The definition of mercy is "compassion or forbearance shown especially to an offender or to one subject to one's power." I am an offender. I have a nasty habit of being in a rush. Perhaps because I try to pack too much into my day; perhaps because I'm wired to be more of a rabbit then a turtle; perhaps I just think it is stupid to have a speed limit of 35 miles per hour in the main drag of town. Speeding is my way of protesting by civil disobedience an unreasonable law. Oh, why do I do the things I do? I do not know all the reasons. I am a complex creature with many motivations.
Anyone who says "it doesn't hurt to ask" has never been in front of the judge here in the friendly city of Athens, Tennessee. The first time I got a speeding ticket I threw myself on the mercy of the court. He looked me in the eye and crisply said, "Young lady, there is no mercy here." When that didn't work I asked if it would be better if I pleaded ignorance because I was new in town and unaware of the speed zones. His honor politely stated that ignorance is no excuse and suggested that I pay my ticket, have a nice day and be on my way.
So today I didn't expect any leniency. I was merely hoping to receive an extension in paying the latest fine. Sure enough, it was the same judge that I had been in front of before. I recognized him but I don't think he recognized me, the wig helped to disguise me. (Just kidding.) I told him my circumstances, that I am sick, that I am broke from paying so many medical expenses. He politely listened to my story and then said I am free to go. I was shocked. I didn't expect mercy. I know I don't deserve mercy. I am a law breaker.
As I reflect on this afternoon I am aware of a mixture of emotions including relief, gratitude and a new, foreign feeling-a desire to want to try harder to obey the law. I am indebted to a kind judge who showed me compassion when I deserved judgement.
Thursday, December 4, 2008
Tuesday, November 18, 2008
The Gift of Time
Time is a funny thing. We all have 24 hours in a day, 7 days a week, 365 days a year. When things go by quickly we see time fly. When we are on a trip we want to make good time and travel there faster. We feel stressed when we are pressed for time. Most of us don't feel like we have enough time in the day and we try to buy some time by prioritizing our schedule. Yet many of us let time slip away. We suspect things will work out in due time and we can rest in knowing that time will tell all things. Perhaps because of my ponderings one might think I have too much time on my hands.
I have been given the gift of time. Last Tuesday I returned to Duke University for my 8 week check up. In spite of recent hospital stays I am doing well. My pulmonary function tests reports that my decline has stabilized. The doctor is not convinced that doing a transplant at this time would prolong my life any longer then not doing one at this time. In other words he thinks we can get some more mileage out of my current lungs. The whole purpose of transplant is to keep me alive as long as possible. I like that idea. I've got things to do, people to see, children to be raised, a life to be lived. I cherish my time for every moment is a gift to be enjoyed.
I have been given the gift of time. Last Tuesday I returned to Duke University for my 8 week check up. In spite of recent hospital stays I am doing well. My pulmonary function tests reports that my decline has stabilized. The doctor is not convinced that doing a transplant at this time would prolong my life any longer then not doing one at this time. In other words he thinks we can get some more mileage out of my current lungs. The whole purpose of transplant is to keep me alive as long as possible. I like that idea. I've got things to do, people to see, children to be raised, a life to be lived. I cherish my time for every moment is a gift to be enjoyed.
Saturday, November 8, 2008
Perspective is all we need.
Today I will be going home from the hospital. I've been here since Tuesday. Apparently I caught a bug while waiting in the ER over the weekend for gall bladder surgery. I had been home less then 24 hours when my fever started spiking. So once again, I evoked all there is in me to do what I have to do and return to my home away from home. I am grateful for good doctors, good hospitals and medicines that eventually help you feel better.
With that being said let me also say that I really hate being sick. I hate the feeling of knowing that I cannot stop my body from feeling like it's been hit by a mac truck. I cannot stop the feeling of being left behind while all the world goes on with their lives, right on schedule. I cannot stop the disconnect that happens with my family because I have no emotional or physical energy to offer them. I remind myself when I enter the hospital that this too shall pass.
The first few days go quickly as I lay around and sleep most of the time, exhausted from the effort of breathing, relieved that I have nothing to do but rest. Usually by the third or fourth day I am revived enough to watch TV. I like to watch Discovery health channel. I am reminded that there are many far worse off then I am. Last night I viewed the documentary about autistic savant twins obsessed with Dick Clark. The show really helped me feel good about my situation. Perspective, the capacity to view thing in their true relations or relative importance, is all we need.
With that being said let me also say that I really hate being sick. I hate the feeling of knowing that I cannot stop my body from feeling like it's been hit by a mac truck. I cannot stop the feeling of being left behind while all the world goes on with their lives, right on schedule. I cannot stop the disconnect that happens with my family because I have no emotional or physical energy to offer them. I remind myself when I enter the hospital that this too shall pass.
The first few days go quickly as I lay around and sleep most of the time, exhausted from the effort of breathing, relieved that I have nothing to do but rest. Usually by the third or fourth day I am revived enough to watch TV. I like to watch Discovery health channel. I am reminded that there are many far worse off then I am. Last night I viewed the documentary about autistic savant twins obsessed with Dick Clark. The show really helped me feel good about my situation. Perspective, the capacity to view thing in their true relations or relative importance, is all we need.
Sunday, November 2, 2008
Change of Plans
I awoke yesterday eagerly looking forward to communing with Mother Nature in the mountains. The leaves are at their peak and we were going to travel to the Smokies to see their vibrancy up close and personal. I knew our plans were about to change when I woke myself up moaning with pain. I had the worst stomach ache I've ever experienced. No matter what position I laid in I could not get comfortable. By the time the doctor opened his office at 9 I had been in pain for several hours and knew I needed to be seen. The rest of the day was spent consulting with specialists, obtaining blood work, doing tests and traveling to the hospital in Knoxville. A little before midnight last night I bid my final farewell to my gall bladder.
Today I am in recovery mode with my precious narcotics bringing me sweet relief. Perhaps next weekend I'll make it to the mountains.
Today I am in recovery mode with my precious narcotics bringing me sweet relief. Perhaps next weekend I'll make it to the mountains.
Wednesday, October 29, 2008
The Great Escape
I've been on vacation. For over two weeks I have been in Florida. Our family was blessed when friends of ours offered us free tickets to Disney World, Epcot and Disney Studios. For two days we were in the midst of the Magic Kingdom. The weather was warm and breezy as we walked the pristine, clean streets with the castle in the background. We squealed with delight on the roller coasters, including the Aerosmith rock-n-roll coaster that went from 0 to 60 mph in 2.8 seconds. (I highly recommend it for my fellow adrenaline junkies). We had a good time of being together and having fun.
After Disney we travelled south. On Friday evening, the 17th, my friends hosted a fundraising event at Homestead Mennonite Church. It was a night of blessing; the worship was wonderful, the stories were funny and affirming. I felt so blessed. God has given me so many supportive people in my life. $10,000 was raised that evening. I am still in awe.
The rest of my vacation was spent talking deeply with old friends, basking in the sunshine and enjoying great adventures in the land of familiar. For two weeks I was sheltered from the reality of the heaviness of life. I was blessed with good health while I was gone and was able to briefly forget how sick I am. It was a wonderful trip that left me feeling refreshed and rejuvinated. I am thankful for the reprieve of the great escape.
After Disney we travelled south. On Friday evening, the 17th, my friends hosted a fundraising event at Homestead Mennonite Church. It was a night of blessing; the worship was wonderful, the stories were funny and affirming. I felt so blessed. God has given me so many supportive people in my life. $10,000 was raised that evening. I am still in awe.
The rest of my vacation was spent talking deeply with old friends, basking in the sunshine and enjoying great adventures in the land of familiar. For two weeks I was sheltered from the reality of the heaviness of life. I was blessed with good health while I was gone and was able to briefly forget how sick I am. It was a wonderful trip that left me feeling refreshed and rejuvinated. I am thankful for the reprieve of the great escape.
Monday, October 6, 2008
Ya'll Come
Have I mentioned how beautiful Tennessee is in the fall? The leaves are starting to change colors. The night air is cool but not cold and the days are sunny and warm but not hot. This is one of my favorite times of the year.
Have I mentioned that we have a big house? We have two guest bedrooms down stairs plus a pull out couch, lots of floor space and some great blow up mattresses. We have housed as many as twenty- two people here. The house was designed and built by James Stutzman, the local Mennonite pastor. He is a fine craftsman and the house reflects his work ethic and attention to detail. I think it is an ideal place for a retreat setting, close to the the Smoky Mountains, less then and hour and a half away, close to the interstate, less then ten miles t0 I-75.
I mention all of this for a couple of reasons. The first being that our house is for sale. We need the money for my lung transplant and recognize now would be a good time to downsize. Anyone interested in relocating or a great vacation home or perhaps setting up a retreat center can contact me for the details. The second reason is to invite our circle of friends (those of you reading this blog) to come for a visit. I noticed this past weekend how much easier it is to get projects done when there is extra support. We are trying to get the house in optimal showing condition given that we are fighting against a declining economy and a slow buyers market. And to be honest, Tom and I are worn out right now. Life has had many challenges over the last couple of years and there is not much left in our reserve tanks. We are trying to figure out how to refuel and recognize that we both get energy from visiting with people. So if you have some time off and want to get away, we promise we won't work you too hard and we'll have a good time. So.....Ya'll come.
Have I mentioned that we have a big house? We have two guest bedrooms down stairs plus a pull out couch, lots of floor space and some great blow up mattresses. We have housed as many as twenty- two people here. The house was designed and built by James Stutzman, the local Mennonite pastor. He is a fine craftsman and the house reflects his work ethic and attention to detail. I think it is an ideal place for a retreat setting, close to the the Smoky Mountains, less then and hour and a half away, close to the interstate, less then ten miles t0 I-75.
I mention all of this for a couple of reasons. The first being that our house is for sale. We need the money for my lung transplant and recognize now would be a good time to downsize. Anyone interested in relocating or a great vacation home or perhaps setting up a retreat center can contact me for the details. The second reason is to invite our circle of friends (those of you reading this blog) to come for a visit. I noticed this past weekend how much easier it is to get projects done when there is extra support. We are trying to get the house in optimal showing condition given that we are fighting against a declining economy and a slow buyers market. And to be honest, Tom and I are worn out right now. Life has had many challenges over the last couple of years and there is not much left in our reserve tanks. We are trying to figure out how to refuel and recognize that we both get energy from visiting with people. So if you have some time off and want to get away, we promise we won't work you too hard and we'll have a good time. So.....Ya'll come.
A Feast Fit For A King
If laughter is good medicine then I think I might have overdosed. What a fun weekend I've had. My Mom, Sister, Aunt and Uncle came to visit. We played cards and laughed. We cleaned and organized together. When everyone left I felt refreshed, blessed and full. My Mom and Aunt can cook!
I feel sorry for everyone who was not me yesterday. Our dinner menu consisted of pork chops, mashed potatoes, green beans, cream corn, pinto beans, corn bread, fried green tomatoes and peach cobbler for dessert. It was a Southern smorgasbord. Good food...good times...good life.
I feel sorry for everyone who was not me yesterday. Our dinner menu consisted of pork chops, mashed potatoes, green beans, cream corn, pinto beans, corn bread, fried green tomatoes and peach cobbler for dessert. It was a Southern smorgasbord. Good food...good times...good life.
Thursday, October 2, 2008
Learning To Lean
I tend to lean toward being a type A personality. I thrive on competition and challenges. I like having goals to work towards. I need a certain amount of pressure to be motivated. I enjoy the chaos of multitasking. I love being on the go. I revel in being self sufficient; proudly rising to all the tasks I must do.
So you can imagine my frustration as I enter a stage of life where I am no longer doing. I am just being. Let me clarify....I am doing less, much less. My days consist of nebulizers, naps, medical appointments, homeschooling, exercising and more naps. I feel tired all of the time. There is always more to be done then I can do. The worst part? I feel so vulnerable.
My journey in life has taken me from being committed to not needing anyone to being downright dependent. You know, the whole "I am a rock, I am an island" routine. I had that down for many years. I was strong in my self sufficiency. I was hard, impenetrable. I was protected. I was alone. Then I learned how to be interdependent; a healthy step in the right direction seeing how I wasn't invincible and I didn't like being alone. Now it seems all that I am is, oh how I despise this word ...... needy.
I'm sure in the big scheme of things all of these trials will all be for my good. I hope to become a happy, well adjusted, well rounded, stable, tranquil person some day but in the mean time I am struggling. I struggle to ask for help. I struggle to receive help (although I am learning to graciously say Thank you.) I struggle to relax in my neediness of others. I was much more comfortable being a rock because as you know...altogether now, everyone sing.... a rock has no pain and and an island never cries.
Will I ever learn to relax and wholly lean on others? Time will tell.
So you can imagine my frustration as I enter a stage of life where I am no longer doing. I am just being. Let me clarify....I am doing less, much less. My days consist of nebulizers, naps, medical appointments, homeschooling, exercising and more naps. I feel tired all of the time. There is always more to be done then I can do. The worst part? I feel so vulnerable.
My journey in life has taken me from being committed to not needing anyone to being downright dependent. You know, the whole "I am a rock, I am an island" routine. I had that down for many years. I was strong in my self sufficiency. I was hard, impenetrable. I was protected. I was alone. Then I learned how to be interdependent; a healthy step in the right direction seeing how I wasn't invincible and I didn't like being alone. Now it seems all that I am is, oh how I despise this word ...... needy.
I'm sure in the big scheme of things all of these trials will all be for my good. I hope to become a happy, well adjusted, well rounded, stable, tranquil person some day but in the mean time I am struggling. I struggle to ask for help. I struggle to receive help (although I am learning to graciously say Thank you.) I struggle to relax in my neediness of others. I was much more comfortable being a rock because as you know...altogether now, everyone sing.... a rock has no pain and and an island never cries.
Will I ever learn to relax and wholly lean on others? Time will tell.
Friday, September 19, 2008
Journey update
I made it. I am done with the IV antibiotics. I got rid of my pic line yesterday. I am done with the oral antibiotics. My hemoglobin is low (8.1, normal is 12 -25) and my red blood cells are low. I started on some nasty tasting iron tablets. I will have my blood checked again on Monday. I hope to avoid a transfusion. I understand why I have felt like doing nothing for weeks. I hope my energy will return soon.
I went to Duke two weeks ago. In the past two months my lung capacity has dropped from 31% to 25%, statistically significant. However my oxygen level stays decent (in the 90's). If I can maintain a good Oxygen level with exercise then I will buy myself some time. If not, then they would like me to move to Raleigh, NC to proceed with transplant. I've been to pulmonary rehab twice so far. I can do half of what I used to do (20 minutes as opposed to 40 Minutes). My oxygen level has stayed high. I am grateful.
I recognize that I am not ready for transplant today. (Will I ever be?) I need to get my house in order, literally and figuratively. Where to start when it feels like I have so much to do? I think I need a nap.
I went to Duke two weeks ago. In the past two months my lung capacity has dropped from 31% to 25%, statistically significant. However my oxygen level stays decent (in the 90's). If I can maintain a good Oxygen level with exercise then I will buy myself some time. If not, then they would like me to move to Raleigh, NC to proceed with transplant. I've been to pulmonary rehab twice so far. I can do half of what I used to do (20 minutes as opposed to 40 Minutes). My oxygen level has stayed high. I am grateful.
I recognize that I am not ready for transplant today. (Will I ever be?) I need to get my house in order, literally and figuratively. Where to start when it feels like I have so much to do? I think I need a nap.
Monday, September 8, 2008
Time Will Tell
I usually enjoy politics. I love debates, the crashing of ideas against each other, the battle of philosophies with each candidate trying to get their point across in the most articulate way possible. In November, no matter who wins, history will be made.
However this year I'm having a hard time getting into the political arena. It's not that I don't care who runs the country; It's the realization that I may not be here four years from now. I am not one to be pessimistic but my meeting with the transplant team last week leaves me with a sobering understanding of the future. Less then 2% of people die on the operating table when they get new lungs; 10% die within the first year; 50% die within the first 5 years.
I know I have always beaten the odds with this disease. I assume I'll beat the odds of transplant as well. Yet the statistics still leave me with a sense of desperation. I not only want to live, I want to live fully. I want to surround myself with people I feel connected to, I want to have long talks, I want to linger at sunset, I want to laugh. alot. I want to worship, I want to take my kids to Disney World. I swing between being purposeful and serious to being silly and frivolous, it's a crazy, schizophrenic way of approaching life. I realized a long time ago most things that take our energy are not that important. So then, how shall I live? I don't know. I sense I'm at a new place. I can not assume life will go on as it always has, at least not my life. Time will tell.
However this year I'm having a hard time getting into the political arena. It's not that I don't care who runs the country; It's the realization that I may not be here four years from now. I am not one to be pessimistic but my meeting with the transplant team last week leaves me with a sobering understanding of the future. Less then 2% of people die on the operating table when they get new lungs; 10% die within the first year; 50% die within the first 5 years.
I know I have always beaten the odds with this disease. I assume I'll beat the odds of transplant as well. Yet the statistics still leave me with a sense of desperation. I not only want to live, I want to live fully. I want to surround myself with people I feel connected to, I want to have long talks, I want to linger at sunset, I want to laugh. alot. I want to worship, I want to take my kids to Disney World. I swing between being purposeful and serious to being silly and frivolous, it's a crazy, schizophrenic way of approaching life. I realized a long time ago most things that take our energy are not that important. So then, how shall I live? I don't know. I sense I'm at a new place. I can not assume life will go on as it always has, at least not my life. Time will tell.
Tuesday, September 2, 2008
The End of a Season
Monday was labor day, the end of summer. No more white shoes; no more long, lingering evenings watching the fireflies dance during dusk; no more carefree, unstructured days without the work of homeschooling; This past summer was the best of times and the worst of times.
I've already expounded on the worst of times in my past entries. I am still in recovery mode from my last hospital stay. I have two more weeks of IV antibiotics as well as oral and nebulized antibiotics. All the medicine is wreaking havoc with my stomach, it's like having constant morning sickness without the joy of a baby.
Now let me expound on the best of times. In between hospital stays I went on vacation. I travelled to Pennsylvania where my friends gathered for a 40th birthday party/fundraiser. It is most humbling for others to do for you what you simply can not do for yourself. Not only did they raise a tremendous amount of money (nearly $7000 in donations and pledges) but they wrote and spoke the most beautiful words to me. They spoke of how I have impacted their lives. They affirmed my past, present and future. They blessed me and gave me courage for the journey. I left the party feeling elated. My life has made a difference. My struggles have not been in vain, my pain has encouraged others who have been in pain. All is not lost.
I believe it is through relationships that we receive our wounds and it is through relationships that we receive our healing. My friends have blessed me and brought healing to my life. They have called forth my beauty; confronted my depravity; reminded me of my dignity and have loved me well. My party reminded me of the power of a well spoken word, the need to speak the truth to each other, the tremendous gift of forgiveness, the value of transparency and how much we need each other as we stumble along on our way home.
I've already expounded on the worst of times in my past entries. I am still in recovery mode from my last hospital stay. I have two more weeks of IV antibiotics as well as oral and nebulized antibiotics. All the medicine is wreaking havoc with my stomach, it's like having constant morning sickness without the joy of a baby.
Now let me expound on the best of times. In between hospital stays I went on vacation. I travelled to Pennsylvania where my friends gathered for a 40th birthday party/fundraiser. It is most humbling for others to do for you what you simply can not do for yourself. Not only did they raise a tremendous amount of money (nearly $7000 in donations and pledges) but they wrote and spoke the most beautiful words to me. They spoke of how I have impacted their lives. They affirmed my past, present and future. They blessed me and gave me courage for the journey. I left the party feeling elated. My life has made a difference. My struggles have not been in vain, my pain has encouraged others who have been in pain. All is not lost.
I believe it is through relationships that we receive our wounds and it is through relationships that we receive our healing. My friends have blessed me and brought healing to my life. They have called forth my beauty; confronted my depravity; reminded me of my dignity and have loved me well. My party reminded me of the power of a well spoken word, the need to speak the truth to each other, the tremendous gift of forgiveness, the value of transparency and how much we need each other as we stumble along on our way home.
Monday, August 25, 2008
Coming To Terms
It's almost midnight and I am exhausted. I arrived home from the hospital last Wednesday. I am so grateful to be free of the confines of four walls. I will be on IV antibiotics for another month along with a nebulized antibiotic and two oral antibiotics. Although the the strain of pseudomonas that I carry is resistant to each of these medicines, they seem to be having a synergistic effect and I am getting better.
I am continually coming to terms with how sick I am. I'm not sure if it's denial. I am aware of the facts: My lung capacity (FEV1) is at 31%. My lungs have lost much of their elasticity due to scar tissue caused by so many infections. I have had 3 lung collapses and statistically will have more. Pneumothoraxes (holes in the lung) can lead to respiratory distress and heart failure. Lung transplantation is not merely a life extending operation, it is life saving. I know the facts yet I still struggle to accept that I am this sick.
I am a survivor, a fighter. I don't know when or how to give up. This has served me well at times. But now I feel tired. The trials of life are wearing me down. I am coming to a place of giving up, letting go.... surrender?!? Didn't I do that already?
I am continually coming to terms with how sick I am. I'm not sure if it's denial. I am aware of the facts: My lung capacity (FEV1) is at 31%. My lungs have lost much of their elasticity due to scar tissue caused by so many infections. I have had 3 lung collapses and statistically will have more. Pneumothoraxes (holes in the lung) can lead to respiratory distress and heart failure. Lung transplantation is not merely a life extending operation, it is life saving. I know the facts yet I still struggle to accept that I am this sick.
I am a survivor, a fighter. I don't know when or how to give up. This has served me well at times. But now I feel tired. The trials of life are wearing me down. I am coming to a place of giving up, letting go.... surrender?!? Didn't I do that already?
Wednesday, August 20, 2008
Waiting
Please indulge me while I put aside my usual sunny demeanor and gripe for a moment - I'm tired of being in the hospital. I'm tired of being sick. I'm tired of the future being unknown. I'm tired of waiting. I'm tired of needing others, of being dependent.
When I get in a funky mood, like the one I am in at the moment, I have learned to sit in it. I used to try to get rid of it through the quickest pleasure seeking, pain numbing method available, this usually involved food of some kind. My weight has fluctuated 100 pounds over the last couple of decades. Now that I am committed to being healthier I look and feel better. The down side is I hurt more, or at least I feel the hurt more. The price of being real.
I have found that music can comfort me. Rich Mullins is one of my favorite song writers. I love this song-
Well, sometimes my life just don't make sense at all
When the mountains look so big And my faith just seems so small
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
And I wake up in the night and feel the dark
It's so hot inside my soul I swear there must be blisters on my heart
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
Surrender don't come natural to me
I'd rather fight You for something I don't really want
Than to take what You give that I need
And I've beat my head against so many walls
Now I'm falling down, I'm falling on my knees
And this Salvation Army band is playing this hymn
And Your grace rings out so deep It makes my resistance seem so thin
I'm singing hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
You have been King of my glory Won't You be my Prince of Peace
When I get in a funky mood, like the one I am in at the moment, I have learned to sit in it. I used to try to get rid of it through the quickest pleasure seeking, pain numbing method available, this usually involved food of some kind. My weight has fluctuated 100 pounds over the last couple of decades. Now that I am committed to being healthier I look and feel better. The down side is I hurt more, or at least I feel the hurt more. The price of being real.
I have found that music can comfort me. Rich Mullins is one of my favorite song writers. I love this song-
Well, sometimes my life just don't make sense at all
When the mountains look so big And my faith just seems so small
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
And I wake up in the night and feel the dark
It's so hot inside my soul I swear there must be blisters on my heart
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
Surrender don't come natural to me
I'd rather fight You for something I don't really want
Than to take what You give that I need
And I've beat my head against so many walls
Now I'm falling down, I'm falling on my knees
And this Salvation Army band is playing this hymn
And Your grace rings out so deep It makes my resistance seem so thin
I'm singing hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
You have been King of my glory Won't You be my Prince of Peace
Sunday, August 17, 2008
hospital update
I want to walk outside before the sun sets. After 5 days in the hospital I am feeling the need to commune with Mother Nature before retiring to room 921 for another night of luxury here at UT hospital, but first, an update.
The doctors took out my chest tube on Friday and my right lung is staying expanded. However, I developed a fever that evening and my oxygen saturation level dropped low. No matter how deep I inhaled I simply could not catch my breath. As panic set in and erased rational thought my nurses (notice they are now, MY nurses, not just the nurses) came to the rescue with calming words and an oxygen catheter. They quickly reassured me that I was not some mad, mutated mermaid slowly drowning while attempting to live underwater. I was safe on dry land.
**Disclaimer- this blog was written while I was under the influence of mild narcotics so read it with a grain of pepper.
The doctors took out my chest tube on Friday and my right lung is staying expanded. However, I developed a fever that evening and my oxygen saturation level dropped low. No matter how deep I inhaled I simply could not catch my breath. As panic set in and erased rational thought my nurses (notice they are now, MY nurses, not just the nurses) came to the rescue with calming words and an oxygen catheter. They quickly reassured me that I was not some mad, mutated mermaid slowly drowning while attempting to live underwater. I was safe on dry land.
**Disclaimer- this blog was written while I was under the influence of mild narcotics so read it with a grain of pepper.
Monday, August 11, 2008
Back to the hospital
Tomorrow morning I'll head back to my home away from home, University of Tennessee hospital. The pneumothorax in my right lung has not healed itself like the doctors had hoped it would. Ironically, the scar tissue is probably helping my lung to not further collapse. I'm hoping to not be in for too long, time will tell.
Thursday, August 7, 2008
Riding the Roller Coaster
Having a chronic disease does have its' benefits. With my handicap pass I usually don't have to hunt for a parking space for very long. Then there is the luxury of being pushed in a wheelchair when everyone else is walking, especially in 90 degree heat, the chair is not so bad. I particularly enjoy being escorted to the front of the line at amusement parks, it's a wonderful perk. Now on most days I do not look sick so when I step out of my van and prance into the store or pop up out of the chair after skipping everyone who has been standing there for an hour I get some mean looks. I don't blame people for their ugliness. They are ignorant of my situation, only aware of their own sense of injustice. It's not fair that I skipped them or that they had to search high and low for a parking place.
My family and I went to Six Flags over Georgia yesterday. We had some free tickets and thought it would be a fun way to end the summer before school starts. While we were there I observed the crazy crowd flying overhead, doing loop-da-loops on the roller coasters. I affectionately refer to them as the screaming idiots. I used to be one of those people. I love a good roller coaster, the bigger, faster, scarier, the better. I loved the feeling of being so excited you scream with delight. Unfortunately now I lose my breath on the rides and have a hard time getting it back until the ride finally ends, by then I am a light shade of blue; still amusing but not so enjoyable.
Amusement park rides help us have controlled adrenaline rushes. Unlike real life we have the thrill of danger while safely buckled into our own little seat. We sit back, secure and comfortable (or as comfortable as you can be flying in the air at 80 miles per hour ) watching the world rush by. I think we all long for the excitement of adventure and the safety of control at the same time. There are times when we all desire that life was like a ride that we could get on and off of, knowing in just a moment the intensity of the unknown will pass and we'll be back safely on the ground. We want life to be predictable and come at us at a steady pace but instead we often feel strapped in and we cannot get off. Sometimes holding on tight and screaming is the best we can do.
An acceptable place to scream...I think this is part of the lure of amusement parks. This is one of the reasons people stand in the hot, miserable heat melting like candle wax for an hour or more to jump on a ride that will last for under 2 minutes. I eagerly anticipate the day when I take on the big rides again, although I will miss going to the front of the line in my wheelchair.
My family and I went to Six Flags over Georgia yesterday. We had some free tickets and thought it would be a fun way to end the summer before school starts. While we were there I observed the crazy crowd flying overhead, doing loop-da-loops on the roller coasters. I affectionately refer to them as the screaming idiots. I used to be one of those people. I love a good roller coaster, the bigger, faster, scarier, the better. I loved the feeling of being so excited you scream with delight. Unfortunately now I lose my breath on the rides and have a hard time getting it back until the ride finally ends, by then I am a light shade of blue; still amusing but not so enjoyable.
Amusement park rides help us have controlled adrenaline rushes. Unlike real life we have the thrill of danger while safely buckled into our own little seat. We sit back, secure and comfortable (or as comfortable as you can be flying in the air at 80 miles per hour ) watching the world rush by. I think we all long for the excitement of adventure and the safety of control at the same time. There are times when we all desire that life was like a ride that we could get on and off of, knowing in just a moment the intensity of the unknown will pass and we'll be back safely on the ground. We want life to be predictable and come at us at a steady pace but instead we often feel strapped in and we cannot get off. Sometimes holding on tight and screaming is the best we can do.
An acceptable place to scream...I think this is part of the lure of amusement parks. This is one of the reasons people stand in the hot, miserable heat melting like candle wax for an hour or more to jump on a ride that will last for under 2 minutes. I eagerly anticipate the day when I take on the big rides again, although I will miss going to the front of the line in my wheelchair.
Saturday, August 2, 2008
Heading home
My vacation is ending. Soon I will be returning home to my little house in the woods. The past two weeks have been glorious. I have been surrounded by family and friends. I have reconnected with people that I haven't seen for years. I have been reminded how God has been faithful to me. I am still absorbing all that the past two weeks have meant. I think it may take awhile to feel the full impact. I walk away with a feeling of being incredibly blessed. My friends have once again, done for me what I can not do for myself. The birthday celebration raised over $2000 with another $5000 in pledges. However, what means more to me then the money is the sense of support that I experienced. I am not alone. I do not have to walk alone. God has provided for me through people. He has reminded me of His goodness through the love of my brothers and sisters. I am amazed at the healing power of being loved well.
Friday, July 18, 2008
Heading Down the Road
It is finally time for my long anticipated vacation. Today I will travel from North Carolina to Pennsylvania. I like to travel by myself, the conversation is good. I spend time talking to myself, talking to God, talking on the phone. I have to consult my map often because it is easy for me to get into a groove and just keep going not paying attention to details like turning. For me "lost" is just a word that describes an unscheduled adventure.
For the past several years I have been on the road to transplant. I've known for a while that some day I will need new lungs. It's always been looming in the the future. I've rationalized that with each hospitalization I was a little closer. I have anticipated there will come a time that I will slow down more; that some day I will need oxygen to exercise then some day I will need oxygen to breathe. I have anticipated a gradual decline slowly leading into transplant. Someday.
Since I am feeling fairly healthy and not on oxygen I was not anticipating what the Duke Doctors told me yesterday. Apparently, pneumothoraxes (holes in the lungs) are red flags that expedite the transplant process. The more you have, the more you are likely to have. My x-ray showed another pneumo on my right side. Fortunately this one is relatively small so no chest tubes. They used strong words to describe the possibilities, words like respiratory distress that could lead to expiration. I always thought that was a funny way of describing death, like some cold cut that has gone bad. ("OK, You're time is up, out of the fridge.")
The transplant team is meeting this week and they will review my case. Given my recent challenges it seems that transplant could be closer then I had been thinking; it could become real, not just some far off destination. Someday it will come and when it does I will rise to the occasion. However, today I will live in the power and peace of the moment. Today all I have to do is enjoy the road I'm on now. So I'm off to enjoy my vacation, wonder what adventures I'll find.
For the past several years I have been on the road to transplant. I've known for a while that some day I will need new lungs. It's always been looming in the the future. I've rationalized that with each hospitalization I was a little closer. I have anticipated there will come a time that I will slow down more; that some day I will need oxygen to exercise then some day I will need oxygen to breathe. I have anticipated a gradual decline slowly leading into transplant. Someday.
Since I am feeling fairly healthy and not on oxygen I was not anticipating what the Duke Doctors told me yesterday. Apparently, pneumothoraxes (holes in the lungs) are red flags that expedite the transplant process. The more you have, the more you are likely to have. My x-ray showed another pneumo on my right side. Fortunately this one is relatively small so no chest tubes. They used strong words to describe the possibilities, words like respiratory distress that could lead to expiration. I always thought that was a funny way of describing death, like some cold cut that has gone bad. ("OK, You're time is up, out of the fridge.")
The transplant team is meeting this week and they will review my case. Given my recent challenges it seems that transplant could be closer then I had been thinking; it could become real, not just some far off destination. Someday it will come and when it does I will rise to the occasion. However, today I will live in the power and peace of the moment. Today all I have to do is enjoy the road I'm on now. So I'm off to enjoy my vacation, wonder what adventures I'll find.
Wednesday, July 16, 2008
Anticipation
Remember the old Heinz 57 commercial showing the juicy hamburger just waiting for one drop of ketchup to drip off the bottle. In the background Carly Simon sang about how anticipation is making her wait but of course the ketchup is too rich and thick to plop out. The next scene is just a perfect hamburger with a perfectly round circle of ketchup. You never see where the scene where the ketchup user is hitting the bottom of the bottle talking to the ketchup trying to convince it to come out. Then when that does not work he gets the old butter knife out and pulls the red, glue-like substance out in big, gooey glops. No, all you see is the end result, a perfectly round ring of ketchup on a perfect burger just waiting to be devoured.
Often when I am waiting the song often comes back to me. (ah, the power of media, that commercial was on TV at least 20 years ago.) This morning I am waiting to go to Duke Medical Center. I have appointments through out today and tomorrow. I was scheduled to go for a routine review at the end of this month but now, with the recent lung collapse, they want to see me earlier. I don't like going there. They see me as a patient, they think I am sick. I do not always acknowledge how sick I am until reality smacks me in the face again and I cannot turn away. Today I am forced to face my sickness, to talk about transplant, to anticipate the future.
Often when I am waiting the song often comes back to me. (ah, the power of media, that commercial was on TV at least 20 years ago.) This morning I am waiting to go to Duke Medical Center. I have appointments through out today and tomorrow. I was scheduled to go for a routine review at the end of this month but now, with the recent lung collapse, they want to see me earlier. I don't like going there. They see me as a patient, they think I am sick. I do not always acknowledge how sick I am until reality smacks me in the face again and I cannot turn away. Today I am forced to face my sickness, to talk about transplant, to anticipate the future.
Thursday, July 10, 2008
Coming home
I watched the sunset tonight. I was outside, breathing wonderful, humid, air. I drove in a car today. The world seems so busy, everyone with an agenda, rushing by, busy to go somewhere. Most unaware of the moment because it melts into all the other moments in the chorus of a day.
After nearly two weeks in the hospital the sunset was gloriously beautiful, not to be taken for granted but to be savored. I am free of the tube in my side, free of my IV line dripping relief for my pain, free of the confines of four walls, free of watching the world go by from the view of my ninth story window. I am free to live in the moment, knowing that I am safe, I am healthy (relatively speaking), I am at peace.
After nearly two weeks in the hospital the sunset was gloriously beautiful, not to be taken for granted but to be savored. I am free of the tube in my side, free of my IV line dripping relief for my pain, free of the confines of four walls, free of watching the world go by from the view of my ninth story window. I am free to live in the moment, knowing that I am safe, I am healthy (relatively speaking), I am at peace.
Friday, July 4, 2008
My birthday
I have a wonderful problem, it's really quite a delightful dilemma. Today is my birthday. I am forty years old. There have been plenty of times that I wondered if I would live to be this old. The last ten years have been especially challenging. I shifted from having a disease that served as a footnote in my life to a disease that orchestrates my daily routine, dictating my schedule, what I can do and what I can't do.
I was diagnosed with Cystic Fibrosis when I was eighteen months old. At the time the doctors told my parents I would be fortunate to live to be eighteen. Much has changed since then , early diagnosis and better treatment means someone born today with the disease will live an average of thirty-four years. I am forty years old! I made it to the next decade. I am blessed.
I am plagued with a question. Why me? Why am I fortunate enough to live while others with the disease fight harder and live shorter lives, many dying before reaching adulthood. I do not know the answer. However the inquiry leaves me with a hyper awareness that our lives are not to be taken for granted, each day is a gift bestowed on us by the author of life and death.
The problem I spoke of earlier involves a lack of planning. I never pictured myself living this long. It felt a little presumptuous to think I could live to be forty. Even now, the idea of being this old is settling in. I'm thrilled to be here, quite curious to see what the next chapter of my book will look like.
I was diagnosed with Cystic Fibrosis when I was eighteen months old. At the time the doctors told my parents I would be fortunate to live to be eighteen. Much has changed since then , early diagnosis and better treatment means someone born today with the disease will live an average of thirty-four years. I am forty years old! I made it to the next decade. I am blessed.
I am plagued with a question. Why me? Why am I fortunate enough to live while others with the disease fight harder and live shorter lives, many dying before reaching adulthood. I do not know the answer. However the inquiry leaves me with a hyper awareness that our lives are not to be taken for granted, each day is a gift bestowed on us by the author of life and death.
The problem I spoke of earlier involves a lack of planning. I never pictured myself living this long. It felt a little presumptuous to think I could live to be forty. Even now, the idea of being this old is settling in. I'm thrilled to be here, quite curious to see what the next chapter of my book will look like.
Thursday, July 3, 2008
The pain of truth
It's nightfall, the end of another long day. I'm waiting for the nurse to bring me a shot of morphine. Today they took out the chest tube only to insert a bigger one. They hope this new and improved, super size straw will adequately suck the air out of my chest cavity so my lung can expand again.
The nurse is exiting my room now. I feel the bliss of relief as the drug blocks my pain telling my brain all is well in my body. I will rest in this falsehood and slumber until the lie wears off and the truth prevails once again.
The nurse is exiting my room now. I feel the bliss of relief as the drug blocks my pain telling my brain all is well in my body. I will rest in this falsehood and slumber until the lie wears off and the truth prevails once again.
Wednesday, July 2, 2008
Stuck in the hospital
I hate the feeling of being stuck. I'm in the hospital now. The doctor's discovered that my left lung has collapsed. Silly me, I thought I was just having some back spasms. I'm extremely frustrated because I've worked hard at staying healthy this summer. I go to pulmonary rehab twice each week. I just biked seven miles on my exercycle. I am actually feeling pretty darn good which makes being in the hospital all the more challenging. I want to go home. I want to hang out with my friends who are vacationing at my house. We've been planning our camping trip to Cades Cove since February. Today they will go without me because I am trapped here.
Picture quick sand that sucks you down, the more you wrestle, the deeper into the mire you sink. Here is a survivor's tip for the day- if you're ever trapped in quick sand, to escape you must relax. It's true, check your boy scout guide. To get out of the pit it is best to lay back as if you are floating and thus redistribute your body weight until you are resting on the surface of the muck, only in this position of surrender can you make any real progress in your attempt to get free. I know this to be true about the hospital as well or any situation where we have no control.
Think about it, the things that matter most are the things we have the least control over- our health, our future, our relationships (ever try to control someone else? not a pretty sight). All our striving, all our effort to make life work for us, most of it is far beyond our control. I've spent the last twenty-four hours crying, longing to be released from my current predicament. I've cursed, I've screamed, I've hit the pillows, I've prayed, nothing changes, I'm still here. Today the best I can hope for is to relax in the moment, kick up my heels and float along. Perhaps I can get hold of some good narcotics while I'm here, that might help.
Picture quick sand that sucks you down, the more you wrestle, the deeper into the mire you sink. Here is a survivor's tip for the day- if you're ever trapped in quick sand, to escape you must relax. It's true, check your boy scout guide. To get out of the pit it is best to lay back as if you are floating and thus redistribute your body weight until you are resting on the surface of the muck, only in this position of surrender can you make any real progress in your attempt to get free. I know this to be true about the hospital as well or any situation where we have no control.
Think about it, the things that matter most are the things we have the least control over- our health, our future, our relationships (ever try to control someone else? not a pretty sight). All our striving, all our effort to make life work for us, most of it is far beyond our control. I've spent the last twenty-four hours crying, longing to be released from my current predicament. I've cursed, I've screamed, I've hit the pillows, I've prayed, nothing changes, I'm still here. Today the best I can hope for is to relax in the moment, kick up my heels and float along. Perhaps I can get hold of some good narcotics while I'm here, that might help.
Tuesday, June 24, 2008
Post Vacation Blues and the rhythym of life
I am a person who finds that the rhythm of my life is set at a pace faster then many are comfortable with. I like to be on the go. I enjoy connecting with people. That's probrably why I love vacations. I enjoy the bittersweetness of knowing you have a limited amount of time to connect with people so you schedule your visits with purpose. Breakfasts brunches getting reacquainted with old friends, dinners rich with conversations of catching up and reminiscing, late night coffees full of laughter and playful banter that comes with the familiarity of knowing people for a long time and discovering with joy who they are today.
I am suffering from PVB, Post Vacation Blues. We arrived home this morning around five. The cats, Princess and Prancer, were our welcoming committee. They were glad to see us. I was exhausted. I fell into bed thankful to be home, ready to rest and regroup.....until next time.
I am suffering from PVB, Post Vacation Blues. We arrived home this morning around five. The cats, Princess and Prancer, were our welcoming committee. They were glad to see us. I was exhausted. I fell into bed thankful to be home, ready to rest and regroup.....until next time.
Friday, June 13, 2008
Sunrise verses Sunset
It's just after 6am. I've been up since 4:30, maybe earlier since I laid in bed for a while. I took a walk along the Chesapeake Bay. I watched the sunrise; a huge, fiery ball of orange coming from the Eastern horizon. It was magnificent, beautiful and in my opinion, a bit overrated. Perhaps because I am so not a morning person, perhaps because I am more of a reflector of events then a planner of events or perhaps it's just too early to think, irregardless, I do not see what all the hoopla about sunrises are about. I prefer the sunsets, the golden hour rounding out the flurry of the day, gently beckoning us into night fall and rest.
Today will be a good day. I'm on vacation and now is the time to go back to bed.
Today will be a good day. I'm on vacation and now is the time to go back to bed.
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