What REAL foodies eat…. I mean, drink.

Posted by danleone on October 24th, 2012 filed in uncategorized
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What REAL foodies eat…. I mean, drink.

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Morning juice and Scrivener. Trying to ignore the Stella D’Oros and Greek cakes in the background

Posted by danleone on October 20th, 2012 filed in uncategorized
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Morning juice and Scrivener. Trying to ignore the Stella D’Oros and Greek cakes in the background

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Healing…or Not?

Posted by danleone on October 1st, 2012 filed in Chronic Illness, pyoderma gangrenosum/health
2 Comments »

It has been over a year and half now since my last flareup began. Guess what? A year and a half later and I am still dealing with this same flareup. Since February, the flare has been describing a trajectory towards healing. But healing does not mean healed. Healing does not mean a permanent fix. It does not describe an endpoint no more than growing describes a child or learning describes a student. Healing happens on a continuum.

I feel the need to defend the obvious because people are often patting me on the back because I tell them that I am mostly healed. Thanks for the encouragement. I know I can use as much as I can get these days. But in the same breath, do not underestimate what I mean when I say I am healing.

To say I am healing is like saying the glaciers are moving. Indeed they are, but they are moving on a geological scale. When most of us wake up with a headache we take and aspirin and can say we are healed all within an hour. When we take antibiotics for an infection, we are often healed within 5 days. When we suffer a sprain, we are often running again within a few weeks. With those numbers as a baseline, it is hard to comprehend the fact that the trajectory of my “flareup” can take months, even YEARS to fully “heal.” When I am at the beginning of a flare, I have already come to terms with the prolonged battle that will ensue. Of course, there have been false starts and sometimes the cocktail of drugs I am on can empirically reduce the length of a flareup, but that still takes months.

To say I am healing redefines the very word. I have had flares that ended on a Saturday after six months of pain, wound care and increasing dosages of meds only to have a new one start on Monday. Can anyone REALLY say that I was healed during those two days? Did it REALLY matter? What is the definition of healed? Does it simply imply a lack of symptoms? There is no test for Pyoderma Gangrenosum. No one can look at my blood between flares and state that I have PG. Whether the momentary peace lasts for a day or years, there is nothing to hang my hat on. No point in time where I can say “healed” with any level of confidence.

To say I am healing completely ignores my emotional state. As I’ve written about here, it is the time between flares that is the most stressful for me and my family. Though I actively avoid catastrophizing the situation, I do have history on my side. I know that a single spot on my leg can translate into a full on flare that can cripple me. Trauma to my skin may, or may not, result in a painful flare. Between flares is when I am more engaged with my family, throwing the football with Marc, exercising my thumbs with Michael and dancing with Coco. Each of these activities has resulted in a flare.

When there is no peace, can there be healing?

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Coco sleeping… or is it Zsa Zsa Gabor?

Posted by danleone on September 30th, 2012 filed in Baby Goats, funny, uncategorized
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Coco sleeping… or is it Zsa Zsa Gabor?

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Coco describing the Earth’s timezones in her fancy bathrobe

Posted by danleone on September 30th, 2012 filed in uncategorized
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Coco describing the Earth’s timezones in her fancy bathrobe

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gynostemma tea, fresh aloe vera and cactus pear – anti inflammatory roundhouse kick!

Posted by danleone on September 29th, 2012 filed in uncategorized
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gynostemma tea, fresh aloe vera and cactus pear – anti inflammatory roundhouse kick!

Originally uploaded by danleone.


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beautiful girl and her geetar

Posted by danleone on September 25th, 2012 filed in uncategorized
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beautiful girl and her geetar

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The Holy “Grale” – grape kale juice

Posted by danleone on September 23rd, 2012 filed in uncategorized
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The Holy "Grale" – grape kale juice

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Dinner – Kale and Grape Juice (avoiding the pasta that is six inches from that mason jar)

Posted by danleone on September 17th, 2012 filed in uncategorized
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Dinner – Kale and Grape Juice (avoiding the pasta that is six inches from that mason jar)

Originally uploaded by danleone.


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breakfast- i love figs and concord grapes!

Posted by danleone on September 17th, 2012 filed in uncategorized
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breakfast- i love figs and concord grapes!

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Boston Organics delivery!

Posted by danleone on September 13th, 2012 filed in uncategorized
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Boston Organics delivery!

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Last Hurrah Before School Starts… Make Your Own Pizza at Unos…

Posted by danleone on September 5th, 2012 filed in uncategorized
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Last Hurrah Before School Starts… Make Your Own Pizza at Unos…

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Morning (into afternoon) Juice

Posted by danleone on September 3rd, 2012 filed in uncategorized
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Morning (into afternoon) Juice

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Purgatory

Posted by danleone on September 2nd, 2012 filed in Chronic Illness, pyoderma gangrenosum/health
6 Comments »

It has been over fourteen months since my current PG flare flared. Fourteen months resulting in me facing some harsh realities. I received my handicap parking sticker. I was prescribed a wheelchair. I had to take another leave of absence from work and yet another hospital stay. The profound pain last October through December meant I slept at the kitchen table. It meant that I slept face down in my arms at the effing kitchen table! FOR MONTHS! I could not lie down. Even while at the hospital, I had my leg up in slings suspended from the ceiling with the only point of contact with my legs were the thin straps around my heels. You get it now? I was in the proverbial “bad place.”

Over the last couple of months, the wounds have subsided. My wound care doc does not even know what to do with me. At this point, I am good to go. The smart people give me all the advice. Just don’t overdo it. Don’t start running marathons, swimming laps or playing soccer. Walk…but not too much. Shower, but be careful what the water touches. Forget soap! Sit down but keep your legs up. Move them often but don’t smash them against one my Baby Goats. Work out in the yard, but make sure insects don’t bite you. Sure, go ahead and keep your legs out in shorts but don’t get sun on them and don’t scare kids at the mall with full length scars on my lower legs and thighs. All sorts of advice. All of it bullshit. All of it made up crap because no one knows anything about this disease.
But it doesn’t matter today. My wounds are somewhat closed. There is the smallest dot of a wound that you wouldn’t even notice. The pain is random. Some days it gets intense and I find myself reaching for the morphine and neurontin and oxycodone and anything else I can chew on. For the most part, though, all PG sufferers should be as lucky as I am today. I get messages from people all the time. “Dan, I am glad you are feeling better.” “Dan, let’s hope you are out of the woods now.” All of which I am happy to receive. The reality though is I can’t say that I am feeling better.
Herein lies the problem…it is precisely this limbo stage that rattles my nerves. I feel as if I am peering over the edge of a cliff; the slightest breeze can send me flying over the edge. This is the stage that wreaks havoc with my emotions, makes me shaky and chips away at any coping mechanisms I may have developed.
When in a full-on flare, I am in survival mode. My body and my mind are ramped up in a virtual circling of the wagons. My attention is 100% devoted to dealing with the flare. Of course it is stressful and of course that stress alone will take a toll on my health, but at least it is a stress that I compare to the feeling of jumping out of a plane with a parachute. It is akin to an adrenaline rush as my body focuses on putting out the fire.
Now, the flame has been reduced to an ember. The binary fight or flight response has been replaced by a constant hum of pain, fear and threats. Obviously, I am grateful. But I do not kid myself that I am truly “feeling better.”
Thank you for listening.

 

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Morning Green Juice

Posted by danleone on September 1st, 2012 filed in uncategorized
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Morning Green Juice

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kitchen sink juice under the grapes

Posted by danleone on September 1st, 2012 filed in uncategorized
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kitchen sink juice under the grapes

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Queen Mum… or whatever she calls herself, shopping at Target.

Posted by danleone on August 11th, 2012 filed in uncategorized
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Queen Mum… or whatever she calls herself, shopping at Target.

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precious angel at breakfast

Posted by danleone on August 11th, 2012 filed in uncategorized
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precious angel at breakfast

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My Leg is Going to be Famous!

Posted by danleone on August 4th, 2012 filed in Chronic Illness, pyoderma gangrenosum/health, uncategorized
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my leg is going to be famous!

Originally uploaded by danleone.


Should I be insulted that my doc calls me “recalcitrant?” Journal of the American Academy of Dermatology. The article highlights the fact that my PG responded well to ustekinumab (Stelara) treatment.

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Breakfast – Figs and Aviva’s Wild Harvest Yerba Mate (5 lb bag)

Posted by danleone on August 4th, 2012 filed in uncategorized
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Breakfast – Figs and Aviva’s Wild Harvest Yerba Mate (5 lb bag)

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1/2 Gallon Superfood, Green Smoothie

Posted by danleone on July 31st, 2012 filed in uncategorized
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1/2 Gallon Superfood, Green Smoothie

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Christina trying her first s´more

Posted by danleone on July 29th, 2012 filed in uncategorized
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Christina trying her first s´more

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Morning Mate

Posted by danleone on July 24th, 2012 filed in uncategorized
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Morning Mate

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Killah

Posted by danleone on July 22nd, 2012 filed in uncategorized
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Killah

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Supposed to be sleeping – playing dress-up instead

Posted by danleone on July 20th, 2012 filed in uncategorized
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Supposed to be sleeping – playing dress-up instead

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Cousins 4-ev-er

Posted by danleone on July 20th, 2012 filed in uncategorized
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Cousins 4-ev-er

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Posted by danleone on July 20th, 2012 filed in uncategorized
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Untitled

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Birthday Boy Sad – Too Young For Such Angst

Posted by danleone on July 20th, 2012 filed in uncategorized
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Birthday Boy Sad – Too Young For Such Angst

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Living with Pyoderma, You Are Courageous

Posted by danleone on July 18th, 2012 filed in Chronic Illness, pyoderma gangrenosum/health
2 Comments »

That title is a statement of fact. If you are living with PG (or any other chronic condition for that matter), you are already courageous in my book.  Though I find articles that begin with a dictionary definition and then expand on it to be bad form, I think it is a worthy exercise to define “courage.”  I feel there is a tendency for people to believe that courage is the DECISION to put oneself in harm’s way without fear.  For example, let’s say I was  walking down the street and smell smoke and notice a house  on fire;  flames shooting out of a second floor window. I then notice a child in an adjacent window pounding on the glass.  Pleading panic in her eyes. At that very moment, I have a choice; to be courageous and run into the burning building in an attempt to extricate the child or I guess I could just scream up to her and say “THE FIRE DEPARTMENT IS COMING! HANG IN THERE!”

This isn’t a discussion of the morals of running into burning buildings, but I believe we can all agree that a decision to attempt the rescue is an act of courage.  My point now becomes, what happens when you are not given such a binary choice? What happens when you don’t even perceive a choice? What happens when the fire that burns is inside you.

Living with a chronic condition is not a choice. Pain, discomfort, anxiety become us.  We often feel helpless, hopeless, weak, dependent and vulnerable. How can there even be room left in us for courage? We also know that every human experiences the above emotions but to varying degree. So, how do we even know if one courage is greater than the other?

My contention is that in addition to the obvious example of bravery above, courage is the quality of mind that allows you to face both external OR INTERNAL events without letting fear stop you. Notice I didn’t say “without fear?” As anyone living with a chronic illness can attest, fear is a normal part of our existence. We fear pain, our future, our impact on our families and even our very existence. We fear becoming dependent or becoming less than human.

If you wake up every morning and can swing your legs to the floor knowing that it will cause searing pain; if you can change your dressings knowing that it will be ugly and time-consuming and painful; if you can mobilize yourself at the first sign of a flare despite fear of the unknown; if you can research and become more knowledgeable than even your doctors; if you can seek alternative modalities despite what the so-called experts say; if you can educate others (if they are interested) in this condition; if you can find the energy to support others with PG; if you can even remember to take your medicine; then you, my friend, are not only courageous, you are my hero.

(As is often the case with my early morning writing, I am not going to spend much time proof-reading this post. The more I let it linger, the less than chance that it will ever be posted. I would rather just let it live exactly as I’ve written it. Please forgive any typos, or incoherent thoughts)

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Hey, gumba!

Posted by danleone on July 15th, 2012 filed in uncategorized
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Hey, gumba!

Originally uploaded by danleone.


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