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 […]
Looking For The Light is a proud member of the Chronic Illness Bloggers Network. I joined six months ago and want to remind others who may be interested in joining or utilizing the resources they have available. If you suffer from a Chronic Illness and want more information or to join, you can find us at http://www.chronicillnessbloggers.com.
I found out about this exciting group from a fragrance advertisement for Hope, Hope Sport, and Hope Night, all available at Bergdorf Goodman.com. All net profits support Hope For Depression Research Foundation. Learn more at HOPEFORDEPRESSION.ORG Please check out their site, it’s packed full of information and resources. Melinda Our Mission The mission of the Hope for Depression Research Foundation (HDRF) is to fund cutting-edge, scientific research into the origins, diagnosis, treatment and prevention of depression and its related mood and other emotional disorders – bipolar disorder, postpartum depression, post-traumatic stress syndrome, anxiety disorder and suicide. In 2010, HDRF launched its Depression Task Force (DTF) – an outstanding collaboration of seven leading scientists, at the frontiers of brain science, from different research institutions across the U.S. and Canada. These scientists have developed an unprecedented research plan that integrates the most advanced knowledge in genetics, epigenetics, molecular biology, electrophysiology, and brain imaging. To accelerate breakthrough research, they share ongoing results, in real time, at a centralized data bank, the HDRF Data Center. HDRF was founded in April 2006 by Audrey Gruss in memory of her mother, Hope, who suffered from clinical depression. Every dollar raised goes directly to research. Founder’s Message My mother Hope suffered from depression for most of her late adult life. My sisters, father and I witnessed decades of misdiagnosis, trials of medication, troublesome side effects and the psychic pain and life-sapping loss of energy that is a mark […]
By Diane Cleverly, PhD, Founder of Concierge Conversations DID YOU KNOW THAT BY 2020, THERE WILL BE A SHORTAGE OF ABOUT 46,000 PRIMARY CARE DOCTORS IN THE U.S.? Not only that, but Medicare and Medicaid reimbursements per patient have dropped. That means physicians are increasingly pressured to see more patients per day. What does this mean for you, the patient? For one thing, your doctor has basically taken a pay cut. So it’s more important than ever to walk into a doctor’s appointment prepared in order to help you connect with your doctor on a personal level. But we all know that pain interferes with communication. It may cause you to get less sleep, or take meds that make you a little foggy; both of these can affect cognition. Pain is subjective—it’s hard to talk about even in the best of circumstances. So how can you ensure that you and your doctor understand each other? Pain Intensity Scale Doctors will often ask you to describe your pain intensity on a scale of 1-10—with 1-3 being pain that doesn’t bother you much at all and 9-10 constituting an emergency. But people with chronic pain often downgrade their pain—in part, because you’re so used to dealing with it that it doesn’t register the same way it might for someone who’s just stubbed their toe. A good thing to remember when using the pain scale is that giving a range of numbers can […]
Dear pain warriors, You’ve probably heard of yoga before and thought to yourself “there’s no way I could do that!” But you may not realize that there is a style or type of yoga for every level and ability. Gentle yoga, for example, is perfect for individuals with chronic pain and disability. There are plenty of options and modifications–you can even participate sitting in a chair! We’re excited to offer you a chance to explore yoga from the comfort of your home on Tuesday, Jan. 21, at 1 pm EST during a free interactive class and live Q&A with Ryan Drozd, a yoga instructor and wellness expert. Drozd lives with chronic pain himself, so he’s well-versed in helping find movements that are right for you and your body. Register now >> We hope you can join us live, but if not, all of our webinars are recorded and posted within a few days on our website. If you have questions, email contact@uspainfoundation.org. If you have specific concerns about the safety of yoga for your health situation, please check in with your health care provider. Sincerely,Emily LemiskaDirector of CommunicationsU.S. Pain Foundation U.S. Pain Foundation contact@uspainfoundation.org | uspainfoundation.org 670 Newfield Street Suite B Middletown, CT 06457
You don’t have to be rich like Lady Gaga to reduce fibromyalgia pain! Here are twenty things everyone can do to make living with fibromyalgia less painful. 20 Things Lady Gaga and You Should do to Reduce Fibromyalgia Pain — The Disabled Diva’s Blog
Willow and Sage by Stampington Great for people who suffer from chronic pain. For an additional benefit add apple cider vinegar to water when running the bath. You Will Need 4 cups Epsom salt 1/2 cup sea salt (optional) 25-30 drops of essential oils 3/4 cup baking soda Large Bowl Airtight containers To Make Mix the Epsom salt, sea salt, essential oils, and baking soda in a large bowl. Transfer mixture to airtight containers, such as a small glass jar for gifting. You can use any desired scent in your bath salts, but first, make sure to research the type of scent of essential oil that you’ll be using to ensure it’s safe for the bath.
Willow and Sage by Stampington Great for people who suffer from chronic pain. For an additional benefit add apple cider vinegar to water when running the bath. You Will Need 4 cups Epsom salt 1/2 cup sea salt (optional) 25-30 drops of essential oils 3/4 cup baking soda Large Bowl Airtight containers To Make Mix the Epsom salt, sea salt, essential oils, and baking soda in a large bowl. Transfer mixture to airtight containers, such as a small glass jar for gifting. You can use any desired scent in your bath salts, but first, make sure to research the type of scent of essential oil that you’ll be using to ensure it’s safe for the bath.
Dear U.S. Pain Foundation advocates, We wanted to let you know about an opportunity to take action on a federal bill that would expand and coordinate scientific research of cannabidiol (CBD) or marijuana-derived products, allowing researchers to better understand their potential efficacy and safety. While medical cannabis is increasingly available in a number of states nationwide, too often, there is little clinical data available to help patients and health care providers make informed decisions about whether it would work well for their specific condition, or how much and what type to use. Introduced by Senators Dianne Feinstein, Chuck Grassley, and Brian Schatz, The Cannabidiol and Marihuana Research Expansion Act (S. 2032) would streamline the research process, eliminating the lengthy delays and roadblocks researchers face when trying to study medical marijuana and CBD-derived products. Why U.S. Pain supports S. 2032We believe people with chronic illness and pain should have access to all safe, effective treatments, including medical cannabis. Research is critical as it would lead to increased understanding about cannabis as a therapeutic option (including efficacy, safety, proper dosing, best delivery methods, etc.) and may lead to new, FDA-approved treatment options for people with pain. Now is the time to take action U.S. Pain has created two online campaigns for advocates on this issue because we’d like to accomplish two goals: 1. Have the Senate Committee on the Judiciary schedule a hearing on the bill2. Gain additional cosponsors of the bill Click here and see if your Senator sits on […]
Dear U.S. Pain volunteer advocates, We wanted to make you aware of an opportunity to submit public comments to the Food and Drug Administration (FDA). Specifically, the FDA would like the public’s views on two main issues: 1. What criteria the FDA should use to evaluate new opioids to treat pain2. What new incentives are needed to better support and encourage the development of new treatments for painOn Sept. 17 the FDA held a public hearing called “Standards for Future Opioid Analgesic Approvals and Incentives for New Therapeutics to Treat Pain and Addiction.” While the public hearing has passed, the FDA is accepting written comments until Nov. 18. How to submitWritten comments are to be submitted to the Division of Docket’s Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852. Electronic comments can be submitted by using the button below.All comments must be identified with the docket number FDA-2019-N-2514. Please keep in mind that all comments submitted to the docket are public.Why advocates should engageWe think it is important for people with pain to let FDA know your thoughts on these issues. A number of people and organizations at the hearing said that they thought no new opioids should be allowed on the market. What’s your opinion about this?People with pain need new optionsThere has long been a lack of new non-opioid medications approved for pain. We encourage you to tell FDA what impact pain has had on your life and how speeding up the development of new […]
When you first got your diagnosis of fibromyalgia, did you ever wish you had a guidebook to help you find your way through this ‘new On My Bookshelf: Mayo Clinic Guide to Fibromyalgia — Reclaiming HOPE
October 16, 2019/ U.S. Pain Foundation/ 0 Comments October 11, 2019 Centers for Medicare & Medicaid Services (CMS) Comments on the Request for Information (RFI) on the Development of a CMS Action Plan to Prevent Opioid Addiction and Enhance Access to Medication-Assisted Treatment The U.S. Pain Foundation is pleased to respond to CMS’s request for information to inform the development of a CMS Action plan to prevent opioid addiction and improve the treatment of acute and chronic pain. The U.S. Pain Foundation is the largest 501 (c) (3) organization for people who live with chronic pain from a myriad of diseases, conditions and serious injuries. Our mission is to connect, support, educate and advocate for those living with chronic pain, as well as their caregivers and healthcare providers. Chronic pain is an enormous public health problem. The CDC and NIH have reported that 50 million Americans live with chronic pain and 19.6 million live with high-impact chronic pain that interferes with their ability to 1 There are currently very few highly effective treatments for many pain conditions. Managing pain is a matter of finding the right combination of treatments that allows pain sufferers to function and have some quality of life. We believe people with chronic pain should have access to a wide range of therapies and treatments because pain is very individual – what helps one person living with pain will not necessarily help another.Most people living with chronic pain spend […]
October 31, 2019/ U.S. Pain Foundation/ 0 Comments Interim CEO Nicole Hemmenway was one of three keynote speakers at the closing session of the American Massage Therapy Association (AMTA) national convention last weekend in Indianapolis, IN. In her talk, “Massage for Chronic Pain: What our community wants you to know,” Hemmenway shared her personal journey with complex regional pain syndrome and why she’s dedicated herself to helping others with pain through the U.S. Pain Foundation. She gave attendees a glimpse into the programs and services U.S. Pain offers, and provided insight into the scope of the chronic pain health crisis in America. The emphasis of Hemmenway’s remarks was on the barriers to multidisciplinary care, particularly massage, and how massage therapists can best help people with pain. “It truly was a privilege to be invited by the AMTA to speak at their annual convention,” Hemmenway says. “There is a greater need, maybe now more than ever, for affordable access to multidisciplinary care, such as massage therapy. I was so impressed with the therapists I spoke to who are genuinely invested in patient’s overall wellness. But like the pain community, they also feel discouraged by the lack of access. That is why it is so important for us to use our voices to fight for better coverage of options like massage.” Hemmenway shared feedback from the pain community about what they wanted massage therapists to know, including: People with pain have bodies that are […]
Dear pain warriors,Each November, U.S. Pain Foundation organizes a month-long educational campaign for the pain community. Recognizing that art and writing can help kids and adults cope with and/or express chronic pain and its effects on their lives, this year’s KNOWvember campaign will focus on creativity.During the month, titled “Art through Pain: How Creativity Helps Us Cope,” U.S. Pain will be:hosting three virtual events, soliciting visual art submissions to showcase at a later date,and highlighting information about art and pain on social media (#ArtThroughPain).If you’d like to submit your artwork, you have the option of sharing it with us privately or allowing us to use it in a future project (such as in a blog post on Remedy or an INvisible Project magazine) through the link below. Submit your artwork >>
Fibromyalgia is a condition that consists of widespread muscle pain, cognitive failures and fatigue. Because there is no standard blood test or other medical test to identify Fibro, doctors rely on Patient stories and history to make a determination, along with using the “tender point” test. When you have Fibromyalgia, there are particular tender points […] 7 Conditions That Can Mimic Fibromyalgia (And Getting The Right Diagnosis) — There Is Always Hope
Keep speaking out.My personal path into patient advocacy began with speaking at conferences about my struggle with complex regional pain syndrome, and, then, writing a book about it. But I know first-hand that speaking up isn’t easy–it can leave you feeling vulnerable and exposed, and it requires your already-limited energy and time. That’s why I’m so grateful to each pain warrior […]
Chronic pain – A complex issue that affects everyone differently. The one thing we all have in common? Chronic pain is a chronic pain in the ass to deal with! Chronic Pain : A Chronic Problem Pain can affect you physically, socially and psychologically, impacting everything from sleep and mental wellbeing, to work and relationships. […] Chronic Pain Awareness Month : September 2019 — Invisibly Me
WEBMD HEALTH NEWS By Jennifer Clopton Sept. 5, 2019 — Nevada mom Ashley says she became worried when her 10-year-old son, Jordon, started to restrict his snacks and excessively work out. But even as he lost weight, she and her husband didn’t realize the extent or true cause of the problem. Like all the parents quoted in this story, she asked that her last name not be used to protect her son’s privacy. Ashley wasn’t the only one who failed to identify what was happening. Her husband thought their son was having a growth spurt. A nutritionist called it “a phase.” The emergency room doctor she sought out when she didn’t know where else to turn attributed his weight loss to being active and involved in sports. The ER doctor also said they needed to follow up with a pediatric oncologist to make sure Jordan didn’t have cancer. “He basically told my son to add smoothies to his diet, and he jumped to cancer as a possibility,” Ashley says. Ashley had to wait 3 weeks before a pediatric oncologist could see her son. But thankfully, he knew exactly what was going on. “He pulled my husband and I aside and said, ‘Your son doesn’t have cancer. He has an eating disorder.’” “I look back at pictures now and think, how did we miss it? But we were around him all the time, and we saw him eating. We didn’t realize how much he was exercising though, and we […]
National Pain Report Posted on August 26, 2019 by Denise Hedley There is something about being chronically ill that makes us need to know everything there is to know about what is wrong with our bodies. This, of course, gets us in trouble on occasion when the doctors take our knowledge of medical terminology and turn it around as proof that we are faking it. I guess they didn’t get the memo. Chronic pain does not mean chronic stupidity. We actually care. We are actively participating in our own care teams. We have gained a frightening amount of medical knowledge over the years just trying to understand our conditions. We know our bodies better than most. We deal with more in a short period of time, say during a flare, than many people deal within their lifetime. That is in addition to what we deal with when we’re not in a flare. For us, the pain never really goes away. Our experience adds to the knowledge we have accumulated. It enables us to cope with what is going on. It enables us to forge ahead through the abyss of opioid lies and laws that do little more than minimize our very existence. Denise Hedley I think we need to stand up and loudly use that knowledge because it is backed by our experience. Those who have been responsible for the faux crisis have limited knowledge. They only know the scientific […]
Dear pain warriors, At U.S. Pain Foundation, we deeply believe in the power of sharing patient stories. Talking about our experiences with pain helps us to educate others, to create change, and to offer hope. That’s why our theme for Pain Awareness Month 2019, which begins Sunday, is #LetsTalkAboutPain.I first got involved in patient advocacy by writing a book about my experiences with complex regional pain syndrome. It enabled me to process my personal journey, take control of my story, and help create awareness for those like me. I hope speaking up about pain this September can do the same for you. This year, we have dozens of opportunities for you to help bring pain to the forefront of public conversations, ranging from our daily storyathon to social media giveaways to weekly events.All of these activities are presented in collaboration with our generous sponsor, Thrive Tape, the creator of an innovative, far-infrared kinesiology tape for all types of musculoskeletal conditions and injuries. (We encourage you to check them out! Use the code USPAIN for a discount.)How you can participateWe have something for everyone! Most activities are online, which means you can take part from the comfort of your home. Storyathon. Each day in September, U.S. Pain will be sharing a video story of a real person living with pain. These individuals–from all walks of life–bravely submitted their personal stories in August to help create awareness. To watch the videos, follow us on Facebook and Twitter. Missed the video storyathon deadline? Share […]
How many participants in the MyLymeData patient registry ever had a Lyme-related rash? (34%) How many initially presented with flu-like symptoms? (64%) How many were misdiagnosed with a psychiatric illness? (54%) These are some of the details you can learn in the MyLymeData 2019 Chart Book. This report is a compilation of our research results based on more than 2.5 […]
The sheet touches the underside of my arm and it burns. My sandals touch a spot on my foot that shoots pain up my leg. Sleeping is restless since shoulder and hip joints have painful arthritis. Motivation for anything is non existent. Sleeping requires narcotics, I hate the way they make me feel the next day. Walking the day […]
July 23, 2019/ U.S. Pain Foundation Too often, due to broad misconceptions and a lack of understanding about pain, pain warriors are afraid or ashamed to speak up about their stories. But the only way we can create change is if we start talking–to loved ones, coworkers, neighbors, clinicians, and even policymakers. That’s why our theme for Pain Awareness Month 2019, which begins September 1, is “Let’s Talk about Pain.” We’ll be hosting numerous events, campaigns, and activities that center around this idea. In order to truly get the word out, though, we need your help. HOW YOU CAN PARTICIPATE Below, please find a short list of ways you can participate right now in Pain Awareness Month. Many of these campaigns require involvement before September, so don’t wait! Submit your video story! Share a 3-5 minute video about your pain journey with us by August 9. All participants will receive a limited-edition Pain Awareness Month bracelet and our new Living with Pain educational booklet–AND be entered to win a prize pack. A handful of individuals will be selected to have their videos featured online throughout September! Get started here. Questions? Email us. Request a proclamation. Ceremonial proclamations from state and local representatives help bring awareness to pain at the government level. To get started, fill out this form by August 9. We have easy-to-use templates and tips to make the process easy and fun. Please note that proclamations can take time, so put in your request now! For questions, email us. […]
Whatever this obstacle is, it started 18 months ago, there wasn’t a moment I can pin this inability on. Inability is the right word, I’m not afraid to leave the house, I’ve driven a few times in the past year, I know how to drive and live in the same town. Yet I have my husband take me to all […]
I have Thyroid & Parathyroid surgery tomorrow and will be out of pocket for a couple of weeks. Ok, it will be hard to stay completely away but considering moving my neck in any direction will hurt, I won’t spend much time on WordPress. Please don’t stop the comments, I’ll take all the encouragement I can get. There are tumors […]
National Migraine Institute Posted on August 27, 2018 by Staff Researchers have found a potential mechanism for migraine that may explain why women get more migraines than men. The study, in Frontiers in Molecular Biosciences, suggests that sex hormones affect cells around the trigeminal nerve and connected blood vessels in the head. They found that estrogens, which are at their highest levels in women of reproductive age, are particularly important for sensitizing these cells to migraine triggers. “We can observe significant differences in our experimental migraine model between males and females and are trying to understand the molecular correlates responsible for these differences,” explains Professor Antonio Ferrer-Montiel from the Universitas Miguel Hernández, Spain. “Although this is a complex process, we believe that modulation of the trigeminovascular system by sex hormones plays an important role that has not been properly addressed.” Ferrer-Montiel and his team reviewed decades of literature on sex hormones, migraine sensitivity and cells’ responses to migraine triggers to identify the role of specific hormones. Some (like testosterone) seem to protect against migraines, while others (like prolactin) appear to make migraines worse. They do this by making the cells’ ion channels, which control the cells’ reactions to outside stimuli, more or less vulnerable to migraine triggers. Some hormones need much more research to determine their role. Estrogen, however, stands out as a key candidate for understanding migraine occurrence. It was first identified as a factor by the greater prevalence of migraine in menstruating […]
Most people don’t think of Mental Illness when discussing Chronic Pain. Mental Illness can be physically debilitating with many spending large amounts of time in bed. For someone like me who is challenged by both, daily life can be difficult. Today I’m in bed juggling my laptop on one knee trying to avoid the pain screaming on the left […]
As Ambassador for U.S. Pain Foundation I want to share the latest news on a meeting offered by U.S. Pain Foundation and Coilition for Headache and Migranes Patients. Melinda Sandor Ambassador-Texas U.S. Pain Foundation. Dear pain warriors, Those with chronic pain, including migraine and headache disorders, can have an especially tough time finding a doctor they click with. Have you ever wanted to find a way to better communicate with your doctor, get the most out of your visits, and maximize your treatment plan?If yes, please join us this Thursday, June 13, at 7 pm ESTfor an intimate conversation between neurologist and headache specialist Abby Chua, DO, and patient advocate Katie Golden. Dr. Chua and Katie will discuss what patients and doctors can learn from one another, and offer tips for interacting.Dr. Chua is a headache specialist at Hartford HealthCare Headache Center in Connecticut. She also is program director of their Headache and Facial Pain Fellowship Program, one of the few such programs in the country. Dr. Chua brings a special level of compassion to her practice as a person living with vestibular migraine, and advocates tirelessly on behalf of patients. Katie lives with chronic migraine disease, and has emerged as a leading voice for the patient community. She is the Migraine Advocacy Liaison for U.S. Pain Foundation and a member of the steering committee for CHAMP. She was the recipient of the Impact Award 2017 for the Association of Migraine Disorders and writes […]
June 3, 2019 By 23andMe under 23andMe Research, Education By Eloycsia Ratliff, MPH, 23andMe Medical Education Project Manager We know that diet and exercise play an important role in a person’s likelihood of developing type 2 diabetes, but what role does genetics play? That’s a question 23andMe researchers have been investigating, and at a meeting of the American Diabetes Associations (ADA) Annual Conference on June […]
As an Ambassador for the U.S. Pain Foundation I invite you to read the latest issue of Invisible Project. Melinda Sandor Ambassador-Texas U.S. Pain Foundation June 3, 2019/ U.S. Pain Foundation/ 0 Comments In time for Migraine & Headache Awareness Month, U.S. Pain Foundation has released its third edition of the INvisible Project focusing on headache and migraine diseases. The publication depicts the reality of life with pain, and why people living with headaches diseases need and deserve more help, treatment options, and research. It also serves as an inspiration to those living with the disease, offering hope and resources. The magazine features profiles of 10 inspiring individuals, including: Danielle Byron Henry: On March 24, 1999, at age 17, Danielle took her own life due to migraine disease; a life lost to unbearable pain from a serious neurological condition. In 2019, her family observed the 20th anniversary of her passing. The family honors Danielle’s life and legacy through the Danielle Byron Henry Migraine Foundation, which was formed in 2016. The foundation provides support and care for all those with migraine disease. Tom Sayen: Since the age of 17, Tom has lived with blinding headache pain. It took 48 years, and endless nights of unbearable pain, for him to find the correct diagnosis of cluster headaches. He has become an advocate, ensuring that all individuals living with cluster headache are provided with the necessary education and treatment. Melissa Carlson Kelly: Melissa serves as […]
Ketamine is an anesthesia used since the 1960s and has since been proven to work for Chronic Pain and Mental Illness. My pain levels have been through the roof and walking the last 15 days has been difficult. I made the decision to try something radically different. I had my first Ketamine treatment was yesterday. I read about the LSD […]
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 […]
A medida que las temperaturas se calientan, las posibilidades de encontrar garrapatas aumentan. Hace poco una PA dijo que no tenemos a Lyme en Texas, ¿qué? Sí, las enfermedades aburridas de Lyme o garrapatas están en todos los estados. Algunos estados tienen un mayor porcentaje de casos, pero no se engañe, las enfermedades transmitidas por garrapatas se encuentran en todos […]
U.S. Pain Foundation Ellen Lenox Smith es codirectora de Cannabis medicinal para el dolor de los EE. UU. Y miembro de la Junta del dolor de los EE. UU. Ella vive con dos enfermedades raras: el síndrome de Ehlers-Danlos y la sarcoidosis. Después de años de luchar por encontrar alivio para el dolor sin efectos secundarios ni reacciones adversas, descubrió […]
As the temperatures warm the chances of encountering ticks increase. I had a PA recently say we don’t have Lyme is Texas, what? Yes, Lyme or tick boring illnesses are in every state. Some states have a higher percentage of cases but dot fool yourself, tick-borne illnesses are in every state in the United States. There are now 30 strains of […]
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 […]
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 […]
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 […]
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 […]
in pain in pain frustrated distracted self-conscious feeling fat wanting to sleep wanting a different me feeling lazy wanting sunshine wanting a new day
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
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 […]
Anxiety is perfectly healthy emotion that we encounter in our lives. You know the time you were taking your exams or dare I say it…driving test (it was anxiety that helped me to take the examiner to someone else’s car…but that’s a whole different story). 6 Top Tips To Alleviate Anxiety — Fibroflair.com
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 […]
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 […]
I shaved my head several weeks ago because bathing is to painful without having to wash and dry my hair. Fibromyalgia takes everything out of you on a daily basis even on a good day. On a bad day you don’t want to move. This isn’t the first time I’ve shaved my hair in the past seven years, it makes […]
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 […]
‘Me Time’ In the Holiday The Easter holiday is upon us…umm…who called it a holiday? Ok so there is no morning school rush which, I have to admit, is great but…there is very little peace and quiet at home. via ‘Me Time’ In The Holiday — Fibroflair.com
Tuve que aceptar la pérdida del control diario una vez diagnosticado con fibromialgia. Me voy a la cama con planes para el día siguiente, cuando llega la mañana, no puedo levantarme de la cama. En el pasado, me castigaba, sentía vergüenza y rabia. Una ducha dura una hora, es doloroso y agotador. En su lugar, utilizo toallitas de limpieza […]
When dealing with severe pain it’s easy to forget you have a mental illness that requires as much attention, if not more. It’s critical to have the right doctors, I see a Pain Management Doctor for my Chronic Illnesses, a Psychiatrist for my Mental Health and a General Practitioner for everything else. The doctors are not trained to do […]
Without even realising, we could be eating our way into fibro fog. via Is Your Diet Contributing To Fibro Fog? — Fibroflair.com
I had to accept the loss of everyday control once diagnosed with Fibromyalgia. I go to bed with plans for the next day, when the morning rolls around, I can’t get out of bed. In the past, I would beat myself up, feel shame and anger. A shower takes an hour, it’s painful and exhausting. Instead, I use hospital approved cleansing wipes […]
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
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. […]
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
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
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 […]
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 […]
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?
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 […]
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 […]
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 […]
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 […]
To say that kids can be cruel is an understatement, and the impact is has on the recipient can be painfully damaging to say the least. Having a stoma can be hard for anyone. I can only imagine what it’s like for a child. 10 year old Steven Bridges in Kentucky hanged himself. He went […] via Bullying, Stomas & Stigma — Invisibly Me
depressed emotional eating isolated numb staring at screen fat disgusted incapable frozen lost empty unmotivated sufficating why
Lyme is one of many Autoimmune Diseases that share the same or similar symptoms. It’s one reason doctor’s tend to treat each symptom until they realize it’s one illness and give a referral or you’ve given up on them. My journey started with pain in the middle of my chest, Costochondritis, my General Practitioner said, it will heal in […]
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 […]
By Susan Scutti, CNN 17 hours ago The Asian longhorned tick most likely began invading the United States years ago. Now found in nine states, the tick may soon occupy a large swath of eastern North America as well as coastal regions of the Pacific Northwest, according to research published Thursday in the Journal of Medical Entomology. “This tick can […]
Originally posted on Coolncreative:
This week (15-21st October) is Invisible Disabilities Awareness Week, a week dedicated to raising awareness to all chronic conditions which you cannot see. In fact 96% of people who live with a chronic illness live with an illness which you cannot see. So with this in mind you may not know that someone you know is…
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 […]
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. […]
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) […]
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
If your doctor does not listen to your physical complaints change doctors ASAP. This holds true for anyone. Lyme is real, Chronic Lyme does exist and there is no cure. Some will argue using supplements will cure Lyme. Do your homework if this sounds like the healthy treatment. Many Lyme patients take supplements, conventional and non-conventional medicine. I took more […]
But Here’s What You Should Really Worry About The New York Times reported yesterday that a new-to-the-United-States tick species has been identified in seven states in recent months, after an infestation was first discovered last summer in New Jersey. The tick is native to Asia, where it is known to carry a dangerous virus that kills 15% of the people […]
WordPress sent a nice badge informing me Looking for the Light Blog was celebrating its ninth anniversary. I can’t find the badge and will improvise. Looking for the Light became an outlet to share past trauma. The shame, guilt, self-hatred, my father’s suicide, each beating and bruise remembered. During this time I met many people going thru trauma and pain. […]
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 […]
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 […]
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 […]
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 […]
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
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, […]
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% […]
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 […]
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 […]
I’m sending you health and happiness. Get lost in music, get your feet moving and GET GROVE ON. Wild Horses remind me of unpleasant times in life, yet tied to my soul. I’m a Survivor, it’s nice to remember. Wild Horses reminds me how far I’ve come. XxM
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
@SeeYouClearly Forging through another day! Life is good! 👍 pic.twitter.com/Kab7zdpYLV — Nobody's Hero (@BoldAsLove65) October 12, 2016
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 […]
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 […]
Let’s Talk Lyme Last update, we talked about IV Therapy as a treatment option for Chronic Lyme Disease. IV Therapy is one type of medicine to help you heal. I also take a close to 20 prescriptions and who knows how many supplements. Insurance doesn’t pay for the IV Therapy which is quite common. To ask a question thru the […]
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
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 […]
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 […]
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
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
Money can create stress in the strongest marriages. With Chronic Lyme the topic of money was an issue in our house. How does $39,000 for 7-9 months of treatment impact retirement plans? I considered not spending the money. That was a heated issue, I saw our retirement go down the drain, it wasn’t a good feeling. The timeframe to wellness […]
Thank you for all the hugs and prayers, my heart overflows with sunshine. There is no question I will survive, a cure will come sooner than later. Xx M
I hope to have a Lyme Update post with information on the cost of treatment. Thank you for stopping by today. I am happy to answer any questions. Xx M
