Thursday, February 08, 2018

Sick | Life with a Chronic Illness

The story of how I learned I had #adrenalinsufficiency and my experience with #chronic #illness



I wasn't going to write this post. I don't usually disclose details about my health pubically other than sharing brief updates here on the blog and doing some advocacy in my own time. While many of you know that I have a chronic illness and sometimes have bad days, the specifics of what those days entail are only known by those closest to me. I am writing this because so many of you asked me to share details after I talked about my seven year life anniversary last fall.


I do want to be clear about something. I am not writing this get sympathy or imply that my situation is better or worse than anyone else's. We are all dealt our cards in life and this is the hand I have been given. I try to make the best of it and I am grateful for every day that I wake up and can enjoy my life.

The rest of this post will be long and full of a lot of medical details, so if that's not for you, please feel free to skip it. You won't hurt my feelings, but if you are interested in what life with a chronic illness is like, continue reading.

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Seven years ago, I was diagnosed with Addison's disease or primary adrenal insufficiency. I had been sick for several years prior and was making a steady nosedive in the last nine months leading up to this particular day.

In the early morning hours of December 10th, 2010, my (then) husband found me collapsed on my living room floor when he got up to go to work. I was not responsive, so he called for an ambulance. When the paramedics arrived, they took my vitals and determined that I was very close to death in what they originally thought was diabetic shock. My blood pressure was 60/40, core body temp was just at 86°F and my blood glucose was at 34. They gave me a dextrose injection to bring my blood sugar level up, started giving me intravenous fluids and rushed me to the local emergency room.

I don't remember anything from about 10 p.m. the night before until twelve hours after being admitted to the hospital that morning and waking up from the coma. I didn't even remember that I was married when I was asked who the guy beside me was. All the details above from those first hours were relayed to me by my ex-husband and medical records.

WHAT ADRENAL INSUFFICIENCY IS
The adrenal glands are two tiny organs that look a lot like mini fortune cookies and fold over the top of each kidney. They are comprised of two parts: the cortex, or the outer layer, and the medulla, the inner layer. These glands produce several hormones that are essential to life: cortisol, aldosterone, and adrenaline.

The adrenal cortex produces cortisol and aldosterone. Cortisol is a steroid hormone that regulates metabolism, acts as an anti-inflammatory, influences memory formation, controls electrolyte balance and influences blood pressure and nearly every cell in the body has cortisol receptors, so it plays a major part in every bodily function in humans. Aldosterone is another steroid hormone that mainly controls the body's natural sodium balance, prompting the kidneys and colon to reabsorb sodium back into the bloodstream and therefore keeping the body from dehydrating.

Adrenaline is produced in the adrenal medulla and essentially controls the body's fight or flight response in times of stress.

Primary adrenal insufficiency is when your adrenal glands fail or die (or in some cases, are removed surgically) and no longer produce these vital hormones. The human body cannot survive without these.

I have complete adrenal failure, both the cortex and medulla. My doctors believe my adrenal glands have always been faulty, but probably failed about two years prior to my coma. They also attribute my failure to autoimmune disorder because I have other conditions that are also caused by this.

THE SYMPTOMS OF ADRENAL FAILURE
When the emergency room doctor came in with my final lab results confirming the adrenal failure, I immediately pulled my phone out and researched the disease to see if I had could connect any of the symptoms I had been experiencing to this condition. The list was long and I checked off every single one. As you can see from these symptoms, adrenal insufficiency affects every system of the body from the heart and lungs to kidney function and even the skin.

  • chronic fatigue and severe lethargy (I would often sleep twenty hours a day.)
  • chronic inflammation (for me, this was in my lungs. I always felt like I couldn't breathe.)
  • muscle weakness (I was unable to hold a pencil and write because of  this weakness.)
  • loss of appetite and unexplained weight loss
  • low blood pressure
  • blotchy, dark tanning or freckling of the skin (I looked like Snookie in the middle of winter)
  • dangerously low blood sugar
  • nausea, vomiting, and diarrhea
  • inability to cope with stress
  • moodiness, irritability, anxiety, and depression
  • intolerance to heat or cold
  • craving salty foods (I was eating a Costco-sized jar of green olives a day)
  • headaches
  • irregular menstrual cycles
  • dehydration
  • disorientation, psychosis, slurred speech, inability to form simple sentences
  • dizziness
  • muscle aches
  • joint pain
  • fever
  • convulsions and/or loss of consciousness
  • sudden, severe pain in the legs, abdomen or lower back
  • hyponatremia (low sodium levels)
  • hyperkalemia (high potassium levels)
  • abnormalities in blood count (my white blood cells were extremely low - causing the leukemia scare)

HOW I WAS DIAGNOSED
Unfortunately, the symptoms of adrenal insufficiency mimic so many other diseases, that diagnosing it is very difficult and takes a long time. It is also believed that no two cases of AI are exactly alike, as many patients experience some of the symptoms but not others and this differs with everyone who has it.

The two years leading up to my diagnosis, I couldn't stand upright for more than thirty seconds without blacking out because my blood pressure was dropping so low. I had no appetite and could only sip broth as everything else would make me sick. I looked like I spent an hour in a tanning booth every day. I felt like I had the flu all the time because of the severe body aches and inflammation.

I met with several specialists over that period of time, had so many tests run and heard everything from possible lupus to "worst-case scenario," leukemia. Because there is not one definitive test for adrenal problems, and many doctors aren't familiar with adrenal function and what complete failure looks like, it's hard to get the tests needed to confirm the diagnosis. It took me having to go into a coma and the doctor at the emergency room (Dr. House, as I lovingly call him) not going home for three days until he figured out what was wrong with me, before I got some answers.

WHAT A DAY WITH ADRENAL INSUFFICIENCY LOOKS LIKE
I consider myself blessed because not many people who get to the point of going into a coma from adrenal failure survive it. When I first heard the diagnosis, I was afraid that I would feel like I had for the last two years, for the rest of my life, but my doctor was really encouraging, breaking the disease down so I could understand it, and immediately recommended an online support group with over 8,000 members worldwide who have some form of adrenal insufficiency.

Day-to-day life can be pretty tricky at first, but once you learn to manage medications and how the adrenal system is supposed to function, it becomes a lot easier. In order to supplement the hormones that my body is no longer producing, I have to take two different steroids. One acts as the cortisol and the other as the aldosterone. Without these medications, I would have no fight or flight response, meaning, when I am faced with a stressor (something as simple as a verbal argument to something severe like being in a car accident or losing a loved one) my body would begin shutting down. I'd go into organ failure, slip into a coma and would die.

Because the human body produces these steroids at varying levels throughout the day and spikes production of them during stressful times and illnesses like the flu, taking medication needs to follow this pattern. I can't just take a pill in the morning and forget about it. I have to take different doses throughout the day to mimic the natural circadian rhythm production of hormones and increase when I'm sick or facing more stress than usual. I also have an emergency steroid injection that I can give myself when I begin to go into a crisis situation.

There is no cure for adrenal insufficiency and the medications have quite a few side effects that are sometimes worse than the disease itself. I still deal with chronic pain every day. Some days, it's so bad that I struggle to get out of bed. I'm always tired but the steroids cause insomnia, making restful sleep nearly impossible. I have no immune system, or more specifically, my immune system attacks normal functions in my body, so I have to be extremely careful to avoid illness at all costs. I currently take twelve pills a day and lots of supplements to stay alive. Because my condition is autoimmune, I will occasionally go through periods where I'll reject my medications and have to go into the hospital for infusions to get my levels back up to where they need to be.

One of the hardest things about having this condition (other than feeling like crap) is the stigma that comes with having a chronic illness. I don't look sick, so many people don't believe I am sick. I don't have a disability that is visible to the naked eye and I don't have something like cancer that I can point out on a scan of my body. I think anyone who deals with a chronic illness can attest to this. It's hard enough to feel bad all the time but even more difficult to have to convince others how sick you are. This is particularly true when someone with an invisible chronic condition is applying for disability. Illness discrimination is a real thing in that arena.

This is one issue that I will always advocate for. I want to encourage people to understand that chronic illness comes in many forms, mental and physical, many of which can be seen, but many cannot. The visibility of an illness does not determine the validity of it. We all have challenges we are working to overcome. We all have a story. This is mine.

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If you stuck around to the end of this post, thank you so much for taking the time to read. It means a lot that so many of you asked me to share more about my illness and what I deal with every day. <3

If you have any questions about adrenal insufficiency or my experience with chronic illness, please leave them below and I'll try to answer them the best I can. To learn more about Addison's disease and adrenal insufficiency, visit the National Adrenal Diseases Foundation.

The post Sick | Life with a Chronic Illness first appeared on A Simpler Grace. If you enjoyed this article, please feel free to share it with your friends! Don't forget to join the ASG Tribe!

22 comments:

  1. I had no idea, as a new reader of your blog. Addison's I do know about, because it is one of those diseases that humans and dogs also get. I had a Jack Russel that we almost lost before a vet finally diagnosed her, and yes, the meds, the keeping stresses down, the constant injections were part of dealing with her and the disease. Thank you for this reminder about chronic illness not always being visible. I have 3 family members, all with different situations, and it can be infuriating to see how they are dismissed by those not understanding. Sometimes I still need to be reminded to keep my heart eyes open as I interact with others who may have unseen struggles though, so thank you.

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  2. I know of one other blogger who has Addison's, Rachel, who has a food blog empire. Maybe the same person? Thank you so much for coming by to read the post today, Beth. It means a lot to me. <3

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  3. Wow - You're amazing to fight this every day! {{hugs}}

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  4. I think it's wonderful that you are sharing your story. While I have a different issue, I know what it's like when people don't believe you're sick because you don't look it. You are so strong! Thank you for sharing this!

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  5. Kim, you are so encouraging. Thank you so much for coming by to read and for your sweet words. <3

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  6. I've also heard that cats can get Addison's disease. It's so interesting how similar their little bodies work to ours. Thank you so much for stopping by to read this, Judy. I'm happy to have you visit the blog! <3

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  7. You're so sweet, Charlotte. Thank you for coming by to read. <3

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  8. Thank you so much for sharing this, Lecy, and I'm so so proud of you for writing about your illness and publishing it here so others can understand what you go through on a day-to-day basis.. but also to connect and offer support to people who suffer and feel they are alone <3

    I had no idea what this was before I started reading, but you were so detailed and clear. Sending all my love your way, and thank you for this.

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  9. I'm glad you shared about your experience and what you deal with each day. I know another blogger who has Addison's as well and I didn't know a whole lot about it, so now I can understand her story as well. Much love to you.

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  10. Thank you so much, Lecy, for being so open and honest about your condition. I think we can all learn from you... because yes, there is stigma with many illnesses, but especially the ones that others cannot see. It's so important that people get educated about chronic (invisible) illnesses and you're doing your part in talking about your condition.

    I am sure you don't want pity, but I want you to know that I am sorry you had to go through such a scary experience to get a diagnosis and that you have to live with a chronic illness.

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  11. I didn't know anything about this illness, and I can't imagine dealing with so many of these symptoms every day. Thank you for sharing though. I think learning about people's personal stories is just one step to making people realize that chronic illness can be naked to the eye, but still very much real.

    -Lauren
    www.shootingstarsmag.net

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  12. Thank you so much for your sweet words, Ashley. <3

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  13. Thank you so much, San! You're right - we do need more education about chronic invisible illnesses. I appreciate you coming by to read and your kind words. <3

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  14. Thank you so much for coming by to read, Lauren. <3

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  15. I think it is so important that we share our stories and I'm proud of you for sharing yours. It's not to garner sympathy. It's to raise awareness of your particular illness - so other people can understand it better, eradicate the stigma, and so that someone who is walking in our shoes in this exact moment can feel less alone. It takes a lot of courage to share what you did. Be proud of you. I know that you'll help someone who stumbles upon your words.
    Chronic pain and invisible illnesses are very difficult and isolating...it's so easy to feel like you're the only one on the planet living with it. Truth is, there's a lot of us out there. It's good to know that there is. I wish there wasn't but...you know...life and stuff. You're awesome. Thanks for sharing this xoxo

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  16. You're amazing and I love that you are willing to share this with us. I agree with what everyone has said here - that we need more education about chronic illnesses so that we can eradicate the stigma around it. Big hugs to you, friend.

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  17. Wow, I admire your courage to write so openly about it. I’ll be honest with you, I’d had only heard of Addison’s disease because I had seen a few dogs with it in the past, I didn’t actually know it affected humans as well, pardon my ignorance. You know Sara Strand right? She’s got a dead pituitary gland I believe and she doesn’t produce cortisol. I imagine you’re on a host of meds trying to manage it as best as they say you can, but it sure must be frustrating at the best of times.
    Thanks for sharing hun. xo

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  18. Lecy, thank you for sharing this. I heard of the term spoonie a few years ago and it is such a good way to describe what a person with a chronic illness goes through.
    We need more education about chronic illnesses so everyone can understand more about it and not judge someone because they don't look ill.
    I agree with San - I know you don't want sympathy but I am sorry that you've been through all this and continue to on a daily basis.

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  19. Yes, dogs and cats can both have adrenal insufficiency. I do know Sara but I had no idea about her health. That's so interesting!

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  20. Thank you so much for coming by to read and for your sweet words, Anthea. <3

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