them

A friend once told me to “say it out loud” and for what felt like the first time ever, I did. I had spent years upon years keeping it in. I always reacted to the initial shock, poorly at that, then locked it up to be strong for everyone else, until it happened again and I repeated the cycle. I had terrible coping mechanisms, was unable to move on and had I not finally said it out loud, I still would. It sounds so simple now, but it wasn’t always. I now say it a lot, not to just anyone, to my inner circle and myself, but in a healthy way and understand that it’s perfectly normal. In fact, it opens the door to understanding of myself and to others. So I will say it now, on the most public forum I have ever done so and I will own it.

I am sad.

Three of the most powerful words I ever said out loud. I use to have this mantra that I needed to be the one everyone else could lean on, pretend I knew the right thing to say and that no matter how I felt inside, I had it all together and could easily move onto the next day, but it was a total lie. You see, by the time I as 17, I had put more people in the ground than most adults I knew. Death seemed to be a normal occurrence in my world and being so young I lacked the ability to understand it. I didn’t understand how all these people I was so close too were leaving me. I was damaged, and I still am, but now I have a different kind of strength. Not the strength that tells me I need to hide it and be the go to person, but the strength to speak up about how I feel about it, to openly process my feelings and admit to myself that “I am sad” and truly know that it’s ok to feel that way.

The disaster I call my youth is a whole other story for another time, what prompted this post was a fellow member of my daughters support group for her genetic disease, who reached out to me a while back with their raw, true emotions. They told me about the pain they live in – both physical and mental, the ridicule they received for the way they looked, how it caused them to have anxiety and depression, lack experience in relationships and how every now and then, they feel like it would be easier to just end it all. They went on to tell me that they know how they would do it and have sat there alone at night legitimately pondering it, this was one of those nights they were struggling with that decision. So, there I was again, feeling sad. It scared me for so many reasons. Was I  the last chance? Can I handle this pressure? For them, their family, their friends, to carry on their pain without them in a different way and I thought back to the days following Mermaid’s diagnosis when every word this person was saying ran through my head like a freight train. I listened and listened and I listened, all the while, feeling slightly selfish that it had my mind wandering back to own thoughts, but I continued to listen.

I made a decision while on maternity leave with Mermaid that I needed to make a life change. I was burnt out working in Primary Care and truth be told, it’s never where I wanted to be, but I was so mesmerized by the two people interviewing me at my first potential job in the real world that I took the job. The manager was from Canada and his accent made me laugh but he was so educated, and the RN was stunning. She was beyond put together, very proper, soft-spoken, this twinkle in her eye and I knew I could work for them. Well, almost 10 years later there I was, still in Primary Care plugging away. That very nurse had spent the first 5 years of my career teaching me right from wrong, had been a friend a team lead and encouraged me when I talked about movement. Now that I wanted to make a move it needed to be angled back at what I originally wanted, and there it was, truly – like big flashing arrows pointing at the job posting. Mental Health. I applied and shockingly I got it, I thought for sure this was going to be the greatest transition ever.

Well I thought wrong, at least for a while. This is the absolute truth; upon my arrival I was point-blank told by multiple other staff members that they didn’t want me there. They had no idea how I could be a piece of their process and one person honestly said to me that he thought I was delusional about working there. Don’t worry, those people no longer work there for reasons completely unrelated so I am not outting anyone in our present environment. At the time, their world consisted of Psychiatrists, Therapists and a few nurses that didn’t see their patients on a daily basis but were tucked away on the phones handling the back scene crisis situations. The department was changing and growing, adding more nurses who were slowly becoming more involved in the daily routine, Medical Assistants, Case Managers and Social Workers. I was one of the first people to arrive in an expansion continuing to this day and spent the first two weeks sitting in my chair spinning in circles watching the clock because nobody would hardly even speak to me. I knew I had to prove myself but needed help. Help is just what I got, one of the Psychiatrists who was onboard with me being there actually told me that he had helped fight for more staff. and support. He led me through some basics and continued to support my presence on a daily basis. Slowly his patients grew to like me and in time, I had a small space where I fit, but I couldn’t shake the initial distaste for my presence.

As I continued fighting , completely determined to prove everyone wrong, to show my worth, I had a whole other struggle that came to light just after my transfer. Mermaid’s complicated new diagnosis of Epidermolytic Hyperkeratosis with Linear Epidermal Nevus . I will never, ever forget those first few hours after leaving the specialists office who diagnosed her. As things slowly settled into my brain it moved into weeks and months of anxiety. I would close my office door of my new job and just cry. As if it wasn’t hard enough to walk down those halls every time I needed to get a patient and face some of the people who had made me so uncomfortable, I now had to wipe away tears and gather myself enough to not look like a complete mess. I would repeatedly tell myself, I am sad, and that is ok. At that point in time it was so new and the extent of her lesions were unknown. I had all of these anxiety’s; would it take over the whole left side of her body? Would she be embarrassed? Be made fun of? Would others see it as gross? If she got cancer, how would I know? What if I didn’t catch it in time? Will it be painful? Make her sad? Will she become depressed? Will she someday feel the sadness I feel now? I was consumed and scared. Until I figured out how to move on from that dark place where I cried nearly non-stop, at a job where I was already so alone, those anxieties remained. It was awful.

Eventually I found my footing in both World’s, I actually received a few apologies for the things people had said to me and massive compliments about sticking it out, one of them happily admitted that he was wrong for how he felt and the things he said,  I thought that was big of him to share but I have never forgotten the one person who accepted me from day one, Dr. Pavan Somusetty. I have never forgotten how he made me feel, had I not had him on my side, I certainly wouldn’t be there now,  no intentions of ever leaving, bossing people around, completely confident in my work and considering most of my teammates family. As time went on I also found my way with Mermaid’s diagnosis. Over the years we have openly shared our journey and been blessed that her nevus has not spread to the extent it could have or might still, we maintain it well and despite the controversy around the possibility of childhood kidney cancer, we are just about a year away from wiping that off the worry list all together. For now, we are both happy, healthy individuals, my initial feelings about her diagnosis often get lost in our daily lives, until that night. Our fellow Nevus owner who sought me out as a safe place to share her fears took me back to that place. That place where even though Mermaid is small and healthy now, Icouldn’t help but think again if that be the same story later? Will she one day be reaching out to someone in this very same way? Every case is different, some are simple, some complex, none of us can completely identify with another’s road, but we can agree that the more extensive cases have a very high potential to cause social out-casting, pain, anxiety & depression. That night I was reminded of my original fears and I remember how alone I felt with those fears, so I listened.

Just as I did that night, I will to continue to put this out into the world for everyone; if you are struggling, feeling sad, lost or a potential danger to yourself, reach out. Your identity and personal struggle will remain private. I will do my best to be a good listener, share what I have learned and attempt to find you resources in your area. I am happy to say that those suicidal thoughts and feelings this individual was having have passed, for now, but that may not have been the case if they remained quiet. Holding that strength to say things out loud allowed them to process their thoughts easier, and all I had to do, was listen.

I can’t tell you how many times a week I hear someone on the other end of the phone say “you probably didn’t need to know that, but thanks for listening” or asking me if I have just a few minutes for them to vent, and I always will. Where my sadness surrounding Mermaid’s diagnosis during a difficult transition to a new job never left me suicidal, it certainly left me empty until I found a healthy way to change that. I am not immune to suicide. As I took in all this person’s fears that night and reasons it would be easier to just end it, I flashed back to when I was much younger, to a classmate in the 7th grade that I use to walk home from school with sometimes, who took his life in the family home just a block away from me. I couldnt process the magnitude of that at 12-13 years old,  I thought about another friend that took her life a few years ago leaving behind a husband and children and I thought about another one of my very closest friends who was supposed to be at my house for game night but died in a car crash chalked up to being under the influence by authorities, though some people claim it was completely deliberate, and I wondered, was this all they needed? Someone to listen, without judgement? To tell them it was ok? So I continue to listen.

I’m glad I had someone on my side when I made the leap to Mental Health, someone who believed in my value adding to my decision to stay because the department and their cause are a piece of me now. I have learned so much about myself and others as a result of working in this world. I have learned that being sad, is ok, it’s normal. It doesn’t mean I am depressed or suicidal, it simply means, I feel.  That talking about the things making us feel that way opposed to hiding them, is refreshing; but more so, that suicide can be prevented.

The person who told me to “say it out loud” left this world less than a year ago, changing my life forever. The person that listened to me all those years, let me be angry when I needed to be, distant when I was incapable of closeness and taught me to say out loud that I was sad, is no longer here. She occasionally struggled herself and where she was outwardly happy, inside she was a bit lost herself, despite her own thoughts she continued to be there for me and I will never forget how she changed the way I feel. Just as I will never forget how that nurse in my initial interview all those years ago at the beginning of my career made me feel, like I wanted to be a part of that world with her, so I made the leap. A few years ago this individual decided she could no longer handle her own struggles, and took her own life. I will never forget that in a time when I was going through something so personal and difficult, while basically being told I didn’t belong, that one Physician made me feel welcome. I knew he was special from day one, his patients know he is special now and I am so proud to say that tomorrow, you can tune in to hear him yourself.

Entercom radio has put together a nationwide broadcast called “I’m listening” that focuses on breaking the stigma attached to talking about mental health. The radio program will be live at 10 a.m. ET on Sept. 10 for a two-hour, commercial-free live broadcast, featuring personal stories and a call-in number during the show so listeners can share how they’ve been impacted by suicide.  Metallica, Halsey, Bleachers and Nirvana’s Krist Novoselik will be among some of the people speaking and sharing stories.

The conversation will be led by BJ Shea from KISW-FM in Seattle and will offer guidance and resources from Christine Moutier, M.D., Chief Medical Officer of the American Foundation for Suicide Prevention; Dr. Ursula Whiteside, clinical psychologist, CEO of NowMattersNow.org; and my friend, Dr. Pavan Somusetty, Psychiatrist and Assistant Chief of Mental Health for Kaiser Permanente Northwest.

To read more about the broadcast or find your local station airing it; click the link below:

http://www.imlistening.org

We have all been effected by someone with Mental Health issues, perhaps you have experienced a loss, been around another person you were unsure how to help or heard someone’s story that triggered your own dark places, whatever your connection, it’s time to speak up and let others know you are listening.

Tomorrow morning, at 7am my time, I will be up with a cup of coffee tuned into 94.7 for the broadcast. I invite you all to join me for that cup of coffee from the comfort of your own home and just listen. Take in the stories, the advice and remind yourself to be open, that mental health is real. Together we can bring it to the forefront of healthcare where it is treated with the same social acceptance as the common cold. A better understanding of one another.

Listen for Pavan’s interview and if you have thoughts, pop on here or my Facebook and share them.

To the ones I have lost and mentioned, thank you for being a part of my story today, you are forever in my heart.

Looking forward to our Sunday morning coffee date!

Thanks for walking with us today,

Mermaid’s Mommy

It never fails, each and every time I think I have this whole nevus World figured out; another piece of research comes out, a tidbit shared from Physician to patient or some publication from a Scientist pops up that was never even considered – changing everything. Or does anything change at all??? That’s where this world becomes tricky, the information varies and sifting through facts vs theories is often a task. To boot, medicine is forever evolving and new discoveries are happening all the time, when and how those discoveries are shared is not uniform. Depending where you are in the World can change how much or how little you know.

Either way, I think everyone can agree that we all want research to continue, a lot of us want to be a part of it, having that chance to help move advancements along gives us a sense of purpose and we all want a new little morsel that gives us hope for treatment. I wish that what I was going to say next was…  GUESS WHAT?!??! I have ALL of those things for you today! But I don’t. I DO however have a few updates to some recent conversations. So let’s get to it!

I continue to hear people state that they attempted to join a study we were referred to by the Amazing Lauren (founder of the best support group ever) without resolve and I was perplexed. On your behalf, I reached out to resolve this. I realize some people are new here so I am going to take a few steps back and explain WHAT this study is first.

 Dr. Keith Choate at Yale University School of Medicine/Yale-New Haven Hospital is running several research studies for people with skin disorders. One of them is specific to ILVEN. The goal is to find out how inheritance of specific genes causes some people in families to develop skin diseases. This is done by analyzing DNA molecules. Some studies may take years to complete and they may never find the true cause of the mutation, but if they do, they may be able to develop better tests and treatments in the future.

To participate you will be required to release your last biopsy. You will need to sign a release at the medical facility holding that biopsy allowing them to send it to Yale to be examined. It includes a background on the Nevus owner. Parental consent, family skin conditions, symptoms, origin, PCP & Dermatologist information, Grandparents information and other medical history of the family. This is fairly lengthy. Next & lastly it requires a biological sample. Saliva can provide much of the same genetic information as a blood sample so depending on your location and whether you have recently had specific blood draws, they may ask for just one, or possibly both to obtain the patient’s DNA.

The DNA will then be screened for mutations and stored indefinitely for future use.

Sounds pretty cool right? Well it IS cool! What’s even more impressive is that we went into this study with the sole intentions of giving our information and truly never hearing anything again, but to my surprise, in the 2 years since we participated we have had multiple phone and e-mail conversations with Dr. Keith Choate himself. He is so kind and informative, just recently he let me know that they were just working on Mermaids sample and may potentially be able to use us in a separate study as well. Being that Dr. Choate has always been so receptive to us I took a shot and sent him an email asking if the study was still accepting new participants. My understanding is that many of you have inquired without response. Keeping with his reputation Dr. Choate personally picked up the phone and called me.  We had a quick chat about Mermaid, the study and another small tidbit I will share in just a moment. The long answer is YES, the study is still ongoing, in fact, he needs people more than ever! There were a few factors in the lack of response, one was due to some staffing issues creating an abundance of work for people not necessarily equipped to handle to volume of requests and bigger than that was the funding. Research needs money, when it’s lacking, research stops from growing. GREAT NEWS… the NIH just funded this project big time. That means it’s time to get involved! Opposed to using the old contact information Dr. Choate asked me to tell everyone to email him directly and he will get you started.

So here is a simpler view of the study and how to get involved. 

ILVEN study: 

Who? Dr. Keith Choate at Yale University School of Medicine/Yale-New Haven Hospital

What? Research how the inheritance of specific genes causes some people in families to develop skin diseases by analyzing DNA molecules in hopes to develop better tests for diagnosing and potential treatment.

How? Email:  Keith.Choate@yale.edu

Why? Because you can! 

Keep in mind, you may never hear anything at all. You are agreeing that Yale may use your samples solely for research and that is all. If it is medically necessary, they will contact you. Please limit the email’s to inquiring about the study, he has been so open and kind that we do not want to burn this bridge as a contact, trust me – if there is a need, he will get in touch. Yale covers the cost of shipping all materials back. If you want to see pictures of what the paperwork or specimen tube looks like you can click my link below from when we submitted our package. Now get to it! The more the merrier and we NEED your DNA! 

https://mommysmermaid.com/2015/08/28/signed-sealed-delivered

Here is the other small tidbit. While on the phone with Dr. Choate I wanted to inquire if he had any information on a potential break through in the past few weeks in the UK. It’s a long shot but when the opportunity presents, I try. It was mentioned on a forum that a Physician in the UK had just made some break throughs in the past two weeks. That this specific Physician was able to isolate 2 specific genes that may be responding to treatment. This was all still in the research phase but gave a lot of hope to our small little Nevus world. 

Dr. Choate first stated that this specific Physician is a brilliant scientist and absolutely has the capabilities to do this, but did he know anything specific to what I was speaking? No. However, he did inform me that he recently gave a talk that included information on the mutation that causes CHILD syndrome and it’s possible, it is related to this. CHILD syndrome (an acronym for congenital hemidysplasia with ichthyosiform erythroderma and limb defects)  is an inherited disorder, affecting primarily women, that is characterized by ichthyosis-like skin abnormalities and limb defects on one side of the body. The skin is usually dry, itchy, red and scaly and it comes with a list of potential side effects. Sound familiar? A little like ILVEN? That’s because the two can be misdiagnosed as the other. They both have swirled linear patterning, however, in CHILD syndrome the mutant gene is in every cell, but that gene is active in only parts of the body. The gene in CHILD syndrome is NSDHL, which is related to ones cholesterol. Their research has found that those with CHILD syndrome may benefit in a treatment combination of topical and oral cholesterol medications. It’s interesting for sure, we all know how easy it is to be misdiagnosed but the important note here is that ILVEN is NOT CHILD syndrome. 

I appreciated the information either way and found it fascinating that the two were so similar, it was also a good reminder that Dr. Choate works with all kinds of genetic disorders, not just ILVEN; but I still wanted to try to get an answer to these 2 mystery genes that had been mentioned. I’m sure you can guess what I did, I reached out to the UK of course! I really expected a dead-end but to my surprise, I got a written response from the Physician named in this work. The response will explain why I am protecting this individuals identity. As I touched on above, research costs money. No money, no trials, no publication. If an individual seeking funding from larger or national organizations spills the beans about their findings to the public, the funding could be cut, or in some cases, not backed to begin with. In this particular case I was informed that currently, they are lacking funding. 

Without funding the response I received was guarded, they informed me about the lack of funding and alluded to a potential compromise if information shared in private with participants or those inquiring were to be made public. I was told point-blank that there have been no recent breakthroughs in the past few weeks. That over a few years there have been SOME but nothing ready to share or be published. The Physician was kind and in fact, offered to share the publication with me when funding allows that to happen potentially in 2018. I did respond asking if I could quote a few things mentioned or share their name but that was not spoken too. So out of respect for the Physician I will not share their name or personal information.

My take away is this – Yes, there is research happening in the UK with a brilliant scientist. With more information and funding there may be specifics to share next year about findings that occurred over the past few years. In the past few weeks there has been no new movement. As much as I would like to tell you that I confirmed 2 specific gene types associated with ILVEN are currently responding to experimental treatment, I just can’t. I will continue to dig, keep my ears open and as always – share anything I come across. 

I pride myself in presenting the most accurate facts and I hope you have all placed your trust in me, I assure you I spoke directly to two very large figures in the US and UK performing this work. If you have something to add or know another source I can follow-up with, by all means, send it my way and I will dive right in. I apologize for the delay in response with some of this information but I wanted to make sure it was as accurate as possible. 

So tonight, I leave you with this… reach out to Dr. Choate and inquire about participating in the study, tell him we sent you! Know you are doing your part to further education and research and who knows? Maybe this time year I will be sharing some exciting new treatment from the UK! 

As always… Thanks for walking with us! 

Mermaid’s Mommy