Stand Up For Your Health

     On Friday (April 23rd) I was watching an episode of the doctors as they discussed an issue that is the main topic and reason for this blog - standing up for your health and your family's health. They discussed being an advocate for your children, especially with regards to autistic children, but the points discussed are relevant for anyone advocating for their health or their family's health.


     Areva Martin, one of the guests on the show, is a lawyer and mother of an autistic child who believes strongly in being an advocate for yourself and your child. In her book, The Everyday Advocate: How to Stand Up for Your Child with Autism, Martin discusses being an advocate for children with special needs. The following is an excerpt from her book about what it means to be an advocate:

The Seven Principles  
     Advocacy is not a lofty idea. It is practical work in the trenches. These seven principles can be a guide to what an advocate does--and what an advocate becomes, as a result of applying these principles. 

1.  Take Responsibility  ~ Be a leader 
2.  Learn   ~ Be an expert 
3.  Think Critically  ~ Be discerning 
4.  Speak with Authority   ~ Be pro-active 
5.  Document  ~ Be prepared 
6.  Collaborate  ~ Be a team builder 
7.  Educate  ~ Be a voice for your child  

     ... The concept of advocacy is not about changing who you are. It’s about taking specific actions that will help you achieve well-defined results.  This kind of engagement is the often unacknowledged key to the achievements of so many of the high-performing people I meet in my legal practice every day. In fact, I’m convinced it’s the secret behind each one of us achieving our full potential, not just in our journey to assist our autistic child, but in our careers, our businesses and personal lives.  

     Stephen Covey says that, if a principle is correct, "it is valid and applicable in a wide variety of circumstances.” When you see the effectiveness of the principles of advocacy in helping you stand up for your autistic child, you may be emboldened to apply them in your job, in your intimate relationships and in your business affairs. These principles can empower you in so many aspects of your life. That’s what happened to me.  In my determination to help my son, I discovered principles that profoundly changed my life. I’m willing to bet it will do the same for you. 

     The doctors had several suggestions for how to be an advocate for your health. I have listed a few of there, and my, suggestions below:

• If you are not sure about a diagnosis, or you have been given a serious/life-altering diagnosis, always seek a second opinion.
• If as a mother you feel that there is something wrong with your child, trust your instincts. If the first doctor you see doesn't listen or tells you you are being paranoid ("a first time overly worried mother") see another doctor. And another, if need be, until your concerns are heard and taken seriously.
• Write down questions you want to ask the doctor before, and/or during your appointment and ask your doctor. If there is not time, schedule a time, or extra time, to meet with your doctor to discuss your concerns or ask questions.
• If you are uncomfortable speaking up, bring a friend or a relative with you to the appointment that will speak up on your behalf or encourage you to do so.

     Know your rights, and demand to be heard. It is your health and your family's health that are affected if you don't.

Reading Food Labels

There are many ways to advocate for your health. Some of the most simple ways involve no interaction with anyone other than the person checking you out at the grocery store. I am talking about reading food labels. Being aware of the foods you put in your body goes a long way towards keeping you healthy. And what better way to advocate for your health is there than to find ways to prevent you from having health issues in the first place?

I have to admit that I didn't used to read food labels very often, if at all, prior to a few years ago. I mean if I was going to buy a bag of chips or a box of cookies, I knew how much I wanted to eat and already knew it wasn't good for me. I certainly didn't need to read the label to know exactly how many calories I was consuming. But, as I got older, it became more important for the sake of my weight and health to be aware of exactly what was in the products I was eating. And as I read and read, I became depressed, disgusted and disappointed with the number of products that had high fructose corn syrup and other additives that really didn't need to be in there. I mean seriously if the applesauce a company produces needs to add high fructose corn syrup, there's probably something wrong with the apples they are using (as an example).

So I read and I researched, and learned that there were lots of alternatives to products I loved that were healthier and tasted just as good right next to the products I used to buy. Other than just looking at the ingredients I began looking at serving size and calories and was amazed at what some companies considered a single serving seemingly to make the calories seem lower. Generally, those are the two sections I look at - ingredients, and calories/serving size. Reading food labels doesn't have to be cumbersome as I understand that when you're in a rush who has time for that. But if you don't have time to do it every time you shop, then if you typically buy the same products It just takes one time to take minute to read the label and make a choice. And with all the misleading advertising it really is important to read the label and not just assume because a product says something like "all natural" that it is healthy, as I have made the mistake of doing a few times only to discover "all natural" usually includes tons of added sugar. 

Some of the best sites to help guide you on what to look for when reading food labels are the FDA site here and the Mayo Clinic site here. The more aware you are, the more in control of your health you will be.

Power of Information

I've always been of the opinion that information is power. As a type 1 diabetic for nearly 18 years, it's been very important for me to stay on top my condition. Doing so means understand what diabetes is, how it is caused, what the long and short term effects are of high and low blood sugar. Having that information helped me understand the role diabetes would play in my life, and how to best manage and control it. When I see my endocrinologist I need to be able to tell her what my blood sugars have been running at various points in the day (most of those numbers can be taken from my glucose monitor). But just seeing those numbers downloaded from a machine doesn't help anyone. I need to be able to explain to my doctor why my sugar was in the 200s or even 300s, or what caused my sugar to drop to 35 mg/dl (normal blood sugars should range from 72-140 mg/dl). Keeping notes on what caused those episodes puts perspective on the numbers and allows me to work with my doctor to come up with a better plan for managing my diabetes.

Another time being informed helped was when I was scheduled to have surgery on my thumb. As I was lying there waiting for the surgery to begin I spoke to the anesthesiologist who explained that on top of local anesthesia they would also be giving me medication to make me relax and not remember much of the surgery. Having become familiar with all types of sedatives and other medications when my son was in the hospital I asked him if he meant that they planned on giving me Versed. He said they were. Having done research on the drug (I researched every drug my son was given) and understanding its effects, I told the anesthesiologist that it was not necessary. It was a simple procedure, nothing traumatic I needed to forget, so I preferred to be totally conscious and aware and just have local anesthesia.


Those are specific examples in my life where information has been important, and they may not apply to other people. But, being informed about your health does apply to everyone. And it can be as simple as writing down your symptoms, or questions you have, to ask your doctor, to creating complex spreadsheets to monitor every aspect of your life. Keeping informed is your responsibility to yourself no matter how you chose to do it.

I know my body better than anybody else possibly could, but that isn't simply because it's my body, it's because I've taken the time to research, ask questions and understand the conditions and issues I have; to know what is, and what isn't, normal. When you are in tune with your body, know what is typical for you, and what is not (blood sugars, blood pressures, cholesterol levels, etc), that is power. Not being informed of your (or a loved ones') issues, conditions, or illness, is, in a sense, abdicating control. The point is, that when it comes to your health, you are your most ardent advocate. If you don't understand and stay informed about your body and your issues, who will?

Speaking Up

In almost any situation its difficult to speak up when you know that doing so can make people upset, cause them to dislike you, or think you are being anal retentive (to put it nicely). But, in a hospital setting, in which it is infinitely more important to speak up, it is also much more difficult, as you can risk upsetting people you may see or interact with regularly.

I ran into this problem quite a few times while my son was in the hospital. One issue that came up several times was hygiene and hand washing specifically. Before my son receive his transplant we knew he couldn't get sick or if a heart was found during that time he wouldn't be eligible. So we were extremely cautious about staying away from sick people, washing our hands and using sanitizer, and wearing a mask if we thought there was a remote chance we were coming down with something. As parents, it was the least we could do, but we also expected no less from the medical staff that took care of our son daily. 

Most of the staff did not let us down, they washed their hands or used sanitizer when they entered his room, but a few people did not. They may have washed their hands or sanitized when they entered the unit, but not when they entered Laith's room, and in his situation I was very worried and unwilling to give anyone the benefit of the doubt. That didn't mean it wasn't difficult to speak up, especially when I could tell some of the people I asked to wash their hands were annoyed, but I had to keep reminding myself that it wasn't a popularity contest, it was literally my son's life that was at stake. 

I was always polite. I would generally say something like "I'm sure you washed your hands when you came in, but I'm super anal, would you mind washing your hands again to ease my mind?" I was hoping by saying that they would understand that even if they had washed their hands it would make me feel better if they did it again. There are of course times when a simple "Can you please wash your hands first?" is appropriate, such as when I saw a technician drop his pen a few times and pick it up from the floor and then, without washing his hands, wanted to check on my son. Or when a fellow sneezed into her hand and then wanted to check on Laith without sanitizing first. Absolutely not! At those times, it is apparent that they didn't take the proper precautions and I had to speak up.

I still struggle with speaking up at times, and have to mentally rehearse what I'm going to say in some situations, but after all that we've been through I realize that my family's well being is more important than stepping on a few toes, no matter how intimidating those toes may be.