Wednesday, November 23, 2011

Where's the Energizer Bunny When You Need Him

This week we have Thanksgiving to look forward to. As I am writing this, I'm looking forward to the Thanksgiving Feed my Bible study is having Tuesday. Pretty excited since it means I get an extra day of eating.

My doctor appointment went fairly well. My weight is slowly creeping up. No change in lung function, but using the oxygen while I exercise seems to help me with the gaspiness (They call it shortness of breath or SOB). The doctor says the exercise will help keep my heart and muscles strong. So that seems to be the goal. Try to keep everything else in working condition while my lungs go down the drain.

He did say that some CFers last quite awhile where I'm at now. I told him it wasn't a problem of "lasting". It's has to do with my quality of life. I'm very adaptive, so while I can't run or swim, I keep my mind busy and I'm okay. But what happens when I can't keep my mind occupied? And besides, it's pretty depressing sitting around and watching everyone else doing all the things you used to enjoy. I did say that if I hit a point where I can no longer eat, I'm calling it quits. Food is more than nurishment to me. It's an experience. And taking that away would make me completely miserable.

On a happier note, my niece visited this weekend. Since it was way too cold outside (cold air gives me severe coughing spells), we stayed in and had a picnic on the living room floor. She really seemed to enjoy it. Then we put on aprons (my grandmother made my mother and me these cute aprons out of Hawiian style fabric). I took pictures of my niece wearing my mom's apron. It was too cute. Then we baked chocolate chocolate chip cookies. She had fun with all the mixing. The hard part was not letting her eat the raw cookie dough. Children don't understand why they can't just lick the bowl. Besides the health reasons, I didn't want her having a sugar high with no outlet for the energy. The cookies turned out great. My mom took my niece to deliver the cookies to nearby relatives. She was pretty thrilled.

When they returned my niece donned on the apron again and helped my mom make dinner. She enjoys putting all the spices in.

After my niece had returned home, I was pretty worn out. I don't have much energy to begin with and she seems to take all I have. I love having her over though. It's just that with kids this age, you have to change up activities every 15 minutes or they get bored and start getting into trouble. Fifteen minutes is about the max for their attention spans. I have learned to divide big tasks into several little tasks and with that I can keep her busy longer.

I do envy her energy. I miss the days where I could just go, go, go. I miss singing without getting light headed.

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Saturday, November 12, 2011

November Update

I know it's been a while since my last post. Things have been chaotic. Lost a family member at the beginning of October. His memorial was at the end of October. We are now trying to get back to our lives. The world doesn't stop just because you lose someone, but how do you pick back up? You can't pretend that person never existed. And you can't curl up into a ball letting the world pass you by. I would think that the best way to honour a loved one is to live the best life possible that you can.

I have been using the oxygen for about a month now. I get to do a lot more activities. So that's good. I miss swimming though. Since my sats only go down when I'm active, that's the only time I have to use the oxygen. I don't need it for sitting at home. I see the doctor on Monday to tell him how I've been doing with the oxygen. I also have to talk to him about my shakes. I've been slowly putting on weight which is great, but I received a letter from my insurance saying that they weren't going to pay for my shakes anymore. I can't afford the shakes on my own and I can't afford to be losing weight. So I need to know what to do next. Insurances never make things easy on you.

I had an appointment at the transplant center. It was short. I had let the social worker know about my stepdad's passing. She was surprised I had shown up to my appointment. I explained that in my experience when a doctor cancels on you, you get a new appointment within a week. But when you cancel on a doctor, you're lucky to get an appointment within two months. There was no way I was going to cancel. She seemed to understand. She notified the rest of the team about what had happened. That's the nicest those doctors have ever been to me. It even shocked my mom.

Halloween marked my Holiday Kick Off. For me, it means pouring through cookbooks and drooling over various recipes. I love food and I love preparing it. The idea of experimenting with a new dish makes me excited. I look forward to sharing my experiments with family and friends. Luckily, they seem to enjoy being my guinea pigs.

As far as the holidays go, I am getting booked. My dad is visiting the first week of December. I'm excited. Trying to find things to do that week. And I get to see my cousins. My Bible study group is having a Thanksgiving dinner this month and next month we have our Christmas party. These two months will be bittersweet since I'll be bumped to next next Bible study group at the first of the year (I'm getting too old for this one :o) It also means I'll be handing over the reigns to movie night to someone else. Not sure who yet. But I am looking forward to the next two months. I'm hoping to end the year with a bang.

For transplant related post please click here.