“MOM! She’s HITTING ME!!!” A voice from the other room bellows, the first of a million little arguments I will have to referee today. My left arm feels weak. I don’t remember that yesterday. My right leg is tingling, and that hasn’t happened in some time. What does this mean? Is this a new relapse?
7:00am: The dog is whining again. What does he want now? “STOP WEARING MY CLOTHES!!” The voice has the tone of two iron pots banging together in my ear. Ah yes, another argument. My left arm is noticeably weaker than it was yesterday, and I just know another relapse has started. It has only been 2 months since I had steroids last, and it is probably too soon to do them again. The steroids, that make me feel insane, make my face bloat, and my hair fall out. Those lovely things. “MOM I am HUNGRY!!”
8:00am: Driving the kids to school, vision is blurry. Eyes are dim, and my focus is difficult to keep. My left hand trembles noticeably as I grip the wheel. Should I call someone to help drive? Is this even safe? My God. How is this my life? “STOP LOOKING AT ME LIKE THAT! YOU’RE MEAN,” echoes from the tiny mouth to her sister in the back seat.
9:00 am: Home from the drop offs (4 kids, 4 different schools.) I stop to glance in the mirror briefly. I look like I have climbed out of some deep, dank tomb somewhere. What happened to me? My hair is in clumps. I have no time for this! This hand. It’s definitely weak. Off to call the neurologist. What will this mean? Is my medicine no longer working? This is the fifth medication I have tried. How many more will I need to try? Will any of them ever work?
10:00am: I have once again forgotten to take my six morning pills. Now I am taking them late. Why don’t I ever learn? I need to start writing things down. My memory is horrendous. The phone rings. Is that the neurologist calling back? I am losing more and more grip with this left hand, and my eye is DEFINITELY worse. “Hello, this is your daughter’s school. She’s in the office with a 101 degree temp and she just vomited. You need to come get her.” Again- how is this my life??
12:00 pm: The child is vomiting. Repeatedly. Oh, and having diarrhea. Lucky me. I am sure I will be next. The phone rings- it’s the neurologist. “Do you want steroids, then?” He says. “That’s what I can offer you.” Oh, Joy. Another 3 days in and out of the infusion center.
2:00pm: My mother comes to help me with the vomiting child, and I am driving myself to the hospital for the first of three days of steroid infusions. The other children are done with school in one hour, so I hope its fast. My left hand is incredibly weak, and my vision has decreased tremendously since this morning.
3:00 pm: They found a vein on the first stick, and I sat, listening to the click-clicking of the IV pump as the infusion made its way into my arm. I made small talk with the nurses, who were almost all my former coworkers. I recall when I was one of them. I used to be the one starting the IVs. It is hitting me now: I am ILL.
4:00pm: home, and all kids picked up. IV left in place for tomorrow’s infusion. “MOM!!!! I’M HUNGRY!!!!!” scream the kids. What the hell am I going to serve these kids for dinner? My husband is working until midnight as an ER physician, so I am on my own until then. I guess it’s delivery pizza again!! For the third time this month. They must think I am insane at the pizza place.
6:00: Is it me, or has the volume of homework increased ten fold since I was in school? Why does every child have an essay due tomorrow? “MOM!! SHE HIT ME AGAIN!!” Boy the steroids are really hitting me now. I am going to LOSE IT!
8:00 pm: Kids bathed. Homework done. I am flying like I have had 10,000 cups of coffee, and the IV left in my arm was a bad idea. The youngest nearly yanked it out twice. 2 are in bed, 4 are still awake. Most of the homework is done. 2 are fighting over the TV, and 2 massive teenage boys are consuming every single thing I have in the kitchen in a furious late night eating rampage. Boy, my vision is BAD.
10:00: There is no way I am going to sleep tonight. I will need to take something. This is too much. Everyone has finally quieted down, and my mind is running a marathon. Every single philosophical thought you can imagine is streaming through my steroid soaked brain, pondering the mysteries of the universe. WHY ME is a particularly interesting subject at this point. Well, off to sleep in a haze. Have to be up at 6:45 to do it all over again……..