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!