I like Bucket List Friday, it jacks me up for the weekend. I can’t recall a time when adventure was not on my mind. Many years there wasn’t a dime to spare but dreaming was fun. I’m the thrill seeker who would travel half way around the world to bungee jump off the highest bridge. The ultimate scare you to death experience now marked off after two serious car wreaks. This my friend Jackie (curly hair) who lives in England. Our birthdays are close together and we enjoyed celebrating together. Jackie is a ski instructor back home, we spent a Christmas in Breckenridge, CO. Everyone was skiing, her kid didn’t use poles, she did Black Trails, they were having a blast. I fell getting off lift every time eating snow. Back to balloon adventure. We live in a large city with large cities around us, we lift off heading for the cow pastures in the distance. The sunset slowly went down giving a beautiful light display. We were landing and the wind picked up, turbulence is all. Before I know it we hit a tree and bounce up and over to another tree. I wasn’t scared of crashing, my interest was cow patties and cold champagne waiting. The mishap added to the adventure. You will find Ballooning in French country side on my list.
I would love to hear what you have on your Bucket List. Have a great weekend. XO Warrior
Four months ago I wrote the last Lyme Journal Entry. I thought my strength would allow me to blog through the illness. Then the 5-6 month point turned my life upside down and it’s been hell. I fired my Lyme doctor and not taking meds at this time. I know many are wondering why the hair photo? I was losing hair by the handful and showering was nearly impossible with longer hair. When you can’t stand, lift your arms or sit down without falling, showering is a problem. I planned a nice Army shave but David would not help. I grabbed the scissors and cut eight inches off. Feels great, looks like crap. Who cares?
I’m sure people have noticed my positive attitude is quickly sliding. The mounting problems are not all Lyme-related. My cat Truffles is dying, lack of communication from my doctor, getting so sick, and walking some days is extremely painful. Our bed was too hard so I moved to a couch months ago. I live on the couch now. Not bad for sleeping except all the animals want to go out, poke me in the back, and the cat wants to attack me. Even attempting to get enough sleep is impossible. With Chronic Lyme Disease sleep is your best friend and a key to survival.
Let me share some Lyme politics for newbies.
Most of the expert Lyme Literate Doctors, are not practicing. Several years ago doctors were watching people die using CDC standards, which state patients can only receive 2-4 weeks of antibiotics at most. The Lyme doctors who understood how the viruses worked knew 4 weeks was a joke. The doctors worked together helping each out calling in antibiotics for the other patients. I have Chronic Lyme, and it can take 1-3 years to get well. Medication is one of the many ways to heal. Getting enough sleep is number one after the meds., take supplements, gluten-free diet and eat foods to help your body heal. No Coffee and drink only electrolyte water.
There was a huge division among Lyme doctors when the CDC allowed several doctors to patent the virus. Makes no sense to me. For years patients were clueless of the division. Both sides fought hard with the CDC to prove their data, from the videos on YouTube it looks like the battle was lost before the presentations started. The expert Lyme Literate doctors were quite vocal and a witch hunt is what followed the meeting. Doctors appeared before the Medical Board and were not able to practice, some for up to a year. Several doctors lost their clinic and everything they owned trying to keep their patients alive. It is a complete mess the CDC let happen, needless to say, I’m pissed. Just a little more background info to burn into your brain.
Many Chronic Lyme patients become so sick they are not able to work. The first reality is you no longer have insurance and can not afford new insurance if you could buy. I’ve watched video after video on YouTube of people with good-paying jobs, racking up several thousand dollars in doctor bills and many having to file bankruptcy, losing everything. One video told of a couple who owed their parents $500,000. Lyme affects everyone in your family, friends, your health, and financial security.
It’s going on Spring in some parts but summer will be here quickly. I don’t want any of you or your family members to struggle with a virus that looks like a worm. The viruses travel through the blood until they can find a way to your major organs. Lyme likes to get cozy in the liver, kidney, heart, and brain. I have three tick-borne illnesses and Epstein Bar Virus. I have cognitive issues, my eyes constantly see things moving by my peripheral vision and balance are fleeting. I was in the bathroom two days ago about to reach for the medicine cabinet. I slammed into a wall hurting my writs and several fingers. If that wasn’t enough I slid down the wall falling on the toilet and hurt my leg. The doctors don’t know how much of your ability will come back if any. You have to keep fighting.
Why I fired my doctor. My husband and I formed an impression at the first appointment, not so good. I was desperate to start treatment and had no other options.
* I start a couple of drugs until the Lab work is back. At the follow-up appointment, the first words out of his mouth are you are in a great deal of pain. REALLY? His communication and organization skills are lacking. No pain meds were prescribed. He has to call someone in to bring him something several times during the appointment.
*I’m loaded down with over 50 pills to take a day plus 15-20 supplements and sleep all I can. The equation doesn’t work. I have gastro issues and the high-powered antibiotics made me nauseous all the time. I asked to have a PICC line in my arm to give my stomach a break. He did not plan to use a PICC line? Almost every patient gets a PICC line so they can fill you full of drugs and bypass your stomach. My wheels are turning. He had lab work for me to do, but I didn’t do it. He never asked about the Labs. He said my Lead levels were three times higher than normal, in the dangerous range. No follow-up test was ordered, it was like “So you know”. I’m scared, my brain is on overload, the test said current and ongoing exposure. I spent about two weeks looking for an answer. I looked at the top of the report one day, it wasn’t my report. Admin acted like no big deal. HIPPA laws are not new.
With the list of experts I start going down the list, ONE of the leading Lyme Literate Doctors still practices. The doctors called before the Medical Board and CDC. Now are full-time advocates/researchers. I phoned his office in DC and they are taking patients. When you have cognitive issues filling out 50 pages is crazy. I stayed up last night to get everything I could without waking my household. With God’s help, I will finish the paperwork tomorrow and get an appointment in the next month.
ILADS is the professional organization Lyme Literate doctors belong to. I saw the tab on site for ILADS Protocol on Lyme. I jumped for joy. Let’s hit them with our best shot. We have boxing gloves on and the truth will come out. The document was extensive for the different stages of Lyme or other tick-borne illnesses. I felt so happy that others may not have to suffer shortly. The document was well-researched by leading scientists, leading hospitals, and large populations of people. I cheered when I read research that outlined how the current system is incorrect, and they went all out. On the issues of insurance, extensive research with real patients exposed what the CDC is keeping from the public. If you want to learn more about Lyme, YouTube has so many videos, you might not have to go anywhere else. If you like the medical jargon go to the ILADS site.
A shout out to others who suffer from Lyme or tick-borne illness. I think of you, pray for you, and send good karma your way.
I had many adventures in my head and wrote my first Bucket List in 2015, it was invigorating to have it in writing yet I was struggling with Chronic Lyme and IV Therapy, my joy didn’t last until I went into remission years later.
A sincere thank you and a big hug for all the well wishes. I love hearing from you, you bring a smile on days when there are none. It will take a while but “I’ll Be Back”. XO Warrior
BUCKET LIST STARTED 2015
Tango Lessons
Visit Germany where my family lived before coming to America
Dive again, in 1999 I had panic attack and have not tackled fear
Enjoy Argentinian Wine Country
Be a RAINN Advocate Speaker for Child Abuse and Rape
Volunteer for RAINN to offer support to women while going thru Rape Kit process
Provide pastoral support as Ordained Minister with a focus on dying children and the elderly.
Swim with Manatees, Dolphins, and Sharks, Sharks only while in a cage.
Ride a Camel and Elephant in a native environment, treated ethically.
See every inch of Australia. Australia is several countries in one.
Hot air balloon ride through the French countryside.
Visit countries safe for American women traveling alone. To build confidence, I like to travel alone to foreign destinations. Germany, Istanbul, India, Dubai, and Alaska, that’s a good start.
Learn to rescue animals who coexist in our neighborhoods, like ducks, rabbits, owls, bobcats, and coyotes.
See fine Turkish rugs being made
See Silver Back Gorillas in Uganda
My organs save a life
I think seeing photos of past adventures will jack up my motivation.
Church of the Spilled Blood St. Petersburg, Russia
It’s 5:02am, I’m jamming picking Thursday tunes. I have so much fun deciding what to play each week. I hope you enjoy as much. I cover the years this week. Set back, adjust headphones, volume up and flash back to the memories. XO Warrior
I’ve been blessed in my live, my grandparents love, I’ve loved and been loved. I’ve moved beyond the trauma for physical and sexual abuse. I have traveled and enjoyed lifelong memories with friends. Lyme Disease has halted most of my enjoyment yet I know 2015 is a new year. I picked this week songs for the universal message. XO Warrior
I’ve been blessed in my live, my grandparents love, I’ve loved and been loved. I’ve moved beyond the trauma for physical and sexual abuse. I have traveled and enjoyed lifelong memories with friends. Lyme Disease has halted most of my enjoyment yet I know 2015 is a new year. I picked this week songs for the universal message. XO Warrior
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.
My name is Melissa Dohme. I am twenty-two years old and I live in Clearwater, Florida. On January 24, 2012, I found myself surrounded with family, covered in bandages, connected to machines, with tubes down my throat, praying and thanking God for saving my life. Hours before this moment I was lying alone in the road outside my home, covered in blood, taking what I thought would be my last breath. I had just been viciously attacked, beaten, and stabbed 32 times. How could this happen?
Looking back three years prior, I remember the exact moment I met this extremely charming, sweet, and funny guy named Robert Burton. When we started dating, everything was perfect, but as I prepared for my high school graduation, things began to change. Robert became extremely jealous, controlling, and short-tempered. I was going through verbal and emotional abuse throughout our two-year relationship without knowing it was abuse. The violence turned physical in the last few months, and by then I felt completely trapped. He would tell me if I was to leave or tell anyone about the abuse, he would kill me, my family, and himself. He began attempting suicide to scare me, but would stop and threaten me with weapons to prove he was serious.
One night, I had the opportunity, courage, and strength to run away and call the police–and finally, Robert was arrested for domestic battery. I felt my shackles of shame and fear release and I could safely end the relationship. After three months of peace and healing, Robert began calling me repeatedly in the middle of the night. He had one request–a hug. He was crying and said, “After all we have been through, I just need closure to move on after the terrible end to our relationship.” He promised to leave me alone forever if I just met him for a hug.
I ignored my intuition and walked outside. I was immediately ambushed. 19 stabs to my head, neck, and face; 13 stabs to my hands and arms in an attempt to defend myself. Two teens nearby heard me screaming, attempted to intervene, and called 911. I owe my life to these two angels. Once Robert believed he succeeded in taking my life, he drove away and attempted suicide. We were both saved that night, and thankfully, he is now serving a life sentence with no chance of parole.
When first responders arrived, I was alert enough to identify myself and him, despite hemorrhaging severely from cut arteries in my neck. I was airlifted to the hospital where I flat-lined four times, received twelve units of blood, suffered a stroke in my cerebellum, had a fractured skull, nose, and jaw with missing teeth, facial paralysis, stabbed larynx, and was severely beaten. It’s a miracle I am still alive today — even the doctors say so. I know God saved me, He couldn’t stop what happened but He did perfectly line up each individual after the attack who had a hand in saving my life.
I believe I was saved to tell my story. Through my faith I learned to accept, forgive, and move on. I realized I was given a voice for those who are too afraid to speak or no longer have the chance because their abuser succeeded in taking their life. I was saved to educate teenagers of the dangers of dating violence. When I was in high school, no one spoke about dating violence and if they had, I firmly believe I would have never gone through what I did. Following that horrific night, I felt the conviction to speak out, become an advocate, and create change. I now work as domestic violence advocate for a local non-profit organization, Hands Across the Bay, where and every day is a blessing.
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Melissa is a true hero. She turned the horrific events of that night to a mission to educate others. I would be proud to meet her and thank her. She will save someone’s life with her efforts. She is courageous, embodies strength and a passion to help. I would hug her for turning the pain into a positive and not living with a resentful heart. Melissa is a special person. Stories like Melissa’s keep my past pain in perspective reminding me how blessed I am.
In this social media world, kids form ideas of what is right and wrong. They learn from The Nons as I call them. People you think you know from social media may not be who they are. They are not your friends, I don’t think many long-term relationships start here. The reality is that kids’ self-esteem is affected by bullying especially online, which can be nasty.
I was bullied, it started in 6th grade when a rumor was started saying I said something negative about my friend’s cliff palate. Of course, it wasn’t true but that’s how some bullying starts. I was harassed walking home from school and got hit in the back of my head with a coke bottle. I was teased about braces at 12 years old, and the antics continued until I moved to my father’s which meant another school. In eighth grade, I wasn’t bullied. I learned from prior experiences and how to hold my shoulders back.
Social Media is scary to me because many people look at people and say how are skinny and have to do the same. This is where low self-esteem can start. Then sometimes they forget the influencers and they make money on every click Worse yet there are still too many pornographic posts across all platforms.
Children make impressions from day one and share positive language and affirmations. Many people are lonely and looking to make friends, fake friends I remind you. The HUGE problem is you have no idea of the motives of a stranger. I have seen what teens will do.
Teens who are reading and talking, talking trash yourself. They are blinded and don’t realize they’re in trouble or possibly worse.
It’s a total crap shoot and that is why parents have to set hard rules for all kid’s time on the phone, take their fun away, and monitor their computer usage and read some text. After that y
Bullying: Resources for How to Get Help
This documentary explores America’s teen-bullying epidemic. Millions of kids are relentlessly demeaned and physically attacked at school every day. Parents of victims and educators say that a change must take place and everyone can help. Below is a list of resources to help stop bullying and cyberbullying.
For Everyone:
The Bully Project, and ‘Billy’ Movie: The documentary film that sparked a nationwide movement to stop bullying offers stories of those who were bullies and resources for parents, teachers, kids, and communities on how to deal with and stop bullies on their website. “Bully,” which follows the lives of five U.S. students who faced bullying daily at school, including two who committed suicide as a result, will be in theaters on March 30, 2012.
Stop Bullying Now!:
A resource website sponsored by the U.S. Dept. of Health and Human Services that addresses the warning signs of bullying, how to talk about bullies, how to report bullies and cyberbullying and offers a 24-hour help hotline for victims at 1-800-273-TALK (8255).
For Children and Teens:
Teens Against Bullying: Specifically created to help teens learn about bullying, how to appropriately respond to it, and how to prevent it.
Kids Against Bullying: This was specifically created to help elementary school children learn about bullying, how to appropriately respond to it, and how to prevent it.
STOMP Out Bullying!: A national anti-bullying and cyberbullying program for kids and teens.
National Youth Advocacy Coalition: An advocacy organization for young people.
Trevor Project: A national organization that provides crisis intervention and suicide prevention for lesbian, gay, bisexual, transgender,and questioning youth. They also offer the Trevor Lifeline, a 24-hour, national crisis and suicide prevention hotline for LGBTQ youth. The number is 1-866-4-U-Trevor.
For Parents and Teachers:
PACER’s National Bullying Prevention Center: Offers resources for how to teach kids of all ages about bullying, state laws and what parents can do if their child is being bullied, and peer advocacy groups.
Education.com: Bullying at School and Online: A resource for both teachers and parents on how to help a bullied child.
Teaching Tolerance: Bullying: Offers guidelines and activities for teachers to help teach students K-12 about bullies.
The Human Rights Campaign’s Welcoming Schools Guide: A guide to help school administrators, educators, and parents or caring adults make sure that their elementary schools welcome all students and families. Targeted at addressing family diversity, gender stereotyping, and name-calling in K-5th grades.
GLSEN, Gay Lesbian Straight Education Network: Works with school officials to ensure that transgender, gay, and lesbian students are not harassed or bullied.
Family Acceptance Project: Launched out of the Marian Wright Edelman Institute at San Francisco State University, this organization works to decrease major health and related risks for lesbian, gay, bisexual, and transgender (LGBT) youth.
I care for my 92-year-old Gramps and have been here for five weeks. He had three surgeries in seven days. Without Caregiving 101 training, I learned the hard way.
*Ask the doctor what happens if the procedure does not work.
*If a second procedure does not work, is there a third option.
*What is the recovery time and type of home health services needed.
*Is the surgery necessary for a 92-year-old who is already dying!
I would not have let the doctor do any surgeries on Gramps had I not been so tired and spent more time thinking about what could go wrong.
Gramps went in for non-invasive surgery, but nothing prepared me for the outcome. I’ve been through several surgeries with Gramps. This procedure had not been performed before however it sounded like the least complicated procedure to date. I forgot nothing is normal or non-invasive at 92 years old. We went from going home that afternoon, to having three surgeries over seven days. I made the mistake of thinking the procedure would go as in the past. Age makes all the difference, five years at this stage of Kidney Failure can change everything.
I’m blessed to spend this time with Gramps, we still have a long road ahead. It is emotional and life-changing. I’ve become the parent and he doesn’t like me telling him when to take his medicine. He has raised his voice more in the past month than in my lifetime. It’s hard to take it in stride, I just bite my tongue. Stress has triggered my depression, I struggle to keep myself in check and take care of my Gramps.
Looking for the Light 