Ageing Out

Watching your children turn into adults is an interesting process. I suppose it hits all of us differently and certainly each child is different. While my daughter, Molly, has been independent for some time now, I noticed during this holiday season that she really doesn’t want me to mother her anymore…at all.

She doesn’t want my help in packing her food or vetting the choices when we are guests in somebody else’s home. This is especially hard when the personal and professional collide.

Molly just turned 21 and will graduate from college in only a few months. I am about to schedule her final check-in at Children’s Hospital of Philadelphia (CHOP) where she will get her periodic round of blood work and she will visit with the registered dietitian to review her eating habits.

Having a healthcare team that I can put my complete trust into has been such a comfort to me over the last five years since Molly’s diagnosis. I know that I have been blessed with easy access to a great team of physicians, nurses and dietitians. I can only hope that Molly is able to find a new team of doctors that share knowledge without speaking down to her, listen to her instinct (which is usually right) and value her as a true partner in her care.

NFCA President Alice Bast presents Dr. Ritu Verma with an honoree award at our annual fundraiser, Chez Gourmet.

Thankfully, my professional relationship with the team at CHOP will continue. I have come to rely on feedback from Dr. Ritu Verma, a member of the National Foundation for Celiac Awareness’ (NFCA) Medical and Scientific Advisory Council and her nurse Patty Bierly when we develop patient materials, need expert advice on patient questions or need to bounce new ideas off someone in the field who sees patients every day, all day. Their patients are from all walks of life and live diverse experiences with a wide range of personal perspectives.

Dr. Ritu Verma with my niece Temira

My six year old niece now visits the CHOP team since her celiac disease diagnosis last year. In seeing my family through two diagnoses, and in observing many different diagnoses within my family, from lactose intolerance to cancer, here are my tips to ensure a positive experience with your healthcare team.

1)      View your healthcare providers as a team. Each specialty may provide a unique piece of the puzzle, but make sure you provide your entire health history to each provider. Symptoms may or may not be related, but the more thorough you can be, the better.

2)      View yourself as the captain of the team. Or the most valued player. Ask questions and make sure you fully understand what your healthcare team is saying. If you have a provider that doesn’t have the patience to listen or the vocabulary to respond in a way you can understand, find another provider.

3)      Be diligent. Don’t wait for the answers to come to you. Make sure you know all the tests that are being ordered and when they will return. Call for results – every day if you have to. Review the results yourself to ensure you understand them. Learn when new medications, supplements or dietary modifications are supposed to take effect.

4)      Have a good attitude. Smile therapy works. If you can see the glass as half full you will be more content with the life that you have. It was the only one you were given, so make the best of it for you and for those around you.

When you are an educated and empowered healthcare consumer, you can more easily navigate what can be a treacherous road of obstacles. And you can conquer the course.

– Jennifer

Finding Self-Empowerment despite Limitations

The following guest post is from National Foundation for Celiac Awareness (NFCA) volunteer, Candice Clifford of Embrace G-Free.

What does, “expect the unexpected,” mean to you? This was an exact interview question, which was given to me during my international service trip (ISP) interview.   As I heard these words I felt both fear and a thrill of excitement.  However, as I thought more about this central ISP theme, I began to realize this phrase could describe my life for the past eight years.

I don’t understand why certain events have happened in my life, but I certainly know that each hardship has taught me valuable life lessons. While dwelling on the “why question” was a part of my grief process when I was first diagnosed with non-celiac gluten sensitivity (‘gluten sensitivity’), I quickly realized this was not going to help me live my best life.

As Robin Roberts of “Good Morning America” says, “make your mess your message.” Whether big or small, we all have our own challenges.  In the end I truly feel that you will not be defined by your “something,” rather people will remember you for what you did with your life after you faced adversity.

That’s me starting my journey of empowerment (Keep reading, I’ll explain).

After I was diagnosed, I was full of fear. Food, going out to eat and getting sick again were fears hat controlled my life. However, in 2011 I made a choice to make a change by starting my blog, Embrace G-Free. Not only did this help get me back cooking in the kitchen, but it also empowered me.

Empowerment is one of the words which is continually tossed around in my counseling classes. However, I truly believe empowerment is a concept that you can’t fully understand until you personally experience it.   As a future counselor I feel blessed that I will have the opportunity to help my clients become empowered. However, it is possible to discover self-empowerment without the guidance of a professional.

One of the best things you can do to achieve self-empowerment is set a goal; big or small, size doesn’t matter. What makes the difference is your attitude. Throw the self-doubt out the door. “I can’t” isn’t an option. By no means am I saying you will achieve all your goals. I for sure haven’t; failing is part of life.  It is possible you may discover a barrier which prevents you from achieving your goal. However if you take all the proper steps and know you did everything in your power to try and achieve your goal, consider it a success. In taking action rather than letting your dreams pass you by, you will begin to feel more empowered.

If you haven’t picked up on it by now, self-empowerment is something I am so passionate about because becoming empowered has moved my life in such a positive direction and has provided me with experiences which I am forever grateful for. Finding empowerment through my diagnosis was one of life’s “unexpected” moments, eventually leading me to achieving a goal which I was ready to give up on. However, a long-term college dream was achieved this past May when I was blessed to go on an international service trip to El Salvador.

Me and my fellow students in the El Salvador ISP group

It was a long process to see if this goal could even be achieved. I started back in April 2012 and continued when I returned to school in September to make sure the sites could accommodate my needs. It was one thing to want to go on an ISP trip, but I needed to ensure I could do it safely. Patience, diligence, determination and an incredible program director helped me get through step one. Once I got the green light, it was onto getting over the hurdles of application selections and an interview process.

I will never forget the day I received the e-mail notifying me that I was selected to travel to El Salvador. I cried and would have screamed if I wasn’t at work. The planning process was incredible and in May 2013, my group and I were ready to head off to El Salvador.

How amazing is that view?

While many people see a service trip as a way to serve others, I can honestly say that the people and experiences I had taught me more than I could ever give to the people I served. Although I felt empowered prior to ISP, this experience truly allowed me to take my feeling of empowerment to a new level.  Not only was I faced with the challenge of new food allergy diagnoses a month before the trip, but while in El Salvador all my fears that I had prior to leaving happened. Despite this, I was OK.

I can honestly say that the people and experiences I had taught me more than I could ever give the people I served.

I truly believe it was my individual choices, which helped me overcome the challenges I faced. For example, rather then crying when I walked in the first night and realized I couldn’t eat the main meal, I took a deep breath to calm myself down, told myself it was going to be OK, and made an almond butter sandwich.  Overall that was one of the only meals I couldn’t eat and when I was unsure, I did without and turned to a safe option I brought with me.

After going on this trip I really began to realize even though food is our medicine, it doesn’t have to make or break our experiences. Of course enjoying some of the cultural dishes was wonderful and delicious, however, when I look back 20 years from now, I will not remember the foods I ate. Rather my memories will be of all the wonderful relationships I built during those 7 special days in El Salvador.

Food is our medicine, but don’t let it stop you from achieving your goals.  Become Empowered!

– Candice

About Candice Clifford & Embrace G-Free

Visit Embrace G-Free where you can find empowering tools to live your happiest and healthiest gluten-free life! Browse through great recipes, product reviews and helpful resources. Candice Clifford started Embrace G-free in January 2011, after being diagnosed with non-celiac gluten sensitivity. Follow her journey as she rediscovers her passions for baking and cooking. Candice shares her story with others to spare them from years of misdiagnoses and to inspire hope.

Follow Candice on Twitter (@CandiceRose90) and like Embrace G-Free on Facebook.

I Did It!

Such a buoyant cry of delight!

This past weekend, I visited my family in Virginia which really means I went to see my two small grandsons: Max, age 2 ½, and Mason, 15 months.  Yes, they are terribly cute and amazingly clever little boys!

To keep Max amused while I was making lunch, I suggested that he work on a puzzle. It was one of those lovely wooden ones with farm animals and tractors.

Max went about his business of puzzle assembly and I turned to the niceties of kids’ lunches. All quiet on the home front.

Suddenly, I heard, “Nana, I did it!” Hands raised as if celebrating a touchdown, Max had a moment of total joy and triumph.

Little Max. Isn't he a doll?

If you can believe it, his accomplishment made me think of all of the folks who have been struggling with undiagnosed celiac disease and, having finally learned the cause of their suffering, are moving into a reclaimed gluten-free life. I guess it was being in the kitchen that brought this association to mind.

We all know that this is not the easiest transition to make. After acceptance comes the search for how best to live happily in a new world. Lots of questions about what is gluten-free, followed by the search for tasty and healthy products.  At first, most women wonder about the hazards of dining out and wonder if they will ever again enjoy a lovely evening on the town. Men want to know what beer they can drink. Yes, these sound like stereotypes, but based on questions that come through our info line (info@celiaccentral.org), they’re true!

Before long, with help, the gluten-free diet becomes routine, and life improves.  And, one day, there comes a moment of realization that, in fact, a shift has been made to a “new normal.” In short, they did it.

Lunch over, Max enlisted me to “play soccer.”  His parents are athletes, so Max has been kicking the soccer ball around since he could walk. He has a child-sized goal and loves it.

So, out we went to pass the ball around and see how we would make out. Within minutes, Max had the ball in the goal.

You guessed it. “Nana, I did it!”

What is your “I did it!” moment?

-Nancy

If you have a personal victory related to your health recovery, whether it’s a new outlook, a change in habits or a successful business venture, share it on the National Foundation for Celiac Awareness’ Celi-Acts page.

If you have a question about the gluten-free diet, submit it to Ask the Dietitian.