What REAL foodies eat…. I mean, drink.

What REAL foodies eat…. I mean, drink.

Originally uploaded by danleone.

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

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

Originally uploaded by danleone.

Healing…or Not?

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?

Coco sleeping… or is it Zsa Zsa Gabor?

Coco sleeping… or is it Zsa Zsa Gabor?

Originally uploaded by danleone.

Coco describing the Earth’s timezones in her fancy bathrobe

Coco describing the Earth’s timezones in her fancy bathrobe

Originally uploaded by danleone.

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

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

Originally uploaded by danleone.

beautiful girl and her geetar

beautiful girl and her geetar

Originally uploaded by danleone.

The Holy “Grale” – grape kale juice

The Holy "Grale" – grape kale juice

Originally uploaded by danleone.

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

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

Originally uploaded by danleone.

breakfast- i love figs and concord grapes!

breakfast- i love figs and concord grapes!

Originally uploaded by danleone.

Boston Organics delivery!

Boston Organics delivery!

Originally uploaded by danleone.

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

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

Originally uploaded by danleone.

Morning (into afternoon) Juice

Morning (into afternoon) Juice

Originally uploaded by danleone.

Purgatory

Morning Green Juice

Morning Green Juice

Originally uploaded by danleone.

kitchen sink juice under the grapes

kitchen sink juice under the grapes

Originally uploaded by danleone.

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

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

Originally uploaded by danleone.

precious angel at breakfast

precious angel at breakfast

Originally uploaded by danleone.

My Leg is Going to be Famous!

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.

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

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

Originally uploaded by danleone.

1/2 Gallon Superfood, Green Smoothie

1/2 Gallon Superfood, Green Smoothie

Originally uploaded by danleone.

Christina trying her first s´more

Christina trying her first s´more

Originally uploaded by danleone.

Morning Mate

Morning Mate

Originally uploaded by danleone.

Killah

Killah

Originally uploaded by danleone.

Supposed to be sleeping – playing dress-up instead

Supposed to be sleeping – playing dress-up instead

Originally uploaded by danleone.

Cousins 4-ev-er

Cousins 4-ev-er

Originally uploaded by danleone.

Untitled

Originally uploaded by danleone.

Birthday Boy Sad – Too Young For Such Angst

Birthday Boy Sad – Too Young For Such Angst

Originally uploaded by danleone.

Living with Pyoderma, You Are Courageous

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)

Hey, gumba!

Hey, gumba!

Originally uploaded by danleone.