Now back home. This was going to be some of the MOST depressing next few months I have ever had. I was still swollen, vomiting every day and night and in a very deeply low place in my head. I still had a perma cath in my neck. This was my access line for hemodialysis. Because it was in my neck, it was a straight shot to my heart, so it couldn't get wet. This meant no showers! I had to take baths. In the beginning when I first got home my mother or Chris had to give me a bath because I was too sick to do it myself. They had to dress me and even try to feed me. Then, they would clean up my vomit after I ate. They were both in charge of my meds. I didn't know what I was taking, I just took whatever they brought me. They had it all figured out. This was a continuous cycle.
We had a chair in our living room sitting near a window. I sat in that chair for 3 months. I was angry, depressed, shocked, sad, pissed, felt sorry for myself, you name it, I felt it. The only good thing was, all 20 something blood pressure meds had made my headaches go away.
I thought life sucked! And really at that time, it did! Next came the issue of fluids. Because I am on dialysis and do not urinate, I could only have 32oz of fluid a day. Yeah, you read that right, 32 ounces!!!!! So basically, I could have a few sips of water here and there throughout the day. I would usually puke it up but there is something about kidney failure and water. I was thirstier than I had ever been in my life. Water was like a drug to me. I would fight Chris and my mom over water. My mom was dead serious about this water restriction. She melted an ice cube to know how many ounces an ice cube had, she melted and measured Popsicles, jello, anything that would turn liquid at room temperature counted towards my 32 oz and she was strict! I began to resent her and Chris. I knew in my head that were doing it for my own good but it was really like an addiction.
A funny thing I do remember about this time was, I use to "pretend" to go to the bathroom and brush my teeth and I would stick my head under the faucet and drink and drink and drink. They believed I was really brushing my teeth because I puked all the time. One day I got busted!
Some nights when everyone went to sleep, I would sneak in the kitchen and get ice cubes quietly, but that didn't last long either because within minutes of eating the ice I would start vomiting. And when I vomit it is loud. My mom is a very light sleeper and she would come hold my hair as I puked in a bucket. She would say, "I heard you hitting that ice machine!" But she understood and always helped me clean myself up after a good puke. Even the nights I didn't sneak ice, I puked. So we did this routine for about two months. I can't even remember how long she lived with us. But she was taking care of me and Madeline during the day and then Chris took care of Madeline at night and my mom took me.
Being sick, needy, dependent really took a toll on my mom and I for awhile. We got to where we argued like when I was a teenager. I hated not being in control of my life, my child, my house, my everything. I was a kid again....only really sick. But she stuck in there with me and put up with all of my crap. She is a nurse and I am her very worst patient ever!
Just as all of this is going on, I started to have REAL withdrawals! I had been on morphine, Demerol, dilaudid, phenergan, xanax, all kinds of pain killers. Now that I am home, the "feel good stuff" was all gone. I now can completely understand why an alcoholic or drug user can't quit. The withdrawals are some of the most painful things a person can experience. It's like your body has decided to hate you and punish you. I would shake constantly. I was freezing cold and then suddenly start sweating profusely. It made me vomit more. My back hurt, my legs hurt, my entire body ached a deep pain.
One day Chris was driving me to dialysis and he hit a pothole. I thought my body was going to fall to pieces it hurt so bad. Any small bump in the road felt like being ran over by a dump truck. I said some really bad things to him, but its not like he could do anything about the road, but I sure was mad! The pain would eventually go away once I got through my withdrawals.
With HUS, low platelet count is a very common symptom. So, if you touched me I would bruise. I was black and blue from head to toe. I got lots of hugs and people were so nice but their hugs hurt so bad, physically. It was just a nightmare. I was so physically weak I couldn't even pick up or hold my Madeline. There was honestly some times in the beginning I wanted to throw in the towel. But in the back of my mind there was always Madeline.
Real nightmares started happening at night too. I started taking Ambien for sleep and it is a crazy med! One night I woke up and really saw somebody hanging from the ceiling. For some reason, I wasn't scared but I woke Chris up to tell him. He flew out of bed so fast! It is funny looking back on it now. I said to him,"Who is that person hanging from the ceiling?" He was totally freaked out. Other nights I would wake him up screaming......and the screams never woke me up. I have no memory of it. One night he had to be out of town, so a dear friend stayed the night with me and took care of me. She said I woke her up in the middle of the night and asked her, " Who is that man standing over us?" This freaked her out too! Needless to say, Ambien did not stay on my med regimen very long!
Linda Burke left a comment for Jeff Wilhelm
1 week ago