Finally Some Answers: An Update


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!


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:


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:

Disaster Information for People With Chronic Conditions and Disabilities

Stay safe friends!


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.


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?


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.


👧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.


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.


👪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.


🏠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.


Take it easy friends,

Respiratory Virus: What I’ve Learned


I posted recently 3/16, (in my support group) about the respiratory virus I caught from my 3yo. 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 3yo (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.)

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.


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.

Pics 3&4 Journal and Resting HR March

So what about the horrible steroid side effects? LOL! None! 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” (lol pfft,) or anxiety. Its also worth noting stress dosing does not seem to raise my BP, but 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!


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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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.


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.


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!! This is huge for me, to go from fearful silence, to sharing my feelings with 80 million readers world wide. My disease threatened to rip my life away, but what was meant to destroy me has instead empowered me.


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,


A Health Update: Where I’m at, and where I’m headed.


One of the reasons I started this blog was to give health updates. I’ve yet to use it for this purpose, but today I am going to be more personal and talk openly and honestly about (part) of my health.

I was hospitalized over Christmas for a respiratory virus that was complicated by my adrenal insufficiency. This turned into pneumonia, which was thankfully cleared up with antibiotics. I seemed to improve after leaving the hospital, but I spoke too soon. Maybe I was too active? I wound up back in the ER new years eve. I am grateful I did not need to be admitted the second time. Truthfully I don’t think I could have handled two consecutive holidays in the hospital.

I’m dealing with some emotional baggage from all of this. I’m sick of being sick. I want to leave my house. I’d really like to enjoy the warm Florida winter walk the beach, and gather sea shells. Really at this point anywhere would be great, or even just having the ability to do normal household chores would be a welcome change. My husband is a saint and is taking care of me and the kids right now. Frankly though, I don’t want to be taken care of, I want to be healthy. I have to keep reminding myself that this is only temporary, discouraging, but temporary. Perhaps I should revisit my previous blog post and work on some self love.

On the the plus side, I woke up with an appetite today! I had the energy to make my kids a real, non-cereal, breakfast. I made myself a healthy high protein/high calorie meal too. I’ve lost 10lbs since my hospitalization at Christmas just a week ago. If we’ve ever met, you might have noticed I don’t have 10lbs to lose, especially that quickly. My steroid dose has more than tripled, which would normally cause weight gain so I’m stumped on this one. The appetite is an encouraging sign of improvement though.

I was prescribed a nebulizer to help my lungs. There was some difficulty getting the nebulizer delivered because of the holiday, but I was able to borrow one, and it seems to be helping. It works better than just a few little puffs on an inhaler.

I’ve been using my blog and my support groups as a distraction, and what a great distraction they are. Helping and encouraging others effectively gets my mind off my own problems. Maybe this is my purpose now?

I hope that very soon this will all be a distant memory. Another lesson to add to a ever growing list.

I do have something to look forward to this year. Next month, I will be visiting a new endocrinologist. I had a bad experience with the last one, and I do have some residual anxiety from that. However, I remain optimistic that a better endocrine doctor will translate into a better quality of life for me. I’ve got some scary questions hopefully he will be able to answer. I won’t go into that situation here yet, but good vibes are appreciated. I will also be making my case for subcutaneous hydrocortisone pump therapy at this appointment. For those who have never heard of this, it is a insulin pump that infuses the corticosteroid hydrocortisone, which is bio identical to natural cortisol. I have not been able to tolerate this medication orally, and this treatment would instead infuse the medication directly into my body. It could be a turning point for me if the doctor is cooperative. If not, I am not a quitter. This therapy is very new and even experienced doctors seem skittish about it, though studies are very promising. I cannot simply go find a doctor using this treatment as the patients are told not give out names. It will be a fight whether with the doctor, or with insurance, or learning the therapy itself, but this is my life and I am not backing down.


Thanks to everyone for their love and support. You really keep me going and I am very grateful!