Posted in after the diagnosis

The Importance of a Great Doctor

I’ve been dealing with some health issues over the past six weeks.  I’ve become quite friendly with my internist as I’ve seen him three times in a month.  Each time he has been respectful, inquisitive, and proactive.  We’ve discussed treatment options and altered the medication I’m taking to resolve the issue.  At this last appointment he suggested it’s time to see the specialist.  I did what all of you should do, I went home and researched the doctor’s credentials.  I checked where he went to medical school, but more importantly, I wanted to see where he did his residency.  The residency is where the doctor get’s their in-depth training, especially for a specialist.  I was very secure in the qualifications of the physician easing my anxiety of having to see the specialist.

I arrived for my appointment to find a nurse who was terrific.  She was caring, polite, and really knew what was going on.  She explained how the appointment would go and when she took my blood pressure she found it to be a bit high.  I explained that I have “white coat syndrome” (where one’s blood pressure goes up just being in the doctor’s office).  In addition, I’ve been dealing with pain for the past six weeks and that has a tendency to raise one’s blood pressure.  She informed me that I should have my pressure checked in the next couple of days as that’s the new protocol from my medical provider, good to know!

The doctor entered the room and jokingly welcomed me to the specialty practice.  He was acknowledging that no one really wants to the see a specialist because it means that the situation has been elevated to the next level of seriousness.  He did an exam and seemed hopeful, a very good sign.  He invited me to his office where he started to show me my ultra-sound and then decided to make a drawing to explain what was happening.  Following his artistic creation he did show me the ultra-sound so I would have a better understanding of my current health status.

He prescribed some medication and emphasized that he was committed to resolving my current health challenge.  He also was kind enough to let me know that it could take some time because sometimes the body or in this case, an infection, can be quite stubborn.  I left the appointment feeling relieved because like so many of you I figured I had something much more serious.  I had already gone down that dark tunnel, only to be lifted back to the light.

Having a doctor who instill confidence is vitally important!  Having a doctor who instills hope is vitally important!  Having a doctor who makes it clear that you’re a team is vitally important!

If you have other things that you think are vitally important please share them with us!

 

 

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

I Was A Better Patient Before I Got Sick

Ever notice that before your diagnosis of a chronic or other life-altering illness you were a much better patient?  It’s possible that’s because you only saw the doctor when you were sick, in need, and you knew it was probably a one-shot deal.  You could exchange pleasantries during the annual physical, but there was no dependency or tension.

What came next took you and probably your doctor by surprise.  The idea that your body was hiding something that is harmful is always a shock, especially to primary care physicians.  They are the first stop on the run-away train.  Primary care physicians are the ones who sit by your side trying to figure out what’s the problem and then when something catches their eye you hear the words, “I’d like to refer you to a specialist”.

Once the doctor, whether it be your primary care physician or the specialist, utters the famous line, “I’m sorry to tell you…” then the doct0r-patient relationship changes.  At the start the doctor-patient relationship may be adversarial, after all who doesn’t want to shoot the messenger.  The hope is that over time it become collegial.  Let’s face it, working as a team will be more productive on your journey to health and healing.

But let’s go back for a moment because being a “good” patient before you got sick was more about hedging the odds, kind of like the insurance industry betting you will get sick and you betting you won’t.  It’s easy to be a “better” patient when your visits are infrequent, there probably aren’t many if any billing issues, and the biggest discussion is about exercising more, maybe losing a couple of pounds, and getting rest.

All of that changes with a diagnosis of a chronic or other life-altering illness.  Our healthcare system has forced too many to have to deal with outrageous medical bills.  (Medical bills are the number one reason people declare bankruptcy)  Billing often causes tension between the office staff and the patient.

Then of course are the issues related to treatment.  As your doctor gets the test results and makes recommendations, the doctor-patient dynamic is changed.  It’s no long simply taking the recommendations and making an appointment for the following year.  The test results and the recommendations now bring you and the doctor into deeper discussions, not only about treatment and the course of the disease, but heart wrenching topics like end-of-life care.

It’s easy to see why you, the patient, may become gun-shy, maybe a bit angry or hostile, and on the other hand you may retreat and be sad.  Understanding that your relationship with your doctors is no longer simply routine, but an ongoing and more intense relationship must be reconciled in your soul.  The two of you are together for the duration.

I hope you’ll take a look at the relationship you have with your medical provider because now is the time to take action if you feel things need to change.  It’s no longer simply about cutting red meat out of your diet, and the ante has been raised.  This is one of those moments when we have to remember, “Life isn’t the way it’s supposed to be; it’s the way it is”.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Should we be striving for Familiarity?

They used to say that we’re all strangers in a strange land.  The question is how long do we act as strangers and shouldn’t we be looking or hoping to become familiar with our surroundings?  It seems to me that when we are familiar with people, surroundings, or situations we’re more at ease and that promotes health and healing.

How does this apply to you following your diagnosis of a chronic or life-threatening illness?  The truth is that you’ll begin to have regularly scheduled appointments in many places.  You’ll go to the doctor, the lab, and possibly another location for treatment.  How well do you know those who work in those locations?

We know that they know you, at least as a number on a file, but wouldn’t it be nice to become familiar with those who know intimate details about your life?  Personally, I try to get to know a couple of people in any doctor’s office, the receptionist, the nurse, and the medical assistant.  Many doctor’s are very busy and although we’d like direct access, your best bet may be familiarity with these other key employees.

I’m not saying you need to know their bank account numbers or blood type, but it doesn’t hurt to ask how their day is going or what they did over the weekend.  If you’re going to be a regular that may develop over time unless you simply check in and go sit in the corner trying to be anonymous.  It does take putting yourself out there a bit, but it’s worth the small investment of your energy.

The truth is that if they know you as more than a chart number, you’ll get calls returned faster, questions answers until you’ve exhausted every possible scenario, and you’ll get tips and secrets that will aid you in health and healing (especially about how to deal with side-effects).

Take it from me; I had to learn the hard way, but once I discovered the secret of familiarity my visits have been a cake walk and much more enjoyable.  It’s almost a social occasion (until I get in the exam room).  Try it out and let me know how it works for you!!!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Anxiety, Angst, and Apprehension

I have a confession to make.  Even with all my years of patient empowerment work I hate when I have to confront a medical/dental professional.  I get the entire conversation written in my head like a bad Broadway play, full of villains, twists and turns, and someone coming out of it worse off than when they started…usually me.

I had some dental work done a couple of weeks ago and 24 hours after the work I noticed that it didn’t feel good.  I had some pain and the right side of my mouth that was never sensitive before was not sensitive to hot and cold.  Of course as timing would have it the office had closed for vacation so I had 10 days to have this mess swirling around n my brain.

My biggest obstacle, and maybe you can understand, was the shift that takes place from everything being okay to being less than perfect.  I felt like the dentist had let me down, not that she didn’t anything wrong professionally ( at least not to my knowledge).  Thee was definitely a sense of dread that I felt as I picked up the phone to call the office the first morning they were open for business.

I asked the receptionist to speak with the doctor.  She asked what was wrong and knowing the work I had done speculated (scary when the receptionist speculates), but I figured if she was going to get me to the doctor she could speculate to her heart’s content.  Fortunately, she got me in yesterday afternoon.

The dental hygenist asked me what the problem was so I told her.  My next words were the most telling.  In a discouraged tone I asked, “Please make it better”.  The dentist came in and told me what she felt the problem might be and proceed to make the necessary adjustments. 

So what about the sensitivity to hot and cold?  The dentist told me that she had some work done and that her teeth became sensitive to hot and cold and it resolved itself over time…it took a year.  Now I’m once again in the dread space but we’ll take it one day at a time.  I must have the same procedure done on the other three quadrants of my mouth.  Better wait or I’ll never be able to eat again.

I know you’ve been waiting for the moral of the story so here it is:  It’s natural to feel apprehensive when needing to confront a medical professional.  We’ve elevated the doctors on extremely high pedestals and all we have to go on is our bodily experience.  Here’s the important point.  Your bodily, emotional, and spiritual experience is all that matters.  If there’s a problem it’s up to the medical professional to fix it.  This gets back into the need for doctors and dentists to do a better job of informing their patients about results of procedures.  If the dentist had told me what might happen at least I wouldn’t have freaked out and had 10 days to stew in my own juices.  The partnership has got to get better.

Posted in Caregiving

As If You Didn’t Have Enough to Worry About

Welcome to Caregiver Friday!!

Just when you think being a decision maker in the role of caregiver/wellness partner a new study lays an extra burden of responsibility on your shoulders.  The findings are in reference to a study done on patients who had been labeled in a permanent vegetative state.  In many cases the family is asked if they want to continue the person on life support or have other extreme measures performed.  That decision can be easier if you know that the person is truly in a permanent vegetative state.  But what if you’re not sure.

The Wall Street Journal (WSJ) reported on the study that was published in the New England Journal of Medicine.  The study examined 23 patients who had been diagnosed as being in a permanent vegetative state.  Four of the patients showed signs of consciousness…can you believe it 4 of 23.

Using MRI scans the patients were asked questions and their brains were monitored.  Certain responses would light-up certain parts of the brain.  The WSJ article stated “Four of the 23 vegetative patients responded to the commands and exhibited brain activity in the same areas as healthy control subjects”.

When trying to make potentially life and death decisions as a caregiver (hopefully you were mindful to have a Durable Power of Attorney for Healthcare) you are now burdened with the quandary, “Is the person I’m caring for really in a permanent vegetative state or is he/she one like in the studies that can still responds to questions?’ 

I believe the medical ethicists are all gathering to take up this matter on a big-picture discussion.  How would you handle this situation as a caregiver?  If the decision is your, how will you know whether the person you’re caring for has some level of consciousness?  

Dr. Allan H. Ropper said, “the line between consciousness and unconsciousness will be blurred” as scientific understanding of the vegetative state depends.  This is not the most comforting statement for those of you caring for someone who is facing end of life issues or has been in an accident, but for now it’s the reality.

Who do you have that you can discuss these issues with such as a medical ethicist or spiritual director?  Did you have thorough conversations with the person you’re caring for about end-of-life issues?  There are those who even though they may have brain activity, on whatever level, wouldn’t want to live the rest of the days unable to speak, move, or communicate.  Even if the brain might register some activity is this a life?  You know this will wind up in the courts at some point, but for now the onus of responsibility is on you.

I know there is more to come; this is truly the tip of the iceberg.  Please have conversations with your loved ones about end-of-life care.  Decision-making for caregivers is tough enough without the burden of deciding one’s level of consciousness.

Posted in Caregiving

Because Smart People Told Me

Welcome to Caregiver Friday!!

You have a lot on your plate so why even bother trying to reinvent the wheel.  As I’ve mentioned, caregiving takes a lot of knowledge, wisdom, and compassion.  It requires great time management and the ability to put others ahead of yourself (sometimes to a fault).  We know that everything you do, everything you try, and everything you encourage the patient to consider is done because of your unending commitment to their health and healing.  That being the case, how willing are you to take advice from others?

Sometimes when you’re given advice and what you really hear is that you’re doing it wrong.  The reality of the situation is, whether you want to believe it or not, there are people who know more than you do.  There are people, even if they haven’t been caregivers themselves, know more about the struggles caregivers face than you.  How is that possible?  It’s the accumulation of experience that gives these “experts” wisdom and a pool of knowledge and information they are willing to share with you.

You may still be skeptical, but let me share my own experience.  I personally have not been a 24/7 caregiver to someone with a chronic or life-threatening illness, although I have been a patient for over 35 years.  Professionally I have been working with patients and their caregivers for 23 years.  In that time I’ve heard, witnessed, and supported thousands of caregivers.  If you take even 1000 caregivers and multiply that by the number of stories they’ve told and the concerns they’ve shared, that’s a lot of information to draw from over the years.  It’s that well of experience that has provided me with lots of information and solutions to share with the caregivers I’m currently supporting. 

It’s a little like the computer in the show Batman.  You put in all the information, push a button, and out comes the answer.  When you have that amount information to pull from the possibilities for resolution are endless.  So what’s the moral of the story?  Take the information providers have to offer and allow yourself to put these solutions into action.  Why?  Because Smart People Told You!  Allow people to give you the support you need without it being a commentary on your ability.  People like me have devoted our lives to making the lives of those facing illness, both patients and caregivers, easier and less stressful.  We want to support you, the caregiver/wellness partner, on your own journey to health and healing.

Posted in Emotional Health

Anchors Away

I’ve only been on small sail boats a couple of times when I was a kid.  As an adult my boat experiences have been on cruise ships, a very different experience.  The thing both types of boats have in common is the anchor.  The anchor keeps the boat stationary, keeps it from drifting with the current, and allows the boat to create a temporary resting place.

When facing a chronic or life-threatening illness an anchor can be viewed in two ways.  First it can be the stabilizing factor that keeps you in place long enough to face the issues at hand.  It prevents you from drifting away from the core issues facing you regarding treatment or symptoms related to your health challenge.  On the other hand, the anchor can be the thing that prevents you from exploring new opportunities.  It’s the piece of the puzzle that keeps you tethered to old ways of thinking.

If you haven’t created a new mind-set following your diagnosis being tethered to the past can be detrimental to your emotional and spiritual stabilizers that guide you on your journey to wellness.  Keeping yourself attached to the fantasy of a life without the current challenge is just that a fantasy.  Being anchored to an illusion is a house of cards waiting to fall. 

Let’s take a look at it from another perspective.  If you’ve made the internal adjustments following your diagnosis then the anchor may be what you need to stay in one place long enough for the benefits of treatment or new information to take hold.  We all need time to assimilate information into our being and the anchor can be that force that keeps you in one place long enough for your to see the results, hopefully the results you desire.

Where am I getting with all of this?  A lot of how we deal with a diagnosis is based on our frame of reference.  The impact is based on the perspective we take about the health challenge and whether or not we feel empowered or helpless.  My hope is that you find ways to shift your perspective to that which is empowering.  An empowered patient is a better partner with the medical team who is working to minimize symptoms and disease progression.  Your frame of reference will also serve as the lens through which all your experience passes.  Developing the capacity to shift your perspective is a step toward optimism and hope; both necessary ingredients for health and healing.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Published Outcomes

What if the success of your doctor’s practice was published on a website for the world to see?  Do you think it would change how your doctor provides care?  A group in Minnesota has done just that; taken the information about standards and goals and compared them with other health providers in the state.  MN Community Measurement began publishing healthcare results back in 2004.  It’s an interesting premise because you want the motivation to be providing the best care, when in fact it may be the competition between medical practices.

How would your medical decisions change if your provider was given a report card?  The reports are for illnesses like diabetes where there are clear guidelines and it’s easily monitored.  Diabetes is certainly a leading concern in healthcare because the ramifications if not kept under control can be devastating.  So what does this tracking system provide for us as patients?  It provides us with outcome results that we can bring to our provider to further our conversations about our care.  In Minnesota, tracking the diabetes patients is done using five measures.  If you knew the five measures you could bring it to your own doctor and have the discussion.  Sometimes you have to simply take matters into your own hands instead of waiting for a watchdog group to make standards of care universal.

As time goes by other illnesses and conditions will be added to the mix.  The article about this monitoring process had some interesting quotes such as, “Physicians are very competitive people,” says Linda Walling, medical director for clinical informatics at HealthEast clinics…”  I guess I should be thankful that physicians are competitive and want to rank higher or their care would be less than ideal…is that what she’s saying?  Another quote by Judith Hibbard, a senior researcher at the University of Oregon states, “…Her research has found that public reporting motivates health-care providers to work harder on improving care, largely because of concern about their reputation.”  Did I read that right?  They’re more concerned about their reputation than providing optimum care in the first place?  I’m confused.

How do you think this type of reporting will improve your level of care?  What would you like to score your doctor on?  Would you use the information provided on a website like the one in Minnesota and if so how would you use it?  Let’s start the dialogue because it could truly be a matter of life and death!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Full Disclosure

We’re all looking for ways to be healthier whether it be exercise, our diets or the supplements we take.  The problem, especially those facing a chronic or life-threatening illness is that supplements overall are not regulated by the FDA (Food and Drug Administration).  Like many over-the-counter medications it’s not always the active ingredients, but the inactive ingredients that make the difference.

If you go to the supermarket and pick up a brand name over-the-counter remedy, and then pick up the store brand of the same medication, look at the package and read the labels.  The active ingredients, the part that makes the medication work are the same, the inactive ingredients, the fillers may be very different so one thing to consider is that if you start on a generic stay with the generic and vise versa.

Supplements are helpful for many, but it’s important to get the advice of someone knowledgeable about the supplements.  Here’s the issue, most people don’t tell their doctors about the supplements they’re taking.  They feel that supplements are just a vitamin, etc. and can’t do any harm.  It’s not the supplement per se we’re concerned with, but the drug interactions with the other medications you taking that can be lethal.  Many are embarrassed to tell their doctors about their supplement intake for fear that the physician will get angry.  My experience with doctors is that they don’t get mad; they get concerned when we, the patient, tries to play doctor.

When I meet with clients in person, or when I begin my intake with clients I have them take a complete inventory of their medicine cabinet of both prescribed and unprescribed medications.  I encourage them to either bring them to the doctor on their visit, or schedule a consult with a pharmacist who can tell you the pharmacological interactions that can occur.  This is about avoiding disaster, not getting in the way of you trying to heal your body with alternative remedies.

Don’t take chances…full disclosure could save your life and that’s worth talking about!