Chronic Illness

Fibromyalgia Thoughts #2

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The pain has moved to my lower body, it attacks every joint and muscle I have. For the past 10 days, my leg has caused a big problem, it’s hard to walk. Any pressure on my leg makes me scream out in pain. I can’t stand up by myself unless there are objects strong enough to pull me up. My husband isn’t a little guy and it takes two or three tries because I start to cry out. I have no idea what is happening, this level of pain is new for me. It’s not so much the level but the time in constant pain. I’ve been going to bed between 4:30-6:30 p.m. every night thinking resting is the only answer. So far that seems to be the case. I can now move my knee closer to a normal sitting position. Try getting on and off the toilet, it’s been a painful 10 days. I’ve forced myself to bed in order to get better. I’m not looking for total pain relief, that’s not my goal. Right now I want to be able to get out of a chair by myself. The rest of my body feels the normal everyday dull pain, my shoulder still screams out at night. Pain meds, topical patches and ointments the doctor gave me on Friday have provided no relief. I’m laying in bed with one leg balancing the computer, trying not to walk any more than […]

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Chronic Illness

PAIN COMMUNITY UNITES TO RESPOND TO FEDERAL DRAFT REPORT

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May 1, 2019/ U.S. Pain Foundation The 90-day public comment period for the Pain Management Best Practices Inter-Agency Task Force’s (PMTF) draft report came to a close April 1, with more than 6,000 individuals and organizations submitting feedback. Among those to comment was the Consumer Pain Advocacy Task Force (CPATF), a coalition of pain patient-related nonprofits, including U.S. Pain Foundation, which submitted a 25-page joint letter. In addition to U.S. Pain Foundation, the CPATF letter was signed by the Center for Practical Bioethics; CHAMP (Coalition For Headache And Migraine Patients); Chronic Pain Research Alliance; For Grace: Women In Pain; Global Healthy Living Foundation; Headache and Migraine Policy Forum; International Pain Foundation; Interstitial Cystitis Association; RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and The Pain Community. “We are very grateful that so many patient organizations joined together to respond to this report with one, unified voice,” says Cindy Steinberg, U.S. Pain Foundation’s National Director of Policy and Advocacy and the only patient advocacy representative on the PMTF. “While the draft report holds a lot of promise, from the patient perspective, we had a number of important suggestions for ways to improve or expand on its recommendations.” Of note, the CPATF letter commends the draft report’s emphasis on individualized care and encouraged further emphasis of that point. CPATF also urges PMTF to go further and recommend that the Centers for Disease Control and Prevention (CDC) formally revise and reissue their 2016 guidelines on opioid prescribing […]

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Chronic Illness

CLEARING UP 12 COMMON MYTHS ABOUT MEDICAL CANNABIS FOR PAIN

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April 18, 2019/ U.S. Pain Foundation   Ellen Lenox Smith is Co-Director of Medical Cannabis for U.S. Pain and a U.S. Pain Board Member. She lives with two rare conditions: Ehlers-Danlos Syndrome and sarcoidosis. After years of struggling to find pain relief without side effects or adverse reactions, she discovered medical cannabis. A retired school teacher, Ellen is now a renowned patient advocate and works tirelessly to encourage safe, fair access to all treatment options, particularly medical cannabis. She has spoken at numerous conferences on cannabis access and been featured widely in the media on the topic. She is also the author of two books: It Hurts Like Hell!: I Live With Pain—And Have A Good Life Anyway and My Life as a Service Dog. Below, she clears up common myths surrounding medical cannabis for pain. MYTH #1: ALL  PEOPLE WHO USE CANNABIS MUST BE “STONED” OR “HIGH.” Truth: this only happens if you use too much medication. People living with pain get pain relief; people using it socially and not in pain, get high! In addition, medical cannabis is made of two components: THC, which causes the mental effects associated with feeling high, and CBD, which produces bodily effects. Various strains of cannabis have different ratios of THC and CBD, which means that not all strains create as much of a “high” feeling. MYTH #2: EVERYONE WHO USES THE SAME STRAIN EXPERIENCES THE SAME RESULT TO USING IT. Truth: Each body can have […]

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Chronic Illness

PAIN CONNECTION ADDS FOUR SUPPORT GROUPS AND NEW MONTHLY CALL

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May 1, 2019/ U.S. Pain Foundation   Finding community support is essential to living with chronic pain. With that in mind, Pain Connection, a program of U.S. Pain Foundation, continues to expand its in-person and conference call support group offerings nationwide. Along with three existing monthly “Pain Connection Live” support group calls, there will now be a morning call on the third Thursday of each month from 10-11 am EST. The first call will be May 16. Existing calls are held on one evening, one afternoon, and one Saturday each month. To learn more or register for a Pain Connection Live call, click here. In addition, four new in-person support groups have been added in CA, AL, and NJ. All support groups are led by a person with pain who has received intensive training from Gwenn Herman, LCSW, DCSW, Clinical Director of Pain Connection. Costa Mesa, CA  Date: Second Tuesday of each month. The next meeting is May 14. Time: 11 am – 1 pm Location: Panera Bread at 3030 Harbor Boulevard, Costa Mesa, CA. (Meet against the back wall.) Contact: Kristie McCurdy, MSN, RN, at CRPSsurvivorsOC@gmail.com San Francisco, CA Date: Second and fourth Friday of each month. The next meetings are May 10 and May 24. Time: 12 – 1 pm Location: 1701 Divisedero Street, 5th floor conference room, San Francisco, CA. (Elevator available.) Contact: Cessa Marshal at cessamarshall@yahoo.com or 415-637-1812. Pell City, ALDate: The first meeting will be May 2. Time: 6-7:30 pm. Location: The Brook Besor Coffee Shop, 4204 Martin St. S., Cropwell, AL […]

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Chronic Illness

FDA, CDC REACT TO HARM TO PAIN PATIENTS

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May 1, 2019/ U.S. Pain Foundation Last month, the Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) reacted to the unintended harm to people living with chronic pain as a result of policy measures intended to ameliorate the opioid crisis. On April 9, the FDA issued a Safety Announcement citing “serious harm,” including “withdrawal symptoms, uncontrolled pain, psychological distress and suicide” as a result of sudden discontinuation or rapid dose decreases in opioid pain medication. The FDA will now require changes to the prescribing information for health care professionals that will provide guidance on how to safely reduce or taper patients off opioid medications. The agency states that there is no standard opioid tapering schedule; rather, a schedule must be tailored to each patient’s unique situation considering a variety of factors, including the type of pain the patient has. The FDA is also warning patients not to suddenly stop taking their opioid medication, as this can result in serious problems. Even when patients gradually reduce these medications, they may still experience withdrawal symptoms such as chills and muscle aches. If these are excessive, patients are encouraged to contact their health care provider. Feeling the pressure from the FDA action, a letter from more than 300 health care practitioners, and increasing news coverage of harms to people with pain, three CDC Guideline authors, writing in the New England Journal of Medicine, said the Guidelines have been misapplied and applied inflexibly in […]

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Chronic Illness

U.S. Pain Foundation

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U.S. Pain Foundation is a 501(c)(3) organization dedicated to improving the lives of people with chronic conditions that cause pain. HERE ARE SOME OF THE PROGRAMS WE OFFER: Awareness & Advocacy Programs INvisible Project Advocacy Program Pain Awareness Month Points For Pain Medical Cannabis Program Support & Empowerment Programs Pain Connection Pain Ambassador Network Pediatric Pain Warriors Share Your Story Education Programs Take Control of Your Pain Learn About Your Pain Pain Medicine 411 Pain Education Portal (PEP) Talks Clinical Programs National Coalition of Chronic Pain Providers and Professionals To learn more, visit: uspainfoundation.org Melinda Sandor Ambassador-Texas U.S. Pain Foundation

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Chronic Illness

I’ve Been Nominated For The Disability Award

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I’m blown away Stacey Chapman at https://fightingwithfibro.com awarded me The Disability Award. You have to check out her site, here’s the original award post,  https://fightingwithfibro.com/2019/04/27/the-disability-award/ Her sunny personality welcomes you with every post, she’s informative, topics are fresh, up to date and she reviews products we might be interested in. She is very knowledgeable. Following her is a must. As part of my nomination, I choose other Disability Bloggers to give this award to. They are as follows: Wendy at  simplychronicallyill.wordpress.com Patricia at  https://patriciajgrace.wordpress.com Colly at https://dopaminequeen.com Alyssia at https://fightingmsdaily.com Mackenzie at lifewithanillness.com Robert at https://robertmgoldstien.com Gavin at https://sedge.com Nominees: Please answer the questions, choose your own nominees and develop your own set of questions. Stacey’s questions are so good I’m going with her’s. Display the award badge. What was the first sign of your illness? My chest and right clavicle starting hurting and would not go away for months. What is your worst symptom and how do you cope with it? Whatever it takes, pain meds, a nap, meditation, looking at the flower garden, put feet in the pool, letting them float. What one thing about you has changed as a result of your struggles? I understand people with all types of disabilities better. What words of advice or encouragement would you give to someone else suffering? Accept it, embrace your illness as part of your daily life and work on what relieves your pain. Name one good thing that has come out of having […]

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Chronic Illness

How Many Pills A Day?

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44 pills a day Most of the medications I take are for Mental Illness and Chronic Illnesses. I am blessed we have good insurance which covers most of the cost. There are two prescriptions that cost over $500 after coverage. I don’t like to take pills and can only take one at a time which can take 10 minutes to […]

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Bipolar Disorder

Medication Check List

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How often do you update your medication checklist with all of your doctors? I make a habit of taking an updated list to every appointment. It’s up to me to keep everyone informed. That doesn’t mean side effects or mishaps don’t happen. I fired my Lyme doctor because he prescribed medicine in a class I was already taking. In this case, drugs from that class don’t mix with another in that category. It made me Psychotic for a week, walking in circles in the house 24 hours a day, I thought I learned a new language and was with my tribe of Indians. It was a horrible experience. It was half of my responsibility, doctors dispense too many medications to know all the side effects. My habit is to go to FDA.gov and read the Prescribing Instructions from the manufacturer. I can read all the side effect data and know what to look out for. In this case, I had put the medication aside for a week because I was too sick to look up the information and too stubborn to ask my husband for help. I paid the price. We have to manage our medications along with the doctor, they only have 15 minutes at best and most of the time new prescriptions aren’t written till the end of an appointment. Read the information given by the pharmacy. The information will at least include the most common side effects […]

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Chronic Illness

HOLISTIC APPROACHES TO CHRONIC PAIN *U.S. Pain Foundation*

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March 4, 2019/ U.S. Pain Foundation By Deborah Ellis, ND, CTN If you’re like me, and millions of others, you’ve probably suffered with chronic pain for a year or longer. Chronic pain affects 50 million Americans, 20 million of whom have high-impact chronic pain. It has been linked to increased risk of major mental conditions including depression, anxiety, and post-traumatic stress disorder. Science understands a body in chronic pain continually sends stress signals to the brain, leading to a heightened perception of not only the pain itself but also the perceived level of threat. It’s a vicious cycle that’s hard to break or control. When a person is diagnosed with pain, the first line of treatment is typically pain medication. But while these medications may work for some people, in others, the side effects—ranging from nausea to heart complications—may outweigh the relief. For patients looking to explore a holistic pain management program, whether alone or in tandem with traditional medicine, there are a number of options to consider. Let’s review a few of the more common holistic strategies available today. Acupuncture Chiropractic Exercise Massage Stress-reduction techniques like mindfulness and meditation training Vitamin or herbal supplements Aloe vera ACUPUNCTURE Acupuncture, common in Chinese medicine, involves inserting thin, tiny needles into certain points of the body. Traditional Chinese practitioners believe acupuncture balances the flow of energy or life force — known as qi or chi. Western practitioners see it as a way to […]

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Chronic Illness

The Importance of Having a Fibro Family for Support-Please Join Our Fibro Family! — Guest Fighting With Fibro

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The past two weeks have been really exciting for me, with so many readers or other Bloggers reaching out, commenting and emailing. It’s been SO great!! When I started blogging, I really had one goal: to try to use my experience of living with multiple chronic illnesses to help others-I somehow had to create a […] via The Importance of Having a Fibro Family for Support-Please Join Our Fibro Family! — Fighting With Fibro

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Chronic Illness

Lyme Progress #8 Fibromyalgia

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    I’ve written 76 WordPress post on Chronic Lyme, rarely acknowledging the other Chronic Illnesses I have. When I started treatment for Lyme someone said to me, just wait you’ll get all types of other illnesses. I thought I was dying, having IV Therapy treatment seven days a week, Sunday bandage change, and do it all over again. I flew to D.C. […]

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Chronic Illness

22 Lesser Known Facts About Fibro — Fighting With Fibro

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Thank you for the information packed post. Reblogged from Fighting With Fibro. If you’re like me, you’re always trying to stay apprised of new information surrounding your illness(es). Sometimes, it seems like I never see anything new and oftentimes, it seems the data I read is just somehow recycled; one site to another. So I spent some time (okay, a lot of time) gathering facts that, maybe, […] via 22 Lesser Known Facts About Fibro — Fighting With Fibro

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Celebrate Life

Yo no….. Soy yo

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No soy  Lyme crónico Fibromialgia Demencia Neuropatía Agrofóbico Cierre de Centrado en la enfermedad Estancarse Culpable Desesperada Buscando simpatía Soy yo Una mujer Esposa Perro madre Hermana Determinado Honesto Cuidado de un fallo Amar Asustado Tener metas elevadas Vivir con síntomas Fuerte voluntad Mentalidad abierta Escritor Estudiante No es un jugador ¿Cuál te gusta?  Melinda

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Chronic Illness

5 Things I Wish I’d Known Before My Chronic Illness

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New York Times By Tessa Miller  Feburary 18, 2019   Finding out you have a chronic illness — one that will, by definition, never go away — changes things, both for you and those you love. Seven Thanksgivings ago, I got sick and I never got better. What I thought was food poisoning turned out to be Crohn’s disease, a form of inflammatory bowel disease (IBD) that doesn’t have a cure. It fools my immune system into attacking my digestive system, resulting in what I can only describe as the attempted birth of my intestines through my butthole. It’s a cruel and often debilitating disease. Since that first hospital stay, I’ve had colonoscopies, biopsies, CT scans, X-rays, blood and stool tests, enemas, suppositories, rectal foams, antiemetics, antidiarrheals, antivirals, antibiotics, anti-inflammatories, opiates, steroids, immunoglobulin, biologics and three fecal transplants (if you want to hear a story about my 9-year-old poop donor and a blender, find me on Twitter). My disease is managed now thanks to an expensive drug called infliximab, but the future is unpredictable. IBD works in patterns of flares and remissions, and little is known about what causes either. When I was diagnosed, I didn’t know how much my life would change. There’s no conversation about that foggy space between the common cold and terminal cancer, where illness won’t go away but won’t kill you, so none of us know what “chronic illness” means until we’re thrown into being sick […]

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Chronic Illness

Zechstein Magnesium Chloride Mother Earth’s 250 Million Year Old Healing Treasure

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Last week Fighting With Fibro  shared a cream that worked on her Fibromyalgia pain. It was a magnesium based product, being curious I had to understand the difference of the type she purchased. The magic word is Zechstein, many products claimed to relieve pain and a host of other problems but they didn’t have Zechstein included in ingredients. https://fightingwithfibro.com/2019/02/19/finally-something-that-actually-works-for-my-fibro-and-rls-pain/ I could not find the […]

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Chronic Illness

I Am Not…..I Am

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I Am Not  Chronic Lyme Fibromyalgia Dementia Neuropathy Agrophobic Shut-in Over-focused on illness Stagnate Guilty Hopeless Looking for sympathy I am A Women Wife Dog mother Sister Determined Honest Caring to a fault Loving Scared Have high goals Living with symptoms Strong willed Open minded Writer Student Not a player Which one do you like? 

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Chronic Illness

U.S. Pain Foundation Ambassador Network

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Last week I joined the U.S. Pain Foundation Ambassador Program. The work the organization does for people with chronic pain is hands-on and at a government level. There are endless opportunities for you to support the organization with the time you have available. I have to learn how to do screenshots on MAC OS quickly, I’m attending a Webinar on Thursday.  Melinda Dear Junior Ambassador, I would like to personally welcome you into the U.S. Pain family! By joining our Pain Ambassador Network, you are taking action and choosing to help us advocate on behalf of the pain community. Our goal is to support you and provide you with the tools needed to raise awareness. The U.S. Pain Foundation is a nonprofit organization created by people with pain for people with pain. We want the experiences you have as a junior ambassador to be full of fun and excitement. Our mission is to educate, connect, empower, and advocate for pain warriors as well as their families, caregivers, and friends; the hard work and dedication of ambassadors like you is what allows us to fulfill this mission. We greatly appreciate the time, energy, and passion that you have chosen to dedicate towards raising awareness! To thank you for your commitment as a volunteer, we will be sending you a starter package in the mail. We encourage you to use these resources to empower yourself. As a junior ambassador, we would also like […]

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Children

MANAGING FIBROMYALGIA IN CHILDREN

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Welcome to Remedy, a blog by U.S. Pain Foundation. Remedy aims to provide people with the support they need to thrive despite chronic pain. It features the information about promising treatments, tips and strategies for self-management, resources for coping with the emotional and social effects of pain, unique perspectives from patients, clinicians, and caregivers–and much more. To submit an article idea, email contact@uspainfoundation.org. Posted: January 14, 2019   By Brent Wells, DC, a chiropractor and founder of Better Health Chiropractic and Physical Rehab If your child feels tired and achy, you may not worry initially. After all, there’s nothing urgent about what seems to be mild, general discomfort. However, if your child is constantly in pain, exhausted, having trouble sleeping, and experiencing intense moods, he/she may have fibromyalgia. This condition is fairly common in adults, but parents and clinicians may overlook the possibility of juvenile primary fibromyalgia syndrome — that is, fibromyalgia in children. JUVENILE FIBROMYALGIA SYMPTOMS TO WATCH OUT FOR Fibromyalgia is a chronic condition characterized by pain and fatigue. According to experts, children will often describe this pain as “stiffness, tightness, tenderness, burning or aching.” This pain can last for months and is often accompanied by other symptoms that affect a child’s overall well-being, energy level, and emotional health, including: Tender spots on muscles Difficulty sleeping and fatigue Aches, including stomachaches and headaches Lack of focus or memory Anxiety and depression If your child is experiencing these symptoms, you should […]

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Chronic Illness

Fibro Friday: Hamster Wheel

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Repost I’ve struggled with Chronic Lyme, Fibromyalgia, and Dementia for six years, every week it’s a follow-up or test for the latest ailment. I’ve made the decision to step off the Doctor Hamster Wheel in 2019. I saw a Rheumatologist two months ago, the clueless PA told me there wasn’t Lyme in Texas. REALLY? The doctor named a few possible illnesses and took my blood. The doctor’s visit was a bust but the lab work revealed my Calcium is high. Which can cause serious complications? She suggested having my Parathyroid checked. WOW, something came out of the lab work, I have another ailment to deal with! I saw the Endocrinologist, it was straight forward. A blood test, a scan at the hospital and possible surgery. We scheduled the scan immediately since it was affecting my heart. I fell down the stairs and banged myself up a good one. I landed a perfect 10! NO, I can’t lean my head back for two forty-five minute sessions. The test was rescheduled. 2019 is starting like the other six years, with a heart test scheduled, a Parathyroid scan with possible surgery, and a test for Traumatic Brain Injury from the fall. There are a few days left in 2018, I want to know who I am, how have I changed in that time. I developed Agoraphobia, haven’t driven in six years and have only seen the inside of doctor’s offices. I took the first step […]

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Child Abuse

Road Blocks in Life

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We all hit road blocks in life, some lasting weeks, others years. To survive the beat down you have to remain focused on forward steps, even nano steps are moving forward. I was lucky, abuse, trauma and self-hatred started while very young. Growing up hearing how stupid I was convinced me it was true. I was abused, sexually abused and […]

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Chronic Illness

Round And Round, The Hamster Wheel

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      I’ve struggled with Chronic Lyme, Fibromyalgia and Dementia for six years, every week it’s a follow-up or test for the latest ailment. I’ve made the decision to step off the Doctor Hamster Wheel in 2019. I saw a Rheumatologist a two months ago, the clueless PA told me there wasn’t Lyme in Texas. REALLY? The doctor named a few possible illnesses and took my blood. The doctor’s visit was a bust but the lab work revealed my Calcium is high. Which can cause serious complications. She suggested to have my Parathyroid checked. WOW, something came out of the lab work, I have another ailment to deal with! I saw the Endocrinologist, it was straight forward. A blood test, a scan at the hospital and possible surgery. We scheduled the scan immediately since it was effecting my heart. I fell down the stairs and banged myself up a good one. I landed a perfect 10! NO, I can’t lean my head back for two forty-five minute sessions. The test was rescheduled. 2019 is starting like the other six years, with a heart test scheduled, Parathyroid scan with possible surgery, test for Traumatic Brain Injury from the fall. There are few days left in 2018, I want to know who I am, how have I changed in that time. I developed Agoraphobia, haven’t driven in six years and have only seen the inside of doctor’s offices. I took the first step […]

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Celebrate Life

My 2018 Mammogram News

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When you have a Chronic Illness that creates severe pain it’s easy to skip one more doctor appointment, I did. This week was my first mammogram in six years. Although it did feel like ANOTHER doctor appointment this week, I feel good about myself. A mammogram is for me, it can save my life and mark one item off my […]

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Chronic Illness

Lyme Progress #5 Trends

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ILADS has taken the bold step from staying under the radar to leading the way to better LYME treatment. Today many “expert” Lyme doctors are training Medical doctors to recognize Lyme, basic treatment with written treatment guidelines. You can download the Treatment Guidelines yourself, I look forward to reading.  In theory it sounds good for Lyme suffers looking for a diagnosis. […]

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Chronic Illness

ILADS Member Engages the WHO to Include Lyme Disease in Revision of Health Code

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The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee) is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes. In 2017, members of the Ad Hoc Committee met with Dainius Pūras, the United Nations (UN) […]

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Caregiver

Netflix Original Series “Afflicted” Looks Deep At Chronic Illnesses

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Netflix original series “Afflicted” season one has started and you can look at latest trailer at http://www.netflix.com/title/80188953 The Netflix promo grabbed me by the neck and said watch me. “Afflicted” is a show with the people who have baffling long-term chronic illnesses telling their story. Talking with medical professionals, most are clueless what is causing the illnesses. M  

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Chronic Illness

Ten Important Fibromyalgia Facts

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National Fibromyalgia Association 1. ALWAYS believe in yourself emotionally and physically.  No one can tell you what you are experiencing is not real!  FM is a chronic medical disorder just like diabetes, hypertension, & asthma.  While there are still gaps in our complete understanding of FM, the symptoms are real, & patients’ concerns are legitimate.2. NEVER feel guilt for your […]

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Chronic Illness

Lyme Progress #4 *Photos*

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Original post 5/23/2018 Reposted for The Fibromyalgia Directory.  It’s summertime, ticks and insects carrying tick born illnesses are worse than last year. Practice all precautions if out in tall grass, tall scrubs or trees. I’m dealing with in Dementia, Fibromyalgia, Neuropathy, Lyme Arthritis, Cognitive issues, PAIN, falling, PAIN and pain medicines. There are days you want to cry, scream, on […]

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Chronic Illness

Lyme Progress #1 Pain Management

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  You may have noticed the name change from Lyme Update to Lyme Progress. The reason for the change, it’s time to start looking forward, short-term and long-term. I still struggle with illnesses which Lyme left and have days can’t get out of bed. WINNING is looking forward. The chronically ill understand this mindset. After dismissing my Lyme Doctor in Washington, I came back to Texas determined to build a team of doctors who could manage the different aspects of my illness. The next post I will talk about the long list of doctors required, today I wanted to discuss my immediate complaint. PAIN, PAIN, PAIN! I made my General Practitioner the main doctor, he was my GP prior to Lyme but many years had passed. We didn’t know each other any longer and trust had to be earned on both sides. We have scheduled 30-minute appointments instead of normal 15 minutes, we have more time to talk. Talking is a big part of getting to know each other. I’ve had several appointments with him and last week we talked about PAIN. Being a bit detailed, I put the list below together to show the different types of pain. Pain is pain is pain is not the same pain. There are many types of pain and over time they can feel like one but are not. The information provided helped him see there were many areas of my health not being […]

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Caregiver

Lyme Update #20: *Moving Forward*

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I fired my Lyme Literate Doctor The last straw! My Lyme PA prescribed a medication which interacted with a psych medication. Making me Psychotic, pure bat crazy. Scared of myself. Walking in circles non-stop until exhausted. It took days for the medication to clear my system and bring me back to earth. It was life changing. I said horrible things […]

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Advocacy

Shop Amazon Smiles, Donate to Your Choice Cause

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Amazon donates to International Lyme and Associated Diseases Educational Foundation when you shop at AmazonSmile. Please bookmark the link http://smile.amazon.com/ch/51-0604603  so all your eligible shopping will benefit ILADEF. If you have any questions, please sign in to http://org.amazon.com and click on the Help tab to see our FAQ topics. Thank you for your participation in the AmazonSmile program! Thank You Melinda

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Advocacy

Lyme Update #19 *My Last Nerve*

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Am I healing from Chronic Lyme Diseases? Who knows? Lyme doesn’t have a cure, only times of remission. There’s no way to plan for lingering health problems you will get, will or won’t recover from. Symptoms may go away over time, stay same or get worse. There’s no definitive test to gauge how your major organs are affected unless the damage is severe. The symptoms I struggle with daily are pain, pain pain, lack of balance, some memory has returned looking like a Tommy Gun practice. There are days when I can remember for a few minutes instead of seconds. If you’ve read my post the past two years, you’ve seen the cognitive issues. I can’t recall the proper name of items, have no concept of time and don’t fully recognize inflection. After two years in bed, I started to relearn walking in mid March. Falling is a physical daily threat. As my body gets physically stronger there are years of doctor and dentist appointments to catch up on. Before Lyme I started to develop Agoraphobia which has manifested to extreme levels anxiety leaving the house. Every doctors appointment is a challenge. The Lyme doctor prescribed a drug in the same class as one I take for my mental illness. I became Psychotic, waiting a week to touch down in reality. While Psychotic I wanted to hurt people, I was ANGRY. The person I became was not me, yelling, screaming, […]

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Chronic Lyme Disease

Powassan Virus worse than Lyme Disease?

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I am walking after three years spent in bed, how could anything be worse than Lyme Disease. I’ve lost three years of my life screaming in pain, narcotics, nine months of twice a day IV Infusion Treatments. The conflict in my marriage is understandable but not erased. I can not stress enough how important Tick Borne illnesses are, they can kill. If you already have a compromised immune system, your starting behind the curve. I’ve talked to many at WordPress with Chronic Lyme, many of them spent 10-15 years before diagnosis. Think of the pain and isolation of our fellow Bloggers. People have said we don’t have ticks, for one Lyme and Powassan Disease is transmitted by many sources other than ticks, mosquitos, sand flies, are just a few culprits. Thick of it this way, in the wild animals of all types of animals die, many pest visit the buffet. Now imagine how many pest fly to a hump of dung! Many more than we know and the world is bigger than or neighborhood. The flying pest target is blood, they have to eat. They don’t discriminate on were to go for lunch. The ticks who carry Tick Borne illnesses are smaller than a pencil lead, try to find that while doing a tick check, you will not see them. Before Chronic Lyme I refused to use DEET, now I won’t step out of my house without. At least 20% […]

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Chronic Lyme Disease

Lyme Update 18 *Chronic Illness & Controlled Substances*

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The days get lonely, when your symptoms reach the disability stage. Times can get lonely, ask friend or create a circle of like-minded friends who you can talk honestly with.  Keep Learning. If you’re concerned about addiction, talk to Doctor as you decide the treatment best for you.One complete withdraw on Xanax and two days without Temazepam. This is a monthly struggle. The CDC is putting a tighter grip on Control  Substance management is critical if you suffer from lack of memory. Going thru withdraw in August and not clear how, I had to understand how this happened. I get anxiety when an addictive drug is running low. I’m addicted to are Xanax, Dexedrine, Tramadol, and Morphine Patches. The Xanax and Dexedrine are for mental illness the others are for Lyme Protocol. The ongoing frustration is with myself, CVS and my husband. It is difficult to take care of a Chronically Ill person. My husband has to work, do every task at home, grocery shopping, everything.  That’s a big understatement. I have severe dysfunction in memory & cognitive ability. CVS had new script for increased dosage of four a day, first refill my Doctor called increased to 3 daily, a week later he increased the dosage to 4X. If CVS would have filled each new increased dosage I could skipped the experience of 100% withdraw. Part of my Lyme Protocol is Temazepam, a restless leg medicine. If you can’t sleep you’re […]

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Chronic Lyme Disease

 Bumpy Road With Chronic Lyme Diseases  Keep Moving Forward 🙏

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I included the photo to show I’m very organized and life is getting ready for change. *The chatter are my thoughts, a Lyme Literate Doctor can consult and talk about options.*  Xx  M Living with Chronic Lyme Disease, requires tremendous faith, inner and physical strength. Please search to discover you’re core strength: it  strength may save your life. Have you […]

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Celebrate Life

Thank You For Love And Prayers

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Chronic Lyme has invaded my brain, emotions and bodies ability to move without tremendous pain. I’m blessed to have pain meds and others to provide comfort. Not being to walking is depressing. I wanted to thank you and Twitter buddies for your love, prayers and awesome videos sent my way. I love James Brown, his grove is infectious. “I Feel Good” video is my fake it till you make it  positive thinking. The second, well just to see his grove! The man can dance. Both made me smile and you make me smile brighter. Without a doubt better days are ahead. God has my path planned out. Xx Melinda

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Advocacy

He Named The Posts: Let’s Stop Calling It Mental Illness

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 In 11 years of Blogging, I can’t recall a time going flip out, full rant on anyone. Today changed everything. We are all due our opinion, we live in the great country of America. People have the same right to voice an opposing view. It’s important my friends and followers know what I will fight for and what my true passions are. Mental Health is on top of the list, I advocate, help anyone who ask, manage my own mental health on a daily basis. I returned home late last night from D.C. and pretty tired today, I could have read the post wrong. Here are a few comments by someone who knows nothing about mental illness. Xx  M *So why then are we still calling these very physical and real illnesses “mental illness”?* *So why when someone has an illness in their brain, do we call it a mental illness?*  My thoughts on post While I agree on some points, you are way off base speaking on mental illness. No longer saying someone has a mental illness? WOW!! Mental illness is a serious illness the same as cancer, losing a limb or going blind. First Cancer has no cure, you want to just say oh, there sick? Instead of calling someone an amputee, oh they lost their leg, this person sufferers from endless pain battling their brain, the good and the worst. When someone is in a dark depression […]

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Advocacy

ILADS Response To Centers of Medicare/Medicaid Services of Health & Human Services

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The International Lyme Disease Association (ILADS) http://ilads.org, knows Chronic Lyme Disease exists, requiring extensive treatment currently restricted by the Center of Disease Control. The letter is a proactive communication advocating for longer treatment options. Taken From ILADS letter to Centers for Medicare & Medicaid Services Department of Health and Human Services. RE: Proposed Rule concerning antibiotic stewardship in Hospitals, Critical Access Hospitals and Nursing Homes  Additionally, the proposed rule emphasizes measures to eliminate discrimination directed at certain groups. The ILADS comment pointed out that persons with Lyme disease and tick-borne infections constitute a large and growing class of individuals subjected to severe and unjust discrimination which requires recognition and correction. Specifically, although many individuals in this group of patients often require longer courses of antimicrobials than are commonly prescribed, many are denied appropriate care based on arbitrary protocols that do not consider the specifics of their case. While ILADS recognizes that there are differences of opinion in the literature, after a thorough review of the evidence regarding Borrelia burgdorferi, the agent of Lyme disease, ILADS concluded that here is substantial scientific support for persistent infection. For this reason, ILADS promotes the selective and judicious use of extended antimicrobial therapy in patients with Lyme disease rather than the arbitrarily proscribed treatment durations championed by others. http://www.ilads.org/ilads_news/2016/ilads-statement-on-cms-proposed-rule-concerning-antibiotic-stewardship/ To read the entire response, click on link above. You will see the organizations fundamental beliefs, commitment to improving treatment for Lyme and other tick […]

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Advocacy

I want all WP friends to join me for a large celebration, party hats, clowns, kazoos, dancing Queen

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I celebrate my 7th year blogging anniversary and turn 53 in four days. Neither occasion are important on their own. What make this year so special is I’m alive. So many of you prayed , sent well wishes yet never treated me different. I started my first blog to help grieve my granny’s death. Flash forward, I’m blessed learning other cultures around the world. Blogging with millions of people at WP there are opportunities to learn, share and clarify the misunderstood. The most important lesson learned is people are generally good. I’m free to write my thoughts, some will not agree, others will not. We need different perspectives to broaden our mind. Thank you for making every year a good one. I appreciate the kind thoughts, asking how I’m doing and treating me normal. I hope to see you in the years to come. Party On!!!!! Pass the milk please! Hugs Melinda

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Chronic Lyme Disease

Lyme: Falling Hazards for the Fearless.

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Growing up with four bothers, I was a fearless tomboy. At 12 years old I was crowned with braces. After a few pops in the mouth my football career was over. Good childhood memories. Chronic Lyme Diseases affects everyone different, my parasites settled  into my brain. The first sign was the lack of balance. Think about the walk taken after getting pulling over for intoxication. I could take 2-3 steps at most with eyes closed. I have continued to have balance and common sense my husband would say. The clouds mingled as a storm moved in.Vibrant orange, pinks and every shade of blue. While he walked the dogs, I stood on the hot tub taking photos. Hours after the rain, I noticed a large earthworm on the storm door. My mission was to save the earthworm. If I bend below the knees, I’m going down. I diligently dug a hole in the dirt with one knee holding me up.David came running outside just in time for a glorious Circus tryout.. I fell down two bricks stairs, grabbing a landscape light on the way down it stabs me in the stomach. Then a loud crack as my head hit a stone brick. I was stunned and wanted to cry. No time for crying, he is yelling to see if conscious while trying to maneuver me from under patio table. It was time for me to sit and find my legs and damage done […]

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Advocacy

Learning from Chronic Illness *Tid Bits, Falling and Learning To Fly*

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I dedicate this post to the chronically ill, newly diagnosed and their caregivers. You are the Survivors. It took three painful years to learn I had Chronic Lyme Disease. I’ve had bumps over the years, nothing like Lyme. I’m totally dependent on my husband. Every week he takes countless hours off work. There’s IV Therapy before and after work. Day to-day monitoring the catheter with weekly bandage changes. Out of state doctor appointments once a month, insure medicines are taken properly, on time and everything you can think of. I didn’t know what life would teach me. Boy have I learned and want to share with you. The ongoing guilt is a challenge for me.Guilt for not getting out of bed, doing laundry, on and on. I had no concept of how humiliating daily life can get. I march on. At 52, I wear Kotex for daily spills. The agony of not taking extra Kotex on long flight. I made a list to complete before treatment. HA! It’s hard to prepare for everything when an illness effects everyone different. The post is female oriented, I can’t speak for men. Use your imagination. Some suggestions will make you laugh and others grateful to know. Here are a few surprises. The list is task you may want to consider. Any Dental work Mammogram Gynecologist By wardrobe essentials, one size larger, possibly add another half-size or larger. Shoes become a nightmare, one day your sneakers fit, next day […]

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Chronic Lyme Disease

Avril Lavigne on Her Struggle with Lyme Disease

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The post is my opinion based on my own experience and talking to people with Lyme Disease.  The symptoms of Lyme Disease are the same as many chronic illnesses. The parasites move quickly, if not caught early, the more difficult to treat. Lyme is a serious illness, it moves to major organs which bring on worst symptoms. I have Chronic Lyme and two co-infections. The parasites have moved to my brain, causing cognition, balance, eyesight and pain is severe. Most days I’m in bed due to pain and trying to reducing inflammation. I’ve included an interview with  Lorraine Johnson, CEO of lymedisease.org. She discusses Lyme, CDC and how Lyme Diseases is a serious illness. The time to take precautions is now. Xx  M

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Chronic Lyme Disease

Dr. Jemsek “Speaks the Truth”About Lyme Disease

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Dr Jemsek is an Infectious Disease Doctor who played a pivotal role identifying AIDS in N. Carolina.You will hear him mention in the video. He is my hero and my Doctor. There are several treatment methods, each Doctor is different. I’m on antibiotic IV Therapy 5 days a week, Lactose Ringer when not on IV Therapy, close to 30 supplements, Morphine Patch, two horrible liquid Rx’s and close to 35-40 prescriptions. YouTube is an awesome source for Lyme information. Xx  M

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