Hoping to Survive the Weekend

By Sarah Daniels, Guest Columnist

How are chronic illness sufferers with life threatening problems supposed to be safe when the people working for the insurance companies, making life and death decisions about their medical care, have no medical training or background whatsoever?

Why is it up to some high school graduate whether or not I can get oxycodone? The same medication that a pain management specialist, primary care provider, neurologist, Ehlers-Danlos syndrome specialist, and 10 other doctors all agree I need to be on.

The is the same medication I was finally given permission to use after YEARS of suffering terrible pain every second of every day, being forced into physical therapy five different times, actually worsening my condition (it can be extremely dangerous for someone with Ehlers-Danlos to participate in physical therapy if the therapist has no knowledge of the illness), paying $8,000 for laser therapy with absolutely no results, and being forced to trial endless medications that are far more dangerous but cheaper for the insurance company -- just so I could be on a medication that we already knew was safe and worked with great results.

You know what is on my mind today? Whether or not I’ll be able to make it through the weekend without having a seizure and dying. NOT because I get seizures, NOT because my condition progressed so much that there is no hope, and NOT because the doctors don't know what is wrong with me or how to help me.

No, it is because a few people in some office working for a money hungry insurance company that has made a monopoly out of the health of our fellow citizens couldn't get their act together and figure out what was wrong on their end by 5 o clock Friday.

I was on the phone with Blue Care Network (Blue Cross-Blue Shield of Michigan) for hours Friday. HOURS! They couldn't tell me why I can't get my medication, just that I can't get it. They also wouldn't tell me if any of their rules or regulations changed.

They would only tell me that just because I never had a problem filling my meds before doesn't mean there isn't a problem now. They couldn't even tell me what the problem was!

I have the pharmacy, my primary care physician and my specialists all on my side, telling them I need the medication. Telling them how dangerous it will be if they don’t get this figured out. Telling them my life will be in jeopardy. And what is their response?



"Ma’am, I have no medical background so I can’t discern if that’s true or not.”  

Try Googling Ehlers-Danlos syndrome. Open your eyes, your heart and have some compassion!

I have done everything right. I have all the authorizations I need and have taken my meds as prescribed, no matter what the circumstances have been. This is why people all over the United States are dying. This is why suicide rates have jumped since the new CDC opioid guidelines have been put in place.

If I could pay for the medication out of pocket I would, but I am on disability like a lot of other people. My money can either go toward my rent and utilities or my medical bills, but it doesn’t pay for both. Most of the time I am struggling to have food on the table and gas in the car. I suppose on the bright side, with gastroparesis and a severe mobility disability, at least my need for both of those things is less.

You want to crack down on the heroin epidemic? How about allocating some funds for substance abuse and mental illness? How about counseling instead of jail time? Heroin addicts could care less about a rule or regulation. They will find a way to get high no matter what.

The war on opiates is killing chronic pain patients like me, who, if it weren’t for their medicine, would be bed ridden. We are the ones suffering. We are the ones paying for others’ choices and mistakes.

This isn’t right. Something has to be done. It’s 2016. There is no reason on earth that a 29-year old woman, a U.S. citizen, should have to worry about dying because they cannot get the medical care they need.

Sarah Daniels lives in the Detroit, Michigan area. She suffers from Ehlers Danlos syndrome and gastroparesis. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

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.