The story of Sarah
Addison disease, Addisonian Crisis, Adrenal Crisis
I have been treated for thyroid problems, anxiety, menstrual problems, allergies, and a bulging disk in my lower back since I was a teenager. I’ve always had more medical issues than the average person my age.
I was a pretty solid athlete in my pre-teen and early teenage years. Unfortunately, my skills slightly declined the older I got. I was a better athlete at age 13 than I was at 18. I thought puberty had not done me justice and my athleticism did not carry over into my adult body. Looking back, this probably wasn’t the case. My doctor believes I had an undiagnosed disease taking over my body for 10 years!
In college, my physical health got even worse but I really didn’t think anything was wrong with me. I thought if you didn’t exercise and you ate terribly that you just felt like this. I thought I was just “out of shape.” I started losing more and more weight and sleeping more and more. My lymph nodes were enlarged. I would lose my breath with minimal physical activity. I was constantly dehydrated, light headed with low blood pressure and low blood sugar. My skin completion got darker. I had a loss of appetite and often vomited. When I did eat, I craved salty foods.
Doctors diagnosed me with anemia, gerd, and continued to change my thyroid medication dosage. They even feared I had Lymphoma and did minor surgery to find out that was not the case. They also considered doing thyroid surgery on me but in the end, did not. Nothing the doctors and specialists suggested made me better. When I was 22 years old, I suffered some seizers. They thought this was due to dehydration but still no one could figure out what the underlying root of all these problems were.
By age 23, I was sleeping 15-18 hours a day and ate very little. I looked so thin and sick; people would ask me if I needed to go to the emergency room. I always responded, “No…I feel like the ALL the time!” My mom thought I was going to die before we figured out what was wrong with me. Finally, she insisted I see an integrative health specialist in August of 2015 because it was obvious at that point that my endocrinologist seemed to be missing something.
My first holistic doctor’s appointment was 3 hours long. She talked to me extensively about my symptoms and my life literally from conception! She had me stand for five minutes. After standing, my blood pressure was 60/40 and my heart rate was 140 beats per minute. My body was really working hard Just to STAND there! Within that first appointment, this holistic doctor knew what was wrong with me. She said, “I think you have Addison’s Disease.” Later, tests confirmed she was correct.
My life totally changed after I was correctly diagnosed…in such a good way!
After taking a year off school and work to focus on my health treatment, I was able to work a full-time job! I still have set backs now and then but nothing like the struggles I was suffering with five and a half years ago. I see my integrative health specialist every few months. I am still a medical science experiment every day because this disease is so rare. (Plus…we later found out that I also have Lyme Disease just to throw another variable into the equation.)
My health care treatment is a mixture of allopathic and holistic medicine. There are 4 prescription medications I take for my Addison’s disease and Hypothyroidism. I take a few other prescriptions and SEVERAL vitamins and supplements that are just as important as the prescriptions. Currently, I take medication 5 times a day which totals to about 50 pills daily. This is how I will live the rest of my life. I wouldn’t change any of it though because of how much better I feel! (By the way, I no longer take allergy medication or iron medication because allergies and anemia weren’t my real problem.)
Five and a half years after my diagnosis, I work a full-time job as an Assistant Toddler Teacher. After working an 8-hour day, I enjoy relaxing and spending time with my dog. I am also active in advocating for early childhood education, natural solutions, holistic health care options, and spreading awareness about rare diseases.I will continue to fight so we have more research on how to treat and diagnose Addison’s disease. Having a rare disease is a life long journey but there is a light at the end of the tunnel. Keep fighting! Be persistent with your doctors.