there are good days and there are bad days

One of the main reasons why Lupus is so mysterious and challenging to live with, is due to the fact I never know when I am going to experience a flair. I can go days, weeks, even months without having any symptoms from Lupus. Outside of the occasional fatigue, I never know when I am going to have a bad day. I can be just fine for weeks at a time, then here comes Lupus. Knocking me to my A@%!! My flairs range from as mild as a skin rash to swollen joints and inflamed organs. One episode happened in 2005 when I was hospitalized for almost two months for lung infection and bacteria on my lungs. I left that hospital about 30 pounds heavier and with a pick line in my arm. This was probably the scariest moment in my life, I didn’t know what was going on. There would be times throughout the day that i would not be able to breath. All I could do was cry and just wait for it to pass. I was on tons of steroids and other medications, and would constantly have random outbreaks on various parts of my body. It would be so weird to sit and watch my lip swell like the Nutty Professor (I can joke about it now, then not so much ha). The most recent episode happened in September 2013. I was going through my regular day of work and school, but that night ended up driving myself to the emergency room to find out my gallbladder needed to be removed. I was doing just fine that day, having no pain and with plenty of energy. I’ve had small masses to appear on my kidneys and my liver, along with a host of other issues. It’s crazy how Lupus works and the many effects it has on different individuals. Thankfully I have never been on dialysis or had any organ/tissue replacement. I’ve learned to be aware of my stress levels and the amount of work I put on myself (still learning to pace myself) because stress is a main contributor to Lupus flairs. There were semesters I would have to sit out because I would be too sick to attend classes. Working and being a full-time student took its tole on me sometimes but I never wanted to give up (Graduation coming soon….YAY). Over the years I have come to realize that I can’t fight my body. When it tells me to rest, I sit my butt down. I’ve learned when I am doing too much and need to take a break, my body will reward me graciously for it. I know the winter months are the worst for me, that’s when I take extra precautions. I have no problem with taking a nap in the middle of the day, or telling someone I can’t hang out with them because my body told me to rest. I know my limits (sometimes). I KNOW ME, this journey has taught me a lot about myself. 


2 thoughts on “there are good days and there are bad days

  1. You are so wise in listening to the messages your body gives you, and learning the value of living within your limits. We will be no good to anyone if we don’t take good care of ourselves. I, too, have learned much more about myself than I would have ever learned if not for the challenges of having lupus. Perhaps the perspective of having to face our weaknesses becomes a strength… and makes a little more humble, which is always a good thing. Thank you for your post today. LA

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