Tag Archive | ILVEN

Our skin will not define us…

Jun12

All the stories I have shared about other people thus far, have been about fellow Nevus owners. It’s true, no ONE story is alike, nevus has a mind of it’s own and presents in so many different ways that each individuals experience looks different. We cannot say that what someone is feeling or seeing happen is right or wrong because the reality is, we just don’t know.

Meet Vicki, a lover of music, all genres but especially reggae, a singer, and a Pittsburgh Steelers fan from the East Coast. A beautiful Woman that as a child, played Pop Warner football and helps to lead the children’s choir at her church. Where Vicki has not “officially” been diagnosed with a form of nevus she has struggled for years with a debilitating skin condition that presents in many ways as ILVEN. She has faced other health challenges on her journey that she openly shared with me.

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Vicki remembers from a young age, 5 or 6, having spots on her left fingers and palm. Visits at both the Pediatrician and Dermatologist led to treatments with liquid nitrogen as they all thought her spots were warts. Vicki knew, even as a child, that they were not warts. It got to the point she would cry and beg her Mother not to go back because it hurt so bad. As Vicki got older, her skin condition got worse and more symptoms began to arise. Currently both sides bare her condition. She has it in her hair, side of face, both ears, neck, back, buttock and bottom of her right foot.

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Throughout her life Vicki has endured 5 biopsies, all of which have failed to pinpoint her exact condition. She has been treated with Humira for psoriasis, which made her extremely ill and despite the negative biopsies one physician insists this is indeed ILVEN. She has been to John Hopkins and hopes to return one day for more answers. The growth on her foot causes severe pain. It hinders her from walking and wanting to do the things she loves to do in life. In Vicki’s words “My skin itches, stings, blisters, bleeds and causes pain to touch it. When I shower the water hurts touching my body.”

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In addition to the skin disease Vicki has been diagnosed with a Rathke Cleft Cyst. A Rathke Cleft Cyst is a benign growth found on the pituitary gland in the brain. Typically RCC’s are asymptomatic but occasionally, if it grows large enough, it can cause visual disturbances, pituitary dysfunction and headaches. RCC’s are seen on MRI’s or CT’s of the brain. She has been told that her RCC will need to be monitored for the remainder of her life.

One of the physician’s Vicki visited suggested her symptoms may also be related to an autoimmune disease. She had a positive ANA and her physician suggested possible Lupus but again, no official diagnosis. A positive ANA alone does not necessarily define a diagnosis for Lupus but it IS present in 97% of people diagnosed with the disease. A positive ANA can be a sign of multiple auto immune diseases, a false positive or a reaction to a medication. A good rule of thumb with a positive ANA is to keep looking for the cause.

Between the possible ILVEN, Auto immune disease, Positive ANA, and RCC Vicki has had a rough time with her daily life. She has been struggling with depression and anxiety for quite some time. A once active vibrant being who was attending college, singing in the choir and happy; now says that she cries at the drop of a hat, lives life in pain and is full of anger and frustration at the fact that despite all her visits to the Dr. and multiple symptoms, nobody can seem to give her an official diagnosis. Her Pediatrician, who she saw until age 21, made the decision that she should stop attending college. She had missed a lot of class due to ER & Dr. visits, was falling behind and suffering daily with joint pain as she traveled from class to class making her late and aiding in her emotional instability.

Vicki’s biggest challenge is that she has a variety of symptoms that may or may not be connected to one another. The majority of us in our support group have an official diagnosis, though any form of nevus can certainly follow its own set of rules, it offers us a sense of relief to know exactly what it is that we are up against. I sympathize with her lack of certainty.

So how does Vicki cope? When she was about 22 she began using occasional marijuana. Her Doctors are aware of this choice and she states that it allows her to forget about “Everything” and manage her pain. I understand that this can become controversial but it is important for everyone reading this to understand that Vicki is coming from a place of struggle. I live in a very liberal state where this is normal for me to see on a daily basis. Living in pain and lacking the ability to enjoy life often leads us to any form of relief. Traditional medicine has failed to provide results at this time though she intends to follow-up with a Psychiatrist at some point and potentially start a medication regimen for the Mental Health side of things, but that is down the road. In the meantime she copes how she can, and knows how too with the support of her Physicians, family and friends. She continues to attend church and assist with the choir, something that has brought her joy since childhood.

Vicki’s case is complicated and rare, many physicians are led to a dead-end but it has not stopped her from pushing forward to find answers.

Vicki told me that she has 2 goals in life… first, to bring awareness around the World to invisible diseases. She wants to educate people to understand that not every disease requires a wheelchair, people with “invisible diseases” often get overlooked. She would also like to travel and hopes to one day be in a place both physically and mentally to see these dreams come true.

She recognizes that bad days will happen and the only way she will feel good during those times is to surround herself with positive people.

It’s human nature to fear the unknown, I for one struggle with “surprises” or not having a plan on a daily basis. Where some people thrive in going with the flow, I need structure and answers. I cannot even begin to imagine a life full of medical mysteries with little to no answers.

As the famous Lauren Hill once said:

“We can’t plan life. All we can do is be available for it.”

Vicki’s story brings to light an issue our society shys away from and I respect her willingness to let me share it, you may or may not know, that I work in Mental Health. I hear people day in and day out feel ashamed that they came to see us or express their families discontent with admitting any sort of psychological discord. It’s shameful to me that we still live in a world where Psychological concerns are not treated as openly and regularly as Physical ones. From day one my biggest concern about Mermaid’s disease was how she would handle it emotionally. Would this disease in any way, shape or form dictate her daily happiness or prevent her from doing things “normal people” do.

To me, with everything Vicki has endured, the most important one to speak about is the emotional effects. The reality is that we are dealing with an incurable disease, one day Vicki may get that official diagnoses confirming some form of nevus and we can share remedies we have used to ease the discomfort; but for now, we cannot cure it. Diagnosis or not, it sure presents as many others I have seen. I want to see us having more conversations about the emotional effects and aiding eachother in the healing of our souls. Afterall, we heal from the inside out.

Tonight both Vicki and I prescribe all our fellow nevus owners a dose of Reggae, listen to her current favorite song, “I’ll take you there” by Vybz Kartel and know you have friends from across our great country wishing you all the best.

Tonight Vicki, you are an Honorary Mermaid, Thank you for being so candid with me and sharing your story, where these stories are just small blips into the struggles one lives with on a daily basis they serve as a reminder that we are all human and our skin will not define us. You  are brave and helping us to forge a road of acceptance.

Thanks for walking with us today,

Mermaid’s Mommy

Tides are changing…

Jun12

A few weeks ago Mermaid was playing on the floor and her arm looked dirty, I asked her if she had been outside and what she had gotten into, as I got closer, I realized it wasn’t dirt at all, but Nevus. Then today, after bath time, I noticed even more changes and thickening. It seems as though overnight her Nevus has completely morphed.

I put together some comparisons and when I looked at our pictures from the first year, it amazed me that I was so upset, it seems so minor compared to now.

I have always hoped and prayed that Mermaid’s Nevus would not continue to spread, as I am sure all of us effected by Nevus have, but I knew deep down inside, that it would. I just didn’t expect it to happen so fast.

Mermaid now has a more prominent line from under her arm to her wrist, new growth on her hand, top & bottom (which is the one I fear will require surgery) and thickening on both her elbow and underarm.

Here are few of the changes…

New growth on arm:

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Elbow: 8 months apart

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Armpit: 8 months apart

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Armpit: Ages 1-3

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We have a dermatology appointment coming up and I will certainly be asking for more information about possible triggers that stimulate growth.

We have added some new pictures under the photos tab of both Mermaid’s Nevus and a friend’s. The progression is interesting to see.

Coming up this week we will have a story about a fellow member of our ILVEN support group so keep your eyes open.

Thanks for walking with us today,

Mermaid’s Mommy.

May30

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From our family to your’s…

Happy Memorial Day!!!

May we all remember what today is truly about and give thanks.

“True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost.”

-Arthur Ashe

 

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Thanks for walking with us today,

Mermaid’s Mommy

 

A,B,C,D,EHK,LEN,ILVEN,ENS…

May22

Navigating the world of Epidermal Nevus can be confusing. No matter how hard I try, I will never be able to forget the day I received Mermaid’s diagnosis. I know now that it’s going to be ok and we can jump whatever hurdle presents, but I didn’t always feel that way, we are constantly gaining new followers, many who feel the way we all did in the beginning. Lost. I feel like It’s been a while since we have broke down the basics, like what do all these acronyms mean? So many are used interchangeably that it may cause confusion and more fear. So, today I am going to break down 4 of the most commonly used terms surrounding EN that I see. LEN, ILVEN, EHK and ENS. I will touch briefly on other forms but highlight these 4 acronyms.

It is so important to understand that where all these terms refer to Epidermal Nevus, LEN is different than ILVEN, EHK is slightly different than both LEN and ILVEN and MOST IMPORTANTLY, having a diagnosis of Epidermal Nevus does NOT mean that you have the syndrome.

Here is a reminder of Mermaid’s official biopsy report:

-Epidermolytic hyperkeratosis.

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

Though we were told that ILVEN has not yet been ruled out.

(linear epidermal nevus occurs in 1 out of 1,000 people. However, epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide)

Epidermal nevus is a clinical term for a family of skin lesions that involve the outer portion of skin, the epidermis, and are distributed in a linear and often swirled pattern.  The lesions may be single or multiple and are usually present at birth.  All epidermal nevi show some changes in texture which can range from very rough, warty and spiny, and often darker than the surrounding normal or uninvolved skin (verrucous epidermal nevus), to red and scaly (inflammatory linear verrucous epidermal nevus or ILVEN),  to yellowish, rough and pebbly appearance due to proliferation of oil- or ’sebaceous’ gland-like structures (nevus sebaceous).

Epidermal nevi are genetically ‘mosaic’, meaning that the mutation causing the nevi are not found in other cells of the body. Mosaicism arises when the genetic mutation occurs in one of the cells of the early embryo sometime after conception; such mutations are called ‘somatic’ mutations.  This mutated cell, like the other normal cells, continues to divide and gives rise to mutated daughter cells that will populate a part of the body.  The linear patterning of the epidermal nevus reflects the movement of the mutant daughter cells during fetal growth.  These linear, developmental patterns are termed the ‘lines of Blaschko’.  Many epidermal cells within these affected areas harbor the mutant gene, while most or all cells from uninvolved areas do not.  After birth, the nevus “grows with the child”, although some new areas of involvement and/or extension of the nevus to new areas can occur.  ILVEN is an exception: here, lesions often do not appear until later in infancy or childhood.

Types of epidermal naevi:

The skin lesions most often referred to as epidermal naevi are due to an overgrowth of keratinocytes (horny skin cells).

  • Linear epidermal naevus
  • Epidermolytic epidermal naevus
  • Acantholytic epidermal naevus
  • Systematised epidermal naevus
  • Linear porokeratosis

However, several other conditions are also characterised by benign overgrowth of the epidermis and its appendages (organoid naevi)

  • ILVEN
  • Sweat gland naevi
  • Sebaceous Nevus
  • Comedone Nevus
  • Becker Nevus

Let’s start with LEN: Linear Epidermal Nevus:

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Linear epidermal nevus (LEN) is an uncommon skin condition. It usually affects the limbs and torso on one side of the body. The lesions are typically present at birth. LEN is the result of a genetic abnormality. It is not inherited but arises from somatic mutations in cells that occur after conception.

This is a type of birthmark that is usually present at birth, but may develop later in childhood. They are usually light or dark brown in color. They may start as a flat area in the shape of a line or as a “skin tag.” Over time, they grow and become thicker like a wart. They can be located anywhere on the body. Often, epidermal nevi follow a pattern on the skin known as the lines of Blaschko. The lines of Blaschko, which are invisible on skin, are thought to follow the paths along which cells migrate as the skin develops before birth.

Second is ILVEN: Inflammatory Linear Verrucous Epidermal Nevus:

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Inflammatory linear verrucous epidermal nevus is a special kind of epidermal nevus. Like other linear epidermal nevi, ILVEN is characterized by warty lesions that tend to group together in a linear pattern. The difference is that the lesions are red, inflamed and itchy, sometimes intensely so. The surface of the lesions may look like eczema (dry, red, scratched) or like psoriasis (red and scaly).

ILVEN most often affects one leg and may extend from the buttock to the foot. It may be present at birth, but usually arises during the first 5 years of life and spreads over months or years. ILVEN is very rarely observed during adulthood. It is somewhat more common in females.

Next up… EHK: Epidermolytic hyperkeratosis

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Epidermolytic hyperkeratosis is a skin disorder that is present at birth. Affected babies may have very red skin (erythroderma) and severe blisters. Because newborns with this disorder are missing the protection provided by normal skin, they are at risk of becoming dehydrated and developing infections in the skin or throughout the body (sepsis).

As affected individuals get older, blistering is less frequent, erythroderma becomes less evident, and the skin becomes thick (hyperkeratotic), especially over joints, on areas of skin that come into contact with each other, or on the scalp or neck. This thickened skin is usually darker than normal. Bacteria can grow in the thick skin, often causing a distinct odor.

Epidermolytic hyperkeratosis can be categorized into two types. People with PS-type epidermolytic hyperkeratosis have thick skin on the palms of their hands and soles of their feet (palmoplantar or palm/sole hyperkeratosis) in addition to other areas of the body. People with the other type, NPS-type, do not have extensive palmoplantar hyperkeratosis but do have hyperkeratosis on other areas of the body.

Epidermolytic hyperkeratosis is part of a group of conditions called ichthyoses, which refers to the scaly skin seen in individuals with related disorders. However, in epidermolytic hyperkeratosis, the skin is thick but not scaly as in some of the other conditions in the group.

Lastly… ENS: Epidermal Nevus Syndrome

The term “epidermal nevus syndrome” has generated significant controversy and confusion in the medical literature. Originally, the term was used to denote a disorder that was actually several different disorders erroneously grouped together. In the recent past, the term was used to denote a specific disorder now known as Schimmelpenning syndrome. However, the term epidermal nevus syndrome could be correctly applied to several different disorders. Therefore, the umbrella term “epidermal nevus syndromes” now represents a group of distinct disorders that have in common the presence of one of the various types of epidermal nevi. However, there is so far no general agreement how to classify the types of this diverse group of disorders, adding to the confusion within the medical literature

Epidermal nevus syndromes (ENSs) are a group of rare complex disorders characterized by the presence of skin lesions known as epidermal nevi associated with additional extra-cutaneous abnormalities, most often affecting the brain, eye and skeletal systems. Epidermal nevi are overgrowths of structures and tissue of the epidermis, the outermost layer of the skin.

In ENS, neurological involvement may include:

  • Epilepsy or infantile spasms.
  • Intellectual impairment.
  • Structural or vascular brain abnormalities.
  • Spinal lesions.

Skeletal involvement includes:

  • Incomplete formation of bony structures – eg, spina bifida.
  • Hypoplasia of bones.
  • Bony cysts.
  • Asymmetry of the skull or spine.
  • Spontaneous fractures and rickets.

Ophthalmic involvement includes:

  • Colobomas.
  • Strabismus.
  • Ptosis.
  • Nystagmus.
  • Corneal opacities.
  • Retinal changes.
  • Various other ocular abnormalities which have been described.

Endocrine features have been reported:

  • Hypophosphataemic vitamin D-resistant rickets has occurred in a number of cases.
  • Precocious puberty has been described in several cases.

Syndrome of inappropriate antidiuretic hormone (SIADH) has been reported in one case.

Other potential complications of EN:  

Complications due to Epidermal Nevus are rare; but, it is observed that there is an association with the development of basal cell carcinoma, squamous cell carcinoma, keratoacanthoma, and clear cell acanthoma.

It is suggested to search for dysplastic kidney disease in patients with neurocutaneous disorders. Neurocutaneous syndromes are disorders that lead to growth of tumors in various parts of the body. One being a Wilm’s tumor. They’re caused by the abnormal development of cells in an embryo and characterized by the tumors in various parts of the body (including the nervous system) and by certain differences in the skin. It is important to understand this is very rare but something to be aware of.

Whew, that was a lot of information, I hope it brought a small amount of clarity surrounding all the terms thrown out there.

Thanks for walking with us today!

Mermaid’s Mommy

Buzz buzz little bee…

May12

After using a product called WartPEEL on Mermaid’s thicker patch of Nevus it proved to be raw and a bit painful. I had been sent some amazing products from a company called Wild Carrot Herbals and amongst them was a salve. I personally had never used one but thought it might be the trick, within 24 hours all the rawness, swelling and discomfort was gone. I was beyond tickled and started reading more about “salves”.

Mermaid has one particularly “itchy” spot on her back so I thought I would take a swing at making my own. I researched all the ingredients that potentially soothe dry or itchy skin, a few recipes and came up with my own concoction.

I’m blessed to have a lot of savvy people in my life so most of these ingredients were gifts from people’s own labor’s of love. I included:

  • Pure raw honey – (given a jar from the neighbors hives)
  • Organic Beeswax – (given a bar made by my parents from their swarm)
  • Shae butter – (given a pure bar from a local Oregon company)
  • Lavendar oil – (a gift from Mermaid’s Grandma)
  • Coconut oil
  • Baking soda

The process in harvesting beeswax is interesting and my Mom had some pretty great pictures – here are a few.

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We gathered our ingredients:

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Started prepping them, if you have ever tried “grating” beeswax, it’s not easy, Mermaid gave up on that part and let Mommy finish.

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Melted part of them together:

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Time consuming, I learned quickly that slow and steady is required. After it was all melted we removed it from the heat and slowly added our other ingredients.

We poured it into a few containers and waited for it to cool. I feared for a minute that it might not bind, it stayed liquid for better than an hour and we continued to mix it, but eventually, it became this nice smooth product.

Given the ingredients I expected it to be slightly oily, which it is but we put some on Mermaid’s arm and it absorbed quickly with less grease left behind than I assumed would be present.

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We added a little garnish and closed up our afternoon project.

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I suppose the real test will be to see how well it really works, I have high hopes!

We are going to ship a container to one of our “itchiest” Nevus babies on the other side of the country and let them be the true judge.

We have plenty of leftover ingredients so I feel a round two of a lotion coming on.

Round one of find a natural aide complete.

Thanks for walking with us today,

Mermaid’s Mommy

 

 

Happy Mother’s Day!

May9

Mother’s Day, by definition, is a celebration honoring the Mother of the family, as well as motherhood, maternal bonds, and the influence of mothers in society. Over the year’s, like many other holidays, it has bloomed into a bit of a Hallmark holiday. Cards, flowers, a gift, perhaps a nice gesture… and done. I question if buying someone flowers and signing your name on a card really encompasses “honoring” what Mother’s really are. So this year (yes, we still made cards and will do a nice gesture) I want to capture a little about what makes Mom’s so special.

For me, I don’t think I ever really grasped how important or hard a job it is to be a Mom until I became one myself. Sure, my Mom always asked me if I had clean underwear on while we were driving to the Dr. (what would she have done if I said no?), she fed me ice cream when I had my tonsils out, carted me back and forth to girl scout meetings, softball, basketball, volleyball, took me prom dress shopping, bought me my favorite ice cream from the schwan’s man, and let’s just be honest here…. she still loved me through my terrible teens and early twenties when I thought I knew it all, yet managed to screw up everything.

My Mom also did some things I will never forgive her for, like letting my Dad drive us to my junior high concert in a yellow 70’s something Chrysler my Grandparents had given us, it was the size of a house, literally, you could fit 17 people in it comfortably and if my memory serves me right, we got pulled over in front of the gym for everyone to see.  She took me through the bank drive thru with curlers in my hair for all the ladies to gawk at and I’m pretty sure I had a mullet for a solid 2 years. She made me sit at the table with a plate of eggplant parmesan in front of me for at least 14 hours, what kid eats that? Really, what adult eats that? Gross. She made me pick up filberts, apples and plums from the yard for hours. Ever owned a filbert tree? Your lucky. It’s a really quick way to turn your children against you. When I was a teenager, my Mom & Dad rode their bicycles through town in spandex and helmets, even to the river where I was hanging out with friends jumping out of a tree into the water cheering me on. Talk about embarrassing. Worst ever, wore matching fanny packs with my Dad in PUBLIC, once, for an ENTIRE vacation in California.

So ya, My Mom did the great normal Mom stuff, the embarrassing, I will never forgive or forget stuff… but she did two other things and these are the things I want to recognize today, as we honor our Mom’s.

#1. My Mom created stuff and let me be free. She did and still does all those things that are a dying breed. She painted, did ceramics, quilted, canned, made jam, salsa, sewed my Halloween costumes, gardened, took us to the river and let us run free while she enjoyed the sunshine and a good book, let me float the creek with friends and walk on the country road back home with no parents, let me ride my bike all around town with friends for hours, play kickball in the middle of the road with the whole neighborhood, go on a road trip with the neighbors, travel to Canada with my aunt and uncle, sleep in tents in the yard, be bussed to a school 20 miles outside of town in the middle of nowhere with about 20 kids where we learned about the forest, hiked and got to play hockey in the gym with the Portland Winterhawks… she taught me how to be creative and make things and live outside the box. She stayed close, but let me wander.

I look around my house today and see things she has created, and things I have created. Had she not done those things, I probably wouldn’t have either. I truly believe my expression through writing stems from feeling a sense of freedom for so long. The world feels like a different place now and some of the things we were free to do as kids may not pan out but I am grateful that at that time in my life, my Mom recognized that it was ok to let me find my own adventures. I already see myself doing the same things with my own daughter. Teaching her to cook, taking her to the river for the entire day while she explores, creating lotions and scrubs for her skin, it all stems from my own Mom’s creativity. For that, I feel honored.

#2. I selfishly resented my Mom for this decision for a long time, but stay with me, it makes sense, I promise. Up until a certain age my Mom was always around. She was there when I got home from school, took me everywhere I needed to go and tucked me in at night.  She had gone to college when she was younger and graduated but didn’t find a good use with her degree, then came marriage and kids, for so long we were her world, and she was mine.

She made a decision when I was in grade school to go back to college to become an RN. Suddenly she was gone, or studying and wasn’t all mine anymore. After she finished and started her career she was gone nights, weekends, holidays… paying her dues as a new nurse, but all I knew, is that she wasn’t there as much. I don’t know that until this very moment that I have ever actually admitted that I was jaded about it for a while. When your young, you don’t always understand the reasons for adult decisions. I wasn’t able to see that as much as she needed her own identity, she did it for us, her family.

As an adult I now understand and respect that decision. I can’t imagine our lives had she not made that decision, but I didn’t always make it easy on her, I became a rotten and at times ungrateful teenager and for that, I am sorry. As I look back now, and from a “Mom” perspective, I can’t even begin to imagine how hard that was. To juggle family, home, work and school, it’s a tough feat. Something I certainly do not long to do. As a result of her decision she has done some of the things that make me admire her the most. Like working in hospice. A job where you are there to make people comfortable in their end days, you become attached to their families, to the patient, only to have to let go. A job I truly believe only an angel can do.  She worked her way through the ranks managing many different units and teams, worked in critical settings making life decisions and made career choices that ensured a better future for all of us.

I didn’t like college, more than a few times I changed my path, stopped going, wanted to quit… but I knew if she could do it with all those other factors in play, I could too. My Mom gave me the strength to finish, and for that, I am honored.

It’s important for me to recognize the things I did not always understand at the time because one day, I may be in the same boat with own daughter. On the flip side, it’s equally important for me to share what these things mean to me today. I am much better at putting things in writing than saying them in person so I dont give my Mom the credit she deserves on a daily basis but need her to know her worth.

Our Mom’s are so much of who we are, I only hope that when my Mom looks as me, it’s with the same pride and honor as I have when I look at her.

There is no truer statement than “it takes a village”, I had surrogate Mom’s that took me in as well, Aunts galore; Cindy, Leora, Pam, older cousins, My Mom’s best friend – my Aunt Miss, my Godmother Peggy my best friend’s Mom’s Tammy and Maryellen, they all fed me, kept me in line… called my real Mom when I was hanging out with boys I shouldn’t have been or throwing parties when my parents were gone, thanks for that by the way, but they too helped plant seeds of freedom, creativity and hard work. As I look back I feel so thankful for my village.

I now have my own daughter, and she too, has her own village. Where I try to instill all the wonderful things my village gave me, I am a working Mom, I love my job, I sometimes contemplate if I’m doing the right thing, that perhaps I should stay home with her, but the truth is, I am my best me when I have more than one responsibility. I was nearly 9 years into my career before she came so in a sense, it’s my baby too.

When I cannot be there she is in the hands of her teachers who have helped raise her since she was 4-months old. A group of Women who I trust whole heartedly to do right by my precious gift and encourage her free soul. She has Auntie Nay and Grandma who step in when needed. She has Mommy’s friends Jen and Molly who treat her as their own and she has this whole network of people here, from around the world, rooting her on in her uniqueness.

My favorite thing about being a Mom is watching the world through Mermaid’s eyes. With the exception of believing swiper fox will steal everything she owns, she is unscathed. Everything is amazing and exciting. The tiny villages of ants in our yard are a precious world to her. She thinks the bees live here to make honey just for her. There is no concept of time outside of light and dark and responsibilies are an after thought. She believes she is a ninja, a mermaid and a chef, so I believe she is too.

This Mother’s Day, opposed to just a card or a nice gesture, I challenge you to tell your village those things they did that make you proud, the things that make you feel honored to have them. The things that added value in making you who you are today.

To my Mom and my village, where I know I did not always make the best choices, I came out on the upside because of who you all have been for me. Mom, I am proud and honored by each and everything you have taught me, each and every decision you have made for me, be it easy or hard, and thankful that you were chosen to be mine.

Happy Mother’s Day to all my fellow Mommy’s.

Thanks for walking with us today,

Mermaid’s Mommy

 

Isotretin what?

May7

ok… it’s Accutane, otherwise known as Isotretinoin or Roaccutane, depending on what part of the world you are in. Most of us just think of it as acne medication but has recently been suggested to a friend for ILVEN. So let’s take a closer look at how it works and the risks.

Accutane is a form of vitamin A and is part of a class of medications called retinoids. It was originally marketed as a chemotherapy drug.

Exactly how Accutane works on a cellular level is unknown but we do know that it affects all four ways that acne develops.

  • 1. It dramatically reduces the size of the skin’s oil glands (35%-58%) and even more dramatically reduces the amount of oil these glands produce (around 80%).
  • 2. Acne bacteria live in skin oil. Since oil is dramatically reduced, so is the amount of acne bacteria in the skin.
  • 3. It slows down how fast the skin produces skin cells inside the pore, which helps pores from becoming clogged in the first place.
  • 4. It has anti-inflammatory properties.

 

Number 3 and 4 are probably the most important factors when considering this drug for ILVEN.

The most common side effects of Accutane are dry skin, itching, rash, dry nose, nosebleeds, cracks in the corners of the mouth, dry mouth, dry lips, cracking or peeling skin, inflammation of the whites of the eyes, dry eyes, joint pain, back pain, dizziness, drowsiness, nervousness, or changes in your fingernails or toenails.

There are more severe side effects but they are very uncommon and let’s honest here, all medications come with a laundry list of side effects, however, here is one of the more significant ones.

Accutane can cause birth defects in babies, so women should never take the drug if they are pregnant. I found some literature stating that women have to sign an agreement to take two different forms of birth control and take pregnancy tests while they are on Accutane, to make sure that they do not get pregnant while taking the drug. Because of all of the negative side effects that Accutane can cause, the negative aspect of the drug has been played up significantly.

There is no scientific evidence proving that Accutane can cause infertility later on years after taking the drug, but there are lots of online forums and message boards that indicate that many women think that Accutane is the reason for their fertility difficulties. I visited many of these me boards and asked for feedback, to my surprise, several people wrote back that they did in fact get pregnant in time.

I must have read 10 different case studies that offered little to no information about why Isotretinoin did not work as therapy for ILVEN but all cases suggested minimal effects. Minimal meaning, it DID in fact have some effect, just not enough to continue.

To my fellow readers, I am curious to know if you have tried this form of treatment and if so, what were the results? Do you have any advice for those being offered this as a potential treatment? Thanks for your feedback!

Thanks for walking with us today,

Mermaid’s Mommy

 

Opposites attract….

Apr27

I owe my readers an apology, this month has been… well… shitty.  I have had so much negative and sorrowful energy surrounding me that I have failed to keep up with Mommy’s Mermaid, failed to return messages via FB, text & email to people reaching out and failed to really be present in anything. I am far from a stranger to tragedy or heartbreak but these past few weeks consumed me. I allowed myself to be sucked into things that were and are completely out of my control. It’s ok, we all do it, I know this, but why right now, do I suddenly feel like a weight has been lifted off my shoulders. Perhaps I wallowed in self pity long enough that it got old, maybe I realized things would slowly turn around, or maybe… it took one tiny small event to shift the waters.

Friendships are formed in the oddest of places. I have formed one with a fellow nevus Mommy on the complete opposite side of the country. Opposites attract right! Over the past year or so we have talked late into the night about life, family, our kids, this disease we despise. Shared products, ideas, information from our dermatologists, happiness and our anger.

A few nights ago a conversation started and things were said that changed my outlook. This friend of mine told me about her recent frustrations and shared about their Dermatology  visit that day. Their Physician told her that everyday she writes down four things that make her day great, and today, she would be one of those four. She told me she should start doing the same and that today, I was one of her four. She shared with her physician how much our conversations meant to her.

It’s mind boggling to me that I could be of any help/support to anyone, let alone be one of the great things in their day when I was struggling to find just ONE great thing over the past few weeks…. and that’s where it changed. Yes, I have been sad, I have been a big hot mess, to be honest, I’m not sure how I even managed to appear normal the past few weeks, but somewhere admist my travels down the rabbit hole, I gave enough to make someone elses day great.

It reminded me that no matter what we are all going through, despite our own depiction of what we are, we are ALL effecting one another. Take that in for minute…

Pretty wild isnt it? The smallest of gestures or words can completely alter ones mindframe.

Funny thing is… every time we talk, she is one of my four great things in my day. There are few people that understand Mermaid’s disease, even if they think they do, they dont ask about it or truly understand the fears that coincide with it… and they shouldnt have too. That’s my job, our job, as Mom’s, to carry that worry, to work together to not only build the confidence in our children about their “beauty marks” but build the confidence in one another to be that source of strength.

This disease cannot be cured by lotions, diet changes, medications or heaven forbid; surgeries. It’s here, to stay. Some barely noticeable to the eye, others… plagued with what others consider “unsightly”. Until you live it, I’m not sure you will really truley understand the feelings behind a child asking you to make it stop, to – in Mermaid’s words “take me to the doctor so he can take my scales” to a sobbing little one from the itching and pain or that dreaded call of being told you or your child has in fact developed complications.

What we cannot fix, we can absolutely, undeniably make acceptable. We can make this disease always be number one on our list of great things that happened today, for without it, we would not have learned the level of compassion, strength and protection we all own.

We often forget that where we cannot always control the things that happen around us, we CAN control how we react and handle them. I for one, was quietly reminded of this. Mermaid’s disease is often a foot note in our journey, especially these past few weeks, but wherever our path is heading, I am happy to have you all on it.

To my fellow Nevus Mommy, my friend and my late night confidant, I thank you for sticking by me, for encouraging me, and for always being there to sort things out.

I challenge everyone reading this to write down four things that made your day great.

We have a lot of great nevus stuff coming up, making a home remedy, the discovery of a new medication and some great events to share so forgive me for our brief absence but stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy

Sun’s up…

Apr11

It seems like only days ago it was near dark as I drove home from work. I’m use to it spending the majority of my life in the Pacific Northwest, and don’t get me wrong, I love it here, I have tried living other places only to miss my four distinguished seasons; but this year I seem to be ready sooner than most for longer days.

Nearly overnight we went from being stuck inside from 5:00 pm until the following day, to not even thinking about stepping foot inside until close to 8:00. The past few nights we have witnessed the signs of summer creeping in. The neighbors came out and we shared an evening walk/bike ride, dinner on the patio, lawns being mowed, flowers blooming, birds chirping… It’s as if new life has taken form on our sleepy country road.

Those that know me well; know one of my happy places is surrounded by our friends. Many of them I consider family. The first sight of sunshine and I was already planning a BBQ. Yes, I love our friends, but their presence is so much more than just company. These are the people who stood beside us as we said our vows, paced the lobby with my family when Mermaid was refusing to join us in the world, cried with us when we lost loved ones, supported me when I said I have this crazy idea to start sharing our life online, reached out and waited just as impatiently as we did for Mermaid’s diagnosis, get us through our days when we are away from our family and did all of this, plus countless more, not because they had too, bound by blood, but because they wanted too.

(Don’t worry those of you that couldn’t make it, we feel the same about you!)

We are blessed ten fold to be surrounded by people who despite our individual religious or political views, despite where we came from or where were headed, continue to make that choice in walking with us. I have spoke before about how important the people we walk through life are, they have helped shape who we are today and who we will become tomorrow. They are a solid. It’s important to me to show that solidarity to Mermaid, to show her that from the beginning she has had all this support. That despite her differences, she is now and always will be surrounded by a solid. If we can teach her now, the importance of building those meaningful, lasting relationships, she will build that for herself when we are no longer responsible for her surroundings.

I took a brief moment to stand in the kitchen, veered past the dried out yellow rose in my window sill, and watched life happen from a distance. I saw one of our Groomsmen catering to a 3 year old child he felt as his own, a couple well on their way to beginning life – attempting to have a child, a former co-worker turned best friend laughing a belly laugh I hadn’t seen in quite some time, my soul sister watching her new love with gazing eyes, Our responsible DD on duty waiting for her next call indulging in everyone’s antics, Newer friends sliding into the madness as if they had been there forever.. I paused, took it all in… and rejoined life.

I hope if for nothing else in this world for my Mermaid, that one day, she too, will look out her own window and see  how grand life can be. That for small moments in time we are all connected, all the same, despite how different we really are.

I started this post the night after our BBQ, above is as far as I made it, I had a better ending, I had a real connection to my point, but that fell short by one of the people I gazed out at…. tragically losing their life the following day. I have hesitated to post this, perhaps it would feel inappropriate in the wake of life’s events, drudge up hurt or sorrow, but I decided to finish. Afterall, our journey, be it Doctors appointments, public shame, questions, is what I signed up for. I took an oathe to myself and or readers to share our journey, so I will now try to conclude.

Many moons ago I met an amazing young woman, we went to college together. We started within a short time of eachother at the same company, in the same department, with the same doctors. Our professional connection means little. I honestly cant remember a time in my life where said person and I couldnt pick up the phone and hash out lifes issues, Through weddings and babies, SO many crazy nights, our “crew” moving away, making new lives, and finding ourselves, we were there.

I hadnt seen her happiness shine through the way it did that day in a long time. They were the couple starting a new life – attempting to have a child. Her better half lost his life in a tragic motorcycle accident the following day. For someone who feels pretty confident in their words, I don’t at this time. I wish I could say that things get easier with time, I can’t. I want to text, call, show up and think that my presence makes it better, but I know it doesn’t. I KNOW more than anyone could ever possibly imagine that an event of this magnitutde leaves you stranded.

Here is what I will remember, on a sunny day in April,  rare to the pacific northwest, I got to laugh and share about life with the person that made her so happy. We shared not only a Birthday month, but a work anniersary. That for a brief moment, I stood back and watched, I saw, I know, what happiness is.

I cannot give the happy ending I intended this post to have the way I would like too, but what I can do, is promise you, promise you all, anyone that takes the time to read this, that whether you know I feel it, or see it, your presence, big and small, gives me hope for better days. Your mere presence gives me the strength to continue writing about our journey and know, to really, really know, that Mermaid has the best most amazing foundation anyone could ask for.

Our random April get together was sporadic, it was fed by my own selfish need to feel the rays on my back and the love of our friends, and it will forever remain that.

I will share with Mermaid, later in life, the people that made me… well… me… and to everyone present, know that you too, will forever be a part of our solid.

Cheers to sunny Saturday’s.

Thanks for walking with us today,

Mermaid’s Mommy

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Happy Birthday Mommy’s Mermaid!

Apr10

Today officially marks ONE YEAR of Mommy’s Mermaid. I want to start by thanking each and every one of you that are reading this now, and anyone that has ever stopped in to see what we are up too. Without you, we would not still be here.

I had this idea for a while before starting it and one night decided just to jump in head first. I knew absolutely nothing about the blogging world. I had no idea how to start, how to get eyes on my writing or how to share our journey. I am still learning but have found a few avenues to help gain publicity and for that, I am ever so grateful.

I knew if it was going to flop I would know fairly quickly. I remember my first month having nearly 500 people stop in to visit and I was floored. I decided to set a personal goal of roughly 10,000 visitors by our Birthday. If I hit that number, or anything even close to it,  I would know my time and energy would somehow be validated. Well, guess what? We hit it!

The past year has taught me so much. I think of a quote by C.S. Lewis…

“Isn’t it funny how day by day nothing changes, but when you look back everything is different.”

It’s so true, I felt nothing change but as I look back over the past year it’s all so different. Mommy’s Mermaid re-sparked my desire to write. It went from an idea on the chalkboard in my kitchen to a part of our family. As long as I can remember I loved to write. As a school age child I wrote a Children’s book, in Junior High I started writing poetry, High School I did a lot of free writing, had a small gig with a local newspaper and journaling; and as a young adult I had this burning desire to tackle a book. Life happened, I went through a lot personally as a young adult. I experienced a massive amount of death, had some pretty terrible things happen to me which I will choose not to delve into and I did not deal well with any of it, I spiraled a bit and spent years not caring about much of anything. To put it bluntly, I was a hot mess. I needed that though, I needed to stumble to show myself I could prevail. It might not make sense to you but I am the type of person that loves with everything I have. I might not say it on a daily basis or shout it from the rooftop but I feel it. Everything I experienced left me broken and empty. I spent a few years repairing myself and some of the damage I had caused and more recently learned to let go of some of that grief. I found my passion again through Mommy’s Mermaid.

This past year as led me to some pretty amazing acquaintances and friendships. I look forward to the day so may of us get to meet in person. Multiple local businesses have sent me products and encouraged me to continue our journey and Mermaid herself has become aware of her “scales” and her “computer self” and loves to help Mommy create and try new “special soaps” or products.

My original plan was to write about what we knew, Linear Epidermal Nevus, but over time I realized that there are so many different forms of nevus that many of us would never know existed without the internet to connect us all. There are so many things we can do together to help change the face of this disease. Number one, awareness. The psychological effects from owning a nevus alone can be devastating. For those challenged with syndromes and physical complications it can be life altering and life threatening. We have an opportunity to raise money for those families needing to pay for medical expenses, time off work and trials. We can help support research to hopefully one day, find a cure, be it for those who develop cancer or simply for cosmetic purposes to decrease mental health issues. Over this past year I have realized that Mermaid’s disease is next to nothing in comparison to others, but the existence of it is what started this all.

I have learned that simply writing about the “facts” – what the diseases are, the potential complications, testing involved etc. is not so captivating. To those with the disease it’s helpful but those without need a different connection to help understand where we are coming from. Writing about our daily experiences with others, sharing stories of other nevus owners and putting bits in about our personal life gains the most interest. So much of this disease is navigating the day to day changes, one day can be unbearable while another you can completely forget it exists. Where you may not focus on the physical challenges daily, we monitor the emotional challenges non-stop. Being able to connect with our readers on a multitude of levels is imperative, even if that leaves us vulnerable at times. Again, I thank you for your interest in our story.

Over the past year we have learned about and gone through the biopsy process, vision concerns, eye testing, participated in research, met fellow nevus owners in person, shared trials and experimented with some heavy products, shared other peoples stories, raised some money for a few families and opened up our lives very publically. Through all of that, my favorite moments are still the random messages thanking us for speaking so openly, people reaching out with their stories and those just wanting to talk. Being the parent of a Nevus owner sometimes leaves us feeling helpless so the fact that ANYONE would choose me to reach out to just to talk is humbling.

I have a pretty drastic idea for a big change coming to Mommy’s Mermaid over the next couple of months and if I choose to take the plunge I hope you all come with me, until then, I will continue plugging away and bringing you as interesting of material as my brain can conjure up; and who knows, maybe this will be the year I finish a book!

We are eternally grateful for all your support.

Thanks for walking with us today,

Mermaid’s Mommy