada. We have to go to the States for treatment. If we're lucky.

Wordless Wednesday: Last Roses of Summer

The roses by the back door this morning, dripping with golden Fall sunrise and nighttime rain. A single strand of a spider's journey touched the top of this group.

Goomba the grandbunny

 

Goomba is a sweetheart. He really belongs to Theo and Jenni, but is living with us for a while where he has more room to run around. He especially likes to be on the enclosed porch, and would stay there for hours if we let him.

Food restrictions

Such an age as this!

Today

To BE alive in such an age!
With every year a lightning page
Turned in the world's great wonder book
Whereon the leaning nations look.
When men speak strong brotherhood,
For peace and universal good,
When miracles are everywhere,
And every inch of common air
Throbs a tremendous prophecy
Of greater marvels yet to be.
O thrilling age,
O willing age!
When steel and stone and rail and rod
Become the avenues of God-
A trump to shout His thunder through
To crown the work that man may do.

To be alive in such an age!
When man, impatient of his cage,
Thrills to the soul's immortal rage
For conquest-reaches goal on goal,
Travels the earth from pole to pole,
Garners the tempests and the tides
And on a Dream Triumphant rides.
When, hid within the lump of clay,
A light more terrible than day
Proclaims the presence of that Force
Which hurls the planets on their course.
O age with wings
O age with flings
A challenge to the very sky,
Where endless realms of conquest lie!
When, earth on tiptoe, strives to hear
The message of a sister sphere,
Yearning to reach the cosmic wires
That flash Infinity's desires.

To be alive in such an age!
That blunders forth its discontent
With futile creed and sacrament,
Yet craves to utter God's intent,
Seeing beneath the world's unrest
Creation's hugs, untiring quest,
And through Tradition's broken crust
The flame of Truth's triumphant thrust;
Below the seething thought of man
The push of a stupendous Plan.
O age of strife!
O age of life!
When Progress rides her chariots high,
And on the borders of the sky
The signals of the century
Proclaims the things that are to be-
The rise of woman to her place,
The coming of a nobler race.
To be alive in such ang age-
To live in it,
To give to it!
Rise, soul, from thy despairing knees.
What if thy lips have drunk the lees?
Fling forth thy sorrows to the wind
And link thy hope with humankind-
The passion of a larger claim
Will put thy puny grief to shame.
Breathe the world thought, do the world deed,
Think hugely of thy brother's need.
And what thy woe, and what thy weal?
Look to the work the times reveal!
Give thanks with all thy flaming heart-
Crave but to have in it a part.
Give thanks and clasp thy heritage-
To be alive in such an age!

--Angela Morgan

The Politics of Lyme Disease

(download link is below)

A friend gave me pages from a magazine with a long, detailed article about Lyme Disease, an infected farmer and his struggles to get diagnosed and treated in Canada.
Lots of information, details, pictures, quotes, interviews with other people, stories from other patients and their (mis)treatment by the medical profession, etc.

I've scanned and made a PDF of the article, since the magazine does not make it available online. If you want to download and print to read, please go to the 4shared link. The folder contains also two of the recorded items a friend made for me (one from May 2010 and the other from May 2011).

Choose the file you want to download and a new screen opens. Click the green Download button and wait for the countdown to reach 0 before you can see the download link.

Link to the page to download: Click!

Article is from the magazine, "Better Farming", May 2011 edition.

Simple pleasure = a slice of bread

Oh man, just had a total enjoyable moment! Since the doctor put me on the strict diet - absolutely no sugar in any form, no potatoes, no starch, no gluten - I've been trying to adapt and make do. Having brown rice instead of white was no problem, just had to tweak the rice cooker a bit in order to get it nice and soft. But -- missing a simple slice of bread, sometimes just with peanut butter (no peanuts allowed either) - that became a physical pain now and then. It was so easy to come home from work, and have a slice of whole-wheat toast sometimes since we would seldom have supper before 7:30 pm or later.

Now, the pure diet of proteins and greens missed something. Sure we found crackers, but they don't fill the hole! Nice for a snack now and then, but not a meal.

A while ago we visited the celiac store here in town, called Melissa's. With the owner's help we went through everything, trying to find a bread or a loaf mix without sugar, yeast or gluten. Not easy!

We found one, but have been putting off baking it. Today, I was desperate for something more solid to eat. Fruit and plain yogurt for breakfast, black rooibos tea -- by 10 am I needed something more. So, mixed up the bread, adding a packet of Stevia (sweetener), an egg and milk to the mixture.

The loaf baked up beautifully and sliced cleanly, without crumbling like some other of the gluten-free loaves we've seen before.

Last night, caring, dear friend Carolyn gave me a jar of almond butter since I'm not allowed peanut anything. So --- toasted up a slice of this loaf, slathered nut butter on top, and tasted carefully .... only to almost swoon with the joy of it!

Arno promised me toast, bacon and eggs for tomorrow morning so two slices in the fridge and the rest frozen to be used as needed.

Who knew that a simple slice of bread would make my day?

Sunnybrook not so sunny

Since the severe reactions and my body rejecting the meds in December and January, I've had to set up drug allergy testing at Sunnybrook Hospital. For those not in the GTA, that's way across the city, driving along the super-highway named 401, the busiest in North America, and not something I fancy!

So, date made in early March for June 8th, at 7:30 am. Psyched myself up for the drive and managed it with not too much stress - other than the borrowed GPS sucky cup thingy dropping off in the middle of the drive and scaring me half to death!

Arrived at the Hospital at 7:00 am with nobody yet waiting, which was very pleasing, knowing that the 5 hour ordeal can start pretty soon! Until I tried to report to the office and was faced by an irate woman, who told me there were no tests scheduled for June 8th, that she has been there for three months and there never has been a test for that date.

When I pulled out the original sheet with the handwritten notes (by the clinic attendant, no less, very distinct handwriting), showing exactly that date, she became even more agitated, told me she was alone, had no nurse, and what did I want her to do?

My reply that I had sent a fax two days before the test, to list meds and supplements and to ask if any should be dropped for the allergy test on June 8, she tersely said she gets 40 faxes a day, has no time to look at them all, and is "a lone paper-hanger".

Yes, I've filed complaints with the hospital immediately, but still haven't heard back (3 days later). So wrote a letter and mailed that off today. I have to go back next Friday for the test to take place, even though the original nurse told me that drug allergy testing is only done on Wednesdays. Hopefully this one will be confirmed properly before the trek is attempted again!

Positive notes: I braved the 401 and survived it without making dents in the steering wheel and chewing lips and cheeks to pieces! So, it is a practice run for the next three times to go for three different allergy tests (Zithromax, Penicillin and Cephalosporins).

Trying to cope with the new regimen

The last month has been a whirlwind!
In March, my treatment in Canada has been halted unexpectedly. Eye infections came fast and hard, 6 in less than 5 weeks, one landing me in ER. More dramas happened and I knew I was in trouble.

On May 3rd I managed to see a Lyme doctor in the States (7 hours away), who diagnosed me with two co-infections, Bartonella and Babesia. She gave a heap of prescriptions, which I had to try and fill in Canada or order and pay for myself.

The severly strict diet is not fun, and an ongoing process to try and prevent the shakes and light-headedness as my blood-sugar falls. These Lyme bugs thrive on sugar, so starving myself from even the smallest bit of sugar, helps to starve them too.

The meds and supplements take hours to sort out and put into containers to try and keep them straight. Here's a view of some of them to take every day (in the foreground), minus the 4 liquid supplements, the probiotics and another vitamin.

It is an adventure trying to keep them straight, since some must be taken first thing, some 20 minutes before a meal, some not with another, one with a full meal, the probiotics of course an hour apart from any antibiotic ... Fun!

I firmly believe that the Auum Omega3 Sublingual oil I started using in June 2009, helped more than just a little to protect my brain from the ravaging effects of the Lyme spirochetes, and helped my energy levels and thought processes. My testimonial is online, if you want to read that. And if you want to try Auum yourself (only available in Canada), please let me know.
CLICK: Auum Omega3 Oil Choose the "Adults" tab - currently the 2nd entry on the page. The video clip can be played if you like to hear more. Auum is also used successfully for ADD, ADHD, Autism, Aspergers, and others.

Lyme Awareness Walk in Virginia Beach, May 21

No postings on the blog during the last two weeks, while we were on vacation. However, while we were away, friend Amanda in Virginia Beach cajoled family and friends to join her on a Lyme Awareness Walk. She wanted T-shirts, so I ordered from trusty Vistaprint to be delivered at her address.

There were over 200 walkers, and the first effort brought in several thousand $ to be used for research, etc!

I'm so very grateful to the five of you for walking and spreading awareness. Thank you!

Another meal - eggplant

Some friends wanted to know how the new restricted diet is going.
Well, inventing all new things as we go along!

Last night's meal was a concoction of fried onion and garlic, eggplant sliced in and nicely softened in cold pressed Extra Virgin Olive Oil (EVOO). It looked a bit bland, so in went the trusty green standby, broccoli!

It was great, just enough for a meal, and followed by fresh berries (strawberries, blackberries and blueberries) with a little Stevia, really hit the spot.

Combination picture quickly made, not prettied up with any shadows.

When Arno came in much later from his seminar, he was sniffing the air and commenting on how good it smelled!

Starting the restricted Lyme diet (doctor's orders)

With the added diagnoses of Babesia and Bartonella infections, the doctor was serious about me sticking to a very strict diet to starve the bugs and support the antibiotics: No yeast, sugar, white flour, cheese, mushrooms, overripe fruit, alcohol in any form, and a few other things. For the anaemia, eat red meat and have as much green veggies as possible.

So - we went shopping to see what we could find. It is not easy to find something that has all three the requirements of no yeast, no sugar and no white flour! But we managed and I baked some muffins last night. Should have added Stevia (sweetener) to the mix and not just the poppy seeds and lemon juice!

Picture of some of the items we bought. The blue box is the Stevia sweetener, for when needed. I've given up most sugar anyway, but it would be nice to add to home-made tomato sauce for pasta, and we've added it to home-made lemonade as well.

Breakfast was the usual IsaGenix shake with berries. Lunch (too late, though - was feeling very wobbly by then as the blood pressure plummeted) was brown rice, broccoli and red pepper and Arno put a steak on the bbq with just Montreal spice on it. Fried onions on top - bug-busting capabilities in onions and garlic!
Isn't it pretty?

Since it was Mother's Day, Theo wanted to cook a special meal. He did his best to stay within the restrictions, even though I told him I won't keel over just yet! He made it all mostly green --- in "honour" of Lyme Disease month. Made his own pesto sauce which I enjoyed on the salad, and the grilled chicken was delicious! Dessert was fresh strawberries, sprinkled with a little bit of Stevia.

All in all, not a bad day of sticking to the rules! I'll miss the potatoes yet, and the mushrooms, not to mention the cheese ... but at least eggs are allowed!

After the Lyme Rally

YESSSS! We did it!! About 50 or 60 of us, several with canes, some in wheelchairs, others supported by family and friends, gathered at Parliament Hill, Ottawa on May 6. The weather was beautiful, and all of us could find hope, support, love and shared stories in the process. Trudy, you done good, girl!

Trudy, with the cane, arranged the rally. To the right is James Christie, who has suffered from Lyme for 21 years, but with the help of Steve (picture link at the end of this entry), is hopefully well enough, stubborn enough, and planning to cycle 2000 km around Ontario to bring Lyme Awareness.

We want a few basic rights: To have better tests, more awareness, support for the disease, and the right to be treated in Ontario / Canada instead of having to go to the USA. Read the signs --- and know, whenever you meet a Lymie, no matter how good they seem to be, there is always, always pain. We learn to hide it well!

Pictures: LYME RALLY IN OTTAWA

If you want one of the T-shirts, please read the next entry in this blog, just below this one, or click on the right of the page to go to the earlier entries.

Link to the radio interview with Goldhawk on "Goldhawk Fights Back" was recorded by a friend, will be cleaned up from ads and the download link added to the blog soon if anyone is interested.

T-shirt and buttons for the Ottawa Lyme Rally

Struggled with yet another neglected Lyme-related eye infection in the left eye last week. Opthalmologists didn't know what to do. Hopefully help will be coming from a doctor in the USA, who went out of his/her way to arrange a cancelled appointment for me. (I'm keeping it ambiguous for protection. Don't think we're paranoid. We've been proven right and we're doing our best to protect our few LLMDs left (Lyme-Literate Medical Doctors).

We spent the weekend, among other things, making a few T-shirts for the Ottawa rally. As it happens, next Sunday will also be Crazy T-shirt day at church, and I can use the same shirt for that, as well as boost May as Lyme Awareness month in Brampton!

There might be three extra T-shirts left, all size Large, if you would like one. Just to cover my costs, $12 should do it. Let me know if you want one, please?

BUTTONS
Also made about a dozen of these buttons below, three slightly different designs, all featuring the green ribbon and the legend "May is Lyme Awareness Month". Those should go for about $1.50 to cover costs. The paper inside is transfer paper, so can also be used to iron onto the pocket of a T-shirt or something later if you wish. Size is about 2.5 inch / 7 cm in diameter.

Let's make this May a very Lyme Aware month! Never know when the knowledge might help save someone else's life or sanity.

Awakening for Easter

Easter Sunday -- such a most excellent day was today! Full of energy, good hope, and fewer symptoms. Just for today, a good day.

Saw a healer on Tuesday, got lots of supplements, and have been using them along with the Auum oil and Oreganol for the past few days. If they helped, then great, but I think the main improvement was the re-discovery of hope again, and the sloughing off of the feeling of sorrow and probably a sort of mourning since March 17.

The music in church was so great, and singing the beloved songs, to be with the Easter people - how very blessed I am to be fighting Lyme Disease with the help of those who care and support!

Thank you, my friends.

Lyme Disease Rally in Ottawa - May 6

Things are coming together for our Lyme Awareness effort on Friday, May 6, 2011, in Ottawa!

(Click on the picture for a bigger one if you want to print or share.)

We need to ask for awareness for the public, for better and earlier tests to detect Lyme Disease, for research so that more is known about this fast-spreading infection, and for protection of patients and the doctors who treat them.

If you can join us, please do!!

Lyme walk in Virginia Beach, May 21, 2011

May is Lyme Awareness month.
Great big thank you to my friend Amanda, her husband Paul and their son Edwill for getting together a group to take part in the Lyme Walk in Virginia Beach!
She asked for my picture to put on their T-shirts, but the closest I could get was to use an image of my familiar, so to speak, the meerkat.

I can load a bigger version of the image if anyone else wants to use it on a T-shirt or something --- and my thanks to all, for getting the message across.

The walk is officially called, Walk to Defeat Lyme Disease. More information can be found on the link here if you are interested.


PARLIAMENT HILL, OTTAWA
** In Canada, there will be lots of walks and rallies going on. Join us in Ottawa at Parliament Hill if you are anywhere near there on May 6, 2011!
More information and time for the rally can be found on the link here.

To see a bigger view of this poster on the right, please click HERE.
Thanks for reading and sharing!

Healing Prayer Meeting

There is not much time to update the blog, but this graphic was quickly made, from a gift given today, and the greater gift of a group of friends taking time from their own busy lives to share in a healing prayer meeting for me. My appreciation can not be expressed, for all the care and concern so freely and warmly given.

Sweet jam of summer

 

Three days this week - three different kinds of berry jam.
First we picked wild blackberries in the rain on Sunday, fighting off mosquitoes. The jam was cooked on Monday - my first try at blackberry jam.

Tomato jam is from the tomatoes from friend Valerie J's garden. With little slivers of ginger, it is comfort food for us, and something so many of our Canadian friends have never heard of, but are willing and eager to taste and to adopt.

Our raspberry bushes are literally covered in berries! So, today it was the turn of this wonderful fruit that we first tasted fresh here in 1997. As soon as we had our own house, we planted four --- but by now they have taken over the back yard, and we gladly share with squirrels, birds and sometimes friends!

Quilled frog pond

Because of the Lyme disease, I've lost a lot of fine motor skills and strength in my hands. For moths I haven't touched any artistic projects, since it was just too disconcerting and upsetting to have my eyes all blurry and the hands not doing what they were supposed to do!

However, being on the antibiotics has created another set of problems, but I've regained much of the use of my hands, as well as other benefits.

A weekend ago, I tried my hand at quilling again. Nothing fancy, and just playing, using old CDs as the base. The finished project is not as "tidy" as I would have wished, because the application of Mod Podge at the end relaxed the paper more then planned, so the coils opened - but since the theme is water with ripples all over the place, I guess it doesn't matter.


The edge consists of a double layer of "rocks" made of different combinations of brown and cream strips. The water has different colours and I tried to make the rings even more irregular by folding the paper before rolling it, where the frog dives in. I'll add some more green leaves to the one big water lily.

The base has about 5 old CDs glued together. The top is covered with a layer of paper, to which I've applied Mod Podge before starting to glue down the quilling.
The frogs were all made separately, sealed with Mod Podge and allowed to dry before applying to the CDs.

Everything is paper, except the CDs and the googly eyes!

It was fun to make, and forcing the stubborn hands to do the same movement over and over again, while knowing that the rocks and circles didn't have to be completely uniform in this case.