Sunday, September 14, 2014

Truth Out


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.  Lyme disease exposes our deepest darkest pain and weaknesses.  It amplifies them at times when you least expect it.  It steals away what little self esteem and confidence I have.  I feel like I have to fight to rebuild everyday.  It's hard to explain that to someone who sees you and thinks you look fine.  I understand people can't see all of the burdens I carry around with me. Sometimes I hide behind that wall praying no one will notice.  Then there are days you wish someone would rescue from your internal torment, hug you and tell you, you are valuable especially on the days when it's hardest to convience yourself of that.  I have always struggled with how I look to others.  Now I hate how I look in general. It's hard to like a body that is full of daily aches and pains.  What is hard is moving beyond the self hatred and starting to love yourself scars and mess and all.  I made the mistake a long time ago to love and take care of everyone else.  I forgot to love myself.  It's time I started learning how to on a new level.

Tuesday, August 19, 2014

What do I say now?


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 my good days I start to explore what that means to me.  I think what I am needing is new experiences that have never had before I've always been a constant learner.  I know Lyme disease will be there in the back room somewhere no matter what I do but I don't want it to define all of me.  It's time for me to open up the doors and walk through them.  Instead of staring at the door handle.  I need new fun memories filled with all that I love my family my son my cats photography art music.  I want a life that spills over into the lives of others in a positive way.  It's time for me to discover how to do that.  Now is the time to move forward no matter what lyme disease does in my life.  I can keep waiting for the other shoe to drop or I can just focus on living to the fullest the best I can.  


 

Sunday, June 15, 2014

Ways to Get Help




 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 application form on the left of the screen.
Help With Medicine Costs
http://www.needymeds.org/
Fundraiser Help
Providing Patients Access to the Medicines They Need
http://www.bridgestoaccess.com/
Following Info Provided by Shanna Yule, thank you Shanna for putting this together for us!
Bridges To Access
http://www.bridgestoaccess.com/
The GSK program providing low cost or no cost medications for non-medicare patients or for people who do not have prescription coverage. It is a great program for Malarone and Mepron.
ClinicalTrials.gov
ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. Use the search tool, there seem to be a few trials recruiting for Lyme Disease patients.
http://clinicaltrials.gov
Clinic Of Angels
The Clinic of Angels is a 501(c) 3 non-profit organization founded in 2005 by Michael Cichon MD. Dr. Cichon, a board certified Internal Medicine and Infectious Disease physician has practiced in the Tampa Bay area for over 30 years. His purpose in starting this organization was to help chronically ill patients by providing financial resources to help in their medical care.
http://www.clinicofangels.org/
http://www.clinicofangels.org/Clinic%20of%20Angels%20Application%20for%20Services%20with%20income%20chart%20New%20(2).pdf (application form)
Co-Payment Programs
Co-pay programs provide financial assistance for certain health care costs to patients who qualify financially and medically.
Discount for Condensed Cowden Support Program via Nutramedix -
http://www.pparx.org/en/prescription_assistance_programs/co-payment_programs
http://www.nutramedix.com/company.asp
http://www.nutramedix.com/contact-us.asp (phone numbers)
The Nutramedix company more than a year ago offered for a while, free Condensed Cowden Support Programs (CCSP) to select Lyme patients. Nutramedix no longer offers that but if someone with severe Lyme disease &/or co-infections wants to go on the CCSP but can’t afford it, they can contact Nutramedix to discuss their financial situation & request a discount based on financial need.
Discount Drug Card Programs
http://www.pparx.org/en/prescription_assistance_programs/discount_cards
A list of many state and other “savings card” programs to help with cost of medications.
GSK-Access
http://www.gsk-access.com/index.html (home page)
http://www.gsk-access.com/medicines/medicine-list.html (list of medicines)
GSK Access is a GlaxoSmithKline patient assistance program. It provides GSK prescription medicines—at no charge—to qualified patients who are enrolled in a Medicare Part D Prescription Drug Plan.
L.E.A.P. – Financial Assistance Program
http://www.leaparizona.com/financialassistance.htm
There is very little financial assistance available for children and adults suffering with Lyme disease. We at L.E.A.P. are attempting to raise funds for this very purpose for patients in Arizona and across the United States. Our program consists of a financial assistance application which is confidentially reviewed and verified during the approval process. When patients are approved for assistance, all funds disbursed on their behalf are sent directly to their providers/creditors after insurance payments and balance verification. We make sure that grants and donors’ contributions are used appropriately.
In addition, L.E.A.P. has a partnership with Amazon.com. Amazon makes a donation to L.E.A.P each and every time a purchase is made using this link: http://www.amazon.com/?&tag=lymeeducation-20&camp=15345&creative=331689&linkCode=ur1&adid=06609TZGXCZ7F7YH5GDM& Pass this on!
Lyme Aid 4Kids
http://www.needymeds.org/co_pay_program.taf?_function=detail&program_id=268 (overview/contact info)
http://www.LymeDiseaseAssociation.org/index.php?option=com_content&view=article&id=592&Itemid=38 (application)
The LymeAid 4 Kids (LA4K) fund began in 2004 and has helped children all over the U.S. and in Canada. Developed with the help of author Amy Tan, the fund is for children who do not have/receive insurance coverage for Lyme disease treatment for children and have economic difficulties. Donations can be made on-line to LDA help this LA4K fund as there are so many applicants, the fund does run out of money frequently.
Help With Pet Bills
http://www.rescuinganimalsinneed.org/financial_help.htm
Modest Needs
http://www.modestneeds.org/explore/
http://www.modestneeds.org/intro/
Modest Needs offers three main types of grants: Self-Sufficiency Grants, Back-to-Work Grants, and Independent Living Grants. The grants we offer at Modest Needs come with no strings attached and do not ever have to be repaid.
Modest Needs’ grant programs are designed PRIMARILY to assist individuals and families who generally are able to pay their monthly bills with no help from anyone, who don’t qualify for conventional types of social or charitable assistance, and who are facing a financial crisis because they’ve encountered a single, unexpected expense they just can’t afford on their own.
Of course, we also offer grants that are designed to assist people who are in the process of returning to work, persons who need help to afford accessibility equipment, and small non-profit organizations. But, in general, Modest Needs just does not have the resources to assist individuals or families who are homeless, have no regular income of their own, or need / receive ongoing help to afford the basics.
Partnership for Prescription Assistance
http://www.pparx.org/
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free. The Partnership for Prescription Assistance will help you find the program that’s right for you, free of charge. Remember,you will never be asked for money by a PPA Call Center representative, or on this Web site.
Needy Meds
http://www.needymeds.org/resourcepages/lyme%20disease.htm
This is a Patient Assistance Programs (PAPs). Programs offered by pharmaceutical companies to help those most in need gain access to their medications at no or low cost. Each program has varying financial and insurance guidelines – when in doubt, call the program. To find the specific PAP information for a specific drug click on the list (on web page). You will then be taken to a listing of all the programs available for that medication.
http://www.needymeds.org/free_clinics.taf
This webpage, also part of Needy Meds, is specifically for those without insurance or unable to pay for a visit with a physician, NeedyMeds has compiled a nationwide list of free, low cost, and sliding scale clinics. *Granted these are not LLMD’s specifically, probably mostly Family Practitioners, Infectious Disease, etc, basically doctors that have general knowledge about Lyme.
Patient Advocate Foundation (Co-Pay Relief)
http://www.copays.org/
The Patient Advocate Foundation (PAF) Co-Pay Relief Program (CPR) currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who must financially and medically qualify to access pharmaceutical co-payment assistance. The program offers personal service to all patients through the use of call counselors; personally guiding patients through the enrollment process.
Prescription Hope
http://www.prescriptionhope.com/
A program helping people get prescriptions at a much lower price. So if you are taking antibiotics, iv’s, etc, they could be a great resource to look into. From their website “We assist individuals who need to take prescription medications, yet lack the income to afford the monthly expense. Since our founding in 2001 we have assisted thousands of uninsured and underinsured individuals throughout the United States in obtaining prescriptions directly from the manufacturer.”
RxAssist
http://www.rxassist.org/
Information about free medications. Find information about free and low cost medicine programs and other ways to manage your medication costs. Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs.
Rx Hope
https://www.rxhope.com/
RxHope is exactly what its name implies…a helping hand to people in need in obtaining critical medications that they would normally have trouble affording. We act as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help.
Wish Upon A Hero
http://www.wishuponahero.com
Wish Upon A Hero is a website that brings together people to help grant wishes big and small. No wish is too large, no hero is too small.
Sponsor a child for their birthday
https://www.facebook.com/pages/Sponsor-a-child-for-their-birthday/345163365521900
Financial Assistance for Lyme Disease Patients
http://lyme.kaiserpapers.org/financial-assistance.html

Go Fund Me is another great way to raise funds for yourself and let people see where their donations are going.
http://www.gofundme.com/

You could hold an online Auction of handmade items, donated items, or items of your own that you are selling on 32Auctions.
http://www.32auctions.com/

Ways to get help if you live in the USA
http://www.usa.gov/citizen/topics/family/help-for-difficult-financial-times.shtml

http://www.benefits.gov/

If you have a Go Fund Me page or something similar please message me and I will do what I can to help your page get some views and traffic!

Wednesday, May 28, 2014

Taking Flight




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 rest forever watching life pass me by.  I am ready to be apart of the land of the living.  If that means more traveling adventures, activism, or taking classes I have no idea.  But it's freeing to see the possibilities before you.  And simply being open to them.  Instead of saying all the time I'm too sick to do that.  Am I really too sick or too scared?  I feel like I am flirting with a chance for a more normal existence.  To grow from life's possibilities.  Instead of feeling limited by them.  Recovering from Lyme Disease is a long term, life long journey with it's daily ups and downs. 


Friday, April 4, 2014

USA Protest 2014 IDSA Headquarters

 http://www.themaydayproject.org/

 "The Mayday Project will be holding a large protest at the IDSA
headquarters in Arlington, VA. on May 22-23, 2014. Please plan to attend
and fight for the rights of those suffering with Lyme
disease. This year change will happen! Change starts with you!"


Washington DC Lyme Disease Protest 2013
 I walked around the protest last year and took photos.  I couldn't stand still I was so nervous.  But as I moved around I realized I knew so many faces!  I had met a lot of people online and now I was connecting those facebook friends with real live people!  It was crazy!  There was around 250 people for this portion of the rally.  It blew by mind that, that many people showed up.  It was like a reunion of sorts.
 I was reading the different signs people made and realized that each one was unique and different.  We all had something important to say in our own ways.  But the theme was the same that day.  We all wanted to see change!
Even people walking by us were curious what we were about.  And when they stopped we handed out fliers and talked to people.  If someone seemed like they were not feeling okay a person would get an extra wheel chair for them.  Or pass out waters to make sure everyone had fluids.  We were aware of each others needs and understood each other right away.  It was likely a big Lymie party!
 As people began to speak, the mood was somewhat somber but once in a while you would hear people chanting different things like "We need change".  Speakers were talking about their own life stories and experiences but they were also talking for all of us. And we showed our support. 
 I was impressed by everyone's passion and determination in unison to bring about a change in a world that did not recognize Lyme Disease.  There was a lot of green clothes, signs, bracelets, even some dogs wore green.  I was impressed by family members, loved ones, and friends who also joined us wearing green and ready to do what they could to help us get our message out to the public.




 I think the thing that impressed me the most was everyone was in this together.  We all understood that.  It wasn't about who did what.  It was about we all brought to the table what we could to make a difference the best way we knew how.



 I really like the graphics on some of the signs because they really sent a strong message. 






These signs below broke my heart.  I understood the pain behind those words.  It reminded me the impact that Lyme Disease has on all of us.  I thought these signs were needed to show the public the depth of our hurt and pain. 

 



To know more details about this rally and protest this May 2014 please visit their facebook page
https://www.facebook.com/TheMaydayProject.org?fref=ts
Or Facebook Event Page:  
https://www.facebook.com/events/1421817074719323/?fref=ts
Here is a great carpool page for those who gotta travel to go!
https://www.facebook.com/events/652280861484823/?fref=ts
A great Flier to invite people to this event:
https://docs.google.com/file//0B-TGfEh0LoudbzBPN0RyWXkxLU0/edit




I personally went to last years protest and I had a blast meeting my online Lymie friends, spreading awareness, and networking.  Its really like a rally, protest and festival all rolled into one!!!








We had several speakers at the rally last year.  And Kermit the frog gave them support.  It was cool hearing different advocates, doctors, and activists not only talk about their personal stories but how they took that journey and used it to help others in their own ways.







There was 250 people at the rally portion of the day


Our first group picture of the day with the most amount of people





After lunch at the food trucks we had a die in group photo taken and then we began our march 150 of us, around the white house.  The walked a couple of miles.  We had a lot of people take pictures of us and video the whole way.  It was the first time was a part of a protest ever in my life.  It was strange having people stop to take pictures of what we were doing.  We just kept chanting the whole way!  "When will you see there is chronic Lyme Disease"  We had one person in front on the mega phone and in different sections in the long line different people took turns chanting loud and proud!  We carried our signs and just kept going!


At the end of the day we were all tired but it was worth the walk!





Please watch the Mayday's Faces of Lyme Video 2014 !!!!


Thursday, April 3, 2014

Passion is the Fuel






"passion is the fuel 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 qualities are more important than any other ones.  

But as I reflect on where I am now I realize I am in a different place than where I started over 5 years ago.  My experiences as a Lyme Disease patient has shaped my heart, soul, mind and spirit.  And there is no going back.  I cannot help but want to help others with Lyme Disease not because I have all the answers although I wished I did.  But because its an overwhelming internal passion.  Its a passion that fuels me to keep going.  I cannot pass by a post on facebook that says someone is having a bad day, loosing hope, or feeling alone.  I have felt those feelings many many many times.  I just want other's to know they are not alone just like someone did for me so many times before.  To Pay It Forward.  I truly believe in my heart of hearts that what goes around comes around.  For every action there is an opposite and equal reaction.  If you send out anger, resentment, and hate that's what you will get in return.  If you send out humble, free love with no strings is always comes back.  

Even at my sickest giving to someone else has pulled me through the darkest days.  And there are times I've helped someone out and nothing happened in return for months.  But when I least expected it a kindness always came my way.  I can't explain why the world works this way.  Why our universe seems to be based on these invisible principles.  I never thought just breathing and laying on a couch fighting for my health was a protest and valiant thing on its own.  That those simple actions were heroic and powerful as much as someone holding a protest sign on a corner.

  I used to minimize the power of photographs, poetry and words.  I have stopped doing that now.  I realize our very breathe has meaning, power, and contributes to the very energy all around us.  I heard so many times while I was sick I was valuable even sick as hell.  I thought Okay? How is that exactly?  I didn't realize just pushing forward inch my inch as best as I could was a story of hope for someone else out there.  But its not just my story that matters.  All of our journey's and stories matter.  Good or bad.  I used to think my very presence in this world never mattered and no one would care if I left.  Be careful what you minimize.  You never know the impact you are making until you can see yourself and circumstances from a different view point.  

Perspective is everything.  Its taken me years to see more and more how each life has an impact and power.  We forget how powerful we human beings are in the midst of so much pain and hurt and destruction.  We have no idea what those moments will bring out in us and the long term impact they may have on own very souls.  Please don't minimize your awesome tragic beauty.  Your struggle through Lyme Disease might be carving you into something greater than where you started.  And you never know what the impact of that will be.  My journey has made me a passionate advocate and activist.  I'm still a human being.  I still wait some days wondering how long a stretch of good health will last.  But I find as I heal I am more focused on living everyday to the best of my ability.  

My perspective has widened and I see now the ways I can help.  I also learning boundaries with it.  Having times where Lyme Disease is set to the side so I can join the joys of living.  I feel like the Lion within me is tamed.  He tries to come back and bite me but I know how to put him in his place.  The whole process of my healing is not perfect and I still need some level of treatment and medical support.  But my heart and soul are free.  They are no longer run by an illness.  I plan to keep it that and I plan to rebuild myself and love myself one day at a time.  



“I can do things you cannot, you can do things I cannot; together we can do great things.”

Mother Theresa

 

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"