I am none of these things...I have Lyme Disease.

Wow...I am truly amazed how much time has passed since I wrote here. I suppose that is the way of things with so much happening....or not (lol).

 So I have made it through my first week of treatment and herxing. Barely. Herxing to the uninitiated is the god awful reaction of the body to the massive die off of Lyme bacteria and the neurotoxins this dumps into the body. It is a never ending cycle of killing the bacteria and detoxing the poisons. The general theory is that this takes years, the longer you have had Lyme running rampant through every system in your body, the longer it takes. The process is actually rather familiar to me as I have done it over & over in my life unknowingly, just thinking these several times a year that I was SICK. More than normal anyway.
 My Dr after rethinking my treatment actually asked me to cut the original dose he recommended in 1/2 for the first week, fearing that the reaction would be much too intense. I am grateful! Actually at the end of the first day I was running around like a crazy person cleaning the ENTIRE house, doing stuff I haven't had energy to do in months and getting more than a little anxious about any lack of reaction. It was terrifying to have come this far and still not be 100% positive. Lyme is a clinical diagnosis and like a lot of people my blood tests came back negative. Had a clear MRI as well...which is great as at least it ruled out having developed MS from Lyme. But also scary when I've had seizures and other neurological stuffs. By the end of the second night and nothing, I upped the dose and about 5 hours later I was pretty sure I was dying. Lol. I went back to 1/2 the next morning... I have time and am not in any hurry, I discovered, to feel that HORRIBLE. The next two days left me with pretty much no doubt that I have Late Stage Lyme Disease. I have oscillated wildly between relief, anger, crushing sadness and hope since then.

 My main though at this point is how EVIL this disease is. As any of you who are familiar with Lyme or happened to watch Jesse Ventura's show on Plum Island know, there is irrefutable documented evidence that Lyme was man made. We have our government to thank for that, after importing  former Nazi scientists specializing in tick & mosquito borne diseases to work for us in bio warfare research. Plum Island is just a small skip across the water from Lyme,CT where this disease was first documented and named. You see the word INSIDIOUS used often when referring to Lyme, and with good reason. They created a disease that is debilitating... attacks any and every part of the body, often cripples the bearer, causes innumerable complications, comes with tremendous amounts of anxiety written into it and a doorway to the darkest places of depression imaginable. It is incredibly difficult to diagnose and even more complicated to treat. It is the most political and massively misunderstood disease in this country. Chronic Lyme is not even accepted by the medical community  and is ILLEGAL in most states for DR's to treat as they see fit. It is unbelievably expensive to diagnose & treat and unaccepted by insurance companies.So many thousands of souls across this country and the planet cannot get treatment and are suffering and dying! Not to mention that what treatment protocol's have been established are nearly BARBARIC! A never ending cycle of killing the bacteria and trying to support the body through absolute hell. Suicide is very common in the Lyme community..very, very understandably.

 So while my personal thoughts are in knowing and accepting having this fucking thing and TRUSTING in that is taking me forwards always forwards...I am having trouble believing that this is THE WAY out. I am in denial only that this suffering is the way to heal. I DO NOT ACCEPT THIS. I have been on a path of  learning alternative  medicine, spirituality, consciousness and the miraculous since I was very young. I have studied our energy systems, long known to the Chinese and India for thousands of years, my whole life. I KNOW there is a much bigger picture when it comes to health & disease than our symptom obsessive fear based Western Medicine tells us. It is my intention to seek out these answers, for myself and others. To find as better way to wholeness..because this is  UNACCEPTABLE.

to be continued...

rewriting past judgements & misconceptions.................


 I am weak, I am lazy, I'm oversensitive,  I need to get out of the house more, I'm a whiner, I am afraid of life, that I'm too sick all the time, that  I have phobias, I'm selfish I complain too much,  that  you don't believe in me, I'm a flake, a quitter, that I won't do what I say I will, the problem is in my head, I just need to learn how to think right, I just need to take better care of myself, I just need a job or a hobby, I just need to regulate my sleep cycle, I just need to change my life, I need to learn how to be happy, no matter where you go there you are, that I need to stop running away from things, that maybe I'm HIV positive, that I've done a crappy job of trying to find out what is wrong, that I just need to try harder, that I just need to have willingness, that I haven't faced life head on, that it's my fault my husband left me, that I'm negative, that I just need to jump in,  that you're disappointed in me and  tired of me....


I AM NONE OF THESE THINGS. I HAVE LYME DISEASE.

In The Gloaming

 God I love that phrase. How apropos, as I wait now in the twilight of my unknowing. Only a little bit longer to ANSWERS.... hopefully, many many many answers. I feel frozen; to talk about any of this...to make forward plans... to decide how I feel about anything... even to tell my damn therapist too much. Lol. The waiting is so much harder than I ever would have thought... I mean, my god, it's not like this just started...what's another week or two? Mentally I can work myself out of it, emotionally...not so much, lol.

 I'm alllll over the place this last week. Up down sideways. Everything makes me cry. One day everything is beautiful...the future shining. The next it's all shit and I can't imagine this ever ending. Often after a few days of feeling good and pushing myself, I wake the next morning feeling perfectly human...within an hour or so I start to feel my self go dooooown. I termed this the other day 'Crumbling'. I start gettin that 'wrong' feeling, then my joints or nerves start screaming...my head space goes to hell and it doesn't take long after that for my faith to start slipping. This week I am tired of being me.

 The fun new addition in the last few days is  searing arthritis pain in  my left  sacroiliac joint   (I had to look that up, been 20yrs since I took anatomy...I was pretty sure it was a real thing lol).  I'm glad I'm not in public much as i do a lot of gasping when I move suddenly. I feel old beyond words this week... my life has already lasted forever. I'm vaguely confused pretty often...I have to concentrate so hard to do such normal things. Sometimes I feel my brain just stop working...like a wall has been erected between what I know & how I can process it. Words don't mean anything for a moment or two...or I can't react in what feels like normal time to something. Sometimes my words don't come out right...or at all. Tonight was the worst that has been yet.
 I felt great all day. Working hard at organizing photos,  deleting everything tryin to clear my hard drive out  since Jordan the kind computer wizard said this was the issue.
 (As a matter of fact, I have worked so diligently at this over the last 4 days, I am writing this at MY OWN COMPUTER! It's actually letting me online...this is a first in the 4 mo's I've been here...crazy, I know.)

 Mid afternoon I started crumbling. I was extra pissed 'cause I thought maybe I had a free pass today. But... you push on. By early evening it was bad..I thought maybe a major storm was  a' comin. This could potentially have me on the couch twitching like a fish out of water until it calms down. But that didn't happen. Instead I was sitting at my computer when I started feeling really strange, like my brain was partitioning. I was trying to wait & see what was happening when Chris came in and I found I couldn't speak. It was like a giant metal door had slammed in my mind. I could think about speaking..I knew HOW to do it...I just couldn't get anything out. It felt like my mind had separated from my mouth...like my mouth couldn't remember. I think it only lasted four or five minutes but it scared the shit out of both of us. Lol. Jaysus, as they say in Paddyland.

So anyways. Tomorrow is a new day. And in case any of you are wondering, medically speaking, I'm ALL over it. I've studied everything I possibly can for the time being, know allllll there is to know about Lyme. And I'm in good hands. It's no accident that the Universe got me up here to the Lyme capitol of the world! I've found an amazing clinic that deals only in alternative methods. They work with people who have cancer and MS and the like whom have given up  on or been failed by traditional Western medicine. I feel very strongly I'm in the right place. More about this later!

"Reality is something we rise above."    Liza Minnelli


to be continued...

Meandering Mind

 So, as I am determined to keep at this...you must meanwhile forgive my mental wanderings. I would have been writing looong ago if it weren't for some of the 'handicaps' I deal with now. Brain fog (quite literally a medical term, also heard it called, appropriately, mudbrain) has  inhibited my natural abilities. My intention in going to Louisiana had been to write like MAD, fueled by my love for the place and the last few years of my interesting & unusual life. Lol. Instead I mostly wandered around in a fog for 2 years...hoping it would just get better already!
 Anyways, I will do my best to be coherent with my thoughts and storytelling! Back to my 1st post.... at this point I have a couple of weeks still to wait on the BIG tests. That'll be the results of the Lyme testing and also neurological issues. So while I'm not QUITE there...I am sooooo much closer than I ever have been. I'm hesitant to really get into details until I pass that point; wasn't going to start this at all until there is proof positive...I'm sure you understand. But at this point I am 99.9% positive that Lyme is the issue. It is much much more common that anyone knows, most people just don't have any idea they have it.
 The waiting is hard...I  feel enormous relief at finally getting to this place, but I have days that I'm scared... what if it IS?  What if it ISN'T?? What if it turns out that I'm just wired wrong? I cannot tell you how many days of my life I've not been able to imagine anyone feeling like I do most of the time. I don't mean this from a place of self pity, I really have never been able to understand what the hell's wrong with me! To wake up and feel GOOD, everyday...to take that for granted, and know that your body will do whatever you need, is more foreign to me than I ever realized. Most of you that have known me for years and years have probably been that person at one point or another to say 'Why are you so sick all the time?' Everyone has. Believe me, it hasn't been from a lack of trying to get to the bottom of it.
 How do you diagnose something that most Doctors don't know of, or believe, exists? I truly believe it is the miracle of the Internet that has changed the face of Lyme...the ability to do OUR OWN research is putting the power back in our hands...thank you Universe!
 Since I first came across  comprehensive info about Lyme in June, I have spent countless hours researching. It's  mind blowing what's out there! There are wonderful resources. If you are interested here's a few:


~http://www.facebook.com/UNDEROURSKIN
This is a phenomenal documentary that I hope changes the way the entire world sees! Check it out =)

~ www.lyme.org
~ www.lymenet.org
~ www.lymebytes.blogspot.com






to be continued...


P.S. thanks to everyone for all the LOVE & SUPPORT <3

There's Nothing Wrong With You

Today.... Not such a good day. Mentally? Pretty ok. Physically....ugh. Right this second, my hands are burning. Yup... feel like they're on fire. It's a nerve thing. I've come to recognize these oddities for what they are and also see.......way back, when they were happening & I had no clue what was going on. Mid afternoon toady hit with the detox-y feeling of feverishness, achey flu stuff, headache, and flaring nerve pain. This happens all the time... it's been going on so long for me I'd convinced myself that everyone must feel this shitty all the time. That or never ending seasonal allergies are REALLY a bitch. Lol.

I've always been an sensitive person...to subtle things. Moods, vibes, underlying currents.. .general energies. I went after that part of myself in my teens...studying clairvoyance, learning everything I could about Energy... developing our psychic abilities...

Chakras... Eastern Medicine, Alternative Medicine... energetic healing... I see things from that perspective. I have always known the BIGGER picture of health.... body/mind/spirit. I'ma healer for chrissakes! I know that when my body is wiggin out, that there is quite literally an energy storm happening. This helps! It's gotten me through this so far... through occasional crazy migraines, through my limbs freaking out etc etc etc. I am incredibly lucky..in so many ways, but the main being that I have skipped ENTIRELY the main process that most people go through finding out they have Lyme... 'chasing diagnosis-es'. People do it all the time...go from one Doctor to the next, and I honestly speak of this with empathy...these people are scared. They KNOW something is wrong with them and yet continuously find no answers in the phenomenal medical community we have here in the U.S. Most persons with Lyme are misdiagnosed...at least a few times! They are told they have Chronic Fatigue, Rheumatoid Arthritis, Fibromyalgia, Multiple Sclerosis or ALS, Lou Gehrig's disease, or any number of other things. Or even most commonly, after blood work, such as myself....'There's nothing wrong with you'. Soooooo many are told that they need therapy for whatever is causing them to crave so much attention. Really.

to be continued...

Illumination

Today is a new day, a better day and I am grateful. Today I am finishing off Chris' fabulous painting job in the living room... turning our space a lovely shade of new growth pale green. Today my head is clear enough to finally...finally begin this blog.

Yesterday. I woke from strange and disturbing dreams, a common thing, but something I'm used to shakin off. Yesterday was different. When I walked downstairs...my sense of the day was that SOMETHING was wrong. Not that occasional wake up-dread that we all have, but off, askew, twisted somehow. I only had to look in the mirror to confirm this. The lines in my face looked deeper than I've ever seen, my skin pale, my eyes dull and way too old. I drug myself through the morning...feeling just plain wrong.

I knew I only had to make it through the afternoon...it was a BIG day. The day I've been heading towards for the last 2 months since my whole life has changed; the day perhaps I've been heading towards my entire life. I was finally going in to give blood for to be tested for Lyme Disease and it's co-infections.

When I first got to New Jersey in late May; beginning yet again, a whole new life, I was feeling pretty good. New love...new beginnings. Pushing my body hard and enjoying every second of setting up the first house I've been able to call my own in 6 years. Over the next month I began to have problems and was feeling worse and worse.

For the last 5 years (after a lifetime of Dr after Dr after Dr and getting nowhere) I've been being treated for very severe allergies. It seemed to be helping a bit but too many things didn't seem right and I was experiencing things I did not know how to name or put into words. I mean seriously, there is no handbook that says "If you are having weird shooting nervy pains that come and go and move around all over: do THIS". I had been having intense pain in my joints...but randomly and honestly, I just sucked it up. Everyone has aches and pains yeah? My allergist told me nerve pain was common with mold allergies....'Here have some more steroids". Lol. I had been doing research on my own, when the brain fog lifted enough to think at all. Nerve pain, nerve disorders, ALS, MS, Parkinson's, muscle pain, joint pain....and what my sister Kendra had suggested, Lyme. No matter how hard I looked, I kept striking out. Nothing matched up. All of these things had specific criteria that just didn't fit. It was so confusing my head ached with it.

After a month or so of getting worse, Karlee asked me about Lyme again. This time I hit it! What I'd been seeing is the info most of us are familiar with: You get Lyme from a tick bite, you get a rash, you get treated with antibiotics, end of story. What I discovered, that an amazing amount of people already know, is that there is a HUGE side to Lyme that we never hear about. People who have it, don't know and then the disease progresses into something altogether different and insidious. Lyme in it's late stages is called 'the great imitator'... it looks and acts like a huge variety of diseases and symptoms. And get this: no two people that have it are the same. There are something like 500 documented symptoms and more showing up all the time.

to be continued....