Wednesday, January 29, 2014

Rheumatoid Awareness Day

Rheumatoid Awareness Day is observed on February 2.  One goal of having our day is to overcome the misconception that rheumatoid disease is just a form of arthritis.  Rheumatoid Disease/Arthritis has often been confused with osteoarthritis. But joint pain and stiffness is only a part of RD. Throw in extreme fatigue, balance issues, brain fog as the disease is attacking our joints, eating up cartilage, and sometimes attacks vital organs. It causes severe pain, frequent disability, and increased mortality.  It's a challenging painful disease at best. Outwardly we appear healthy but the pain inside is very real to each and every one of us.  

While there is no cure, we do have several treatments but most provide little relief nor give us any long term hope.  We often hear "I have arthritis too" or "just excercise, you'll feel better". Perhaps one day there will be enough money for research that they will find a cure so future patients won't have to endure what we are going through.  For me, my plan is to  just live day to day.   I keep getting out of bed and go do the best that I can do every day.  Sure I make plans but they often get rearranged or even cancelled. 

I am on the verge of a epic ride coming up this summer.  Right now it is all hinging on my RA and I'm looking at a 50/50 shot of getting to go.  Stupid RA!  I will tell you more later, hopefully while announcing that I'm going.

Tuesday, January 21, 2014

DMARDs and Biologics

In the beginning, as most newly diagnosed RA patients do, I looked for alternative treatments.  I was afraid of the drugs and their side effects.  I tried so many natural/homeopathic treatments and diets, I can't remember all of them.  The only thing that happened was I continued to get worse.  I don't fault the newly diagnosed for thinking they are going to beat RA without going the standard DMARDS and biologics.  I applaud them for their enthusiasm and determination ... and they have my best wishes for success.  I even talked my rheumatologist into letting me try minocycline, an antibiotic that has been used with some degree of success for the treatment of RA. Unfortunately it also did not work for me.  Afterwards my rheumatologist told me that he didn't blame me for wanting to try the antibiotic but he felt like the people that it worked for were not in the moderate to severe category.  

I am through with alternative treatments now, have been for some time.  I know that if I am to have any type of life beyond sitting at a computer or watching tv on the couch, I am dependant on DMARDs and biologics.  I don't like it, I don't think about it, I just take them and go live life the best I am able to now.  Even with the drugs, I still hurt everyday.  They are not a miracle drug as the television commercials lead the general public to believe.  Even though I do not look sick outwardly, the pain I feel inside is very real.  I don't want your sympathy ... I don't want your pity.  What I do want is people to stop telling me what I need to try or what I can do to cure my RA, there is no cure.  It seems that I am becoming less tolerant of this after 10+ years.  I know people mean well, but I am doing okay.  If you want to talk about football or fishing thats fine by me ... trying to cure me is off limits.

After 5 weeks, I finally got over my sickness that has been dogging me since just after Thanksgiving.  Then the next week after feeling better, the arctic crud left our area and the past 2 weeks, I have put in 3 rides totaling 430 miles.  Nowhere cool, but it felt great after being off of my bike for so long.  I had to replace the low beam on my KLR and holy freaking cow!!  It took over 2 hours to ... let me back up first.  The headlight is buried in the upper front fairing and without a shop manual, it took over 2 hours to figure out how to pull the fairing off to get to the headlight.  I'm not dumb, I have worked on all of my bikes I used to race as well as trail ride.  This one thing thoroughly kicked my ass though.  I now know what it takes and could do the next bulb change in about 20-25 minutes.  Needless to say, I do not think like a Japanese engineer.  By the way ... I have a shop manual on it's way now.
Above Ozark lock and dam
Stairway down next to the bluffs at Arkansas River were 
not really made for size 12 Alpinestars riding boots. 
My first and most likely only selfie.  Was trying to find the zoom on my
new phone and flipped the camera to front mode ... figured why not.  
The old TB Hospital at Booneville.  In the 1930-40's it was the
largest and most advanced hospital for the treatment of TB.
Front entrance to the hospital.
Front entrance to the hospital.
Abandoned bridge on a ride yesterday.  Yep ... we rode across it.
Surprised they did not have barricades across both ends.

Thursday, January 2, 2014

Happy New Year

Happy New Year to everyone.  I am thankful for being granted the privilege of seeing another years birth.  I've got to lose some weight, not because of a new years resolution but because I stepped on the scales two days ago and said "holy crap!"  As someone who never really thought much about the future, I'm also someone who doesn't look back.  There have been several changes in my life over the past 15 years but none have impacted my life the way that RA has.  I always saw myself still being able to run, ride a bicycle and yes ... racing motorcycles in the super senior class at this age.  

I am looking forward to 2014 with great optimism.  For me, 2013 wasn't that good.  I was dealing with a very long flare up that lasted a good part of the year.  It impacted my work, household jobs and yes ... even riding.  The last 4 months of 2013 I did the best I could to make up for seat time on my bike but then I was sick the entire month of December.  This month long sick marathon was due partly to the mutated, nuclear strain of cold/sinus/ear infection I had, and partly due to my depleted immune system from the RA drugs I take.  I went off of my chemo and biologic while on antibiotics and soon my hands were swelling and hurting followed by my hips, knees and ankles.  I am back on my RA meds and with the exception of this pesky cough, completely over it.

I have been considering a set of medical dog tags to wear in case of emergency.  I know that riding a motorcycle in and outside of town, I am more at risk to be laying on the side of the road somewhere than most of you, but have any of you considered them, or have them?

I will leave you with some photos of a ride I did this past summer.  I stopped by a small lake a few miles from where I live.  I ride by and stop to relax every once in a while.  It is a peaceful lake that almost always has a nice breeze blowing across the water and plenty of empty benches to sit on.  
Spiro Lake

I have never seen this sign before ... on new, smooth pavement no less!
Use to race (enduro's) by one of these on Tinker AFB at OKC.