Happy 2018

As 2017 comes to a close, it's been a year of ups and downs for me.

DOWNS
endured another medicine switch
med switch didn't help much
RA forced me to give up riding
still haven't sold my last bike yet hoping one morning I will wake up and miracuously feel better and start riding again (yeah, I know ... sounds dumber when I type and read it)
noticing more mobility problems

UPS
daughter will deliver twins in January (1st (and 2nd) grandchild)
becoming more confident with the camera
preparing my first photography exhibit for mid spring

I would like to wish everyone a Happy Safe New Year while keeping up the fight against RA! And remember it's all about the attitude ... pick a good one.

Sorry About My Absence Here

Good news ... the Cimzia is working. Or is it just that the weather has turned hot and dry that is helping me out? I am guessing it is both. While I am doing better, I'm not doing "riding" better. I have my last bike that I own for sale now and I'm moving on. Giving in has not been easy, it never is, but I'm enjoying photography as a distraction from RA now. Below are a few shots I have pulled off this summer.

 Milky Way with passing car light trail

 Eclipse shot through solar filter

Light trails shot through suspension bridge 

One of our hummingbirds 

Natural Dam under moonlight 

Spiro Lake at blue hour sunset 

Light trail of train

Cossatot River bridge at sunset

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.

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.

 

 

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.

 

 

 

 

 

 

 

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.

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!

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!