How I Finally Kicked Prednisone’s Ass

After a three year fight with the infamous steroid Prednisone — I’m proudly standing in the middle of the ring and raising my arms in victory.

In July of 2014 my rheumatologist prescribed a moderately high daily dosage of 35 milligrams of Prednisone to relieve my chronic inflammation and joint pain caused by the autoimmune disorder — sarcoidosis.

The morning after taking my first dosage I felt awful. Like frat party hung over awful. Nausea, headache, hot flashes, exhaustion.

Then, 48 hours later, while vacationing at the New Jersey shore I felt like Superman. Tossing the football around with my sons, swimming in the ocean, riding waves like I had never been sick.

The Problem

Prednisone will relieve pain and inflammation. But nestled inside those little white pills is a real danger. Long term exposure to Prednisone can lead to a weakened immune system and cause weight gain, depression, diabetes, osteoporosis and a cavalcade of other fine ailments.

Prednisone is not a cure. It’s a mask. A contradiction. It reduces inflammation and it improves the immediate quality of life while silently and slowly destroying bones and organs.

For the last 3 years I have struggled to reduce my dependency on Prednisone. Following my rheumatologist’s instructions I began slowly weening off the drug— 5 milligrams at a time. I worked down to 10 milligrams a day but every time I dropped below 10 the pain and inflammation would return and intensify.

My rheumatologist explained that I should prepare to for a life sentence with Prednisone.

While on Prednisone, I gained about 20 pounds. When I broke a bone in my foot, it took nearly 5 months to heal — tripling the amount of time it should have taken to heal. And though I was never diagnosed with depression, I did endure long bouts helplessness and loneliness which I believe was triggered on my dependency on a drug that was murdering months of my life away.

The Challenge

Over Labor Day weekend, my good friend Casey challenged me to a two-week vegan challenge.

At first I balked.

How could I, a life long carnivore, give up t-bones and hot wings? It wasn’t me. I wasn’t a vegan. I don’t wear sandals. I don’t hug trees.

I sent him a text saying I would think about it.

And I did.

I sent another text explaining that I would try to slowly ween off meat and dairy — one meal at a time.

Then I thought about it more. I thought about my future-self bloated, ripe with diabetes, brittle-boned and blind. I thought about my children. About playing football on the beach again. I thought about how helpless I felt. And I thought about dying young.

So in a flicker of bravery I said fuck it. Two weeks of no dairy, no meat. Cold turkey. Let’s do this.

Why Vegan?

Casey also told me to watch the documentary, “What the Health, an unflinching look at how the meat and dairy industries are sleeping with the government and how meat and dairy foods trigger so many autoimmune and inflammation issues.

So I watched it. At first I was skeptical and even a bit naive. Why would my government, the one I Pledge Allegiance to every morning, lie about the importance of milk? Humans need milk. Milk does a body good. Right?

Understand, I’m not a doctor. I’m just a guy with a blog and autoimmune disorder who’s trying to live his best life. But if you’re struggling with inflammation or an autoimmune illness I would recommend looking at your diet. You may realize the food you’re fueling your body with is actually the stoking the fire of your illness.


In his article , “How Does Meat Cause Inflammation?”, Dr. Michael Greger explains how a single meal of meat, dairy, and eggs triggers an inflammatory reaction inside the body within hours of consumption.


The Victory

After smashing through the two weeks, feasting on only plant based foods, something happened.

I felt good. Like really good. Like how I felt during the first few weeks on Prednisone. I was feeling so good I decided to abstain from Prednisone for one day to see what would happen. I did. And I felt great. Then one day without medication turned into two. Then a week without Prednisone passed. Then another week. And suddenly I was living a Prednisone-free life.

When I decided to forego my medication I did not consult my doctor. I made a simple, conscious decision to improve my own health.

I’m learning that the most unsatisfying thing is to be a spectator to your own life.

~~~

I’ve been vegan for 8 weeks. I’ve been Prednisone-free for almost 6 weeks. I wish I could tell you that it’s been a hard lifestyle change but it really hasn’t. Sure I miss bacon and cheeseburgers and bacon cheeseburgers but don’t miss the pain. I don’t miss the dependency. I don’t miss being a spectator.

I’ve lost 10 pounds in 6 weeks. My inflammation and joint pain have completely disappeared. And most importantly I no longer feel helpless. I have gained control over my health. I’m now in the ring, proactive in my fight, which is the most crucial step for anyone living with a chronic illness.

I’m not symptom free. Sarcoidosis caused irreversible brain damage that effect my balance and vision but since converting to veganism I’ve found a fighting spirit I thought I had lost.

I just think if you can find a reason to fight — and there’s always reason to fight — if you can make changes, if you can find the courage to roll up your sleeves and trade punches with your illness you’ll learn you’re a hell of a lot tougher then you ever thought you were.

And you may realize that you were the champion your life so desperately needed all along.

Be well (Eat well),

Jay

I want to thank my friend Casey for challenging me. I owe you brother. I guess some times we all need a push to find our better selves.

Why I Celebrated My Worst Day

When I decided to celebrate my worst day I had romantic dreams of baking a chocolate cake, coating it with vanilla icing and beautifully decorating it with some unabashed inspirational quote.

Here’s what happened.

It’s okay to laugh. Seriously. I know, it’s high fructose, high caloric train wreck.

Just in case you can’t read it, beneath the scattered sprinkles, squiggled in red gel is the iconic line from Bruce Springsteen’s Badlands — “Aint no sin to be glad you’re alive.”

Here’s why.

This past September 4th was a big day for me. An anniversary of sorts. So I baked and decorated a cake to commemorate the day.

On September 4th, 2013 I had my first MRI revealing my brain damage–large chunk of my cerebellum had degenerated.

The date has now become a personal milestone. In the days and weeks following September 4th, 2013 there was, as you could imagine, a quiet tension. The kind of quiet tension that lingers between the pages of hospital waiting room magazines.

With every test, with every confused doctor I grew more desperate, more convinced that I was going to die a young man.

Four years later my brain damage is still unaccounted for.

However, eighteen months after the MRI, a muscle biopsy revealed an autoimmune disorder, sarcoidodsis, that causes inflammation not degeneration.

Four years later doctors are still nosing through medical journals searching for precedent. They are still hypothesizing.

I say let them hypothesize. For the only fact that matters today is — I’m still alive. And according to the Boss, that ain’t no sin.

If the September 4th picture marks my worst day, a day which initiated the worst stretch of days I have ever experienced, I’ve learned that celebrating your worst day is an important step toward healing. Though I’m not physically healed, and may never be, mentally, emotionally and spiritually I’m stronger for having endured my worst day.

Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given circumstances, to choose ones on way. Victor Frankl author, psychologist, neurologist

Suffering is lonely work.

Often, when we suffer we alienate the very people who take us to our appointments, who hold our hand, who cry alongside of us.

It’s understandable that when we suffer we become selfish. We fall into ourselves. Yet by doing so we fail to recognize the anguish others are in because of our suffering.

Cutting cake (even a poorly decorated one) and celebrating your worst day is an important step toward healing.  A sugary reminder of how resilient the human spirit can be and how our lives, whether we want the responsibility or not, are the models that others will follow.

Be well,

Jay

How Sarcoidosis Inspires Me to Be Creative Everyday

This article originally appeared on themighty.com.

After I was diagnosed with sarcoidosis I spent weeks circling the drain of self-pity.

I was convinced my problems were worse then anyone else’s. I blamed myself. I cursed God. When my wife tried to talk to me I was tight-lipped and curt. I was angry and afraid and spiteful.

Why was this happening to me? I believed I was too young, too important, too full of promise to be stricken with such a nasty, mysterious disease.

As a child I dreamed of becoming a writer. Sitting on the edge of my bed I would scratch down stories in marble notebook.  Stories about a superhero chicken, a baseball playing iguana and 15 year aerospace prodigy name Gunnar and his dog Comet chosen to lead a select group of teenage astronauts in a shuttle mission to Mars.

But then I grew up. I got my first job flipping hamburgers, bought a car,  tried to meet girls and stopped writing.

I went to college, became a teacher, meet a girl, got married, fathered three children, got sick and in one of the most important decisions of my life– started writing again.

“Creativity is a great motivator because it makes people interest in what they  are doing. Creativity gives hope that there can be a worthwhile idea. Creativity gives the possibility  of some sort of achievement to everyone. Creativity  makes life more fun and interesting.”- Edward de Bono

Sarcoid inspires me to write everyday. Though I can not predict the  course of my disease  I am responsible for every word I write. Words that when they are fastened and forged together, energize me with power and strength to fight my fickle disease.

If you are struggling with a chronic illness I challenge you to return to your childhood, to become a creator again. Creating is a profoundly constructive way to distance yourself from your pain, to remind you that you are stronger than you think you are.

Paint, draw, sculpt, build a bird house, make Christmas ornaments, restore an old car, get crazy with a crock pot. Create whatever makes your soul sing.

Despite popular belief, creating is not about money or fame. It never has been. It’s about totally losing yourself in a process until your self-pity is silenced, your spirit is renewed, and you’re afforded needed relief from the pains of living.

 

20 Things My Chronic Illness has Taught Me

 

A few days after a muscle biopsy procedure my doctor called and delivered the name of my mysterious internal antagonist–Sar-coy-something.

As I scratched down its letters on the back of a Chinese take-out menu he explained the intimacies of my disease, offered some reassurance and outlined a plan of attack. When the call ended I did what most modern creatures do– I tossed open my laptop, summoned Google and misspelled my disease in the search bar.

S-a-r-c-o-i-d-o-s-i-s is an autoimmune disorder that inspires little knots of inflammation to gather and break dance in joints, muscles, lymph nodes and vital organs of an unlucky host.

In most cases, after a few rounds of America’s favorite steroid–Prednisone– sarcoidosis two-steps into the desert town known as Remission.

However, according to the Cleveland Clinic, 10% of sarcoid patients suffer from my kind of sarcoid–the chronic kind.

In my struggles with this often misspelled disease I’ve learned a few things. In fact, my disease has been (dare I say it..) the best (…and by best I mean most relentless, ball-busting, humbling, homework-on-the-weekend ) teacher I’ve ever had.

I’ve been a student in the school of sarcoid for a little over a year now.

In that time I’ve experienced anger, confusion, regret and have been so disenfranchised with the entire medical community that I refused to watch Grey’s Anatomy.

Ironically,  since my diagnosis I’ve learned to more fully appreciate the value of love, the importance of humor and that sometimes simply getting out of bed is the bravest thing you can do.

Please understand–I’m not an expert. I’m a C+ student still struggling to comprehend the curriculum. But since my enrollment, I have learned a few things about coping with a chronic illness that I would like to share…

  1. When you’re suffering– its okay to be selfish and take care of yourself.
  2. Talk openly about your illness. Your advocacy will help others
  3. Say bonvoyage to Cap’ n Crunch and modify your eating habits.
  4. Just because you feel like crap doesn’t give you the right to be a jerk.
  5. You may not be able to control your illness but you sure-as-hell can control how you respond to your illness.
  6. Keep a journal of your symptoms.
  7. Keep your doctor’s appointment.
  8. Schedule morning doctor’s appointments and celebrate the appointment with lunch. If possible, have a beer– you deserve it.
  9. Be a self-advocate. Ask your doctor questions and demand answers.
  10. Network with other patients.
  11. Don’t be ashamed of your disease. Everybody has something wrong with themselves. See Justin Bieber.
  12. Have your doctor write you a letter detailing your symptoms (And if applicable, give the letter to your employer.).
  13. Accept your illness. Denial will only compound your suffering.
  14. Be kind to others. Kindness is a great distraction from your pain.
  15. Be patient with your medication– sometimes finding the right medication can be a long, tiring process.
  16. You’re tougher than you think.
  17. Do something constructive–find an outlet for your pain.
  18. Curb the cat videos and use the internet as a vehicle for seeking support.
  19. Read medical journals– even if you don’t understand every word.
  20. Continue to hold yourself accountable.

If you’re warring with sarcoidosis or any autoimmune disorder for that matter, know that you’re a warrior. Know that it takes nervy defiance and stone-cold courage to wake up, soldier on and fight your every day internal war.

Be well,

Jay