THE GOOD NEWS IS... Umm...Uhhhh...

Two things I sometimes DREAD, yet appreciate greatly.

Dentists and Facebook.

I just got home from a visit to a new, delightful dentist who believes he can help correct my TMJ and help me stop clenching my teeth while I sleep.  This will be the 8th highly recommended specialist I have seen in the last decade just for help with my teeth and migraines as a result of having chronic Lyme disease.  Good ol' lucky number 8, right?!

The funniest thing about my visit was when the dentist told me the following:  "You just really need to learn how to breeeeathe.  Inhale...  Exhale...  Have you ever tried yoga?"

So after I heard, for the first time in my life, I just need to learn how to properly get oxygen into my lungs and CO2 out of my lungs and CHILL THE HECK OUT then my pain will dissipate, I paid the man and skipped out of the office with rainbows and fairy dust billowing from my third eye.

[Geesh.  Sarcastic much?]

Sorry, I don't really want to write about my dental exam or the thousands of dollars it will cost to try the latest and greatest remedies for my "stressed out" jaw muscles.

[Whew... We don't really want to read about it either!]

Instead, I feel a great demand upon my soul to write about the receptionist I met in the dental office and what I read on Facebook when I got home.  Warning:  I'm not being urged to write about the following topics because they are funny.  I feel a responsibility to share with anyone who will listen because those who need to be heard are too sick to make themselves heard.  Now, pretty PLEASE read on...

Before I left the office, Grace, the receptionist (who, by the way, is one of the most gracious receptionists with whom I've ever had the pleasure of speaking) gently and thoroughly explained the reasonable treatment costs and with a bucketful of genuine empathy said, "I understand if you need to think it over at home, and I understand if you just want to get started yesterday."  I had talked with her on the phone before making my consultation, and Grace knew I'm feeling a little more than desperate to avoid dentures at 42 because my perfectly good teeth are being chomped out of their gums.

I laughingly told her it was part of my evil plan to visit every dentist in Northern Virginia to let them know one of the symptoms of chronic Lyme disease is uncontrollable clenching or grinding of teeth.  She politely giggled with me, then got very serious.

"You have Lyme disease?  Can you tell me how you found out?  I think my daughter who is in the hospital as we speak has Lyme, but no one will believe me.  Not the doctors and not my husband.  Well, my husband is just too busy to read everything I read so he doesn't understand the symptoms like I do.  What were your symptoms?"

The conversation that followed is similar to many (more than I can recount) I have had with friends, neighbors, strangers and on-line pals since 2009.  I list the symptoms I had and have, beginning when I was 15 years old, and as briefly as possible, tell about my medical journey (nightmare) beginning after my son was born through today.

Usually, when I list my top 5 worst symptoms, the person with whom I'm speaking starts nodding their head vigorously, or conversely, their mouths fall open.  Grace stood stunned as I listed every symptom her 23 year old daughter has suffered from since she was in high school.  Migraines, heart palpitations, joint pain, fatigue that doesn't get better with rest or exercise, TMJ, brain fog, short-term memory loss, anxiety, depression, feelings of hopelessness, pain that seems to 'jump' to every muscle and bone in the body, crying jags, inability to articulate thoughts clearly, ringing in the ears, hearing loss, blurry vision, stomach issues, nausea, vertigo, dizziness, low blood pressure, swollen glands, panic attacks, shortness of breath--aka air hunger...

"Oh my God.  ALL of those!  My daughter never completed high school.  She's been to the Mayo clinic!  They told her she had polycystic ovary syndrome.  Some doctors told us it's all in her head.  She's in the hospital now being 'treated' for POTS, but she gets worse everyday!  I KNOW she has Lyme disease.  How do I get her tested with the right tests?  Oh my God.  Is the Western Blot test all we've got?"

It was as if hearing all of her daughter's symptoms listed like that made it perfectly clear that she needed to trust her gut instincts.  She knew what was wrong with her daughter--all she needed was someone to encourage her to trust herself.  Doctors are amazing, dedicated, hardworking individuals who save lives everyday, but they are not all-knowing Gods.

This is when I try to share hope with anyone who will listen.  And not cry.  This is the part of the conversation where I say, "Not only am I recuperating, but I have dear friends who have recovered from this disease after having seizures, MS diagnoses, temporary paralysis and brain aneurysms.  Your daughter can and will get better... she just needs the NEXT BEST STEPS, lots of support, and a doctor who knows WHAT THE HELL LYME IS.  (I use CAPS here, because I'm so upset, but I promise I never scream at these precious folks)

I told Grace the Western Blot is terrific if you get a positive result... that means you have Lyme and some doctors can actually read the test results properly.  Whoopie!  However, if you get a negative result, you have no idea based on the test alone because the test has a 70% false negative.

I shared the name of the only lab I know of that has been reliable and asked Grace to please, please email me for more details on the handful of Lyme Literate doctors in our area who are good, moral people not wanting to make a fortune off of the most desperate sufferers.

We hugged.  Then I drove home.

I logged onto the computer and wished a few friends Happy Birthday on Facebook, and then I checked in with my Lyme groups since my heart was heavy and needed some inspiration.  I belong to two Christian support groups for Lyme sufferers.  We pray for each other and remind each other how it's our greatest freedom to choose God in the midst of our suffering and to rely on Jesus to work through us, even in our diminished state.  A total of 3,303 people make up the membership of these two precious groups.  Occasionally, the need to pray for each other is greater than I can fathom, and I become overwhelmed and angry because of all the silent suffering.

The following posts are all from this week.  I asked my fellow FB prayer warriors if I could share their words here.  More than just a smattering of the Lyme community needs to hear the desperation of these voices:

“Tired of feeling like a burden. I know that people have offered me their numbers. But I've always been shy about calling people, especially just to cry or complain. So I sit here, crying, feeling like my end is near,... I hate that my life came to this point. I'm such at a loss for words. If it weren't for my kids, I'd end it all right now. I'm sick of fighting and explaining myself to others. Being misunderstood. No value to society.” --Sarah 

“Say a prayer for me, I've ran out of money for any and all medical treatment. No job, all I can do is hope and pray for my disability to be approved. Honestly, I'd rather God just let me die than continue to keep me here suffering and being a burden to my family.” –Crystal

“If any of you feel led to pray for me I would be very grateful I am really struggling with my illness as well as issues with family abandonment and grieving the loss of my pet 10 days ago I truly feel so very alone thank you all for your thoughtfulness and your kindness God bless you♡” --Rachael

“Ever feel like it's too late? Like, yeah I may have the answers now as to why I've been suffering all my life. Why I've been so misunderstood... Yeah I have metal toxicity and Lyme and coinfections. But, without the strength or family and friends support, I don't have strength to fight anymore. My heart aches for my kids, my family, and everyone I've let down, due to my illness my whole life. I feel like I'm dying now from this respiratory illness i have. I'm very weak. The only person that even helped was my abusive EX, ! Imagine that. He bought my heart med for me and brought me fluids. Nobody else in my local area so much as offered to help. I feel like an outcast and a burden. I don't enjoy anything anymore. When I think of my beloved kids, I smile, then break down crying. I can't explain. I'm not as strong as some people are. If life is survival of the fittest, I'm a goner. I have nothing to look [forward] to except uncertainty. I've been sick and misdiagnosed and misled and misunderstood my whole life. I can't take it anymore. Not strong enough... I'm too scared to die. Too scared to live like this either....”  --Mary

“I'm sure if you all are like me, my memory comes and goes. One of the saddest things I'm losing are all the Scriptures I once knew. I find myself trying to talk to me kids about verses I once knew but can't find the right words or remember where it's found.....”  --Cindy

“Y'all please pray for my family. This disease has been throwing things at us for almost three years and my bucket is getting full. Trying so hard to stay positive but every corner we turn exposes another problem. Not sure where I am with this anymore, three years and things have barely changed. The part of me that I could depend on has been chipped away at for so long that what's remaining is just a skeleton of what I was. Three of us have lyme and I have given my problems over to the Lord but it does not make excepting this any easier. Confusion, anger, frustration, sadness, etc seems to be taking over. Thanks for listening.”--Rob

“I'm at my witts end. I've got Lyme, not sure on co-infections right off hand, hypothyroidism, low DHEA/adrenal fatigue, and who knows what else. My energy is zapped. I need to have surgery on my foot again. I try to help around the house, but I've got two under two and have no energy to take care of myself let alone my girls. My husband is the only one who works....I just told him to leave for a while since he was swearing in front of our girls and our oldest is 17 1/2 months old. 
He is all pissy cause I don't do all of the cleaning and he is saying that I'm now using the evening sick as an excuse.
I told him at I don't want to be sick and he blames me for being sick.
He is also [threatening] divorce.
I just don't know what to do any more.”

What are we, as a nation, going to do about this?  Do you think people who suffer from Lyme should have to pay out-of-pocket for even the simplest treatments?  Lose their homes, their dreams of college, lose the ability to even leave their homes?  Do you think it's a travesty our DOGS can be protected and treated for Lyme, but humans cannot?  Are you curious to know why so many chronic Lyme sufferers who are told they "just have a mental illness" commit suicide?  Do you want to help this community of fighters?  Email me if you'd like to know how.

Thank you so much for reading.

Love,
Ginny

Learning to Roar While Learning to Heal

If I had read this quote several years ago my reaction to it would have probably been something along the lines of:  "Ppppbbbbtttttttthhhhhh!"

I would have blown raspberries at this beautiful lion, y'all.  I would not have related to the "try me" mentality at all.  "You want me to dare the world to TRY ME?  Are you crazy, Mr. Unknown?  That's like climbing monstrous, snowy mountains with sherpas and extra oxygen and things called crampons.  Try me is for those spirited [read: crazy] folks whom I admire, but also secretly think are reckless and irresponsible.  I'm a wife and a mother of two.  We don't dare the universe.  Just like I don't desire to bungee jump or ski black diamonds anymore (okay, I never wanted to ski black diamonds).  We wives and mothers are sensible people.  We thank the universe kindly and offer it a break-n-bake chocolate chip cookie.

Today, however?  I look at that lion and I notice he has a little red in his mane, like me.  His eyes are bright and filled with wisdom.  He is smiling.  He could use a good combing, but he's more than a respectable lion.  He's been through some tough stuff, that beautiful, shaggy lion.  And when he's PUT in another tough situation (notice he doesn't go looking for them--he's too grown-up for bungee jumping too) he takes a deep breath and blinks, "I've survived more than this.  I will do my very best to thrive in this tough situation too."

I think the more tough stuff we endure and survive, the more ready we are to brace ourselves when the next life-tsunami hits.  However, this doesn't have to mean we become more fearful and paranoid.  I've gone that route--it doesn't prevent a darn thing from happening--but it's a fabulous way to suck up all your time and energy... and lose sleep... and create health problems... and ruin your complexion.  (I mean, if a girl has to have sooooo many freckles, can't she at least not have to deal with adult acne?)

Becoming a "try me" kind of person doesn't happen overnight or happen automatically after a certain number of curveballs to the gut.  I think one must make a conscious decision everyday to become stronger after thoroughly inspecting the alternative.  (Trust me, I've inspected it with a microscope and a few bottles of wine--the alternative sucks).  And I so wish I could save all of the people out there who haven't yet experienced their curveballs and gut-wrenching life surprises by just telling them it's easier on their heart and soul to do things like Trust God and Have Patience.  But it takes experiencing it themselves before Worryholics and regular-spirited folks decide to put on their parkas and face the ice mountain without fear.  I've heard all too often, "My life is just so perfect right now.  I'm taking Wellbutrin because I can't stop worrying about when something bad might happen to mess it all up."

I wish I could tell those folks that even though something WILL happen to screw up the current perfection, there's no use worrying about it.  The only preparation God has given us for the things we cannot foresee or even the things we cannot fathom is trust in Him.  The broken-record message he sends in the Bible (and then through miracles when we're least expecting them) is Do Not Fear.  I've wondered numerous times in my 42 years how He expects us to do that in this crazy-scary-awesome world we live in.  But then my "perfect life" has been reinvented so many times that I think I'm finally on to something.  Just listen to Him, Red.  He really knows what He's talking about.

__________________________________________________________________

In August of 2012, when I arrived home from a trip to Mexico with two of my soul sistas, I was refreshed, filled-up, rested and grateful.  I was also freckly and tanned!  I risked melanoma by allowing my bathing suit-clad bod to hang out in the sun wearing less than Factor 100!  I was going to return to my family and share my bright smile and new (3,000) freckles and cause my hubby to pull me aside in a private moment and whisper, "Hubba hubba...  There's the girl I met on the beach in California!  Let's ditch these kids for a few hours--whaddya say?"

Instead, I was met with words I never thought I'd hear from my spouse.

"I'm not happy."

Those three words, and the way they were said, hit me like a sneak attack of venomous snakes.  I flushed.  I fought throwing up.  I thought (prayed) I was hallucinating.  I desperately tried to catch my breath while my heart did its infrequent flippy-flop thing it sometimes does.  I became hyper-aware of how vulnerable I felt in my Riviera Maya halter top and short-shorts and millions of freckles.

I asked all the questions one asks in this situation... What did I do wrong?  How can I make you happy?  Is there another woman?  Can't you see we've (probably) reached the light at the end of our tunnel?  Will you go to counseling with me?  Don't you know how much I love you?  How long have you been unhappy?

The last question may sound a little ridiculous if you know much about my 15 year marriage history.  My then-husband and I had held on to one another through some rough patches.  Actually, I thought we had weathered several near-disasters with grace and love that was binding us closer together:  a newborn baby with sleep apnea who didn't sleep more than two consecutive hours for his first year of life; three miscarriages; another newborn baby with sleep apnea, colic and "sensitivity disorder;" my cancer and late-stage Lyme diagnoses in the same month; Lyme diagnoses for both of our children; trips to specialists at Children's Hospital, DC, Connecticut.

So, yeah.  On paper it looks like a pretty miserable 15 years... I've never listed it out like that.  Ick.  But truly, there were amazing moments of joy throughout.  I see how God gave us those moments, like wide, smooth, beautiful stepping stones through a freaky river, to hop across to the other side.  Still, you could say we had more than our "fair share" of tests over the course of our marriage, but I had myself convinced we were both on the same page.  We were survivors because we took on the challenges thrown in our path together.  When we'd argue, I'd confide in a close friend or two and often remarked, "If our marriage has survived the past _____ years, we can get through ANYTHING!"  And I believed it with all my heart.

Was that daring the universe to TRY ME?  No, I don't think so.  I just figured we'd made it through the firestorm and were bonded eternally, as soulmates, having earned our scars and stars and colorful badges only we knew existed... so romantic... and we appreciated each other that much more.

Not so much, eh?

But now I can look back on that horrifying, excruciatingly painful day two and a half years ago, and I don't see the dissolution of true love throughout the world or the "real truth" about what we call soulmates.  I definitely don't say, "Why me?"--at least not anymore--because I wouldn't be who I am and who I was meant to be without these experiences.  I look back and see a naive, but stubborn woman who fought for her marriage and her family as soon as she could see the damage her husband had hidden so very well.

Don't get me wrong... I was almost obliterated over the months that followed his "reveal."  Honestly, it was the first time in my life I found myself saying, "THIS. IS. NOT. FAIR!  How do I survive this, God?  I'm willing to do anything to make it all better, but he's ALREADY GONE?!  He tells me he's unhappy and he's moved on when I can FIX IT.  This is, I repeat, NOT FAIR!"

I would scream it into my pillow at night.  I would cry it into the telephone while hiding in my walk-in closet at 2 in the morning, asking him why he wouldn't let me fix it.

But it wasn't something I could fix.

I now see myself actually grin when I recall parts of that day 30 months ago when he told me the truth:  when I tried so desperately to breathe deeply to calm my nervous system--something yoga had taught me--but was unable to take a deep breath because a yoga stunt on the beach in Mexico left me with a pulled chest muscle.  I can grin because of how hopeful I was to nail that yoga pose on the beach and how the pulled muscle prevented me from being able to calm myself down during a crucial time when extra oxygen was needed.  The irony is funny.  Yoga-induced inability to calm oneself.

I can grin because my pulled chest muscle healed just fine.
I know my heart muscle is stronger.
It will heal too.

My yogi soul sista rocked this pose without injury--she's a teacher now!

At first I thought this was a throw-away pic--I was losing my balance while trying to hold Tree pose.
Then I noticed the reflection of the sun over my heart.