Friday, June 14, 2013

Of Prayer Shawls, Doxycycline and Vets

Prayer Shawl for a friend

Yesterday I was privileged to pass on a blessing to another friend in the form of this lovely shawl. Prayer shawls - I've found warmth, support, love and emotion in the shawls given to me.  There is one everywhere I go, ready at an instant's notice. The people who gave me the various shawls I use and have used, are special, close to my heart, supporters of my life. It is a gift to share with others, through the many people who spend hours knitting and creating these unique gifts.  
Prayer of Blessing: May God's grace be upon this shawl...warming, comforting, enfolding and embracing.May this mantle be a safe haven... a sacred place of security and well-being...sustaining and embracing in good times as well as difficult ones.May the one who receives this shawl be cradled in hope, kept in joy, graced with peace, and wrapped in love.Blessed Be!
 © 2013 All rights reserved.
By: Janet Bristow - 2000
The next bit of this entry is a whine ... so please feel free to skip and start reading at the next bold line! 

My apologies. Disconnect. I'm feeling totally adrift and it has been increasing the last few days or two weeks. Noises from the neck again, which is stiffening up some nights. Sleep problems. Weight ballooning again. Had some weird bruises just appear. Hip pain. Nothing serious or like they were at the height of my Lyme fight. I've been off antibiotics now since February 8, was declared "in remission" on May 8. Everybody tells me how good I look. But I feel as if I'm no use to anyone and as if doing anything is a huge stretch. I try to walk every day, keep moving, even if just up and down stairs several times, but mostly outside to the mailbox on the corner and a bit down the street and back. 

Daily emails come in from people who have been bitten, or sick, or looking for treatment, desperately trying to find a doctor in our area. I'm so sick-and-tired-and-ashamed to write over and over again, there are no MDs available, and all the LLMDs are in the USA. Ours have been pushed out. And then to face the inevitable, "But why????" I'm ashamed because I've had treatment and that there's no easy answer to give to others who are struggling.  

My apologies, my good friends, if I'm absent or seemingly aloof. Don't mean anything by it but am helpless to stir myself. Just find days slipping away, disappearing while I sit and do nothing. Sit in the sunshine on a parking lot. Sit on the bed and almost watch TV. Sit in the car and watch the clouds. Sit with the laptop and look through hundreds of old pictures, but not reading emails or facebook, and not catching up with things like housework. Thanks to the friends who want to go out and meet for coffee, or enjoy a newly discovered place, or spend time at a friendly ball game, or plan to go away for a girlfriends' weekend. The joy I have while being with you, can never be explained. Thanks to my family for not moaning about the lack of vacuuming and dusting. 

Thank you for that and slap me out of my stupor somehow! 

Two upsetting articles to share

Maybe you know about this, maybe not. The first article here below really upset me. I checked with my pharmacy and found that the general price for Doxycycline in our area would be just over $1 per capsule ($82 / 100). A friend in South Africa checked and said the price there is about R25 for two weeks' supply, which translates to about $2.56. 

Now read this: Doxycline prices in the USA suddenly jump through the roof.
Article: Summer is Lyme Disease Season. The price of the drug to treat it just exploded.

Infection of Lyme disease through blood transfusions have long been a question I've asked, but it has always been waved away. A few months ago I spoke to a woman from the Canadian Blood Transfusion Clinic about Lyme disease. She said that someone who knows about a tick bite, should not donate blood for a few weeks, but can donate after 6 months because "the infection would then have been cleared from their system."   

I've now been sick since 2007, and been treated for very much longer than 6 months. Some people have been treated twice as long as I have, and they are still not well. I refer again to the Embers report which was mentioned on this blog in the post from October 25, 2012. 

Quote: "A new study by Drs. Monica Embers, Stephen Barthold and colleagues has found that the bacteria that cause Lyme disease, Borrelia burgdorferi (Bb) persist in monkeys after antibiotic treatment."  Read more 

Ehrlichiosis, Rare Tick Infection, Spread To 9-Year-Old Boy Via Blood Transfusion
 Article in the Huffington Post 

Warnings about tick populations exploding in the USA -- to vets, but not to humans? And any articles I've seen, even talking about Lyme disease, gives information about how to prevent tick bites but say nothing about how to find treatment. According to emails I've received, doctors are still showing patients the door when they come in to ask about Lyme disease. One man said he went in with a bulls eye rash and the tick still attached but he was assured it was nothing. 

Tick populations to explode in 2013
Quote: "For a number of reasons, tick populations in many areas of the country will likely explode this year, according to several parasitologists, so veterinarians should be vigilant about discussing preventives with clients."

Is 2013 the year of the tick?
Article found on the website of a vet's office in Etobicoke, near Toronto in the GTA - once again warning pet owners  LINK

Please be careful and vigilant without being paranoid!  More information always available from the CanLyme website, from the LDAO and other links on those sites. 

Saturday, June 01, 2013

Worldwide Lyme suffering

May is over. This was one of the busiest but also most rewarding months, creating awareness around Lyme Disease. People from all over the world took part in events, told their stories, stood up and asked for support, better tests, the right to treatment and the right to live their lives. I'm so grateful to have met so many people, working together, giving what time and energy, ideas and support they could muster so that others would be spared the pain so many of us had to live through.

Charlotte Therese Björnström from Sweden, who has suffered from this awful disease for 25 years, put together a video from footage, pictures and sound clips people sent from all over to create a small glimpse for others to see and share. There are voices from Australia, USA, South Africa, Spain, Switzerland, Finland, Germany, Canada .... translations are part of the film. For your own education, please take twenty minutes to watch it and to share with others:

The original music used as soundtrack in this video was written and performed by a young woman battling Lyme Disease herself. She is 19, lives in Australia and has been sick for ten years -more than half her life. Her name is Emily Madden*.

Right These Wrongs
We've been through a lot, we've been through it all, 
One day we stumble, the next day we fall.
Like anyone else we had dreams. 

Our lives were alight, once burning bright. 
Now fading each day is an uphill fight. 
And like anyone else, we want life. 

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall. 
To regain our lives and to right these wrongs. 

Identities lost, but only for now 
'Cause through all this pain, a strength has been found. 
And with everyone else, we'll be heard ...

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall
to regain our lives and to right these wrongs. 

We're not disappearing like they want us to. 
We're not going anywhere, anytime soon. 

This disease is spreading way too fast, and none of us can understand why we have to struggle so to get tested, diagnosed and treated. If diagnosed and treated early enough, it is completely curable. If left to ravage the whole body, nervous system, and all organs, it takes much longer to get under control. The treatment itself can do damage to the body, just like cancer treatment causes people to lose their hair, nausea and possible damage to healthy cells.

We are not trying to create panic or pandemonium. We want people to be educated and informed so that they can protect themselves. Look at it as giving you a safety belt or a parachute - what you do with it, is your decision.

Next event I'll be handing out information, with the help of friends, will be at Caledon Day on June 15. If you are anywhere near the counties of Peel, Halton Hills or Caledon in Ontario, see if you can drop by. Entertainment is free and ends at 11 pm with a fireworks show.

*Emily's story link: Emily's sick but Australia doesn't recognize her disease

Other stories to read:

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