Sometimes it's tough

Before this journey of dealing with RA started, I was pretty active. I loved rough housing with my kids. I enjoyed working out. The problem with RA is that you start to become afraid of the pain of doing the things that you love to do.

Keep up that fight to stay in motion.

I gained a bunch of weight, because I didn't want to hurt and working out just made everything hurt worse. It's a downward spiral. Finally, I started swimming laps with one of my boys. He's been fighting his own weight, since he was in second grade. I was shocked to find that he swims through the water like an eel... We're working our way up. Right now we're doing 10-12 laps in a 50 meter pool. Breast Stroke, Free Style, Back Stroke, etc.

Being in the water removes a lot of the strain from my joints and makes it a lot easier to want to exercise. Keep fighting for your motion.

Sorry I haven't been more prolific with writing... Still have to work to keep food on the table.

So few worthy of trust

It consistently amazes me that so few people are out there who are worthy of trust. 

One of the highest compliments that I ever pay is that "I can trust you." Just recently, I once again found that someone who I thought trustworthy, proved to have no integrity.

It's very disappointing.

Communication is Critical

Those of us who fight for motion, against RA, know how important a good relationship is with one's doctor. That being said, I just had a lesson in why this is important, which I wanted to share.

For the last couple months, my left leg seemed to be getting weaker and weaker. It hurt far worse than my right leg. Well, everyone "knows" that RA is typically bi-lateral, so what I was experiencing must be either neurological or something else, right? WRONG!

I ended up buying a cane and was starting to adjust to the fact that my ability to get around was going to be more limited. I've mentioned before that I've got a great doctor, so I figured I should go see him, just to make sure there was nothing that could be done to help what was happening.

He did the typical doctor things... pulling, poking, prodding, etc. When he was done, he said this isn't neurological. If it was, the whole leg would be involved, not just the joints. It also wasn't a blood clot or anything else he could identify, so that just left RA.

We talked about treatment options, the fact that I hate Prednisone, and how we could knock down this weird flare. He was going to prescribe a Medrol Dose Pack, but instead simply gave me the pills with a list of how many to take, when.

After a few days, it was like my legs were almost back to normal. The point being don't settle. Talk to your doctor and keep fighting for motion.

So Thankful

It's easy to think that you're alone out there. Fighting for motion against something as insidious as Autoimmune Rheumatoid Disease is as much mental is physical. It's very sad when families or friends don't understand or don't believe what someone is going through.

It's easy to go the other way as well, and blame everything on your disease. You see idiot Bureaucrats who are limiting people's access to the pain meds that are needed by so many, and you start to feat the pain...

I've been fighting chronic pain, in one sort or another, for more than 10 years. About 6 years ago, during my second round of disk pain, I started being fearful of the pain. What I didn't realize was that dealing with the severe pain that I was fighting against would be practice for a life long fight with RD. 

I believe that in its historical context, without any additions or subtractions that the Bible is truth. In Romans 8:28 it says that... "we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." So, if that's true and I believe it is, then dealing with RD is good for me for some reason. Things are not always what they seem, so I encourage you to look for the things to be thankful for. 

Accentuate the Positive

Over the last few weeks, I've noticed that my left ankle and knee have started becoming more and more weak. I've tried strengthening exercises. I've tried stretching but my left ankle is now pretty much constantly in pain. A burning sensation that is pretty much never goes away now.

I stand a lot for work, and often have to be on my feet when I travel. I don't know if anyone is actually reading this, but having to purchase my first cane was very difficult. Now, it's stylish and looks pretty cool...

It doesn't change that this was the last thing that I wanted to do. So, the question for anyone else out there, who is fighting for motion is this... Do you want to maintain your independence or not? If using a stick to get around does that, then suck it up and get yourself a cane. This is not about looking pretty, it's about making sure that you keep fighting.

Ar Power

Very Exciting stuff that Creaky Joints in partnership with the University of Alabama Birmingham is getting ready to commence a research study into the things that people with autoimmune rheumatoid disease, ( aka Rheumatoid Arthritis) experience.

We've had two Patient Governor session so far, and I've met with the Data Privacy group, to represent my technical knowledge in way which will help maintain patient privacy.

In September, we're meeting in New York. I'm very excited.

A Weasel??

I was just thinking of someone who I think of as a weasel. This is someone who backstabbed not just me but also one of the nicest guys you could ever meet... After almost 7 months in his current position, he was just counselled by my old company's HR department because of his immature leadership style. 

I'm digressing, though. Has anyone ever wondered why calling someone a weasel started? Thinking of the person I was referring to, it seems like an insult to the weasel...

Apparently, the fact that they are very stealthy animals makes them a bad omen in other cultures.

Getting back to the guy I was referring to, the sneaking around, the back biting, the passive agressive who wouldn't communicate with me but would make stuff up to others, I guess does qualify him for Weasel status.

What's really funny is that the current EVP, who he's aligned himself with so closely, that one wonders about their orientation, doesn't know something pretty important about him... During the same time that he was stabbing me in the back, he was sucking up to this EVP's predecessor, trying to get a Director position.

This former EVP, who I remain good friends with, told him that he wasn't qualified for the slot. So while Bill thinks this slimy character is the best thing since sliced bread, he doesn't know that he tried to stick it to him as well...

Oh well, weasels typically get their due. It's sad really.

This iceberg idea is so true. Very thankful for my friend Leigh who shared it on fb

Pain Management

We hear all the time about the evils of hydrocodone, Vicodin, what have you... To hear politicians describe it, this drug is the worst thing out there... The problem is that it's also what keeps many people suffering from chronic pain functional.

There's no doubt that people get addicted. I'm not arguing this. What I am saying is that doctors should be the ones who determine whether or not someone has access to this type of medication.

About 10 years ago now, I blew a disc in my lumbar spine. At the time, this drug was a Godsend. It kept me able to work. Thankfully, I then was helped by an epidural treatment which temporarily fixed the problem. Three years after that, it came back with a vengeance. A quack pain management doctor (Lasalle) in the Kansas City Metro tried something like 6 different epidural treatments and even an ablasion where they burned the nerves in my back. Nothing helped, except the hydrocodone that they gave me during treatments. I finally had a laminectomy, which corrected the problem.

Six months later I was diagnosed with sero positive Rheumatoid Arthritis. Again, I went through who knows how many drug treatments to attack the disease. Thankfully, we've prevented joint damage to date. However, there's never a time when I'm pain free. I'm always at between a 4-5 on the pain scale.

I'm thankful for a doctor who helps with my pain management by providing this drug. Without it, I would likely not be able to work. With it, I'm able to lead a team of software sales engineers for a major software company, in the call center industry.

Medical decisions should regulate the availability of this important drug. If someone abuses the drug, then obviously, they shouldn't have access to it. However, making it a political issue or reclassifying it so that the people who truly need it have a much harder time is simply wrong.

How Great Leaders Inspire Action

This is an outstanding Ted Talk that I would refer anyone to. Outstanding!

Simon Sinek - Leadership

Lidocaine Patches

Lately, I've been having a lot of pain in my ankles. I didn't want to take even more pain medicine, so in talking with my primary doctor, he recommended using these patches. The patches come as a 10cm x 14cm rectangle. I typically cut them into strips and put them across my ankles. 

It might not help for you, but they've been a blessing to me.

All the best today! Stay strong and never give up.
J

Fighting to stay active

In the last 5 and a half years, since I was diagnosed with RA, I've found it harder and harder to motivate myself to stay in shape. Frankly, I became so afraid of the pain that I wasn't willing to make the sacrifice of exercising... What made it worse is that before this journey began, I like being active. When I was in the Marines, we would run sometimes just because we were bored...

So how do you motivate yourself knowing that the sacrifice isn't just time? It's likely that your pain will increase. I would give almost anything to be able to run like that again... I'm not a psychologist or psychiatrist but it seems like the key to this type of motivation is wanting something / having a goal. The other thing that I have to continue to remind myself is that God wasn't surprised by my having RA. I firmly believe that having RA is the best thing for me, because I trust that the Lord is true to His word.

I've also read many things about exercising best practices and they always say to have an exercise buddy. I have two - my daughter Petra and my son Liam.

In most cases, Liam comes with me while Petra comes along when she can.

Most RA patients deal with morning stiffness. Mine tends to last between 45 and 90 minutes. So, I try to get started working early, at my job, so that I can use my lunch break for working out. I have been blessed to be able to work from home, so this is actually pretty easy.

So far we've been at this for about 6 weeks and thankfully we're seeing results. I was starting to push beyond wearing a 40 inch waist pant comfortably, but my middle is slowing deflating... 

I also read recently a study done in the UK regarding chronic fatigue, which is common with RA. I've added it below

It doesn't say whether regular exercise has either a positive or negative impact on chronic fatigue, but that would certainly be interesting data.

Be well, today! 

How Stupid Are People

Should we look at the constant scandals, foul ups, SNAFUs, etc from our Federal Government?

Let's just look at the "High Crimes and Misdemeanors" that the President is currently responsible for, let alone complicit with...
1. The VA Scandal - mid level / high-level bureaucrats cooked the books to make it look like they were seeing veterans in a timely manner, in order to receive bonuses. That's fraud. However, in addition to that it's now clear that people have died because of this fraud...
2. Bergdahl - Obama specifically decides to release 5 senior members of Al-Quida. OK, he had that authority, as long as he obeys the law... He didn't. The law in this case is specific. 30 day notification is required before the release of any detainee from Guantanamo. OK, they say it was urgent... Wait, apparently the negotiations took months... They say they couldn't tell Congress because if it leaked Bergdahl's life was in danger.... Wait, 80-90 people already knew about it during the negotiations... I know the definition of lying is watching a politician talk, but this is ridiculous.  
3. Negotiation with terrorists. They claim they didn't violate this standard that has been a benchmark of security, but regardless of the stupid excuses that they gave, they did negotiate with terrorists.
4. Asleep at the switch. Now after how many of our soliders, sailors and Marines have died in the War with Iraq, the country is about to be overrun by another terrorist organization. Caught completely flat footed, these people are incompetent at best and complicit at worst and the president should be impeached.

Exciting Research Going On

Creakyjoing.com, one of the most popular arthritis organizations on the Internet, is a part of the Global Healthy Living Foundation. GHLF has been awarded a PCORI contract to develop a PPRN or patient-powered research network as a part of the National Patient-Centered Clinical Research Network (PCORnet) working with the University of Alabama's Center for Education and Research.

What this means is that patient governors are being selected to help in the following ways:

• Advisor: through discussions on monthly conference calls, at the annual Patient Governor Group conference, and informally throughout the year, a Governing Member will serve as a sounding board for the GHLF/CreakyJoints staff and health researchers by representing the viewpoint of AR-PoWER patient/members specifically and individuals affected by inflammatory arthritis generally.

• Advocate: a Governing Member will serve as an advocate for the value of patient participation and leadership in rheumatology research.

• Ambassador: as an informed insider, a Governing Member will serve as an ambassador for AR-PoWER to other individuals affected by inflammatory arthritis, their caregivers, healthcare providers, and to the wider community.

• Research Collaborator: a Governing Member will work with fellow Governing Members, other patients, and with professional researchers to participate in one or more of the following research activities: outreach and recruitment, identify topics for research, set priorities for research, frame study questions, develop research protocols, implement research activities, review and interpret research results, and disseminate or implement research findings.

I've been honored as one of these Patient Governors, and am looking forward to writing here about this research project, as time goes by. 

Stress & RA

In dealing with my RA, it's helped a lot that it was caught early. I'm blessed with a doctor who loves solving problems. Since we have known one another for years, when I first when to him 5 years ago, he took my symptoms seriously. However, the thing which seems to have the most negative effect on how I feel is... If I allow stress to get the better of me, I spend days paying for it. That begs the obvious question of how do you prevent it from "getting the better" of you...? I wish I could say that that was something that I had mastered. I haven't. I do much better though when I've spent time reading God's Word and talking to Him in prayer. When I've been focused at work on the things that I can control so that they are not Out of Control. When I remember that in light of eternity, how important is something... There are many ways of attacking stress. I hope that you're looking at keeping things under control, rather than running around with your hair on fire.

Memorial Day

Yesterday was the day we remember our honored dead, those who've fallen to the service of our country. Far too often, please just view Memorial Day as a "3 day weekend." It's a day to hang out, away from work. Too many are still suffering from the loss of their loved ones. Too many have to wait for the care that they need.

I pray that we, as a society, practice what we preach. We're all "for the troops." How many of us, donate time or money or just the care and love that so many need. I've been praying for a good friend of mine who's been suffering mentally from the stress that he went through. Let's all stand up for our believes and really support the troops with actions, not words...