Monday, April 17, 2017

Full Frame Cometh

I'm doing ok with the switch to Cimzia. Not great ... just ok. I have been having up and down weeks with all of the spring storms coming through Oklahoma. What I'm dreading is the start of mowing season. Our yard is three acres with a lot of trees and fence to weed eat around. I have put this off about as long as I can.

I have still not sold my last bike yet. I am riding it around the block every couple of weeks to keep it up. I am in the process of buying a full frame Nikon for milky way season this year. I have been shooting a lot of lightning over the past month. I am feeling pretty good about lightning now, having several good shots with each storm that passes over us. In the past, I had shot  ... maybe five good shots all of my life. I am shooting 5-10 keepers with every storm now. I'm loving getting back into photography as a distraction.

Monday, March 20, 2017

Just A Puppet

I fought hard the first 12 years after being diagnosed. Back up ... I was lucky the first 12 years after being diagnosed. The last 3 years has been pretty brutal on me.
At diagnosis, after being reduced to just barely being able to walk, the drugs took over and did a remarkable job of battling my immune system and awarded me with many extra years of active life. I would read how others struggled with this disease, diagnosed around the same time to even after I was and were not able to do much if any. I, despite living with this disease, didn't get it! I know that everyone is different and what works for one may not work for the next person. I'm not talking about that. I'm talking about being faced with the fact that whatever med you try ... nothing really works any more. I am just now coming to realize how fortunate I have been the first 12 years or so after diagnosis. I rode hardcore off road for about 4 years before that got to be too painful. I then switched to dual sport riding which is a mix of hardcore off road and dirt roads. I rode that for the next 3-4 years before having to go to adventure riding. I wouldn't have enjoyed this style of riding 15 years ago, especially if I had remained healthy, but it's been a lot of fun. But that too has slipped away from me. Change ... that's what we do to keep enjoying ourselves living with this disease. The cold hard fact is that after 15 years, I'm merely a puppet to this disease. It is calling the shots now but I'm still enjoying the good days that it gives me.
RA was killing me Sunday morning but I drug myself out of bed to go see the sunrise anyway. I went out to a site that I had scouted on the Arkansas River for a sunrise. Nothing like having anglers (the guys that get up in the middle of the night to put a boat in the water) look at you like you're crazy for dragging a camera and tripod out of your truck in the middle of the night. Then using a flashlight to walk down on the bank of the river!
I will leave you with a few photos that I have shot over the past couple of weeks.


Wednesday, February 22, 2017

Photographs From the Edge

We are looked down on in todays society. I actually had a guy say to me once, "oh, that's what is wrong with you". We work hard to maintain an outward normal appearance only to be judged often times as fakers or attention seekers.
I am still struggling to deal with RA stealing my riding away from me. I have thrown myself back into photography as a distraction. While it helps ... it's just not the same as riding. I know the sooner I can accept no longer being able to ride, I can move on. I'm trying.
I have gone back to injections, the infusions just have not worked well for me. Cimzia doesn't hurt like the Humira injections did. Too early to tell if it's going to help much. Honestly after living with this for 14 years now, maybe I'm just cynical, I don't really expect much help or relief any more. I'm not depressed or feeling sorry for myself, I will be surprised if there is much of a difference.
Below are a few photos I have taken over the winter. Hope you enjoy them.



Thursday, December 29, 2016

Applying for Disability Benefits with Arthritis

This is a guest post written by Deanna Power, Director of Outreach at Disability Benefits Help. I know there are some, like me, questioning whether they will be able to work up to retirement age. I am seriously doubting that I will be able to work another 8 years but am also saddened to know that I do not, as of right now, qualify for disability help.

Arthritis is a leading cause of disability in the U.S., limiting the activities of nearly 10% of the American adult population and, if predictions turn out to be accurate, it will affect nearly 26% of people over the age of 18 by 2040.

There are two primary types of arthritis:
  • Rheumatoid arthritis: occurs when the immune system attacks the lining of the joints, eventually damaging both cartilage and bones
  • Osteoarthritis: occurs when daily activity wears down the cartilage in your joints

  • Both forms of arthritis cause pain, inflammation, and other complications that can impact your ability to work full-time. If this happens to you, you may be able to qualify for Social Security Administration (SSA) disability benefits, which will allow you to meet your living expenses, medical treatment costs, and other obligations.

    What Disability Benefits Are Available?

    The SSA has two types of disability benefit programs available to those who qualify. While each one meets the needs of a different type of applicant, both deliver benefits to people who are disabled and meet certain medical criteria.
  • Social Security Disability Insurance (SSDI): Pays benefits to disabled individuals who worked long enough to pay Social Security taxes and therefore ‘insure’ themselves.
  • Supplemental Security Income (SSI): Pays benefits to those with limited financial resources, such as children and the elderly. This is only for the very needy, so if your spouse works and earns income, you will not qualify for SSI.

  • Medical Eligibility with Arthritis

    The SSA determines your eligibility by consulting the Blue Book, which is its official catalog of disabling conditions.

    Rheumatoid arthritis (RA) appears under Listing 14.09 Inflammatory arthritis, which states that you will be considered disabled if you meet one of the criteria below:
  • You have trouble walking and need to use a walker, two canes, or a wheelchair.
  • Your arm joints are so severely affected that you can’t perform most tasks.
  • One or more major joints are inflamed or permanently deformed, accompanied by problems with two or more organs or systems, causing fevers, weight loss, malaise, and / or fatigue.
  • You have ankylosing spondylitis (inflammation of the spinal joints), with your spine fixed at 45 degrees.
  • Your RA repeatedly flares up, accompanied by fevers, weight loss, malaise, and / or fatigue.

  • Osteoarthritis is covered in Listing 1.04 Disorders of the spine. To qualify under this listing, you must meet one of the following criteria:
  • Nerve root compression accompanied by pain and / or loss of motor, reflex, or sensory ability
  • Spinal arachnoiditis, a pain disorder caused by the inflammation of a spinal cord membrane
  • Lumbar spinal stenosis, or choking of the spinal nerves in the lower back accompanied by stiffness and pain

  • Arthritis is also mentioned in Section 1.02, which deals with joint dysfunction. To meet this listing, your joints must experience arthritis-related deformity accompanied by leg or arm impairment.

    Applying for Disability Benefits with Arthritis

    When you apply for SSA benefits, the application must be accompanied by medical images and documentation that confirms your diagnosis. Examples include:
  • X-rays
  • MRIs
  • Blood work that shows the degree of inflammation in your body

  • Your doctor will also have to complete a residual functional capacity (RFC) form, which the SSA will use to determine if having arthritis prevents you from working at a job you are trained and qualified for, or at the very least learning and mastering a new skill. If you are applying for SSI, which is strictly needs based, you must submit your financial details and be interviewed by a SSA representative.

    Receiving Benefits Without Meeting a Listing & Applying

    If you don’t meet a Blue Book listing, you may still be approved for disability benefits via a medical vocational allowance. The SSA reviews your RFC form to evaluate how arthritis limits your daily activities and will grant you benefits if the impairment is significant. Medical vocational allowances are intended to make benefits available to disabled individuals who did not meet a listing.

    For more information about qualifying for disability benefits when you are living with any type of arthritis, visit the SSA’s website, contact your closest SSA office, or call 1-800-772-1213. Arthritis can be challenging to cope with, but regular monthly payments will ease your financial burden and cover your medical costs as you improve your quality of life.

    Tuesday, December 13, 2016

    Med Switch - Take 5

    After a long heart to heart with doc yesterday, he did an exam then checked the markers on my blood work and slipped into his office for about 5 minutes. Upon his return suggested that, after comparing my blood work, swelling, CRP, etc, that we try Cimzia. I had started my visit with inquiring about switching to Actemra injections. He said that if I was dead set on them that we could go that way but if the Actemra infusions weren't working well that he was reluctant to go with Actemra injections. I understood his logic, besides ... he is the doctor.
    So I started off with a double injection yesterday at the rheumatologist office and they sent my prescription off to my drug provider with my health insurance. I checked and Cimzia is on the specialty drug list so there won't be any complications there. I was disappointed that Cimzia does not come in a pen kit, just a syringe. I was quite pleased with the fact that Cimzia does not sting nearly as bad as Humira when injected. Cimzia is a Tumor Necrosis Factor (TNF) blocker used to treat moderate to severe rheumatoid arthritis (RA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS). Of course it comes with the proverbial kitchen sink full of side effects.  

    I can now add another face to the totem pole of failures for me with my 14 years of living with RA. Add Actemra to the list with Enbrel, Orencia and Humira as no longer effective for me. One thing that is stuck in the back of my mind though is I was only on Actemra for 15 months. I hope that doesn't indicate that my body is getting better at defending itself against RA drugs. I guess all I can do is ride this new train as far as it will take me.

    I would like to wish everyone a Merry Christmas and a Happy (and pain free) New Year!


    Tuesday, December 6, 2016

    I Was Hoping For Better

    This is a post that I have been putting off for quite a while.
    RA has not been kind to me this year, actually starting late last year. I switched meds hoping for a miracle drug to come help me ... that didn't happen. I have adjusted my eating, I still walk everyday and do some light weights when possible. I have cut way back on soft drinks (my single vice that I still have) and drink mostly water and vegetable juice now. All for nothing, I continue to struggle and haven't rode over 1000 miles all year long. Truthfully, probably closer to about 600 miles. I sold one bike in September and I now have my only bike left for sale.
    I felt this day was coming so I plunged myself back into photography early this spring to have something to occupy my mind and time. Riding has been a huge part of my life since I was 10. While photography has worked to some degree, it sure doesn't take the place of getting away from everything on a bike for 5 or 6 hours. Strangely I am semi-okay with selling my bike and moving on.
    Now for the next stage ... I am struggling to survive at work as well. So much so that I am starting to look in to disability. I have a rheumatologist appointment next week and will talk further with my doc about it and the possibility of another med doing more for me. I will also have a guest post by Deanna Power, she works with Disability Benefits Help and can offer some insight into how to apply for disability.
    I am in the early stages of starting a photography blog or maybe converting this blog to photography, not sure yet ... still kicking it around for now. I truly hope that all of you are doing good in the fight against RA. It's not easy, it's not fun but we must continue on!  

    Tuesday, September 6, 2016

    Friends Old and New

    I talked with a friend this morning who has been struggling. She was asking about drugs that I have used, Humira is wearing down for her. I told her "I'm sorry you're in pain" before I realized the irony of that statement. Despite taking high priced, high powered drugs, we still hurt, at least I hurt every day. It takes extra pain for me to admit that I "hurt".
    I have been where she is before. The drug just doesn't work for you any longer but you keep telling yourself I'm just in a flare right now. Once I get past it I will be fine ... but getting past it never comes. It's scary just thinking about changing meds due to fact that even if you and your doc do pick one that will help you, it often time takes weeks, if not months, to see the full effects of what a new med can do for you. This means that, in most cases you have put off changing meds for 3 or maybe 4 months, then switching and waiting another 3 or 4 months to see if it is going to work for you, you have lost nearly a year of your life. And it's not just the losing time, you are in varying degrees of pain for this time frame as well. I wished her luck and asked her to keep me informed of how she is doing once she switches.
    I met a, new to the sport of adventure riding, guy quite by accident a couple of weeks ago. We have spiders and ants and had a company come out to spray the house, shop and yard. The guy freaks out when he gets out of the truck and sees my bike in the driveway. He has the same bike and is new to our area and looking for places to ride. So I took him on an easy 75 mile semi-adventure through the edge of the city, out through farm land and then rode down next to the Arkansas River for a few miles stopping at a lock and dam. Then I took him through an abandoned camp ground that would make a good setting for a slasher type movie if it would have been night time. It is gratifying to see someone new to the sport get so excited over what I take for granted riding. Plus he lives less than 4 miles from me so we will be riding together more this fall.
    Spent the day on the lake last week, different view of a bridge.

    Plane buzzed us and waved it's wings after Donna waved at it.

    This crane was none too happy with me taking his picture,

    A little forest road action.

    A piece of abandoned highway we rode.

    Tuesday, August 9, 2016

    Foiled Again

    I had my infusion yesterday. It typically makes me fatigued and sluggish, so I just came home and cleaned up in the shop and got my bike ready to ride. It feels good wanting to ride again ... perhaps that would be more appropriately stated "feeling good enough to ride again".
    Ah, so much for good intentions. My infusion hit me like a ton of bricks. I am working nights temporarily so I stay pretty close to my night schedule on my days off. I went to bed at 3 am this morning planning on being up and leaving on my bike by noon. I got up around 11 as planned and did a couple of things I needed to do then sat down on the couch. I was so tired, I told Donna that I was going to lay down for a little bit longer. I woke up at 6:30 this evening. Yep ... I slept 13 hours and I'm still exhausted. Nothing new for any of you living with RA, but it sure can get in the way of having a good time.
    I went out to the Blue Moon Observatory in eastern Oklahoma last week for my first attempt at shooting the Milky Way. I found Blue Moon on dark sky finder and it turns out that I have rode by it many times on rides and never knew it was there. Dave Alford owns Blue Moon and doesn't want people coming up to his house just to look around and I don't blame him. Dave was a super nice guy and had many stories to tell as it started getting dark. Once it was dark, we all got serious and I was somewhat pleased with my first attempt. I want to shoot the Perseid meteors this week but the forecast for the peak days are mostly cloudy nights.

    Almost showtime as the triangle pops out in the evening sky.

    The Milky Way with a meteor crashing in on the top left of photo.

    A satellite streaking across.

    My favorite shot of the night.

    Swung to north to get the Big Dipper and the lights of a far off town burned
     in on a 30 second shot. It was pitch black to look at the horizon.