Sunday, December 22, 2013

Wandering Soul-----What Now?





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


Monday, August 12, 2013

Getting Lost

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 like I just blurt them out and there is no stop button.  Or my poor husband tells me things I just don't remember.  My long term recall is horrible as its is without Lyme Brain.  When the two collide its crazy.  I lost 65$ in movie tickets and I still can't recall a memory of what I did with them.  Not to mention all the other items I loose then find months later.  Either you cry and hate yourself or laugh and make jokes about this stuff.  It does help to swap fog brain stories though.  Sometimes it's hysterical and funny like putting cereal in the freezer or locking yourself out of the house.  Lyme disease really does affect the mind on so many levels in varying degrees.  So if you love a Lymie give them an extra loving hand as best you can.  And lots of understanding and patience.  We may forgot where the cereal box is but we remember kindness.

Sunday, August 11, 2013

Truth of Now

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 the past 5 years is overwhelming.  It blows my mind.  And for sanities sake I have sucked it down, tucked it away, and pushed it away just to survive.  I've done this so much I have found myself numb.  I just want to feel something other than tears and heart ache.  I want new dreams and memories and laugh hard.  I do get times and moments and days that are pretty awesome.  I wish that was everyday.  This is the struggle of every person that suffers with a chronical invisible illness.  And I know I am not alone.  So please hug a Lymie, send your support and love when you can you never know how much it will mean to someone suffering with Lyme Disease.  The simplest things make all the difference.  

Monday, June 3, 2013

Dear Representative

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 bit is given antibiotics right away their chances of full recovery is higher than someone in my shoes.  Thank you for listening to my story and taking the time to reconsider all sides of this complicated topic.
Angele Rice

http://www.maine.gov/legis/senate/ To Find your local representative!

Friday, May 17, 2013

World Wide Lyme Disease Protest and Me and Maine

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.








Wednesday, April 17, 2013

World Wide Lyme Disease Protest--Join US!




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.

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, Youtube, and send it to the larger Lyme organizations so it can reach the widest audience possible. This an opportunity to let our voices be heard through art!  Here is my poster photo please join me!  First name and State I ask for but not needed.  Send to my email: angbet35@gmail.com
I want to be able to represent every state in the United States.  People need to see this is in EVERY STATE not just the North East.


A great video to share about the World Wide Lyme Disease Protest Itself!



Faces of Lyme Patients from Around the World made by my friend Lisa Hilton.

 

Tuesday, March 26, 2013

Lyme Disease Awarenes My Way



 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 only 7 years old and he has a deeper understanding of what I am going through than most adults.  Its amazing what kids understand.  He still asks me if I can eat something and if it has gluten in it.  I have Celiac so he tells me when he thinks I can eat something and offers it to me.  He thought it was a bummer that I couldn't eat his pizza with me or oreo's.  He is very sweet.  He gives me a good reason to fight to be as healthy as possible.  I am grateful for him.











I created my own protest poster today and took a picture of it.  This is not the final photograph but I think this says it all.
I will be collecting similar photos of Lyme Warriors posters through the end of April if you are interested in being in my US Lyme Disease Awareness Video.  My final photo will be of my holding my poster.  That's the type of photograph I hope to collect.  But if you want to take a photo of your poster and send to me please do so!  Please send photographs and your name and place you live to angbet35@gmail.com




http://worldwidelymediseaseprotestus.blogspot.com/
Be a part of the World Wide Protest, Change the World, and help Spread Lyme Disease Awareness around the world in May!


My recent video blog and my feeling and asking you to join the World Wide Lyme Disease Protest.

Saturday, March 23, 2013

I just want a break

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 loss.  It scraps away at my hope.  I just want to get off this treatment and give up.  Pretend everything is okay and move on.  I know I can't do that.  This is the truth of Lyme Disease.  The ugly truth. 
I had dreams like having three kids by now, in a finished house, with my family and friends close.  The longer I am in treatment the longer I feel the isolation Lyme brings.  I do have some friends that are kind and family who care.  I just wish it was like when my grandparents were alive when my Dad's side of the family got together.  Not anymore.  I hate holidays.  The holidays like Easter that my family used to celebrate those traditions are long gone but I still miss those get together's.  I morn them.  Nothing like combining an old Loss with a new one to make your holiday even better.  I get so angry because I can't change the way things are.  I still need to finish out this treatment and I can't force my family to connect with each other again.  Both are out of my hands and it hurts.  I guess I am morning a loss deeper than just Lyme Disease.  Its layers of pain.  And I feel like there is no way around it.  It just keeps welling up inside me. I just want relief.  I'd rather deal with the Lyme than deal with pain of the soul on top of it.  But this is the journey we all face.  Making peace with reality of circumstances is never easy. 

Monday, February 11, 2013

Survivor's Edge


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 sexy too.  Why not you only live once, right...  Well I will have to let you know how that adventure goes.  I did try out a folk dance class.  I did mess up the steps a few times but I was not alone which actually made it even more fun.  We all were laughing at each other.  Its hard to believe I was living on the couch not long ago wishing I had a life and now here I am I am creating a brand new life for myself.  I have always wanted to try out some fun dance classes so here I am.  Getting in touch with my adventurous side.  I still have to watch what I eat and I can get a little cranky when everyone else can eat the crust off a Domino's pizza and I can't have any.  Sorry Gluten free pizza doesn't taste like the regular kind.  Don't believe what anyone tells you, only the real thing tastes good.  Other than that making me feel a little on the outside of things I am a pretty normal stay at home, cat loving, homeschooling, organizing, card making, photographing, cooking up a storm, house wife of Maine.  Yes my life is a regular rock n roll concert :)  At least I can say now when I have a down day or get fatigued which is usually after 5 days of a full schedule I have some pretty great friends that listen and support me.  I have kept my online Facebook Lymies, made new Twitter Occupy friends, and have met some amazing homeschooling families.  Not to mention some of my closest friends are Celiac or on special diets so its super kool to go to a friends house and I can eat anything there.  I really like that.  I even had a friend recently make a full out dinner, drinks, dessert all Gluten Free.  Her brother is Celiac and my first home cooked all GF friendly meal was awesome.  Oh how I loved that night.  I could even eat GF dinner rolls which is a treat and GF cake it was to die for!  I never thought I would meet so many interesting people on this Lyme journey.  So I guess my survivor's edge isn't so bad.  I can get into my I feel like crap, cranky, mean self and I am human it happens.  My neck lymphs still swell sometimes and I have to still be the champion of pill swollower's and make it happen.  I hate big pills but I get it done.  I remember when I gagged at the thought of taking one pill. After Cowden's protocol and Zhang protocol where I was talking herbal, supplements and antibiotics all at the same time I counted one time it was around 30-40 pills a day.  And some liquid tinctures mixed in there.  If I can do that and barely remember my name then a few pills now should be a walk in the park!  I so don't miss those days.  They were not fun at all.  I am very blessed to have made it this far in my health finger's crossed.  I never know if my health will back slide so I am very cautious.  BUT I am glad I have gotten this far.  I just hope it keeps going forward.  And I have lots of personal Angels to thank for getting me here.

Saturday, February 9, 2013

Revolution




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 years later when I was diagnosed with Late Stage Lyme Disease, Bartonella, Babesia, my son was age 3 and he was not your average little kid.  A few years later he was diagnosed with Sensory Processing Disorder.  Everything around me was tugging on me to give.  And I felt empty.

As life raged on, I started to feel like everyone else including my health problems took center stage instead of Angele.  It was like was wasting away inside.  And my body was falling apart and the problems around me financial crunches, a special needs kid, and trying to keep my marriage going seemed impossible.  Its in the midst of all that pain I realized what I never had.  My core, my center was missing something.  I tried out modern religion and that didn't work.  That one friend who didn't care I looked like hell but they burned out over time.  Leaning on my husband to be my everything and he soon burned out as well.  By this time the anger was over the top inside of me spilling out at everyone around me.  I had very little hope this reality would ever change.  I went from Doctor to Doctor trying to find ways to get better while the bills piled up. 

It wasn't until two mile marker moments happened that I started to get somewhere in my health and my growth as a person.  I didn't realize the two were intertwined.  No one gives you a book titled "How to deal with a Chronic Illness".  I wish the heck they did!  The sicker I became the more past hurts, emptiness, and pain I felt internally and physically.  It was a horrid combination.  The continued LOSS from Lyme Disease and later a diagnosis of Celiac Disease mirrored the many Losses I had already suffered in life.  The loss of a relationship with a my father, the loss of many friendships, the loss of being able to work a full time job, the loss of a spark of hope within my self, the loss of making it to the bathroom on time, the loss of my muscle coordination, the loss of financial stability, the loss of feeling useful, valuable, needed, the loss of my sanity.  The first moment came when I finally believed and realized I had Lyme Disease.  I almost didn't believe my first Naturopathic Doctor.  It couldn't be me.  Not me.  I came out of denial into reality.  That step was life shattering for me.  The second was when my acupuncturist asked me as simple question "If you could take all the energy you are putting into getting better, what would you do?".  I realized I was stuck in a victim mindset.  It hurt to hear the truth.

Moving forward this quote has stayed with me.  Now as I start to walk 3 miles a week at the gym, clean my house, and even took a vacation to Quebec City in the middle of winter.  Which by the way most Lymie's would never do because the cold makes me hurt like hell.  In one day I walked 4 miles there and other than a few muscle pains a few days later.  My endurance is back.  Even though I have walked through some pretty horrid days with my health.  My heart still has some healing to do.  I still have days I feel empty, unwanted, unappreciated, ugly, a looser, stupid, the self hatred that followed me during my sick days still follows me now.  NO matter if you are sick, go through loss, you still have to live with the very core of yourself everyday.  You can't get rid of your shadow.  Either you make friends with it or you stay paranoid it will catch up with you in a very bad way.  Making friends with myself while I was sick was beyond hard, now as I heal I realize I can't hide from dealing with how I view myself.  I have to deal with the black hole I dragged around.  No one else can deal with it but me.  The phoenix can't rise from the ashes until the past burns down.  I am embracing the revolution I am going through but it hurts.  I have to acknowledge all the hurts and pains I have carried around with me.  The feelings of abandonment, not worthy, unfair expectations, finding healthier ways to fill my soul.  I am not the same person I was 5 years ago when I started treatment.  And don't get me wrong I am proud of how far I have come so far.  But at this battle with Lyme Disease winds down I need a new banner to pick up and run with.  I am learning that purpose is now loving myself brokeness and all.  I don't need fixing just loving kindness and understanding.  I don't think this revolution is over.  I am sure I will go through many more.  This one is a liberation for me, going from a needy victim to a strong independent woman.  I am maturing into myself.

For those who are curious I am singing more to my favorite songs, volunteer teaching at my sons home school co-op, still making cards for others, volunteering and I want to take guitar and voice lessons.  I am walking at the gym every few days and my goal is to jog a mile before the summer starts.  I am starting to like myself the way I am.   As Whitney said, "The greatest love of all is happening to me.  The greatest love of all is inside of me."