Thursday, September 22, 2016

Finding the "Ability" in "Dis"abiliy

When your Ability is a moving target, 

finding the balance and productivity.

You are disabled.
What does that mean?
What are your first thoughts?
What do others think of those disabled?

Judgement day is an actual day if you are ever, ever are going to get Social Security to help you survive.

Finally you think. Some sort of income, insurance coverage once again. 
Except, disability comes with all sorts of challenges.  First off, normal things
that people take for granted, 
are more difficult. 

Everyday life takes more time,
 more effort.

Much more emotional effort, perhaps 
where none existed before.

Having a disability is not like being on a
 treadmill, but more like
a roller coaster ride. With my arthritis, one
day I can be fine, the next day I can't move.

And that's beyond the daily struggles.

I used to go to the gym because it made me feel great and it helps maintain weight.

Now, going to the gym 
is like a full time job.

Getting out of bed takes thought. 
I have to think before I move or I can injure myself.

Every morning, 
my body has a violent fight 
with itself, the pain is immense 
and frequently nauseating. 

It's not a pretty sight.

After about 15-30 minutes, I'm ready
to head downstairs for some iced green tea, water and then some coffee.

After 2 hours I can function, to 
whatever degree I might.

I can't sit, stand or lay down comfortably
for more than an hour without pain.

Pain is totally consuming not only 
physically but also mentally. 

Some days it's gym,
 try to accomplish something,
 then meditation leading to a nap.

If my rhythm gets thrown off, the
I have to consider all the mental
and physical effort to get something done.

Like a doctors appointment. Or, a birthday
party. Dinner at a friends.

Daily I only have a finite amount of energy with no fuel gauge, so it's impossible
how I'm going to feel 2 weeks from now.

Sometimes the gas just runs out,
and I melt like ice cream on
a hot sunny summer day.

We recently attended the 
Connecticut Open
Tennis in New Haven. 
We do this annually.

Most mornings I would go back to bed.
Just being out and about everyday is very
stressful on my body.

And don't get me started about riding in
I have trouble getting in and out of a car, 
let alone sit in one for a long time.
It's akin to torture.

Hey, but life goes on.
I want to enjoy it and be in the 
moment as much as I can.

And I can't give up.

I try to stay positive, healthy and 
I find peace in my photography 
and my Photoblogumentary.

I wish I could have kept working and
contributing, but you can't anymore
when everyday is a mystery.

My doctors say at least I can joke and laugh about it.

What most people don't see is the tears of the clown.

Hang in there #spoonies and

Keep up the Good Fight!

Wednesday, June 1, 2016

Know someone with Chronic Arthritis Pain? Here are the 5 D's of the Disabling Disease

Discovery, distance, desperation,
 decision and dedication

What is Pain? What is Chronic Pain?

Pain Hurts. 
Like breaking your leg, banging your head
or slamming the door on your fingers.

Chronic Pain Hurts.
All the time. Like stabbing your knee with
a knife on every step up stairs.

Imagine how you feel when you twist
your ankle and all the emotions that 
go with it... you feel stupid, angry, 
helpless, lonely and afraid.

Will I ever walk normal again?
Yes, but it will take time and rehab to heal.
Over time, you heal.

Chronic pain has no healing, 
and seems to stab or twist every day!
 no beginning, progression, and end.

Chronic means forever.

Chronic pain takes over your life and
makes decisions for you. Pain that you deal with on a moment to moment basis.

These five D's are the result of actual
experience. Your pain and or life
experience may be different than mine.

The 5 D's of Chronic Pain

Discovery: This is the moment that eluded you since your (fill in the blank chronic disease) first stirred in your body. Diagnosis and treatment for Chronic anything is not a quick process.

Distance: How far can I run from this predicament? It's just not happening to me. In one word, denial.

Desperation: How can this happen to me? I watch what I eat.... there must be something, someone who can help me. Another word? Depression. A therapist is a must.

Decision: What am I going to do about my chronic disease that causes chronic pain? Am I going to medicate it? Exercise it? Vegan it? What you are doing to prevent and or help your Arthritic body is always a moving target.

Dedication: Being educated on your own body is the best source of advice. You can learn about what is out there and how it helps. Read everything you can about your Chronic pain. Embrace your disability, and keep moving!

Keep up the Good Fight!

Thursday, March 3, 2016

Flare, Flare Go Away; don't come back any day!

5 Ways to douse the flames on your 

furious freakin fickle flares!

I'm not a doctor, and I don't play a doctor on television or any other device. But what I can do is read, everything... voraciously.  I'm about 10 years into a chronic life. And for 10 years I have seen dozens of doctors that still can't pinpoint the "auto immune" disorder from which I suffer. 

Sure, they did find my CPPD, a type of inflammatory arthritis, only when my knee swelled and was drained. 

I have had a nasty flare in my wrists and hips now going on 5 weeks. I have been getting to the gym but I am exhausted. Coming home I have to nap and hardly can stay up past 10pm. That is a wonderful side effect of working out, you get a better quality of sleep. Albeit, if you are like me, you feel as if you did not "recover" from the previous day. Such is the chronic life.

My battle armament, is my mind and my body can't stop moving. If you are like me, looking for answers to your chronic illness, educating yourself about the disease is one of your best defenses. 

I follow news of interest through "feedly", but there are many other news feeds you can use. Type in what you want to get articles on, and bam, you've got a couple a hundred everyday. Of course they don't all apply, but they can help.

How can it help?

On a recent trip to my Rheumy, we talked medication. Side effects. I knew the percentages and make choices. But you know what we don't talk about? What really can help. There are lot's of things that you can do to reduce and prevent flares.

Things you can do in your everyday life.

1. Sleep: Sleep is increasingly becoming important in staying healthy in older age. They believe that poor sleep can have all sorts of negative effects, including inflammation and dementia. I try to get 7-8 hours a night.

2. Diet: A diet high in fats, prepared foods and sugar is a recipe for a flare. To prevent flares, maintain a good weight, eat healthy with lots of green vegetables, fruits, and fish.

3. Exercise: Get yourself all the latest gadgets to track your steps, weight, diet and heart rates. The only way to keep from staying stiff is to not move. However, moving can be tough during flares. But you can't, mustn't stop moving.  My Samsung Gear2 watch buzzes me if I have been sitting to long. And when you keep up activity it gives you encouragement. During exercise, it tracks your heart rate, and give details such as distance, time and calories burned.

4. Green tea: I was always a coffee man. Black, no sugar. So green tea always tasted like well, grass.
I got over it. I look forward to my cleansing green tea in the afternoon. Before bed I brew a cup of decaf green tea. Latest studies said that it can reduce flares in RA patients.

5. Reduce Stress: Yea, right. Easier said than done. Especially when your chronic disorder can change plans, especially fun things. Try to eliminate stress through step 3, and mindfulness. A good therapist can help too.

Keep up the good fight!

Monday, February 15, 2016

How Many More "Glenn Frey's" will there be until there is a Cure for Arthritis?

No Cure, difficult choices for Sufferers.

Play to hear Glenn Frey and the Eagles.

 Ten days before my 57th birthday on January 18th. we mourned the loss of one of music's greats, Glenn Frey. I never met Glenn, but followed his entire Career. Glenn Frey, like me is from the Detroit area, he went to High School a couple of towns over in Royal Oak. 

Glenn graduated in 1966 from Dondero High. The same High School that author Judith Guest, '54, (Ordinary People won an Academy award for best picture) graduated from. And legendary activist Tom Hayden was a graduate in 1956. I graduated from Brother Rice in 1977. Coincidentally, I would hold the Dondero HS pool record in Diving for some years. Frey played lead acoustic guitar and back up vocals for another famous Detroit Rocker, Bob Seager (Ann Arbor HS 1963) on his hit "Ramblin Man" before leaving Detroit for California. Frey never forgot his Michigan roots, especially his pride in Detroit.

None of us do.

Growing up in the 1970's, Detroit was the Home of Rock and Roll, and is to many still. Sorry Cleveland.

Glenn Frey met up with Don Henley, formed the Eagles and the rest is history. In fact, they have an Eagles history that won awards on Showtime. 

Of course there were excesses. We grew up in the 60's and 70's for gods sake! We had smoking areas in our High School, the drinking age was 18 and everyone smoked pot. Some did more.

Glenn Frey became a health nut, not unlike millions of other Baby Boomers. He ran, kept a healthy weight and mind.

Glenn Frey dead at age 67. What the Fuck? 

Now the scary part. He had painful arthritis like me and millions. Arthritis is the leading cause of disability in the United States, Canada and Great Britain. 

We are not talking another boomer exercise side effect, Osteoarthritis. This is "normal" wear and tear which causes pain, loss of cartilage and eventually replacement if possible.

There are 100 kinds of Arthritis. Chronic (meaning forever) pain and a host of other medical conditions come with arthritis. 

It's like having a monster inside you.

If the monster gets scary enough, you go to medication. Medication that very well may be effective, however, with deadly consequences.

Modern medicine gets your body to stop attacking it by using Chemo like drugs to lower you immune system. You may feel better or not. But these days, everybody is pitching these drugs for illnesses which doctors can't diagnose nor treat. The side effects can be something of a problem when you get other diseases caused by your medication and then can't fight off another.

Precisely what happened to my fellow Detroit-er, Glenn Frey. He got pneumonia and his immune system could not help him.

Trying to stop the agonizing pain, he took the medication with all the bells and whistles.

But these medications have nasty side effects. How many more people have to suffer, or take harmful medications before something gets done?

Why can't Americans agree and get stuff done instead of polarize and control? This has a lot more meaning to it when there are lives at stake.

Millions of lives.

Wake up America, there is more to building walls and prejudice. People are suffering. 

Now they are dying. That is not a Peaceful Easy Feeling is it?

Rest in peace my friend
Glenn Frey 

Friday, December 4, 2015

In another life, I was (fill in the blank) before Arthritis

Chronic pain, inflammation and 

wicked exhaustion is exasperating!

We all had another life before our diagnosis. Does a diagnosis of chronic pain, bone degeneration end ones life as you know it?

Maybe. But it doesn't have to be all bad. My "Another Life" is so far in the rear view mirror that it barely exists. Even my name is changed (I took my wife's family name). People look at photos of me in disbelief. Not because of my invisible disease, but they can't picture me as that person. 

I was a banker for 15 years in another life.

That's my point. You have more than one life to live. Things will always be changing, sometimes quickly, with chronic illness. I am going into my 3rd (or 4th?) winter with this fiery dragon storming around my joints and nerves. Already symptoms of Chilblains in my toes and fingertips. 

After my injury to my heal, healed, I was able to get back to the gym. My trainer is also a sports massage specialist. So I got a massage and went back to light training on the elliptical. I started training again once a week.

I started to feel better, sleep better and better to be around. Then I was struck with a bad flare Friday after Thanksgiving. Thank heavens for our therapist.
She helped us through the "pain".

The flare lasted a week.

Is my life different? Did I expect to retire like this? 

Studies at Yale have shown that longevity seems congruent with having many lives. People's ability to reinvent themselves creates a more fulfilled and happy longer life. Who doesn't want that?

I plan on having many "another life's" over my lifetime. I won't let one roadblock keep me from being the best husband, friend and neighbor. There's a lot of potential in your future as mine.

Carpe Diem. 

Life is short, live happy and smile often.

Keep Up the Good Fight!

Saturday, September 26, 2015

Go Ahead, Add Injury to Insult!

Like Roseanne Roseannadanna says,
It's Always Something!

In my daily battle with my form of  inflammatory arthritis, Chondrocalcinosis, or CPPD,
every day is a challenge to keep active. Let alone deal with any other additional physical issues that invariably is dealt to us by just going about your business. 

You try like hell, to get enough rest, take care of flares, and exercise when you can. My primary exercise is walking at the gym with core exercises and some strength training. When I can. Walking helps keep my hips and knees flexible and more pain free.

Sitting is like Monty Python's spoof of the Spanish Inquisition making some prisoners sit in a "comfy chair" as torture. Sitting is the enemy. (google it)

My wife and I recently move from one side of Wooster Square to Wooster Street, the heart of New Haven's Italian section. Moving is hard enough, but my wife is an expert packer due to her background as an engineer. 

At times I felt helpless watching. We had a tag sale and I stupidly carried something wrong and sprained my lower back. Something I have not done in years. Some rest and physical therapy. Moving day came and the only thing I could do was corral our three dogs and keep them from barking.

My wife was a saint and savior during this ordeal. 

Just two days into physical therapy, while taking the dogs out, a new door we installed swung and cut my heel, about a 2 inch gash. No stitches but a doctor's visit, who said stay off it for 5 days. 

Day 10: Is my heel ever going to heal? Fortunately, last Saturday I was able to bike to a bridge opening.

And I am able to hobble. And I went on a boat ride, that sent me into state of exhaustion for the next day. It was well worth it if you check out pics from our Urban Birding Blog.  

I also attended a wedding of dear friends, whose vows invoked the ebbs and flows of the tide, the tides brings in, and washes away the past. 

One must live in the moments, enjoy what you can, make of what you can do. The only way I can make it through these tough times is with my wife, and having a purpose.

So my advice, to even me, is to get up and move!
Life's too short to wait for it to change, take advantage of your positives, reduce the negatives, and get a good therapist.

Deep in your mind your repetitive thinking can blow your "cut" into a life changing event, or you can realize that it will heal. You will get back on that treadmill and start walking, just as I will.

Hope to see you soon at the gym soon...

Keep Up the Good Fight!

Tuesday, July 14, 2015

Living with Arthritis is like the Movie: "The Picture of Dorian Grey"

Mere Mortals Morph into real life 

Dr. Jekel and Mr Hydes

For any of us living with Arthritis, the chronic pain, stiffness and exhaustion can become overwhelming.
You have all these thoughts about what ifs or how am I going to do that. Your pain is always there, and there is no hope that it will go away. 

You manage your symptoms, flares and remissions. Some flares feel as if you will never (fill in the blank) again!

But slowly you do. Then anxiety and anticipation. When, where and how will it appear next. 

In the movie, "The Picture of Dorian Grey" a foolish young man wishes that he never ages like the portrait he was having done of himself. He was unaware that the cat statue he was standing next to had some Egyptian powers and granted his wish.

The man never aged, only the painting showed the true man's reflection. He hid the painting for fear that someone would see him as he was underneath his youthful appearance.

Arthritis can be like that Dorian Grey, looking like a young healthy person, never ageing or a care in the world. You see, in the movie, Dorian is really a repulsing disfigured creature as his portrait shows, but nobody sees until the end. (spoiler alert) .

Arthritis makes you like Dorian Grey. You may look fine, but underneath you have this fiery dragon racing all through your body. Every step, in fact sometimes every breath seems to have to be calculated. It can be overwhelming, tiring and down right depressing.

Nobody can see this torment or pain.

It's hard but you have to see through the pain by living each moment. How are you right now? Comfortable, cozy with the dog on your lap? Then you are dealing with your pain.

 Zippy, my rescue Blind Italian Greyhound

I am reading a book about Living Well with pain and illness, the mindful way to free yourself from suffering, by Vidyamala Burch of Breathworks. Yes, suffering. I read from so many of you on twitter #chroniclife #spoonie and google+ and empathize.

If you have read any other of my posts, you know I strongly believe in cognitive behavioral therapy, 
or aka, therapist! A therapist can give you other coping skills, understand when the whole world doesn't and basically keeps you from going bonkers in a world of pain and suffering.

With arthritis, most people see you as Dorian Grey (not perpetually young, just normal looking), but underneath, all sorts of badness made him hideous.

Pain sufferers are hideous on the inside, and that brings on additional anxiety knowing that no one can tell what pain you are experiencing.

Mindfulness will help you deal with the emotions that come with the pain. Not to torture yourself with why me's, to why not, it is a human condition and you have to deal with it with a rational aware mind.

I am not finished with the book, but there are a lots of explanations how the author got through the toughest of pain and suffering. I urge you to try the same techniques to try and live well with your form of arthritis and/or autoimmune disease.

So head out to the internet and get this movie, and see if you see some resemblances to living with your chronic life. Until then....

Keep Up the Good Fight!