Advocacy

~”We know our bodies the best. We are our own resident experts when it comes to our health.”~Jennifer Burris

~This is a back story to my hospitalization during the week of my birthday. I had gone to the emergency room for chest pains and shortness of breath. My blood pressure was sky high that day along with the 14 days before. My heart never rests. It is the diastolic number that scared me the most and still does. It ranges from 95 to 125. The bottom number should be around 80 idealistically. Often, the bottom is what the top number would be in a normal healthy person. I have had heart and blood pressure problems since the beginning of my diagnosis. When I got to the ER this time, I was told I am not in any danger of dying and that the doctors are only there to provide life saving assistance. I thought to myself, isn’t that why I’m here. Chest pains, shortness of breath, and a dangerously high BP are all very serious. With my lupus, who knows what turn it could take. I watched my Mother shut down from multiple organ failure in less than 48 hours because the doctors didn’t think she was that serious.

~I was furious and sad at the lack of judgement when I was sent home that evening. That night I got oddly quiet. I had regressed back to the days of not caring because of the frustration built up trying to get someone to take me seriously and provide appropriate healthcare. The years of struggling to get doctors to understand that I know when my body is off. Not just off but in trouble and in need of intervention and evaluation. Having autoimmune diseases seems to be a lifetime of defending myself over circumstances I have no control over. Explaining myself over and over again. No, it is not in my head. No, I am not a hypochondriac. Yes, my ANA was positive. Yes, I really do have Lupus. It doesn’t just go away because you think I don’t have it. Every doctor needs to be explained and updated and then they have their own opinions. It is a medical hamster wheel and it gets ridiculous and tiring.

~I wasn’t going to do anything about this but the next morning I woke up no better and angry. I apprehensively called my primary. I couldn’t get through to her so I talked to her nurse. I told her what had happened. She was baffled and told me to go right back to the ER. She couldn’t believe I was sent home in that condition. I told her I am not going because I don’t want to waste my time. The nurse said this time she was going to make a call first to assure I would be taken care of properly. I put my faith in her words and was driven back in. This is now 2 visits in less than 24 hours. Not only did the call beforehand help, so did the persistence. I was hospitalized and ended up staying for 4 more days. There were tests run that showed why I was having trouble breathing and why the heart is working too hard. Answers to questions I had. Answers I knew needed to be found. Medication changes were done. All the things that should have happened the first time that I had to fight for the second time.

~Living in this body of mine has taught me the warning signs to look for. I know myself best. We become the resident experts of our bodies when we live with invisible illnesses long enough. We know what is flaring and when the flare is about to start. I feel we actually know more than the doctors sometimes. In my experience, they don’t know what to do for Lupus or Fibro patients. Because of the ambiguity of these diseases it is hard for healthcare workers to pin down any specifics. Having the strength to continually fight for ourselves can be redundant. But, I say don’t give up. We have to stay in this essential battle for the long haul. Keep your medical records handy. Become knowledgeable of the technical terms used by the doctors so you can keep up with them in a discussion. The more education you express to them about your own body the more they will have to take you seriously. The unwanted wool won’t be pulled over your eyes. It is a shame we have to go through such lengths but this is the war that rages inside us and to win we have to be vigilant. Stay strong butterflies. Stay encouraged. You got this! #LupusMariposa #LupusSucks #FightForCare #DoNotGiveUp #LupusWarriors #Mariposas #JustKeepFluttering