I was late. Again. The car wouldn't start. You would think this would bring us to arguing and major stress but, what can you do. Fix it if you can and go. Thankfully it was the car my husband was driving to work. We jumped it but back to square one of why it drained it self after not being used for a couple days. Just put a new alternator in it. Boo.
After getting it jumped, I ran back in the house to put dinner in the crock pot. I so terribly hate coming home from an infusion , tired and hungry and emotionally spent, only to have to make dinner. I hate dinner. : ) But am thankful to have it?
So 15 minutes late but I just got a "no big deal". I apologized profusely but they just looked at me saying,"its an infusion. Your here forever".
The Taper Update
We have been rocking 1/2 ml to 1ml of steroid. First three days I noticed he was a little tired. I wanted to wait to see if labs were going to match what I was seeing. They did come back up from last month. I called and left a message from rheumatology. I told them I was concerned he wasn't tolerating the taper. They called me back. Our doctor was not concerned. His labs are still with in normal range. Just higher. As always I love the wait and see. I told the nurse that an instinct level I wasn't feeling to great. I told them I would however, keep a close eye on him.
Every couple months we have trouble with IV. It was one of those months. We had the same nurse as last month. This was the one nurse who had success with his IV and celebrated. This month we weren't so lucky. After two trys, they paged an anesthesiologist. He got it. He was very aggressive. Very official. Scary looking because he was in surgery gear. Gary surprisingly was very compliant with him. He was use to having his patient laying. He had blood every where and dropped the flush on the floor. He was so surprised. He went on and on about how his mind expected there to be a table to rest the flush on. Lots of crying but Justin Bieber was on the TV. Gary watched Never Say Never. He hardly noticed he was getting an IV until the needle hit the skin.
Poor buddy had trouble falling asleep because the chair. We had him turn around to sleep on it backwards. The way home was hard. He cried and cried because his head hurt. He said he needed to throw up. Hitting traffic is no fun when he feels like that. As always his feeling turned to anger. One minute I am his hero the next and I quote, "a big a*s*Ho**". Well. Well. Well. That's a new symptom. Do you wash those words out?
I treated myself. I went and got a tall pumpkin spice latte from Starbucks. The nurse said, "you look like you could use some coffee." The infusion center was empty so I felt confident slipping out to the lobby to get one. Is it pathetic I still smile about a latte I had yesterday?
I fear I feeling a little sorry for myself though. Not a lot just a little. And why should I feel sorry for me, its my son I need to feel sorry for. But get over it and stand strong I say. I am not alone in the battle. But even my husband forgets to ask. I told him his labs were up. I was waiting to hear from the doctors. He forgot to ask about the results of that call. In all fairness, I saw him for thirty seconds though. Even though we have an infusion, cheer leading practice still happens. I had to drop Gary off to him, and off running again.
|Made with an app. Pic of Gary in middle during yesterdays infusion.|
*Thank you to for the comments on previous posts! I hope one day Gary will say, remember when that tasted funny.