Every news cycle over the past few days has been consumed with stories about the Swine Flu (I realize that the CDC is calling it something different so pigs aren’t insulted). The World Health Organization is involved along with the CDC (Centers for Disease Control) and it helped facilitate the immediate confirmation of the new Secretary of Health and Human Services, Secretary Kathleen Sebelius. It truly is a global issue that not only impacts health but economics around the world and in particular Mexico.
Viruses are around us all the time. The hope is that our immune systems can keep them at bay, but when they can’t all hell breaks loose. I’m particularly sensitive to these issues because I have a dog, yes a dog, who has been diagnosed with MRSA and Pseudomonas, not to mention staph infections. These infections are prevalent in our healthcare settings and they don’t make news regularly…why do you think that is? People die from these infections, but they aren’t casually transmitted and the big issue is they don’t impact the global economic situation like the Swine Flu. The tentacles of the Swine Flu reach far and go deep…is that the only time when we put our attention into fighting illness? I think I’m having one of those cynical touchstone moments that I discussed in a previous post.
One of the things talked about repeatedly on the news is how to protect yourself from getting infected. Yesterday NPR had a story that gave us listeners a lesson on how to wash our hands. They wanted everyone to know how long you should wash your hands for (20 seconds) and what song you can sing to get to the 20 second marker. Are we so naive about our health? Do we have such issues of entitlement that we believe we don’t ever have to take any precautions? Isn’t that the thought around HIV… I can’t get it so I don’t have to worry about safe sex?
We have to begin taking better care of our health on a regular basis, not just when we increase the alert level. We have to know what our risk factors are and how we can take better care of our bodies so we won’t have to confront the illnesses lurking in the shadows waiting for us to let down our guard. What will you do to take better care of yourself?
Can it really be that simple that simply by wanting to survive a chronic or life-threatening illness it shall be done? Obviously there are many factors that contribute to your ability to survive, but we usually make reference only to physical survival; what about emotional or spiritual survival? Isn’t the mind, body and spirit triumvirate deserving of equal time and equal attention? Haven’t you found that emotional health has a direct impact on your physical being?
When discussing “how secure are you in your ability to survive”, we’re really focusing on your level of resilience. It’s you’re ability to get up and fight following the initial blow; the diagnosis. I know the diagnosis is like getting the wind knocked out of you, but taking a moment to regain your ability to breathe you can begin to make plans for the future. Having the capacity to get up makes me think of the old Chinese proverb, “Fall down seven times, get up eight”. Can you think of a proverb more fitting following the diagnosis of a chronic or life-threatening illness? It’s the cornerstone of tackling your health challenge.
Survival not only references longevity, but it’s the ability to have the strength to take the next step. It’s the fortitude and determination to begin the pilgrimage to health and healing. There’s no greater point of embarkation than understanding that the journey may be long, but it’s your level of security in your ability to survive that will determine how you will complete the marathon. These moments are incredibly impactful upon your emotional and spiritual health. Understanding that the term “survivor” is not simply about the physical body still pumping blood, although that is clearly one definition, but the inner strength to move along on your journey to wellness. Can you think of anything more potent or powerful than backing up your beliefs with words, actions and prayers?
You’ll need to get grounded and take a personal inventory of your physical, emotional, and spiritual strengths. Once you have that personal inventory you have to know what you’re willing to invest to achieve health and healing. You will be required to demonstrate that you’re understanding can be translated into decisions and actions. Don’t sell yourself short!
Ever feel like you have multiple personalities? You have to be the strong fighter when facing your family and friends. When you go to your doctor your become confused and anxious. There’s a host of other scenarios and in each one you take on a persona either to make yourself feel better or make someone else feel better. Do you really enjoy living like Sybil? Living as a medical multiple personality is confusing and exhausting. Do you even recognize yourself?
When you’re facing a chronic or life-threatening illness your identity once defined, by many, by their job, their parenting status, or their religious affiliation are now identified by all those plus your illness. How do you balance all these sides of yourself? Is it possible to be your true self in all or any of these arenas? The big question you need to spend time contemplating is “When are you most yourself?” This is the you that when you peel back all the layers the true you shines bright. It’s the times in your life where there is a clarity of body, mind and spirit allowing for peace of mind.
Being your true self is effortless. It’s the place in your soul where you can relax and enjoy the ease of living. When you’re most yourself you have the opportunity to release what doesn’t serve you and that’s your decision, no one elses. Having the capacity to be your true self puts others at ease because they aren’t responding to a made-up character. They are responding to the most pure essence of your being. They in turn are able to be themselves and that allows for the best of all relationships.
I encourage you to be not only the best you, but the most you. Find that person within and life gets easier. Experience that part of your being and boost your immune system and in turn your health and peace of mind.
Welcome to Caregiver Friday!!!
Firefighters are amazing people. They rush in to save people in the scariest of situations ensuring to the best of their ability your personal safety. The same is true for caregivers; you rush in to help at a moments notice without considering the long-term impact of your actions. You are the model of living in the here and now. You’re commitment and generosity befits the heroism given to firefighters.
One of the things I’ve noticed over the years is that you, the caregiver, often rush into emotional and spiritual burning buildings without considering your own safety. Firefighters prepare for these precarious situations by doing drills week in and week out. Caregivers aren’t sent to bootcamp to figure out how best to deal with emergencies; changes in the health of the person you’re caring for, or what to do once you get into the proverbial burning building.
Just like life there is no caregiver handbook that can guide you through the process; it’s truly an on-the-job training experience. It’s possible to get tips from others, but the thing that makes each situation different is that we’re dealing with people. As a wellness partner to someone with a chronic or life-threatening illness a handbook would only be beneficial if there were a page devoted to every person in the world facing a health challenge. It’s our human nature that throws kinks into caregiving equation. It’s about taking the information available and assimilating it to your particular caregiving challenge.
My hope is that you consider your own health and safety when you rush into the burning building. If you don’t set up a safety net who will be there for you if you fumble or fall? You can potentially create a domino effect of falling and that wouldn’t be good for anyone. I implore you to develop contingency plans because life is full of unexpected surprises. How will you deal with these surprises? Figure out how you will keep yourself safe and healthy as you move forth in your charge as caregiver/wellness partner.
Even though there aren’t any handbooks, the Courageous Caregiver, is a five-part series dedicated to caregivers at www.survivingstrong.com. The “Courageous Caregiver” is free and will give you the necessary resources to make caregiving easier.
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?
You were born with more than a body, you were born with a soul. The soul has a mission and that mission is the guiding light by which you live your life. I’ve met thousands of people over the past twenty years whose message has changed once they were diagnosed with a chronic or life-threatening illness. It changed not because what they talked about necessarily changed, but how they talk about it has changed. There is more meat behind everything they say. The platform gets clearer and more easily understood by each and every person you meet.
It’s been said that the most memorable messages are those that come out of “making your mess your message”. Your health challenge is certainly a mess, but the message that emerges, maybe even erupts is like a having a new North Star. There is a definite guiding principle for our life that you may not have had before the diagnosis. This isn’t about debating if the diagnosis was a gift or not, but what happens when you become more authentic in your message.
Yesterday’s post was about the jolt better known as your diagnosis. When you get your jolt did your message change? Did your level of gratitude increase? Once the shock wore off, did you gain a sense of clarity that may have been just beyond your reach prior to the diagnosis? What types of conversations do you have now and do they differ from the conversations you had before the diagnosis? It’s not uncommon for the cocktail party talk to get thrown out the window. It’s not necessary to keep the focus of every conversation on the diagnosis, but what about your definition of family. What about how you want to improve the planet? What about the education of your kids?
There are really important things to discuss in this world. Do you have time to talk about the weather? Your message is important and needs to be heard. What are you going to do to get the word out?
Spring brings thunderstorms across the nation. When lightning becomes an issue there are lots of stories on the news about how to stay safe under these harrowing circumstances. Every so often there’s a story about someone struck by lightning who survives; isn’t that a miracle. How did you handle your jolt? When the doctor calls and wants to see you in their office the skies start to rumble. By the time you get to their office the skies are gray and the thunder is rumbling and then it happens; the doctor gives you the news and you’re hit by a lightning bolt.
The news disrupts all natural function in your brain…for a moment your fried. One of the key factors to dealing with lightning is to make sure your body is grounded so that the jolt passes through you and although frightning once the initial shock is over the real work begins. The real work is health and healing. The real work is keeping yourself as mindful of your physical, emotional and spiritual health so you keep you mind, body and spirit in balance.
What has happened to you since the jolt. Many people I’ve interviewed over the years say the jolt was the ultimate reality check. It got them to begin asking questions that don’t focus on what they do, but who they are. They have begun to ask themselves how can they be of service to their family and community. Questions about the roadsigns they missed along the way begin to surface and sometimes the reality of racing in an unconscious state is the wake-up call they needed to make the necessary shifts in their life.
Then there are those who throw caution to the wind and abandon their current life for the life they always wanted. They take that list of 100 things to do before you die and begin making it a reality. The great thing is that once those 100 are done you can create a second list. It’s the jolt that got them to move beyond complacency. Living with gusto is important. I’m sorry that a chronic or life-threatening illness was the jolt you received, but did it work? Have you changed your life in any substantial way? What are you going to do today to move out of complacency? It will serve as a boost (versus a jolt) to your immune system and that’s always a good thing.
Welcome to Caregiver Friday!!!
We set standards every day about different things. When we were in school and your GPA was calculated they gave more weight to an honors class, that helped your average. We give importance and meaning to everything and yet there are many times when we don’t address or give weight to something that impacts so many people. Caregiving is that issue. As a culture we take for granted that caregiving is something we do because we’re expected to, but it’s not given its fair due. When we attach a cultural expectation to an role or action it often loses it’s importance and unfortunately even though there have been many studies, there is an imbalance in services for caregivers vs. patients.
Why is it important? The numbers should propel caregiving to new heights. The statistics show that 25% of all households are impacted by caregiving issues. There are 44 million informal, unpaid caregivers in the country. What do you think would happen if they unionized? Would services appear or would patients across the country suffer because caregivers don’t have the bargaining chip they need without making their loved one suffer, preventing caregivers from passing go, and collecting $200.
There’s money for those who suffer physical illness, institutes and foundations looking for cures fund enormous programs and yet what about emotional and spiritual illness as a result of the physical illness? Why does it deserve any less attention? They say that the squeaky wheel gets the oil and for the most part caregivers have not been squeaky. Caregivers are often too grateful for the help their loved one is receiving to even acknowledge or have the nerve to demand help until they sign the loved one up for hospice and relief for the family appears.
Can we afford to ignore the needs of caregivers? What would happen if caregivers went on strike, even for just one day. I can tell you what would happen; 911 calls would go through the roof; police and fire fighters would be called to help with patients who fall out of bed; emergency rooms would be filled with patients who didnt’ get their medication. Can you imagine the fiscal impact that would have on the local, state and federal community. It would be a day of national emergency if 44 million caregivers abandoned their charges. I’m not advocating a revolution, but I do believe that caregivers need to stop being anonymous.
One way for caregivers to understand their own needs and importance is to visit www.survivingstrong.com and register for the 5-part series, “The Courageous Caregiver”(TM). I hope you’ll take this seriously…I know I do. Share with me how your efforts are validated and acknowledged. How do you get the support you need? Let’s create a network that supports the 44 million caregivers striving to make the impact of illness on loved ones less stressful and ever so hopeful!
Okay maybe you aren’t given the final word on going to war or making national policy, but you are the commander-in-chief of your own health and healing. You get the final word about what treatments you take, what doctors you visit and your attitude. There is no one who can superimpose their beliefs on you because you are the final word in your health. Can you think of anything more powerful than recognizing, acknowledging, and then acting as the Commander-In-Chief of your health? I think it’s incredibly empowering to sit in that seat, take the controls, and make the tough decisions.
The key principle is to do what the President does, surround yourself with the best people possible. You can’t know everything about everything, but given the right information you can make informed decisions. Recruiting the best people possible to help you sort out what’s extraneous and what’s important can mean the difference between success and failure. It’s easy to act like a cat and chase every shiny thing that crosses your path; treatments that promise big results without substantiation are the shiny things. Don’t go toward something just because it’s easy, go toward what will work.
You are being given a lot of responsibility and I hope you take that responsibility seriously. If you hand off control to others how is your voice heard? What will it take for you to step up and take the reins and act as Commander-In-Chief. It’s about developing a sense of conviction. You need a platform and I hope your platform is: increased health, increased peace of mind, and increased quality of life. We know that we can’t cure every illness, but you can set the wheel in motion for emotional and spiritual health. Do you take yourself seriously in leading your corner of the health and healing world? Share your Commander-In-Chief experience…you have a constituency and that’s everyone facing a chronic or life-threatening illness who are still running for office!
As spring makes its way across the country the rains starts and mud becomes a familiar condition to face. Ever try and drive through mud thinking you can make it through only to have the wheels begin spinning? The harder you hit the gas the deeper you sink in the mud. There are two things you can do; you can either sit there and wait for the mud around you to dry out (that could take days or weeks) or figure out how to develop traction under the wheel so you can get some grip and get out.
The diagnosis is the mud. It’s easy to get mired in the mud physically, emotionally and spiritually after you hear the words from the doctor that will forever change your life. I’ve witness way too many people who sit on the pity pot and wallow away in the mud. Mud is slippery, dirty, and very heavy. If you don’t have the tools to get out of the mud you can expend lots of energy but not get anywhere. You become like a hamster on a wheel; going fast but getting nowhere. What will it take for you to get some traction in facing the health challenge?
Good information will allow you to make good decisions, that gives you traction. Having a support network not only to provide comfort but to serve as a sounding board for strategy building gives you traction. Developing good relationships with your providers means you have better access at times when you need it the most, that gives you traction. It’s not rocket science, but you have to make the choice to get out of the mud; no one is going to do it for you. I guess you could call a tow truck to drag you out…who’s that person in your life. The tow truck is the person who has continually saved you from yourself in a variety of situations. Is that the message you want to send to your body that you need to be saved because you don’t have the desire or stamina? I think you can do better!
The mud is a hindrance but you can learn how to gain traction if you get stuck. The real goal is to learn to avoid the mud staying on dry land so you always have the traction you need to continue on our journey to health and healing!