Getting home with the help of Justin Timberlake

I know a totally corny title....you'll see why soon. I'm not even really that big of a fan....haha....

Yesterday I finally made it home. After 29 days, plus those 14 days that I did the first time around. Somehow it feels like forever ago, yet it went by quickly. Sleeping in my bed last night was hard for me believe it or not. It felt alien, but I did fall asleep quite fast and slept until 9am, which I have not done in ages. I certainly feel more relaxed this morning, as yesterday I was very anxious and had a hard time relaxing.

I am not on IV's at the moment, which is also quite a nice thing, but I think is the reason behind the anxiety. It seems like when I am on IV's I am more stable and have no surprises. I don't wake up with a heavy chest, coughing fits, and fevers. Generally on IV's I feel good, though my lung function does not change much, but as least I feel ok. I do not look forward to no IV's since I tend to anticipate when I will get worse. Hopefully this time I will have a few weeks or even months without having to go on IV antibiotics. Fingers crossed.

The tx assessment is moving forward. I am waiting for TGH to contact me with the actual appointment date, and I have been calling them to get that date sooner. Hopefully we will know very soon. It will make me feel good to have that date set. So we wait.

Part of the pleasure of being home is being closer to the nursery and being able to go up there and sit and look. Our little girl is collecting some outfits already from friends and family that are sending things. It's so great. There are some pretty cute outfits that she's going to have to grow into. A few are the teeny tiny ones that I know will last for only a short time, but they are my favourites. We will have to choose which one she comes home in. The nursery itself looks awesome. Like a different room. All the big things are there and waiting to be fluffed up and prettied up with the accessories. The blinds and bedding are being made as we speak, and will soon arrive. I can't wait to add those little elements that will soften the space up. I can't wait to show you guys, but I think I'll wait until it's all put together, for the full effect!

I am coping with all this change not as well as I am used to. Meaning that I have been able to, all my life cope quite well with changes in my health and my limitations. May be because this is the final limitation, the final step before I am free of this disease in my lungs. May be that's the reason why I am having these moments of stress and anxiety. Having the oxygen at home, has also added to that feeling. It's not ideal for our home. We live in a very large house, and the tubing and compressors are just not enough, so we have to see what we can do for that. It's a pain, and dealing with these companies is not easy. In this condition living in a small condo would be ideal. Everything close by, and easy for me to get to. But, I know that it is temporary. Not forever, though it will be a year or year and a half, and that causes me to really get frustrated. Somehow, I still wake up every morning and think this was all a bad dream, and I am able to get out of bed without getting caught on my oxygen tubing. I feel like I have lost something, and in some way I feel like I am sad for what I had lost. I try to think of all that's coming, the gifts that I will get. The baby that will be with us soon. She is the greatest gift. Then the gift of life that I will receive due to someone else's great loss and their insight and generosity as well as the grace of their loved ones. So I understand that I should look forward, that I should not concentrate on this time now not being so comfortable. It is par for the course.....this is the world of a patient pre transplant. I know this. Somehow this does not make the sense of loss go away.

There is a song that I really like, by Justin Timberlake, that I never listened to closely enough to get the lyrics. I just thought it was a great song. Recently I actually heard the lyrics, and it caught me off guard that this is how I feel right now:

"I've been travelling on this road too long
Just trying to find my way back home
But the old me is dead and gone
Dead and gone"

A long road that I have been down, the road of CF. As it reaches the end, I do feel that it has taken with it the old me. And that part of me is dead and it is gone, and now with tx coming, I am trying to find my way back to whom I was and who I am meant to be. Like the old me, but better. The rest of the lyrics, I looked up and they are totally weird and have nothing to do with anything I can relate to.....such as....well you can look them up on your own, I won't write them here thank you! Somehow though, those lyrics above, the chorus, made sense to me, even though I don't look at Justin Timberlake as my spiritual guide....haha.

So, now we wait and see how the days go. We are waiting for TGH to call and set that assessment date. We are waiting for baby girl to come home to us. And we are waiting for my lungs to come. Well, let me correct myself, those lungs that someone will let me use. That person that we will owe my life to. I think about that person all the time, without me knowing whom I am thinking of, and without that person ever knowing what impact they will have on me. It is bittersweet isn't it?