Life has many rivers to cross, Arthritis makes crossing tricky!

Convulsing Caustic Currents 

like Rivers of Fire in your Joints

Photo gif: Bart Connors Szczarba

Sounds like fun this arthritis. But it is not. Arthritis is the number one cause of disability in the United States and the UK. Having arthritis can make simple tasks like feel like you are walking waist deep in a river upstream. Every step calculated, every move and every effort.

Effort upon effort. And the cure? None in sight. In fact, Methotrexate has been around for over 30 years. I have read that only 50% of patients who try this, and move on to other biologics, have some relief. However, after two years half of those were off of it because it was ineffective in the long run. 

There's nothing you can take that is going to stop the burning, the swelling or the pain. You can't find anything that is going to give you back the energy that your arthritis has robbed from you. 

With every up, there's a down, every top, a bottom, every mountain has a valley... for every victory there are more failures.

Is it is all bad? No. You can put up a fight. You can take things to reduce swelling and ice. You can try to get on a regular exercise program. Try some meditation and by all means, get a therapist. They will be the only person that understands your pain. You would feel better if you talked to your doctor once a week to tell them what is going on. But, you and I both know that doctors come up scratching their heads when everything hurts and specific joints (my right wrist now loves to swell at night) puff up.

Doctors knee jerk reaction is prescribe and jab. Patients are desperate to get any relief. Having arthritis is always a battle that you face everyday, morning, noon, and night. A great big circle of flares and remission. 

If you are like me, you don't want to take everything and the kitchen sink. I don't want to risk my health down the road for some temporary relief now. 

However, if you have a more aggressive form of arthritis than my

CPPD

then you have to do what you have to do. Chondrocalcinosis is slower progressing tha Rheumatoid Arthritis, but arguably more painful, hence the nickname, pseudo gout. 

We are finally getting some decent weather here in Southern New England. The warmth feels much better on your joints. Don't let your arthritis take over the summer. Get out on your own and bike, walk, join the gym, hike or whatever your passion drives you. 

Exercise is tough, and can leave you feeling sapped of energy too. But that's ok, you sleep much better and have a better attitude also. I hope you, 

like me, can find that right magic balance of diet, exercise, mindfulness, and family and friends to make your life with arthritis as best as it can be. Until then...

Keep up the Good Fight!

Bart Connors Szczarba

When you least suspect, POW! An arthritis smackdown, FLARE!

Hard to keep moving 

when moving is treacherous! 

Wow. What a winter we are having here in New England. Here in the Elm City, New Haven Connecticut, we had the coldest February ever and the second snowiest. And we didn't have any snow on the ground when it started. We thought we were coasting this winter, never thinking that Old Man Winter was such a cold hearted bastard.

You see, Old Man Winter loves 

to make you sick of him. 

Mostly, I was coasting. Besides the bone chilling cold and my chilblains disease, I was feeling "good". I was getting to the gym, I was getting our place in order for a move, seeing a new doctor and taking some medications that actually helped, Cymbalta. I thought I was outrunning my CPPD and fibromyalgia,winning the battle and I had energy! 

Then WHAM!

Like Old Man Winter, my Arthritis showed up to breathe fire into my joints. No, not just to make me unbelievably stiff, no.  My Arthritis and fibro came to take every ounce of energy.  At night, I am awoken by an ache that won't stop.  Doesn't matter where, but my left knee shows the worse damage from chondrocalcinosis, the process that causes Calcium crystals to form and then your joints all get attacked. CPPD used to be called pseudo gout, so it is painful like gout, however, no diet can cure CPPD.

This process will happen to 50% of us when we reach 95.  I'm lucky because I go to get it when I was 54. Only 2% of people under 60 come down with the disease. There are over 100 types of arthritis, CPPD is damaging to the joints but not as steady or severe as RA. Only the future will tell.

There is no cure for arthritis, all 100. Yet arthritis is the number one problem that causes people to become disabled and not work. 

You know the best part?

Doctors don't have a clue, they just help you manage your symptoms. Most doctors try to push the biologics. For now, I will take a less aggressive approach. My new team of doctors are all in the same place, and talk to each other. Especially my Cardiologist. I had a hole in my heart since birth and I was only getting 75% of the oxygen that would be normal. 

I was lucky I never had a stroke or heart attack. So my Cardiologist is in with my Rheumy and Internal Docs.  For me, it is comforting that they all seem to care. Anyway, the ASD closure (hole) did not take, it did not completely plug the whole. And my last echocardiogram shows more leakage between chambers.

Well that sucks

For now, they will monitor. In the future the surgery may have to be done again. Oh boy.

Back to the flare, which mostly took on my energy and made my joints throb. For nine days I could not go to the gym, sleeping often; unable to shake the exhaustion.  My Internist has me going for a sleep study to rule out sleep apnea. Then we go from there.

The Cymbalta, my doctor said at first has a "honeymoon" effect. Where you feel better at first then you are back to reality. I still am happier with Cymbalta than I thought I'd be. My doctor said to up my Mobic, an anti inflammatory. 

Again, I started to go to the gym, but just 2 days.The next week I went Mon-Wed and then

BAM! POW! SPLAT!

Down again. and then the insult. I came down with what I assume is a cold. No energy and a cold means

I can't do much. And now I'm sporting a fever and have surrendered to the bed.

There is no doubt that my arthritis flares during the winter. My last doctor glibly said to move to a warmer climate. If only, then I would have a place to stay here in the summer and head to warmer climates with our migratory birds.

Game plan

Boy I had a great game plan 3 weeks ago.  Feeling better enough to get to the gym and starting to feel the positive effect. But then 9 days of trying to cope with the pain, takes up a lot of time. But you perseveres, what is the alternative?

So my game plan is this: Listen to my body and give it what it needs. Starting with getting rid of this bug.

Then getting back to the gym and keep on keepin on.

You can't sweat about your disease. If you are like me, it can bring on guilt, anxiety and depression. And your best defense is exercise.  My daily goal is 15,000 steps. One of the main reasons I moved to New Haven was its walkability. And it's a great biking town. What's your game plan for flares?

Keep moving

and 

Keep up the good fiight 

Bart Connors Szczarba

Winter and Arthritis makes for one scary roller coaster ride!

Frigid, Cold, Freezing, Icy, Dangerous Conditions
adds to an already challenging routine.

Routine:  Common placed tasks, chores, or duties as must be done regularly, or at specified intervals; typical or everyday activity.

Sounds a lot like life, as it comes to you daily. And then you do the things that need to get done, in spite

of all the obstacles and distractions that life throws at you.

Then throw in another burden

You have arthritis, or some other debilitating, 

inflammation producing, sleep disrupter.

Tiny Tufted Titmouse takes leap of faith

Easy as one, two, three

My wife says I do better with routine. And I would have to say yes, when you get a good, painless

routine going it is nice to stay in that grove. Because uncertainty, for some, brings anxiety, which can cause stress. If you are like me, stress can be the fuse that lights a flare and stress keeps it fueled.

My arthritis, CPPD, is known to attack after you have an illness. I guess just to add insult to injury. Or just flare up for no freakin reason.  

So what do you do? I give it a three pronged attack.

1. Try to find a good routine that challenges you (you have to exercise), that is fulfilling, enriching and makes you feel good. Good about how you're managing and being a good spouse, friend, mother, father ad infinitum. Who doesn't want a happy life and family?

2. Barriers. Barriers are things that get in the way of routine. Not unlike this week in New England. I was trying to re-establish a consistent gym routine. Then we had a blizzard. Its hard to walk to the gym which was closed anyway. 

Hawk Hiding in Storm.

These types of barriers happen every day and vary in importance. Like, your dog pooped in the house or a log on fire rolled out of your fireplace.  You see, everything is relative. 

Attempting to foresee any barriers before they occur can also help. Less surprise = less stress. We can never get rid of barriers in our life, we just need to learn to enjoy life despite them. 

3. Action and reaction. When confronted with these barriers, we can control our reaction to them, helping to reduce stress. In addition, you can have an action plan. Like this morning for example. We had another 6-8 inches with sleet and supposed icing up to a half inch on top. Ah, winter in New England.  This on top of our "Blizzard" that dumped 8 1/2 inches last week.

Blizzard covered Cherry Trees

Sounds like we're in a weather pattern, which is a lot like routine. And my action plan? I broke my Sunday's off of gym work, and went for a good exercise. Then I stretched for 20 minutes, coaxing aching joints to release arthritis's painful grip. 

So this morning I knew that I could take some extra time for myself. Get out of my wife's hair and just relax. I read the Sunday paper as yesterday's Super Bowl events had me doing my chores getting the place ready for the big game. I also made my famous Sausage Sunday Sauce, a spicy dish with the best Italian sausage (sweet and hot) made with a Sunday sauce to die for.

My point is, that to live our lives with these chronic illnesses, you need that three pronged attack. Routine, dealing with barriers and your reaction and actions. 

I find sticking to a routine a terribly frustrating journey. So I try to work my routines around these obstacles that I have tried to foresee. 

I know that in order to have the best quality of life with a chronic disease is to take charge, lessen your exposure to stress and try to go with the flow!

Keep up the Good Fight!

Bart Connors Szczarba

New Year, New Hope, New You!

How to cope with the cold, post holiday stress and daily activities*

*I have not a clue. No idea. There's no handbook, no coach, no social worker, and certainly no doctor that can tell you how to deal with winter and your autoimmune disorder. My form of arthritis, CPPD, deposits calcium crystals in all my joints in my body.

CPPD used to be called pseudogout. Mainly because crystals form like gout, but those are uric acid crystals. And like gout, it is extremely painful at times, making my joints stiffer with any amount of sitting. 

I don't know about you, but it is exhausting to be constantly battling these demons possessing your body. All the while, trying to get the things that need to get done in life. Cleaning up after the holidays can be especially challenging to those of us hampered by these painful forms of arthritis. 

But we push on, we persevere. What is the alternative? This is the third winter I have faced with this painful chronic arthritis. My doctor sent up all these warnings that I have to get on this medication or that, otherwise I will pay in my ability to move and damage to my joints. 

I have chosen not to take methotrexate, or any other biologics. In fact, if I had started when he recommended, I would have felt better. Because I did feel better this summer with the warmth and my regimen against this tough opponent.  Better is of course relative, and there were some tough times.

But I was able to travel, bike and exercise fairly regularly. 

Ah but then came the fall winds, then the cold air slipped in, chilling my toes and hands. I have chilblains disease, which is an offshoot of Raynauds Syndrome. The blood doesn't get to your extremities making my finger tips cold. But my poor toes show the effects of chilblains. Blisters form because when the toes do warm, the blood rushes back, bursting blood vessels on the way. 

Oh how I love winter.

So what do we do? Especially when there is bone chilling cold to go along with your exercise plan, plus all the other daily crap. 

New year, New Hope, New Doctors

I don't know anyone that likes to go to doctors, and your rheumatologist may be your best friend, or excruciatingly frustrating. If you are like me, you seem to think they are guessing and throwing the latest medications at you. 

So I did it, I left my doctor in search of one that was close, but in the same Yale Medical group. So when the 30 day head and chest cold just kept staying I went to Dr. V. in New Haven. 

First off, he got rid of my cold. I got antibiotics and by the time I was done with the regimen, the cold was gone. Being healthy is important when you have a chronic pain disease. But then he turned focus on my "allergies". Dr V took me off my claritan and now I use nasonex. 

Poof, gone. When my arthritis flares, it is usually accompanied by bad allergy type symptoms. Believe me, any improvement is one thing off your plate!

Then he switched my Celexa for Cymbalta. Take it in the morning he said. I was really flaring so I thought I'd give it a try. I won't take anything that makes me tired and then try to go to the gym. 

Nothing. No real side effects. For me, it makes me feel a little you've had a bunch of coffee, but other than that I have no reaction to it but the positive effect.

About 2 weeks into taking Cymbalta, my joints stopped flaring. I got more energy and felt like I get more restful sleep. And Dr V. wants to wait to see what I do on this regimen, before the next steps.

So far so good!

I hope that this New Year, if you battle a chronic auto immune disease, you can find some peace and relief.

Sometimes, you just have to break of out what was not working and say, What the &*#@!

Happy New Year

and 

Keep up the good fight!

Bart Connors Szczarba

Do You have a gut feeling about your Arthritis?

Could your stomach be the cause of Arthritis and other autoimmune diseases?

If you are like me, you are always searching for some way to control your (fill in your particular auto- immune chronic disease). For me, I use Feedly (google it), to keep me up to date about arthritis, CPPD, RA, and other types of arthritis and their treatments. If you plug in what you want to follow, you can get many articles a day about arthritis, and the different treatments and options.

My Rheumatologist told me I could not exercise my way out of my CPPD and Fibromyalgia. But from what I have read, we need to do 30 minutes of aerobic exercise a day, 6 days a week. 

Up until about October, I could do that. And other strength training. But when the cold set in, my joints became stiffer and stiffer. I exercise one day, then the next I have trouble moving. My ankles, feet and ankles are red swollen and painful. My toes are especially troublesome. I have Chilblains disease, an offset of Raynauds disease. The poor little toes are numb, very red with a telltale blister forming on the top on one of them. 

That kind of makes it hard to exercise. And when I do exercise, I don't recover easily or not at all. 

Frustration, Fear, Anxiety are all a part of the disease. But we can't stop. We can't give up.

Some days are good, some are horrible. I came across an article on Arthritis on about.com

The writer, Carol Eustice, wrote: 

 6 Things People Without Arthritis May Not Understand

Click here to read the article

Carol really hits the nail on the head on the first thing about arthritis that people don't understand. She says:

 "Fatigue associated with arthritis is an overwhelming depletion of energy that strikes at unexpected times and often after a night's sleep. The body feels completely spent, or as if flattened by a truck, and there seemingly isn't any amount of rest that will turn it around quickly."

No Shurt Shitlock!

She goes on to say that the fatigue at times is worse that the pain. I can attest to that. And the waking up feeling like you did not rest. Your energy level is 

ZERO. I hate those days. We can only manage our response to those energy-less days. 

That is difficult. Chronic painful diseases are hard to get a grasp on. That is why I write. 

Understanding that you are fine one minute, the next you are flaring like a storm, is very difficult for anyone to understand. The pain and fatigue are overwhelming at times.  

There are things to do, to be done, places to go. My disease makes looking forward to anything not a pleasant thing. I worry what I can do that day. And if you are with a bunch of people, its hard to keep up.

You can feel a bit trapped. People don't understand, and you can't communicate something you don't understand. Most doctors don't understand. 

"Hey, your moving, walking and biking."

Yes Dr, but its not the same, and I don't think any Rheumy know how to manage any patients lives.

They just want to give you pharmaceuticals, steroids

and maybe pain killers. I am looking for a new doctor who will work with me, not against me. I have a friend who is a cancer specialist and told me flat out not to take those biologics unless I had to crawl to his office. 

At 55, I am not taking that risk. I am just trying to manage each day as it is presented. I'm not getting stuck with needles unless I can't move my hips, wrists, ankles, shoulders, back and ad infinitum.

So what about the "gut" theory? I have another doctor who's clients are from rock stars to tv and movie stars in LA. He told me that its all in the food you eat. Of course, we who have these awful diseases know what we should eat and not. He says an 80% chance of getting rid of your disease. 

I love the guy, but if that were the case, there would be people cured and doctors all touting this. I eat well, all natural and no processed foods.

I can't say that he is wrong. But I just haven't seen or heard of people being cured of painful arthritis

by what they put in their stomach.

I wish there was a manual that come with painful inflammatory arthritis, but there is not.

So we make our own way. Some of us write, some give useful tips. Some talk about how they make it through each day. As a photographer, and Blogger,

I give myself an out, something that I can create

and others can enjoy. 

I hope if you have Inflammatory arthritis, that you can find a way to manage your disease, but find a way to have a life too. Thanks for reading and 

Keep up the good fight!

Treading Life with Arthritis, is like Treading Water

The Tiring Tread of your life

One of the most difficult things to deal with my type of Inflammatory arthritis is the constant pain. Not those nasty bone aching flares, but the unbelievable stiffness one faces on a day to day basis. 

Is this pain worse that a flare? Sometimes yes, sometimes no. But is is omnipresent. Like stifling heat or bitter cold. 

Is it going to kill me? No.

Is it difficult to function. Yes

I saw my doctor who says I am doing better this summer than last. I was on 30 mg of prednisone. 

But that was to keep my body from flaring. There is no cure for arthritis. It's kind of like, every (wo)man for themselves.

The pain persists, dealing with it is your choice.

How Long Can You Tread Water?

I say life with arthritis is a lot like treading water. Some people look at you and there is not a thing wrong with you. They do not know that your legs are pumping trying to keep your head above water, functioning on the surface as best you can.

Take the average person. 

Ask them how long they can tread water. 

One minute? 

Ten? 

An hour?

24 Hours?

You see, for those who can swim, treading water comes as natural as your mother's love. It's easy

and fun, unless your boat just sank and you are in the middle of the ocean.

Then treading water isn't as easy and isn't that much fun. In fact, you are trying to stay afloat until you can rest or be rescued.

With arthritis this daily pain is like constantly having to tread water. It gets harder. You get some rest, go tread some more. That's why it's so hard to fight this balance of living life while not getting so tired you crash and burn. Also, stress and anxiety are weights on your belt that makes treading water even that much harder. 

How do I cope? Cognitive behavioral therapy is first in order. And under Obamacare, it is now one of those things that are covered mandatory. You don't just get over a chronic medical illness. You need help. Otherwise you will drive yourself our your significant other crazy. 

Next I exercise. Or should I say, first I exercise. After about an hour or two in the morning, I am about as un-stiff as I get. I can walk to the gym which is a ten minute warm up. Then I either walk on an incline for over 30 minutes or 40 minutes on the eliptical. I then do some strength training. Other days, weather permitting, I bike from 15 to 20 miles. One day a week I work out with my trainer. Ouch.

All this is physical therapy for your mind as well as your body. The latest arthritis information says to exercise vigorously for 30 minutes 6 days a week to help lessen the symptoms and reduce flares.
Exercise helps you maintain a healthy weight. It helps you sleep and makes you look and feel better.

I know it's hard. This summer has been difficult to keep up the exercise on a consistent basis. But I just persevere to keep moving. I have found that less exercise in not better, after listening to my Doctor tell me "you can't exercise your way out of this disease." I backed off, I was frightened about aggravating the disease instead of trying to stay one step ahead of my (fill in your auto immune disease here). I feel better this summer with more exercise and I am off steroids (for now).

The last important coping mechanisms are medication and rest. Whatever medication you are on, you take what you have to with these diseases. 

I choose to take as little as possible. But I do take Mobic and Tramadol for pain. And I take a muscle relaxer at bedtime. If I have worked out, I sleep like a baby. 

Routine helps you live your life treading water. Hectic days can pull you under the surface. So rest is very important. Even if you are on vacation, don't burn yourself out trying to keep up. It's ok. Try to stick to a routine as much as possible and don't beat yourself up if you need time to rest.

I am going to head into this fall with an attitude of acceptance. Things are harder, especially when it gets colder. 

Treading the water of life is difficult while trying to live it... just try to keep moving and

Keep Up the Good Fight!

   Bart Connors Szczarba  

Remission Submission Mission

Remission? Is it Possible With Your Arthritis? What exactly is REMISSION?

In my searches for answers to my form of Arthritis, 

CPPD, I have read many articles from wonderfully normal people slammed with these debilitating diseases. I find comfort that there are as many people with more questions than there are answers.

Why is that?

For one, you are given a diagnosis and sent out the door with a prescription. I never took the methatrexate train, and I hope I never have too. I am fighting tooth and nail with exercise, cognitive behavioral therapy (everybody should have a therapist), and hopefully a positive attitude.

My doctor asked why I didn't take one of the latest pills... some huge sulfur pills. I debated and read and said no, at age 55 I am not ready to throwing more crap in my body than I have to. 

For some I know, that is not an option. My thoughts are with you.

This week there was big news in the arthritis world!

30 minutes of aerobics a day, 5 days a week can slow the progression of many forms of arthritis. 

That sounds a lot better than taking pills that can kill you later down the road. Something to think about.

But what about Remission?

If you look up the word in the dictionary, you will have to go all the way down to the 5th definition to find how it fits into the medical field...

5.Medicine/Medical .

a.

a temporary or permanent decrease or subsidence of manifestations of a disease.

b.

a period during which such a decrease or subsidence occurs: The patient's leukemia was in remission.

Aha. But how could a doctor or a patient know when a patient is in remission, except in the case of detectable diseases such as cancer in definition b. 

How can I go from pain to remission, from temporary to permanent decrease or subsidence of manifistations of the disease?

That my friend, is why we write these blogs. Because nobody knows. We have hopes, dreams and futures.

We want to be free of pain, stiffness, and know that in some way you could get better.

Summer sans bummer

Happy Birthday Wrigley Field!

Summer, my doctor says, is my friend. I will feel better and I do. I am off prednisone for a few months and feel better. Energy levels are more predictable, less emotional stress. Bright sunny days and bike rides. 

Is this a light at the end of the tunnel? Did my body just decide to give me a break for a couple of months? Am I going to start to feel "normal"?

Who knows.

But for now I am grateful and appreciate the days where I can and do say I feel better.

But summer is half over...

I will leave the worries of the winter and cold in a special place that I cannot find. 

I will continue to be active (30 mins/ 5 days a week!)

and I will just "be".

Mindfulness makes me more myself, not a prisoner of the what ifs.

The Romans had it right all along.

Carpe Diem.

Be yourself's best friend and as always

Keep up the Good Fight!

Bart Connors Szczarba