Lyme Warrior?

[lenasquest]

Hi Irish Sassy,
It's so easy to feel isolated by this disease/recovery process! Good to vent, as it reminds the rest of us that we're not at all alone in being human and being fed up sometimes. I love the phrase 'normie'. Thanks for that.

I've been recently reading about Masaru Emoto's remarkable studies of water and its sensitivities to human thoughts and words. He found out that hateful words either taped to a water container or played in music would produce ugly, deformed crystals when the water was frozen and that loving words or images would produce exquisite crystals of great symmetry and beauty. That's had me thinking about my own water content and it's interaction with all my molecules and cells. It has me choosing my words. I've put a post-it on my water urn that says 'I love you', and am trying to wrap that same idea around my whole physical self. It has brought some sort of shift. Maybe it's just that winter's ending, but I think I've learned something important about choosing a healing and healed attitude.

Be well,
Léna

[R**]

In a book I have here called, You Can't Afford the Luxury of a Negative Thought, the author suggests that if you choose to use war imagery to make sure that your imagery includes that you win the battle. Very important.

When I think in battle imagery, it send me into fight or flight. It's just automatic for me. So I don't think this is good imagery for me.

I like the ecological point of view and do find it interesting that in the most recent article in Public Health Alert about Stephen Buhner, his views and protocol, (from how I interpret it), he sees lyme ketes as possibly yes a new addition of the human terrain.

I know I have 3 sisters in law with lyme and heavily suspect my brothers in law also have lyme. A friend of mine had a western blot come out completely negative and the nurse at her MDs office (not lyme literate) remarked how strange it was that she had no positive bands as most people do.

My daughter and husband have positive bands. We have not tested my son.

So, as a mother, the war analogy does not work for me either. It is highly stressful to think of my kids in a battle. If it were cancer, I would probably feel the same way. For the sake of sanity, I suppose. And I know this is highly personal.

I am going to read the comments here more thoroughly. Thank you all for responding!

I think language is very tricky sometimes. I get the idea of repairing the battlefield. I can also see how a battlefield is a desolate place often in reality. So.. its not all black and white is it?

Robin

[R**]

I look back now and I see where my inner ecology was very disrupted before lyme or before it manifested as a problem. I was a vegetarian who lived off of wheat bread, cheese, and junk food. Some yogurt, some fruit, some vegetables, pastas. Heavy on sugar, low on good fats.

I was pregnant and nursing for 8 years. I had most likely many deficiencies by then, metal toxcity, candida. The pregnacies and nursing I am sure drained me of what I had. The stress of being a new mom was overwhelmed by the fact that my kids were high needs (wonder why) and nursed every two hours for quite a long time.. almost 2 years for one. 24 hours a day. I never slept for more than 1.5 hours at a time during these two years.. not good solid sleep.

I had POTS, dysautonomia and did not think to properly hydrate while nursing.. or any other time for that matter. I was pregant and nursed on that horrible diet.

So I look at my battlefield as a garden that needs alot of tending to. Maybe thats a good image for me. Lyme didnt do it all. Babs isnt doing it all. Its the result.

I could be wrong and I dont want to blame the victim (me/society.. low fat! Be thin! Meat bad!) and I also dont want to be a victim to a "cure unknown."

When I was told I had lyme, this was some of the most devastating news I have ever heard. I felt doomed from the get go. This cloud of doom I carry with me. It was invaded my sacred space and I dont know how to get it out. At least not with a snap of my fingers or wave of my wand. I feel contaiminated by that prognosis.

This is when I know my sister healed after being bedridden for maybe 10 years.. was it lyme.. does it matter or is LYME the EXCEPTION to all that is good? She healed after a NDE and lots of energy work and focus on balancing her ANS as well as body work on "knots" under her skin. She did all this herself. She was very gifted after her experience.

I met a woman at yoga who was also bedridden for around 10 years and she with lyme. Last time I saw her, she had been well for 10-15 years.. I forget. It just happened. Her body shifted. No one hears about these stories.

To add to this burden. I am hearing that lyme folk are good candidates for cancer. Nice imagery, huh?

Robin

[R**]

One thing we are told, Lady Barbara, is that we have crappy immune systems. Such is why our tests are often negative for antibodies. The lyme takes over the immune system. It is smarter and more stealthy than ANY bacteria out there and we have not much hope. This is the mindet, the words, the messages we hear. The Bb invade teh white blood cells and disable them. They are little corkscrew smart bombs and they are like little transformers who can and will find a way to survive and DESTROY.

Then we hear of only people who are still sick after years of abx or people who are dying or dead. People like me who have the "dreaded gene" who are "unable" to detox lyme or any other biotoxin. No perfect cure for that as well. CSM works for some; for others it is a nightmare of an experience.

Fear, doom, death. A battle that cannot be won.

I know you have won, but the argument can be that you were not chronically ill long enough to have no amino acids left in reserve like I dont have or you still had an immune system functioning (lyme is said to be like HIV) and that you dont have the "dreaded gene" so clearing lyme was easier for you.

Dont mean to challenge, just trying to be clear about what we are being told and what might or not be true.

Off to find the Hoffman article...

Robin

[LadyB]

One of the things I believe I chose to 'fight' was the Doomsday report. Words ARE very powerful. I tell the story in my web pages and my blog about how some really inconsiderate woman working in a health food store looked at my twitching, shaking self and PRONOUNCED "You know, you never get RID of it." and I felt every crumb of what was left of my immune system just CRASH. I should thank her now. She sure gave me some FOCUS. I made a conscious choice to not accept what SHE was telling me.

I've also often said that my ignorance is probably what saved my life. I gave up on doctors JUST in time before any of them could tell me that I was likely to die considering how far my neurological symptoms had gone. I can't imagine the damage that would have done.

People often ask why I don't go have 'all' the tests to 'prove' that I no longer have Lyme. Beyond the fact that I can't afford any of that, I really don't want test info. It's just someone else's way of measuring something. NEVER gives the whole story.
LadyB

[shandyM]

I am loving this discussion. Very helpful... Hopefully I can add something when my brain is working a little better!

[R**]

Thats a great way to put it, Lady Barbara. Sometimes it does help to have something to fight or cast out even, to use a more biblical term. I don't know how to fight lyme or frame fighting lyme, but I can fight this "doomsday" report if I need something to fight. And sometimes I do.

I think one of the worst things that happened to me was the climate of the diagnosis. It was very traumatic and still is. The symptoms can be terrifying, but the doomsday diagnosis really sealed the coffin.

We are in a world (lyme world) where the we are seeking validation of our illness and the right to (allopathic) treatment without fear. In the process, we have to validate the worst of the illness. There is a sense of trauma that pervades lyme world(if one delves into lyme world or is told traumatic things by others). There is such a sense of helplessness.. Cure Unknown.. stealthy, virulent bacteria.

I read in Eric Perl's book that there as a group f folks he was trying to help heal maybe from MS, cant remember. He was stumped as to why these people were not progressing then he found out they had a vested interest in proving their illness as they were pursuing a law suit. Sometimes I think in our trauma, well I know I have in my trauma, there is this sense of being invested in proving I am not crazy, that lyme disease exists, and to do so seems to mean to take on this idea of doomsday. The symptom feel like doomsday. For some reason.. maybe also because we dont hear much about the people who are getting well.

I am not tying to undermine myself or anyone else as to our reality and our experiences, but the climate we are in lends itself to hopelessness and possibly even a buying into the devastation of this disease that we are so much finding a need to prove oddly so that we can feel safe having this disease.

Does that make sense? This is difficult for me to come to terms with in my mind. I feel like I am blaming the victim by saying how I perceive myself in all this matters.. and certainly it does feel like I am taking sides with the folks (against myself) who deny this illness and go as far as to say we are making it up, and that kind of demoralizing denial can make one sick.. also sucking the wind out of the immune system. Same time, I know the doomsday perspective is making me sicker.

[Thane]

Robin I totally agree with what you've written. We really have to walk a fine line with this illness as we try to show the world how horrifying it is, but at the same time being very careful not to empower the disease as it ravages us. I like when someone i'm close to occasionally asks me how i'm doing, and I will pause and think about my situation and then tell them. But I don't like when people ask me regularly how i'm doing because in a way they are causing me to bring my attention from where ever it was back to my pain and suffering. Without realizing it they are causing me to focus on my illness and causing me to consiously think about how much it hurts to be alive and even this very acknowlegement of my illness lends it additional power. Power I would rather not give it.

[Thane]

I've noticed that some people who have lyme and talk alot about lyme are very solutions oriented. They only talk about how much they hurt when they need to to make a point about a treatment, or as they consider how it might be remedied. I think this is a very constructive and empowering way to approach lyme. But I also know others who cry and moan all day and seem to be far more concerned with convincing everyone else just how bad it is for them than they are of actively seeking out solutions. There was one person who was struggling badly and I offered to talk to her on the phone to help her organize her thoughts and give her some of my ideas. As we tried to do this the conversation kept becoming dominated by her telling me just how bad she suffered. I already believed it was bad, i've experienced bad lyme, that was already established in my mind. I was all about finding solutions, but it became clear over the weeks that this person only wanted somebody to understand her plight and was really not willing to move past that and start healing. I think for many illnesses the sufferer can wallow in self pity all day and still recover, but those of us who are really sick with lyme don't have that luxury. And if we really want to get better, more than anything else in the world, more than we want others to understand what we've been through, we need to just focus on solutions. Because I believe every emotionally charge acknowledgement of how we suffer unnecessarily empowers it.

[lenasquest]

Hi Thane,
I just posted on lymestrategies about 'yeah, buts'. They're people who want attention, sympathy, and perhaps someone to take responsibility for their woes, but aren't yet interested in proactive change and solutions. I was one for a long time, but now, much less so. Now, when I hear that phrase from others who are complaining about their lot, it helps me discern where my energy will be wasted rather than constructively used, because i don't yet have that much energy to spare (and I listen to my own speech for that phrase, believe me!)

There's a difference between venting-in-trust to fellow sufferers once in a while (a healthy release and discharge, and often done with dark humor) and the woe-is-me-I'm-such-a-victim litany.

Unless there's some new symptom plaguing me that I need to figure out, I tire of mentioning the garden-variety symptoms, as in perspective, they are so mild compared to the past, and they frankly bore me. I figure that if they bore me, they must surely bore everybody else!

On the other hand, when my son's MIL asked about my health, I told her that I had good days and bad days. She asked how many bad days a month and I said 2-3. She said that was great!, and I realized later, that I'd completely misled this nice woman; that a good Lyme day for me would probably be experienced in her life as a bad day.

This is what keeps people clueless. I've thought of simply describing an ordinary Lyme day, and at the bottom saying, "Oh BTW, this is a GOOD Lyme day.' I want people to know; those who know me and interact with me, but I also just don't want to talk about it any more. The only reason I haven't written 'the Lyme day' is I don't want to give the tedium and limitations of a normal Lyme day my full attention, as it would drag me down, and most of the time, I simply live with it, as a different norm, without noticing or minding much any more. It's really only when facing others' expectations of 'normal' energy demands that I'm brought up short by my differences and then I feel sad.

Maybe, I'll write that, simply to get it out of my mind and on paper. if i do, i'll share it, and others can add their own particular wrinkles to share with their people who should know.

A couple years ago, I wrote the names of all my co-infections in the sand to be washed away by the tide. Doing that on paper and burning it would probably be a good ritual, too.
Someday, Lyme is going to be a mere memory for us, my friend.

Be well,
Léna