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?