Bubbles

These bubbles in my head --- yes. That's right. I'm officially an airhead. All insults welcome.

Seems that the air trapped inside the skull after the craniotomy will take a while to disperse. I have this dripping or popping inside my head, which started when I was still in ICU. Quite funny, really - sometimes louder than other times, and often it sort of echoes inside my mouth or teeth.

At first the sound was mostly on top of my head and I could put a finger on the wound site and almost "feel" the sound which happened at the same time inside my mouth. No, not a pulse, I checked! The rhythm is different. This is a whole other animal galloping around.

Lately it seems the sound had settled in my forehead, just above the right eye. If you tap a forefinger on your forehead, not too gently, you'll more or less hear the same sound. Sometimes it is much louder than other times. I've tried taping the sound - like having Pop Rocks inside my mouth - but nothing recorded. Guess it is all in the mind ....

Two weeks since surgery, and it is utterly amazing how much healing has happened. Mind you, I do keep bumping my head! It freaks Arno out. I hit it when getting into or out of a car, I hit it on the wall at the top of the bed. You know how a hurt finger or toe keeps getting bumped and in the way? Well, it seems to work with a head too!

Saturday I gave it a really good whack when settling on the bed to read a bit. The pillow I had ready, somehow moved down and whack! Arno was so upset, he went into our storage space, dug out a foam mattress cover and with some painter's tape in hand, set to making a bed buffer for his whacky wife. He'll probably not be happy about me sharing the picture, but here it is! Double layer foam, stuck to the wall good and proper without damaging it. I said if the tape stays a while, it might pull off the paint. "Then I paint the wall again!" he declared quite adamantly. Good man. Yes, I know.

The kids are having fun -- I now have two knit hats to add to the collection covering the bald spot, courtesy of Jaco and Chelsea! Sunday morning the pink one made its debut at church. But I had to send a picture to ask if it is the "acceptable level of floppiness" or if adjustments might be needed. I have no sense of style, see? They also brought a handful of socks, some with half a face of a cat or pug on either foot. The pugs went along to the fairgrounds on Sunday, and amused some friends.

FALL FAIR FUN
The annual Fall Fair is over for another year. I love the fair, the smells, the sights, the people and the displays. Only wish we can somehow get more interest and have more people to take part! It is not about winning; it is about putting something in place to look at, to enjoy, to share, and to learn or teach. Did you know you can enter all sorts of crafts and hobbies, including baking, jams and jellies, knitting or crochet, antique items, flowers (both cut and potted), and more? Seriously - it is fun! Gardeners can enter their vegetables, including a class for the oddest shaped vegetable.

Look at these huge pumpkins, for instance, grown by young men in the community. The stalks top left are sunflowers, and the competition is for the tallest one.

Every year for the last five years or so, I've had the joy of being close to one of the raptors that were brought to educate and entertain visitors. Arno usually took the pictures. However, this year, he had the chance of holding the Bald Eagle as well. She is much heavier than she looks!

You can see the steri strips still covering his wound site. The stitch comes out on Wednesday. This time the wound seems more swollen than the previous time. We just hope it will heal as well again! We have the Miracle Oil all ready for application.


THE PORK ON THE PORCH
Today I received a phone call, saying that one of the kind church friends had left a meal for us on the porch. I just happened to be out at that time.

An hour later I arrive home --- and find no covered dishes waiting to be taken inside. What to do? I already sent a thank you, but what could have happened to the food? Nobody would have taken it from an enclosed porch, surely? And suppose there are dishes to be returned? I would have to check in and brave any discomfort.

Within two or three text messages flying back and forth, we determine that the delivery was made one street over. Now what? Do I try to find the house owners? Do I go and demand my food back? Do I leave it and hope they will enjoy an unexpected supper?

Too many questions, and too many options! I'm not so sure I'd eat a meal that suddenly arrives at my doorstep without prior notice! Suppose they toss it out? No, I'm off to find my food!

Around the block I walk, cell phone firmly clutched in hand, watching the house numbers. Two doors down from the target house, a lady is washing her car and fighting one of the obnoxious bees that seem to be everywhere this summer. We exchange pleasantries, and I wonder if she might watch where I'm going.

The house appears -- covered porch in sight - and I can see the containers from the sidewalk. All quiet. Nobody home. So I pick up the containers and purposefully stride away, arms full and eyes forward. Did anyone watch? Will I be stopped for stealing someone's food? Maybe if I move quickly enough I can be away before they start questioning what's going on!

Around the corner -- switch arms -- breathe --- go! Old bod protests against the sudden activity, clearly still trying to pretend to need to rest every so often. But here's our house, and a table. Phew! Breathe, woman, breathe! Hubby chooses that instant to call. I'm giving an admirable impression of  heavy breathing on the phone and can hear his concern mount on the other side. "Wait .... (wheeze) .... food ... (hiss) ... key .... (whoosh) ..."

All's well that ends well, and the kindly prepared meal is where it is supposed to be! Pulled pork and the freshest rolls, cabbage salad and a shepherd's pie to freeze for later. The generosity of people is amazing, and all we can do will be to pay it forward.

Little does number # Behind-us Street know that for a brief, shining while today they had supper all prepared and ready for them - and just as suddenly, it was snatched away, promptly done out of food!

Dear Life,
Today I'm thankful for laughter and misunderstandings, for cell phones and text messages, and for the many kind people around me.
Marlene

Report about the fair

My goodness, what a week! Exciting, busy, upsetting when talking to people who are sick and suffering without the luxury of a doctor to help or support them. A whole host of emotions worked through this week.

The Brampton Fall Fair started on Thursday and we had a Lyme booth there. I am also the Photography convenor, so Thursday was an interesting, long and busy day! But we managed to do it all. We didn't man the Lyme booth that evening, though.

A small part of the hall while judging is going on

 Friday morning dear hubby and Joe met at the fairgrounds to finish setting up the booth and tie the banners properly, since short stuff here didn't do a good enough job, haha! Then it started raining, and raining, until a virtual swamp appeared in the grass. We need the rain so no complaints. Just sloshing!

Arno holding the new banner - notice the water in the grass!

Friday afternoon I joined them and we stayed there until it became too cold and dark. Teenagers were out to enjoy the Midway. Rouxline joined us in the booth. I'm so very grateful to friends who lend their time to help reach out to others! One of the best contacts I made was to talk to a man from the Peel Police, who goes to schools to do safety talks. He is going to arrange a session at a local high school in the spring.

Saturday dawned bright and clear. Linda and David arrived and started talking to the crowds. We collected scores of signatures on the petition and handed out lots of brochures, answered questions and felt it was a much needed program to offer to people. We never spoke to large groups, but always to family units, couples or individuals. Most were grateful for the information.

Lyme Mobile and people listening, looking at banners, etc.

With Dave and Linda

 On Sunday, another lovely day, Jess came out with Mikki to join us. Again we spoke to many different people. One lady heard me on AM740 at some time talking to Dale Goldhawk - it was too funny! She was planning to come to hear Dr. Ernie Murakami in Brampton on Tuesday, September 18th anyway.

It was heartbreaking to hear some stories. One mother found a tick on her 7-year old's ear this summer. She took him to one doctor who said not to worry. Then a red circle developed and she took him back. A different doctor was on call and gave her 3 weeks of antibiotics. The boy's father was a Scout, and there was a warning posted on the campground where they were, so they were on the lookout.
What a difference education and information can make!

Arno, Jess and Joe with me under the CanLyme banner

At 4:00 pm the Homecraft prize giving session was held in the hall before we started breaking down. Lots of happy winners receiving their gift cards or certificates.

Katelyn had the most points in the Junior section

More winner pictures can be seen HERE if anyone is interested.

 Now - got to run and get a lot of stuff done, then prepare for Dr. Murakami tomorrow. Scroll down a bit on this blog if you want to see who he is. A hero in many eyes, for sure, and we are lucky enough to have him in Brampton, at Heart Lake United Church on Tuesday, September 18 to talk and answer questions about Lyme Disease!

Christmas greetings - stories, pictures and news of the year

Hello! So glad you stopped by! If you dropped in because you received our digital Christmas greeting, thank you for taking the trouble. If you want to keep tabs on when this blog is updated (very infrequently), you can either "follow" on the right, or just put your email address in the space on the right side. When a new post is added, you'll receive an email notification and can then stop by at your leisure.

Some updates about our year, 2011, with a few photo links are below if you want to browse!

Bigger version is HERE (this page will stay open)

About our news and updates --- I'll just pick a few items, but this is easier than sending lots of emails around.
Please scroll down the blog archives (links on the right) if you want to read more entries or posts, see the picture of my medication, look at pictures taken at the Lyme Disease conference in Toronto, and so on.

RECAP
In January I was told by a doctor that the whopping doses of antibiotics I injected daily directly to the bloodstream via a permanently implanted IV line (PICC), was "going to kill me" because my body had turned toxic or something. I had to stop the medicine. This was supposed to be the last push in the treatment for Lyme disease, which was started in April 2010 after being sick since August 2007 with some "unknown disease".

In February the Lyme specialist pulled out the PICC line, saying he would have to do some research to find out what sort of combination medications he can give me. I have been off the medication for a month by then, and symptoms were coming back fast and furious. Pain, confusion, balance problems, cognitive problems, neuralgia, anxiety, depression, all sorts of infections, lack of appetite, being cold all the time, extremely dry skin - to name just a few. Costochondritis (a painful condition because of infection in the joints of the rib cage) was also diagnosed then and is still not gone.

In March I went back to see the specialist and received a tremendous blow: He could no longer treat Lyme disease. Another doctor had lodged a complaint against him for "treating a disease which doesn't exist in Canada". I was set adrift, like hundreds of other Lyme disease patients. Doctors are being forced out of practice. In the USA, four states have now adopted legislation to protect doctors against prosecution if they are treating Lyme disease.

In the meantime, Arno developed a "blister" on his right eye. There is a leaking vein which deposits fluid on the lens, and makes it difficult to focus. It went away after a few months, but came back. In November he had cold laser treatment to try and seal off the leak. We have to wait several weeks to see if the fluid was re-absorbed. It is not painful, but just annoying when trying to focus on close subjects.

He is looking after me with care and concern, and I'm very appreciative. When I located a doctor in the USA who was willing to take me on as a Lyme patient and arranged to see me as quickly as possible, Arno took the time to drive me the 7 hours, through pouring rain, fog, hydroplaning car and unknown roads to visit. During that visit, I was also diagnosed with co-infections called Babesia and Bartonella. There should be more in this blog to read about that. I am now officially battling Chronic Lyme disease.

In May we took two weeks holidays for the first time in our lives! We flew down to Florida and spent four days in Orlando, visiting the Animal Kingdom and Seaworld, petting cownose rays and enjoying the creatures and the plants we love so much. Of course we took in a few roller coasters as well! A few pictures are here. 

Arno at Animal Kingdom

We spent a few days in Daytona Beach which we found beautiful and would love to go back to! From there we drove to Miami, with a detour to Cocoa Beach, and flew out the next day to Puerto Plata in the Dominican Republic.

While there, we stayed in a resort, but scheduled 6 SCUBA dives, spread over three days. We had to have a day in between, since after an excursion, I was sleeping 8 to 10 hours and had to have a day to recover! We loved it, the dives were great and we also managed some parasailing, something I've always wanted to do.

Someone took this pic of us

The new medication, as well as a severely restricted diet the doctor put me on in order to starve the Lyme disease bugs, made for interesting episodes, weakness, diabetic collapse and the like. Once again, Arno was a champion, looking after me, asking restaurants for special attention, and generally taking the responsibility of something I used to do for myself. I'm grateful to have him. Without that, I would have been a great mess!

Theo (our youngest) and Jenni are planning their wedding for August 2012. She is still studying - graphics design since she wants to be an illustrator for Children's books - and wants to finish her studies first. She just put up a site with some of her work. Click on the gallery link to see samples!  Jenn's Illustrations

Jaco decided to take a break from his studies and joined us working at the computer office in Bolton. He is doing a great job and we are all glad to have him there! He is doing inside work, removing viruses, helping to set up computers, writing a program to help us track time and jobs. Then ---- he fell off a ladder while alone in the workshop and broke the heel on his right foot! He was on crutches for 6 weeks, but seems to be back in good health now.

In September we had the Brampton Fall Fair again. I've been the Photography Convenor for a number of years now and am enjoying it tremendously. It saps energy, but is well worth the effort. That is the one volunteer position I didn't give up because of this miserable disease!
Those who like to look at pictures, they were divided into four days. I'll give the links below if you want to play. Day 2 is the one where I got to hold the big Bald Eagle.

• Fall Fair Day 1 - setting up and judging
• Day 2 - some of the exhibits and the Bald Eagle
• Day 3 - more entries and pictures of the Falcon show
• Day 4 - the horses and a guy making fantastic balloon creatures

In September I also turned 50. With the Fall Fair right across that day, I didn't even think about it. But Arno and our friends concocted a surprise party --- and what a surprise it was! Thank you again, everyone, for your love and support!

As a sudden inspiration, long-time email friend Amanda and husband Paul came to visit. Of course we had to take them to Niagara Falls, have them taste icewine, see the lovely town of Niagara-on-the-Lake, visit quaint St. Jacobs with the fabulous craft of the Mennonites, and admire the landscape, farmlands and beauty of southern Ontario. More pictures are HERE if anyone wants to look.

Our summer visit at the cottage belonging to friends, is always a highly enjoyable part of our summer, and we are grateful for the privilege. Sitting on the dock, looking at loons, watching the sunset and the sunrise, sipping coffee in the fresh air, sharing cooking duties --- peaceful restoration, recharging of batteries. And of course having some tubing on the lake as well! Pictures.

In November I saw the Lyme specialist again. She changed my medication (more info in the blog, under November 21). Arno has to sort out all the pills and supplements, since I get completely confused. At the moment my brain is acting as in the early stages of Alzheimer's. We're doing all we can to reconnect pathways and to stimulate the brain to heal itself. But sorting out more than 45 pills per day is mind-boggling at the moment! Not to mention cooking --- our electric rice cooker is one of the best things we ever bought. We eat a lot of stews and soup, steamed veggies and brown rice with pan-seared chicken or pork, or meat on the bbq (braai). Arno is enjoying having Jaco at home again, since the two meat-eaters can indulge a little!

Theo is doing lots of cooking and baking. His shortbread cookies are divine and in high demand for Christmas. He has been baking beskuit, makes pizza, has a fabulous potato soup and other things he makes regularly. Wonderful to see the boys being young men, and enjoying each others company.

This is enough gabbling - sorry if it bored you, but hope you are caught up a little about our lives! Working two jobs (two days a week at the church and three days a week at the computer place), keeping doctor's appointments and trying to get enough energy together to do some housekeeping seem to take more time than it did before.

Blessings to you and yours for Christmas. And thank you for keeping in touch, even if I'm bad at following up these days. Hopefully that will pass in another two years or so after treatment.

Christmas wishes