METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:That's just it - I do have a lot of hurt, and anger, and rage, but what will talking about this to a counselor solve?
Well, I've been ill for 22 years, and I've seen a counselor for 22 years. I'm 30 years old now. If you know me, or at least of me from my posts and my advocacy work, you know that I'm basically insane, well -- minimally, that I have a great deal of psychiatric problems as a result of both trauma from Lyme (How I've been treated), as well as the disease process itself -- it's biological effect on my mind.
By most people's standards, I'm a pretty stable human being compared to many Lyme patients, as a result of all the counseling and support I continue to reach for.
Believe me, life is absolutely a nightmare because of Lyme Disease, but it would be harder if I didn't have an "outside perspective" who wasn't in it, like friends, family, lovers, etc.
I've educated my counselor, and I even added her to the Lyme list. She now -- thanks to me -- is actually diagnosing patients with tick-born illness, who otherwise were coming to her with problems, which weren't being resolved.
So, maybe counseling isn't for you, but I wanted to explain why it was for me, and what benefits I've reaped from it. Sure my counselor thought I was out of my mind while I was undiagnosed, and she made her share of mistakes in the things she said or suggested, but the one thing she did the entire time, was keep listening. She kept allowing me to empty myself of whatever extra weight I could unleash, even if the Lyme was still causing me to be mentally and physically ill.
Being sick doesn't make us immune to trauma and problems that normal human beings deal with, such as trust issues, relationships, fear, anxiety, depression, grief, obstacles, and the burdens associated with dealing with controversy and suffering.
quote: My daughter, my neighbor, my sister - they are all sick of hearing it (most days).
They're sick of hearing it because they're "in" it. They love you (I'm assuming), and it hurts them to see you hurting. In their hurt states, they get impatient, frustrated, distressed, and anxious -- because they're powerless. This in turn hurts you! I went through it too, many of us have. We really identify with you.
quote: I don't see myself getting over any of this though unless the people who hurt me hear me out, and certainly not while I'm still reminded of all of this every day of my life, because, once again, I am wihout a (Lyme) doctor.
E-mail me at [email protected] and I will provide you with an exhaustive list -- which I've been working on for 3 years -- of names of people who would gladly take your case.
quote: I can go round and round in circles over this, but as soon as I leave the presence of whoever is talking to me, it all comes crashing through my brain again.
And that's why we need a constant dialog of exhausting the stress and releasing the pain. We are like sinking ships filling with water.
You are standing on the deck of the titantic rearranging the deck chairs, and using a small pale to empty the water that's pouring in. This is what it's like for patients without strong support from strong people. Emotionally the pain just keeps pouring in and accumulating. Most people aren't strong when it comes to Lyme Disease, it's that simple, and those listening who are in it with us, like family or friends, get exhausted so quickly. I know it seems like they should have a stronger backbone, and that we're the ones who are "really" suffering, but we are not in their shoes, just like they're not in ours. We really can't say they aren't suffering either. And people will judge us, whether close to us or not, but it doesn't serve us to judge them in return as a means of evening the score. Resentment is like pouring yourself a cup, drinking the poison and then expecting the other person to die. Anger is ok, resentment will really intoxicate you.
Having a counselor for me is like exchanging the pale, and having the ship fitted with a water pump. The machine of counseling allows me to take all that watery emotion and pump it out as quickly, or nearly as quickly, as it comes in. I can dump it faster, thus staying afloat longer than most patients. This is a humiliating and humbling disease.
quote: I actually felt a huge release yesterday when I walked into the neuro's office, but once they called me to let me know they were not going to assist me in finding a Lyme doctor, I crashed even lower than I'd been beforehand.
This part I can absolutely help you with if you're willing. I've literally found people doctors who treated them for free, who said "Forget the bill, you pay when you can, and when you can't....it's on me."
I can't gaurentee free care, but if you invest the effort, which I know you will -- you'll be able to get into an excellent LLMD. I'm telling you right now though, you will need to probably travel and I highly suggest you not resist. Take a bus, take a train, fly using cheaptickets, or one of the charity medical transport groups (There are a bunch), or drive (or have someone drive you), and get yourself into the office.
quote: I need to forgive this guy, but how can I? He isn't even sorry. I just can't fathom that.
You forgive him, by not forgiving him. People often think that jumping over their emotions and not really sitting with it, and feeling it deeply is the way to overcome emotional pain. The truth is, you "don't" forgive, you don't push, you don't consciously convince yourself that you should do this or that, because the logical mind really only wants to forgive in order to forget, and that doesn't solve the problem.
Spend an hour, today, tomorrow -- whenever, and think about the wrong you feel someone has done you, and really feel it, without judging it. Feel it in your body, and let it just be there without trying to run from it.
I can't promise miracles, but I can tell you that feeling a feeling is the key to being free from it the majority of the time, and feeling a feeling can require repeated visits to that feeling. Sometimes we have to feel it, then put it in a box in our mind, seal it, lock it, and put it on a shelf inside ourselves, until we can deal with it again, and again -- and eventually, the feeling will leave on it's own, because we'll have listened and given it the legitamacy and right to exist, which is what feelings are intended to do.
It's your job however, to know that your feelings may be very messy, very painful, and consequently because of Lyme or other mental illness (Co-infections, Lyme, or other diseases which affect emotions), that you're mind and emotions will often be tainted and muddy, and that somedays it's best to "not" approach the feelings in a strategic way like I've laid out. Somedays just are not good to try to deal with these things, but other days -- even though not good, are better suited to serving us in facing them.
Someone told me once, if "If you want to hear the truth, then you need to be willing to stop telling the world yours, and then listen."
What they meant wasn't that I stop expressing myself, but that I let go for a moment and just listen to see if anyone else around me has something useful to share. 99% of the time, I hear bull**** from people, they have nothing of value to tell me, but that 1%, is truly helpful, and I'd miss it if I didn't take a moment now and then to hear them.
Let go of the control for just one single moment, and consider what I'm saying for a moment. If after consideration you feel it doesn't make sense to you, or isn't useful to you, then feel free to leave it. Whatever direction you go, I'm supportive -- from one Lyme patient, to another.
P.S. I think you have undiagnosed Bartonella or a Bartonella-Like-Organism, as well as post-traumatic stress (Which is because of what people have done to you, especially in regards to the way your illness was mishandled), the BLO and Lyme are likely intensifying that trauma, as they tend to do with problems that otherwise would be more manageable.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
You a nice person! You give good advice and help to people.
It is hard to "forgive" someone who has hurt you and is capable of hurting you again.
I have a similar "exercise" as you do. I've done it since I was a little girl.
I put anger and resentment in a box and seal it up also.
But I have a door I visualize in my head. I think it's Maple! LOL
It's open and there is a bright blue sky with fluffy clouds on the other side, so I guess it's floating in the sky.
I just push that box out the door and watch the sucker fly!!!
If I have to deal with that same person again I'm always so glad I delt with the garbage and got rid of it!
It gives me an inner peace to know I have the perfect place for the mean s*** that lands on me.
Because no matter how nice you are, for some reason there will be people who will be mean in some way to you.
I know - it doesn't make sense. Kinda tips the scale on the whole "treat people as you would want to be treated" thing. Doesn't it.
Blessings to you, Peedie
Posts: 641 | From So. CA | Registered: May 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I would love to see a counselor, but I can't afford one. I don't have insurance, and I already pay almost two thousand a month for my meds and supplements.
I would just like to have somebody to vent to who doesn't personally know me, or anyone in my family.
I don't deny that I have a lot of pent up emotions. I'm angry, bitter, hurt and resentful over many things in my life.
That is not all of me though. I don't want anyone to get the impression that I'm some miserable person that walks around hating life and feeling sorry for myself, because that's not me.
I'm best known by friends and family for cracking jokes and breaking out into smiles over not much at all.
But yes I would LOVE to have a counselor - an unbiased stranger to vent, rant and rave to on a weekly basis.
I would absolutely WEAR their ears out doing this
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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I know why you resist counseling; I really do! Can I ask you a question?? How did you feel after reading Metalic Blues and Lauren's post????
Whether you realize it or not, you just had the best counseling session I've even seen with Metalic Blue, or Mike????? If you do decide to go to counseling, (I hope you do, but I resist it too even though I know that it's best) I PRAY that they are as good as Mike!!!!
This is what WE need; someone who understands, unbiest, non-judgemental, and someone to yell, scream, or cry too!!! TAILZ----notice I said WE!!!! I had tears the entire time while reading this post! In the 15 years of being mis-diagnosed; the dx of 'post-traumatic stress syndrome' came up many times!! It would make me sooooooooo angry!!! Although that was definitly an incorrect dx at the time; now it may not be! OOOHHHHHH, that was hard to say!!
Dealing with Lyme/Co. Inf. is so very hard! It seems that it never ends. Family and friends try to understand, especially in the beginning, but they can't! And, YES they do get tired of hearing it unless there is someone VERY special in your life! It hurts, makes us upset in thinking that nobody cares----it's just plain hard! They DO care, they just don't know what to do for you and it does get hard for them to listen too often.
A counsler is someone you CAN talk too that will not get tired of hearing about our daily wows! After going through years of disappointment of not knowing what's wrong with us, being mis-diagnosed and even being told that it's 'all in your head'. I now believe that THAT in itself can and does cause Post Traumatic Stress Syndrome!!!!!
Metalic Blue, thank you for sharing your story as it has helped me too. Maybe you should start your own site for just talking and allowing people to vent!!!!!
Tailz, please know that you're not alone!!!! Let us know if there is anything we can do to help!
Posts: 351 | From Georgia | Registered: Feb 2008
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quote:Being sick doesn't make us immune to trauma and problems that normal human beings deal with, such as trust issues, relationships, fear, anxiety, depression, grief, obstacles, and the burdens associated with dealing with controversy and suffering.
Being sick can actually exacerbate these issues especailly with the treatment we often receive with this disease. Because of what we deal with and how long we deal with it these normal human issues that are difficult for the non-ill are even more difficult for the ill - period.
quote: feeling a feeling is the key to being free from it the majority of the time, and feeling a feeling can require repeated visits to that feeling.
An emotion is just that - an emotion - it is not something we have to act on, it is something we choose to act on. It is however VITAL to feel it - wholly - completely - not run from it but embrace it. Only then can we realize that it truly does not have power over us unless we give it that power.
This is one of the biggest factors that I finally learned in life and has been the most freeing for me.
And guess what, I learned it with a counselor!
When I get angry - I allow myself to feel anger but I also tell myself that this is just an emotion, and if I allow myself to feel it and not stop it I find that it looses its thrust inside of me. When I try to control it, manipulate it, ignore it it always grows much bigger for as an emotion it HAS to be felt - that is its job internally in our bodies.
It is when we attempt to control it that it becomes something more than what it truly is.
I liken it to a tornado.
If it starts to swell and I attempt to add internal pressure to control it that pressure makes it larger. If I instead allow it to just be what it is and just sit still and allow it to overtake me fully and dont add anything to it it comes and then it goes rather quickly and smoothly.
i will even NAME it
Ok -that was anger!!!
If you havent read the book Tuesdays with Maury - you should - anyone and everyone. It is a short book and a quick read about a professor with ALS and in his dying days one of his previous students spent Tuesdays with him learning the truth and about life, love and living. He puts this entire concept into a touchable reality in his words. Wish I had read it prior - it could have save me tons of money in counseling!!! just for that one lesson!
quote: Someone told me once, if "If you want to hear the truth, then you need to be willing to stop telling the world yours, and then listen."
Again, how true!!!! Silence allows answers! Being still brings answers and peace.
The more we resist the more we fight the more we kick and scream, the farther away it comes.
Metallic Blue, Thank you for your words!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I have a psychologist who is very open-minded to learning about TBD's. In fact, she's even admitted a few have probably sat on her couch and she didn't know it.
I send her articles, videos, websites, etc and let her pass it onto her peers and/or "suspect" patients.
It helps to talk to her about normal stuff and Lyme stuff but I REALLY wish Metallic Blue was my therapist.
I think you have a new career ahead of you, Mike! What a gift you have with words and comfort.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Mike,
That was an excellent post very supportive and helpful. For all the stuff you have been thru and are going thru you never fail to come through with advice for others.
Like Ive said before Im glad that you started posting on here again :-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter saw a therapist for two years. The catayst to her illness was an emotional trauma from a teacher who was her mentor.
She then lost all her friends due to the illness and had to be homeschooled the last two years of high school.
She saw her dreams going down the toilet. And I was her only lifeline. However, I was so much in her pain, I couldn't help her.
We both benefited from the therapy.
Her racing thoughts kept bringing back the pain and circumstances every night before she went to sleep.
One day, I built a fire in our outdoor fire pit. I had her write down EVERY hurt that she had not dealt with. She numbered them. There were pages.
We pictured each hurt as a fish hook with a line that attached to the person who hurt her. The line wasn't hurting them, but the hook was causing an infection in her.
One by one, we took each "hook" and put it in the fire. We didn't feel like we forgave, at first. But, with the act of letting go, we took away the power we gave those who hurt her.
The release made it easier to move on to the next one.
She was able to write a letter to this teacher. She didn't offer him forgiveness, because he didn't ask.
But,she wanted to let him know that he hurt her deeply, but she was moving on.
The pain will still be there, but it does not define her.
It all started with someone to guide us through the process.
You will get stronger. Let Metallic Blue help you.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I just want to let everyone here know, that none of these are quick fixes. And all of this was through my experience. Every single day I struggle with the same lessons and information I've shared here. If your intention is to "get it right" -- you'll probably never achieve that goal.
You can't forgive someone just because it's the fastest way to stop the pain. Most of us here -- I bet -- are quite numb a lot of the time. Sometimes we suppress our pain so much that when we "do" want to access it, we might know how we feel, but we can't seem to really unleash it.
Few of us feel we have the right to feel, since we're so sick, and since a lot of people in our lives really don't want to hear about that either. It would probably be different if we weren't sick and hadn't already exhausted that resource, it was then that they probably would be able to listen to a hurt feeling, or a day when we felt angry. But with Lyme, resources go fast, relationships die hard, pain gets stuffed and the body grows ill.
Even today, I have a hard time picking up the telephone to call my brother. I have a hard time calling my aunt. Even my father!
Let me tell you the wrongs I've felt they've done recently, or running themes.
My father hurt me terribly as a child, as a result of his alcoholism and various other traumatic events. He cleaned up around the time I fell ill -- not because I was ill -- just coincidentally. He's been clean and sober for 23 years, but it took him about 18 of them to really become the type of person you think people ought to be the moment they get into recovery.
It doesn't work like that folks. Just because you entered counseling a year ago, or AA, or NA, or whatever -- doesn't mean you're stable. It can take "years and years" before recovery really allows someone so ill, like my father, to get a grasp and to be able to form healthy relationships.
Well, I forgave my father. For the abandonment, the abuse, everything -- or nearly everything I thought. Recently, many of you know about my attempt to really push my recovery. For the first time I've gotten extremely aggressive with alternative medicine, holistic therapies, and conventional treatments, such as the antibiotic therapies. I've combined them, after having read probably thousands of pages of data, educating myself on co-infections, testing, politics, immunology, biology, pharmacology -- all that bull****.
So I asked my father "Dad, I've never once asked you for money, but I've come up against a real big wall and I need your help financially. I'm beginning a new routine to treat my Lyme Disease Complex, and I need enough to afford the cost of treatment.
My treatment plan is:
100mg x 2 Minocycline 300mg x 3 Rifampin 100mg x 2 Amantadine 400mg x 3 Zhang Artemisia 1 cap x 3 Zhang Coptis 1 cap x 3 Zhang HH 5-15 drops GSE 300mg x 2 NSI ALA 600mg x 2 NSI NAC 1 tab x 2 Nature's Way Alive 200mg x 1 Wellbutrin 150mg x 2 Lamictal 1gm x 2 Pentasa 2mg x 1 Ativan
I've done 72 months of antibiotics previously, but I never considered Babesia or Bartonella. I'd tried, Plaquenil, Biaxen, Amantadine, Zithromax, Vancomycin, Penicilin, Tetracycline, Bactrim and Levaquin.
The last two happened, kind of by chance. My LLMD didn't prescribe them, but those were the two drugs that appeared to change everything. I only used them for two weeks, so obviously I didn't get well, for they made me go "Hmmm." I couldn't tell whether it was Bactrim, Levaquin or if it was because I'd just completed treatment with Levaquin and Oral Penicilin. They were relatively close together. Later, I confirmed the Bactrim worked by itself.
Anyway, to avoid getting off track.......
Now, that new routine is an expensive routine! Sure I have Medicare, and Masshealth, and they pay for all my pharmaceutical drugs, but I live on Social Security, and it is my "only" source of income. The math isn't too good, is it? So I ask my father if he can supplement my funds and give me a portion. I told him the maximum that I can really afford is about 150 dollars per month, but that still leaves me short around 150$
He tells me "I'll give you 100$." and I said "Dad it has to be consistent. I have to be able to depend on you." -- he says ok.
Later, he tells me "I talked with your step mother, and we just can't do it. The best I can do is maybe $60."
Now, some of you are probably feeling what I felt. Like WTF? What a slap in the face, you know? I don't feel the guy owes me anything, and I did forgive him for the past, but at the same time, I really feel like he needs to demonstrate that he really cares be being there when I need him the most!
He goes on to tell me "Well, money is tight, and Deb and I are having trouble giving the same funds we give each year to our charities. We've even had to cut back on that."
And I'm like "Charities? Are you ****in' kidding me? Charities? What about me!? Why are you giving money to strangers, when your own kid is standing before you, begging like a ****ing douche bag, so he can pay for life saving treatment?"
I wasn't being melodramatic, I was stating a fact, and asking a very serious question!
His answer is always the same "Well I'll see what I can do." -- then..... he does nothing.
He never calls me. He doesn't keep plans when I make them, which is extremely hard as most of you know when you're sick! I call to arrange to bring him out to dinner -- not once, but probably about 10 times over this last year. Note that I'm willing to spend what little extra money I have, on him! He canceled every single time. He calls me a week ago on a Tuesday morning and says "I'm really feeling sick today, I can't go tonight."
So here I am holding my dick in my hand, and my girlfriend is like "Uh, so are we going?"
I was bringing him out to celebrate his birthday, to his favorite restaurant! Now, is he really sick? Probably, but why is it always coincidentally when it involves me? He doesn't do it to anyone else!
My brother, that's just a huge mess right there that I won't get into too deeply. The gist is, he told me for the last 22 years that I wasn't really ill, that I just had psychiatric problems because of the family environment we were raised in. Because of his own suffering, he abandoned me and anyone connected to the past, even when I got extremely ill. When he found out it was Lyme he said "I don't think so, I've consulted with doctors I work with, and they've told me, you don't have Lyme Disease, because Lyme Disease is easily cured."
I never told him I'd been in counseling from the beginning, which also included seeing psychiatrists. The problem was, none of the treatments worked. I went to Neurologists, Psychologists, Psychiatrists, Cardiologists, Endocrinologists, Gastroenterologists, Infectious Disease Specialists, you name it, and I was there. Everyone had an opinion, most of which led back to "Nothing is wrong with you, you need to consult a psychiatrist though. And I'd say "But I've been to 10 of them! And they'd say "Well maybe the 11th will do the trick?"
No, it can't be that disturbing. Reality can't be this complex! But it is. It really is. I recently read Cure Unknown by Pamela Weintraub, and I finally fully understood the entire picture. Sure I had 90% of it already, but there were a lot of holes that didn't quite click it all into place.
Life is traumatic, like Dr. H says in NY. All of us are the walking wounded, whether we have Lyme Disease or not. We all have a need to constantly free ourselves from the bondage that we find ourselves in with our issues misdealt with, and the feelings that permeate our daily lives. Lyme disease just forced us into the depths of hell, forcing us to really decide, who we really choose to be in relationship to this nightmare. Who are we going to be now?
We have to just keep trying to trudge through the messy feelings if our goal is to stay afloat. Keep pumping out the water, as we slowly drown.
I am not a counselor, and I'm "in" it, like all of you, as you can tell by my story so far. So I'm in no position really help anyone. All I can do is share my own experience, strength and hope, and just tell you that I know......I know.
[ 08. August 2008, 11:38 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote: No, it can't be that disturbing. Reality can't be this complex! But it is. It really is. I recently read Cure Unknown by Pamela Weintraub, and I finally fully understood the entire picture. Sure I had 90% of it already, but there were a lot of holes that didn't quite click it all into place.
AMEN AND DITTO!!!
Hang in there Mike! You are on the right path!
!A path with heart is surely the right way!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I hope you didn't think I was being flippant.
My purpose in posting was to say there is a PROCESS. There is no timetable on the PROCESS.
There is no guarantee that others who hurt you will respond the way you want just because you are ready to deal with issues..
Life isn't a neat package. Like I said, my daughter did therapy for two years. However, she didn't have a lot of baggage. She had to find a way to process hurt differently. But, it started with releasing those who hurt her.
I started processing 20 years ago, and still work through things. But, at least I have the tools.
If you don't work with the whole body, you are still toxic. Toxic emotions slow down the healing process.
Posts: 2903 | From AZ | Registered: Feb 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:I hope you didn't think I was being flippant.
Me? I didn't think so. It seemed like any other post.
quote: My purpose in posting was to say there is a PROCESS. There is no timetable on the PROCESS.
There is no guarantee that others who hurt you will respond the way you want just because you are ready to deal with issues..
Absolutely the truth.
quote: Life isn't a neat package. Like I said, my daughter did therapy for two years. However, she didn't have a lot of baggage. She had to find a way to process hurt differently. But, it started with releasing those who hurt her.
I wish life was a neat little package, then I could put little yellow tags on everyone. *lol* -- like Matchbox 20. I wish the real world, would just stop hassling me!
quote: I started processing 20 years ago, and still work through things. But, at least I have the tools.
If you don't work with the whole body, you are still toxic. Toxic emotions slow down the healing process.
It's the truth.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
"One by one, we took each "hook" and put it in the fire. We didn't feel like we forgave, at first. But, with the act of letting go, we took away the power we gave those who hurt her."
So true.
You are a really good mom.
Blessings to you, Peedie
Posts: 641 | From So. CA | Registered: May 2008
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Angelica
Unregistered
posted
I so agree with Peedie. You are a great writer and your experiences do help other people. Your words are a gift.
I think your father has not recovered yet either from his earlier addiction. Sure he does not drink but he still is not dealing all the way. I am sorry about the pain he causes you. My father sounds a lot like yours. Mine did not really have a drinking problem but he had other addictions that got in his way of being present and being a good parent.
Has anyone heard from tailz today? I hope she is feeling better today about everything that she is going through.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Hey Peedie, I don't know what's stopping me. Writing has been on the table for years. It's one of the skills that developed out of the nightmare, as a consequence of person after person telling me I was wrong, that I didn't know what I was talking about, that cute hypothesis weren't facts, and that until I had facts, I needed to listen to them and follow their directions.
I began writing, and referencing everything. If I made a statement of fact, I referenced credible sources, reflecting my reasons.
Each month, I walk into probably 3 -5 doctors offices that I see, and each month they each receive a one page summary. The moment I walk in they say "So what's going on, how are you?"
I hand them the paper immediately and say "Read it." -- Originally they would say "Ok, I'll read it later."
And I would say "Oh no you won't, I want you to read it now before we begin."
Today, they do it automatically. They know I won't talk to them unless they do.
All of this developed because of Lyme Disease and co-infections -- as well as trauma from the past. Lyme affected most of my temporal and frontal -- pre-frontal lobe, but for some reason, my language centers were less affected. My memory, ability to find words, and to encode information (Learning) were severely riddled with deficits, but... I could convey points. My IQ was sufficiently low compared to my peers, which seemed so odd given I had exceptional skill in other areas. What could it be? Lyme Disease!
With Lyme, we feel vulnerable speaking, we forget things, we leave things out, we have trouble putting things into words -- and somehow, we all often think "Well the doctor will get it, he see's hundreds or thousands of cases like mine, he'll know what I mean."
The lesson I learned was "No, he absolutely won't know what I mean." Most of the time, the doctors were quick to make assumptions or ride a train of thought off one piece of information I gave them, and they would derail the entire point of what I was saying without seeing the context of the data, or the whole picture.
By staying focused with my writing -- which was just a compensatory skill built out of necessity, they were forced to see all the points organized, one by one, and then referenced carefully.
I went to the doctor recently to get testing through Igenex, Fry Labs, and Labcorp. My doctor didn't even know any of them, even Labcorp. Knowing in advance that I should leave "nothing to chance" -- I investigated each lab, and provided credentials, for the states they practiced in, whether insurance or medicare accepted them, and what the science of their work had to say. I would condense it, and put it all into a neat little single page.
They couldn't say no. When they did, I told them they didn't know what they were talking about, and I made sure they knew it. The tables had turned. I became a skilled debater, as long as I could reference my argument.
I don't like to argue, but I'll debate someone into the ground, and I'll crush no only their point of view, but their ego as well -- if they force me to, and I'll do it all with a stroke of a pen, or the words from my mouth. I only do this when I have to, such as with doctors, or in situations where I'm threatened financially, or otherwise.
In the end though, after all of this, I still can't bring myself to write a book. I feel it's all been said or done, that someone before me has already completed the task. If a story worth telling crosses my path -- and no, my biography is not worth telling, since everyone and their mother has written one -- then I'll make an attempt. I'm not going in search for it, and I'm not ready at this moment for it, but it'll come to me. Right now I'm focused on my recovery.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I don't believe in forgiving people who do not apologize for wrongs they have done, and show no sign that they will change their behavior.
Have you read Carl Sagan's tit-for-tat paper (can google this). Basically it lays out several possible rules for human behavior:
TABLE OF PROPOSED RULES TO LIVE BY
The Golden Rule Do unto others as you would have them do unto you.
The Silver Rule Do not do unto others what you would not have them do unto you.
The Brazen Rule Do unto others as they do unto you.
The Iron Rule Do unto others as you like, before they do it unto you.
The Tit-for-Tat Rule Cooperate with others first, then do unto them as they do unto you.
And here is a brief explanation:
"Carl has a wonderful theory that The Golden Rule is not the best creed to follow, at least from the viewpoint of actually encouraging good behavior in others. "Do unto others before the do unto you" is one popular variation, but that leads to a vicious circle of preemptive retribution (I just made that up). There is also "Do not do unto others what you would not have them do unto you", which is actually closer to what I hold to than any other rule, but it puts one at a disadvantage with it becomes necessary to dissuade certain behaviors. And finally, there is, "Suck up to those above you, and abuse those below", also called "The Weasel Rule", which is probably how most people do it.
Carl, however, used the scientific method to come up with a better creed, which he called "The Tit-for-Tat Rule". The basic idea here is that you "Cooperate with others first, then do unto them as they do unto you." The ran it through various tests, essentially cooperative games modeled on the venerable "Prisoner's Dilemma", where pay-offs vary based upon whether or not you and the other players betray each other. A player using the "Tit-for-Tat" rule would cooperate in the first round then, in every subsequent round, do exactly what their opponent did in the previous round. If their opponent betrayed them, they were betrayed in turn. If their opponent cooperated, then they received cooperation. What they found was very intriguing: Regardless of which gambit the opponent used, and how many times they changed it, a player who relentlessly adhered to the Tit-for-Tat Rule would always eventually win.
I'm very enamored with the simplicity of the rule. Make the first move. Do the right thing. But don't be a fool about it."
I think the golden rule can make patsies of good people and encourage bad behavior.
Posts: 8430 | From Not available | Registered: Oct 2000
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What a gift you have for helping others. You are an extraordinary person.
I am alarmed beyond belief to find that Tailz has been banned! Just when she needs us most.
She shared her anguish with us over the rejections she felt...and now she has been rejected here as well.
I am so scared for her. I started another thread because I think people need to know why she is not answering your wonderful, heartfelt posts.
Jeanne
Posts: 345 | From East Coast | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Angelica, I really think you're right about my father. He's such a good person today, but he's not totally healed. I think he feels a lot of guilt, and I think I remind him of what he did. He didn't just physically and spiritually abuse me. He did the worst you can do to a child, I won't say more than that.
He was sick, a very sick person, but it was still his responsibility. His actions, his karma, not mine. And I always remind myself of that. I try hard to be patient, and to be understanding -- but with the way he's treating me right now, I'm angry with him, and I'll tell him I am. If he doesn't respond respectfully, then I'm going to make my decision about how to proceed, and I may just detach from him and not talk with him for awhile.
I don't know exactly what will happen. There is someone else in my life that hurt me terribly recently. My roommate -- he's not living here right now though. That's part of the reason I'm financially in a bind. I'll manage to work it out, what he did was of the greatest insult, the highest betrayl, and incredible disturbing to me. He sexually assaulted someone I love very deeply, while I was asleep in the room down the hall. She begged him to let her go,.....begged.
I never would have dreamed that someone I was so close with, who was like a brother to me, could betray me, could try to rape someone I was in love with.
People will betray us, people are imperfect, they will fall short -- it's that simple. Now, dealing with this pain has been terrible. I wrote him a letter, once again weilding my words as a weapon, but I used them to help him heal, if he chose. I was respectful, I went above and beyond what I feel. I want nothing more than to bash his ****in' skull in and kill him, that's what I feel like doing, but I won't do that. I know, that what is really best for me, is to handle it with self-respect. That means not hurting myself by hurting him. That means "Forgive them, for then know not what they do." No one says I have to forgive him immediately though, and that's the key!
Can I let it go just because I want to? Of course not, I'm ****ed and hurt! I'm not going to force myself to forgive, I'm not going to take any of the responsibility. It's theirs to carry! They did something hurtful.
By my experience, sharing these things, we all can see the reality of living as people, not only with Lyme, but.....as it is. Sometimes you get dealt some bad cards, sometimes you attract bad people, sometimes -- you.... are responsible. Not this time though. I've done great, and I handled this great, but it's still messy and painful.
There is no advice to solve things like this, these are things I simply must feel, must talk about, must go through a process with -- and it will pass, but the scars will not heal quickly. When people so important, so bonded to us, do these things -- the wounds remain.
To help me get some of the pain out, I wrote a song. It's quite good really, I was suprised. And the entire song is only 4 chords on a guitar! This is painful to share, and it was painful to write, but I want to share it.
Obviously, it's called Betrayl:
G And here we are now
Cadd9/G Here is all wrong
Em7 Heaven or hell,
Cadd9/G It seems I can't tell anymore.
Verse: Like a brother to me You stood behind me Was it all a facade, Did you lie to get along? Were you just an enemy. Did it feel good to hurt me? Did you get your way Did it make things ok? Oh well, not anymore...
Chorus Betrayl it's in your eyes A hand between her thighs Could you hear or were you deaf Did you want what you couldn't get A kiss upon her lips Her wrist held in your grip If you had it your way Would you want this anyway?
Verse 2 All apologies You deceived with such ease Was it ever enough Did you lie to get loved Were you just an enemy. Did you truly believe That you'd get your way You wouldn't have it any other way No no no no, not anymore
Bridge:
Em, Cadd9,
Pre-chorus And here we are now Here is how I feel It doesn't seem real It's a wound that'll never heal
Chorus Betrayl it's in your eyes The tears roll from my eyes You trade trauma for truth Do you direct and edit too? A movie of pain You're an actor acclaimed If the nobel prize Was given for lies You'd be the only nominee We be blown away by your speech There would be no applause We sit in silence because
Outro: Betrayl it's in your eyes And here we are now Here we are now Betrayl it's in your eyes Here we are now Here we are now Betrayl it's in your eyes Here we are now You didn't get your way This is the way This is how I say Good.....bye.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Lou, I really like that, really really like that!
I passed it along.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
MB, I am floored. The guy was worse than beetle dung. Betrayers will always betray. No matter what they say.
One learns to let others prove themselves worthy of your openness and friendship. They need to earn it. In my books.
If they dont earn it, they are swiped off the table of my life. Period. No regrets. Forgiveness not necessary. They are just not fully functioning beings. I have no need for seriously defective people in my life. Compassion for their lack, yes. Nothing to forgive. The only thing hurt was our expectations of perfection. Anger is ok, too. But only as a lesson, not a way of life.
Betrayal is a part of life.
Prayers to you. Northstar
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Lou, that's essentially exactly what I do! Although I wouldn't say I intend to betray, but rather the person who did betray, often feels betrayed when they're challenged and forced to accept responsibility for what they did.
I highly respect Carl Sagan, the work he's done over the years was extremely valuable. It's unfortunate he's not with us anymore.
Let me tell you what I did with my roommate:
After I found out about what he did -- I wasn't told for a couple days -- when I found out, I began making phone calls to counselors (He has asked me to help him find one just a week earlier before the assault.)
I wrote a letter telling him what I thought about his actions, the pain he caused, and the consequence. My roomate was in Cape Cod during the time period that I was told about what he'd done.
Two weeks later, when he arrived at the local bus station, he called to have someone pick him up. He didn't know that I knew what he'd done yet.
I had a whole plan in place. I'd pick him up, I'd drive him somewhere prive and hand him the letter, and then I'd have another driver show up after having spoken to him. The second driver would wait until he'd removed his bags from my vehicle, and then he'd be brought to another location of his choosing, where he could stay.
I would then work out the circumstance with the person assaulted, letting them decide how they wanted to proceed, whether to file charges, to get counseling, to face the roommate directly, or to write him a letter. Whatever best suited her.
When I picked him up from the bus station he was ****ed off, but then became chipper and happy. I smiled, I laughed, and I wore a facade. I drove him to a restaurant, where we ate for an hour. All the while, inside, I wanted to stab him in the face with the knife beside his plate. I went into the bathroom and called the second driver, telling them when to come meet me.
After feeding my roommate (Like a last meal before walking the green mile), I took him to a quiet field, with a bright blue sky, greenery and trees and a shadow beneath. I told him "Let's toss the football around and hang out." He said "Sure" -- we walked down to the field, and I said "Sit down with me..." -- so he sat beside me, and I said "I have something I need you to read."
I pulled out the letter. In it, I told him I knew what he'd done, I explained it in detail as it was reported to me, what would happen, the consequences." - He just sat there quietly reading, he didn't stop, he didn't speak. Then, when he was done, he hung his head between his knees.
I then spoke. I told him "How could you betray me so easily? How could you hurt another human being like that? Whatever your reasons, the consequences are now here. I feel like killing you, and you're fortunate that I'm the one here giving you this letter, and not someone else, because you'd be killed, and your body dumped down the local river embankment. You're fortunate it's me. Now I'm sick, I have health problems, I have a lot of stress in my life, and what you've done has multiplied that ten fold, and so now I'm going to tell you how things are going to proceed. You're going to take your bags out of my vehicle and transfer them to another vehicle which will be arriving in a moment.
After explaining this to him I then said "I have said what I needed to say, and now is your opportunity to speak. Do you have anything to say?"
He said "I'm sorry in a meek mouse like voice." and I said "You said I'm sorry to the victim right after you sexually assaulted her, and after your apology, before she could escape, you sexually assaulted her again. So your apology is unnecessary and of no value. He apologized again, like a small child being scolded.
I then helped him pack his bags into the second vehicle, and he began making phone calls on his cell to find a place to live. As he went to get into the car, I grabbed him and hugged him, and as I did I whispered in his ear "You're a disappointment to me, I suggest you contact the counselor reference I've provided. I love you like a brother, but you have betrayed me, and so you have forced my hand, I must respond in kind."
So, it was not with intent to injure, but rather to make a conscious decision which would induce the consequence of his own betrayal.
The truth is, when you betray another, you betray yourself, when you hurt another, you hurt yourself.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Mike,
What a gift you have for helping others. You are an extraordinary person.
I guess we rarely see in ourselves what other people see.
quote: I am alarmed beyond belief to find that Tailz has been banned! Just when she needs us most.
That is very disappointing to hear. She must have violated the rules of the forum? Either way, perhaps someone can pass on this post to her. Just because she's no longer on the forum doesn't mean we can't still show support.
quote: She shared her anguish with us over the rejections she felt...and now she has been rejected here as well.
That is very unfortunate. Tails is most certainly one of our most volatile and angry members. Feeling victimized and having been victimized her feelings come out extremely forceful. I think her illness is directly causing a lot of the erratic problems, likely Bartonella (or BLO) and Lyme together. I know, because I was the same way many years ago. I came across as insane! There was so much pain and confusion, and I was just out of control.
quote: I am so scared for her. I started another thread because I think people need to know why she is not answering your wonderful, heartfelt posts.
Jeanne
Jeanne, thanks for letting us know. Whether she's here or not, we can all get something out of the message she left us with. How do we really survive all this? How do we cope with life?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I think a lot of people are tired of reading personal tirades in a forum where we are supposed to be discussing medicine. These kinds of debates need to be taken to the support forum where they will be on-topic.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I think a lot of people are tired of reading personal tirades in a forum where we are supposed to be discussing medicine. These kinds of debates need to be taken to the support forum where they will be on-topic.
Sounds like a good idea to me. If a moderator would like to move this, feel free.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I wanted to add another perspective just in case Tailz is reading this. I didn't see the original post that led to the banning, but I definitely oppose anyone being banned simply for having an impossibly hard time!
I've done tons of therapy -- believe me, tons -- but since I became homebound it is not so easy to do. I have done phone therapy, and seek out phone support whenever humanly possible, but it is simply not the same as being in a room with someone talking face to face. More and more, I also find therapy fairly useless with dealing with the parts of my situation that could be helped by functional changes, like someone suddenly showing up with all of the practical support, validation, and love that I need. I think it can be hard to hear over and over to talk to a counselor when one already feels traumatized and rejected, especially when one feels traumatized and rejected by counselors who just don't/can't get it.
The weirder and more isolated my situation has become, the more I feel invalidated by people saying they "get it," however well-meaning they may be.
From what I can tell from the summaries of Tailz' post, she is talking a lot about invalidation and straight-up trauma and abuse, which I know many of us have dealt with. However, I think sometimes one can cross a threshold when it comes to invalidation, and one just needs to be validated. Our experiences are incredibly individual, and not all of us benefit from the same techniques.
Essentially, they found that deficits in executive brain function can cause repetitive negative thoughts. I found this interesting since Lyme can wipe out executive function and in such a case talking about revising thoughts or positive thinking may be particularly unhelpful. I don't think it's always possible to change depression or trauma at all on the level of thought: we don't all necessarily have that kind of brain control at this point. And antidepressants may not target the executive function deficits. I'm just throwing this out there to say that, when something isn't working for someone (i.e. therapy, antidepressants) perhaps it just ISN'T working. Maybe there are other strategies, such as somatic therapies that bypass the brain, or Zen-centered approaches, or spaces to just vent about how hopeless it feels.
I'm just putting that out there to say that I can understand how frustrating and -- sometimes rejecting -- it feels to hear from people "talk to a counselor," especially if you already have, and especially if the situational issues are so complex that you really need more of a functional response. I definitely believe that Tailz and anyone else on this board should have space here to just vent about how hard it is.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Angelica
Unregistered
posted
Metallic Blue thank you for sharing so much of yourself here.
I am so sorry that your roommate turned out to be so ill. It sounds like they had some control and competitive issues they were dealing with in a very sick way.
I think forgiveness is sometimes not even about forgiving a person that has harmed us but just getting to the point where we eventually can let go for ourselves in a healthy way of the harm they have caused us or at least let go of a lot of the pain it seems like there is often some residue. It is the point where we no longer have to rent them any space in our heads anymore or at least not so often because we have some how dealt with what went on or a large chunk of it.
chamade honestly if you do not want to read personal posts here then don't. If you start to read a post and it is not to your liking then stop reading it. Part of healing and getting better is mental and emotional for lymies or anyone and if they post it under what you consider to be the wrong place then just try to deal with it. What you do not feel like reading and should ignore might just be helping the poster or some other readers recover.
I think people are feeling very fragile on this board lately and maybe instead of complaining we can make it a warmer kinder place.
Tailz as you know there are many of us here who support you and want to see you with a good LLMD so you will get healthier and happier and we are thinking about you and wishing you the very best.
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Angelica
Unregistered
posted
LymeCFIDSMCS I agree with you that seeing a therapist is not always the answer either. I saw some that really needed to see a therapist themselves rather than be treating people.
It does not make me want to go running back for more. I remember one who I was seeing when I had undiagnosed LD and was having horrid panic attacks and other bart like symptoms.
She kept telling me her problems and then when I went elsewhere she had the nerve to call me up and make a mean comment about why I was causing my own anxiety. She was such a mess she could not tell one client from another or remember the history they had given her.
I saw some psychiatrists too when I was still undiagnosed and was having some very bart like problems. Not only did they not diagnose my LD they were straight out of a out of control SNL skit.
I am sure there are some very good therapists and psychiatrists out there but some of them are badly in need of help before they should be treating others. The key I think is to find a good match and someone who is grounded and healthy mentally.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I've been trying to collect "Lyme friendly, or LLMD" psychiatrists and therapists on the list which I keep. I would never recommend a Lyme patient see an uneducated therapist on TBD.
If a patient wants to see a therapist with TBD, they should give them a copy of Under Our Skin, and a copy of the brochure from ILADS about the psychiatric aspect of Lyme Disease and tick-born co-infections.
A therapist may not be the best option if they're unwilling to understand this (the therapist or doctor), or -- as you've all said, they patient needs something entirely different.
If anyone has a Lyme Friendly therapist or psychiatrist, let me know. They don't have to use antibiotics, but if they accept the disease and try to help a patient sincerely, then I usually add them to my list.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
About forgiveness, I agree with Kelmo. For me, forgiveness takes place in the heart.
The purpose of forgiveness is not to absolve the perpetrator of their wrongdoing even though they show no remorse! It doesn't mean to forget that the traumas ever happened.
The purpose of forgiveness is to allow the wounded person to move forward with their life so they no longer feel like a victim, and no longer give their power away to the perpetrator(s). Over and over again, so they stay stuck in the trauma, feeling rewounded over and over again.
To truly forgive someone, be willing to acknowledge what you have learned (about yourself, the perpetrator, your vulnerability, the situation...), so that you are aware enough to prevent it from happening again from them or someone else. And eventually, some day, to find the blessing in the events.
It's pointless to extend forgiveness to someone who doesn't care, doesn't know they did anything wrong, or has no intention of changing their behavior or asking for forgiveness.
But, it is definitely possible to forgive in your heart so YOU can move forward and begin to reclaim the lost parts of your life and to leave that person in the dust.
Hope this helps, Nutmeg
Posts: 386 | From WA state | Registered: May 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Better said than I, Nutmeg!
Posts: 2903 | From AZ | Registered: Feb 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Excellent posts! If you want to contact Tailz, she reached out to me. PM me with your e-mail and any note you'd like to give. I'll pass them along.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I'm so sorry your father wasn't there for you. You have become a wonderful man. Your right, I think he see's his shame. Don't let it be your shame. He should be very proud of you! I am.
You were gracious to your ex roommate. It says more about you than him. His evil didn't change you. Good for you. I'm so very sorry that happened to you and your girlfriend.
Thank you for sharing your life with us. You have been through a lot, but you still shine!
Keep shining.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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I agree. We have to give up the right to retaliate. We do not have to restore relationship, that is our choice, and not recommendable unless they are truely sorry enough to acknowlege their wrongdoing and change It is then still our choice, relationships take trust and if someone has broken that, they may never get it again.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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