Today my grandma Olivia was laid to rest, after 98great years. The matriarch of a family of 13children, 60+ grandchildren, and over 100 great-grandchildren. Now that is an accomplishment. Miss and love you always, there is no way to fill voids, except to remember the things you love about the person, and hope that you can learn and lead by example the way she did her life. No judgements, no foul words, and no ungratefulness.
I have seen the passing of my last grandparent, and not able to attend her funeral. Yet able to via today's technology a live feed, not the same but I was so happy to be viewing I can't explain. Grandparents are a foundation for our future, from them comes down the generations, strength, hard work, dedication and perseverance. What we do with that is our choice but we are a reflection of them. I was blessed with my grandparents, they were good people, made of strength of character, and did what hey needed to to give their family a life and food on their plates.
As I walk this life journey I like to think some of my strength comes from them, but feel as though I can never be truly to their caliber, if I was, I wouldn't cry and complain and beg God each day to bring me lungs. I also feel it shows my weakness and for that God pushes me back another day. My faith is not as strong as theirs either, I like to think it is but I like to believe that God will help me in my deepest despair, here I am on the precipice and I can't find him with help. I know he's here I just can't locate him. For all the struggling gramma Henrietta had she never wavered from God in all her years. Olivia in all her health scares of hers and the children I am sure she never wavered. I would like them all up their in heaven to send down me their strength and let me know God the way they knew God so I can have the strength I need for this journey. I am teetering on breakdown mode with no help in sight.
I've made it to the bargaining portion of acceptance and it isn't pretty. Problem is I don't know what to bargain with because God holds all the chips.
- Posted using BlogPress from my iPad
Monday, September 19, 2011
Monday, September 5, 2011
Labor day
So, on day 97, I would like to write about all the people who I have meet in these last nearly one hundred days who's names I will someday forget or faces will fade from my mind but who presence has made a lasting impression on this life of mine.
You know when people say "deja vu", I have had that many times since being here. So, my theory is that I am here once again trying to do something different this time around, which is my typical reaction to deja vu, but my new theory is that these people I meet were Always meant to be part of my life and each one touching a different part of my needs. By needs I mean, caregivers, lifesavers, friends, artistic inspirations, spiritual guides, and more. I have learned that I can't change my past but I don't have to because the present is providing me with enough to guide a greater future. Because some of the people that have touched my life more than any are the ones I haven't or never will I meet.
To George, someone who I have met twice. You have left a mark on my heart, I wish you the longest life with your new lungs. The fact that My name was some of the first words written when you awoke from surgery is touching. I think you might have been wanting me to know how awesome it is to breathe. That for as little as we have known of each other a bond is formed. Thank you George.
Life is nothing without people making a difference, or rather making a presence, physically or from afar. Even if I knew you before day 1.
You are one of those who's made a difference in my life, yes you!
- Posted using BlogPress from my iPad
You know when people say "deja vu", I have had that many times since being here. So, my theory is that I am here once again trying to do something different this time around, which is my typical reaction to deja vu, but my new theory is that these people I meet were Always meant to be part of my life and each one touching a different part of my needs. By needs I mean, caregivers, lifesavers, friends, artistic inspirations, spiritual guides, and more. I have learned that I can't change my past but I don't have to because the present is providing me with enough to guide a greater future. Because some of the people that have touched my life more than any are the ones I haven't or never will I meet.
To George, someone who I have met twice. You have left a mark on my heart, I wish you the longest life with your new lungs. The fact that My name was some of the first words written when you awoke from surgery is touching. I think you might have been wanting me to know how awesome it is to breathe. That for as little as we have known of each other a bond is formed. Thank you George.
Life is nothing without people making a difference, or rather making a presence, physically or from afar. Even if I knew you before day 1.
You are one of those who's made a difference in my life, yes you!
- Posted using BlogPress from my iPad
Location:Mb 6650
Monday, August 22, 2011
"good"
Sometimes brutal honesty is hard. It's always easy to say "good" when someone asks how you feel. Truth be told right now I am not sure I could find a lower point in life as I wait for what could potentially be the best days yet to come but truth is this sucks.
Never one to take compliments well, as though I am unworthy of such well doing. But I have had more people tell me how inspirational I am, and inside I feel like somehow I am fooling them all with my mock cheeriness. Thing is I think they see the truth I don't but for different reasons. I am just too damn stubborn to quit and frankly I am pissed, I don't want to play this game, or fight this fight, but the images of the people I love float through my mind one by one and those images remind me why I fight this, I want more time with them. Simply put nothing is more important on this earth than them. That's why I continue on and don't have the heart to say I can't go on. Not to sound big headed but I know just as much if I lost one of them that losing me would create a emptiness and all our beautiful memories would lie in there only to stop every so often to pull out one of those memories and smile with a glint of tear, because those are sweet memories. I am not ready to be a memory, I am ready to add more to the photo album of life.
I guess in the midst of your biggest life struggle that you can be an inspiration and not even realize it. And it's being an inspiration to people you would never know. Saddest part is its easy to be a silent struggler but put on the face of a warrior, just so people don't see your real pain. That's what I have always done and yet maybe not as well as I think I did.
So, as I struggle another day between the silence of life on a vent and trying to stay afloat on just oxygen, I find another day floating by. Another day to drag myself from bed to chair, from chair to walking on a vent, to riding a bike. I find that each day is as hard as the last and easier than the day yet to come. I can only believe some force greater than me is driving this body because I am tired, bone tired. And if I had the strength I would say I am done, but I guess fighting hard is easier than doing nothing at all.
- Posted using BlogPress from my iPad
Never one to take compliments well, as though I am unworthy of such well doing. But I have had more people tell me how inspirational I am, and inside I feel like somehow I am fooling them all with my mock cheeriness. Thing is I think they see the truth I don't but for different reasons. I am just too damn stubborn to quit and frankly I am pissed, I don't want to play this game, or fight this fight, but the images of the people I love float through my mind one by one and those images remind me why I fight this, I want more time with them. Simply put nothing is more important on this earth than them. That's why I continue on and don't have the heart to say I can't go on. Not to sound big headed but I know just as much if I lost one of them that losing me would create a emptiness and all our beautiful memories would lie in there only to stop every so often to pull out one of those memories and smile with a glint of tear, because those are sweet memories. I am not ready to be a memory, I am ready to add more to the photo album of life.
I guess in the midst of your biggest life struggle that you can be an inspiration and not even realize it. And it's being an inspiration to people you would never know. Saddest part is its easy to be a silent struggler but put on the face of a warrior, just so people don't see your real pain. That's what I have always done and yet maybe not as well as I think I did.
So, as I struggle another day between the silence of life on a vent and trying to stay afloat on just oxygen, I find another day floating by. Another day to drag myself from bed to chair, from chair to walking on a vent, to riding a bike. I find that each day is as hard as the last and easier than the day yet to come. I can only believe some force greater than me is driving this body because I am tired, bone tired. And if I had the strength I would say I am done, but I guess fighting hard is easier than doing nothing at all.
- Posted using BlogPress from my iPad
Tuesday, August 2, 2011
A Match!
Sarah got the call this evening. She has been telling everyone that August 2nd was the day her lungs would come.
She was right.
Now it is just a matter of the docs checking them out and making sure they are acceptable. Then on to surgery. Big night, big changes. I'll post more when I can.
She was right.
Now it is just a matter of the docs checking them out and making sure they are acceptable. Then on to surgery. Big night, big changes. I'll post more when I can.
Friday, July 22, 2011
My new home...
After a lengthy absence from this site, I have decided to see what thoughts I might be able to share today. This could be long or short depends on my typing and how much I really have to say.
I have been in the hospital since June 1st, and looking back the time has flown by. Although there are many days that crept along and wished the night would come. I never expected on June 1 that my life would lead me here. I guess I thought I would be one of those lucky CFers that would get the call for new lungs while they were basking at home with their rotten lungs. Although I told my nurse that I would have been very upset had I know this was coming.I don't remember the day but I think it was June 14, I had a terrible night of no sleep for the 14th day in a row. I had asked Chris to spend the night because I kept feeling like I couldn't breathe. that morning I woke up for therapy and suddenly my oxygen plummeted, in a matter of minutes I was sidled to the ICU, and from there my memory gets fuzzy. My carbon dioxide had reached an level that was requiring help to bring it back down. But my memory is more of lights and whispers, dark amber glowing lights and waking to find my Dad or brother or husband at my side. What I forgot to mention was that just that seeing them was beauty because just a day or two before I told them all goodbye. I didn't know what entirely was happening but I knew it was important to share my love. To my surprise I made it and to be honest.
Most days are the same, I spend them doing therapy, eating, exercising, doctors visiting, and napping on the ventilator to regulate my CO2. My days are never the same and my nights are never the same either, lack of sleep is one of my problems as is anxiety with each day from staff changes to my feeling good or bad that day.
I am learning to do small things related to my trachea, like changing the cushion, coughing through the hole in my throat, and being extra hands during suction.
I wish these days were consistently easy, and I would feel good from morning to night but it just doesn't happen. More so I wish these new happy lungs would arrive.
I have been in the hospital since June 1st, and looking back the time has flown by. Although there are many days that crept along and wished the night would come. I never expected on June 1 that my life would lead me here. I guess I thought I would be one of those lucky CFers that would get the call for new lungs while they were basking at home with their rotten lungs. Although I told my nurse that I would have been very upset had I know this was coming.I don't remember the day but I think it was June 14, I had a terrible night of no sleep for the 14th day in a row. I had asked Chris to spend the night because I kept feeling like I couldn't breathe. that morning I woke up for therapy and suddenly my oxygen plummeted, in a matter of minutes I was sidled to the ICU, and from there my memory gets fuzzy. My carbon dioxide had reached an level that was requiring help to bring it back down. But my memory is more of lights and whispers, dark amber glowing lights and waking to find my Dad or brother or husband at my side. What I forgot to mention was that just that seeing them was beauty because just a day or two before I told them all goodbye. I didn't know what entirely was happening but I knew it was important to share my love. To my surprise I made it and to be honest.
Most days are the same, I spend them doing therapy, eating, exercising, doctors visiting, and napping on the ventilator to regulate my CO2. My days are never the same and my nights are never the same either, lack of sleep is one of my problems as is anxiety with each day from staff changes to my feeling good or bad that day.
I am learning to do small things related to my trachea, like changing the cushion, coughing through the hole in my throat, and being extra hands during suction.
I wish these days were consistently easy, and I would feel good from morning to night but it just doesn't happen. More so I wish these new happy lungs would arrive.
Tuesday, July 19, 2011
Finally, another update!
A seven-year old's birthday party, a used car purchase, and visitors from a far away land have all conspired to create a whirlwind and whisk away a week. I arrived back down in Rochester yesterday to re-assume my courtside seats and was greeted by someone who looked another shade closer to the "healthy" Sarah. I know it is a long slow climb, and she has had frustrations and setbacks, but she has steadily moved up that hill to a better place. She is walking short distances without a walker, and last night she walked a very long distance pushing the wheelchair before she had to hop in and let me race her around the hospital.
She did receive some less than fantastic news about the length of time she might expect to wait. Her CF doc was in yesterday, and he has been gone for a while on vacation. She has developed a rapport with him over the years and felt more comfortable asking many of the questions that were preying on her mind. He outlined that she might be waiting some time before the lungs show up. The original timeframe we were told, (3 minutes to 3 weeks!) is really not accurate. She is looking at 3-6 months, with the understanding the match could truly come at any time. It takes some time to recalibrate your mind around that big of a change-- and to realize the room you're in is going to be "yours" for a while. Sarah took the news well and I think is trying to craft her approach to the wait.
She is trying to spend time down the hall at the atrium, exploring places at St. Mary's and she will even (eventually!) be able to go across the street to the Honker for a real dinner out. Her doc has recommended that she start to take charge of her room and her care, moreso than she has so far. I have seen many changes in her activities in just the week that I have been gone. She showers without assistance, walks across the room to grab her pj's, transfers her oxygen lead to the tank to walk, and a dozen little things that last week she couldn't do on her own.
Unlike many patients in the hospital, she does much of her own care. She is hesitant to usurp too much from the nurses and respiratory techs, but as she feels better she will need to take on more of the components she traditionally did at home. This will help her not always be waiting for someone to do her basic vest and nebulizer therapy. She is hesitant to rock the boat as she doesn't want to agitate the people she depends on for so much, especially the respiratory techs. But too often she is the one agitated as each tech who comes in has a different approach and she spends as much time helping some of them understand how to do her meds and therapy as it would take for her to do it herself. This can be repeated with each shift change. (This is not to say anything bad about the techs, as they are just not as familiar with CF patients-- as many of them don't live long enough to be frequent visitors)
Sarah is getting stronger. She is preparing herself for a long wait. Let's hope it is the shorter end of the spectrum.
She did receive some less than fantastic news about the length of time she might expect to wait. Her CF doc was in yesterday, and he has been gone for a while on vacation. She has developed a rapport with him over the years and felt more comfortable asking many of the questions that were preying on her mind. He outlined that she might be waiting some time before the lungs show up. The original timeframe we were told, (3 minutes to 3 weeks!) is really not accurate. She is looking at 3-6 months, with the understanding the match could truly come at any time. It takes some time to recalibrate your mind around that big of a change-- and to realize the room you're in is going to be "yours" for a while. Sarah took the news well and I think is trying to craft her approach to the wait.
She is trying to spend time down the hall at the atrium, exploring places at St. Mary's and she will even (eventually!) be able to go across the street to the Honker for a real dinner out. Her doc has recommended that she start to take charge of her room and her care, moreso than she has so far. I have seen many changes in her activities in just the week that I have been gone. She showers without assistance, walks across the room to grab her pj's, transfers her oxygen lead to the tank to walk, and a dozen little things that last week she couldn't do on her own.
Unlike many patients in the hospital, she does much of her own care. She is hesitant to usurp too much from the nurses and respiratory techs, but as she feels better she will need to take on more of the components she traditionally did at home. This will help her not always be waiting for someone to do her basic vest and nebulizer therapy. She is hesitant to rock the boat as she doesn't want to agitate the people she depends on for so much, especially the respiratory techs. But too often she is the one agitated as each tech who comes in has a different approach and she spends as much time helping some of them understand how to do her meds and therapy as it would take for her to do it herself. This can be repeated with each shift change. (This is not to say anything bad about the techs, as they are just not as familiar with CF patients-- as many of them don't live long enough to be frequent visitors)
Sarah is getting stronger. She is preparing herself for a long wait. Let's hope it is the shorter end of the spectrum.
Eating Out for Dinner
Posted Jul 12, 2011 9:39am
Back in Mpls and derelict in my duties. Sarah has had a few days with more ups than downs. She ate dinner with my parents out in the 'Atrium' just down the hall from her room. Dining out! She managed to walk half way to the large waiting room with huge windows that overlooks the main entry and out to the west. I think it was a motivator, because she has headed that way a few times now, making it most of the way there on her own power.
The other CF patient on the floor suffered some setbacks and I think it made Sarah realize that is is doing better than she thought. I'm sure it is somewhat strange to know someone is suffering in a similar unique way: unable to communicate on the vent, choking during the suction, struggling with each breath, and just trying to hold on until the lungs arrive.
We found out that it is likely that size of lungs will play a large role in the amount of time Sarah will need to wait. We knew it would play a role, but not sure how much. Because she is smaller in size, it will be necessary that her donor be smaller as well. While this helps us understand the checklist of things that must align, it can still be 5 minutes or 5 weeks.
But for now she is holding steady!
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