Butterfly Flight Amber Blackburn
I have had lupus for 12 years. I had symptoms for over 20. The hardest part of having lupus is of course the pain and all the medical issues are hard. The mental side of having a chronic illness is also hard, sometimes overwhelmingly hard. But in the long run, for me the hardest part has been having to give up my career. I loved my job as a Cardio Thoracic Surgery Step Down RN so much and was so excited for the coming years. When I first got really sick and spent like a week in the hospital, and left with no real answers. Other than here’s some prednisone and a list of follow ups. At that time I was working full time, while also going to school full time for my Masters in Nursing Education.
It was my dream was to teach, because I loved working with students, new hires, and new grads. But lupus took all that. I had to quit school 12 weeks into my first semester. Eventually about 5 years later, after trying several “easier” jobs I had to leave the profession and go on disability. I hold out hope that one day I’ll be able to go back to the field I love in some capacity.
I’ve learned the need for patient advocacy. As a nurse I knew how important it was and how often we had to advocate for patients. In order to make sure they got what they needed. But I never realized just how much as a chronically ill patient I would have to advocate for myself. It has been amazing to me how little we are listened to.
I kind of have two pieces of advice wrapped up in one. First it is so important that as mentioned above, that we MUST advocate for ourselves. If we don’t stand up for ourselves no one else will. To go along with that, it’s VERY important that as a patient we track and write down all of our symptoms. Especially documenting our pain, high and low, and what we did to treat it, as well as if the treatment worked. How does this have anything to do with advocating for ourselves? Just think about how many times you’ve told your dr about a new symptom, or how much worse your pain is and were blown off. One thing I learned both as a nurse, and as a patient, doctors do better when they can physically hold something and look at data. So to better advocate for yourself, keep a journal of your pain and other symptoms.
I think my friends, both fellow lupies and not, and family keep me strong. On the days when I’m not feeling strong I know who I can go to. Who will hold me up, who will encourage me, and who will be there to love me. My faith is also very important to me and keeps me strong.
#lupusincolor #butterfliesofhope #flightofthebutterflies #Brave #Courageous #Strong