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A Different Normal

Living with a Chronic Condition

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The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service or treatment.

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Tuesday, December 27, 2011

Health Journaling: How To Decide What to Share

By Sona Mehring

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit providing free, personal websites that connect people experiencing a health challenge to their family and friends, making each health journey easier. CaringBridge sites offer a personal and private space to communicate and show support when health matters most. Follow Sona on Twitter – @gogosona.

The benefits of journaling about your health journey include stress relief, understanding how far you’ve come and finding an outlet for your emotions. Some people choose to keep a private journal and many are now taking to the Internet to share their story using social media.

Keeping an online journal can:

  • Serve as a reminder of how you reacted to procedures, medications, etc.
  • Give your friends and family a better understanding of your situation and how they can help.
  • Give you an outlet to share your story and emotions, and then move on.

If you share your story online for other people to read, it can sometimes be difficult to decide how much to write. Should I describe everything I’m going through? Should I keep it strictly to health events? Do people want to know detailed medical information?

There is no right or wrong answer to these questions. The information that is shared will differ from person to person depending on comfort levels and can also differ depending on the tool you’re using as your journal. For example, you may post more personal information if you know exactly who is reading your journal because it is password protected or invitation only. Or, you may want your site to be open to everyone so that others going through a similar situation can find you and learn from your experience.

Just remember, the journal is ultimately for you. Do what feels right for you and your situation. If you are uncomfortable or struggling to decide what to write, take a break. You can also read someone else’s journal for inspiration.

Take care to choose an online tool that is appropriate for you and provides the options you’re looking for. When sharing your health journey, you deserve privacy and respect; that’s why at CaringBridge we’ve outlined our unique approach to privacy, which may be different from many other online sharing tools.

I welcome any comments about your experience with journaling. Do you keep a private journal or share it online? Have you experienced any of these benefits? Do you have advice for others on how they can get started? Share your thoughts in the comments below or in the Chronic Conditions community.

Posted by: WebMD Blogs at 3:00 pm

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Wednesday, December 14, 2011

The Feet Only a Mother Could Love

By Krista Kellogg

Recently, I missed work and stayed in bed all day nursing the fourth cellulitis infection that I have had in the past eight months. Not to be confused with cellulite, another condition that could also cause one to want to lay in bed all day, cellulitis is a severe bacterial infection of the skin and underlying connective tissue caused by, among others things, chronic skin diseases like psoriasis. Cellulitis is painful, potentially life-threatening and requires immediate treatment with antibiotics.

I know all of this, of course, because I live with a chronic disease. A chronic disease that, while rarely life-threatening, requires constant diligence and special attention to avoid other life-threatening conditions like cellulitis. In this case, the special attention must be paid to my feet, for that is where my chronic scourge happens to be located. For the record, feet are not the easiest part of the body to care for. It’s especially difficult to prevent the cuts and scrapes that can lead to cellulitis episodes. Such prevention is extra challenging for someone like me, given that my cuts and scrapes occur on my feet before I even get out of bed in the morning. They happen without my even trying, or without walking on nails or barefoot over crunchy shards of glass. My feet are cracked and cut all or nearly all of the time. Such is life with “plantar” psoriasis, (we will save the story of plantar’s evil twin “palmar” for the sequel – but here’s a hint – “palm” is the operative word in her story). Even with diligence, one cannot underestimate the challenge of keeping one’s feet as clean as they need to be in order not to threaten one’s life. I need Marty McFly’s hover board, indoor fishing waders and antibiotic floor cleaner (a cheeky suggestion by my father, who also happens to be a physician).

I have the feet only a mother could love (by the way, my mother also has palmar-plantar psoriasis) but I’ve found another family that loves me just the same – an online family. When I found the National Psoriasis Foundation message boards, a world of support opened up to me. I’ve developed wonderful friendships with people through shared experiences, some with the disease, some treating the disease and some working to cure the disease. There were bleak days at the dawn of my diagnosis, when I was suffering and searching for answers. My only solace was the soft glow of my computer screen — the portal to my Foundation family. The Foundation’s online community was my lifeline to others with psoriasis and psoriatic arthritis. Living with a chronic disease can be very isolating. It is sometimes difficult to convey how much you are struggling. When you connect with others with the same story, you don’t really have to explain yourself (or your cellulitis) at all. My first post on the message boards read “Hands and Feet… Help.” Four little words that changed my life forever.

The National Psoriasis Foundation is on Facebook, Twitter and TalkPsoriasis.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

Posted by: WebMD Blogs at 3:58 pm

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Monday, December 12, 2011

Wallkiller 101

By Brian Rudd

Brian Rudd

Brian Rudd is a transplant liaison/advocate and motivational speaker.  He is a mentor for the Georgia Transplant Foundation and a volunteer for Donate Life Georgia, the state’s organ, tissue and eye donor registry. Brian serves on Emory Transplant Center’s Patient and Family Advisory Council. He has been a guest speaker for the Emory University School of Medicine and a key presenter at Georgia Transplant Foundation’s Wellness Conference.  He lives each day “Paying Forward” the gift of life he received.

I can still remember it as if it were yesterday. Almost 40 years ago to the day, my parents were holding a Christmas party at our house. It was 1971; I was 8 years old, and as my parents and their friends were socializing, my friends and I were socializing as well, running throughout the house, wrestling, drinking eggnog, running outside and back in, eating pie and playing hide-and-seek.

Later that evening, while all my friends were still going full-throttle, I began to feel very hot and tired.  So much so that I left my friends, went to my room and laid down on my bed, in the dark.  Not long after my mother found me. In a very lethargic tone I said, “I don’t feel good” and my mother got scared fast, because this was completely out of the norm for me or any of my three older siblings.

The next day found my mother and me at the pediatrician’s office, and with one blood sugar test my life, and that of my entire family, changed. Diagnosis: Juvenile Diabetes, Diabetes-Miletus, Type I Diabetes, Sugar-Diabetes, (or as hill-folk would say) “The Sugars”.  No matter what you called it back then I knew it must not be good because every time my mother told someone they would look at me as if I had been handed a fatal diagnosis. I had no idea that I would have to learn how to give myself insulin injections, check my blood sugar, count carbohydrates or discover the harsh meanings of the words hypoglycemia, insulin-shock, hyperglycemia, diabetic neuropathy and DKA (Diabetic Keto-Acidosis).

Once home, my mother called my father at work and told him the news. She hung up the phone and went into their bedroom. I walked in to find her making the bed and crying at the same time.  Not really understanding what was happening, I said the only thing that came to mind: “Don’t worry, Mom, everything’s gonna be ok.” What happened next is forever etched into my memory.  My mother came to where I stood, placed her hands firmly on my upper arms, squeezed and said, “Brian, no matter what happens I want you to remember one thing. The only limitations you will ever have in your life are those which you impose upon yourself.”

For the past 40 years, I have lived my life as such. Every morning I would wake up and, in a figurative way, a wall would rise up from the floor at the foot of my bed. Every day it was my job to figure out a way over, under, around or through that wall. I will admit there were some days, due to some of those conditions previously mentioned, that I did not find a way.  Nevertheless, I would lean up against that wall and say, “I am still here and I will be here tomorrow!”

The diagnosis of a chronic illness can seem like a multi-pronged attack on your life. The physical attack can be hard enough to deal with but when faced with the “social limitations” you can feel like the world is saying: “Here is your box, get in and don’t ever come out.  This as far as you can go.” But hey, what does the world know? It does not know you and it has no idea the potential you hold. My family always reminded me: “Don’t worry about what you don’t have.  Take what you do have and build from there.” One such instance became a major turning point in my life.

It had been my dream to become a pilot, but in the late 80’s the FAA told me I would not pass their medical. I said, “Fine, if I can’t fly it, I’ll jump out of it.” So, I took up skydiving. Not only did I become a skydiver, I also became an instructor. In the mid 90’s, one of our jump pilots told me that the FAA would now grant a private pilot’s license to diabetics. I grinned and asked him why I would want to fly the plane when I can fly ME?  He smiled and simply said, “Good point.” Skydiving was not the beginning nor would it be the end. I went on to become a climbing, rappelling and high-ropes course instructor. In the summer of 2011, my wife and I became certified Scuba divers and I am now looking to become a dive instructor.

Why all the instructor ratings? So I may teach, empower and show those travelling the road I’ve taken that impossible is just a word. I am here to show that a chronic illness does not own you. A chronic illness does not control you. It may be a part of your life but it is not, I repeat, NOT your life nor should it ever define you. Years ago, I was given a nickname and along with it, a definition:

WALLKILLER – (noun) survivor, odds beater, one who defies worldly constraints. One who adapts, improvises and overcomes. One who leaves the wall of convention in a crumbled mass as a symbol for those who follow.

When the world tries to label you, use WALLKILLER as a label instead. Find your way over, under, around or through. You are not alone. You have joined the ranks of many who have trod this way and many more to follow. You have been given a challenge; lean into it, grin at it, let it know you will make an object lesson out of it for others. I can say this because I have been there, I am there and no matter what happens I want you to remember one thing.

“The only limitations YOU have are those in which YOU impose upon YOURSELF.”

Share Your Thoughts. What walls has your chronic condition put up in front of you? What have you done to overcome them? Share your thoughts in the comments below or in our Chronic Conditions Community.

Posted by: WebMD Blogs at 11:40 am

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Wednesday, December 7, 2011

Giving Back

By Myrl Weinberg, FASAE, CAE

Over the past few months this blog has introduced us to many wonderful and touching stories.

We have learned about strong individuals and loving caregivers who have risen above the pain, and we’ve explored the nationwide networks made up of “the most amazing people in the world, who have become a second family.” We learned how important it is to “tell your story in an impactful and meaningful way,” and to seek support from patient advocacy organizations.

As we come to the end of 2011, many of us think about ways to give back to the organizations that have helped us over the past 12 months. How do we know which organizations will use our donations wisely? There are numerous worthy patient advocacy groups, and the National Health Council (NHC) recognizes that selecting which one to support can be a difficult decision.

One way to help you decide is to look for the Standards of Excellence® certification logo on an organization’s website. This certification demonstrates that a patient advocacy organization meets the stringent requirements established for members of the NHC.

The NHC Standards are aligned with, but more comprehensive than, the Standards for Charitable Accountability adopted by the Better Business Bureau’s Wise Giving Alliance. The NHC Standards are also unique to patient advocacy organizations. To be certified, an organization must pass a thorough analysis of its operational documents, such as bylaws, audited financial statements and annual reports.

There are many different ways to strengthen the patient community. Continue to share your stories and advice on this blog. Reach out to other patients in need of support. Volunteer your time and talents. And, if you decide to donate to a patient advocacy organization, look for the Standards of Excellence® logo on the organization’s website to ensure that your donation will be used efficiently and effectively for the good of patients.

More than 133 million people in the United States live with a chronic disease or disability, and the numbers are growing. Whether you have a chronic condition or not, your support of patient advocacy organizations helps people live better and healthier lives and advance the development of new treatments and cures.

Have a Wonderful Holiday Season.

Myrl Weinberg is president of the National Health Council (NHC), the only organization of its kind that brings together all segments of the health care community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. The NHC is made up of more than 100 national health-related organizations.

Posted by: WebMD Blogs at 4:10 pm

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Monday, December 5, 2011

Preventing Diabetes Complications

By George Segall, MD

The good news about diabetes is that with a healthy diet and lifestyle, along with appropriate medications, the disease can be controlled on a regular basis. Over time, however, many patients with diabetes experience complications such as high blood pressure, trouble with their eyesight and foot issues.

By being in tune with your body, you may be able to recognize some of these changes. A good working relationship with your doctor is also helpful. In fact, there are several advances in molecular imaging that physicians can use to help diagnose diabetes-related complications at an earlier stage.

People with diabetes are estimated to be 2-4 times more likely to develop cardiovascular disease than the general population. Unfortunately, many times heart disease occurs without any warning signs in patients with diabetes. With myocardial perfusion imaging—a type of molecular imaging—physicians have an effective screening tool for patients who may be at high-risk of developing heart disease, allowing for earlier and more effective treatment.

Foot-related complications are another problem for patients with diabetes. Diabetes can cause nerve damage and reduced blood flow to the bones and tissues of the feet, leaving patients vulnerable to infection. New molecular imaging techniques can detect infection at an earlier stage. By catching infection early, treatment can be prescribed sooner, sparing patients from amputation.

Disease management is a part of everyday life for patients with diabetes, and prevention is key. Being aware of your risk factors for diabetes-related complications and working with your doctor to mitigate them is crucial to ensuring a healthy life. If your physician notes that you are at-risk for a specific complication, there are options available for more information about your condition so you can plan appropriately.

George Segall, MD, serves as chief of the Nuclear Medicine Service at the Department of Veterans’ Affairs Palo Alto Health Care System, Palo Alto, Calif., and professor of radiology at Stanford University, Stanford, Calif. He is currently president of the Society of Nuclear Medicine and has published more than 60 peer-reviewed journal articles and authored six book chapters on nuclear and molecular imaging.

Do you know someone who struggled with diabetes? How did they handle the complications of the disease? Share your thoughts in the comments below or in our Diabetes Community.

Posted by: WebMD Blogs at 11:43 am

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