Saturday, November 21, 2015

Theoretical Steroid Curve Plotter

Gone are the days where doctors are suggesting just twice daily dosing of hydrocortisone to achieve that "normal" life with Adrenal Insufficiency. We're smarter now. We've learned that cortisol levels vary throughout the day, following the circadian rhythm. We've learned the benefit of splitting up our dosage and combining different types of steroids to give us more even coverage over 24 hours.

But there wasn't an easy way to visualize this theoretical steroid curve.

Until now.

(Are you using the cortisol pumpThis version of the tool is much easier.)



How to Use This Tool

This tool was designed in Google Chrome, and therefore runs best in Google Chrome. Additionally, if you are having problems on your mobile device, please switch to a computer. If you notice a problem, send me a message on my facebook page. We'll work to fix it.

For Google Chrome, please input the time in the format of HH:MM AM/PM. For all other browsers, please use military time. Confused about military time? For anything in the PM, add 12 to the number. 8:00 PM + 12 becomes 20:00. For anything in the AM, the time remains the same. You do not need to label AM or PM.

Limitations of This Tool

This tool plots the theoretical cortisol curve based off of mathematical formulas for each steroid. It is assumed that the value in the blood stream increases in a linear fashion until the medicine "kicks in." It will then exponentially decay according to the biological half life. All values are given in terms of equivalent hydrocortisone. The following properties were used:

Steroid Type
"Kick In"
Biological Half Life
HC Equivalent
Hydrocortisone
30 minutes
1.5 hours
1 mg
Prednisone
2 hour
4 hours
4 mg
Dexamethasone
4 hours
36 hours
26.67 mg

Please note that these are theoretical values. Each individual absorbs and clears medicine at different rates and absorption is effected by many different factors. Additionally, your body does not absorb all of the medicine that you take. Dusty over at Addison's Support Advocacy has an excellent blog post explaining more about this. This tool does not currently take into account the systematic availability of hydrocortisone.

You will also note that there is no scale on the y-axis. This tool is designed to only provide a rough idea of a curve and not actual numerical data.

Also realize that blood work does not provide an accurate representation for oral steroid replacements. Please consult with your doctor and base your individual steroid treatment off of your symptoms and what works best for you. We are all incredibly different. This is definitely not a one-size-fits-all disease.

The purpose of this tool is to start conversations that can perhaps improve your quality of life. We don't have to live miserably with Adrenal Insufficiency. We can be Clearly Alive.

Shout Outs and Thank You's

This project has been over two years in the making and I definitely did not complete this by myself. I have some awesome engineering friends who were willing to use their technical knowledge so that my dream could be turned into a reality. Thank you M. Galland, J. Pawula, W. Toth, and A. Vera.

Medical Disclaimer

All content found on this website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. 

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.

By using the Tool, you acknowledge and agree to and accept these Terms of Service, including all policies and terms linked to or otherwise referenced herein.

Reliance on any information provided by this website and this tool is solely at your own risk.

Saturday, November 14, 2015

The Dinner Party

I was in eighth grade and not yet diagnosed. My friend's mom knew of a fancy dinner party that could use a few middle schoolers to act as "waiters." We would be required to wear black pants, a white button up top, and walk around the mansion with platters of hors d'oeuvres serving the guests. It was touted as a fun experience where I could earn a bit of cash and interact with fancy people.

My friend and I agreed to do it.

I vividly remember my anxiety before the event. Was I wearing the correct outfit? I think these pants are black, but are they black enough? Would I show up at the right time? I know she said to arrive at this time, but did she really mean this exact time? What do I say after I ring the door bell? What if something goes wrong? Why did I sign up to do this? I just want to go home.

One of my many signs of un-diagnosed Adrenal Insufficiency included psychiatric symptoms such as anxiety and depression. When my cortisol is low, I have uncontrollable and crippling anxiety. To quote a case report published in March of 2015:
Psychiatric manifestations of Addison’s disease were first reported by Klipel in 1899 defined as “Addisonian encephalopathy” [5]. A few case series (n = 25) were published during the 1940s and 1950s revealing a high association (i.e., 64–85%) between psychiatric disorders and Addison’s disease [6–8]. However, nowadays this association receives little attention.
I wish more doctors were aware of this association.

As the night of the party wore on, I had an increasingly difficult time comprehending simple instructions spoken to me. I also began to grow even more dizzy. We were discouraged from taking breaks in front of the guests, so I would retreat into the kitchen. Eventually I was discovered and forced out with another plate of food and a reminder that I was being paid to work and not sit. I tried to put on a smile, but I felt at any moment I would collapse.

After the party ended, I was required to help clean. I remember being scolded for not using warm enough water to wash the dishes. I tried to explain that the hot water was causing my hands physical pain. The man in charge checked the water and told me it wasn't that hot. He believed I was just trying to get out of work, but that was not the case. Eventually I was to just dry the dishes, what he considered an even simpler task.

Except, my coordination was off. The group soon realized that they were much more efficient without my help. They finally allowed me to rest on the couch while they finished the job. I wish I could have explained to them the type of fatigue I was battling during that moment. No amount of mental effort or will power, no pep talks or even physical threats would allow my body to move.

I came home slightly richer but in a foul mood for a few days afterwards. I felt beyond miserable but I did not have the capability to fully express how awful it was. I thought living life was supposed to feel this way. I did not know any different.

Photo of the two of us from 8th grade.
My arms should have not been that skinny and my collarbone should not have been that visible.
I received my diagnosis of Adrenal Insufficiency about a year after this incident. Needless to say, I am doing much better now in terms of my health. I continue to learn and adjust. I continue to live. And I continue to fight to remain Clearly Alive.

References

  1. Julia de Lima Farah, Carolina Villar Lauand, Lucas Chequi, et al., “Severe Psychotic Disorder as the Main Manifestation of Adrenal Insufficiency,”  Case Reports in Psychiatry, vol. 2015, Article ID 512430, 4 pages, 2015. doi:10.1155/2015/512430

Saturday, November 7, 2015

My Brother's Wedding

I was very nervous about my brother's wedding on August 23rd, 2015. My adrenal insufficiency coupled with social anxiety means I don't always play nice when I grow overwhelmed. I wanted my brother's wedding to go well and not have my adrenal insufficiency flair up. I did not want to draw attention to myself. I wanted the focus of the event to be on the bride and the groom.

In the months leading up to the big day, I had to sit out on many activities. I could not attend my brother's engagement party. After extreme frustration, a panic attack, and many tears, my husband and I jointly decided that I would spend the evening quarantined to the couch with my cat while he ventured to the party alone. I was distraught. I tried to plan that day well. I tried to save up energy so that I could attend and show support for my brother and his fiancee. But in the end, I lost. I was a crying mess left alone on the couch. I sent my brother a very disappointed text message informing him I would be a no show. His response was absolutely perfect.

"We don't want you to waste energy feeling bad about it."
My brother knew I supported him, and that's what actually mattered. I had to continue to remind myself of that fact during the entire wedding weekend, as I would randomly decline participating in social activities due to health. I had to leave the rehearsal dinner early because my social anxiety grew to an uncontrollable level. I was extremely disappointed that I missed my dad's toast, for I know he gives amazing speeches.

Weddings are also opportunities to see many people that you haven't seen in a while. My brother's wedding was the first time for several guests to see me with my husband since our own wedding in March of 2014. They kept repeating to me and my family how I looked healthy. I looked happy. And it looked like my husband and I were doing extremely well.

We got to visit with the pastor that performed our ceremony.
In the chronically ill community, we grow very frustrated with the phrase "But you don't look sick!" I find the phrase "You look healthy!" completely different. These were close family and friends who saw me when I looked very sick. They remember looking at a pale, listless, bag of bones. They remember hearing stories of the multiple hospital stays and ER visits. Some of them were even at my side during the various hospital adventures. When they tell me I look healthy, they mean I look healthy. It's an exciting thing for them to see.

A picture of me with the beautiful bride.
Photo taken by Stephanie Brazzle Photography.
I am doing well. My marriage is doing well. My husband is doing well. And I look healthy. The weight that I have re-gained over the past year has made me look healthy.

I look healthy. I am healthy. I am Clearly Alive.
Photo taken by Stephanie Brazzle Photography.
Towards the end of the night, my brother approached me and told me that I handled the weekend perfectly. Suddenly, all of my insecurities about being chronically diseased did not matter. The only thing that mattered was that my brother was proud of me. And I am so incredibly proud of him.

I don't care how old or how tall he is, he'll forever be my lil' bro.
Photo taken by Stephane Brazzle Photography.
To the new Mr and Mrs:

May your friendship and love for each other continue to grow and deepen daily.
May you always be able to share a laugh together, even when times seem really, really scary.
And may you never ever forget that you have both my husband and I supporting y'all, constantly.

Love, your older sister.

Welcome to the family, new sister.
Photo taken by Stephanie Brazzle Photography.