Saturday, December 18, 2010

Tonight as I was sitting in the living room with Alan, Kara, Donny, & the girls, I heard some beautiful voices outside. We opened the front door and my friends from Northside surgery and X-ray were on the porch singing Christmas carols. What a beautiful surprise. To all of you who took time out of your very busy days, I appreciate it more than you'll ever know. You sounded like absolute angels and it was so lovely to see everyone. Evidently, Kara, Donny & Alan were all in on the surprise and they kept it remarkably well. I have never been serenaded before and it was a delightful experience. I am going to be trying a medication that helps tighten the stomach & intestine and will hopefully help to empty it better. Then I won't have such a feeling of fullness and maybe can eat. I NEED to gain weight! Also, I'll probably be looking at more pain blocks. Hope it all helps. Shawn, Jen, & Cooper coming home next week. I can't wait. I continue to pray for each & everyone of you. Have a beautiful holiday. Linda

Saturday, December 11, 2010

I'm back and it seems like I haven't written forever. I had not been feeling well for a long time. I have a lot of pain, nausea, etc. all of the time. Well, last Friday, everything got out of hand. I had been up all night vomiting & becoming increasingly weak so we went to Emergency. The usual dehydration, needing fluids, needing potassium, trying to stop the vomiting was going on. After 11 hours in ER, I was finally admitted to a floor. I had begged for a private room, but since I had to be monitored, there were no private rooms. My roommate was quite ill and required constant, constant care. However, she seemed to be quite hungry. She wasn't allowed to eat after midnight, so she sent her significant other out to KFC and they ate until about 11:30 p.m. The worst part of that was the fact that I was so nauseated and all I could smell all night were the remains of the KFC. The alarm on her IV pump went off continuously, but she could not hear it. So, everytime her alarm or mine went off, I had to call the nurse. They also gave her several units of blood throughout the evening which added to the confusion. At 1:00 a.m., they decided to put a catheter in her, so all the overhead lights went on. At 2:23 a.m., the nurses aide came in to give her a bath to prepare her for an 8:00 a.m. surgery. I actually thought it was a joke, a bad joke. As, I held my head in my hands, sick as ever, they were having a nice discussion in bed B. Then we had vitals every time you turned around. I asked them to keep our door shut because of the noise in the hall. but that just wasn't happening. Each time they would bang in and out of the room, I would crawl out of bed, drag all my wires, my infusion pump, and get as close to the door as possible. I couldn't reach it, so I clung to the wall and kicked my leg backwards to shut the door, almost falling a few times. Then, the nurse would come in the room to see why my heart rate was so high. Then around 4:00 a.m., my nurse drew blood from the mediport only after the lab had come in and tried to draw it from an arm vein. More vital signs, staff coming in the room looking for equipment, etc. By the time Alan got back to the hospital before 7:00 a.m., I was ready to lose my mind. The Dr. came in and wanted a CT scan of the brain to try to figure out the nausea. It was relentless. I couldn't go down for the scan at first due to the nausea/vomiting. Finally, a little later that morning, after several IV meds, I made it downstairs. The scan came back negative, I got moved to another room, got a bit of sleep, and got some relief from the sickness. I went home Sunday afternoon. Thinks were OK until I woke up at 2:00 a.m. Wednesday morning with the same symptoms. Back to the ER where I spent the day getting fluids, potassium, pain meds, antibiotics, & anti-nausea meds. I went home that day and am trying to stay away from the hospital. Friday, I had my follow-up chest and abdomen CT scan and I had to drink a bottle of barium. I prayed it would stay down and not trigger the nausea again. I got through the test. Dr. Goldstein called me Friday night and said there was no indication of metastesis. Yay! He said lungs have a lot of fibrosis, they're taking a beating, but seem to be holding their own. That's related to the scleroderma. Still going to physical therapy for frozen left shoulder. I am trying to get up and walk around the house every hour to regain strength. I go to Pittsburgh Wednesday to see scleroderma Dr. This is quite lengthy, but I hope it updates everyone. Take care, Linda