New Dimension in Lupus Journey

After 27 years of carefully monitoring my body, working closely with my medical team to stay on top of my lupus and leading what seemed like a "normal life" despite lupus, I had the rug pulled from underneath me. I was recently hospitalized for three days.  That was the easy part, let's look at the journey it took to get there.

During the early part of the week beginning July 9th, we had a weather system alert for African Saharan dessert sand blowing from around the world. No biggie, it’s just sand.  No, it was not, the weatherman alerted those with allergies, weak immune systems and other hearth matters to stay inside or wear a mask as we might experience problems. Fast forward to Sunday, July 15th. I attended the early morning service, feeling tired but I had responsibilities at that mass and a meeting right afterwards.  Apparently, something about my voice caught a parishioner’s attention and they became concerned.  After church, they immediately sought me out in the crowd and asked me if I was ok. I just presumed since it was the early mass and morning are not my thing and that was the reason my voice was off.  Sunday evening, I began coughing. By Monday, my appetite is low and Tuesday even lower and my coughing literally out of control. I have gone through low appetites before.  At some point overnight, I went to the bathroom and never left. I woke up and discovered myself looking at a silver bar. I thought I was dreaming of being in jail, never have been, and realized it was a dream and realized my face was on the floor. I tried to get up but could not. I crawled, slowly back to the foot and struggled to get back into bed. I was weak. I tossed and turned some more and finally drifted off to sleep.

Finally, Wednesday morning and I feel like eating and set out to enjoy jimmy dean mini pancakes and sausage.  Then took my meds.  That did not turn out well at all. Everything came up, meds and all. I felt horrible. I called my son. I told him what happened. I slept. I woke up hungry not wanting anything in the house. I asked my son to bring me some fried chicken from Popeyes. I could not hold that either. I tried to eat some crackers but went ended up going to bed hungry and, in some pain, still coughing profusely. 

I felt things taking a turn for the worse, so I called to let my son’s grandmothers know that I was sick and get some tips. She is a retired top-notch RN that is still licensed.  I was very weak by this time. Little beknown to me, she picked up on how sick that I was, and she came to see me for herself. She knocked on my bedroom window and startled me.  I managed to stumble to the front door and unlock it, but by the time I managed to unlock the door I could feel my body giving way.  I fell to the floor. I could still hear her, but I was too weak to move, and I was soaking wet as those I was sitting in a tub.  I knocked head so hard that I developed a knot, my first and hopefully last concussion.  She managed to pick me up.  She tried to lift me like a RN but was not going to work.  I managed to gain some strength to help here pick me up. We made it back to my room. I tried to dry me off and help cool down.  She called my son and uncle.  He and his wife came over.  They went back home and brought me some chicken and rice.  I was finally able to keep something down. She also had me drinking coke.

By now my son has arrived.  He was not much help as this was not something that he knew how to help with.  They tried to make me go to the emergency. I have a windows unit in my room and had him to bring me a fan.  I told them I was feeling better and felt that a good night rest I should be ok. The rice in the soup was helping or so I thought. Overnight I found once again on the bathroom floor. I recall waking up because my memory for the most part is a blur. I remember having her to take my house key incase I needed her. I remember her coming over and then calling my uncle and aunt again.  She took my temperature and I was still running a low-grade fever. She needed to know my blood pressure. My uncle went and got his blood pressure machine.  While he was gone, I need to use the bathroom and she had to help me and while in there I had an epiphany and realized that I may need the hospital. This was more than I had ever dealt with before. My son was called from work again. Luckily, he has a great boss that told him to do what he need to do, this was his mother.  While waiting on my son, they attempted to read my blood pressure on my right arm, nothing and then the left arm, still nothing.  Initially figuring the machine was broken or perhaps needed a battery, my uncle tried it on himself and it worked.  We ruled out the machine. We did not realize that was another hint of things to come. I was in bad shape. I had literally lost my voice, still coughing.  Those three falls did their own little thing to me.  I must have bit the insides of my mouth or scratched it badly. It had these sores like when you scratch it or something and a busted lip. It was a nightmare. They wanted to call an ambulance, but I refused that. 

My son took me to the ER and in less than an hour I was admitted to the Trauma hospital Ben Taub. It turns out my potassium was at 2.9, blood pressure was so low they could not get a reading, I had a concussion, electrolytes were off and of course I was out of remission. They hard for twelve hours before I was assigned to a room. It was a moment in time that I never want to experience. The trauma team working on me thought I should stop working and go on disability. I investigated it.  After two weeks of recovery and getting back into life, I realized that was not going to work for me at this time.  I still feel that I can contribute to society and earn my own way. I do not trust the government for those getting any assistance.  I want to work if I can. It will not be a high-powered job as they suggested I avoid as much stress as possible. The day will come when I need to stop, today is not that day.  I am a lupus warrior!






Sign In or Register to comment.