Archive | January 2016

3 years on land…

Jan30

January 28th 2013, 1:00 pm:

I had just finished eating lunch at work, sat up to clock back in and became very confused. Did I spill my drink? Pee my pants? If it was pee, why wasn’t it stopping? I probably owe a lot of people an apology for my behavior the next hour or so, I was completely irrational, I know this, but that will come later, another day, in a different form, I promise. What matters today, is that moment, is where our journey together really began. I wasn’t due for quite some time so it was all so unexpected. I suppose you were ready, though you took your sweet time joining us here on land. Roughly 36 hours that is. 36 long, painful, life altering hours.

They say the memory of labor fades away, I beg to differ, My experience of bringing you into this world will never be forgotten, but I forgive you. You see, I knew our lives were changed forever the minute you joined us, but I had no idea just how… until now.

I now know that in your 3 short years in life you have changed almost every ounce of my being. For the better.

In your short but eventful life have seen the oceans and stood in the sands from the Washington coast line all the way down to California. You have ventured the strip in Vegas, held a baby tiger, been a local celebrity on the news, met a celebrity, rode the teacups in Disneyland, peered at the land below aside the pilot in a cockpit of a plane, been diagnosed with a rare disease, gazed at the redwoods, rode a gondola for miles in Idaho and laughed at your brothers fear at the top of a ferris wheel. You have been the best little adventure seeker I could ever ask for.

It means the world to me that you can stand by our side throughout our travels, but what you have given me that has changed me, is your heart.

When Derek Jeter played his last game for the New York Yankees, a story and game you would only believe was made for the big screen; and I sat there in disbelief crying, you climbed upon my lap and wiped away my tears. Reminding me how to be compassionate.

When I was ill and crumpled in the kitchen in pain, you rubbed my back and told me it would be ok. Reminding me how to be kind.

When you had a biopsy and were pinned to a table with all the adults fearful of how it would go, you remained calm, still and quiet. Showing a strength none of us could believe. Reminding me how to be brave.

When your slowly falling asleep and ask me to sing twinkle twinkle again in your softest voice as you fade away into dreamland, I am reminded to savor small moments.

When you made a necklace at school that consisted of a string and one tiny bead that you could not wait to show me, then said it was for me; I was reminded of how to be generous.

When you learned a new “trick move” and showed me repeatedly while dancing in our living room to Aerosmith, I was reminded of how to be happy.

Being an adult is hard. We get sucked into our daily routine of mundane tasks and often forget to take time to practice all these things. We focus on the negative, whether we want to or not and become overwhelmed. I am the biggest offender of this, the daily grind often plagues me and before you, probably consumed me. Your small stature but huge spirit has granted me the opportunity to remember on a daily basis to be compassionate, kind, brave, generous, happy and to savor the small moments.

It’s because of you that I rediscovered my love of writing and began using that tool to share our crazy, sad, happy, frustrating, amazing journey with others.

You were dealt a tougher deck than others in your disease, which we are still searching to truly understand and manage and though I know you do not realize it now, it is because of who you have been in these 3 short years that I will forever be compassionate to others with differences, kind to those who join our journey, brave enough to publically share all our emotions and steps on this walk, generous enough to share our knowledge and products, happy for those who do not walk in our shoes and forever savor every small notion we receive along the way.

Today is a special day, for today is the day you made your mark on this world.

My Mermaid, I love you to the deep end of the seas and back.

Happy Birthday.

Mermaid’s Mommy

We are fighting with you!

Jan27

It is with a heavy heart that I share this blog and information.

I learned today of a long time acquaintance’s diagnoses of cancer. Michelle and I have had mutual friends for many years and I know how heavily this is weighing on everyone close to her. Michelle is a young vibrant soul and I can guarantee she is full of fight.

The home page reads:

On Wednesday, January 13th, after advisement from trusted friend Ariane in the most gentle and understated tone possible (Michelle you look like shit), Michelle went to the ER. Michelle had been having various medical complaints, coupled with unexplained weight loss. After an exam, bloodwork, and a CT scan, Michelle was diagnosed with cancer. This blog will serve as a record of her treatment progress, medical updates and general “how is she doing” reports.

The blog houses a link to donate to either Michelle and her family or to cancer research.

http://www.hanzownscancer.com/

Michelle – Kick cancers ass, we are rooting for you!

hanson-family

Thanks for walking with us today,

Mermaid’s Mommy

Scrub a dub dub…

Jan27

A good body scrub can be spendy; and let’s face it – if your like me, you might treat yourself only to use the product once, forget you have it, and find it months later when it’s all dried up and useless. Sunday afternoon we were longing for a soothing bath time treatment and decided to make our own.

Here’s what we were working with: Some Lavender body oil, Epsom salt with lavender, Sea Salt and pure Coconut oil.

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  The health benefits of sea salt and coconut oil in the beauty department are endless, we have discussed some of these in past posts but always separately. We have yet to combine the two for a single treatment. Add in the Lavender oil and Epsom salt and it’s sure to be just the small little wonder we were looking for.

Let’s talk about some of the benefits of these 4 products.
  • Sea salt can help push all toxins out of your body, the skin becomes soft and healthy. It has been seen that regular sea salt baths can enhance the skin tone to a large extent. The magnesium present in the salt can prevent the retention of fluid from your skin keeping it supple, firm and youthful.
  • Sea salt is full of vital vitamins and minerals, which are required for providing proper nourishment to the skin cells. These nutrients can improve the cellular energy metabolism, keep the tissues hydrated, boost blood circulation throughout the skin surface and increase the strength of cell membranes.
  • The calcium content of sea salt can help in cleaning up clogged skin pores. If you have an acne-prone skin, go for the sea salt pore cleanser. It keeps your skin clean and clear by reducing the chances of skin infections.
  • You can also use sea salt as a natural exfoliator. The texture of this salt helps remove the upper layer of dead skin cells and reveal a fresh one underneath that.
  • Epsom salt is very beneficial for the skin. Application of this salt on moist skin gives it a soft and smooth appearance. It also acts exfoliates and removes all the dirt and dust accumulated on the skin making it fresh and young.
  • The anti-bacterial effects of coconut oil can aid in acne treatment. Actually, this skin oil comprises of high amounts of lauric acid and capric acid, which are antimicrobial agents that treat acne. Using coconut oil not only treats acne, but it prevents further outbreaks as well.
  • Coconut oil can benefit those with dry skin through acting like a skin moisturizer. A study explains that coconut oil is a highly effective moisturizer for flaky and dry skin.
  • Lavender oil benefits for the skin can be attributed to its antiseptic and antifungal properties. It is used to treat various skin disorders such as acne, wrinkles, psoriasis, and other inflammatory conditions. It is commonly used to speed up the healing process of wounds, cuts, burns, and sunburns because it improves the formation of scar tissues. Lavender oil is also added to chamomile to treat eczema.
We pilfered our cupboards for a jar and some craft supplies and went to work.
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Some scrubbing of the jar, a few artistic touches from Mermaid, a bit of a mess and….
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 VOILA!
Mermaid and I’s homemade body scrub.
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Happy relaxing!
Thanks for walking with us today,
Mermaid’s Mommy

Did “It Work?”

Jan24

1/3/16 – 1/17/16

Well, our 2 weeks is up and it’s time for results…

Remember we trialed the “It Works” exfoliating peel. We used this product two times a week, for two weeks, on Mermaid’s largest nevus area beneath her arm. During this time we stopped all other treatments; including lotions and soaps.

face-peel-4

Mermaid’s disease thickens, in time it is almost inevitable that it will become warty to the point that we will not be able to manage it with home care and that’s when surgery comes into play, if she chooses, or if it effects her joints on her hands. Over time you can see below that it begins to thicken. Even with moisturizers, this will happen. My hope with the exfoliating peel was that we could flatten the thicker areas and help prevent some of her “picking” and itching. Hydration is the most important factor in lessening the itch but the thicker it becomes the more painful it becomes.

Here’s where we started….

Day 1.

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and ended….

I am happy to share that yes, the exfoliating peel did just what it was suppose too.

Day 14.

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Let’s take a closer look side by side…

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To be honest I took NO pictures along the way and paid little attention to the effects aside form making sure Mermaid was not having any kind of negative reaction to the product. I am so pleasantly surprised to see the side by side this morning.

Mermaid’s skin is flatter and currently, is not scaling.

I would have to deem this trial a huge success!

As a loyal customer we paid $36.00 for this product ($60 retail) which seems to be on the higher end of most products we try, with the exception of the WartPEEL ($80) but it lasts. I too, used the product all 4 times Mermaid did on a patch of eczema (wish I took pictures) and we have well over 3/4 of a bottle left. If your weighing out the cost, I expect this product to easily last us 3 months for 2 people.

I will move this trial to our permanent page so you can easily locate it if looking for something to try.

Product Highlights

  • The Exfoliating Peel uses microbeads to quicken the process of skin turn over. By rubbing these microbeads on the skin you’re helping to exfoliate and rid the body of old skin cells, allowing the new skin cells to surface faster than they would naturally.
  • These microbeads are encapsulated with aloe, a super healing nutrient for the skin. The process of exfoliation can sometimes cause irritation, but the presence of aloe helps to avoid that. Aloe is a natural anti-inflammatory. As the microbeads are rubbed around, aloe is released to sooth, calm, and hydrate the skin.
  • There are NO HARSH CHEMICALS! The contents of the Exfoliating Peel are derived from fruit and are botanically based active ingredients.
  • The peel takes it all off revealing healthier skin and a more natural healthier you!

If you are interested in purchasing or just looking at any It Works products feel free to contact either friend of mine who will guide you through the uses and any information you could ever imagine wanting.

April Backwell

503-314-9348

Backwellfamily@gmail.com

or visit her website at:

http://www.aprilbackwell.itworks.com

or

Alicia Richardson

503-957-7126

Lishadawnn@gmail.com

or visit her website at:

http://www.dreamingwithalicia.myitworks.com

Thanks for walking with us today,

Mermaid’s Mommy

Our promise to you…

Jan17

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What’s to come in 2016?

As we tread towards our first full year up and running we want to give you an idea of what’s to come, If you are new to us and seeing this for the first time, I encourage you to read the very first post on our page “A tale of scales” and see what this venture is all about. Here is part of our line up.

  • End of January we will be meeting up with a fellow Nevus owner face to face to swap stories and learn more about her journey through childhood to adulthood with this disease.

 

  • I recently got an invitation to participate in a research study with Kaiser Permanente where I would provide my DNA and health information to the research center. They will use it to study how genetic and environmental factors affect health and look for new ways to diagnose, treat and prevent certain diseases. I will be looking into the possibility of Mermaid joining this study as well.

 

  • Remember, Mermaid’s official biopsy reading was:

-Epidermolytic hyperkeratosis.

Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.

So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide. We are going to dive further into what this truly means long term.

  • We will have a routine check up in the next few months and report on growth.
  • We are hoping to change the format of our site and be able to do some give-aways of all the amazing products we have encountered from local vendors.

 

  • There seems to be a lot questions surrounding the possibility of increased risk for a Wilm’s tumor so we will diligently research this to the best of our abilities.
  • We will hold a fundraiser for a research organization and donate on behalf of all of us.

Whew… looks like we have a lot to dive into!

We want to thank each every one of our readers and followers for spending the last 9 months with us, you have changed our world and given us strength we may have never attained on our own. If you would be willing to share your pictures or stories for others to see we would love to hear from you and feature you one month this year. I remain committed to understanding all forms of Nevus and continue my personal education to speak factually about it. If you are not yet following us, it’s easy, either change the view on your mobile phone to desktop view or from your PC go to the lower right hand corner and click follow.

Thanks for walking with us today,

Mermaid’s Mommy

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Wild for you…

Jan17

I’m always so excited to see the products we love pop up unexpectedly. I was recently at a friends house and spotted a bottle of Wild Carrot HERBALS product in her kitchen window. Being that I had never even heard of them until this new venture of Nevus entered our life I was kind of tickled. While shopping at my favorite natural store I came across a whole shelf of products, some of which I had never even seen before!

 

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I will forever be grateful to this company for sending my family an amazing package of their products which we have used in several different situations over the past 9 months. Most recently after trialing a cancer agent, we used the turmeric salve to heal a small burn, and it worked like a charm.

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If you are interested, check out their website at http://www.wildcarrotherbals.com ; they currently have  a sale going on. I’m heading there now!

Thanks for walking with us today!

Mermaid’s Mommy

when I’m gone

Jan9

I have never posted anything on my site not directly related to Mermaid’s disease, but I follow a lot of amazing blogs and writers and felt compelled to share this. I first fell in love with Rory and Joey Feek in 2008 when they were contestants on CMT’s “can you duet”; I thought Joey was the most adorable thing I had ever seen. In Joey’s last days of her losing battle with cancer you cant help but feel moved by the love Rory has so openly shared on their blog during this struggle.

One line specifically spoke to me….  “He knew I would need her to tell me goodbye… not just once, but a thousand times.”

Their blog is worth reading and if you never have – check out some of their music.

 

when I’m gone

by | Saturday, Jan 9, 2016 | Life | 489 comments

Joey and I have always tried to record songs that matter to us – songs that we can relate to in a personal way.

Some are songs we’ve written and some we’ve found.  More times than not, they’re songs about us – about our lives.  But from time to time, a song we record comes to life in a way we never imagined.

cont’ reading at….

http://thislifeilive.com/2016/01/

Will “It Work?”

Jan6

When it comes to trialing products, aside from a basic moisturizing product, I tend to shy away from Mermaid’s largest area of nevus. Not only is this part of her nevus in a sensitive location but it is the largest area.

However, I feel confident that this product deserves a fair shot to show its potential.

I’m sure by now you have all seen the recent rave over “it works” products. From body wraps to a daily dose of greens to essential vitamins. I have to admit, I recently jumped on the band wagon and purchased a few products.

One that caught my eye as a possible benefit for both myself and Mermaid was the exfoliating peel. Being someone that suffers from eczema on my face and arms it was a no brainer for myself. I get embarrassing spots, though small, on one of my arms and my cheek that crack, bleed and flake. The true purpose of this product is not intended to aide in eczema, and certainly not any form of nevus, but it does state that it will reveal softer, smoother skin.

face-peel-4

The product states that it is intended for the face and neck and we all know our faces are most sensitive. If its gentle enough for that use I see no qualms about testing it on Mermaid’s underarm.

We will trial this product at the 2 times per week per its recommended use for 2 weeks. During this time I will stop all other products to give it a true chance to shine.

Product Highlights

  • The Exfoliating Peel uses microbeads to quicken the process of skin turn over. By rubbing these microbeads on the skin you’re helping to exfoliate and rid the body of old skin cells, allowing the new skin cells to surface faster than they would naturally.
  • These microbeads are encapsulated with aloe, a super healing nutrient for the skin. The process of exfoliation can sometimes cause irritation, but the presence of aloe helps to avoid that. Aloe is a natural anti-inflammatory. As the microbeads are rubbed around, aloe is released to sooth, calm, and hydrate the skin.
  • There are NO HARSH CHEMICALS! The contents of the Exfoliating Peel are derived from fruit and are botanically based active ingredients.
  • The peel takes it all off revealing healthier skin and a more natural healthier you!

Here’s what Mermaid’s nevus currently looks like.

2016-01-04 20.25.51 (2)

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Looking forward to seeing what happens! Stay tuned for results…

Thanks for walking with us today,

Mermaid’s Mommy

2015 in review

Jan6

It’s crazy to think that I started this project as an outlet for myself, a place to journal and maybe, just MAYBE be a place for one or two other people to land while feeling lost; as I was.

In 9 short months people stopped by 6,500 times to see what we were up too. Thank you all for your interest and support. You will never know how much it means to us and we hope to double that in 2016!

HAPPY NEW YEAR!

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 6,500 times in 2015. If it were a NYC subway train, it would take about 5 trips to carry that many people.

Click here to see the complete report.