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. 
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On Mothering

The last twenty some weeks of mothering have offered me joy and moments of pure  ecstasy along with the ever looming “can’t do it all” ghost, but this week is different.

Balance has always be a struggle for me. I find myself often overindulging. One is never enough.  

After 3 days teaching kindergarten, I have renewed sense of purpose in my mothering. 

Today, I make a case for mothering. 

Whether 5 or 6 or 66, we all need a mother at points throughout our years. This week, I saw young children needing mothering in a very real well. Granted, the ones that are desperate for it have non-traditionally absent parents or just absent ones altogether. The mothers who think it is a 5 year olds responsibility to remember his lunch, backpack, books, and socks are little different from the ones who cannot be bothered to get out of bed to come get their sick child so they send a relative stranger instead.

Today we suffer from both too little and too much mothering, with all the talk of millennials and helicopter parents, we know it goes both ways.  I would, however , argue that there is a huge difference between mothering and smothering which is what I would define as a parent who cannot allow their child to succeed or fail on their own or without involvement.

To me, mothering is care. Mothering is patience. Mothering is putting my damn phone down and looking my daughter in the eyes. I am not great at all of these, but they are the core of connection. Connection, attention, safety, love is what each child craves and needs in order to learn, grow, discover themselves. 

Today, we could use a little more mothering, a little more care, a little more time payed to what our thoughts and fears are. 

Yesterday a child who is often treated like an after thought, drew a picture of a rose for his momma and wrote how much he loved her. I cried. I was angry. How could she not see the perfect love this little boy had for her and return it ten fold? It didn’t matter. Regardless of her mothering, he was going to love her fully.  

I hate to judge but when I see children being hurt by blatant carelessness, I take it personally. Maybe that is why I became a teacher. Maybe that is why being a mom has been my biggest dream.  

I try not to get blinded by the love. I want to support my daughter and help her develop the skills that will take her running from me and into her future. I want to teach her to be a good person as well as a good student. I want her to question and love with out boundaries. 

She cannot do any of this with out love.

So today, I beg you, love your kids. Put your phone down when they are around. Look them in the eye. Put a damn pair of socks on them before they leave for kindergarten. Maybe then you would see the blisters on their feet, the cracked open sores, the love in their eyes when you notice them: this is the case for mothering. 

*photo by Misty Crites  

 

Never give yourself a bikini wax OR 10 life lessons I have learned by 30

  1. There is never a comfortable way to answer your mom’s questions about stds.
  2. Nothing says “trashy” like camel toe.
  3. True love and true friendship are equally hard to find. 
  4. Someone will always be better, smarter, prettier, stronger, ballsier, (fill in the blank_______) than you. 
  5. Too much of a good thing will always be bad, (i.e. too much vit C = UTI.)
  6. Never wear white to a wedding, ever. 
  7. Never judge a book by its cover. (or Sarah Jessica Parker is gracious enough to look the other way when you poop pants.) 
  8. Never let your partner deliver your baby….the things they see….you will not live this down.
  9. Never give yourself a bikini wax … And if you must ….
  10. ALWAYS Make sure your partner turns off their Xbox live mic before helping you with the hot wax accident.

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.

The best worst day of my life: my very Lyme homebirth, part one.

I want to write about this in a way that capture the feeling of these two days, but the emotion is still too raw to share. I can merely recount what happened, from my perspective, over these days.

10/15/15 2:30a

Sharp pressure woke me up. Contractions were nothing new, but this was intense. I was nauseous and tired.

I drank castor oil the night before. My water had broken. I  walked more than 5 hours. I had thrown up anything I ate or drank in the last 12 hours and finally I was 1 stinking centimeter dilated after all that.

Exhausted, I grabbed a pillow, repositioning myself in the child’s pose, hoping to cope and distract myself, I put something on the IPad to watch. I have no recollection of what.

An hour later, the pain and pressure were getting intense. I woke Sam up, I don’t know if it was from moaning or because I woke him up.

Trying a few different positions to cope with pain was nothing new. I had passed multiple kidney stones (sans medication) in the last month and been sicker than I had been in the history of my disease for the last ten.

6:30 am

In the bathtub, listening to Sam talk about being in an ocean (or a ball pit 😂😂😂 ) I remember little but the sound and feel of the water. Sam says I was making noise, lots of noise. At this point Sam called the midwife to let her know that we thought we were in labor. She asked Sam to time the contractions and call her back, she was getting ready and on her way. She had left just 5 hours early to make the 2 hour drive back to her home. I had only been 1 cm only a few hours earlier, after having contractions for days and other labor signs.

8am

I feel a need to push. It is more primal than anything I have felt before in my life. There was no way I could have done anything in that moment other than push. I felt suddenly like I needed to get out of my bathtub. Sam moved me to the couch, worried the baby would hit her head on the floor 😂😂😂😂.

At this point I should say that I have the most incredible, supportive, rock of a man in the world. He was out of his mind with fear and still calm as a cucumber and ready to deliver our daughter on his own.

He called the midwife back and she was on her way, about an hour out. I remember specifically Sam telling me that she was an hour away. This is one detail that rings clear for me. At this point, I willed my body to slow down for the first time the entire pregnancy. I breathed, I pushed, I tried not to.

9am

The midwife arrived.

There had been a few different plans, including delivering at a local hospital, throughout the course of the pregnancy. I would be lying if I said I didn’t WANT a home birth. Sam and I are deeply private people (says the woman with a blog) and have always done things as quietly and simply together as possible. I had fears of interventions among other things. I should have known not to let my fears ever drive a situation or decision. It seemed my body was giving me the labor I wanted when it had so surely denied me the healthy pregnancy experience I craved.

9:05 am

The midwife, Sam and a nurse move me into the birth tub. I remember thinking there is no way I can lift my leg up to my hip to crawl in there. Somehow I did.

Down on all fours, head on Sam’s chest, he sat on the piano stool in front me. The cardinals were pecking at the feeder in the window though we couldn’t see them through the tapestry hung up, diffusing the morning light.

9:26 am

I feel true pain for the first time as Arden crowns. The midwife applies counter pressure and I feel a small tear happen.

9:27am

A moment later, I am flipping over, taking my screaming daughter out of the midwife’s hands. A warm wet towel is placed on top of both of us. She is beautiful. She is bluish pink, pooping, peeing, squalling, perfect baby girl. Sam was in the moment enough to snap 3 or 4 of the most incredible pictures.

It was truly the happiest moment of my life. The most distinct memory is that of her crying and Sam laughing and how incredibly similar and joyful the two sounded.

The joy, adrenaline, and rush of labor were truly euphoric. Calm and warm, holding my child, I delivered the placenta easily and it seemed fully intact. The cord blood drawl began. (Because I have Lyme and co infections I had been on 2400mg of omnicef and 500mg of Zithromax a day for the duration of the pregnancy. The goal was not to pass it through the placenta to Arden. It had felt like an impossible task most days. When I couldn’t keep the meds down, a shot was what awaited me.) after the samples were collected and packaged, the midwife cut the cord, wrapped Arden up, assessed her, weighed her and gave her to Sam to hold while I was examined, showered, and crawled in bed.

Arden on my chest, Sam beside me. The midwife and nurse cleaned up the house, started laundry, checked in on us, took vitals, packaged the blood and placenta samples for Arden’s Lyme test and left about 4 hours after delivery. This time was a blur and really feels like about 60 min. We had called family and told them to come to the house though we didn’t tell them the baby had come. I remember texting my brother, who is a musician in Houston and my best friend to let them know the baby was here.

1:30pm

As we laid together, a family of three. We were high on the joy of birth. It had been an intense but beautiful and powerful experience. It had seemed all to perfect, too quick. We looked at each other and said “why would anyone do this any other way or place?” It was in that moment that God decided to answer us and hemorrhage number one began.

To be continued. (Read Part 2 Here)

A whole new view

The first time I saw this shirt, it was on my husband.  We were in a Wendy’s parking lot in Morgantown, WV because he had gotten lost. I was so nervous. It was our first date.

I stumbled out of bed this morning, planning on packing up the baby and heading out for doctor appointments and a chance to see my sisters.  I have never been good at seeing what is right in front of me. I can see the whole picture, everything that needs done, but ask me to see what is right in front of my face and I miss it more often than not. 

In my morning haze, I had thrown on clothes as I stumbled towards the kitchen to let the dog outside. Sam had Arden and was reading to her. I never saw what I put on. 

Today, with a snow storm barrelling towards us, I managed to see what was in front of me and we stayed home. After a brief “relapse” into my frantic big-picture-gotta-get-stuff-done mentality, I sat down rock Arden to sleep, I looked down at her beautiful smiling face and saw the shirt. 

For one moment I was 23 and worried about what I had on, whether I should hug him, shake his hand, or just say “hey.”  I saw the shirt in my living room as he awkwardly spit cherry pits into a bowl.  I saw the shirt as he came back for a second kiss after having already left. He “couldn’t wait a week for another.”  I saw the shirt with our daughter’s hands softly resting on it and I realized that for all my big picture scheming, I never saw this. 

Almost 8 years later, I am surprised at how well the shirt has held up. But today I am most surprised that I saw what was in front of me.   The first time I saw this shirt I almost missed the moment for all the worries and anxieties of a first date. 

Today, I am trying a new view.

Ode to a Mexican blanket

Oh sweet warmth, rough edges softened with time and age. First to see love from the bottom of an old truck bed.

The witness to many magical moments,

The tent that April,

The protection from the cold of Indian rock, as we pledged our lives together.

Tattered with time, tainted with trees, witness to one, two, now three.