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.
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.
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 37 daily mgs at the time I’m writing this.) 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.
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!
Any insulin pump is suitable for cortisol pumping. OmniPod is a tubeless pump. The pumping mechanism, medication, and cannula are in one “pod” that is adhered directly to the skin. With tubed pumps, your pump and medication are in the device that is attached to your infusion set via tubing.
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!
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!
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 intentionallymaking 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”.
I had a dream that I was looking for you. I could hear your voice. I called your name. I was in a closed off room. There was no door to get to you. I could hear you just on the other side of the wall. The wall was so thin, I could feel it move when I touched it. So I tore into it. First I ripped through plaster, then there were layers of clear plastic sheets underneath. I could see your face on the other side. I could hear you talking to me and I could see you smiling. I kept ripping away layers of plastic and calling your name. I became more and more frantic, ripping away at the wall faster and faster, I started to break a sweat, I started to cry, but I still couldn’t get to you. There was always a layer in the way.
I cried out in grief and despair. I said “If only I could reach you. If only I could talk to you again.”
It’s not to late. We’re not dead yet. There’s only a thin wall between us. I go about my days thinking I don’t miss you at all, thinking that my life is better without you. Clearly, that’s not true. I carry this hidden grief within me. I’ve even managed to hide it from myself.
The truth is, deep inside, I love you and I always will. I will never stop being your sister and you will never stop being my brother. We can either accept it, or we can die with the searing regret of knowing we wasted precious years we could have spent loving each other.
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.
I’m actually doing really well right now. I feel really good and I’m so grateful for that!
I came back from a follow up trip to the National Institutes of Health in July. During this trip we found out that all of my tumors have grown, and I have several new metastases to the liver. Most of these tumors and the liver metastases are likely spread of medullary thyroid cancer. One tumor on my left hip is a pheochromocytoma metastasis. That tumor must be removed before anything else can be addressed.
So I’ve been really busy preparing for my trip to NIH (again) in just a few days. I’ll be there for two weeks this time. One week of pre-op testing, then surgery, then a week of observation and recovery before I can fly home.
Honestly, I’ve been stressed and afraid up until very recently. You would think after so many surgeries I wouldn’t be afraid, but sometimes knowing what to expect is both a blessing and a curse.
In the past week or so I’ve come to feel more prepared and optimistic. The meds they put me on to prepare for surgery were tough at first, but I’m adjusting well. I still don’t love that I’ll be away from my family and my home for two weeks, but I know I can get through this. Then today at church we had an amazing service that talked about being rooted in love (and as we know, perfect love drives out fear), which was a very timely message for me. All through worship and the sermon I felt like God was speaking to me. I also found out the communion crackers are gluten free, so I got to participate in communion for the first time! It was pretty exciting for me, and I’m feeling more confident about this trip now. I know this will not go how I expect. It never does. That just seems to be God’s way. Whether it’s better or worse than I imagine, it will still be okay, because God will be with me.
I’m looking forward to getting all this behind me. It won’t be my last surgery, but it will be one less tumor, and one more important step in this journey. I’m not sure exactly how this is going to go, but I’m hopeful for an uncomplicated surgery and smooth recovery. I hope that before long I’ll be back to feeling as good as I do right now.
Thank you to everyone that has listened to me and given me encouragement. It really helps.
“You have new lab results,” The message says. Finally. There they are. I hesitate to open them. These are the numbers I’ve been waiting for. A tinge of fear. God help me. I don’t even know what numbers I want to see at this point. High or low, I don’t even know anymore. Just answers. I want assurance. I want peace of mind, but I already know these results won’t provide that.
Well. I had a nice break from pheo, but once again, less than a year later, I find that it is not done with me. It’s hard not to be discouraged. Will this fight ever be over?
And so it begins…the familiar routine with the same meds. It conjures this deja vu of horror. The pain and fear resurface. Here we go again.
I know that I can do this. I know what to expect, which is both a blessing and a curse.
I still need an MRI done locally. Then I’ll head back to NIH for more testing and they will give me their take in the situation.
I will say that I am blessed to finally have quality medical care. I’m blessed that we can keep catching these tumors quickly. I suppose I’m glad my suspicions were confirmed, rather then being left to wonder and worry.