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.

    Wednesday, July 27, 2016

    Thank You Healthline

    I was pleasantly surprised to find that RA Adventure Rider made Healthline's list of the Best Rheumatoid Arthritis Blogs of 2016! I have not been as persistent lately but will strive to get back on track. Thank you Healthline and Nicole.
    After this months infusion, I received a call about my blood work. My D was low ... no surprise there. My B-12 was also low ... not much of a surprise. Oh, and my thyroid was low ... ok, you got me there. I had to go back in for more blood work last week to verify that my thyroid is indeed low before we make a move (more meds I assume). However, not to wish a bad situation on myself, but I'm kind of excited about it. Low thyroid can lead to hand and foot pain, fatigue, unexplained weight gain (15 lbs since last fall) and extreme sleepiness. Of course there are several more but these are the (my) main ones that jumped out as soon as I began researching it. If it is low, and I can get it back under control, maybe ... just maybe, I will feel a little better and more like doing things again. See what I'm wishing for now?
    I got the bike out for only one short ride but again, it just felt good to be riding. I need to pull some maintenance on it soon but just can't make myself get out to the shop and do it. Hopefully this is the low thyroid problem ... I hate thinking that I have become this lax on bike maintenace and repair. I have always enjoyed working on my bikes in the past.
    I have been photographing downtown at night and am enjoying the challenge of shooting after dark. There is a bit of a learning process, more trial and error but with digital, you see instant results and can make corrections and continue shooting. In the old days you had to send film off then wait 2-3 days before seeing how bad you screwed up. Plus film and processing wasn't cheap.

    Sunday, July 10, 2016

    Road Trips

    I have been feeling better over the past month and on last months visit to my rheumatologist, I go in once a month for an infusion and blood work, discovered what I already knew. My swelling and inflammation is down while my vitamin D level is also down. I am used to my D being down, no big deal.
    I got the bike out two weeks ago and rode over west to photograph an old bridge. Very unglamorous ride, all asphalt with little to see but it sure felt good to be back on the bike! I'm not sure which of us was happier, me or my bike.  I did a short ride down by the Arkansas River last week and am going somewhere tomorrow. I'm not up to doing long rides yet but very happy to feel up to being able to ride again.
    I met with Greg last Tuesday and we headed out at dark to do some light painting at a waterfall close by. It was our first time and we learned quite a bit. The photos at the bottom are of that.



    Tuesday, June 14, 2016

    I'm Back!!

    Man, this spring has hit me hard. I have not felt good at all, in fact, I have not rode my bike since the last real ride I did with Mike and Greg back in February. Pain and fatigue have had me down. Then, amidst thoughts of selling my bike since I don't feel like riding, last Monday the rain just stopped and the heat lit up. Suddenly I am feeling back to MY normal (not everyone elses normal) and I have got more done around the yard, flower beds and shop in the past 10 days than I have done all year! I am going to ride next week and I can't tell you how much I'm looking forward to it. I guess I have been borderline depressed over it thinking the new, stronger infusions weren't working. I haven't even kept up with my blog and I have no doubt lost some followers over it. I hate that but I really do appreciate everyone who has e-mailed me checking on me. You know who you are and you brightened my days by doing so. So, I'm back and hopefully next week, I will have a couple of new tales from the road and photos.
    Speaking of photos, I have a new Nikon DSLR with a couple of long lenses. Here are a couple of shots I have shot with it so far. Not sure I want to carry this camera with me on the bike just yet.
    Sunset from my front porch last week.

    Time exposure shot downtown Fort Smith.

    Moon shot with Vivitar 650-1300mm, this was zoomed to 900.

    Wednesday, February 24, 2016

    Winter 2016 ... Mild One But A Rough One

    Nicole at Healthline sent me a link that might prove useful. If it can just help one person it makes it all worthwhile. 7 Tips From People With RA : 

    It's been a long while since I have posted anything. I have had a couple of people checking on me and I do appreciate it. I am doing better on the Actemra but it has knocked my immune system back to where I have caught everything that has come along this winter. I had the stomach flu mid January and thats the hardest anything has hit me in a LONG time. At one point, with the exception of running to the pot to either sit on it or stand over it to hurl, I slept 35 hours straight. I have also had a sinus infection, a common cold and just as I thought I was about to be semi-normal again ... BAM, bronchitis!

    Through it all though, my RA has been pretty well managed and I am thankful for that. With the exception of my work days, I average 24,000 steps per shift on work days, I am doing well. I have less fatigue and reduced joint pain. I'm also sleeping better through the night and that is a big help. Any time you can get up feeling more rested in the morning just means your day is going to be a little easier for you.
    Then there's that moment when you open a letter from your health insurance company and have been turned over to a claims research center for treatment for "severe pain in your joints". No sh**, I live with serious joint pain every damn day. Haha, I thought that the rheumatologist after my doctors name combined with joint pain would be a dead give away but that just shows how much I know! The crime is my health insurance is going up every year more than my cost of living! Don't see anyone investigating that though. When the lady with the claims research center found out that it was for treatment of RA, she immediately apologized and told me that she was closing the case out. I understand there is a lot of fraud on both sides of the fence with insurance companies. What set me off is that I have been treated for RA now (same insurance company the entire time) for over 12 years and been using the same doctor for over 11 years ... and now they are going to question it?
    Temps have been pretty good but I have only managed two rides so far this year but that will change soon. I have a ton of bridges and a few ghost towns in Oklahoma bookmarked along with three weeks of vacation. I got to ride with Greg and my old racing buddy Mike a couple of weeks ago. We rode down to and over the tunnel on I-49. I thought it was going to be a photo op but it was more of a big let down than anything. It was so grown up with trees and fenced off so you couldn't get closer for a better photo.Greg and I are going back up there when it warms up, he saw the train trestle out of Winslow. We both want to get some photos of that.

    From on top of the Bobby Hopper Tunnel over Interstate 49