Solid Grapes

Living with Lyme & Co. is somewhat akin to having a dozen frat boys move into your house and become your new roommates - only not nearly as much fun.  Once Lyme has taken root and made it clear it's here to stay, you feel like a bomb has gone off in your life.  Bits and pieces of a life once well-lived and cherished are strewn about everywhere - but at that point you are just too exhausted to care - or even notice.

Getting through the day is hard enough...but returning phone calls?  Answering emails?  Doing anything that is not absolutely necessary? Probably not going to happen -  and not because you don't want to but because the energy it takes to perform even the simplest of tasks evades you.  Lyme literally sucks the life out of you until there is no life left.  In it's place is a shell of a person surrounding by collateral damage - unrecognizable shreds that were once your family, friends, laughter, joy, holidays, fun.  A beautiful life...poof, it's gone.

At first, the people around you are so wonderful and understanding, offering a helping hand and words of encouragement.  But as days turn into weeks, and weeks turn into months with no improvement and very few answers, sympathy wanes and people start to wonder.  Is she really sick?  Does she just want attention?  Is it "all in her head"?  Is she crazy or abusing drugs - or both?  Or is she just lazy?

In all honesty, you can't really blame them - you are sick of all of it too - sick of thinking about being sick, sick of talking about being sick, sick of having to ask for more and more favors from family and friends, sick of seeing the sad, scared looks on your children's faces as they realize that their mom is not going to be well any time soon, if ever.

As the old saying goes, you are sick and tired of being sick and tired!  Add to the fact that your doctors are all too eager to diagnose you with mental illness and prescribe anti-psychotic medication or send you to rehab...what is your family supposed to think?

It would be one thing if you had a clear-cut diagnosis, with a concrete treatment plan and a team of doctors who are ready and willing to help you fight for your life and talk to your loved ones, explaining exactly what's going on with you.  The problem with Lyme is that none of that happens.  You are lucky to even get a diagnosis - and if you do, it usually takes months and months of going from doctor to doctor to doctor begging and pleading for someone to please help you, please believe you.  You have to fight for every little thing when you have Lyme.  With the little bit of energy you can muster every day, you desperately search the internet for answers in the hopes of convincing those around you that you are indeed ill.  You are constantly having to defend yourself and prove that you are not crazy and in need of a shrink! You become desperate and hysterical which just confirms their suspicions.  And did I mention you are EXHAUSTED?  It's the worst kind of hell.

By this time, most people in your life have pretty much reached the end of their rope.  And that's about the time that you get started on your meds - which, at first, make you a thousand times worse.  Did I mention that it can take months and even years before you even START to feel better on a typical Lyme protocol of antibiotics, anti-parasitic and anti-fungal drugs?  You can imagine what this does to a family, to a marriage - never mind friendships.  Lyme is like a jealous - it doesn't want you to have anyone else in your life. Isolation becomes your new normal.  Loneliness, hopelessness and desperation plague your every waking moment.

A good analogy for what happens to your relationships once Lyme & Co. makes your body it's new home, is this: picture a beautiful bag of crisp, green grapes (organic, of course) fresh from your local grocery store.  You take out a "bunch" to wash it and immediately a few fall off of the bunch or are left at the bottom of the bag, but the great majority are still solid.  Take that solid bunch and give it a good shake.  A few more fall of, right?  Shake it again, this time harder.  Do this several more times, each time shaking that bunch of grapes a bit harder each time.  By the time you are done, you are lucky if you have a handful of grapes left - and a few of them are hanging by a thread.  Each of those grapes represent a person in your life that you lose as a direct result of this disease - relationships that would not have been lost if you had not gotten sick.  I have talked to many Lyme sufferers and this is the number one, hands down hardest thing to deal with and most profound loss.  You simply don't have the energy to keep your relationships going - and it literally breaks your heart.

If you are lucky, you have a few grapes that just won't budge, no matter what.  Those people become your lifelines.  My solid grapes kept me sane and gave me the will to continue even when I didn't think I could endure one more hour.  They listened to me, they never doubted me and most importantly, they never gave up on me, even when I didn't respond to your email, texts or phone calls.

I want to take this opportunity to thank my solid grapes.  Thank you, Dad.  Thank you to my sister, Christie. Thank you, Jessie Thomas. Thank you, Renee Wiggs. Thank you, Cheryl Piry.  Thank you Luci and Cezar Petruic. Thank you, Kate Ripple, Kathy Swindle and Leslie Bergholt.  A huge thank you to Staci Kay Smith, who is an ER nurse and also a fellow mom on our daughters' soccer team.  Staci was the first person to recognize that I had Morgellons Disease. Staci, you may not think you did much to help me but you DID!  You have no idea how much your support meant to me.  I also want to thank Dr. Edward Kilbane, the psychiatrist at Stanford who first diagnosed me and offered me compassion and hope during one of the darkest times in my life.  And thank you to Cindy Casey, R.N., Director of The Charles E. Holman Morgellons Disease Foundation (www.cehf.org) who responded so quickly to an urgent message I sent her to "Please please call me!".  Cindy was and is an amazing warrior in the fight to increase awareness and raise funds for research and ultimately a cure for Morgellons Disease and Chronic Lyme & Co.  I am so inspired by her efforts on a daily basis and I know she and her foundation offer hope to thousands of people on a daily basis.

If you are reading this and know someone who is chronically ill, I implore you to please take a moment and offer them some sunshine.  It doesn't take much to brighten their day.  A kind word, an understanding ear, even a compassionate smile can make such a profound difference to a person suffering day in and day out, feeling alone, terrified, judged and hopeless.  Find it in your heart to be one of their "solid grapes".  You might just save their life.

And please keep this in mind: Nobody chooses to be sick.  Nobody enjoys being helpless and dependent on others for simple daily tasks.  Nobody relishes letting family and friends down multiple times a day.  I find it so curious that some people actually think that you would pretend to have Morgellons Disease or Lyme or any other chronic illness - who would sign up to be a chronically ill social pariah?  Things are not always what they seem; try to reserve judgement until you are 100% sure that you have all of the facts.  Please.  To all of my solid grapes...I am so grateful.  This is me, trying to pay it forward in some small way.

To everyone out there suffering with Lyme & Co...you are not alone.  I will fight for you to the end!  Hold tight my friends, help is on the way.