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. 

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.

“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.

 

 

Lactation support and ideas 

After giving birth to my daughter, I experienced a hemorrhage that, unfortunately, has left my milk supply a little on the low side.

Supplements I have tried:

  • fenugreek
  • blessed thistle

Food and Drinks I have tried:

  • lactation cookies
    • Recipe 1  (easy to make, can be a little salty)
    • Recipe 2 (a little flat but tasty)
    • Assessment: both worked well and I would recommend either.  When my sister made the first recipe her’s were much better than my original batch, but baking is not my specialty, it is hers.
  • lactation teas
    • Yogi – 2/5 stars.  I didn’t notice a huge difference with this tea.  I ordered it originally because of it’s price.
    • Mother’s Milk – 4/5 stars.  A little pricey but it definitely helps support the nursing supply.
    • Welda – 4/5 stars.  This one only gets a 4 out of 5 stars because it is so expensive.  It is by far the best nursing tea I tried and I noticed immediately results. As far as results go, it receives a 5 out of 5 stars.

Ideas not yet tried:

  • Placenta Encapsulation – I originally didn’t do this because we were unsure if I had passed Lyme through the placenta to Arden.  As it turns out, I didn’t!!!  I have recently begun considering that as a option to help support my nursing supply.
    • has anyone had any experience with this for their own nursing supply?
  • Other ideas? I am open to suggestions!!!

 

My very Lyme pregnancy part 2: a day in the life.

(Read Part 1 Here)

“Wash—blaaaaaa-cough cough-CLOTH.” I manage to get out between heaves.

Was it 2 yet? Had I kept my meds down long enough for them to be effective? 

Shivering, sweating, shaking, voiding everything from my body, it was just another day. It could have as easily been 2pm as 2am. The only way I knew what time it was depended on Sam’s location. If he was home it was the evening. If he was gone it was the day.

Slap! The cold washcloth hits my back as I grasp the trash can in front of me.

“Can I get you anything?”, says a discouraged and sleepy Sam.

Shit, I woke him up again.  I need anything to make me stop vomiting, shaking, dry heaving.

“Can you load something and start the bath?” I ask in between gags, gasps, gurgles.

An hour later, body warmed and calmed, the dry heaving over, the shaking subsiding, it is time for meds round two.

“You should really try to eat something. You haven’t kept food down in at least 12 hours or so.”

Fine. I attempt some saltines and ginger ale. It’s a crap shoot. Sam’s attempt to make sure he doesn’t find me passed out on the floor when he gets home for lunch.

~~~~~~

I had gone in a family medical leave of absence a few days before. There was no point. I could barely get out of bed by myself and had long ago run through my time off.

Was it Lyme? Babesia? Bartonella? Morning sickness? Who the hell knew.

I began an epic few months of seeking distraction from my body and a connection to my baby.  I would lay motionless for hours, trying hypnosis, meditation, acupressure, massage, yoga, meds. Name it and I tried it, desperate to carry this pregnancy to term.

Early on, I read that morning sickness had been linked (in one study) to women who had disease or toxicity in their body that could harm their fetus. The researches surmised that the morning sickness was the body’s way of ridding itself of anything harmful to the baby.  As unconfirmed as it was, I held onto this idea in my moments of deepest despair and frustration, praying that this was the thing  protecting her from this insidious disease. (I was watching my sister begin PICC line antibiotic treatment for her own disease).

Each day was a battle to get down at least 1/2 of my necessary medicine and as many calories as possible.  After I threw up the one thing I could eat from each restaurant in our incredibly small town, this became even more difficult.

Now, there were some good days; almost 3 weeks worth of days I was able to make it out of the house, to sit outside, or see a friend or sibling. Those days were magic. There were even 4 days were I attempted to start the school year before suffering an epic crash that started the kidney stone gauntlet!!!!

All in all, over my 9th month of pregnancy I passed almost 20 kidney stones (7 in one week). For the stone the size of a pinky nail, I had to go to the hospital to get IVs. I hadn’t kept fluids down in more than 24 hours from the pain.

As my due date drew closer, I got more and more excited. I expected her every day! The Braxton hicks started regularly at week 36 and continued every day until I delivered. My stamina was quickly wearing out.

I was so thankful for this pregnancy but had never been more exhausted and sick in my life.

Let the labor dance began! Dance I did. Every day I danced. I danced to The Roots (favorite); I danced to The Avett Brothers;  I danced to old school hip hop! Come on baby!!! Famished, I would only make it for a minute or two at a time, collapsing happy for a stronger a contraction and literally willing her here with every fiber of my being, hoping desperately I would not be sick once she was born.

I stayed on antibiotics throughout the course of the pregnancy in hopes of keeping the Lyme from passing to Arden. I was so sick I wasn’t thinking clearly.  But we made it we made it to due date and then we made it pass the due date.

I was beyond ready (as any 41 week pregnant woman can attest to).

My very Lyme Pregnancy, part 1: the good news

When I was first re-diagnosed with lyme in 2011, I remember feeling this crushing sense of thinking I would never have a child. Five years later, as I hold my daughter, I am amazed that I have made it this far.

My Lyme journey began with that tell-tale sign of a bullseye rash in 2002. My doctor gave me 100mg of doxycycline for one week. I took it as prescribed but didn’t take the diagnosis seriously, even though Lyme had recently killed the nephew of an acquaintance in Colorado. Besides that there wasn’t Lyme on the east coast. I knew that, my doctor new that, everyone knew that. Duh.

Over the next few years, my health began to rapidly decline. Eventually I found myself in the hospital, without insurance, sicker than I had ever been in my life, with doctors confounded, and a positive Lyme test.

Fast forward a few years to January 2015. Work was incredibly stressful and I was facing some issues with students (I was teaching 10th grade English) as well as battling my own disease. While my period was late, that wasn’t abnormal. Hormones had been drastically affected by the Lyme itself and the added stress of 160+ papers, parents, and life made a late period seem normal.

February 4, 2015 I woke up famished with super sore breasts, downed a sleeve of crackers, and thought something is not quiet right. The night before, my husband and I had gone grocery shopping and on our 30 minute drive home, the song “Closing Time” came on the radio. We talked wishfully about what life would be like when we had a child.

My husband was in the shower, preparing for the work day as I slipped into the bathroom to take a pregnancy test. I had a pregnancy scare a couple months prior while I was dealing with a bout of shingles 😁, so the left over pregnancy tests were fresh in my memory. The first one read positive; it couldn’t be. I did a second test to confirm before opening the shower door and just blurting out to Sam “I am pregnant!”

As tears and water rolled down his face, I shook with excitement! I felt good! I could do this! I had recently read about pregnant Lyme patients experiencing symptom reversal during pregnancy and I was so excited at the thought of feeling really healthy and having a great pregnancy! Still, apprehensive about the increased risk for miscarriage, we tried to keep it quiet.

The next day was a snow day which enabled us to get a blood test to confirm our surprise! My gynecologist, who worked with my Lyme doctor (LLMD), had recently stopped delivering babies, so I sent out an email blast to the midwife organization in our state and started the search for a provider who would work with my LLMD. By February 8th, I had met and made a connection with a midwife and made an appointment with my LLMD.

So excited to tell our families, we decided to wait until after I had talked to my LLMD. February 10th, I went to the doctor who immediately knocked the wind out of me by his brutally honest assessment of the case.

While there was little that could be done in the next 9 months, our focus would be sustaining a pregnancy and not passing Lyme, Babesia, or Bartonella on to our child.

The next two weeks were filled with excitement, exhaustion, and slowly more and more morning sickness. Determined to make it through, I pushed and pushed until I made it to twelve weeks. At this point, I had already lost 30 pounds and was unable to keep down any necessary medication. With no positive changes to the morning sickness and the addition of daily herxing, (sometimes as many as 4 or 5 times a day) I decided to take FMLA and focus on the pregnancy.

This was my miracle, my time, and I was not going to let anyone take it away from me.

Little did I know, the battle had just begun…. To be continued.

Read Part 2 Here.