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I hope everyone had a great Thanksgiving. I know I did. I spent the day with my family. We ate, joked, cooked, and ate some more. Mick decided to take a leap into the pond. By the end of the day he was a muddy mess. He was pretty proud of himself though.
I had awoken from my food induced coma on Friday to get a start on this post. I had been mulling over topics in my head. I didn't want to do an "I'm Thankful" post. Not because I have nothing to be thankful for (I have tons of reasons to be thankful), but because I just wanted to write something different (yes, I have a rebellious side). I did have this post all planned out and written, but the internet gods would not allow me access till today.
I look forward to the holiday season. All the lights, decorations, events, and food. I get pretty excited. For me, the holidays start with Halloween. No, I do not go and get all my Christmas shopping done in October (though the day after Halloween is the best time to find a gift for my sister). I mean that Halloween marks the beginning of my holiday season.
I spend my time planning and making my costume. I put a lot of work and detail into this. On Halloween, I don on my new costume, put on make-up (one of the rare times I wear the stuff) and head out to celebrate. Once the night is over, I get excited thinking about Thanksgiving.
Thanksgiving marks the official start of the holiday season. My main reason for getting excited probably makes most people (especially females) cringe. I'm not talking about the gifts, shopping, or dressing up, or even the events. I am talking about the food.
The time from Thanksgiving till New Year's is an endless buffet of food. During this time period there is food everywhere. Visiting a friend's house results in munching on cookies, drinking hot cocoa, sharing a meat tray, or enjoying homemade fudge. It's great. It's also the only time period where I don't have some random lady telling me the honey roasted cashew I'm eating will go straight to my hips (my response to that is generally a wide eyed, "You promise?").
To some, my love affair with food would seem like an unhealthy obsession. In reality, it's vital to my well being. For me, maintaining a healthy weight is a full time job. My body burns calories almost faster than I can consume them. It's pretty hard work. So someone like me looks forward to all that holiday food. It helps me get my weight back to my healthy range.
I don't really have much of a sweet tooth (something I did not inherit from my dad). I'm more of a protein junkie, so meat and cheese platters are my friends. I do have a weakness for chocolate, so chocolate cake, cookies, brownies and hot cocoa rarely get a refusal from me. And I love veggies with dip. Everything just tastes better smothered in cheese. To top things off, the holiday season means eggnog. That wonderful drink contains more calories and tastes better than any of those high calorie shakes sold in stores.
I plan on enjoying this holiday buffet. Maybe it'll help me regain all that weight I had lost during my hospitalization. Hopefully by New Year's I'll have that bikini ready body. Anyone care to join me on the beach? In January?
Sunday, November 29, 2009
Friday, November 20, 2009
You Can't Take a Vacation From Cystic Fibrosis
The trip to Tahoe went quite well. Froze my non existent rear off (car therastat read ICEY), soaked in a hotspring, did some shopping, and came up with the idea for this post.
While packing for my trip, I went through the normal frustration of what I should take, what I should leave behind, and how am I going to fit it all in my bag. I'm not talking about clothes, makeup, shoes, or any of that other girly stuff. Those who know me know that I don't wear makeup (too much time spent in the morning doing treatments, not enough time to apply makeup), t-shirt and jeans are my main attire, and I strictly wear my Etnies (though for Tahoe I did pack my snow boots). So what am I talking about then? I'm talking about all my CF supplies.
Just because I go on vacation doesn't mean CF does. So all the treatments I do at home, I still have to do while I'm out. Skipping a treatment is not an option.
So there I was with all my meds spread out on my bed. I had devied them into two piles 1) The necessary meds and 2) The just in case meds.
The necessary meds are the medications that I cannot skip. They may be a hassle and some take a huge chunk out of my day, but they keep me out of the hospital. These medications consist of my enzymes, multiple vitamins, prednisone, singulair, prevacid, voraconozole, zithromax, fosamax, advair, spiriva, pulmozyme, albuterol, and hypertonic saline.
Once I figure out what is necessary, I have to calculate how much I'm going to need for the trip. I don't have room to pack all my pill bottles and boxes of vials. The pills are pretty easy. Most, I only take once or twice a day and I have a pill holder that holds enough pills for once week. So I sort all the pills out by day and put them in their spot of the pill box. Then it's onto the inhaled medications.
Five of my meds are for inhalation. Some I only take once a day. Others, I take three times a day. Since I was going to be gone for at least seven days, that's a lot of vials (three of them come in liquid vials) to be packing. That turns out to be 42 vials plus I threw in a couple of extra days' worth just in case something comes up and I didn't get home in the time allotted. And because these medications are in liquid form and I have to inhale them, I have to pack a special compressor and the necessary nebulizers (there are three of them) that will turn the liquid into a mist that I can inhale.
Luckily, I have a portable compressor that takes up less room in my bag than the compressor I used around the house. The portable also has a battery that lasts for about two inhaled medications. I can't do all my meds in a row with the portable because the motor over heats and will shut off automatically. So I have to take a break between meds, get something to drink, brush my teeth, anything until the motor cools off. The portable is fine for on the go, but a hassle for daily use.
The two other inhaled medications come in a tablet that gets crushed in a device and then the powder is inhaled. So the devices have to be packed and so do the tablets.
Now it's on to the Just in Case pile. The meds in that pile consist of a prescription pain killers for uncontrollable pain, benadryl for allergic reactions, advil for controllable pain, extra inhaler, TOBI (inhaled tobramycin) for lung infections, and hydrocortisone cream for allergic reactions. Actually, that's a pretty small pile, except for the TOBI which comes in a large box and requires another nebulizer. So I pack a little of each. I wasn't in need of them at the time and figured I wouldn't need them for the whole trip.
Since I had decided which meds to pack and how much, now I needed to pack them in a way that they wouldn't lose potency. TOBI and Pulmozyme require refridgeration. So I have to store them in one of those artic lunchbags with a couple of icepacks before putting them into my bag.
Now all my my medications were packed as well as their delivery devices. But I wasn't done. I also had to bring something that would allow me to get all that mucous out of my lungs. I couldn't let it build up for seven days. At home I use a device called the VEST. It's this vest that you put on and it shakes you, in turn shaking the mucous out of the lungs. I couldn't very well pack the VEST. It weighs about 40 lbs. And while there is a portable version available, I haven't been able to convince my insurance to pay for it and I do not have access to the funds needed for such an item. Luckily, for this trip the decision was an easy one. My mother was coming along and she knows how to do manual CPT (clapping the hands on the chest to loosen up mucous). So the VEST got to stay at home.
I managed to fit all this stuff into one large backpack. My clothes and hygiene items went into a second bag. Threw on my snow boots and a heavy jacket and I was ready for Tahoe.
While packing for my trip, I went through the normal frustration of what I should take, what I should leave behind, and how am I going to fit it all in my bag. I'm not talking about clothes, makeup, shoes, or any of that other girly stuff. Those who know me know that I don't wear makeup (too much time spent in the morning doing treatments, not enough time to apply makeup), t-shirt and jeans are my main attire, and I strictly wear my Etnies (though for Tahoe I did pack my snow boots). So what am I talking about then? I'm talking about all my CF supplies.
Just because I go on vacation doesn't mean CF does. So all the treatments I do at home, I still have to do while I'm out. Skipping a treatment is not an option.
So there I was with all my meds spread out on my bed. I had devied them into two piles 1) The necessary meds and 2) The just in case meds.
The necessary meds are the medications that I cannot skip. They may be a hassle and some take a huge chunk out of my day, but they keep me out of the hospital. These medications consist of my enzymes, multiple vitamins, prednisone, singulair, prevacid, voraconozole, zithromax, fosamax, advair, spiriva, pulmozyme, albuterol, and hypertonic saline.
Once I figure out what is necessary, I have to calculate how much I'm going to need for the trip. I don't have room to pack all my pill bottles and boxes of vials. The pills are pretty easy. Most, I only take once or twice a day and I have a pill holder that holds enough pills for once week. So I sort all the pills out by day and put them in their spot of the pill box. Then it's onto the inhaled medications.
Five of my meds are for inhalation. Some I only take once a day. Others, I take three times a day. Since I was going to be gone for at least seven days, that's a lot of vials (three of them come in liquid vials) to be packing. That turns out to be 42 vials plus I threw in a couple of extra days' worth just in case something comes up and I didn't get home in the time allotted. And because these medications are in liquid form and I have to inhale them, I have to pack a special compressor and the necessary nebulizers (there are three of them) that will turn the liquid into a mist that I can inhale.
Luckily, I have a portable compressor that takes up less room in my bag than the compressor I used around the house. The portable also has a battery that lasts for about two inhaled medications. I can't do all my meds in a row with the portable because the motor over heats and will shut off automatically. So I have to take a break between meds, get something to drink, brush my teeth, anything until the motor cools off. The portable is fine for on the go, but a hassle for daily use.
The two other inhaled medications come in a tablet that gets crushed in a device and then the powder is inhaled. So the devices have to be packed and so do the tablets.
Now it's on to the Just in Case pile. The meds in that pile consist of a prescription pain killers for uncontrollable pain, benadryl for allergic reactions, advil for controllable pain, extra inhaler, TOBI (inhaled tobramycin) for lung infections, and hydrocortisone cream for allergic reactions. Actually, that's a pretty small pile, except for the TOBI which comes in a large box and requires another nebulizer. So I pack a little of each. I wasn't in need of them at the time and figured I wouldn't need them for the whole trip.
Since I had decided which meds to pack and how much, now I needed to pack them in a way that they wouldn't lose potency. TOBI and Pulmozyme require refridgeration. So I have to store them in one of those artic lunchbags with a couple of icepacks before putting them into my bag.
Now all my my medications were packed as well as their delivery devices. But I wasn't done. I also had to bring something that would allow me to get all that mucous out of my lungs. I couldn't let it build up for seven days. At home I use a device called the VEST. It's this vest that you put on and it shakes you, in turn shaking the mucous out of the lungs. I couldn't very well pack the VEST. It weighs about 40 lbs. And while there is a portable version available, I haven't been able to convince my insurance to pay for it and I do not have access to the funds needed for such an item. Luckily, for this trip the decision was an easy one. My mother was coming along and she knows how to do manual CPT (clapping the hands on the chest to loosen up mucous). So the VEST got to stay at home.
I managed to fit all this stuff into one large backpack. My clothes and hygiene items went into a second bag. Threw on my snow boots and a heavy jacket and I was ready for Tahoe.
Saturday, November 7, 2009
Good News
Went MIA for a bit. Had plans to post weekly updates, but with Halloween, a visit to my mother's, and preparing for a trip to Tahoe, posting just didn't happen.
Saw the doctor on Friday. My lung function is up to 35%, which is pretty darn good considering I've been below 20% for over a year. He said that for some reason my lungs are trying to recover though he can't explain it. I asked about stopping the prednisone since I was doing better and was sick of starving all the time. He didn't want me to stop taking it just yet, but did agree to lower the dose. So I get to work down to 10mg/day and stay there till I stay healthy for at least three months. Also have to stay on the anti-fungal till after I stop taking the prednisone. For the next three months I get to continue seeing the swirling lights.
Even though I am doing much better, the doctor still wants me to go see the transplant team in Stanford. Have yet to hear when I'm supposed to go. I think it's mostly just to get everything planned out for when my lungs decide to stop improving. I'm crossing my fingers and hoping for another 10 years with these suckers though.
The doctor did give me permission to go back to my normal activities. So it's back to biking and walking my dog for me. Can't swim anymore on account of the dropping temps and I hate swimming in cold weather. I need to get access to an indoor, heated pool. Also started a new workout with my sister. She got a video routine called "Turbo Jam." Let's just say five minutes into the workout, I started coughing up plugs. And my legs were killing me for the following two days.
It was a reality check on how much muscle I had lost over the last month of being sick. It really sucked. Basically, it means that I'm back where I started earlier this year. I have to increase my protein intake and really work on getting those muscles back.
Over all though, it's been a good week. Makes it easier to have a positive outlook for next week. Next time you hear from me, I'll have returned from Tahoe.
Saw the doctor on Friday. My lung function is up to 35%, which is pretty darn good considering I've been below 20% for over a year. He said that for some reason my lungs are trying to recover though he can't explain it. I asked about stopping the prednisone since I was doing better and was sick of starving all the time. He didn't want me to stop taking it just yet, but did agree to lower the dose. So I get to work down to 10mg/day and stay there till I stay healthy for at least three months. Also have to stay on the anti-fungal till after I stop taking the prednisone. For the next three months I get to continue seeing the swirling lights.
Even though I am doing much better, the doctor still wants me to go see the transplant team in Stanford. Have yet to hear when I'm supposed to go. I think it's mostly just to get everything planned out for when my lungs decide to stop improving. I'm crossing my fingers and hoping for another 10 years with these suckers though.
The doctor did give me permission to go back to my normal activities. So it's back to biking and walking my dog for me. Can't swim anymore on account of the dropping temps and I hate swimming in cold weather. I need to get access to an indoor, heated pool. Also started a new workout with my sister. She got a video routine called "Turbo Jam." Let's just say five minutes into the workout, I started coughing up plugs. And my legs were killing me for the following two days.
It was a reality check on how much muscle I had lost over the last month of being sick. It really sucked. Basically, it means that I'm back where I started earlier this year. I have to increase my protein intake and really work on getting those muscles back.
Over all though, it's been a good week. Makes it easier to have a positive outlook for next week. Next time you hear from me, I'll have returned from Tahoe.
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