Saturday, January 18, 2014

Saturday Six 1/18/14

I'm going to start doing the Saturday six every week so that if I don't update my blog for whatever reason (like I've been doing very bad at lately) you will at least get a weekly summary of how things are going in my world. The first point will always be that weeks medical appointment summary, then the other 5 facts will be random. Then there will be an inspirational quote at the end, just for fun. :)

So here's this weeks Saturday 6:

1: Medical stuff:

  • 1 day of PT worked on core, leg, and ankle strengthening stuff. Wore me out as usual.
  • 1 neurology appointment made some good headway on cutting out one med to crush that was crushed 3 times a day by replacing it with a 24 hour patch. The patch is causing lots of itching though. Added creatine to my mito cocktail to help with muscle weakness, it's not here yet, don't know if it will help yet.
  • Had to cancel my saline infusion because my energy level was just way too low and I didn't feel well so couldn't get there, plus it was snowing and I didn't want to drive in the snow...again.
2. School is back in almost the full swing of things. One of my classes is at least. The other one is trying to pretend it is, but it's just frustrating me because she's telling me we will have to do 2 research projects for that class and write a grant but not giving us any information in how to do it. The other class is a research project as well. Plus, I'm working on my thesis. So that's a whole lot of research for a normal kid, let alone a sick kid. So I need to have information so I can be planning appropriately. So far I've got 2 topics planned one for research, one for one of the 2 public health papers. The research class I'm doing a paper on the patient perspective of quality of life of living long term on home enteral nutrition (tube feeding) to educate dietitians about why it is a big deal. For the first public health paper I am doing nutrition prevention and intervention strategies for osteoporosis. 

3. My car wouldn't start on Sunday and I had already had plans to get the back window fixed on it Tuesday. By the time all was said and done it cost me $630 bucks to get it out this week and they found $155 more wrong with it that I have to wait to fix until I get some more money. Talk about a hit to the pocketbook. I'm glad that it is a good car and that I don't have payments on it.

4. The weather is really starting to affect me I think. And I'm really, really, really tired of snow. Snow causes me panic attacks and I can't keep driving in it. I can't keep cancelling my appointments because of the snow, but my body gives out when I drive in it. The snow needs to go away now.

5. On that note, I really don't know what's wrong with me but I am having a really hard time staying awake lately. Little tasks are becoming very hard for me to do. My muscle weakness is getting a lot worse. My fatigue is getting a lot worse. My cognitive abilities are getting a lot worse. My dysautonomia symptoms are getting a lot worse. Nothing is really getting better and it's kind of starting to worry me. But not enough to freak out. Yet. 

6. Carolina graduated from the first level of her dog training classes this past Sunday. Only 2 more levels to go before she is one highly trained dog! I'm so stoked for her.

1 comment:

  1. I've been reading your blog for a while now but have never commented before. I love your positive approach to how you deal with you health problems. I have nominated you for a Liebster Award. If you choose to accept the nomination, the details of the award are here: