Yesterday I wasn’t doing very well and I was in a terrible amount of pain. Normally I would be able to push the button on my IV pain meds and then I would feel a little bit better. When I push that button it gives me a whole hours worth of pain meds all at once. I know that I have a nurse coming this morning to set up a new IV bag so I figured I would just wait for her to come and tell her that my pain button wasn’t working for the extra pain meds. I guess it was about 9pm last night when everything on my IV meds quit working at all. The only pain meds that I take are in that bag so I hadn’t been getting pain meds for hours before I knew what was happening and I had to call my nurse late last night to ask her to come to my house right away and fix it. She was yawning when I was telling her on the phone what was happening, but she came right over.
I told her that I was really sorry that I had called her at home after she had worked all day but she made me feel better about calling her. I like my nurse…she understands what the pain can do to people. She ended up having to take the needle out of my port and insert a new needle and luckily the new one flushed perfectly. I was in so much pain by the time that she had it working right again that I actually felt the pain meds go into my body, normally I wouldn’t feel the pain meds at all. I asked her why that would happen and she said that I was moving around too much. I hardly do anything at all and now just taking a bath is a big deal. I don’t know how I can do less that I already do.I think I’ll spend my time watching a movie this morning so I don’t try to clean anything because I know I’ll hurt myself if I do. I do have a box of M&Ms and a pot of fresh coffee to comfort me.
My best friend Daine was here for days doing dishes and cleaning my floors so I think that just watching her do all the work that she did was what hurt me. I did probably do one or two things without realizing I was doing anything at all because she was doing so much. I don’t know how she has put up with me for twenty seven years (I think), but she’s the only reason that my house looks as good as it does. Thank you Daine! I hope you’re coming back soon, but for visiting or watching a movie or something.
My take on life is most likely not what everyone else sees. Things that used to be very important to me are way back in the background, and different things are up front now. First lets take my morning routine. I wake up a little later now than I used to because I get up every few hours throughout the night. After each four-hour ‘nap’ I try to do one or two things that I would have before waited for the afternoon to get working on. Then there’s sleep its self. I have to take pills for this that and the other(right now I have pneumonia again) that usually makes me a little sleepy so the four-hour sleep thing actually works out fine. I would have thought that only sleeping in four-hour intervals would make me tired all the time, but it gives me a little bit of time after each four hours to do a few things. This morning I woke up and had a cup of coffee and read a few pages of my book and decided that I might have enough energy left to knock out a quick post.
I know I’ll have to write it quickly because I’m already getting tired, hopefully the coffee will help with that so that I can stay up a while longer. I have my M&Ms too so one more cup of coffee and I’ll be fine . I have a friend who I haven’t seen in a few months that showed up a few days ago and wanted to know if it was all right if she came to stay with me for a while to help with all of the housework and to keep me company. It’s nice to have people come over to see what they can do to help us out. We need help all the time so we have friends coming and going throughout the days. Some just come to keep me company and those are the ones who can’t help with any other needs. I think that kind of help is so precious. I’m not one who normally likes to have a lot of people around the house because I’m embarrassed that my house isn’t always clean anymore. That doesn’t seem important these days. I told her that she’s welcome to come and help out for a while. She should be here sometime today.
Then we have the bills. I can’t ever find the words to convey how embarrassing it is to have to admit that we can’t make ends meet anymore. I’ve always hated having to admit that we need help but I’m putting my pride away and asking for help in different ways. First we just signed up for state services for food and health insurance for Rick, he needs to be able to keep taking care of his heart. He went for over a week without taking his heart pills and never told me because he knew we had no way to come up with enough money to pay for his meds. We now have decided that we can’t just go without some things.
I’m setting up a way for people to help us financially if they want to. I think Elaine is working on a way for people to help in different ways. Some want to mail a check and some want to pay bills directly, and some just want to send cash or a money order. Elaine will make sure that if you want to help financially then it will be excepted in whatever form you wish. I think that letting people send us money is right up there at the top of embarrassing/humiliating. I’ve come to accept that it’s alright for me to say when we need help, and boy do we need help! Like I’ve said before we have helped so many other families when we were able to over the years and I wish I knew how hard it was for the people we were helping. I always just figured that they were happy to have some financial relief and that was the end of it. Well, that is so not the end of it. I remember feeling so happy about giving people whatever they needed, but I think that now its my time to learn how other people feel about having to except charity. Thank God we’ve never had or used credit cards, I don’t like to make payments on things, so if we didn’t have the cash to purchase anything we just saved up for things.
I think that I missed this entire Christmas season because I did everything but hide in my bed to stay away from people. I wanted my family to have a good time, but I think that I could have helped to make it a better holiday, even without any money. I know that my mood swings are coming from all the meds and the pain I’m going through. I’m so used to having a lot of pain but this is way more than what I’ve ever had to deal with…and it’s only going to get worse. I did finally get my mother to agree to take me to make my final arrangements while I’m able to have a say in everything. Of course I have a long time to go yet but I didn’t want to wait until I can’t go with the family to choose what I want. Rick and mom need to make theirs as well. I don’t think that anyone should wait until their too sick to go and have a say in their own final wishes.
I might think about things differently now but it’s only because I don’t want all the difficult things left for other people to take care of. My muscles are all very stiff when I wake up…every time I wake up, but then it gets a little better as I get up and move around a little bit. I get very excited when I’m able to finish any chore on my own, and I make sure that everyone in the house at the time knows that I accomplished something on my own. Here is a recent pic that was taken just hours before my sister Elaine left to go back go back to NC.:
I’ll cut right to the chase. The sky is blue. The sun is really a star. The moon was full last week. Dogs like to jump and give wet kisses. Bicycles have two wheels -I prefer cars, they have four wheels and protect you more during inclement weather. Yes, I’m still in a great mood!
Oh my! I got off track, so sorry! Jess was discharged late this morning 🙂 I haven’t been able to talk to either Cindy or Jess yet, but I texted Rick after I called the Presidential Suite and the phone just rang and rang and rang. Rick said Jess’d been discharged & they were running errands -which I hope consisted of getting her meds & Ensure drinks and perhaps puddings & Icees. Then Justin called and wanted to talk with Cindy. So, after all that, I’m guessing exhaustion hit and hit hard!
Cindy was beginning to sound tired again last night as Jess began to be able to drink the Strawberry Ensure. Then Jess had almost finished an Icee! The really nice nurse came in & stated that Jess looked better and Cindy said she agreed. The difference from yesterday afternoon to evening was dramatic -in a fantastic way! I had not anticipated it being so great, but sometimes, when doctors/nurses listen & hear what a parent tells them about their child, sometimes things turn around. This was one of those times. Chalk another one up for Moms!!
Well, I guess I’ll go on and publish this so you all can rest easy knowing Jess is much better & both are safely home in their snuggle-ly beds. Tomorrow we’ll check in and see how Cindy’s doing now that she doesn’t have to be Super-Mom. I want to be confident she’ll be alright after a day or so. However, my confidence may not be based in reality … but I can still hope! There’s ~always~ hope!
Good Night All!
Now it’s time for everyone to get a nice massage. Yes, seriously! Schedule one ASAP =0)
I decided yesterday morning while I was drinking my coffee that I needed to get some exercise in to get my blood pumping like I was told to do by the Dr at the hospital. I do love going around the neighborhood in my wheelchair with Rick walking next to me but Rick had some errands to run and I was here all by myself. I don’t ever go out alone just in case anything happens or I start feeling bad. So I thought that it would be a good idea to find things to do around the house, and since I had been in the hospital all last week my kitchen wasn’t exactly as clean as I thought it should be, so that’s where I started. I think every dish we own was dirty and when Rick cleans the kitchen he always only fills the dishwasher and forgets about the stove and the counters. I washed every dish by hand and dried and put them all away and did my best to get everything else in the kitchen cleaned as well. I think I ended up spending about two hours just in the kitchen alone and was very disappointed in myself for not having enough energy to sweep and mop my floors. My daughter had her favorite little man (four years old) here for a few days and she had to go to work so I agreed to watch him until Rick came home to take care of him, but Rick ended up having to be out until it was bed time so I never did get anymore work done. I think I probably shouldn’t have done anymore than I did anyway because after sitting down for a few minutes I realized that I was completely wiped out. Luckily little man was very well-behaved for me so watching him wasn’t a problem at all. I went to get ready for bed as soon as Rick came to take over and right after he walked in the door he told me that he had agreed to also watch our niece for the night so that my sister could go to the er to have an x-ray of her ankle. So just as I was getting ready to fall asleep Rick laid down with the kids to watch a movie to help them go to sleep and I didn’t hear another thing all night. When I woke up this morning I had a house full of people…my daughter had two friends sleeping here, my sister and her boyfriend were asleep with my niece in the guest room, and little man and Jesse were asleep in her room. There were people everywhere, but thank God there wasn’t very much noise. I woke up the last of the sleeping teenagers on my couches and told everyone to find something to eat and get moving so I could have my house to myself again so that I could try again to get my house cleaned. They didn’t make much of a mess so I just have to work on the floors and dust. Hopefully I can get it all finished today before I get too tired. I also was told that while I was sleeping that the police had to come in my house looking for a guy that was running from them and they had their guns drawn while searching my house. Come to find out the guy had jumped my back wall and went over the neighbors wall and they found him in a third neighbor’s back yard. I never heard a thing. I might have been bothered that there were cops in my house with their guns out looking for a criminal, but because Rick and I had to talk to the police all the time when we were doing repos we pretty much know all the cops in this area. Rick told me that one of the officers stopped to talk to him for a few minutes to ask if we had any tow chains left over that he could use for weight lifting. I’m still in a good mood today and Rick and I are here all alone again…just how I like it. I’m going straight to get my broom and mop and see how far I get today. I’m still not feeling my best but I’m willing to do as much as my body will let me do. I noticed this morning that all three of my bath rooms need to be cleaned too. I think I need a maid, but I can’t find one that will work for free…and I do need the exercise. I feel so much better when I’m able to get some of my cleaning done. Things just seem to be getting back to normal around here and every conversation doesn’t revolve around my cancer. That’s really a welcome change. I’m so ready for another vacation.