Wednesday, July 31, 2013

Three Good Days

As frustrated as I have been over the past couple of months about being kicked around by my RA, I have had three really good days off and one so-so day off this week.  I can't explain it but I don't really expect my good fortune to stay with me as I go back to work Wednesday night. 

While doing research on other RA drugs, I did run across some interesting data.  Below is an excerpt from one article I came across. 
"Despite the many biologics now available and the hope of more individualized therapy, half of U.S. patients with rheumatoid arthritis stopped these meds within 2 years. There seems to be a high rate of discontinuation that may be attributed to multiple factors -- lack of efficacy, adverse events, patient and physician preferences, and expectation bias." This data was collected in a study by Vibeke Strand, MD, of Stanford University in Stanford and presented at the annual meeting of the European League Against Rheumatism. She noted "this was a very rapid decay in the durability of therapy." 

In some cases, biologic drugs will work for a while and then become less effective. It’s not clear why this occurs. It's not uncommon to try more than one biologic before finding one that helps your RA significantly. Fortunately, there are several biologic drugs to choose from. If one doesn’t work, chances are good another will. According to the Arthritis Foundation, most people eventually find a biologic that helps them, although the degree of relief varies. Some people feel partial relief, while others go into remission and are symptom-free. While I would love to be in the "go into remission and be symptom free" I have cashed in all hope for reality on this. 

I mowed (we finally got some rain last week), went for two rides, cleaned up my music room and built a rifle cleaning cradle on my days off this week. We did a 160 mile ride down into the Ouachita National Forest and were met with several snakes, tons of deer (you hunters aren't doing a very good job) and one suicidal squirrel who lived to play his silly little game another day.  Felt great to feel like doing things again!
KCS railroad bridge in the Ouachita National Forest.
Old Poteau River bridge at Heavner, OK.
Old Huntington Jail built in 1888.
Rifle cleaning cradle I built with no plans for $5.
Oh, I almost forgot ... got to ride in and drive my daughters new Challenger RT.  It is the Hemi with the suspension upgrade and special wheel package.  Bottom line is the 384 hp was freakin' incredible.

Monday, July 22, 2013

Life Isn't Fair

Life isn't fair but it's still good.  I know not to waste my time or energy on something I can't control yet I still have days where I get caught up in the pain and fatigue.  I am starting to do some research on RA drugs so I won't talk to my rheumatologist about changing drugs completely blind on my upcoming visit.  Fatigue continues to hammer me, especially on work days.  I feel like I am going sideways with my current treatment, I just want to find a medicine that gets me back to feeling like doing things again.  Donna recently said, "I know you aren't feeling good ... you've not been riding much".

I got to spend the day with my daughter last Tuesday.  She has her own photography business and wanted to go with me to shoot a 110 year old iron truss bridge.  While I was shooting it from strictly an amateur angle, she sees and shoots things differently.  I have not seen her images yet, she has been busy editing shoots for money (those take priority over personal shoots).  We have been in extreme heat for a while so the thunderstorm that rolled in while we were there was very welcome.  

I did get out for a short ride yesterday and even though it was a paltry 80 miles, it felt so good.  I have said it before, riding is my therapy.  I don't know how those of you who don't ride cope.  I know we all have different releases but I feel so alive and free when riding.  I rode through the outer edge of a small town at sundown and rode up on three wiener dogs self absorbed playing together in the road.  I slowed to 15 mph as I approached them and was about 20 feet away when they saw me.  One dove to the left while the other two scampered right as quickly as their short little legs would carry them and watched me as I motored slowly by them.  Fun dogs as we have adopted Aprils (Donnas co-worker) dachshund Sonny.  What a live wire with a stubborn streak!  haha  Sonny is a champion tennis ball chaser, never seen a dog so crazy about tennis balls before. 

Sometimes its just the little things that help you through a tough time.  You just have to be smart enough to recognize them and not brush them off.  Hope everyone is having a fun summer.

Monday, July 8, 2013

Dog Days Of Summer

I want to ride today but just can't push myself to do it.  Chronic fatigue (along with RA) sucks.  I honestly can't remember what it was like to not hurt or to feel rested when you wake up. It must have been great though! I had an extremely rough week at work last week.  Twelve hours is a long shift when you don't have any problems, throw in feeling sick or living with what we have everyday and they can seem like an eternity.  My last work day last week I was hurting before I ever got out of bed and considered calling in FMLA.  I have had FMLA papers filled out for the last 7 years at work (I have only used it one day in 7 years) but chose to go on to work anyway.  Just the weight of the sheets, while laying in bed, was hurting my feet and I knew 12 hours on concrete in steel toe work boots was going to be brutal.  Throw on top of my feet hurting, my right shoulder, hands and hips ... I will be alright just as long as I don't have to climb the stairs tonight.  When I get to work, they started a new page in the continuing chapter of "look what we can make you do now".  Yep ... we now have to climb the stairs every fifth roll and take readings on the paper.  I was hurting so badly by 11pm that I seriously considered going home.  If it wasn't for needing the money I would have, but I pushed on while taking three Tylenol Arthritis.  The TA finally started working around 2am and I stuck it out but I could barely walk by 7am when the shift ended.  I went home, crawled in bed and slept til 5pm.  Donna is out of town for the week so I fed the animals, watched a movie and went back to bed and slept til 8am this morning.  I am feeling better today but I absolutely could not have made it if I would have had to work last night.

Donna found something that has proven very useful to me.  Putting my socks and shoes on is very painful for me and she brought something home for me to try.  When I looked at it, I immediately thought, "you just wasted your money on this stupid thing".  It is a sock aid and after using it for two weeks I have to admit it is priceless to me now.  If you have difficulty or pain putting socks on, you should look into this. It is a plastic half tube with straps on it, you stretch your sock over it, drop it on the floor holding the straps and pull it up onto your foot.  Once your foot is positioned in the tube, you pull it and it follows the contour of your heel and stretches the sock onto your foot and slides out as the sock is on.  Pretty cool, don't know if it would be worth it to any of you, just thought I would pass it on.

It is back up too the 100 degree mark and the temps (along with feeling like crap right now) have kept me from doing any good rides.  I recently learned of an abandoned bridge (my favorite) about 60 miles form my house so as soon as I get back on the bike, thats the first place I am headed.  It shouldn't be too hard to locate I think I have some pretty good directions but hunting them is part of the fun.  It will be rugged, from what I understand, the road no longer exists either so I my need to take the KTM out to look for it.  Should be cool though, an abandoned bridge over a large creek out in the middle of the woods.

On my last post I mentioned shooting a M-10.  Below is a photo of some of the guns we had out there.  Yes ... I may hang out with some scary friends but I know where I'm going when the Zombie Apocalypse happens!  Btw, they really aren't scary people, they were both in Iraq for a combined 13 years.