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...”

3 Things to Know About a Cancer Diagnosis

cancer

You may have heard these words – “You have CANCER.”  I have and I never thought I would.  So what do you do?  How do you begin to process the journey ahead of you.  Well, once a cancer patient, survivor, warrior or caregiver you will forever live a life that echoes this statement.  What you chose to do with this diagnosis is entirely up to you.

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Knowledge – Many go to the web first!  What is this cancer diagnosis?  What does it mean to my future?  How do I survive?  Some of this knowledge can be scary, a little too clinical and most likely overwhelming.  We search for the information that will give us hope and certainty in our treatment.  We need to connect with those individuals who have been down this road and survived.  We quickly become experts in our diagnosis armed and ready to go toe to toe with our care team.

Acceptance – With knowledge we often come to accept our diagnosis.  Now that we are clear on this cancer diagnosis and have a treatment plan, we are prepared to go to battle and kick cancer to the curb.  We may have cancer, but it certainly does not have us.  Once again we find ourselves in the world of other cancer patients leaning on what we have in common and going to battle.  Some do this privately and among family while others leverage social media platforms to inform and rally others.  Whether it’s to chronicle our journey and share our story with friends and family via sites like www.carepages.com or to help raise the funds  needed to support my family and my treatment with sites like www.wecarecard.com.  Acceptance of a cancer diagnosis comes in many forms and can be extremely liberating in the pursuit of wellness.

Support – Since a cancer diagnosis does not come with a cure, the support we need will follow us throughout the rest of our lives.  The support we need upfront differs greatly from the support we need as a survivor and even as a caregiver.  Support comes in different forms from those who know us, to those who know of us and from the people we may never know, but care about our journey.  Understanding the emotions, struggles and needs is intimately assumed by fellow cancer warriors.  Finding them and connecting is critical to the well-being and continued health of those affected by a cancer diagnosis.

Treatment Diaries has taken all three aspects of a cancer diagnosis into consideration in creating an online patient community which provides an opportunity for individuals to anonymously share their health journey via personal and private diaries.   By virtue of extending anonymity to the cancer community there is a willingness and desire to share a personal story which has been instrumental in connecting individuals around the world, who are looking for those on a similar journey and who can provide insight into resources, treatment options and outcomes.

Social media is quickly bringing the patient closer to the center of their care and providing tremendous empowerment.  Knowledge about health continues to be the most popular topic on the internet and patients want more specifics when it comes to a particular ailment, treatment, symptom, diagnosis…the list is LONG.  But, what they don’t need is more information.  The internet is peppered with clinical slants protected with litigious disclaimers.  If you want the truth, it’s captured in the personal stories of actual patients, living with health related challenges.  Finding those who share your experience and who are willing to share is what social media enables.  Having an opportunity to be private with what you share and who you share it with is what sets Treatment Diaries apart.

We wish you wellness, knowledge, acceptance and support on your cancer journey!  Come scribble with us!

Heart Disease – American Indians & Alaska Natives

AreU2

The Native Health News Alliance is partnering with Treatment Diaries for a Twitter chat in recognition of American Heart Month during February. The American Indian Cancer Foundation will also be participating as a partner.

Heart disease is the number one cause of death among American Indians and Alaska Natives, and stroke is the sixth leading cause of death. More AIANs die from heart diseases at a younger age than any other racial and ethnic group in the US, according to the Indian Health Service. More than a third of AIANs who die of heart disease die before age 65. Diabetes is a major risk factor for cardiovascular disease for American Indians.

This evening chat will explore how heart disease affects Native communities – we’ll share stories, challenges and highlights of covering this topic, whether that has been on a tribal, local or national level.

 

Who: Native Health News Alliance and Treatment Diaries

What: #TreatDiariesChat

When: Tuesday, Feb. 3 from 7-8 p.m., CDT (chat will last one hour)

Where: Twitter

 

Follow: NHNA  @newsNHNA | Treatment Diaries @TreatDiaries | American Indian Cancer Foundation @AICAF_Org

 

Please join the chat by tweeting and using the #treatdiarieschat hashtag to share your insight on Native health in Indian County, whether it’s through a blog, coverage or your work in the health care field as a provider or a communications pro.

Participants are welcome to promote their media outlets and organizations through resources or connections. If there are others you’d think would benefit from the conversation, please share this invitation with them.

 

About Treatment Diaries

TreatmentDiaries.com is a unique healthcare platform and online patient community built at the intersection of personal health, privacy, and social communication. Individual patients, caregivers and health advocates from around the world connect on Treatment Diaries to share their journey and bring personal insight to resources, treatment options and outcomes. The platform now serves as a way to bring personalized adherence, compliance and disease awareness materials to patients in a way that brings each individual closer to the center of their care.  Treatment Diaries believes sharing health experiences can help lead to improved adherence and better health.

 

This virtual support group is free and always available; offering a safe place to anonymously keep multiplediaries of your daily journey, across more than one condition – either privately or shared out with others, allowing for shared coping strategies, support for others and the exchange of information.  TreatmentDiaries.com is dedicated to the needs of ALL types of users including; individual patients, caregivers, family members and advocates. We promote the importance of keeping a diary of life changing experiences and the significance of engaging in behaviors and activities, which promote health, mental wellness and the self-management of chronic conditions.

There’s a new landing page specifically for Native Americans with chronic illnesses or those caring for loved ones living with these conditions:

https://www.treatmentdiaries.com/native-american-health/

 

About American Indian Cancer Foundation

The mission of the American Indian Cancer Foundation (AICAF) is to eliminate the cancer burdens on American Indian families through education, prevention, early detection, treatment and survivor support.

AICAF is a 501(c)3 non-profit organization that was established to address the tremendous cancer inequities faced by American Indian and Alaska Native communities. AICAF’s board members and employees are American Indian, with an array of experience serving the health needs of our people.

 

About Native Health News Alliance

The Native Health News Alliance (NHNA) is non-profit news organization in partnership with the Native American Journalists Association. We serve media outlets with multimedia news and feature stories specific to the health and wellness needs, issues and concerns of the American Indian Alaskan Native governments and communities.

NHNA editors and journalists focus on health news from the ground up, featuring the voices of those most affected and those at the forefront of health and wellness.

 

5 Forms Patients & Caregivers Seem to Forget

law

Most people, whether they are facing an illness or not, know that estate planning is an important part of being an adult. Just about everyone knows what a Last Will is, and what POA stands for. But when faced when an illness, planning for the present can be even harder than planning for the future.

We’ve come up with a list of 7 forms that might help to make your life, or that of your family member or friend, a little easier during an illness while navigating the complicated waters of finance, family, and treatment.

  • Codicil

If you already have a Last Will, but would like to make a small change to it, a Codicil is what you would use. You can even use it to change an executor or guardian.

The benefit of a Codicil is that you won’t have to create a whole new Last Will and Testament for one small change, saving you time and stress.

  • Letter of Intent

A Letter of Intent is a useful form that you can use to indicate your intentions. You can use a Letter of Intent to suggest who you would like to be a guardian for your children, who you would like to care for your pets, any estate planning preferences, and more.

Basically, a Letter of Intent is a piece of non-binding documentation that tells your family and friends that you would like something done a certain way. Although a Letter of Intent is not legally binding to any parties mentioned within it, it helps to avoid confusion by ensuring that the people in charge of your care, or that of your children or pets, will have an idea of your specific wishes.

  • Gift Deed

A Gift Deed is a form that allows a person to gift an item to another, or to have your representative transfer a gift in your name. It documents your intentions for an item and appoints a representative to follow through with your wishes should you become unable to do so.

This can be useful if you are undergoing treatment during someone else’s important life event. You can still plan to recognize it, but someone else will ensure that the gift arrives.

  • Child Medical Consent and Child Travel Consent

A Child Medical Consent form is used to give a guardian the right to make medical decisions for your child if you are temporarily unable to. One instance would be if your child was taking a trip with friends, family, or as part of a school event.

A Child Travel Consent is what allows a child to travel with another adult or alone. This might mean as part of a school trip, with friends, with family, or on their own.

Having both forms ensures that if there is an emergency while you child is gone, and you aren’t there to make decisions as their legal guardian, the proper choices will be made with as little complication as possible.

  • Survivorship Deed

A Survivorship Deed is what you can use to document that you and someone else share property rights. It ensures that, if one party is to pass away, the rights of and interest in the property will pass to the second party.

Survivorship Deeds are useful for couples who are not married, but who would like their property to be left to their partner in the event of their passing. Since Survivorship Deeds bypass the need for probate, it can help to make the process simpler and easier for the inheriting partner.

 

By using various forms, you can take care of small changes that you may not have thought of, and you can be sure to have a little more peace of mind.

When you are dealing with an illness personally, or you know someone who is, it’s important to have a solid plan so that the patient can focus on healing instead of the stress of planning for emergency situations and even everyday events.

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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