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Do Your Research
After more than twenty-seven years of dealing with the medical community, Lee and I have learned more than we thought we would ever have to know about the human body, various illnesses and their treatments. We have also learned a great deal, mostly through trial and error, about dealing with medical providers, good and bad.…
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Self-Care for Caregivers
This life with CRPS is a marathon, not a sprint. If caregivers don’t take care of themselves, they cannot be there effectively for their patients or loved ones over the long haul. For those of us who are caregivers, it is “normal” to focus almost exclusively on the well-being of the person suffering with CRPS.…
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Stress and CRPS
There is a very direct correlation between stress and inflammation and pain for CRPS patients. As a care giver, a central responsibility is to understand what causes (and reduces) stress for your loved one or patient. This requires clear communication with the patient to best understand what causes them their particular stresses, and doing what…
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Setting Expectations
Most people develop expectations about how we think our lives will unfold- careers, family, health, love, friends, etc. We have our own life’s “movie” in our mind’s eye, and subconsciously expect that it will unfold the way we hope. Anyone who has been on this earth for more than two or three decades probably realizes…
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Eight Principles of Patient-Centric Care
After more than twenty-seven years of interacting with the medical community, Lee and I have learned a lot, good and bad, about the process. A primary issue is how to find truly patient-oriented care. Every hospital, clinic and doctor’s office pays lip service to the concept of putting their patients first, but we have found…
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My Wife is My Hero
Some caregivers support “clients” or “patients” professionally. At times, they may become friends. Other caregivers support “loved ones”- spouse, child, close friend, parent, etc. In my case, I support my wife Lee. Sometimes, it is too easy to find myself falling into the trap of feeling helpless or angry that I cannot do anything to…
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Expand Your Support Network
People who have CRPS, and those who care for them, naturally focus a lot of attention on pain and how to treat it and live with it. Another natural outcome of dealing with CRPS is understanding how it can isolate you from the rest of the world. CRPS, or any chronic debilitating illness, changes your…
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Resilience
It has been too long since my last entry. Hard to believe that the winter of 2018 is gone and we’re about to enter Spring 2019! In that time, Lee had another surgery on her injured foot. As those of you who understand CRPS may know, any additional trauma (injury, surgery, needle stick, etc) can…
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Expanding Awareness of Those Suffering with Pain
Lee and I spend a lot of time thinking about how to increase awareness in our community about the plight of people suffering from not just CRPS, but severe chronic pain in general. Here are some troubling statistics about the epidemic of chronic pain just here in the U.S. If those of us directly or…
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My Wife Has Taught Me About a Life Well Lived
I have said it before. My wife Lee is my hero. We have spent the past 31 years together, during which she has been battling CRPS and a host of other conditions for 28 of those years. In that time, I have witnessed her courage and determination in fighting for a better life- better medical…