37 and Going on Disability

 37 and Going on Disability

I never thought I would be writing a story about a friend in so much pain, but I suppose that is not a terribly original sentence for this platform.  Eight years ago, at 29, Caitlin was diagnosed with an autoimmune disease called ankylosing spondylitis (AS).  AS is a debilitating form of arthritis that primarily affects the spine but can involve joints as well.  Inflammation occurs where ligament, joint capsule, or tendons attach to the bone and can lead to pain and swelling along the spine, jaw, pelvic bones, sacroiliac joints, chest, and heel eventually leading to a spinal fusion. 

AS is, and will continue to rob her of her mobility and quality of life.

The reason for my plea for help on behalf of Caitlin is that she is $35,000 in debt because her health coverage refused to pay for many of the treatments, she needed to remain functional.  There was no other option than to do the procedures anyway. Below is the story of her life now and what she has waiting for her.

  

Caitlin and I met about 10 years ago while doing a community theatre musical.  She painted and put together the sets and, I waited to dance and sweat on her stage.  Caitlin is half British, and it took me about two years to break her, and by that, I mean for her to open up to me.  She did not spew her woes all at once, but finally, she got to the point where she’d actually ask me for help or tell me what was truly bothering her.  I know Caitlin needs help with her medical bills and the story you are about to read explains why.

At 15, doctors diagnosed Caitlin with joint hypermobility syndrome which is a connective tissue disorder characterized by constant muscle and skeletal pain. 

In her right wrist, Caitlin experienced chronic subluxation, which is a partial dislocation, worsened by tendonitis.  She was forced to wear braces throughout middle school and high school.  Lower back pain led to steroid injections. 

Caitlin’s left shoulder became achy and painful and began partially dislocating (subluxation) as her wrist did.  Once subluxation occurs, even with immobilizing the arm, it will partially dislocate more frequently often tearing tendons and ligaments. Finally, in 2001, Caitlin was forced to have surgery to correct the problem.  Had the surgeon done the procedure correctly, the shoulder would have been fixed, but he didn’t. 

Trying to repair the damage the first “surgeon” caused, Caitlin had 13 surgeries on her left shoulder in 2002, 2003, 2005, 2007, two in 2008, 2009, 2012, two in 2014, 2015, 2017, and 2018.  The muscle tissue is dead leaving her with so little strength on her left side, she has to use her entire body to move something as easy a chair on casters.  Her last option is a reverse shoulder surgery (reverse shoulder arthroplasty) which relies on the deltoid muscle, instead of the rotator cuff, to power and position the arm.  The research available on this procedure focuses on people 65 years and older.  So, she is left with an arm that is attached but doesn’t do what it’s supposed to because no muscle remains. 

I was in the hospital with Caitlin when her robe slipped from her left shoulder.  It looked as if a shark attacked her.  The scarring is the only thing left.  Amputation is a reality with one more injury.

Even with all these surgeries, she has still had multiple stabilization procedures, hardware removal, hardware installation, and cleanouts of bone spurs and scar tissue.  What is the result?  Constant pain.

The course of the disease is as horrible as you’d think.  Spinal inflammation creates chronic pain worsening in the early morning hours making sleeping through the night impossible.  Caitlin takes Enbrel, non-steroidal anti-inflammatory drugs (NSAIDs), and Cymbalta for pain, anxiety, and depression due to the chronic agony, amongst others, but what are you supposed to do, when such medications do not improve your quality of life?  You see a physician.  In this day and age, society judges anyone who takes opioids is a drug addict regardless of the fact that correctly Caitlin sees one doctor, a specialist in pain management, who prescribes opiate medication.

I have been to the hospital too many times with her for her frequent kidney stones and migraines to see the nurses and doctors look at her as if she is faking agony just to get the drugs, the country is just now considering a problem.  I have heard her refuse opioids since she has an appointment scheduled with her pain specialist.  It is a humiliating experience.  Another woman with AS says it best,

“When you take narcotics for pain relief you are branded a criminal. You are made to justify and prove your innocence to everyone who knows the secret: doctors, lab technicians, pharmacists, loved ones, colleagues - even yourself at times (Anonymous Author, The Price of Pain Relief)”.

Those who suffer, and I do mean suffer, with AS do not die sooner, but the pain is so excruciating, they wish they could. 

No longer able to do her job, Caitlin reluctantly quit.  Now, she goes through the process of applying for disability and though she qualifies on numerous counts the modus operandi is for Social Security to deny her three times.  The four levels of appeal within Social Security's system are reconsideration, hearing, Appeals Council review, and Federal Court review.  Ostensibly she could be approved at any of these appeals, but it takes time, and she has none.

Historically, the Appeals Council has been arguably the slowest parts of the Social Security Administration. Typically, it takes anywhere from 18 to 24 months to receive a decision from the Appeals Council. According to recent reports, however, the average processing time for getting a decision is now 395 days, speeding up the process to just slightly over a year.

So, here we are.  There is no such thing as a donation too small.  I am asking, no begging for your help.  Caitlin is stubborn, funny, there for others, and her ethics are stellar.  What else can I say?  Please help.

Kindly,

Loretta Collins