Starting in 1985, I had one medical problem after another. Two babies, an ectopic pregnancy, a miscarriage, 9 surgeries for gallbladder, cysts, hysterectomy, a bowel resection…but nothing could have prepared me for what happened to me in 2001.
I was so sick I couldn’t get out of bed. I was exhausted, weak, I couldn’t eat, I was confused all the time, and all I did was sleep. I had debilitating fatigue, muscle weakness, cramping, low potassium, and nausea. The doctors kept attributing all my problems to my Crohn’s Disease. But I knew it was something else.
After several ER visits due to extreme weakness, I was finally admitted to the hospital by my Gastroenterologist. You know those doctors that tell you they ran every test in the book and didn’t find anything? Well this guy DID run EVERY test in the book, and he solved the big mystery: SECONDARY ADDISON’S DISEASE
I had never heard of it. Adrenal insufficiency? What does that mean? Where are your adrenal glands and what the heck do they do? What does the pituitary gland have to do with all of this? What is cortisol? ACTH? DHEA? And the biggest question “why didn’t someone figure out sooner what the hell was wrong with me?”
Addison’s Disease is failure of the adrenal glands. Lifelong treatment with steroids is necessary. Until the development of steroid meds like Hydrocortisone, Prednisone and Solu-medrol, adrenal disease was ultimately fatal. I saw my Sister’s endocrinologist, I went to the University of Chicago Hospital, and I took a trip to Mayo Clinic in Minnesota. None of these doctors could make me well. I was told to take my meds and I should feel better. How many of us have heard that line? It’s bullshit!
Because my endocrine system is shot ( pituitary, adrenals, thyroid and ovaries) I am a hot mess. The most important hormone the adrenals release is cortisol. Cortisol is the “flight or fight” hormone, it helps you handle stress. Major stress, such as injury or illness, dehydration, low potassium levels, vomiting, fever or an infection can throw you into an Addisonian crisis, which requires immediate medical attention.
I have had many trips to the ER in an ambulance and too many hospital stays to remember. When a person goes into crisis, IV steroids must be given to keep the patient from going into shock. This can all happen very fast. I keep a supply of steroid injections on hand so, if needed, I can give myself a shot before I head to the hospital. Because I take steroids everyday, infection or illness can be easily masked. Just as people take steroids to help with inflammation from allergies, asthma or rashes, my steroids can hide a problem until you are very sick or in pain. In 2005 I had a severe diverticulitis attack without even knowing what was going on. The steroids kept the inflammation at bay and the infection hidden so I didn’t have pain. One morning I woke up in terrible pain and I ended up in the ER. An MRI showed a mass in my colon and I needed emergency surgery to remove and repair the damage.
There are so many side effects for a person on daily steroid therapy. It damages bones, the lining of the stomach, weakens your immune system, can cause cataracts, depression and insomnia. Even GOOD stress can land me in the ER. It doesn’t have to be something bad to affect your stress level, and with no cortisol, an Addisonian is in big trouble. Many times my family noticed I was in trouble and got me to the ER. Confusion is one of the first symptoms for me, and then I just get stupid. I don’t even realize what’s happening to me.
I have to wear a medic alert bracelet and I keep a list of all my meds in my wallet, as does each of my family members.
Addison’s is my major illness. I rarely think about the others: Crohns, Seizure Disorder, Hypopituitary, Hypothyroid, Endometriosis, Hypertension and Fibromyalgia (I think that’s it). All of my siblings have some type of auto immune problems. Spread among us is Hashimoto’s, Raynaud’s, thrombocytopenia, Endometriosis, and pernicious anemia.
I do not suffer with daily pain as so many of my “blog friends” do, and I am thankful for that. But, my life has been forever altered by this disease. Days, weeks, months and years have been robbed from me because of my inability to function. From one day to the next I never know how I am going to feel. Sadly, I have more bad days than good. My family has been there for me always and for that I am thankful. Addison’s Disease has attempted to take my life….but it hasn’t! I fight this S.O.B. everyday…and I fight like a GIRL!
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.