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...”

“You have CANCER”…

clinical trials

Patient Empowerment Network

Who would not be overwhelmed after hearing those words?

Facing a diagnosis of a serious illness like cancer overwhelms the best of us.  Even the strongest, bravest, most intelligent, most steady person in the world has trouble hearing those words. It is not only facing one’s mortality that is daunting, but also confronting and dealing with all the numerous decisions and complicated scenarios that result from this diagnosis.

  • Making the right decisions about health choices is a complex task. Finding the right doctor, right treatment, deciding whether to get a second opinion or enter a clinical trial are just some of the first line decisions.
  • Then, how to talk to your spouse, your family, your co-workers, your friends and what to do about your future plans enter into the equation.

These are all issues that patient advocacy deals with, every day, all day long. Patient advocates are here to help. With websites, live chats, phone lines, Facebook groups and numerous other forms of media, these groups help patients in need.

Patients learn from patients on how to cope with the diagnosis of a serious illness. Patients empower other patients by showing them the way and telling the story of how they coped. No one wants to face this alone. And no one has to.

Empowerment means taking control of your health and doing the best you can do to educate yourself so that you feel more confident that you are getting the best, most personalized treatment that you deserve. It means finding out all you can about your specific condition and then searching for the best doctor you can find to treat you. This may mean traveling to a major cancer center to get a second opinion. You do not necessarily have to give up getting treated locally, but you should definitely get a second opinion and have an expert available to oversee the treatment and especially to inform you of any clinical trials available for your specific condition. Once you start a treatment regimen, you may no longer qualify for a clinical trial, so it is best to research this early.

At Patient Empowerment Network, we empower patients to gain the confidence to self-advocate. Videos and patient stories of patients at town meetings who have been through what you are going through, can show the way. Interviews with industry leaders, healthcare providers and patient advocates can provide information about clinical trial navigation and participation, support groups, live events and other ways of patient empowerment. Our Patient Café™ sessions can help show you and others like you how to gain knowledge about and cope with their illness. The important thing to remember is that you are NOT alone and that you CAN learn to be your own advocate and get the best, personalized treatment that you deserve. There is a wealth of knowledge out there. Do not be afraid to start on your search. But empower yourself first and make a plan – learn from our empowered patients and gain strength from their experience.


Patient Empowerment Network is a 501(c)(3) non-profit organization dedicated to empowering patients worldwide through education, support and the help of other patients. We want to encourage patients to reach out and gain the knowledge and confidence to advocate for themselves. We deal mainly with blood cancers (chronic lymphocytic leukemia, non-Hodgkin lymphoma, multiple myeloma) and melanoma,  lung, and prostate cancer, however we do wish for every patient worldwide to become empowered!
JJJoan Justice is the Executive Director of the Patient Empowerment Network. She has a   nursing degree and a masters in business and has worked as a nurse both in Europe and the US. She spent 12 years in international marketing for several medical device         companies before switching to the non-profit world.

Depression is More Than Just Being Sad….

depression-quotes-pictures-1Depression defined through the personal stories of those living with depression, shared privately and anonymously at – Never feel alone again…join us!

Do you find yourself struggling more than you have in months?  Searching for the reason you feel the way you do?  Find yourself feeling lonely even when you’re surrounded by people and unable to focus on anything?  Feeling angry with yourself because the rest of the world wants you to be happy?


How does depression really feel…

“I’ve reached a low. I feel helpless, hopeless, and lonely, like I’ll never be able to claw my way out of this dark pit I’ve managed to fall into.”

“Every day takes so much effort to push through. My depression is not as bad as it used to be, but it’s still always there. I can always feel it. It waits inside my body for one thing to go wrong and then it picks at that problem more and more until I’m bleeding uncontrollably, and have another breakdown. Then a lot of days it decides to just flip a switch randomly and cause sorrow without reason; crying without any cause. Those days are hard. You must keep moving even though you feel like hiding away from everyone. You don’t know how to help that sort of sadness because without a cause how do you find a solution? Sometimes distractions just aren’t enough.”

What friends and family need to understand about depression…

“There are many other complications from depression. I don’t feel like people fully understand it. When they hear depression I feel as though they only think of the things that are portrayed in the media; sadness, hopelessness, not wanting to do anything. There’s so much more involved than hat, especially since every human being is different and has been through different experiences. In that way every person that has depression, is having a different sort of experience with it. Depression is just a vague term. “

“I constantly feel guilty or that I am a mean, bad person because of these outbursts and the hurtful things depression sometimes cause me to say. It’s in these moments I get cold and distant. I am not myself.” 

What it feels like to connect with those who can relate…

“This entire diary is like water for a parched soul. It’s so natural to be back writing about what I & we all know best. I humbly thank you all for welcoming me back with open arms. There is so much healing, love and diversity here. I love it!!!”

“I’ve been struggling so much. I know what it’s like and the worst is feeling like you have nowhere to turn in your darkest moments even though people have offered to be there. I hate the place of nowhere out and the frustration of feeling like I’ll fail.  It’s good to surround myself with people like those on Treatment Diaries – always makes me feel less alone.”.

Living with depression or any mental illness does not have to be isolating.  Join us for safe and anonymous sharing of those struggles which trouble you and follow you everyday of your life.  We see you for how you are feeling on the inside and we are always here to welcome and encourage you!


10 Reasons Mother’s Day Matters

mothersdayYour Mother brought you into this world and carried you for what felt like forever until the minute you were born and the world stood still…


Your Mother was the first person to feel your movement – she fell in love with you before anyone on this Earth!


Your Mom worries more and forgives the fastest!


Your Mom misses you even if you are just down the hall or worlds away.


She’ll cry tears of joy at the sound of your voice and at every accomplishment big or small.


She can’t wait for you to be a mother or father because she knows how wonderful it is to be a parent!


She knows you love her even when you’re mad – growing up is hard on all of us!


She will grow old and her health may suffer and


She’s going to need you to be her care for her one day….


You know how to do it best because she taught you everything you need to know!


Happy Mother’s Day from

skin cancerSince its Melanoma Awareness Month and I happen to be a Melanoma Warrior, I want to share my personal experience and the patient’s perspective.  I believe this is a much needed dose of reality around a very scary cancer.

The day I received my diagnosis was the first time I had ever heard the word – MELANOMA.  In fact, at first I didn’t even relate it to cancer; that is, not until I “googled” it.  What we learn via the web can be frightening and a bit overwhelming.  Why is it that the most depressing and fearful scenarios rise to the top of the search?  Missing are the intimate experiences from those who share our journey which is often what we need the most.

After 10 years on this journey and no evidence of disease, as I reflect on my melanoma experience here is how my life has changed as a result of my melanoma diagnosis and what I want melanoma patients and caregivers to embrace:

Prevention – I could have done a better job taking care of me.  I didn’t pay attention to the warnings on the tanning bed or wear sunscreen at the beach.  In fact, I smothered myself with baby oil so I could get some “color” and look healthy.  My mother would tell me I was burning, but in my mind this was an accomplishment.  Now, I cover up and sunscreen is my second skin.  Had it not been for my Melanoma – I’d still be basking in the sun and damaging my skin beyond repair.

SUNSHINE-1Early detection – My dear friend pointed out my melanoma and suggested I get it checked out.  It looked strange and it was really dark.  Her concern saved my life.  If something seems unusual about your skin – don’t ignore it.  Catching it early is the second best cure to preventing it all together.  I’ve now become an advocate for the health of my own skin and being aware on behalf of those I love.

Empowerment – My diagnosis taught me everything I needed to know about skin cancer and even more about my health.  Did you know a melanoma rarely comes from an existing mole?  Did you know there are three major types of skin cancer – melanoma, basal cell carcinoma and squamous cell carcinoma?  Melanoma travels to other organs via our lymphatic system.  Knowledge is now my peace of mind and has become so important to living a balanced life and understanding my cancer.

You are not alone – I have a whole new family and life experiences because of my melanoma.  Finding purpose in a seemingly tragic and life changing situation has made my life better.  I often say – Melanoma saved my life and I’m thankful for my cancer.  Finding an organization focused on research and education to positively change the lives of others like the Melanoma Research Foundation or joining groups who bring hope to your journey and opportunities to get involved like AIM at Melanoma.  Or simply sharing your journey and learning from others in a support group like Treatment Diaries brings comfort and friendship from those who can relate.

Start living – Don’t let any cancer diagnosis, not even melanoma, stop you from living out each and every day to the fullest.  Find your purpose and be empowered to live well and to help others.  Make your mark on the world and share your story to spread awareness this month and to give others hope in tomorrow.

Natural Approaches to Treating Chronic Pain

painAs we age and endure the resulting effects of a chronic illness, one often experiences various types of pain.  Pain can often be both debilitating and challenging as we struggle to navigate day to day activities.  Pain isn’t always recognized by those around us and is often discounted by those who can’t relate to our struggle in pursuing a solution for relief.

Pain never discriminates when it comes to age or location and can flare up in places like our lower back, heals, neck, joints, muscles and more.  This pain can be constant and the intensity levels can span all ranges on the spectrum from mildly impacting us to excruciating pain as depicted on traditional scale of 1-10.  This is the simplest way for us to illustrate our pain to those trying to understand the severity of our situation, yet it tells a fraction of the story.

Pain can be caused by a life filled with stress, chronic illness, athletic injures along with the process of aging.  While the benefits to pain relief may seem obvious, there are varying perspectives about natural pain relief and a general health and wellness outlook.

Often the focus is on:

  • Ways to improve flexibility and resulting mobility to naturally reduce aches and pains
  • Limiting the risk of athletic injuries by properly training and stretching out to avoid over exertion
  • The benefits of improving our posture to reduce tension headaches or muscle aches
  • Reducing stress and improving our overall well-being through nutrition and exercise

The one theme that tends to span all slants to pain relief is a desire to keep the approach simple while remaining proactive.  One example of this blended and beneficial focus is The Melt Method approach to maintaining a healthy, pain-free, active lifestyle. It incorporates a natural self-treatment solution designed for anyone that wants to feel better, regardless of age, gender, or current activity level.  The challenge – regardless of the path you chose in pursuing pain relief, consider a lifestyle attitude. Your commitment to the solution which is best suited for your situation has no finish line; in fact it’s a choice to pursue a journey to wellness as a lifelong adventure!  Be well and pain free!

3 Effects of Living with a Chronic Illness


Do you live a life with a chronic illness or care for someone who does?  Have you felt the frustrations of others not truly understanding your illness?  Are you recently diagnosed and not sure how to navigate this new normal?  A chronic illness never goes away; unfortunately there isn’t a cure which forces us to find a way forward despite an ongoing illness.




A few things to consider…

  • Chronic Illnesses often result in physical disabilities – If your mobility is impacted by a chronic illness, maintaining and improving your independence will be a focus. Don’t let pride get in the way.  It’s okay to lean on the advantages of using a motorized scooter to get around or a lift chair to get you up and moving.  There are a number of companies like Pride Mobility who specialize in helping you stay active in life to improve your mobility.  With mobility comes independence and improved well-being.
  • Chronic illnesses often warrant a caregiver – Depending upon your age and stage of illness, a caregiver can be incredibly helpful. It might be your spouse, child or friend who you lean on to do the things you can no longer manage alone.  Caregivers can significantly improve quality of life and long term care.  Be open to this care if and when you need it.
  • Chronic illnesses can empower – Find those on a similar journey and you will be inspired and encouraged. Understanding a diagnosis firsthand because you are living with it provides an intimate perspective and genuine empathy for others.  Whether you are connecting with patients and caregivers on sites like Treatment Diaries or making an impact with organizations that support your illness, you can feel empowered through your understanding and personal experience.

These are just a few things to consider.  A chronic illness is not a death sentence; in fact it’s an opportunity to let others lend a hand, to better understand available tools and resources and to find ways keep your independence despite an illness.

3 Things to Know About a Cancer Diagnosis

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 or to help raise the funds  needed to support my family and my treatment with sites like  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


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 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. 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:


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


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.

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 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  .

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