Wednesday, January 11, 2012

Shelter from the Storm

It's 2am in the morning and I'm rolling in the New Year hunched over a porcelain white toilet waiting for waves of nausea to cease. Although this may sound like a typical scenario, it is anything but.

I wish I could say that I've drunken too much or even that I've come down with a stomach virus, but no, the nausea is from an entirely different malady, and is one that I happen to suffer from monthly.

 I call it "The Monthly Ten" - 10 days of hell to be exact, a period in which my symptoms become so severe that I basically become completely bedridden.

This night was a little different though, you see usually I can help myself out. Usually, I can sleep in the hyperbaric chamber which actually stops what I'm about to tell you from occurring at such severity.

It starts with a little bit of a headache - that's my queue, but I ignore it and it spreads. Within 15 minutes my skull feels as if it's about to implode from pressure, the joints in my spine feel as if the very presence of gravity itself is enough to make them crumble, the muscles in along my spine and head tighten to such a degree that I begin to walk at a very awkward and slow gait, and there is a sense of something very acidic - like battery acid pouring down my back and swirling throughout my head. 

Noise begins to bother me, light truly hurts to look at, finally my neck stiffens to stone and I feel as though I'm suffocating, as though oxygen is no longer reaching my brain and I become confused, disorientated, desperate and...nauseous.

This, of course, leads me to the bathroom, but nothing comes up, and I'm stuck. Where can I go? The hospital is not an option for me; I've been down that road, and know from experience there's nothing they can do for me. So what do I do? I whisper for my mother who is luckily awake, and she accompanies me into the bathroom where I continue to writhe in pain, she tries to talk to me but what she's saying doesn't penetrate, and I'm not making any sense. All I know is that this needs to stop, I need to sleep. So, I do the only thing I can think of, look her straight in the eyes and with urgent desperation say to her, turning my cheek to the side, "Mom, pleeaaseee - Knock. Me. Out...

Why am I telling you this story? Because it made me realize that there absolutely needs to be a place for us Lymies to go, a refuge, a shelter from the storm so to speak. A place where we are understood and helped by those who have been there. A place beyond the controversy, beyond the doubts - where people REALLY understand that we are very, very sick, a place of healing.

I've mentioned Mara Williams in a previous post named "Something To Talk About" and her vision of creating the "Inanna House" that would provide exactly what I've mentioned above. She is actively attempting to make this happen, and I (lol) actively WANT this to happen...sooo what do we do? Besides purchasing her book, "Nature's Dirty Needle" to help raise funds, why not throw a small fundraiser in her honor? 

If there's anything you can think of to help her make Inanna House a reality, please contact Mara through her blog "Voyaging Lyme" (link on left hand side of page), or by e-mailing her at

Thank you for your consideration and your support!
All my best,

PS -  If anyone has donated any amount to this site via the pay pal button and I have NOT contacted them, please let me know...


Domenica said...

Just a quick note to let everyone know that I did not knock her out but truly wished I owned a magic wand that night and even now to make the Inanna house come to be...

Sarah Lamando said...

Lol - no, my mother did NOT knock me out - she did something MUCH better. I'm 30 years old, but when that kind of pain comes on and I feel helpless, terrified, and alone, there's NOTHING like your mom being there to hold you till you fall asleep. I remember waking up the next morning and being SO grateful that it was over, and I couldn't help but call her at work, crying tears of joy, to thank her. I love you, Mom!!! I wish you didn't have to see me go through this with all my heart. One day I hope you'll see me glowing with health again. xoxoxo

Renee said...

You write very helpful and insightful posts here. So sorry you have gone through so much with this nasty disease. My husband and I both battle Lyme and its buddies on a daily basis. It is not easy. Thanks for the info here about Mara, her daughter, and her book.

Sarah Lamando said...

Thank You Renee, so happy to see that you enjoy the posts and can relate. Mara is amazing, her book, her vision, her daughter's can't help but admire that family for the courage they have : ) I LOVE comments, so - thanks for writing one!!

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