Adrenal insufficiency

Hello everyone, welcome to chronicallyjuliann.com. Today the topic I want to discuss is adrenal insufficiency… and that is because I was diagnosed with it, again, today because my cortisol levels were undetectable per lab work.

Cortisol helps your body respond effectively to stress. It also plays a role in bone health, immune system response, and the metabolism of food. Without the proper levels, one can experience dehydration, pain in abdomen, fatigue, sudden dizziness, severe chills, vomiting, and even loss of consciousness. Low blood pressure is also common. (Side note, I have experienced all of these symptoms recently.)

The low levels in my blood, mixed with my very intense symptoms, convinced my medical team that I had adrenal insufficiency again.

For those of you who are unaware, I was treated for adrenal insufficiency last year through April 2020. I stopped taking the steroids when my endocrinologist said my glands were working properly again and I could discontinue the medicine. I did as my doctor said but felt lots of symptoms return – like fatigue and weakness.

Currently, steroids such as Cortef are the only treatment available to treat this disease. But the side effects are very extreme – weight gain, irritability, and hair growth are a few.

Now we fast forward to last week when I had my surgery. The procedure went very well, but my heart rate was too fast, or what medical professionals refer to as tachycardia. At complete rest, my heart rate spiked to 180 bpm and a crash cart had to be brought in. Luckily, they were able to reduce my heart rate with a medication called Adenosine and no paddles were needed.

After days of tests coming back normal, including an echocardiogram and a CT scan to rule out a pulmonary embolism, the medical doctor decided to check my cortisol levels again. Sure enough my hypothesis was correct! My adrenal glands were failing again. He explained to me how lucky I am to not have died during surgery since I did not receive a loading dose of steroids.  

Lastly, it is a life-threatening condition that I will have to manage for the rest of my life. For example, when the body is under stress (e.g. fighting an infection or during surgery), this deficiency of cortisol can result in death. During those times patients are supposed to double their regular dose or receive a “loading dose” through an IV. I had neither before my surgery because I had the “all clear” from my previous physician.

I am grateful to have an answer as to why I had such severe symptoms. Getting news that you have a life threatening condition is never easy, but it at least validates the fact that I have not been well the past 6 months.

I hope you learned something interesting from this post. Follow me on Instagram for more information @chronically_juliann

2019: A year in review.

2019 was a challenging and trying year. I felt immense stress the entire year because of my health issues. I did not go longer than a month without a hospital admission, including the hospital admission I am currently having. In total, I was hospitalized for over 70 days this calendar year, meaning I missed over two months of my daily life. This put a strain on my marriage and our finances since it resulted in me no longer working. The financial struggle that came with that decision has not been easy. Neither has the emotional toll it’s taken; I loved working and always found my sense of self through my job title. The transition to not working has made me have to reevaluate my self worth and work on my self esteem. 

There were definitely difficult moments in my relationship with Will this year, but we are now stronger than ever before! We decided our communication was the greatest of importance. We strived to speak honestly and openly with each other, knowing that each of us was coming from a place of love and utmost commitment to our marriage. We had our fights, but we never let them overshadow the growth we were making. We learned from them and let them make us better individuals and a better couple. 

While it was the most taxing year we’ve had since being married, there have been some truly beautiful moments in between the pain. For example, we began the year by taking our honeymoon vacation to Florida. We also had the opportunity to travel to California to visit with my family. We experienced Diane getting married to an incredible man. And we found new friends and a new hobby through Wolfpack Game Night. 

As I reflect on the past year, I cannot help but be saddened by the state of my health. I have dealt with depression and anxiety throughout my entire life, but it was especially challenging to overcome my demons in 2019. However, I am very proud of myself because I did not revert to negative coping mechanisms like I have in the past, such as purging or self harm. Instead I chose positive stress relieving activities, like drawing, meditation, and exercise. This made the bad times manageable and the good times even more enjoyable!

I have set some goals for 2020 that I intend to stick to, like regaining my independence and maintaining 30 minutes of both creative and active activities a day. I have also pledged to eat healthier and make self care a priority. 

I hope 2020 brings less chaos and more love for all of us. I hope you set goals for yourself and work on improving yourself. Even if you do not meet your intended goal, or have to adjust it after four months, just deciding that you want to better yourself is powerful and can result in change. 

Here are a selection of memories from 2019 for you to peruse and enjoy. I know these photos bring me joy and return me to times filled with laughter and love. I hope they do the same for you.

Happy new year. – Jules

January:

February:

March:

April:

May:

June:

July:

August:

September:

October:

November:

December:

My inpatient hospital guide.

As someone who spends a great deal of time in the hospital, I like to have certain items I always bring with me that make the trip easier. I thought I would share my list with you and ask you to comment with any suggestions of products you use!

Notebook for all health related information

Most important to me is my “healthcare notebook.” I carry this book with me daily so I can access the information at any time and so if there is an emergency others can know the medicines I am on and what doctors treat me. I organize it into different topic areas such as “doctors appointments”, “medical purchase receipts”, “vitals log”, “medication list”, “home health information”, and “questions to ask physician.” Anyone dealing with an illness could benefit from this sort of note-taking system. Doctors run on data, so having an accurate log of vitals, ostomy output amount, and other important symptoms is the easiest way for them to make appropriate decisions. I jot down any question that comes into my head throughout the day, ensuring the 5-10 minutes a day I spend with the physician are productive and I don’t forget what I wanted to say. I also write down their answers, because processing that information and retaining it can be difficult – especially if on sedating medication. This particular notebook was gifted to me by my mother in law. It reads “just a girl boss building her empire.” It makes me happy every time I look at it! So have fun with the cover and get whichever size feels most useful for you.

Deep V-neck shirts to access Portabella (my port.)

I always pack comfortable clothing that can access my port, which helps me avoid wearing a terrible/oversized gown during my stay. I actually leave a small duffle bag packed with a few v-neck shirts, coordinating pajama pants or sweatpants, fuzzy socks with grips on the bottom, comfy underwear, and a robe in my room just in case. It might seem excessive to have this packed prematurely, but it saves so much time when trying to get to an emergency room.

It is important you wear clothes in which the nurses can easily access your port and that doctors can evaluate your ostomy without interference. Because I am conscious about what the staff will need access to, I have never been told I have to use a gown instead! This is a big deal for me, because my OCD flares when I am inpatient. I can control so little about the situation, that being able to control my clothes is helpful. It also feels more relaxing and simulates the feeling of comfort I receive at home.

Purchased on Amazon (see hyperlink)

Next, when I am in the hospital I always want my heated blanket. I am unreasonably cold all the time due to my adrenal failure, so the freezing hospital rooms are very harsh. It also helps relieve some of my pain, by relaxing my muscles. The blanket helps bring a pop of color to the room and allows it to not feel so white-washed. The particular blanket I purchased is great because it doubles as a wearable cape. There is a large slit in the center of the fabric that allows you to drape it around your body. I highly recommend it!

Eye-mask and earplugs.

Sleep can be difficult to obtain during a hospital stay. With nurses interrupting it to get vitals and doctors coming in early in the morning, it can be challenging to get restful sleep. I help combat this with earplugs and an eye-mask. The eye-mask allows me to sleep during the day if nighttime rest was unsuccessful and the earplugs are useful all the time, especially with beeping monitors, loud patients, and overhead alerts.

For entertainment I bring a selection of books (this time a comic book), magazines, and playing cards. It can be lonely in a hospital room so having things to do by yourself is super important. I love to learn new Solitaire games. Did you know there was more than just one way to play? In fact, there is over 1,000 known variations!

Ways to entertain myself in the hospital.

I hope you never have a hospital stay, but if you do, these items can greatly improve your stay! Comment with what you bring that helps you the most!

Women in pain.

UAB ER (Current admission), 2019

Welcome to Chronically Juliann! I use this handle because I suffer from multiple chronic conditions, some of which interact and interfere with the others. Stress absolutely makes my adrenal failure worse, and therefore more dangerous. But bipolar disorder is stress inducing. As is colitis, which can flare without warning. Any one of these diseases can land me in the hospital, but when they work against each other it becomes clear that I will require a long hospitalization.

Current admission UAB, 2019

I am currently admitted to UAB for a myriad of symptoms and a cocktail of issues: Abdominal pain, check! Stomal swelling, check! Rectal bleeding, check! Low immune response, check! Tachycardia, check!

While I am grateful to be admitted and receiving IV fluids, pain medication, and frequent vitals checks, it is unbelievably stressful and aggravating to be here again. I feel like the doctors do not listen to me or take my opinion into consideration. I began to get scared and feel terribly bad for the patients that can’t advocate for themselves because they don’t have a medical background. Then I realized they may have an advantage, because when I speak medical jargon and specify names of sensitive tests, I truly believe the doctors think I google symptoms and webmd info to “get what I want.” When in actuality, I have worked in the medical field for 8 years and have suffered from chronic illness for almost 15 years. Therefore, my knowledge is from a lived experience and high level training.

Also, I watch the doctors (especially male doctors) take my husband’s opinion more seriously than my own. I can tell them about my pain and bleeding and they don’t seem to care, or come up with a plan to evaluate. But when Will mentions the same issues, suddenly new tests are ordered or consultations for different doctors are finally being placed.

I decided to look into this more and found some disturbing statistics. Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. For example, women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We women wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes. In regards to the issue of chronic pain, women account for 70% of the people diagnosed, and yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. The exact reason for this is still unknown, and more studies are warranted. However, as previously noted, research on female pain remains limited and therefore likely will not be completed.

Research indicates we are not listened to and feel our needs are subordinate to that of the “system” (which includes the insurance companies and hospital administrators.) It is increasingly apparent that hospital staff (nurses and doctors) are unable to be sufficiently patient focused because they are beholden more to shareholders and administrators than they are to their patients. This may not be a fault of the individual, but rather a systemic problem that is perpetuated by profit margins and lobbyists. However, it is the patient that suffers because of it.

While this all feels seriously discouraging, I am going to continue to advocate for myself. As stated in my previous blogs, I as a patient know more about my body than physicians. Today when my team of doctors come in to round, I am going to be firm in expressing my concerns and desires. I want to know where my bleeding is coming from. And I would like my pain better controlled. Not because I am hysterical, but because I am experiencing real pain.

DCH ER (previous admission), 2018

Day 16 in the hospital.

As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.

On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.

First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)

So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!

As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.

The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.

Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.

Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)

In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.