Help Lexi Overcome the Dark Shadow of OCD

Suicide is the second leading cause of death for young people ages 10-24.

LGBT youth are more than four times more likely to attempt suicide than their peers.

My name is Gina and I am the mother of three amazing children. Two of my children have suffered from a severe mental illness which has led to thoughts of suicide. 

We do not want our child to be just another statistic.

We thought we knew what mental illness was but we really had no idea until OCD invaded our lives. 

OCD, Obsessive Compulsive Disorder, can range from mild to severe. Moderate to severe OCD is severely disabling as the obsessive thoughts and compulsive actions consume endless hours, robbing the person of living day to day life.

My older daughter has overcome severe obsessive compulsive disorder yet as a family we struggled for years to get her the help she needed. It robbed her of the innocence of  childhood.  My older daughter is 21 now and is employed and living on her own. Yet, she has large gaps in her memory of her childhood during the time that she most suffered. For my younger daughter, severe OCD is still a real issue. 

Our bouncing bundle of joy arrived in our lives, January 8,2009 and she completed our family of 5.  She began walking before 10 months, likely to keep up with her older siblings who are 7 and 11 years older than she is. At the age of 4 she taught herself to play chess with an Usborne Chess picture book.  She was riding a bike at 5 and also quickly earning belts in Tae Kwon Do.  

Creative, imaginative and full of energy she has developed a love of digital art, photography, bird watching and is gifted with a multitude of computer skills. 

Despite all her talents, she was silently suffering inside.  She had told us at age 2 that she was a girl despite the label on her birth certificate. It took us years to catch up with her and for all of us to come to acceptance of her true gender identity.

She  experienced unusual stress as a toddler including her older  sister’s sudden onset of OCD. And the stress of being without her primary caregiver (me) when her father suffered a nearly fatal heart attack. 

From a young age, she would obsess about the placement of her large stuffed animal collection with the need to repeatedly count them.   She also had a need to have things just right as well as several irrational fears. In some ways her issues looked  similar to her older sister and yet different. Someone with OCD realizes that these obsessive thoughts and compulsions do not make sense and yet they feel powerless to change because of the insurmountable fear that something bad will happen.

She has since been diagnosed with OCD, general anxiety, social anxiety, depression and gender dysphoria. Yet, she is so much more than those labels.

The standard of treatment for OCD includes Exposure Response Prevention (ERP) therapy and/ or medication.  Our older daughter was able to overcome her OCD with a qualified therapist and medication.

You would think that two parents who have gone through the challenges of OCD, would know what best to do when a second child showed signs of OCD.

We thought we knew. We found a therapist and a psychiatrist and went to a developmental pediatrician and Occupational Therapy. We sought to utilize natural and alternative practices before resorting to psychotropic medication for our kids.  We took out any possible offending foods like gluten and dairy as well as artificial food additives.  We added supplements like fish oil, vitamin D, inositol, magnesium, digestive enzymes, amino acids and probiotics. All of those things have been helpful but they have not been enough.

She does have a therapist who specializes in gender dysphoria yet we have known she needs additional therapy to specifically address the OCD. 

In 2021, we found NBI in Weston, Florida and they have a treatment program specializing in complex cases of anxiety and OCD. We met online with  a therapist from NBI.  We paid the out of pocket fee for an initial consultation, $400.  Yet, we were unable to come up with the necessary funds to attend this program.  After continuing to search for something more local since that time, we believe that  NBI may be the only solution for our daughter despite the distance and cost.  We need both the funds to have a place to stay during her treatment which could be up to 3 months and the cost of the program which is estimated to be $12,000 per month.  

We have tried some online therapists since 2021 and yet it was not enough to address the severity of her OCD. Even with a qualified therapist, it is a time commitment for us as well to follow through with the ERP therapy.  All of these efforts have been at a great cost to our time and income. 

In the fall of 2022, her symptoms got worse.  The psychiatrist changed her medication to see if  a different SSRI medication would be more effective.  Despite initial improvement with the new medication, things quickly got worse with  increased agitation, outbursts of rage and anger that led us to the hospital ER multiple times and even to being admitted to the behavioral health unit. Yet, even in the hospital, there is no regular individualized  therapy and there is not a qualified OCD therapist.  

 It has been heart wrenching and emotionally exhausting to hear our child say that she feels her life is useless and wants to die. .  We called 911 because we feared for her safety and we watched her be handcuffed by police.  Despite how we have experienced these events, we know it has been that much worse for our daughter. 

We have exhausted all efforts to find treatment in NC as well as treatment covered by our insurance.  It is time for us to move forward to get her the intensive treatment that she needs. 

We need financial assistance for her to attend the intensive OCD program at NBI. 

We are even considering selling our house to be able to pay for her treatment. 

Our daughter is 14 years old and we want so much more for her life than the suffering she has been experiencing for most of her life.  We see her shine when she is online with friends, taking pictures of birds or explaining a complex concept to us.  She deserves to have more positive moments in her life and the ability to overcome her challenges. 

If you have the means to help us and also the ability to share our story, we ask for your help.

I find inspiration in music and every time I hear this song, I sing it to my daughters. 

I wish someone would have told me that this life is ours to choose
No one’s handing you the keys or a book with all the rules
The little that I know I’ll tell to you
When they dress you up in lies and you’re left naked with the truth

You throw your head back, and you spit in the wind
Let the walls crack, ’cause it lets the light in
Let ’em drag you through hell
They can’t tell you to change who you are
That’s all I know so far
And when the storm’s out, you run in the rain
Put your sword down, dive right into the pain
Stay unfiltered and loud, you’ll be proud of that skin full of scars
That’s all I know so far
That’s all I know so far

So you might give yourself away, yeah
And pay full price for each mistake
But when the candy-coating hides the razor blade
You can cut yourself loose and use that rage

I wish someone would have told me that this darkness comes and goes
People will pretend but baby girl, nobody knows
And even I can’t teach you how to fly
But I can show you how to live like your life is on the line

All I know so far, Pink

Childhood Mental Illness: Things I wish I had said

Things I wish I had said and things that need to be said

What would you do if this was your child?

No, OCD is not keeping things in order.

Do you have clinically diagnosed OCD?

Does your need to have things in order take hours of your time during the day?

Does it interfere with your daily life functioning, because if not, do not tell my child that you have OCD and that it is normal.

Obsessive Compulsive Disorder is a DISORDER

Obsessive Compulsive Disorder is a mental illness where they brain is not functioning properly

Obsessive Compulsive Disorder is an illness and not an adjective

Obsessive Compulsive Disorder is as real as juvenile diabetes and cancer and can be deadly

Suicide is the second leading cause of death in children ages 10-14

De-Escalation techniques. are essential in a crisis situation where someone is angry and violent

Observing officer, did you see the difference in my child’s behavior with the officers who used those techniques a week and a half ago compared to. the officers standing before you and are not following that protocol but instead are in dad mode.

Why are you using the safe room as a holding cell for my child?

Why the hell does your “safe room” have concrete walls???

Why is our system so broken that my child has been. back to the emergency room more than 5 times in the past 3 months.

Why won’t anyone help my child?

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis given to children who have a dramatic – sometimes overnight – onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction.

I copied that statement from Stanford website.

Why does my child’s psychiatrist not recognize PANS?

Why won’t anyone listen to us?

Why are my child’s doctors ignoring these signs and symptoms?

Why am I the only one who sees my child calling out for help?

Why was the police officer so confrontational with my child yesterday and why did he tell her that she is 14 and therefore needs to know better?

Why do people expect kids and especially teenagers to act like adults but do not treat then like adults?

Why do people not realize that the human brain and its development of higher level cognition does not fully develop until the late 20s.

Why can’t people understand that a 14 year old brain does not function like a 25 year old brain?

Why do people not recognize that my child has post traumatic stress disorder?

Why do the professionals not see that if my child has PTSD that she is triggered by different situations and you can not talk her out of it?

Does the medical community see PTSD as a behavior disorder?

Why is the psychiatric unit of the hospital called behavioral health?

Why are you telling my child that her behavior is her fault and that she can control it if she just chooses differently?

Why do we treat children differently if they have a psychiatric diagnoses vs a “medical diagnosis”?

Why are psychiatric illness not considered medical illnesses?

Who decided that the brain function is seperate from the body?

Who decided that because an illness manifests with behavior changes then it needs to be treated differently?

Why do the people who are put in the position to help children with mental illness have little education in mental illness, in psychiatric disorders and how the brain functions?

Why is getting the specialized treatment that my child needs cost prohibitive?

Why am I not able to search for the Charlotte PANDAS/ PANS treatment center?

Why is there not funding to assist people who can not afford the high cost of specialized centers?

Why is healthcare in the United States tied to having the financial means to get the help that is needed?

Why are some diagnoses treated without regard to what people can pay and others are not?

Why is your child with cancer more important than my child with severe Obsessive Compulsive Disorder?

Why do the professionals not recognize that they are failing to treat people and diagnosis people correctly?

Why should my child suffer because I do not have the financial means to take them to a specialized clinic?

Why won’t anyone help us?

Why won’t anyone help my child?

Tuesday Train Ride: The value was so much greater than the cost

I took a spontaneous trip back to Raleigh with my daughter last night

She was home for just one night

For a weekend after Thanksgiving

For time with family

It wasn’t enough time

It wasn’t enough time for her to recharge

It wasn’t enough time for me to love on her

To fill her cup

Trying to get on the road to be home by 8pm

Reluctant to leave

Leaving on a Monday around 4:30 pm 

So much traffic…

I sat in her room 

As she packed up to head home

Reluctant to leave

Leaving on a Monday around 4:30 pm 

So much traffic…

I sat in her room 

As she packed up to head home

I listened to her

I was a shoulder to cry on

As she vented and stressed about returning to her place

Hugs

Then, I had an idea…

The train!

In 30 minutes I managed to:

Locate a train for the next day

She could drop me off on her way to work

I could take the 10am train home

“But Mom, I have to leave for work by 8am”

I can hang out at the train station

It’s a beautiful train station with comfortable places to sit

I had taken a train back home several months ago

It was a Friday evening train

It was crowded and my first time ever riding 

An Amtrak Train

Tuesday, mid-morning

That should be easy!

I packed an overnight bag

Last minute trip

No time to worry

Limit my luggage to carryon bag and back pack

I was focused and got it done

My husband got food together for us

We loaded her car and were on the road at 5pm

Half a tank of gas

“I got home on half a tank, it should be enough”

I had a feeling we would need gas

She talked and I drove

Driving my old civic

The car we gave her when her Subaru became unreliable

Lively and engaged in conversation

Much different mood than an hour before in her room

Low gas warning light

She found a station with low price with Gas Buddy

As I filled the car with gas

A woman in a red Camry asked me for help

She was lost and out of gas

She wanted directions

I did not know my way around

My phone!

I used my navigation app 

To enter the address of where she needed to go

I read to her what it said

She looked lost and confused

“Please help me” she repeated

I asked my daughter to write down the directions

She asked for a few dollars for gas

I dug in my wallet knowing I had no cash

Between the two of us, we only had coins

My credit card!

I offered to fill up her car with some gas

“Thank you”

She was so grateful

She was parked too far from the tank 

And parked with the wrong side facing the tank

She struggled to drive between my car and another

To turn her car around to pull up to the tank

I wanted to offer to drive the car for her

I chuckled at the situation

“Are you laughing at me?”

Amused by the situation and happy

Happy that I could help her

I told her I wouldn’t have helped if she had been a man

And she understood and agreed

Happy to help her out

Knowing her feeling of being lost

And out of gas

I had been in a situation as a 23 year old

At night driving home without my wallet

Turned the wrong way and was so low on gas

It was 1993 and I had no cell phone

I imagined I would need to stop at a gas station and beg for a dollar to fill up my tank…

Wow

I did not have to stop that night

I made it back to my apartment

Here I was almost 30 years later

Helping someone else in a similar situation

My daughter and I were happy that we took the time too help

I heard her ask someone else for directions as I filled her car

She was headed to the hospital

I was even more grateful that I was able to help her

She had found someone who would help her

To let her follow them to get her back on the right road

To get to the hospital

I never asked where she was going and why

My daughter and I enjoyed time together at her house

Watching our favorite TV show

And then off to bed to get up by 6:30 am

She has a spare room in the house she rents with a friend

It has been convenient for us to visit and stay with her

It feels so good to be there for her

When she needs us

To spontaneously pack a bag

And drive her home

Drowning in Tears: Feeling my feelings and moving through them

Last night, I was very upset and so I went to my cozy chair in the basement where I write. I curled up with a blanket and my “Sad” playlist, adding more sad, sappy songs from the 70s.

I brought my crochet bag with me. I crocheted the blanket I have been working on for my nephew’s birthday. I crocheted and cried and got lost in the music and lyrics.

I realized it has been a long time since I have allowed my feelings to flow like that. Bottled up feelings came pouring out, anger, resentment, frustration, sadness…

My mind was flooded with so many situations that have bothered me over the past several years. I felt very alone at the time and rejected. I felt like I was being swallowed by my feelings. I was in the flood of tears and sorrow like floating alone in the middle of the ocean, out of sight from land.

I felt ignored by my partner, my best friend, my spouse. Yet, I wasn’t ready to accept anything from him. Looking back on it now, I see that I needed to stay in my feelings and allow them to be really be felt. I curled up and fell asleep for a short while. He came downstairs around 11:30, tapped me on the shoulder and said, “You’re falling asleep. It’s time to go to bed.”

I didn’t want him or anyone telling me what to do. I was awake when he came down and I know I had fallen asleep. I had intentionally set my crochet down and curled up to sleep because I was exhausted by my feelings.

I did get up because sleeping on my chair, as comfortable as it is, is no way to sleep. I wanted to be in my bed with the covers over me. I just didn’t want to interact with anyone. I had my earbuds in the entire time, lost in my music, comforted by my music. I got ready for bed and climbed in with my ear bud still in one ear as I lay on my side to sleep.

I did not fall asleep right away. It was late and our 12 year old was still awake which bothered me. It was almost midnight and I worried she was having a flare up of anxiety and worried how he would handle it. I took out my ear bud, heard talking but not the words and decided it was calm. I lay there partly wanting him to approach me and give me a hug, apologize.

When I was curled up on my chair crying and crocheting, my 19 year old came down the stairs several times doing her laundry. She looked over at me and I looked up. She put her arms out and without words, let me know she would like to give me a hug. I still had my earbuds in listening to my music. She came over to me and gave me a big hug.

“Thank you” I told her

And she went upstairs without a word.

I felt seen and heard and loved in that moment.

I realized that was exactly what I needed. And it made me cry even more. Tears of joy and pain. Feeling proud that I had raised this amazing young woman and grateful that she understood. She understood what I needed in that moment and gave it to me without judgement and in the way I needed in the moment, without words.

When I am depressed, as in experiencing major depression, I do not curl up in a chair and cry. I may spend moments curled up and alone, yet for the most part, I feel numb and detached from my feelings. I distract myself from my feelings and at times even see that. Knowing it is too painful to feel everything that I am feeling and that I still need to function. I need to function enough to work to bring in income to take care of my family, to be sure they are fed and attended to with their basic needs.

I disappear from myself and engage in avoidance which usually looks like me lost in a game on my phone or binging on tv shows.

Last night, I did it differently.

I was upset at my husband and unhappy with how an argument had ended, how the entire conversation had transpired. I choose to be alone, listen to music and work on a project I was eager to complete. I withdrew to my safe space, my personal space I have created for myself. As I cried and crocheted, I realized I needed to let these feelings out. I got lost in how alone I felt yet looking back now, I see I needed that.

Today, I woke up not knowing how my day would proceed. I showered because I never did that yesterday and wanted to feel fresh. I was happy that I woke up while everyone was asleep. I needed more alone time to process and in order to move forward.

I decided to step outside on the porch like I have done regularly over the past week or so. It is my new morning routine, a meditation and quiet reflection time standing on my porch with the eastern sky view of the sunrise.

I stood on the porch, listened to my meditation song and watched the beautiful red and purple colors of the sunrise on this cold, crisp, January morning. I was deliberately choosing each next step that I took. I fed the outside cats, I had made my tea. Standing on the porch, I decided I needed to take a walk and what a wonderful morning to walk.

I needed to express my feelings outwardly to release the intense emotions with movement of my body. Flipping through songs on my iPhone, I matched my walking pace to the songs. I reflected over thought provoking songs and I danced and sang with empowering music. It felt so good to walk as I realized how much I needed to take that walk.

I am the one who tells my children that when their brain feels stuck either with depression or anxiety, that getting out and moving their body is so important.

Moving helps the brain to move out of the anxiety and getting outside helps to ground ourselves and to center ourselves. Walking or exercising or just moving outside is brain food. Exercise for the brain and body which is one of the best things we can do for our mental health.

Now, I write.

Writing is meditation for me. Writing is who I am. When I am writing, I am expressing myself, enabling myself to be the grandest version of the greatest vision every I held about who I am.

Find your outlets for your feelings. Find what works for you. When you can take care of yourself in this way, by feeling your feelings and moving through them with intention and reflection, you give your children the greatest gift.

Our children learn through our example. In order to help them accept and process their feelings, we need to take care of ourselves and this includes feeling our feelings and allowing them to see our experience.

We can create a safe space in our homes for feeling feelings. We can give our children a time when they can let out their frustrations without any judgment from us. We empower our children when we empower ourselves.

In order to move through feelings, we must first step into them like entering the water to swim to the other side.

2021: January 18

On this day of your life, Gina, I believe God wants you to know … … that there is a Chinese proverb: Great doubts deep wisdom. Small doubts little wisdom. Never stop doubting, never stop questioning, never, ever assume you have all the answers. Having all the answers kills the question itself; renders it lifeless –and you, too… Keep looking, keep seeking. Never, ever find it all. Because when you find it all, you deny that there is more. And there is never not more.

Neale Donald Walsch

“Seams like I should be getting somewhere, Somehow I’m neither here nor there. Can you help me remember how to smile? Make is somehow seam worthwhile. How on earth did I get so jaded?”

Soul Asylum, Runaway Train

Listening to my Writing Inspiration playlist, Pushing myself to return

To return to where I belong…

Sitting at a keyboard and going within

Tom Petty knows just when to show up

Learning to Fly…

I turned 50 October 15, 2019 and it was a grand celebration at the beach with my family with a pre solo- celebration in September with my first ever, solo beach trip…and not my last.

Somehow, it is 15 months later and shit happened

Weight gain

Global pandemic

lack of writing

Obsessive Compulsive Disorder flare up in my child

work changes

Less hours, then more, then less… then more…

Stuck treating patients in their rooms, unable to use the large, wonderful therapy gym

Unemployment checks… that was nice

Who knew the underemployed could collect?

A Pandemic changes everything

Everything is always changing

But pandemic changes suck!

I don’t need more quality time with my family!

I am not living in this pseudo reality of “wow, how wonderful to have this “Excuse” to spend more time with my family and focus on what matters!!!! #$%&

I have made choices to allow me to have more time with family

Financial choices, work choices, living in a small house and driving aging cars…

My husband and I have made choices for 23 years to have quality time with our kids and to be there for them

We made those choices years ago

We didn’t need some God-forsaken pandemic to remind us what is important!

Maybe the pandemic helped you to refocus, I respect your path

But for me, it has sucked!

My youngest child has social anxiety and being around others is more challenging than academics.

Maybe today, after all these months, I can see that they have had more time online to grow friendships and have made strides in understanding friendships and this might help them in the near future to connect in person with others. I can hope…

I found myself loosing the desire to go anywhere

Content to stay in my bubble of work and home

In the beginning, I remember being excited to go to the grocery store, I choose to go rather than my husband, so glad to get out!

But that was months ago…

I have let him do nearly all the shopping.

I work my part time irregular hours at the nursing home.

And I stay home, going on necessary zoom or video calls mostly for doctor visits, for me and my kids.

Here is is, almost one year past the initial pandemic lock-down

The self-absorbed haters tried to take over the Capitol

We worry about the future, not only for ourselves, but for our kids

The optimist in me, knows somehow this too shall bring great change

All of it, the political strife, social unrest, injustice and this crazy virus and how the world has responded

Yet, I just want to scream ouch fort to the world…..

What the F#$%!

I had way too much shit on my plate before March 2020. before November 2016….

Life has to get better, somehow…

All I know to do is to write

Writing to find my inner peace and my own truth

I leave you with these words…

When the day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang on

Don’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on

‘Cause everybody hurts
Take comfort in your friends
Everybody hurts
Don’t throw your hand, oh no

Don’t throw your hand
If you feel like you’re alone
No, no, no, you are not alone

If you’re on your own in this life
The days and nights are long
When you think you’ve had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
And everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

No, no, no, no you are not alone

Challenges to Change: we can miss the writing on the wall

Inspiration happens in many ways.

I often listen to music as I write and when a song captures my attention, it sparks something within me, and I begin writing, finding my own meaning in the words.

Growin’ up you don’t see the writing on the wall
Passin’ by, movin’ straight ahead you knew it all
But maybe sometime if you feel the pain,
You’ll find you’re all alone everything has changed

In my journey of self discovery, I have been reconnecting with old friends.

This time, I met up with someone I had known for years from when I began homeschooling. We first met about 14 years ago. We saw each other when our kids had shared interests and therefore we found ourselves at the same events. This is typically how I have met people and have made friends over the years of homeschooling my kids. We knew each other and became Facebook friends yet never spent time together as friends. Life circumstances connected us more, yet our connection remained virtual.

You know how you meet someone and feel an instant connection?

I knew I liked her from the time I first met her, yet our paths never led us to getting together with our kids.

We got together and what I intended to be a casual meet up turned into a 4 hour conversation with us discovering we had so much in common, our lives had taken similar paths and we found ourselves sharing things we had never shared with anyone before.

We both talked about becoming a mom and how it changed us.

I always wanted to be a mom.

I remember looking forward to the day when I would have my own daughter, and imagined what she would be like.

I remember going to college with a new passion for this field of study I had chosen, yet I always envisioned that I would work for a few years until I had children.

I found myself enjoying being an Occupational Therapist and happy with the field I had choose. When my husband decided he wanted to go into business for himself as he was tired of the corporate world, we talked about having children, and I recall telling my co-workers, it doesn’t matter who stays home with the child. Dad staying home with the child is just as good as mom.My co-workers with children disagreed.

After 3 1/2 years of marriage and a year of my husband left his job to grow his own business, our first child was born.

I didn’t have that instant connection with my child the way I have heard people describe. I loved him from the start and was so excited to be a mom, yet it took me time to develop the sense of a strong connection.

At the end of my twelve week maternity leave I found myself saying,

What have I done? I don’t want to leave my baby and go back to work!

Life changes us

We talked about how if someone had told us years ago that this is what our life would be like now, we would never have believed them.

Play the game you know you can’t quit until it’s won
Soldier of only you can do what must be done
You know, in some ways you’re a lot like me
You’re just a prisoner, and you’re tryin’ to break free

I can see a new horizon underneath the blazing sky
I’ll be where the eagle’s flying higher and higher 
Gonna be your man in motion
All I need is a pair of wheels
Take me where the future’s lying St. Elmo’s fire 

Burning up don’t know just how far that I can go 
Soon be home only just a few miles down the road
And I can make it, I know I can
You broke the boy in me, but you won’t break the man

I also enjoy discovering why a song was written and the author’s meaning.

In a search for the meaning for this song, I found this information on song facts

David Foster and John Parr wrote this song specifically for the movie St. Elmo’s Fire, but the song itself is about a Canadian athlete named Rick Hansen, who was paralyzed from the waist down after a car crash when he was 15. On March 21, 1985 Hansen began his “Man In Motion” tour, traveling about 70 miles a day to raise money for spinal cord research. At first, Hansen had trouble getting media attention and donations, but when this song was released with the movie in June, it became his anthem, and as the song rose up the charts, interest in Hansen’s journey grew. By the time the “Man In Motion” tour was completed on May 22, 1987, Hansen had put over 40,000 Kilometers (24,856 miles) on his wheelchair in 34 countries on four continents, raising $26 million. He became a national hero in Canada, where he is closely associated with this song.

How ironic

My children’s anxiety disorders and my own undiagnosed Bipolar Depression, paralyzed our family.

Now, my husband and I have created a business to help other people struggling in the ways that we did.

I am passionate about educating people on mental illness and in particular Obsessive Compulsive Disorder.

I have really enjoyed digging into this song because I found so much behind it.

St. Elmo’s Fire describes a weather phenomenon involving a gap in electrical change.

It is a phenomena that looks like dangerous fire, and is an electric charge, but in reality, it does not give you an electric shock the way lightening can.

Obsessive Compulsive Disorder, OCD, is a condition in which the brain tells a person that they are in eminent danger, when in reality they are not.

My life has had many challenges and twists and turns.

The unexpected challenges and changes in my life have led me to where I am now.

I now feel like I am being the person I was always meant to be.

And I am so excited to move forward in my journey…

I can see a new horizon underneath the blazing sky
I’ll be where the eagle’s flying higher and higher
Gonna be your man in motion
All I need is a pair of wheels
Take me where the future’s lying St. Elmo’s fire

I can climb the highest mountain, cross the widest sea
I can feel St. Elmo’s fire burning in me, burning in me
Just once in his life a man has his time
And my time is now I’m comin’ alive

Changes in Healthcare, Changes in Me

Twisted Sister sings to me as I research the history of changes in rehabilitation services under Medicare. The more I research, the more validation I am finding in my experience and opinions. And the more I feel the importance of speaking out…

We’ve got the right to choose it

There ain’t no way we’ll lose it

This is our life, this is our song…

I have worked in the “health care system” for over 27 years, known to many of my like-minded friends as the “sick- care system”.

My career has been taken over by government entities who have changed the reimbursement system for skilled therapy services for the second time in 20 years.

The insurance industry is the one who runs the show and now decides how long the patients need therapy services.

When I began my career, after graduating from a certified and well respected Occupational Therapy program at Elizabethtown College, part of my role as an evaluating therapist was/is to determine the need for skilled Occupational Therapy, set goals, monitor progress, and determine when there is no longer the need for skilled services.

I now have very little say in how long someone receives therapy services in adult and geriatric rehab under Medicare Part A services, at skilled nursing facilities where most of short term rehabilitation now happens.

Twenty-seven years ago, physical rehabilitation began at rehabilitation hospitals. Now, most people can no longer head from the hospital to an acute care rehab hospital, as the changes in PPS in 1999/2000 changed the criteria for admission to acute rehabilitation facilities pushing people to go for rehabilitation at nursing homes, with the new tittle of “sub acute rehab”.

Why did this happen?

From my perspective as an Occupational Therapist who has been practicing for 27 years and has lived through these changes, the mighty dollar has taken higher priority than quality patient care.

Sure, the people involved in establishing these changes, the branch of government now known as The Centers for Medicare and Medicaid Services, CMS, including the head of the organization who is appointed by the president, would argue that it is to stop fraud and to improve patient care.

On November 29, 2016, President-elect Donald Trump nominated Verma to serve as administrator of the Centers for Medicare and Medicaid Services, the Health Department agency that oversees Medicare, Medicaid, and the insurance markets.^[16] On March 13, 2017, the United States Senate confirmed her nomination in a 55–43 vote.^[17] One of her first actions was to send a letter to the nation’s governors urging them to impose insurance premiums for Medicaid, charge Medicaid recipients for emergency room visits, and encourage recipients to get jobs or job training.

Patient’s Over Paperwork:

Taken directly from the CMS.gov website:

Reduce unnecessary regulatory burden to allow providers to concentrate on their primary mission: improving patient health outcomes.

• CMS Administrator Seema Verma launched the “Patients over Paperwork” initiative in 2017, in accord with President Trump’s Executive Order that directs federal agencies to cut the red tape. This helps patients by allowing doctors and non-physician practitioners to focus on care instead of paperwork.

• CMS is eliminating overly-burdensome and unnecessary regulations and guidance to allow providers and suppliers to focus on their primary mission – improving their patients’ health.

• CMS is removing barriers to unleashing innovation.

• CMS is partnering with clinicians, providers and suppliers, administrators, support staff and beneficiaries to ensure we are focusing on the needs of patients.

I call “Bullshit!”

Suppliers and beneficiaries?

Is that code for health insurance companies?

I have MORE paperwork than I did 27 years ago and will have even more now with these new changes and have less time for actual patient care.

This is my favorite part of this information:

Our actions have delivered results

• Saved the healthcare system at least $5.7 billion through 2021.

• Eliminated at least 40 million hours of burden through 2021 giving that time back to providers and suppliers to spend with their patients and not on needless paperwork.

• Heard from over 2,000 clinicians, administrative staff and leaders, and beneficiaries through listening sessions and in-person visits throughout the country.

“Saved the healthcare system at least $5.7 billion through 2021”

Who have they saved $5.7 billion for?

THE INSURANCE COMPANIES!

And these changes both with PPS in 1999 and now in 2019 with PDPM have directly affected the lives of the healthcare professionals who provide these services.

There is a HUGE difference between rehabilitation services in 1992 and what is now happening in 2019.

I worked in an Acute Rehabilitation Hospital in 1992, my first job out of college. It was a great learning experience and an excellent facility. Sure, I hated many aspects of working for this large hospital system, yet I would not change beginning my career there. I left after three years to escape the strict schedule and stress of hospital policies.

I took a job in a Nursing home that had both long term care and “sub-acute care”, the new buzzword for rehabilitation services. My new job had flexible hours and a 35% pay increase. Yet, I soon found out that my role of being a skilled Occupational Therapist looked very different in this new setting and I had to spend less time being a skilled therapist and without the environment of a rehabilitation setting where the focus was on patient care and rehabilitation. And without all the necessary tools to do my job and the experienced professionals that I was surrounded by at my prior job.

I have been working in adult and geriatric physical rehabilitation since that time in various settings including nursing homes with “sub acute rehabs”, home health, and outpatient centers for assisted living and independent living residents.

When the PPS system was being developed, I agreed that there needed to be a change. Yet, the change was from one extreme to the other. The results were not better patient care, but less staff to patient ratios, a shift from quality of care to the number of minutes of therapy equating to a dollar amount, affecting not only the patients but also the staff whose job was to provide needed care for these patients.

Five years after I began working in nursing homes, I suffered a pay cut, reduction in benefits, and was shuffled to different facilities. My position moved from working 4 miles from my home with a 32 hour work week, hours reduced at my request to have time with my 2 year old child and still have full time benefits; to traveling to 2 different facilities in one day, traveling 147 miles round trip each day. I had an amazing boss at the time who negotiated some extra pay in addition to the standard pay for travel between the two facilities.

After traveling like this 5 days each week for a while, she then helped me to switch to working 4 days a week rather than 5 days to return to something closer to my “reduced 32 hour week”.

My other option, was to loose my job. Everyone was cutting staff. There weren’t many jobs to be found.

I spent 9 months searching for a new job. I eventually got a job offer for part time work in home health care which gave me more freedom in some ways but also evolved into traveling a larger area to see patients in 3 different NC counties, Stanley, Union, and Anson. I live in the corner of Mecklenburg county where it meets Stanley, Union, and Cabarrus Counties (see image below: Mecklenburg county is the pink county on far left)

Flash forward to 2019:

Over the past several months, everyone has been talking about the new reimbursement system, PDPM, Patient Driven Payment Model.

I wasn’t very worried about it, listening to my fellow therapists and co-workers “panic” and share the information they had from other employers and our mutual employer. I had gone through changes in the reimbursement system before. I have had issues with this system, and knew a change was needed. I wasn’t surprised that the change would be a pendulum swing to the opposite end of the spectrum.

For the second time in my career, my rate of pay is being reduced.

I had about a months notice for this pay reduction. 3% pay decrease starting October 1, 2019.

“This is minor compared to what I went through in 2000” I told my young coworkers.

From everything I heard, I was not too worried. It appeared that my employer was handling it calmer than other places. I felt secure because even though I am a prn employee, working on an as needed basis, I have had 30-40 hours of work lately because one full time therapist has been on medical leave. And, had plenty of hours before that happened. They needed me.

I knew I would likely have less hours. I was aware of the industry push to use less prn employees and have full timers flex hours and work weekends. This concept had affected me already at my last job less than 2 years ago.

I work primarily weekends because that his been my only semi-guaranteed way to get hours.

Because of the anticipated change, I had been working as many hours as needed while they were available. I typically worked between 15-25 hours before and now began working 30-40 hours. I had several weeks where I had to pay close attention to my hours so as not to go into overtime. Paying prn employees overtime is a big no-no in healthcare. As a prn employee, I have no benefits and so my rate of pay is higher than full time therapists. Yet, my higher rate of pay is the same prn rate as it was 22 years ago.

Flash forward to Monday, September 20, 2019:

11:16 am: I received a text saying I was not needed to come in for the 2-3 hours of work that I had agreed to on Friday. Not surprising, this happens all the time.

My reply:

OK, Hoping I will still be needed Friday with XXXXX having the day off, I had agreed to cover for her.

Working prn, my boss confirms if I am needed to work the next day. If I don’t hear, I check in to confirm I am needed to work. This has been the typical practice for years and across several employers. I have always been frustrated by last minute call-offs, but despite my efforts to change this, the best result I have gotten has been a confirmation text the day before. My current boss has been the most consistent with this practice and this employer has been my best experience working prn in a nursing home/rehab center.

I was then told that I would not be needed on Friday, And likely for the weekend as well.

There were changes that even my boss wasn’t expecting.

I like my current employer and am happy I am working for this company and not somewhere else. I share this because this is an across the board change affecting all of the Occupational, Physical, and Speech Language Therapists who work in rehabilitation where Medicare is the primary reimbursement system.

As is always the case, the need for prn coverage changes constantly and usually, how much help is needed, is not known until the day before because of fluctuations in the census.

This is good, I can now devote more time to the business my husband and I have recently started.

But wait, we are finally out of major credit care debt and I have been working extra hours to pay off debt and to build our savings.

This is good, Gina, the universe is telling you, once again, to pour your time and energy into your new business and writing pursuits.

Will I have any hours over the next week?

I have no idea.

Surely, they will need me once the census picks up.

Right?

We’ll fight the powers that be, just
Don’t pick our destiny ’cause
You don’t know us, you don’t belong

Oh, we’re not gonna take it
No, we ain’t gonna take it
Oh, we’re not gonna take it anymore

Oh, you’re so condescending
Your gall is never ending
We don’t want nothin’, not a thing from you

Your life is trite and jaded
Boring and confiscated
If that’s your best, your best won’t do

It will be ok, Gina, you can finally write more and work on the book that has been inside of you for so long.

It will be ok, Don and I have come along way with our new business and have speaking engagements set up and we are working with a business coach.

This is time to step up and dive in to a new chapter of my career as an Occupational Therapist. I can use my experience and talents in a new way and outside the healthcare system.

Sunrise: reflections and insight

Today I awoke at 5:30 am feeling refreshed and recharged. Looking out the giant window as I lay in the comfortable bed, I was able to remain quiet and calm and go within. I have learned that I use music to help me focus and to restore my energy. Music is healing

Silence is golden

I often resist quiet meditation time. My sweet husband has reminded me often how important it is to have time in the quiet. I know that in theory and believe it. Yet, I have used excuses as to why I don’t do that. Who has time to sit and be quiet? For me, it isn’t even about the time. It’s more about my mind being so busy with thoughts, often anxiety, that I have needed music to quiet the inner turmoil in order to focus.

Time alone is essential

I have discovered many things about myself over the course of the past three days.

I enjoy:

Walks on the beach without a plan or time frame

Reading while in my beach chair at the water side as my chair slowly sinks deeper and the water rushes against me as the tide comes in

Walking along the boardwalk at sunset

Walking on the beach at sunrise, something I already knew

Watching people

Talking with random strangers and learning about their life

Having casual conversations with the employees at the pier store

Connecting with someone because she has a dog and is standing alone

I have learned these things that either I didn’t realize or had forgotten:

Talking to people gives me inspiration for writing

Having an adventure by myself makes me giggle and also gives me writing ideas

I really do not care what other people think about me

I enjoy video blogging, even if I’m not yet good at it

What is good enough?

I like order and having a plan

I also love spontaneity and the freedom to do whatever…

Drink from the carton with the refrigerator door open

Leave things messy and fall asleep without changing

It is really cool to sit on a bed and be able to view two televisions and to be able to watch two shows at once

And I don’t understand why anyone, even an actress in a movie, would cheat on Richard Gere!

Watching Harry Potter movies by myself is not nearly as fun as watching them with my kids.

Watching feel good, uplifting movies inspires me to write

Stepmom is an amazing movie and makes me cry,while sitting in my pink bath

When I am depressed, I don’t feel real sadness

Depression and sadness are two very different things

Being on the 20the floor with an entire side wall of windows, in the heart of Myrtle Beach and being able to view the city and the ocean, is…

THE MOST AMAZING GETAWAY that I could ever have asked for.

I plan to make this a yearly pilgrimage and I want this very room each time.

I will be happy with any room with a side view from the 20th floor, or the 19th, even the 17th would be high enough for a beautiful view, right?

I like consistency and the idea of coming back to this very room to have memories to inspire me to write even more.

I also love change and variety and know that I will be inspired to write from any floor of this building, yet being up high is the most amazing.

My fear of heights is also exhilarating…

Standing at the edge of the balcony looking out

Looking to the ocean doesn’t really bring fear, but when I turn for the city vie, that’s when my heart races and my chest tightens

Maybe there is a message in that

Or maybe my fear is more about falling into traffic and landing on concrete

I do have some claustrophobia discovered when standing on a narrow hallway with no windows, on the 20th floor of a glass building, and reading the sign that say, “in case of fire, use the stairs, brings scary things into my mind that I had to shut down immediately to enjoy myself.

And maybe that’s the difference with someone with obsessive compulsive disorder and myself. I have fears and even obsess over ideas somethings, yet I have the ability to shut down the thoughts quickly. I knew that OCD involved the inability to shut down irrational, unhelpful, scary thoughts. Yet thinking about standing in the hallway reading that sign and how easily I was able to shut the thought out AND how easily I was able to NOT let it stop me from enjoying myself. Sure, it entered my mind each time I saw it, but I quickly moved on and didn’t obsess about it when I wasn’t standing there next to the sign.

I am always amazed at the clarity writing brings me. I had no idea when I sat down to write that I would talk about the sign and discover insight into Obsessive Compulsive Disorder, an illness that invades my children’s lives.

We won’t be staying on the top floor next month when I bring my family to North Myrtle to celebrate my 50th birthday. And that is ok with me.

I will stop and listen better to them, knowing that sitting with the fear is what they need to do to overcome OCD, and also that they don’t have to sit with all their fears, especially when on vacation. There is a difference between their fears stopping us living our lives, and minimizing being in fearful situations so that they can relax and have an enjoyable time while on vacation.

I could sit here all day on this balcony.

It’s 7:30 am now and I just remembered I wanted to take a picture of the sunrise for this post.

I can leave today, knowing I can come back here with points and also without points.

I can stay longer next time.

I can leave here today, looking forward to coming back in three weeks with my family with the thought of all five, and hopefully six of us, will be together on the beach.

We have a tradition of family vacations at the beach and that is something they will take with them for the rest of their lives. And even after I am gone, they can come to the beach and think about me, remembering our time together.

I need to go home and find the pen drive with the journal entries I write for Jason’s journal. I have Harrison and Abbys’s on paper in my bedroom closet. I likely have more entries for them as well on those pen drives or stored somewhere on a computer.

My post had moved from inspiration to a to do list….

I will capture my picture of where I am now and move forward.

Caregiver Burnout

I have both personal and professional experience with caregiver burnout.

I work in adult and primarily, geriatric, rehab as an Occupational Therapist. I have worked in this area my entire career, since 1992, when I graduated from Elizabethtown College with my bachelor of science degree in Occupational Therapy.

As I wrote The word career, I had to stop. Yes, I have had a career…it sounded bizarre to me after I typed those words.

Being a mom has always been my desire and passion. Occupational Therapy is something that feels like a part of me, yet since having children, it became a job, one I had to do to earn a living and had to continue doing when my husband’s business was getting started. And over the years, for many reasons, I have been the primary breadwinner most of the time. Don and I are part of book, our story is one of 60 others in Breadwinner Wives and the Men they Marry.

I don’t think of myself as a “career woman”. I think of myself as a mom who is also an Occupational Therapist. Being a mom is my most challenging and most rewarding “job” and my favorite role.

As an Occupational Therapist, caregiver education is very important. Over the years, I have realized in geriatric rehab and especially when working with people with dementia, that caregiver education is vital. With dementia, caregiver education is not only essential but also needs to be the primary role for an Occupational Therapist.

I see first hand from the people I work with and their caregivers, the impact of caregiver burnout.

I also have been a caregiver for my husband after he suffered a near fatal, massive heart attack in 2011 and spent 12 days in the hospital and 6 months in recovery.

When he graduated cardiac rehab 6 months after his “event”, I developed bronchitis which was reoccurring for over 6 months and then was in a car accident, ironically, one year after his heart attack. I still had wheezing at the time of the car accident, enough that they x-rayed my lungs. I didn’t have any major injuries and went home from the hospital the day of the accident. Yet, I suffered from that accident for a long time. Physically, I hurt for several months and mentally and emotionally, I suffered for years.

I honestly believe my recurrent bronchitis was a result of caregiver burnout and on a spiritual level, so was my car accident. The other driver was 100% the cause of the accident, or so the police reports and insurance companies said. I have forgiven the driver, never really blamed her per se. I blamed the fact that she wasn’t paying attention fully as she drove with her 2 year old in the car with her. One of my first questions after my accident was, “Are the other people ok?”, as blood ran down my nose after getting myself out of my car through the passenger door because I thought the smoke from the airbags meant the car could be on fire. The driver’s side door could not be opened as she had slammed into me making a left turn into the front corner of my car, pushing me sideways into another car at a stop sign.

“Are the other people ok?”

I am a mother of three, a wife, a healthcare worker, a child of aging parents, a child of a parent with chronic illnesses. Did I mention they called my husband’s heart attack, “a widow makers heart attack”? The medics and ER doctors, brought him back to life.

I am a caregiver.

I am significantly injured in a car accident and my first question to bystanders is, “Are the other people ok?”

As Caregivers, we often put the needs of others ahead of our own needs. Yet, doing this over time, affects our own health. And if we don’t stop and meet our own needs, we can suffer in many ways.

I am the mother of children who suffer with mental illness.

I am diagnosed with Bipolar Depression, Bipolar II. I only discovers my diagnosis because my brother also has this illness. I suffered for years with undiagnosed depression. Undiagnosed because, to me, it didn’t look like significant depression. I knew it was depression but told myself for years that it was “mild depression”. I was still functioning. I didn’t seek help until a friend who was prompted by my husband to convince me to seek help. That was nearly 5 years ago.

I have always known the importance of taking care of myself. I used to think I did a very good job at giving myself “me time”, attending to my own physical, spiritual and emotional health. My favorite metaphor is,

We must first put on our own oxygen mask, before we can help the person next to us with theirs.

Yet, I see now how much of my energy has been invested in caring for others.

I have repeatedly said that my job as an O.T. is mentally, emotionally and physically exhausting and coming home to be a caregiver for others is very taxing. I even joke about how I wish I had become an accountant or gone into a math field, as math was my best subject in school. The thought of sitting alone with numbers all day sounds like a nice change from being a caregiver.

Caregivers care for others because they have to and also many times, because it is their nature to do so.

Many people of all ages, need a caregiver. From babies and children of all ages though aging parents, people can have needs that they can not handle alone.

As humans, we all need to care for each other.

Being a primary caregiver to someone demands our time and our energy. Giving energy to others and not refilling our own cup, is what depletes us.

For me, I need to be alone, away from the house and away from immediate responsibilities in order to recharge. After my second child was born, I began a ritual of Monday night out, writing time. I created Charlottehomeschooling,com in that time. I have written thousands of journal entries, for myself and for my children’s journals that I started for all three of them when I was pregnant with each of them. I started my bogs using Monday night writing. First Gina’s Life Journey and them Child-led Learning . I have used that time to both talk with my husband as well as work on my end for our family coaching Business, Focused Health Family.

My writing time started as a hobby, as my passion. I came home refreshed and renewed and re-energized for the other aspects of my life, for caregiving. Then it became “work” and I found myself escaping from writing during my time alone, playing online games and watching movies and TV shows. I escaped because my life was overwhelming and because distracting myself from all my stress was my way of “coping” and I thought it was recharging me.

I am here now, alone at the beach, for 3 days and 2 nights because I finally realized how burned out I had become. I also finally realized that getting away by myself was essential to overcoming my bipolar depression.

Please share your stories about being a caregiver. My blog is intended to spark a community of support for myself and for others. I would love to share other’s stories , either as a guest blogger or anonymously with my help and your permission to share for your story. I want to help others through my experience, creating a community and connecting others with similar struggles.

I am a caregiver.

Now it is time for a sunrise walk on the beach.

Sending Big Waves into Motion, releasing secrets

Relax, renew, rejuvenate and recharge, take 2.

I am at the beach all by myself. I have never done this before. I’ve been here for 6 hours and I am finally sitting down to write. It has taken me this long to settle in, move from the shock and excitement of actually being here, all by myself. And finally, focusing on here and now.

I texted and made videos and took pictures and FaceTimed my youngest, while exploring my room at the top of the resort building, while walking in the beach and pier. I felt kind of lonely when I got here. I always come to the beach with my kids or at least my husband. One time the two of us went, well, before kids, I guess we went several times. Who can remember 22 years ago before kids?

I have everything I need for my adventure, inspiring books, music, healthy and yummy food, drinks, did you know you can get wine in a can?

As I packed my bag to head to the beach to write, I realized that I forgot my Bluetooth key board that I use with my iPad. My iPad, has been my computer for a while now… years, I guess. Something else that I can’t quite remember.

I have a lap top, buried in books and papers on my desk. It is old and I used to use it often, but decided I liked my iPad much better.

I found myself responding to a post on a Facebook group, Unschooling Special Needs, earlier and it has inspired my writing today.

There are so many things I can write about. Yet, the concerns shared in the post on the Unschooling Special Needs group are so close to my heart and the reason my husband and I now have a business together helping families with challenges, especially those with anxiety issues and challenging behavior with their children.

I have Bipolar 2 Depression. My upswings, are hypomania, not full on mania (well, it can escalate to mania). Hypomania is great, highly focused, functioning and much energy! Yet, the downswing is like the riptide pulling you under the ocean water.

Helping my children with their struggles is extra challenging for me because of my struggles. I can’t even imagine what it must be like for my husband.

In three weeks I celebrate my 50th birthday. I am proud and excited to reach this milestone! Seriously, I am. With age, has common not only wisdom, but confidence, clarity, courage and healing.

I always make time to write when I have come to the beach with my family. I have wonderful memories being here with my family. And I also have memories of stress, anxiety, OCD flare ups, and the feeling of disappointment that we couldn’t just have a “normal family vacation” without the anxieties.

Here I am now, writing and also texting with my tech support son. I might have him help me locate a key pad. Typing on the iPad screen is slow.

It’s getting dark and the sound of the ocean is mesmerizing me.

When I was younger, I would never have gone somewhere like this by myself. The silence of being alone was challenging for me. I now cherish time to myself. I still love the sounds of people talking, and my music, Tom Petty and now Mary Lambert sing in my ear..which is even more beautiful with the sound of the ocean.

They tell us from the time we’re young
To hide the things that we don’t like about ourselves
Inside ourselves
I know I’m not the only one who spent so long attempting to be someone else
Well I’m over it

I don’t care if the world knows what my secrets are (secrets are)
I don’t care if the world knows what my secrets are (secrets are)