Tuesday, July 30, 2013
To All You Anonymous Donators Out There!
Who has questions?
Swim
To fall off the earth"
Daily Routine
- Clumsily stumble out of bed at
7:30 AM to disconnect from nightly feeding tube. Cough for 15
minutes and go back to sleep.
- Wake up for good at 11 - 11:30
am. Cough and blow nose for 30 minutes. Hug my doggies.
- 11:45 - 1:00 - Prepare and
eat breakfast. Do nasal wash and take morning medications. Give
Chloe her medicine.
- 1:00 - 2:30 - Do first therapy
and while doing so, multi-task: check my email, read a book, read CF
forums, or write a blog.
- 2:30 - 3:30 - Prepare and eat
lunch.
- 3:30 - 5:30 - Exercise at the hospital
gym (M-W-F), otherwise do light chores, water the plants, see a movie, get
some sunshine!
- 5:30 - 6:30 - Recharge my
batteries and rest or do another treatment.
- 6:30 - 8:00 - Prepare dinner
and eat.
- 8:00 - 9:00 - Spend time with
Joe.
- 9:00 - 11:00 - Treatment again.
I do my vest therapy for 30 minutes and my Mom comes over nightly to do an
extra hour of manual chest therapy (basically beats the mucus out of me).
- 11:00 - 11:30 - Get ready for
bed....take medications, hook up to feeding tube, cough, get comfortable
and sleeeeep!!!!
Joy In Making Others Happy
Things I Look Forward To Doing After Transplant
- Taking a good, long deep breath
without coughing
- Taking the dogs to the dog park
or on a hike
- Dancing
- Singing
- Hosting family gatherings and
cooking all of the food
- Traveling
- Skiing and sledding
- First camping trip
- Bike riding (although Joe found
a good alternative today! see photo)
- Moving into a house with a yard
- Baking and cooking
- Volunteering
- Keeping up with my hubby!
Monday, October 24, 2011
Anger
I am angry at the world today. It has been an unusually tough week, but today just seems like the tipping point. I want to just blow up and unfortunately, it is my husband who is the only human here for me to yell at. I have managed to avoid yelling at him so far, but I need an outlet and I need it quick. I already tried one thing: I went over to him and I told him to just ignore my nasty look for a few seconds. So, I then proceeded to give him a dirty look and run all of my angry thoughts through my head in rapid speed, hoping that if I just thought them and not said them, that it would make me feel better. It didn’t.
I am now up here blogging, still trying to figure out WHY I am mad, hoping this will relieve my stress. I think it’s a lot of things. This week was already difficult due to finding out my LAS score was increased to the point that I could expect a call for transplant any day (Read more here). I wasn’t really thinking about transplant that much, but this magic number of 40 just all of a sudden made it so real for me.
Second, Joe hurt his hand during a camping trip (Read more here) this weekend. I am angry at the situation of course, I am NOT directly angry at Joe – accidents happen. I am just angry because I didn’t really want him to go on this trip in the first place, and if he wouldn’t have gone, he wouldn’t be injured. He is now limited in some of the ways that he’s been helping me (including ability to do hand treatments) and it just isn’t the right time for this at all, especially because I may be called for transplant. I KNOW he’s really upset about it too, so I have not given him a hard time at all about it, because that is the last thing he needs. I want to be supportive while he heals, but right now I am just so angry about the situation, I want to scream. SO I AM SCREAMING RIGHT NOW!!!!! I am totally holding in all this emotion right now and it’s putting me in a really bad state of mind.
Third, I am mad at myself for being lax these past two weeks about getting my butt to rehab. I only went once last week and it was realllllllly hard for me to get there today. I’ve just been so depressed these past two weeks, but I know in my heart that I will feel better after I work out, so I just need to get back into it.
I have just been on such a streak of positive-ness, that I suppose a funk was bound to happen, especially with these events occurring all in the same week. I just need to find a way to vent, let it out and get positive again without taking it out on my spouse. That certainly won’t make anything better. I feel a little better now that I typed all of this out. Hopefully a good night’s sleep and good news tomorrow for Joe’s hand surgery (positive thought!) will turn my frown upside down.
