Tag Archive | anxiety

Our skin will not define us…

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

Twinkle, Twinkle

In my kitchen window sits a dried out yellow rose. When I see it, I think of the song Twinkle, Twinkle.  When I think of Twinkle, Twinkle, I feel brave and scared and confused and happy all at once. So what power does this dried out yellow rose hold that it can make me feel so many different things?

When Mermaid was little she didn’t sleep well. We would have to rock her for hours upon hours. I use to pace the house singing Twinkle, Twinkle. I can recall so many nights in her room just swaying and singing, the window in her room sits at just the right spot to bring in a smidge of the moonlight that would glow as we sang. When she had her biopsy I held her down and sang Twinkle, Twinkle. She still occasionally asks for it, only now, she can sing it with me, and it’s the sweetest thing you’ve ever heard.

An old friend of mine is currently in jail after being accused of a pretty horrific crime. The details are not important at this point in time, maybe another day down the road when the trial is complete she will choose to tell her story, until then, the details hold no weight in my purpose of this connection. She has a school-age daughter and through our entire friendship I always respected what a good Mother she was. She was so fun, full of life and always talking about her little angel. In recent years she had another child and despite our distance, I can only imagine she was an equally amazing Mother to them as well.

When I originally saw the newscast of her being arrested I was in shock, I went to our old group of friends looking for their reactions and almost felt numb. She was released for a short time in which I got to touch base with her but then she was re-arrested and has been incarcerated ever since. The person I knew, in no way, shape or form, had the ability to commit this crime. People all around me were telling me that “people break” they ” do things we would never expect”, one person told me she wouldn’t be there “If they didn’t have the evidence to prove it.” Yet I have still NEVER been convinced. Her first hearing was coming up and I asked multiple people to join me, I needed to see her face to face. I felt like it would give me a better feeling of what happened. In the end nobody came and I went alone. I don’t know what I was hoping for, I knew it was just a hearing with basic information, I expected it to last 10 minutes, I assumed there would be others on the docket, a room full of people where I would have simply blended in and I would have arranged my whole morning off to leave just as confused.

As I entered the court room I stalled. The entire thing was empty. Just then a lawyer walked in and asked me if I was there for that specific case, I said yes, and he assured me I was in the right place, then he left the room. 15 minutes until start time, nobody there. 10 minutes until start time, nobody there. I text a mutual friend explaining how odd the whole experience was, 5 minutes until start time… I hear someone behind a closed door state that she has arrived. I got butterflies, my palms were sweating, Why was I the ONLY person in this room? There she was, walked in by an officer, placed in a chair in shackles, just her, an officer and I. She had no idea I was coming, how could she, we had not had any contact since the night she was arrested for a second time. She looked beautiful, as usual. How she managed to pull off looking like she had make-up on is beside me, but she did. She whispered to me “Thank you for coming” asked about my Mermaid and told me she loved me.

As her lawyer entered the room and we were now passed starting time they spoke so quietly to one another I couldn’t hear what was happening. I then saw her lawyer pull out 2 round white buttons, a button I recognized. It was the voice box for a build-a-bear. She had two of them. In a silent court room, much like Mermaid’s room all those nights I walked and swayed singing Twinkle, Twinkle – she began to sing into them. One “You are my sunshine” and the other… you guessed it, “Twinkle, Twinkle.” I cant even begin to tell you the level emotion that took over. I sat there crying, watching this fellow Mother, friend, human being, sing her children lullabies into voice boxes so they wouldn’t forget her.

Court began. She was confident, brave and it was over. Until the real deal a few months away that is. As it ended her family showed up. They had been misinformed of the time and missed the entire thing. They arrived with enough time to sit down and be asked to leave. The lawyers finished up a few conversations and I waited in the hallway with the family. They shared positive information with me and her Mom asked that I stick around a few minutes for a picture outside.

Outside of the courthouse we were all given a yellow rose. We took a picture holding it and her Mom intended to send it to her to show her our support. I thanked her Mom, hugged her, and left.

When I made it to my car to leave I couldn’t go directly to work, I was on the verge of losing it, I was holding in so much. Instead, I drove to a nearby park on the river, put my car in park, the rose on my dash, and sobbed. So many lives have been effected by this terrible tragedy, two children are without their Mother, while my friend’s Mother watches her own babies life unfold, helpless, just clinging to hope. The echoes of her voice singing into the voice boxes ran through my head over and over. I cried until I had nothing left. I fixed myself up, and left. Nobody at work would know what my morning had been like. None of the patients would even begin to guess the despair I was feeling only an hour ago. The people I returned emails too would think it was a normal day, but it wasn’t.

I believe everything happens for a reason. We may not know the reasoning behind my friend’s story just yet, but I believe I was meant to be in that room, alone, with my friend, while she sang to her babies. I believe I was meant to have those few small moments to see and know that the person I knew, was still the person I knew. Call it what you will, I felt in that moment, as she sang so peacefully that my soul knew she would one day walk free.

That night I held Mermaid a little tighter, and sang her Twinkle,Twinkle.

The rose sits in my kitchen in the same vase I placed it in that day so long ago. It is dried perfectly and reminds me daily of someone else’s struggles.

Mermaid’s disease is harder on me than it is on her at this point in our lives. Our journey right now is about learning to cope with what life has given us. Throughout our path I have felt sad, anxious and nervous. Some of that I have overcome, some of that, I haven’t, but much like my friend, I have no idea what our future holds at this point in time. What I do know, is that something inside me, something strong, tells me that we are all going to be just fine. I think about my friend’s little girl pushing that bears hand and it singing to her, offering her comfort, just as it does for my Mermaid when I sing it to her. Our struggles, be them big, or small, lead us to find little rays of sunshine, small glimmers of hope that give us peace in merky waters. I believe Mermaid and I are on the path we were destined to be on, that she was given her disease to rise above and prove that being unique makes you shine.

Twinkle: shine with a gleam that varies repeatedly between bright and faint.

To my friend, may you ever see this, and all our fellow nevus owners, continue to twinkle.

Thanks for walking with us today,

Mermaid’s Mommy.

 

 

 

Staying afloat…

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As you may or may not know, the Pacific Northwest has been under a stream of storm systems causing flooding and power outages. I have been on a 2 day staycation and without power for the duration of it. Needless to say… I have been disconnected.

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Mermaid and I went for a short drive up our road to check out some of the damage. The power lines must have felt festive because they managed to wrap themselves through the trees like Christmas lights. We could hear generators running in the distance and saw neighbors along with PGE crews working diligently to cut and move downed trees.

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Outside of our drive; my dimly lit, slightly chilly home is my whole world. As Mermaid naps I sit writing in my trusty notebook by a lantern . (To be fair I am finally getting this typed up as I get a pedicure) It may sound far from ideal but being unplugged from the modern world got me thinking, my stress level is nearly non-existent. Without the constant stream of e-mails, texts, tablets and tv’s going; my focus has been on the simpler things in life.

Building castles, making shadow puppets, wrapping presents, reading, writing and reflecting. Part of that reflection has been pondering what initially caused all my anxieties around Mermaid’s disease? Yes, the initial diagnoses left me saddened but it wasnt until I started surfing the internet that I became so fixated on the potential negative effects of her disease that my fears were magnified. As I watch my seemingly happy healthy child live almost as normal a life as anyone else I think back to those first days. What if I accepted her diagnosis and left it at that, never looked anything up? Its funny, working in the medical field I am fully aware that turning to the internet for answers is one of the most detrimental things anyone can do, yet I did it.

So I wonder, had I been unplugged from our modern world at that time, would I have gone racing to the nearest book store or library looking for medical journals in search of cures and answers? Maybe, but maybe not. Maybe I would have accepted that first short visit as the end of our story and had the faith to blindly walk this path. I suppose we shall never know, and for that, I am thankful.

We live in a world where being uplugged is rare ,and for some, never happens at all. When my power returns I will be inundated with emails, fb alerts, picture texts and emails. This is a good thing, it means I am loved. Ok, maybe Amazon Prime doesn’t LOVE me, but they certainly want to make sure I don’t miss the next big deal!

I was built to find answers, I say I am thankful  for not being a part of the unplugged world because I am one of those  people constantly looking for logic and fixes. My need to have a direct answer to something has been both a negative, and positive in my life. In this case, I see it as a positive.

We all know this disease is somewhat manageable and the likelihood of one of those more severe complications is slim; but on the chance it occurs, I plan to be prepared and educated for what that might look like.

By means of the information super highway that provides me a road map of every potential route, through your stories and all our experiences I will continue to search for those answers and truly hope you continue to do that with us.

Until the power returns and my anxieties slowly creep back, I will enjoy the quiet. I will sit and listen to each raindrop hit the roof, each crackle of the fire and enjoy my Mermaid without distractions.

Where I may not be built to always be unplugged, I must say – I am enjoying it. I challenge both myself and all of you to unplug for a while and see where it takes you. Then rejoin the world and stop in to tell us what you did!

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Stay dry my friends…

Thanks for walking with us today,

Mermaid’s Mommy