New Site, New Book

So I started this journey in a fluke 2 years ago but in following my bliss, taking some wrong turns, I have found that my joy is writing. I am far from perfect. I am no Ernest Hemingway or Joseph Campbell but I believe I have something unique to say. In an effort to move past the parts that I have used to define and embrace myself and my journey as a whole, here is my new site of you are interested in following I would appreciate it.

Rachel Writes Her Heart on Her Sleeve

Thanks

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Enough with the articles! (0r) 5 Reasons why all millennials aren’t coming back to the institutional church, as told by a reluctant millennial.

*disclaimer, I am not speaking here for my entire generation, just a lot of us.  I am also not telling you that your spirituality has to look like mine.

  1.  Historically, the institutional church has been on the side of evil over good. (inquisition, perpetuation of slavery and segregation).
    • We yearly see history repeating itself world wide….
  2. The doctrine of “grace”is happy to apply to “all”, even those predators that are running rampant throughout the pulpits.
    • We are not ok with another generation being sexually abused, exploited, indoctrinated, and shamed.
  3. The way the Bible is being interpreted and used as a bully pulpit is often in direct contradiction to what was actually being said in the original language and time.
    • Guys….we have the internet, we can study it on our own…..we don’t need some suited up dude trying to remember what some professor taught in their college doctrine courses….
    • Remember Martin Luther?
  4. Again, the internet……
    • We see all the elements of the institutional church that was “borrowed” wholesale from other religions…..be real y’all!!!  You don’t have to pretend this is all “God ordained…..” because when you preach that stuff right next to “thou shalt not lie….”   ya lost us……
  5. Why would anyone ever go to an organization, seeking spiritual honesty and vulnerability, when that organization has written and shared more “crap” about that group of people?
    • You see, we are starting our groups of spirituality.  There are small groups, book groups, home groups, etc.

The thing is, we are thriving spiritually, just not in the way that makes sense to you!

 

Real Housewives of West Virginia (RHoWV)

“life’s a bitch, but you don’t have to be!”

Dear Andy Cohen, 

 I have carefully been considering what my tagline would be if you ever wanted to do a REAL Real Housewives show. (Like really real!)

Like really real when a 60 foot gyser erupts in your front yard, your refrigerator and hot water tank die in the same week.

Like really real when you put your creditors name in the phone so you can say “hey Bob! Sorry, it is really tight this month…you are gonna have to keep calling.” Sorry man.

Like really real when you have to decide between taking a day off because you can’t get out of bed or forgoing a day’s pay. 

Like really real when you realize you left your coffee cup on the roof of your car and it made it all the way down the road, only to fall through your sun roof (cough rust roof cough cough) and douse you in sticky Carmel / hazelnut sweat to coat your day and your spirits.

Life is seriously the biggest bitch I have ever met, so be kind. Help a sister out. Let’s do a Dave Chapelle version of the Real Housewives and get really real!  

“life’s a bitch, but you don’t have to be!”

Honesty

Today I am teaching Family Studies and students were asked to write an essay on a time  they experienced the consequences of honesty….I was reminded of that time …. we all have that time….

We all know that person that is just “too honest” but I am not talking about the “that dress makes you look fat” kind of honesty. I am talking about the kind that is good intentioned and somehow, unintentionally, bites you in the arse.

It was 8th grade and three months in, I was still known as “virgin ears.”  After spending the last eight years home-schooled, sheltered, and naive I had become the “goody-two-shoes” of the private christian school I had just begun attending.  I entered Mrs. Thompson’s history class and we had a sub.  As I entered I saw Leigh Blair go through the ceiling tile, jump across a desk, and elbow drop Jim Ashely.  I had to get help!

Running to the office, asking for a teacher, I felt so proud of my honesty and desire to do the right thing.  That night, as I recounted the event to my mom, the horror on her face was lost on me.  Weeks later, as I was getting relentlessly teased, the effects of my honesty was still lost on me.  Today, as I witness “that kid,” I cringe, finally aware of honesty’s effects.

Better late than never.

Ten ways to say I care: An open letter to those who love someone with an invisible illness. 

We all know that hypochondriac. That is not who this letter is about.   It is not easy to watch a loved one suffer, even more difficult when you just don’t understand. To often our fear and lack of understanding can build. As a woman, fortunate enough to have lived on both of sides of this, I feel I have unique perspective and advice to offer.

1. Only ask how a person is, when you truly feel like hearing how they are doing. It is exhausting to truly listen and understand about someone’s life with chronic illness. We can only begin to imagine how exhausting it is to actually live it. When you are not up to it, It is ok NOT to ask how someone is doing! Truly understanding what a life, prognosis, treatment, etc is like will often leave the listener feeling sad, confused, and wholly having no clue what to say. It is ok if you aren’t emotionally up to talking about it. Quite often the person living it is not up to talking about it either. But when you can, when you have the heart, time, and stomach to ask and listen, that asking and true listening will mean more than words can express. 

2. Instead of telling them how good they look, tell them how glad you are to see them. Invisible illness is just that. Invisible. You rarely see the scars physical, mental, or emotional. This makes it difficult for people living with these diseases. They are daily fighting for their futures, their lives and some manner of normalcy. If a person with an invisible illness is out and with you, then something else in their life has been placed in the back burner. You are a priority to them. The fact that they are with you in that moment is huge. Dinner wasn’t cooked, laundry wasn’t done, and they may pay for it for days. A simple “thank you for being here” means that you appreciate how much their effort took and what it says about their love for you! 

3. These are proud people. They don’t want you to see their scars. The saddest part of invisible illness is it seems to strike those who are passionate in their lives and careers. They are marathon runners, doctors, nurses, therapists, business developers, mountain climbers, and more. If you are seeing them, it is because they really want you to. It is a GOOD day. Which is horrifyingly strange phenomenon when a good day used to constitute kicking butt and taking names like no ones business. Everyday is like learning to live again, as the rectify the life they now have to the dreams for the one they used to live. 

4. Answers aren’t easy and cures rarely exist. Like many diseases, invisible illness ones can be convoluted, political, and are ALWAYS desperately under-researched. Without proper understanding, funding, research, and medical information a cure will never be possible. Instead of suggesting treatments, telling anecdotal stories, etc, read the research available about the illness your loved one is facing. 

5. These illnesses can be fatal. While not everyone who experiences invisible illness will die, some do. We have all know that one person who dropped dead one day looking so healthy and vibrant the day before. Silent, invisible killers like Heart, Chrone’s or Lyme disease, endometriosis, depression, PTSD and others are real and demand our attention before they take more loved ones.

Living with invisible illness leaves the sufferer as well as their support system depleted, confused, scared, and on edge. We are often left wondering what can we do? 

  1. Ask how someone is, but only when you can listen. 
  2. Offering someone with invisible illness a meal is like the biggest hug in the world and winning the lottery. It gives you time, energy, healing nutrients, and the feeling that someone gets it! Healthy food makes all the difference. Not only is this a great way to support them but also their caregivers. 
  3. Understand when they can’t follow through on plans. Invisible illness may follow a pattern but is rarely predictable.
  4. Check on their care givers! Remind them they are human to. They spend their lives steeped in medical terminology, crushing diagnosis’s, and emotional upheaval. They need a break! They need to know someone is caring for their loved one so that they CAN take a break. 
  5. Be private with the information they share with you. Do NOT share their medical issues. They are not yours to share. Most of those who suffer from this disease are proud, and while they are desperate for someone to understand what they are facing, they do not need the world to know their embarrassing, exhausting medical issues. Show your support through sending positivity and prayers, listening, providing a meal, or a laugh.
  6. If you work in a place that allows sick leave donation, and you are able to do this, this not only provides a paycheck, access to insurance, and peace of mind. I was so blessed to have weeks!!! WEEKS 😍donated to me by my fellow teachers. This was the difference between paying bills and not paying bills. Treatments for these illnesses are very expensive and rarely are covered appropriately by insurance. 
  7. Take an activity to them, if they are up to it!  Tea time conversations or a movie can be great ways to provide distraction. Just remember not to overstay your welcome.  Visiting takes healing energy as well as giving it. 

My ‘uterus’ is bigger than your ‘uterus’

*Trigger warning: language

Killer Mike’s restatement of a tired and used mantra that “a uterus doesn’t qualify you to be President of the United States” brings up a valid point. Hillary’s uterus makes her no more or less qualified to be President of the United States than any other candidates’ scrotums automatically qualifies them for the office of POTUS.

We, as woman, have got to stop being offended by vocabulary terms. If anything, we should be offend by a culture that prizes pricks as the “have all, end all” of sex organs and all things representative of STRENGTH!

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The day(s) of death and life: my very Lyme Homebirth part 2.

(Read the first part of the birth story here)

*** Warning ***

*this post contains graphic information and is not for the faint of heart.

Part 1: Right After the Birth.  (end of my birth story blogs)

I had been warned that passing clots was not abnormal after labor.  I was expecting it.

But this felt different.

Sam can you call the midwife and tell her I just passed some substantial clots? I asked.

I am feeling a little light headed.

Sam checked in with her.  I had delivered our healthy 6lb 2 oz baby girl about 4 hours earlier and the midwife had left our home about 30 min before.

She’s in Elkins; do you want her to come back? he asks

I am not feeling quiet as hot as I had a few minutes earlier.  I was fine.  My heart wasn’t racing quiet like it had been.  I was just nervous.

No, tell her I am doing better and just going to crawl back in bed, drink fluids and rest.  I reply.

We enjoy the next 20 min as we wait in anticipation for the rest of our family, who are on their way, to join us!  It was a gorgeous day.  Warm and balmy, it was like summer but in the middle of October. Suddenly, I was hot all over.  My head was swimming; I was sick to my stomach.  Then I felt a loss of blood that felt similar to her shoulders exiting my body only a few hours earlier.

Something was wrong. That was too much blood.

I asked Sam to come around and help me to the bathroom, thankful I was laying on a chuck pad.  I thought I could get up and walk with it underneath me.  I quickly realized that wouldn’t work, and asked Sam to bring the trash can. Placing the plastic trash can between my legs, I tried to walk to the bathroom.

This is the last thing I remember.

RACHEL! RACHEL! RAAAACCHHHEEEELLLLL!!!!!

Sam is yelling in my face as I feel the cool breeze hitting my skin.  I am slipping back and forth.  He has my shoulders.  He looks terrified.  I have never seen him so scared.

What’s wrong? I manage to get out

YOU ARE! he screams in my face  YOU ARE WHAT’S WRONG!!!

In this moment, somehow seeing Arden though she lay 25 feet away through a wall, I willed myself to consciousness.  Sam and I spent a minute or so discussing options.  It felt like an eternity.  I wanted him to drive me to the hospital.  He called the midwife and she suggested cutting the placenta and eating it, calling 911, etc.  she was too far away at this point.  He knew he couldn’t carry me and take care of our infant so he called his dad to have him come help carry me to the car.

Sam asked me if I could stand.  I thought for sure I could.  I was sliding but didn’t realize it was from the blood that was running out of the sides of the toilet, covered my feet, and stained the tile.   Somehow, I made it to the bed, raised my feet and began massaging my uterus, hoping it would clamp down and the bleeding would stop.  Suddenly my husband came in.

There is an ambulance, down the street.  It was taking someone home.  It was just sitting there.  They are on their way.

 Apparently at this point, Sam’s dad had arrived and was having a panic attack on our front porch, called Sam’s mom, and then my mom arrived.  No one realized that Arden was there.  She lay there perfectly calm in her swing bed, swaddled, awake, calmly taking it all in.  At this point, the EMTs come into our bedroom.  They have a stretcher and are trying to get it in the door.  It won’t open all the way because of a thin black dresser behind the door.  I think “oh god…of all the things…why is my lingerie dresser behind the door…they are going to move it.  they are going to see.  what if one of my students is working today.”  

Thankfully they got it in the door without moving the little black dresser, but my one thought was quickly replaced with sheer wonder at how these two men were going to get me and this gurney out of the house and down the stairs.  It seemed an impossible task!  I completely judged a book by itscover while I lay there, slowly bleeding out.  They were two of the most wonderful men I have ever met in my life.  They are/were my angels.  They helped to save me.  But they were almost as wide as they were tall and the task of getting a 155lb woman out of a house and down the stairs seemed daunting, to say the least.

I remember each excruciating step because with each hit of gurney wheel, I felt myself loosing more blood.  I felt bad for my husbands robe.  I knew that was a goner at this point. Finally, in the back of the ambulance, they radio the local hospital to check and see if they have blood (they did) and they begin the short trek to the ER.

PART 2:  The ED Purgatory

At some point, it was decided that my mom would go with me to the hospital and that Sam and his parents would stay at our home with Arden while Sam checked in with the midwife who was frantically calling. When we got into the ED, the doctor immediately began to question why the baby wasn’t there.  He wanted to see the baby.  For some reason I got very scared and was worried they would try to take Arden away from us.  They take some labs ( I don’t remember this) and my vitals.

 My blood pressure was almost 200. My WBC was 41.  Something was wrong.  I offered the answer, lyme, for the elevated WBC and the ED doctor stated that he knew all about Lyme and that wasn’t it.

The next two hours I remember very little about.  Apparently they let my husband bring Arden there so I could nurse her.  When they arrived no one was massaging my uterus.  My mother-in-law asked for pitocin and they stated they “didn’t know what it was.”  The only persons of true help with the EMT personnel who took exceptional care of me and checked on me, got a zofran script to help stop the vomiting (which was increasing the bleeding).

During this time, my husband was talking to the midwife who had turned around and gone to the hospital closest to us with a labor and delivery surgeon and prepped them of my case.  The ED I was at was notified of this and then the mystery begins.  I was told the ED doctor and the surgeon on call got into an argument and my bed was cancelled.  Regardless, I laid in an ED for almost 2 hours, bleeding, with almost no care while two ego maniacs battled something out. Before being wheeled out, the doctor made a point to come in and tell me what an idiot I was for having a home-birth before hitting on my mom and strolling cocksure out of the room.

Part 3: The Transfer

This was my first time in an ambulance.  I really didn’t want to take one because I wasn’t sure if insurance would cover it or not.  Turns out, I didn’t have a choice.  I had lost three-fifths of my blood volume.

As we wound around the curvy roads of West Virginia, the nausea came back with a vengeance and the vomiting began.  Not even Zofran was helping now.  Things really became a blur.  I remember little but that sunset and those firey orange trees.  Those two things I remember, as we sped up I-79.

Part 4:  From Bad to Worse

I remember very clearly how bright the room and how many people there were.  I thought surely all these people aren’t here for me.  it is like goddamn stadium lighting in here.  i have never had so many people looking at my vagina.  oh my god those lights are so bright. A man in blue scrubs and a face masks talks to me about when I last ate and drank.  I realize it has something to do with intubation and asphyxation.  He seems surprised. Next I think I am telling people the story of story of the recent hostage situation at the school at which I taught.

You lost three-fifths of your blood volume so we are going to be starting some transfusions.

damn those lights were bright.  

The rest of this is pieced together based on what I have been told.

It is now almost 8 hours since I have delivered my daughter and they take me into surgery.  Apparently there was some sort of complication with the placenta and the uterus.  I had some blood clotting issues to say the least.  My labs, however, were what was terrifying.

I had HELLP.   It was a bad.

An hour or so later, out of surgery, I was back in the room with my husband and a couple other family members (maybe sister and mom or mother in law).

All of the sudden, I can’t breathe.  I am crashing.  I can’t breathe.  I am trying to tell the nurses, the doctors, someone.  There 9 goddamn people standing around my bed.

 I can’t breathe why can’t you hear me! Help me!

Apparently, I was getting some of it out as I terrified my waiting husband and family.  I was in bad shape.

  • I had been experiencing seizures as a result of the blood loss.
  • At the second hemorrhage, I seized, passed out, hit my head on the wooden window sill in-front of our toilet and received a concussion.
  • My Liver Enzymes were almost 600.
  • My platelets were at 4.
  • My blood pressure was still through the roof.
  • I needed more blood transfusions.
  • They started a magnesium drip to prevent any more seizures.

I woke up the next morning with 5 IV ports in me, monitors everywhere.  My skin was literally black from all the bruises where I had been poked, drawn, and transfused.  I was a mess.  Everything was blury and bowing towards the middle.  My husband looked terrible.  I  knew something must have happened.

I sat up and tried to hold my perfect little 6lb daughter, but I couldn’t.  Something didn’t feel right.  I called the nurse and asked if it could be anesthesia.

Next thing I knew, two guys showed up to take me to CT scan to check on my concussion.  Going down the hallway, I saw my dad talking to someone, but didn’t know who.  (It was my best friend) When I returned to the room, I couldn’t sit up.  Everything was dark.  Something was wrong.

Next thing I knew, I was paralyzed.  I started vomiting.  I was on my back.  I was terrified.  I couldn’t move.

At this point, my sister who is an ICU nurse, jumped up, turned on the suction machine and began suctioning me.  My mom called the nurse while they tried to turn me on my side.

Over the next hour, my heart began to slow, I couldn’t catch  a breath. I heard someone talking about magnesium toxicity and what it would do to the body.

That! That’s it!!!  My muscles can’t move.  I can’t move them!  Stop the magnesium!  my brain is trying to  yell

An hour and a half hour later, thanks to an amazingly quick thinking nurse, I was still paralyzed but quickly coming round once she turned off the magnesium drip.  I had become toxic as result of my liver not working and the magnesium had slowly paralyzed my muscles.

It has been 28 hours since I had given birth to my daughter.  Just 24 since the hemorrhage began.

In all of this, the hospital apparently tried to force my husband to take our daughter to the ER.  He was terrified as he watched me quickly go from bad to worse once I was admitted and told them so.  After some time, his family and mine talked him into admitting her.  My sister and brother-in-law, who thankfully worked in the children’s hospital, worked with the charge nurse to have her directly admitted so she wasn’t exposed to anything in the ER.

She was perfect.  She scored a 10 on her APGAR (a 9 after birth).  I was terrified of being treated like an imbecile for how our birth occurred but our midwife worked with the hospital to show the care we took for protocol, pre-natal care, testing, etc. and we were treated with EXTREME respect.

Five days later, we went home after the first snow the season, a family of three together, barely, but forever.

Picture from bruising 10 days after leaving the hospital.

This whole living in the moment thing…

I was supposed to go back to work this week but Martin Luther King Jr., winter storm Jonas, and forgotten doctors appointments have conspired against me … or for me as the case may be.

Tuesday morning, she almost said “mama” and that was supposed to be my first day back.

My dad, generously, had promised to be here to spend the whole day with her on my first day, so that I didn’t have to take her to day care AND be away for 8 hours simultaneously.

I am lucky.  She would have been with my dad.

But, instead, she was with me when she tried to form the word over and over again, not quite able to force the sound out from behind those perfect pursed lips.

I am TRULY lucky.

The money I could have earned that day would have been AMAZING, especially considering our refrigerator chose this week to stop working, but the reward of seeing her try to form her first words was worth more.

Today I am thankful for coolers, back up refrigerators, neighbors, slow cookers, first words, living in the moment and snow days.

Currently listening to Jon Bellion “ooh” courtesy of my amazing little brother who is teaching me to follow my dreams.