The Mental Side Effects of Steroids… What Doctors Don’t Tell You

Hydrocortisone: The Steroid That Can Make You Feel Crazy

All medicines come with side effects, some good, some bad. The corticosteroid, Hydrocortisone, is no exception. When I started taking Hydrocortisone, I remember reading about the physical side effects and thinking to myself “Well, this is a medicine that is literally saving my life, so I can deal with a few side effects.” However, neither one of my doctors or my pharmicist warned me about the psychological side effects of Hydrocortisone, so when those popped up, I was left feeling confused…and yes, I’ll say it, I ended up feeling “crazy.”

At first, I felt super happy. My anxiety had decreased, I felt less “sick,” I had more energy and felt somewhat normal again. I had a euphoria that felt almost as if I was “high on life.” What I didn’t realize is that Hydrocortisone actually does affect the areas of the brain that manages the regulation of serotonin and dopamine, the “feel-good” hormones. Feeling happy is a great side effect to have. However, as time went on, other psychological side effects popped up that were not only startling but also very scary. And what scares me even more is the fact that not one doctor that I have seen, both in the hospital and out of the hospital, since being on corticosteroids, has told me that there are mental side effects of being on them. Not to completely pass blame to doctors, as I think a lot of it has to do with lack of knowledge.

The Subtle Mental Side Effects

Side effects can have a wide spectrum, so when you do experience having them, you may not think of them having anything to do with a medication that you weren’t told would cause any mental side effects in the first place. Subtle side effects that I had were anxiety, agitation, irritability, insomnia, lack of concentration, lack of focus….just to name a few. When I talked with my doctors about these symptoms, I was told to take a sleep aid, to take things for ADHD, I was put on two separate anxiety medicines, and even on an antipsychotic medication. I finally drew the line when my doctor wanted to add an antidepressant into the mix.

The Not So Subtle Mental Side Effects

When I was on oral Hydrocortisone, I was sick a lot. I spent a lot of time in the hospital and even though my body required high doses of steroids while I was in the hospital, the doctors didn’t warn me about the psychological side effects of being on high amounts…and more importantly, what can happen when you go from being on a high amount to all of a sudden going back to a normal dose, without tapering. When I was in the hospital, and on high amounts, I felt manic and didn’t sleep. Whenever I went home and went down to my normal dose, I felt lethargic and depressed…thinking it was just a normal emotional response from being in the hospital.

And then…one of the worst possible mental side effects appeared into my life overnight… corticosteroid-induced temporary psychosis…

Choo Choo….All Aboard The Crazy Train

Have you ever wondered what it would be like to wake up one day and be Superman or Superwoman for a day? How about for a few weeks? Imagine feeling the happiest feelings you’ve ever felt in your life and how nothing and no one could take that feeling away from you. Being on top of the world, not needing sleep, having zero fears, laughing all of the time, spending money like there were no limits on your bank account, feeling like you no longer “need” to take any medications, including your corticosteroids…  Sounds great, right?

Although I have never experimented with drugs, I imagine that you could probably compare it to the feeling of being “high” 24/7. I felt like my brain was working at top speeds. Not only my brain though…everything I did was at top speeds. I worked a lot of extra hours, I was creative, and I felt like the Energizer Bunny. I had no idea where this “new me” came from, but I loved her! And at first, my family also loved her. My kids thought that I was hilarious and really fun to be around. They loved that I was spending a lot of money on them and had a Y.O.L.O outlook on life.

But after a while, my husband and family started getting worried about me. I did a lot of online shopping and would unintentionally order multiple items, thinking that I only ordered one, but when packages just kept arriving, I justified “needing” 20 new pillows, 2 different colored sets of pots and pans, 3 different pairs of sunglasses for my husband, and a lot of other things that I can’t even remember. I gave my daughter my debit card and told her to go on a shopping spree, bought my son a cell phone for Christmas in “October,” took my daughter to get a piercing just because she wanted one, and was about to just randomly get a new tattoo, until my husband called and the kids told him what I was about to do. That night, he “grounded” me from my debit card and my car keys.

I also abruptly stopped taking my anxiety medications, and got to the point of not taking my Hydrocortisone like I was supposed to either. I thought that my Adrenal Insufficiency was completely healed and that I did not need Hydrocortisone anymore, but I didn’t tell anyone. I kept having symptoms of being low in cortisol and when my husband asked when the last time I took my steroids, I couldn’t honestly remember. At one point, he had to threaten to give me an emergency injection because I refused to take my pills.

Once he realized that I was putting my life in danger by not taking my life-saving medications, he called my doctor. She basically told him not to worry, and explained to him that I was experiencing a corticosteroid-induced temporary psychosis from going from a high dose in the hospital to my normal dose, without tapering. At that point in my treatment, I had no idea what tapering was. My doctor had never mentioned it, the doctors in the hospital never mentioned it, and I was following their orders of going home and going back onto my normal dose. She did order an MRI of my brain to rule out a tumor, but told him that we just had to “ride it out.”

Please Fasten Your Seatbelts…The Plane Is About To Crash

Ok, so imagine having extreme mania (on top of the world, no fears, tons of energy) when you went to sleep one night….and waking up the next day feeling scared of your own shadow, lethargic and completely depressed. When the psychosis wore off, it wasn’t something that happened slowly and over time. It was literally like someone had gone into the electrical box in my brain and reset the breaker, but decided to leave the switch off for a while.

I literally would sleep for 20 plus hours a day, only really waking up to take my medications and sometimes eat food.  When I was awake, I was full of anxiety and depression. I not only was terrified of talking to people, going places, but I was convinced that I was dying. Thankfully, I was never suicidal, although I have read about people becoming suicidal, as another mental side effect. Because we are so wired to listen to doctors, the advice of just “riding it out” was what my husband did.

It wasn’t until recently, when I was researching the psychological side effects of corticosteroid use, that I discovered that there are recommended treatment options to safely bring a person out of the corticosteroid-induced temporary psychosis.

Does The Story End There?

I wish I could say that was the last time I experienced any kind of mental side effects from the steroids. Unfortunately, I have had my share of them…. Having Adrenal Insufficiency is a very difficult disease to manage for most people. Just when you “think” you know everything there is to know, something will pop up, leaving you questioning everything you know about it. Like I said, I recently was researching the psychological side effects of corticosteroid use. I definitely “knew” that there was a connection, but honestly only thought about the temporary psychosis part being an issue. After that episode of temporary psychosis, I still had side effects…I just didn’t link them to the steroids.

Over the past few years, I have continued to have issues with the “subtle side effects” and totally brushed them off. I have had a LOT of things go medically very wrong with this disease, and have been paralyzed twice with the inability to speak, and have also “died” and had to have a major emergency surgery to keep me alive. This brought on severe PTSD, but even with therapy, I still had those “subtle side effects.” This past summer, when I switched from oral Hydrocortisone to the pump, I finally felt amazing. Things had started feeling “normal” again. My “subtle side effects” had been diminishing.

But right before I had started on the pump, I developed an infection in the hospital, which did not go away. My doctor “guessed” at the kind of infection I had but never took a culture of it, and I followed the recommended protocol of increasing my steroids with a triple dose while I was on antibiotics. The infection persisted, so I was on several bouts of antibiotics. The high amounts of steroids lead to another case of corticosteroid-induced temporary psychosis. Although it was not nearly as extreme as the first time, and it took longer to appear, and didn’t last as long, it still made a major impact on me emotionally. Since the severity was less, it was harder for my loved ones to recognize and be sure that it was actually “psychosis” that I was dealing with. Although I kept denying that I was in “psychosis,” I still was unable to think “clearly” and I ended up making the decision to go from a high amount of steroids down to my normal dosage overnight.

This made me “crash” right away. The “crash” symptoms were the same as before, but since I had done a drastic decrease in my steroids, and I still had the infection, all of a sudden, I had extreme physical symptoms that I was dealing with at the same time. I was then hospitalized for two weeks, had very rare, unexplainable physical side effects from my infection and ended up coming home with multiple holes in my body and a home health care nurse coming to my home to help me recover…all while still dealing with the “crash” emotional issues. PTSD came back full swing, I had severe depression and anxiety, I completely withdrew from social media and from any social interactions with people. I was totally housebound once again and just the thought of getting into a vehicle brought me to a full on panic attack and endless tears.

How could I have allowed this to happen to me again? I was so distraught that I didn’t even have the strength to seek out help from the people that helped me so much in the past. When I was in the hospital, I luckily did have a doctor who seemed very knowledgeable and told me that this happened because I had not tapered. We had a long discussion about the emotional side effects it caused for me and what to do in the future. It still took months for me to come to terms with things. I wanted so badly just to return to a normal dose and not be dependent on a higher dose. However, I knew that with the trauma that my body had been through, I had to be patient and taper down very slowly.

Knowledge Is Power

Since I got home from the hospital and got to the point where I was not crying at the drop of a hat, I was able to monitor my emotions better and take control. Although I did not realize it at the time, the “subtle emotional side effects” became my focal point of things I wanted to conquer and take control over. I reached out to a trusted friend, who helped me come up with a good dosing schedule, I did a lot of self-reflection of what I wanted in life, I read a lot of self-help books, watched a lot of funny movies, and just focused on being happy and present. I evaluated every single thing that was going into my body, whether it was medications, supplements, food, etc. If it didn’t “feel” right, I cut it out of my life. Anything negative that I was holding onto was the first thing to go.

I was then able to completely get off of all prescription medications, including my anxiety medications, except for the steroids. I added in extra supplements and antioxidants that helped promote healing. I no longer need a sleep aid in order to sleep at night. I’ve done a lot of research about the emotional side effects of steroid use, so I’m very careful now with changing my dosage amounts, even when my body is requiring more coverage.

And now that I do know how they specifically affect me, I’ve been able to share my knowledge with my husband and my family so that they can help me to identify any red flags, if they happen to come up in the future. Every single hour can be different for someone with Adrenal Insufficiency who is on steroids and needs to be able to “live” their lives. I am now at a point in my life where unless something pretty major comes up, it’s almost as if I don’t even have the disease. I’m personally conscientiously aware that it is still very real and very much a huge part of my life.

However, for the first time in years, my husband and my kids are able to breathe again. They no longer see me as being “sick.” We enjoy life as much as possible together and once in a while, when I catch a virus or something, they ask me if I’m making sure to updose, not only for the physical aspects of it, but also because they know what it does to me mentally and emotionally.

And this, my friends, is my “new” normal.

Addison’s Disease IS Hereditary…. Rest In Peace…Grandma Diane

“Call it!” Grandma Diane died one evening in New York. She was 53 years old.

Getting a diagnosis for Addison’s Disease is difficult. It takes years. Most are misdiagnosed. This was the case for Grandma Diane. Originally diagnosed with Lupus, she was placed on Prednisone, but as her symptoms changed, she was formally diagnosed with Addison’s Disease. She still led a good life. She was happy. She had had a successful career, she had two kids, and two grandkids. She now enjoyed going antiquing and researching family genetics. She had a boyfriend named Bob and life was going well. Until it wasn’t.

Grandma went to a family gathering one evening. A couple of family members had come down with a stomach virus. To an Addison’s patient, your immune system is compromised so much that you’re more susseptible to catching a cold or stomach bug when you come into contact with it. And low and behold, that’s what happened. The flu bug.

Grandma went home and rested. But that flu bug decided to rear it’s ugly head. She became very sick. Home remedies did not work. One evening, she was on the phone with Bob, her boyfriend of several years. She felt very weak and ill. She decided to take some Prednisone but after attempting to look for it and not finding it, she just decided to sit and talk to him. And then the phone dropped….silence. Bob immediatly called 911 and rushed over to her house.

She was transported to the hospital. Uncle Doug and Uncle Derek were called. She was in a coma and fighting for her life. And then our phone rang. Uncle Doug let Mom know of Grandma’s medical situation. She immediately booked a flight to New York. For three days, Mom didn’t leave her side. She was stable but still fighting. They were treating her stomach bug but no one looked at her medication list to see that she was on Prednisone. No one asked what medical conditions she had. This is all too common in the hospital and something that needs to change.

Day 3…vitals are good. Still in coma. No signs improvement. The day turns to night. All the family members were there. Mom was sitting right next to her, talking to her. Then…Grandma woke up. She sat up, looked Mom in the eyes….into her soul…almost like she was trying to tell her something, and then she layed back down, and her heart stopped. “Call it.” Grandma Diane was 53 years old. She was surrounded by family.

There was no autopsy to be done. No point really. Grandma Diane died of an Adrenal Crisis. Yes, Addison’s is hereditary. Mom tested postive for an autoimmune disorder. She will be tested for Addison’s very soon. I am having my children tested. If this disease has taught me anything, it’s taught me to take good care of my health, to educate myself on when I need more meds and how to handle when I do get sick. And it has taught me that life is short. So now I’m living my best life….🦋💁🏼‍♀️

The Spoon Theory Explained

So, this is the Spoon Theory explained. Basically, a healthy body has unlimited amount of spoons….aka cortisol…aka energy. Wouldn’t that be nice?

This is how I explained my illness to my kids so that they could understand at any moment how I was doing.

I took out all of my spoons in my kitchen drawer and sat down with each kid.

I started with Austin because he not only was the oldest but he was the one who least understood it

I told him he was just diagnosed with AI. Congratulations…you get 20 sooons per day!!

I then told him to tell me about a typical day for him. He started with “Well, I wake up.” “Ok great…one spoons please!” “Woooah…hold up…just for getting out of bed?” “Yes son, you use spoons for every single thing in your life.”

He carried on. “I then make breakfast.” “Ok, that will be 3 spoons!” We carried this on for quite some time. He then was all of a sudden was out of spoons and still had plenty to do in his day. “What do I do now?”

I explained how he would need to make a choice on whether or not to borrow from tomorrow’s spoons. He agreed that he did but I warned him how he would feel the next day.

I then explained that any kind of stress, good or bad, also took spoons.

He started crying. “Mom…I had NO IDEA how living with this disease impacted you soooo much!”

Here’s to wishing you day filled with spoons my friends!! 🥄🦋🥄🦋

Top 5 Tips To Avoid An Adrenal Crisis…And What To Do If You Are In One

So, you have Adrenal Insufficiency and are completely steroid dependent for the rest of your life. As if that is not scary enough, NOW you have to make sure that your levels of cortisol are always under control so that you avoid an Adrenal Crisis and even worst, coma or death. Since I have unfortunately been there way too many times, I figured I would compile a list of the top 5 tips to avoid an adrenal crisis. Also, because we are all human, it is inevitable that at some point you’ll be in one, so I’ve included what to do at that point….

Top 5 Tips To Avoid An Adrenal Crisis…..

  1. Make sure your daily steroid intake is the correct dose for YOUR body. This may seem like a no brainer, but I see this all of the time. How much do you truly need?? Too little and you’ll have low coritsol symptoms. Too much and you’ll be over replacing. The best way to see how much your body needs is a 24 hourcortisol test. This can be a challenge, however. You really have two options. You can do a “day curve” test, which is highly recommended. Or…you can opt to take a 24 hour test on your own through urine. You then ship it off to the lab and they send you your results.
  2. Make sure your steroids are being delivered when your body needs them. Also seems like a no brainer. If you are on Prednisone, chances are pretty good that you are completely covered and don’t have to worry about it. However, if you are on Hydrocortisone, that is a whole new story. You have to take Hydrocortisone multiple times per day to mimic a body’s natural replication. So, how is this done? First of all, knowing your baseline is a good start. Also knowing how fast you metabolize the Hydcrortisone. Some need it every 4 hours, while other people can get away with going 6 hours. The best way to mimic the body’s “normal” is to do circadian rhythm dosing. That will assure 24 hour coverage and will give you a higher quality of life.
  3. Make sure your labs are up to date. When you first were diagnosed, they performed an 8am blood cortisol test. They hopefully also performed an ACTH test to show whether you are PAI or SAI. If not, you’ll want to find out. Other tests needed are a Comprehensive metabolic Panel, CBC Count, Thyroid-Stimulating Hormone or TSH, Autoaintibody Testing, Prolactin Testing. Imaging studies are also needed. You’ll want a chest radiograph done to show current evidence of TB. You’ll also want an abdominal CT scan. And an MRI done to show what is going on with your pituitary function. Another test I would recommend is a DNA test. You can order these through My Heritage or 23 And Me. This will show you what other health issues you may have.
  4. Stress Dose when needed. In a normal body, the body will create MORE cortisol when needed. When our bodies are under stress, whether it is good or bad, it doesn’t even know the difference, it lowers it. How do you handle this? You add more! How much will totally depend on how you are feeling. Some people need an extra 2.5mg, others need more like 20mg. It just really depends on the situation. Are you sick, do you have an infection, or are you just stressed out? Knowing your low cortisol symptoms are VITAL.
  5. INJECT!!!! NOW! When in doubt, ALWAYS inject 100mg of Soluctortef. If you even have to second guess this, it’s time to inject. Do you need follow-up hospital care afterwards? Not necessarily. It depends on the situation. If you can keep fluids down, you’re probably ok. However, if you have a stomach bug and are puking and have diarrhea, the best place to be is at the hospital being monitored and replenished with IV fluids.

Now, let’s talk about what to do IF you are IN an Adrenal Crisis….

First of all, breathe. You’re going to be ok! What I like to do is to ask myself “What do I need RIGHT NOW to take care of myself?” And I just keep asking myself that over and over again until I’m in the clear. Questions you may ask yourself are….

  1. How am I feeling? What are my symptoms? Do I need to stress dose or do I need to inject??
  2. How are my fluids? How about my supplements?
  3.  I need to call 911 or can I handle this myself? Is someone home that can help me through this?
  4. If you need to dial 911, make sure they know you have AI, are steroid dependent and need 100mg of Soluctortef when paramedics arrive.
  5. What if you’re not home? You need to start carrying a “to go bag.” The bag should include things such as your medications, your emergency injection, fluids, and lots of snacks, both salty and sugary. Also, you’ll want to include a letter to the ER from your doctor with correct protocol along with emergency contact info and a list of all medications and supplements taken.

Disclaimer: This is not intended to replace medical advice given from your doctor. Please consult with them prior to adjusting any and all medications.

“You DIED…three times and LIVED to tell your story!”

February 23, 2017 will be a date that will forever be engraved into my life and the lives of the people closest to me. It’s the night that I died…three times…and came back to life to tell my story.

It was a cold, February night. I had been under a tremendous amount of stress. My ten year old had suffered a major concussion at school a couple of weeks prior. That led to several doctor’s appointments, a CT scan, a trip to the children’s hospital when his symptoms got worse, communicating with his teacher to get homework that he could safely do while he was at home recuperating, and a group of unneccessary text messages between his father and me, arguing about his treatment plan and the plan for our son to return to sports. Living with Adrenal Insufficiency has taught me that when I’m under any emotional or physical stress, I need to take extra meds in order to cope like someone who has healthy, functioning adrenal glands. However, when my cortisol levels drop to a certain level, I can’t think clearly and I don’t realize when I need to take the extra life saving steroids. My husband recognized it, but it was too late.

There is a block of time that I absolutely don’t remember. That block of time started right after I told my husband “I don’t feel right…” I was standing in the kitchen and I had just read a text message that apparently dropped my cortisol levels to a dangerously low level. My husband took one look at me, and told me to come lay down and he would get me some meds. To be honest, the meds I truly needed was my Solucortef Emergency Injection. However, it was sitting at the hospital pharmacy….all because…one, I didn’t think I truly had “that” bad of a case of Addison’s…I saw other people posting in our groups and they were constantly in crisis and having to inject, but that just wasn’t me. Also, it was $52 to pick it up and we simply could not afford it at the time. Please read that again. I could not afford my life saving injection that literally could have and would have SAVED MY LIFE!!!!! I started to walk towards him, and I collapsed in the middle of our dining room, not breathing and unresponsive. My husband told my ten year old to call 911 and he immediately started CPR.

It took emergency responders 14 minutes to arrive to our house. They attempted to revive me with no avail. I was in cardiac arrest. They couldn’t locate a good IV spot, so they chose to perform an emergency procedure known as an IO (Intraoasseous Infusion) where they drill into a person’s shin bone and are able to get an IV started. The problem is, the EMT who performed the IO drill led too far into my shin, so all of the medication that they pumped into my system went straight into the tissue of my leg. Since I was not responding like I should with the medication, they kept giving me more and more, not realizing the harm it was causing. A brand new EMT looked at my leg and asked if my leg was supposed to look the way it did. I apparently had compartment syndrome and my leg had ballooned up. Things suddenly took a turn for the worse.

My husband was on his way to the hospital, when all of a sudden I went into cardiac arrest again and my “spirit” visited him in his car. According to him, I told him that I love him and I was saying goodbye. Being the strong-willed person that he is, he told me to get back into the ambulance and start breathing. Although our wedding vows did not include “thow shall obey,” I left his car and started breathing in the ambulance. When he arrived at the hospital, he was met at the door by the hospital chaplain, who urged him to call my parents, as the doctors did not expect me to live. My husband was notified that I would require emergency surgery and they needed him to sign a release for them to operate. Knowing what surgery would do to my body, he insisted that the medical team give me 100mg of Solucortef prior to the surgery. It then became a battle of who would give in first. The person trying to get him to sign the release told my husband that I would die if they couldn’t operate qickly, and he told them that I would die if I did not have the emergency steroids on board prior to the surgery. In the end, my husband won the battle and after I was given the Solucortef, I was rushed into surgery.

love from all of us
Continue reading ““You DIED…three times and LIVED to tell your story!””

My FIRST Crisis Since Being On The Pump

I’ve been on the Adrenal Pump ever since my last hospital stay in June of 2018. It has been nothing short of a miracle in my life. Several events led up to me wanting a better quality of life. As I sat in my hospital bed, I lost a dear friend of mine, Kristy, to Adrenal Insufficiency. I gave my word to God to that I would not allow that to happen to another friend of mine. However, I KNEW that I had to get myself healthy again. I began my search and discovered the Adrenal Pump. To say that it has given me my life back would be a complete understatement. I’m living my life again!

Is it a “Plug and Go” and “Set it and Forget it” solution? No. It took a major learning curve, and I have to manage it every single day, in order to make it work for me. Is it worth it? Oh yes! Do I still have bad days? Yes, I do. Yesterday is PROOF that I still have Adrenal Insufficiency and it hit me like a TORNADO. I had my FIRST Adrenal Crisis since being on the pump. I learned several lessons yesterday.

The first lesson being that you can’t pour from an empty cup. You have to take care of yourself first before you can possibly take care of anyone else. Let me say that one again. You HAVE to take care of yourself FIRST before you can possibly take care of ANYONE else.

I have a very set routine each morning. I get up, I check my pump, take my supplements, take my vitals, make coffee, and then I get to relax and pray, put on some music and I get to work. And then I get to play and enjoy my day and “live.” Yesterday felt no different, except that I have been so busy lately enjoying life and working that I neglected to take care of the one person who really matters…ME. I completely broke my routine, and the sad thing is…I did not recognize it. I don’t want this to happen again and I certainly do not want it to happen to anyone else I care about. So…are you ready to hear about my day? Ok, let’s go.

First of all, the night before, I was on Facebook and I felt compelled to write an inspirational post to my online support groups. I wanted to get this done before midnight so that others who were struggling could see it right then and there or wake up to it. I accomplished my goal. I then decided to go to bed. I normally wake up everyday between 3am-5am, and average about 4-6 hours a sleep, depending on the night. However, my mind was racing and I just couldn’t go to sleep. I have a good friend in Tennessee, Ruth, who was awake and we were texting. She asked why I was still awake and I told her I just couldn’t sleep. So, she said “Hey, just get up and we’ll talk.” She and I were both friends with my friend who died and it brought us closer than ever. We talked about Kristy, about what had been going on in our lives and how much we missed Kristy. She was having a rough morning and I had had a few ups and downs this week, so we were comforting each other. She is also on the Adrenal Pump and we were talking about how we could help other people with Adrenal Insufficiency to live a better life, with our without the pump. But in the meantime, I completely broke my routine. Here’s how that played out…

  1. No sleep. Adrenals are a funny thing. They like sleep. It gives them time to heal and reset. I normally take Melatonin to sleep, but I had not taken mine. Mistake number one.
  2. I checked my pump. Ok, well that’s a check mark for good behavior. Go Jen!
  3. I did not check my vitals. Had I done that, I would have known that something was wrong before I even started my day. I figured I would “get to it.” I didn’t.
  4. I did not take my supplements. Again, I figured I would “get to it.” I didn’t.
  5. I made coffee and I drank a lot of it. I had a lot to do yesterday and I wanted to be refreshed. I didn’t drink my morning Vitamin C like I normally do, which helps give me a boost of energy and also helps protect my immune system. I decided I just needed MORE coffee. I had errands to run before I could work. My website had been down for 2 days and I had to get that figured out so that I could play some more. My “to do list” was long and being a Type A personality, I wanted to get everything done as soon as I could. So, I decided to go get more coffee and run my errands. I’ve been dealing with some lower back pain, which is a sign of low cortisol for me, but I bought a TENS unit to help alleviate pain and I normally wear it when I drive or work or just when I need it to help with pain. So, being the already “cyborg” I am, I hooked it up and left. First stop, Dutch Bros….a large 911 Freeze…which equates to 9 shots of espresso! Yes, not one of my best ideas. However, when Kristy was alive, I would treat myself to one and since I was missing her, I figured I would go buy one to honor her friendship, and continued with my errands.
  6. I came home and hopped onto my computer. I had to figure out what was wrong with my website and why it had been down. I contacted Go Daddy tech support. I was greeted by a very nice gentleman who explained that it was not a Go Daddy issue after all. It was actually WordPress. I was frustrated but he was so helpful. He e-mailed me the information I needed in order to contact WordPress to get me up and running. I asked him to stay on the line with me until I got the e-mail. He was gracious enough to do that. We started chatting and he told me he was a soldier and was kind of struggling. I thanked him for his service to our country and I also told him about someone that had helped me through my PTSD and told him I would give him her information, as she had helped me tremendously. He was so appreciative. After our call, I became very emotional. That was unlike me. Yet, it’s one of my low cortisol symptoms, and I completely dismissed it. I had so much to do..I had no time for crying, yet I could not stop. I cried a lot throughout the day. In bad and good ways. I should have “bolused” or “updosed” but I didn’t. Another huge mistake. I also should have set the rates on my pump to a higher amount to compensate for the day because I was clearly struggling, but I was having major brain fog (another low cortisol symptom), and instead, I decided to go DOWN in my rates. Huge huge huge mistake! My husband woke up and we were talking about my day so far. We have developed a good system and we have a good plan in place to keep me healthy. Communication is key between us and I had not done a good job and communicating my very poor decisions. We also have a code word for when I’m in crisis. I typically tell him “I feel OFF!” And he helps to get me through it, typically with a shot of 100mg of Solu-Cortef. He was working on our boat in the garage and I was in the house when the “tornado” hit me. My phone had died because I had been on it all day, so I couldn’t call him and I was going into crisis fast!!!!
  7. WARNING….Crisis approaching…. I thought to myself…”Self care, Jen…THINK! What do I need to do NOW???? You are NOT going to die! You have NOT come this far to DIE!” I realized that I had not taken any sodium that day. The weather was cooler and to be honest, I just had forgotten. I knew that my sodium chloride tablets were outback and I didn’t have the strength to walk out to get them. I was close to the pantry so I took out a jar of bone broth. I have a spoon next to it and I shoveled an entire spoonful of it in my mouth. That helped instantly, but it was not what all I needed. I “bolused” or “updosed” on my pump as much as I possibly could until it wouldn’t allow me to give myself any more. I prayed for guidance. “GOD….please tell me what to do. Please guide me to what I need RIGHT NOW!” I needed my emergency injection!!! I didn’t hesitate. I sat down at the table and I injected myself with 100mg of Solu-Cortef. It works fast and it saved my life. I still felt “Off” and I didn’t have the energy yet to go tell Mike. So I decided to turn on some christian music and lay down for a bit.
  8. Music and sleep is what I needed at that moment. I fell asleep quickly. Mike apparently had come in to check on me and was surprisingly happy to see me sleeping so he let me sleep.
  9. I woke up feeling better. Not great. But good enough to go out to the garage and talk to Mike. I told him what had happened. I completely confessed to all of my bad decisions. I cried. He was very supportive. But the day was not over and I continued to make poor choices.
  10. I had not been hungry, so I did not eat. Still no vitals. Still no supplements on board. Had I taken my vitals, I would have known that my blood pressure was sky high. When I go into crisis, my blood pressure goes high, which is not always typical in Adrenal Insufficiency. Had I taken my supplements, I would have had my electrolytes on board and it probably would have prevented what would come next.
  11. I started having lower back pain again and just felt “OFF” again. I had been texting my Dad and he asked if I was truly ok because my texts were not making sense. I thought I was. I was clearly not. I decided to go relax in a hot bath. Mike asked if I was ok, and I told him yes. I thought I just needed a “time out.” Another one of my poor choices. Soaking in a hot bath can drain cortisol and it did. I texted my friend, Ruth, and told her I could not think straight. My heart was racing, I had a headache, lower back pain despite the hot water, but as soon as she heard that I could not think for myself, she told me I had two choices…”bolus” or “inject” AGAIN. So, I bolused as I shakingly crawled out of the bathtub and got dressed so that I could go get another emergency injection, which was downstairs. I should have called Mike, but again, I was not thinking clearly.
  12. I drew up another 100mg of Solu-Cortef and I injected. I sat there for a few minutes and then decided to go get Mike. I was clearly making all the wrong decisions today and I needed his support and guidance, and I just needed him to wrap his arms around me.
  13.  We came in the house and talked and he wrapped his arms around me to see what I needed. I needed food, so he made me some. I needed potassium and magnesium, so he brought me my supplements. I also needed more sodium so he brought my bone broth to me as well. And then just rubbed my back until I felt better.
  14. I FINALLY felt better. I was able to avoid the hospital. Barely. I went to bed and was able to fall asleep and LIVE to see another day.
  15. What did I learn? You can’t pour from an empty cup. Take care of YOURSELF first. We have one life to live and today is a new day! Oh….and in case your’e wondering, I did follow my daily routine when I got up this morning and I feel really well. Today, we are going to take out the boat and I’m going to press “Reset” and enjoy my glorious “New Normal!”

If you’d like more information on what I do to take care of myself, message me. I would be happy to pass on what helps me. Also, here are some things that I use daily that helps me LIVE. Check them out, talk to your doctor before starting any new supplements or treatments. But friends, if you do not have an ample supply of emergency injections on hand at all times, don’t wait. Go get them today!!! It WILL save your life at some point! I’m living proof!!!

For Vitals:

For Supplements:

For Extra Support:

So, if you’re anything like me, saving money is essential. I do all of my grocery shopping online, and I found a Walmart coupon code good for $30 off of purchases. Just click on the link to get the code.

Also, an App you can download to help save on out of pocket prescription meds is GoodRx. It has saved me quite a bit of money.

Giving Up Is NOT An Option!

Happy Sunday my friends. I’ve had a very busy week….with ups and downs. It’s hard to believe that just over a month ago, I was housebound and had been for a very long time! If I drove my son to school or drove to the pharmacy, I considered that a huge win for me.

This week, I have left the house everyday. It felt amazing!! I felt like my normal self again, before I got sick. I ran a ton of errands, I went to a doctor appointment, I drove into Portland and picked up my brother and took him to an appointment he had downtown, I drove to Clackamas to pick up my daughter from her Dad’s house, I drove to Tigard to take my daughter to get pampered, I cooked dinner and did some housecleaning, I just kept pushing myself to do more and more.

I also had quite a bit of stress come up, which I proactively handled. I was really proud of myself. I’ve been battling a really dangerous infection, which normally would have landed me straight into the hospital. The stress I’ve been under would likely have landed me in the hospital as well. Pushing myself with as much as I did would have landed me in the hospital.

Being on the adrenal pump has been an incredibly huge blessing in my life. It has literally given me my life back. Has it been all roses? Unfortunately not. It has come with a whole new set of rules and responsibilities for me. It’s been even more of a learning curve in the past month than in the 2 years of being diagnosed with Adrenal Insufficiency. I literally learn something new about my body every single day.

Here’s where it gets tricky. My body still has AI. My adrenal glands still don’t work like a healthy person’s adrenal glands. In a healthy body, the adrenal glands know when to produce more cortisol automatically. I don’t have that luxury and I never will. I have to constantly monitor how I’m feeling and what symptoms I’m having to know when I need extra cortisol. And sometimes, when my cortisol is too low, my brain goes into such a deep fog that I have to rely on other people to tell me that there’s something not right with me and that I’m probably low.

As great as I felt this week, I also kept sinking into low cortisol episodes. My brain said go go go, but my body was clearly not on the same page. One morning, I was having an adrenal crisis and I had to wake up my husband to give me an emergency injection. Last night, I was so low in cortisol that I blacked out and all I can remember is that my husband told me that I needed more cortisol and lots of it. I had been on a phone call with a friend who was trying to teach me something about my medications and the pump, and I couldn’t think clearly enough to actually do as she was suggesting. I sent out a couple of text messages that made absolutely no sense, as if I was completely drunk texting, which was not the case. This morning, I had really bad nausea and lower back pain. Those are both symptoms for me of low cortisol, but I didn’t recognize it until my husband pointed it out to me and told me to take extra cortisol. Within minutes, my nausea and pain were gone.

We decided that today is going to be a total day of rest for me. We also came up with a plan to help me recognize when I’m low in cortisol and exactly what I need to do about it, just in case no one is around, and also because this is my body and I am 100% responsible for taking the best care of myself.

I’ve heard a lot of people with AI say they just want to give up. That saddens me. I’ve made it my mission to focus on my health to be the best wife, mother, and friend. When my health is good, I can and do help many other people who are having struggles. It feels as though God is working through me. God has sent angels into my life to help me get to where I am today and I’m here to tell you that giving up is not an option!

5 Steps To Being A Bad Ass Advocate

Until 2008, when I first got sick, I had no idea how important it was to become my own advocate for my health. And not just any advocate…I had to learn how to be Bad Ass. Normally when people get sick, doctors are able to diagnose you and help guide you back to good health. That was definitely not the case for me. I spent the next 8 years fighting for answers. Even after I was diagnosed with Adrenal Insufficiency, I had to continue to be a strong advocate. In fact, I had to turn the knob up on just how Bad Ass I needed to be. After all, this is my life and if I truly want to live and not just survive, I had to take charge and become the CEO of my health. So, how does one go about being a Bad Ass Advocate you may ask?

  1. You must decide that your health is top priority for you. This one took me a while to “get.” I had no idea in 2008 that I was about to be chronically ill for the rest of my life. One day I felt perfectly healthy, and in a blink of an eye, I got sick and stayed sick. I thought I had a stomach bug, but after a few trips to the ER, I knew I had to figure out what was going on, since they only treated me for my symptoms and sent me on my merry way. I went to go see my doctor, she ran some tests, but ultimately just ended up putting me on large doses of Zofran and pain pills as a treatment plan. She never even went over the tests with me. I got the results in the mail, but wasn’t sure what they all meant. I wasn’t thrilled with the treatment plan, so I decided that if I was going to get better, I had to do whatever it took to get some answers. After all, I had three kids that depended on me.
  2. Get ready to do research on your own. Had I just followed my doctor’s treatment plan, I most likely would be dead right now. I started researching what my test results meant and what could possibly be wrong with my body. I took this information to my doctor and insisted on further testing. That started my journey of seeing specialist after specialist and having more tests run on me than a lab rat. I became very knowledgeable and I wasn’t afraid to ask for certain tests to be performed. After I was diagnosed in 2016, that’s when I ended up doing the most research and to this day, I still do ongoing research. This is my life and my body and just relying on doctors for answers and treatment plans proved to not be in my best interest. When I see a doctor, I’m always prepared with a list of questions to ask. It doesn’t matter if it’s my PCP, my Endocrinologist, an ER doctor or an admitting doctor. Also, joining support groups online can be extremely beneficial. Not only have you done your own research, but now you have other people to talk to that have done their own research that can help you as well.
  3. Find doctors who are on the same page as you are in regards to your health. Think all doctors are the same? Think again! I’ve been through my share of doctors over the years. When I realized that I knew more about Adrenal Insufficiency than my Endocrinologist, it was time for me to find a new one. I started asking for referrals and now have one that works with me and respects my knowledge. As far as a PCP, my last one literally would throw her hands up in the air whenever I brought up Adrenal Insufficiency and say “I’m not touching that.” After being placed on medications that interfered with my Adrenal Insufficiency, and her lack of knowledge, compassion and willingness to do any research to help with my health, it was time for her to go. I then decided that I was going to interview doctors prior to becoming their patient. Luckily, I found a wonderful PCP who has done extensive research and continues to do research so that he can properly treat my illness. I have also fired doctors in the hospital because we couldn’t get on the same page. Yes, you can fire doctors! You don’t want to leave your life in the hands of a doctor that might do treatments that will send you to the ICU or the morgue.
  4. Question every medication and every test being performed. If you’ve been to the ER, you know that typically, you’re being poked with a needle before you even see a doctor. And sometimes, you’re even getting medications that they ordered prior to an examination. It can be challenging when you’re not feeling well to ask the questions, but this is crucial. If you’ve done your research, you know which tests should be run. You should also know which medications work best to treat you and which ones to avoid. Trust me, this did not fully compute with me until I learned the hard way. Not only in the ER, but also the hospital, with my PCP and my Endocrinologist. There’s a reason why they call it practicing medicine. Most doctors won’t take the time to know your history, and they will simply run tests and give medications that they’ve given to other people in the past, assuming that this is in your best interest. I’ve had way too many bad reactions or unpleasant side effects from medications that I wasn’t even sure of the reason why I was on the medication in the first place. My list of allergies not only includes what I’m allergic to, but also lists medications where I’ve had a negative reaction to. I’ve also had so many CT scans and MRIs that I am in danger of getting cancer. You have to weigh out your options, but first, you have to be bold enough to question why a test is being performed or why a medication is either being prescribed to you or going into your IV site. Is the test necessary? What are the pros and cons of the medications and do I really need to be on the medication? You’ve seen the commercials where they glorify a medication like it’s the greatest thing in the world, but then list all of the harsh side effects. Unlike doctors, those commercials are regulated to list side effects and potential problems that may arise while taking the medication. So, make sure that every doctor that is giving you medications or running tests on you is a walking commercial, so to speak.
  5. Take a proactive approach to your health instead of a reactive approach. God only gives you one body in this lifetime. Don’t sit back and assume that the treatments you are getting are the best for your health. Furthermore, don’t wait on the sidelines to start feeling better. I had issues every month when I got my period. More times than not, I ended up in the ER because of the issues. I decided to have a hysterectomy, after doing my research of course, and it turned out to be a huge blessing in disguise. I had some major issues going on inside of me that only could be diagnosed with the hysterectomy. Recently, I got on the adrenal pump. Prior to that, I spent two years taking oral steroids every 4 hours and had to play the guessing game of when I needed more or if I needed to take them earlier than the 4 hours. I was basically reacting to what my body was trying to tell me, and often times, my cortisol was so low that I couldn’t think straight in order to know when I needed extra steroids. During my latest hospitalization, I decided enough was enough. I no longer wanted to continue the path that I was on. I no longer wanted to refer to PeaceHealth Hospital as my second home. So I reached out to people that I knew that were on the pump and devised a plan to get on it as soon as I was released from the hospital. The pump has drastically changed my life so far. I am now getting a constant amount of cortisol in my body, comparable to a person without Adrenal Insufficiency. I’m no longer waiting to feel better. I feel amazing and it has helped me to make plans and goals for my future. But here’s the key….I didn’t wait for my Endocrinologist to suggest it for me. I went to her with the idea. Her initial response was “But it’s not FDA approved yet in the U.S.” I could have just accepted that answer and waited for the FDA. Instead, I was prepared for her to say that and I had a plan for convincing her to support me, which she did. Now kids, “THIS is my new normal” and I couldn’t have done it had I not mastered being a Bad Ass Advocate for myself!

 

10 Things I Wish My Endocrinologist Would Have Told Me….

I was diagnosed with Adrenal Insufficiency on March 23, 2016. When I met with my first Endocrinologist, we’ll refer to her as Dr. W, I knew nothing about Adrenal Insufficiency so I took a notebook with me, prepared to take lots of notes. In a nutshell, this is what Dr. W told me…”Take Hydrocortisone twice a day, I’ll see you every 6 months for labs, and you’re going to be able to live a normal life again!” The “2016 me” was beyond ecstatic, after suffering with symptoms for over 8 years. The “2018 me” rolls my eyes and wonders how this doctor ever made it through medical school, let alone becoming a “specialist” in medical care.

If you’re anything like me, I love knowledge! As soon as I was diagnosed, I started spending hours upon hours researching my new diagnosis. I found support groups on Facebook, with people who were members that each had their own Endocrinologists and ranged from being newly diagnosed to having Adrenal Insufficiency for decades. I quickly realized how much Dr. W did not tell me, and after having a couple more appointments with her, I realized that I knew more about my illness than she did. As you can probably guess, I fired Dr. W and found Dr. C, who is very knowledgeable and has an appreciation of the fact that I probably know just as much about Adrenal Insufficiency as she does.

Over the past couple of years, there have been many newly diagnosed people who have joined the support groups on Facebook and have posted questions, desperate for answers, just like I had been at one point. Over time, I have become very frustrated because of the overwhelming number of newly diagnosed people who’s doctors were basically telling them the same thing Dr. W told me, and nothing more. So, I figured I would compile the Top 10 things I wish my doctor would have told me when I was newly diagnosed. I’m not a medical professional, and before you change anything in the care of your Adrenal Insufficiency, you should consult with your doctor.

1.“Taking Hydrocortisone 2 times per day will not be enough!” Hydrocortisone stays in a body anywhere from 4-6 hours at a time. When I took my Hydrocortisone twice a day, I would feel great for about 2 hours each time I took them, but felt horrible the rest of the day. Little did I know, after the Hydrocortisone metabolized out of my body, I had no cortisol in my system, which is why I felt so horrible and continued getting sick. A normal body creates cortisol 24 hours a day, so it would make sense to take the medication that is supposed to replace the lost cortisol, as closely as possible to how a normal body would create it. In order for that to happen, a person needs to take Hydrocortisone between 4 to 6 times per day, depending on how quickly their body metabolizes the Hydrocortisone.

2. “How much and when to take Hydrocortisone matters!”In order to mimic a normal body’s output of cortisol, you have to take Hydrocortisone in a way that will be as close to how the body produces cortisol as possible. How do you do that? You have to follow the Circadian Rhythm dosing schedule. For me, since I metabolize Hydrocortisone every 4 hours, that means I need to take it 6 times a day in order to have 24 hour coverage. Is it a pain in the butt? It sure is….I have to set alarms and even wake up in the middle of the night to take my meds. Is it worth it? It absolutely is! Before I started following the Circadian Rhythm dosing schedule, I just guessed at how much I needed to take every time. I knew that normal bodies had higher amounts of cortisol in the morning and very little at bedtime, so I just took the highest amount when I woke up and tapered down during the day, and took my last dose at bedtime. This schedule not only had me feeling awful when I first woke up and having highs and lows throughout the day, but I was also over replacing my cortisol at times during the day and I had no cortisol in my body at night and early in the morning, when a normal body would have cortisol.

3. “You will have to stress dose!”Do what? Dr. W never told me that there would be times that I would need to take extra Hydrocortisone. In a normal body, anytime the body needs extra cortisol, the adrenal glands produce more instantly. This is not the case for people with Adrenal Insufficiency. At times when we need more, our bodies metabolize the Hydrocortisone faster and are left searching for more. How much extra to take and when to take it really depends on what is currently going on inside of your body. If you are having additional emotional stress, even if it’s good stress, like attending a wedding, you’ll have to take a small amount extra. If you have a stomach bug or an infection, you’ll have to double the amount that you take during the day. And if you’re puking or having surgery or get into an accident, you’ll need 100mg of Solucortef, which is the emergency Hydrocortisone. It’s very important to know what your symptoms of low coritisol are and to listen to your body.

4. “You will need to carry an Emergency Injection with you at all times!”Not only did Dr. W not tell me about Emergency Injections, when I asked her for a prescription for one, she told me I didn’t need it. Make no mistake, not having an Emergency Injection on you at all times can be deadly! I didn’t realize just how important having one at all times was until I had an Adrenal Crisis, wasn’t breathing, and ended up “dying” three times in one night. Where was my Emergency Injection? Sitting at the pharmacy because I hadn’t gotten around to picking it up. I have had a few times where I’ve gone into an Adrenal Crisis and wasn’t breathing, and after my husband injected me with the Emergency Injection, I started breathing within a minute or two. Dr. C makes sure that I can have several on hand at a time, with plenty of refills. She also advised me to inject as soon as I cannot keep my oral meds down if I am puking.

5. “You will gain weight!”Say it isn’t so! I have always been a very thin person. I could eat whatever I wanted and never had a weight problem. At my second appointment with Dr. W, I was horrified when I had gained 15 pounds. Dr. W told me not to worry about it because it was just the Hydrocortisone getting my body metabolized, and that I shouldn’t gain anymore. Now, I look back at those 15 pounds and how horrified I was, and only wish that I could go back to that weight. I kept gaining weight and had no idea why. I rarely eat sugary foods and I hadn’t changed my eating habits to support the weight gain. I saw many posts on the support groups of people who had gained weight, so I thought it was just something that happened and couldn’t be controlled. Finally, one of the Admins of one of the support groups on Facebook wrote a post about why people gain weight on steroids. Basically, she said that carbs instantly turn into insulin, so our bodies have a huge rush of insulin every time we eat carbs, and that turns into fat. Seriously? I love carbs! Give me bread and pasta and I’m a happy girl. Well, now I’m a chubby, happy girl. After doing some research, I found that following the Ketogenic way of eating was one of the only options for losing weight while on steroids. When I follow that way of eating, I do lose weight, but when I give into my carb cravings, I start gaining again. So, carbs and I had to break up.

6.“You’ll need to take a Calcium supplement and other supplements!”I have a good friend of mine that is a doctor. After I was diagnosed, he asked me how much Calcium and Vitamin D my doctor had me on. “None” was not the answer he expected. He told me the importance of taking Calcium and Vitamin D every day, because steroids rob your bones of Calcium and it can lead to Osteoporosis at a very young age. Also, because the Adrenal Glands control so many of your hormones, it’s important to have your other hormones tested to see if you need to be on any other supplements. For me, I have to take a DHEA supplement every day. I didn’t even know what DHEA was until recently. I was feeling sluggish and had to take naps during the day. Dr. C tested my DHEA levels and they were low. Now, I take a DHEA supplement every day and my energy level has improved tremendously. I also take a daily Potassium supplement, along with Magnesium and with the heat, and being a “salt waster,” I also take multiple Sodium Chloride tablets throughout the day. If you have Amazon, I’ve listed some of the supplements that I’ve personally tried and take on a daily basis. Of course, before you start taking any supplements, please consult with your Personal Care Physician or your Endo. Most likely, they’ll want to run some labs first to see how much you’ll need based on your own personal situation.

7. “The days of going to the hospital are not over!”Not only are the days of going to the hospital not over, now that you have been diagnosed with Adrenal Insufficiency, you are going to have to be very knowledgeable and become a strong advocate for yourself for when you do have to go to the hospital. I thought my hospital days were over…I was wrong. I also thought that since I finally had a diagnosis, doctors would treat me with the correct treatment plan and would finally stop treating me like my symptoms were in my head…again, I was wrong. Unfortunately, I’ve been to the hospital many times since being diagnosed. I have found that there are two types of doctors. The doctors who took an 8 hour class in med school that think they know “everything” about Adrenal Insufficiency. And the doctors who admit that they don’t know as much as I do about it and ask me how to appropriately treat me. You will quickly figure out which kind of doctor you’re dealing with, and you need to be prepared to deal with the first type. I have “fired” doctors in the hospital because they refused to listen to me and have actually caused me to go into an Adrenal Crisis, in the hospital, under their care.

8. “Be prepared for an Adrenal Crisis!”Some people with Adrenal Insufficiency can go years without having an Adrenal Crisis. Other people have several a year. Knowing the symptoms of low cortisol can be detrimental to keeping you out of an Adrenal Crisis. Knowing the signs of an Adrenal Crisis will save your life! Always make sure you have your Hydrocortisone and your Emergency Injection with you at all times. Last summer, I was camping and decided to go out on our boat without any meds. I started having low cortisol symptoms, so my husband drove the boat to shore so that I could walk back to our campsite and take my Hydrocortisone. However, I got lost while looking for the campsite. By the time I finally found it, I was already in an Adrenal Crisis, and ended up spending the next two weeks in the hospital because of the severity of the Crisis. Also, making sure you always wear a Medical Alert ID bracelet is essential and making sure your loved ones know what to do when you do go into a Crisis is crucial.

9.“You are not alone!”When I first got diagnosed with Adrenal Insufficiency, I felt very scared and alone. I had no idea that there were thousands of people, from all over the world, just like me, who were living with this disease. Once I found the online support groups on Facebook, I felt a sense of peace. Suddenly, I could find someone to talk to or ask for advice 24 hours a day. Some of my best friends now are people I’ve met online in the support groups. Although I love my friends who do not have Adrenal Insufficiency, they don’t completely understand it, so it’s nice to be able to talk to people who are living with it every day like I am.

10. “This is your new normal!”Based on what Dr. W told me, I expected my life to go back to the way I felt prior to diagnosis and prior to having symptoms. I’m a little hard headed, so I waited over a year before I finally came to the realization that this life was my new normal. I will always have Adrenal Insufficiency, I will always have to take replacement steroids to live, I will always have to be prepared for good days and bad days. The sooner you can accept this, the happier you’ll be. Just remember, you’re stronger than you think you are! You are an Adrenal Insufficiency Warrior!

 

LIST OF MY DAILY SUPPLEMENTS…. Click links to read more about them… Again…before taking ANY supplements, consult with your doctor first.

 

Pure Encapsulations – UltraMag Magnesium – Enhanced Absorption Magnesium for Cardiometabolic, Neurocognitive and Musculoskeletal Health* – 120 Capsules

Pure Encapsulations – Potassium (Citrate) – Essential Mineral for Vascular Function and Overall Health* – 180

Pure Encapsulations – DHEA (Dehydroepiandrosterone) 25 mg

Thermotabs Each Buffered Salt Tab, 3 Count

“Blink Once For Yes, Twice For No…The Finale…”

When my physical therapist let go of my foot, I was able to hold my foot up. He massaged my leg and then asked me to raise up my leg…and I was able to do it! I was ecstatic! Finally, I was getting movement! I asked him if I could try standing up and at that point, he decided that he had to have a heart to heart talk with me about how I would need to learn how to walk again and how much of an uphill battle I was still facing, and told me that I needed to take things slow. I laughed at him and said “You don’t know me very well! When I put my mind to something, I won’t stop until I’ve accomplished it! I WILL be walking out of this hospital THIS week! Just watch!” Since I was able to now lift my legs a little bit, I figured it would be a cute idea to make a video of me kicking Mike in the leg to show everyone what I could do. This was so huge for me! I couldn’t wait for my next PT session. My Dad came to visit me and we were talking about his birthday coming up. I asked him what he wanted for his birthday, and he said “I want you to walk again!” Since his birthday was on Friday, I knew that I was going to have a lot of work to do, but I was determined to make it happen! That night, Mike took me into the bathroom and I wrapped my arms around his neck. He put his arms around me for support….and then I stood up! I couldn’t tell PT about this new accomplishment because they would take away Mike’s “privileges” to help me transfer from my wheelchair to the toilet or the bed. However, just knowing that I could do it was enough to make my whole day!

Tuesday morning came and I was determined to make more progress. Unfortunately, all of my physical therapists wanted to take things at turtle speed and I was ready to run marathons! I knew that I would have to use psychology to trick them into allowing me to push. With every “No” that I got, I became even more determined. I talked my physical therapist into allowing me to try to stand. She took me over to a set of bars that I could pull myself up with and she had my wheelchair behind me and she was in front of me to support me, in case I fell. I stood up and was able to shift my weight back and forth on each foot. I asked her if I could try walking. “Noooooo…..that is way too soon and no one is behind you to catch you if you fall!” I reminded her that I did have my wheelchair behind me and I had her to catch me, so I said “How about JUST one step?” She sighed, knowing that I was not planning on giving up until she agreed, so she said “Ok, ONE step!”

I was nervous. I knew I could stand, but what if my brain wouldn’t let me walk? I closed my eyes, said a quick prayer…and then took a step! “You did it! Open your eyes!” I begged her to let me take another step so that I could see it. She let me. I asked if I could use a walker to take a few more steps. After all, I would have the walker to support me and she could be behind me if my legs gave out. She got the walker and held onto the support belt that was wrapped around me. I pulled myself up from my wheelchair and I took a few steps. I can’t even put into words how excited I was! Mike hadn’t arrived at the hospital yet and I wanted to call him to tell him, but figured that him seeing it in person would make his day. So, I kept walking around the “gym,” having to take breaks, as my legs were still really weak. Once Mike arrived, I showed him that I could walk with the walker. He was as excited as I was! My physical therapist wanted me to rest, but I wanted to push harder. With Mike being there, I would now have two support people who could catch me if my legs gave out, so I talked her into letting me walk around the rehab floor.

I walked around as much as my legs and my aching back would let me. One thing that I didn’t anticipate was how much pain that I would be in once I was up on my feet. I jokingly said that it felt as if I was 20 months pregnant, but the reality was that my back was in intense pain, which drove down my cortisol levels quickly. I was told that this was a side effect of the paralysis. I also had shooting nerve pain that went from the bottom of my leg all the way up and across my lower back. Keeping the pain under control had already been tough, but once I was up on my feet, the pain was even stronger. I knew I had to be careful because even though I wanted to keep pushing, I knew that I was risking lowering my cortisol levels to an unsafe level.

The nice thing about the evening meds was that I was able to ask for more hydrocortisone when I felt like I needed them. I decided to take extra hydrocortisone because of the pain, but I also had a plan. The night shift turned out to be very busy for the nurses and CNA’s. I knew exactly when I would be checked on, and I made sure that I had enough broth and water to keep my electrolytes up. I waited until I got my pain meds and then I decided to use the walker to walk over to the door to close it. I then went back to my bed, but I didn’t sit on it. Instead, I moved my walker over to see if I could take some steps without it.

I walked over to a chair in my room and then back to my bed. Success!!! I then walked from my bed to the bathroom and then back to my bed. I was doing it! I was walking!! I had to take a lot of breaks because it was causing pain, but I figured that I had to take the opportunity to do as much walking as possible. Every time I was checked on for more meds or to take my vitals, I spent time relaxing in bed. I was wearing compression socks and my legs were hooked up to a machine that helped with blood flow. My doctor said that my legs were carrying at least 20 pounds of water weight in each leg, so that made walking even harder. I not only had the water weight in my legs, but it had spread throughout my body, making it harder to walk because I wasn’t used to the extra weight. I continued to walk around my room most of the night.

Wednesday morning, my physical therapist came in. She was my first physical therapist I had had and the last time she saw me, I was crying because I couldn’t move my legs. She gave me a huge hug and told me how happy she was to hear about my progress. “I want to walk today…without my walker!” She looked surprised and tried telling me that I wasn’t ready for that. I winked at her and said, “Trust me….I CAN do it!” She gave me a look like she instantly knew that I had broken the “rules” and started laughing. “Ok girl, show me what you can do!” She put my support belt around me and then had me walk from my bed to the chair. My legs were a lot stronger from the night before, so it almost looked like I had been walking for a long time on my own. “Wowwww….ok then!” I told her I wanted to walk to my doctor. Dr. Nicocio was up at the front counter, like he was many mornings. I walked up to him and said, “Hey Doc! Can I go home now??” He was floored, in a good way. He looked over at my physical therapist, almost as if he was asking for her permission but also wondering how on earth I was walking. He then said “Ummm….well…how does tomorrow sound?” “I’ll take it!!” He then did a few exams on me to check things out. He said that he would need to get everyone to sign off on me going home. I asked him for one favor. “I know that the rules of the hospital are for me to be wheeled out of here to my car when I’m discharged. I’m begging you to let me walk out of here…on my own!” He gave me a sideways smile, and said “I’ll see what I can do.”

Wednesday, I had to spend the day passing tests in order to go home. My occupational therapist’s test was the hardest. She took me outside to take a walk on unlevel ground and up and down stairs and sidewalks. I was in a lot of pain. This was a lot harder than I had anticipated. I kept having to take breaks and sit down for a while. There were a couple of times that I felt as though my legs were going to just give out but I didn’t say anything, in fear of them keeping me at the hospital longer. The pain got so bad that my cortisol levels started dropping rapidly and we had to go back inside for me to get meds and to relax. I was still on Cloud 9! I had my nurse make a video of me walking and I sent it to everyone. My new friend, Jennifer, in Tower 6, started crying. She ran around the floor, showing all of my former nurses and everyone who knew me the video. Later that evening, Mike wheeled me over to Tower 6 to visit the night shift, who wasn’t aware that I could walk yet. The first person we saw was Yaya. She was excited to see me, but when I stood up from the wheelchair and walked over to her, she started screeching. One of my favorite nurses was working that night. I showed her that I could walk and gave her a big hug. She laughed at how short I was and that she hadn’t realized it before I could stand up.

We went back over to the inpatient rehab unit. I ran into a sweet, older couple that I had spoken to a few times. The wife was there because of a stroke. They noticed that I was walking. They hadn’t known why I had been there, so when I told them that I was paralyzed less than two days before, they were blown away. The husband jokingly told me that I couldn’t leave. He said that I had the greatest spirit and I literally lit up the entire floor. He said that I had eyes that just went into people and made them feel good. I felt so warm about the nice things he had to say about me. As much as I wanted to leave the hospital, I had also grown close to so many people that I may or may never see again. I’ve grown to accept that mixed emotion, as I’ve had it many times. I normally do end up running into a lot of caretakers that I’ve had in the past with every hospital trip.

The next day, I was able to get everyone to sign off on my discharge. It was so surreal. I knew that I still had a lot of work to do to get back to the same physical condition I was in before, but I was so ready to go home. We packed up all of my stuff and I got my wish….they let me WALK out of the hospital! My journey did not end there. We went from the hospital to my chiropractor’s office, with hopes that he could help with the pain I had in my back. He has helped me so much in the past so I put all of my faith in his care. Although he did help, the pain would return the same day I saw him.

I spent the next several weeks trying to figure out why I was in so much pain. It took a huge toll on my emotional well being. I’m normally a very social person, but I ended up withdrawing from wanting to see anyone or even being on social media much. I was being proactive with my health. I found a new doctor that was committed to helping me with this journey of health. It was very encouraging. I also saw Dr. Nicocio again, and he suggested that I get cortisone injections in my SI joints. I got the injections and for the first few days, I was in a tremendous amount of pain. The doctor who administered the injections told me to expect more pain, and he also told me to expect that the first time I got the injections, it would provide relief anywhere from a few days to a few weeks. After the first few days, I finally woke up in no pain. It was amazing! I was able to cook and clean again. I felt amazing! For the first time in quite a while, I finally felt like I was returning back to “normal.”

Right before New Years, I got hit with the flu. I knew I had to double my dosage of corticosteroids, as the flu can literally kill me. After a couple of weeks, I started feeling better, so I went down to my normal dose of coritosteroids. However, the pain in my SI joints had returned. My dad came over to celebrate Christmas with us. We had all of the kids here. It was a good night, but I was in a great deal of pain, so I had to go soak in the bathtub a few times. Mike recognized that my cortisol levels were low, so he had me updose. I went upstairs and took another bath. I had time to think and realized that I was having low cortisol symptoms and that I should really have taken more corticosteroids than I had taken, so I got out of the bath and got dressed. My phone was downstairs so I could not text anyone to ask for more meds. Everyone was watching a movie, so it was loud. I started feeling dizzy so I sat on the toilet for a few minutes. I started to panic because I knew that I needed meds as soon as possible.

I started heading towards the door and then I felt it coming….it was too late…I passed out. Austin found me a few minutes later, unconscious. Mike gave me an emergency injection, while Taylor called 911. I woke up….but I couldn’t move and I couldn’t speak. Mike was yelling, “Jen, can you hear me?”

Tears ran down my face. I was scared. I couldn’t believe this was happening… again!!! I could hear Taylor on the phone with the 911 operator. She was asking if I was responsive. Trapped in my body again, all I could do was blink once to let them know I was ok and that I could understand….