Sunday, October 30, 2016

Guest Post: The Domino Effect

Yesterday, I shared the words of Des as she retold the story of Deb's adrenal crisis during the inaugural Adrenal Insufficiency Australia & New Zealand Association (AIANZA) meeting. Today, I would like to share the words of Jo. She was instrumental in making sure all Addys remained safe.

Please read her account of the episode on her blog "Living with an Addisonian."


Click here!

Saturday, October 29, 2016

Guest Post: On Advocacy

I've had the opportunity to meet with several different "Addies" over the years, and over the world as well. Wendy was one of the gals I had the pleasure of meeting a few years ago. She graciously opened up her home to me one weekend while I was living in Malaysia.

Due to some of her own adventures, she recently required medical treatment outside of Hong Kong. She went to Australia, where Des, another Adrenal Insufficient lady, graciously opened up her home. During Wendy's visit, the two of them decided to host a party. They invited all the Addies within traveling distance to join them.

Blue butterfly tiaras for the party!

Given the unpredictability of our disease, the party did not quite go as planned. They were visited by not one but TWO separate ambulances as two of the ladies slipped towards an Addisonian Crisis. If you're going to crash into a crisis, you might as well do it in the company of others who share the disease, right? Safety in numbers?

I would like to share the words of Des. She coordinated the meeting in Australia, where one of the crisises was caught on film.

All information and photos are shared, with permission, in an attempt to raise awareness.

A POST ABOUT ADVOCACY 

This whole experience that Wendy and I have had with Deb, advocating for her and taking this lady under our wing has really opened our eyes. We were just really lucky that we were in a position to help her as this is not always easy because of our geography, time, and local knowledge. We were fortunate to have all three things in place for us to be able to help Deb. 
To say that Deb had fallen through the cracks through the public hospital system in Australia is an understatement. She had not only fallen through the cracks but had been left dangling with the weight of all her medical issues about to pull her down into the abyss with no way out. Moving away from the city of Brisbane to a small coastal town on the Sunshine Coast, she needed to find a new GP and specialists. Unfortunately she landed upon the doorsteps of incompetent and uncaring doctors who had no idea how to treat her or an understanding of how her complicated history would put her in danger. Consequently she suffered many crises because she has been unstable because of the stupid stupid treatment she had been receiving from an incompetent Endocrinologist and other specialists over a period of 4 years but had no idea that the treatment was so bad. It was not until she stumbled across two support groups that have enabled her to reach out for help from people who live the disease, I don’t know that she would have survived. 
We all need someone in our corner fighting for us and if family or friends are unable to do this for us, we must reach out among our fellow Addys for help, and not be embarrassed about asking for help. This brings me to the topic of buddying up with other Addys in the area where you live, so you can have someone “have your back”. I know this is not always possible but worth trying for. I am lucky to have now met several Addys near where I live and Deb is one of them. Because this may not always be available to us, it is up to your National AI organisation to start work in this area, by at least providing a set of guidelines about the pathways to good care that you can follow yourself. 
The steps that we followed to help Deb receive good care unfolded after her crisis at my home when we gathered members for a small get together and the swearing in of a new Australian & New Zealand association, as the previous ones folded in both countries. You may or not already know, but we had two of us go into crisis that day, Michelle being so distressed and harbouring a tooth abscess infection that she didn’t know as brewing, also went into crisis. (it presented itself full blown a few days later) Deb was carted off to Nambour Public with her husband and Michelle carted off to Noosa ED. with myself in tow. The treatment was: Nambour pathetic. Noosa brilliant. 
Deb being stable by the time she arrived at Nambour, saw her arrive in a very busy ED, with a doctor deciding as she was stable left the nurse to tell her she can go home. He didn’t even see her, no bloods done, no examination. She had received fluids by the ambulance team but that was the extent of her treatment. Her medical records are there, which indicate that two weeks previously she was admitted through this ED in shock and passing black urine. She has some gastro-intestinal issues that were discovered when she was there, but she was sent home after only one consultation with the Endocrinologist and GI team, with no follow-up appointments made and no idea what to do next. She received a letter in the mail giving her an endocrinology appointment 6 weeks out! And still no news about her GI assessment or appointment. This is NOT good care for someone so ill. 
So it is no surprise that being sent home from the ED just about pulled her down into the abyss, still unstable after the crisis at my house, not knowing where to go from there, Wendy and I went to visit her the next day as we were very worried about her. Over the past month or so we had encouraged her to try spreading her doses out over the day as the dose she had been on for years was a total of hydrocortisone 40mg a day, 20 in the morning and 20 at 2pm! A ridiculous regime to follow and no wonder she wasn’t well! She felt some improvement spreading her doses out 4 times a day and for the first time in years she felt she could achieve small tasks, but she got excited and overdid things a bit too much. She had never received information about stress dosing and got into trouble so much when she was sick. Nobody ever advised her about this and not having the energy to research her own disease, it was lucky that she discovered the groups. 
With all of this she was still not doing well, and it was clear to Wendy and I that given her gut issues she may well be not absorbing or metabolising her oral medication well and the situation was getting desperate. We talked to her about trying subcutaneous injections to see if that helped and it did to some extent, stopping her diarrhoea and nausea. Wendy and I provided her with a few extra Act-O-Vials and small insulin needles that we use because we have pumps. However, in doing this, she really needed to have a GP appointment for follow-up within the next few days because this was new and not prescribed treatment for her. So, I organised a long appointment in two days, with my GP on the coast who I knew would treat her kindly and give her the time. Unfortunately the stress of meeting a new doctor and still being on the edge after her crisis just a few days before she had another crisis in his office and he quickly administered the Solu Cortef injection. It was obvious to this doctor that Deb needed so much help. and while she rested lying down in his office we were able to go through her medical history with him for her, as earlier that day, Wendy had produced a “body map” of her history that was easy to read and understand. He was alarmed at some of the treatment glitches, raising his eyebrows and shaking his head. His words, she really needed a multidisciplinary team to look after her and one specialist who could pull it all together for her. He agreed that waiting six weeks for a follow-up endocrine appointment at the public hospital was certainly not good enough. She had private hospital insurance therefore going private was the way to get better treatment. The trouble is on the Sunshine Coast, not being like a big city, gathering a group of the right specialists may be difficult. 
He was able to eventually find her a good Physician (what may be referred to an Internal Medicine Doctor overseas) at the Noosa Private hospital but she would need to go though the ED for bloods and stabilisation before being admitted. This long appointment ran overtime, but at no time did he rush her out his door, holding her hand and talking to her, telling her to look into his eyes and reassuring her that he would get her the help that she needed. 
The ED at Noosa hospital lived up to its usual reputation as being a very good place to land. She was treated well in there and admitted to the ward after a few hours. Wendy and I were with her until her bed was available. 
She was seen by the Physician the next morning and this doctor, admitting AI was not something he had come across since medical school, listened to Deb, read the “body map” about her medical history and remarked how amazingly put together this was and asked who had prepared it. (Wendy needs to expand this into a business for herself!) After listening to Deb he approved her subcutaneous injections as treatment for her AI, talked about all her medical issues, said he would gather all her records from the Nambour Hospital, remarked that she had fallen through the cracks terribly, and would gather a good team of specialists for her. He said he would also phone and speak to my Endocrinologist who is no longer working on the coast, about the possibility of putting her onto the pump. (If not possible to achieve a team on the coast, he would organise a team for her in a Brisbane hospital) Meanwhile there were some tests that he would organise for her while she was in Noosa. She was so happy when we visited her yesterday saying that this is the first time that she feels she is getting proper treatment, and that this doctor was extremely kind and sympathetic to her. Even though he admitted he didn’t know a lot about AI he was going to learn about it and help her. This is probably one of the most important things a doctor can do for a patient, admit that they don’t know it all, and willing to learn and work with you. Meanwhile we must all try to be the best educated person that we can be about our disease.
  

STEP BY STEP

Pull together your medical history and prepare it in easy to read format. Headings, Bullet point, starting at your most recent history with dates and listing down from there. 
Include any relevant family history (mother, father etc), allergies, surgery, medications.
Source a good GP / PCP. Ask around your area who is considered good. The pharmacy might be able to suggest also.
Schedule a long appointment 
Open the discussion with “I want to find a doctor who can work with me with my disease as I understand I am a very complex patient and I know my own body. If you don’t know about AI, if you are willing to learn and work with me I would be very happy to start there.” 
EDUCATE YOURSELF AS MUCH AS POSSIBLE ABOUT YOUR DISEASE. 
This enables you to hear the alarm bells going off when you are being told something that doesn’t sit right with you. Challenge them on this. 
BE PREPARED 
Arm yourself with little snippets of information in condensed form that you can show your doctor about your disease. Go to your support groups or national organisations and find the accredited information that they have available for patients to print out and keep in their file for when going to the ED or hospital. 
Ask your doctor to provide you with an Ambulance Directive. That is a letter than from your doctor about YOU and your disease and what treatment you need in a crisis. 
DO OBTAIN an emergency injection kit prescription (Solu Cortef Act-o-Vials, needles and syringes) from your doctor, and DO NOT take NO for an answer. You must insist on having this and know how to use it, and teach those around you how to use it. In crisis we may find it difficult to administer to ourselves as we are often too shaky. You must be prepared to act quickly, therefore don’t leave it too late to inject yourself if you are alone. If necessary print out documents from an endocrine society source (give to your doctor) that states all AI patients must carry an emergency injection kit, wear a medical alert bracelet, and a steroid dependent card. 
Take someone with you to appointments or the ED who can stand up for you and insist on proper treatment and care immediately. 
PUBLIC HOSPITAL ADMISSIONS - BEFORE YOU LEAVE
Ask about follow-up appointments - you may be told that a letter will come in the mail with appointment date etc. 
Ask for results of tests that were done while you were there. Obtain copies if you can. It is your right. 
If you feel uncomfortable leaving with no plan put into place about your ongoing care, speak up. 
Make sure you understand all medications you have been given and what they are for. Ask for written instructions to go with you about medications. 
If you have received unacceptable care, and feel uncomfortable about your discharge arrangements, go back immediately to your GP/PCP as your care MUST be ongoing and without delay.
Deb is doing better, and through the combined advocacy of several other Addies, her quality of life shall significantly improve. She has already been switched off of oral medicine and began sub-cutaneous injections of solu-cortef. She is actively pursuing the cortisol pump as a method of treatment to help stabilize her Adrenal Insufficiency.

Deb and Wendy.

Deb and Des.

Sunday, October 16, 2016

ICYMI, AFAA: Depression and Grieving in Adrenal Insufficiency

In case you missed it, Action for Adrenal Awareness released October's video on YouTube. The topic this month was on Grieving and Depression with Adrenal Insufficiency. Kim and Debby shared their insight, along with some very helpful information.


Debby starts out the video by sharing some of the more common symptoms of depression.

Debby shares with us some of the symptoms of depression.
She also makes note that another stage of depression is grief. This grief can cause the loss of friends, and a lack of energy as the new reality of our medication sets in. There is a loss of our former self as we go through this period in which we attempt to learn who our new self is going to be. She reminds us, however, that our new self is still pretty good.

Debby also highlights the four stages of grief: Reeling, Feeling, Dealing, and Healing. Although they sound similar in name, the represent distinctly different phases. Reeling is the stunned and shocked stage. Feeling is where the anger, deep sadness, and loneliness set it. Dealing is where you start to adapt to this new reality and plan for the future. And finally, healing is considered a recovery from the profoundly painful feelings. Healing is not about getting over your loss, but rather about learning to live with it. 

I found the classification of the stages very helpful.
She experienced feelings of sadness, the guilt associated with being unable to fully care for others, and extreme loneliness. But this is where the support groups come in. It is incredibly helpful to meet and talk with others that CAN relate, and the connection is instantaneous.

It is so important to remember that you are never alone. And you are never the only one.

For many of us, it is incredibly hard to distinguish the symptoms of depression from Adrenal Insufficiency. We highly encourage you to speak to your doctor.

Debby hands the video over to Kim, who reminds us again that this is both complicated and hard, but there is absolutely nothing to be ashamed about. Kim reminds us that low cortisol can cause a depressive factor but if this keeps happening it may no longer be just cortisol. Both serotonin and norepinephrine get depleted when chronically stressed. Cortisol does not touch either of those, which can get us into a dangerous loop.

Cortisol can fix the low cortisol. But it cannot touch the low serotonin and/or norepinephrine.
Kim encourages us to be mindful of this loop. Just like we need to replace the cortisol that our bodies are not making, we should replace the chemicals depleted in our brain. Kim follows this up with showing us a visual of the difference between a healthy synapse and a synapse of a depressed person.

The right side has much less neurotransmitters than the left side.
Kim wraps up the video with encouragement. Depression and grieving are both serious and very hard. Please do not feel ashamed. Do not feel like you are weak. Do not be afraid to seek additional help. We understand. We've been through this. We are sharing the things that we have learned and we want to help you.

Do not be afraid to use these references.

Did we forget anything? Please comment below! 
Have a suggestion for a future topic? Suggest it here!

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 this website, 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 is solely at your own risk.

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!

Sunday, October 2, 2016

ICYMI, AFAA: On College and Universities

In case you missed it, Action for Adrenal Awareness released September's video on YouTube. The topic this month was on College and University. I spoke about some of the lessons I learned while navigating college with Adrenal Insufficiency. Although my focus is for college students, there are definitely tips and tricks that are applicable to all.


Tricks for Surviving College or University

  • On Medicine: The timing of your medicine is incredibly important.
    • Do NOT miss a dose.
    • Do NOT run out of medicine.
    • ALWAYS carry your medicine with you.
    • Do NOT be afraid to take medicine during the middle of a lecture.
    • If you notice yourself struggling the same time every single day, try a bump dose of HC 20-30 minutes before.
    • Make sure a few key people know about your emergency injection.
  • On Doctors: Make sure you have a good team.
    • Find a local PCP and establish a relationship with them while you are well to advocate about your disease
    • Check with your current endo to see if they are still comfortable managing you while you are out of state. Otherwise, hunt for someone local.
  • On Social Aspects: Please, just be careful.
    • You CAN have fun, but do plan ahead.
    • If you do drink alcohol, be super mindful of dehydration and do not be afraid to up-dose.
    • Search for good friends who will work to understand your disease. They should not make you feel guilty or less than.
  • On Sleep: It is important!
    • College is famous for having messed up sleep schedules. Try to avoid that!
    • Lack of sleep CAN trigger an Addisonian Crisis.
  • On Scheduling of Classes: Try to schedule your classes around your "good" hours.
    • Do not be afraid to take a small bump dose before difficult labs or lectures.
    • It is better to go slow than overwhelm yourself.
  • On Additional Resources: They are available to you, you just need to ask.
    • Work on developing your "advocate voice."
    • This disease does NOT make you weaker.
    • This disease is NOT something you should be ashamed of.

Truth be told, during all of college and high school I was ashamed of my Adrenal Insufficiency. I viewed it as something that made me "weaker" or "less than." I tried to hide my disease and downplay it's severity. I was in denial.

This is not a helpful mindset to have. This disease does NOT make us weaker. This disease is NOT something to be ashamed of. However, we must be mindful of our disease and take pro-active measures in order to manage it successfully. But in taking those pro-active steps, we are able to remain Clearly Alive.

Did I forget anything? Please comment below! 
Have a suggestion for a future topic? Suggest it here!

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 this website, 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 is solely at your own risk.