It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Christmas TreeChanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By Menorahsharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and FullSizeRender (2)monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.urine container

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas bp cuffstation? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

portal_in_time_cover_for_kindleI just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.IMG_2979

Until next week,

Keep living your life!

How Sweet It Is… Or Is It?

Thanksgiving is over and I thought I’d learn from that not so successful experience (as far as energy and proper eating only – it was a delicious experience having my step-daughter to ourselves), but I’m not so sure I have.  Hence, excerpts from two helpful articles.  When I scan the internet for articles to present on the blog, I usually end up finding some that help me with my own difficult areas.  Odd how the universe takes care of you, isn’t it?  I raised my children to believe that things happen for a reason whether we know the reason or not, and am so gratified to hear them remind me of that time after time.  You’ll understand as you read today’s blog.

Fructose Raises Risk for Kidney Disease, Hypertension

By David Liu, Ph.D.

 Saturday, Nov 19, 2011 (foodconsumer.org) — Eating too much fructose may cause a series of diseases including fatty liver, insulin resistance or diabetes, dyslipidemia, hypertension and kidney disease, according to a report in the Nov 2011 issue of International Journal of Nephrology. In the report, Marek Kretowicz of Nicolaus Copernicus University in Torun Porland and colleagues reviewed 62 studies and concluded that studies suggest that excessive fructose intake may be one of the causes for the current epidemic of obesity, diabetes and cardiorenal disease. Fructose is a monosaccharide present in sucrose (beet sugar, cane sugar etc), high fructose corn syrup (hfcs), honey and fruits.
 
The researchers cited studies as suggesting that not all fructose sources are the same.  Not all sources of fructose cause diabetes, kidney disease and cardiovascular disease. The researchers said natural sources of fructose such as fruits are rich in beneficial nutrients like antioxidants, vitamin C or ascorbic acid, polyphenols, potassium, and fiber that may counter the adverse effect of fructose. Previous studies found fructose intake was not correlated with increased risk of high blood pressure or hypertension in a population in which much of the fructose intake came from fruits.  However, the association was found significant when the fructose from fruits was excluded. According to the report, fructose can cause fatty liver and glycogen accumulation, insulin resistance and islet dysfunction, obesity, hypertension and vascular disease, and kidney disease.  {Me:  Get the message?  Fruit, not candy or cakes.  Now where have I heard that before?}
 
You can find the article at: http://www.foodconsumer.org/newsite/Nutrition/Food/fructose_kidney_disease_diabetes_hypertension_1119110936.html
 
The following is an excerpt, but it just might be worth your while to read the entire article at: http://www.kevinmd.com/blog/2011/11/living-chronic-illness-holiday-season.html?utm_medium=twitter&utm_source=twitterfeed  I know a great deal of my problem with celebrations is that, not only do others not understand that I don’t have the energy I used to (say, isn’t that true of a great many people who are not ill, simply aging?), but half the time I don’t, so the day of the dinner, party, etc. comes and I’m too tired from the preparations to enjoy it.  I’ve got to grow up and stop this ridiculous cycle.  Thank you, Toni.
 

Living with chronic illness during the holiday season

….Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to. That crisis can come to a head during the holidays when people’s expectations of one another are high and when stress levels for everyone are likely to be off the charts for any number of reasons—health, financial, relationship issues. ….when the holidays arrive, you’re suddenly thrust into the middle of a lively and chaotic social scene where you’re expected to participate in a range of activities, often for days in a row. A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations….If you’re one of the many people with chronic health problems who don’t look sick, the initiative is with you to make your condition visible. Here are some suggestions for helping loved-ones understand what your life is like and for giving them a heads-up on what to expect from you during the holidays.

Share information with them from the Internet or from books

Often the best way to educate loved-ones about chronic pain and illness is to use a neutral source because it takes the emotional impact out of the communication….. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition {like mine!}, photocopy the pages that cover what you’d like them to know about you. In your accompanying note, keep it “light”—you could joke that “there won’t be a test.” But also make it clear that this favor you’re asking is important to you.

Write a letter

….Without complaining, express how difficult it’s been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays….I would end by telling them what to expect from you during the holidays—that you may have to skip some events, that you may have to excuse yourself right after eating to go lie down, that you may have to come late and leave early. In my experience, spelling out my limitations ahead of time is helpful not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting it….

Find that ONE ally and enlist his or her help

….It’s so helpful for me to be “prompted” by my ally because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on. Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. Think long and hard before you decide there’s no such person in your life.

In the end, you may have to recognize that some loved-ones may never accept your limitations

….Just as you can’t force people to love you, you can’t force people to accept you. But getting angry at them just exacerbates your own symptoms. That’s why it’s important to protect yourself from allowing their lack of understanding to continually upset you. Think of it as protecting yourself from another chronic condition: chronic anger….

Thank you to both contributing authors for helping me understand my life at this time of the year.

Shifting gears here, all.  Libre (see the blog roll) has asked me to host a tweet chat on January 9th from 8-9 p.m. EST. I’ll throw out some topics and you tweet your feelings or thoughts about them.  This is a first for me, so thank you Mandy from Libre for making certain my other foot followed me into the 21st century.  But wait!  That’s not all! (Do I sound like 3 a.m. tv commercials?), there have been book signings in the east valley and the west valley – locals will understand I mean the Valley of the Sun or Phoenix and the surrounding areads, everyone needs to make plane reservations – but not in the south valley.  That will soon be remedied: I’ll be signing at Bookmans, 1056 S. Country Club Dr., Mesa on January 14th from 1-3.

Have a wonderful holiday, whether you celebrate Christmas, Chanukah (tonight is the first candle lighting), Kwaaza or another I haven’t discovered yet.  How incredible it is that it’s already this time of year.

Until next week,

Keep living your life!