Monday was a good day, any day I get up out of bed is a good day. The technician from Hill-Rom said that he would come out and disarm the annoying noise my bed makes when you take off the brake, it was a high pitch squealing noise… we said it’s mostly for the hospitals. He said he was going to come out in the afternoon so I was kind of waiting for him. Heather told me I should give him a call and I’m glad I did, he said he would be out about 3:30 PM so I had time to take Robby to the wharf and back before my caregiver came in at 2 PM, unfortunately I waited until about 12:30 PM to call him. I’m glad I got it done. Went to bed and now I’m just relaxing and watching Dr. Phil.
Tuesday was another day spent in bed. Of course the personal care took a lot longer than we wanted but I did get a nice long hot bath. It’s kind of a bummer when one caregiver leaves and the other one comes in and in our, it doesn’t give me much time to myself. Sometimes I think that the reason I don’t sleep at night is because I know that I will have all night and all morning to myself. For some reason I sleep really good about an hour or 2 before my morning caregiver comes in. I got my portable mattress today and the guys showed me how to set it up, it’s going to be perfect. It came in a box but I found a duffel bag online but it will fit into perfectly for only $20. It will be a good bag to carry and store it in. I saw on the news that James Durbin did a secret concert somewhere here in Santa Cruz, I think they only gave tickets away on a radio station. Robby sister belongs to James Durbin’s cousin’s best friend, small world? She asked me if I wanted an autograph CD, that would be awesome.
Wednesday Daniel from ATG rehab came by to give my chair the once over so I can make sure it will be okay for my road trip. I went down to the Metro bus station and they gave me these really long, REALLY yellow tie down straps to put on my chair but they are way too long. Daniel said they have a tiedown kits that will work better and won’t be an eyesore so he ordered those for me along with a new cushion cover for my seat cushion, it’s getting really ripped up little. I thought the bearings were going out in my back wheels again and it seemed to be pulling towards the right… the bad news is I need a new motor for my chair, I know that’s not going to be cheap but hopefully we will be able to get it ordered and install it before my trip, I’m glad I didn’t wait any longer to call. Everything is coming together and it’s just going to be a matter of starting to pack February 1st and I will be ready to go by the time we leave February 18th. I’m sure we will forget a few things but that’s the way it always goes. I even found, well Karen found them, a couple of apps that go on my phone to find a good place to eat and a good motel were ever were going to stop… that should come in handy.
Thursday was a little bit warmer than it has been so Robby and I took advantage of It and went for a long cruise. We went through the lagoon, down to the end of the wharf and back and through the boardwalk and back. I wanted to cruise along the river but I was afraid to with the motor going out in my chair, definitely not the best place to be stranded. I came back and Gabe came over to show me and the girls how to use the lift on the Van manually in case it breaks again or all the power goes out. Karen was smart enough to think of videotaping it, I’m so glad she did, and we put it on YouTube in case we need to access it while were on a road trip. I found the name of the guy in Watsonville that works on the kind of lift that I have and I talked to him a little bit but didn’t really understand a lot so Gabe is going to talk to him tomorrow, I’m so thankful for Gabe. Teresa put me to bed and I was so glad because it is FREEZING out there. I watched a couple of episodes of Dr. Phil and fell asleep.
Friday of coarse was my massage, personal care and a nice long hot bath. The gang came over to play cribbage and I lost 5 bucks, I’ll get them next time. Robby was acting really funny all day and when my uncle came to get the cribbage table set up Robby through up all over the floor and just acted like he kept wanting to go outside but didn’t really do anything. Before everybody left he looked like he was feeling better so if he’s not better in the morning I guess I will take him to the vet, thank God they are open on Saturday. After everybody left I started feeling really bloated, having spasms and sweating… thank God I was not getting that headache. I waited for a while to see if it would go away but it just got worse. By this time I was almost in panic mode and it was about 2 AM so I had to call my mom. We checked the bladder tube and it seemed to be okay so the next step is to check the bowels, as I figured there was a bunch of gas and then I immediately felt better. By the time 4:30 AM came around we were finished and now I get to translate until Teresa gets here at 7… man I hope she’s late. I did take a Xanax so at least I felt really relaxed now.
Saturday of course it was almost impossible to wake up. Teresa came in at 7 AM and I had some coffee but even that didn’t help. She changed my SP tube and checked my bowels but everything seemed to be okay, after a while the chills, the sweats and the spasms stopped. Needless to say I didn’t get out but I slept pretty good all day and hopefully I will be able to sleep through the night. I figured after yesterday both Robby and I could use a day of rest. I’m having a real problem with my Bose surround sound system, every once in a while it just shuts off and I have to wait for somebody to come down and turn it off and on several times to get the sound back. I woke up at 1:00 AM because my phone was ringing, I could see that it was my friend Jerry but I wasn’t really awake enough to answer the phone. I was a little worried but I listen to the message and she sounded like everything was okay.
Sunday was another long personal-care day. I think my body is becoming lactose intolerant. Heather made some mahi tuna and it was so good that I ate it all, that was Friday and probably why I was so bloated… Karen told me this morning that there was cheese on it and I didn’t take my pill. Hopefully I will never forget to do that again. Not only do I need to get up and out of this bed but Robby needs a nice good run, we will do a marathon tomorrow rain or shine. Luckily the days have been going by fast and I’ve been sleeping pretty good during the night’s. I got an e-mail from Roger yesterday wanting to have a meeting next Saturday to try to figure out how we can attract more people to the support group, I am so excited… I hope we can do it.