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Racism Is a Pandemic: A Statement from the Global Healthy Living Foundation

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Racism Is a Pandemic: A Statement from the Global Healthy Living Foundation

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As a non-profit organization whose mission is to help people live healthier lives, the Global Healthy Living Foundation and its digital arthritis community, CreakyJoints, supports those who are calling for racial justice in light of the recent and brutal killings of George Floyd, Ahmaud Arbery, and Breonna Taylor as well as all of the victims who came before them. We stand with the nationwide protests that are an expression and culmination of sentiment that refuses to remain silent in the face of systemic institutionalized racism.

As James Baldwin wrote: “Not everything that is faced can be changed. But nothing can be changed until it is faced.”

GHLF has spoken out against systemic societal inequalities that have infected our institutions and black Americans individually, leading to growing health disparities among other inequities that the COVID-19 pandemic has scathingly exposed. See “Are People Dying from COVID-19 Because They Are Black in America?” by patient advocate Tinu Abayomi-Paul and an advocacy sign-on to demand more investigation and publicity around COVID-19 health disparities as recent examples.

Now — more than ever — we must speak out against the institutional oppression and systemic disregard for black and brown lives in America.

Silence makes us complicit, and we cannot ignore the injustice that is unfolding before us.

We know that the collective pain and trauma of racism, both overt and silent, is real for people of color in America. Centuries of unequal access to quality education, healthy food, livable wages, health care, and affordable housing — as well as seeing people of color attacked and killed repeatedly, now amplified on social media — has compounded these issues, creating systemic health care disparities.

We believe that racism is also a health care issue. It, too, has become a pandemic. It must stop.

We call on our fellow health care non-profits to join us in exposing and fighting this public health issue.

Additional Resources

We asked our staff to share some of the resources they have read recently to deepen our understanding of this watershed moment for our nation and curated their responses.

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Yoga Could Help Cut Your Migraine Medication Use By Half, Research Shows

Yoga and Migraine

If you struggle with the throbbing pain, nausea, and sensory sensitivity of migraine, adding a yoga practice to your treatment plan may help to reduce the intensity and frequency of these often-debilitating attacks, as well as to lessen the amount of medication you need to take to manage this neurological condition. That’s the finding of a new study published in the journal Neurology, which looked at the effectiveness of yoga in tandem with taking medication for migraine.

In the study, 114 men and women who experienced episodic migraine with or without aura were split into two groups — one that took medication only, and another that added a standardized yoga practice five days a week to their treatment plan. After three months, the participants who practiced yoga in addition to taking medication experienced more relief from migraine in conjunction with their medication than the group that received medical therapy alone.

In fact, more than 12 percent of the people in the yoga group became headache-free by the end of the intervention, in comparison to none in the medication-only group. They also reduced their average medication intake by nearly half.

This is an encouraging finding, in part because episodic migraine — which means you have up to 14 headache days a month— may lead to chronic migraine, which is characterized by 15 or more headache days a month.

How Yoga Helps Migraine

Yoga likely benefits migraine patients for multiple interrelated reasons, says Rohit Bhatia, MD, a professor of neurology at All India Institute of Medical Services in New Delhi and one of the study authors. For instance, yoga helps relieve muscle tension caused by trigger points in the head and neck. Tight muscles hold more stress, which is a known cause of migraine. These hyperirritable spots have been shown to be significantly more prevalent in people with migraine compared to those without migraine.

Yoga also modulates the body’s autonomic nervous system, which controls the involuntary response to stressful situations. “This reduces blood pressure, heartbeat, and stress-related hormones,” all of which can lead to clinical manifestations of migraine including nausea, vomiting, diarrhea, flushing, and skin pallor or flushing, says Dr. Bhatia.

Finally, yoga is a mood elevator. “Migraine patients are prone to depression, and the release of endogenous [natural] opioids and [mood-boosting] endorphins, and a decrease in the circulating substance P [a neuropeptide involved in depression and anxiety] are all factors that may contribute to a happy state of mind,” says Dr. Bhatia.

What the Yoga Routine Included

The yoga routine performed in the study started with prayer and breathing and meditation exercises. Then participants performed relaxation techniques and physical exercises to warm up the body, followed by quick relaxation techniques.

A series of asanas, or body postures (commonly performed yoga poses include Downward Facing Dog, Tree, Warrior, and Triangle), yoga nidra in savasana pose (a type of deep relaxation done at the end of the practice), and more breathing poses (pranayama) rounded out the yoga sessions.

The program was developed for beginners, but the researchers recommend talking with your doctor before using it to supplement your treatment to be sure there’s no reason it could be harmful. Because exercise is an excellent way to reduce stress, most doctors are likely to give the thumbs-up. In fact, if you’re one of the 20 percent of migraine patients for whom physical exertion is a trigger, the slower, mindful movements and even static muscular exercises done in yoga are considered to be a good alternative to more active exercises.

How to Start Doing Yoga

Here are some tips from the American Migraine Foundation about starting a yoga practice.

If you’re looking for online yoga classes to do from home while following stay-at-home orders, check out these resources:

Kumar A. Effect of yoga as add-on therapy in migraine (CONTAIN). Neurology. May 6, 2020. doi: https://doi.org/10.1212/WNL.0000000000009473.

I’m Finally Getting Surgery for Triple-Negative Breast Cancer, After It Was Almost Delayed Due to COVID-19

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Marissa Sullivan Breast Cancer COVID-19

The coronavirus pandemic has thrown hurdles in everyone’s lives, but the way it has affected cancer patients in the midst of treatment is particularly rough. I’d say it’s a bit more of a hardship than waiting another month to get a haircut or having to get your margaritas curbside.

I am thinking this as I lie on a mattress on the floor of my empty L.A. apartment, eating broccoli mac and cheese the day before my long-awaited lumpectomy.

Because of COVID-19 and its numerous disruptions, many people feel like they have nothing to look forward to right now. Not me.

I’ve been eagerly waiting for this surgery ever since I was diagnosed with triple-negative breast cancer six months ago. My cancer is considered a clinical stage 2. We don’t know the actual stage yet since, for this kind of cancer, chemotherapy is typically given before the tumor is surgically removed. It’s a grade 3 tumor, which means it is fast-growing.

I have been anxious, stressed, and worried that my surgery would get postponed because of COVID-19, but thankfully it is on track.

I have already endured 20 weeks of chemotherapy — most of it before COVID, but not all. It’s been nearly one month since my last chemo treatment.

I’m getting more and more energy back each day, my hair has finally stopped shedding (and thankfully still I have a full head of it, thanks to DigniCap scalp cooling), my leg hair is growing back (which is good news for my eyelashes and eyebrows), my hot flashes have subsided, and my heart rate is no longer sky-high at all times. It’s pretty scary to lie in bed all day and have your Apple watch alert you that you’ve reached your daily moving goal when you’ve only gotten up to use the bathroom a couple of times.

Getting Unstuck

Back to the mattress-on-the-floor scene. Since the coronavirus pandemic began, I’ve been stuck in my own version of purgatory, along with the rest of the globe.

I’ve been stuck geographically, since I’ve had to remain here in L.A. for cancer treatment. I’ve been stuck in my career as an entertainment reporter and events director, since a lot of my work is canceled and I’m on disability anyway. I’ve been stuck with my health, in a holding pattern while waiting to see whether the chemo worked and whether my surgery could take place as scheduled. Even my marriage feels stuck right now (more on this below).

The week leading up to surgery, most people rest up mentally and physically. Me? I decide to spend days packing and throw my life into a storage pod. Yes, I like to pile on as much stress as I can for some reason. Does that make me a masochist?

I need to get un-stuck. That’s why as soon as I get clearance from my docs, I’m hightailing it out of here and driving across the country to spend some much-needed time with my family in Florida at a house with a pool in the backyard. I’m looking forward to quarantining in comfort after months of being trapped in an apartment — what feels like a vertical cruise ship — in downtown L.A.

As I packed up my belongings, sifting through boxes of senior-year pictures, old headshots, and young love notes, I couldn’t help but think dark thoughts. I felt as though I were a living ghost going through my things after I had died.

What if this is the last time I will see any of this stuff? Then, SMACK! An imaginary hand would slap those negative thoughts out of my head. I have to tell myself to think positively, but I’ve always had a flair for drama.But this might not be drama! You could actually die from this cancer. See, there I go again.

I had planned to pack up my things a few weeks after the surgery, but something came over me and I was compelled to handle it beforehand. Partly to just get it over with so that I could focus on healing afterward, but also because of our rapidly changing world. Who knows what a difference three weeks will bring these days.

Sure enough, the day after I decided to start packing, Governor Newsom extended California’s shelter-in-place through the end of July yet at the same time began to allow more low-risk businesses to open in a phased-out plan. Then there’s the possibility of a spike in COVID-19 cases from this reopening phase, which could lead to further shutdowns and possibly even more restrictions at state borders.

Putting My Health First

I want to get to Florida safely before any of the above could possibly threaten my travels. I believe it is the only form of utopia I have within my reach at this point. The reward, I hope, will have been worth the week of self-torture from moving for the second time since my cancer diagnosis.

The first was moving into my own little peaceful studio loft (or “che-motel” as I call it) a block away from my husband so that I could heal in peace. Sadly, we weren’t getting along before my diagnosis. Although cancer and COVID-19 have brought us closer and he’s been staying over a lot, I told him that living together full-time again is sort of like the reopening of America: It has to be done in phases.

Once I am recovered and past this, I can figure out what’s next with my marriage and my life, but until then I MUST put my health first and be as stress-free as possible. After all, it’s my life. And there is a high chance of recurrence. I cannot bend on this, it’s simply not worth it.

If I were in my twenties or even thirties and cancer-free, fine. But no stress is worth it right now for me, whether it’s a job or a relationship. I need to focus on the present and my survival. “If there’s no me, then there’s no us,” I tell him. It’s time to be selfish.

Feeling Hopeful

And now that my coveted cancer surgery is finally upon me after I was told it was almost postponed due to COVID-19 (many others had been, but I am apparently one of the lucky ones), I’m realizing that although this has been a semi-torturous wait, it’s actually been pretty blissful and relaxing.

Why wait in agony for answers when you can enjoy the present? That’s exactly what I’ve been doing for the most part or trying to. My aunt put it like this: It’s like stressing about a mortgage before you’ve even bought the house.

My doctors seem hopeful and reiterate the same. There is no use worrying about something that might not be. So, no mortgage-stressing for me. I have enough bills to pay.

My surgeon, after I nicely demanded during my pre-op appointment that she tell me anything that they may have kept from me from their assessment of tests and scans, says everything is looking “very good.”

My oncologist echoed that sentiment but admitted that even if microscopic cells have not spread to my lymph nodes, they may have traveled through my bloodstream. Oh thanks, I wasn’t thinking about that until now. She also mentioned that if I do not have a pathological complete response to the treatment that I will need to be on a type of chemo pill for six more months after my two months of radiation. The pills would target any possible microscopic cells that may have escaped the breast area. If that’s the case, then I’m not even halfway through my treatment. Sigh.

And it’s all Hail Mary from there. I went to a Catholic school growing up (although I’m not really religious) and Mary is the patron saint for “Marisa” so I’m hoping my girl comes through for me. That would be chill.

Interpreting My Dream

I’ve started having some pretty bizarre pre-surgery dreams. A famous Hollywood star’s D-list son was my surgeon last night; he also was moonlighting as a bartender at the famed Roxy nightclub on Sunset. The hospital doubled as an event space with Suzanne Sommers strolling by and muttering, “I’ve got to get out of here.”

Perhaps this dream symbolizes me leaving my Hollywood life after 20 years and this tumor coming out was all the toxicity I’ve been exposed to, including the pollution and fires here in L.A.

A change of pace will be nice.

Moving on With My Life

I had several appointments this past week leading up to my surgery, including a mandatory drive-through COVID-19 test near the hospital, 48 hours prior to my scheduled admittance. I swear they even made us keep our cars six feet away from each other. Health care workers in scrubs on top of scrubs, masks, and face shields swiveled a nice long swab up my left nostril and then I was on my way. No word back, so it’s safe to say I’m clear.

I’m not really nervous, but I am ready to get the surgery over with. Although part of me has come to embrace this protective cocoon of the unknown, I want to wake up to good news and get on with my life.

Luckily, my surgery was moved out of the main hospital into another building away from COVID-19 patients, which is such a relief. That had been one of my main concerns and I had even lined up two back-up options at other cancer hospitals just in case. Of course my doctors had reassured me all was fine, but given the fact that the surgery was indeed moved, I suspect I was right to be concerned.

No visitors are allowed, which I expected, but it is a little sad that I won’t have a comforting face to smile at when I wake up from boob-gate.

My mom wanted to fly in, but I told her it was too risky to travel at her age — and what if I was exposed? My white blood cell count is still not too high, according to this week’s blood test. Still waiting for those suckers to increase to healthy, infection-fighting levels.

My family and friends all have a good feeling about this. A legitimate good feeling — I know they’re not just blowing smoke. I do as well. As someone usually prone to anxiety who currently doesn’t really have any — not even from dealing with cancer in the era of COVID — it makes me wonder if my body is already telling me the good news.

To hear the words “cancer-free” would be a dream come true. But I also want to prepare myself for the alternative, which I know can still be far from a death sentence. Even if I have some residual disease left and even if a couple of my lymph nodes are positive, there’s still a chance that cancer cells have not yet widely spread. I’m aiming high but will settle for second- best. One step at a time. Chemo, surgery, then we’ll figure out the rest. I’m just super thankful that my lumpectomy is able to happen on time, as that really had been my main fear thus far. Then I’m one step closer to hitting the open road and finishing my treatment out east in some relaxing tropical weather.

And finally, if all goes well after my surgery and all of these treatments, the last phase will be the reopening of ME. Cancer-free. Ready to take on the world yet again.

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How My Breast Cancer Diagnosis — and the Coronavirus Pandemic — Is Finally Easing My Resentment from a Miscarriage

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Marisa Sullivan Breast Cancer Pregnancy Loss Coronavirus

I just finished 20 weeks of chemotherapy for stage II triple-negative breast cancer and am waiting to get my tumor (or what’s left of it) surgically removed.

Handling all of this — in the middle of the coronavirus pandemic, no less — has been the biggest hurdle of my life by far.

But I will say that having a miscarriage two years ago was nearly as devastating for me — and  maybe even worse at times, physically and emotionally, than my cancer diagnosis. And yet, women are seemingly expected to skate over that pain just because it is so “common.” Well, so is cancer.

The First Glimmer of Good News

It was January 2018. Awards season had just kicked off in Los Angeles and I had just covered the Golden Globes red carpet for an entertainment magazine. A few days later, I was off to an intimate birthday dinner for Mary J. Blige at the Hollywood restaurant Ago. Yes, it sounds glamorous but after years of running around in heels, I often dreamed of sweats and pizza at home, although it was pretty cool dancing with MJB to “Family Affair.”

I had a couple of “champers” (my preferred poison) at the bar but then shockingly, I suddenly did not desire another. I didn’t drink most days of the week, but if champagne was flowing, I could easily have 95 flutes of it. I just unexpectedly lost a craving for champagne. It was something straight out of the Twilight Zone.

The next day, I realized that my period was supposed to have arrived somewhere between Best Supporting Actor and Best Screenplay, but … it didn’t. And I had been too busy buzzing around red carpets to notice until now.

“You should take a test,” my partner said over the phone. Could I be? At 38 years old, I had never been pregnant. We had just gotten back from the Dominican … I didn’t say anything but marched over to CVS immediately. I wanted it to be my idea to get the test, naturally.

On my walk home, I was close to stopping in this downtown L.A. dive bar called The Golden Gopher — not to drink, but because I thought it would be funny to take the test there (so I’d have a good story for my future child). Anything for a laugh. Maybe that’s part of my problem but that’s another saga. My warped sense of humor runs in my family.

I went home to take the test, though, and sure enough, it was positive.

Allowing Myself to Hope

The weeks following brought some intense highs and lows in a very condensed amount of time. We had an early, healthy heartbeat and an ultrasound pic with a heart drawn around it waiting to share it with the world.

My mind started sifting through baby names, baby shower themes, who would be there for the birth, would I do a natural childbirth, in what outfit we would bring him or her home from the hospital? I had not been a detail-oriented bride. I was not even into wedding stuff, really. Who am I?!!

My whole life changed rapidly in my head, and I was embracing it. And also getting a bit ahead of myself, I know.

So this was it. I finally knew what that “maternal instinct” felt like, or at least a sliver of it. I surprised myself and was taking things overly seriously. Not one sip of wine. No “bad” food, all health food. My entire thought process shifted toward what was best for our baby.

Frankly, I was shocked that I was pregnant. I never knew if it would happen for me. I never had a sense about it and my intuition is strong.

The Short Journey to Loss

Then one day shortly after the big news, I started bleeding off and on, which was sometimes normal, but of course I was paranoid. I got in to see the doctor as soon as possible. There was a minor tear, but the baby was okay. However, I was told I had a threatened miscarriage (a higher-risk pregnancy) and had to take it easy in bed, which I did.

But then I kept bleeding more. By the time I went back in for another check-up, the baby’s heartbeat was slowing down. My doctor predicted that it would continue to slow down. No! My body is strong. My baby is strong. The doctor is wrong. There is still hope.

But she was right. My next appointment, there was no heartbeat. We lost the baby at eight weeks.

“There’s nothing that you did wrong,” my doctor said. But I didn’t believe that deep down. I think stress and hormones have a huge impact on health and pregnancy, and there was a high amount of stress going on in my life at the time.

Well, maybe not as much as now.

I was given a pill to help it pass and went back in for the last time only to stare blankly at the hollow hole showing up on the ultrasound screen where the teeny little life used to be. Faces of newborns gazed at me from the walls on printed cards with sayings like, “Welcome to the world, Sadie.”

The ‘Secret Society’ I Never Knew Existed

The post-miscarriage hormones were no joke. I felt like a prisoner in my own body. My body was so low-energy from my plummeting hormones that I could barely walk across the street. I was in bed for nearly two months (a warm-up for later, apparently) and I suffered for months after. I would just wake up and cry. I blamed myself, I blamed my partner, I blamed financial stress, I blamed a Pilates workout I did that day when I felt something go wrong.

I didn’t understand how this could happen to ME. I wished I had been better prepared for this; I felt like I was sideswiped. I was never really warned about how common miscarriages are because no one seems to talk about it.

My doctor said nearly half of women don’t carry their baby to term. Everyone says the word “miscarriage” so casually and matter-of-factly on the surface when it’s all over, but they don’t share the individual pain they went through. Maybe we are just conditioned to do that.

Privately, many women opened up to me about their losses. Some had multiple miscarriages. It was a shocking number of women. What is this, some secret society? My mom even told me she had one before having me and I had zero clue. But then, hey, I wouldn’t be here! I’m a  “rainbow baby,” as they say.

I know it could have been much worse. Some women have late pregnancy loss, which is unfathomable. But this was my experience, and then it was gone. And now that I’m a breast cancer patient in the midst of an unprecedented deadly pandemic, it looks like this baby might have been my only chance at going through one of the greatest joys in life.

But c’est la vie. There is something a little more pressing to get through first.

A lot of women who go through miscarriage wind up getting pregnant again right away, so that temporary pain is perhaps whisked away as new life finally comes to fruition. But not for me. And something just didn’t feel right.

Searching for Meaning

I’ve always been the one to search for deeper meaning in a bad experience, or any experience really. I started to contemplate why this happened to me. “Everything happens for a reason,” I reminded myself.

“Maybe I’m going to get another fabulous job traveling that I wouldn’t have been able to take as a mother.”

“Maybe it’s just not the right time and I have a few more years of living it up.”

Then: “Maybe I’m going to get cancer or something and that’s why this didn’t happen for me,” I said this to my partner and friends who looked at me oddly, teasing me about how morbid I was.

It was a strange thing to say, I know, but I had a sense about it. I have had many prophetic dreams of loved ones’ deaths, illnesses, and accidents. I just couldn’t get it out of my head.

Well, it looks like the cancer had already been setting up camp. In hindsight, I remember thinking it was odd that my left breast had all of a sudden gotten bigger and I brushed it off as a pregnancy symptom, although I had been meaning to get that checked.

Maybe somehow that fleeting little life was here to warn me. Or to at least give me the gift of finding out I was going to be a mother so that I would have that experience, even if for a very short time, before cancer would threaten my life.

Accepting What I Can’t Control

I am still fighting. I am still trying to make sense of all of this. But at least for the first time since my pregnancy loss, I am actually relieved that I do not have a child to take care of right now.

I have released a lot of that pain and blame as I redirected my energy for this larger battle.

It is difficult enough taking care of myself and focusing on survival.  The stress of protecting a little one would be an unbearable weight, although I know innately I would muster the strength. I sympathize with parents right now who are not battling illness and struggling so much during our present situation — let alone parenting through cancer and COVID-19.

Dealing with financial stress and relationship stress is one thing, but the thought of dealing with a toddler during a cancer battle in a coronavirus pandemic has finally eased some of that resentment I had with myself and others.

We had planned to try for another baby when the time was right, but then the big “C” news happened. Although I went through the egg retrieval process prior to starting my cancer treatment, there may not be another chance for motherhood. I will just have to wait and see.

Everything is out of my control right now, and that’s OK. I’m not alone. Like I said, my doctor told me I did nothing wrong and I guess I’m just gonna have to go with that. For now, I’m riding out the world’s fate along with my own, finally at home in my sweats eating pizza and hoping to pop that bottle of champagne soon after some cancer-free news.

And then maybe, just maybe, my rainbow baby will come.

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Migraine Home Remedies That Headache Specialists Approve

Migraine Home Remedies

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The connection between stress and migraine attacks isn’t in your head. “Up to 80 percent of migraine patients report that stress can be a trigger,” says Enmad Estemalik, MD, MBA, section head for headache and facial pain at the Center for Neurological Restoration at the Cleveland Clinic in Ohio.

“It is very well-studied,” adds Deena Kuruvilla, MD, assistant professor of neurology at Yale School of Medicine in New Haven, Connecticut. “High stress levels have been shown to cause an uptake in headache days. Sudden drops in stress levels have been shown to cause migraine. Migraine itself produces a lot of stress for patients as they can be scared to miss important life events.”

Navigating the coronavirus pandemic has certainly affected stress levels, and many of the stressors you’re dealing with while sheltering in place and practicing social distancing can trigger migraine attacks. Any of the following sound familiar?

  • Sleeping too little or too much
  • Increased alcohol and caffeine consumption
  • Eating more processed foods
  • More screen time than usual
  • Juggling work and homeschooling
  • Financial concerns
  • Lack of social connection
  • Generalized worry and anxiety

What to Do If You Are Having More Migraine Attacks During the Coronavirus Pandemic

“If these stressors are increasing your migraine frequency — especially if you’re having 15 headache days or more a month — it is important to touch base with your health care provider to get a prevention strategy,” says Dr. Estemalik. “We don’t want patients to overutilize over-the-counter medicine, which could cause medication overuse headaches.”

Dr. Kuruvilla adds some good news: “Migraine is a very treatable condition over telehealth.”

Managing Migraine Under Quarantine

While so-called “home remedies” are never a replacement for a prescribed treatment regimen — even in the middle of the coronavirus pandemic — they may possibly supplement your medication and help reduce the frequency or intensity of your migraine attacks.

We asked top migraine specialists for advice on inexpensive tools as well as headache hygiene and self-care strategies to manage migraine and stress during the coronavirus.

Remember to talk to your doctor before experimenting with anything new.

“There’s no one [remedy] that fits everyone,” says Merle L. Diamond, MD, president and managing director of Diamond Headache Clinic in Chicago. “Think about the things that are soothing for you and that you can accomplish.”

Roll it out 

A foam roller is a great, inexpensive tool to help relieve tension in any trigger points, like your neck, shoulders, and back, that can cause headache, says Dr. Diamond.

Keep it cool (or hot)

Depending on whether you find relief from hot or cold during a migraine attack, consider purchasing a good heating pad or gel ice pad for your neck, says Dr. Diamond. “Apply it for about 15 minutes,” she says. “If you’re using heat, make sure you have good padding so you don’t burn yourself.”

Prioritize sleep

Even without the added anxiety of the coronavirus, people with migraine are two to eight times more likely than the general public to experience sleep issues. Yet a lack of sleep can increase stress as well as levels of proteins like CGRP that trigger the pain associated with migraine. To help ensure you get enough shuteye, stick to a consistent bed time and wake time. This can be more challenging if you’re sheltering in place and don’t have to follow as strict as a schedule as usual.

Another sleep hygiene tip: “Avoid any screen time two to three hours before bed: no iPhones, iPads, computers, or TV,” says Dr. Estemalik. “This will help you shut off your brain from getting more and more information.”

Find a relaxation strategy that works for you

Added stress from the coronavirus and shelter-in-place circumstances like working from home and homeschooling kids can “disrupt your internal anxiety, or flight-or-fight response,” says Dr. Diamond. “It’s important to recognize this and take action.” Here are a few suggestions:

  • Get regular exercise (if it doesn’t trigger your migraine)
  • Practice mindfulness, meditation, deep breathing, or yoga
  • Find quiet time by reading a book, soaking in a bath, or taking a walk

For more advice about managing your mental health at this time, check out these resources from clinical psychologist Laurie Ferguson, PhD.

Schedule regular breaks

Many of us are now working from home right now, which means spending most of our days sitting in front of computers or smartphones. “The light from these devices can produce migraine for many or exacerbate sensitivity to light if you’re in the middle of a migraine attack,” says Dr. Kuruvilla.

Taking breaks can help with light sensitivity as well as stiffness from being sedentary. Dr. Diamond recommends putting a sticky note on your computer to remind yourself to take breaks, such as Stretch, Breathe, Relax, Take a Break. Doing some meditation or deep diaphragmatic breathing during your breaks can help, too.

Seek out quiet spaces

Being at home with your entire family during the coronavirus likely means less quiet time and more loud noises (screaming kids and blaring televisions) that can trigger migraine and increase stress.

If possible, carve out some time during the day to retreat to a noise-free zone in your home (or outside). Another option is to invest in good pair of noise-cancelling headphones, or pop in some earbuds and listen to some soothing music or a guided meditation. 

Consider certain vitamins and supplements

Dr. Diamond, Dr. Kuruvilla, and Dr. Estemalik say the following supplements may be associated with reduced headache and migraine frequency:

  • Coenzyme Q10 (CoQ10), which is found in foods like oily fish (salmon and tuna), organ meats (liver), and whole grains
  • Magnesium, which is found in dark chocolate, avocado, nuts, legumes, tofu, bananas, and leafy greens
  • Riboflavin (vitamin B-2), which is found in foods like lean meats, eggs, legumes, nuts, green leafy vegetables, dairy products, milk, and fortified breads and cereal

Ask your neurologist if these vitamins or supplements might help you. You should also ask about the appropriate dose, whether they could interact with any medications you take, and any side effects to be aware of. For instance, Dr. Kuruvilla notes that magnesium can cause diarrhea or upset stomach and riboflavin cause your urine to turn orange. 

Stick with a migraine-friendly diet

Migraine food triggers are very individual. Some people can be very sensitive to certain foods and others don’t find a strong correlation between their diet and migraine attacks. If you suspect certain foods can be a culprit for you — such as artificial sweeteners, nitrates, or monosodium glutamate (MSG) — it’s important to continue to avoid them.

If you haven’t ever kept a migraine trigger diary, try it for a few days or weeks and see if it is useful for you. Here is a template you can print from the National Headache Foundation.

Eat regularly  

You may be less likely to eat regular meals if you’re home all day, but skipping meals or having an inconsistent eating schedule can be a big migraine trigger for some people. “The migraine brain likes things regular,” says Dr. Diamond. Waiting too long between meals can trigger migraine or cause more severe headache due to low blood sugar levels.

Stay hydrated

It seems simple, but taking sips of water throughout the day may keep stress and migraine at bay. One study of migraine patients published in the journal Neurology found that increasing your water intake by four cups a day was enough to decrease the intensity of a headache.

Fill up your favorite water bottler (or splurge on a new one) and keep it close by so you can keep your body hydrated.

Watch your alcohol intake

Avoiding alcohol is key for many people with migraine. In fact, alcoholic drinks are a trigger for a third of patients with migraine, according to a recent review published in the Journal of Neurosciences in Rural Practice. “An increase in alcohol consumption can also increase migraine frequency, as well as cause sleep fragmentation, which is when you wake up more often in the middle of the night,” says Dr. Estemalik.

Curb your caffeine intake

While some patients swear that caffeine keeps migraine away (it is an ingredient in the headache medicine Excedrin, after all), Dr. Kuruvilla recommends watching your caffeine consumption. Aim to drink no more than two small cups of coffee per day (or 200 mg).

“It is tempting to overuse caffeine in hopes that it will alleviate pain, but overuse has been linked to worsening migraine,” she explains.

Sniff some aromatherapy

Essential oils like peppermint, rosemary, lavender, chamomile, and eucalyptus, have been touted for soothing stress and easing headache pain. Our experts warn to steer clear of essential oils, however, if smell is a trigger for you. Also keep in mind that they’re not monitored by the FDA for purity, quality, or safety, so it’s important to vet the brand before buying. Ask your doctor about using essential oils at your next telehealth visit.

Try a green light device

Some of Dr. Diamond’s patients with migraine and mood disorders have been using green light technology via the Allay Lamp, invented by Harvard Medical School Professor Rami Burstein. It uses a very narrow calming band of green light to soothe your eyes and brain during migraine. This is especially helpful for people with migraine who have light sensitivity, or photophobia. Unlike red, blue, and yellow lights, green light is less likely to aggravate migraine and may decrease the intensity of the headache.

Try a neuromodulator device

These advanced medical tools have been found to enhance or suppress the nervous system, which may help stop attacks that are underway or prevent them in the first place. Dr. Diamond’s patients have used Nerivio Migra, which is an arm band that sends pulses to the brain to block pain signals. Cefaly and gammaCore are other examples of neuromodulator devices for migraine. Ask your health care provider about affordable options for you.

The current pandemic is stressful enough without having to worry about more headache days. Pay attention to those triggers, practice self-care, and do your best to prioritize your physical and mental health so you can feel your best during these unprecedented times.

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How to Use Essential Oils to Manage Migraine. Association of Migraine Disorders. https://www.migrainedisorders.org/how-to-use-essential-oils-to-manage-migraine.

Interview with Deena Kuruvilla, MD, assistant professor of neurology at Yale School of Medicine in New Haven, Connecticut

Interview with Enmad Estemalik, MD, MBA, section head for headache and facial pain at the Center for Neurological Restoration at the Cleveland Clinic in Ohio

Interview with Merle L. Diamond, MD, president and managing director of Diamond Headache Clinic in Chicago

Loder E, et al. The 2012 AHS/AAN Guidelines for Prevention of Episodic Migraine: A Summary and Comparison with Other Recent Clinical Practice Guidelines. Headache: The Journal of Head and Face Pain. June 2012. Doi: https://doi.org/10.1111/j.1526-4610.2012.02185.x.

Neuromodulation for migraine treatment: An overview. American Migraine Foundation. https://americanmigrainefoundation.org/resource-library/neuromodulation-for-migraine-treatment.

Migraine and Diet. American Migraine Foundation. https://americanmigrainefoundation.org/resource-library/migraine-and-diet.

Panconesi A. Alcohol-Induced Headaches: Evidence for a Central Mechanism? Journal of Neurosciences in Rural Practice. April-June 2016. Doi: https://doi.org/10.4103/0976-3147.178654.

Sleep Disorders and Headache. American Migraine Foundation. https://americanmigrainefoundation.org/resource-library/sleep.

Supplements and Herbs. The Migraine Trust. https://www.migrainetrust.org/living-with-migraine/treatments/supplements-and-herbs.

Wober C, et al. Chapter 12 Triggers of migraine and tension-type headache. Handbook of Clinical Neurology. 2010. doi: https://doi.org/10.1016/S0072-9752(10)97012-7.

Living with Stage 4 Lung Cancer During the Coronavirus Pandemic: ‘I’m Scared to Break Out of My Bubble’

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Lung Cancer During COVID-19 Bill Westlake

One evening in early April, after feeling a bit “off” for much of the day, Bill Westlake decided to take his temperature. It was 100.4 °F.

Under normal circumstances, a low-grade fever might not be especially alarming, but these were not normal times. Coronavirus was spreading across the nation, and although Bill and his family had been self-quarantining since early March, he wasn’t taking any chances. A stage 4 lung cancer patient, he knew that if he were to develop coronavirus he could be in grave danger.

“We were about to sit down to dinner, and my wife immediately went into emergency mode. She sent me upstairs, told me she’d bring me food and liquids, and started wiping down the whole house. I called my oncologist, who fortunately picked up the phone. She told me she was putting me on a list that would get me into the emergency room quickly and that I should go there in the morning to get tested for COVID-19,” he recalls.

Thanks to the oncologist putting Bill on that list, he did in fact get promptly ushered into a private area in the ER. But just walking through the door to the hospital felt risky. “I passed sick people in the ER, and I had to hold a pen and sign in,” he says. He wondered whether he’d have to isolate himself from the rest of his family while waiting for his test results to come back, or whether the hospital might admit him.

Bill ended up getting lucky, at least in this instance. The hospital had just received a batch of rapid tests the day before, so he was able to find out in 20 minutes that he did not have COVID-19.

But he still spent six hours in the hospital while a doctor and physician assistant examined him and ran tests. Some discomfort in the right side of his stomach and a CT scan led them to discover that he had diverticulitis, an infection of a small pouch protruding from the colon. He was sent home with antibiotics.

“I came home, threw away my mask, and changed all of my clothes,” he says.

The relief on his wife’s face was immense. “It meant we could go back to ‘quarantine as usual,'” says Bill. Still, for the next few weeks he worried that there was a chance he might have caught the virus while at the ER.

An Ongoing Challenge

It’s now May, and Bill is pleased to report that his trip to the ER didn’t result in him developing coronavirus. Yet he remains concerned about his vulnerability to COVID-19 in general.

Before the pandemic started, he traveled twice a month for his job in the automotive industry and his wife was working as a teacher in a school. Eventually they will have to leave the relatively safe confines of their home, and Bill is worried that this may need to occur well before there is a vaccine on the market.

As a lung cancer patient, breaking out of this bubble would be a gamble.

Bill learned that he had lung cancer in July 2017. He didn’t have any of the typical symptoms, such as a persistent cough or overwhelming fatigue. He didn’t have any lung cancer risk factors, either: He’s not a smoker, and as far as he knows he hasn’t been exposed to high levels of radon or asbestos or other carcinogenic compounds.

So how did he get diagnosed with lung cancer?

Bill happens to see a primary care doctor who does a chest X-ray as part of an annual physical for all patients. The doctor admits that such widespread screening of patients without risk factors is not recommended by any major medical organization, but says that this routine enables him to occasionally catch lung cancer in younger non-smokers. Bill turned out to be one of them.

Bill was diagnosed with stage 4 non-small cell lung cancer at the age of 51. Most people who get that diagnosis immediately start chemotherapy or radiation, but Bill decided to hold off on treatment until he could get a second opinion. The second oncologist ordered tests to check for genetic mutations, which revealed that his cancer was ALK-positive. With that information in hand, he was able to start treatment with a TKI (tyrosine kinase inhibitor) medication that targets this specific genetic mutation.

“I take eight pills a day, and they inhibit my cancer from growing,” says Bill. “But cancer is smart; eventually it will sub-mutate” and a different treatment will be necessary. He expects that chemotherapy and/or radiation will one day become unavoidable.

Extra Precautions for Managing Lung Cancer in the Age of Coronavirus

When the pandemic first hit, the first thing Bill did was contact his pharmacy and health insurance company to find out if he could obtain a 90-day supply of his medication. It turned out to be a struggle.

“I had to advocate with my pharmacy until we eventually got approval” from the insurance company, he says.

The main disruption to his care so far has to do with monitoring. He normally gets a CT scan and MRI every three months to find out whether his cancer has spread.

“I had scans in January, pre-COVID, and I was scheduled to go again at the beginning of April,” he says. “I called the imaging center to learn about their protocol [during coronavirus], and I did not like the answer.” He says the office was asking patients to walk in, sign a form indicating whether they have a fever or other signs of coronavirus, and only then are they taking those who might be infected down a corridor and away from the rest of the patients in the waiting room.

After consulting with his oncologist, Bill decided to postpone his next round of imaging tests for a few months. But he knows that other lung cancer patients who currently have symptoms or are just starting a treatment do not have that option. As an active member of ALK Positive, a support group for lung cancer patients who carry the same genetic mutation he does, he hears many stories about the extreme measures some members are taking during the pandemic.

“Some are driving up to a health center, putting a mask and gloves on, and bringing their own [disinfectant] wipes with them. They’re only taking the mask off during the MRI and are taking it upon themselves to wiping down all the equipment. When they come home after they’re undressing at the door and putting all their clothes right into the wash.”

Bill says that he and many members of ALK Positive are relying heavily on information from LUNGevity, a non-profit focused on lung cancer research, education, and support, to guide them during this time. But he adds that others beyond the cancer community are going to have to do more to balance flattening the curve with the need to reopen the economy. Mandating masks in public places is one move that he believes would go a long way.

Bill lives in Georgia, and the governor has already begun reopening businesses including hair salons, restaurants, and even bowling alleys. Bill, of course, does not plan to visit any of these places in the near future. But he says he might feel differently if everyone was required to wear a mask.

“If I knew I could go somewhere with a mask on and all the other patrons and the business owners had masks on I would be OK with it,” he says, noting that he would continue with other precautions like diligent hand washing.  “Let’s get this economy going, but let’s all wear a mask to do it. Everyone should have that responsibility.”

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CreakyJoints Premieres “Joint Effort,” a Short Film to Highlight One Young Woman’s Battle with Juvenile Idiopathic Arthritis

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

Film Kicks Off Arthritis Awareness Month

UPPER NYACK, NY (May 1, 2020) – CreakyJoints®, the digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation, today premiered a new short film titled “Joint Effort,” produced by filmmaker Zeppelin Zeerip, founder of Field Work Creative, about his younger sister Zoe, 23, who was diagnosed with juvenile idiopathic arthritis (JIA) at age thirteen.  Using black and white images to demonstrate the pain and challenges Zoe faced as a child learning to manage JIA, the video raises awareness during May’s Arthritis Awareness Month of a chronic illness that impacts an estimated 300,000 children in the United States.

Joint Effort includes Zoe Zeerip reciting a poem written by Marialyce Zeerip, her mother, titled Made to Move. Referencing the onset of her arthritis, Zoe Zeerip says, “I was made to move. A force of nature. Swift, powerful, determined. Fighting forward, relentless…until…You arrived. No hesitation in your step. No intention to wait.”

“Joint Effort is a powerful, thoughtful exploration of how it feels to be diagnosed with a serious and lifelong condition like arthritis,” said Seth D. Ginsberg, president and co-founder of CreakyJoints and the Global Healthy Living Foundation who was also diagnosed with arthritis at 13.

“Arthritis Awareness Month is the perfect time to share this video because it will generate impassioned dialogue among members of our patient communities as they relate to Zeppelin’s film and Zoe’s story as she triumphs over pain and celebrates her ability to move and be free.”

You Can Be Better Than Fine

The U.S. Centers for Disease Control (CDC) estimates that 22.7 percent, or 54.4 million U.S. adults, have doctor-diagnosed arthritis. Although arthritis prevalence increases with age, it is common for children to be diagnosed with JIA if they experience symptoms such as joint pain, swelling, fever, stiffness, rash, fatigue, loss of appetite, inflammation of the eye, and difficulty with daily living activities such as walking, dressing, and playing. The overall treatment goal is to control symptoms, prevent joint damage, and maintain function.

Exemplifying the 2020 CreakyJoints theme for Arthritis Awareness Month, “When ‘Fine’ is Not Fine,”  Zoe Zeerip spent the last decade learning to not only manage her JIA but thrive. Despite needing two weekly shots and other prescriptions to manage her pain and other symptoms, she is an active mountain and road biker, a Protect Our Winters Field Representative, and master’s candidate at the University of York. She is based in Grand Rapids, MI.

“Watching Zoe silently cope with arthritis for over a decade, without even some of her closest friends knowing she had the disease, made me want to share her story because I’ve witnessed her overcome any challenge that arthritis put in her path,” said filmmaker Zeerip. “Arthritis isn’t something that needs to be taken on alone. I hope our film and her story resonates with the arthritis community and inspires others to live an active life despite an arthritis diagnosis.”

To watch “Joint Effort” visit www.creakyjoints.org/jointeffort

To learn more about juvenile idiopathic arthritis and all other forms of arthritis visit www.CreakyJoints.org

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels @Creakyjoints on Twitter and https://www.facebook.com/creakyjoints on Facebook, our website www.CreakyJoints.org, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org) with nearly 30,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.

I’m a 35-Year-Old Mother with Stage 4 Colon Cancer. The Coronavirus Pandemic Has Postponed the Clinical Trial That Could Save My Life.

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Colon Cancer During Coronavirus Anna Razhova

My name is Anna. I am 35 years old. Before February 15, 2018, I was just like everyone else in the world.

I thought it would be a casual doctor’s appointment during my lunch break. I would be told that my colonoscopy was clear. Worst-case scenario, I would get some prescriptions to make my symptoms go away. How could anything really be wrong with me when I was always healthy, never had a surgery, barely had any colds, and had just delivered a healthy baby girl?

But then the nurse walked in and said, “Oh my goodness, are you here by yourself? You poor baby.”

My heart dropped and I felt blood rushing to my head. I started drawing something in my notebook to help calm myself. I have to slow down. She is probably just being dramatic.

But then the oncologist came in and went through a speech that he had probably delivered hundreds and hundreds of times.

Just like that, I became a stage 4 colon cancer patient — with a 3-month-old infant.

I was in disbelief. Stage 4? Wait, isn’t stage 4 the very last stage? Yes. Not only that, it looks like I’ve had colon cancer for a while. I was given six to eight months to live with no treatment and one to two years with treatment because my condition was so far gone. My only thought was that my daughter won’t remember me. I might never see her walk or speak. I will be a stranger in photographs while I am feeling and looking my worst.

Adjusting to Life with Cancer

I was back to living like a child again, unable to work or take care of my infant daughter. I attended countless hospital visits. I needed my parents. So much for a strong, independent, driven, I-can-do-anything-and-be-anyone woman. I just wanted to sleep.

I became a paranoid germaphobe with limited guests in the house, constant hand washing, hand sanitizers, masks, gloves. Flu season became my stay-at-home-and-hide-from-everyone season.

Social butterfly I was no more. I actually didn’t know who I was anymore — it all depended on how I feel that day; better yet, that minute.

I didn’t know how to function in this new body. I wanted to run with my daughter, but wait — I was always out of breath, tired, in need of a nap. This body didn’t match who I was in my mind.

I was scared of my own daughter when she went to childcare — those kids love all that dirt and mess. I was terrified of her passing germs on to me. Learning how to function in the real world as a stage 4 cancer patient took a full year of adjusting.

Enter the Coronavirus to Further Rock My World

Bam — just about two years after I got my terminal cancer diagnosis came another hard-to-process, lifechanging event.

All of a sudden, my weird hospital masks and paranoid gloves became our new normal. I fit in now! Enter social distancing, no handshaking or hugging, and new, cool, trendy handwashing techniques. My everyday life for the past two years had now become everyone’s life.

COVID-19 took over my social media, TV, texts, emails, and phone calls. I almost forgot that I had cancer. (Wait… Do I still have cancer, or have I just been training for this pandemic all along?)

Reality check: The pandemic just added a whole other set of things to worry about. The demons and fears that I conquered over the last two years were back. I started reliving my life right after diagnosis all over again, that nightmare.

The fear, paranoia, unknown, germs… oh, those darn germs. Back in my safe shell I went, hiding from everyone. Sleepless nights. What would get me first: COVID-19 or cancer?

Feeling Sick: Was It Cancer or Coronavirus?

During the first week of quarantine, I didn’t feel well, to put it mildly. Sweating, fever, vomiting, chills, loss of appetite, sleepless nights.

Was it cancer? Was it side effects of my cancer drugs? Was it COVID-19? I didn’t know. The symptoms and side effects of all three were so similar. I was in bed for days dealing with it all. The alternative of leaving the house and possibly catching the virus (if I didn’t yet have it) was even scarier than my symptoms.

After four days of being sick my family decided it was time for me to go to the ER. I got tested for the virus but wouldn’t know the results for four days so I was admitted due to my coronavirus-like symptoms. I was isolated for eight days. Nurses and doctors followed the protocol as if I had the virus. Four days after my admission, I was told that the test was negative, whew! But why was I so sick? I was tested again to make sure that the test was accurate. Still negative.

Pneumonia-like infection was my official diagnosis. I was given fluids and tons of antibiotics to treat pneumonia, but it didn’t feel like pneumonia. I was so confused. I don’t know or care anymore, I thought. Just make me better and get me out of this virus center.

A New Shot at Hope

All of my first-line cancer treatments stopped working in October 2019, a year and a half after my diagnosis. My body really hated chemotherapy and radiation. Unfortunately, a rare genetic mutation and the status of my health prevented me from qualifying for most of the available clinical trials — the only Hail Mary left to save my life.

I always thought I was special and different, but this wasn’t what I meant. Luckily, though, I found a doctor who believed in me and who gave me hope. He found a trial and I qualified. I was the first one in line in the waiting list. The timing was perfect.

Is this real? I thought. Let’s go! Now or never!

Clinical trials are more involved than standard cancer treatment, which typically include combinations of radiation, chemotherapy, surgery, and already approved drug therapies. My particular clinical trial is for a form of immunotherapy, a type of medication that activates your immune system to help your body fight the cancer.

I felt the universe was protecting me and watching over me. For the first time, I allowed myself to hope that my life could not only be prolonged, but that I could be cured.

The trial was scheduled to start on a Monday March 16, 2020. But on Friday, March 13 — how ironic — I got the dreadful call. My trial had been postponed indefinitely because only urgent hospitalizations were being allowed until further notice.

The clinical trial process involves many hospital departments — it’s a health production. When the hospital’s departments are not operating as usual, clinical trials and other elective surgeries and treatments are among the first to be postponed.

I hung up. Speechless, crying, hyperventilating, I start spinning out of control. How can my life not be an urgent matter? I am not dead yet, people. I matter just as much as anyone else.

A clinical trial for cancer treatment is often your last lifeline when everything else fails. This is why it was so soul crushing for my trial to be delayed. The news felt like a death sentence.

Would I even be healthy enough to continue to qualify for the trial once the world goes back to its new normal? My only hope was that a very last drug I was prescribed would sustain me until this world health tornado was over.

Before You Complain About Social Distancing, Consider This

I’ve been fighting so hard and so long. When I was first diagnosed, I vowed to myself that I would see my daughter get on her very first school bus ride. I went to over a dozen hospitals, saw countless number of doctors, went through every medical treatment. I have done it all. I would do it all again.

But to spend almost a year finding a clinical trial that might save your life and then be unable to grab that lifeline doesn’t seem fair. It feel unconstitutional, un-American. This isn’t us, this isn’t giving a fair chance for everyone to fight for their life.

I am immunocompromised and I am sick of being stuck at home. I can only imagine how everyone else feels. Not breaking the rules of social distancing is hard, I know. We all want to run away from the four walls we have been trapped within for the past two months. But then I think, how would I feel if I got sick? How would I feel explaining to my daughter that it was just one time that I snuck out because I needed to escape.

How would you feel if you got someone you loved sick and they didn’t make it? Would that one time of not doing the right thing be worth it? So I sit myself down and remember, at least I’m safe and it can always be worse. I have to set the example and do the right thing.

I see my friends’ social media feeds, but I stopped talking to the majority of them. I have been a broken record asking people to do the right thing and stay home. But I know they need money, they have to work. I understand, yet I am bitter.

People make irresponsible choices and then people like me suffer because this virus isn’t going away and I remain stuck with no way out.

They say that they are healthy enough, lucky enough, and strong enough. They never even catch colds. If they were to get the coronavirus, they would bounce back.

Yes, I think to myself, that’s exactly what I thought when I walked into my very first oncological consultation. I wish people understood my anger now, which is the same anger I felt after being diagnosed with my cancer. As more parts of the country start to reopen, people are suggesting that high-risk people just stay home. As if that’s the solution to our problems?

How do we have surgeries? How do we start clinical trials? How do we save our own lives when the world is not safe enough to let us do that?

Living with Pink Glasses On

I don’t know the current status of my cancer. My routine scans used to be every two months; it has been three since my last one. The cancer center where I receive treatment had an early outbreak, with at least one employee sick with COVID-19. Do I get my scan and bloodwork and possibly expose myself to coronavirus? I trust no one because this virus is a monster.

For now I have been staying at home and living with my pink glasses on, hoping that my cancer hasn’t spread.

About the trial, I finally got an update last week. Another four to eight weeks, hopefully, until it can begin. I am hoping for the best, but I have to be realistic. Every day I worry whether something will get me soon. What will it be first: COVID-19 or cancer?

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Are People Are Dying From COVID-19 Because They Are Black in America? An African-American Cancer Survivor Speaks Out

African-Americans and COVID-19

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Let’s start with the numbers — why not? Around the U.S., African-Americans account for around one in three known cases of COVID-19, even though we comprise only around 13 percent of the population. When you go deeper and look at specific areas, it’s even worse.  In Dekalb County in Georgia —the metro Atlanta area — the top five zip codes for known cases of COVID-19 are areas with the highest concentration of African-Americans, NPR recently reported. Earlier this month, the New York Times revealed that the coronavirus is killing black and Latino people in New York City at twice the rate of white people. In Chicago and Louisiana, African-Americans account for about 70 percent of coronavirus deaths but make up just 30 percent of the population.

Putting it plainly, we are dying the most. The rate of COVID-19 deaths among black people dwarfs the death rate for other communities.

But I want to move past the numbers, as awful and sobering as they are.

First of all, we’re human people. It’s a fact that always seems to get lost in these discussions. If others remembered that, we wouldn’t be talking about this, signing petitions, writing articles and letters, or having this problem to start with — we’d be in the middle of fixing the problem.

Because who sees this happening to their fellow humans and just looks away? Or makes excuses?

Second, this virus has exposed inequality in our health care system and in our society that is staring us in the face in the middle of a worldwide crisis. It should be impossible to ignore. It has shown how this unequal system can hurt all of us.

Third — and this is most important — we have a unique chance to show once and for all whether this is inevitable or fixable. I wouldn’t be writing this if I didn’t hope for the latter.

Staring down this issue raises some uneasy questions. We’ve long known that health care disparities have existed along racial lines. But the COVID-19 pandemic is shining a spotlight on it. I believe it is giving us all a chance to pay attention to these questions. They need answers. Ignoring them or sending good vibes, or thoughts and prayers, isn’t going to fix anything. (If you don’t believe me, try paying a bill with thoughts and prayers. Let me know how it works out.)

And yes, some of these are terrible questions, ones that no one wants to spend time thinking about. Yet, ignoring them won’t make them go away.

The Terrible Questions

Is it possible that some people in African-American communities were less careful with social distancing behaviors because of early rumors and misinformation that the coronavirus didn’t affect our community? If so, who started this rumor? Why did get more traction than the other rumor that always comes up — that xyz virus was created in a lab to target certain populations?

Why isn’t this of more concern to people who want to stop the virus from spreading?

Are we dying more because more of us are fast food workers, grocery cashiers, caregivers, nurses and other health care workers, disabled, working class, and working poor? Is it because we take subways and on public transportation more?

We’ve got to revisit community spread. If we’re the working poor and middle class essential workers, that means we’re coming into contact with more potentially infected people. We tend to be the ones doing inventory in the grocery store. We’re often the people at the register, serving food, handing over Starbucks orders, greeting you at Walmart.

What happens when we all get sick or die out?

And then there’s the terrible question of why didn’t any anybody wants to talk to us before?

Because we in the black community have been screaming this for decades. For centuries, for that matter.

Breaking It Down Further

We need to look at sub-populations within the black community and address those needs too.

Women have been talking about how we’re not taking seriously when we have pain.

Disabled and chronically ill people have been talking about how long it takes to get a diagnosis. We have underlying health conditions. They’re not caught in time and this complicates our health care.

Poor people talk about how we can’t go to the doctor on a regular basis because we don’t have the money for copays or we just plain can’t afford decent care.

We Need a Serious, Close Look at Our Health Care System

We have needed this for a while. The Affordable Care Act was a step in the right direction but we need something better. Think about this: Certain states are not going to accept the Medicaid option and continue to dismantle it, even in these perilous times when your grocery worker not being able to afford a doctor might kill you.

We need to look at how and why our health care system has failed, and continues to fail, our communities. What could have been done to prevent this? We can we prevent in the future?

We need to make sure people don’t die simply because they are black. In America. In 2020.

Sign the Letter

I and other patient leaders worked with the Global Healthy Living Foundation to develop a sign-on letter about COVID-19 health disparities. I believe is important for to sign for anyone who is concerned about how COVID-19 is being handled, for any reason.

Everyone should want to sign this letter.

If you are convinced these disparities are NOT because people are black in America, here’s your chance to demand we find out the real reason and fix it.

If you are convinced these disparities ARE because they were Black in America, here’s your chance to demand we find out the real reason and fix it.

Why I Signed It

I didn’t ever used to sign letters or online petitions. I’d wonder how effective they were, who they would go to, if they would be read. In my early days as an activist, we were working with paper, so you could physically see that the impact of getting this huge packet with thousands of names was going to be intimidating.

I would doubt whether they’d have a similar presence delivered by email.

But then President Obama’s administration added an online petitioning element to the White House website, which went directly to them, and they took them seriously.

And it made me rethink many aspects of online activism. The highest office in the land was using those tools to listen to its constituents. Maybe online activism is powerful than I had given it credit for. Or did people who called it “slacktivism” just want to squash our abilities to use our voices before we became too powerful?

So I started looking for two things when I signed letters or petitions.

First, could I trust the source that created the petition to see this type of online activism all the way to the end?  Second, do they care as much as I do?

And really, that’s the big difference: working with people you know, who have a vested interest in the same things as you, people whom can trust not only to listen and take action, but to follow up and do something.

From the time I started working with the people behind the Global Healthy Living Foundation, I saw they were people of action. I made an idle suggestion about something and they mentioned it at their next Twitter event. I made a gentle marketing suggestion and they adopted it.

The real test for me was talking about an issue as a black disabled woman. I’m used to having my issues ignored. Several of us spoke on the issue within a short time frame. I expected nothing to happen. Instead this letter went up, very quickly. And I want to support that.

We in the online disability community point out how much further we can go together if we take turns working on everyone’s issues — and this is a great example of that.

It’s time we all speak up and demand an end to health care disparities in this country. Because if we are truly “all in this together” — as all the COVID-19 public health messaging would have you believe — we need to identify, examine, and solve this problem together.

To get involved, add your name to this letter to demand more investigation and publicity around COVID-19 health disparities.

Get Free Coronavirus Support for Chronic Illness Patients

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La fundación sin fines de lucro, Global Healthy Living Foundation, lanza proyecto de investigación para recolectar información sobre el impacto del COVID-19 en pacientes autoinmunes

PARA PUBLICACIÓN INMEDIATA

CONTACTO CON LOS MEDIOS

Jessica Daitch

Teléfono: 917-816-6712

Correo electrónico: [email protected]

CreakyJoints junto con instituciones de investigación en Estados Unidos y organizaciones colaboradoras con registros de pacientes estudiaran los comportamientos y las preocupaciones de los pacientes con condiciones autoinmunes y crónicas durante la crisis del COVID-19

UPPER NYACK, NY (April 22, 2020) – La Fundación Global Healthy Living Foundation (GHLF), CreakyJoints® y CreakyJoints Español®, sus comunidades digitales de pacientes para las personas con todo tipo de artritis, anunciaron el lanzamiento del Proyecto Autoinmune COVID-19. Este es un estudio innovador que es longitudinal para pacientes con Esclerosis Múltiple, Artritis, Enfermedad de Crohn y Colitis Ulcerosa, y Vasculitis Sistémica que creará un seguimiento del impacto del COVID-19 en pacientes que viven con estas condiciones. El Proyecto será dirigido por CreakyJoints y se implementara a través de su registro de investigación, ArthritisPower®, que cuenta con 30,000 pacientes. También, el estudio se ampliará en asociación con otros tres grupos de pacientes, IBD Partners, iConquerMS™, y Vasculitis Patient-Powered Research Network. Los cuatro grupos, incluyendo ArthritisPower, se representan colectivamente como el Colaborativo de Investigación Autoinmune (ARC), una asociación inicialmente formada y auspiciada por el Patient-Centered Outcomes Research Institute (PCORI).

A diferencia de una encuesta singular gestionada por médicos e investigadores, el Proyecto Autoinmune COVID-19 continuamente examinará las preocupaciones y comportamientos de los pacientes durante la pandemia, también se enfocará en recolectar información sobre problemas respiratorios y pruebas relacionadas para construir una imagen del impacto del COVID-19 con relación al tiempo. Este proyecto es una extensión de un proyecto existente auspiciado por Los Institutos Nacionales de Salud de Estados Unidos (National Institutes of Health, NIH), que ha sido validada en ingles y en español por una junta de revisión institucional independiente (IRB) de manera que permitirá colaboración con cualquier paciente y organización interesada.

“Las encuestas de pacientes administradas en intervalos regulares nos permitirán estudiar síntomas relacionados a trastornos respiratorios, las experiencias del COVID-19 en relación a pruebas, visitas médicas utilizando la tele salud, analizaremos las preocupaciones y opciones con respecto a la terapia inmunosupresora, al igual veremos las fuentes preferidas de los pacientes para información sobre el COVID-19 ,” nos comenta la Dra. Shilpa Venkatachalam, PhD., que es la investigadora principal del estudio y Directora Asociada de Investigación Centrada en el Paciente para CreakyJoints y ArthritisPower. “Necesitamos información sobre el impacto del COVID-19 en pacientes con condiciones autoinmunes, reumáticas, y otras condiciones crónicas con el fin de proporcionar apoyo para la toma de decisiones en salud, sobre todo tomando en cuenta los riesgos asociados con una infección altamente transmisible para esta población vulnerable.”

“La intención de este estudio es hacer preguntas a los pacientes que solo ellos puedan contestar y que complementen las encuestas ya creadas y en circulación a médicos,” nos dice el Dr. Michael George, M.D., otro investigador principal del estudio y profesor en el Hospital de la Universidad de Pennsylvania. “Nuestro objetivo es ayudar a generar conocimiento que pueda informar a los médicos y políticos sobre la mejor manera de cuidar a esta población vulnerable de pacientes, especialmente durante un brote de enfermedad infecciosa.”

La experiencia de investigación centrada en el paciente producirá resultados rápidos

El Proyecto Autoinmune COVID-19 es parte de un esfuerzo dirigido por CreakyJoints y otras redes de investigación de pacientes para comprender la perspectiva y las experiencias únicas de los pacientes. Con la puesta en marcha de este proyecto, CreakyJoints sigue sus esfuerzos de ampliar su experiencia en la creación y desarrollo rápido de infraestructuras para los estudios de este tipo. Es importante mencionar que ArthritisPower, la red de investigación impulsada por pacientes lanzada hace cinco años por CreakyJoints, en colaboración con investigadores de la Universidad de Alabama en Birmingham, ha publicado resultados de varias investigaciones en publicaciones técnicas y presentado en reuniones medicas estadounidenses e internacionales.

Los datos recogidos en este estudio por ArthritisPower, junto con la colaboración de socios de investigación de otras condiciones, será recopilado y analizado para describir las experiencias, percepciones y preocupaciones de los pacientes encuestados. Como resultado de un lanzamiento interno, ya más de 2,000 participantes han sido registrados y han comenzado la participación en este estudio longitudinal. Los participantes que también son miembros del registro de ArthritisPower, podrán vincular los resultados con su registro de salud electrónico personal.

“CreakyJoints y sus socios de la comunidad reumatológica utilizaran los canales educativos ya bien establecidos para difundir los hallazgos de la investigación, al igual que a través de nuestro programa de apoyo gratuito, así como a otros investigadores, políticos, y proveedores de atención de salud,” dice Seth Ginsberg, Presidente y Co-Fundador de CreakyJoints. “Nuestra experiencia centrada en la investigación del paciente nos permite crear estudios de forma eficaz y relativamente rápida para mantener a la comunidad de pacientes bien informados.”

CreakyJoints y ArthritisPower se asociaran y colaboraran con otros grupos de pacientes de EE. UU. Y Canadá para aumentar la participación a largo plazo de el  Proyecto Autoinmune COVID-19. Un sitio web se ha creado, AutoimmuneCOVID.org, y mostrará resúmenes de resultados y dirigirá a los pacientes a información relevante y actualizaciones. A medida que avance el estudio, el sitio web también contará con un mapa de EE.UU. y Canadá que mostrará donde las personas con condiciones autoinmunes, reumáticas y otras condiciones crónicas han reportado síntomas de trastornos respiratorios (también cuales casos han sido confirmado por causa de COVID-19 y cuales no) usando geolocalización compartida por los pacientes. La investigación de el estudio longitudinal y observacional de grupo reclutará pacientes por correo electrónico, redes sociales, a través de un portal de pacientes y otras fuentes tales como registros de pacientes en línea como ArthritisPower y redes similares como las que forman parte del el Colaborativo de Investigación Autoinmune (ARC), que incluye Vasculitis Patient-Powered Research Network (VPPRN), Inflammatory Bowel Disease Partners (IBD Partners) y iConquerMS.

El Colaborativo de Investigación Autoinmune (ARC) se enfoca en avanzar la investigación de resultados centrados en el paciente y en la efectividad colaborativa y la investigación pragmática sobre condiciones autoinmunes e inflamatorias sistemáticas. ARC, anteriormente conocido como el Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG), fue inicialmente formado dentro de PCORnet®, la red nacional de investigación clínica centrada en el paciente. ARC se compone de cuatro redes de investigación impulsadas por el paciente (Patient-Powered Research Networks, PPRNs) que trabajan juntas para llevar a cabo una investigación centrada en el paciente con condiciones autoinmunes de adultos. Estas redes son el registro de investigación ArthritisPower®, IBD Partners, iConquerMS™ y  Vasculitis Patient-Powered Research Network. Anteriormente, cada una era un socio de la red en PCORnet® y su participación en el pasado en PCORnet fue respaldada a través de premios de financiación del Instituto de Investigación Centrada en el Paciente . Las redes individuales de ARC están apoyadas y coordinadas por las organizaciones de pacientes incluyendo Accelerated Cure Project, CreakyJoints, Crohn’s & Colitis Foundation, Vasculitis Foundation, e instituciones académicas afiliadas como la Universidad de Alabama en Birmingham , la Universidad de Carolina del Norte en Chapel Hill y la Universidad de Pennsylvania.

La Fundación Global Healthy Living Foundation (GHLF) es una organización sin fines de lucro 501 (c) (3) cuya misión es mejorar la calidad de vida de las personas que viven con enfermedades crónicas (como artritis, osteoporosis, migraña, psoriasis, enfermedad inflamatoria intestinal y enfermedades cardiovasculares) abogando por un mejor acceso a la atención médica a nivel comunitario, estatal y federal, y amplificando los esfuerzos de educación y concientización dentro de su marco de redes sociales. GHLF también es un firme defensor de las vacunas. La Fundación Global Healthy Living es la organización matriz de CreakyJoints®, la comunidad de artritis digital para millones de pacientes y cuidadores de artritis en todo el mundo que buscan educación, apoyo, activismo e investigación centrada en el paciente a través de ArthritisPower® (ArthritisPower.org), el primero Registro de investigación centrado en el paciente para afecciones cutáneas articulares, óseas e inflamatorias. GHLF también alberga PainSpot (PainSpot.org), una herramienta digital de evaluación de riesgos para afecciones y lesiones musculoesqueléticas. Visita www.GHLF.org para más información.