Wednesday, February 29, 2012

Ok. here goes. I'll try to be brief. Lyme Brain strikes again. This is not to gather sympathy or anything, just a statement of facts and not knowing how to go ahead for the immediate future. Actually, I don't even know where to start so will just stumble on. And maybe my tale helps someone else on this hellish journey of getting rid of Chronic Lyme Disease. [Incidentally, why do we give it the "honour" of writing the words with capitals???]

Some friends know that I've mentioned about screwing up things - burning food, forgetting pots on the stove, not defrosting or cooking things properly, messing up recipes I've done for decades which were in my brain without thinking. Hubby would tell me I'm asking the same question several times; I can't follow certain movies or programs, and am scatter-brained where I was focused before. Hence, checking and double-checking everything, especially for my jobs (two different ones). I find it extremely hard to retain new information and to make things "stick" between reading and doing without checking back several times. And even then still mess up more times than not. I'm aware of some of these things if people tell me, other times I'm blissfully unaware. Makes me crazy to think I've checked something and then there are still mistakes. Major ones. 

The doctor in the States who is treating me, is trying to bathe my brain in Vit. B to regain some functions and creating more neuro-paths. I thought things were improving; I felt brighter, but still trouble with the things as listed above. Can't tell jokes any more, for one thing, which was always part of me. I don't know if I'll ever recover all that was lost. The pain is nothing - that goes with the damaged and dead nerve endings in the brain and elsewhere in the ole bod.

So, I've just had a meeting with my overseer. It seems on Sunday there were major issues with the overhead slideshow I'm supposed to do for the congregation. I create printed bulletins (or order or service, or programs) to list which hymns are sung that week, when there are prayers, etc. From that I do the slideshow which has the words of hymns, plus the words of prayers if given, the dedication, etc. I check everything two or three times to make sure it is all there.

Seems on Sunday I've left out two of the three hymns completely, for one there was only the chorus part, and there was no dedication.
For the e-newsletter, there were announcements left out. 
In other words, I screwed up. Bad. And I thought I'd checked everything so carefully.

So, I asked what they wanted to do. They are very good at supporting me, but if I don't do my job, they should not be paying me. I explained about the early Alzheimer's symptoms, at which point I broke down in tears. I don't want to know that my brain is so damaged. It was easier to be in the wheelchair last summer, or use the walker, because then people were naturally helpful or attentive. With the brain damage, it is all inside. Invisible. And I'm less than human. Less than me. Less than what I was or want to be. Invisibly disabled.

It is not fair for the congregation to struggle, for the minister to have to think on his/her feet when something doesn't come up on the wall.

I offered to take a leave of absence; and that they would be perfectly fair to let me go if I don't do my job. I offered to resign.Whatever they decide is fine by me.
I trust none of my own decisions right now. So - we wait to hear.

On the lighter side - you know you have Lyme Disease when:
  •  You look forward all week to a boring evening at home.
  • You can't wait to get into your long flannel pjs and crawl into bed with an electric blanket, socks and a travel mug of hot tea (and it is summer or the heat is on 22 C in winter).
  • One shelf in the fridge is filled with medication. 
  • It takes longer to rest than getting tired. 
  • When people say: You look so good. How can you be sick? 
  • When all the pharmacists and lab workers in town know you on a first name basis. 

Thursday, February 09, 2012

Lyme Day Walk - how far?

Goodness, this Lyme Awareness Day Walk is really taking off, and I'm so grateful for that, for the support and awareness circling out to others!

Right now we are hashing out the registration forms, so that people can register for the walk, order T-shirts if they want them, and get things firmed up. Hopefully registration forms will be on the LymeWalk website by this weekend, Feburary 12th.

But -- and this is the question from many --- how far is the walk? Is it a race? What are the prizes? What is the time limit?

No, it is not a race, as such. No time limit. No expectations, other than your presence and sharing the awareness with others. I'm hoping to offer a good prize to the person bringing in the most funds, though, through collecting donations from friends or family, but that's just a thought at this point and not a firm part of the planning.

The "formal" walk part will take around 20 - 30 minutes or so. See map here below or on Picasa (click the magnifying glass to enlarge on Picasa). Afterwards, there will be prize giving and draws, fun and time to talk to Lymies and families, sponsors, the artist who designed the T-shirt, play the Penny Sale, join the kids in a sack race or face painting, and just enjoy the day. I'm hoping someone from CanLyme will be there as well to share some information. Make sure you talk to the vet who will be there, about Lyme Disease in pets - they can be treated!

However, there are paved paths all around Chinguacousy Park. Those who want to walk more, or even jog a little after the Lyme walk, would be free and welcome to do so! It is a lovely park with lots to see. Remember to visit the greenhouse - it is free. Take the kids to the barn and the petting zoo. Walk around the ponds and enjoy sitting on the grass, looking at the ducks and other birds. You are welcome to bring a picnic and propane bbq if you wish. We are planning activities and fun for kids, and during the afternoon, after our event, the park will have a Midway, so families can really make an outing of it!

Ching Park map - click for larger view
Truth is, this Lyme Awareness Day is supposed to be a family outing, a time spent learning and sharing about Lyme Disease, of relaxing in the park with a picnic after the walk, and for Lymies and their loved ones to get the emotional support we so desperately need from each other. To know we are not alone, that others are suffering and struggling as well, can mean as much as a load of medication and supplements. And for those who are caregivers and friends, helplessly watching a family member in pain or struggling, this gathering is a way to feel they are doing something instead of just standing by.

Last year when Kim and I went to Ottawa in May 2011 to attend the Lyme Rally on Parliament Hill, it was an uplifting experience for both of us (and the others!) to suddenly see other green T-shirts, to talk and hear stories, and to say, "me too!" Together, we can face this battle. And teach others about it so that they might avoid the struggle we've gone through to get diagnosed, treated and well again.

Any funds raised on May 19th will be donated to the Canadian Lyme Disease Foundation. Their mission is to educate, to research and to teach about Lyme Disease. The dream is to one day have a testing facility in Canada where people with Lyme symptoms can go for testing, without having to face the battle of disbelief, scepticism and "it is all in your head".

Taking part in our Lyme Awareness Day, be it walking or as spectator, paying the registration fee or adding a few dollars as donation, bring us closer to this dream. Who knows, the next person you talk to, might have undiagnosed Lyme disease now or in the near future, and your information might help them on their journey.

Tuesday, February 07, 2012

Brampton Proclaims Lyme Awareness Month!

Very excited! I've just had confirmation that May 2012 will be declared Lyme Awareness Month in Brampton, Ontario! This is very good news indeed. Means that companies or groups supporting our Lyme Awareness Day on May 19, can get in on the action, posters and more.

We are working on registration forms, but people are already visiting the LymeWalkBrampton website! We put the site up early so that everyone who wants to take part, can book the date of May 19 on their calendars, and be aware of the plans happening.

Support from all levels has been wonderful, and I'm so grateful to volunteers, friends, helpers, contacts, connections, city Councillors and others for their immediate and gracious help.

The Lyme awareness items arrived yesterday - necklaces, bangles, silicone armbands, key rings, even teddy bears wearing ribbons with the green insignia, messages of courage, hope and support abound. Pictures will be uploaded and friends and family can already purchase them if they like. If we sell all before May 19, we'll just order more of the most popular items. Prices range from between $1 for the silicone wristbands to $10 or so for the Tiffany-style bracelets.  All extra funds will be donated to the Canadian Lyme Disease foundation at the end of our Awareness day.

Sunday, February 05, 2012

Swedish Lyme patients have to go to Norway for treatment

Picture from the Swedish radio page linked below
Pioneers Abroad Save Borrelia* Patients.
(Swedish Radio program - translated from this link. Also see the original post on this blog.)

Thousands of people suffer badly without receiving any help from Swedish health care.

After years of fruitless attempts to get treatment they turn abroad and get cured. But the patients have to pay the expensive treatments themselves since it's not recognized and approved by the Board of Health. They discard the treatment as dangerous and unscientific. Every year around 10 000 Swedes get Borrelia after being bitten by ticks. Almost all seek help and are cured by a brief round of antibiotics, if given immediately. But there are also several who do not seek help immediately, so the infection gets a grip on their bodies. A while later they get chronic Borrelia, an illness which, according to the Board of Health, doesn't exist. But in Norway & Germany patients are given antibiotics for up to a year, and get cured.

2008 was a tough year for Andrew, 45-year-old craftsman. His father passed away, he had stress at work, young children at home and his summer was ruined by a virus infection. During the autumn pain began in his arms and legs, and he sought treatment.

Antibiotics should never be longer than 30 days. That is the predominant route of many countries' health authorities. In Germany and at the Arena Clinic Borrelia Center in Oslo the patients are given aggressive antibiotics for a total of one or up to two years. Deadly, claims Welfare. - Not so, says Margaret Gabrielsson, who has just been declared healthy after two years of treatment.

Margaret and Andrew's stories are similar to that of many others. They are met by skepticism and neglect here in Sweden and so they go to the clinic in Oslo where they are met by listening, understanding health care professionals who take their concerns seriously. A whole new world opens for those Swedish patients.

Arena Clinic Borrelia Center in Oslo has helped thousands of people diagnosed with chronic Lyme disease to become healthy. But the costs mount up. Treatment is expensive. Blood sample analysis, dotors' visits, alternative treatments and not least, the aggressive antibiotic regimens were given either intravenously or in tablet form. A typical treatment takes about a total of two years and then the patient has been out of pocket somewhere between one hundred thousand and two hundred
thousand dollars.

In Norway the health authority pleased is pleased by dr. Rolf Luneng's work, but his clinic would never be here in Sweden. Anders Tegnell is Head of knowledge management at the National Board. It is he who gives out guidelines and guidance.

I wonder why Luneng's clinic is not allowed to be here in Sweden.

(*Borrelia: Lyme disease, or Lyme borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.)

Other stories to read:

Related Posts Plugin for WordPress, Blogger...