We’re told that cells have memory. After being diagnosed with a chronic or life-threatening illness one of the jobs of you and of your treatment is to entice the cells to recall that place of wellness. I know there is a lot of doubt about whether cells have wellness memory, but for now let’s work off that premise. Allow us to launch ourselves from a place that is filled with hope and potential. The idea of memory serves us not only on the cellular level, but the emotional and spiritual level as well.
When we consider the notion that wellness is a muscle then we have to wonder what we’ve done up to the point of diagnosis to work that muscle. How many times did you take your wellness to the gym, not the one with workout machines, but one filled with good food, plenty of rest, and little stress. How proficient were you at listening to the body and really getting the message instead of waiting for an ache or pain before you open your ears and your heart to the message? Is it possible that as a culture we’ve allowed our wellness muscles to atrophy?
If that’s the case then we should all be scared. The question is “will the wellness muscle respond to rehab?” Is it possible for us after we’ve been jolted out of health complacency to rebuilt our wellness muscle? Following your diagnosis, what are you willing to do to start a wellness muscle workout? What does that workout look like, for you? How committed are you to rehabilitating your wellness muscle? There’s no wellness muscle gym or rehab facility so you’re going to have to get creative in how you design and execute the wellness muscle rehab. Remember, you’re trying to reverse the atrophy that has occurred in the muscle so the plan must be real and you must be diligent.
Unfortunately, most people who haven’t been diagnosed with a health challenge haven’t faced the wellness muscle atrophy, so this places you ahead of the curve. Activating your wellness muscle not only will help with your current health challenge, but it also will give you more energy for life, increase your social and familial relationships, and give you insights to the possible.
Tuesday evening I had the honor and pleasure of speaking to the local psoriasis support group. The topic was “How to be the CEO of your Healthcare Team”. It was a great evening. The group was welcoming and the mix of attendees was diverse. The group not only had those who have psoriasis but a Physician’s Assistant (PA), Sarah Kurts, who not only specializes in treating patients with psoriasis, but volunteers her time to co-facilitate the support group, and representatives from the pharmaceutical companies that serve the psoriasis community.
The magic came at the end of the evening when a few of us hung out to continue the discussion about healthcare, insurance companies, treatment protocols and ideas about the underlying factors that contribute to psoriasis. While we were standing there we got to throw out a bunch of ideas that would be great for scientists to study. That is the most important point, those of us who have an illness know the illness from not only the personal, emotional and spiritual aspects of having an illness, but the physical aspects of the disease. We know what sparks a flare. We know what causes trauma to the skin. We know, from lots of trial and error, how the environment impacts our health. This is incredibly valuable information that scientists need to know.
This type of impromptu think tank is what motivates people to become the CEO of their own healthcare. It’s the inner force that says to the world, “I have something to say and you need to hear it”. It’s incredibly empowering to have these insights and often is the driving force for those of us facing a chronic or life-threatening illness to voice our opinions to our health providers and those who represent us in the nonprofit arena. Every piece of information we can add to the mix increases the chances of coming up with a winning strategy to overcome illness.
Having these types of discussions is why support groups are so important. Support groups are the incubation arenas for new thoughts and ideas. They are the springboard for action. Groups or organizations that provide education and support are a gift that I feel not enough patients take advantage of as they deal with their illness. Knowledge is power and having people like the pharma reps at the meeting added another dimension to the discussion because they have the ear of the researchers. This is where the domino theory comes takes hold, you get a group of people together who begin a discussion and the first domino gets knocked down creating a chain reaction. I’ve talked to at least three people about some of the ideas we discussed in our mini think tank. I’ll take these ideas to my next meeting with my doctor and hopefully that knocks down another domino.
What will you do to create an environment that instigates new ideas and a call to action?
It’s amazing how we gauge our health by the numbers instead of how we feel. In the show “RENT”, a young man in a support group whose numbers are poor is asked, “how do you feel?” His response, “Best I’ve felt all year”. We are so focused on the numbers that we often disregard the messages our body is sending us. How can we learn to listen better?
Yesterday I went for lab work. The side effect of the medication I take for my auto-immune disease is elevated cholesterol. Left unchecked, the elevated cholesterol could wreak havoc on my body. I just got the results back, lo and behold my cholesterol dropped by 40 points. Needless to say I’m jubilant about the results. The big question is do I feel any better? Another question is now that my cholesterol has dropped drastically does it give me an excuse not to engage in other beneficial health activities?
It’s scary to think that a test tube of blood and a piece of paper can alter the course of our lives. I wonder how much we fall prey to the placebo effect? If I told you your numbers were better than they are would you feel better instantaneously? Would the thought of greater health encourage you to continue health promoting behaviors? I guess that depends on how much stock you put in the numbers.
At this point in time my numbers are good, but I choose (notice the word “choose”) to move forward with my plans for health improving plans. Tomorrow is the start of the walking season according to health experts so that would further my cause for keeping my numbers in the range I desire. Maybe I will skip that ice cream since the fat isn’t good for my health. I do realize that I’m a stress eater so keeping healthier food around is probably my best bet.
I think of the lab results like standardized tests; if your scores aren’t good does it mean your less smart? In the medical world the numbers don’t always tell the whole story. There are tests results that indicate the importance of looking deeper into the situation. It doesn’t mean you’re sicker, but it could be a red flag for investigation. It’s important to use multiple forms of information in making decisions about your health. Have this discussion with your doctor and figure out how much you need to know, especially if you’re world view shifts with the numbers!
Unlike yesterday, today is bright, sunny but still a bit cool. No I’m not going to give you a daily weather report, but it is relevant to what I want to share with you today. Aside from having an auto-immune disease for over thirty years, I developed asthma as an adult. It’s one of those things I don’t think about until I begin wheezing and need to grab my inhaler to regain my breath. I have what’s called “exercise induced asthma” which I find amusing since I don’t exercise. The reality is that my breathing troubles are triggered when I begin some type of strenuous activity (yes I understand that strenuous is individually defined).
As I mentioned yesterday it was snowing here in Denver in the morning. I was leaving the house and decided to give the driveway a quick shovel. It only took about ten minutes, but as the time went on my chest got tighter. By the time I finished I was short of breath and I went in the house to get my inhaler. I sat at the top of the stairs, sat down and took a puff. By the time I get my inhaler in these instances my anxiety level is pretty high. I often believe that my anxiety about not breathing is worse than not breathing (I guess that’s up for debate).
Once I regained my composure I had to make a conscious decision about how I would spend my day. I could hang on to the anxiety or I can let it go. As with many who have a chronic illness, anxiety is huge. The idea that in one moment you can be fine and like the weather in twenty minutes things can change keeps you on the edge of your psychic seat. There is an anticipatory angst about how will the symptoms show up to day, if at all, and how will you respond? It’s easy to sit in the anxiety and become paralyzed from participating in your own life. So what’s the plan?
I’ll share with you my thoughts and then I hope you’ll share with me some of yours. I’ve come to understand my body and its triggers. I know the cycle of my anticipatory angst and can talk myself down from the ledge. I obviously need constant reminders that my lungs don’t function like others and I probably need some more work accepting and taking precautions in this arena. It is something I am committed to working on because the moments of gasping for air are far from fun and certainly don’t make for the start of a great day. I have to surrender to the idea that I have certain limitations. Yesterday it was about taking precautions before shoveling the driveway. As I approach the warm weather I need to keep in mind that the same thing happens when I mow the lawn. Being able to generalize my triggers is a big step. I hope you’re looking at not only the specifics of your triggers, but how they generalize to other activities or situations.
This is the time when you have to begin a love affair with your physical body. You have to court your body as if you’re beginning a dating ritual. You need to inquire about likes and dislikes. You may be saying, “Greg, I know my body and I know the triggers”. I would beg to differ because if you did would you really intentionally provoke your body? We do provoke our bodies and I know that to live a higher quality of life I need to befriend my body, not challenge it.
How will you spend your day? Will you stay stuck in the anxiety of the symptoms and limitations? How can you transform the current episode into a fact finding mission so you can make better decisions next time around? What would your day be like if you didn’t feel stuck or trapped?
Mirror, Mirror on the wall…who’s the fairest of them all? Remember that from Snow White? It’s funny (in an odd way, not a ha-ha way) that before being diagnosed with a health challenge I’d wager that virtually no one stands in front of the mirror and asks, “Mirror, Mirror on the wall…who’s the healthiest of them all? When we have our health we assume that it’s because we’re supposed to be healthy. The moment the doctor shatters that illusion the mirror cracks and we find that there is another person in the kingdom who is the healthiest.
There is no face of illness. Many who have a health challenge walk in this world anonymously. Of course there are those who have visible symptoms resulting in use of devices to assist in walking or breathing; loss of hair; tremors in limbs, etc. When the body presents the symptoms to the world it’s like outing the individual, making them the face of illness. Unfortunately, the rest of the world isn’t familiar with illness and backs away or gawks at the person and interestingly the public begins to create their own stories in their head. They create stories about how the person got sick, what the body is doing to the person or casting their own prognosis based on the physical symptoms.
Interestingly most “big” illnesses (those we speak about frequently), like cancer, parkinsons, multiple sclerosis, etc. have spokes persons. They become the face of that particular illness. It’s always the person who has survived or is living well because their face becomes synonymous with hope. I want to people to realize that the face of illness is not simply the celebrities, but the postal clerk, the judge in town, the car salesman and every other walk of life. There is no typical health challenged person.
The face of illness is yours, the individual who is facing a health challenge. You are the vehicle that spreads hope about health and healing. It’s your story that will have staying power because those in your life are emotionally connected to you. The celebrity is a story you tell at dinner, but your story is the one that comes up in frequent conversations because those in your circle have access to someone who can answer their questions about the illness. I know it’s not what you wanted, but you are the expert about your particular health challenge.
We would like to think that certain people whether it be ethnic, socio-economic, or other subset of the population are face of illness. Unfortunately that is the case with certain hereditary illnesses like Sickle Cell Anemia impacting the African American Community or Tay Sachs, impacting the Eastern European Jewish community. But the illnesses we hear the most about are equal opportunists.
How do you feel being the face of illness? What has your health challenge given you permission to talk about that you may have been hesitant to discuss before?
They came out in droves! I was shocked to see how many people were fleeting to the entrance of the convention center. If I didn’t know what was happening I’d have thought a rock concert may have been about to begin. The truth is that the enormous number of people entering the convention center were there for a very specific and important issue…Diabetes. The American Diabetes Association (ADA) is hosting Expo’s across the country providing information and resources to the ever increasing number of people diagnosed with Diabetes. It’s epidemic proportions and as a culture we certainly need to address the factors that provide the gateway for Diabetes to creep in.
I’m thankful for organizations such as the ADA for providing tremendous access to resources that can help each person with Diabetes lead a better and more healthful life. I’m amazed that so many people were coming out to seek out information and resources to improve their lives. I guess the first question I have is “how much do the people at the Expo understand about their disease process?” and “what are their personal internal resources to utilize the information provided?”
The Expo model for educating anyone with a chronic or life-threatening illness is a questionable attempt at educating the public. I walked around the Expo hall and was amazed at the following observations:
1. The number of people attending talks was minimal. Of course some of that could have been that the speakers were speaking under less than optimal circumstances. They were on stages in the corners of the expo center, using microphones, but competing against the loud voices throughout the hall. It was so distracting that the speakers could barely hear the questions from the audience. The “educational” component of the expo was counter-productive for most of the attendees.
2. There were so many booths by manufacturers of glucose meters that it felt like one infomercial after the other. My concern is that like the ads in the magazines, the companies who make the meters are trying a bottom up model of sales. They are hoping to get the patient to go to the doctor and prescribe their meter for monitoring their glucose levels. Here’s the problem…by the end of the day if the attendee walked through the expo hall they would have obtained information on at least 8 different glucose meters. What are they going to do with that information? How will they discriminate between what’s a good meter and what’s a good meter for them? Will this encourage Expo participants to ask their doctors? That’s my hope, but my experience is that the patient gets overwhelmed and disheartened about their disease because it’s too much information.
3. A high percentage of those attending were good Expo attendees; they got bags of information, traveled from table to table picking up samples of products and feeling like they hit the jackpot. If we went to the majority of the attendees homes we’d find that the information stays in the bag until it’s ready to throw it out. The attendees are overwhelmed by the amount of information and furthermore they aren’t prepared to sift through the mounds of information in a mindful manner that will serve to better their health and their lives. Of course there are some exceptions but they are in the minority. It was about the free bag of brown rice or energy drink that got people’s attention.
I’m all for education and public awareness, but let’s do it in a way that truly encourages patient participation. It’s crucial for the patients and providers to meet in an environment that isn’t like playing “supermarket sweep” and provide them with opportunities to ask unhurried questions.
I will say this, the ADA did have certified diabetes educators where patients could ask questions one-on-one. That’s a good start, but not beneficial for the masses. My hope is that organizations providing this type of information consider making a more meaningful impact even if it means reaching fewer people. If we set the standards higher for how we obtain information I believe we can create role models and goal models for living healthier lives.
Most of us went to school for a minimum of twelve years. Of course, there are some of us whose mothers promised us that if they won the lottery we could go to school for the rest of our lives (that’s a true confession). The truth is that education is good. I’m not merely talking about sitting in a classroom listening to someone from the ivory tower espouse theories that sound good on paper but have no social relevance. I’m not talking about taking tests, reading long lists of books…I’m talking about real life education. The kind of education that comes from walking in this world every single day.
Whenever you’re getting an education the first thing to consider is, “what do you need to learn”? For those facing a chronic or life-threatening illness learning how to be an empowered patient should be at the top of your list. So let’s say you can major in patient empowerment and minor in health advocacy (self-advocacy). These are two big arenas so your next consideration is “how do you learn how to do this”? My hope is that your first answer is by reading the posts on this blog. Of course there are other options like books, magazines, interviews and oh yeah…real life.
It’s important that you ask yourself, “who will be my teachers”? You need to ask that question so when you come across someone that holds those qualities you hold on for dear life (literally and figuratively) and soak up as many lessons as possible. We may be talking about teachers, but some may consider these people your heroes. Some may consider these people to be spiritual directors providing divine intervention. What they are doesn’t matter. What you call them doesn’t matter. What matters is the information they share and you absorb. What matters are the lessons you learn from being in their presence and watch them in real life. What matters is that you’re open to learning about a subject you wish you’d never had to understand let alone acknowledge.
Education is changing. You’re changing! What have you learned and who have you learned it from? Share who your greatest teachers have been and why you chose them, or why they chose you to be their student!
I attended a motivational talk on achieving great things in life. The presenter cited a study done by Johns Hopkins University that reported that following heart surgery, 90% of patients returned to their unhealthy life habits. Could this really be the case? I would expect some would revert to their old ways, but an overwhelming majority? This not only frightens me but confuses me.
It’s bad enough receiving an illness diagnosis and going through treatment. Having the tools to prevent further problems you would think would be a gift and not a burden. Are we so entrenched in our negative behaviors that we can’t change even if it’s going to save our lives? Could it be that once we dodge a bullet we resurface with a new sense of invincibility?
What is our responsibility to reclaiming our health? If we’re not going to change behaviors to promote health why go through the treatment in the first place? We’re an addictive society so maybe we’re talking about facing our addictions to food, stress and overwhelm.
This is what I’m thinking. I believe we’re given instructions on how to change our lives but we’re so overwhelmed by the diagnosis and the treatment that reverting back to old habits is comforting. As they say, “the devil we know is better than the devil we don’t know”. Most of us aren’t prepared for what in the beginning seems like a huge learning curve and that stress makes us abandon the plan. We want to believe we can do it alone but at the first moment of uncertainty we abandon the plan. So what’s the solution?
You need to find someone or a group of someones who will support you in your lifestyle changes. We’re more likely when starting something new to be more accountable to others than to ourselves. It’s important that whatever changes you want to initiate, that you make public to friends and family. We are more inclined to keep our promises when they are public then when held privately in our heads. Since healthcare professionals are so overwhelmed with managed care and increased patient loads, until there is a problem the doctor will most likely not be the support person. Go see a therapist, hire a coach, go to support groups. If you want to improve your physical health hire a personal trainer, begin taking yoga classes and study with one teacher for continuity and familiarity. If you want to change your eating habits visit a Registered Dietitian (RD), take a cooking class that emphasizes healthy cooking. When change includes fun we are more likely to stick with the plan.
No matter what choice you make you should be your best friend and ally, not your worst enemy. Don’t be a statistic. If you’ve been given years to life, now is the time to add life to years. How do you maintain your lifestyle changes that help to promote health on your journey to wellness?