My First Days on The Cortisol Pump

As you may know, I have been working to switch a new treatment, the cortisol pump, to help me manage my adrenal insufficiency after my last adrenalectomy in 2014 made me steroid dependent.

What is a cortisol pump? Technically, there is no such thing as a cortisol pump. It is an insulin pump that has been filled with SoluCortef instead of insulin. Currently, there is no product labeled a “cortisol pump,” but that doesn’t negate the benefit the pump can bring to corticosteroid dependents.

image

*Disclaimer: While I did research this treatment extensively before pursuing it, I am still a newbie at this, and by no means any kind of expert at anything. None of this is medical advice, just what I’m experiencing as I begin my journey with the cortisol pump. 😀

Before the cortisol pump, I was on a combination of oral corticosteroids. Hydrocortisone alone was a roller coaster, Prednisone alone was not much better, adding long-acting Dexamethasone helped a great deal, but it’s flat, non-peaking action came with its own challenges. What was too little at one time of day, was too much at another, with no way to adjust. I designed a regimen that mimiced circadian rhythm as best as I could, but it was still not right. The different timing of all the kick-ins, and the durations of these oral medications made my schedule very complicated, and still there were times of day I found myself under or over replaced. I think the regimen I used was great practice for the pump, it allowed me to really see what times of day my cortisol needs change, when the demand ramps up and when it tapers down.

I decided to start my pump a couple hours before my long-acting oral steroids would wear off, like training wheels, I’d see how I did and as the oral meds left my system, then pump solo. So first I had to mix the SoluCortef. I have no medical training, and have never mixed an injection, so this was new for me. Not difficult, but new. A little tedious. It takes 3 vials to fill my pump’s cartridge. I followed my pump’s on screen instructions, along with a video tutorial. For my very first inset, I managed to hit a tiny vein in my stomach :(, AND I forgot to take the paper off the sticky part, (lol) so it pulled right back out. I didn’t bleed or hurt, but it left a mark. New spot, new inset, the second try was perfect! 😀

Do I feel any different? Kind of funny at first, there’s a slight metal taste in my mouth, like when nurses flush your IV line, but not as extreme. I sat in bed and watched more tutorials. THEN, I got up and made dinner. 🙂 Yay!! BEFORE, when I was on oral meds, evenings/dinner time was my one of my worst times of day. It was right when one dose of dexamethazone wore off as another would be kicking in, and I’d usually have to stay in bed and hide. The only way I could actually make dinner for my family was to prepare it ahead of time when I wasn’t feeling bad, either have already made in the slowcooker, or pre-prepared in the freezer. So the fact that I was able to cook a meal at this time of day, was encouraging. 😀

I started feeling weird while I was cooking; foggy, emotional, I felt slow, like I was underwater. I did a quick rate adjustment for that time block, and in a few minutes I was feeling alright. Quick adjustments are really a huge benefit to the cortisol pump. With oral meds, all you can do is take more pills. You have to just wait and be miserable while they kick in, and you don’t have much control over the amount. For example, a half pill might be too much, a quarter pill not enough. You wont even know until you wait for it to kick in, then if it’s too little, you are stuck waiting for more meds to kick in while you decline, and if its too much you’re stuck with it for the next few hours with no way adjust. Not anymore with the pump.

I knew the pump wasn’t going to be magic. It definitely isn’t. Managing adrenal insufficiency is still a matter of keeping blood glucose stable, keeping electrolytes balanced, and caring for your overall health needs. The pump doesn’t fix these things, all it does is deliver cortisol on a preset schedule. You still need to know when to eat, what to eat, always stay hydrated, and take care of your body, or you’ll still find yourself feeling crappy. Also keep in mind, any other medical conditions you have, you will obviously still have, and they will still affect your adrenal insufficiency. It’s not a cure for anything.

Saturday was my first full day pumping, and we had a family birthday party for the kids, so this was a real test. I slept only slightly better than usual, which is hardly at all, my night time rates definitely still need adjusting, but I got up and everything was okay. I actually found myself singing as I got ready, but maybe I was just in a good mood. We won’t blame the pump for that ;). The day went well, I didn’t do anything crazy or have any super powers, but I felt alright and functioned pretty well. I didn’t have any low cortisol symptoms all day which is pretty flippin’ incredible if you ask me. I find I do still get cranky when my blood glucose is low, still very sensitive to spikes in BG, and still get light headed/headache when I don’t get enough salt, but those aren’t really cortisol issues as much as they are “Michelle, have a snack and take a salt tablet.” Problem solved.

My first thought was “Why aren’t they doing this for everyone?” but I can see why some would not be a good candidate for the pump. For example, anyone who has some, or could regain their adrenal function, might not find this treatment worth the time and expense. Since I’m post-bilateral adrenalectomy, it’s safe to say adrenal function is not coming back. I often see people in support groups say things like “too much cortisol feels exactly like too little”…I think the pump going to be kind of tough to manage for those who can’t tell the difference. Also, if you have to call your endo every time you need to take an extra dose…this could be tough for you. Quick adjustments are the biggest perk I see to this, so it helps to have some degree of autonomy. If you do not trust yourself to make adjustments, or your endo doesn’t allow it, this might slow down your progress with the pump. Also, those who are not not technically inclined might have some difficulty operating the pump at first, but it shouldn’t be too tough to learn. 😉

So I’m finally pumping, and so far so good. Hopefully my inset site keeps working well, and nothing unexpected happens. I’m just starting out, but the first day I saw an immediate decrease in steroid dosage when going from pills to pump. Keep in mind MANY other factors could have contributed to the decrease, and my dose was very high to begin with. “Results not typical.” 😉

Thank you to everyone that helped me get this infusion pump. Everyone that gave me advice, support, and donated. It was an uphill battle, but I had a lot of amazing people encouraging me along the way. I have a lot of goals for the future I hope the pump will help me accomplish. I want to make up for the time I lost, but the next step is preparing for my pheochomocytoma surgery and hopefully better cortisol delivery will help with post-op recovery.

Thank you my friends! 😀

💕Michelle

Advertisements

Finally Some Answers: An Update

image

I made it through another long distance appointment! I’m pretty pleased that I’ve been able to manage these trips as well as I have. They take a lot of careful preparation, but I can do it as long as I plan for every scenario. Adapting and working around challenges seems to be just as important as getting better in the chronic illness game.

I met with a surgical oncologist and we discussed my imaging results. At my last appointment, with my other doctor, I left more confused and worried than I started. This latest appointment finally brought some answers, so here is what we see going on so far:

Medullary Thyroid Cancer appears stable, there are some lymph nodes to watch, and labs still look on the higher side, but no tumors are seen right now.👍

-The nodule inside my right lung does not appear to be a tumor.👍

-There are 2 tumors:

1. A pheochromocytoma on the right adrenal bed. This is where my adrenal used to be, and where I have had pheo occurances previously. Left side is still clear after 5 years.
2. A tumor in the paraspinal region, behind my lung. We don’t yet know what kind of tumor this is. There will be more imaging to investigate.

-We talked about the “the suspicious liver lesion” mentioned in the MRI summary, which he says is actually the same pheo BEHIND the liver. The liver itself looks okay. That’s not a separate tumor. 👍

So instead of a bunch of vague, scary info, I now know more about what we’re dealing with. Next step is MIBG imaging of the tumors. This is a test specifically for pheochromocytomas. This will tell the doctors if the tumor in my chest is also a pheo, and should rule out any other pheos hiding.

The surgeon told me these are both in operable areas. Of course I’m not excited about the idea of more surgeries, but still, that is very good news. Both sites are operable and manageable. So the adventure begins again, surgery with adrenal insufficiency is going to be a new experience for me, but we’ll cross that bridge when we get there. Surgery is my best chance for long term management of the tumors that come with MEN2a, and best chance at a normal life expectancy. I know I’ve said this every time, but fingers crossed that maybe, just maybe, these tumors will stop coming back this time. I know I’ll always have to monitor and manage my MEN2 the rest of my life, but I still would like to stop this cycle of surgery every year. Maybe a few years off this time?

Overall, I’m happy with how the appointment went, and should have my MIBG imaging scheduled soon!

Stay healthy my friends!

💕Michelle

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

Good News, Bad News: An Update

I successfully made it to Tampa and back today solo, with respiratory infection in tow. Today’s trip would not have been possible without Cortef as there were some surprises. The trip there was uneventful, enjoyable even, despite it being before dawn.

Good and bad news at the appointment. Good news, they found the pheochromocytoma causing my symptoms. The obvious bad news is this means I have a confirmed active pheochromocytoma. Not really what I wanted, but at least I don’t feel like a crazy person anymore with unexplained episodes.

Bad news, they also found a paraspinal mass and a “suspicious liver lesion” neither of which I was expecting. Now we have to figure out what these are and what to do about them, as well as the nodule in my right lung we already knew about. On the brightside, all of these “issues” as my doctor calls them, are “stable” meaning growth is minimal and nothing seems to be growing aggressively.

I have an appointment with an endocrine surgeon on May 31, and hopefully we’ll get a plan of action going.

I did ask him about the HC clearance test to get my cortisol pump set up.  I told him about my unexplained increased steroid requirement and the symptoms I encounter. He kept asking what my regular dose was and I admitted I don’t have a regular dose anymore. I told him I’ve always needed at least double the standard dose and even then that is barely surviving. He thinks the “issues” we discovered could be causing or at least contributing to my increased steroid requirement. He is going to do his best to help me with this as well.

I feel completely exhausted mentally and physically, but I can’t seem to sleep. On the drive home the only thing on my mind was “pheo.” I kept going back and forth between “why” and “it’s not so bad.” I suddenly feel like nothing is important anymore. I’m just going through the surgery motions again. An odd deja vu feeling that puts my stomach in knots. This is my 4th round with pheos. This will be the first time with adrenal insufficiency  though, and it’s a scary thought.

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?

image

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.

image

👧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.

image

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.

image

👪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.

image

🏠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.

image

Take it easy friends,
💕Michelle

Respiratory Virus: What I’ve Learned

image

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.)

image
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.

image
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

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…

View original post 353 more words

Update: The Endo Appointment

I’ve become rather hermit-like in the last two weeks, and took and unintended facebook break. I’m okay, not dying or angry at anyone, just exhausted. I’ve been feeling okay otherwise. 😉

I had my long awaited endocrinologist appointment. Four months of anxiety and preparation down to one day. I was nervous since I’ve never met this doctor. What if he disagrees with how I manage my conditions? What if he’s rude and egotistical? Fortunately, that wasn’t the case and it turned out to be a pleasant trip. The drive was long, but the weather was perfect.

The doctor was polite and withheld his opinions. He seems pretty old school, which is not really to my advantage with a rare condition. Surprisingly though, he is supportive of the cortisol pump. He is insisting I contact their diabetes clinic for pump training first. I’m currently working to get that scheduled, and very excited at the prospect of improved quality of life soon. ☺

My imaging and lab results also came back. The ultrasound of my neck did not reveal anything abnormal, but the CT scan did confirm a nodule in my right lung. The lab work doesn’t provide much insight, other than my cancer markers are elevated. I’m being referred to another specialist to look into the issue further.

💕Michelle

A Quick Update

I’ve had a lot going on lately I’ve been refraining from sharing until I got my lab results back and knew more. Well, the results are in, and they are not what I wanted to see. I don’t know why I’m shocked. I expected them to be this way.  Allow me to elucidate.

I’m nearly recovered from my respiratory illness over the holidays. I’m breathing much better and getting back into my typical routine. I had some previous lab work that was a bit concerning, seems my cancer marker (calcitonin) is significantly elevated. “Elevated” is not necessarily alarming as long as it isn’t increasing. However, my most recent results show that it is in fact, increasing. I’ll be going back to the cancer center where I am already an established patient for further evaluation.

While in the hospital over the holidays, I had multiple x-rays of my lungs. These x-rays imaged a small mass. Its difficult to say what it is from an x-ray alone. However, the location is near my previous recurrent pheochromocytoma. I have been experiencing very mild episodes that are reminiscent of the tumor’s previous reoccurrence. My lab work does indicate some abnormal levels of metanephrines, though not high enough to conclusively diagnose a pheo without further testing and imaging. I’ll be requesting more testing on both issues ASAP, and I am still patiently waiting for my endocrinologist appointment in February.

image

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!! 
image

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,

💕Michelle

http://themighty.com/2016/01/when-doctors-get-excited-about-how-rare-i-am/