Archive for the ‘Uncategorized’ Category

Big Shoes to Fill

Dear Madison Lyme Support folks,

I’m trying my hand today at writing my first post.  Now, remember, I’m of the “old” generation that knows just enough about computers to get into trouble.  🙂  So forgive my mistakes as I’m a neophyte.  Also, try to remember that I am attempting to fill some incredibly large shoes.  How Della did all this when she was at her sickest, is beyond comprehension.  I want to thank her again for her dedication to those who are too sick to have a voice.  Her presence in the Madison area particularly and the worldwide Lyme community is a blessing to all who know her.  I remember my first emails, received with fear and trepidation, as I didn’t know where to go for help.  Her advice always proved true and valuable.  So often in this illness you find yourself in a position where you need answers, perhaps about a particular doctor’s costs or regimen, and your own brain can’t function.  This is where Della and others from the Lyme community swept in and gave me the information I needed, provided necessary feedback, and encouraged me.  I can’t tell you how desperately I needed encouragement.

So, soon and very soon, I will be setting up our next support meeting.  I would like all of you to please consider what you want from the meetings and come prepared with suggestions.  After all, this is your baby.  What helps you the most?  Does just being around others in a similar situation encourage you?  Do you have particular questions you need answered?  Are you interested in subjects such as diet and nutrition?  Perhaps we can pool our knowledge and help each other as many of us have tried various things over the years and have gained experience.

Until next time, relish the good days, endure the bad, and keep hoping and believing for better,

287Alicia

Dearest Madison Area Lyme Support Group Members and Community,

Untitled-1UPDATE;  A support group attendee has volunteered to take on the support group.  I am very thankful that someone is willing to pick up the torch.  There will be a time of transition, so please continue to be patient.  I’m confident that the meetings will continue to be a great way for people to receive support from others.  Keep checking back to the website for future meeting dates.

 

It has been 5 years since I started treatment for Lyme Disease and co-infections.  I started this group shortly after I started that journey because there wasn’t a local area support group and I was searching for support from other people who were battling this complex and frustrating illness.  It was hard to start when I was so sick and struggling so much. I took on the task to help myself and others but at this time I have decided to step down as the Madison Area Lyme Support Group leader.

Tomorrow, Sept. 6th will be the last support group meeting that I host. 
Saturday September 6th (2014) from 2pm to 4pm, Madison Pinney Branch Library, 204 Cottage Grove Road, Madison, WI 53716
 

I have met so many wonderful people through this support group. As new people continue to get infected people will always search out help and support online and face to face.  Even though I do not want anyone to fall through the cracks I have decided that I need to create space in my life for other endeavors.  It is hard for me to let go of something that I know helps people so much but, I am hoping that someone else in the Lyme community will step up and lead the group just like I did 5 years ago.  I’m willing to hand over informational brochures and materials, and give advice to anyone looking to pick this responsibility up. Basically they would be the contact for the website (which I might be able to just transfer) and the person that schedules and reserves the meetings at the libraries. You are supposed to be present at the meetings but if you had someone helping you then if you are too sick they could fill in or you just cancel the meeting and post that on the website and anywhere else you posted the meeting information.  I use to do that in the early days of treatment.

For now, I’d like to direct everyone searching for help to the many online resources and support groups listed below.

I will keep the website up for now so that people can find these groups but eventually the site may disappear when someone chooses to start their own group with another website. I will be taking the contact option down, so it’s important to use the groups below to seek help.

 

Wisconsin Lyme Network

Wisconsin Lyme Network is a statewide non-profit.  It’s a great resource that lists support groups around the state, both online and face to face.  Click on this hyper link to go to their website: www.wisconsinlyme.net. Or you can contact them directly using this email address to ask questions (including doctor recommendations).  wisconsinlymenetwork@gmail.com

 

 

Wisconsin Lyme Yahoo Support Group

Contact: Mike Nickel miken@tds.net

Group URL: http://health.groups.yahoo.com/group/Wisconsin-Lymesupport/

Please e-mail to miken@tds.net to receive information on monthly support meetings throughout the state and other help.

 

 

Wisconsin/Illinois Lyme Facebook Group

This Facebook group is a great way to connect to others who are suffering from Lyme Disease and other tick borne diseases.  Here’s the link to the group.  https://www.facebook.com/groups/wisconsinillinoislyme/

Under Our Skin 2: Emergence

The investigation continues! UNDER OUR SKIN 2: EMERGENCE is available on DVD starting today. Reconnect with the characters and controversies from UNDER OUR SKIN, discover how deep the institutional conflicts and collusion extend, witness the surge of Lyme disease worldwide, and learn about the latest Lyme research and activism. http://www.underourskin.com/sequel/

Under Our Skin

 

ILADS Release New Standard of Care Guidelines

ILADS

 

New Standard of Care Guidelines for Treating Lyme and Other Tick-borne Illnesses Released by International Lyme and Associated Diseases Society (ILADS)

September Meeting Scheduled

Saturday September 6th (2014)

from 2pm to 4pm

Madison Pinney Branch Library

204 Cottage Grove Road, Madison, WI 53716

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