March Update

A lot has been going on since my last post. I still don't have internet at home, which makes blogging difficult. I had another appointment at Stanford and one at UCD. I spent a few days in the hospital. Plus I've been trying to do more outside my home (been getting stir crazy).

The appointment at Stanford went okay. Still not sick enough to be listed. All this waiting can get aggravating. Personally, I don't want to get worse than I am now. But rules are rules.

My UCD appointment went well. No change in health. Still trying to get the weight on. And some days I feel totally exhausted when I've done nothing. I found that riding the quad helps bring more gunk up so my doctor recommended I do that at least twice a week. So I've been making a point of taking it out. My dog likes it too, since he gets to go running. I did complain to my doctor about this whole waiting thing. It's frustrating. I finished school got my degree and now I can't use it because I can't work and stay healthy. He suggested I find some volunteer stuff to do. I would only have to put a couple of hours a week in and wouldn't wear myself out. Problem is, I live in the middle of nowhere and have no vehicle. So I'm doing the car search, which exceedingly frustrating. So far, only piles of junk are available in my price range. The appointment ended with me doing a bunch of lab work and then heading home. I slept most of the way home.

At the beginning of February I wound up in the hospital. Still not sure if it was allergies or my CF. I had allergy like symptoms but my white blood cell count was through the roof. So I did a round of antibiotics and my mom cleaned the house from top to bottom just in case. So far no more itchy burning eyes and no more runny nose.

The day after I got out of the hospital, my Bible Study group had its Valentine's Dinner. I had finished my dress the day before I went in to the hospital. It was this gorgeous white gown, covered in black lace with a berry coloured ribbon belt, tied in a bow. It was a thrift store find that I made some changes to. It turned out great. And the Valentine's Dinner was a blast. We were all single and friends, so all that crazy pressure to be romantic wasn't there. We were just there to have fun. Next time though I think I'll make a dress that is a little looser around the waist. I couldn't eat as much as I wanted because I ran out of room in my dress.

Things have wound down a little bit. I still have a Movie Night to plan out. My team and I are just having a hard time choosing a meeting time when we can all be present. Which we need to get cracking since Movie Night is on Friday and we don't even have a movie picked.

In the works is me giving a group of ladies a lesson on how to make a hair piece like the ones I make. Hopefully, it all goes through. I think it would be fun and a challenge. I'm used to art lessons with pre-schoolers not adults. So while I'm sure I won't have to worry about anyone trying to eat the glue, as adults we lose some of our creativity. Pre-schoolers don't know rules about coloures and techniques. They just pick what they want to go together and do it. I had a little girl who made a purple snow man and she was proud of it. Adults have a little trouble letting go of the rules. Snowmen are white, the sky is blue, and the grass is green. Any deviation from that is wrong. So trying to show them otherwise can be a challenge. I was making my list of materials needed for the project, and I really had to think. Besides glue, the rest of my materials can be random. Sometimes I use ribbon, sometimes beads or buttons, sometimes shells. I use whatever inspires me at that moment. It's fun, it's quirky, and there are no rules. I hope this turns out well.

Also in the works is my church's annual Night at the Oscars. You get to dress up (in formal wear or costume), have dinner, and have fun with everyone. I plan on going in costume this year. It's mostly complete. I just have to finish the corset and make a hat. The hat has proven challenging. Mostly, because I just want a small black hat that I can decorate myself. What I am finding are already decorated hats. I don't want to spend a bunch of money on something I'm going to take apart and redo my own way. It's frustrating. So it's back to the drawing board.

I hope you're keeping just as busy and staying out of mischief.

Till next time.

For updates on my transplant journey, click here.

Another Day, Another Doctor Appointment

Yesterday, I had a follow up at my CF clinic. After a bout with the stomach flu and then a miserable head cold, I am happy to say that my lung function stayed the same and my weight didn't change either. My sinuses were still draining, but at least it was all clear. I told my doctor that Jalapeno Cornbread worked wonders for my cold. He laughed and told me that he didn't think he could prescribe it to the other CFers with colds.

I'm serious though, my grandfather gave me some of that cornbread when my sinuses were so swollen that I had an unbearable headache. The cornbread worked faster than the Advil I was taking. I spent most
 of my cold eating Mexican food, just to keep my sinuses happy.

The rest of my appointment went fairly well. I had my usual complaint about not being able to be as active as I used to. Not much he can do there. And we went over the pain in my back (I tore a muscle a few months ago and the pain has been slow to go away). We talked about my crazy blood sugars (mostly lows) and ideas on how to put on more weight. We talked about how much fun I have riding on my grandfather's quad (and how much gunk it clears out). My doctor recommended that I should ride the quad at least twice a week. I guess if the doctor orders it I should do as he says. Darn :o)  Then he ordered a bunch of labs, I took a Xanex (I have a real phobia of needles) and went down to the lab.

That was the fastest lab draw I've ever had. And the technician had a lot of vials to fill. Of course the Xanex worked a little too fast. I had a hard time focusing on stuff and kept dropping my notebook.

Don't think I was crazy enough to drive myself home after that. My mom drove me to my appointment. And she drove me home. I took a nap on the way home. I went to bed early and slept like a log. So, the Xanex was really helpful with having labs done. I just can't plan anything for the rest of my day. And I don't like the drugged feeling. I feel the same way when I take Benadryl. So it's pretty safe to say that I'm only taking the stuff for labs and that's it. Luckily, my doctor is aware of my problem so he only schedules labs when necessary.

So now I am clear headed, it's a bright sunny day out (not normal California winter weather). I think I'll follow doctor's orders and take the quad out. With a helmet of course.

End of 2012

I hope everyone had a Merry Christmas. I did. Christmas Day was low key and fun. I spent the whole day eating. Hopefully some of those calories went to my hips. I have to say I lucked out. I got the first two seasons of Big Bang Theory and a gift card for the third season. So I'm set to have a a Big Bang Theory marathon. I even have a new popcorn maker for endless popcorn.

The Christmas season always tends to get busy. In a good way though. I like all the cooking and baking. I enjoy sampling all the different meats and cheeses. And pasta, Yummmmm. Of course tomorrow is the last party of the year. I plan on spending it with friends. Hoping that there will be more than carbs available for snacking.

I figured I'd try to get one last post in before the New Year. Of course just because the holiday season tones down doesn't mean I get a break. January is the birthday month in my family. We have at least one birthday each week in January. I am so glad I have a birthday in July it's not so close to the holiday season that people are done with parties and it's in the summer when you can have water fights and lots of swimming.

With the New Year coming up, I guess I should be making my resolution list. Haven't figured out my New Year's resolutions yet. I guess the main one would be to gain some weight. Maybe I should try finding a workout routine that I can do (and enjoy)  despite having to use the oxygen. I hear that there's a water aerobics class for seniors and disabled people at the local gym, so I am thinking about finding the price to join and trying that out. I miss being in the water. I miss hiking, and riding my bike. I just need to figure out to do all this with this heavy tank tagging along.

I'll see both my regular doctor and the transplant doctors in January. See how that goes.

Hope Everyone has a Happy New Year.

For Transplant related posts click here.

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.

For transplant related posts please go here

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.

October Update

September was pretty eventful. I wound up in the hospital due to severe dehydration. The attending their completely irritated me. He would not listen. He kept ordering lab draws to the point that I had bruises and my veins were going on strike. I kept trying to tell him to lay off and he wouldn't. I was so happy to finally be going home.

At home I wound up with a severe allergic reaction. So I was on Benadryl for a week. So I was pretty useless during that time.

When I finished home IVs I went to my follow up appointment. My lung function had actually gone down. I needed a break from IVs so I didn't go back on meds. I did gain all the weight back that I had lost while sick. The doctor did a walking test on me. I've been complaining for awhile that when I walk around or try to work out, my heart rate keeps going crazy and my brain starts to scream at me. But I kept getting told that I was having an anxiety attack. I couldn't understand why a simple walk would cause an attack so I just kept pushing myself.

So my doctor ordered a walking test. Instead of testing my sats after I walk (which is how the walking tests at the transplant center are conducted) my doctor ordered that my sats should be checked while I am walking. Well, while walking I dropped to 85%. When I stopped and sat down my sats shot back up. So now when I workout or exercise, I have to use oxygen. It's going to take some getting used to.

My doctor also took the anxiety I feel when I get labs done into consideration. Since I already do relaxation techniques and am still having issues my doctor ordered some anti-anxiety medication. I'm supposed to use it only for labs. We're hoping that it'll relax me enough so that my veins won't constrict. We'll see how it works the next time I have labs.

The following day, I had to take my dog to the vet. He managed to get a fox tail deep into his paw. The vet had to sedate him and really go in deep to remove it. She let me stay in the room for the whole procedure. My dog is back to normal now. He's already trying to chase the sheep again. I don't think he got the memo on how to be a Lhasa Apso.

During all this, I was moving to a new house. So the stress with being sick was combined with the stress of moving. We still don't have everything unpacked.

I also was able to talk to COTA about keeping my blog open. We came to an agreement. I get to keep my Fight to Inhale blog going and use their site for all transplant related blogging.

As you can see it's been a pretty hectic month.

For transplant related posts please click here

Somber

A lot has happened since my last post. I was planning on providing a lengthy post today. That post is still in the works.

Today is a somber day. Last night my stepfather passed. My mother found him when she got off work. The coroner told us it looks like he had a massive heart attack. Everyone is trying to cope with the news. My mother is taking it very hard. No one should find their loved ones like that.