Normally I love the snow. We don't get that much in North Carolina so any that we see during a winter is nice. However, this snow couldn't have come at a worse time. All of our house renovations have been pushed back by a few days. The flooring guy was supposed to work through the weekend--that didn't happen. The countertop guys were suppose to start on Monday--that won't happen. So, it's just another delay for us getting into our house. Ugh! Casey was determined to get to our house yesterday so he decided to walk. In the 4 inches of snow! The apartment where we're staying is about a mile and a half from our new house. He made it okay. He packed a backpack of 'rations' and set off. I felt a little like Ma from Little House on the Prairie as he left. :) He was able to drive over this morning and that's where he is now and will be for some hours to come. I must say he is a very determined man and I'm very fortunate that he is so handy and patient with all of this house craziness. I feel a little guilty about not going with him but I really needed a rest.
Last week was hectic. I worked a lot. I'm a part-time nanny for a 4 year old and sometimes her 6 year old sister. Florence, has a few health challenges just like me. She has yet to be officially diagnosed, despite trips to several medical centers--even one in Montreal, Canada! All the doctors know for sure is that she has some type of auto-immune disease. When I first met her she was not talking or walking or interacting much at all. In December she started a procedure called plasmapheresis, this procedure helps to cleanse and recirculate her blood. The procedure has worked wonders! She is now able to walk, talk (although not as well as an average 4 year old), and play. It is so nice to see her improving. This little girl is a trooper! She never asks for help and doesn't want any special attention. I think this is true for every kid (or adult) suffering from a chronic disease. We don't want to be singled out!
Over the weekend I started feeling a little worn out. I always feel worn out when too much is going on. Work, the house, working on the website for the LTF, and just everyday stuff have taken a little toll on me. It's nothing new. When I start to feel this way I always have to 'drop out' for a day or two. I'm very fortunate that I can do this. I don't have any kids and my husband is incredibly understanding. Usually 'dropping out' means that I don't plan anything. I rest, rest, and rest some more. This weekend was the perfect opportunity to do this. Yesterday, I spent most of the day in my pjs while looking online for decorating ideas. Very low stress. Today, I took a looonnngg nap with my kitty, exercised a little--aerobic, of course, watched some HGTV, and now I'm blogging. Just this two days of chilling out have restored me. On Friday I had a seriously stuffy nose, low-grade fever, and some aches. Today, while I still have some nose issues, my fever is gone as are my aches.
My bronchoscopy was rescheduled from tomorrow, Feb 1 to Monday, Feb 22. While I was ready to get it over with, it seems to have worked out since I know we will have icy roads tomorrow. I really didn't want to have to go out that early anyway. 7:30am--yikes! I am a little relieved, too, because Dr. P doesn't seem in an urgent rush which I take to mean he's not super worried about a case of rejection. My PFTs have increased a little now that I'm getting back into regular exercise. I'm going to keep it up for sure!!!
I'm feeling ready for the week ahead. I think. Hopefully we'll be moving in to the new house this coming weekend. Crossing my fingers!
Sunday, January 31, 2010
Tuesday, January 26, 2010
It's a Tuesday, not Wednesday
I woke up this morning and could have sworn it was Wednesday. No, just Tuesday. There's a lot going on this week and I guess I'm trying to hurry it along. For starters we hope to be moving into our new house by Sunday. The floors are being put in as I write and after that there's only countertops to place in the kitchen and bathroom. Whew, we've been in our apartment for 3 1/2 months now. I must admit, though, apartment living is not at all that bad. I did, however, wake up at 5:30am today to hear a college girl balling her eyes out as it sounded like she and her boyfriend were breaking up. Yes, it was 5:30am, and yes I was nosy and listened until about 5:45am. Oh drama!
I've started exercising again--I needed that kick in the pants by everyone! It felt good and I feel very alert now. Mornings are always so hard for me, I've never been a 'morning person' but I think working out in the morning will help energize me (along with that strong cup of coffee I always have). Tracie, my lung transplant coordinator, called yesterday and gave me my lab results from last Thursday appointment. All was well in that department. She scheduled my bronchoscopy for Feb. 1st, so we'll see what that shows. If there is a problem or something shows up in the biopsy than I'll have an appointment that following Thursday.
Well not much more to say today. I'm getting ready to go hang out with my little buddy, Florence. She is the little girl I keep for a great family in Durham. She's quite an inspiration. I'll have to blog a little about her on another day.
I've started exercising again--I needed that kick in the pants by everyone! It felt good and I feel very alert now. Mornings are always so hard for me, I've never been a 'morning person' but I think working out in the morning will help energize me (along with that strong cup of coffee I always have). Tracie, my lung transplant coordinator, called yesterday and gave me my lab results from last Thursday appointment. All was well in that department. She scheduled my bronchoscopy for Feb. 1st, so we'll see what that shows. If there is a problem or something shows up in the biopsy than I'll have an appointment that following Thursday.
Well not much more to say today. I'm getting ready to go hang out with my little buddy, Florence. She is the little girl I keep for a great family in Durham. She's quite an inspiration. I'll have to blog a little about her on another day.
Friday, January 22, 2010
First time blogging...here I go
Well, I have never blogged before and I don't know if I'll even have any followers but it's something I wanted to try. This blog will be a sort of outlet for me as I am a 33 year old CF survivor and 9 year post transplant patient and as those numbers increase I am becoming more and more thankful for my life. On the other hand, as those numbers increase I become more and more worried about my future. Being that I've already had a lung transplant, last November was 9 years, I have to worry more and more about the day when my body starts to reject the lungs that saved my life. It's a harsh reality, but one that I must be ready for. It's so hard to think beyond today when I'm healthy and happy. There are always reminders in my everyday life. Some reminders are much more in your face; like a memorial service for a dear friend. Blogging for me is a way to get it all out there. I want to write down everything that's going on health-wise, home-wise (it's just me, the hubs, Casey, and our two cats, Lex and Mia), basically just everything. I haven't kept a journal in years and I'm excited about sharing even if it's only with myself.
Things have been crazy these past few months. We sold our first house in October and bought a new house in December. We ended up moving into a tiny furnished apartment (we're still here) while the new house is being remodeled. Apartment living hasn't been bad but Casey and I are going a little stir crazy. The cats are terrorizing each other and making our lives a little more difficult with their bad behavior. All of our stuff is in storage--it has been since October. Our house is almost finished (so says the contractor) and we hope to be in by the first week of February. It's been pretty tight in the Schmidt household this month as we had to make a rent payment and a mortgage payment. This cannot go on again in February! Casey's really done a lot on his own with the house. He's really amazing me with his DIY skills. His made a few mistakes but for the most part he's accomplishing all that he set out to do. I must admit that when we first saw this house (it was a foreclosure) I was adamant that it was NOT for me. Eventually, I came around and saw the potential. It's transitioning nicely, but it will need more work throughout the coming months. That's not a big deal, I'm just incredibly thankful that I have a house to come home to.
All of the house stuff has been a little stressful for me. I'm a typical Type A personality so it's hard for me to adjust to change. I, of course, want to know ahead of time what the change is going to be so I can plan for it. Life doesn't work that way, Dana. : ) It has taken a little toll on my health, too. I've been very lax in my exercising---so, so bad for a lung transplant recipient, and my PFTs (pulmonary function tests) have taken a small drop. I had an appointment yesterday and I when I was blowing I just knew they weren't as good as they could be. I got a wee bit scared but my doc doesn't seem concerned because my PFTs rise and fall all the time. He showed me my history from way back in the day and it's true they're not very consistent. He is going to do a bronch in the next few weeks just to be sure. He wants to ease my mind and his. In the meantime I have to get in gear and hit the treadmill and start weightlifting again! No more excuses about the house, or work, or anything! Sandy is a fabulous transplant coordinator and she gave me the biggest lecture yesterday, she said, "What is all of the other stuff worth if you're not here to enjoy it?". She is so right.
In other news, the Lung Transplant Foundation for which I am heavily involved with as secretary and website committee chair has finally launched it's website! I, along with the other website team members, Jana, Amber, Aaron, Kathryn, and Kim have been working so hard to make this website a reality. My doctor, Scott Palmer, MD, and Jeff Goldstein founded this organization to help promote awareness and raise funds for lung transplant related research. Lung transplantation is a like the "red-headed stepchild" of research Dr. Palmer says. There is just not a lot of money going towards finding ways to help stop chronic rejection of transplanted lungs. The five year survival rate is very low compared to other solid organ transplants. That needs to be addressed, come on it's 2010! We need more research! If you can please check out, www.lungtransplantfoundation.org and spread the word.
Lastly, I want to say above everything else I am a CF survivor. Dealing with Cystic Fibrosis is a full-time job and the pay is lousy. :) I have met so many people who are in the same boat as I am and they are all the strongest and most amazing people I will ever know. They give me courage and I'm thankful for the support we can all share with one another. Sometimes you feel all alone in this world of chronic illness but then you remember you are definitely NOT alone!
Look for a post soon on the Durham Great Strides walk set for April 17, 2010!
Good night all!
Things have been crazy these past few months. We sold our first house in October and bought a new house in December. We ended up moving into a tiny furnished apartment (we're still here) while the new house is being remodeled. Apartment living hasn't been bad but Casey and I are going a little stir crazy. The cats are terrorizing each other and making our lives a little more difficult with their bad behavior. All of our stuff is in storage--it has been since October. Our house is almost finished (so says the contractor) and we hope to be in by the first week of February. It's been pretty tight in the Schmidt household this month as we had to make a rent payment and a mortgage payment. This cannot go on again in February! Casey's really done a lot on his own with the house. He's really amazing me with his DIY skills. His made a few mistakes but for the most part he's accomplishing all that he set out to do. I must admit that when we first saw this house (it was a foreclosure) I was adamant that it was NOT for me. Eventually, I came around and saw the potential. It's transitioning nicely, but it will need more work throughout the coming months. That's not a big deal, I'm just incredibly thankful that I have a house to come home to.
All of the house stuff has been a little stressful for me. I'm a typical Type A personality so it's hard for me to adjust to change. I, of course, want to know ahead of time what the change is going to be so I can plan for it. Life doesn't work that way, Dana. : ) It has taken a little toll on my health, too. I've been very lax in my exercising---so, so bad for a lung transplant recipient, and my PFTs (pulmonary function tests) have taken a small drop. I had an appointment yesterday and I when I was blowing I just knew they weren't as good as they could be. I got a wee bit scared but my doc doesn't seem concerned because my PFTs rise and fall all the time. He showed me my history from way back in the day and it's true they're not very consistent. He is going to do a bronch in the next few weeks just to be sure. He wants to ease my mind and his. In the meantime I have to get in gear and hit the treadmill and start weightlifting again! No more excuses about the house, or work, or anything! Sandy is a fabulous transplant coordinator and she gave me the biggest lecture yesterday, she said, "What is all of the other stuff worth if you're not here to enjoy it?". She is so right.
In other news, the Lung Transplant Foundation for which I am heavily involved with as secretary and website committee chair has finally launched it's website! I, along with the other website team members, Jana, Amber, Aaron, Kathryn, and Kim have been working so hard to make this website a reality. My doctor, Scott Palmer, MD, and Jeff Goldstein founded this organization to help promote awareness and raise funds for lung transplant related research. Lung transplantation is a like the "red-headed stepchild" of research Dr. Palmer says. There is just not a lot of money going towards finding ways to help stop chronic rejection of transplanted lungs. The five year survival rate is very low compared to other solid organ transplants. That needs to be addressed, come on it's 2010! We need more research! If you can please check out, www.lungtransplantfoundation.org and spread the word.
Lastly, I want to say above everything else I am a CF survivor. Dealing with Cystic Fibrosis is a full-time job and the pay is lousy. :) I have met so many people who are in the same boat as I am and they are all the strongest and most amazing people I will ever know. They give me courage and I'm thankful for the support we can all share with one another. Sometimes you feel all alone in this world of chronic illness but then you remember you are definitely NOT alone!
Look for a post soon on the Durham Great Strides walk set for April 17, 2010!
Good night all!
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