Genuine Support You Can Feel

“Thank you for letting me talk in words that I have a hard time saying out loud. I’m not in the mood to talk with my family or friends. I think I just want to be heard and to know I am not the only one who is going through this...”

sscIn my past posts for Treatment Diaires, I have written about kindred friendships and the art of delivering a cancer diagnosis. Today, I choose to write about the change I want to see in this world, in my lifetime.

 

myHeart, yourHands was borne out of a kindred friendship between two adult survivors of childhood cancers whose lives intersected at the corner of late effects, specifically heart failure: one due to chemotherapy and radiation; the other, radiaiton. Co-Founder, Judy Bode sought out someone whose heart had also failed duue to late effects of cancer treatment; someone who had undergone heart transplantation; someone who had lived to see the other side. Thus, our transplant center made the introduction and the rest is myHeart, yourHands history: one coming alongside another facing a similar late effect with the message you are NOT alone; I have walked this path. Now, allow me walk with you.

Late effects of cancer treatment is an ever evolving nonfictional story; late effects are impacting the lives of survivors THIS day, every day. Our organization is concerned that studies show that survivors are largely underinformed about the treatment they received to cure their cancer and the risk they now carry for late effect of those treamtents. In addition, we are concerned by the fact that the primary care providers of today are not adequately equipped due to a lacking in the medical training to care for survivors at risk for these late effects.

Late effects are side effects of cancer treatment that can occur months, years, even decades after treatment has ended. Late effects are a potential reality NOT a written-in-stone reality and it is often time fear lurking in the background seeking to keep survivors under-informed and ill-equipped . Let me be clear, the fear is real and completely normal [and] understandable.

You’ve no doubt heard the motivational quote:  “Be the change you want to see in the world.”

 I am the change I want to see in the world, IN my LIFEtime.

 I am more than a survivor who is well-versed in my treatment history and my personal risk for vaarious potential late effects.

I am a well person with a few chronic concerns, yet living LIFE, full of HOPE and expectation of FUTURE.

I am equipped to educate my primary care provider regarding my treatment-related risks and the recommended screenings.

I am a fierce and effective advocate on behalf of myself.

I am the exception NOT the rule.

 I am the change I want to see in the world.

 MHYH launched an IndieGoGo fundraising campaign two days ago to raise monies to be allocated towards a late effects documentary. We believe this documentary needs to be made. We believe that survivors NEED to step into the reality, the daily lives of survivors as they navigate the waters of late effects. In doing so, we believe that survivors will begin to do the knowledge regarding their potential for late effects; survivors will be empowered to live life boldly in the moment as opposed to living all the while waiting for, wondering if/when the carpet will be pulled out from under their feet.

MyHeart, yourHands can NOT accomplish this project alone, nor do we want to. We need your help to build a grassroots-spread-like-wildflowers movement among survivors, caregivers, family members, and friends who have been affected by cancer to carry this baton. Certainly, we would welcome large donations; however, what is most aligned with an organic movement is A LOT of individuals making small contributions. This makes each of us vested in the project and our collective future health and wellbeing.

We recognize that not everyone will be drawn to contribute financially to this cause. In that case, we would ask your assistance in helping to create a buzz around this campaign by tweeting the campaign, RTing our campaign tweets, and giving your networks the opportunity to share the campaign with their networks. Passion and the buzz factor are the critical elements of a crowdfunding, causeraising campaign.

The more people who are exposed to our campaign content, the more likely it is that our message regarding late effects will reach those individuals with whom this cause resonates prompting them to contribute financially.

If you’d like to formally join our campaign team, please let me know via email at sdzhappy@gmail.com. This will allow us to keep our finger on the pulse of the activity specific to our campaign.

Late effects are far from being a thing of the past: this I KNOW. Life amidst the reality of late effects; however, can be full of hope and future, if only survivors were adequately educated and fully equipped to be their own best advocate.

Contact us and let us know how you’d like to contribute to this campaign be it content and link sharing, a fundraising event, an email to family and friends or a tax deductible financial gift.

Stephanie Zimmerman is the executive director of myHeart, yourHands, a 501(c)(3) tax exempt organization, dedicated to educating and equipping survivors to dismantle their fears and do the knowledge of late effects.

Join us for Treatment Diaries weekly #treatdiarieschat on 9/3 at 8pm ET to learn more and follow us and BE the change YOU want to see among survivors:

  1. IndieGoGo [http://www.indiegogo.com/projects/second-second-chance]
  2. myHeart, yourHands on twitter @myHEARTyrHANDS [https://twitter.com/myHEARTyrHANDS]
  3. www.facebook.com/secondsecondchance
  4. Google + [https://plus.google.com/b/114777298382235456783/114777298382235456783/about]
  5. Vimeo [www.vimeo.com/myheartyourhands]

puzzelmouseThe Wall Lab at Harvard Medical School is just months away from completing a mobile system for rapid detection of autism and needs your help! Participate in this study to make a difference for children and families with developmental delays.

We are seeking caregivers of children, ages 14 months to 7 years old, with or without a diagnosis of a developmental delay. With your participation, we will be able to finish work on a tool that simplifies the process of detecting autism by bringing it closer to homes through natural home videos of the child in a social situation and straightforward parent questionnaires.

 

 

To participate in this study, you will need to:

1) Submit a short survey

You will be asked to complete ten questions about your child’s typical behavior.

2) Upload a 2-5 minute home video of your child at play

A birthday party, playing with friends, or a day at the park, should work wonderfully. If you are taking the survey using a mobile device, you can take a video then and there and directly upload it. If you do not have a video available, you may wish to take a video before you complete the survey. Alternatively, if you complete the survey and do not have a video available, we can email a link through which you may upload your video.

Through this beta phase of our research we hope to create a system that will reach families across the country and around the world, including families who do not have access to the medical infrastructure needed to diagnose developmental delays. The end goal is to help families get the attention their child needs in a matter of days.

This current beta phase will allow us to refine our tool to provide optimal information and value to families, and key data for doctors to make the right decision about diagnosis and therapy. Understanding and acknowledging the difference of a child’s behavior at home versus in a clinic is what drives our research to seek your participation to validate a faster screening approach for autism.

Visit https://puzzlemouse.hms.harvard.edu  to see how you can support this cause and facilitate access to a novel screening approach to the community.

Why Talking About Death Is Crucial

grief deathWhy is talking about the loss of a loved one vital to continuing your life after their death?

Your relationship with the person you lost holds 100% of what your life looks and feels like after their death. The loss of a professional acquaintance or distant cousin is experienced differently than the loss of a spouse or child. Again, different types of loss shape your life’s breath for weeks, months, years or decades.

How do you compare not walking your child down the aisle or not growing old with your spouse after all the hard work has been accomplished, to not seeing a distant cousin at an occasional Christmas?

Loss is never easy, but the degree in which we must pick up our pieces varies tremendously. There are some losses that recovery is not a word to be used. It is rather learning how to live in a world that is without them.

Therefore, talking about the pain — no matter what the degree, becomes vital to the process of surviving the depth in which you are swimming.

We are wounded by loss. We survive by leaning on love that is left for us in the world.

Look for it. Listen for it. Remain still and lean into it. Love causes our pain – love heals our pain.

Join us this week for our scheduled #treatdiarieschat via www.tweetchat.com on August, 13, 2013 at 8pm ET. Back by popular demand for her second time is our guest is Jean Wolfe Powers.  Jean is a psychotherapist who specializes in grief and trauma http://jeanwolfepowers.com/.  .


caregivingIn 2011 my husband had to have invasive brain surgery for trigeminal neuralgia, a little known facial pain condition he had been suffering from for 4 years. As an expat spouse with school-aged children and no family close by, our family went on a roller coaster ride through the chronic illness-surgery–recovery maze.
My blog is the silver lining that came from that experience. Through it I am looking to bring comfort by changing my readers’ everyday perspective and outlook on life.

 

I have learned that many people want to help when someone is in crisis or distress but not everyone knows how best to give comfort in the way it is needed. Through my blog Brainstorm one of my goals is to use my experiences as the primary caregiver, educator, counselor, hospice professional, spouse, parent and friend to demystify the role of effective caregiving, provide suggestions to help people help others effectively and laugh a little along the way!

 Here are five suggestions from one of my blog posts.

1. The most important thing you can do first, is to LISTEN, openly without judgment or interruption.

This action shows the person that their words and feelings matter and that you are there to comfort them, not to try to solve their problems.

2.  Listen carefully to their story and WHERE they are in the PROCESS of their challenge, illness or grief. This may give you clues as how to best help them.

3. Visit on THEIR time frame.

When someone is sick, is a caregiver or is grieving, time is very precious and precarious and there may only be small moments in the day when they can cope with a visit. If you say you are coming at 1:00 pm then making sure you are there on time and be mindful of how much time the person can handle you visiting.

4. If you want to bring a gift, try to check out what might be APPROPRIATE.

Although flowers and books are lovely, if the person has allergies or difficulty concentrating these may not be the best idea. Some freshly cut fruit or magazines might be alternatives.

5. Keep in REGULAR touch and FOLLOW THROUGH on your promises. 

When someone is going through challenging times, their world is turned inwards. All their energy is channeled towards getting through the day minute by minute. They may not have the energy to call you back, write an email or even send a text. But don’t let that stop you from checking in. High stress and low support can lead to great isolation and a message or visit from you can make all the difference..

In collaboration with Treatment Diaries Gilly is  thrilled to be able to discuss caregiving and bringing comfort. and also looks forward to raising awareness about trigeminal neuralgia.  Learn more about the author – Gilly Cannon by visiting her blog Brainstorm at http://gillycannon.blogspot.com and following her on Twitter @bringingcomfort.

Join us for our weekly #treatdiarieschat on www.Twitter.com to learn more and share your personal experience on 7/23/13 at 8pm ET.  In the meantime, join us at www.treatmentdiaries.com and learn through the words of others while privately sharing your personal experience.

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Michigan-based CureLauncher (http://www.curelauncher.com), the only organization that matches people to all enrolling clinical trials, today announced an exclusive partnership with Treatment Diaries a social but private network anonymously connecting individuals affected by similar illnesses through online health-related conversations captured in personal diaries.

Treatment Diaries members and visitors will be directed to http://www.curelauncher.com, where specially trained relationship managers help individuals find a clinical trial that may offer access to a new diagnostic test, treatment or rehabilitative approach.

Partnering with CureLauncher compliments our mission, said Amy Ohm, founder and CEO of Treatment Diaries. We work to connect people to support them through the treatment experience, and CureLauncher helps find people new treatments matching their unique goals and conditions. It is this personalized support from each of our organizations that empowers people.

The power of clinical trials. Nearly 200 million Americans have a chronic disease such as diabetes, heart disease, asthma or cancer. Less than five percent of them know where to find new treatments available in clinical trials according to the Center for Information & Study on Clinical Research Participation (CISCRP). Yet, some of Americas best medical care is available through these clinical trials.

“CureLauncher redefines the approach to clinical trials by putting people and their families first,” said David Fuehrer, CureLauncher President, who is also a two-time cancer survivor and active speaker and volunteer for various support communities.

We are thrilled to work with Treatment Diaries, said Fuehrer. We want to become a part of this strong community support to help as many people as we can.

About Treatment Diairies:
Treatment Diaries is a social network with complete privacy for those living with illness, newly diagnosed or caring for someone with a medical condition. Treatment Diaries was inspired by real stories of people living with various medical conditions, searching for a private place to share treatment options and the overwhelming desire to connect with others facing similar circumstances. Learn more at http://www.TreatmentDiaries.com.

About CureLauncher:
CureLauncher gives people the power and support to make a life-changing decision. Its patent-pending matching system helps people find treatment options that are aligned with their unique goals and conditions. Take Control. Know Your Options. Learn more at http://www.CureLauncher.com.

Join us 7/16 for #treatdiarieschat Cure Launcher and learn more about their exceptional approach and commitment to connecting patients to treatment solutions.

grief2The first myth:  The first year is the hardest.  In the first year, your body goes into a fog state.  With every first holiday, birthday, or trip to Wal-Mart, it is true that crying is endless at times. Sadness can become the go-to emotion.  The second year is grossly underestimated.  It is the year after you have survived the fog and are back in your body. This can be more painful.  You are really experiencing life without your spouse.  Your body is capable of feeling again with clarity.  The feeling of being without and the reality of lost life-plans feels clearer.  The second year is really the first year experienced in a sober way without the numbness.

The second myth:  People really want to know how you feel.  When you are asked, “How are you doing?,” if your answer isn’t “alright” or something that resembles “good,” the majority of the askers have no idea what to do.  Our friends and acquaintances mean well.  Loss is scary.  If you are doing well in life, it gives others permission not to feel.  Don’t take it personally.  Especially, try not to pretend you are happy to keep your friends.  If they care about you, they will understand.  If they can’t tolerate your pain, take care of yourself and give them space and time.  DO NOT COMFORT OTHERS.  Save your strength for yourself.  Understand that grief ebbs and flows so that you don’t feel stuck or wrong or sick for the depth of sadness you feel.  What is important is your capacity to learn coping skills for self-healing.

The third myth:  Your children will help normalize your life.  While this is somewhat true, the myth implies that your children’s lives have not changed to such a degree that they require extra, extra love and attention.  After the death of a parent, children tend to feel like they are balancing on stilts.  You are in charge of keeping them from falling and breaking.  For the most part, you are on call 24/7 for their needs.  This is a parental fact.  So although your children may be the reason to get up in the morning, your focus is around their mental health which can derail your ability to self-focus and self-soothe.

The fourth myth:  If you change your out-going voice mail  or keep your spouse’s email accounts open, or donate spouse’s clothes, etc., you will be disloyal.  Healing is dependent on caring for your heart.  Remember that the only person who truly knows your heart is you.  Ask yourself, how much of my loved one’s physical presence that was left behind do I need to heal or carry me at this time?  This must be a conversation that you have with yourself.  Your loyalty can only be questioned by you.  Loyalty and recovery go hand in hand.  Don’t forget that your love for your spouse is imprinted IN you.  Questioning your loyalty is questioning your love.  It is an evolution of your healing, never an assassination of your loyalty.  Think spectrum, not time frame.

The fifth myth:  If you feel happiness or joy, you have recovered.  The death of your spouse or anyone you love is not something that has a stamp, “Recovered.”  Regaining a full, healthy, loving life is a path you walk.  You will always carry your loved one in your DNA.  Finding joy in life is wonderful and CAN co-exist with any other feeling.

Join us 7/9/13 at 8pm ET for an hour long #treatdiarieschat via Twitter with Jean Wolfe Powers to discuss this very important topic.  You can learn more about Jean and her practice at http://jeanwolfepowers.com/therapy-counseling-westlake-village/.

mental health

Where do you go when you life is unraveling? Isolated, stigmatized and with a lack of options, often, people with mental illness are unsure. On May 28 at 8 pm EST, Koved Care, a psychiatric and elderly care management company, CEO Steve Horen will be participating in a Twitter chat to answer questions and provide the necessary resources one might need in order to successfully navigate their life and mental illness.

Some of the topics that will be discussed include; the importance of creating and maintaining a schedule, taking medication in accordance with doctors prescriptions and how to overcome and manage incidents that could act as a trigger for an episode. The twitter chat will also cover different medical treatments, and all the options available to keep your loved ones included in the treatment process. Steve hopes that this twitter chat will allow individuals to open up about their mental health issues and seek solutions to their problems in a relaxed environment.

Koved Care is a care management company that specializes in psychiatric, Addiction Recovery and Geriatric patient services. Koved Care provides specialized care suited to each individual so that he/she can get the most out of each day. The company believes that one can benefit from having a health care advocate who understands their disease processes, and can coordinate care in the most effective way. The main focus at Koved Care is always quality care, because the patient and their illness is the top priority. Each patient is assigned the same staff member over a long period of time, so that he/she may be familiar with their patients background and medical history and to prevent miscommunication between different Staff. Each staff member at Koved Care goes through an extensive background check, to ensure that each care provider hired at Koved Care has the required training and experience before being considered for a job with us.

 

 

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Sarcoma is a rare cancer that doesn’t get a lot of research money or attention. Here are some facts about sarcoma, which is commonly referred to as a “forgotten disease.”

 

  • There are two types. The first is soft tissue sarcoma and the second is bone sarcoma. There are 50+ sarcoma sub types  The areas that soft tissue sarcomas develop include deep skin tissues, joints, fat, muscles, nerves and blood vessels. Bone sarcomas develop in bone and cartilage.

 

  • According to the American Cancer Society, about 12,000, or 2% of all new cancers, are diagnosed in the United States each year as sarcoma with approximately 5,000 people expected to die from the disease each year.

 

  • Sarcoma is much more common in children. It represents 15% of all childhood cancers and about 1% of all adult cancers.

 

  • Rates of occurrence remain constant. From the early 1980′s to today, bone sarcoma and soft tissue sarcoma incidence rates have remained fairly steady. One notable difference is soft tissue sarcoma is more deadly. This could be due to the fact that a shortage of specific symptoms can postpone a soft tissue sarcoma diagnosis.

 

The Eric D. Davis Sarcoma Foundation (EDDF) was established in 2012 by Eric’s family and friends in his honor and memory. Eric lost a bravely fought battle with sarcoma in October 2011. EDDF is a 501 (c) (3) organization based in Mesquite, Texas, dedicated to finding a cure for sarcoma by increasing public awareness, funding sarcoma research, and providing support for adults with sarcoma and their families through financial assistance, education and advocacy.

 

EDDF offers a wide range of resources for adult sarcoma patients and their families both online and through initiatives, such as the Provide The Assist Fund. This fund offers much needed financial assistance for sarcoma patients in active treatment.  Provide the Assist grants may also be awarded to adults in active treatment for other rare cancers.  Rare cancers are defined as cancers affecting 200,000 or less Americans.

Grants help cover the costs for:

  • transportation (airfare, tolls, car rental, gas, taxi service)
  • lodging during treatments
  • meals during treatments
  • childcare during treatment

 

In 2013 EDDF also launched a 50/50 campaign to symbolize their commitment to positively impacting the lives of adults facing a sarcoma diagnosis.  This comprehensive approach includes a focus on financial assistance, increased awareness and sarcoma research. Supporters are urged to take the 50/50 pledge on EricDDavisFoundation.org.

 

Join EDDF co-founders and board members Zanetta Davis (the wife of Eric Davis) and Nia Davis (the daughter of Eric Davis) on 5/14/13 at 8pm ET at www.tweetchat.com. They will be guests of Treatment Diaries’ weekly #TreatDiariesChat and will share information about sarcoma, their personal stories and how you can help support the work of EDDF.

Where Can Technology Take Us In Healthcare?

Cariloop-Header-Logo1

When it comes to healthcare and wellness these days, which tool would you more likely associate with quality care and a positive experience – a stethoscope or an iPad? Well, if it were the 7-year old version of me talking, there’d be no doubt in my mind that “stethoscope” would be the answer.  Obviously, 7-year old me has never seen an iPad – he’s busy just trying to figure out how to beat Super Mario 3 for Nintendo.  Best of luck little dude!  Present day me picks up a stethoscope and sees a tool that does only one measly thing.  Bore snore.

 

It’s truly amazing just how far healthcare itself has come in terms of its adoption of certain technologies and their various impacts on the outcomes.  According to some research done in 2012 by pmlive, nearly 62% of physicians were using an iPad professionally and 85% using a smartphone, with those numbers expected to continue growing aggressively here in 2013.  And docs aren’t just using iPads or smart phones to update electronic health records (EHRs) or record prescription orders, they’re charting, taking vitals, recording images, communicating with team members, and gathering patient feedback.

 

Some hospitals, such as Mayo, have even been known to build their own apps internally and sell them to patients!  This is particularly interesting because it points out that the health IT evolution hasn’t just been limited to devices in the hospital setting – it’s expanded to consumer focused software and applications as well.

 

Map My Fitness and Fitbit have helped consumers get more excited about their fitness routines and cardio activities.  Wello has brought personal training into the home so people can train virtually with a professional.  Ginger.io is using smart phone and tablet data to help researchers better understand what the world is out there doing every day in terms of their health.  My company, Cariloop, is working to help people do better research about senior care and service providers and save time connecting with them.  Last, but certainly not least, this amazing concept of Treatment Diaries is working to connect people with certain illnesses or conditions and share information that might be valuable or comforting.  I can’t help but smile when I think of all the cool stuff that hasn’t even been launched yet!

 

Still, these exciting trends within the hospital as well as the wave of consumer applications have their fair share of skeptics.

 

Technology can crash. Humans can create typos. Data can get deleted or lost. Privacy may be breached. The internet could go down. Devices can break, malfunction, or heaven forbid – run outta batteries!

 

Clearly, I’m not the first person to bring up these concerns.  Do a search for “Health technology issues” and you’ll find plenty of statistics and cases that point out the weaknesses in letting technology storm the gates of the healthcare system.  But, I’m not going to quote any of them, because I want to hear from you instead.

 

Are you someone who is excited about the possibilities of what technology could do for our healthcare system, or are you someone that thinks all of these additional gadgets and do-dads are going to just lead to more confusion, mistakes, and potentially lives?

 

Join myself and others on 4/30 at 8 PM EST for an exciting TweetChat (#treatdiarieschat) about the big developments in Health Technology and just what it means for us as we go forward.

 

Basic Tips on Working With Health Insurance

In my book,The Malformation of Health Care book (now available on Amazon.com, I detail several tips on how to navigate through our very complex and often times confusing health care system. Today I want to take you inside the book and give you some basics of where to begin. Although some of these topics may seem obvious, they are often things that are overlooked when we are thrown into stressful situations.

 

Checklist for Health-Care Rights and Service

 

  • Know your benefits: Get a printout from your insurer and know your deductible and out-of- pocket maximum. This way, you can track what you are responsible for. Be an educated consumer.
  • Ask for a case manager. This is a contact person within your insurance company who will know your case and be of real benefit to you if it is a complicated one. If your insurance company says you can’t have a case manager, keep asking. Once they see all the claims coming in, most likely the company will change its mind.
  • Keep all of your insurance claims and bills/booklets, which you can usually do online. Keeping hard copies is probably a good idea, just in case your computer or backup drive dies.
  • Appoint an organized family member/friend to help you with all of this because it can be overwhelming especially if you’re sick.
  • Reach out to a hospital social worker or to local nonprofit organizations (such as the Cancer Legal Resource Center, the Leukemia & Lymphoma Society, etc.) for ongoing help or support. They will know of good resources to help you if you’re in trouble and can save you a lot of legwork.
  • Write down the name of anyone you speak with at your insurance company every time you contact your provider or your provider contacts you. Make sure you record the full name, date, and a detailed synopsis of the conversation.
  • Follow up!
  • If you are denied coverage, do not be afraid to appeal. Jump through all the hoops the insurance company asks of you, and document everything. If, at the end of the appeals process, you need an attorney, you will have something to give him or her.
  • Learn all you can about your condition. A lot of times, insurance company workers know little about your illness and you must become your own best advocate.
  • Check with your insurance company about its fertility policies. I include this advice because many young adults are diagnosed with serious illnesses that may require heavy medications and treatments. At the point of diagnosis, someone who is in their late teens may not be thinking about future plans for a family.
  • Have a relationship of open communication with your doctors, who can help to advocate for you. Know that there is creative coding for blood tests and other procedures you may require to facilitate your health. A test that might not be covered if coded in one particular way may pass muster with your insurance company if coded in another way.
  • Know your out-of-network benefits. Sometimes you may be referred to specialists who may not be in your insurance company’s network␣ What is the percentage and how does your out-of- network benefit work with your deductible? Do any of the company’s in -network doctors offer the same care as the out-of-network specialist to whom you have been referred? If not, most policies have provisions to cover out-of-network providers when no in-network doctor has the same capability.
  • Try to connect all of your doctors, so that each knows about your health in relation to the other physicians providing your care. If you can start a group dialogue among your doctors, your care will be better.The Malformation of Health Care (Chapter 25) Copyright Erin Havel 2012.

Join us on 3/19/13 at 8pm ET at www.tweetchat.com for our weekly #TreatDiariesChat with Erin Havel and learn more!

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