by Band Back Together | Apr 29, 2015 | Anger, Anxiety, Chronic Illness, Fear, How To Help A Friend With Chronic Illness, Lyme Disease, Pain And Pain Disorders, Stress, Trauma |
Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.
This is her frustration:
I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it’s not.
The reason I’m at the ER is two-fold. I want to make sure that I don’t have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn’t. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.
You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it’s late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?
I have Lyme, but my diagnosis is still suspect.
When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for blood work,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn’t convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).
So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I’ve been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn’t need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I’m back on Doxy and taking Nexium to combat the heartburn. The problem is I’m not getting better like I did before.
What’s next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don’t want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn’t work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs.
I am ready to be healthy. Six months with little improvement is just not acceptable to me.
by Band Back Together | Apr 24, 2015 | Bullying, How To Heal From Being Bullied, Suicide, Teen Bullying |
So it’s 1976, I’m 15 and reading Stephen King’s “Carrie” in a corner of the library. The library is a fairly safe place. She doesn’t spend much time here. That’s not a guarantee though. She has spread the word and sometimes names or spitballs or random crap comes at me from some kid I don’t even know, but who knows Her.
I’m near the end, and I’m right there with Carrie, crowned, loved, feeling beautiful, on top of the world, until that first glut of smelly blood hits her face. I’m there with her, except she has something I can’t find: her rage. A rage so big that with her mind–not moving a muscle, but with the power of her anger, she destroys an entire gymnasium full of people. And they deserve it. All of them. That’s what I’m thinking, sitting there in the library. For a moment, I’m seeing everyone, even the people I like, dead on the floor and me above them, raging, holding the power in my hands. For once. For once.
Like Sweeney Todd, when he sings “They all deserve to die …because in all of the whole human race, Mrs. Lovett, there are two kinds of men …the one staying put in his proper place, and the one with his foot in the other one’s face: look at me, Mrs. Lovett, look at you!” Like Lotte Lenya as Pirate Jenny, in that old 1930’s record my father plays: “Noon by the clock, and so still on the dock, you can hear a fog horn, miles away. In that silence up there, I say: kill them all. And they’re piling up the bodies and I say: hoopla! And the ship, the black freighter, disappears out to sea, and on it is me.”
That’s the fantasy, except in the library, for a moment, it’s not a fantasy, it’s the most sincere wish I can make.
Then She comes in to the library, God knows why, she never studies in here. And I’m the first thing She sees. I freeze. Now it’s just a question of how bad it’ll be today.
I’m not Carrie. I’m not a vengeful Sweeney Todd, or Pirate Jenny sailing away. I’m fat, with long hair that is always greasy because the water pressure in our house sucks. I’m wearing my “Shakespeare is the One” sweatshirt and it smells because I wear it so much.
She zeroes in on me, of course. She and her gang all pretend to be getting books, but what they’re doing is stalking me, surrounding me, like jackals. “Hi Gerber Baby,” She says, “watcha reading?” in that fake sweet voice. “You reading Shakespeare? Huh?” I won’t look up. I won’t look at her. The book is ripped from my hand. “Fucking look at me, bitch. Don’t fucking ignore me, Gerber-head.”
She looks at the cover, and grins. “‘Carrie!’ That’s a great book. I bet you like her, Gerber. Know why?” She gets in my space and pokes me with her sharpened pencil on every word. “Because. You. Are. A. Pig. Just like Carrie.”
So it goes. Every day, so it goes. As far as I know, that’s how it will always be. Little by little, I will be destroyed. Today it’s mild, poking and prodding in the library. Tomorrow it will be science lab chemicals thrown on my skin. My books will be on the floor more often than on a desk. I will be chased down stairwells, trapped in bathroom stalls, and punched. There will be no part of my body or face or personality unmocked. Spitballs will be stuck in my hair. I will eat more, to try and drown it out, but I can’t. School is inescapable, and it’s the same people, year in, year out.
I have tried to tell Authorities. A guidance counselor carefully explains what a terrible background She comes from. I am told that life is no bowl of cherries for anyone in this world.
My teachers look away, turn on a movie, disappear from the hallways into break rooms as soon as they see Her starting in on someone (usually me). I have a vague impression that the teachers are scared of her too.
Home is my safe haven. I would rather die than tell my parents that their smart, pretty, talented only child is, in reality, a Big Fat Loser being tortured every day by the school nutcase. The fact that She is African-American would just make it worse. My folks were Civil Rights activists and I was raised on stories of racial oppression. They’d probably tell me how hard it is for Her, one of maybe five African-American kids in the school. And I’d agree.
No. Home must stay safe. I will not let Her have my home.
Sunday night, and I’m cold inside because I have to go back to school the next day. After dinner, we’re watching Masterpiece Theatre. “Upstairs, Downstairs.” I adore that show. I wish I could be an Edwardian servant. It looks better than Warren Junior High School.
The phone rings. My mother answers it, annoyed. “It’s for you, honey.” I go to the phone, annoyed. “Hello?” “Hi Gerber-baby,” She says sweetly. “Watcha doin? I bet you’re writing a paper. About pigs. I hope you’ll read it out loud to me tomorrow. You better fuckin do it.” Horrified, I drop the phone, then slam it on the receiver.
I go back to the living room. “Sweetie, are you OK?” says my Mom, “You’re very white.”
“I’m fine. I’m going to bed.”
I lie in bed. There are a lot of ways to die. I fall asleep wondering how many aspirin would do it, or if I could step in front of a subway train. Maybe that wouldn’t hurt. Maybe it would happen so fast that you wouldn’t know it.
“And the ship, the black freighter, disappears out to sea …and on it is me.”
ADDENDUM
It is 35 years later. I’m successful. I make my living as an actress and writer. I have lots of love and friends in my life, and everything I need materially, but I never married, or had children. I’ve always kept people slightly at a distance. I prefer to perform for them, I prefer to control what they see. I have fought with food, alcohol, and depression. Sometimes I win. What I just wrote, I’ve never said in full to anyone. And you know, all the school shootings now: every time, I think, there but for the grace of God go I.
by Band Back Together | Apr 23, 2015 | Coping With Divorce, Divorce, Loss, Major Depressive Disorder |
Just a few thoughts on age. I still get together with my friends, some of whom I knew in high school. We’re all thirtysomething (yeah like that TV show when I was a kid), but I could almost swear, at the core, we’re all still those kids. Surely, life experience causes us to collect memories, which good or bad, filter the way we interact with the world. And certainly, we all bear the marks of physical aging, whether it be gray hair, losing hair, wrinkles, or yes, even dental work. But still, these sparks we carry remain the same. Even the same as when we were little children. Way deep down for some, to be sure.
I feel like an old man when I look at my thirteen, eleven, and eight year old children. Wow! Were any of us really that energetic and bendy? It’s when I watch them play and run that I really feel what the years of labor have done to my back and knees. They fall down and bounce back up, just as if they had springy legs of some kind. They laugh the whole time, slipping and sliding in the dirt, grass or snow. Most of us would be in traction from an afternoon of tossing ourselves on the ground, victims of a horrible zombie attack.
Age is a funny thing. I used to think that my problems with self-esteem and depression would somehow evaporate with age alone. But, like physical injuries, psychological ones leave their scars. Scars that sometimes become quite raw from the newer and different events of adulthood. I remember thinking about those scars when my wife left me. I was more hurt than you could imagine. She was sick and tired of me and my depression. I’d withdrawn from nearly everyone in my life, unhealthily leaning on my woman as my only friend. It was a burden to her, I know. I still harbor some resentment from her leaving me. In some ways, that is rooted in the thought that I was left on a sickbed. But, damnit, I wouldn’t open up to anyone in those days. The things that bothered me didn’t fall away as I aged. Indeed, they seemed to have grown in strength from the darkness that I kept them in. As I have really thought about the whole thing, I realize that my many secret pains and worries destroyed my attitude and therefore my marriage. My ex knew that I struggled with depression and low self esteem. But my stubborn refusal to let my demons out into the light just made those things worse. In the end, thought, the pain really caused me to begin the healing of wounds that I’ve carried nearly my whole life.
One thing that I can say about aging is that to me, truly becoming old means letting the shit the world dishes out smother your spark. I am pagan and I think that the best way to honor the gods and our ancestors is to be grateful for the chance to live, to be hopeful about the future, no matter how dark the past and to count the many blessings we no doubt have accumulated over our lives.
I think that there are times of life that prompt very real and intense introspection in humankind. Times of loss are a perfect example. Over a long enough timeline, we all lose at least one thing that is very dear to us. At such a time, it’s easy to become stuck in a ‘woe-is-me’ attitude. Flipping that over, we see that such a time is great for taking stock of what we still have: not money or status, but the truly unique gifts within – music, art, compassion, humor, kindness. All of these and more are gifts that each of us have in some measure. Pain is often a very instructive teacher.
What I hoped time would heal was only first poulticed when I lost the woman I loved. Surely it was a painfully hard knock, and there have been many dark days, but I think that the pain off loss has facilitated my healing where age and time could not.
by Band Back Together | Apr 22, 2015 | Bullying, Childhood Bullying, Coping With Bullying, Coping With Depression, How To Heal From Being Bullied, How To Help With Low Self-Esteem, Major Depressive Disorder, Self-Esteem, Teen Depression |
This is her story:
Hi, The Band. I’m a Chinese international student and I’m still trying hard to recover from being bullied in kindergarten.
Back then, I was a shy little girl who was mocked by my classmates; I can still hear their laughter. To make matters worse, my kindergarten teacher was irresponsible (she only cared for children whose parents bribed her). Once, classmates kicked my head in until I bled heavily. The teachers advice? She told me to lie to my family and say that I “fell down accidentally,” clearly my own fault.
The effects of bullying persist. I’ve suppressed my own wants and desires so that I can please others; my family, classmates, and teachers. I was a nice girl, I studied hard, didn’t waste my time on music, pop culture, relationships during my adolescent “rebellion.” I took every word of my family, friends, teachers, and classmates seriously, even when they’d ask me to do something I didn’t want to do. Everyone thumbed on me and nobody thought I was problematic – including me.
I began to notice problems when I was in college: I cannot keep diaries for myself (but I can write for school work). I cannot develop hobbies, enjoy music just for fun, or express myself on social media unless it relates to school work. I don’t have any idols. Anything of my own preferences feels obscure and unimportant. My self esteem is low, I never feel proud of myself.
It’s hard for me to say no to others. I don’t even know what it feels to like fight for myself. I’ve compromised myself many times no matter if I wanted to do it or not (and there are a lot of things I like and dislike). I treat everyone the same, no matter if he/she was cruel to me.
I feel especially uncomfortable when it comes to meeting some outstanding, strong or potential-to-be-bullying peers. All my current friends are somehow weaker than me. While I relate to most of my peers during school, I never contacted them after graduation.
I need to pretend to be exciting to my peers or siblings.
I’ve just recovered from two depressive episodes and begun the long process of healing, empowering, and understanding myself. I repeated “I love you” everyday to myself since last April.
It worked!
I can calmly write for myself. I can express myself on social media. I started to figure out my likes and dislikes. I began to asking my Chinese friends to help if I have concerns about my life. I stopped taking school so seriously so that I can best understand myself and the world. I’ve begun reaching out to help other people who feel weak, depressed, or bullied learn to love themselves. Invigorated, I’ve started to contribute to the development of my discipline in China. I’m comfortable and peaceful being alone doing nothing. While I stay alone here, I’m never lonely.
I have goals now, too! There are a couple of things on my bucket list (traveling, feeling a sense of belonging with my peers, learning to make friends with people who intimidate me) are things I really want but haven’t had acquired yet. I want to fight for myself (when necessary), go to parties and have fun, enjoy music, and attending online or offline community activities.
Life is certainly looking up.
by Band Back Together | Apr 21, 2015 | Addiction, Adult Children of Mentally Ill Parents, Adult Survivors of Childhood Sexual Abuse, Birth Injury, Brain Injury, Child Sexual Abuse, Healing From A Rape or Sexual Asault, Incest, Parentification, Prescription Drug Abuse, Rape/Sexual Assault, Schizophrenia |
Growing up, my family dynamic was so different from anyone I’ve ever known. My father was born a footling breach with the cord wrapped around his neck. He ended up with brain damage due to the lack of oxygen to his brain and was later diagnosed with schizophrenia. My mother is developmentally delayed and was also later diagnosed with schizophrenia.
My parents met through my mother’s brother, my Uncle Bob, who was also developmentally delayed. Uncle Bob and my dad went to special education school together and became friends. Bob introduced my dad to his little sister, my mom. They met, fell in love, got married and then I came along.
Neither one was really capable of living on their own, much less together, and now a baby, me. By six weeks old I was malnourished and dehydrated – I almost died. My maternal grandmother took me away from my parents and brought me to the doctor. From then on, she did her best to raise me. It wasn’t long before my parents divorced and my mom moved back home with us. My father moved back home to his parents, too.
We had grandmother, my mother, Uncle Bob, and my grandfather, the child-molester, all under one roof. My grandfather molested my mother and had a reputation for other little girls in the neighborhood. I believe he started molesting me when I was less than a year old. I don’t understand why nothing was done legally but my grandmother said they just overlooked him.
I believe that he had intercourse with me around age four. My mom and grandmother noticed that I had like a nervous breakdown and screamed when anyone came near me for over a week. They had to keep me in my baby bed and just bring me food like a animal! I believe with all my heart he raped me but no one took me to the hospital or doctor because he might have gone to jail for it. My grandmother had no education and relied on my grandfather to support her and the rest of the family. I’m not making any excuses; I think she just didn’t know what to do.
I had so many problems with my private areas when I was a little girl and nothing was done. I still don’t understand why. I even had to have surgery on my vagina when I was five – it’s like everyone was wearing blinders. Baffling. My grandfather died when I was seven, so the molestation ended
By ten, I realized I was already more advanced than my parents. I taught my dad his ABC’s using flashcards when I was eight. He never learned to read and neither did my Uncle Bob. My mother can read but has absolutely no common sense, so I swear my dad was more intelligent. At fourteen, I had to quit school to take care of my family. By then my grandmother’s health was failing, times were changing, and they didn’t understand how to make appointments, pay bills, stuff like that because things became automated.
I became very angry that I had no childhood so I rebelled – big time. I ran the streets and ended up getting raped. by a friend’s father. He actually plead guilty to it and severed a year and a half in prison. I still feel like that was my fault because I flirted with him.
That’s the only way I knew to act around a man.
My mom is a religious fanatic so I grew up in church and attended a private “Christian” school. My dad’s mother paid for it but not for the reasons that you might think. Embarrassingly, it was to keep me from going to school with black people – terrible.
The school was crazy too; I just couldn’t escape craziness! At one point we had a so-called Evangelist visit and for two weeks we were made to listen to what was supposed to be real exorcisms and learn all about demon possession. It was horrible! I am forty years old and I still have issues with it.
After I quit, I ran the streets, acting like I was 21. At 14, I met a 19 year old man and moved in with him. I was living like a married woman at age 14. My grandmother was actually happy that I had settled down; now she always knew where I was. Unfortunately he was very obsessed with me and abusive. At first, I enjoyed the attention and punishment; I put up with it for two years.
Ironically – and I know this will be hard to believe but I swear it’s true – BOTH of my parents had nervous breakdowns and were diagnosed with schizophrenia within the same year! My mom thought she was possessed by a demon and talked to God while my dad thought he could talk to the devil.
They were both in and out of different mental hospitals all the time. My mom would speak in tongues and run outside into the street, it would take six police officers and EMTs to restrain her. My dad would try to kill himself, he took 120 over-the-counter sleeping pills and was in the cardiac intensive care unit before going to the mental hospital.
At 17, I met my ex-husband and became pregnant with twins. I lost one of them during my pregnancy but delivered my now 22 year old daughter. He gave me my first black eye while I was pregnant with her. We had three more children together, three sons. My oldest son was diagnosed with Asperger’s Syndrome and my middle son has autism.
Dealing with all my family issues with my sons delays was more than I could handle. On top of everything, my ex-husband was abusive. Along with several “minor beatings,” at one point I had a fractured elbow and a nose broken so severely, he split my nose almost in half.
In 2006, my Uncle Bob, who had been like a father to me was killed in a accident. It was more than I could take. I started abusing pain pills – big time. Two years later, my grandmother passed away and added drinking to the mix. A lot of drinking.
I left my ex-husband and met a girl I fell in love with; we were both idiots and addicts at first. Man, do I have stories! Four years into our relationship, I lost my kids. I gave up on life. Around the same time, my girlfriend and I briefly separated. When we were separated, she slept with her ex boyfriend, got pregnant, then we got back together.
I’d like to say we sobered up right away but that would be a lie. The baby was almost two before my girlfriend got help. Eventually I followed. Today, I split my time between my ex-husband’s house and my children. She lives with her boyfriend and her daughter. We are very close. Turns out, I really like my ex-husband now that we’re not married and he’s not abusing me.
I just wish I had someone to talk to that can relate to even half of my crazy upbringing. Someone who can relate to me. I don’t know anyone with both parents like mine or a life like mine. It’s a crazy life, but that’s all I know.
Thank you for listening, The Band.
