Friday, July 2, 2010

Life, or The Post Before THE POST

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.

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