No man has a good enough memory to be a successful liar.
Abraham Lincoln
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To succeed in life, you need three things: a wishbone, a backbone and a funny bone.
Reba McEntire
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If you could kick the person in the pants responsible for most of your trouble, you wouldn’t sit for a month.
Theodore Roosevelt
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1914
Since 1905, Anna Jarvis has lobbied various officials to adopt a holiday honoring mothers, and she’s succeeded in convincing many US states to take part. Today, President Woodrow Wilson proclaims the second Sunday in May to be Mother’s Day and a US federal holiday.
1958
A tale of manic obsession and cruel deception, Alfred Hitchcock’s latest thriller has its world premiere. ‘Vertigo‘ will disappoint at the box office and receive lukewarm reviews, but will grow in stature to be considered one of history’s greatest films.
1671
Following an elaborate ruse played on the Tower of London’s custodian, Captain Thomas Blood and his henchmen attempt to steal the Crown Jewels. The Sceptre is sawn in two, the Crown flattened, and the Sovereign’s Orb hidden down a pair of trousers. Blood will be captured, but pardoned by King Charles II.
1960
The Food and Drug Administration (FDA) approves the world’s first commercially produced birth-control bill–Enovid-10, made by the G.D. Searle Company of Chicago, Illinois.
1950
On this day in 1950, Lafayette Ronald Hubbard (1911-1986) publishes Dianetics: The Modern Science of Mental Health. With this book, Hubbard introduced a branch of self-help psychology called Dianetics, which quickly caught fire and, over time, morphed into a belief system called …read more
BIRTHDAYS
Billy Joel 1949
Candice Bergen 1949
Prince Fielder 1984
Kathryn Kulman 1907
I hope you are having a great Wednesday, the tunes will get you dancing. M
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 el cannabis medicinal. Ellen, una maestra escolar jubilada, ahora es una reconocida defensora de pacientes y trabaja incansablemente para fomentar el acceso seguro y justo a todas las opciones de tratamiento, especialmente el cannabis medicinal. Ha hablado en numerosas conferencias sobre el acceso al cannabis y ha aparecido ampliamente en los medios de comunicación sobre el tema. También es autora de dos libros: ¡Me duele como el infierno !: Vivo con dolor, tengo una buena vida de todos modos y mi vida como un perro de servicio. A continuación, aclara los mitos comunes que rodean el cannabis medicinal para el dolor. MITO # 1 : TODAS LAS PERSONAS QUE UTILIZAN CANNABIS DEBEN ESTAR “APILADAS” O “ALTAS”. Verdad: esto solo sucede si usa demasiada medicación. Las personas que viven con dolor obtienen alivio del dolor; Las personas que lo usan socialmente y sin dolor, se drogan! Además, el cannabis medicinal está compuesto por dos componentes: el THC, que causa los efectos mentales asociados con la sensación de estar alto, y el CBD, que produce efectos corporales. Varias variedades de cannabis tienen diferentes proporciones de THC y CBD, lo que significa que no todas las variedades crean tanto sentimiento de “alto”. MITO # 2: TODOS LOS QUE UTILIZAN LAS MISMAS EXPERIENCIAS DE RAYA, EL MISMO RESULTADO DE USARLO. Verdad: Cada cuerpo Puede tener una reacción diferente a cada cepa, incluso si tiene la misma afección médica. Se necesita paciencia. No se rinda en su primer intento, cada persona debe encontrar la tensión que mejor funcione para sus cuerpos. MITO Nº 3: TODOS LOS TIPOS DE CANNABIS TIENEN MUCHO THC EN ELLOS Y ME HACEN QUE SE SIENTA. Cepas de las plantas para elegir. Algunos tienen una proporción más alta de THC que otros y otros tienen un THC mucho más bajo y un CBD más alto. ¡Tómese tiempo para hacer su investigación antes de decidir qué tipo de cepa podría ser mejor para usted! Los profesionales de su dispensario médico local también son un buen recurso. MITO Nº 4: NO HAY RIESGOS AL USAR CANNABIS MÉDICO. Verdad: si bien el cannabis medicinal es considerado como mucho más seguro que muchos medicamentos, conlleva riesgos. Tenga especial cuidado cuando ingiera cannabis, ya que no se activará de inmediato y puede tardar hasta horas antes de que sienta el efecto. Entonces, si le das un bocado a esa galleta y crees que no sientes nada, no te comas el resto o te arriesgas a ingerir demasiado y ser muy alto, lo que puede causar una mala reacción, como la ansiedad. MITO Nº 5: CUANDO INGESTIGO CANNABIS , DEJARÁ MI SISTEMA RÁPIDAMENTE. Verdad: ingerir su medicamento significa que no solo demora más en activarse sino que también demora más antes de que salga de su sistema. Esta es una buena razón para tomarlo en pequeñas dosis para llegar a la dosis correcta para aliviar el dolor y no sentirse elevado. Si tomas demasiado, no te asustes. Se desgastará. pero puede tardar horas. MITO # 6: EL USO DE CANNABIS MÉDICO SOLO ME HACERÁ CANSAR. Verdad: Existen dos categorías principales de variedades de cannabis medicinal. Las cepas índicas tienen mayor CBD y menores recuentos de THC. Pueden ayudar con el aumento de la relajación mental y muscular; disminución de las náuseas y dolor agudo; y aumento del apetito y dopamina. Indica es típicamente preferido para uso nocturno. Mientras tanto, las cepas de sativa tienen un CDB más bajo y mayores recuentos de THC. Pueden ayudar con la ansiedad y la depresión; El dolor crónico, el aumento de concentración y la serotonina, usualmente se prefiere la Sativa para el uso durante el día. MITO Nº 7: TENGO QUE FUMAR CANNABIS MÉDICO SI LO HAGO PARA EL DOLOR. Verdad: Muchos no fuman cannabis para su medicamento. Puede, por ejemplo, elegir vaporizar, tomar pastillas, tinturas, tópicos, parches, aceites, comestibles e incluso usar bebidas. MITO # 8: MI MÉDICO ME ESCRIBIRÁ UNA RECETA PARA USAR CANNABIS MÉDICO. Verdad: en la mayoría de los estados, un médico necesitaría, en la mayoría de los estados, firmar un formulario de identificación y confirmación de que usted tiene una condición elegible, no una receta. Por lo general, usted usaría esta documentación para solicitar una tarjeta de cannabis medicinal de su estado. MITO Nº 9: NO IMPORTA A QUÉ ESTADO VIAJE, TODAS LAS LEYES SON IGUALES PARA EL USO MÉDICO DE CANNABIS. Verdad: cada estado tiene actualmente sus propias leyes. Algunos solo permiten el CBD de la planta de cáñamo, tres sin ninguna ley, y el resto con algún tipo de programa de cannabis medicinal establecido. Edúquese sobre las leyes específicas de su estado y sea cauteloso al viajar entre estados. MITO # 10: NECESITARÉ IR A LA FARMACIA Y ORDENAR MIS CANNABIS MÉDICA. Verdad: en algunos estados, se le permite crecer por su cuenta o tener un cuidador crece para ti Para otros, usted va al dispensario para comprar su medicamento. MITO Nº 11: TENGO MI CANNABIS MÉDICO CUBIERTO POR EL SEGURO. Verdad: solo el país de Alemania cubre actualmente el costo del cannabis. Para el resto de nosotros, no está cubierto, todavía. Solo una vez que el gobierno federal obtenga el cannabis fuera de la Lista I y todos los estados permitan un programa de cannabis medicinal, será posible la cobertura del seguro para cannabis medicinal. MITO # 12: YO SOY
Sauce y sabio por Stampington
Necesitará alrededor de 14 almohadillas de algodón2 TB. bruja hazel1 TB. aloe vera gel1 TSP. aceite de almendras dulces 1/4 TSP. Jabón de castilla Jarra de 4 oz con almohadillas faciales de algodón con tapa 14 Para hacer Agregue los ingredientes a una jarra de 4 onzas. Agitar suavemente el frasco para combinar los ingredientes. Agregue las almohadillas faciales de algodón al frasco, presionando las almohadillas hacia abajo en la liguid. Las almohadillas absorberán la mayor parte (o todo) del líquido. Asegure la tapa del frasco y guárdela en la teperuture de la habitación. Para usar Quite la almohadilla facial humedecida de la jarra y limpie su cara con ambos lados de la almohadilla para quitar el maquillaje. Lávese la cara con un limpiador facial después de usar las toallitas. Dado que la solución solo contiene 14 almohadillas faciales, necesitará hacer una nueva solución cada dos semanas.
RAINN
“I’ve been told my entire life that it was impossible for this kind of thing to happen to me.”
Johnathon Cassidy was sexually assaulted by a stranger he met while at a local bar. The perpetrator put a date-rape drug in Johnathon’s drink, sexually assaulted him in a car, stole his personal belongings, and left him unconscious at a bus stop.
“When I was raped I was 6’4” and 220 lbs. I truly believed that I could go anywhere I wanted and no one would bother me—I’m part Samoan, I’m hefty, I wear cowboy boots that make me even taller—I was the defender. Everyone always said ‘Go with Johnny, you’ll be safe with him.’ I’ve been told my entire life that it was impossible for this kind of thing to happen to me.”
A week after the assault, Johnathon told his best friend at the time what had happened. He reacted in an unsupportive way, making it seem like the assault was an inconvenience because it happened at their favorite bar. He told Johnathon that he wanted to go back to the bar and pressured him into returning. “I was too ashamed to say I was afraid to go and I didn’t want to make my friend feel awkward. So I went back. It was a horrible experience, and to this day he doesn’t realize the impact his response had on me.”
5 words that describe me:
Sexual assault can happen to anyone:
“My parents would always tell my sisters that if Johnny is with you, you’ll be safe. It became part of my identity. I truly believed that I could go anywhere I wanted and no one would bother me.”
On STIs after sexual assault:
“I was so upset when I found out I had an STI. I felt like this guy was still inside me and I couldn’t get him out. My body still wasn’t my own.”
Because of this first negative experience telling someone about the assault, he didn’t feel that there was a point to sharing his story with others. The fact that his friends and family did not know about it made him feel even more isolated and distant. “All I wanted to do was scream, to tell them ‘Your son, your brother, your friend was raped’ so they would know what I was going through. But I couldn’t; I just gave up.”
He later shared his story with his roommate, who reacted in a supported and caring way and helped him get access to testing when he developed symptoms of a sexually transmitted infection (STI) from the assault. “She was the supportive person I needed. She was the angel who helped me begin my recovery.”
When he went in for testing he had to retell his story multiple times to the medical staff—making him relive the trauma each time. The staff did not react in a supportive way, and they continued to ask repeatedly if Johnathon wanted to report to law enforcement even after he said no multiple times. “The doctors made me feel so uncomfortable and insignificant. And what was there to report? I couldn’t imagine how they would help me besides just make me retell my story again. I was just so embarrassed.”
Johnathon said that what he felt was most lacking in his medical experience after the assault was compassion and continued resources. “I told them I was raped and they gave me no resources or advice on what I could do next. I had to go home and google ‘what to do if you are raped’ and RAINN came up.”
Johnathon had intense feelings of anger, sadness, shame, self-blame, isolation, and alienation after the assault. “I punched a giant hole in my wall then broke down crying. I was just so sad. I wanted it to be over.” He experienced anxiety attacks, PTSD, depression, trouble eating, and loss of relationships in his life. “I didn’t want to end my life, but I thought all the time about how nice it would be to just not be, to not feel. All I wanted to do was sleep because then I would have to live less of the day and not feel anymore.”
Before the assault, Johnathon found an immense amount of fulfillment and purpose in his job as a hair and makeup artist. “I loved my job so much; it was transformative. I had the ability with my hands to make someone feel great, to bring their inner beauty out.” But after the assault, he quit his job. “I could no longer help myself or make myself feel better, so how could I do that for others?”
Keeping a list of self-care activities that made him feel happy and grounded and has been important in Johnathon’s healing process. When he felt lost and alone, he would refer back to the list and make himself do one thing he loved. “I started really focusing on my own recovery and what was going to make me happy, and I had to cut some people out of my life who weren’t supportive of that.” Though it was difficult for Johnathon to lose these people, it helped him eventually form new friendships with others who were understanding and caring in the way he needed.
Jonathan has noticed that in the year since the assault happened he feels afraid to go anywhere alone or to receive attention from others, and as a result he has started dressing and presenting himself to the world very differently. “I would say that I am gender nonconforming. Before the assault I used to have long hair and wear makeup or a dress sometimes. I stopped doing that completely. Now I try to look as much like a cis, straight guy as possible because I feel like it will protect me. I don’t feel like myself anymore, but I don’t want anyone to notice me or bother me. I want to be invisible.” For Johnathon, it’s important to let other survivors know that every survivor’s healing is individual and there is no one way it should look. “It’s still so fresh for me, I’m still focused on my initial recovery and am not at the stage like some survivors are of being able to go out there and advocate for others. I know that it will get better, but I’m still very much in that process.” Currently, Johnathon is finding healing and joy in his hobby of knitting and crocheting, and he loves to donate the hats he makes to those in need. “Knitting is meditation for me. I’ll start knitting when I feel an anxiety attack starting, and it soothes and focuses me.” He is also happy to report that he is restarting his career as a hair and makeup artist.
“You don’t need to rush it. Healing is a marathon, not a sprint. Go slowly and be patient with yourself.”
Willow and Sage by Stampington
You Will Need
Yields about 14 cotton pads
2 TB. witch hazel
1 TB. aloe vera gel
1 TSP. sweet almond oil
1/4 TSP. Castile soap
4-oz jar with lid
14 cotton facial pads
To Make
Add the ingredients to a 4 oz jar. Gently shake the jar to combine ingrediants. Add the cotton facial pads to the jar, pressing the pads down into the liguid. The pads will absorb most (or all) of the liquid. Secure lidon the jar and store at room teperuture.
To Use
Remove the moistened facial pad from jar and wipe your face with both sides of the pad to remove makeup. Wash your face with facial cleanser after using the wipes. Since the solution only contains 14 facial pads you’ll need to make a new solution every two weeks.
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 tick born illnesses and more are discovered each year. This year a more a deadly tick-born illness, Powassan Disease was discovered and it’s the most deadly. Please take notice and protect yourself and children.
This post is a combination of photos, snippets from previous post and new information. If you have questions visit ILADS website for the most accurate information on tick born illnesses. This association is for doctors who treat Lyme, educators of Lyme and the medical community who are there to increase knowledge.
I am walking after four years spent in bed, how could anything be worse than Lyme Disease? The illnesses Lyme leaves behind are debilitating and worst. I’ve lost four years of my life, screaming in pain, narcotics, nine months of twice a day IV Antibiotic Infusion Treatments. I can not stress enough how dangerous Tick-Borne illnesses are, they can kill you and your children. 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 went thru.
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. In the wild animals of all types of animals die, many pests visit the buffet. The critter who is carrying Lyme disease bites you and there is a short window for medical attention.
The flying pest target is blood, they have to eat. They don’t discriminate on where they go for lunch. The ticks who carry Tick-Borne illnesses are smaller than a grain of rice, try to find that while doing a tick check, you will not see them.
Before you get dressed, spray sunscreen with insect repellant with 20% DEET. Reply every hour if sweating or in heavily wooded areas. Wear white soaks with your pant leg tucked in light-colored pants. Wear a white or light colored shirt, a hat that is longer in back to cover your neck. Be vigilant with your kids, if playing outside, spray. Better safe than sorry.
Most important, do tick checks on you and the kids throughout the day. Take some tape and if see a tick don’t touch it, pull it off with tape. While out hiking wear light colors, tuck pants in socks, wear a hat that covers the back of the neck. Lyme Dieses is not sexy.
Watch these extremely important videos and educate yourself. Know the early signs and a short antibiotic treatment may provide a cure. The bulls-eye rash talked about by doctors only happens 30% of the time.
The Lyme test doctors use only cover a few of the 30 strains of Lyme. I’ve had multiple tests over the past four years and not once did I show positive for Lyme.
Chronic Lyme disease causes other chronic illnesses in its wake and new illnesses can pop up at any time. I now suffer from Fibromyalgia, Dementia, Neuropathy, loss of balance and other cognitive issues. My life is not back to normal and never will.
Chaos
Seven days of IV’s
B12 Shots
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 based on the PMTF recommendations.
Beyond general feedback, the CPATF letter includes specific suggestions on nearly every section of the report. To read CPATF’s full letter, click here.
The PMTF is now working to review the comments received, finalize the report, and submit it to Congress at the end of May. The PMTF will hold its final meeting in Washington, D.C, on May 9 and 10, which will again include a public comment portion and will be live streamed. The pain community is encouraged to participate. More information about the meeting can be found here.
U.S. Pain Foundation will share further updates once the final report is released.READ THE JOINT LETTER
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.
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.
Truth: Each body can have a different reaction to each strain, even if you have the same medical condition. Patience is needed. Don’t give up on your first try–each person must find the strain that best works for their bodies.
Truth: There are many strains of the plants to choose from. Some have a higher ratio of THC than others and others have much lower THC and higher CBD. So take time to do your research before deciding which strain might be best for you! The professionals at your local medical dispensary are also a good resource.
Truth: While medical cannabis is widely considered to be much safer than many medications, it does come with risks. Be especially careful for when you ingest cannabis, as it will not activate immediately and can take up to even hours before you feel the effect. So if you take a bite of that cookie and think you feel nothing, don’t eat the rest or you risk ingesting too much and being very high, which can cause a bad reaction, like anxiety.
Truth: ingesting your medication means it not only takes longer to activate but also takes longer before it leaves your system. This is a good reason to take it in small doses to get to your right dose for pain relief and not cause yourself to feel high. If you take too much, don’t panic. It will wear off. but it can take hours.
Truth: There are two main categories of medical cannabis strains. The indica strains have higher CBD and lower THC counts. They can help with increased mental and muscle relaxation; decreased nausea and acute pain; and increased appetite and dopamine. Indica is typically preferred for night-time use. Meanwhile, the sativa strains have lower CBD and higher THC counts. They can help with anxiety and depression; chronic pain, and increased focus and serotonin, Sativa is usually preferred for daytime use.
Truth: Many do not smoke cannabis for their medicine. You can, for example choose to vaporize, take pills, tinctures, topicals, patches, oil, edibles and even use drinks.
Truth: In most states, a doctor would need, in most states, to sign a from identifying and confirming you have a qualifying condition, not a prescription. Typically, you would then use this documentation to apply for a medical cannabis card from your state.
Truth: Each state presently has their own laws, some only allowing CBD from the hemp plant, three with no laws at all, and the rest with some form of a medical cannabis program established. Educate yourself on your state’s specific laws and be cautious when traveling between states.
Truth: In some states, you are allowed to grow your own or have a caregiver grow for you. For others, you go to the dispensary to purchase your medication.
Truth: Only the country of Germany presently covers the cost of cannabis. For the rest of us, it is not covered–yet. Only once the federal government gets cannabis out of Schedule I and all states allow a medical cannabis program, will insurance coverage for medical cannabis be possible.
Truth: Many states have very specific lists of conditions that qualify for medical cannabis use. If your specific condition is not listed as a “qualifying condition” and your state does not include the wording of “chronic pain,” you may have difficulty being allowed into the program. However, some states are beginning to allow the doctor to decide what patient should be using cannabis, which helps many get into the program.
To learn more about medical cannabis for pain and start advocating for access in your state, visit https://uspainfoundation.org/medicalcannabis/. To learn more about Ellen and her work, visit http://ellenandstuartsmith.squarespace.com/.
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, AL
Date: The first meeting will be May 2.
Time: 6-7:30 pm.
Location: The Brook Besor Coffee Shop, 4204 Martin St. S., Cropwell, AL
Contact: Melissa Gilliam at mgpainwarrior@hotmail.com or 205-863-1361
Oakhurst, NJ
Date: The first meeting will be May 10.
Time: 11 am-12:30 pm
Location: Wyatt Rehabilitation, 1806 NJ-35, Suite 302- 3rd Floor, Oakhurst, NJ (Elevator available.)
Contact: Sue Ann Stelfox at 650-455-6713 or sueannstelfox@gmail.com
To learn more about Pain Connection’s other support group offerings, visit its website.
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 some instances. However, they also vigorously defended the Guideline, stating that the “medical and health policy communities have largely embraced its recommendations” it has sparked “accelerated decreases in prescribing” and it was rated “high quality by the ECRI Guidelines Trust Scorecard.”
“In contrast to the FDA’s direct warning about widespread and serious harms to chronic pain patients that have already occurred, the CDC authors seem to avoid direct discussion of what has sadly already transpired,” says U.S. Pain National Director of Policy and Advocacy Cindy Steinberg. “ The authors say ‘patients may find tapering challenging’, ‘could face risks related to withdrawal’, and ‘if dosages are abruptly tapered, may seek other sources of opioids or have adverse psychological and physical outcomes’. They go on to say that ‘some clinicians may find it easier to refer or dismiss patients from care’ and ‘Clinicians might universally stop prescribing opioids, even in situations in which the benefits outweigh the risks.’” [Emphasis added in italics]
“Opioid pain medication does not help everyone with chronic pain and for those who are helped, opioids do not completely take the pain away,” Steinberg continues. “However, the fact remains that for millions of pain sufferers, particularly those with severe pain, who take them responsibly and legitimately, they are a lifeline that allows them to have some quality of life and lessens their relentless pain. In the three years since the Guideline was released, thousands of stories have surfaced about forced tapering and patient abandonment. Yet, CDC has largely ignored the suffering of Americans living with pain.”
Authors of the New England Journal of Medicine article did not announce any changes to the Guideline in response to these harms, but said the CDC is evaluating the intended and unintended impact of the Guideline and is committed to updating recommendations when new evidence is available.
While this is a step in the right direction, Steinberg says, the CDC should have enough evidence of harm to revise the Guideline, particularly Guideline 5.
To learn more about U.S. Pain Foundation’s position on opioid prescribing, click here.READ U.S. PAIN’S POSITION STATEMENT
https://www.fda.gov/Drugs/DrugSafety/ucm635038.htm
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm635640.htm
Melinda Sandor
Ambassador-Texas
U.S. Pain Foundation
IDEAS TED.COM
Oct 31, 2014 / Atul Gawande
I learned about a lot of things in medical school, but mortality wasn’t one of them. I was given a dry, leathery corpse to dissect in my first term — but that was solely a way to learn about human anatomy. Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives and how it affects those around them? That all seemed beside the point. The way we saw it — and the way our professors saw it — the purpose of medical schooling was to teach us how to save lives, not how to tend to their demise.
The one time I remember discussing mortality was during an hour we spent on The Death of Ivan Ilyich, Tolstoy’s classic novella. It was in a weekly seminar called Patient-Doctor — part of the school’s effort to make us more rounded and humane physicians. Some weeks we would practice our physical examination etiquette; other weeks we’d learn about the effects of socioeconomics and race on health. And one afternoon we contemplated the suffering of Ivan Ilyich as he lay ill and worsening from some unnamed, untreatable disease.
The first times, some cry. Some shut down. Some hardly notice.
In the story, Ivan Ilyich is forty-five years old, a midlevel Saint Petersburg magistrate whose life revolves mostly around petty concerns of social status. One day, he falls off a stepladder and develops a pain in his side. Instead of abating, the pain gets worse, and he becomes unable to work. Formerly an “intelligent, polished, lively and agreeable man,” he grows depressed and enfeebled. Friends and colleagues avoid him. His wife calls in a series of ever more expensive doctors. None of them can agree on a diagnosis, and the remedies they give him accomplish nothing. For Ilyich, it is all torture, and he simmers and rages at his situation.
“What tormented Ivan Ilyich most,” Tolstoy writes, “was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need keep quiet and undergo a treatment and then something very good would result.” Ivan Ilyich has flashes of hope that maybe things will turn around, but as he grows weaker and more emaciated he knows what is happening. He lives in mounting anguish and fear of death. But death is not a subject that his doctors, friends or family can countenance. That is what causes him his most profound pain.
“No one pitied him as he wished to be pitied,” writes Tolstoy. “At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted. He knew he was an important functionary, that he had a beard turning grey, and that therefore what he longed for was impossible, but still he longed for it.”
When I saw my first deaths, I was too guarded to cry. But I dreamt about them. I had recurring nightmares in which I’d find my patients’ corpses in my house — in my own bed.
As we medical students saw it, the failure of those around Ivan Ilyich to offer comfort or to acknowledge what is happening to him was a failure of character and culture. The late nineteenth-century Russia of Tolstoy’s story seemed harsh and almost primitive to us. Just as we believed that modern medicine could probably have cured Ivan Ilyich of whatever disease he had, so too we took for granted that honesty and kindness were basic responsibilities of a modern doctor. We were confident that in such a situation we would act compassionately.
What worried us was knowledge. While we knew how to sympathize, we weren’t at all certain we would know how to properly diagnose and treat. We paid our medical tuition to learn about the inner process of the body, the intricate mechanisms of its pathologies, and the vast trove of discoveries and technologies that have accumulated to stop them. We didn’t imagine we needed to think about much else. So we put Ivan Ilyich out of our heads.
Yet within a few years, when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them.
I began writing when I was a junior surgical resident, and in one of my very first essays, I told the story of a man whom I called Joseph Lazaroff. He was a city administrator who’d lost his wife to lung cancer a few years earlier. Now, he was in his sixties and suffering from an incurable cancer himself — a widely metastatic prostate cancer. He had lost more than fifty pounds. His abdomen, scrotum and legs had filled with fluid. One day, he woke up unable to move his right leg or control his bowels. He was admitted to the hospital, where I met him as an intern on the neurosurgical team. We found that the cancer had spread to his thoracic spine, where it was compressing his spinal cord. The cancer couldn’t be cured, but we hoped it could be treated. Emergency radiation, however, failed to shrink the cancer, and so the neurosurgeon offered him two options: comfort care or surgery to remove the growing tumor mass from his spine. Lazaroff chose surgery. My job, as the intern on the neurosurgery service, was to get his written confirmation that he understood the risks of the operation and wished to proceed.
Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.
I’d stood outside his room, his chart in my damp hand, trying to figure out how to even broach the subject with him. The hope was that the operation would halt the progression of his spinal cord damage. It wouldn’t cure him, or reverse his paralysis, or get him back to the life he had led. No matter what we did, he had at most a few months to live, and the procedure was inherently dangerous. It required opening his chest, removing a rib, and collapsing a lung to get at his spine. Blood loss would be high. Recovery would be difficult. In his weakened state, he faced considerable risks of debilitating complications afterward. The operation posed a threat of both worsening and shortening his life. But the neurosurgeon had gone over these dangers, and Lazaroff had been clear that he wanted the operation. All I had to do was go in and take care of the paperwork.
Lying in his bed, Lazaroff looked gray and emaciated. I said that I was an intern and that I’d come to get his consent for surgery, which required confirming that he was aware of the risks. I said that the operation could remove the tumor but leave him with serious complications, such as paralysis or a stroke, and that it could even prove fatal. I tried to sound clear without being harsh, but my discussion put his back up. Likewise when his son, who was in the room, questioned whether heroic measures were a good idea. Lazaroff didn’t like that at all.
“Don’t you give up on me,” he said. “You give me every chance I’ve got.” Outside the room, after he signed the form, the son took me aside. His mother had died on a ventilator in intensive care, and at the time his father had said he did not want anything like that to happen to him. But now he was adamant about doing “everything.”
I believed then that Mr. Lazaroff had chosen badly, and I still believe this. He chose badly not because of all the dangers but because the operation didn’t stand a chance of giving him what he really wanted: his continence, his strength, the life he had previously known. He was pursuing little more than a fantasy at the risk of a prolonged and terrible death — which was precisely what he got.
The operation was a technical success. Over eight and a half hours, the surgical team removed the mass invading his spine and rebuilt the vertebral body with acrylic cement. The pressure on his spinal cord was gone. But he never recovered from the procedure. In intensive care, he developed respiratory failure, a systemic infection, blood clots from his immobility, then bleeding from the blood thinners to treat them. Each day we fell further behind. We finally had to admit he was dying. On the fourteenth day, his son told the team that we should stop.
It fell to me to take Lazaroff off the artificial ventilator that was keeping him alive. I checked to make sure that his morphine drip was turned up high, so he wouldn’t suffer from air hunger. I leaned close and, in case he could hear me, said I was going to take the breathing tube out of his mouth. He coughed a couple of times when I pulled it out, opened his eyes briefly, and closed them. His breathing grew labored, then stopped. I put my stethoscope on his chest and heard his heart fade away.
There’s no escaping the tragedy of life, which is that we are all aging from the day we are born.
Now, more than a decade after I first told Mr. Lazaroff’s story, what strikes me most is not how bad his decision was but how much we all avoided talking honestly about the choice before him. We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result.
We did little better than Ivan Ilyich’s primitive nineteenth-century doctors — worse, actually, given the new forms of physical torture we’d inflicted on our patient. It is enough to make you wonder, who are the primitive ones?
Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.
As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did.
This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital — say, from a massive heart attack, stroke or violent injury — or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes.
When I became a doctor, I crossed over to the other side of the hospital doors and, although I had grown up with two doctors for parents, everything I saw was new to me. I had certainly never seen anyone die before, and when I did, it came as a shock. That wasn’t because it made me think of my own mortality. Somehow the concept didn’t occur to me, even when I saw people my own age die. I had a white coat on; they had a hospital gown. I couldn’t quite picture it the other way round. I could, however, picture my family in their places. I’d seen multiple family members — my wife, my parents and my children — go through serious, life-threatening illnesses. Even under dire circumstances, medicine had always pulled them through. The shock to me therefore was seeing medicine not pull people through. I knew theoretically that my patients could die, of course, but every actual instance seemed like a violation, as if the rules I thought we were playing by were broken. I don’t know what game I thought this was, but in it we always won.
Dying and death confront every new doctor and nurse. The first times, some cry. Some shut down. Some hardly notice. When I saw my first deaths, I was too guarded to cry. But I dreamt about them. I had recurring nightmares in which I’d find my patients’ corpses in my house — in my own bed.
“How did he get here?” I’d wonder in panic.
I knew I would be in huge trouble, maybe criminal trouble, if I didn’t get the body back to the hospital without getting caught. I’d try to lift it into the back of my car, but it would be too heavy. Or I’d get it in, only to find blood seeping out like black oil until it overflowed the trunk. Or I’d actually get the corpse to the hospital and onto a gurney, and I’d push it down hall after hall, trying and failing to find the room where the person used to be. “Hey!” someone would shout and start chasing me. I’d wake up next to my wife in the dark, clammy and tachycardic. I felt that I’d killed these people. I’d failed.
Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely— that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.
The late surgeon Sherwin Nuland, in his classic book How We Die, lamented, “The necessity of nature’s final victory was expected and accepted in generations before our own. Doctors were far more willing to recognize the signs of defeat and far less arrogant about denying them.” But as I ride down the runway of the twenty-first century, trained in the deployment of our awesome arsenal of technology, I wonder exactly what being less arrogant really means.
You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence. It is a deep satisfaction very much like the one that a carpenter experiences in restoring a fragile antique chest or that a science teacher experiences in bringing a fifth grader to that sudden, mind-shifting recognition of what atoms are. It comes partly from being helpful to others. But it also comes from being technically skilled and able to solve difficult, intricate problems. Your competence gives you a secure sense of identity. For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve.
You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence.
There’s no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don’t haunt my dreams anymore. But that’s not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity and extraordinary suffering.
This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is, it is failing.
As I pass a decade in surgical practice and become middle aged myself, I find that neither I nor my patients find our current state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible. I have the writer’s and scientist’s faith, however, that by pulling back the veil and peering in close, a person can make sense of what is most confusing or strange or disturbing.
You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.
What if there are better approaches, right in front of our eyes, waiting to be recognized?
Featured illustration by Hannah K. Lee for TED.
This excerpt is adapted with permission from Being Mortal: Medicine and What Matters in the End by Atul Gawande (Metropolitan Books).
Atul Gawande is a surgeon, public health researcher, and staff writer for The New Yorker magazine.
IDEAS TED TALKS
May 1, 2019 / Nora McInerny
I quit my job shortly after my husband Aaron died in 2014 following three years with brain cancer. It made sense in the moment, but I needed money to keep my son and myself alive so I went to a networking event to hopefully make connections. I was introduced to a successful woman in her early 70s who everyone referred to as a “legend.” She wanted to meet me for coffee and I thought, “What could she possibly see in me?”
What she saw in me was herself. She had been 16 when her boyfriend died. He was her first love and they were teenagers in a different era, when it was perfectly plausible that you would be married after high school. Instead, he went to the hospital one day and never came back. She learned later that he’d died of cancer, which his parents had kept secret from him and from his friends. They didn’t know how to talk about it, and they didn’t want him or his friends to worry.
This boy had died decades ago. She was married, a mother and a grandmother. And she told me about his death as if it had happened weeks ago, as if she were still 16, still shocked and confused that her beloved was gone and she’d not had a chance to say goodbye. Her grief felt fresher than mine did, because I didn’t feel anything yet.
The only guarantee about grief is that however you feel right now, you will not always feel this way.
Time is irrelevant to grief. I cannot tell you that it will feel better or worse as time goes by; I can just tell you that it feels better and worse as time goes by. The only guarantee is that however you feel right now, you will not always feel this way.
There are days when Aaron’s death feels so fresh that I cannot believe it. How can he be gone? How can it be that he will forever be 35 years old? Likewise, there are days when his death feels like such a fact of my life I can hardly believe that he was ever not dead. I thought I would be able to control the faucets of my emotions — that certain days (his birthday, his deathiversary) would be drenched in meaning, and most days would not.
I wish that were the case; I wish we could relegate all our heaviest grieving to specific days of the year. It would certainly be more efficient. Instead, I know that I have some friends who will understand perfectly when I call them to say that the entire world feels heavy, that I’ve been crying for reasons I can’t quite explain other than that I am alive and Aaron is not, and the reality of that happened to hit me in the deodorant aisle, when I spotted Aaron’s favorite antiperspirant. I bought a stick for myself, so that my armpits and his armpits would be forever connected.
In 2017, Lady Gaga released her Joanne album, named for an aunt who died before she was even born. The titular song is 100 percent guaranteed to make you cry, and it’s written about someone Lady Gaga never even met. In her Netflix documentary, Gaga: Five Foot Two, she plays the song for her grandmother and bawls uncontrollably. Her grandmother listens to the song, watches Gaga weep, and thanks her for the song. She does not shed a tear. Their grief — even for the same person — is different. The roots of grief are boundless. They can reach back through generations. They are undeterred by time, space or any other law you try to apply to them.
The woman I met had lived far more of her life without that boyfriend than with him. Time had not healed that wound, and it never will.
A common adage is “time heals all wounds.” It is true physically, which I am grateful for because I am typing this while hoping the tip of my thumb fuses back together after an unfortunate kitchen accident involving me attempting to cook a potato. But it is not true mentally or emotionally. Time is cruel. Time reminds me of how long Aaron has been gone, which isn’t a comfort to me.
The woman I met for coffee had lived far more of her life without that boyfriend than she had with him. Her grandchildren were now the same age she’d been when she lost him. Time had not healed that wound, and it never will. If you’re still sad, that’s because it’s still real. They are still real. Time can change you, and it will. But it can’t change them, and it won’t.
And here’s some advice for the grief adjacent. For you, time marches on, steadily and reliably. A year is just a year. A day is just a day. You are not aware of the number of days it’s been since they took their last breath or said their last word. You’re not mentally calculating when the scales of time tip, and more of your life has been lived without them than was lived with them.
We do not move on from the dead people we love or the difficult situations we’ve lived through. We move forward, but we carry it all with us.
You may be tempted to tell the grieving to move on. After all, it’s been weeks. Years. Decades. Surely this cannot still be the topic of conversation. Surely, at this point, they must have moved on? Nope.
But, you may be thinking, “This person has gotten married again or had another baby! They have so many good things in their life, this one awful thing can’t possibly still be relevant … can it?”
We do not move on from the dead people we love or the difficult situations we’ve lived through. We move forward, but we carry it all with us. Some of it gets easier to bear, some of it will always feel Sisyphean. We live on, but we are not the same as we once were. This is not macabre or depressing or abnormal. We are shaped by the people we love, and we are shaped by their loss.
“Why are they still sad?” you may think. Because this is a sad thing, and always will be.
Excerpted from the new book The Hot Young Widows Club: Lessons on Survival from the Front Lines of Grief by Nora McInerny. Reprinted with permission from TED Books/Simon & Schuster. © 2019 Nora McInerny.
Nora McInerny has a lot of jobs. She is the reluctant cofounder of the Hot Young Widows Club (a program of her nonprofit, Still Kickin), the bestselling author of the memoirs “It’s Okay To Laugh”, “Crying Is Cool Too”, and “No Happy Endings” and the host of the award-winning podcast “Terrible, Thanks for Asking.” McInerny is a master storyteller known for her dedication to bringing heart and levity to the difficult and uncomfortable conversations most of us try to avoid, and also for being very tall.
I was at a complete loss for words when I learned that Melinda at https://lookingforthelight.blog/, choose to nominated me for this award because there are so many others with amazing stories of their own. I never in a million years would have thought that I would have such an honor to be nominated for The […]
The Disability Award — Fightmsdaily
Thank you for all the loving messages this week, you know how to make me feel alive. Which is better than being dead! Have a great weekend and be safe. Melinda
Christina Grimmie
lookingforthelight.blog 