Today the heavens got a new angel. My friend SM, who has been waiting on the vent unit passed away today. She waited ten months on a ventilator for those lungs to come. She was a fighter, with more strength and fight in her than most people, her courage is one of legend. My prayers go out to her family and friends. She will always be treasured.
You will never be forgotten.
Saturday, April 14, 2012
Monday, April 9, 2012
New Look, Same Blog
I was hoping to give this blog a new look and so I did. Not sure if I will stick with it but it certainly is a bit more upbeat.
Today was Monday and all day I kept thinking it was Sunday, that usually happens with a holiday. It also happens when your sister decides to stay a day past the weekend, it completely throws off a persons sense of time. Although you would have thought spending my whole morning at the clinic/hospital, waiting, I would have realized it was not, in fact, the weekend anymore.
However today was a big day, today I got my tiny little stomach tube removed. Seven months after it was placed it is gone and in its place a second belly button. Sweet, another scar, I've lost count. It was very painless to remove, the hope is now it closes up fairly quick so I don't have to worry about leaking all over the place...gross! Had to be careful what I drank today, only thicker things and I had to sip. Do you know how hard it is when all you really want is to guzzle a glass of water?
Not only did I get my tube or rather my button, since that is really more what it was, removed but I got to see a friend of mine that also has CF. He is a doctor in his 50's and I just love running into him, we always have such great conversations and it is so great to connect with others with CF. We always seem to run into each other at just the right time. I am inspired by him and I think others with CF should be also, to be a pediatric anesthesiologist in cardiology - pretty impressive. He's very supportive and always leaves me with a smile.
Well, enjoy the bright, shiny, new look.
Today was Monday and all day I kept thinking it was Sunday, that usually happens with a holiday. It also happens when your sister decides to stay a day past the weekend, it completely throws off a persons sense of time. Although you would have thought spending my whole morning at the clinic/hospital, waiting, I would have realized it was not, in fact, the weekend anymore.
However today was a big day, today I got my tiny little stomach tube removed. Seven months after it was placed it is gone and in its place a second belly button. Sweet, another scar, I've lost count. It was very painless to remove, the hope is now it closes up fairly quick so I don't have to worry about leaking all over the place...gross! Had to be careful what I drank today, only thicker things and I had to sip. Do you know how hard it is when all you really want is to guzzle a glass of water?
Not only did I get my tube or rather my button, since that is really more what it was, removed but I got to see a friend of mine that also has CF. He is a doctor in his 50's and I just love running into him, we always have such great conversations and it is so great to connect with others with CF. We always seem to run into each other at just the right time. I am inspired by him and I think others with CF should be also, to be a pediatric anesthesiologist in cardiology - pretty impressive. He's very supportive and always leaves me with a smile.
Well, enjoy the bright, shiny, new look.
Saturday, April 7, 2012
I thought my walk yesterday was fantastic, and it was, but today I topped it by running. As I walked on the treadmill today I kept increasing my speed and at one point I just started running, and I did so for 2 minutes. From there I was able to walk at a higher speed then I have yet to do on my treadmill. So, after years of not running, I ran and it felt exhilarating and freeing.
So, even thoug I laid awake for over an hour last night I had a really great day. I even ironed a shirt and dress for Easter Sunday service, as I wasn't sure if it will be a dress day or pant day tomorrow. I still struggle with the gut no butt issue so no matter what I wear I feel awkward, but that doesn't mean I can't be pressed. Now talk about not doing something for a long time, I don't think I have laid an iron to close since we left our last house and I had to actually locate my iron and buy myself a new squirt bottle. But I actually enjoyed ironing.
I better call it a day and hope for a good night sleep. Wishing you all a Happy Easter.
So, even thoug I laid awake for over an hour last night I had a really great day. I even ironed a shirt and dress for Easter Sunday service, as I wasn't sure if it will be a dress day or pant day tomorrow. I still struggle with the gut no butt issue so no matter what I wear I feel awkward, but that doesn't mean I can't be pressed. Now talk about not doing something for a long time, I don't think I have laid an iron to close since we left our last house and I had to actually locate my iron and buy myself a new squirt bottle. But I actually enjoyed ironing.
I better call it a day and hope for a good night sleep. Wishing you all a Happy Easter.
The Neighborhood
On October 20, 2010 we moved into this house, that next week I took Marco for a walk around the block, literally around just one block and that was all I could handle. I hadn't worn oxygen outside for exercise yet, only during exercise inside but that was the longest and most painful walk of my life. That would be one of maybe three walks I took between October and November of that year.
Fast forward to April 6, 2012, yesterday, I took my first real walk around the neighborhood by myself. I took one a few weeks ago with Dad but this was my first time, by myself...did I say that once already, just making sure you get the gist. It was great! I didn't just walk one block, nope I walked more and I can't even tell you because I don't know how far, but I do know that it was up and down hills, and down a path I have never set foot on in my life. It is much more of a workout walking outside then on the treadmill and so many better things to look at.
I hope there will be many more outdoor walks to come, looks like today might be a not so weather friendly day to walk but soon, very soon and who knows how far I will go next time.
Fast forward to April 6, 2012, yesterday, I took my first real walk around the neighborhood by myself. I took one a few weeks ago with Dad but this was my first time, by myself...did I say that once already, just making sure you get the gist. It was great! I didn't just walk one block, nope I walked more and I can't even tell you because I don't know how far, but I do know that it was up and down hills, and down a path I have never set foot on in my life. It is much more of a workout walking outside then on the treadmill and so many better things to look at.
I hope there will be many more outdoor walks to come, looks like today might be a not so weather friendly day to walk but soon, very soon and who knows how far I will go next time.
Friday, April 6, 2012
Decision Day!
What a day! Thursday was D-day, decision on surgery. Nissen Fundoplication or not, well I opted for not. I had such a struggle with this decision. There is some research out there that says this surgery that helps with GERD could improve situations with rejection in post transplanted lungs. So, with a heavy heart I weighed the pros and cons and still was confused. No one ever wants to make the wrong decision, especially when it can be so life altering and my lungs are so important but since I don't have a crystal ball I had to decide on my own. I weighed the possibility of effecting my lungs, but also the fact that I would be losing a lot of the weight I just worked so hard to put on because I won't have a regular diet for 4-6 weeks, mostly liquid to start then soft foods. On top of that the problems with possible bloating and pressure and learning how to eat different and not swallow so much air. Plus trying to recover from the pain. I have had so many surgeries and still feel like I am not on solid ground from the abscess or the last rejection that I am left tired and deflated at times. I also have the kidney issues that need to be addressed, so I opted for no surgery and trying a new anti-rejection drug in the next weeks to come, if all goes well that will hopefully work better than my current drug regime and to be vain, give me back my hair!
I also will be having my stomach tube removed, hopefully next week, which really is nothing more than deflating it and pulling it out. So then i will be all on my own to gain weight, and the way I have been cooking and eating, that shouldn't be too difficult. That was my other issue with surgery as I mentioned was the weight I would lose, if I eventually have to have the surgery I would like a few more pounds on this frame to work with.
Then the sad news came of my friend waiting on the vent. She has once again hit a very large bump in the road, sounds as though no longer transplantable. She has been such a courageous Cyster, fighting CF with everything she has and trying to hold out for those lungs. There is something to be said for her determination and tenacity. God gives each of us a different road to follow, we don't know which fork we follow or where that road will lead but along the way we meet wonderful people, and experience amazing things, though it's over all too quick hopefully somewhere along the journey we are grateful for having been here and have in turn touched the lives and hearts of those around us. I know my friend will leave a mark forever on many hearts around her.
May your day find you smiling at least once, for today is a blessing from the moment you opened your eyes.
Tuesday, April 3, 2012
Rural Route 1
Woke up at 4 this morning, I know big surprise. Except this morning I blame my issue on eating too much Whiskey BBQ chicken last night, but I still think it's worth it.
I was dreaming before I woke up about the house I grew up in, or rather the land not the house. I dreamt I was driving a jeep through the field and through some holes to get to a picnic area. Which not sure why a picnic area since we never 'picnicked' in our field but that might have interjected because of the picnic in the book I read last night. In any case, when I woke at 4 I immediately remembered all the times we actually did go for a drive through our back acreage. We had 10 acres total, the front one or so was where the house was and the lawn we mowed but behind the house was a small hilled acreage, a field of natural grasses, at one point a garden or two in different locations, our burning barrel (you do that in the country), horse pasture, and our wood pile.
We had a lots of trees on our property, old ones and of course we also planted new ones. But every year we would trim our trees and it was our duty as kids to help haul the branches, which I think I might have talked about once before. We also had my dad's small pickup truck and trailer, which we would occasionally fill full of twigs and branches and drive to the back of the acreage to unload the wood onto the very big, ever growing pile of brush. The ride was so bumpy, you'd bounce up and down, side to side, and enjoyed every minute of it. I always thought we would get stuck or something, but we never did, I should have known better since my dad was driving.
Working with my dad never felt like a chore I don't know why, I guess because he never made it seem like work, he never yelled, he always instructed. What we didn't know or understand he explained with patience. Guess that is why I always have such fond memories of living on our little hobby farm, it was a happy place. I think as a kid I never thought I would live anywhere else but there, my life would be on that farm and I would be happy forever. Of course when I was 19 we moved and I was so sad when we left, I still find myself sad at moments when I relive those memories and yet happy to have had them.
That house was home, it will always be home in my mind. My play mates were my siblings and my pets, not that I didn't have friends but living rural is different then city living. I remember fondly my grass green carpet in my bedroom that I shared for a while with my sister. I remember the original velvet curtains in the living room when we first moved there, or the mouse population in the house before remodel. I remember all the work my dad did to fix up the house and all the work my mom did to take care of the inside of the house and the gardening. They worked hard at that place, but I also know with it came a sense of ownership and pride. Those were also the days when us kids found ways to entertain ourselves outside, creating journeys, building forts, shooting black and yellow spiders, endless ways to occupy our time that I can't even recall right now but I know we very seldom, if ever, used the word board, because if nothing else we mowed.
As I lay awake this morning wishing I could go back to sleep I was also happy to have such fond memories. How lucky I was to grow up like that. How lucky I was to be a kid and be creative. How lucky I was to have parents that instructed not demanded. They say home is where the heart is, and even though we move on in life and live in our own house with our own things and day to day living, there will always be a piece of my heart that will forever remain at Rural Route 1 Box 105.
I was dreaming before I woke up about the house I grew up in, or rather the land not the house. I dreamt I was driving a jeep through the field and through some holes to get to a picnic area. Which not sure why a picnic area since we never 'picnicked' in our field but that might have interjected because of the picnic in the book I read last night. In any case, when I woke at 4 I immediately remembered all the times we actually did go for a drive through our back acreage. We had 10 acres total, the front one or so was where the house was and the lawn we mowed but behind the house was a small hilled acreage, a field of natural grasses, at one point a garden or two in different locations, our burning barrel (you do that in the country), horse pasture, and our wood pile.
We had a lots of trees on our property, old ones and of course we also planted new ones. But every year we would trim our trees and it was our duty as kids to help haul the branches, which I think I might have talked about once before. We also had my dad's small pickup truck and trailer, which we would occasionally fill full of twigs and branches and drive to the back of the acreage to unload the wood onto the very big, ever growing pile of brush. The ride was so bumpy, you'd bounce up and down, side to side, and enjoyed every minute of it. I always thought we would get stuck or something, but we never did, I should have known better since my dad was driving.
Working with my dad never felt like a chore I don't know why, I guess because he never made it seem like work, he never yelled, he always instructed. What we didn't know or understand he explained with patience. Guess that is why I always have such fond memories of living on our little hobby farm, it was a happy place. I think as a kid I never thought I would live anywhere else but there, my life would be on that farm and I would be happy forever. Of course when I was 19 we moved and I was so sad when we left, I still find myself sad at moments when I relive those memories and yet happy to have had them.
That house was home, it will always be home in my mind. My play mates were my siblings and my pets, not that I didn't have friends but living rural is different then city living. I remember fondly my grass green carpet in my bedroom that I shared for a while with my sister. I remember the original velvet curtains in the living room when we first moved there, or the mouse population in the house before remodel. I remember all the work my dad did to fix up the house and all the work my mom did to take care of the inside of the house and the gardening. They worked hard at that place, but I also know with it came a sense of ownership and pride. Those were also the days when us kids found ways to entertain ourselves outside, creating journeys, building forts, shooting black and yellow spiders, endless ways to occupy our time that I can't even recall right now but I know we very seldom, if ever, used the word board, because if nothing else we mowed.
As I lay awake this morning wishing I could go back to sleep I was also happy to have such fond memories. How lucky I was to grow up like that. How lucky I was to be a kid and be creative. How lucky I was to have parents that instructed not demanded. They say home is where the heart is, and even though we move on in life and live in our own house with our own things and day to day living, there will always be a piece of my heart that will forever remain at Rural Route 1 Box 105.
Monday, April 2, 2012
Nature Walk and More
I did something Sunday that I haven't done in years, in fact it's been so long the last time I remember doing it was for my college art show which was back in 2004. You will laugh when I tell you that what I did was paint my fingernails. Yup, I sat outside with my 'duck' mask on (it's really stylish) in the breeze and painted my nails. Mind you the polish still stunk but it was tolerable enough. As a side note the reason I didn't paint them is my old lungs would literally bleed from the smell. When I was all done I looked down and thought how odd the whole thing looked. Like someone else's fingers are attached to my hands.
I should also mention that my nails have never looked better or been stronger. The last years I have had the worst nails, breaking, peeling, and just not healthy. I couldn't get them to grow long if I tried, now I don't even try. I guess this is one of those 'good' side effects of transplant. Seriously I no longer have bumps in my nails and I can't bend them, if that wasn't cool enough they seem to grow faster than I can keep track of. Oh, and the shape of my nails have changed. People with lung issues typically have clubbing, wide nails, mine have narrowed, it is just crazy to look down at my hands. Some days I am mesmerized by them and I am sure by now my husband, niece and mom are tired of me saying 'look at my nails'. Although Josie was most exited yesterday when I sent here a photo of my nails, not only has she never recalled seeing them painted but they were so long. How cool is it to text my 12 year old niece to discuss my nails, really does life get any better than that?
Sunday was such a nice day, once the sun came out. I got to spend some time with the littlest niece and nephew at Quarry Hill, we had a great time walking around and collecting various nature items, like tickle sticks - I never knew they existed but then again anything with a fuzzy end qualifies as a tickle stick. I also found that when walking with children the things they want to collect end up being the things adults carry and nothing in the child's hand...amazing. But what fun kids and so very smart. I had a great time, I think they did too.
I should also mention that my nails have never looked better or been stronger. The last years I have had the worst nails, breaking, peeling, and just not healthy. I couldn't get them to grow long if I tried, now I don't even try. I guess this is one of those 'good' side effects of transplant. Seriously I no longer have bumps in my nails and I can't bend them, if that wasn't cool enough they seem to grow faster than I can keep track of. Oh, and the shape of my nails have changed. People with lung issues typically have clubbing, wide nails, mine have narrowed, it is just crazy to look down at my hands. Some days I am mesmerized by them and I am sure by now my husband, niece and mom are tired of me saying 'look at my nails'. Although Josie was most exited yesterday when I sent here a photo of my nails, not only has she never recalled seeing them painted but they were so long. How cool is it to text my 12 year old niece to discuss my nails, really does life get any better than that?
Sunday was such a nice day, once the sun came out. I got to spend some time with the littlest niece and nephew at Quarry Hill, we had a great time walking around and collecting various nature items, like tickle sticks - I never knew they existed but then again anything with a fuzzy end qualifies as a tickle stick. I also found that when walking with children the things they want to collect end up being the things adults carry and nothing in the child's hand...amazing. But what fun kids and so very smart. I had a great time, I think they did too.
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| Checking out the spring. |
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| See what I mean! |
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