Sunday, June 26, 2016

"Addicted to Steroids"

I absolutely hate when people use the term "addicted to steroids."  This no doubt stems from a 2013 phone call with Endo #4 yelling at me claiming that I was "just some depressed girl addicted to steroids."

This pretty much describes my life moto.
Let us dissect the Merriam-Webster definition of addiction.

The simple definition is given as 
a strong and harmful need to regularly have something (such as a drug) or do something (such as gamble). [Emphasis added by me.]
The medical definition of addiction is given as
: compulsive physiological need for and use of a habit-forming substance (as heroin, nicotine, or alcohol) characterized by tolerance and by well-defined physiological symptoms upon withdrawal; broadly : persistent compulsive use of a substance known by the user to be physically, psychologically, or socially harmful—compare habituation [Emphasis added by me.]
Now listen up y'all.

Do not dare tell me that my steroids are an addiction.

Addictions carry a negative connotation in our society. Did you notice how each variation of the definition for addiction included the word harmful?

This type of label is not helpful when associated with our life-saving, life-sustaining, life-giving medicine.

After my nightmare crisis of 2013, I was referred to eight different specialists. I had the pleasure of meeting an incredibly ignorant and arrogant rheumatologist who repeatedly told me that all of my medical problems were a result of the steroids. Throughout the initial consultation appointment, he continuously stated that he would never prescribe steroids to someone my age for arthritis.
"I'm not on steroids for arthritis. I am on steroids for my Primary Adrenal Insufficiency." 
"Well I still would not give you steroids. They are causing all of your problems." 
"Ok. You would not lecture a diabetic on how the insulin they are required to take to live due to the fact that their pancreas shut down is causing all of their problems. Stop telling me that steroids are causing all of my problems when I have Primary Adrenal Insufficiency. Besides, I did not come to you for arthritis treatment. I came here so that you could check me for Lupus."
He and I did not get along.

I wore my "Steroid Dependent" shirt to an indoor soccer game once. The other team felt the need to instantly harass me.
"Oh, she's on 'roids?! Watch out! She'll run faster! Where are your 'roids? We want some!"
Please allow me to dispel some myths right now.
  1. We do not take anabolic steroids, aka "performance enhancing" steroids.
  2. We take corticosteroids, which influence almost every part of the body.
  3. We do not take our steroids to "run faster." We take our steroids to live.
We have to fight enough battles day to day to remain Clearly Alive. Attempting to defend an improperly labeled "addiction" should not be one of those battles. Let us raise awareness to eliminate this dangerous phrase.

I am only addicted to steroids if you are addicted to oxygen.

Addicted to oxygen? Does that sound ridiculous? Comparing our life-saving medicine to a harmful addiction is just as ridiculous. Let us work together to change the discussion. Instead of telling us that we are "addicted to steroids," why don't you ask us about life-saving steroids?

I am no addict. 
I am Clearly Alive.

Want to help raise awareness?
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Proceeds are donated to NADF and AIU.

Sunday, June 12, 2016

ICYMI: Our Backgrounds

In case you missed it, Action for Adrenal Awareness released our first YouTube videos for the month of June. This team was launched in April of 2016 with a live stream YouTube video titled Action for Adrenal Awareness, shown below.

We rested for the month of May, but our plan moving forward is to release at least one video covering a variety of topics on the second Saturday of the month. For the month of June, we wanted to introduce ourselves. Below are a few of our videos.

Debby: Finding My Passion

Debby notes that "after diagnosis there was no way I could keep that pace. So I had to find something else to do, otherwise I would be laying on the couch all day whining about how bad I feel and I hurt. I didn't want that kind of life so I had to find my passion."

She was able to find her passion through baking. She also encourages us to find our passion. A diagnosis of Adrenal Insufficiency will change your life. But that does not mean you can give up on living. Look at some of the beautiful cakes Debby has created, a talent and a passion she did not discover until post diagnosis.

Kimberly: A Slice of My Life with Adrenal Insufficiency / Adrenal Disease Coupling

Kimberly encourages us that it takes about a year to adjust to our new normal of living with Adrenal Insufficiency. She also reminds us that this adjustment does not only effect those with the diagnosis but rather it forces an adjustment on everyone involved, especially the spouse. Kimberly later introduces us to her husband, as they talk about some of the changes that came about post-diagnosis.

As Mark states, "Yes. Life really will change. But being able to accept that change and appreciating whatever you have together with that person and really trying to enjoy what you can do together." He encourages both the diagnosed and the not diagnosed to acknowledge the grieving process. Do not attempt to hide the fact that there is a loss, but also appreciate what is still there taking things day by day.

This reinforces the point that a strong support system is critical when living with any disease. I know I am unbelievably thankful for both my husband and my parents. With their support and encouragement, I am able to remain Clearly Alive.

If you are feeling alone or unsupported, please reach out to one of us. There are many support avenues we can point you towards. You do not need to walk this journey alone.

Amber Nicole: Around the World with Adrenal Insufficiency

My story is unique from the other ladies in the fact that I never really had a "pre-diagnosis healthy" phase of life. I was either un-diagnosed and sick, or diagnosed and treated. Truth be told, I still wrestle with that fact as part of my own individual grieving process. But even with that label of "chronically ill," I have been able to experience so many amazing adventures all over the world.

I have always been chronically ill. Like Kimberly, I am so much more than my list of diagnoses. This is why I am passionate about being Clearly Alive. Like Debby, I have found my passion.

If you have a topic that you'd like us to cover, feel free to suggest it here.

Saturday, June 4, 2016

Catch-22: Chronic Illness Style

For those of us with chronic health issues, there are many hurdles to jump over that others simply don’t face. We are often put in situations where success seems impossible to achieve. In my experience, the navigation of insurance company policies is one of those situations. The rules can be so contradictory that they seem purposefully designed to foil our best attempts at success. These situations are joking referred to as "catch-22's."

I've always appreciated Joseph Heller's character Yossarian, found in his novel Catch-22. Like him, I am Assyrian. Like him, I've had people almost kill me. Like him, they weren't specifically targeting me. They just had no idea how to treat my disease, and their ignorance almost cost me my life.

While reading the book, I laughed out loud when I came across the passage below. A pilot named Orr faces almost certain death if he flies more missions. The only way out is for him to claim insanity. However, by claiming insanity, he proves that he is sane. If he is sane, he would have to fly the missions. The author captures the dilemma best:
“There was only one catch and that was Catch-22, which specified that a concern for one's safety in the face of dangers that were real and immediate was the process of a rational mind. Orr was crazy and could be grounded. All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. Orr would be crazy to fly more missions and sane if he didn't, but if he was sane he had to fly them. If he flew them he was crazy and didn't have to; but if he didn't want to he was sane and had to. Yossarian was moved very deeply by the absolute simplicity of this clause of Catch-22 and let out a respectful whistle. 
"That's some catch, that Catch-22," he observed. 
"It's the best there is," Doc Daneeka agreed.”
Joseph Heller.

In the chronic illness world, I have dealt with my own Catch-22.

The pharmacy benefits on my health insurance reject all injectables on principle. I say they reject all injectables, but apparently insurance is willing to pay for some life-saving injection medicine but not others. Do you require a life saving injection in the form of an epi-pen? Congrats. Pharmaceutical benefits will cover your injection because it's life critical. Do you require a life saving injection in the form of insulin? Congrats. Pharmaceutical benefits will cover your injection because it's life critical. Do you require the life saving injection in the form of Solu-Cortef? You're out of luck. This life saving injection is not deemed life critical.

Do not fear! Although this prescription drug is not covered under pharmaceutical benefits, it is covered under medical benefits. All you have to do is find a pharmacy that has the capability to bill medical codes.

After many hours on the phone with multiple pharmacies, medical insurance agents, lots of googling, and chatting with others in a similar situation, I have reached the following Catch-22 conclusion:

  • The prescription Solu-Cortef is covered by insurance, but only if the pharmacy can bill to medical codes.
  • The only pharmacies that can bill to medical codes are specialty pharmacies.
  • Solu-Cortef is considered a "retail drug," and therefore specialty pharmacies do not carry it. They recommend I purchase the medicine from a retail pharmacy.
  • The retail pharmacy cannot bill to medical codes.
  • Therefore, my Solu-Cortef is not covered by insurance.
  • HOWEVER, my Solu-Cortef IS covered by insurance, but only if the pharmacy can bill to medical codes...

Now insurance did inform me that there is another option:

  • I must collect all paperwork that the retail pharmacy gives me with information about the drug.
  • It has already been determined that the paperwork that the pharmacy gives me does not contain enough information, and therefore the paperwork has already been rejected.
  • I must hand write on the proper "J" code (that's the medical billing code) on the paperwork that the pharmacy gave me, that insurance has already rejected. 
  • I must get my doctor to write a new script, not to give to the pharmacy, but to give to the insurance. This script must included my IDC-10 diagnosis code on it. 
  • The script needs to be sent in, along with the paperwork that insurance requires but has already rejected.

This appears to follow a similar logic as above. It's another catch-22 loop. "You want this piece of paper to process the claim, but you have already stated that you cannot process this claim off of this piece of paper, and thus the claim has been rejected. Yet you want this piece of paper to process this claim..."

Well played insurance company. Well played.

So what do I do?

I cash pay, using a Walgreens discount code that brings the price of the drug down from "This is so cost prohibitive we're going to bankrupt you" to "This is just kind of expensive, but your life is worth it." It's not necessarily ideal, but it does keep me Clearly Alive.

Clearly Alive.
Quote from Catch-22. Image stolen from Pintrest.

Do you have a fun catch-22 logic experience with your chronic illness? I'd love to hear about it!