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Showing posts from 2014

Truth Out

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I have to be honest today has been a rough day.  I got lost the the back roads with GPS and I lost it.  I wanted to scream and cry.  I couldn't get past the anxiety and frustration.  I was unable to navigate roads I knew as a kid.  I was shaking and when I finally arrived at my destination I had to sit in my car.  The thought of dealing with crowds of people made my anxiety worse.  I felt on the edge of the world and all the meanwhile my son needed me to come back down to earth.  I mean I am an adult I should be able to keep my brains together but I couldn't.  I was in pain and I was loosing it. After awhile I was able to get out of the car but my hands were still shaky from the rush of anxiety.  It was embarrassing to not be my happy cheery self.  I wanted to hide what just happened.  I was also having one of those body image days and worried how I would look in pictures.  I felt so ugly.  My skin was broken out but makeup can't make low confidence and anxiety go away.  L…

What do I say now?

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I've  been in Lyme disease treatment now going on six years.  I am using my skills for good and I'm an advocate.  But what else is there?  I am reminded of a time when my acupuncturist told me if you could spend all your energy on getting well and put it into something else what would you do?  I am still trying to answer his question.  I enjoy helping out other learning patients.  I help out with a lime disease support group.  I am trying to use my photography to get the word out about Lyme disease but again what else is out there for me?  I homeschool my son.  I clean my house.  I've really enjoyed going to the ocean a lot this summer.  Despite some of my down days and not feeling well I've been able to keep up with my friends.  But again I ask myself what else is out there for me.  I think soul-searching is normal.  And I know it 36 there must be other opportunities that I can take a hold of but again what do I want?  I know creativity is a big part of who I am.  On …

Ways to Get Help

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http://whatislyme.com/assistance/

Lyme Tap – The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need.
http://www.lymetap.com/
Lyme Light
Anyone diagnosed with Lyme disease between ages of 3-25 and can demonstrate a qualified financial need.
http://lymelightfoundation.org/
Meal Train
http://www.mealtrain.com/learn/what_is_a_meal_train/
Lyme Roommates
https://www.facebook.com/groups/445692835451476/445968085423951/?notif_t=group_activity
Lymies Seeking Roomates
https://www.facebook.com/groups/471747336171718/
Needy Meds
http://www.needymeds.org/index.htm
Make A Wish
Click on this link to go to “Make a Netwish”, a site to get monies, if you are in need.
http://www.netwish.org/Request_a_Net_Wish.html
Clinic of Angels
Click on this link to go to “Clinic of Angels”, a site to get monies, if you are in need.http://www.clinicofangels.org/ and click on the Financial applicatio…

Taking Flight

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When you have chronic illness we build walls of protection for the sake of our fragile bodies.  But it's until we push beyond those self built walls that we realize we are not flightless.  Our soul and spirit can permeate any walls.  It's up to us to let ourselves free.  We don't feel truly alive until we jump the protective walls we have built and push ourselves to the breaking point.  Sometimes we have to risk being shattered to be made whole again.  To become closer to our true selves.  We can't grow until we are willing to be challenged.  We won't feel alive and leave the zombie existence behind until we step outside our comfort zone.  I felt like a Lymie Zombie for far too long.  I am just now starting to live again.  I have told myself too many times I am not sure my health can handle this or that.  Yes there is a time to pull back, regroup and rest.  But I am learning maturity knows when to rest and where to push beyond. I can't sit here and…

Passion is the Fuel

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"passion is thefuel that keeps me going"
I've been in treatment for Lyme Disease and Co-infections now going into my 6th year.  I still sometimes look back and think man I've come a long way.  I can somewhat keep up with my 8 year old son and homeschool him full time.  I can walk a few miles every week and not be sick for days after.  I have stretches of time where I simply forgot I'm sick and enjoy what life brings.  On the days I need to regroup and rest I am reminded that I still need to pace myself and that Lyme Disease never seems to be fully gone.  I still worry about my son if he has Lyme Disease from me.  He now needs to be on a similar Celiac diet as me and is doing much better on it.  I never thought of myself as someone who could bring about change, be a leader, a loud voice in the crowd, or a trend setter.  I have always thought of myself as the Listener, the Advocate, the Loyal friend, the Kind one, the Gentle Soul.  I'm not saying any of these qu…

What Has Lyme Taught Me?

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It may seem very strange reading a blog post about how Lyme Disease has taught a person something.  But in the end, here I am typing away realizing that I have learned a lot over the years from being chronically and invisibly sick.  So often I have asked why am I so sick? What's the purpose of all this suffering? Enough already!  Well I'm not perfectly healthy at 100% its more like 70%.  But I can say looking back I've come a long way baby!  I currently homeschool my 8 year old son full time, run a house, deal with a woodstove, and try to have a basic social life.  I am super grateful for all the online support and local support we have now.  I look around these days and realize I can start to let into my life some really nice people.  I don't have to hide being sick and at the same time I don't need to focus or talk about being sick all the time.  I'm starting to find that balance.  I want more now from my friendships and I know now that I deserve it.  I'…

World Wide Lyme Disease Protest 2014

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All of this information is off this website:  http://wwldap2014.blogspot.com/p/about.html


Where: Global When: May 16-18, 2014 What: Lyme Awareness Events around the world
Ok folks! It's that time of year again to start planning and getting ready for the 2014 May Worldwide Lyme Awareness Protests and other events. Get your thinking caps on and let's start coming up with some good creative ideas for May.
Remember it's ok to have different kinds of events. Protests are fine too but please consider all different types of events. Anything that spreads awareness is good! Click Here for some Ideas!
The Worldwide Lyme Awareness Protest was started in 2013. Over 30 countries banned together to help spread awareness and protest over the lack of attention Lyme Disease gets. We want to bring attention to the need for research and education about tick borne infections.

Read Mission Statement Here

If you are looking to see if your state if involved please Click Here 

Click Here for V…

Helping Other's Presents: Taylor Brune

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I plan on posting those who need help on my blog once a month.  Please Meet Taylor Brune :)  Please Read her story through the words of her friend Alyssa.

"Hey there! My name is Alyssa Jenkins. I'm currently 22 years old, and I have been good friends with Taylor Brune since our junior year in high school. Currently, Taylor is undergoing some serious struggles in her fight against Lyme disease. In 2012, she was diagnosed with Type 1 Diabetes, but even after numerous tests and several years of trying to figure out just the right amount of insulin, Taylor was still experiencing deadly health problems. After many a misdiagnosis, one doctor discovered that she had contracted Lyme disease, most likely when she was 12 years old. Because the disease was allowed to run rampant for so long, she also contracted the co-infections Borrelia, Babesia, and Bartonella. She has also developed Pancreatitis which may or may not have advanced to Pancreatic cancer at this point.










   By …

USA Lyme Disease Patients Protest Posters and original songs by Lyme Warriors!

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http://worldwidelymediseaseprotest.bl... SONG ONE MUSICIAN AND SONG WRITERS: GUITAR BY MIKE SAUNDERS AND WRITTEN BY JANE EAMON AND LORRAINE HART. A US Lyme Disease Awareness Video using photos to represent the faces of Lyme Disease Survivors in the 52 states of the USA. If you want to participate in my next video with your photo please email me at angbet35@gmail.com
http://www.alisaturner.com/  Song Breathe by Alisa Turner and this is her website. You can get her songs on Itunes.

Song by Fornever performed by Myndsight  https://www.facebook.com/Myndsight/info  You can find their songs on Itunes.

William Shakespeakers - outbreak

An amazing rap song about dealing with Lyme Disease in Norway.  Yes it exists there too!  Please leave comments on the Youtube page and hit the LIKE button!  Give this artist some views!  One of the best Lyme Disease Awareness songs out there.

A message from the artist:  "My song about lyme disease, and the health systems which is totally neglecting the situation! Can be bought here: http://www.joakimskeide.no/about/buy-... profits will go to lyme research! This can happen to you to!"

https://www.youtube.com/watch?v=sEUCjpOC7a4 

Entering a New Year

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I have been getting to the point of 70% wellness but between homeschooling my son full time, being a full time housewife, trying to get bye financially without me working, and trying to at least volunteer teach at our local homeschool co-op and my son now on Swim Team, I am beyond stretched.  I haven't been blogging much about my Lyme journey because I thought I was getting very close to healing and I thought I didn't have much to offer.  Then of course I found out a few months ago my folate was super crazy low also deficient which as a Lymie and Celiac we all know that's not good.  It also explains why I had a miscarriage a few years back as well.  I also carry the MTHFR gene where I don't absorb the folate super easily from my food or supplements.  I need it retested now after a treatment to reduce my homocysteine factors.  I'm sure if this treatment has worked.  I still wait for the all shoe to fall.  I think five years of Lyme Disease treatment ha…