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

Feel The Burn

I just returned from a trip to the Dominican Republic. My parents brought the family together to spend time together and celebrate us as a family. The trip was fantastic! It’s great when you can spend time with people you love, know, and have your back. Being with people who are a lifeline reinforces our connection beyond our bodies. It provides us with a context for our lives and allows us to practice the art of giving and receiving.

I’m a water baby. I’m a cancer so I love the water. I lived on the east coast the first twenty-five years of my life, and the west coast the next fourteen years. Access to the water is life affirming. Currently I live in the Rocky Mountains at six thousand feet so any time I can see the ocean I’m ecstatic.

Ecstasy has its price. Upon getting to the beach I submerged myself in the ocean. I was in the water for quite a while. My family joked that if they wanted to visit with me they’d have to go to my office in the water. Unfortunately, all good things must come to an end.

I knew I was sunburned even though I had on sunscreen. I didn’t reapply often enough and wasn’t wearing a shirt so my shoulders and upper back became sunburned. Actually, they became more than sunburned because after leaving the water the blisters began to appear. My back and shoulders were covered with blisters waiting to burst. I did this to myself and that pissed me off, but I couldn’t turn back the clock.

I wore multiple shirts keeping the blisters clean and dry. The big surprise when it was time for bed. As I tried to sleep the pain was excruciating. I changed positions trying to relieve the pressure on the blisters but my body was in full revolt. I was no longer in control, my body was at the reins and it wasn’t pretty. I needed a plan, a solution, a resolution to the pain.

I realized that the only way to get out of the pain was to go into the pain. I had to immerse myself in the pain. I had to be one with the pain. I dove in! As I was sitting up in bed I befriended the pain. I was focusing on my breath and settled down living in the journey. Trust me it wasn’t easy, but it did quiet my mind and my body. My body understood that although I had accosted it; I was trying to make amends. I wasn’t ignoring my body (not that I could even if I tried), but I was in the trenches experiencing the pain from the pain’s point-of-view.

This journey lasted for three nights. Unlike many of you experiencing chronic pain, mine was time limited. I did learn valuable lessons. I learned that my body, mind, and spirit working together create amazing results. I gave myself the gift of diving deep and emerging with a new understanding of pain and it’s relation to my body. I have come to appreciate the unity of merging with the what’s going on in my body.

Fortunately the experience didn’t damper my trip at all. I got back in the water after a few days very protected and for a very short period of time, but I also know that salt water heals the skin. In my case it heals the body, the mind, and the spirit. I not only had a fabulous trip with my family, but I learned new things about my own capacity for renewal and resiliency. I learned new ways of coping when facing adversity. I have a new appreciation for what the body can handle!

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

Responding to the Call

We’re all called by something.  When diagnosed with a chronic or life-threatening illness it’s your health that is sounding the call.  I’m amazed how many people go through the motions when answering the call thinking they are doing all they can to get well.  The truth is that a half-hearted attempt isn’t going to suffice.  You have to put everything you have behind your beliefs and turn them to actions.

I heard a radio ad today that shocked me.  It isn’t often that illnesses or life circumstances related to health advertise on the radio, but lo and behold the voice of those facing chronic and/or debilitating pain has a radio commercial.  The last line of the ad says, “Speak Up…Speak Out…Take Action”.  It’s clear and to the point.  Is there any part of that phrase that you can argue with?  Do you think this phrase only pertains to those facing pain issues?  Don’t be ridiculous, every patient should consider these three steps as part of their treatment regimen.

When you  respond to the call, in this case “Speak Up…Speak Out…Take Action” you are activating parts of your physical, emotional, and spiritual being that may have been napping for a very long time.  It’s this motto, slogan, or challenge that will provide you with a road map to making the great shift; moving from a passive stance as a patient to an active patient.

This ad was heard on NPR following an interview on “Talk of the Nation” shedding light on the issues related to individuals who are intellectually challenged.  One caller whose son has Cerebral Palsy shared how that when people stare at her son she engages them in conversation.  She will ask them if they have questions.  Her idea is to engage in a way that she’s speaking out by encouraging others to voice their unease and lack of understanding. 

Don’t you think the same is true when you see a woman in a store wearing a baseball cap or scarf clearly with no hair beneath?  How can they speak up/speak out/take action?  It doesn’t have to be out for the whole world to hear, but something very private, but it needs to happen.  You need to respond to the call with your biggest voice possible.

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

Pain is All Consuming

Ever see the television commercial for depression?  It talks about how depression doesn’t just impact the person emotionally, but physically, socially and although not spoken, spiritually.  It is all consuming, and that’s one type of pain.  What about the pain that is associated with illness, wouldn’t that be all consuming?

Let’s face it, pain is an unwelcome intruder.  It isn’t invited, it isn’t asked to stay, in fact we do all we can to rid ourselves of pain.  The problem is that eradicating pain and still being functional don’t always go hand-in-hand.  It’s important to understand your pain.  When are you most impacted and how long does it last?  As a college student I began the long and painful relationship with arthritis, specifically in my feet.  Walking was unbearable and the medications didn’t always work.  Over time I had to understand and plan my days around the pain until I could find more definitive treatment options that would alleviate the pain.

Pain from illness is not like twisting your ankle during a basketball game.  You can’t just walk it off and expect everything to be okay.  It’s important to find strategies, treatment, providers who truly understand pain.  If you’re looking for a provider ask them specific questions about their experience with pain, and not simple pain, but complicated or chronic pain.  Don’t expect all doctors to be experienced with anything other than “normal” pain.  It’s important to find a pain management program or a palliative care physician whose knowledge of pain goes beyond the basics.

If you are visiting an allied health practitioner the same holds true.  Don’t assume that because someone has a practice that they understand how to handle pain. As we mentioned above pain is multi-dimensional and unless the provider understands all the ramifications of your pain experience you’ll get more of the same and the pain will go on.

Don’t make excuses for your pain.  It’s one of the most personal experiences those with illness will encounter.  It impacts our physical being and alters our way of interacting with the world.  Many facing ongoing pain retreat because it’s the only way to insulate themselves.  It distorts how we see the world.  Networking with others who experience extreme or prolonged pain may help you find the necessary resources.  Trust me, this is far beyond “take two aspirin and call me in the morning”.

How do you deal with pain?  How does it impact your daily life?  What have you found to alleviate your struggle with pain?  How have you changed your relationship to pain?