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

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The Wall Between Us

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.

Your big sister forever,

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

Pre-Surgery Update

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.

Michelle

https://youtu.be/sIaT8Jl2zpI

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.

5 Reasons NOT to Get a Cortisol Pump

The Cortisol pump has the potential to dramatically improve the lives of patients with adrenal insufficiency. All current research studies indicate improvements in patient quality of life. With results like that, the pump seems like magic, right?
My own experience with the cortisol pump has been dramatic and highly successful. Positive patient testimonials such as mine, make others suffering with poor quality of life think the pump is the solution to all of their woes.
While I have raved about the merits of the pump, I’ve also been honest about how difficult it has been, and that pumping alone hasn’t fixed everything, nor did any of these changes come quickly.
I am not writing this to discourage anyone from using the cortisol pump. Personally, I love it, and I want this treatment to be an option for every adrenal insufficient patient. However, I don’t want to mislead anyone. I want patients to have a realistic idea of what pumping entails so they can make an educated decision about their treatment.

5 Reasons NOT to Get a Cortisol Pump!

1. You feel great on steroid pills.
This was never the case for me, and I don’t come across a whole lot of people that do, but there really are some patients out there that get by just fine on oral steroids. For these patients, it would not be worth the time and effort to switch to a pump and it would not be worth the extra work and expense to maintain it.
2. You are not a self advocate.
This is still an uncommon and relatively new treatment, (cortisol pumps have been in use about 13 years.) It’s likely you’ll have to search for a doctor that supports this treatment, and even when you find one, there is a good chance they will have very little to no experience with cortisol pumping. If you cannot gather research yourself, present your case to the doctor, be prepared to be rejected, and be willing to try again…it’s not going to work out. Even when you start the pump, you will have better success if you can work along with the doctor to keep track of your own symptoms and adjust your own delivery rates accordingly. You will never be able to just sit back and let someone else do this for you. If you’re not a persistent self-advocate, this is not the treatment for you.
3. Pills are too much hassle.
Yes, pills are a huge hassle. It’s terribly inconvenient to take pills 3-8 times daily. Yes, it’s annoying having alarms going off all the time for meds, and yes it totally sucks having to wake up in the middle of the night for doses.
You would think the pump is more convenient with it’s preset schedule and continuous delivery, and most of the time it is. However, the pump is not something you just set and forget. You will have to use syringes to mix Solu-cortef and refill your cartriges. You will have to change out your inset at least every 3 days following strict sanitation procedures. True, that’s better than taking pills every few hours every single day of your life, but there will be times your pump maintenance doesn’t go as planned. You might get a low units alarm at night when you just want to sleep. You might find yourself with a failed infusion set when you’re out in public. While these aren’t huge problems, it will take a bit more effort to fix than just swallowing another pill. My point is, if pump therapy seems appealing to you because of the convenience- you will be disappointed. Pumping ain’t easy! It’s totally doable, just know what you’re getting into before taking the plunge!

4. You’re afraid of needles.

Pump therapy involves inserting a Cannula into your skin with a small needle. It’s nearly painless when done correctly, but if this sounds like more than you can handle, then the pump isn’t for you. You should also know that the pump is ABSOLUTELY NOT AN ALTERNATIVE TO YOUR EMERGENCY INJECTION! You cannot rely on your pump to infuse 100mgs or more at a time. This will almost assuredly cause your infusion site to fail, which could make an emergency situation even worse. Even if you could infuse all 100mgs without it leaking, subcutaneous absorbtion will be slower than intramuscular. Also, there’s a chance you won’t even have 100mgs in your cartridge to deliver. So don’t think getting a pump will mean you never need an emergency injection.

5. You don’t want to talk to your insurance company.

Even if you’re willing to pay out of pocket for a pump or buy one second hand, you are going to have to contact your insurance company at some point. While the cost of a infusion pump brand new is thousands of dollars, the monthly Solu-Cortef can be the most costly item depending on your insurance coverage. You’ll want to know your DME benefits, be familiar with your prescription plan’s formulary list, and most importantly don’t be afraid to call and ask questions! Ask ask ask! Find out exactly what they can and can’t do, find out how to have an exception made, or how to appeal a decision. Don’t expect your insurance company to get everything right and work it all out for you, but at the same time, don’t just assume they won’t help at all. You don’t know until you try!
I encourage anyone with adrenal insufficiency, suffering with poor quality of life, to look into subcutaneous hydrocortisone infusion therapy. It has really changed my life for the better, but it has been an indescribable amount of work. Even when you start on the cortisol pump, the battle isn’t over. You will have to learn strategies to manage it…by yourself. You will have to ensure you always have a steady supply of Solu-Cortef and pump supplies, even when your insurance and financial situations change. You’ll have to be prepared to deal with unexpected maintenance and mishaps, handle them the best you can, and just keep on going. It helps to be strong willed, assertive, and stubborn. You will have to be resourceful and adaptive. There are times even the strongest, most resilient pumpers I know will get frustrated and want to quit, but ultimately, all of the work is worth it. We take a deep breath, pick ourselves up and keep pumping.

❤️ Michelle

How to Beat Cancer

I hope that when I die no one ever says I lost my battle with cancer. To lose to cancer would be to give in to the fear, to die before you’re dead.

Every day I wake up, and every breath I take is beating cancer. Every moment of joy is a win over cancer. Rejecting fear, and living a life full of love and gratitude is a victory against cancer.

Though I can’t be cured, I hope to keep “beating” cancer for years to come. Fighting isn’t all about treatments and surgeries. It means living courageously on your own terms.

Cancer can take so much from us, but we can still refuse to lose. What we do with the time we’re given is how we truly beat cancer.

15 Months on the Cortisol Pump: Before and After

I’ve had my hands so full with my pheo surgery and recovery, my one year “pumpiversary” came and went! It’s now been over 15 months since starting the cortisol pump.
So what’s changed?

Prior to the pump, I was taking a combination of oral steroids. As much as I researched, tweaked, and titrated the dosage, I still had a poor quality of life. I could do a few simple tasks around the house. On a good day, I could leave the house with help from my husband, and complete a quick errand such as the grocery store or library. After venturing out, I would be completely exhausted for the rest of the day. Possibly the next day too. I spent the majority of my time in bed, though I hardly slept at night. I had all the symptoms of low cortisol, while still getting many of the cushings-like side effects of too much cortisol. My adrenal insufficiency was very poorly controlled. I felt guilty I couldn’t help my husband around the house or take care of my kids. I was jealous of people that could walk, ride bikes, go out, shop, and basically lead normal lives. Mostly I felt like my family deserved better.

Before the pump, I was sick all the time.

 Looking back at photos, nearly every picture I took was from my bed. A picture of my window, my nightstand, my kids near the bed or in the bed with me. That was my limited experience of the world. Every little cold or illness going around, I would always catch. An illness that the rest of my family could kick in a couple of days, would bring me down for weeks, or send me to the hospital. I knew I couldn’t live the rest of my life like this. I was still recovering from over 6 months straight of respiratory illness when I finally started the cortisol pump. My steroid dosage the day before the pump was equivalent to 188mg of hydrocortisone. I saw an immediate decrease in my body’s steroid requirement. As soon as I started on the pump it was around 80mgs, then 75, and in a few months it was into the 60s. Currently 14 months later, I’m at 48mgs. That’s 140mgs less than when I started, and I’m still improving! The Cushing’s symptoms I once had, are completely gone, and it feels great!

The best part is how much this has changed my daily life. I rarely have sick days anymore. I still need to rest more than most people, but compared to my pre-pump life, I’m so much more active than before. I’ve accomplished so much in the past year! Those simple tasks I struggled with before, are hardly any problem at all. I can run several errands a day on most days, I can attend events, festivals, family gatherings, take my children to appointments, etc. I’ve traveled both domestically and internationally. I’ve been to Washington DC twice, had a major surgery and recovered smoothly. Not even a month ago, I flew to Canada solo, and pretty much had the best time ever. I’m actually out living and experiencing life now! I can’t tell you what a precious gift this is!

I don’t want to give anyone the wrong idea, the pump has not been a quick, easy fix. I didn’t start pumping and suddenly feel like Wonder Woman. I had to work on the delivery rates with zero help from an endocrinologist. I had to rebuild my body and the strength I lost being sick and sedentary. I had to make strict changes to my diet, learn what to eat and when to eat it. I’ve had to adapt to my condition, learn to plan and anticipate what my body needs in every situation, 24/7. Even so, there are still sometimes days my body forces me to rest, but thanks to my pump and a lot of hard work, I have less and less “forced rest days.”

This fall, my goal is to keep conditioning my body and regaining my strength. I did find a new endocrinologist locally who ordered the cortisol testing I need to help me fine tune my pump’s delivery rates. Hopefully with this data I can continue to see improvements in my quality of life while mitigating the side effects of steroids. I’ll also be going back to the National Institutes of Health to follow up on the pheo and MTC situation. With any luck, I’ll be confirmed pheo-free and they’ll have a plan for dealing with the medullary thyroid cancer.

So much has changed in 15 months, it is just unreal. I’m grateful for where I am now, and I’m optimistic for what the future holds. Slowly but surely, I’m reclaiming my life and its a wonderful feeling! Thank you to my friends and family that have given me emotional support on this journey!

💕Michelle

Life Without Pheo? A Post Surgery Update

It’s been 2 months since my surgery. For anyone just tuning in, I have a genetic condition called MEN2a. I’ve had it my whole life, but wasn’t diagnosed until 2011. Since then I’ve had six surgeries related to MEN2a. Most of them have been to remove pheochromocytomas

This surgery was different. This time I wasn’t messing around. I went straight to the leading experts in the country, at the National Institutes of Health, so that I can maybe have these mean little tumors gone for good. I was naive in the past. After every surgery I foolishly thought I would be cancer and tumor free. I’ve come to realize over time that it’s not so easy. Unfortunately MEN2a will be a part of my life forever. The good news, both pheochromocytomas and medullary thyroid cancer tend to be slow growing tumors relative to other cancers. The bad news is that both have very few effective treatment options. The typical chemo and radiation are ineffective with these, and would do more harm than good. Really the most effective treatment is surgery. It’s traumatic, and it’s hard on the body, but as long as my tumors pop up in operable places, that’s the best case scenario.

So are my tumors finally gone? 

I’m not going to jump any conclusions like I did after past surgeries. God willing, all the pheochromocytomas are gone for the time being. That was the goal of the surgery. However, as has happened in the past, they can grow back. What I can say, is that I’m feeling very well. I haven’t had any of the painful pheochromocytoma symptoms. My heart isn’t acting crazy lately. My 8 inch abdominal incision is healing well and I’m in very little to no pain. I can’t express what a good feeling this is!

Will this be my last surgery?

Probably not. I still have medullary thyroid cancer metastases. The plan currently is to return to the National Institutes of Health for further evaluation and to come up with a treatment plan. I really don’t know how they will choose to handle this. The good news is that at this time, the MTC isn’t causing any symptoms. I can sort of trick myself into forgetting it’s there. 

I will go back to NIH in 3-6 months for more testing. In the mean time, I need to follow up with an endocrinologist locally. This is not an easy task for someone like me. I can’t see just any endocrinologist. While they are all technically “specialists” there are very few that have expertise in a condtion like MEN2a. To further comlicate things, there is literally no one else with the combination of rare conditions I have, plus using a treatment method as unheard of as the cortisol pump. I’m deep in uncharted territory here. I’ll have to settle for a doctor that is experienced with most of these conditions, and willing to learn more about the rest. Currently, I’m scheduled to see an endocrinologist at UT Southwestern. Unfortunately, they do not work with my insurance company, and my primary doctor was unwilling to help me work out a solution with them. So it looks like I will be paying out of pocket to be seen and treated here. Yikes! I have no idea how I’m going to afford it, but if God guided me here he will make a way.

💕Michelle 

We Finally Know What We’re Dealing With: An Update

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It’s been about 18 months since I found out the biological marker for my medullary thyroid cancer was highly elevated and climbing. Its been 15 months since a suspicious mass was seen on my right adrenal bed, completely by accident.

I’ve seen several doctors in the months since then, searching high and low for answers and treatment. They have all been bewildered. I’ve watched them squint their eyes as they flip through the notes and images. It’s like they are trying to decipher a  language they have never seen before. Their interpretations lacked confidence and their conclusions were often conflicting. I would always leave these appointments with more questions than answers.

What is going on with me?

Today I met with a team that was able to spot my tumors with eagle like precision. They had the technology, and expertise. We finally know what we’re dealing with, but as with every appointment I’ve ever had since diagnosis, nothing ever goes as expected.

Today I got answers.

Yes, there is a tumor on my right adrenal bed. Yes, it is a pheochromocytoma. Even with their cutting edge imaging technology, it is unclear if this is one big tumor or a cluster of 3 tumors. In either case, surgery is advised. There was also a small mass on the left side of my hip. This mass responded to the 3 radioactive contrasts in the same way the pheo did. This would suggest it is also a pheochromocytoma. There were also at least two small masses in the upper part of my chest. These are most likely metastases of my medullary thyroid cancer, and my blood work would suggest the same conclusion.

I will come back to the National Institutes of Health for surgery. This is good, as surgery is my best chance for “cure.” I will meet with the surgical team and discuss the details with them. As for the medullary thyroid cancer, I will have to seek a specialist in this cancer to address this issue.

Overall this was a very positive meeting. The doctor and his team were incredible. I received straight forward, experienced answers for the first time ever. The outcome was not what I anticipated, but of course, that’s how the rare life goes.

I’m thankful that they were so thorough, and found tumors that could not have possibly been found at any other facility. What they discovered here at the NIH will have a positive impact on the outcome of my future.

Michelle