Some of you may wonder why I have named this blog “zebraontheside.” First of all, Cushing’s Disease is a huge part of my life and it has impacted every aspect of my life in some way or another. Not only has it impacted my life but it also impacts those who continue to support me. This is not a part time thing. However, in order to move on with my life and live it, I have to make it part time. When I got sick, I did everything that I could to keep moving forward. I ignored my body and pushed hard. I did 2 half marathons during my diagnosis and recovery time. I did two degrees when I was sick and maintained full time status. I had surgery twice and stayed in school full time on top of my demanding part time jobs. I tried to keep it secret. I didn’t want people to know. Cushing’s was so fundamental to my problems but I wanted to keep it secret and took a lot of the blame for “failings” from my illness. It was only afterwards that I stopped and accepted the role that Cushing’s has played in my life. Not everyone is that way and it is OK. If I could do it again, I would do the same thing.
When I got sick, there was not a large online community. Doctors also shunned any type of internet resource and I felt like it was wrong to use them. I was also young. I believed that this could be kept part time. The thing that I worried about was that if I used my illness as a crutch, I would not be forced to push myself and I would loose out on life as a result. My warning to others is that this is dangerous. This disease is not to be taken lightly. You can get very sick and die if you push yourself too much. Balance. Also learning to push doctors was important too. After surgery, I pushed myself 10 years with multiple untreated deficiencies. I trusted my doctors that I was fine in spite of having lost almost my entire pituitary. I liked not being on any medication. Then my body couldn’t do it. My blood pressure kept dropping below 100/60 and my pulse was in the low 50’s. My temperature dropped to 96. I could barely make it from bed to the couch. Only then did I have no choice but to accept my limitations and question my doctor.
Now I am getting help and life is improving. I fully plan on going back to keeping this as private as possible. Perceptions change when others know about illness. Personal effort changes when illness is moved out of the background. While Cushing’s Disease and my hormonal deficiencies impact my life, I don’t want it to be my entire life.