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.

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.

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.

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®

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!

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!

A Forced Rest Day

I’ve said before that I feel like I live two lives. There is often this duality when juggling a medical condition. Its the struggle between “I’m not going to let anything stop me!” and, “I need to respect my limits and take care of myself.”

Part of me wants to do all the things. Anything I can physically do, I need to do it while I still can. My fear is that I can never stop, or I will begin to deteriorate. There is some truth to that. I can’t let cancer or chronic illness be my excuse. I have to push against it all the time.

Sometimes I get carried away. I over extend myself, ignore my limitations, and run myself straight into the ground. It happens to everyone at some point.

What happens then is what I call a “forced rest day”. A forced rest day is when your body just says “Nope, not today.” You can try to push through it, but the push back only gets stronger and stronger, and without adrenal glands to kick in and make the hormones I need to keep going, I will eventually be forced to rest.

A forced rest day means prioritising your tasks of the day to just the essentials. If it can be cancelled, cancel it. If it can wait, then let it wait. If its something I can’t cancel, I can increase my steroid dosage and drag myself out of bed, but that comes with consequences too. The more you keep pushing, the greater the back lash will be. Even with ever increasing medication, I will still slowly burn out like a dead battery. The rest day will not be ignored!

A graphic I made a couple years ago for AIC.

The hardest thing about forced rest days, is that they cannot be planned. They don’t fit conveniently into your schedule- ever. They just pop up unannounced and they don’t care about your plans. They don’t care if it’s a holiday or if you signed up for this or that. They don’t care how long ago you made a particular appointment or who might need your help. Your body just says, “I’m done.”

What can I do about forced rest days?

All bodies require us to care for them. Bodies with health conditions need a bit of extra care. Sometimes in our efforts to be “normal” we forget this. On a forced rest day, your focus should be caring for yourself, recovering so you can get back to doing life. Eat healthy food, drink lots of water, take your vitamins. Wear comfy clothes, and REST!

If you like my graphics, click to see more on my facebook page, HEARD.

I have a secret for you… If you can incorporate self-care into your “GO!GO!GO!” life, then you will have fewer forced rest days! The thing is, its easier said than done. It takes responsibility to say, “Woah, my schedule is overloaded here…I need to cancel something and make time for rest.” It seems selfish, lazy even, but far from it! You’re intentionally making time for “rest”. It doesn’t have to be actually laying down or sleeping. It can be spending an evening at home having a nice meal, rather than scarfing down a snack in between homework and a meeting. It can be catching up on a book and enjoying the peace and quiet, before heading out to a big event later. Its all about balance!

When we achieve that balance and tame our busy lives by adding these strategic rests to our schedule, the end result is less “burn out” and fewer “forced rest days”.

Take it easy,

😴Michelle

“Sick Rates” Yes, You Need Them!

What if I told you that you don’t have to feel like utter crap every time you get sick? What if your illnesses and injuries didn’t force you to miss out on life? What if there was a way to feel better faster?

Anyone with Adrenal Insufficiency knows that an illness or injury, anything causing your body an extra amount of stress will require a “stress dose”. For anyone unfamiliar with the term, that is an increase of your steroid dosage in order for your body to cope with physical or even in some cases, emotional stress. A stress dose can be a one time extra dosage (which in pump speak we call a “bolus”), but most often it entails doubling or tripling your total daily dosage of steroid.

But what if there was a better way?

For any patient using a cortisol pump, doubling or tripling your basal rate is NOT the most effective way to combat the stress of an illness. Professor Peter Hindmarsh, the leading expert in cortisol pump therapy, states in his book that doubling basal rate DOES NOT double your cortisol level (Congenital Adrenal Hyperplasia: A Comprehensive Guide p.357). Instead he suggests running a different basal program. Ladies and gentleman, you need to have “sick rates”!

What exactly are “sick rates”?

Sick rates are modified delivery rates part of a basal program better designed to accommodate your body’s cortisol needs when you’re ill, (or injured, or grieving, etc.).

Basically, when a person is sick, the pattern in which the body produces cortisol changes. Rather than the typical high peak in the morning declining throughout the day to a very low cortisol level at midnight, cortisol is needed in a more consistent elevation. Cortisol levels are higher and more “flat” in appearance if you were to draw them on a graph.

This change in distribution is key. You don’t even necessarily need to double or triple the amount of milligrams, having this more consistent delivery pattern when your body needs it makes a world of difference.

So what do sick rates look like? How do I program them?

The main difference you’ll notice in my example is that evening and night rates are much higher than you’d find with typical circadian rhythm. This is on purpose, and its the most crucial part of the program. Don’t cut these evening rates down and expect it to be effective. That’s the whole point of the “sick” profile.

Full disclosure: I did not design this delivery profile. For the sake of privacy, I will not name the person who did, however I will say that this person is a medical provider with many years of first hand experience with adrenal insufficiency, and management of cortisol pump patients.

You might have some questions…

Only 4 time blocks?- Yes. You don’t need a complicated delivery profile for illness. You want it to be elevated, consistent, and “flat”.

Isn’t 84mgs kind of high?- Maybe. It would depend on your normal daily dosage and exactly how sick you are. As a sick day profile, 84mgs is a good amount for someone who takes 30-40mgs on a typical day. Keep in mind this is for when you’re experiencing significant illness or injury. I’ve also used this profile to cope with the emotional stress of the sudden loss of a loved one. This is not a profile for sniffles. The beauty of this basal profile is that you can switch to it and set a temporary basal increase or decrease to suit your level of “sick”. Have a cold? You can set a temp decrease. Recovering from a major illness or surgery? You can set a temp increase.

This can be template for you to explore alternative basal profiles. For example, I have a profile that is a steady 6mg/hr for 24hrs. This is what I used to wean down from IV steroids post surgery. From there I made a profile with 2 time blocks, 6mg/hr for 12hrs and 4mg/hr for 12hrs as a step down toward “sick rates”. My point is, basal profiles should be flexible to suit your body’s needs in a given situation. Just as a non adrenal insufficient person’s cortisol production is not set in stone, neither should our basal rates.

Don’t wait until you’re sick to program a sick basal profile! You won’t be clear minded enough to design a totally new profile. Just plug this into your pump now and save it. When you do need it, you can just switch over…no hassle, no worries!

What if I don’t use a cortisol pump?

If you’re not yet using a cortisol pump, you can still use this principle in your stress dosing strategy. This can be accomplished in one of 2 ways. You can either dose your hydrocortisone MUCH more frequently (which can be difficult if you’re feeling poorly), or you can use a longer acting steroid such a Prednisone or dexamethisone to give that more consistent elevation.

What I hope you take away from this more than any cookie cutter basal profile, is that you begin to look at your body’s cortisol need as an ever changing and fluctuating thing rather than how we typically view set doses of medication. Look at your basal programs and dosing schedules logically and creatively.

A cortisol pump is nothing more than a tool. The more skilled you are at using this tool, the better you will manage your Adrenal Insufficiency.

Happy pumping friends!

❤️ Michelle

For more information about sick dosing please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Mistakes Mean You’re Learning: Pumpin’ Ain’t Easy

It’s been a little over 2 weeks on the cortisol pump. It is most definitely an improvement over oral steroids, but wow, I have so much to learn!

My delivery rates still need adjustments, especially at night. So far my sleep quality hasn’t improved much, but I’m confident I’ll crack this code soon! 😀 What I get out of the pump is entirely dependent on how well I can manage the delivery rates and choose a well performing site to place my inset. Picking the right site for an inset can be tricky. I try to choose place that wont be bumped or pulled out, but it also must be a spot with plenty of fat and absorbs the medication well. This means it can’t be near the belly button, any old sites, or scar tissue. Because of surgical scars, I’m somewhat limited on site options.

I’ve been making plenty of mistakes 😉 I had my first bad site as a result of a newbie error. I inserted the cannula without removing the protective cover, and didn’t even realize it. Surprisingly, this site worked for nearly 24 hours, not very well, but it did okay before failing completely.

imageOops! Cannula with the blue protective tube still on after I pulled it out. 😦
Oops! Cannula with the blue protective tube still on after I pulled it out. 😦

Site changes are not the most pleasant thing, even when you’re feeling good. When you’re crashing they’re near impossible. I was fighting to keep my eyes open, and struggling to remember what I needed to do to change the inset. This taught me to keep everything I need for a site change in a bag all together.

imageSite change necessities.
Site change necessities.

I also learned that cartridge changes that are not done at the same time as a site change will waste 10 units of SoluCortef to prime the tubing if I don’t use new tubing. Lesson learned! Save the extra tubing from site changes and use fresh tubing for each cartidge change.

imageExtra tubing
Extra tubing

Another lesson I learned for cartidge changes is to mix the SoluCortef first, before starting the cartridge loading process. This should have been obvious 😉 . Once I start this process, the pump will stop all deliveries, so I am without medicine until the process is complete. Normally this can be done easily without an issue, but sometimes I do get interrupted, and ideally I want my time without any delivery to be as limited as possible. So now I mix the meds and have everything ready before I start.

imageMixed and ready to load the new cartridge.
Mixed and ready to load the new cartridge.

When managed correctly, the pump allows me to do more than I could when I was on oral steroids. I still have bad days, usually they are a result of me being too ambitious and over exerting myself. Little things that used to be a big challenge for me are getting easier. Another huge plus, is that I dont feel like a walking pharmacy when I leave the house. Before, I would have to prep and pack all of my doses of pills in order to go anywhere. I still have a dose of back up oral steroids and a site change kit in my bag, but now I can just grab and go, as opposed to all that preperation. I also love not having to take doses in public anymore. It doesn’t seem like a big deal, but its’s a little thing makes you feel less abnormal.

imageBack up oral meds and emergency site change kit. These stay in my bag so I’m always good to go.
Back up oral meds and emergency site change kit. These stay in my bag so I'm always good to go.

I’ve already noticed some encouraging improvements in the 2 weeks I’ve been pumping. There is lot to learn, but I do love a challenge. I only hope this progress continues!

Thanks for accompanying me on this journey friends!

💕Michelle

For more information on the cortisol pump, please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping.

Preparing for Severe Weather with Adrenal Insufficiency

 

Hurricane season begins June 1 in the United States. Everyone in coastal regions should take this time to prepare. Hurricanes also have the potential to create severe storms inland that can result in wind and flood damage as well as power outage. DO take this time to either create a disaster plan and stock your supplies, or review your existing disaster plan and check through your emergency supplies. Those of us with life threatening illness have unique challenges to prepare for on top of all of this.

Guest writer Maria Stewart has some life saving tips to prepare for severe weather with Adrenal Insufficiency:

SEVERE WEATHER FORECAST, PLAN AHEAD

The first tornadic storm of the Spring season in the US is forecast this week. I feel anxiety rise in my chest as I watch the news. Severe weather is stressful for healthy people. For Adrenal Insufficient patients it brings additional challenges. Daily control of my symptoms requires a regular schedule, how will I cope if my house is damaged and I need to stay with someone else? What if I’m outside with no shelter for an extended time? Or worse yet, what if I’m unconscious and a stranger is trying to help me? Will they know what to do? With these questions in mind I put together some tips on how to prepare for severe weather events:

1. If possible refill any medication scripts.

2. Wear your medical alert I.D. at all times.

3. Have an emergency injection kit and know how to use it. There are many instructional videos online on how to inject. Keep printed instructions with it your kit in case someone is helping you that’s never injected before. SoluCortef Injection Print Out

4. Keep some steroids on your body. I fill my pill case and put it in my front pocket. If I’m separated from my tote bag I’ll still have a few doses with me. There are also many wearable medication holders that attach conveniently on necklaces, bracelets, and key chains. Ensuring you always have an emergency dose.
Capsule Pill Case Holder Pendant and for larger pills.

5. Put together a tote bag of supplies that can be grabbed quickly with injection kit, all your meds, electrolytes, snacks, water, phone chargers, wallet, cash, emergency contacts, and emergency mylar blanket, (the kind that looks metallic and folds into 1 square inch)
Emergency Tote Bag

6. Have a plan based on the type of disaster you’re facing. If it’s a flood, where and when will you evacuate? If it’s a tornado, where is the safest place to shelter?

7. Connect with people. Hopefully you’ll have someone to ride out the storm with, but if you don’t there are ways to safeguard yourself. Be sure others know of your situation. Friends can be there for you through your phone. When I have to be alone during a storm my friend 1700 miles away keeps in contact with text messages. She knows if she doesn’t hear from me to call the local sheriff for a house check.
American Red Cross Safe and Well Database (Register yourself as safe and well after a disaster, or check the database for loved ones.)

8. Take extra steroids before things get ugly. I find I ride out stressful situations better when I don’t wait until the last minute to updose. At the very least planning ahead can ease some of the stress severe weather brings, it may also save your life!

The CDC has preparedness info in the event of any disaster.

More Hurricane Preparedness Resources:

https://www.ready.gov/hurricanes

http://www.nws.noaa.gov/com/weatherreadynation/hurricane_preparedness.html

https://www.google.com/url?sa=t&source=web&rct=j&url=http://www.nws.noaa.gov/om/hurricane/resources/Hurricane%2520ENG.PDF&ved=0ahUKEwjMrdXVqPPMAhWHMSYKHXnTBFMQFggxMAI&usg=AFQjCNE7Hz6mquHbBlkUBIc44ypK2JqDXg

Disaster Information for People With Chronic Conditions and Disabilities

http://emergency.cdc.gov/disasters/chronic.asp

Stay safe friends!

💕Michelle

When Adrenal Insufficiency Takes You Down: A Recovery Plan

This post was initially written June 2015 following an adrenal crisis. I still reference this when I am recovering from any situation that “takes me down” for a length of time ex- illness, injury, etc. *Please note, nothing here is to be taken as medical advice. You should be under a doctor’s care for any illness. It is not a cure for anything.

First of all, this main idea of this recovery plan is SELF CARE with a purpose. What is self care? Self care is an intentional act to build or preserve physical, mental or emotional well being. It includes basics such as eating, drinking, medical care, safety. It includes taking care of your own hygiene, social relationships, and our personal interests and desires. Take this list one step at a time, and do not move on until you’re done with the previous step. Yes, you may have a ton of obligations begging for your attention, but you can’t handle those and neglect your health. One thing at a time. Below is an image of Psychologist Abraham Maslow’s Hierarchy of Needs. In a nutshell, according to Maslow, we must care for our basic needs before we can build up to achieve our potential. So let’s follow this principle and take it one baby step at a time shall we?

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Recovering is about YOU! Let go of everything non-essential in your life for now. Chances are many of the obligations stressing you out will be just fine waiting, or delegated to someone else for a while. You should also be mindful of the people around you at this time. People that leave you emotional, drained, or depleted will need to be kept at a distance until you are well enough to reevaluate that responsibility or relationship.

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👧Start with yourself:

1. Focus on getting better. Just the basics. Hydrate yourself! Nourish yourself! Allow yourself to rest! It is vital you give yourself enough cortisol. Do not attempt to cut down your dose until appetite and energy return. Any sooner will only sabotage your recovery.

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2. Hygiene. We stop taking care of our basic needs when we’re sick. It happens. As soon as you are feeling up to it, shower and change your sheets. Make it a point to shower at least once a day (or whatever is normal for you 😉 ) and always after you sweat. Brush your teeth. Put on clean clothes and deodorant. (Pj’s are definitely acceptable attire at this stage.)

3. Appearance. Now that you’re practicing good hygiene again, time to regain esteem in your appearance. Start by wearing clothes that aren’t pajamas (yoga pants are okay.) Shave, you’ll feel so much better. Once you cover the basics you can do things like your nails, hair, etc.

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👪Move on to your family:

1. Your spouse. Significant others are often the ones trying to pick up the slack when we’re ill. This can leave them stressed and exhausted. When you are able, give your spouse a break. Maybe that means time out with friends or alone, or maybe a date night is in order. Anything to allow your S.O. to relax/blow off steam. Make sure you communicate your appreciation for all their hard work while you were ill, and their continued contributions.

2. Children. Age of kids and their personalities will determine how you complete this goal. Clear some time for each child. This can be an outing together, a game, a book, a movie they enjoy. You will need to reestablish their normal routine and possibly remind them of their regular rules and expectations. This might also be a good time to talk about Adrenal Insufficiency with them.

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🏠You can begin getting your home and responsibilities back in order while still building up your family. Do not attempt housework until you are back to good health. It helps if you keep your dose increased while you tackle this objective:

1. These areas seem to have the biggest impact on the overall cleanliness and feeling of a home. Focus on these main areas first. Tackle them one baby step at a time, play some music, ignore everything else until you complete these areas *one at a time.* Digging out of the mess can be overwhelming, don’t stress about anything not on your list.
– Kitchen
– Laundry
– Bathrooms

2. Other responsibilities: Sort through all your mail, handle accordingly, file it away. Ensure your bills are paid, appointments are scheduled, necessary phone calls made etc. Take it one step at a time (tired of reading that yet?)

I can’t stress enough that recovery is a slow process. You will reach a point where you are frustrated with your progress and want everything caught back up right away. Breathe. You’ll get there.

If there was ever a time to ask for help and delegate duties, it’s now. If you can afford a maid get one, or ask a friend or family member for help with house work, baby sitting, errands etc. Don’t make recovery any harder on yourself than it has to be.

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Take it easy friends,
💕Michelle

Respiratory Virus: What I’ve Learned

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I posted recently 3/16, (in my support group) about the respiratory virus I caught from my 3 year old. This is my second respiratory virus since becoming Adrenal Insufficient. You might remember the first one I had over Christmas/New Years hit me hard and I had to visit the ER twice. One of those visits I had to be admitted.

I really want to share with you all what I’ve learned from these two very different experiences, and the data I’ve collected from them. Many of you already know respiratory infections are deadly serious for us, can get nasty very quickly, and stay around for a very long time. I hope some of this data will help someone else weather their next illness.

First, I’ve noticed a pattern. Both viruses had what appears to be a 2 day incubation period. Pic #1 is my journal from the first virus in December. Dec 19th I felt fantastic, the 20th and 21st I recorded a signigicant increase in fatigue and sleep, BUT DID NOT STRESS DOSE (mistake #1) and KEPT PUSHING MYSELF (mistake #2) The third day, Dec 22, symptoms began, and it would appear after re-reading this entry I also caught this one from my 3 year old (lol!) Even with symptoms present, I DID NOT STRESS DOSE. 😱 Dec 23, I could not breathe and spent the night in the ER waiting room. The 24th and 25th were also spent in the hospital, even while hospitalized, other than the initial IV steroid they gave me, I STILL DID NOT STRESS DOSE! (You can see this in my resting HR graph (Pic#2.) The climb and spike in resting HR is me getting sicker and sicker.)

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Pics 1&2 Journal and Resting HR Dec

For anyone else scared to stress dose because of the MG’s…guess what I was prescribed for the lung inflammation? PREDNISONE! 40mg daily! IN ADDITION to stress dosing and albuterol, a bronchial dilator. I thought 40mgs in addition to stress doing was crazy and DID NOT FOLLOW TREATMENT (mistake #3) and thought triple dosing alone would work. As a result I continued to get worse, and wound up back in the ER. The virus, inflammation, resulting infection made this illness hang around for nearly 2 months.

WHAT I’VE DONE DIFFERENTLY THIS TIME:

This time around, at the first sign of unexplained fatigue, I DOSED ACCORDINGLY👍 (pic #3.) Also, this time I RESTED!👍 When symptoms presented the third day 3/16, I SHOWED THEM NO MERCY!! 👊I hit this virus HARD with everything I had, decongestant, tons of fluids, nsaid, albuterol, as much rest as possible, and most importantly- a BIG HONKIN’ STRESS DOSE!👏 My dose is still way up, and I still have some congestion, but check out my resting HR graph (pic #4) That is waaay better than last time! Instead of a long drawn out severe illness, I can already feel myself rebounding as my appetite returns.

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Pics 3&4 Journal and Resting HR March

So what about the horrible steroid side effects? Stress dosing for illness HAS NOT caused any weight gain, bloating, or mood symptoms. When I get the cortisol I need, I do not experience any mood symptoms such as “roid rage” or anxiety. Its also worth noting stress dosing does not seem to raise my BP like inadequate dosing DOES.

Maybe I just got lucky this time, but I really contribute it more to learning the hard way lol! Viruses don’t seem to follow cookie cutter rules, and they don’t give a crap about your MG’s. Moral of the story? HEALTH NOT MILLIGRAMS!

💕Michelle