My story begins when I was just a small child. I was always so tired and had trouble keeping up with my sisters.
As I grew older, the one thing that remained the same was that I was always battling extreme fatigue and could sleep hours at a time.When I was in high school, instead of going to after school activities with my friends, I would go home and sleep! Some days I would even sleep from after school until the next morning and get up and do it all again.
My mother and I didn’t get along very well and I was in a very abusive relationship where the fight to survive was a part of my daily life. I feel that my adrenal glands were heavily strained during this time causing them damage.
Soon after high school, I met my sweet husband and we settled down. We had two daughters. I had to be hospitalized during both pregnancies and was given medications to keep me from miscarrying.
Our first daughter was healthy but our second daughter was born with two holes in her heart. One of the holes was as large as a quarter and the other was much smaller.
Because of the location of one of the holes, I was told that she would only live to be 6 months old. I would not accept that prognosis and moved onto a specialist at Children’s Hospital in Dallas, Texas. The doctor had his concerns but insisted that he could do the repair but it would have to wait until she turned one year old.
So for the first year of her life, I stayed up, night after night, stressed and listening to her lungs. When fluid filled them, I knew it was time for a dose of Lasix which would help ease her breathing. I spent many sleepless nights afraid her heart would stop in her sleep.
I prayed to GOD and started to let Him handle all the worry for me. I had faith He would fix her and He did!At one year old she went through open heart surgery and is completely healed from her heart disease and taken off all meds!
Since the birth of my first child, I have had a problem with kidney stones. I have been to many specialists. A mineral metabolism specialist prescribed blood pressure meds to clear the calcium from my blood. Because I had undiagnosed Addison’s Disease at that time, my BP was already low and the medicine made me very dizzy and faint so I had to stop taking it.
I have been through 7 lithotripsies and many stents. I had this done so often that my urologist gave me permission to remove the stents by myself after 2 weeks following the lithos.
I do not know how I could have made it through all of this other than with the help of GOD. Two years ago, I had to fight for my life. I was borderline septic and spent 1 week in the ICU trying to clear the sepsis. My blood pressure would be low and then high. The docs were having trouble stabilizing it. I did manage to pull through the infection. My kidney function is at only 30% now. Both kidneys keep forming many stones.
On Feb 25, 2013, I was referred to see an endocrinologist. At the appointment, I had a cortisol blood test done. It came back at 0. After that I had an ACTH blood test and a 24 hour urine cortisol test. The results confirmed a diagnosis of Primary Addison’s Disease.
I was given hydrocortisone but still felt extremely fatigued and constantly hungry. After talking to others with Addison’s Disease about which steroid they were taking, I was able to switch to prednisone from hydrocortisone. It is now the perfect fit. I eat less and have more energy too!
I must take my meds every single day for the rest of my life so I can take care of and spend time with my family. I do not feel normal at all. I feel like I just manage. I have learned to set standards on what I can do each day and not to overdo it. If I do, it could mean a day or two in bed away from my family. It means being unable to function. Yes, steroids give me short term energy, but fatigue is still felt within my body.
Just recently, I have had to use my emergency shot of Solu-Cortef two times because of kidney stones causing me to go into pre-crisis. I am at 13 kidney stone surgeries and counting.
I currently have 20 stones in my left kidney and 8 in my right kidney. Soon I will go through my next lithotripsy. Every day I have moderate to severe pain due to kidney stones. I would be interested to talk with anyone else, who like me, gets multiple kidney stones with Addison’s Disease.
I run a webpage and make many memes advocating for Addison’s Disease.
Awareness is Key!!