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!

Pharmaceuticals Are Drugs. Over-the-Counter Medicines are Drugs. Supplements Are Drugs. Period.

pretty pillsPharmaceuticals are drugs. Over-the-counter medicines are drugs. Supplements are drugs. Period. But sometimes we don’t really act that way.
We take supplements along with prescription drugs without ever checking to see if there can be a bad interaction between the two. We don’t research the company that manufactures our supplements to see if they’re reputable even though we know the supplements are not regulated by the FDA. We pop Tylenol after a late night of drinking with no consideration of the consequences to our liver. We tell our children not to use marijuana, heroin, meth, ecstasy, or bath salts, but encourage them to take Adderall, Dexedrine, Xanax, Prozac, Paxil, Lexapro, Luvox, Celexa, Zoloft, Lorcet, Lortab, Norco, Dilaudid, OxyContin, Oxyfast, and Percocet without always exploring non-drug treatment options.

It’s like we have collectively lost our healthy respect for the power of these substances and their possible detrimental side effects or perhaps it’s overshadowed by our collective expectation of a quick resolution to all of our immediate problems. Whatever this attitude shift is, it’s affecting our health and our society. The CDC reports that since 1999, the amount of pain reported by Americans has stayed about the same, but the amount of prescription pain relievers prescribed and sold has more than quadrupled (1).

I have noticed a change in the way my doctors and dentists approach treatment and the use of medication. When I had all of my wisdom teeth out a few years ago and was visibly bruised down to the base of my neck, I was prescribed two days worth of codeine. More recently, I was prescribed a week’s worth of hydrocodone following the removal of a single root from one tooth in a 15 minute procedure. I filled the prescription on the way home assuming I’d be in severe pain when the deadening wore off. Interestingly, my pain was hardly noticeable and only required one day’s worth of Extra Strength Tylenol. My family physician now uses a medicate-and-see mode for diagnosis rather than the remove-all-medications-and-see-what-happens approach to diagnosis that I experienced at the Ochsner Clinic in 1989 when I had psittacosis.

I have a friend who calls her doctor for Vicodin whenever her life gets stressful, another who calls her gynecologist for Valium when she needs to take the edge off, and several who swear by their longstanding prescriptions for Xanax. All of them are well supplied and none of them are in therapy. None of them think this odd.
This sort of matter-of-fact incorporation of highly addictive substances into our everyday lives without examination is leading to alarming trends. According to the CDC, 44 people per day die in the US from prescription drug overdose(2), and some users turn to heroin as a less expensive alternative. The number of chronic heroin users in the US in 2014 was reported by Forbes as being estimated at approximately 1.5 million.

While many of us have no experience with addiction, we all know that pharmaceuticals have side effects. Many times it takes years on the market and numerous injuries before a drug is deemed unsafe or prescriptions for it are limited. Perhaps it’s best not to treat drugs casually at all.

I’m not saying we should avoid doctors, their advice, or all medications or supplements. It just seems that now is a good time to get curious about everything we choose to ingest. It’s easier than ever to access information, so why not learn as much as we can about medication, supplements, and food so that we can make informed choices?

Where should the research begin? You can start with anything. Pharmaceuticals are drugs. Over-the-counter medicines are drugs. Supplements are drugs. All of these substances deserve research. Responsibility for our health and the quality of our lives falls appropriately on our shoulders.

When we fail to get informed, we relinquish some of the power we have over our own destiny. Hopefully, when we make that choice it is deliberate rather than by default. Otherwise, we will feel diminished by the process rather than empowered by our choice. My wish is for all of us to choose well and feel powerful.

pouch pills


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.”