Wednesday, December 14, 2011

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.

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.
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.

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