When the doctor told me back in 2016 that I would be battling lupus, the first question I asked him was if I was going to die. In the ’80s, I had a cousin die of lupus. They had no clue what she had until they autopsied her body, and found that her kidneys had shrunk to the size of raisins. This was all I knew about lupus. He told me that he was going to make sure that didn’t happen and that I needed to expect my first round of meds to take a while to kick in, but that it would help make things better.
When my cousin had her battle, she went from being a curvy woman to weighing in the 90-pound range when she finally succumbed to this disease. (I started off curvy and at my lowest weight, I was 109 lbs.) But the major difference is that doctors diagnosed me before death. At the time, I foolishly thought that getting medication for the disease meant I could go back to a “normal” life. I thought it would work like headache medicine: You take it, the headache goes away, and you go about your day. I certainly never thought it could kill me while I was still medicated because, well, I’m medicated, and that is supposed to stop lupus from beating my insides up … isn’t it?
Needless to say, I learned that what I thought was real and what was truly real were as different as night and day. I then decided that I would do all I could to live. Lupus could claim my life, but I would not allow that. I did everything I felt was humanly possible to give myself a fighting chance, including moving to a foreign country where the healthcare is more affordable and of a higher quality than in the United States. It also helps that they have a higher track record for diagnosis as well, allowing them to treat people sooner. I arrived at my new home, and before the first week was up, I had the opportunity to test the healthcare by being hospitalized for five days. Every fiber of my being was just of the mindset that lupus, no matter what, was going to spare my life and I would die of old age. Now, from this point forward, things have changed just a hair for me.
Many who know me know I am a fighter, and I will continue to be, but I have had a little change of heart on a few things recently. Currently, as I type this, it hurts to take a deep breath. Some days, it is a task just to swallow water, and yawning feels like my body has gotten out the dullest knife and is trying to stab me to death. A recent trip to the ER revealed lung issues. I spent eight days in the hospital last year with swollen lungs. This year, there were more lung issues. Then my follow-up visit with my primary doctor changed everything.
Another issue I have with lupus is it has caused my body to stop producing blood platelets, and he revealed a person could live for 10 years without producing sufficient platelets. Hearing this, I finally started accepting that lupus could, in fact, kill me through a back door.
Within a few weeks of that news, the internet went all abuzz about eight lives lost to lupus in just one week. This devastated me especially when I learned that some were because of lung issues. I have started making arrangements to get closer to my children in the U.S. I’m not giving up on living; I’m just finally accepting the possibility that I won’t. When I shared the doctor’s attempt at making me feel better with this 10-year news, my family did not like what he had to say. It may sound bad, but I found it a relief. While I want to live, I am OK if I don’t. I just want to make sure to love on my family, so they never have to wonder how I felt. But I don’t want to continue for another 30 or 40 years with the pains I am feeling so frequently now. I’m OK with dying because I have lived well.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.