for “outdoor-active-movers and shakers-life loving people”

 

josh and caroline sierra 1-17-2010 hawaii 2

 

 

 

 

 

 

 

Brett Harris, of TheRebelution.com, wrote the best ever awareness article about the prevention, what to do, and follow up resources for Lyme Disease. His wife Ana was a ballerina when Lyme Disease struck her down. Please read this article and share it.

 

“This article is our attempt to spread the word about a devastating disease that has changed our lives. Please help us by sharing this post on Facebook, Twitter, Pinterest, and emailing the link to family and friends. Lyme Disease is a serious and growing threat. We can’t afford to remain unaware.” – Brett Harris

http://therebelution.com/blog/2014/04/how-to-protect-yourself-from-lyme-and-tick-borne-diseases/#.U1_JUf38GYW

 

Life loving people (they are us)…

bunge bay summer table

-4:43 “Your average person that gets Lyme Disease is an outdoor active mover and shaker lover of life type a person, and that’s why they got the disease…”

Thanks to Annette’s Lyme Page on FB! www.facebook.com/corcovado.stars?fref=ts

 

 

visual food…

navarrobeach2012 3I  am going to keep adding to this post because we all need visual food to keep connected with the world around us and how life is amazing…

click on these links to see baby eagles, hawks and mesmerizing waves…

live cam eagles nest http://www.ustream.tv/decoraheagles/pop-out

live cam hawk nest http://www.wired.com/2014/04/red-tailed-hawk-nest-cam/?cid=social_20140428_22831374

live cam blue heron nest http://www.wired.com/2013/05/heron-cam/

raw video of rad waves in tahiti

lasta sateri sheep6

 

 

Interactive Tick-Borne Illness Map | DiscoverMagazine.com

 Interactive Tick-Borne Illness Map | DiscoverMagazine.com.

Plot your zero point where you have gotten bitten and tell a brief story about. Then share this with all of your connections that have lyme or know someone who has lyme. This needs to go viral – to raise awareness about how it is a national problem and the CDC estimate is underestimated.

Click on other red dots and read their stories….

bunge dove

bunge dove

 

Join Me!!!!

the may day project

 

I am going!!!!!

Thrilled to be joining other protestors. My mom has graciously offered to take me. I will be on the East Coast for my mom’s retirement ceremony from Rutgers (yeah, she’s famous in the international science community). This is my first trip flying back East since 2012. I am confident that I can do it – I am going to take it slowly. It is going to be so good to see my family!!!!! And ever since I received the diagnosis of Lyme Disease and TBD, I knew what I wanted to do. To become an advocate for proper, humane, responsible medical treatment and to raise awareness of the gross corruption of the IDSA and the CDC.

This from the site for the protest:

Join Us – May 22nd & 23rd 2014

IDSA Headquarters Arlington, VA

MayDay 2014: This year we will be demanding change. We ask that you strongly consider attending for two days that will bring real change. Bring friends, family, and anyone else that you can grab. We will be hammering the IDSA and CDC from every angle. Not only will we be surrounding the IDSA headquarters in Arlington, VA. right outside of Washington DC, a billboard truck with our demands will be circling the building for two full days. Their social media pages, email addresses, fax machines and phone lines will be flooded, as well as hard copies mailed and hand delivered with our demands and stories. This will happen for two long days. Media coverage will be present to capture this. The full two days will be live streaming the event. Change happens this year, be a part of that change. Come and join us May 22nd and 23rd as we swarm and protest the IDSA. Don’t be on the fence, come out and fight for your life! We need you and your help!
Find out more about the May Day Project here: http://www.themaydayproject.org

Join me!!!!

1557615_10203297156888467_296197146_n

Sometimes happiness happens…

blue berries along the pathSometimes I have to remind myself…

…that I have fought along hard fight to stave off the effects of this illness. Along the way I was mostly happy. Just last night I shared with my husband the sound of my laughter and my voice on these videos that were taken 4 years ago. We were visiting my mom at her summer house in Tilting, Fogo Island, Newfoundland. Although I was sick, I was still able to get around, and I hadn’t lost my voice yet. I love islands, northern islands, coastal California islands, and tropical islands. Fogo Island has a special place in my heart. It welcomed me since I was ten years old. The island is so beautiful – there is no strip malls, movie theaters, and very few restaurants. People are so authentic and warm on the island. I took pleasure in sharing it with my kids…

OLYMPUS DIGITAL CAMERA

Newfie pony foal – Change Islands

I share this with you because sometimes we need smiles and laughter to give ourselves a break…

Joe Batts Arm see-saw, Caroline and Josh

OLYMPUS DIGITAL CAMERA

 

Fogo Island music – Aaron Cobb, Josh, Arielle, Mom and me

1arielle&chester

 

 

humpbacks off of Joe Batts Arm harbor

mom and dick at nicole's_edited-1

I hope I brought a smile to your face, and hopefully brought back lovely memories of your own!

Love to all…

 

Sand Shark….

Sand Shark….

 

Sand Shark!!!

Sand Shark!!!

 

 

 

 

 

 

 

 

 

 

 

I am still here

visby view of the baltic thru wall When my voice left me, the few friends that had stuck by me all those years that I have been sick, started to fade away. I am guessing that they think that it is hard for me to talk on the phone or in person. No girlfriends are calling me up and casually talking about their lives. I was always the one they turned to when they needed a shoulder to lean against. I am still here. I am a great listener. I sometime wonder if I was in their shoes – would I be put off by me? Would I know what to do?

Whenever I see them I know they still love me, only in a different way. I feel like they pity me as a disabled person, and don’t connect with me as one of their peers. I reach out to them and tell them to call me or text me or message me, and I will listen, but they don’t. Perhaps they feel like they don’t want to burden me with their concerns. This disease is so isolating. That is why I am happy to connect with other people who share the similar experiences.

 

I am developing slowly new friends that are fellow journeyers of Lyme Disease. I treasure the visit with my friend Cindi who came over and brought me lunch. I treasure the visit from my friend Melinda who brought her new love to meet me. I treasure the visit I had with my friend Kristine. I always treasure when I see my friend Karen. I treasure Cousin Mike who always supports me. They are the friends that try to stay in touch with me.

IMG_0776A miracle has occurred. My best friend met me when I was I  sick, (not as sick as I am now) and he married me. Treasure your friends that stand by you…

 

 

A note about Rocephin

OLYMPUS DIGITAL CAMERAI met a young mother in the waiting room a the infusion center. It was like looking in the mirror twenty years ago. She was clearly unwell, thin, and upset. She has Lyme Disease. She had to go through the same route practically all of us have to go through – misdiagnosis, refusal to treat. She finally found a neurologist that would treat her two months (!!!) with IV Rocephin. He is not a LLMD and he started her off on straight drip, not timed. She was rushed to the emergency department because she has a “heart event.” She described it as a intense burning in her chest and heart pain. After she gotscan0004 out of the hospital she returned to the infusion center to get 2grams of IV Rocephin over 30 minutes for only two months. I could recognize her look in her eyes that said “this isn’t supposed to happen to me. I’m a young mother and I have to take care of my kids.”

I had the same thing happened to me the first time I went into to get the IV treatment. The nurse stopped the IV treatment and gave me Benadryl, and had an EPI pen on stand by. She phoned my doctor. Fortunately, I have LLMD, and she identified it as an allergy. She prescribed IV 25 mg Benadryl right before the Rocephin drip, and 25mg on stand by. She ordered the  IV Rocephin drip josh in New Jerseyto be 90 minutes long for 2grams. And I have carry Benadryl and an Epi pen always. That did the trick. It is great to have a doctor who knows what they are doing. Unfortunately, my voice wasn’t working that day as I tried to tell her this. She didn’t understand me and she had to go. I thought I would see her again but I never did.

 

 

 

 

 

 

Out Of Touch (Interactive Post!)

I haven’t had any backlash on sharing my blog, but it makes me feel vulnerable.

My Color Is Lyme

Image

Has anyone else found that longs years of illness have left them out of touch with reality? I have been giving this a lot of thought as of late (but not for the first time over the years) how illness leads to isolation and isolation changes how you go about doing things and how you go about doing things changes how you think of things and how you think of things changes your perception…….

I am doing my best to articulate all this but I am not sure I am doing a very good job. I think there is a separation between the chronic illness sufferer and the rest of the world that creeps in over time. It is like a slow ebbing away that you do not notice until it is huge, and you wonder how you got so out of touch. I have observed that is why there…

View original post 303 more words

Neurological Lyme: So You’ve Known Me Your Whole Life And Can’t Recall My Name? Also the Lyme-ALS & MS Connection

My Color Is Lyme is a great blog for information on Lyme…

My Color Is Lyme

Image

Lyme Brain. If you are a Lyme sufferer whether it be chronic, acute or mild, you probably know what this is. It usually involves minor memory lapses, trouble reading and focusing, compromised word recollection, and dyslexia. These symptoms can also be very severe, thankfully I am in the category of the former, and getting much better.

Since the Lyme Spirochete and secondary infections like Bartonella can literally effect anything and everything in your entire body, it makes sense that it can wreak havoc on your brain. I think this aspect of the illness is harder for people to understand; You just end up feeling dumb when you can’t spell words you have known for years, or struggle with simple math problems, and since those around you can’t “see” the disease effecting your mind, it may be hard for the friends, family, and coworkers of Lyme sufferers to understand what is…

View original post 206 more words

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