My mother, stepfather, and father abused me until I was a teenager. All the scars hurt particularly of my father who sexually abused me. It’s hard to wrap your head around sexual abuse. My father committed suicide in 1992. It was an extremely difficult time, my grandmother never recovered he was her only child. In my father’s suicide note, he wanted me to take care of all the details. Estranged for years but the heart still breaks. Because of how he killed himself, we had to have a closed-casket funeral. It’s very hard to reconcile death when you can’t see them. I gave the eulogy however I don’t remember.
I struggle with Treatment-Resistant Bipolar Disorder and the anxiety it brings. I was diagnosed at 19 years old struggling for years without medication or over medicated. In 2005 I had the Vagus Nerve Stimulator implanted. The device sends electrical signals to the brain to increase Serotonin. I have taken over 40 prescriptions or protocals. Some worked for a while then you have to try another mix. I thought the VNS device would keep me on the rails. Naïve thinking on my part. I was not as lucky as many in the FDA clinical trial. I realized the device was like any other prescription and it was another that didn’t work.
I’m 50 years old, and the Black Dog drags me down deeper as I age. I’m alive with the help of God, my Husband, my Therapist, and my Psychiatrist. I’m blessed with a husband that won’t give up. It takes a village.
I hope we can build a resource for all including the ones who love us. Please leave your thoughts in the comment section. Your thoughts help make me a better person and blogger.
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. If 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, and 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, and 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 the 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 a handful 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.
So much time has passed 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 of what goes on an empty stomach, which with food. Can’t forget the shot to stomach three days a week. Adjusting the new meds has not been fun, I’m stoned out of my mind the bulk of the day, then massive headache moves in, then time to get stoned again before bed with the headache.
My gripe, it’s not a being stoned, its 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, women stoned out of her mind trying to maneuver a cane while walking.
I had my first appointment with new Cardiologist yesterday, he has Lyme Disease experience with a specialty in blood flow. He is one of three doctor’s 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 then out the entire body. Then 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, put up to my chest anytime I feel dizzy, cardiac pain, trouble breathing, etc, etc.
I leave with the schedule of test for next week which take 3 1/2 hours when to pick up medicine for test and the great news to show up fasting. A couple of tests I’ve done 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’s
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’s
Metabolic Stress Test
Lipid Profile
I have blood work from last week to complete, 20 plus vials get me as excited as the stool sample that requires freezing! I’m now 1 hour 45 minutes before the monitor comes off. Then time for a shot and hand full of pills. Are we having fun yet?
My heart and soul goes 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.
FALL HAPPENED ON BRICK STEPS. I WAS TRYING TO SAVE AN EARTHWORM.
OUCH! Damage to forehead, black eye, scrapes and stabed myself with Landscape light. So glad it was plastic. It tore thru two shirts. My entire for head turned black.
I will include this photo in Falling section. Sometimes, it’s better not to follow me. Xx M
It’s interesting the events our mind suppresses or forgets. I have no emotion talking about the physical and emotional abuse at the hands of my mother and step father. I have disassociated memories of sexual abuse by my father. I know it. My therapist and I have talked about it, she doesn’t push and knows if the door opens I’ll talk. What I will not do is force my mind and body to endure pain it’s not ready for. I have a good perspective on what I’ve survived and the methods our mind uses to deal with our deepest pain. I’m not sure if this particular memory was forgotten or suppressed. I had no emotion as my therapist was almost brought to tears.
I saw a story on the news about a 8-year-old girl tortured by her parents in some way. I don’t recall the circumstances. I always plan what I want to talk about but this day was different. I sat down and the memory of the little girl crossed my mind. I asked her if she had heard the story then adding my thoughts. I started to cry which I do easily for others in pain. As we talked about what type of parent would do that, a childhood memory flooded over me. The tears dried and it was if I was talking about someone else. When I was 8 years old I started having terrible side pains and daycare called my mother. She didn’t take off early and it was maybe 3 hours before she arrived. At that point I could barely walk and could not walk and breath. The supervisor thought I had an appendicitis attack and should get to the hospital right away. It was Halloween night and I didn’t want to miss out on the candy but pain was taking over my small body. My mother was angry for ruining things for my brother, nothing new about that. I guess we did not have insurance since the first hospital turned us away. We are talking early 1970’s. She drove to the county hospital and I waited on a bed until the people bleeding and dying received treatment. Halloween night is one of the busiest nights of the year with more shootings than normal. The emergency room was full and I was outside a mans curtain to wait my turn. During this time my mother left to take my brother to trick or treat. I didn’t realize until a nurse asked where she was. I said she talked to a nurse and went home. She was a big woman and I knew nobody gave her any shit. Asking why in the hell my mother would leave me there. My answer did not sit well with her, I knew a beating was in store for me. One thing to keep in mind is the county hospital is in the hood in one of the worst areas of Dallas. This is not a place an adult would feel comfortable let alone a child. I was on my side crying in pain and saw the man thru the curtain. He was an older man and he had what looked like wires coming out of several places on both arms. My eyes caught his, I ask does that hurt. He was a kind man saying not as bad as my pain did and then where was my mother. I told him how upset I was that my brother would not share his candy with me. He looked shocked my mother would leave me there. My mother eventually came back in the greatest of moods and was raising her voice at the big nurse. I was rooting for her to punch my mother if the mouth or grab her by the neck. I have no doubt it happened many times getting drunks under control.
The doctor didn’t think I needed surgery, just to stay overnight for observation. For a second I was glad until rolled to my room. The hospital was so overcrowded I hade to sleep in a baby bed. That is the last thing a kid (big girl) wants to hear. I cram myself in the bed and they pull the side up. It was so dark in there I thought I was alone until babies started crying. Which made it much worse for me. Not only did I have to sleep with my legs pulled up, babies are crying and my mother is home in her comfortable bed.
You would think at this point in the story I would feel some emotion but my mind switches back to the little girl. My mind turned a switch, my story was over, no big deal, that was my mother, that was my life. I couldn’t help but cry for the other girl. How can people do that to their children. As I’m talking to my therapist my story and pain never crosses my mind again. That was several years ago, it’s buried and popped back up last week.
It’s been an emotional month with thoughts of my father’s suicide and writing about him for the first time. I never grieved my father, the emotions caught me by surprise. It’s been very confusing because my father was one of my abusers. I am having health issues which is stressful. The Black Dog has come to see me. I have seen a Neurologist for three months, having test after test with no answers. This weeks appointment was no different, no diagnosis. I understand there is not always a clean answer. Three years ago I started down a similar path looking for answers to my heart issues. It was an extremely stressful two years looking for an answer. I laid my folder aside to give thought to my next step. At the moment I’m thinking of doing nothing. I have spent 9 years out of 13 years taking care of my grandparents until their death. Months after my grandfather died, I became suicidal and spent close to a month hospitalized. I want to know who am I now. I would give everything for my grandparents and trying to stay alive. My husband thinks I worked so hard for so long my body crashed. My mind did to. I can’t think about doctor’s appointments week after week. I want to live! I’m 50, the slate is clean. I’m ready to find me. I haven’t had my hair cut in 8 months, rarely leave the house and could not tell you for a million dollars the last time we ate out. Those were my decisions, my husband is extremely supportive. Everyday he comes home amazes me. Life with me is not easy. I have abuse issues and Bipolar Disorder. I don’t smile much anymore, just realized while writing this. I want to move forward rebuilding my life. I want to smile and take time to smell the roses with my camera. I wore the same mask in 10th grade. The difference is I was an alcoholic. It was easier to hide behind a bottle. I could always blame my behavior on being drunk.
I was Kevin’s age when diagnosed with Bipolar Disorder. A lack of understanding and feelings of shame, I kept a lid on my problems, until boiling over. I did not accept my mental illness until my father committed suicide in 1992. His death sent me down a path of research and learning how to take charge of my medical care. I accept Bipolar Disorder is not curable at this time yet confident in the future.
Face to Face time with doctors is shrinking as payments from insurance companies are further reduced. No longer are the Patient Consumer Information pamphlets included with prescriptions from manufactures, they cost money. The medication information we receive from pharmacies is a cover your ass view of a few possible side effects. Doctors work on reduced rates leaving no choice but see more patients. I believe we are due the information to manage out health properly.
What do I mean by managing our health properly? We have to take responsibility to gather information the doctor doesn’t have time to give. If lucky doctors allow 15 minutes per patient. How much information can you get in that amount of time. Especially if its a new or complex illness. We are our best advocates, we have to hold doctors accountable for the information we need. It is our responsibility to understand our illnesses and medications. Doctors do not have all the answers. You have to clarify communication, don’t get caught up in “it’s the doctor’s responsibility”, wrong. Two people are in the equation and you’re the sick one. These steps may help the journey to survival and beyond. Critical to getting well is seeing the right type of doctor. A medical doctor is not a mental health specialist, has no business dispensing RX’s. Get a referral , if not you’re a trail and error for what they think will work. Not always in you best interest. Not to mention the side effects of pick and choose.
Education is a powerful tool to build confidence, confidence you’ll need to talk toe to toe with doctors. The first place I head is the Internet. I’m one of the patients doctors don’t like. I come in with my note-book, recap our last meeting and let them know I have several questions. I spend my time researching the ailments. What are the most important symptoms. I use the info to put a short list of questions together. I ask next steps if don’t have a diagnoses. Doctors don’t have enough time to spend with each patient so I go in ready. I’ve included two resources which may help with your education. FDA.GOV is a great resource if you take prescriptions. You can find everything needed including Consumer Prescription Inserts we no longer received from medical companies.Medwatch a FDA.gov department provides label changes, warning letters, recalls on specific drugs and medical equipment. The database is extensive however some of the tools are cumbersome at first.
Face to Face time with doctors is shrinking as payments from insurance companies are further reduced. No longer are the Patient Consumer Information pamphlets included with prescriptions from manufactures, they cost money. The medication information we receive from pharmacies is a cover your ass view of a few possible side effects. Doctors work on reduced rates leaving no choice but see more patients. I believe we are due the information to manage out health properly.
What do I mean by managing our health properly? We have to take responsibility to gather information the doctor doesn’t have time to give. If lucky doctors allow 15 minutes per patient. How much information can you get in that amount of time. Especially if its a new or complex illness. We are our best advocates, we have to hold doctors accountable for the information we need. It is our responsibility to understand our illnesses and medications. Doctors do not have all the answers. You have to clarify communication, don’t get caught up in “it’s the doctor’s responsibility”, wrong. Two people are in the equation and you’re the sick one. These steps may help the journey to survival and beyond. Critical to getting well is seeing the right type of doctor. A medical doctor is not a mental health specialist, has no business dispensing RX’s. Get a referral , if not you’re a trail and error for what they think will work. Not always in you best interest. Not to mention the side effects of pick and choose.
Education is a powerful tool to build confidence, confidence you’ll need to talk toe to toe with doctors. The first place I head is the Internet. I’m one of the patients doctors don’t like. I come in with my note-book, recap our last meeting and let them know I have several questions. I spend my time researching the ailments. What are the most important symptoms. I use the info to put a short list of questions together. I ask next steps if don’t have a diagnoses. Doctors don’t have enough time to spend with each patient so I go in ready. I’ve included two resources which may help with your education. FDA.GOV is a great resource if you take prescriptions. You can find everything needed including Consumer Prescription Inserts we no longer received from medical companies.Medwatch a FDA.gov department provides label changes, warning letters, recalls on specific drugs and medical equipment. The database is extensive however some of the tools are cumbersome at first.
Shaggy my Blonde Boy, is always ready to play. I keep the house quite during the day, not much playing lately. David comes home and Shaggy runs finding a toys and chases him until Shaggy get his fill. His mind is always ready for anything. Banjo is my mixed colored Australian Boy. His name was Banjo at shelter. I knew right away Banjo would keep his name. I’ve taught him a number of commands and tricks. He’s older than we are so he takes it pretty slow. Yes, he does still sleep on blankly.
“You can’t be that kid standing at the top of the water slide, overthinking it. You have to go down the chute.” From BOSSYPANTS by Tina Fey
I wanted to drop a short note to let people know I’m ok. I have good and bad days however it’s easy for me to remember so many have life much worse. Today is one of the rough days which are frustrating and they fuel my desire to fight harder. I am planning now for activities once I’m well. I get very excited looking at my to do list, even at 51 yrs old there are so many things to learn and see. God has kept my depression at bay which makes each day a little better. I like to share with people what I learn on this Lyme journey, so there is a photo if you ever need to dispose of used needles. In the US LabCorp will take used sharps properly dispose as medical waste. I have also enclosed one of my fav photos. Getting a diving certificate was difficult for someone who is claustrophobic, I asked the teachers to spend extra time with me in the pool we trained in and this photo was taken the day I got certified. It was a big accomplishment not as much for the diving as for the self-confidence. I had not found my wings by 1987, getting certified was the first dream I acted on and accomplished. It felt great. Forget is was Feb. in Texas, F 45 and we tested in a rock quarry only 33ft deep. Three pulled out for hyperthermia. I did not realize at the time and it was a shock stepping out of the shower later. I had sever mask squeeze and both eyes were blood-red from the burst blood vessels. It was glorious day in my memory bank and have seen another life underwater. Thanks for standing by me.
Container for used needles. I take three B12 shots a week.
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.
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.
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.
Last week I was diagnosed with Lyme Disease adjusting to the new meds is kicking my but. Not to worry, my trusted blogging sister Army of Angels jumped in to make this weeks selection. Big hugs for your help AoA. There would not be Throw Back Thursday this week without her help. I can’t wait to see what she picked. Sit back, take a little break to enjoy some tunes. Warrior
Update on Lyme post. As you read about Lyme you will hear about co-infections. When a tick bites you every infection its carrying transfers to you. Another type of co-infection is from the virus moving thru your body. If the virus makes its way to your organs including the heart and brain. The menacing virus causes damage inside the body other than Lyme. The co-infections can get extremely painful. I hope you will seek out the more information to get the true horrifying story. Education may save your life or someone you love. Warrior
Here are several great resources to learn in-depth information on Lyme and Tick Borne Illnesses.
On YouTube:
Interview with Daryl Hall of Hall and Oats
Dr. Horowitz: Lyme Disease & Chronic Illnesses ( Dr. Horowitz is the foremost expert on Lyme, invented an exact test performed at IGenex )
Lyme Disease: History & Controversies included proper way to remove tick.
Additional resources ***http://justinandchrista.ca This is your total education on Lyme, Husband films wifes struggle with Lyme over 5 years. THIS IS A MUST She screams in agony, it’s heartbreaking and may disturb small children.
ILADS International Lyme and Associated Diseases Society The association provides training for doctors for Lyme certification, tons of stats and how to find a Lyme Literate Doctor.
Dr. Horowitz’s latest book, Why Can’t I Get Better: Solving Lyme and Chronic Disease ( downloaded but haven’t started yet )
If you want every detail, this presentation is for you. Search for: Advanced Topics In Lyme Disease by Joseph J. Burrascano Jr. MD. The presentation’s offers Diagnostic Hints and Treatment Guidelines For Lyme And Other Tick Borne Illnesses. Sixteenth Edition October 2008.
It’s relevant today as the day written. Time to dust it off. Let’s hear what you think.
This week several journalist, American and Iraqi soldiers died in an attack while outside their vehicle doing an interview. Journalist Bob Woodruf isn’t even back to work from his brush with death and now a competing station loses several employees. Media giants will do anything to boost ratings and bottom line. If employees and soldiers have to die, it’s the cost of doing business. One of the top female journalist was gang raped in Egypt, being pulled by each limb. She later said thoughts of being pulled apart crossed her mind. Then put on a happy face and went right back to Egypt. How can we set back and accept this? How can the CEO of these corporations live with blood on their hands? How can shareholders not hold them accountable? It is a shame profits drive them to allow journalist to make a decision to put their life in danger.
The military shares responsibility, now is time to review policy on the sheer number of journalist on the ground, embedded with troops and reporting from hot zones. Journalist have chronicled wars from behind the lens for years. It is important to have the current news today and for history.You’re not casting the next Reality Show. It’s war or hot zone, journalist are endangering the lives of soldiers, locals and themselves. It is a ratings war that can only be won by someone losing a life.
This is REALITY and journalist need to get out-of-the-way and let our soldiers do what they trained to do and come home alive not do interviews in a hot zone.
I believe FGM is the most horrific form of child abuse. The article is difficult to read. If you are not familiar with the practice, I pray you’re outraged. I had no idea the practice of Female Genital Mutilation was a growing trend in the US. I found the article on NBC.com under World News with a 3/31/14 original publication date.
Horrific Taboo: Female Circumcision on the Rise in U.S. BY ANNABEL ROBERTS AND MARIAN SMITH
When Marie was two years old, a woman in her village in Africa cut off her clitoris and labia. Now 34 and living thousands of miles away in New York, she is still suffering. “I have so many problems, with my husband, with sex, with childbirth,” she told NBC News, withholding her real name to protect her identity. “The consequences on my life are all negative, both physically and psychologically.”
The practice of Female Genital Mutilation is common across much of Africa, where it is believed to ensure sexual purity before marriage. But Marie says FGM is also “very common” in some communities in America. “The pressure to get daughters cut is great,” she said. According to the Centers for Disease Control and Prevention, at least 150,000 to 200,000 girls in the U.S. are at risk of being forced to undergo cutting. The CDC says “at risk” because there are no actual records of the practice, only estimates – and old estimates at that. Its latest data date to 1997, the year after being banned in the U.S. But citing anecdotal evidence from health professionals and frontline workers, experts who work with victims and their communities say FGM is on the rise.
“It is hard to believe this is the real number because of how much [FGM-practicing] communities are growing, especially in the last two or three years,” said Mariama Diallo, African community specialist at Sanctuary for Families, a New York-based non-profit dedicated to helping domestic violence and trafficking victims. Her organization could only extrapolate using census data when it issued a report on the growing problem last year. Immigration to the U.S. from countries in Africa quadrupled between 1990 and 2011 from 360,000 to 1.6 million according to a recent report released by New York City’s planning department. “The numbers need to be updated – but this needs funding and no one is interested,” said Dr. Nawal Nour, founder of the African Women’s Health Practice at Boston’s Brigham and Women’s Hospital.
Lack of Prosecutions
There are different degrees of FGM, the most severe form being the narrowing of the vaginal opening by repositioning the labia and stitching up the opening, sometimes leaving a hole the size of a matchstick for the passing of urine and menstrual flow. The cutting is often carried out without anesthetic on girls between infancy and the age of eight. Victims can suffer numerous physical and mental health problems: severe abdominal pain, vaginal and pelvic infections, pain during sex, complications during childbirth.
In Phoenix, Arizona, a staggering 98 percent of Somali women being treated at the Refugee Women’s Health Clinic have been circumcised, founder Dr. Crista Johnson said. She estimates the Somali community is at least 12,000-strong. Johnson has supported such victims all over the country – from Washington,D.C., to Michigan to California – and says the spike in immigration from such communities has astonished in recent years. “The number has easily quadrupled because of migration patterns,” she added.
So with such numbers, why has there only been one successful prosecution in the U.S.? “People won’t report against their families,” Marie said. Since the mutilation is usually organized by the child’s mother or grandmother and supported by the father, many cases go unreported, case workers say. “Even if there is protection from the government, it is difficult for a victim to disclose it through fear of retaliation from their family, and fear of losing their family,” she said. Still, experts believe the law is a useful deterrent. Johnson says there is a sense of resignation among the families that they must abide by U.S. laws. Nour agreed, saying: “Parents are afraid to do anything that will get them deported.”Taboo Topic
For Americans on the outside of communities where it is practiced, FGM is such an unknown that many medical workers, law enforcement and child protection officers are not informed on how to proceed when confronted with it. “This has been such a taboo topic, we [haven’t been able to] take it out from under the table. We need to make it something that can be discussed,” said Shelby Quast, senior policy adviser of Equality Now, an international women’s rights NGOI“There has to be a huge shift so that we identify this as a form of violence against girls – and not something that’s protected as a cultural and religious tradition,” she said. Support for victims is also comparatively poor in the U.S., health workers say. Nour in Boston and Johnson in Arizona run the only two clinics dedicated to supporting FGM victims in the U.S. Comparatively the U.K. – with only a fifth of the population of the U.S. – has 15 specialist clinics. British midwife Comfort, who runs one such operation, recently visited the U.S. to research American facilities.
Coming from Europe, where campaigners are making strides in turning FGM into a mainstream issue, Momoh was shocked to see “no proper coördination and hardly anywhere for girls to go for support,” she said. “The situation is well, well behind the U.K.” Campaigners say reaching out to practicing communities and educating them about the risks and consequences is critical to ending FGM.”If the police are called and told a child is at risk, what will the policeman do if he does not know what FGM is? We need to tell them about it, tell them it’s a violation,” Diallo said. “Every single professional needs to know they have an obligation: doctors, nurses, school teachers…. Everyone has to see it as their responsibility to protect children.”‘Shame and a Prison Term’
In France, which is also home to significant communities which traditionally practice FGM, experts say enforcing the law and outreach to practicing communities must go together. In stark comparison to the single American case, there have been over 100 successful prosecutions in France, with prison sentences for those found guilty of cutting or of allowing their daughters to be cut. “I don’t want my kids to undergo the same fate as me. “There, FGM is prosecuted using existing child protection laws – there is no specific anti-FGM legislation. “There was no need for a special law that would amount to pointing the finger towards immigrants,” said French lawyer Linda Weil-Curiel, who has spent years bringing cases against suspected perpetrators to court. “We had enough legal provisions in the penal code to prosecute and punish the ‘mutilation of minors,’ and the penal code is applicable to everyone on French soil, without discrimination.”She believes these prosecutions helped reduce the practice. “The large publicity in the media of the trials sent a clear message to the families: This is what you are going to get – shame and a prison term – if you do not respect the law.”
I went to my General doctor for shoulder pain three months ago. He refered me to a Neurologist. After several test, I know both legs have nerve damage, I have abnormal brain waves in two areas with no seizures and I’m falling more.
She did two test to measure my brain waves, one test lasted three days. My follow-up appointment next week. I’m hopeful for an answer. I’ve been told the MRI didn’t have lesions. What does that mean? We can rule out MS? The doctor told me to buy a cane, try walking with a cane and balance issues. I scare myself practicing in the house.
My stress levels are higher than normal because it took two years to diagnosis my heart problems. The wait was frustrating, scary and painful. I fell into the darkest depression, delusional, hallucinating, I wanted to die. I stayed in-house for a week of ECT treatments and three weeks of outpatient treatments. I’ve survived many adversities. My past has made me a survivor. Having an awesome Therapist which makes a huge difference.
The challenge is keeping a check on my mood daily without focusing on my illness. Easy to say right? Long term stress can kick me down a dark well.
I started this blog to learn, share and relieve stress by talking to people who understand. The health issues I’m dealing with have nothing to do with my Mental Illness.
MOST BEAUTIFUL CLOUDS, STORM MOVING IN
lookingforthelight.blog 
You must be logged in to post a comment.