Navigating Medical Care

mazeNavigating medical care can be an exhausting process as any celiac, IBS, Crohn’s, diabetic, or cardiac patient knows. As this year draws to a close, I’m looking forward to the renewal a new year promises.

I spent the past few days with my mom in a rehab facility. She is a dialysis patient and last week had 3 small strokes. On the phone from the ambulance as she was transported to the hospital, she sounded ok, but said her right arm and hand wouldn’t work right. Five days later, she arrived at a facility where she could receive physical therapy multiple times per day. It was Christmas eve.

Of course holiday staffing varies from the norm. On Christmas day, our nurse was in charge of 60 patients. There are 480 minutes in an 8 hour shift. That means, she could spend 8 minutes per patient even if she didn’t take a single break. We used more than 8 minutes of her time when my mom passed out in the wheelchair from low blood pressure. Needless to say, there is no time for the staff to make sure Mom eats or gets enough fluids.

My mom is lucky because at least one of us has been able to be there for a portion of every day. In spite of that, it has been difficult to get enough information together to assess whether a bad day is just a bad day, or the beginning of a downward trend. It’s hard to know whether we need to quit worrying about the food on the cafeteria tray and just get some Power Yogurt down her. We know she’s not getting enough protein to fend off infection for long. Unfortunately, our experience is not unusual.

I learned long ago when I had a rare parasite that caused recurring pneumonia that when you’re weak and in pain, you must have an advocate with you every step of the way or you can quickly be dismissed and become lost in the system. My lawyer boyfriend was with me when I was trying to get a referral to a large diagnostic clinic. He could barely contain his laughter watching me bite my lip when my pulmonologist said, “If you didn’t have an intelligent boyfriend here with you, I’d say this is all in your head.” And he wasn’t the first physician to say that during my two year ordeal.

I was young, healthy, went to the doctor promptly and still almost died with the first pneumonia after having been diagnosed with a bladder infection. I actually had psittacosis from Chlamydia psittaci which had become encapsulated in a recently capped tooth. This experience made me acutely aware that navigating medical care is best played as a team sport.

During that two years, I read all of my medical charts. This was also an eye opening exercise. The history recorded in the charts often wasn’t even remotely related to the history I gave. I realize my symptom group was unusual. Well, actually it wasn’t for someone with psittacosis, but it was unusual enough for one nurse to determine that I was just a bad historian.

At some point, most of us will need the expertise of the medical system. Without it, we do not have the depth of knowledge, necessary labs, sophisticated testing equipment, or access to medication that may be necessary to get us through a crisis and put us on a path to improving health. Is there anything we can do as patients to make sure we have the best chance of getting optimum results from medical care?

While nothing will guarantee a certain health outcome, here are 5 things you can do to facilitate a more positive journey in the healthcare system:

1. Choose a friend or family member you trust to act as your advocate in any major medical event.
The best advocates care about your well-being, can remain calm in a crisis, are good listeners, can process and prioritize information, are unafraid to ask questions, and will tell you the truth in a kind manner.

Be sure to identify your advocate as someone who has your permission to view healthcare information so that your care providers will not worry about a HIPAA violation.

journal2. Keep a daily journal of your condition.
Try to record facts without interpretation. For example, if you feel your energy level has significantly dropped, record how much sleep you get, when you get it, how many fluids you consume and what kind, what you are eating, how much and when, how much exercise you get, what kind, and when you get it, then note how tired you feel on a scale from 1 – 10.

Doing this every day will help you have a realistic picture of what is happening over time. It will also help identify areas in which a change in routine may help improve your symptoms. If you are too weak to do this, your advocate or caregivers can make notations for you and record their observations as well.

3. Be informed. Ask questions. Make decisions.
You are ultimately in charge of your healthcare. If you do not ask questions, you may be passively agreeing to treatment you would never actively choose. It can be helpful to think of yourself as pilot in command.

In an airplane, the pilot in command (PIC) is the person who makes the final decision about what will happen in an airplane. He can accept or refuse instructions from air traffic control and he is in responsible for all operations of the plane until he actively turns over command to another pilot by saying something like, “your plane or your aircraft”, and hearing “my plane” as a response. He then repeats, “your plane”. This is called a Positive Exchange of Controls.

If air traffic control says, “23 Charlie Tango cleared to land 22 left” it does not mean that the PIC must land the plane. He can request a different runway. If he is not cleared for the requested runway, he can initiate a go-around.

You are the pilot in command of your healthcare. You will receive lots of information from instruments and personnel. The more informed you are, the better the quality of questions you can ask and the better resulting decisions you can make. Your doctor is air traffic control. From his vantage point, he can see traffic and the runway better than you can, but he won’t know that you had a fuel leak and do not have enough glide distance to make the runway without input from you. You have the best odds of a safe landing when you work with your doctor as a team to identify alternative landing areas. Once determined, you decide the destination with which you feel most comfortable. You inform the doctor where you prefer to go from here, then you focus on the procedures that will result in your best chance to safely reach the landing area.

Just as it is common to think that air traffic control actually means the tower is in control, many patients do not recognize that they have the choice to request a plan that fits them. More typically, they defer to whatever initial plan the doctor proposes while they’re in her office and then fail to follow that plan once they get home and it doesn’t fit their lifestyle. This can be detrimental to any long-term progress.

4. Treat everyone kindly beginning with yourself.
When you have a chronic condition rather than a medical emergency, it can slowly eat away at your energy and attitude. A desire for relief may lead to impatience with medical staff. While you may feel justified in taking your frustration out on nurses, techs, or aides, doing so will not encourage them to treat you kindly.

The simplest way to prevent reaching the point at which you lash out is to recruit consistent, adequate social, emotional, psychological, and spiritual support. These needs are very individual, so a high level of self-awareness will be helpful in determining what and how much you need.

Incorporating a regular exercise, meditation, or yoga practice can strengthen your connection to internal resources. You may also find restoration in activities like gardening, cooking, writing, reading, fishing, walking, painting, woodworking, swimming, dancing, volunteering, or playing with your children or grandchildren.

flatbread5. Decrease the need for medical intervention.
You don’t have to worry about navigating the medical system when you’re healthy enough to only require routine check-ups or regular monitoring. In some cases, significant lifestyle changes can minimize the need for medical intervention. The effects of regularly eating a balanced diet of fresh foods, drinking plenty of water, getting adequate sleep and exercise, and filling our lives with passion and laughter should never be underestimated.

The new year is always a great time to wipe the slate clean and do things differently. I hope you’ll find these tips helpful the next time medical care is required.

As we approach the change to 2016, I wish you an abundance of health and hilarity!

Happy New Year!

Travel Tip #14 – Don’t Cry Over Spilled Milk

When you’re traveling, there’s no need to cry over spilled milk…or spilled anything when you have some simple supplies on hand. Even if you’re like my boys who pack by throwing clothes in a bag 30 minutes AFTER they’re supposed to have left the house, you can be prepared for the inevitable travel oops. Less than 5 minutes of assembly before you hit the road to grandma’s house for Christmas can make for a more comfortable trip down the road.
paper towels

Whether you’re flying or traveling by car, start with the basic spill reliever – paper towels. Most of us keep a roll around the kitchen. Beginning at the loose end of the roll, tightly roll a section of towels, then put them in a zip top bag. Without the cardboard core or empty space in the center, a generous number of towels take up very little space. The plastic bag can double as a trash bag if you have a large spill and need a place to contain soggy towels.

Campers, backpackers, and duck hunters have used this technique with toilet paper for years. If you’re traveling in a remote area, you may want to include that essential as well. Throw it in your purse when you make a pit stop and you won’t have to worry whether the facilities are well stocked. It can also come in handy if you get stuck in an unanticipated winter storm and need to make a trek away from the car.

This time of year, travel is often accompanied by a runny nose or lingering cough. Tissues to cover your mouth will make your companions feel better about sharing closed spaces with you. Of course you can purchase these in travel packs if you don’t want to make your own. As a matter of fact, you can purchase toilet paper and paper towels in travel rolls as well. These make good stocking stuffers for the frequent traveler who can throw them into the glove compartment of the car and always be prepared.
If you’re a vigilant planner, there are many individually packaged items you may want to carry in your bag – hand wipes, face wipes, eyelid wipes and a variety of wipes for the other end. Whether I’m traveling or just going to lunch and the grocery store, I like to carry eye drops and tooth cleaning pics along with lens wipes for my glasses.
And if you’re a frequent spiller, you may want to top off your supply list with a stain removal pen. I must look like one of these because a grocery store employee recently handed me a free pen while I was shopping in the produce section. Perhaps I had a coffee stain on my shirt, or perhaps she was just being nice. Either way, I am now fully prepared – are you?

If so, there’s no reason to cry over spilled milk. If not, you can be in about 5 minutes. Happy travel and happy holidays!

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

Holiday Baking – Keep it Safe!

shortbreadI’m getting ready to begin some holiday baking and I want to make sure I keep it safe! Yes, that means I’m going to try not to burn the cookies to a crisp like I did a cheesecake crust at Thanksgiving. And yes, it means I’ll try to keep my paper towels away from the burner flame when I’m melting chocolate. Okay, I’ll try not to drop a knife by my toe either; but even more importantly, I’m going to check for food recalls before I begin.

If you’ve watched the news at all this year, you have probably seen numerous food recalls. I remember seeing one involving natural peanut butter. Since peanut butter cookies are on my baking list, I want to make sure that the natural peanut butter in my pantry is not the one I saw on the news. The fastest way I know to find out is to visit the FDA website
recall list
A quick review of the site this morning assured me that my peanut butter is not on the list. It also reminded me that the most common sort of recall seems to be a failure to include some ingredient or other on a label. Sometimes this sounds serious. Other times it’s a bit comical, like when a company has to recall edamame because they failed to note it contains soy. It IS soy for cryin’ out loud, but maybe it’s good to make sure we know that.

One of the most common reasons for recall in the current FDA list is failing to note that a product contains nuts of some sort – walnuts, peanuts, etc. If you are severely allergic to nuts, it is probably wise to avoid all processed food all the time since the failure to label their inclusion appears to happen with an uncomfortable frequency.

In addition to periodically checking the FDA site, I am a vigilant washer of fruits and vegetables. I know it may seem silly to wash an orange if I’m just going to throw away the peel, but I do it anyway. My mom once had a fungus growing in her lungs that was attributed to orange peel. Whether that was the real culprit or not, it was enough to convince me that taking the time to wash the produce was not too inconvenient. An, of course I’ll make sure my cutting boards and countertops are clean before I start slicing fruit and rolling dough.

Now that I’ve done my homework to keep it safe, it’s time to get in the kitchen and do some baking! I can’t wait to smell warm cookies in the oven.

Have fun preparing your holiday treats & keep it safe in the kitchen!

A list of recent recalls is also available here:

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

Travel Tip #13 – Don’t Forget to Order Dessert!

Vacation is the perfect time for a little indulgence, so don’t forget to order dessert even if you’re gluten-free! It’s easy to assume that the dessert menu will pose too few options or require too many questions to make it worth your while. That’s an assumption that would prevent you from devouring this delicious Pistachio Nougat that combines a semifreddo, pistachio praline & caramel sauce. The praline added crunch to the light semifreddo making it a satisfying bite and the whipped cream on top took the whole experience over the top.
pistachio nougat

I’ve been traveling for the past few days with friends who love to eat some gluten. Without any extra effort, we found numerous sharable desserts that worked for all of us just by asking to hear the dessert choices. Ah, you skeptics are probably thinking, yeah that may be true in a big city, but not where I vacation.

You may be right, but before you dismiss the idea that it pays to ask the question, I should tell you that we ordered the Pistachio Nougat in a town with a population of less than 4000. Of course, I’ll admit that won’t happen in every restaurant or in every small town, but you get the point.

The next night, in a larger town about 10 miles away, we sampled a Blondie served atop a cranberry compote with a side of salted pecan ice cream and sprinkled with candied pecans. Sunday brunch included gluten-free biscotti and donut holes.

When you eat in locally owned restaurants, you’ll often find tasty gluten-free dessert options right on the menu – creme brûlée, gelato, rice pudding, tapioca pudding, ice cream, panna cotta or macarons. Of course, you’ll always want to verify that their particular recipe doesn’t include some unusual problem ingredient.

While having dessert is not essential to any balanced meal plan, it can add enjoyment to the times you’re away from your regular routine. After Sunday brunch, we refused to even consider dessert because we’d indulged enough for one trip, but I have to say, it was great while it lasted!

Next time you find yourself away from home, don’t forget to order dessert!