Saturday, October 8, 2016

A Plan of Action

I have a well practiced elevator speech when it comes to explaining my Adrenal Insufficiency:
My adrenal glands are dead but I've been living with this for over a decade. I am normally very good about keeping on top of symptoms, however at times I still require assistance.
I try to take a very pro-active approach for managing my stress load. I was able to get through engineering college (with honors, while working) and although I am diseased, I request that you do not look down on me or judge me as disabled. 
If I suddenly get extremely irrational or emotional, it is not me. It is low cortisol.  
Here is my emergency injection of Solu-Cortef. Here are instructions for how to use it. Here is where I keep it. May you never ever have to use it. It's scary. However, if the situation arrises, please do not hesitate to inject me. It truly is a matter of life or death, and frankly, I'd prefer to remain Clearly Alive.
In September of 2014, I had an extremely emotionally taxing appointment.

The day after my appointment, I woke up with migraine. I tried to take more medicine, but I did not take nearly enough to cover my cortisol need. I knew I did not feel well, I just did not realize how bad it was.

I made it into work, but just barely. I went to fill up my water bottle in the break room area. I must have looked beyond awful. An unknown coworker took one look at my face and asked if I was feeling ok.

I told him no, I was not. I was horribly dizzy. He wanted to know where my cubicle was located, but I could not tell him. I could show him, but I could not verbally give him instructions. He escorted me back to my cube to make sure I arrived safely.

I attempted to sit down in my chair, but it was too high. I decided to lay on the floor, not really able to move and unsure of what to do. I probably laid there for around forty-five minutes until the coworker who sat across from me came into work and noticed me.
"Are you ok?!!! No, no, no, no, please don't be embarrassed that I caught you laying here on the floor. But seriously. Are you ok?
"I, uh, I think so. But I will let you know if the situation escalates."
"Do you need me to watch you, or, uh, can I run and go get coffee?" 
"You can go get coffee." 
His reaction to my situation caused a brief moment of mental clarity for me. I realized what I was doing was extremely stupid. I was clearly low on cortisol. I was battling a migraine, shaking, lethargic, incredibly dizzy, and did not want to leave the floor. My situation was also not improving. I had taken a little updose of my medicine, but it was not enough to cover my cortisol need. I took more.

Twenty minutes later, after the medicine kicked in, I was feeling well enough to be able to sit up. However, I still did not feel well enough to move or remain in a public place. I knew I needed to go home, but there was absolutely no way I could drive. I started to ask around to see who might be available. I finally worked up the courage to step into the cube of the coworker that sat right next to me. I was still fairly new to this team and had barely spoken to him. But he appeared to be my only option.
"Hi. I, uh, have a very strange request. I do not feel well right now. I'm too dizzy to drive. Can you drive me home? Like... now?"
My coworker dropped everything he was doing to take me home right then and there. 

At the time, my husband was working mere minutes from where we were living. He came home, checked on me, and determined I needed a 50 mg solu-cortef injection. My olive thief also refused to leave my side. After a three hour nap, lots of gatorade, and a tad bit more hydrocortisone, I felt alive again.

The next day, I returned to work. Several coworkers asked me about the incident, which opened up doors for me to explain more about my Adrenal Insufficiency. I had already posted items in my cubicle explaining an Adrenal Crisis, but many had just glossed over the information. However, my sudden disappearance caused several to revisit the material and read it in depth.

Poster can be found here.
Feel free to print and use. 
My coworker who first discovered me unable to move from the floor apologized to me.
"Oh my god! I did not take you seriously enough yesterday! I am so sorry!" 
I told him he actually reacted perfectly. He drew attention to the fact that I was NOT doing well which caused me to think, "Hmmm... I probably need more medicine." That extra dose of HC gave me enough strength to enable me to get to the safest environment possible.

I had my emergency injection easily visible in my lab.
That way, God forbid, if my coworkers needed to find it quickly, they could.
Get emergency information kit here.
Do you have a practiced plan of action for your Adrenal Insufficiency? If your disease flares, do you know what to do? Discuss this plan with those you trust so that when the situation arrises, it's a routine rather than a crisis.

My plan of action can be summed up in these simple steps:
  1. Increase medicine.
  2. Get to a safe environment, preferably one with low noise and little light.
  3. Make sure trusted people know my location so that I can continue to be monitored.
  4. Rest.
  5. Wake up Clearly Alive.
Let's all strive to remain Clearly Alive.

Displayed in plain sight, just like an AED.
Because in a crisis, I don't want you to have to hunt for it.
Poster can be found here.
Do you have any tips or tricks to add? Has a practiced plan of action helped you with your Adrenal Insufficiency? I'd love to hear from you!

7 comments:

  1. Thank you for this valuable information. In the picture, I see a ziplock bag with emergency items. Can you please list these items?
    Also, I understand that the Solu-cortef is supposed to be maintained at temperatures around 68 degrees. How do you handle that?

    ReplyDelete
    Replies
    1. Hi Debbie,

      Of course! I have three of these kits and they are all identical. One, I carry on me at all times. It's never more than an arm reach away. The other sits at my office desk. The third resides in the desk of my office manager. Previously, the third was hung on the wall in my lab (that's the one in the picture).

      Contents:
      - 2 mL Solu-Cortef Act-O-Vial (NDC 0009 - 0011 - 03)
      - 1-2 inter-muscular needles. The one I'm looking at now states that it's 21G, 1 in, 3 mL but be sure to check with your pharmacist to see which one they recommend for you.
      - Band-aides
      - Sterile Alcohol Swabs
      - Documentation from AIU ( http://shop.aiunited.org/Basic-Kit-GKD.htm )
      - Color instructions on how to inject ( http://www.cah.org.nz/__data/assets/pdf_file/0008/22877/SoluCortefInjection.pdf )
      - Small pair of scissors ( https://www.walmart.com/ip/Sparco-5-Kids-Pointed-End-Scissors-5-Overall-Length-Pointed-Red-spr-39044/43622213 ) <- I added those because I'd rather have coworkers cut a hole in my pants than strip my pants off, and the injection is supposed to be given in the thigh

      As for keeping the Solu-cortef around 68 degrees, I just try to keep it indoors. This is a more critical requirement AFTER the medicine is mixed as the un-mixed powder is less sensitive to temperature changes. However, I still recommend not leaving the Act-O-Vials in garages or cars for an extended period of time.

      I hope that helps! :)

      ~ Amber

      Delete
    2. Recently, I've been thinking I should put Zofran with my kit. I tried to get a prescription, but no pharmacy in my area will order it. They only carry generics, so I didn't get it. Do you think the generic will work as well? I'm like you, the genetic Cortef didn't work at all and I was in horrible shape until I insisted on the actual Cortef.
      Thank you for explaining about the temperature problems with the Solu-cortef. I do not have air conditioning and my house can get as high as 100 degrees these days. Pfizer told me not to put it in fridge, so I've always been nervous about how effective it would be in an emergency.

      Delete
    3. Oh! Yes! Good point! I carry generic Zofran everywhere with me, but that's just in a different bag. I actually have three bags / kits.

      I have my emergency injection kit, which I described above.

      I also have a cortisol pump emergency kit. It has everything needed to change my site if I'm on the go. It also has ample supply of AAA batteries, because I don't ever want my pump battery to die and have no replacement.

      My third kit has oral cortef, dexamethasone, salt tabs, and Zofran.

      Or rather, generic Zofran. My script is for 4MG Ondanestron ODT. I've actually never been able to get brand name Zofran, but the generic has saved me several times.

      Delete
    4. What is decamethosone and why do you use it?
      Why salt tabs and when would you use?
      Since it is flu season, I got prescription for Tamiflu and carry that with me.
      Do you get flu shots?

      Delete
    5. Hi Debbie,

      Dexamethasone is a longer acting steroid. It contains no mineralocorticoid properties, but it is very useful when you need to elevate your base dose just slightly. One dose can last in your system for around 36 hours.

      As for the salt tabs, I have had several medical tests run that prove that my body salt wastes. I cannot hold onto sodium and I am prone to rapid dehydration. Dehydration can trigger an Addisonian Crisis, so being able to supplement quickly with salt tabs has kept me in the safe zone a few times.

      With flu shots, I prefer to remain silent on that issue. That is something you must discuss with your doctor and make the best choice for you :)

      ~ Amber

      Delete
  2. What a wonderful site! Thank you so much for sharing this up to date information / so valuable for me!
    I am currently in hospital recovering from an Adrenal Crisis that I tried so very hard to manage at home. I have learnt so much in finding this site and in watching the Addison Crisis video of Deb. I was so relieved to see someone else experience such similar reactions to mine. I thought I must have epilepsy as well, as these symptoms of crisis are never talked about in the literature.
    I would love to find outotr about Aust Support Groups and stay in touch with the information you share.
    I'm sorry but I don't even know how to post this properly, so I'll add my email.
    A million thsnks - Vicki Godwin
    vickigodwin1@bigpond.com

    ReplyDelete