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ONE VOICE

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I have never been more moved by the collaboration of Lyme patients around the world speaking up to get the CDC & Healthcare community to listen to our cries. To see all their faces, young and old suffer the way I do is overwhelming. I have only known I had Chronic Lyme Disease for a few weeks, misdiagnosed for over 22 years. I, like many have suffered almost their entire lives. Diagnosed with one of the 350 diseases that Lyme can mock. I tested positive for Acute & Chronic Lymes Disease and positive by CDC guidelines. Most of the people in this movement have not even had a proper Lyme test done. It enrages me that a simple test could be done and the healthcare community ignores it like it does not exist. How many people have to be infected or die from this debilitating disease before they acknowledge that this disease has reached epidemic levels?I feel like it is now my duty and goal to bring as much awareness as I possibly can. I feel like I have to be heard. I do not wish to let them silence me and many others like me. A dog can get tested and treated for Lyme faster than a human being!! How is that even possible? I have vowed to myself to go to my city officials to be heard, and I encourage everyone who has Lyme or has a friend/loved one to do the same. Do not let them dismiss this anymore! Let us be heard!

I have met more and more people with Lyme since I started this blog and people I am close with. I feel for each and every one of them. I only got a diagnosis because a friend from grade school used her voice to speak out and help me. I am forever grateful for not being silent. She has the same dedication that I do, to make our voices heard. To help bring all the people who suffer with Lyme’s disease together as one very loud voice that can not be ignored anymore.

Please help bring awareness to everyone you know, especially if they are sick. Try to save a life just with information. Below I have compiled everything I could find to help get answers and to bring awareness.

DEADLINE DECEMBER 1, 2013 to submit your picture for awareness campaign
http://lyme300000.wordpress.com/

Testing for Lyme:
http://www.igenex.com/Website/
IGENEX LABS
795 San Antonio Rd
Palo Alto, CA 94303
800.832.3200
650.424.1191
650.424.1196 Fax

Watch the Documentary UNDER OUR SKIN
http://www.youtube.com/watch?v=2JgR_Jfbhv8

Symptom Check List:
http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

Looking for a LLMD:

http://www.lymediseaseassociation.org/index.php/doctors
Also do a google search

Awareness Groups & Blogs:
http://lyme300000.wordpress.com/
http://www.lymediseaseassociation.org/
http://www.flickr.com/groups/lyme300000/pool/page2/
http://www.tiredoflyme.com/
https://www.facebook.com/worldwidelymeprotest
https://www.facebook.com/UNDEROURSKIN
http://www.ilads.org/
http://www.lymemd.org/?gclid=CM_V7ejb-7oCFWUV7AodT2YAwg
http://www.lymeticks.org/chronic
http://lymedisease.org/
http://www.aldf.com/
http://www.lymenet.org/

http://prayingforlymies.blogspot.com/
http://www.mommalyme.com/2011/06/amazing-day.html
http://www.mylymesymphony.com/
http://www.lymewarrior.org/get_involved.htmlCenter for Disease Control:
http://www.cdc.gov/lyme/

My personal Blogs & Friends:
http://rocasvida.com/
https://mandoraswords.wordpress.com/
http://phoenixrising.me/archives/20283 ( My friend Kim’s published article in Phoeniex Rising)
http://mandaswords.weebly.com/

Twitter Hashtags:
#lymedisease
#lymies
#Spoonies
#lymieshelpinglymies
#Lymebloggers
#noonefightsalone

What Makes A Woman Sexy?

JamesMSama.com

The word “sexy” in modern day society has often become synonymous with the matched drum-beats and stiletto steps we’re used to seeing in Victoria’s Secret advertisements. Don’t get me wrong…that is sexy, but it’s not the only thing that is.

So, be honest…how many of you clicked on this article expecting to see a list consisting of amazing legs, abs, fake boobs, and a tan?

What society tells you is sexy on the surface, is often a small piece of the whole puzzle, if it’s a piece of it at all. But the first thing we need to do, is get rid of this damaging perception.

sexy1

So, for those of us who live in the real world, what makes a woman sexy?

Confidence is key. Being perfect, is not. A strong, purposeful walk, head held high, eye contact, and a smile – go a long way.

Confidence breeds more…

View original post 433 more words

On Russell Brand’s Revolution

Russell Brand delivers once again, a good read! You don’t have to believe what he says but it sure gets you thinking 🙂

The Urchins

russell brand new statesman coverIn this edition of Urchins Take Sides, we discuss Russell Brand’s essay on revolution in the latest edition of the New Statesman. Please feel free to take a side in the comment section below. 

By Margaret Hedderman

I must say, I can’t remember the last time I’ve been so happy to be proven wrong about someone. In his forceful, urgent, and absurdly funny essay, Russell Brand has succinctly pinpointed the necessary means to drive the next revolution. It is unbelievably refreshing to read a commentary about politics and the environment that speaks to the true nature of the problem: if we don’t do something, we’re going to make this planet unlivable.

Unfortunately, the people who need to read, comprehend, and apply Brand’s words of revolutionary wisdom, probably won’t. I’m going to guess that most of them have never heard of the New Statesman, and if they have, probably…

View original post 460 more words

Bucket List

 

Treatment

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Well it has been over a week on treatment and I am doing fairly well with the meds. I have started to loose the swelling all over my body and my stomach is on the mend from the inside. Friday-Sunday are my weakest days all because of one antibiotic I take only on the weekends (Flagyl). 


I started a new round of Flagyl today so we will see if this round goes like the last one or intensifies symptoms. It has been difficult to write on my blog as my brain is just not up to par for putting my thoughts to words.

My spirit is still hopeful and I know I have a long way to go but I am optimistic that it will all be for the better in the end!

I came across this today on Yolanda Foster from the Real Housewives of Beverly Hills. She also has chronic lyme’s disease.

http://radaronline.com/exclusives/2013/11/yolanda-foster-real-housewives-beverly-hills-blog-lyme-disease-struggles-shell-woman-used-to-be/
http://radaronline.com/exclusives/2013/04/yolanda-foster-lyme-disease-video/
http://radaronline.com/exclusives/2013/01/yolanda-foster-lyme-disease-real-housewives-of-beverly-hills-video/

http://mandaswords.weebly.com/1/post/2013/11/treatment.html

 

 

A New Dawn…A New Day

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My journey to answers started years ago, but until recently it brought on a whole new meaning. I have listened to so much negativity throughout the years about my health and my sanity and it has taken its toll on me. The decision to pay for specialized testing through Igenex labs was a tough decision for me. All my fears surfaced on whether or not it was all in my head or the real thing. Years of people planting the seeds of doubt got to me. I knew deep down though I was not crazy; that what was happening to me was real, all of it was real. 


So now I take you through the last few days that has forever changed my life.

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Wednesday morning my friend Jenna and I set out to see the LLMD doctor that I have been waiting months to see and and a long lost friend. We talked for hours about all that had been happening to me and how people have treated me along the way. I was filled with anxiety. I had so many emotions running through my body it is almost indescribable.  I was scared of what was coming and the anxiety just built up till we arrived. I had my moments of doubt on whether or not this was going to give me the answers that I was searching for and Jenna tried her best to ease my mind but I think she was just as anxious as I was.

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We finally made into town and arrived at the hotel. My long lost friend Kim came out to meet us. I also met Kim’s friend Vee for the first time. Kim has been in my life for a long time but we lost touch after high school when life took us in different directions. Just a few months ago we found each other again on Facebook. This would turn out to be a pivotal change in both of our lives. She was diagnosed with Chronic Lyme’s Disease and had posted a video about it. We had talked forever about what I was going through and she suggested I watch. I watched the documentary with tears in my eyes the entire time. This was a story of me. Kim and I were convinced that I to had Chronic Lyme’s Disease. Kim helped me through the next couple of months of preparing to see the LLMD doctor that she was seeing and to get the proper testing to diagnose it. I followed her steps and it led me to this day.

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We all piled in the car Jenna, Kim, Vee and myself and off we went. After arriving at the doctor emotions were running high. We talked about the good ole days and tried to stay distracted until they called my name…it was time.  Jenna and Kim accompanied me to see the doctor. We sat anxiously awaiting my test results. The doctor was reading my results and paused to utter the words “Jesus”, he told us that it was the most positive test result he has ever seen. Kim was crying and I was in shock. Kim had to keep repeating it to me, telling me that not only was I positive by Igenex criteria but also by the strict guidelines of the CDC. When it finally hit me I just broke down and Kim and Jenna rushed to my side to hold me. It was a beautiful life changing moment. He expressed that I was very ill and he was going to help me get better and that I have had it since I was a child. Funny that two girls from a small town in Texas end up with the same disease. 

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My mind was racing with so many emotions that I was mentally exhausted. I could not believe that after all these years I finally had an answer to everything. I have been through so much pain and agony my whole life but it has made me strong and very tolerant to pain. I have listened to all kinds of doctors over the years tell me that I was crazy or making it all up, I even heard this from the people closest to me. I can’t even begin to tell you how soul crushing that is. To have a doctor not believe you is one thing, but to have your family not believe you is another thing all together. I finally made the choice to just be my own self advocate on my health. When I connected with Kim she brought me hope and peace of mind that no matter what she believed me and was willing to help me. It takes a beautiful soul to give someone help when they in return are in just as much pain.  All of this made me realize that I needed to move on from all the negativity in my life and start anew.  

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The girls and I headed out for some grub at a little Mexican restaurant. We sat in a booth for four and talked. Vee had struck up a conversation with an older man sitting across the way from us. He dressed in faded overalls, moss green crocs and a crooked camo cap. He was alone and unmarried, quietly eating his dinner. He obviously was a regular because even the manager knew his name. This man that I will call “R” spoke to us about respect for women and how always to be kind to them. He made my heart smile, surprisingly gentle and kind even with the rough exterior. When we were ready for the check the waitress came and told us that our meal had been “taken care of”. We were shocked and asked by who. Even though the waitress never really said we knew who it was. The kind man “R” had picked up the tab for us. We were very grateful for his generosity and spent some time chatting with him. What a kindness “R” had showed us and we promised to pay it forward.

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We headed back to the hotel to reflect on the day and unwind. I couldn’t have asked for a better group of girls to help me through one of the hardest and joyous days of my life. We laughed, we cried and we goofed off big time! From dog piles to rapping in the parking lot we had an awesome night letting loose. Vee had us cracking up with her toilet paper mask that Jenna made her and her talent for rapping. Jenna graced us with her best dance moves and Kim with her beats. These ladies are infected with kindness and laughter.

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The next morning was a somber one. It was time to head home. We decided to get some breakfast at Cracker Barrel and part ways. We talked over breakfast and then hit the gift store. Everyone knows you can’t go to Cracker Barrel without visiting the store! With our last hugs goodbye we parted till next time.  Jenna and I spent the rest of the trip home listening to music from Griffin House and enjoying the beauty of the drive.

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In these short few days my life has changed dramatically. I not only found the root cause of all the things that I have experienced throughout my life but made some life altering decisions for myself. I learned in this brief period of time that life is to short and I do not want to be surrounded by people that do not make me happy and people who do not have my back. The betrayal I have felt has not left me bitter but more aware of people’s true colors. I have learned the hard way and now I can move on with my life in a more positive way. Knowing what I will have to go through brings me comfort that I have great friends by my side. 

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Letter to Kim:

Kim,

You have been such an inspiration to me. You reached out to me in my most desperate of hours. You helped me find the strength to march on in my journey for answers. Your kind and motivating words touched my heart and soul. You encouraged me with your own story of struggles to take the leap faith. I know that I have reconnected with a life long friend. Words can not due justice to the way you have changed me. I will be forever grateful for your support and honest words. I will always be here for you for anything that may come your way. I believe in you and God will bless you for you have paid it forward in one of the biggest ways possible. You are my friend and always will be.

Love

Amanda


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Answers & Actions

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The time has come for answers and actions in my life. So many things have been crashing down around me that I feel as though I am drowning. 

I started on this journey seeking the answers to my health and my future. I have worked hard to get to where I am now and there is no turning back. I always knew this would not be easy to overcome but I have to try. All the changes that have been happening to me over the last year has halted my happiness. I have not been able to do all the things I love due to the way I have felt. It has all been slowly taken away. I still have fairly good days where I can go out and enjoy the sunshine with the kiddos or a good day of fishing but its not without pain, just tolerable. It means I wake up every morning and my pain level is either tolerable or not tolerable, end of story. It is what is and right now I can not change what is happening to me, but I am trying to.

In the midst of all of this some things have happened that I wish I did not have to endure. I wish I didn’t see what I did. I wish that I did not have to face the truth that I am faced with now. It is right in my face taunting me to do something about it for so long but now it has all been exposed and there is no turning back now. 


What I saw was people turning their backs on me, telling me I am faking, over exaggerating my illness because I am lazy or I wanted the attention. It is utterly mind blowing to me how these people claim to know me but really know nothing about me. It has been the hardest thing out of all of this to deal with. I have seen their true colors and it has crushed me. The people in my life that are supposed to be there for me no matter what and to have my back, hold my hand and help me through all this, just shut me out. I have never been more devastated by such heartless and cold acts. 


I have always been there for these people and would gladly take a bullet for any one of them. It is obvious to me now that these feelings are not mutual. Some are not as cruel but just as skeptical in saying they need “proof” that I am ill. I am sorry that I do not look the part that makes it easier for you to accept that I am sick. Having an invisible illness that only rears its ugly head to the outside of me on occasion is very frustrating when I have to deal with ignorant and non-supportive people in my life. I never thought that I would have to “prove” anything to anyone that is close to me and that knows me, but I was greatly mistaken. 

Due to this overwhelming experience and other personal issues, I have decided to make some big changes in my life. I am getting rid of all the negative and all the drama. I no longer need to be surrounded by people who do not love or care for me the way that I do them. I no longer want to spend my days walking on egg shells around these people and pretending to be ok with the way they are treating me. I am not a doormat, do not take me for granted and do not mistake my kindness for weakness!  I have learned a harsh lesson about love, trust and respect and it is one I learned the hard way. 

So it is time for action! Out with the old and in with the new, onward I march! A new me is emerging from all this pain, a stronger, smarter me. I have grieved, been angry and now I am determined to change my life around. 

So, tomorrow I embark on my journey to see the LLMD and meet up with a long lost friend. She has been helping me every step of the way and I can not thank her enough. She is a rock battling her own battles but still finds the time to help me get through it to. God has blessed me by putting us back in touch with her. Together, her and I will move mountains! I am so excited and terrified all at the same time for so many reasons. This is going to be a long tough journey for me but the outcome will make it all worthwhile and y’all will have a front roll seat!

See y’all on the other side!

PS: I do want to thank all my precious friends that have been there for me every step of the way and who have helped me through every rough day I have encountered. They are all God sent and I love them all. Y’all know who you are! 😉