Sunday, December 12, 2010


I am fucking scared. I haven't been feeling well the last 2 weeks; hardly getting any sleep for a variety of reasons (and I mean over 4-7 hours, getting under 11 hours a night is like 2-3 hours for most healthy people), probably overdoing it a lot, and now my body seems to have latched on to some weird downward spiral that scares the shit out of me. The kind of fear that I am TEETERING. You know teetering on the edge like a tightrope or inbetween a seesaw, or wait a jigsaw, no a seesaw, my brain cannot function right now and word-finding problems is one of the scary things that lets me know Lyme is acting up in my brain...anyways, I am teetering, feel like I was getting SO much better and doing so well on the IV meds, and FINALLY my stomach and pancreas allowed me to keep taking IV meds consistently without stopping or just infusing every other day without stopping...

But now I've had to stop meds consistently for a variety of reasons listed below, and I'm teetering between hope and peril. What seems like life and never ending illness. One one hand, hope towards wellness and TRUE belief that I can get through this or any illness no matter how many years it has eroded me. On the other hand, I peer over the corner to the other side and see a SHARP dark drop into the abyss, a black nebula where you barely have the energy to put a plate of food in the toaster oven or wait for it because you're exhausted and your head feels like it's spinning and your brain is being mashed up in a blender every time you turn your head or move, and the nausea is so intense you have no idea if you can put anything else in your body and the anxiety is so awful that you are too afraid to sit down with it and meditate because you know you'll just burst out into tears and then THOSE tears will mean I am getting worse and I am too FUCKING scared to even entertain that notion. This is just part of the years long chemo that is my life for 4 years; and this is bound to happen, right? I don't doctor is on vacation for December and I need some reassurance!

It's the kind of teetering (that you other Lyme patients know all to well), where you were doing well and going upward, and think you've FINALLY turned the corner (that's why the non-profit Lyme advocacy organization is called "Turn the Corner") then something (there's always something at some point) comes in and swoops in to FUCK with your head, tears away your progress, and you think you can make it through one more physical and emotional rollercoaster (after all, all Lyme patients go through these torturous rollercoasters hundreds of times in years), and your ability to walk 10 minutes or 15 minutes or get a few groceries go to dinner or see a movie is compromised, and you feel like you are inhabiting an alien's body that is not yours and you see your friend coming back from a 10 mile run and wonder HOW on EARTH can people do that? RUN, for 10 MILES?? I can barely make it 5 blocks! But I used to rock climb and run and snowboard...what eerie planet am I living on and WHY HAVE I BEEN HERE SO FUCKING LONG!!? 4 years is enough! I'm 33 and I want to return to normal life!

And then you want to cry again...But this neat old outdated defense mechanism our body developed called "fight or flight: causes us to run the other way (despite years of knowing to face those feelings and many spiritual texts and meditation classes encouraging one to do so), away from the anxiety, the fear, the sadness inside for the loss of so many years of my life - almost 5 years for me - and you avoid the pain until one day, like a champagne cork, it EXPLODES and you burst into tears for no reason over your computer at, oh say, 11:44 pm, and want to throw yourself under the table in the fetal position and have someone wake you from this horrible dream that is your life. But it's not a dream. It's real.

And then I remember that I HAVE to keep believing, no NOT just believing, but KNOWING, that old Mona will return, that she is on her way, slowly but surely, or even speedily, because I do believe in miracles, though right now I believe in Klonopin and Neurontin and that's about it. You know what I'm talking about Lymies, pop that Klonopin and Neurontin for sleep and the Lyme creatures that make you feel you will vomit through your head subside til morning. Ahhhh...

If the feeling like crapola is attached to herxing (See definitions on side for newcomers) and treatment, I at least know WHY it's happening. Even then it's hard, but I can have some rational understanding of what is going on. But I have no idea what is happening. And my overanalytical lawyer brain cannot handle NOT KNOWING. I went through NOT KNOWING what was wrong with me for so many years and that was such a fearful place, watching your body erode and having over a dozen doctors tell you there is nothing they can find wrong with you.

I think I'm regressing because I have been off and on IV meds erratically over the past 2 weeks. My pancreas and stomach issues resurfaced a little, so I had to take a few days off IV, then I always take a few days off before flying so as not to feel like complete death on the plane. I am flying back to cold snowy, suburban Michigan tomorrow, to stay with my parents for 2 weeks, visit my 90-year old grandmother, and mostly, get some rest and get in the IV treatments at a rapid pace. I don't think I could keep up with them so rapidly here because then I couldn't function (at least for the first part), so I have my parents to get everything and I can just lay in the recline position and hammer my body with IV meds and kill of those nasty little Lyme bugs...stopping treatment so quickly can often cause the bugs to get resistant or cause a relapse. I don't know what is happening but I've been under a LOT of stress the last month (aside from the regular being ill and financially ruined)...other stuff...Stress is a BIG no-no for any illness, but ESPECIALLY Lyme.
SO my self-prescription is to RELAX, decompress, and meditate, and nurture myself.

Anyways, please I ask you, dear blog-reading community, to say a little prayer, or ask some higher being above, the Universe, whoever you believe in to send some light and some love and to keep me going and make sure I turn that corner FOR GOOD. I am so close, and then I feel so far away again. I think I am also probably subconsciously emotionally freaked the eff out about going back to Michigan, where I spent almost a year totally depressed, attached to an IV pole for 6-8 hours a day everyday living in a suburban neighborhood with my PARENTS every day and looking forward to Target outings for fun.

I remember being there and being SO ill for most of the time (not all of it), but more so just SO isolated and alone, and being at the end of my rope, so close to the end I didn't want to go on anymore in this world, and I'm not embarrassed to say that because most Lyme patients I know have been there and it should be acknowledged. I remember crying under yes UNDER my bed so many times, feeling trapped in that house, in that life, and that I would never be well again or be able to live in SF again....but with the help of my fairy godfather/friend who loaned me money, I made it out here and have been IMMENSELY HAPPIER....and I haven't been to Michigan since I left in September and I'm sure some part of my body is scared to go there again and be in that environment and be reminded of the absolutely worst year of my life....not to mention the dark dreary sunless days and snow, oh and speaking of snow that reminds me of laying in the backyard at 2 am in he snow in my snowpants one night crying on NYE while my parents were at a party and I was home alone and ill...ugggh bad memories..suppress suppress!!

OK, I hate airports (let's see I'm sure TSA will inappropriately frisk my picc line in my arm, I'll get into a battle with them, they'll question my 800 bags of IV meds, syringes, needles, 800 medicines, and ask if I'm a drug mule OR part of Doctors without Borders. I wish I could say the latter). I also hate when I'm too weak to walk through the long security lines and get a wheelchair and EVERYONE STARES at me like some freakshow as if to say, "Why are YOU in a wheelchair? You're young and healthy." HA!! Looks can be deceiving, I deceive my friends and family all the time. Nobody knows what is going on inside...If I had an NYSE ticker on my forehead sometimes (esp when people said "You look Great!)," it would say, "I feel like I'm going to sweat through my clothes from my fever and then shiver to death from chills and I want to barf on your shoes. Is that OK? I only look great because I put nice clothes on and makeup and blew dry my hair to assimilate as a normal person in society!"

Alright, happy holidays people. BAH HUMBUG.


  1. Hot DAmn girl do I feel you. I am on round 3 or 4 or god, I can't remember, damn lyme brain. Hang in there. It will turn around. Bentonite clay bath if you can. Sweat your ass off, whatever way you can. Breathe. Distract the hell out of yourself. Watch the entire 6 feet under series on Netflix. Just detox, detox, detox, and distract yourself until you get through it. Your post reminds me of my severe Bart herxes. I think, it's just a herx- a healing crisis. A good thing. Hold tight.

    I feel like I have developed PTSD, post traumatic stress disorder, from Lyme. Every time I get a slight increase in symptoms, my mind leaps ahead- I'm going to lose my job (again). I'm going to rack up another 15,000 in credit card debt for treatment. I'm going to lose the ability to write, to run, to parent, all my friends, most of my family, my ability to do anything.

    Many times, the herx passes and things go on as before, the crazy fight or flight response, just that. I say to myself as the toxin overload eases, welll....that happened.

    Keep a list of treatments you haven't tried yet- Ondamed, rife, cowden, buhner, Tindamax, whatever you haven't tried yet. The list keeps you sane, tells you that there's always another option. You're not done til you've exhausted the list.

    And when all else fails... throw things off the second floor porch.

    Hang in there girl. Wackiness and good times await you. I see the light at the end of the tunnel for you, even when you struggle to. Noone with your amount of fight stays sick forever. You will come through this, because you have work to do, important, amazing things yet to do in this world.

  2. PS- My gorgeous son with congenital Lyme only started treatment two years ago. Great progress, then regression after we stopped antibiotics. Then slow progress back on.

    I got scared a few weeks back, he started failing all of his spelling tests, getting confused with everyday tasks, lost his reading ability. Two weeks of Tindamax...two weeks, and he got a 100%. He's an emotional wreck, but the cognitive gains are nothing short of miraculous. If he can come back from the brink, you and I can too.

    Hang in there.

    PPS- I'd ask you to take my disability case on, because you'd kick ass and take names....but I won't be needing it, damn it, because I plan to knock these bugs out of my body and get on with what I'm really meant to do. And so will you.

  3. Anonymous,
    I love you! I needed to hear that. It could have been me giving that advice to another friend a month ago, but you know how we need someone to pull us out when we fall down...remind us that nothing is more powerful than the dedication to fight. It feels like a Bart rebound for sure, so I'm restarting IV Leva and IV Doxy this week...ayyy.

    I love your attitude and thank you so much for the pep talk...also I LOVE throwing things off the porch. How did you know this? I guess all Lymies do. :))

  4. I love your attitude! That's how I know it's the Bart talking. Come on over anytime, and bring something that will give a nice satisfying crunch when we throw it off the second floor porch.