Archive for 'chronic illness'

Preparing for a Doctor’s Appointment to Maximize Precious Minutes

Saturday, September 29th, 2012 at 4:59 am  
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No one likes to go to the doctor. It makes us nervous. We may be worried about our health, and the unfamiliar surroundings don’t help. We realize that our medical care is in the hands of someone else and we aren’t sure we trust everyone involved.

Even if we do trust the medical providers, we might still be anxious. We sit in the exam room, listen to what is happening outside the four walls and wait. We are alone with our concerns until the doctor walks in. We understand she is pressed for time so we try to cram everything we want addressed into a very short period of time, usually 7-15 minutes. We enter into a conversation with our doctor, are asked questions, report our symptoms and what is occurring with our health, become sidetracked and …bingo!..we forget the important questions we wanted to ask the doctor.

 Why?

 Stress interferes with our memory. It happens to all of us. It’s not uncommon to leave a doctor’s office and remember an important point of our visit that was not addressed. All because seeing a doctor about a medical issue is stressful.

If you prepare ahead of time, you’ll feel more confident and more empowered as a patient. It’s about taking charge of what you can. It’s not easy being a patient, and believe me, I’ve been a patient for a long time. For 16 months I had a severe chronic pain condition (lower abdominal pain) and ended up living each chapter of my new book, The Take-Charge Patient: How You Can Get the Best Medical Care. The journey was not an easy one. Ironically, six months into my interviews of over 200 physicians, nurses, other medical professionals and patients for my book, unrelenting pain forced me to use the strategies I’d developed and gleaned from my research. I saw 11 physicians of differing specialties, 3 alternative medicine practitioners, went through 15 procedures and tests and was prescribed 22 medications. I received 10 misdiagnoses. To say that I was discouraged, exhausted, depressed and disillusioned with medical care, is an understatement. But through my research, I found my own diagnosis and the surgeon to heal me. As it turned out I had a muscle tear in my C-section site with nerve involvement, an inguinal hernia with a nerve passing through the hole, and two belly-button hernias. Because hernias in women are rare, no medical provider I saw thought of it.

Tips to prepare for a successful doctor’s appointment:

1. Prepare a list of questions for your doctor. What do you want addressed in the office visit?

2,  Create a brief health summary that includes:

-your top three medical concerns

-your list of current medications and their dosages, over the counter medications, herbs and supplements

-any symptoms you’ve been having, when they occur, what makes them worse or better (for example: exercise or eating) and what you have tried for symptom relief.

-List any medical professionals you’ve seen for your current condition or for other conditions that pertain to your visit.

3.  Prior to your appointment, obtain copies of any test results and reports that were done by other physicians. Bring these copies with you. Never rely on a doctor’s office to send them as medical offices are very busy and your request can be easily overlooked.

4. If you are seeing this doctor for the first time, create a brief health history including major medical events such as surgeries, serious illnesses, medical conditions and more.

Preparing in this way will allow your doctor to view your entire medical picture. This saves time and prevents you or the doctor from lassoing the information from other doctors or your pharmacist. Putting it together also familiarizes you with what is happening with you medically, where you’ve been, whom you’ve seen, and what medications you are taking.

This is about being in charge of you as a patient. And taking some of the control eases anxiety, and increases self-confidence.

Written by – Martine Ehrenclou, M.A. Patient advocate, patient and award-winning author of The Take-Charge Patient and Critical Conditions.

Join us for an hour with Martine and learn more 10/2/12 @ 8pm ET www.tweetchat.com #treatdiarieschat

A True Story of Living with Fibromyalgia

Monday, April 30th, 2012 at 12:49 pm  
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Before Fibromyalgia, Carol enjoyed working and was a true social butterfly. She loved to cook, host dinner parties, enjoyed long walks and hiking with her husband; active was an understatement. She was the typical work-a-holic who always had goals and met them in record pace. She worked her way up the ranks; always taking on more responsibility. She had pride in her work and did it well. She didn’t realize that her body was slowly turning against her. Eventually her body had enough. She had no choice but to face reality.

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My hips were not working and I was in constant pain. After doctors kept extending my sick leave, I lost my job. My world was tumbling down around me.
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Through a series of events, and the help of a friend who knew what to look for, Carol discovered she had full-blown Fibromyalgia. It didn’t matter what started it; the sprained hips, working too hard, too much stress, losing her job, her husband’s job being relocated to another state…no, all that mattered was this thing called Fibromyalgia wasn’t going away. With Fibromyalgia, Carol has chronic pain all over. Exhaustion comes from doing a load of laundry or cooking a meal. 

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A simple shopping trip makes me feel like I danced all night and was dragged home by a semi. Thoughts and words don’t match up. Not able to concentrate, my memory gets scrambled and depression sets in. I have no control over my body from one day to the next, and sometimes from one hour to the next. Weather changes and cold damp air can send me into a tailspin, causing flare-ups for days, weeks, or months. I often ask, “Why me?”

Fibromyalgia causes pain that waxes and wanes with no rhyme or reason. From burning and tingling to stabbing and crushing, fibromyalgia pain can spread from one area to another, bouncing around like a ping-pong ball, or spreading over the entire body all at once.  Despite this harsh reality, Carol has found there are hidden blessings with Fibromyalgia because it forces you to slow down. Fibromyalgia has a way of making you appreciate the simple things in life. Right now, Carol is still mourning the ‘old me.’

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I just want to feel normal again.  Support groups are essential to holding onto any sanity when you have chronic illness. ‘Treatment Diaries’ provides my online virtual daily dose, while ‘Daily Pain’ provides my monthly, long awaited hug of understanding and reality.
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Carol is a TreatmentDiaries user and friend.  We thank Carol for her insight into this chronic illness and we welcome you to join us for Your diary – Shared healing at TreatmentDiaries.com.Continue your page here…

Kidney Disease, Cancer, You & Libre Clothing

Monday, April 23rd, 2012 at 11:46 am  
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In January of 2008 I learned of kidney disease, and inconsequently, dialysis for the first time. By February, I knew it all too well. My mom had been put into the hospital, and ultimately, put on dialysis because of sudden loss of kidney function for unknown reasons. It was scary and sad, and ultimately I wanted to help in whatever way possible. I wasn’t sure what to say or do. It was new to us all, and being away from her at school was harder than I had imagined.

From that day on our lives were changed, hers especially, with dialysis treatments three times a week for up to four hours at a time. She had to retire from teaching after 28 years so she could make her treatments and her life suddenly revolved around this disease and the discomfort of treatments that came along with it. People always say “Let me know if I can do anything to help,” but what can we really do if we’re not in the medical field? Offer kind and compassionate words, support them in whatever way possible? It wasn’t enough for me.

I struggled realizing how hard things were for her. She didn’t have the freedom she once had and now relied on a machine in order to stay alive and healthy. Daily tasks now put her on the brink of exhaustion, and it was hard for us all to realize that this disease was taking a bigger toll on her than we had originally anticipated.

In the Fall of 2008, I was a senior at Miami University minoring in Entrepreneurship and was looking for an idea to pitch to the class for our semester long project. I called my mom to ask how her day had been and realized that I was hearing the same problem over and over, “I’m so cold during treatment and I can’t cover up with a blanket, so I’ve been cutting holes in my old sweatshirts to wear. It’s pretty ugly but it keeps me warm!” Then a light bulb came on. Why should she have to sacrifice style and dignity just to stay warm for treatments?

That is when Libre was born, and there was no turning back. Myself, and three others (Mandy Eckman, Tess Schuster, and Bethany Skaff) forged ahead during our class project, winning the business competition at the end of the semester and vowing that this was what we wanted to pursue after graduation the following spring. That next semester we worked with professors to raise capital and research manufacturing to get things in place. In March of 2009 we became Libre, LLC!

Libre is a clothing line made specifically for chemotherapy, dialysis, and other infusion patients. Our clothing is an everyday staple in anyone’s wardrobe, but has discreet areas of access specifically for a patient’s treatment site. The clothing keeps the patient covered and warm while keeping the treatment site accessible, and visible, for nurses. Zip it open when you’re at treatment, and zip it up when you’re done.

I was not the only with personal ties to the disease through my mother; all four of us were connected to these diseases in one way, shape, or form. Our passion for Libre is driven by helping those we love, our very supportive customers, and all of those patients out there who can benefit from our products. “Libre” means free and open in many languages, it’s our goal to make patients days a little more Libre!

I’m happy to say that my mother was blessed enough to receive a kidney transplant from my best friend in December of 2010. it was an amazing and scary time in my family’s life, but knowing the new life, and freedom, my mom would gain was worth it.

As you can see, resources and support were a huge part of this process and having a place to go, such as TreatmentDiaries.com, would have been so beneficial for my mother and family. Knowing what to expect, and receiving support from those who have been through this first hand is something that everyone deserves to be aware of and be a part of.

Thank you again to Amy for giving me the opportunity to tell my story and more about Libre! We love what Amy and Treatment Diaries represent and we’re very excited to be working closely with her to bring positiveness Libre Testimonials, support, resources, and more to those who are willing to connect and help each other. deserves, to make their time through whatever illness that much more bearable.

 

*You can contact us at Info@LibreClothing.com, or go to our website www.LibreClothing.com

Depression and Illness

Wednesday, March 14th, 2012 at 8:40 pm  
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For most, receiving the news of a debilitating illness can cause depression.  It‘s easy to become depressed upon hearing the a diagnosis from a doctor when one is faced with a health challenge.  Individuals with loved ones suffering with a chronic illness can also suffer from depression. Depression can be caused by a life changing event and often temporary and more of an initial reaction, or it can be more difficult to overcome and lead to more serious long term mental health challenges.

To ease depression, many look to writing as a way to release negative emotions.  TreatmentDiaries.com is an online community for people living with illness in addition to those who care for individuals with serious health conditions.  When the struggles in coping with an illness linger day in and day out, many become depressed and isolated in their abilities to cope and find relief.  It often lessens the burden when you have someone to connect with; even in a virtual capacity through a social network.  Shared experiences can provide a sense of belonging and alleviate the feelings of being depressed.  When it is difficult to express your feelings verbally, writing them down is often an easier way to share the intimate details of what is causing you to feel a certain way. Being depressed for long periods of time should be monitored and shared with your physician. When the stories of how others cope with being depressed is shared, one can learn from the insights and approaches of others and potentially find ways of  controlling a lingering depressed state of mind.

There is a strong sense of community for members of TreatmentDiaries.com.  On TreatmentDiaries there are many shared emotions, struggles and information regarding treatment approaches along with never ending compassion and shared healing among members.  Treatmentdiaries.com is a great resource in helping you cope with any illness and being depressed does not have to feel lonely.  Many share your illness and want to support and encourage you on your journey with this condition.  Start sharing today and inspired!

World Kidney Day 2012

Monday, March 5th, 2012 at 11:48 pm  
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Have you ever considered donating a kidney?  Each one of us is born with two and can live with one – so why not make a difference and give life to someone in need?  This is a personal topic for certain, and one that comes to mind for some on World Kidney Day 2012.  For those living with kidney disease the daily stresses of dealing with dialysis to stay alive, the fatigue which invades every minute of their day and not having the freedom to travel, can be isolating and stressful.  Many turn to social media for compassion, friendship and support in navigating a journey with kidney disease.

Some interesting facts to consider:

  • Someone is added to the kidney transplant waiting list every 10 minutes.
  • Each day 79 people receive organ transplants. However, 18 people die each day waiting for transplants due to a shortage of donated organs.
  • Organ transplantation has become an accepted medical treatment for end-stage organ failure.
  • As of 2009, the percentage of recipients who were still living 5-years after their transplant is: Kidney – 69.3% Heart - 74.9% Liver – 54.4% & Lung – 54.4%

 

What are actual recipients of a transplant sharing? Many share their personal stories on TreatmentDiaries. Below is a recent diary written by an ”End-Stage Kidney Disease” TD user at www.treatmentdiaries.com:

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“I’m 28 years old, I was born with Kidney Failure and on October 26th, 2011 I received a deceased donor Kidney Transplant.  I used to feel so run down and tired that the easiest things were becoming harder and harder as life on dialysis wore on and on. Some days just getting out of bed was hard.  It was like I had to force my body to get up; I had to force myself to eat and drink. But now I don’t need to work at any of it.  In fact, my body works like normal. The feeling I have in me is just – WOW!  The new kidney I got from a stranger has changed my life. Even if this kidney decides to fail tomorrow, I will not be all that sad because the last 3.5 months have been amazing, sure I’ve had a rough start with it but I’ve also had a 3.5 month break from dialysis, met some wonderful people at clinic and have decided that there IS more to life than going to dialysis 3 days a week and feeling like my life is over and done with before I’m even 30. And you know what? It’s all because some random person in the world, I didn’t know, decided to be an Organ Donor. You are heroes in my world; a total stranger who was kind enough to give me my life back.”Survivor and TD User
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Today there are more than enough people waiting for an organ to fill a large football stadium twice over.  This is a sad statistic, but one where each of us can make an impact.  TreatmentDiaries connects those on a similar journey with illness and inspires even those with any illness with the real life stories of others.  Living a life affected by illness can be lonely – we don’t want you to be alone any longer.  Start sharing with others today and be inspired to live well in your illness.  Your diary…Shared Healing!

Are Social Networks A Safe Haven For People With Disorders To Get The Support They Need?

Thursday, February 23rd, 2012 at 5:04 pm  
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“My hope in joining TD is to find others struggling with the physical and emotional challenges of disorders, people who understand the irrational places your head can take you.  I’ve already found a lot of inspiration here and hope there’s a lot more to come and that I can pay it forward.”
TreatmentDiaries.com user

Health and Social Networking

During the last five years, social networking has exploded in popularity and has quickly become a global phenomenon. This technology revolution has changed the way people share, communicate, and strengthen human relationships online. While social networks such as Facebook and LinkedIn have proven themselves to be great platforms for sharing personal information with others, the very openness they depend on has prevented them from being effective tools for health-related sharing and support. This is because the two key requirements for publicly sharing health data – privacy and anonymity – are generally suppressed in traditional social networking forums.

disordersNow, a new type of social network is emerging – the health-related “support network”. Health-related support networks depend on selective privacy and assured anonymity in order to foster the open and honest dialogue needed to benefit their users. Additionally, individuals who want to share their disorders and experiences often have complex profiles. For example, a participant in this type of “support network” might be a sufferer, caregiver, or both; and that individual may be battling a number of related or un-related disorders. In many cases physical ailments lead to mental disorders such as depression or anxiety. According to the Kim Foundation, almost one in four American adults suffers from mental disorders.

Besides conditions such as Schizophrenia, Alzheimer’s, and Autism, mental disorders include more common conditions such as anxiety, panic attacks, and mood disorders. Further, almost half of sufferers actually struggle with two or more disorders. These users need a safe haven where they can connect on a myriad of issues and concerns, where they can share in their triumphs with others, and where they will no longer feel isolated in their journey with disorders. The complexities of managing multiple disorders, both physical and mental, make a compelling case for the growth of specialized health-related support networks.

The Need for Privacy

Those individuals who are brave enough to participate in online communities and share intimate details of their personal challenges with disorders – whether physical or mental health related – assume risks. This is because most social networking forums, like Facebook and Google+, and even most health-related social networks, have adopted business models that leverage personal data to increase profits. These sites utilize business models that rely on aggregating user data and selling that data to third parties. Time and again, these models have run afoul of privacy-minded groups and individuals.

These social networking sites, which rely on limiting privacy and anonymity, cannot effectively address the challenges posed by people seeking support for health-related disorders. For instance – where does one go to communicate and bond with others living with disorders such as depression, OCD, anxiety, or bipolar disorders? While it’s likely that many of these other individuals are all on Facebook, it is a very “unsafe” forum to share personal details of these disorders because of the potential impact these details could have in other areas of a person’s life. For instance, many employers look to social networking sites like Facebook and LinkedIn when screening employees and possible hires and often make decisions based upon the photos, posts, and groups people belong to.  So, a person with any kind of disorder who is looking for support on Facebook can be affected in a negative manner; health-related discrimination is not uncommon in employment, housing, and other areas.

TreatmentDiaries.com – A Better Path

In order to develop a strong community, a health-related social networking site must gain and keep the trust of its users. This can only be done by making a firm commitment to the privacy of each and every member of the community, and allowing each user to dictate exactly what should or should not be shared, and with whom those details should be shared. In order to foster tightly knit support communities, a social network must:

  1. Guarantee anonymity for all its users;
  2. Allow end users to manage privacy with ease;
  3. Make a commitment not to sell any private data.

These self-organized communities of trusted individuals are people who may never meet in real-life but who are bonded by their shared experiences with different disorders. While a support network is not a forum for formal medical advice, the communities that form encourage a number of behaviors that can benefit participants; from increased knowledge and awareness about specific treatments, symptoms, and disorders, to the real hope that springs from constant positive reinforcement and empathy. This leads to a concept known as “shared healing”.

“Thank you for letting me talk in words that I have a hard time saying out loud.”

TreatmentDiaries.com user

TreatmentDiaries.com believes that anonymity and privacy are the absolute cornerstones to delivering a shared healing experience predicated primarily on improving the mental health and well being of its users, not profits and losses. Unlike other social networking sites, TreatmentDiaries.com recognizes that the growth potential of user communities can only be maximized if those users are comfortable in their knowledge that they control exactly what can be shared and with whom. And only when communities grow through assured privacy and anonymity do they become safe havens for sufferers and caregivers alike.

“It’s nice to be able to vent to others who understand your situation, because sometimes you don’t want to wear out your family and friends with never feeling well,” said Janet Palutke, a hospital administrative director who uses the site and recommends it to her patients at Valley Health Winchester Medical Center.

Real People. Real Information. Actual Treatment Insight.

On TreatmentDiaries.com, members can think through and share all that concerns them and automatically be connected to those who are travelling a similar journey. Through a true support network environment such as TreatmentDiaries.com, the management of disorders can shift from a daunting and frightening ordeal to a journey of shared healing. Besides delivering emotional support, TreatmentDiaries.com provides tangible benefits to its users through shared knowledge. Support is found in the knowledge of how others are being treated for disorders and how they are responding to their treatment.  This increased awareness results in more informed conversations between patients and medical providers and a feeling of empowerment in mapping out a treatment strategy.

About TreatmentDiaries.com

Treatment Diaries Inc. (www.TreatmentDiaries.com) is a unique social network, providing REAL information exchange between people coping with or caring for anyone with disorders, mental health conditions, or rare diseases. This virtual support is free and always available; site offers a safe place to keep diaries anonymously of daily life journeys, across multiple conditions – either privately or shared with others, enabling the exchange of treatment insight, mutual support, and encouragement.

For more information and to register for TreatmentDiaries.com please visit our website at www.TreatmentDiaries.com

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