Tuesday, October 7, 2014

RA Tip#37

After being on RA meds for close to 11 years now, I have the routine down pretty well ... or do I? This past Wednesday was shot day, I give myself an injection of humira every other Wednesday. I have always iced my leg down to numb it before the injection at the suggestion of my rheumatologist. I take the shot out of the fridge and let it warm up for about 10 minutes before injecting it. I was preparing my lunches for my work week, baking chicken and cooking vegetables and forgot about it. The shot had been on the counter for close to 25 minutes now when I remembered it. I didn't want to let it sit out for another 5 minutes while numbing my injection site and besides with it warmed up this much the humira would be warmer and probably offset not numbing my leg. I wash my hands and clean the injection site with an alcohol pad. Now remember, I have never not numbed my leg for the injection but ... I'm not scared. At the exact moment the liquid entered my leg, my leg felt the same temperature as it is 30 feet off of the surface of the sun! I considered yanking the needle out of my leg but knew I needed to just man up and ride it out. I pulled the needle out of my leg as soon as it was all in and let out a string of cuss words that would make a sailor jam his fingers in his ears and say "lah lah lah lah lah". In closing I would like to say that I will ALWAYS numb my injection site from that day forward. Just remember, I do stupid stuff and write about it so you don't have to.

About 100 miles into my ride Sunday afternoon, I was riding a patch of asphalt and passed a guy on the shoulder of the road. I slowed and turned around to check on him. I pulled up behind him and asked if he needed gas or help. He smiled real big and said thanks, he just stopped to stretch his legs. We started talking and turns out he was from Tulsa and knew some people I use to race with from over there. Super nice guy, we must have talked 25 minutes or more on the shoulder of the road. Oh. almost forgot the best part, he was riding a black Moto Guzzi V7. Ultra cool retro bike. Face it ... people that ride are just way cooler!

Wednesday, October 1, 2014

What Is Wrong With People

Having an invisible illness, as in my case RA, has it's advantages and disadvantages. One of the disadvantages is that no one sees you as really being sick. It happened to me at work again last week, a co-worker told me they wish they had what I had, they would get on disability and quit work. They went on to say that it looks like what I have isn't too bad! I push myself hard to continue enjoying life. They don't know that I hurt every damn day, that my feet feel like they've been hit with a sledgehammer most days, they don't know what it's like to have pain wake you in the middle of the night and not be able go back to sleep, many nights just the weight of the sheet on my feet hurts them, they have never felt your joints feel like they're on fire during an intense flare. A perfectly healthy person willing to trade their good health in so they could sit on their no good, lazy ass and get a check for doing nothing! I'm really not an angry person, I have developed a adverse reaction to stupidity.

I had three days off this week and was fully flared up in both shoulders. Monday morning I couldn't lift my left arm over waist high. After doing nothing Monday and Tuesday, I have good range of motion in both shoulders this morning. I want to ride today so bad but the responsible part of me says no, you have to go back to work tomorrow. I hate it when responsible me makes sense! 

I have had the forest maps out and between them and google maps I located another iron truss bridge to go shoot and an abandoned schoolhouse from 1905 to go visit. Taking down time isn't always a bad thing.

I have also been reading about the restyled Suzuki V-Strom 650 and have to admit I'm interested. I wish it had a 21" front tire but I still want to look at and throw a leg over one.

Tuesday, September 16, 2014

RA Strikes Back

We had a cold front blow in cooler temps and thunderstorms last Friday. I have been in agony ever since, affecting my hands, fingers, wrists and elbows. My jackass friend RA has laughed at the Tylenol Arthritis and Aleve that I have taken in hopes of settling him down a notch or two. And if that weren't enough he has been playing hide and seek with me. You know ... you go to bed with one hand hurting worse and when you wake up ... TADA!  The other hand is now taking center stage in the rheumatic S&M freak show! 

Then, on top of the pain, fatigue has just hammered me! I have slept a little over 24 hours over the past 2 nights. On average, I will get 22-23 hours for 3 normal nights sleep. I am hoping that I'm nearing the end of this unruly flare up but we have more storms and temperature changes scheduled to roll in Thursday through Saturday of this week. Holy cow, I don't have time for this stuff ... I have a life to live!

I had a nice ride planned for today. I was supposed to ride down south 120 miles to hunt and photograph an abandoned iron truss bridge sitting by itself in a field. That will have to wait til next week now. I do have new stuff coming for my bike preparing for my upcoming week off in October.

The photos below are of my cousin/18 year old road racer. Awesome kid!

Sunday, September 7, 2014

Take That RA!

Wow ... so much has happened since my last post. I didn't intentionally ignore my blog, it just sorta happened!  I have had a rough year with my RA. After going gluten free some 4 weeks ago I have noticed a pretty dramatic change. While my pain has only reduced slightly, I have so much more energy and actually feel like doing things now. I had a rheumatologist appt last week and he was equally excited about it. We were going to switch meds but after seeing that I was doing better decided against it, as did I.

I have felt the best I've felt in a year right now and I'm taking full advantage of it. I have been riding several times plus finishing up with a few more things on my bike. I have a set of Oxford Heated Grips and a Touratech Headlight Guard laying on my work bench. Also a lower dash kit and 12 volt plug are next up to be ordered with an Alumiracks rear rack. 

I woke up at the crack of 8 this morning to cool temps for this time of year in Oklahoma. It was 68 as I fired my bike up and pointed northeast. I met up with Greg on the way out of town and we rode out to the Ozark National Forest. We stopped at Oark for breakfast and then rode further into the forest only to discover the swinging bridge over the Mulberry River had been destroyed. I loved walking it and hope it will be rebuilt. We rode some more good dirt before popping back out to asphalt and the ride back home. Rode 195 miles today and I feel great ... take that RA!

Abandoned church house we found last week.
Abandoned church house we found last week.
Resting the bikes on the Mulberry River bridge.

What is left of the swinging bridge at Oark.
Greg strapping on his helmet after breakfast at Oark.

Tuesday, August 12, 2014

Good News

I had two spider bites on my eyelid, it was not shingles after all. I was just going off of how I felt the previous time I had shingles (in the exact location the bites are). The bites itched, were painful to touch, I had a low grade headache Sunday and my eyelid was swollen like with the shingles so I just assumed the worst.  Not sure where I got the bites, we have our house sprayed 4 times a year and it is extremely rare to see a spider (or any bug other than a fly) in the house.

I lied on my previous post ... I forgot that I got out early one morning. Two weeks ago I did a short solo ride and wound up riding part of an abandoned highway that has now been bypassed. I was surprised to find all of the road signs still in place despite huge boulders on each end of the road denying access to it. On the south end I just squeezed my bike between the large rocks and as I approached the north end I thought I might have to turn around. The wide part of my bike was just above the top of the boulders but if I did not have folding footpegs, I would not have made it in between them. It was nice seeing nature reclaiming the road and covering the signs up but I figured I had better move on, I met an elderly man walking on the road, and as I approached him running all of 20mph, I waved and said hello. He said nothing and gave me a dirty look so I thought he might be calling the law on me for being on "his" road. lol I was doing nothing wrong, wasn't tearing anything, up just riding slowly and taking some photos but I just don't trust someone who can't smile back after speaking to them ... then again, some people just don't like motorcycles. Can't we just all get along?

Sunday, August 10, 2014

Shingles Part Two

Six years ago I started this blog on living with RA as well as some ride reports. It was going to be worth it if I could inspire just one person to continue to do what they enjoy despite living with a chronic disease. In an unexpected twist it is I who has been inspired and touched by so many I have talked with and who have left comments and sent emails. I also recently turned over 100,000 visits to my blog ... a milestone I never expected to see since I don't promote or push my blog. Thank you to all of my followers and guests.

I have been enjoying the benefits of feeling better since my last post. Three weeks ago I started my second attempt at going gluten free and am doing much better with it this time around. While I can honestly say that my pain level has only been reduced slightly (any relief is good) I am amazed at how much more energy I have now. While my fatigue has not been completely erased, it is wonderful to feel like doing things again! In addition to having more energy, I have lost nine pounds in eighteen days. I wished everyone could experience how much better I feel. I am now questioning whether I should go on with the switch in meds or stay with the Humira a little longer. 

On the down side ... shingles again. This is my second bout with them and they are quite painful. Not to mention I have them on my left eyebrow so I have to go see an opthalmologist to make sure they do not spread into me eye. Impatiently waiting on these miserable things to be gone!

I got the Lexx exhaust installed on my bike and after a few rides am really liking it. It has a deep thump, not annoying loud like my 09 with the FMF Powercore was. I ordered the Trail Saver Quiet Core that Lexx offers and it does quiten it down about 4-5 more dbs. I took it back out for now because the stock exhaust with the spark arrestor insert is perfect for my taste.

I have not been on any rides with the exception of riding to work. I do have several good rides planned and if I continue to feel good this fall, I want to do a Oklahoma, Texas, New Mexico loop I found. Several old bridges and lots of windmills (old style) on the route. Also have a ride down to the Oklahoma/Texas border shooting some old bridges laid out. Now if my RA will just cooperate for a little while.
Black Kettle National Grassland in Oklahoma

Wednesday, July 23, 2014

Bad To Good In Half-a-Day

It has been rough since I last posted. I haven't felt like riding or even working on my bike in 4 weeks now and this past Saturday I was hurting bad enough that I called in FMLA (first day this year). I went to work the next day, my last work day for my week, and began feeling better mid-afternoon. 

Monday I had a list a mile long to get started on ... if I could just get two or three items crossed off I would feel good. It was one of those days where things just fell into place and combined with feeling good for a change, I got most of the list crossed off plus pulling the tank and seat on my bike and wiring up new driving lights. I followed that up by a quick trip to my GP to get a new prescription Tuesday morning then I came home and mowed and trimmed our three acre hacienda. after that, I cleaned up and went to take some tests at work that I was behind on. I can't explain why I'm suddenly feeling better so quickly ... I am just enjoying it for the moment. 

Cool note: Phil, one of my followers here bought a KLR and is loving riding again. 
Uncool note: Phil is also struggling right now with his RA and rides one day at a time like me.

I did take my bike out for a quick 40 mile ride Monday with the new lights. To quote a riding buddy who also lives with a chronic illness, "it feels good to feel good for a change." I have a new exhaust ordered that should be here Thursday. That will be the last big item I need for my new bike. The only other thing I need is for the Cimzia to work well when I switch meds!
New lights I put on Monday

Monday, July 14, 2014

Patiently Waiting Is Killing Me

It has been four weeks since I have felt up to riding and this week is no different.  After doing some research and talking with a few people who have used Cimzia, I am prepared to start it in seven weeks. I usually dread any med changes but feel if it doesn't work, it won't be any worse than where I am right now. I'd like to thank Andrew at Living With Rheumatoid Arthritis for his posts and helpful information on Cimzia.

In addition to feeling major league fatigue, you know the kind where you wake up from 8 hours of sleep every bit as tired as when you went to bed the night before, I got overheated at work Saturday. The door at the front of the press has been broken for three weeks and the heat from the warehouse just comes right in on where we work at the front of one of the presses. It has been hot but Saturday the temperature hit 101, not sure what the heat index was. I thought it was just me but toward the end of the shift Sean, who works the front of the press with me, told me that the heat had got to him as well. 

I have spent the day inside today researching some old abandoned iron truss bridges to ride to and shoot this fall once I start feeling better. One will be a stretch (for me) to ride in one day but I will try to get Randall and/or Greg to go with me. I found another one that was washed downstream and is supposedly still sitting in the creek bed.

btw, I may force myself to get out and do a short ride Wednesday before I start back to work Thursday.