One year ago today, October 23, I received the best gift of my life. A gift that one can never thank the giver for. Today I celebrate the one year anniversary of my new lungs in this old body. Okay old is relative but my new life with these lungs is beautiful.
Amazing!
Wednesday, October 24, 2012
Saturday, October 13, 2012
Abundance
Today was one of those fall days you dream about where it's a little chilly, rainy, and it's the weekend so sitting on the couch watching old movies is all but okay. I however did not do that. Apparently it is also the day to bake, and bake things with apples. My sister sent me a photo of her apple crisp, just as I put mine in the oven. She invited me over to have some, I would love to if only she didn't live 1.5 hours away. I had a good laugh about that.
I also baked up my squash and froze that today. I had purchased four squash at the Farmer's Market last weekend and today finally felt alive enough to take care of them. I love squash and now I will get to enjoy it during the winter months. This week seemed to be my week to freeze things. I cleaned and chopped onion and green pepper for the freezer also. Guess I am hunkering down for winter, kinda like the Ingall's family but nothing in my freezer came from my hard, sweat over gardens. Nope mine came from someone else's. Next I figure I will buy a side or quarter of beef for my freezer, then I will truly be set.
Of course all this will come crashing down on me tomorrow when I have to actually function for the day and my body will then want to sit on the couch. Likely it will be a gorgeous day!
I am watching the calendar closer these days. You know when your a kid and your birthday is just weeks away and it is so exciting? Well my first, 'second chance at life' birthday is just ten days away and I still can't believe it. I can't believe that we have made it back around to another October, let alone soon to be 23rd. I recall there being some weird things around that day and I am trying to remember all that happened the day before. I don't remember anything past 7 a.m. on Oct. 23 until I ate the best popsicle of my life after surgery. The awful pictures tell that story. I will see what I can recount from those days over the next few. I sometimes wish there was a video of my surgery (which there probably is). I would like to see it. Gross as it may seem, it is also quite the miracle and how often in life do we get to experience that.
I see the doc on Monday. Results and further bronch discussions I am sure. As I was all prepared for a stent and didn't get one, probably a good thing but so curious when and if I will ever know life again without a PICC line.
Time to go put my feet up for the night, it's been a busy day.
Happy harvest everyone.
I also baked up my squash and froze that today. I had purchased four squash at the Farmer's Market last weekend and today finally felt alive enough to take care of them. I love squash and now I will get to enjoy it during the winter months. This week seemed to be my week to freeze things. I cleaned and chopped onion and green pepper for the freezer also. Guess I am hunkering down for winter, kinda like the Ingall's family but nothing in my freezer came from my hard, sweat over gardens. Nope mine came from someone else's. Next I figure I will buy a side or quarter of beef for my freezer, then I will truly be set.
Of course all this will come crashing down on me tomorrow when I have to actually function for the day and my body will then want to sit on the couch. Likely it will be a gorgeous day!
I am watching the calendar closer these days. You know when your a kid and your birthday is just weeks away and it is so exciting? Well my first, 'second chance at life' birthday is just ten days away and I still can't believe it. I can't believe that we have made it back around to another October, let alone soon to be 23rd. I recall there being some weird things around that day and I am trying to remember all that happened the day before. I don't remember anything past 7 a.m. on Oct. 23 until I ate the best popsicle of my life after surgery. The awful pictures tell that story. I will see what I can recount from those days over the next few. I sometimes wish there was a video of my surgery (which there probably is). I would like to see it. Gross as it may seem, it is also quite the miracle and how often in life do we get to experience that.
I see the doc on Monday. Results and further bronch discussions I am sure. As I was all prepared for a stent and didn't get one, probably a good thing but so curious when and if I will ever know life again without a PICC line.
Time to go put my feet up for the night, it's been a busy day.
Happy harvest everyone.
Friday, October 5, 2012
Autumn Winds
Fall has arrived! The air is crisp, the leaves swiftly blowing across the lawn down the street and into someone else's yard. Though the colors are quickly receding it has been enjoyable to watch summer leave and fall come.
I had a great summer, minus the health issues. I got to enjoy so much time with my friend Karen at her pool. It was a great time, I usually included it as part of my exercise, meaning I would got for a walk and end up at her house. Due to my PICC line and transplant restrictions I had to keep my right arm out of the water and my face. Other than trying to fall into the deep end where the shallow goes into the deep there were no mishaps in the pool.
After that last visit in August, I believe I haven't had much walking outside which is sad. It has nothing to do with the pool but rather with how I felt and the weather. I am mostly tied to my treadmill these days, there were many days over the weeks when I didn't even get on the treadmill I felt so rotten. But today, knock on wood, as last time I boasted about feeling better I was slammed a week later with feeling like shit. So I say this lightly. My numbers have been increasing in the lab these days. Today I blew an FEV1 of 2.65, which translates into a 84.2% lung function. I think my highest blow in the lab is above 2.7+. This has been one wicked climb back up a hill.
The real issue still exists, and 'what is that?' you ask! That is where the scar tissue from the new lung meets the old airway likes to shrink. Part of the reason I have been on IVs every six hours for the last two+ months is because with that airway closing I can't cough out any junk in there, thus collecting and causing infection. I also now have fungus in there so I do five different rounds of inter venous medicines a day, the 4 am is the worst. It never fails the alarms goes off at 4 am and I can't decide in my sleepy confusion at first if I am hooking up or disconnecting. The med takes an hour to run in so I sleep for the hour it runs in.
I hadn't been in my studio in weeks, but late last week I got in there to finish my homework for my Children's Illustration class. Today I am about 90% done with another project I have been working on that makes me feel good.
Every day is still a guessing game. I usually have a couple good hours each day, and sometimes even a half a day. I have yet to have a whole day where I wake up feeling fantastic but that still may come - I can hope.
So the airway issue will be addressed once again this coming Tuesday, I have a bronch scheduled. Apparently they have decided a stint might be the way to go. The infection doesn't clear up and at this time appears to be our best option. So, here's hoping the right decisions are made and I can start feeling better and getting back to my 'normal' life. Only time will tell.
For now I am doing what I can each day. I give a lot of credit to my husband for helping while I was really down and out. I spent most of my time on the couch or at the clinic and he was a laundry and dishwashing machine. He proved his worth!
I will try to post some of my children's illustration projects soon. The final is doozy, but let's hope well worth the energy.
I had a great summer, minus the health issues. I got to enjoy so much time with my friend Karen at her pool. It was a great time, I usually included it as part of my exercise, meaning I would got for a walk and end up at her house. Due to my PICC line and transplant restrictions I had to keep my right arm out of the water and my face. Other than trying to fall into the deep end where the shallow goes into the deep there were no mishaps in the pool.
After that last visit in August, I believe I haven't had much walking outside which is sad. It has nothing to do with the pool but rather with how I felt and the weather. I am mostly tied to my treadmill these days, there were many days over the weeks when I didn't even get on the treadmill I felt so rotten. But today, knock on wood, as last time I boasted about feeling better I was slammed a week later with feeling like shit. So I say this lightly. My numbers have been increasing in the lab these days. Today I blew an FEV1 of 2.65, which translates into a 84.2% lung function. I think my highest blow in the lab is above 2.7+. This has been one wicked climb back up a hill.
The real issue still exists, and 'what is that?' you ask! That is where the scar tissue from the new lung meets the old airway likes to shrink. Part of the reason I have been on IVs every six hours for the last two+ months is because with that airway closing I can't cough out any junk in there, thus collecting and causing infection. I also now have fungus in there so I do five different rounds of inter venous medicines a day, the 4 am is the worst. It never fails the alarms goes off at 4 am and I can't decide in my sleepy confusion at first if I am hooking up or disconnecting. The med takes an hour to run in so I sleep for the hour it runs in.
I hadn't been in my studio in weeks, but late last week I got in there to finish my homework for my Children's Illustration class. Today I am about 90% done with another project I have been working on that makes me feel good.
Every day is still a guessing game. I usually have a couple good hours each day, and sometimes even a half a day. I have yet to have a whole day where I wake up feeling fantastic but that still may come - I can hope.
So the airway issue will be addressed once again this coming Tuesday, I have a bronch scheduled. Apparently they have decided a stint might be the way to go. The infection doesn't clear up and at this time appears to be our best option. So, here's hoping the right decisions are made and I can start feeling better and getting back to my 'normal' life. Only time will tell.
For now I am doing what I can each day. I give a lot of credit to my husband for helping while I was really down and out. I spent most of my time on the couch or at the clinic and he was a laundry and dishwashing machine. He proved his worth!
I will try to post some of my children's illustration projects soon. The final is doozy, but let's hope well worth the energy.
Sunday, September 16, 2012
Back in the Slammer
It's kind of hard to wrap the head around being back in the hospital after being out nearly five months. I am a much better patient now then I was before my transplant and time on the vent. Much more relaxed, but I think that has to do with how I feel. Meaning, with my cf lungs I went in to the hospital not feeling well and never feeling better when I left, just more drugged. I also always worried my port would get neglected and clot off, that no longer exists. Now i try not to get bent out of shape when my meds aren't on time, I try to give more leeway. I draw the line at my transplant drugs, 45 minutes late I start getting a little edgy, for the most part they are on time.
The frustrating part is I had felt so good until that first bronch just over two weeks ago and then it all went haywire. I am glad the bronch revealed the ugly fungus that is in there but not happy with how the bronch left me feeling short of breath. I am trying to keep my frustration contained and in perspective, this is the land of transplant. The ground at times is firm but sometimes shaky and you never know when you will return to the solid ground you were happy to be on.
There is no one path that transplant takes, and you never ever forget you are living on borrowed time. You can go about your day, plan your life, dream those dreams of things to do but always in the back of your mind is the fear that it will all slip away. You try not to dwell on it but it's like getting a song in your head out of nowhere. You sing the song for awhile then get annoyed and it goes away for some hours or days then boom, it comes back. The mind is the worst trap and the one thing you can't run away from.
I don't think I will ever know a normal life, which is nothing new since it was far from normal before. I just have to figure out how to define my life. Right now I am so scheduled with meds my day is full and they make me feel sluggish also. I hope someday this pseudo and fungus will remove itself from my lungs. I won't hold my breath but I will hope.
I have had nearly eleven great months, grueling and hard at times but I wouldn't give them back for nothing. Life is not guaranteed perfect nor is it ever defined as smooth. Life is ever changing and undefined. If you are lucky enough to do something you love every so often then life is good. Eleven months ago I had no future plans because I wasn't sure I would survive another week or month, but here I am. The only plan I have now is the one to take this day and enjoy it. It is the only one any of us is guaranteed.
Saturday, September 1, 2012
Watercolor
Here is the project I have been working on. I promised on FB to post it once I was finished. Here it is. And no I am not worried about my friends stealing this, I am more those who might come across it, thus the 'do not copy' watermark.
Monday, August 13, 2012
Life's Beauty
I went for a walk Sunday, big surprise as I take a walk everyday. Yesterday I walked west toward John Adams, my junior high back when I was a whole 12 to 14 years old. I walked down past the ball field and water tower and up 18th avenue to 37th street and home. It was around the water tower when the drizzle started and I thought how smart I was to leave my umbrella at home, in the closet, on the hook where it does no one any good. I also realized I wouldn't melt so I enjoyed the rest of my mile walk home.
As I started my walk yesterday I was thinking about all the great things I got at the Dick Blick art store and all the fabulous things I want to paint, draw, create and so forth with my bounty. I also realized as I walked that I am so overwhelmed some days by the prospect of creating that it cripples me.
Since transplant I notice things different, I notice the color of the sky is bluer, the grass greener, the flowers more vibrant and contrasts between colors and textures just pop like I am looking through some sort of special lenses. I guess in some way, as cliche as this may seem, I liken it to what Dorothy must have felt landing in Oz after leaving Kansas. A world that just existed to a world with more promise and excitement that could have ever been imagined.
When I am outside I am overwhelmed by how beautiful things are and I wish with all my heart I could capture it in some form. That is why I use my camera so much, hopes of capturing something that I can hardly describe when it speaks to me.
On my deck, right now, I have flower pot with sweet potato vine and petunias. The vine is the most beautiful chartreuse and the petunia is a fuchsia, the combination is wonderful and when the sun shines on it and the leaves cast shadows upon itself it just stirs me to want to do something with those colors.
I have thousands of ideas for paintings floating through my head, I wake up with ideas, I go to bed with ideas and often I lose ideas. I would need a sketch book strapped to my hand in order to get down everything I think of.
Everything in life is beautiful, I only hope that others can see the beauty that surrounds them everyday. It can be the way the shadow from the tree dapples the ground or side of the house. The way the sun reflects off a piece of glass on the wind chime. It's those moments that something captures my eye and makes me catch my breath that I realize how lucky I am to have been there at that moment.
What is beautiful in your life?
As I started my walk yesterday I was thinking about all the great things I got at the Dick Blick art store and all the fabulous things I want to paint, draw, create and so forth with my bounty. I also realized as I walked that I am so overwhelmed some days by the prospect of creating that it cripples me.
Since transplant I notice things different, I notice the color of the sky is bluer, the grass greener, the flowers more vibrant and contrasts between colors and textures just pop like I am looking through some sort of special lenses. I guess in some way, as cliche as this may seem, I liken it to what Dorothy must have felt landing in Oz after leaving Kansas. A world that just existed to a world with more promise and excitement that could have ever been imagined.
When I am outside I am overwhelmed by how beautiful things are and I wish with all my heart I could capture it in some form. That is why I use my camera so much, hopes of capturing something that I can hardly describe when it speaks to me.
On my deck, right now, I have flower pot with sweet potato vine and petunias. The vine is the most beautiful chartreuse and the petunia is a fuchsia, the combination is wonderful and when the sun shines on it and the leaves cast shadows upon itself it just stirs me to want to do something with those colors.
I have thousands of ideas for paintings floating through my head, I wake up with ideas, I go to bed with ideas and often I lose ideas. I would need a sketch book strapped to my hand in order to get down everything I think of.
Everything in life is beautiful, I only hope that others can see the beauty that surrounds them everyday. It can be the way the shadow from the tree dapples the ground or side of the house. The way the sun reflects off a piece of glass on the wind chime. It's those moments that something captures my eye and makes me catch my breath that I realize how lucky I am to have been there at that moment.
What is beautiful in your life?
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| Old Home Farm Summer 2012 |
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| Old Home Farm Summer 2012 |
Wednesday, August 1, 2012
August Already?
As I walked in the door 15 minutes ago I took a breath and realized I had absolutely no where to be, nothing pressing to do and what on earth was I going to do with my acquired time? Then it hit me, I need to blog.
I feel awful seeing that it has been nearly a month since I last blogged. It has been quite the month, to say the very least, and I guess summer is also a much busier time. It isn't that my life has suddenly become boring and I have nothing to talk about because it has been a roller coaster of emotions and appointments and uncertainty. But there have also been beautiful moments and those I like to think are the best part.
So where does one begin? Two weeks ago I was told I likely had Lymphoma, after four days of thinking the worst but hoping the best it was confirmed that I do NOT have Lymphoma but rather a nicely infected lymph node. So, my lovely friend pseudomonas has reared it's ugly head once again and is likely here to stay, as it is like trying to remove a tattoo with an emery board. But I will take it all in stride, I am good at the antibiotic, medication/pill thing, it's like a skill. I can't control what happens but I can do what is asked of me to try to make it better in the short term that will in some way help the long term. I know what pseudomonas does, it's what killed my original lungs. I will continue to give it the old one two punch and see where it goes.
The good news for the last month is I have been able to paint, and create. I always have way more ideas then I have time to try. I had the great opportunity to drive farm machinery, I have had many great bike rides, and walks. I have spent many a days at the pool, relaxing chatting and allowing my stress to wash away with the beautiful glistening water. Read some really great books, four or more, I lost count. My oldest and dearest friend gave birth to her first child, a baby girl, this has been such a joy. Having known her since I was 13ish, it is crazy to see those dreams we have talked about for years come true. I am so excited and proud of the woman she has become and the mom she will be.
I will be honest I have had some blue days, when I realize that this can all be taken away so quickly and that the dreams I had growing up are nothing of what my life is today. I don't think there is one thing in my life, other than getting married, has turned out like I had dreamed. So some days I mourn that. Some days I mourn that I will never be that full time career woman, or the ranch wife in Montana (I know, completely different paths there), or the mom whose little blond daughter will go with her to the grocery store like I did with my mom. But I also sit and thank God for all I do have and for still being here on this earth with the ones I love.
I don't know where life will take me, wish I did. I am so eager and full of expectation of doing things, of making beautiful artwork that I fear it being taken away. But fear gets a person nowhere and I can't go down that road to many times. I always feel, and have since transplant that something is out there, just beyond my reach. It isn't that it isn't unreachable it's just that right now I am not tall enough to get my hand on it, but one day soon I will reach out, and it will be within my reach. When it does show up I will be ready.
I feel awful seeing that it has been nearly a month since I last blogged. It has been quite the month, to say the very least, and I guess summer is also a much busier time. It isn't that my life has suddenly become boring and I have nothing to talk about because it has been a roller coaster of emotions and appointments and uncertainty. But there have also been beautiful moments and those I like to think are the best part.
So where does one begin? Two weeks ago I was told I likely had Lymphoma, after four days of thinking the worst but hoping the best it was confirmed that I do NOT have Lymphoma but rather a nicely infected lymph node. So, my lovely friend pseudomonas has reared it's ugly head once again and is likely here to stay, as it is like trying to remove a tattoo with an emery board. But I will take it all in stride, I am good at the antibiotic, medication/pill thing, it's like a skill. I can't control what happens but I can do what is asked of me to try to make it better in the short term that will in some way help the long term. I know what pseudomonas does, it's what killed my original lungs. I will continue to give it the old one two punch and see where it goes.
The good news for the last month is I have been able to paint, and create. I always have way more ideas then I have time to try. I had the great opportunity to drive farm machinery, I have had many great bike rides, and walks. I have spent many a days at the pool, relaxing chatting and allowing my stress to wash away with the beautiful glistening water. Read some really great books, four or more, I lost count. My oldest and dearest friend gave birth to her first child, a baby girl, this has been such a joy. Having known her since I was 13ish, it is crazy to see those dreams we have talked about for years come true. I am so excited and proud of the woman she has become and the mom she will be.
I will be honest I have had some blue days, when I realize that this can all be taken away so quickly and that the dreams I had growing up are nothing of what my life is today. I don't think there is one thing in my life, other than getting married, has turned out like I had dreamed. So some days I mourn that. Some days I mourn that I will never be that full time career woman, or the ranch wife in Montana (I know, completely different paths there), or the mom whose little blond daughter will go with her to the grocery store like I did with my mom. But I also sit and thank God for all I do have and for still being here on this earth with the ones I love.
I don't know where life will take me, wish I did. I am so eager and full of expectation of doing things, of making beautiful artwork that I fear it being taken away. But fear gets a person nowhere and I can't go down that road to many times. I always feel, and have since transplant that something is out there, just beyond my reach. It isn't that it isn't unreachable it's just that right now I am not tall enough to get my hand on it, but one day soon I will reach out, and it will be within my reach. When it does show up I will be ready.
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| Driving this big daddy! |
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| Peacock Acrylic on Canvas |
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