Monday, March 31, 2014

What Has Lyme Taught Me?




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'm sure I will have other valley's in my life to learn from I'm sure but for now I will take a break and rest a bit right here :)  So here's my up to date list of what Lyme has taught me.

1.  I worth someone's time, energy, love, and attention.
2.  People can't give what they don't have. 
3.  I'm not the only one suffering.  If I am breathing today there is someone out there who is not.  So I should be grateful for at least that much.  There is always someone out there who has it worse than I do.  So its called perspective.
4.  I am the captain of my own ship and I will determine my own destiny.  Lyme Disease, circumstances and people don't get a say in it. 
5.  I own who I am and where I am going.
6.  My instincts and gut's are usually right.  So I have stopped doubting them and I listen.
7.  Just because someone in Authority says so doesn't mean its true.  Research, research, research, and then I am coming up with some of my own conclusions.
8.  I'm not perfect and I need days to be imperfect and let go and be okay with that.
9.  I need to be my own best advocate and then in turn I can be a good advocate for those around me.
10.  Finding ones purpose matters when the fog has lifted.
11.  I can use my passions in life like photography to help others and that's powerful.
12.  My voice has power.
13.  Find ways to give myself breaks as much as possible.  Even Spiderman needs breaks to recharge.
14.  I'm just me and that's not so bad. 
15.  Pace yourself the laundry can wait.
16.  If my son and I are alive but the house is a mess that was a good day. 
17.  Relationships matter more than things.
18.  Try new things its help you to feel alive.
19.  Do the best you can, how you can, when you can. 
20.  When you start to compare Journey's, you not only devalue your journey but someone else's.  Value your journey and value others just as they are.
21.  If you can Network Network Network.  It takes a village to help a Lymie get better.  You cannot do this by yourself.  At the same time listen to your gut if someone seems untrustworthy stay away from them.  Its better to be alone for a time than to be taken advantage of.
22.  Stop Fixing other people, its not your life to fix and save your energy to love and heal your own self. 
23.  Offering support is the only thing I can do.
24.  Don't forget to let a good thing into your heart.  If a Lymie friend says "you look great today".  Say "thank you".  Each tiny bit of goodness saved up helps you get through the days when no one is around and you are alone with your dark thoughts. 
25.  If you are angry, full of rage, can't stand the world, and have depression and anxiety, its not just the Lyme and Co-infections talking.  Ask yourself these questions:  Why are you angry?  Did someone hurt your feelings? Are you stuffing the pain of rejection by others?  Are you lonely?  Do you need a break from Lymie land? 
26.  Listen to your answers and see if you are able to get to the root of your internal pain in your heart and soul.  You maybe be able to find a solution and you may not.  But at least you listened to yourself and gave yourself a voice.  Be your own best friend.  Then when you can get a listening ear ask if you can Vent Away!  Sometimes blogging, poetry, a hot bath, listening to calming music can help calm the mind and body enough to hear the response of our hearts as to what we need to get through the day or week.  So start listening to yourself and be honest.  Your needs matter.
27.  When you put your needs and health above other friendships and relationships people may not like that at all especially if you were the giver in the relationship.  Since Lyme Disease turns us into Takers for a time make sure you can be as clear as possible about what you can give and NOT give.  People may not like what you have to say you are changing the boundaries of the relationship.  But the few mature ones will stay for the long haul. 
28.  While you are super crazy sick you will not be able to get your self esteem from what you can do.  You will have to find it in other places.  If you can make a small step in your health celebrate it!  Its a great way to build your self esteem and hope and faith.
29.  Don't be shy to ask for help.  Just be careful Who you ask for help. 
30.  Everyone has a battle they are in everyday.  You just might not know about it.  So don't assume someone can help when you want them too. 
31.  Be okay with someone else's No. 
32.  As best you can find ways to live outside Lymie Land.  At my sickest photography was the thing that let me feel alive and normal.  Making cards for others made me feel like I was able to do something productive and it helped put a smile on someone else's face. 
33.  Its okay if you cannot give to anyone else right now but also be open to the times you can give the very support and love back to others that you were given. 
34.  If you get better and choose not to be involved with the Lymie community or choose to help out.  Either choice is okay.  You are not less or more of a person either way.

Sunday, March 30, 2014

World Wide Lyme Disease Protest 2014

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

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 Volunteer Positions Needed

If your state doesn't have a coordinator or you would like to plan an event in your area, please contact lisa@whatislyme.

Please join these sites!
WWLDAP Pinterest
WWLDAP Google Plus Page
WWLDAP Twitter
WWLDAP International Facebook Page
WWLDAP US Facebook Page

Mission Statement
Worldwide Patients are raising awareness and protesting to highlight the need for:
1. Recognition that Lyme disease/borreliosis, and other tick-borne infections, such as Babesia, Bartonella, Rickettsia, Ehrlichia, are serious, and sometimes fatal illnesses.

2. Awareness of the fact that the transmission of tick-borne pathogens, such as borrelia, babesia, rickettsia, via blood transfusion is of global concern.

3. Agreement that Lyme disease/borreliosis should be listed as a notifiable infection. Notifiable status will aid in ensuring that the incidence and spread of this disease are monitored, a necessary precursor to determining the human suffering and socioeconomic impact of the disease.

4. Education of the healthcare sector regarding the accurate diagnosis of Lyme, which in some cases may be limited to clinical presentation due to limitations of serological testing.

*Education should ensure all doctors are familiar with the CDC caution pertaining to criteria for blood tests for Lyme: “This surveillance case definition was developed for national reporting of Lyme disease; it is NOT appropriate for clinical diagnosis...Surveillance case definitions are created for the purpose of standardization, not patient care.”

* Education that Lyme should be included as a differential diagnosis when considering other illnesses that are also reliant on subjective clinical presentation, or have no known cause. This includes, but is not limited to: Motor Neurone Disease (MND) also known as Lou Gehrig’s disease or Amyotrophic lateral sclerosis (ALS) ; Multiple Sclerosis ; Alzheimer’s; Parkinson’s disease; Sarcoidosis.

5. Education of the healthcare sector regarding affordable and effective treatment of both acute and chronic Lyme and other tick-borne infections. This includes the need to update the outdated treatment guidelines of the Infectious Diseases Society of America (IDSA) and to take into account the treatment methods of other Societies such as: The International Lyme and Associated Diseases Society (ILADS) and the German Borreliosis Society (Deutsche Borreliose-Gesellschaft : DBG)

6. Funding for research into tick-borne diseases. Including: Funding for medical research into accurate Lyme testing and treatment ; Funding for research into vectors and reservoir hosts to determine what diseases they may carry and transmit. 

Two Fundraisers are happening this year to raise awareness by setting up Billboards all across the USA! "
"As part of the Worldwide Lyme Disease Awareness Protest, the United States has started a Billboard Campaign.  We would like to place a couple different billboards across the US. These places are still being voted upon by Lyme patients."http://wwldap2014.blogspot.com/2014/03/worldwide-lyme-awareness-2014-billboad.html


1. The Dollar Donation Box  http://wwldap2014.blogspot.com/2014/03/dollar-donation-bucket-for-worldwide.html

2.  An Overcominglyme Auction here on this Blog!  Please stay tuned as I start to post items for Auction, dates of when it will happen, and get a chance to know those donating items!

If you are interested in donating items to be auctioned off for this cause please email me: angbet35@gmail.com  
Example of items so far: paintings, photographs, bracelets, purses, candles, any hand made items, Music CD's donated by the Artist, etc.


Wednesday, March 26, 2014

Helping Other's Presents: Taylor Brune

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 all statistics, Taylor should be dead. However, she isn't, and she has finally found a doctor that is able to help her. Your contribution to this campaign could help save Taylor's life. She and her family no longer have the funds to continue paying for her treatments. This is her last life-line, and you could be a part in saving it.

What We Need and What You Get

     In order for Taylor to complete her treatments, we need to raise at least $5,000. This will cover the cost of Taylor's doctor's appointments, the 10 medications that she needs to refill at least twice a month, and past hospital bills that her family is still paying off. Any money that surpasses the goal will go towards further treatment (if needed) and towards Taylor's family to help them out with their financial struggle.
     On top of saving a life and helping a family in need, we're offering some exciting perks! Everything ranging from social media shout outs, to hand written thank you letters, to personalized coffee mugs! We want to give back to those who have given.

The Impact

     Taylor is a sweet soul who would put her life on the line for anyone in need. Even during this deathly sickness, she manages to keep a smile on her face and encourage others who are struggling with just about anything. It would be great if during this most difficult time she's ever experienced, we could band together as a group and show her that people care. 
     This is also an opportune chance to spread Lyme awareness. The symptoms of this disease often go unnoticed or misdiagnosed because so few people actually know what they are. Spreading awareness could help save Taylor and others who have/are/will suffer from this destructive disease.

Other Ways You Can Help

     Can't contribute financially but still want to help? NEVER FEAR! You can still help by sharing this campaign with anybody and everybody. Friends, families, businesses, anyone can help! The more of a commotion we can make about this the better! On behalf of everyone that has been supporting Taylor and helping her through this hellish time, THANK YOU! Your support will mean the world."  

To support Taylor's Fundraiser please visit:  http://www.indiegogo.com/projects/the-fight-against-lyme-meet-taylor-brune
Money raised goes towards her much needed treatments! Please help if you can :)

Please check out Taylor's Blog:  http://warriordiamond.wordpress.com/ and check out her photos on instagram: taybug522

Some words from Taylor from her Blog:  "Because I have been feeling rather weak and ill it has caused me to withdraw myself from staying actively involved in people’s lives so today I made an effort to contact all my close friends and I hope with snail mail I can keep going on staying in touch. It definitely gets hard when you don’t feel well to keep in touch, but I know being a true friend weighs much more in my heart. I am excited to say that I want to start up a pen pal program with friends, other Lymies, etc. Anyone who is interested basically in sending snail mail back and forth to get to know each other as well as being encouraged through the lifetime. I am excited to figure out how exactly I will create this. I just have such a deep desire to get to know others on a deeper level who are experiencing the same thing I am, and even with people who aren’t going through this disease. I just want to do more with my life and I want to make a difference. I really hope I figure out how to go about this. Creating the name of the program will be the fun part hehe :) Well I am going to go do that so hope everyone has a sound sleep tonight and a blessed day tomorrow! <3 span="">
xoxo Taylor"