Pain

To thrive

while one so loved, so vibrant

struggles for life.

I have known pain

I  have known disease

I have known heartbreak

I have known trauma

At the end of my cloud,

was a rainbow,

a pot of gold.

I have now both seen pain.

I have now seen trauma, heartbreak, and disease.

To see is worse than to feel.

To see is helpless.

To thrive

while one so loved, so vibrant

struggles for life…..

Advertisements

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!”

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. 

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  

 

Quicksand 

Worse than a kick in the stomach, worse than even my own fears is watching loved ones flounder, hurt, and experience profound suffering.

To see the earth we trust, the lives we build trap us and then slowly swollow us whole is a betrayal like none other.

The women I love more than life, my sister and best friend, are experiencing life altering health problems.

They are invisible to the world and yet their hurt and illness is so real it threatens both of their lives. 

How can there be joy, when one you love is so deeply trenched in pain?  

How can I ease their suffering without taking it on as mine? 

How do I hold out hope as I watch it flicker from their eyes? 

How do you find the strength to fight another day? 

Your beauty is alluring.

Your strength is stunning.

Your battle may be the sexiest thing about you. 

Your fight is inspiring. 
Healing, hope, hurt, despair, each a state of mind. 
Your strength, Your inspiration, Pulls me from my quicksand of despair. 
Lend me your hand, your heart, your burden.

I don’t know how, but I promise 

I will not let your suffering be in vain.

I didn’t have a choice.

Yesterday was my first day back to work. After having a baby 16 weeks ago today,I am one of the fortunate ones to just be going back now.

While working, I ran into a young teacher and mother who had recently substituted in my old position for an extended period. In a quick conversation I made the comment,“I don’t know how you did it!” 

“I didn’t have a choice.” She replied.

This statement stayed with me all day.

I had originally planned to be home for this 16 week period of time; with saved and generously donated paid time off, I would return to work in February, finish out the school year, and decide from there how to manage career, family, and bills.

As life, Lyme, hyper gravidarum would have it, I couldn’t do that and blew through my sick leave within 5 months of a debilitating pregnancy. I spent months building up strength and finally decided to make a push and try to go back to my classroom that fall. I made it 5 days (2 with 163 students) before collapsing physically and mentally under the load.

I didn’t chose to be sick, get bit by a tick or be unable to get out of bed. I did choose to become pregnant and often times I confused that choice with a misguided responsibility to “fulfill my duties” to my work and students. I continued teaching a course online for 9 weeks after going on full FMLA, even though I could barely function, had to have my husband read me the emails half the time, and was typically vomiting at the time I was supposed to be “with” the class and lecturing.

But I made a choice.

I felt like a failure. After months with out a pay check, we had learned to live on less. Like ALOT less. It felt really good. We had done this before, living in a cabin in the woods on a 1/2 time teachers salary.

After my daughter was born, I realized that I could live with being the most beat up house on our very nice street, for a few more years. I am cool with the rust on my car, as long as it will pass inspection and keep on driving. I am ok with juggling bills, hurting my credit, and relying on the goodness of family occasionally.

We can’t be too prideful. We can’t have the perfect car or image. I have done some major damage to our credit in juggling bills in the last 4 months…

…but that was a choice I made.

I make a choice to swollow my pride. I quit my full time teaching job to work as a substitute.

I choose to be the shittiest house on the street.

I choose as many mornings as I can swing with my little one.  Does that mean that the phone rings and people sometimes want money? It does. As it turns out, that job I could have gone back to was cut this week. It is affirming to see that had I chosen to go back, the universe would have simply reversed my course a little less gently.

This is not to dog working mothers.

We are all working mothers.

What I am asking each us to do is to stop belittling each other by making statements like “I wish I could do that.” Or “I just don’t have a choice.”

The only result produced by these types of statements is to further divide us as a group of women who are each  fighting the same battle, juggling what we can and cannot live  without, and wishing desperately for a maid, nanny and/or fairy god mother.

We each have a choice and those choices will define who we are as women, no doubt. However, Let’s choose to cheer each other on. If you are gonna go be that BAMF exec and show your little girl she can do anything! Do it! Own it! Rock it! I am taking a slightly different path. But I own it. This path is mine. I have been led here by my choices.

There are many things we each wish we could do, but we all have a choice.

Today I applaud your choice!

“She’s Lyme FREE” (and now I may be too): my Lyme Pregnancy Protocol

Disclaimer** I am not a doctor.  This is just my story of how I managed my disease during pregnancy with the help of a plan developed specifically for me with a LLMD.  This should not be used as protocol for anyone else;  I am sharing it to share the hope of a Lyme FREE child!

Antibiotic Protocol 1st and 2nd Trimester:

  • Prescribed: 1200 mg of Omnicef 3 times a day.
    • I couldn’t tolerate it and and was herxing constantly.
    • After 4 weeks of approximately 0-1200mg of Omincef a day, the dosage was lowered.
  • Prescribed: 1200 mg of Omnicef 2 times a day.
    • I still typically only got down 1200mg ONCE a day due to vomiting and herxing.
    • On the days I couldn’t get anything down, I was given shots.

Antibiotic Protocol 3rd Trimester:

  • Prescribed: 1200 mg of Omnicef 2 times a day
  • Prescribed: 500 mg of Zithromax once a day
    • I typically only got down ONE dose of Omnicef and the Zithromax dose.

Supplements, Pregnancy, Lyme, and Gene Mutation MTHFR:

MTHFR Gene Mutation is SIGNIFICANT to pregnancy as regular Folic Acid can cause embolisms in women with this gene mutation.  It is incredibly common, especially in those with chronic illnesses.  Wellness Mama, does a great job explaining this mutation, its significance, treatment, etc. at her blog, here.

  • Methylated Folic Acid (Methyl-Folate)
  • Methyl-B12
  • Potassium (powder)

I was prescribed several more supplements but these were the only ones I could keep down. I am guessing because they were primarily soluble.

Flares, Herxing, Whatever you want to Call it:

These were a daily (normally 2-4 times daily) occurrence. For me, my flares appear in the form of simultaneous projectile vomiting and diarrhea, muscle spasms, intense anxiety, muscle weakness, and migraines. Coupling this with morning sickness made it almost impossible to eat food, take meds, or function.  This is why I lost over 50lbs through out the course of my pregnancy.

To manage daily Herxing/Fare Reactions:

  • Activated Charcoal /Epsom Salt Baths
    • I would use about 6-10 charcoal tablets (560mg)
    • Along with 4-6 cups of Epson Salts
    • Soaking for an hour or more.
  • Herbal Drops
    • Parsley, Pinella, and Burbur
      • Take 10 drops (each) in purified water every 10 minutes
  • Calming the Child Oils

Nausea Support:

  • I stayed away from Zofran until week 29 of pregnancy, worried about cleft pallets.
  • Diclegis
  • Phenergan
  • Sea Bands
  • Yoga
  • Hypnosis
  • Acupressure
  • Massage
  • Ginger
  • Rubbing Alchol Swatches
  • Herbals
  • You name it…I tried it.

After Birth Lyme Testing

After she was born, the nurse and midwife collected placenta samples as well as cord blood samples. These were sent to IGeneX Lab .  The test kit had been previously ordered through my LLMD and I kept it on hand with me throughout the whole pregnancy. Originally I had been told to expect 6-8 weeks for an answer but 22 DAYS after she was born, I got a call at 3 minutes till noon telling me that my sweet baby girl was LYME FREE!  It was the second best day of my life.

The Hope

I share this because I know the fear I had when I found out what Lyme could mean for my dreams of becoming a mother.  I searched high and low for successful pregnancies.  I was desperate for info, I was desperate for a child, I was desperate for hope.  Please feel free to reach out with questions, share your own stories, etc. Understand as new mother, I may not be the quickest in getting back to you.  But the hope, there is hope.

My Lyme free daughter will be 15 weeks old tomorrow and will be 15 weeks since I experienced 4 blood transfusions that have left me feeling completely symptom free.  I am baffled, excited, and hopeful.  The CDC even suggests dialysis and blood and exchange transfusions for severe Babesiosis patients. Blood work is still coming in, my LLMD is still working on me, but something has changed and healing has begun.  I am excited to share my journey with you.