Clinic Appt.

Tomorrow I have a clinic appointment. It's the normal 2 weeks after you get out of the hospital kind of appointment. We'll probably talk about transplant stuff, insurance stuff, and how much my lung functions suck. Although the word "suck" most likely won't be used by anyone but me. :(
It's all part of the CF game though. On the brightside, this transplant business should be sorted out soon, and then I can go up to UW and meet the team. :) That is going to be amazing! I am so excited about it.

Until tomorrow few blog readers.

L,

Phee

Cca #8: Small things

I think that in life, especially life with a chronic illness, the future is unsure and unpredictable. We hold on to the big moments because they stand out, but it’s not until we’ve been on the mental border of life and death that we start to appreciate life as it is.

Making the decision to get a lung transplant has made me admit a couple of things:

1)  That being that end stage cystic fibrosis is a reality; it’s not just some far off thing that could happen but isn’t happening.  It isn’t the type of thing you can really know until you are kind of close to it.

2)  I’m not invincible.  Even though the odds are mostly in my favor, there could be a premature ending to my story.

Lesson learned!

 I’m living for the present and the future.  I’m appreciating the life I have now, because in a few years I will most likely be living a completely different one.  And I’m learning the importance and significance of the little things in life I tended to overlook before.

I have become a connoisseur of these small things; these moments. I have found they add to your happiness without defining it.  Like having fits of laughter with my family, chasing my nephew around the house, snuggling up to a movie with my boyfriend, or just driving around on a nice day.

Call me a sap, but making the decision to get a lung transplant has left me with the feeling that life, and EVERYTHING in it, is short lived and should be cherished.  When I say short lived I just mean that time is fleeting, and things are always changing.  I have found myself going through these moments in slow motion, and locking them up. I am truly experiencing them; sucking every ounce of them up so I can retain the joy they bring me and use it later.

I think it’s important for us to remember the way life was, and is.  Maybe I sound like a broken record, but remembering everything you’ve done so far (all the fun, all the struggles, the adventures, time spent with family and friends, time being sick, and time being well) gives you the motivation and the strength to make it to the future. Remembering simple times, and simple pleasures, and possibly even the boredom that sometimes accompanies them, makes the daily minutia of life a little more bearable. It reminds us that even when we’re not experiencing light or dark times, there is still life in us.

Living with a chronic illness is a series of highs, lows and coasting, but there are small things in every day, and in every breath that could be cherished and held dear, and that’s what I’m doing. 

How about you?

Love,

Phee

HI!

Hello Everyone,

I have been meaning to start a blog of my own for some time now. Right when I was working on it I was offered to guest blog for the CCA (childrens cancer association) teen blog. It was a 3 month slot of weekly blogs, and I'm almost done with it. :) It has been really fun blogging for them, and I'm so excited about this blog as well.
I can't wait to share things that are more personal, and less general. SO, I'm starting off with some of the blogs I did for CCA and then adding new ones.

Hope that you enjoy reading my blog. I would love any feedback you have to give.

L,

Phee

Cca #7: Patient Manual

Something you don't know is that I was just in the hospital for almost 3 weeks to treat my CF. There are things that I learn from every hospital stay, and sometimes I just learn the same lesson again and again. So I thought I'd share a bit of that with you this week.

This is my formula for being a good patient without being just another body for doctors to put meds into.

1. Be gracious. These people are here to take care of you and help you get better.
2. Ask questions! If you don't understand something in the slightest you need to question it. Ask questions, and get educated. Knowledge is power after all.
3. Trust yourself. You are your own best ally. Knowing yourself and your body is the key to a successful doctor/patient relationship.
4. Make sure you know what your protocol is. You will be surprised how much you don't know about it until you ask someone what it is.
5. This is the one that I have learned too many times to count; Stand your ground. If you don't agree with something, or someone is refusing to accept what you say, repeat until understood. I have had to do this with all sorts of people in the hospital. It's the one that comes up most, and if you don't stand up for yourself and what you think is right, you will definitely feel victimized by the end of a hospital stay.

I want to elaborate more on each of those just so you can get the full idea.

When you are polite and gracious your doctors will like you way more, which definitely makes them more inclined to listen to anything you have to say. And that directly connects with #2, 4, and 5. My mom always tells me "Phoebe you can catch more bees with honey." It is so true!

Understanding your condition and your protocol are required to have any power over your illness. When you understand your illness you will be able to identify things that are happening with your body, and you will understand why you need to be adamant about treating it. Some kids I have seen don't really care what it is, or what needs to be done to treat it, they just go about their lives feeling like victims of something they can't control. Maybe you can't control the illness, but you can control what you are doing to make things worse or better. So ask your questions, be curious about your condition, and treat it accordingly.

Over the 19 or so years that I have been going through my own illness, I have learned a lot about myself. I have learned how my body works, what it likes, and what it doesn't, what it responds to, and how far it can be pushed. I have also learned how much strength it really does take to get through everything I have to. I can honestly say that if I didn't know what I know about myself I would not be here today. It's because I know my body that my doctors are able to treat what they can't see. It's because of #3 that I am who I am.

In my experience the best thing I have ever done is stick up for myself, and my rights as a patient. There are lots of people on your case, and sometimes they do not coordinate with each other. You will probably have to repeat most of what you say over and over again. So make sure your story is straight, and you state what you think. It is not fun to be patient road kill. Believe me when I say that if you are not being your own advocate and standing your ground you will get steam rolled.

All of the things I have listed in this blog tie together in some way. So keep it all in mind when doing anything with medical professionals, and you will for sure make it out a happier patient. We are not just fighting for our lives, we are fighting for the best care, and if we can't act accordingly than we most likely won't get it.

Love,

Phoebe