To catch you up, I received short term disability payments through my employer over the summer. After an initial denial of my claim, I appealed the decision and eventually was approved based on a suspected diagnosis (and the pulling of strings of top executives in the company). With long term disability, I have not been so lucky. My initial claim was denied because they did not see sufficient evidence in my medical record to prove that I am, in fact, disabled.

Let me tell you, this is a very disheartening event–to have an insurance company extract quotes from medical records that “prove” I am qualified physically to work. Infuriating and insulting is more like it. They included one quote from my cardiologists note that stated on July 30, 2012 this doctor states “she is alert and oriented.” Ok, insurance company. Just because you can recall the date and know what type of building you are in does not mean that you can work 12 hour shifts as a nurse. They also decided to ignore the rest of the note which states that every time I stand up, my heart rate skyrockets to 170 and I have episodes of near syncope.

They extracted another statement from my neurologist that said that the small fiber biopsies were normal and negative for demyelination. But, what they failed to research is the fact that you don’t need small fiber biopsies to be positive to diagnose autonomic failure or dysfunction. They decided to ignore that fact as well.

I had my cardiologist fill out the physical capability form for the disability claim because he is closely following my case. He clearly stated that I cannot stand, lift, or walk. My physical capabilities are limited to activities of daily living only. Surprisingly, there was no mention of this document at all in the denial letter.

All this being said, I am currently in the process of appealing the decision. This could take up to 6 months. The worst part about all these minor details is that I am sick. I have no energy to sit up and research the policies, obtain all my medical records, call lawyers, etc. It seems almost impossible. But, I press on.

I will lose my employment officially next month–which means I will lose my health insurance. There is always COBRA, but without disability payments, that will deplete my savings quickly. Even with disability payments, I won’t be able to cover my rent, expenses, COBRA payments, or medical bills. It is also possible that I will be receiving treatment in the near future–an infusion that costs $10,000 a bottle. Five infusions in a treatment session, repeated every 6 weeks to 2 months until you are better.

At this point I’m simply frustrated. Unable to do much because of my current symptoms, I am stuck here just thinking about the claims and the impending financial difficulties.

It seems to me that there is something wrong with this healthcare system. So far, I have slipped through the cracks, been denied short and long term payments, and been passed around from specialist to specialist. You would think that I, an educated nurse, would be able to navigate the system–think again.

Everyday I would go to work as a nurse and treat my patients with dignity and respect. I would defend and protect my patients until the end. I worked hard to uphold the standards that my employer drilled into us. All I ask is to be treated by my employer and their insurance providers with the same dignity and respect  that I worked so hard to achieve for my patients.

Is that too much to ask?

Sarah Beth Cowherd is a nurse who blogs at SaraBethRN.com.