I'm deciding what I want in life. I am figuring out what is most important in life. I am figuring out how to maintain my current good health and trying to decide what to do with it - with all the extra energy and time.
I know, this could be a big, important post. Or it could be a short little one with some goals. I'm leaning towards the 2nd option because I need a nap, but I've got some very important, mind-blowing ideas rattling in my head and I want to get them out there.
I want to keep babysitting.
I want to be a better dancer.
I want to enjoy my life and have plenty of time for family and friends.
I want to have time for my mindless TV and crafts.
I want to be out there speaking about cystic fibrosis. I want to speak at CF Foundation events.
It's that last goal I want to talk about today. I am different. I'm different from many CF patients. I am compliant to a point - if it's not working for me, I won't do it. I do what works. I work hard to find what works and then I stick with it. I work hard to figure out how to be as healthy as possible with all the added things I have on top of CF, and then I work hard to maintain that health. If it means not doing everything a doctor or a nurse tells me I should be doing, that's okay with me.
I know my body best - I've had CF for almost 24 years now. I know what's going on inside me and what is working. A doctor who has only known me a few years doesn't know my body as well as I do. Currently I go to clinic and see a CF doc who has known me for a year. I love my new doc because she listens to me - and that is most important in a doctor. They need to listen to you and get to know you as a person. I miss my peds doc who I saw for 17 years. He knew me - we'd probably fight now because I'm so head-strong, but I miss him. The point is, after I transitioned to adult CF clinic, I tried doctor after doctor to find one who would listen to me. I ended up driving more than an hour to a different clinic to find a doctor who fits me and who will work with me. I found what I needed.
That makes me different. It probably makes me someone the CF Foundation wouldn't want speaking at events. I don't do hours of treatments each day - I do a 1/2 hour. I take all my pills. And every other week I do Mannitol (yes, I'm still working on THAT post). This is what is keeping me healthy - this, and my active lifestyle. And by active I mean I babysit, I dance occasionally, and I work on my crafts and keep up with my life. I hang out with friends and I do chores. Many of these things I couldn't do a year ago. One year ago I was spending my time waiting to do IVs, doing IVs, and then waiting to do IVs.
Which brings me to another point.
Happiness. I found it.
I am so happy I barely understand it. I also have a hard time understanding why all the 'healthy' people aren't as happy as I am. It's because I never expected to be healthy. I didn't even dream about one day being this healthy because in my mind it was an impossible. I knew I was doing round after round after round of IVs, and going to slowly decline until I was at the point where I needed to be evaluated for a lung transplant. That was the reality I had accepted. And I was determined to make that reality fun and happy - and I did. I traveled to Europe, San Fransisco, and New Orleans. I made sure I saw my friends as often as possible because I knew I wouldn't always have the energy to go somewhere and hang out. With what little energy I had left I would slowly work on craft projects. And that made me happy.
So when I found Mannitol (STORY TO COME SOON!), I couldn't believe how healthy I felt. I didn't think it would last. And now that it's lasting and looks like it might last a long time, I'm ridiculously happy with everything I do. Dancing more makes me giggle and when I babysit I can't stop smiling when I chase after the kids. Even crying kids make me happy because I have the energy to deal with them. I love reading books to the kids because I have the breath to say long sentences without pausing. And it makes me laugh.
I have the energy to be the silly person I am inside. I am the social person I wanted to be when I was sick. I can do the laundry - and it makes me so happy I call my mom just so I can cheer and have someone cheer with me.
And this is why I feel I am a happier person than most people I encounter. I am living a life I never dreamed of having - and it's better than any dream I've ever had. Now I'm dreaming about my future and what it might hold - and my dreams aren't just about a short wait for transplant and few complications after. I used to dream that I would wake up from transplant with almost no complications and be walking the same day - THAT was my ultimate dream. Now my ultimate dreams include finishing college, having hobbies and a career, and dare I mention it - a family.
A. FAMILY. Like, with kids living in my house. I haven't dreamed about having children since I was little. Since before I knew how hard a pregnancy could be on a body and before I knew how hard it is for CF women to conceive. Don't get me wrong - I'm not dreaming of biological children. I'm dreaming of adopted children and a full-time nanny to help me because I still don't have the energy of a 'normal' person and I need more sleep than average. So it's a little bit different dream - but it exists in the back of my mind, and that's a little scary.
So right now I'm sticking to dreaming for the next couple months. I'm dreaming of a completed quilt, an organized house, a fun party to celebrate one year of amazing health, and a successful trip to Seattle in September. And that's more than I could dream about last summer - which makes me so happy.
Excuse the dust, my inability to be polite showed up - Last week the girls an I visited Disneyland to celebrate Marlo’s ninth birthday (this whole thing happened NINE YEARS AGO) and yes, while I was very busy s...
2 days ago