This petition disturbed many bloggers. Alarming the community to learn the practice of Female Genital Mutilation (FMG) was happening in America. I find the savage practice disturbing for any female in any country. Please sign if you haven’t already and send to everyone you know. Thank you. M
First Victory
Over the past few months, more than 220,000 of you have signed this petition, urging the American government to end the practice of female genital mutilation (FGM) in the United States, and commission a prevalence report on FGM’s impact on women and girls.
It’s not unusual for me to get jacked up reading the news or having a few choice words on the subject. Blowing a F@#&* gasket with my stomach rolling in disgust is unusual. It’s unacceptable no one was held accountable in this horrific crime. Two men responsible for Psychiatric prisoners killed man by locking him in the shower for two hours. The water temperature was 180 degrees. How does someone decide to torture a Mentally Ill man to death? Two people ignored his screams of pain, ignored as he begged for his life. After he was dead another prisoner had to clean the shower. The details to graphic for me to write. The inmate cleaning the shower will have horrific images to scar him for life. Their actions are deplorable. I can’t stop thinking of the family’s grief and anger. I hope you’re mad as hell, disgusted and ready to hold the prison and two workers accountable for their actions. Please sign the petition asking for justice and pass to everyone you know. We can’t accept abuse on any level Mentally Ill or not. If we do nothing, we lose civility. Thank you. M
Petitioning Attorney General Eric Holder Investigate the 2012 death of Mr. Darren Rainey, a mentally ill Florida prisoner who died after prison guards locked him into a 180-degree shower.
On June 23, 2012 Darren Rainey, a 50-year-old mentally ill state prison inmate in Miami-Dade County, died after guards responded to his defecating in his cell by locking him into a 180-degree shower for two hours—at which point his skin was separating from his body. Local police, and the state, failed to properly investigate. The case was only brought to light in recent months by The Miami Herald. After two years, no one has been held criminally accountable, or even charged.
Darren was serving a two-year sentence for drug possession and housed in a psychiatric unit. After his death, guards forced another prisoner, Mark Joiner, to clean up the shower where Darren died, including chunks of skin.
“He was crying, please stop, please stop, Joiner said. And they just said “Enjoy your shower, and left.”
Only the U.S. Department of Justice can properly investigate this terrible crime, and a broader culture of abuse in Florida’s prisons that has led to other unnecessary deaths, and which falls especially hard on the mentally ill.
I only post petitions from Change.org that really disturb me. I feel strongly you want to see the injustice and take part in forging change. There are so many in my e-mail I can’t do individual post for each. I’m asking you to click on the links below or go directly to http://www.change.org to check currents petitions. Sign up for direct notices if you like. There are many opportunities to make your voice heard. One signature can make a difference. I will post an update on petitions which have seen victory and positive change. We have to make our collective voice heard, violence is not acceptable and people will be accountable for their actions with proper penalties. M
I thought last week was an all time high, wrong. This week will blow your mind. Ok, maybe not but it sounds so good. Many of you know I love Fleetwood Mac. I also have a deep passion for Queen. Freddie Mercury was a true entertainer. He had self-confidence, down right cockiness, an original. He liked men but loved women, he was overtly sexual in his gestures yet nothing distracted from his power house voice. This song has significant meaning in my life. While in boarding school this became our anthem. It felt like giving the bird to our abusers, saying I will come thru. The words gave me a confidence not felt before. There is a line ” I’ve done my sentence but committed no crime”, as a teenager abused by both parents, that’s how I felt. I wasn’t a bad kid, I was an out of control drug addict that would not be contained. I never felt like abuse was my fault. The evil thoughts I felt about my parents, confusing. Spending a year at Mt. Saint Michael’s broke this horse with the lightest touch. The nuns and staff gave me all the love and attention my parents never did. The discipline and responsibility saved me, saved me from myself.
I had to include the interview with Stevie, she’s so young, beautiful and so excited. The interview took place in my hometown, I had never seen it before. A total gem. The Fleetwood Mac song, goes back to the timeframe Lindsey Buckingham and Stevie Nicks joined Fleetwood Mac. The sound and video quality is not the best yet I felt energized by the song. Without further ado, kick back in the Lazy Boy, put your feet up and close your eyes. You are entering the Rock and Roll zone. :) M
I thought last week was an all time high, wrong. This week will blow your mind. Ok, maybe not but it sounds so good. Many of you know I love Fleetwood Mac. I also have a deep passion for Queen. Freddie Mercury was a true entertainer. He had self-confidence, down right cockiness, an original. He liked men but loved women, he was overtly sexual in his gestures yet nothing distracted from his power house voice. This song has significant meaning in my life. While in boarding school this became our anthem. It felt like giving the bird to our abusers, saying I will come thru. The words gave me a confidence not felt before. There is a line ” I’ve done my sentence but committed no crime”, as a teenager abused by both parents, that’s how I felt. I wasn’t a bad kid, I was an out of control drug addict that would not be contained. I never felt like abuse was my fault. The evil thoughts I felt about my parents, confusing. Spending a year at Mt. Saint Michael’s broke this horse with the lightest touch. The nuns and staff gave me all the love and attention my parents never did. The discipline and responsibility saved me, saved me from myself.
I had to include the interview with Stevie, she’s so young, beautiful and so excited. The interview took place in my hometown, I had never seen it before. A total gem. The Fleetwood Mac song, goes back to the timeframe Lindsey Buckingham and Stevie Nicks joined Fleetwood Mac. The sound and video quality is not the best yet I felt energized by the song. Without further ado, kick back in the Lazy Boy, put your feet up and close your eyes. You are entering the Rock and Roll zone. :) M
Church of the Spilled Blood St. Petersburg, Russia
I’ve been sick and not able to post the Lyme Journal today. My thoughts are with you. I wanted to share one of my best photos from Russia. I would love to hear what you think. Have a great day. :)
Triple Shot Thursday, who can turn the volume down on Neil Young or Janice Joplin. The first Neil Young gives you a glimpse at his sense of humor. Who knew? The video is priceless, today you won’t see an artist not prepared for a set. It cost money. The exchange with the audience is real and the foundation of good music. The second Neil Young and Janis Joplin videos have special meaning to me. While in bad girl boarding school I met people from every economic group and fours corners of America. One thing we all had in common is we were damaged, for different reasons yet all suffering. Music became the glue, we had music in common. Needle and Damage Done effected me deeply. Not for the reason he sings about, I was a drug addict without using needles. My mind focused on Damaged Done. At 13 years old I felt my life was damaged beyond repair, it’s amazing what a year in a positive environment can do. Mercedes Benz by Janis brings memories of hard work wrapped around fun. The boarding school had a fully functional laundry, it was a way for the Convent to make money. They did laundry for The Greenhouse Spa. When you graduated from kitchen duty you moved to laundry. In the middle of one room was a mangler machine. You feed the sheets in properly and they came out the other side ready to fold. The pace of the machine keeps you busy. All newbies started at the mangler. It was hot, back breaking work, there was no stopping the machine. Each station had a certain amount of items to fold or iron or whatever. I had the choice station of hand ironing the delicate lace. All the older timers with plush stations ended before others yet could not leave. We would sit on a folding table singing this song non stop. It drove the Nuns crazy. We would sing at the top of our voices and totally goof off. At 51 it’s an unexpected gem, fun memories during a low point in life. Its time to kick back, let the music take you in and relax. You Deserve It! M
This week fatigue had a hold on me. A task requiring little effort takes twice as long. The extra effort is difficult for my multi tasking mind. Waiting on test results added to the stress. The doctor is making me wait until Sept. 19th to discuss the results. He gave me a nugget yesterday. I have Lyme, the co-infection Epstein Barr Virus and low Folic Acid. Requiring 2 new RX’s, for a total of 39 pills per day and 3 shots per week. The doctor surprised me with the Folic Acid RX, the red blood cell count was low. My grandmother could put all meds and supplements in one hand, throw them in mouth and swallow at one time. I am the opposite, one pill at a time shoved to back of throat, taking meds is a task. I’m not my best while being in limbo. I can hear gramps telling me, if you learn to enjoy reading , it will teach you patience. Mostly true.
If you have Lyme Disease a great book is The Lyme Disease Solution. My doctor uses as a reference guide. It’s spells out the two schools of thought on Lyme treatment. What a Lyme Literate doctor means and why it’s important to seek this type of doctor. The life cycle of Lyme and why it’s difficult to diagnosis. The different paths doctors may take to heal you, this is very detailed down to the names of meds used. I like the pros and cons of each treatment, it allows you to work with doctor on which is best for you. Some doctors go far beyond a Gluten Free diet, which is outlined. Hopefully my doctor won’t fall into extreme category. There are recipes in the book, they sound great if you cook. I have lived on the same bars, granola snacks, yogurt and cereal. I like Suja drinks, cold pressed, no preservatives, no sugar, all fruit including berries with high levels of antioxidants. Taste great, is expense. My husband eats some Gluten Free snacks, in general we eat separate meals unless I feel like eating meat or eggs. I have not found it difficult to transitions, down the road may be a different story.
This week I’m focusing on the effects of Lyme Disease. Outlined below is not a pity party. I think if people see what everyday is like it will stick with them. If one person uses DEET and doesn’t get Lyme, I will dance to the music. Don’t forget to check pets including cats or any other outside/inside pets. This in the prime time of year for ticks.
The information on Epstein Barr Virus was taken from CDC site. After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with compromised immune systems are more likely to develop symptoms if EBV reactivates.
*The bedtime set by the doctor is 9:00 PM, I have not made the bedtime yet. I think 11:00 PM is the earliest.
*My husband has to be home for me to take a shower. That crazy shower chair has caused me to fall twice. It’s worse when I close my eyes, get disoriented.
*One of the probiotics is liquid form to mix in drink. I can’t recall a med ever smelling so rank. I can’t breath when taking a sip.
*I take 3-4 pain pills a day, one taken at night to help me sleep. As a sleeping aid it’s awesome, the brain fog when I wake up is not. It takes a good thirty minutes to join the world.
*The fatigue and I have a difficult relationship. I can’t vacuum my office or much else. I feel tremendous guilt for not contributing to the household work.
*The edema hung around this week, up to my shins. The skin gets so tight it hurts, bumping into something is painful.
*Neuropathy in my hands along with Lyme Arthritis makes my hands very sensitive. My fingernail or pen can barely brush a finger and it feels like a razor blade. Both have little strength, causing me to ask for help. :(
*I can’t tell you the last time I cooked or washed dishes, can’t stand that long. My husband has to do both.
*When I have a good weekend , I work on laundry instead of resting. Rest is hard, I feel totally lazy. :(
*The guilt and other emotions can strain a marriage. :(
*The unrelenting headaches can render you useless. All you can do is lay down, pray for sleep.
*I have ulcers in my mouth and nose, a side effect of one med. FUN!
*The amount of hair loss daily is depressing. Good thing I wear a ball cap most of time.
*Due to the level of inflammation in my body, infections pop up, this week it’s a bladder infection. So much fun!
*I stay positive even though I’m starting year five of being sick. A year spent on diagnosing Lyme. The remainder on heart issues. A lot of guilt builds up, it’s hard not to beat yourself up.
*In staying positive I think some new clothes are needed because I’m going to leave the house. It’s depressing to see the number of shirts with tags on them. In the big scheme I know I’m blessed.
*I have cut my hair for the past 8 months, good thing I watched my hair dresser. My hair is natural color with the grays out front. Why spend $125 on coloring and haircut when I don’t leave the house. Great use for ball cap.
*Reading lab results makes me crazy. I research every line, what does this mean, what is it connected to. I have worked hard not to play doctor this time. The time on internet is unproductive.
*A DNA test was performed. I didn’t know and a bit unsettling. I have gene mutations for two illnesses. I didn’t know what the gene mutations meant in detailed medical terms. WOW! Just seeing the number of doctors involved in verifying the result makes you blink. I did spend many hours learning about the mutations. I have to wait until appointment to see how the results impact Lyme or general health.
I haven’t gone off the deep edge or forgotten what day it is. This song is the most beautiful rock song about finding God. This is dedicated to my friend/followers. Thank you for the kind words of support, prayers and overall positive thoughts. It would not be right if I didn’t mention EC is the master guitar rocker. The Rock Star in my head plays like my guitar idol. Have a great weekend. :) M
This week had its share of challenges. I completely rebelled, Lyme won the arm wrestle. Caution: For those who did not read last week. Lyme is prevalent in America, Canada, Germany and many other countries are seeing an increase. Lyme Disease can take one to three years out of your life. I know many of you don’t care to use DEET, neither do I. DEET is the only product protecting you from ticks. Any area where there are trees, tall grass or any other shrubbery is where ticks hang out other than pets. You can think it’s perfectly safe, your pets can bring them right to you. Use a spray DEET or sunscreen with DEET. If out enjoying mother nature dress accordingly, tall socks, long pants and long sleeve shirts. If the temperatures are smoldering, cover yourself in DEET spray or sunscreen.
* I’m sick of taking supplements. I haven’t taken them all week. The numbers of Rx meds taken daily is enough without extra supplement pills.
* The neuropathy was worse this week. My legs experienced more needle stabs. Hands, legs and feet went numb if sitting for more than a few minutes.
* Lab took 24 vials of blood Saturday.
* I was scheduled Wednesday for a day of testing, to ill to keep appointment.
* Experienced a strange eye issue. The peripheral vision was cloudy, the cloud created a small hole allowing me to see looking forward.
* The nausea is an ongoing issue, carrying a bag of cereal is my defense.
* I was very tired this week, which brings on more symptoms. I was very cranky. :(
* The edema is back in my feet up to the shin. The skin is tight and red. The pain is magnified when I hit my feet on something.
* Seizures are happening during the day, not bad as nighttime seizures.
* I broke out in hives for a day due to stress.
* Massive headaches come and go daily. A step under Migraines.
I’m looking forward with a positive attitude knowing the doctors orders are the way to healthiness. I will fake it until I make it. Thank you for the outpouring of love and support last week. Every comment lifts my spirit. Have a Blessed weekend.
This weeks selection is awesome. Robert Palmer in 1978, long before Shania Twain in mens shirts is awesome. I particularly like the song, the words never escape me. I love Steve Winwood, old or new all of his work is seared in my brain. Take a break, kick back and think back to where you were listening the songs. I hope you are enjoying the music. Do you have a request for the DJ, leave it in the comments. Warrior
This weeks selection is awesome. Robert Palmer in 1978, long before Shania Twain in mens shirts is awesome. I particularly like the song, the words never escape me. I love Steve Winwood, old or new all of his work is seared in my brain. Take a break, kick back and think back to where you were listening the songs. I hope you are enjoying the music. Do you have a request for the DJ, leave it in the comments. Warrior
We are in the home stretch for Cigna’s approval for Nikki’s Cochlear Implant. Please pass post to everyone you know and if you didn’t sign first time please do. President Obama made a promise, all petitions with over 100K signatures would get attention. She received almost 170K first time around. Let’s get Cigna’s attention. We can deal with Obama later. Warrior
We are in the home stretch for Cigna’s approval for Nikki’s Cochlear Implant. Please pass post to everyone you know and if you didn’t sign first time please do. President Obama made a promise, all petitions with over 100K signatures would get attention. She received almost 170K first time around. Let’s get Cigna’s attention. We can deal with Obama later. Warrior
Why aren’t parents with guns using gun locks, keeping guns in a safe, childproofing, and not going to jail when their child shoots and kills someone? I believe everyone has the right to own a gun and use it for self-defense. What I can’t get my head around, is why are children/teens gaining access to guns. There are headlines weekly about children/teens gaining access to parents’ guns. This is fixable and impacts all children/teens. Why does another child have to die for the ignorant behavior of a parent? The article is from a British Newspaper, Pierce Morgan tweeted the article to his followers with less than kind words about America. It’s sad, I had to agree with him. The killing of a child with your gun is no different from you pulling the trigger. Parents need a life sentence for killing the child.
Alygeorges surprised me with a nomination for the Very Inspiring Blogger Award. I’m honored she finds my blog worthy of the respected award. Alygeorges has a very uplifting site focused on Christian scripture. With a focus on how to apply the scripture to our lives. I can always find a great reminder of what God gives us in her post. She shares without preaching. She’s a long time friend/follower to lookingforthelight.me I will answer the questions and complete nominees at another time.Due to my health, I’m not able to list the worthy blogs to nominate for the award.There are many great blogs,what a problem to have. I have a big smile on my face. The Very Inspiring Blogger Award
Seven Things about myself:
I can’t have to many watches, this is a twenty year passion. I only have two expensive watches, one being my first splurge a Tag Hauer.
I think I’m a tech guru, on the MAC that is so from the truth.
I won’t drink milk out of date.
Before Lyme, I was a fanatic about a clean desk.
I usually have four or five books I’m reading at same time.
I listen the same three artist every night, James Blount, John Mayer and Josh Groban.
I love Black & White photography.
I’ll have to come back and finish up the requirements and nominations. Be patient with me, it may take a long time. Thank you Alygeorges for wonderful surprise.
I have learned several lessons since the last journal entry. A word of caution. For those who enjoy the outdoors anywhere in the US, Canada, Germany and parts of England, please educate yourself on Lyme Disease. If detected early doctors can usually treat with a short round of antibiotics. It is hard to think a tick the size of a period used in a sentence could do so much damage. I can’t imagine looking for a tick that size or a larger one the size of rice. The classic symptom doctors look for is called a Bulls Eye Rash. Up to 50% don’t get the rash, slipping thru during the early phase. The CDC acknowledges there are flaws with in Lyme Test. DEET and proper clothing are your only defenses against ticks. Other critters like mosquitos and fly’s carry the Lyme Virus. Protect yourself by using a spray or a sunscreen containing DEET. Read about extra precautions you can take. Here are resources recommended by my doctor,lymenet.org, lyme.org, lymediseaseassociation.org (Great site for locating a Lyme Literate doctor)
* The doctor was right, when giving yourself a shot you have to go with gusto. I made the mistake of going slow, I had a little blood, a slight pain at the entry spot and medication stained my shirt. You don’t have to stab yourself hard, pick your spot with enough stomach fat and when you aim keep going.
* Managing the number of probiotics, pills requiring an empty stomach, pills with food, working in my normal meds can cause a challenge. The key reason for the probiotics is to prepare your “gut” for the antibiotics. I’ve been told long-term use of high levels of antibiotics will take your stomach for a ride. I hate to throw up, it’s high on my list of things I dislike. I watched justinandchristavanderham.ca It took almost two years for Christa’s diagnosis, their entire ordeal took five years. Justin filmed the journey, it’s very powerful. It’s motivating to anyone battling Lyme. The video is an awesome education, if think you have or want to educate yourself. Christa threw up for nine solid days, more than once. That means my husband of 13 years will have to hold the bucket and see me throw up. I don’t look forward to that. I’m not including the jello thru the nose incident as throwing up.
* Enjoy the good days remembering overexertion and lack of sleep can make the symptoms worse. I was fooled last week, staying up till 1:00 or 2:00, one night 4:40 AM. The past three days are a reminder, the lack of sleep catches up. If you wake up late it throws your med schedule off the next day if you sleep in. I’m the queen of sleeping in, there is no discipline to force myself to set an alarm to get out of my comfy bed to take meds.
* You could have several doctors on your support team. I can’t drive while drugged and jerking, my husband has to take the day off to shuttle me to appointments. I’ve had appointments one day every week for the past month.
* When you’re enjoying the good days, you don’t think about what day the symptoms will return. Upon return this time my symptoms are like an early Parkinson’s’. I’m herky jerky making typing difficult. I have to realize at this point the diseases is in the front seat driving me. I have little control.
* As the virus invades my brain the neurological symptoms increase, last night I experienced 15-20 seizures before they let up. My memory is getting foggy. I picked a song for Throwback Thursday over the weekend. It’s Wednesday morning and I still can’t remember name of band. I see the signer on stage, some of the lyrics to songs yet the band name escapes me. It is hard to accept the disease is invading your body. I try to keep positive, looking at this as a growing experience. When you read my post or comments and I use the wrong word or make no sense at all please remember it’s the virus in me speaking.
* My doctor handed me a brochure for a Healing Center with a new state of the art HYPERARIC THERAPY. Maybe Michael Jackson can sleep in one, not me. The therapy is 1 1/2 hours long, laying in this weird chamber receiving 100% oxygen. I am claustrophobic, not to worst degree however put my in one of those and someone will not see the better side of me.
This morning 8/6/14 is the first time I cried, just lost it. I was reading the beautiful feedback from long-term friends/followers. I mentioned to my CTC Brother Willy last week, my fear of not being able to blog. I can’t express in words how much it means to be accepted for who I am. I’ve shared many of the worst experiences leaving myself raw and vulnerable. My heart overflows reading the comments expressing prayers and support.
Japan plans for celebration at Peace Statue, the celebration scheduled for 8/9/14. There are many messages in the festivities including, educate those who are to young to remember the Atomic Bomb dropping 8/9/1945 at 11:02. The celebration is to send a message of World Peace. I think World peace is desperately needed more now than any other time in history.
I was reminded today that I had Lyme and thought I would share with you the first post I wrote in 2014.
It’s been a long time since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. Maybe you’re at the beginning of your Lyme journey. I’m always here for you. M
Scheduling probiotics, medicine, and supplements is a challenge. With probiotics, you have to wait before eating or taking meds, then juggle what goes on an empty stomach with food. Can’t forget the shot to the stomach three days a week. Adjusting the new meds has not been fun, I’ve been stoned out of my mind the bulk of the day, then a massive headache moves in, then time to get stoned again before bed with the headache.
My gripe is it’s not being stoned, it’s brain fog with the floor moving under your feet. David has to take me to appointments since I can’t drive. I’m a sight to see, a woman, stoned out of her mind trying to maneuver a cane while walking.
I had my first appointment with a new Cardiologist yesterday, he has Lyme Disease experience with a specialty in blood flow. He is one of three doctors who will manage my Lyme journey. The RN performed an EKG, then his Assistant reviewed my medical history, asking what seemed like 1000 questions.
The doctor is next, we talk about how Lyme can affect blood flow in the heart and the entire body. The general exam with discussion on the test he has ordered. I left wearing a Holter Monitor which comes off at 2:45 PM today. I push a button on a small device, and put it up to my chest anytime I feel dizzy, have cardiac pain, trouble breathing, etc, etc.
I leave with the schedule of tests for next week which takes 3 1/2 hours when to pick up medicine for tests and the great news is to show up fasting. A couple of tests I’ve done it multiple times due to my heart condition. The Tilt Test is what it sounds like, the table moves to a head-down position for 30 minutes. The test is more frightening than giving me a shot. They may see a panic attack instead, that’s a lot of time without control and no way to escape.
Echo Cardiogram
Q Sweat Test-Study of Sudomotor response assisting in the diagnosis of small fiber neuropathy
Tilt Table with Trans Cranial Doppler monitors mean blood flow velocity
Tilt Table with ANSAR-Determines how well Autonomic Nervous System is functioning
Tilt Table with BIOZ-Determines the heart’s ability to deliver blood to the body
Tilt Table with QST-Assesses sensory neuropathy
Metabolic Stress Test
Lipid Profile
I have blood work from last week to complete, 20 plus vials get me as excited until she says the stool sample requires freezing! I’m now 1 hour 45 minutes before the monitor comes off. The time for a shot and hand full of pills. Are we having fun yet?
My heart and soul go out to those struggling with Lyme, it’s a long complicated journey. I know you’re strong enough to fight the virus in your body, though it may not feel like it today. I look to the survivors before me for support during my journey. Let’s all pray for each other, that’s what support is about.
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