Today I woke up with a migraine. It wasn’t the worst migraine I’ve ever had but it was a bit worse than my normal ones. The throbbing in my head was made worse by the fact that our house has blinds that do nothing to block out the light. As well, the cats decided that they needed to be very vocal today.
I was suppose to go out to brunch with Sweety, his sisters and his father but, needless to say, moving was not an option for me this morning. In fact, I don’t even feel so hot moving now and my migraine has lessened from its intensity.
I have a theory on why I had a migraine today. Part of it is due to the fact that I had a very bad “episode” last night. It was as if I couldn’t turn off my brain and all I could think about was everything that I needed to get done and how I’m doing a really bad job of taking care of Sweety.
In a way I almost feel as if I deserve my migraine. Partly because Sweety and I are just getting by and partly because there is so much more that I could be doing but I’m not.
I know that I’m doing all I can at the moment, but today is just one of those days when I can’t convince myself that that’s enough.
Today I feel like crying. I feel like I am the only one who actually cares about Sweety and, because of this, I feel frustrated. There are multiple reasons why I feel like this and I will attempt to explain it.
Earlier today Sweety got a call from his mom just as he was stepping into the bathroom. He told his mom that he would call her back when he was done but she ignored him and tried to keep him on the phone. This in itself baffles me as he told her that he couldn’t speak right then but he would call her when he could.
Then, I received a text from her which asked me if Sweety’s uncle was there yet. I asked Sweety why he didn’t tell me his uncle was visiting and he was confused. So I replied to the text asking what she was talking about and that we weren’t told anyone was coming over so we weren’t prepared for it. The reply I got was hostile in nature and laid the blame on Sweety for not telling her that we didn’t want visitors. When I asked her if specifically told Sweety that someone was coming to visit, she replied saying that she couldn’t talk because she was working.
I wish I could say that I was surprised with that texting conversation but it is typical of Sweety’s mother. Unfortunately, Sweety’s family tends to think of themselves first and others last. This can be seen in the fact that his father spends all of his money on alcohol and then proceeds to ask family members for money. The fact that, despite being told that Sweety has no immune system and shouldn’t be around children, his sister brought her 1-year old to visit. The fact that his mother assumes we are on her schedule by telling us when she is visiting and then showing up several hours late.
The way I was raised was for families to lift each other up rather than to be tossed aside when convenient. And, as Sweety’s family is our only possible support system on this side of the country, I feel very much alone. I call my parents every few days and speak to my sister every so often. Even my nephews who aren’t in school yet are a better support system than Sweety’s family.
I know that I really have no room to complain because at least I have my family to support me emotionally. But, at times like this, I really need someone to hold me while I cry. Unfortunately, the only one who can do that is Sweety and I don’t want to add anything to his already large load.
As much as I am grateful for all of the help that Sweety and I are getting from the government in terms of finances, I am frustrated with how difficult the last week has been.
Sweety gets disability from the government because of his transplant. This is great because the disability allows us to pay our rent and a few of our bills while still letting me be Sweety’s 24 hour caregiver. Unfortunately I am not from the area and moved here when Sweety got sick so I am unable to get any financial aid. Therefore, all of our financial aid is under Sweety’s name.
Over the last week, we found out that the government switched Sweety’s file from one city to another. We also found out that the files were sent incomplete and that we need to resend everything.
While this doesn’t seem like a lot to do, I am unable to do any of it. Because everything is under Sweety’s name, they only want to speak with Sweety. This wouldn’t be a bad thing except that Sweety has been having a bad week and this is just extra stress for him.
I just wish that they would speak with me. It’s not like Sweety hasn’t given them oral and written permission to speak with me because we made sure that it was there in the files from the very beginning. Though, they may have lost that when they misplaced all the files in the switch-over.
Anyone have to go through this before? Do you have any tips for dealing with the Government?
I know the title of this post seems weird. For anyone who hasn’t heard of Scandishakes, you are seriously missing out. They are the weight gain wonder drink.
Sweety loves them and it is the only high calorie drink that I can get into him without a fight.
We first heard of Scandishakes through my Dad’s doctor. My dad had cancer in his tonsils two years ago and had intensive radiation and chemo in order to get rid of it. Unfortunately the treatment was horrible for Dad’s taste buds and being able to eat food. Dad ended up losing a lot of weight and it took him a year to get the weight back on. That is where the Scandishakes came in. Mom would mix a spoonful of the Scandishake powder in with an Ensure and it would take Dad all day to drink it. But the Scandishake added extra calories to an already high calorie beverage.
When we were told that Sweety had lost weight last week, I immediately thought of Scandishake. The dietician agreed that the shakes would help but she had some bad news for us. Apparently the hospital was having trouble getting Scandishakes in because they had changed their formula.
Luckily we had been in the pharmacy the other day when they were restocking their Scandishakes so we were able to pick up a few packages. But if I wasn’t already familiar with Scandishakes then I wouldn’t have even noticed that the pharmacy had them.
I suppose that’s all I have to say about Scandishakes for now. Enjoy the picture and if you need to gain weight, ask your doctor or dietician about Scandishakes because they are wonderful.
Yesterday I didn’t post because I felt sick. Normally I feel slightly sick if I haven’t eaten but yesterday was the exception to the rule.
Unfortunately, Sweety also felt sick so we are unsure if it was just that the food we had eaten the day before was not agreeing with us or if we were actually sick. We are both feeling better today though Sweety’s stomach is still tender and not allowing him to eat much. I am still holding out hope that it was the food as it came and went quickly.
Luckily we were both able to keep down food yesterday which means that Sweety was only out for one day of high calories.
It also hit Sweety how much weight he lost yesterday. He saw himself at a strange angle in the mirror. Of course, he lost 25lbs throughout treatment and he wasn’t very big to begin with. To put it another way, Sweety weighs the same as me and is over one foot taller. It’s actually quite scary because you can see his ribs and spine when he takes off his shirt.
Fortunately the dietitian has given us a weight gain plan. Sweety needs to have at least two boost/ensure shakes a day. If he is good, then he can switch one of the boosts for a Scandishake which tastes exactly like a milkshake. Well, I assume it tastes like a milkshake as that’s what Sweety has told me. Maybe I’ll sneak one someday and know for sure.
Anyway, that is all that has happened over the last few days.
So yesterday when I was talking to my mother she gave me a idea to help keep myself cool. She told me to soak a cloth in cold water and put that on my forehead just like I would when I have a fever or a migraine. She also said that it might work on the neck or on the wrists; basically the pulse points of the body.
I was a bit skeptical at first because I didn’t want to cause a shock to my system by drastically cooling parts of my body. But I tried it today and I have to say that my mother is a genius. It was an instant cool off that spread through my entire body but it wasn’t so cold that I couldn’t handle it.
Unfortunately the cloth heated up fairly quickly due to the temperature of the air and my body. I had to replenish the cloth’s coolness within a few minutes of using it. I did that by putting it in the fridge for a few minutes.
I also gave Sweety a cold cloth because the heat is really getting to him. Sweety has been living in as little clothing as possible and he is still overheated. I guess I shouldn’t really be surprised at this as the temperature today was over 40°C with the humidity (36°C without).
We’ve been keeping the fans on and the windows open overnight as it does cool down. Unfortunately this means that the only real reprieve we get from the heat is in the morning.
I hope that this heat doesn’t last too long because it is not fun dealing with it or watching Sweety suffer from it.
If you are having trouble with the heat then check out these links: