Karen’s Story By Karen Orban
Editor: Jill Smith
In May 2012, I was diagnosed with Primary Adrenal Insufficiency or Addison’s Disease. Up until then, I had no idea that something was wrong with me. In truth, it had been so long since I felt good that I didn’t know what feeling good was like. It was my new normal.
It was the end of winter in Michigan and the temps were in the 70’s. I was wearing long sleeves and out for short periods of time. My skin began to become hyper-pigmented. I was getting darker and my face was getting blotchy. I remember telling my cousin that I hated the skin I’m in and nothing was working to clear it up. My hands, elbows and scars were getting really dark as well.
I went to the doctor for a routine physical and she zeroed in on the color of my skin. She sent me for bloodwork to be done right away. The results showed that I had Addison’s Disease.
It was after I was put on my life-saving hydrocortisone that I started feeling better. I started piecing together other symptoms I had been experiencing as well. I had been dizzy and lightheaded almost every day. One day I even blacked out at work and they sent me to Urgent Care. My blood came back low in potassium but I still didn’t have any answers. Time went on and so did the dizziness.
Our plant moved to a new building and now I was using the stairs to get to the offices. I found myself getting winded by the time I got to the top of the stairs. Something was not right. I was 5’6 and 135 lbs, why was I getting so winded?
The summer before diagnosis I decided to start exercising. Cardio was the answer but I was getting worse. My legs would cramp in the middle of the night, waking me from a dead sleep. I had nausea several mornings. I was also experiencing more debilitating migraine headaches.
We canned Dilly Beans in July and I ate every jar we had. I would finish off a jar of olives or pickles within 3 days time. My husband was lucky if he got any. I drank the juice too.
I’m coming up to my fourth anniversary of knowledge, that’s what I call it. My first two years I felt better but I still struggled with muscle weakness, nausea and dizziness. I struggled with holidays and with walking a 5k.
Last year I joined a support group and learned about up dosing and stress dosing. I knew I needed to increase my dose if I was sick, but now I know that I need to also stress dose if I do a 5k walk or have my family over for a holiday.
An endocrinologist can tell you that you should do these things for these situations but you have to learn what your actual needs are for each situation. Getting advise from those who have been living it helps a lot too.
I’m still working full time. This is the best I have felt and my hyperpigmentation has actually faded this winter. My endo increased my hydrocortisone to 20 mgs and it is now the right dose for me.
My job is stressful with deadlines and last minute overtime. The overtime has been excessive these past few months and I have learned my limits there too.
I missed my first holiday with family because of the effects of working too much and not increasing my dose when I should have. I chose to not increase my hydrocortisone because of work and therefore I was feeling the affects of Addison’s Disease on the holiday. I ended up having to increase my meds anyway.
These are the choices I have to make on a daily basis. I don’t want to keep taking increased medication for work because my body will become used to the higher dose. I try my best to minimize increased meds but sometimes it is necessary.
I am only prescribed my hydrocortisone for 30 days and my insurance does not see hydrocortisone as a maintenance drug like my thyroid medication. The problem we have with Addison’s Disease is that it is a maintenance medication. It is necessary to sustain our lives.
Awareness is Key!!!