There can never be too many butterflies!!!

My husband and I enjoyed the other butterflies as equally as we loved the blue butterflies. Each one was mesmerizing. Each one made me….breathe….sigh…wow…then breathe some more.

There is that little bird that I had a conversation with. Is he not the cutest thing EVER!!!!!

After we left the butterflies and birds I wanted to go to Paynes prairie to watch the sunset. It was flooded so we parked on the side of the road for a few minutes until I got to cold when it is not flooded there is a boardwalk that I like to take my scooter out on and look out over the prairie! But I did snap a few shots right on the side of the road. I had my husband driving me EVERYWHERE!

I came home and promptly got warm and in my bed. Poor man still had to go grocery shopping at 7pm on Sunday. So I get to post all of these pictures of our wonderful day.

It could not have been better.

The blue butterflies

Today my husband stopped all of his plans at my whim of “Honey will you take me to the butterflies?” God, I love this man!

For an hour and a half we watched hundreds of butterflies. My favorite I will post in this blog post separate from the others because they were just…EVERYTHING!!! Brace yourselves for the butterfly beauties….

She was on the ground. Hopping like a bunny rabbit. Her wings closed. Looked just like a brown spotted butterfly and then pop those wings opened. I crouched around trying to take her picture. My husband held his arms around my stomach so my legs did not fall as I was leaning over trying to take her picture. She glowed. Ahhhhhhhh. So much beauty.

Just as we were leaving we see this group of butterflies that I THOUGHT were mushrooms. I leaned closer and they were butterflies. They were stunning. All closed up and then a little flutter showed blue. Everyone crowded around my husband and me and this group of butterflies waiting to see if they would open up. One man said he waited 30 minutes for them to open their wings. I just asked! “Please open your wings so I can see the blue.”

While we were there the sweetest child was following me and asked his mom why I was talking to the little bird. Then why I was humming. The child seemed more interested in me humming and talking to the birds than the actual birds and butterflies. I thought that was so special.

Here are the clumps of wonderment!! Oh and they DID open their wings after I asked them to. Coincidence?

Simply magical. I hope you enjoy them as much as I did.

Health record burning ceremony is a brewing!!!!

I just passed my 11 year anniversary of the date of this muscle disease. Weird date to recall. It was the last time I drove more than one mile. I drove to my father’s birthday which is 45 minutes away. On the way home I realized I could barely push the brake. When I got home I could not move. I was seen shortly after at the Mayo clinic. I had already had 5 years of symptoms and 5 years of being bumped from doctor to doctor not knowing what was wrong. When I finally got to the Mayo clinic we knew 2 things. I was only 34 and had severe osteoporosis and I had hyperparathyroidism and had no idea why. After a muscle biopsy I was diagnosed with Central Core Myopathy, a muscle disease. This muscle disease has cored out mitochondria and is accompanied by the RyR1 genetic mutation. They also discovered my copper level was to high and my ferritin level (Iron storage) was too low.

Fast forward 11 years. I have been in over 3 different genetic studies from the NIH to Canada to England and I do not have the RyR1 mutation that causes Central Core Myopathy.

I have continued to have elevated parathyroid which robs the body of calcium literally destroying my bones.

I have continued to have elevated copper with no answers as to why.

I was treated with an iron infusion for the low ferritin but uh oh they poisoned me accidentally and now I have too high ferritin which causes bone pain and a slew of other symptoms. So I did some blood letting only to become anemic but still have too high ferritin.

So copper and ferritin (heavy metals) too high.

Along the way I was diagnosed with Lyme disease and Multiple chemical sensitivities. My t-fighter cells are shot and so my immune system sucks letting all kinds of viruses to take hold.

4 years of treatment for lyme disease and I am no better than I was 4 years ago.

So I have spent the night looking through 11 years of medical records and come to a conclusion… We have spent over $100,000 in testing. Parathyroid scans, nuclear medicine scans, bone scans, MRI’s, lab after lab, Ct scans. Alternative medicine to every extreme you can imagine. 11 years of medical records I am looking through. A foot tall of paper.

Do you know what Im going to do??


I’m going to burn it all!!!!!!!

No one has a fix. No one has an answer. It is not for lack of my Doctor trying. It is not for lack of me getting into medical studies all over the world.

These papers just show what I’ve been told for 16 years now. “ You are just a mystery.”

That mystery is going up in smoke tomorrow.

If I’m to be saved it will need to be without a drawer being taken up with medical records any longer.

I mean really. Look at this. Don’t YOU want to burn it!!!!!!!!!!

SoCS: PSST ( The ceremony)

I discovered photographs taken of me when I was just 18 years old. I had been having nightmares about those photographs leaving me with an ongoing residue.

My mom used the money I had made from a Mcdonald’s commercial when I was 8 to pay for a modeling portfolio.

We had a 3 day photo shoot from the beach, to a pool, to in studio. Finally he photographed me waterskiing.

I had forgotten some of the photographs taken until my nightmare.

He put them on a videotape so we could look at all of the photos and choose when I was 18.

I remember sitting in the living room watching this video thinking “ OH my gosh someone turn this off!!!!” I looked at my mom and waited. I looked like a prostitute. I was posed in over half of the pictures like a porn star with a see through bathing suit. These pictures were NOT modeling portfolio material. I later found this out when I went to a cast call in Orlando. The first person to look at my portfolio said they were all bathing suit photos?!!! Where were the elegant dresses and the professional wear??!! Then telling me my nose was way too large to ever be a model anyway.

At the time these pictures were taken I had just quit my job waterskiing at Seaworld. Sick of sleeping in my car and having health problems arise. I moved back home to the lake. This is also after my suicide attempt and subsequent mental hospital stay. I watched the man who molested me across the lake. In fact, some of the photos taken of me at the lake have his house in the background.

I mean what BETTER way to heal from years of sexual abuse, anorexia, PTSD, and anxiety than to sexualize me in a see through bathing suit and make me look like a whore right?!!! Most of these pictures could be in a porn magazine. It was disgusting. I felt so ashamed. How confusing to feel shame by those photos and have my family feel pride in them.

I wrote a poem with some of the pictures yesterday that I posted but I wanted to add to that by explaining why I burned them and how. The Stream of consciousness Saturday is perfect timing to allow me to just go with what is on my mind right now.

The night after the nightmares of the pictures and what I felt they represented…shame, I got up and immediately went into a dissociative state. I was worried for the first time in a lifetime I would do some sort of self harm. I had no plans. I just felt trauma and I wanted to get rid of it. I went into the the garage and got the loppers and went outside. I started hacking back azalea bushes that I had looked at for years wishing they were manicured. I have no idea how long I was out there. I have no idea what mode my body went into to do this. ( I will tell you that at this moment I feel every muscle in my body has been torn, from my ankles to my shoulders and everything inbetween.)

I looked at the pile of branches later.

I do not know how my body did this.

I don’t recall half of what I was even doing.

It was certainly better than self harm but was I not doing self harm in the end anyway?

I successfully cleared my mind, released anger, but hurt my body immensely.

Trimming bushes and being active is a great way to channel anger and release memories and shame but NOT if you have a muscle disease.

I wish someone would have said “PSSSTTTT um you should probably stop now!!!” But I would not have listened. I was dissociated.

It is quite a pile for someone who uses a wheelchair right?!

The next morning, yesterday, I had time to process, contemplate, put in perspective, what I could not have accomplished by hacking bushes or self harm. Coping mechanisms MUST be safe. They cannot involve harm in any way.

I had to cope with this and do it now. I had to release the shame.

I knew I had to have a ceremony to let go of that girl that everyone wanted me to be, molded me to be, sacrificed me to be.

I took each picture out and looked at it. I put each on the ground perfectly as I wanted them to be. I mourned the part of myself that was not respected and cherished. I mourned the part of myself that was sexualize and not really seen for the suffering at the time. I loved that girl. I loved those parts of me that were never loved and so easily used and discarded. Then I burned the images that someone else created in a sick sick way that did not represent me at all.

I watched them burn.

I took pictures of them burning.

I must say… I feel my OWN pictures of my ceremony were much more artistic than the 5 grand my mother initially spent on having me look how they wanted me to look.

Burning the past was liberating. It was freeing. I know it does not erase the memories. I know that we all have to cope the best we can and we each find what works for us to release what we can. This worked for me. This was my release ceremony. Hey PSST it was AWESOME!!!!