Adrenal Insufficiency and Sensory Sensitivity: A Review of Flare Audio Calmers

Ever since I became adrenal insufficient in 2014 sensory issues have been a struggle. This includes light, touch, smell, and probably the most problematic for me is sound sensitivity.

A quick google search uncovers several articles and studies concluding that loud, abrupt, or certain frequencies of sound increase cortisol production in non-adrenal insufficient people. So, what happens to a body that can’t make this additional cortisol? For me it was fatigue, irritability, physical pain, and extreme generalized discomfort nearly every day. It was like someone took a cheese grater to my nerves and I felt beaten and raw, like I needed to escape from this cacophonous sensory nightmare.

To combat this problem, I would sometime wear headphones around the house or the disposable orange squishy ear plugs. These worked well preventing this sensory overload. I noticed I was much calmer, happier and more productive when I was listening to music or blocking out the sounds completely.

However, I live in a household of 5, so tuning out my entire family was frustrating for them. It wasn’t fair for them that I was tuning out completely. So, I stopped using these strategies, and the sensory sensitivity was a constant burden once again. There had to be a better way.

I’d seen some ads online for an earplug type product that claimed to reduce stress from harsh noise. However, there were several products on the market that had similar claims. It was overwhelming weighing the many options. I finally whittled the decision down to 2 products: Flare Audio Calmers, and LOOP earplugs.

I was intrigued by the Flare Audio Calmers, because they did not reduce all sound like the LOOP and other types of ear plugs do. The calmers would still allow me to hear, but according to their website, it reduced specific frequencies that are stressful to our nervous system.

I consulted my support group of nearly 5,000 adrenal insufficient women for their opinions. Someone suggested the night time version of the calmers, saying that they were a softer, more comfortable silicone, however I also liked that the regular, daytime version of the calmers had a mini size that was available in transparent silicone, making them very discreet. So of course, I ordered both versions!

Flare Audio is based in the UK, and as I am in the United States, it took 2 weeks for my new ear plugs to arrive. I was very patient and very ready to get some relief from this sensory torture I was feeling every day.

SO HOW ARE THEY? DO THEY WORK?

In a nutshell, yes, they work! I tried the Sleep Calmers first. I found them to be comfortable and easy to insert provided you are looking at the instructions the first time. I should mention that I normally wear orange foamy ear plugs to bed every night, so my ears are not unaccustomed to earplugs. I wore the Sleep Calmers to bed that night.

I am a side sleeper and I did wake up at some point during the night to remove the earplug from the ear I was laying on. I should also note that I wear a cortisol pump, so I can only sleep on the side where I don’t have my infusion set. If I could have just rolled over to my other side, I probably wouldn’t have had the discomfort from the ear plug. I left the other plug in and slept well the rest of the night.

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Flare Audio Calmers for Sleep. Pictured in white.

Because I’m used to wearing disposable ear plugs at night that block out noise, I didn’t really like that I could still hear with the calmers. I could still hear my husband and my dog snoring. So, for actual sleeping, I think I’ll stick to my orange foamy earplugs. However, I did really like wearing the Sleep Calmers around the house.

I wore the Sleep Calmers the next morning and noticed that some noises just sounded…different. Though I could still hear them, they seemed less harsh. Like when I turned on the blender to make my breakfast smoothie. It was loud, but that harsh edge wasn’t there.

I noticed some noises like dishes clattering, my husband commented how loud it was (he does not have sensory sensitivity) but it didn’t seem to bother me.

I had a yoga class that day and decided to try out the clear Calmer Mini’s since they would be small and discreet.

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Both the Sleep (white) version and the Mini (transparent) version.

I noticed when listening to my car stereo. Though I enjoy my music, there was a harshness that was no longer there. The yoga class itself was a very calm and peaceful yin class, so there were no opportunities to demonstrate the difference with the calmers other than the car ride there and back.

I did notice that by that evening, my ears felt uncomfortable with the calmers. After 24 hours of continuous wear, that is not surprising. So, I would advise against 24/7 wear. Take them out when things are quiet and calm to give your ears a break.

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Wearing the Mini Calmers. You can hardly see it.

I wore the Minis again for Easter. They were not noticed at all and were great for toning down kitchen noise while still allowing me to converse with others around me. Definitely a win! However, after wearing them for the entire day (12 hours) they were beginning to tickle my ear in an unpleasant way that was making me twitch. So again, while they are not uncomfortable, I personally don’t recommend extended wear for 12 hours or more.

WHAT ABOUT TINNITUS?

I want to just note here that there are different types of tinnitus. I do not know what type I have, but it’s fairly mild and not debilitating. The Calmers did not “fix” the tinnitus, but there was a slight decrease. However, it may make a more dramatic impact if you had more noticeable tinnitus. I can’t really come to a solid conclusion on this one. It helped, but only very slightly, however I am not particularly bothered by my tinnitus in the first place.

BOTTOM LINE:

I like using the Flare Audio Calmers, and they are helpful for those with sensory sensitivity. They do not block all sounds, but only the harsher frequencies. I like that I can still hear the people around me and have not experienced sensory overload since I got these. I found that I didn’t really like sleeping in them, but I do prefer the Sleep Calmers for daytime use. The regular Calmers were discreet and ideal for wearing in public. I found both versions to be comfortable when worn for a reasonable amount of time but did bother me if I wore them 12+ hours.

I like wearing the Sleep Calmers around the house, especially in the kitchen where I experience most sensory discomfort. The regular Calmers are great for public places you anticipate encountering a lot of noise. I would recommend Flare Audio Calmers to others experiencing sound sensitivy and if I had to pick only one version to buy it would be the Sleep Calmers, though I do like having both options available.

This is my own completely honest review. I get absolutely nothing from this review, and Flare Audio did not ask me to write this. This is just my opinion. I hope it can help some one else going through sensory issues! ❤

Calmer®

Homeschooling With Chronic Illness: Yes You Can!

Juggling motherhood and chronic medical conditions is challenging. I am a mother of two. I also have two types of cancer. I’ve lost my thyroid and adrenals to these cancers. The battle continues, and yet so does life. I can’t put my kids on hold when I don’t feel well.

Around 2017 I started considering homeschool. At the time I had a kindergartner and a first grader, and the kindergartner was not adjusting well to school. This caused me a great deal of stress and worry which is particularly awful for people with adrenal insufficiency and cancer. At the time I struggled with self doubt about the decision. Was I qualified? Was I healthy enough to teach my children? Would I be hindering them socially and academically?

An unexpected plot twist…

Flash forward to 2020. COVID caused the schools to shut down. For the first two weeks the school was scrambling to make a plan. Meanwhile, I happened to have a homeschool binder ready to go that I had been using every previous summer and spring break. 

And so it begins…

I updated our curriculum and off we went.
Homeschooling was a blast! We had so much fun learning through activities, reading, watching documentaries and (educational) YouTube videos together. We went on nature walks and journaled. Rode bikes, had a picnic. Made our own neighborhood maps and learned how to navigate. We found examples of math at home and in nature. We started a garden and learned about the environment. Suddenly, education was fun. This was nothing like public school, learning wasn’t work nor was it boring. It was a family activity that we all enjoyed. This was eye opening for all of us. 

A note…

I want to pause here and say, we had a very good public school. Our decison to homeschool was not due to any failings on the part of the teachers or staff. No one could have been prepared for COVID. There was only so much any of us could do in this situation. The teachers went above and beyond the call of duty, and I’m forever grateful for the influence they had in my children’s lives.

Distance learning…

After those first two weeks, the school began their distance learning program. We were required to participate or risk a failing grade. The fun was over. Now we were trying to figure out a barrage of emails, links, logins, and apps. Keeping track of the assignments posted in various places, logging in to numerous apps, filling out online worksheets and forms made learning drudgery again. All of us were more stressed and frustrated than ever. Virtual learning was particularly problematic for my daughter. I would watch her hyperventilate and shut down. I emailed her teachers asking how they normally handle her frustration with school work, and from their response I got the gist that this was actually normal. That this is what school was for her. This realization broke my heart.

Why? Why did it have to be this way? Why does learning have to be frustrating and stressful? We were having fun learning just a few days before.

We did our best to struggle through virtual learning. I didn’t want to give up this close to the end of the year. 

Except it was sucking the life out of us. Myself in particular. For one assignment I counted that we had to use 6 logins and/or apps just to complete one assignment, in one subject, for one student. There were so many tabs open that we had to navigate back and forth. The work itself was also a challenge and turning in assignments was usually a multi-step process as well. At this point, I was the one in tears. 

A painful reminder…

This forced me to relive memories of my own public school experience with undiagnosed ADHD. I was singled out and bullied. More so by my teachers than the other students. Rather than recognizing my learning style differed from the other students and helping me break these overwhelming assignments down, I was punished. They found various ways to place me in isolation, whether it be a study carol, a small room, the hallway, or a masking tape square around my desk at the back of the room. Obviously none of these things help a student learn. It only serves to crush their spirit and extinguish their love of learning. Though the school has improved greatly at accommodating special needs students in the 20+ years since I was a student at the same school…I knew I could not let this happen to my children. I had the opportunity to give them an individualized education. 

Every family is different. Distance learning did not work for us. We needed to go back to the method that was working– homeschool. 

Making the leap…

Even though I was confident this was the best choice for us, I was still nervous. Those doubts popped back up. It’s just so counter cultural to withdraw from school. We are so accustomed to public schooling that we can hardly fathom education without it. Researching and talking to experienced homeschool moms helped ease my fears, and I took the leap…
It felt just like that, a leap. Jumping right into unknown territory. We were really doing this!  

We went back to our homeschool curriculum and focused on having fun learning from the world that was all around us, fostering independence, and teaching life skills.

Homeschool for us means hikes, gardening, experiments, building things, art projects, raising insects, making yogurt, drawing maps, writing codes, riding bikes, having picnics, doing yoga, and so much more!

Traditional school teaches them that learning is work– boring. Once my kids began to realize that learning could be fun, something changed in them. They wanted to learn all the time. Learning became our lifestyle. They willingly chose to learn as often as they could. I was not expecting this at all. 

Things were going well, we were back on track, but homeschooling with a chronic medical issues is not all sunshine and rainbows.

Homeschooling when you’re sick…

Because I have adrenal insufficiency, when my body is dealing with any illness or infection it is more serious than dealing with a few symptoms. It starts before I show any signs of an illness. I start to slow down, like a dying battery. The fatigue builds the more the infection grows. In a few days I can barely sit up, it becomes harder to do basic things like get dressed, make myself food, get water. I was in pain, that was getting worse by the day. At the same time my patience was wearing thin and my brain was getting foggier. I was teaching while curled up on the couch.

I went to an urgent care and they were too distracted by my cancer diagnosis to consider that perhaps I had an ordinary illness. I got no help and went home still in pain. 

A few days later, the pain was much worse. I would teach in the morning balled up on the couch, then once our lessons were over,  I would curl up on our hammock while the kids played outside. We would also read together in the hammock. I was struggling, but still homeschooling. 

I was sick, struggling with pain and fatigue. My adrenal insufficiency was flaring due to an underlying infection. I would teach from the couch then move my sore, tired body to the hammock so my kids could play outside. Chronic illness mamas find a way.

Finally, I couldn’t take the pain, and this time I was able to get to my primary doctor instead of urgent care. My doctor could easily see I had a kidney infection. I was given a round of antibiotic and felt increasingly better each day. 

You can do it Mama…

It is tough when your health is fragile. It’s hard to homeschool when your health makes you bed bound, but its not impossible. You can read or have them read to you. Even if your kid is too young to read, have them “read” you a picture book. Watch documentaries and videos together from the couch or bed. Sing together, play a simple game like go fish, war, connect 4, guess who. You can make this work!

Life skills are a win-win…

I emphasize life skills because I’ve always been a chronic illness mama. Even when my kids were toddlers I needed them to help out. Teach them everything you can. Have them help you with a chore at first. At 2 years old my son was helping me unload and load the dishwasher. Of course he couldn’t do it by himself back then, but we all start somewhere. It’s okay if they do a terrible job at first. They are learning. They might make a mess on the floor. Show them how to grab a towel and clean it up.

Kids love to help, and it builds self-esteem.

Don’t micromanage or criticize how they do it. Make peace with the imperfection. All of this will come in handy one day when you feel like utter crap and your kids can help with the basic household chores and even bring you food and water when you’re too sick to get out of bed. 

It seems strict, like Cinderella or something. Don’t be fooled. You’re actually building their confidence and self esteem. Praise them for their effort. Let them know how much they helped you and how much you appreciate them. Tell them a family is a team and it’s good to help each other out. Tell them you are proud of them and that they should be proud of themselves too. They will love being a capable, contributing member of the family. They will love knowing they are valued and important. 

You are doing great…

Before you beat yourself up about all the ways you think you and your illness are hindering your child, stop and think of all the ways you’re helping them. They see you struggle and never give up, they learn perseverance. They see your hard days, they learn compassion and empathy. Maybe you can’t physically do or provide all the things the other parents can, instead your child learns to be content and grateful. 

He brought me some flowers when I was sick in bed. Dandelions wither away, but the love you share with your children does not.

You are not failing! Even with your imperfections and mistakes, you are the perfect mama for your kids! You CAN do this!

Hang in there mama!

-Michelle

4 Years with the Cortisol Pump

4 years of cortisol pumping and I can hardly believe how far I’ve come. I’m not superwoman, nor will I ever be, but it’s a night and day difference from my life pre-pump. I am an active and functional human. I can exercise- I love yoga and enjoy walking a couple of miles with my husband every evening. I have the energy to be mom. I can do activities with my kids, we can do craft or building projects together. I can ride bikes, hike and play sports with them. Recently we decided to homeschool going forward, because it was actually enjoyable while school was closed. I feel more myself and more alive than ever. My weight is healthy and stable, even my hair and skin has improved in the last 4 years. Of course there is room for improvement, I still need more rest than most non-adrenal insufficient and non-cancer having people, and I have to be careful about not overloading my schedule. My health requires more care and upkeep than your average person, but I am so glad I’m not where I used to be. This extra work means I can live an active, happy life and make as many memories as I possibly can.

Morning yoga.

On June 10, 2016 I took my steroid pills that morning like normal. This was almost 2 years after becoming adrenal insufficient and in that time, I had tried 3 different oral steroids and every dosing schedule you could imagine. Nothing seemed to bring significant improvement. I found that my health was steadily declining. None of the doctors on my medical team were interested in finding out why the oral steroids weren’t helping. They were too busy shaming me for taking more than the suggested dose. They acted like I was supposed to just accept that I was always going to be a sickly person, too weak and tired to get out of bed.

4 Years Later

It hurt to see people live life around me. My husband, my children, I had no energy for them. I would see elderly people jogging, biking, living more active healthy lives than I was at 27. I unfollowed and unfriended nearly all of my peers on social media because it was devastating to see them enjoying life while I was wasting away.

However, I did not have it in me to give up, to fall into despair and roll over and die. I had to get better, somehow. I knew of a small group of women that used cortisol pumps to manage their adrenal insufficiency. Their lives were so impressive, they were smart, resourceful, they had careers, family lives, they exercised, some of them could run and play sports. As I lay deteriorating day by day, their lives gave me hope- maybe I could do that? Why not? I would fight to live again.

Getting a pump was an immense challenge. I had no one in my corner no one to help, no doctor to facilitate. I had to learn on my own. What pump do I get? How do I program this thing? What is an inset? What other supplies do I need? How do I operate this? And how am I possibly going to afford this? This journey to get the pump was long, and frustrating. I had to stretch the limits of my foggy low cortisol brain. I had to visit numerous doctors. I got told no a lot. I was ridiculed. I had to jump through hoops. I had to humble myself and ask friends and family for financial help. There were so many road blocks, and when I didn’t see a way around I just prayed. Eventually everything came together.

When I got my first pump, I was simultaneously overjoyed and terrified. I was standing on a precipice ready to leap. This would either give me my life back, or it wouldn’t work and this would a be a giant, heart-breaking waste of time and money. I had to take the leap to find out.

The cortisol pump is not miraculous. It won’t give you superpowers. Best case scenario, you can hope to feel as good as a “normal” person. A normal person still gets tired, they still get sick, they’re cranky sometimes. What I’m saying is, normal is not the same as perfect. Far from it. But if you’re reading this thinking to yourself that normal sounds like a dream come true, then the pump might be what you’re looking for.

My improvement was slow, though I was delighted with what little progress I saw. I was so tired and weak before that the little improvements seemed huge. It was about 6 months before I could sleep though the night. It took about a year before I was fully functional. Month after month, year after year, I steadily improved. Its an ongoing process don’t expect to plug in your pump and be all better. It takes time, hard work, adjustments, and experience.

Time- You will get discouraged at times because progress is slow and you still can’t do the things “normal” people do. Try to focus on the improvements you’ve made, not the things you still can’t do. And for goodness sake, don’t compare your journey to your friends’ on social media. You are only seeing their photo worthy moments, they are all far from perfect, and rest assured that behind closed doors they have problems you wouldn’t want to deal with.

Hard Work- Recovery took unfathomable work on my part. The pump doesn’t fix things on it’s own. It makes it possible for YOU to fix things YOURSELF. I had a long journey ahead of me once I started pumping. I had steroid weight to lose, atrophied muscles to strengthen, weak lungs that needed conditioning, comorbities to manage. It took effort and discipline to get up and exercise every day. It took patience to start slow and easy and not push myself into an adrenal crisis. Consistency was key. Just do one little thing every day, and most importantly- DON’T STOP. Along the way I discovered other health problems. I seemed to react to gluten, though none of my doctors wanted to test me for celiac, I went on a gluten free diet in fall 2016 and was amazed at how much my health improved. I had some surgeries that needed to be done, in 2017, 2018 and 2019. Each one was tough, but allowed my health to improve a little. I also discovered I had problem with recurrent systemic infections. This required another dramatic diet change. None of these things were easy. This is my blood sweat and tears we’re talking about. The pump didn’t magically make me better. It gave me the strength to WORK for it.

The pump is only a tool, HARD WORK and DISCIPLINE is what changes you.

Adjustments- I didn’t start off with a knowledgeable pump doctor. So I used a lot of trial and error to program and adjust my basal rates. I don’t recommend this at all. The pressure of being your own endo is crushing. I had very little cortisol testing the first 2 years. A series of 4 blood draws a few months after starting the pump, which didn’t do a lot of good because I had no doctor able to interpret the results. I had to figure it out myself and decide what basal adjustments needed to be made, which was not all that effective. I got saliva testing some time in 2017. There were more samples collected than with the previous testing, but again I had no doctor able to interpret the results. All I could glean from that testing was that I wasn’t as horribly over replaced as I had been led to believe. In 2019 I had my first 24 hour cortisol curve. This test was brutal. I had an IV line placed and blood drawn ever hour on the hour for 24 hours. This meant I had to be in the hospital and could not be away from my hospital bed for more than a few minutes or I would miss the blood draw and invalidate the test. This was also traumatic on my veins despite having an IV. It turns own veins do not like having the blood literally sucked out of them with a syringe. When the test was done, my IV was barely holding and my veins were so inflamed you could see the red branching up my arms through my skin. However, the results I got from this test were amazing! For once I had a doctor that knew very well how to interpret these results. She knew how to adjust my basal rates accordingly and this ordeal resulted in a well optimized basal program with more energy and fewer milligrams. This was a major milestone in my pump journey. Don’t for a second think you can “borrow” a basal program, from a research study or another pumper and think this going to give you amazing quality of life. Basal programs need to be tested and tailored to the individual. Without that individualization, you are not getting the full quality of life possible from your pump.

Painful, red, inflamed veins near the end of my 24 hour cortisol curve.

Experience- There are lessons you learn about cortisol pumping that no doctor can ever teach you. Somethings you only learn with experience. One of the first lessons I learned is just because your pump can bolus many milligrams- doesn’t mean your infusion site can handle it. Boluses are necessary, but large boluses can stress the site. In time, I realized that any boluses more than 5u are best given as an injection. I noticed how my body reacted to stressors, and realized that there were certain signs and stressors that ALWAYS required a bolus. I noticed that a small bolus before the symptoms started was more effective than a large bolus after I was already feeling like crap. Learning proactive cortisol management was another turning point for me. I had the opportunity to try various models of pumps over the past four years, and I’ve learned the pros and cons to each, and what works best for me. I have learned about infusion sets, what types work best for certain body types and places. What areas insets perform best, and the conditions that cause them to fail. I learned I had a lot less bad days when I stopped ignoring leaky or bruised insets and replaced them at the first hint of failure. I leaned that tubing will clog if left exposed to air when disconnected or reused for too many days. That these clogs don’t always block the line bad enough to set off the pump’s alarm, but they do block delivery enough to make you feel crappy. I learned that site failures can take days to recover from, and low cortisol often leads to even more site failures, as does running high rates, creating a vicious cycle. I learned that supplementing with subcutaneous cortisol injections can help stabilize my adrenal insufficiency in these situations. I learned that basal programs are not some static, set-and-forget, that my body’s cortisol need changes based on circumstances. That a body in stress (or illness or pain) requires elevated and flatter “shape” (picture a line graph) of cortisol delivery, whereas a non-stressed body needs something more like the standard circadian rhythm shape. And depending on where you currently are in that spectrum between stressed and non-stressed, is how much your cortisol need will resemble one of these two shapes there are endless variations, and this is key to remember when weaning your dose from illness, injury, or surgery. Currently, I am still learning how to tolerate the summer heat. Which pumping strategies are most effective and what other non-pump strategies can help with heat tolerance. The point I’m making here is you never stop learning, and somethings you can’t just be told, you learn by living through it.

Cortisol pumping is not glamorous, convenient, or easy.

There are not words suitable for how grateful I am for my cortisol pump and how dramatically my life has changed since starting this delivery method. There are days I’m frustrated and I hate being poked with needles and having bumps and bruises, there are times I wish I didn’t have to wear a medical device and I cry and think it’s not fair. But I know my pump is a blessing, and I would never have made it this far without it. I want everyone to know that there is hope. You are not doomed to suffer in silence. You can improve your situation. It will not be easy- ever. My life is not easy now, even 4 years into it, but it’s worth it. Its worth every tear, all the pain, all the frustration, it is 100% worth the fight. Don’t give up!

-Michelle

How Do I Know When to Reduce My Stress Dose?

A question I see often in ALL of the adrenal insufficiency support groups groups is, “How do I know when to reduce my stress dose?” Here is how I know:

About 3 weeks ago I injured my back. I’m prone to annular tears between my lumbar and sacral spine. I was in a lot of constant pain and could hardly move. So I had to stress dose. (Double my normal dose, but as a “sick” profile NOT doubling my normal basal program.) I couldn’t afford the $200 self pay for the chiropractor, so I decided to treat it with CBD and yoga. It was very painful and difficult to do yoga when it hurt to move, but it was also effective, so steadily it has gotten better.

So now here I am back to my “normal”, which does include some back pain, but manageable. I’ve been on my 60mg profile for this whole 3 weeks. Seems like a long time, but I have certain signs I look for to know when it’s time to reduce. I’ve found over the years that if I drop my dose down too soon or too quickly then I sabotage myself and make the whole process much longer and more challenging. Even with my stress dose I was feeling exhausted, not a whole lot of appetite, and I was feeling overwhelmed with all the tasks piling up around the house.

Things have been slowly improving and I started to wonder when it was time to reduce the dose. Today I saw ALL the signs. Before you reduce your dose from an injury use this checklist:

**NOTE: This only pertains to stress dosing. Do not change your daily replacement dose based on this criteria. Please discuss all dosage decisions with your doctor.**

1. Pain is well controlled.

I’m still taking CBD twice daily and doing yoga a few times a week to keep my back stretched and strengthened.

2. Energy is good.

I had a very productive day and checked everything off my to do list for once. I cleaned up the house, did laundry, baked, even had time to read.

3. In control.

As in not overwhelmed or frustrated.

4. Appetite is good.

I have been more hungry today than in the last week. More than normal hungry, so that’s a big clue.

5. Waking up earlier.

I try to be out of bed by 8, but on pain days that’s a struggle. I know I’m feeling better when I’m out of bed on time with no issues.

It was pointed out by another knowledgeable cortisol pumper that one thing NOT on my checklist is weight. I do not use my weight to determine when to decrease my stress dose. Fluctuations in weight can be misleading and sometimes can be due to water retention from being less active while sick or injured, or weight gain can be from…not sure the polite way to say this…being full of poop. Its not uncommon for people to get a little constipated while sick, on pain medications or antibiotics. Antibiotics can kill off intestinal flora which can cause some GI upsets long after whatever infection caused you to need the antibiotics in the first place.

Sadly, all too often I see people with adrenal insufficiency cause themselves so much unnecessary suffering because they think they look puffy, or their scale went up 5-10lbs, or they’re just afraid of possible weight gain. They disregard their current quality of life and begin a difficult and sometimes traumatic steroid decrease too soon. I’ve been guilty of this myself plenty of times, enough that I’ve finally learned my lesson.

I hope this helps someone out! It always feels like a gamble deciding when to reduce. Sometimes I think steroid guilt drives us to cut down too soon and we suffer longer.

**NOTE: This only pertains to stress dosing. Do not change your daily replacement dose based on this criteria. Please discuss all dosage decisions with your doctor.**

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Extreme Cortisol Pumping: Pumping During Surgery

A few days ago, I had my 10th surgery. This one was different as opposed to the previous nine. For the first time I was permitted to wear my pump during the procedure.

So how did it go?

This was a fairly quick, laparoscopic abdominal surgery. Patients without comorbidities are usually back home in a few hours. Since I have adrenal insufficiency and some signs of pheochromocytoma, they did keep me a little longer as a precaution. 

Speaking of precautions, if you have adrenal insufficiency you MUST speak to your surgeon, endocrinologist and anesthesiologist about your steroid plan for surgery. Everyone needs to be on the same page. I can’t tell you how many times I’ve heard adrenal insufficient patients say, “oh the anesthesiologist knows what to do” DO NOT EVER MAKE THAT ASSUMPTION! They do tend to keep solu-cortef in the operating room, but that doesn’t mean they will dose it correctly. Some anesthesiologists deviate from the standard of care and come up with their own plan using less steroid. They think they’re doing you a favor, when really they are unknowingly endangering your life and hindering your recovery. DO NOT LEAVE THIS UP TO CHANCE! Make sure you’re on the same page!

As soon as surgery was mentioned, I made my concerns clear. I knew there would need to be special precautions because of the risk of adrenal crisis or hypertensive episodes due to pheo. I spoke to my surgeon and endo about this as well as two anesthesiologists. I had to have more tests than the norm in order to be cleared for surgery. I had to have any possible pheo activity blocked by taking blood pressure medication for a couple months. At this hospital they don’t assign an anesthesiologist until the night before the procedure. This makes communication a challenge, but by the time I actually met her, pretty much everyone including the nurses had already heard about my steroid plan and pheo concerns. When I discussed it with her, she had already heard my plan and was thankfully in agreement. I would receive 100mg of solu-cortef before and after the procedure and keep my pump running.

https://www.addisons.org.uk/files/file/4-adshg-surgical-guidelines/

This is where I made a mistake. I planned on running a straight 10mg/hr during the procedure. However I forgot to program that profile into my pump. I programmed it in pre-op and realized my settings only allowed me to go as high as 8mg/hr. I didn’t want to edit my settings at the last minute, so I programmed 8mg/hr. That would have worked just fine except I FORGOT TO SWITCH OVER TO THAT PROFILE. Yes, it is all well and good to program a profile, but you have to actually “run” said profile for it to work. Oops! So during the procedure I was running my normal every day basal program of 30.2mg/daily. 🤦‍♀️

I woke up being wheeled into recovery. My abdomen hurt so bad. They gave me IV pain medication, but the relief began to fade after a couple minutes. They gave me another dose. Then I watched the nurse give me 100mg of solu-cortef. 15 minutes later I was moved to a regular room. That’s when I realized there was a problem. The IV pain meds had worn off already. My pain was uncontrolled. I felt nauseous, but the nurse would not give me any oral pain medication until I ate something. I had a couple spoonfuls of pudding and felt sick. I was given IV zofran with minimal effect. Still sick. Every IV medication I’d been given seemed to metabolize way too fast. This has always been the case for me, and it’s the main reason I had to switch to the cortisol pump to begin with. 
There’s a familiar and unpleasant feeling I get when my cortisol isn’t sufficient. It’s an uneasy, almost panic feeling where I’m keenly aware that something isn’t right and I’m increasingly desperate to find relief or escape. It’s more like a primal instinct, “Something is wrong, help me!” I’ve unfortunately felt this enough times to realize it was cortisol related. I realized then my pump was still set on the measley 30mg profile. I immediately switched it to the 8mg/hr profile that I had programmed in pre-OP. The problem is it takes a while for pump rates to build your blood cortisol level. For whatever reason my body did not keep those 100mg IV solu-cortef boluses in my system very long. So I had to suffer while my rates caught up. Meanwhile the nurse had given me a couple doses of pain pills, and IV phenergan. Phenergan only helped the nausea for 5 minutes or so, but thankfully it made me extremely sleepy. I was able to sleep through the misery and give my pump some time to do its thing. A few hours later the nurse came in to check on me, by then the pain meds were working and my pump was kicking butt. I was still pretty knocked out from the phenergan, but I felt well enough to get dressed and go home. My nausea was gone and my appetite had returned. Yay for proper steroid dosing!

Friends, I can’t tell you enough how much sufficient steroid dosing will make or break a situation. Especially a high stakes situation like a surgery. It’s amazing how fast I went from utter misery in the hospital, to eating a sandwich at home. Steroids ya’ll! They’re a big deal! I stepped down to my 84mg/daily “sick” basal profile and kept it there until late evening. Note: your ability to lower your stress dose will be a case by case situation and depends on what type of surgery you had, how long it was and how invasive it was. Pain control is a major factor. Stay on top of your pain medication schedule. Do not let your meds lapse or try to suffer through it. This will increase your body’s cortisol need, hinder your ability to taper your steroid dose, and potentially prolong your recovery. You need sufficient steroid dosing to get pain under control and you need your pain meds to keep your cortisol need under control. They go hand in hand, don’t skimp on one or the other. 

Quick PSA: When you’re running high rates. YOU WILL need to change your inset more often. Pumping during surgery and recovery sounds pretty convenient compared to stress dosing with pills, and it was, but what I did not mention is all the stress that kind of volume puts on an infusion site. My site was leaking by bed time, which I totally expected to happen. This is EVEN MORE true if you run 2:1 dilution ratio in your pump because you are pumping twice the volume than those on 1:1 ratio. So yes, stress dosing and sick dosing with the pump is easier and more effective than pills, but DO NOT NEGLECT YOUR SITE! Don’t wait for it to start leaking either! When you’re ill/recovering your body needs cortisol the most, this is not the time to wait around for a site failure! I’ve changed my site DAILY while recovering from this procedure.

I’ve had 2 previous surgeries as a pumper, but the medical teams for those procedures were not familiar  with, or keen on the idea of pumping during surgery, and I didn’t push them for it. After my experience pumping during this latest procedure, I am going to push for my pump every time. Infection risk is minimal, it’s less than that of the actual surgery itself. The continuous delivery of the pump is ideal for recovery and superior to IV bolusing dosing only, especially since hospitals seem to think bolusing once every 8-12 hours is going to work fine. Its miserable. Continuous delivery is where it’s at! One day they’ll get with the times I hope.

At the time of writing it’s been nearly 48 hours since my surgery. I’m back on my normal profile plus a 200% increase (double dosing). My energy is good and my pain is well controlled as long as I keep up the pain medication schedule. My biggest problem at the moment is remembering not to over do it. I’m tempted to clean house, go on a walk, etc, and I dont feel like resting like I should. Steroid dosing makes a world of difference, and the pump makes this a much smoother experience. Just don’t neglect your infusion site or your pain meds! Happy healing friends!

❤Michelle

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Negativity Ends With You

Negativity is like a disease. It’s highly contagious. It wants to spread and grow. It will steal your joy then find a new host to infect. You have the power to stop this epidemic! The negativity can end with you! You are in control!

Lately, when negativity creeps into my life, I take pleasure in squashing it. How do I do that? It’s easier than you think. When you experience life’s minor upsets and inconveniences, resist the urge to complain about them. Do not repeat that negative experience. Protect your happiness and don’t allow negative experiences to take up space in your head or anyone else’s.

1. DO NOT COMPLAIN.

I honestly did not realize this, and maybe you didn’t either—you do not have to tell anyone about every little thing that happens to you. The driver that cut you off in traffic, the inconsiderate shopper that blocked the grocery aisle, the cashier or receptionist that had a bad attitude—no one needs to hear about these things. It only spreads negativity like an uncovered sneeze. You wouldn’t knowingly give your friends and family a cold, so don’t infect them with negativity either.

This doesn’t mean hide the things that hurt you. Human beings need emotional support for life’s disappointments. If something big has got you discouraged or worried, we are made to help each other. Did those minor inconveniences hurt you? Of course not. Don’t let them steal anymore of your time and energy.

2. FIGHT NEGATIVITY WITH GRATITUDE.

The other day I encountered a rude salesperson, and I complained about her. I actually took the time to call the company and make a complaint about her. After I ended the call, I realized how ridiculous I was being. I let this insignificant interaction steal my joy while I wasted my valuable time finding the phone number, going through the automated menus, sitting on hold, then making my complaint. Did it make me feel better? No, it definitely did not. I was only more annoyed by the end of the call. All that time I spent stewing in negativity I could have spent being happy, but instead I wasted it.

So how does one prevent negativity from taking up mind space? One word—GRATITUDE!

What could I have done differently in that situation? If I had it to do over, first I would have prayed for that salesperson. Then I would have been grateful for the nice sunny weather, my daughter (who I was with at the time). I would have been grateful for my health and the ability to drive (we were on our way to an appointment). Then I would have put on some music and been grateful for some jam time with my kiddo. That would have made me feel much better than complaining.

Maybe you’re reading this and you think it’s a bunch of crap, more “positive thinking” mumbo jumbo. No, what you need to realize is that YOU ARE POWERFUL. You are in control of how you react to a situation, and you always have the option to choose joy. Let the negativity end with you and help create a happier world.

Love Each Other

As humans, we often have difficulty loving each other. We each have our own capability and capacity to love. For most of us, we can only give love to the extent in which we’ve been given. Jesus calls us not to love each other as humans love, with limited capacity, but in the same way he loves us– infinitely.

Woah hold on– we human beings are supposed to love the same way as the Son of God, who is God Himself? Is that even possible? For a mere mortal, no. For an everlasting soul, yes. To do this we must begin letting go of our worldly lives. I say “begin to” because no one can do this with one simple decision. It is a process of giving and receiving. Giving—laying down your mortal, worldly life for God. As we rid ourselves of the worldly clutter piece by piece, we receive more and more of the love He has already lavished on us. God never changes. He’s always been there offering overwhelming, unfathomable love to you, but we are limited by our own willingness to receive it.

The more love we receive from God the more we are able to give to others. His love transforms us, it grows us. As long as we are willing participants in this dance of giving and receiving, we continue to grow. Love overflows from us and begins to flood into the lives of others. It might start with friends and family. Soon the flood runs into the lives of complete strangers, then it washes away our enemies, leaving friendship in its wake.

It doesn’t stop with people; we begin seeing love and beauty more and more in our world. We are transformed into conduits of divine love. The love of heaven flows through us to reach a broken and hurting world. The transformation continues as long as you are actively giving and receiving, until the day we give up our last worldly possession—our bodies. If we’ve followed Jesus’s example, we’ve spent a lifetime preparing for what comes next.

I suspect somewhere deep down in our souls, we already know exactly what happens. The vessel containing us on earth is no more. No more to give and everything to receive. Our everlasting soul reunited with God who is LOVE. With no remaining barriers, we are immersed, consumed by God– divine love.

In Memory of Rebecca Castile. ❤️

Buckets and Streams: Learning the Cortisol Pump

The cortisol pump is changing lives, both patients and doctors are taking notice. As more people switch to cortisol pumping, I see more and more questions and confusion about programming the pump’s basal rates.

Cortisol Pumping requires a whole new way of thinking about your steroid dosing. Whatever dosing schedule or amount you were using with pills does not simply translate into the pump. The continuous method of delivery is so different you can’t really think of it in “doses” anymore. With cortisol pumping you program a set amount of units per hour in time blocks of your choosing, and your steroid is infused at that rate in continuous, tiny, drips. Your rates build on each other. With oral steroids, each pill is a separate dose. The dose you took at 7am doesn’t have any influence on the dose you take at noon, not so with the cortisol pump. Each delivery rate on each time block you program will affect the others. It’s an art really, knowing which times need which rates. Titrating your basal program is sort of like carving a sculpture. The sculpture you’re creating is your perfect cortisol peak. You mess up one part, and the whole sculpture is junk, but when you get it right, its a thing of beauty.

Another analogy I’ve been using a lot lately is about buckets and streams.

Wait, what does that have to do with cortisol pumping?

Okay, pretend you’re a fish, and you’re flopping around on the ground. Think of your pills as buckets of water (cortisol) that just get dumped on you from time to time throughout the day. It’s enough to keep the fish alive, but that’s no way for a fish to live. The pump is more like a stream. It keeps flowing and the water level gradually rises and lowers based on your basal program. You could, in theory, measure all the water in that stream. You could put it in buckets and keep dumping them on the fish as it flops in the dry creek bed, but its not the same. The fish is still going to do much better living in the stream.

What I’m saying is, buckets and the stream are not equal, and neither are pills and the pump. I think new pumpers sometimes set themselves up for frustration when they apply conventional wisdom of oral steroids to cortisol pumping.

Also published on Adrenal Alternatives Foundation

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

3 Years on the Cortisol Pump

What happens to your body after 3 years on the cortisol pump?

I lost my adrenal glands to cancer and became adrenal insufficient in September 2014. I was told by my endocrinologist at time it was no big deal. Just take two pills a day and you’ll be fine! (She’s not my Endo anymore btw.) I wasn’t fine. I was weak, sick and miserable. I tried 3 different oral steroids, and increasingly complicated dosing schedules attempting to replicate what healthy adrenal glands do. Nothing I tried was quite right. My health was declining. I was catching illness after illness. I spent nearly everyday in bed. I was watching life pass me by. I was 27, and elderly people had better quality of life than I did. This took a heavy physical and emotional toll on me. The most heart breaking part was how it affected my family. My children were very young and they were already getting used to mom not being involved in their lives. I was devastated.

The day I started my pump I was on 188mg of hydrocortisone. I had been sick with respiratory illness for 6 months straight, and could not seem to recover. Any less steroid would leave me unable to breathe and spiraling into adrenal crisis. I was suffering with symptoms of BOTH over and under replacement of cortisol. Something had to change.

This is where I was most of the time before the cortisol pump.

Though most people have a slight increase in their steroid dosage when they initially start the pump, I was able to reduce my dosage from 188mg to 84mg right away. (Side note– that dosage has continued to decrease as I have gotten healthier. I’m at 30.2 daily milligrams as of fall 2019.) My body was responding well to subcutaneous hydrocortisone.

I saw immediately improvement, but didn’t see dramatic results right away. The first day, I was able to get out of bed, do simple things around my house– cook dinner, spend time with my children, clean up the dishes. I felt different though– no more roller coaster of peaks and crashes as each pill kicked in and rapidly wore off.

The pump is not magic. It took tedious adjustment of the delivery rates, which was almost completely trial and error. The pump enabled me to get my tired body up and make myself exercise my atrophied muscles. It took work and determination. In time, I could drive myself, I could walk around the block. It took nearly a year of adjustments before I could sleep like “normal” people do. I still woke up with a pounding headache every morning, but even that was still an improvement.

So where am I now?

You can tell I’m sick in the first image. I was sedentary, had constant respiratory problems, and was about 30lbs heavier.

It’s important to realize that the pump will not cure adrenal insufficiency nor any of your other health conditions. I’m still battling cancer and I still deal with a few other issues, but my life had changed dramatically for the better. With years of hard work, titrating delivery rates, training my body I can now pass as a “normal” person. I can be active all day most days (there are always good days and bad days with any chronic illness). I can drive. I can exercise- I walk, run, bike, do yoga. I have a social life now. I volunteer at my kids’ school a few hours a week, I serve at my church, and we’re active in scouting.

It’s still a fight. The struggle doesn’t end when you switch to the pump. You’ll always have to deal with things like insurance companies and pharmacies fouling things up. I still occasionally see doctors that are completely clueless about this treatment. Most are intrigued, a few are critical of it. I’m happy to educate them! (Side note– they aren’t always happy to be educated, but I’m going to do it anyway! 😉)

I can see why the cortisol pump might not be right for everyone, but I truly feel that everyone with adrenal insufficiency should have this option available. Some of my doctors at both the National Institutes of Health, and at UT Southwestern have mentioned the possibility of opening a new study on the cortisol pump, and while I’m not going to hold my breath, even just the fact that they’re seeing the benefits is a huge step.

If there’s one thing you take away from this it’s that the pump is a tool. More like a musical instrument actually. If you buy a guitar for example, it does no good if you don’t learn how to play it. The more practice you have with your instrument the better it sounds. This concept holds true for the pump as well. It all comes down to how well you program and use it. If your basal rates are junk– you’ll feel like junk. If you refuse to bolus, or bolus too little too late, you’re still going to feel awful. The pump is a tool to help you manage your AI. It doesn’t do it for you.

I am grateful for the cortisol pump every day. It has given me my life back. No longer am I stuck withering away in bed while life passes me by. I’m up and out and making memories.

UPDATE: Please checkout thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Surviving the Heat with Adrenal Insufficiency

Heat is my nemesis, but it hasn’t always been this way. Actually, I really enjoy summer! My problems with heat started when I had my adrenal glands removed and I became adrenal insufficient. I’ve come to realise that I’m not alone. Most, if not all adrenal insufficient patients struggle with heat intolerance. To further complicate things, we are highly susceptible to dehydration because of hormone deficiencies.

So what is an adrenal insufficient patient like me to do? Stay indoors all summer and let life pass me by? If you know me, you know that’s not my style! I’m too stubborn to give up!

This past week my kids had their first ever scout day camp. I was obligated to attend with them as a walking den leader. I was terrified. So much could go wrong! Me, with my less than dependable health, out in 90 degree weather, all day long? I often get dehydrated even when I’m not in the heat. I get fatigued from just running errands some days. How in the heck am I going to pull this off?

The night before I was panicking. What if I couldn’t handle it? If I had a medical emergency I’d be so embarrassed! If I got dehydrated and fatigued, I’d be letting the other den leaders down, and they wouldn’t understand what was really happening to me. I was crying and even typed out a text to back out of the whole thing– I didn’t hit send though!

The first day of camp I showed up prepared as possible. Shorts, hiking boots, baseball cap, sunscreen, bug spray, TONS of water and my electrolyte drink of choice, coconut water, a liter of it! As prepared as I thought I was, the first day was brutal. I was feeling wiped out from the heat by the time we got to our first activity. Splitting headache from dehydration, despite drinking every bit of that giant bottle of coconut water. I was fatigued and feeling “out of it” my muscles were getting sore, again probably from dehydration. I use a cortisol pump, so I did my typical bolus amount, took an extra dose of fludrocortisone, a salt tablet, and some Advil for the muscle pain and headache. It got a little bit better in about an hour, but I was struggling until dinner time. After the rest and food at dinner, I felt a lot better.

Day two I knew I needed a better strategy. This time I brought a camping chair to sit in so I could rest a little during the instruction times at each activity. I also bought a wagon to carry it and all of the things the campers ask you to carry along the way (I should also add that my right arm is broken at the moment which makes carrying things kind of tough). It was a smart move, but STILL I was dealing with that fatigue and dehydration headache by the first activity! It didn’t seem to matter how much water and coconut water I drank! Again, I bolused, took extra fludrocortisone, salt tablet and Advil. I bounced back just a little bit quicker this time. Day 3 went about the same. What was I doing wrong? Maybe the killer headache and overwhleming fatigue were just unavoidable in this heat?

Well good news, day 4– I figured it out! We arrived at camp just like the previous days, but this time I bolused right there in my car, before I ever stepped foot into the heat. I changed my bolus strategy too. I took my typical bolus amout and DOUBLED it. I utilized the “dual wave” bolus feature on my pump (OmniPod and Tandem call this extended bolus, and Animus calls it combo bolus.) On my medtronic 630g you have to turn on this feature in your settings. Dual wave allows me to split up my bolus. You set a percentage to deliver immediately, and a percentage to be slowly delivered over a time period you chose. I delivered 50% of the amount (which would be my typical bolus) immediately, and had the other 50% delivered over the next hour (which happened to be the heat of the day). I also went ahead and took that extra fludrocortisone, salt tablet and Advil ahead of time. I went the entire day, active, alert, and symptom free! Day 5 was also symptom free!

It turns out the key is being prepared BEFORE you ever step into the heat. Don’t wait until you’re already sweating, don’t wait until you’re feeling wiped out and crappy! It’s going to take you all day, or even days to catch up at that point!

In summary, here’s what I learned:

If you know you’ll be in the heat, bolus (or updose) ahead of time! If you’re only going to be in the heat an hour or less and not physically active, a normal bolus (plus adequate hydration of course) is probably all you need. The important thing is that you do it BEFORE!

If you’re going to be in the heat for several hours, or plan on being physically active (such as yard work or a sport) you will need more steroid than you think. For me, I needed double my typical bolus amount. Splitting it using the dual wave feature was a huge help. I also needed to increase my basal rate signifcantly. I may not have needed to do this if I could have managed the first 3 days better, but by day 3, I was on my “sick” basal profile, and I stayed on that profile for the rest of camp.

HYDRATE! Don’t wait until you’re in the heat to hydrate, don’t wait until you’re thirsty, and don’t think that just water is going to do the job. You need electrolytes and you need to start drinking them HOURS before you go outside. You really can’t start the intense hydrating too early! As I said, my electrolyte drink of choice is coconut water, do what works for you.

Shade is precious! The sun is BRUTAL! Stay in the shade as much as possible. If you get an oppotinty to sit and rest, don’t be too proud to take it! Try to find ways to exert less energy, maybe that means sitting, using a cart or wagon to carry heavy things, or humbling yourself and asking for help (which I did have to do at one point).

Sun protection/bug spray! I hate sunblock. It feels greasy and gross. Bug spray is stinky, yuck! Here’s the thing though– you don’t want to add any additional stressors to your body by getting sunburned or insect bites. On that note– dress appropriately! Dressing for the outdoors is not very stylish, but ou want to dress in a way that you stay cool, and protect yourself from sun, biting insects or itching plants.

It figures that my experience from scout camp basically amounts to “Be Prepared” which also happens to be the boy scout motto!

Stay safe and cool this summer!