Tuesday, May 10, 2016


May. Mornings:

On certain mornings I still wake up locked in sleep paralysis. It's a sluggish, weird thing, not the greatest omen for the day. Once my mind is awake, I begin the uncomfortable process of reconnecting it to my body, beginning with my eyelids. I open them heavily, they fall shut. I do it again, keeping my eyes open for a few seconds longer each time.

David helps to unlock me. He brings me coffee in bed every morning at 7am. About half of the time I'm asleep in our bed. The other half of the time I'm passed out in my own room, electrodes from the TENS unit still stuck to my shoulders, the oil infuser blowing lavender steam, fan blasting, sound machine set to Tropical Summer Night. David wades carefully into the room, switching off the various machines as he makes his way towards the bed.

Dressed for work, he props me up, leans over and tilts the cup of coffee into my open mouth.

Recently, my friend Aimee sent me a mug that's tapered at the top, so it's easier for him to feed me (drink me?) without spilling. David and I have gotten used to this bizarre ritual, the way you eventually get used to most things.  He calls it, 'First sip.'

"Are you ready for first sip?" he'll ask as he enters the room, switching off the sounds of Jungle Night. After the first sip, I'm ready to drink on my own.

David's sweet but dry humor has gotten us through a boatload of misery this past year as we try and make our way through the murky landscape of Lyme Disease. One afternoon I tried medical marijuana- a god sent for many, but it sent me into convulsions. Lying on the couch watching television, I twitched like a rag doll, pressing my palms against my eyes. "Well," David remarked calmly from his chair. "I guess that didn't work."
Every morning I drive out to the neuropathy center on highway 40 to receive an hour of Pulsed Electro Magnetic Frequency treatment. The nurses there are very kind. They call me Sugar and Sweetheart. They say the headgear makes me look like Princess Leia. I lie there and soak up their maternal clucking, accepting their offers for an extra blanket or a glass of water.

My favorite is a young nurse named Becky, who has straight dark hair and is constantly chewing gum. She's sarcastic and witty and fun. When I first started going to the center a few months ago, I told her I felt like I was dying. (Melodramatic, certainly- lying on the table, whispering, a wide-eyed stare- but what can I say, other than those early days were marked by pure terror.)

"Oh, you aren't dying," she responded in the heaviest North Carolina accent I have ever heard. "But you are real messed up."

That's what I like to tell people now when they ask how I'm doing. "I'm not dying. But I am real messed up."


Please consider helping me fight my battle against Neuroborreliosis by clicking on the yellow button on the top right of the screen. I am five months into one year of intensive and incredibly expensive treatment, not one dime of which is covered by insurance. I've dreamed up an elaborate way to say thank you.   


Jill said...

I'm so glad PEMF seems to be working! I love your posts, your updates, your honesty on all of this horrible-ness that is Lyme. You make it beautiful, transforming it with words of light and love. And please tell David he's awesome, though I'm sure you already do. <3

Kathleen said...

Hi, I know what you are going through, I had Lyme Disease two years ago, and am keeping it at bay now so to speak.... My best advice - keep the treatment as minimal as possible. Too many lyme suffers take so many meds that it becomes more toxic to the body rather than helpful. I see you have been on a ton of stuff - consider the fact that you may be on too much. Some of the "symptoms" you are experiencing may in fact be side effects or rather, your immune system being over-resposive than it actually being lyme itself. I am not at all questioning your illness, believe me, I have been there, done that, and am a pharmacist. But as I went thru lyme disease treatment myself, I discovered that some of the herbs or medications I took were more harmful than helpful. You just need to figure out where that point is. Good luck, I will continue to follow you. I absolutely love your writing style!!

Anonymous said...

As someone who has been married much longer than you have, and I have had my own recent health scares in recent years, which cost well into the 6 figures, some of which was covered by health insurance, and a lot of it was not. All I can think is that no matter how much this ends up costing you monetarily, years from now that will be a distant memory, however, I can't help thinking how lucky you are to have such a wonderful husband and for you to know that so strongly at such an early point in your marriage.

Melina said...

Kathleen, thank you for such a thoughtful comment! I am so sorry you went through this and I hope it stays at bay forever.You are absolutely right. I jumped in with way too much gusto at the beginning, my Lyme doctor went through and trimmed down my supplement and tincture list. It's tough to read all these recommendations through Buhner, then through the forums, then from the LLMD herself, and just want to do it ALL.

This is a list that I've used up till now, but not all at the same time. Still, I'm working to taper the pharma meds in particular s- I'm down to two gabapentin every day and night (super tiny dose) I'm just not sure if the LDN is doing anything at all. I'm hoping that by this point, my diet is so rich with vitamins and minerals that I simply don't have to depend so much on the supplements. Is there anything you'd recommend that I keep/add/reconsider? I discuss all of this with my LLMD of course but I value your opinion as a pharmacist and as a Lyme warrior yourself. Feel free to email me if you have the time: thewildercoast@gmail.com