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Showing posts from 2013

Wandering Soul-----What Now?

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This song by Rihanna What Now is definately the long year question that I've had on my mind.  As my body heals I feel like I see more clearly now what I want out of my relationships.  At the same time I feel empty and feel like somethings missing.  The words of this song rang true when I heard them.  Somedays I just feel so lost and alone.



I was also watching a movie.  And one character said they felt like a Christmas Tree cut at the core but still alive.  I heard that and just about cried.  Somedays that's exactly how I feel.  Alive but cut off from my roots.

Wandering Soul
Where are you
you were just here laughing
now you leave a trail of tears

Wandering soul
where are you
you were just here talking
now you are silent

Wandering soul
Where are you
you were just here bright and alive
now you are empty

Wandering soul
Where are you
you were just here
now you are gone


Getting Lost

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I went to the store today to grab some groceries.  I kept circling around the store because I couldn't remember where they kept the burrito wraps.  Now I've been in and out of this store for 5 years it's two minutes from my house.  But for the life of me I couldn't remember where half the items were on my list.  So I kept wondering around the store hoping I would remember where things were located reading signs over and over.  This is the perfect definition of what we lymies call Fog Brain.  It comes and goes when you least expect it and its like all of a sudden you are a dementia patient that has broken out of the home for a day.  You start to second guess everything you do because in the back of your mind you are worried you forgot something important and it's embarrassing to admit at any age you just have no recall of things you should know off the top of your head.  It can be beyond embarrassing somedays.  I've also said stupid weird things for no reason li…

Truth of Now

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I feel like I am waiting to wake and be fully alive instead some days I feel like I a drowning.  I start to make strides in my health but instead I watch other people's lives move forward while mine stays stuck between full time on the couch and well enough to lead a full life.  I hate this mediocrity, luke warm, half way living.  It's over rated.  I had all these dreams I wanted to fulfill instead I am watching them fade into the background.  I have never had a career outside being a mom and wife.  I want more but I feel like its just not possible.  I need new dreams at 35 but I am so sick and tired of fighting for just a few inches of ground.  The ups and downs of Lyme living seems to be unseen.  It's a silent suffering we lymies endure.  And it's so hard to explain to others outside of this Lyme green world the depth of pain, despair, set backs, disappointments we go through in minutes, hours, days, weeks, months, years.  The amount of grieving I have gone through t…

Dear Representative

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My name is Angele Rice and I am a Lyme Disease Survivor.  I am writing to you to ask you to continue to support LD 597---which would require doctors in Maine to tell patients that testing is poor and a negative test does not mean you don't have Lyme, as well as require the Maine CDC to put links to patient oriented websites on their website, like the LDA or MaineLyme.org.  For me this legislation is not about those of us who have late stage Lyme Disease already.  But this is an opportunity for us to protect those today and in the future from Late Stage Lyme Disease.  I was bit by a tick at age 13 and diagnosed with Lyme Disease at age 30.  I have been in treatment 5 years.  I would never wish my journey with this chronic illness on anyone.  And if I can protect one person from this personal hell I will gladly do so.  Please help us protect future Mainer's from this disabling stage of Lyme Disease.  Prevention, education and awareness all matter.  But in the end if a person…

World Wide Lyme Disease Protest and Me and Maine

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The letter at the top was from Chellie Pingree in response to my personal story and poem that I sent to her campaign site.  I did get an email response and thought it was over.  Then a few weeks before the May 10 and 11th World Wide Protest I get this letter from her office in the mail.  She left a personal note and I was surprised to see her hand writing but there it was.  It gave me the push I needed to go to the farmer's market and set up my Lyme Awareness table and see what happened.



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World Wide Lyme Disease Protest--Join US!

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My son John 7 at the beach in Maine.

On Facebook a wonderful group is popping up asking for Photo's of those who support and love a person with Lyme Disease.  So Lymies can see those who support them.  If you would like to add your photo please click on this link:  https://www.facebook.com/events/249886701824435/


Please feel free to share these photos around.  This is my cat Bayer and he is my furry nurse.
https://www.facebook.com/pages/Worldwide-Lyme-Protest-US/111527755675190?fref=ts This is the Facebook US Lyme Disease Protest page! Please join us and share your story! I am still collecting photos until the end of April.  Here is my current project.
A US Lyme Disease Awareness Video using photos to represent the faces of Lyme Disease Survivors in the 52 states of the USA. To give voice to those who cannot attend rally's and give a chance for those who don't know about us to get an education they will never forget! I plan to post this video all over FB, Twitter, Yo…

Lyme Disease Awarenes My Way

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This photo I took a few years ago holding my camera in one hand praying I got the right angle.  I have no make up on to cover up the acne scars or tired eyes.  I wanted this picture to tell my truth.  I never thought I would be using to tell my Lyme Disease journey in such a powerful way.  Please feel free to share it around.  It really says in few words so much of what I have dealt with while in treatment over the past 5 years. It tells a truth that words cannot express.




I asked my son to draw what he thought Lyme Disease looked like out of curiosity.  This is what he drew.  I was floored.  He understood way more than I gave him credit for.  No child should have to deal with a sick parent.  And I hope I keep getting better from here so he can have a fully operational mom.  I am so lucky to have a beautiful boy.                                                                                                                                                                      
He is …

I just want a break

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As a Lyme Disease Survivor you would think I would be used to disappointment, let downs, lost friendships, hurt, pain, but the sting of it never wears off each time it happens no matter how hard you try.  It is very real each time.  I honestly don't know how I can look at going back on treatment again thinking it would be a breeze.  I realized oh too quick it was going to kick my ass all over again.  I can lead a somewhat normal life.  At least it "looks" normal, whatever that means.  I feel horrible at night with the air hunger its like an asthma attack back to back.  I have little relief from the feeling.  So any housework or short walks make me feel out of breath like a brick is on my chest that never leaves and I still have to move on doing what I need to do despite it.  It wears on a persons soul having to push through despite feeling physical useless some days.  You know you have the muscles and the endurance but the feeling is over powering.  I that feeling of los…

Survivor's Edge

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As you can tell in my last post I still have my survivor's edge going.  I have to remind myself sometimes I am not in the midst of a huge battle anymore.  Its kinda like post war times right now.  The recovery effort is still in full effect but the war is won.  I need some basic low level Bartonella bacteria killers like Abart which is basically a bunch of herbs in a liquid that put drops of in a cup of water.  In the homeopathic world its called a tincture.  I call it the Bart Killer. LOL.  I need to go back on this treatment and make sure this last strain of bacteria is gone but other than that I took a hula hooping class for the fun of it.  I have a few small bruises to prove it!  It was a blast.  And I am looking into taking belly dancing classes which I would of never done in a million years.  My coordination with Lyme and friends was non existent.  So now I can think straight and not trip over my feet I decided to try something new that's out of the box and a little sex…

Revolution

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Its revolutionary to see myself complete in my incompleteness.  It stops the whole idea of needing something to make myself complete all the time.  I thought I had stopped this compulsion to find wholeness through people, money, things, religion, better health.  It is revolutionary to simply love yourself instead and enjoy the life you've been given.  To reach out for your dreams and run after them.  Its stops the loops of self hatred hard in its tracks.  I've been married now for almost 10 years and as I look back at our evolution I realize that as I change, we change.  I never really had a father super involved in my life.  He was there but his heart was tangled up in pain.  I am still not sure what that is for him.  So when I got married I had a whole in my heart that I thought my husband could fill.  And yes we argued a lot.  On top of all this under current, I had undiagnosed Lyme Disease and eventually on top of that I had a young son who was super energetic.  A few yea…