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Mania, Psychosis and Steroids- Jen’s story

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.

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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.

Advocacy

Near death experience was a call to life- Jen’s story with adrenal insufficiency

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 “Near death experience was a call to life- Jen’s story with adrenal insufficiency”

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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 a 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:

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For Supplements:

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For Extra Support:

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Uncategorized

“You Have Adrenal Insufficiency….”

Four words that would change my life forever….”You have Adrenal Insufficiency…”

Hi, my name is Jen and I have an incurable disease. How’s that for sounding as though I am at a 12 step program meeting? In March of 2016, I was diagnosed with Adrenal Insufficiency, also known as Addison’s Disease. I had no idea how four words would change my life so drastically. But my journey didn’t start there. Let’s back up a bit….

It was New Year’s Eve of 2008. My ex husband and I went to Los Dos with our best friends to celebrate. Before our drinks or food came, I suddenly got a stabbing pain in my stomach and had to run to the restroom so that I didn’t puke all over the table. We left the restaurant and I continued to puke for several hours. The pain was so awful that my ex husband decided to take me to the emergency room, in fear that I had appendicitis. The doctor ran tests, gave me nausea and pain meds, and said “I have no idea what’s wrong with you…” Little did I know that for the next 8 years, I would hear that sentence over and over again. Little did I know that when I woke up on December 31, 2008, that would be the last day I would ever wake up not sick. Little did I know that my life was about to change forever.

The next 8 years of my life were spent in and out of emergency rooms, doctors’ offices, specialists’ offices and more hospital rooms than I can remember. I felt like a human lab rat. Hundreds of tests run, multiple different medications given to me that didn’t work, and doctors that either guessed at a possible diagnosis or simply decided that it was all in my head and I was just drug seeking. I literally felt like I was dying. I constantly had nausea and pain in my stomach. I went through long periods of time where I couldn’t even keep down water. I had uncontrollable anxiety, brain fog, low energy and I kept passing out and not breathing, for no apparent reason. My ex husband left me, the majority of my friends disappeared, my career fell apart and I could barely take care of my kids, let alone myself.

Fast forward to March of 2016. I was admitted into the hospital. This was nothing new to me, as I had come to refer to the hospital as my second home. However, one thing was very new to me….a doctor that refused to let me leave without figuring out what was wrong with me. Her name is Dr. Lam and I honestly don’t believe I would be here today if it were not for her persistence. Unlike all of the other doctors who had treated me in the past, Dr. Lam looked at my records and decided to run tests that were not already run a thousand times before. I was cautiously optimistic for the first time. She decided to discharge me, while waiting for some tests to come back and promised that she would call with the results. And when that call came in, my life would soon be changed.

“You have Adrenal Insufficiency…” Come again?? She started talking about cortisol levels and how I needed to see an Endocrinologist and be placed on corticosteroids right away. It was as though she was speaking to me in another language, yet I was so excited. As she was talking, my brain started to race. Could it be that this is the answer? Will I really be better if I just start taking medications? Will I finally feel normal again? I hung up and called my doctor right away. She had me come in that day and started me on Hydrocortisone. She explained what Adrenal Insufficiency was and gently told me that there was no cure for it and that I would be on corticosteroids for the rest of my life.

I was ecstatic that I was finally diagnosed! If taking a few pills every day would make me feel normal again, sign me up! I gladly had my prescription filled. I told all of my family and friends and everyone who had known how sick I was for years about my new diagnosis. This was it….my prayers had been answered! I had no idea that those four words would change my life forever, and I was about to embark on a whole new journey that I refer to as “My New Normal…”

Uncategorized

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!

Advocacy

5 steps to successfully getting the care you deserve!

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 SUCCESSFUL at getting the care I deserve.

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!

-Adrenal Alternatives Contributor- Jen Hudnall