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!


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!

The Results Are In: An Update

“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.

The Rare Life

texture-489276_640As I lay still inside an imaging tube, I think about how grateful I am to be here. I’m at the National Institutes of Health, currently in the middle of my 6th scan in 4 days. I’ve worked for 5 months and traveled over 1,300 miles to participate in a research program specifically for my rare condition.

If there were a Mecca for rare disease patients, it would be the National Institutes of Health. We’re all rare here. We come from all walks of life. We are young and old, we are from all different races, genders, religions and countries. We all have difficult-to-say conditions with impressively small statistics, numerically proving what a rarity we are. Some wear it like a badge of honor, some prefer not to talk about it. In either case, I’m blessed to have met these people. We are so different, but  we share so much of the same experience- the rare life.

We fight back against our conditions everyday as well as the implications of our rarity- baffled doctors, delayed diagnosis, lack of treatment options. We are all here, not just because we need help, but because we want to use our pain as bricks to build a better future for others with the rare life. We subject ourselves to a gauntlet of testing. Countless blood draws, needles in every accessible vein, multiple IVs. We endure radioactive injections, spend hours motionless in claustrophobic tubes. We run ourselves ragged from one appointment to the next, pushing our tired bodies in the name of science.

When I see other faces with me in waiting rooms I feel their weariness. We are all bruised and scarred. We are soldiers in the war on rare disease, and we’re all in this together. One woman in a wheel chair told me, “This is only for the strong.” I know what she meant, not the strong in body, but the strong in spirit. The rare life makes you strong.

Hot tears stream down my temples and into my ears as I stare up at the inside of the imaging machine. I have to lay perfectly still in the tube. I miss my family. My daughter is my driving force, she too is rare. We share the same genetic condition, Multiple Endocrine Neoplasia type 2a. I know that everything I do is for her benefit. Too many people suffer and die unnecessarily because of lack of knowledge or treatments. I will do everything in my power to insure that this NEVER happens to her. I will teach her how to live the rare life, to find your own answers when everyone else is scratching their heads, to clear a path when there are nothing but obstacles in your way, to speak up and demand the care you need when you’re brushed aside, and most importantly, to find joy in each day you’re given.

This is what it means to fight.

This is the rare life.

Taking My Life Back from Adrenal Insufficiency

​I’ve been using the cortisol pump for 8 months now. I wanted to give an update here since I have been spending less time on social media. I am happy to report this time away has not been due fatigue or illness, rather I have been out living my life. Yes, in spite of everything, I have been enjoying a season of good health. Of course that is relative. I still experience things that would send normal people running to their local ER, but to me that’s just life.

Things have been going really well lately. I feel as though I finally have my adrenal insufficiency well managed. It has been, and remains the greatest challenge of my life. This challenge has transformed me, and tested both my mind and body. I’ve learned some very harsh truths about life and the medical industry. I’ve had to research obsessively about endocrinology, nutrition, and medication. I’ve had to fight doctors, pharmacies and insurance companies. The cortisol pump has been the biggest game changer in this journey. Before the pump, my health was gradually declining. I spent much of my time in bed, too fatigued to do things with my family or around the house. On good days I could leave the house, but it would completely wipe me out for days. I was experiencing the symptoms of both too much and too little cortisol because oral medications simply cannot replicate what a healthy body does naturally. I have so much more control with an infusion pump. The first day on the pump my steroid dosage went down by 39% without sacrificing any of my quality of life. My dosage has decreased another 21% since then, and I have a more active life now than I’ve had in 2 years.

Another big change came when I went gluten free. I was in denial about this one, it kind of felt like a dirty secret. I really didn’t want to give up pizza and bread and have a restricted diet, but it happened on accident actually. Mid September I started feeling really good, much more energy than before, fewer low cortisol symptoms. When you live with a chronic health condition, mysteriously feeling better is unusual. I reviewed my data, all of my journals, my meds, my food. What was different? None of my meds had changed. Then I realized that I had been eating all of the same foods as my gluten free daughter, for over a week. Mind. Blown. Was the answer really that simple? Turns out it was. The longer I’ve stayed gluten free, the better and better I feel. I can’t sit here and say this would help anyone else with any medical issue, but it’s been a huge improvement for me. I figure, if I can give up bodily organs in order to be healthy, pizza is really a small price to pay by comparison.

Lately, I feel able and capable. I can handle day to day life with minimal issues. Problems that would have derailed me before are now easily overcome or ignored. I am more involved with my children. I can take them on walks or go the park. We do craft projects, read, and bake together. Not that I’m trying to brag, but this is a big change for someone that hardly had the energy to get out of bed a few months ago.

One of my biggest goals since becoming adrenal insufficient has been to rebuild my strength. Even before adrenal insufficiency, pheochromocytomas made me very thin and weak. I’m sick and tired of feeling fragile and weak. Now I am finally at a place where I am physically able to work on this goal. Exercise with adrenal insufficiency and an active pheochromocytoma presents some unique challenges that makes progress exceedingly slow, but progress is progress. I feel so grateful to have this physical ability and to see my strength and endurance very slowly but steadily increase.

I think if it weren’t for my pheochromocytoma, I could have a pretty normal life now. It’s been relatively quiet I guess. I’ve only had two painful attacks in the past week. I still have small attacks multiple times a day. They don’t feel very good either, but after nearly 7 years of dealing with this, I consider this tolerable. In a weird way, I’m almost grateful for these attacks, as they keep me motivated to get this tumor the heck out.

I fly to D.C. next week for tests and imaging at the National Institutes of Health. With any luck, perhaps this could be the beginning of the end of my “life with pheochromocytoma.” Fingers are crossed!! This will be the first time my tumor has been imaged in over 6 months, so hopefully it hasn’t changed. Hopefully it hasn’t grown much and is still operable, because that is my only chance to be cured of this. I could finally have my body to myself and not have this little tumor control or restrict me anymore. I can’t tell you how amazing that sounds to me.

I have so much to be grateful for. Armed with knowledge, the cortisol pump, and with the help of some diet and lifestyle changes, I am taking my life back from the ravages of MEN2a and the subsequent medical conditions it has caused. I also hope with help from the National Institutes of Health I can one day close this chapter of my life, and this can all just be a memory. A testimony of God’s grace. 

I feel excited and optimistic. Wish me luck! 😉

❤ Michelle

MIBG & Iodine Allergy

This is an explanation of the scan I’m going for today. From an MIBG pro ❤

Pheo vs Fabulous

You can kind of call me a pro scanner by now, I’ve only done like a thousand. (Okay, maybe not 1000, but A LOT)

My insides like taking pictures just as much as my outside.

It’s that time again, MIBG time! An MIBG is specifically designed to visualize certain types of neuroendocrine tumors like mine, pheochromocytoma being the focus of my discussion as this is the cancer I have.

As many of you know – MIBG is also used as a therapeutic agent as well, I just had my radioactive treatment in January, and this scan is just another segment of my follow up protocol before we dive into the next steps of my treatment.

For those of you who are about to have an MIBG scan and are wondering what it’s all about, I figured I would give you the deets! I even make it more fun and complicates…

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No More Miss Nice Girl

I could not have said it better!!

Athlete On Steroids

~I’m Gonna Live Even If It Kills Me~

And that’s the spirit from now on. What’s going on? Well, I woke up. Into spring. Slowly back into life. I’m feeling more energetic and my brain fog is finally clearing. I still have hypothyroid symptoms but I’m hopeful they’ll abate after some time as I’ve upped my T3 meds and am taking iron. As my brain is slowly starting to reboot and I’m once again able to think clearly, I realized that I’m the best expert on my body. Not my doctors. Not lab results. I’ve always been an odd case anyway, or as a friend would say, “a special snowflake” ;). You can’t always find cookbook solutions to every medical problem under the sun.

I already have very rare diseases and on top of that they aren’t always acting as they’re “supposed to” if compared to medical textbooks. I react…

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What Was Meant To Destroy Me

A year ago, I was afraid to talk about my condition. I thought “staying strong” meant keeping my struggles to myself, and feared that any mention of it would be seen as complaining and attention-seeking. I’ve always been the quiet type, introverted to the extreme.

Then in June, I had my first Adrenal Crisis. I nearly died, and my family was confused. What was that? Why did it happen? It occurred to me that I needed to talk about it. I owed to them, and I owed it to myself. No one would ever understand if I didn’t speak up and let them know. So I broke my silence then and explained the incident. I went on to talk more about my condition. It was a very slow process for me. I started small, sharing articles or relatable memes about chronic illness. As I got more vocal, some people unfriended me, some family members unfollowed me. They don’t understand, but that is the whole reason I’m doing this.

I started a blog with the intention of finding my voice, and with the hope that by doing so, I could help others find theirs. There are so many suffering in silence. Strength is not synonymous with positivity. We are strong when we chose to speak about our experiences and share our reality. We are strong just by chosing to get up and live our lives, however mundane that may be. We don’t owe anything to anybody, and we have nothing to be ashamed of.

Today I was published by a website created by/for the disabled community called The Mighty. The Mighty has 80 Million readers. 80 Million!! 

I have no idea what I’m doing or where this mission will take me, but it’s my greatest hope that it will empower others as well. This is who I’m meant to be, and I want everyone else to embrace exactly who they are as well.

Much love,



10 Ways to Love Yourself in 2016

I’m not one for New Years resolutions. It occurred to me last year that they are rarely accomplished and hardly make you a better person. Add obstacles like health problems, and well, life in general, and these resolutions become pretty unrealistic. So in lieu of resolutions and trying to improve yourself, why not love the person you already are?


1. Make a list of all the things you LOVE about yourself.

This may be difficult at first. Don’t rush this, take some time to yourself to really think about this question. What is it you like about yourself? Are you compassionate? Ambitious? Determined? Write this down and view it often. I promise if you give it thought, you’ll discover you have way more qualities than you thought.

2. Stop speaking negatively of yourself and others.

We don’t even realize how critical we can be or how often we down ourselves. This may be a hard habit to break, but be mindful of whats flowing out of your mouth. Venting can therapeutic, but dwelling in that frame of mind will not help you at all.

3. Learn positive ways to control your negative thoughts.

Catch that negative thought and make it a positive. There is always a silver lining somewhere. Humor is another favorite coping mechanism of mine. Find the irony, the absurd, and have a laugh instead.

4. Writing- What are the best things in life?

Pull out a piece of paper. What are your all time favorite things, people, places, experiences. Your family and friends? That acheivement you worked so hard for? Warm clothes out of the dryer? That vacation you loved? Maybe hot tea and a cool breeze?

5. Writing- What are your favorite quotes? Why do you like them?

Surely at some point you have come across a quote, or several, (a few hundred maybe lol) that have resonated with you. Perhaps it accurately described a feeling or situation, inspired you, made you laugh. Take some time to write down (or print) a few of your favorites. Put them somewhere you will see them.

6. Hang a picture of yourself that makes you feel beautiful.

No matter your feelings about your appearance, you are beautiful because you EXIST. You are one of a kind, no one has experienced what you have and that is intrinsically beautiful. I challenge you to find your favorite picture of yourself, one that makes you feel happy and beautiful. If this picture is not already on display in your home, make it happen now.

7. What were your blessings of 2015?

Maybe you are already in the habit of counting your blessings, or maybe you don’t even like the word “blessing.” Verbiage is irrelevant. What are the good things that happened this year? Maybe it’s been tough, skip over the bad this time, and reflect on the good that transpired in 2015.

8. Create a mantra for the new year.

This can be like a goal, or maybe an attitude, or feeling you want to embrace or internalize. It could be something as short and sweet as “I am loved.” Last year, mine was “I resolve to enjoy life, every moment of it. To share love and gratitude with others and myself, and appreciate the goodness and beauty in the world.” I don’t know if I followed this mantra 100% of the time, but I did pretty good in spite of the challenges life throws in the mix.

9. Make a donation- time, money, goods, skills, try to think out side the box.

Stop thinking of donations solely as money. Many charities need money most of all, and there is nothing at all wrong with a finincial donation, but don’t limit yourself or give up if you don’t have the funds. You have limitless resources to give. You can give lightly used items, maybe contribute your talents, or just volunteer your time. Personally, I think love is the most needed and least given donation. A kind word, a listening ear, a hug, a genuine complement, all of these are in short supply.

10. Commit a R.A.K.

A Random Act of Kindness! Have fun with this. You can even look for ideas online if you’re drawing a blank. It doesn’t have to be complicated. Leave an encouraging note, pay the toll for the person behind you, hold a door open, help some carry their groceries. Even a smile is a random act of kindness if you ask me. 😀

Wishing everyone a happy healthy New Year! Make 2016 great!