Taking Control of My Disability Case

By Mia Maysack, PNN Columnist

This stack of papers may not look like much, but it is my medically documented life beginning in the year 2002.


I personally highlighted them, so I can confidently report that the words “headache” and “migraine” are mentioned hundreds of times throughout.

I've been in the process of pursuing Social Security disability for about three years, which is not uncommon. Many have abused the system and there's also a high volume of claims being submitted and reviewed every day.

It took me a long time to even get to the point of filing for disability.

What does filing say about me as a person? Will I be judged? They probably won't even believe it. There are so many out there that need and deserve this more than me.

I still have those thoughts from time-to-time, even though my chronic migraines and cluster headaches have impacted every aspect of my life in a negative way – including employment.

I do not take the collection of denial letters I have received personally, as they've got to do what they can to weed out whoever isn't entirely legitimate. I know that I am, so I'll keep fighting.   

In recent months, another denial letter came. They acknowledged I am unwell but still deem me “well enough.” I decide to appeal immediately, as they only give you 60 days to do so. I also hired legal representation to help me through the process.

When I called them to check on the progress of my case, their tone felt dismissive. I would get put on hold before finishing a sentence or receive roundabout answers to basic questions. I’d also be reminded -- as if I wasn't already aware -- that disability court dates are scheduling 23 months from now.

I don't mind waiting, considering the fact I have no choice.  But it seemed as though I was being slow walked on a hamster wheel and not moving forward at all. This week I chose to contact Social Security directly and they informed me that, according to their records, there is no appeal on file for me at this time.

What does this mean, exactly?  In short, my legal representatives have not been covering their responsibilities to me as their client. I've been scraping by with 26 cents to my name while relying on their word, which I've now been convinced means next to nothing. 

I asked a Social Security representative what my next steps should be to take control and clean up this mess. He instructed me to visit their website and file an online appeal, which has since been done. Since I can’t account for where exactly all the paperwork I've been sending to my "help" has been going, I plan to stop in my local Social Security office to hand my stack of medical records directly to them.

We are our own best advocates, but how do I advocate for myself?  This is one way. I am the one who knows and understands the extent of how this debilitation has derailed just about every goal or dream I've set my sights on. But I won’t let that define me. I am more than my illness and won't allow my case to be dismissed.

I'm aware that representing myself may very well set this process back even further, but I've come to the realization that if we want something done right, we've got to make it happen ourselves.

At first, I felt disheartened because this seems like a full-time job in itself. But when others do not hold up their end, I now see this as an opportunity to raise awareness, address policy, educate and ultimately claim ownership of my own life. Now and in the future.


Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: How I Won My Disability Case

By Arlene Grau, Columnist

Early March of this year my second hearing was set with Social Security regarding my disability claim. I had previously been denied and we appealed.

The judge wanted one of their rheumatologists to come in and read my blood tests, doctors’ notes and other medical records, because he said he couldn't decipher them.

Two weeks before our hearing date we got word that the specialist they selected was actually a kidney doctor.

My lawyer wrote the judge informing him that we wanted someone else because we felt that the doctor wasn't qualified for my case. We never heard back from the judge, but the doctor excused herself.

The day of the hearing the judge was as harsh as ever and upset because no one in his office told him about the doctor. He wanted to reschedule my hearing until they got another specialist.

But my lawyer wasn't ready to give up and I was so frustrated at that point that I begged him to let us say our peace. Reluctantly he did.

I suffer from rheumatoid arthritis, lupus and other autoimmune diseases. We were able to prove that I had missed numerous days from work due to hospitalization, surgeries or illness based on time sheets and hospital records. I also have numerous doctors’ appointments every month and had the medical records to prove it. Basically everything the judge had a question for, we had supporting documentation.

I had walked in thinking the judge was going to deny me again, because he had stated that rheumatoid arthritis and lupus aren't disabling diseases. I had plenty to tell him about that, but he just brushed off everything we had to say.

The second time around, he was very different.

I honestly believe that prayer works. That and being prepared. Having all your bases covered and making sure you have all your paperwork squared away. I got a print up of all my doctors’ visits and built a graph of them by month and year. Then I did the same thing for my hospitalizations. I also got a print up of my work time sheets and graphed the days I missed by month and year. For some reason the judge liked the graphs more than the print ups themselves.

In the end, the judge awarded me close to three years of disability that I was owed in retro pay. I’m also now receiving Medicare. Although it took 3 years, I'm glad I didn't give up and that I had so much positive support from friends and family. My family and I are finally able to put this behind us.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Disability Resources You May Not Know About

By Barby Ingle, Columnist

Over the past 20 years I have had many ups and downs with my health and my finances. After losing my job and company, I had to rely on food stamps, church food banks, and county mental health support groups.

While speaking with others in the support group, I found out that there are a wide variety of disability benefits that come from federal, state and private sources, such as worker’s compensation for people injured on the job and military benefits for soldiers and veterans.

We need to invest time to make sure that the resources available to us are being utilized. There are Social Security programs, Medicare, Medicaid, state assistance programs, utility company programs, handicapped bus passes and car licenses, to name some of them.

Too many of my friends either didn’t know about them or felt embarrassed to ask for assistance.

Knowing what each one is and how it can be used is important. For instance, Supplemental Security Income (SSI) comes from general tax revenues, not social security tax funds.

SSI is designed to help aged, blind, and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter. Typically, you quality if you have a medical condition that has prevented you from working or is expected to prevent you from working for at least 12 months.

Social Security Disability (SSD) comes from federal social security taxes that people pay into in case of long-term disability. You must have worked and paid Social Security taxes long enough to qualify. Depending on the state you live in, you can complete the application through the mail, over the phone, or even online.

If you receive SSD, you can quality for Medicare 24 months after becoming eligible for disability.  In my case, I became eligible for Medicare almost immediately, as it was a few years into my disability and they retroactively changed my disability date.

For others who apply sooner, you typically will receive your information several months before you are eligible to start Medicare coverage. I highly suggest that you fill out your papers immediately and return them. There are different requirements in each state for financial and disability levels. Medicaid services can included preventive care, immunization, screening, treatment, doctor visits, hospital visits, and vision and dental care.

Many states offer specific programs that can help you through daily living. It is important for chronic care patients to maintain independence to sustain their full range of experiences, rights and desires. Programs that provide training and support appropriate to the needs of each disabled person can be found in every state.

People disabled by pain may not realize at first that they are eligible for many of these services. They don’t think that their condition is debilitating enough to require handicapped parking, and underestimate the benefit of closer parking or how much energy it saves.

We should always be mindful of our energy penny bank. Handicapped permits and passes allow a disabled person to run errands, shop, go to doctor appointments, travel, and participate in other activities without wearing themselves out within the first few minutes of arriving at a destination.

If you have a disabling pain condition which may allow you to have a handicapped parking permit, talk to your doctor about it. Do not wait for your doctor to bring it up. Doctors are very busy and it is unlikely that this is foremost on their minds. Your doctor should not hesitate to sign the paperwork for you to get a handicapped parking placard if you are eligible under your state regulations.

Also be sure to get a bus pass for disabled riders. They are available in most states and typically give you free or discounted rides.

I used to take the bus often. If you find yourself in a city needing to take the bus, be sure to learn the schedule and let the bus driver know if you have any disabilities or need assistance. Ask him to remind you to get off the bus at your final destination or transfer location. I would forget my stop far too often. You learn to speak up when this happens and you miss a doctor’s appointment.

Patient transportation services are also available for some Medicaid and Worker’s Compensation patients. These companies ensure that patients are transported with the right level of medical expertise in the most appropriate vehicle, such as specialty vans that accommodate wheelchairs. Other modes of transport include ambulatory, wheelchair, stretcher, and air ambulance.

The insurance company is directly billed with a detailed invoice as to miles driven, time of transport, and drop off locations. Services are typically available every day of the year. You can set up this service with your claims adjuster or care manager. I know many who already use this service and love it. One of the iPain board members actually owns a company in Kansas and Missouri that operates this service. If you quality, ask for the help.  

No matter what resource you need, don’t hesitate to ask for them. Get the help you need to become the most active person you can be. Not treating pain is unethical and immoral. When you qualify for assistance, it means you have earned it and it is there to help you help yourself.

For a list of other free or low cost services available to you, checkout the Patient Resources section of Pain News Network. We all pray it is short term assistance, but if long term or life assistance is needed, be the best you can be and take advantage of the help that is available to you.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation (iPain). She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found by clicking here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.