Cynthia Alberson

@cynthia-alberson | contributor
She is a 30-something inactive CPA. She has a very rare genetic disorder called autoimmune-polyendocrine-candidiasis-ectodermal dystrophy. She lives in Mississippi with her husband, daughter, dog (Biscuit), and two cats (Snickers and Butterfinger).

Teaching Your Children to Give Emergency Solu Cortef Injections

I do not get many opportunities to one-up my disease. By far the most dangerous and deadly component of APECED (APS Type 1) is Addison’s disease, or adrenal insufficiency. Any major stressor, such as an accident, broken bone, high fever or stomach virus could require an emergency injection of Solu Cortef. This does not come in an auto-injector, nor is it carried on ambulances or administered by emergency personnel. The primary mission of Adrenal Insufficiency United is to change this, but until then, it is up to me and my family to make sure I have this when I need it. I have required my injection on multiple occasions since my diagnosis, one of which was immediately followed by a trip to the emergency room where I arrived comatose. High doses of hydrocortisone are vital to keep my organs from shutting down. When I was first diagnosed, I asked for B12 shots so I could practice giving myself intramuscular injections and also allow my husband to do the same. At the time, my daughter was in kindergarten, so we simply taught her the importance of communicating my condition to others and pointing out the location of my emergency injection kit. Now that my daughter has grown into a confident, 11-year-old young lady, I decided it was time for her to learn to give me an injection. The more people around me who are capable of acting in an emergency, the better my chances. What I did not think about, however, was how this simple, 10-minute lesson would empower her, build her confidence and give her a feeling of supremacy over my disease. In her entire memory, Addison’s disease has been an enemy; it has been her adversary, one that has robbed her of a “normal” mother. I thought I was doing something for myself, but I was actually giving my daughter an amazing gift – the knowledge and ability to defeat this evil monster she has known for so long. Many people remarked at how comfortable she seemed. Yes, she was a bit too giddy at jabbing her mother with a big needle! But just for the record, she has no interest (at the moment) in going into the medical field. Her interests are in STEM; maybe she has been overexposed to doctors and hospitals. However, I am convinced if she manages to combine the two, one day she might make an excellent Bond villain, and I can be her chronically cranky sidekick. Editor’s note: This is based on an individual’s experience and should not be taken as medical advice. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

When I Run Out of 'Spoons,' This Is What My Day Is Like

I think every patient with a chronic illness knows Christine Miserandino’s “spoon theory.” People with chronic illness use spoons to describe how much energy we have. She was able to put into words what so many of us experience. But what happens when we run out of “spoons”? The experience varies for each of us. My alarm typically goes off at 8 a.m., and I can usually drag myself up. Today I cannot. I can barely get the message from my brain to my arm to my hand. I turn off the alarm and go back to sleep. Ten hours was not enough. Three hours later, I wake again, groggy, and I test my brain first. It is somewhat functioning. Through the fog, it knows I have a doctor’s appointment at 1, and I need to be out of bed soon if I am to make it. It also knows I need steroids, soon, although it cannot figure out why there are not any next to my bed. Why? I need to fix that, but I cannot comprehend such complicated logic right now. My brain tells my legs to move. Nope. Not happening. It spends the next half-hour trying, and failing, to convince my legs they are needed in this process. My bladder is screaming now that, after over 13 hours in bed, it is full. It takes another 20 or 30 minutes before enough adrenaline kicks in to power my body out of bed. I finally manage to get up, dizzy, and grasp my nightstand until the wave passes. I stumble to the bathroom, then go directly to the kitchen and take my morning handful of medications, including steroids. I manage to pour myself a cup of coffee, stagger to the couch and lie down for half an hour to give the steroids a chance to kick in. I realize I am not going to make it to the doctor today, because, well, I am too sick to go. Once the steroids kick in enough for me to form coherent sentences, I cancel my afternoon. I am freezing. I have a migraine now. I have turned up the heat and the fireplace, and I am bundled under three blankets. The television is on reruns of one of my favorite old shows for comfort. I fall asleep, but b y 2 p.m., I manage to get up and brush my teeth, eat a few crackers and open a Coke . My brain feels like the fog is lifting. However, I speak with my husband on the phone, and he says I am still slurring my words. I lie back down and doze off. He wakes me when he gets home, makes sure I am still alive and covers the basic questions: who is the president, what is your middle name, what is our daughters’ teacher’s name? I pass, so no emergency. (This is painfully routine after so many years.) By 7 p.m., I am slowly coming back to life. However, I am sore from head to toe. I am groggy. I feel like I have been in a losing battle with an 18-wheeler, but I am able to think fairly clearly again, eat dinner and move around the house a bit when I want to. I no longer have to debate the merits of making it to the bathroom versus cleaning up the mess if I don’t. Small victories. By 9, I have enough energy to check out the Kindle deals of the day. Yay! I have had the adrenal insufficiency portion of my diagnosis for over five years. In theory, I should be able to prevent most situations like this; however, days like today show how difficult this is to manage. No medication, no human, can replace the natural body’s function. My cortisol was too low, and I was experiencing the first tier of symptoms. In many cases, Addisonian crisis is caused by an extreme situation, such as injury or illness. However, prolonged, “lower-level” stressors can also cause difficulties, sneaking up on you like the stalkers they are. According to Mayo Clinic, symptoms of a crisis can include but may not be limited to: severe vomiting and diarrhea pain in the lower back or legs low blood pressure pain in abdomen loss of consciousness I have experienced this before , and I know when it is time for me to take an injection (followed by a trip to the ER) versus when to just up my oral dose and ride it out. I knew I had been “overdoing” it for a week prior to this, and I have an appointment with my endocrinologist in a few days to discuss how I can avoid this in the future. It will probably be several more days before I feel decent, and a week before I recover from it. I think the worst part is that brain fog is generally one of the first symptoms, and that makes it more difficult to manage. How does running out of spoons affect you? Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

18 Ways I Rock My Chronic Illness

I have spent most of the past 11 years in a medical nightmare, bouncing from doctor to doctor, receiving misdiagnosis after misdiagnosis. In the summer of 2014, my health finally forced me to give up my part-time job as a certified public accountant (CPA) to become a full-time patient. I was finally diagnosed with a rare genetic disorder in January 2014. Needless to say, this has not been all sunshine and roses. However, I have survived, and somehow, I have even managed to thrive. Chronic, rare disease? Well, I can’t make it go away, but I can try and make the best of it. Whenever I am having a bad day (or week, or even month), I try to remind myself of the positives. I have always been determined to do my best at whatever I do, so I am going to rock this chronic illness thing! The ways I rock my chronic illness: 1. I never have to fake being sick to get out of doing things. I fake being well when I can. 2. A Netflix binge is often just what the doctor ordered. 3. My last hospitalist received continuing education credit for researching my disease before coming to my room. 4. I am single-handedly keeping two pharmacists employed and contributing to several doctors’ children’s private school tuition. 5. I have a medical reason for being overweight and my GI doctor expressly forbade me from doing crunches or sit-ups. 6. Because I am a jokester and a prankster, my doctors and nurses always smile and laugh when they see me. If I am not jovial, they immediately go into “crisis mode.” 7. My disease and status as a clinical study patient at the National Institutes of Health (NIH) make me fascinating  and generally get me VIP treatment with new doctors. 8. My doctors discuss me when they see one another outside the office. Everyone knows my name. “Cynthia-itis” is a joking way to describe a patient who has “every negative reaction possible to a medication.” 9. I gave up Ann Taylor and heels for dressy yoga pants and comfy yoga pants. 10. If I wear makeup now, people feel I have made an extra effort. 11. Doing the majority of my shopping on Amazon is a medical necessity. 12. Facebook keeps me socially connected and sane and is therefore a requirement. 13. Doing the laundry counts as cardio. 14. Throwing meat and a few cans of veggies in the Crockpot garners kudos for cooking dinner. 15. When people ask what I have, I no longer have to listen to horror stories of their distant relatives who have a much worse case of it — blank stares can be preferable! 16. If I say what I have really fast, most people are too dumbfounded to respond — autoimmune-polyendocrine-candidiasis-ectodermal dystrophy.  Silence is golden! 17. Nobody expects my house to be clean. 18. People have low expectations of me. I almost always meet them. Now, would I give all of this fabulousness up to be healthy? In a second! But since that isn’t going to happen, I figure it can’t hurt to at least try to find a silver lining in all of this. Chronic illness sucks. It can suck the life right out of you… literally. I spent many years absolutely miserable. I was 34 when I was finally correctly diagnosed with a genetic disorder. I’m done with living in a dark, miserable, lonely hole. I am chronically cranky, but I am living and laughing! The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.