A Different Normal

By NeShell Monroe

NeShell Monroe is a patient-advocate with the American Kidney Fund. Last month, NeShell traveled to Capitol Hill for the second year in a row to speak with her members of Congress about kidney disease awareness and prevention. NeShell has been on dialysis for more than 30 years and is currently on peritoneal dialysis.

Finding out you have a chronic condition is life-changing. I will never forget when I received the news that my kidneys failed. I was only 10 years old and lying in a hospital bed when my doctors told me my kidneys were no longer functioning and I had to go on dialysis. Growing up, I spent countless hours in the hospital, doing my junior high school course work from my hospital bed. When I was 14, I had the best four months of my life when I received a kidney transplant. Unfortunately my body rejected the transplant and I was forced to go back on dialysis. Now at the age of 42, I’m still living with chronic kidney disease with daily dialysis treatments- nearly my whole lifetime spent hooked up to a machine.

Being on dialysis for decades has been difficult, but I have learned to never give up and to always keep fighting. I continued school through college and worked fulltime, which has given me a sense of normalcy and determination to not lose hope. I try to surround myself with positive people; my family, friends and church support me in my fight against kidney disease. And I’ve found a sense of purpose as an advocate for the American Kidney Fund, which allows me to share my story with others in order to raise awareness for this often-preventable disease.

My journey toward advocacy began years ago when I was a teenager. During my transition from a children’s treatment center to an adult treatment center I found it shocking to learn that I knew more about my treatments and medications than many of the adult patients and technicians. Since then, I’ve grown increasingly passionate about educating others about kidney disease awareness and prevention.

In March I was honored to travel  on behalf of the American Kidney Fund to Capitol Hill for the second year in a row to join other patient-advocates from around the country that had the same mission:  to advocate for important legislation that would affect the nation’s dialysis and kidney transplant patients. I met with the offices of Representatives Al Green (D-TX) and Sheila Jackson Lee (D-TX), and Senators John Coryn (R-TX) and Ted Cruz (R-TX) to share my struggles with kidney disease, highlight the negative effects Medicare cuts would have on patients with chronic illnesses, and to urge them to raise awareness among their constituents. The more people we can make aware of the risks, the more cases we can prevent.

Meeting with the offices of my Congressional leaders was a life changing experience. They listened to my story and asked questions about the challenges of kidney disease. I felt like they were very open to talking about our mission. Many of the staff members joined us later that afternoon for the American Kidney Fund’s Kidney Action Day and participated in a free screening for kidney disease.

I believe that education and prevention are the best ways we can fight this devastating chronic condition. I urge you to get tested for kidney disease and to visit the American Kidney Fund’s Pair Up Promise for tips in staying healthy. I also encourage you to find your voice and make a difference – spread awareness of chronic conditions in your community. Together, we can make a difference for everyone who is living with a chronic condition.

By Thomas Orton

Thomas Orton is a professional novelist and freelance writer. He is author of the blog Rogue Rhythm: Parkinson’s and the Rest of Life. His novel, The Lost Glass Plates of Wilfred Eng, earned critical praise nationwide. He is also the author of Kenneth Callahan, an art book about the renowned Northwest painter. As a freelance writer, Orton has worked extensively in the medical and health care fields. He was diagnosed with Parkinson’s in 2009.

One Saturday morning a while back, my good friend Marilyn and I were talking on the phone. Marilyn had recently had a shoulder replacement and found it difficult adapting to things like putting on a jacket and brushing her teeth left-handed.

“You must be dealing with stuff like this all the time,” she said.

I told her that the stiffness and shaking from my Parkinson’s had lately been making it difficult to shave but that choking way up on the handle of the razor had made it much easier–and safer.

“That might work with my toothbrush,” Marilyn mused. She was silent for a moment, then asked, “I wonder how women with Parkinson’s –with stiff, shaky hands –how do they put on lipstick? Or eyeliner for that matter? Eyeliner could to get downright dangerous!” she added.

The question intrigued me enough to go online, after we hung up, to see if I could find an answer to her question. I found that there were precious few grooming tips for the chronically ill. Maybe people assume we have more pressing issues on our minds, like just surviving. But chronic illness shouldn’t stop anyone from enjoying his or her life and wanting more than “mere survival.” In the the normal course of things, vanities provide us with confidence and grace, two things people with chronic diseases badly need.

Focus On Faces

Disease may be harder on women exactly because it can take a toll on personal beauty. We all know that our culture expects a lot of women in terms of appearance, and when illness intrudes over the top of such demands, it’s hard to keep up.

The face seems to me to be an area of particular vulnerability. With makeup, a woman can alter the way she meets the world or, possibly, divert or even hide from its raw, hyper-critical eye. Some women couldn’t care less about eye shadow and shades of rouge. But if you suddenly had to do without such familiar, confidence-building camouflage and were saddled with a chronic condition, how much more difficult would it be stepping out your front door every morning?

I hear some women objecting, “Parkinson’s is humiliating enough. I don’t want to make it worse with crooked makeup. Or if I do manage to go out in public looking great, I could easily ruin it by stumbling or slurring my words and having people think I’m drunk. Better to forget about dolling myself up and just move on.”

There’s at least one flaw in that thinking: Parkinson’s is a disease of degrees, of inches. For the most part, it changes things gradually. So should we.

From Despair Comes Invention

Chronic disease can cut a swath through our lives as wide as the path of an Oklahoma twister. The good news is it leaves us alive. That’s also the bad news. Right from the start, it is difficult to maintain a semblance of pride and dignity.

Even so, the desperation that goes hand in hand with chronic illness can kindle inventiveness. In my early 50s, I took up jumping rope at my gym. I got pretty good and – okay – I liked showing off. When I was diagnosed with Parkinson’s Disease, I quit in a fit of self-pity. A year later, I picked up the rope again. I’d lost stamina and and timing and could barely get the rope under my feet.

I kicked myself for quitting. Then I started making my own ropes to accommodate my new shortcomings. I’m nowhere near where I was – jumping now is more like meditation than exercise. It’s a way of practicing a new kind of patience, one that I have a feeling might become useful in an uncertain future.

Every resource is worth fighting for. Clearly, you don’t want to obsess, but neither should you let go of something you love before you absolutely have to. Think it through. Talk to people who understand what power there is in the details. Most important of all, take your time. Chances are, when it’s time to give up the last of your vanities, you’ll be ready to let them go.

By John Schall

John Schall is a public policy/communications professional with noted expertise in policy fields, including healthcare, labor, education, economic development, taxation, and budget policy. He became CEO of the Caregiver Action Network in June 2012. Prior to CAN, Mr. Schall was Deputy CEO of the Parkinson’s Action Network.

“Mom had a stroke,” my sister’s voice was telling me over the phone.  At first, I did not quite comprehend the message.  My father was 93 years old and my mother was his caregiver, so bad news about my father might have been somewhat expected.  But my sister was telling me that it was my 80-year old mother who just had a stroke, not my 93-year old father. That was definitely unexpected.

Instantly, I learned a couple of things about family caregiving.  One, that it is stressful – so stressful that it can take a large toll on the caregiver’s own health.  And two, that it can cause a chain reaction – because once the health of the caregiver has been affected,  someone else has to step in to take care of both the caregiver and the loved one they were caring for. So, caregiving shifted from my mother to the next generation — me and my siblings — most of us living hours away from our parents’ house. I was now one of those adult children trying to help care for their parents from afar:  I live in Washington, DC; my parents in Michigan.

As fate would have it, ten months later I became CEO of the Caregiver Action Network (CAN).  I then quickly learned a couple of other interesting things about family caregiving:

• I was not alone.  There are 65 million family caregivers — one out of every three adult Americans — caring for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.

• Caregiving wears many faces.  Family caregivers range from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease.

Both of these points became clear to me my very first day on the job.  I was one kind of caregiver:  one who was new to caregiving and lived in another state.  My predecessor in my job was another kind of caregiver:  she has been caring for her husband with MS for decades.

That’s why CAN built a new powerful website that allows family caregivers to access information, tools and educational materials based on the type of caregiving they are providing.  We tailored the resources to four profiles of caregivers:  1) those who are new to caregiving; 2) those who have been a caregiver for years; 3) those caregivers who have full-time jobs; and 4) those who are helping care for their loved ones from afar.

Family caregiving really does wear many faces.

The Caregiver Action Network (formerly the National Family Caregivers Association) is the nation’s leading non-profit family caregiver organization providing education, peer support, and resources to family caregivers across the country free of charge.  www.CaregiverAction.org

By Eric Dolby

Eric Dolby suffered from kidney failure at age 37 and has been on dialysis for seven years. He is currently a patient-advocate with the American Kidney Fund (AKF). Eric was awarded the “Hero of Hope” by AKF in October for his efforts to educate others in his community about kidney disease awareness. This month Eric will return to Washington, D.C. for AKF’s 4^th Annual Advocate Fly-In where he will talk to members of Congress about the importance of kidney disease awareness.

We are all too familiar with the dashboard warning light telling you it’s time to take care of your car. Have you ever wished that life had unmistakable warning signs, especially when it comes to your health? What is so frightening about kidney disease, the “silent killer,” is that in early stages, there are virtually no warning signs or symptoms — no warning lights. But there are risk factors, and knowing them can save your life.

As a registered nurse, I knew the risk factors of kidney disease: diabetes, hypertension and having a family history of the disease. The first kidney disease warning sign in my life was having a family history of the disease – 12 of my cousins currently live with end stage renal disease (ESRD) and 13 aunts and uncles who had ESRD have passed away.

My second warning sign was a diagnosis of uncontrollable melatonin hypertension in 2000. I heeded these warning signs, and I made positive changes to live a healthy lifestyle. For years, I consistently exercised, ate healthfully and took medications to control my blood pressure, but it was too late. In 2005 at age 37, the silent killer was knocking on my door. My kidneys failed, and I knew life was never going to be the same again. These days I spend three nights a week, from 8:15 p.m. to 5:00 a.m., at the dialysis center hooked up onto hemodialysis, which is a treatment that filters waste products out of my blood.

While living with kidney disease has affected my life in ways I never knew possible, I’ve learned nothing is impossible and together we can win the fight against this silent killer through kidney disease education and prevention. As a patient-advocate for the American Kidney Fund, I am turning my disability into an opportunity to educate others in my community who are at-risk for kidney disease. With as many as 31 million Americans with kidney disease and as the ninth leading cause of death in the United States, I believe it’s important for people to know that this silent killer is often preventable. In March 2011, I traveled to Washington, D.C., and spoke with my Congressman about the importance of kidney disease awareness and education. And I will be returning to the nation’s capitol again this month, as part of National Kidney Month, to continue encouraging people to learn if they are at risk and to take preventative measures.

My grandfather use to say to me, “Once you have gained knowledge, you are responsible for what you choose to do with that knowledge.” His words still resonate with me today as I live my life with kidney disease and I hope they will with you too. I hope my story has inspired you to take charge of your kidney health by remembering the risk factors of kidney disease and getting your kidneys checked.  Together we can overcome this silent killer.

By Maya Brown-Zimmerman

A few years ago, my husband Mark & I went to lunch with friends of ours. The wife, like me, had a genetic disorder. We got into the conversation of why our husbands married us, when they could be with someone who had a more perfect, always-working body. I wondered how did/does Mark view Marfan that makes him want to stay, when it’s made other guys run away? So, I asked him. I thought his answer was worth sharing, so I asked him to write a post about it. This is his story.

I always dated tall girls.

I was the shortest student my age throughout all of elementary school, and the situation did not improve much in the following years, so pretty much everyone looked ‘tall’ to me. Nonetheless, I always dated the tall girls.

I guess that’s why, to me, pictures of Maya and me from some of our early dates, when she would show up in high heels and stand — literally — head and shoulders above me, really do not seem all that unusual.

I actually don’t remember when she first mentioned “Marfan syndrome” (or, as I incorrectly called it for at least a year, “Marfan’s”), as it was never a game changer for me, just another data point. I certainly did my research, starting from Wikipedia and then digging deeper wherever I could. I wanted to be able to join dialogues between her and her doctors on an educated level, to be able to logically take and argue her side when a doctor brushed off an event, and to understand the many choices she made about her health.

We hadn’t been dating too long (well… 2.5 years?) when our first emergency room trip together occurred. While dancing at our university’s winter formal in downtown Cleveland, Maya began to experience a rapid and arrhythmic heartbeat, which led to us spending the rest of the party at a nearby hospital. Though nothing came out of the late-night-into-the-morning stay, the five hours waiting, talking, and playing card games in a room at the ER turned out to be one of our most memorable and most enjoyable dates.

Since then, the hospital stays and doctors visits have come and gone. And we have had plenty of memorable dates outside of the hospital, as well. Our life is jobs and kids and families and chores, like the lives of so many others, just seasoned with a dash of medical activism and a sprinkling of Marfan friends (our “Marfamily”).

We recently saw our oldest son start preschool, and our younger son – who also has Marfan syndrome – is following closely in his older brother’s footsteps. Children with special needs can pose an enormous set of challenges for a family, but seeing Marfan play out in both mother and son has strengthened our family bonds as they share doctors, hyper-mobile dances, and the difficulty of finding clothes that fit.

We have had our share of scares, from medical speculation (“I think Maya may not have Marfan syndrome, but rather …. “), to truly serious issues (we keep an emergency room bag packed), to outright misdiagnoses (“I think it’s a dissection! … Oops! No it isn’t. Again.”). But we address these events as they come, rather than living in fear of them. Before we were married, we were handed some particularly frightening – though ultimately incorrect – medical news. Our resolution at that early stage to stand side by side and handle such situations day by day set a firm foundation that has not weakened over the years.

Marfan syndrome does make every day harder than it may have been, but it is a part of who Maya is, through and through. And now, it is a part of me, too.

And I wouldn’t trade it for the world.

By Betsy de Parry

“You have cancer.” Eleven years ago, I heard those frightening words. It was follicular non-Hodgkin lymphoma (FL), considered incurable. Most treatments only slow the disease but eventually, it returns and requires stronger drugs. Remission periods decrease with each subsequent treatment. Eventually, no options remain.

In my case, two back-to-back chemotherapy regimens failed even to slow my disease. Nine months after diagnosis, I settled into a tiny hospital room for a different kind of treatment that had just become available—radioimmunotherapy (RIT), which uses targeted radiation to kill lymphoma cells. While scientific studies show that RIT produces more complete responses and longer durations of response than any other treatment, it’s an option that is all too often ignored and frequently misunderstood.

However, six weeks after my RIT treatment, there was no evidence of disease. Officially, I was in remission, but remission, to me, meant that I was in limbo, somewhere between the worlds of sickness and health. Periodic scans would determine to which world I would return. I was forced to learn to live with uncertainty as my constant companion. And that’s easier said than done.

Every one of us would love a guarantee that cancer will never recur, but no such guarantee exists. As long as we’re alive, illness—of any kind—is a risk of life itself and death will always be a certainty.

Eventually, I concluded that what I do between now and then is far more important than worrying about the inevitable. And I accepted that cancer will always be part of my life. But it will never define it. I refuse to be paralyzed by what-if’s or to live in anticipation of the inevitable.

Instead, I learned to plan—to live—with purpose and priority alongside that which cancer forced me to accept: that we can’t always shape our own destinies nor are we always in control of our lives, much as we’d all like to believe. And quick, concrete answers and predictable outcomes aren’t always possible, much as we all want them.

But cancer also taught me that impossible is only a word that may or may not be relevant. And it gave me the freedom to savor the present like never before. After all, none of us knows what’s around the next bend in life, so why not enjoy the present? A chart stamped “cured” isn’t a prerequisite.

Years passed. Scans became less frequent. I remain healthy—and deeply grateful that RIT became available in the nick of time.

I’ve met others who took RIT in clinical trials as long as 17 years ago and who—like me—have been living healthy lives since. Are we cured? We’re certainly living like we are.

Betsy de Parry is the author of Adventures in Cancer Land and the author of Candid Cancer, a column for AnnArbor.com. She is a frequent speaker to healthcare and patient groups and a frequent participant in awareness, educational and advocacy efforts. She serves on the Society of Nuclear Medicine and Molecular Imaging’s Patient Advocate Advisory Board.

By Maya Brown-Zimmerman

It’s resolution season, and everywhere I look it’s: “How to lose 10 lbs in 2 weeks!”, “Follow these 10 easy exercises for rock-hard abs!” “Start training for a 5K today: it’s easy!” The headlines offer simple solutions, but getting in shape when you have a chronic illness can be a little more complicated.

I have Marfan syndrome,  and with that comes activity restrictions. I’m not supposed to get my heart rate over 120 bpm, play contact sports, or engage in any isometric activities (that’s where you’re holding your breath and straining, like in weight-lifting, push-ups, etc.). My doctors have told me a good rule of thumb is that if I can’t carry on a conversation while exercising, I’m doing it too hard. Well. That seems to rule out a whole lot of ways to exercise, doesn’t it? But, at the same time, people with Marfan and related connective tissue disorders are told that exercise and overall fitness is very important to keeping our hearts healthy and pain levels down. I’d imagine many of you have heard a similar edict, even though your diagnosis may be different from mine.

What I realized is that this forces me to rethink fitness. I acknowledge and accept that I am never going to have the tight abs or sculpted biceps I see on the models cluttering my Pinterest or Facebook feeds. However, I can adapt a definition of fitness to my own abilities.

For example, I can change the way I eat. Easy, simple meals and snacks don’t have to equal unhealthy foods. I can keep fruits and veggies handy, and I make good use of my crockpot. Toss some chicken and veggies in there and a few hours later, dinner is ready with no real work on my part! I also try to get moving. It’s easy to set up a little writing center for myself with everything I need within arms’ reach, but it’s better if I force myself to get up to get things, take the kids for a short walk, or park a few spaces farther than I would normally. Getting outdoors, even if it’s just to run some errands, brightens my mood and a better mood can decrease pain levels and encourage greater activity.

The important thing for me is not to compare myself with others and to be patient with myself. I set small goals to build up confidence and ability as well.

How do you approach fitness?

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

By Sona Mehring

A community is more than just a group of people living in a particular area. A community is a group of people we lean on when times are tough; our friends, family, and neighbors who are there for us when we need love, support and encouragement.

We recently sent a request to CaringBridge users asking them to share the one word they would use to describe their community. Some of the most common responses were:

• Loved
• Connected
• Supportive
• Helpful
• Blessed

You can see a word cloud we created with more responses on the CaringBridge Facebook page.

Think about the people in your life who make up your community. People who have helped you during your health journey with rides to the doctor, home-cooked meals, or just a shoulder to cry on. What word would you use to describe them?

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit offering many ways for people to care for each other during any type of health event. CaringBridge offers personal Sites, a SupportPlanner and an online volunteer community, the Amplifier Hub. Follow Sona on Twitter – @gogosona.

By LaVarne A. Burton

LaVarne A. Burton is President and Chief Executive Officer of the American Kidney Fund (AKF), a nonprofit organization whose mission is to fight kidney disease through direct financial support to patients in need, health education, and prevention outreach. Ms. Burton has led AKF since October 2005, and today AKF is the nation’s leading source of charitable assistance to dialysis patients. Last year, 90,000 people—nearly 1 out of every 4 dialysis patients in the United States—received financial assistance from AKF for costs associated with kidney failure. Learn more at www.kidneyfund.org.

It’s that time of year again, and the holiday season is upon us. The tree has been decorated, the menorah is lit, and family get-togethers are just around the corner. While holiday reunions are a great way to bring the family together and reflect on the past year, they can also be plagued with awkward questions. Questions like: “Are you still single? When are you getting married? Did you get that job you were talking about?”

As you spend time with loved ones this holiday season, consider steering the conversation to a more important and productive topic: your family’s medical history. Connecting with family members during the holiday season and asking about their medical history can be a powerful way to identify and prevent chronic conditions that are prevalent in your family.

While awkward moments are part of life, asking about your family’s medical history doesn’t have to be. In fact, learning about a family illness early on can help you identify your risk factors and recognize early warning signs.

So as you’re catching up with relatives you haven’t seen in a while, why not ask them about their health and whether they have conditions that may run in the family? If you aren’t sure how to start the conversation, don’t worry. Below are a few questions to help get the conversation on family medical history going:

·         Are there any chronic conditions that seem to run in our family?

·         Do you have any of them?

·         What are some of the symptoms you had?

Who knows, your family might just get excited about learning and sharing this information. Being aware of the chronic conditions that run in the family can be a big step toward improving your own health, and the health of your loved ones.  For example, many people do not know that diabetes and high blood pressure can lead to chronic kidney disease (CKD), and as is the case with so many chronic illnesses, a leading risk factor for CKD is having a family history of the disease.

At the American Kidney Fund, we’re working to raise awareness about the preventable nature of CKD.  If your family has a history of CKD, it is important to monitor your own kidney health through simple medical tests. CKD is just one example; the same can be said for so many of the chronic illnesses that run in families.

Remember, your family can be an important tool for understanding the future of your own health. When getting together with family this holiday season, don’t be afraid to ask questions about your family’s medical history.

By Sona Mehring

At the end of the year, we usually take time to look back and reflect on what we’re thankful for. But I think any time of year is a good time to thank, support, educate, and advocate for the more than 65 million family caregivers in the United States.

The National Family Caregivers Association encourages family caregivers to take four steps every day to act on behalf of themselves and their loved ones, and to remove barriers to health and well being:

• Believe in yourself.
• Protect your health.
• Reach out for help.
• Speak up for your rights.

Many family caregivers are uncomfortable thinking of themselves as caregivers and don’t expect any kind of acknowledgement for their work. But I think it’s important to take the time to let them know that their work is appreciated.

How do you thank the caregivers in your life?

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit offering many ways for people to care for each other during any type of health event. CaringBridge offers personal Sites, a SupportPlanner and an online volunteer community, the Amplifier Hub. Follow Sona on Twitter – @gogosona.