I love Kung Fu Panda. Mostly I love Jack Black as Po, he does a fabulous job creating this sweet lovable character with just his voice. Po has no hope of becoming the Dragon Warrior but finds himself the chosen one.
In the beginning of the movie we see Po working so hard to climb the steps to reach the location of the Dragon Warrior selection. Huffing and puffing he makes his way up the stairs, but gets there only to find the doors have been closed and the concrete walls are impenetrable. This is that spot at which I realized I am in the same place that Po is. No, I am not trying to become a Warrior, I am just trying to see over the wall. I have climbed and climbed these stairs of my life and huffed and puffed along the way winded and bedraggled I have reached the wall with little energy to make my way over to see what is on the other side. All I want is to see the other side, to see what wonders lie ahead.
I have spent the last five days fighting a stupid head cold, which is ugly and irritating in itself but I woke up Wednesday and to add insult injury I had the worst lung bleed I have had in the last three or more years. So bad that I panicked and call, who else 'Mom'. Chris was already at work. I had no warning no sense of this happening it just came out of no where, just like when you bend over and a blood nose starts. Same thing. So, I spent my whole darn day at the clinic waiting for CT results.The results, were...nothing new. I had no active bleed, the one in the morning stopped after about five minutes of coughing fits and hadn't returned. That is good news, but I was given strict orders, due to my head cold (from being to close to the kiddos), to keep my distance from my nieces and nephews the most awful thing I can ever imagine doing is not kissing there little necks and so soft, unblemished skin.
Here begins my journey, post transplant life is already starting to work it's way into today's life. Post transplant the doc feels my biggest challenge will be keeping away from the kids. Masks will be the new norm. I guess of all the things I will be sad to give up with the transplant will be loving up the kids. Not touching their skin to my lips sounds like the ultimate punishment. But, yet the reward is that I get to spend many more years with them, and that means a lot.
Transplant is my wall just like the wall that Po has in front of him, he is desperate to get to the other side to enjoy, see, and experience all the festivities with the others. I am desperate to see my life on the other side of the wall, the land of transplant. What will it be like? How will I be different? How will I be the same? How will I view life? Will I ever stop waiting for the next bad thing to happen? The hardest part of life is the not knowing. Once Po reached the other side of the wall he found what he dreamed of. I hope that I will find a wonderful life, one I never dreamed could exist for me but with all the things that make my current life full.
Skadoosh!
Saturday, May 14, 2011
Wednesday, May 11, 2011
Minnesota
I love Minnesota, I think it is a beautiful state and it has a lot to offer. But for crying out loud our weather sucks. We spend all of April cold and rainy and the first part of May, then wham a day of hot and humid.
The longer I live the more I dislike winter. I get cold very easily and can't warm up, going outside just makes me anxious. Too many layers the jacket and then carrying a purse or bag (for oxygen) when I can never seem to find my shoulders to actually hold things on. And with so many layers I can't bend down and I always feel constricted to move. I go out at night just to go shopping or something and I shiver so bad I want to throw up. So, no, winter isn't my favorite season and I wait, wait, wait for warm spring and summer.
It seems though we can't actually have a spring this year, we went from winter into some season that really should have it's own name (miserable maybe). Then a slap in the face of the heat and humidity of a typical MN summer day in the middle of July. I found myself yesterday equally as uncomfortable in yesterdays heat as I do in the middle of -10 degree day in January. I was so hot, I couldn't hardly do anything but sit still, on top of that I woke up with a head cold yesterday and that always makes me feel clammy. So, even though I was looking forward to some heat, I have to say, yesterday was not what I was wanted.
Now, had our air conditioner been hooked up, the day might have turned a little different. But when our furnace went out and was replaced in January, the AC was disconnected. So, on the coldest day in January we lost our heat, and yesterday on the hottest day in May we have no AC. It was 86 in our house and all windows and three fans did their best to keep us cool. The place that gave us respite was the basement, it had to be at least 25 degrees cooler down there. If only there was a bed down there, how nice that would have been.
So, I guess it comes down to no matter what the weather is I will complain. I really just would like 80 with a slight breeze and sunny. Seriously, is that too much to ask for? Oh, wait, it is because this is Minnesota and there really are only two season: frigid cold and humid hot.
The longer I live the more I dislike winter. I get cold very easily and can't warm up, going outside just makes me anxious. Too many layers the jacket and then carrying a purse or bag (for oxygen) when I can never seem to find my shoulders to actually hold things on. And with so many layers I can't bend down and I always feel constricted to move. I go out at night just to go shopping or something and I shiver so bad I want to throw up. So, no, winter isn't my favorite season and I wait, wait, wait for warm spring and summer.
It seems though we can't actually have a spring this year, we went from winter into some season that really should have it's own name (miserable maybe). Then a slap in the face of the heat and humidity of a typical MN summer day in the middle of July. I found myself yesterday equally as uncomfortable in yesterdays heat as I do in the middle of -10 degree day in January. I was so hot, I couldn't hardly do anything but sit still, on top of that I woke up with a head cold yesterday and that always makes me feel clammy. So, even though I was looking forward to some heat, I have to say, yesterday was not what I was wanted.
Now, had our air conditioner been hooked up, the day might have turned a little different. But when our furnace went out and was replaced in January, the AC was disconnected. So, on the coldest day in January we lost our heat, and yesterday on the hottest day in May we have no AC. It was 86 in our house and all windows and three fans did their best to keep us cool. The place that gave us respite was the basement, it had to be at least 25 degrees cooler down there. If only there was a bed down there, how nice that would have been.
So, I guess it comes down to no matter what the weather is I will complain. I really just would like 80 with a slight breeze and sunny. Seriously, is that too much to ask for? Oh, wait, it is because this is Minnesota and there really are only two season: frigid cold and humid hot.
Friday, May 6, 2011
Loving Friday
Went back to the chiropractor for my third visit to day, regarding my hip issue. It was a quick appointment but it yielded wonderful results. I did notice when she cracked my back how easily the spine cracked and it just sounds like a stick on a fence, brrrrupp. What an awesome feeling but it wasn't that that excited me as much as my hip popping. She has pulled that left leg each visit and it was tight as can be but today she pulled and this loud POP rang out and I went, 'ahh, did you hear that', I think she must get that everyday from people. I have waited years to feel that relief. Oh, it is like christmas and birthday all rolled into one. Who knew something so simple could make ones day so much better.
Anyway, next week I go for a massage to work out these awful knots in my back - wonder what difference that will make. I can only imagine.
I am off to keep picking up clutter in the house as we have company this weekend for the CF walk. We are already at a record, for us, $2,000+. I am overwhelmed by the generosity and support of people. There are a lot of great people out there, just too bad that all the negative ones get the attention.
Thanks everyone!
Anyway, next week I go for a massage to work out these awful knots in my back - wonder what difference that will make. I can only imagine.
I am off to keep picking up clutter in the house as we have company this weekend for the CF walk. We are already at a record, for us, $2,000+. I am overwhelmed by the generosity and support of people. There are a lot of great people out there, just too bad that all the negative ones get the attention.
Thanks everyone!
Tuesday, May 3, 2011
My crazy Hawaiian vacation
I had the same dream last night that I have had repeatedly over the last three or four years. I don't know what triggers it, and even though the story is the same basically, I am in a different place. I have this dream that I am either trying to fly to Hawaii, or I have already made it to Hawaii. But in the case such as last night and tends to occur everytime I have this dream I get there and I realize I have no medicine, no therapy vest, and now no oxygen (that's new). I also couldn't find my luggage on the carousel from the airplane, so now I am in Hawaii with nothing but the clothes on my back. Funny enough I can breath just fine even though I am not wearing oxygen, and yet apparently I supposedly have three oxygen tanks with me but I am not sure how I got them there. Three tanks will only last me about nine hours and I rationalize this in my dream.
I have had this same dream but instead of making it to Hawaii I get stuck at the airport realizing once again I forgot my vest at home. For crying out loud, after having this same dream how many times don't you think I would learn to travel with all my stuff packed?
It really isn't new for me to have dreams over time that are essentially the same each time. I also have the re-occuring house dream. That I started getting when we were trying to sell our house, that one still revisits me, different house, same people. I also use to have the can't find a bathroom dream, where the only bathroom I can find is in front of everyone and the ones that are private are broken or just plain weird. Or the locker dream, of not remembering my combination. I would guess somewhere in all those dreams there is probably a thread, something that ties them all together - or maybe not. Maybe each one of them ties themselves to something different in my life. I always think that I decipher these dreams too easily. Such as the idea that being able to travel with all my 'tag-a-longs' is something I can't comprehend. I will always be tethered to something and will never be free to do things without having a sense of obligation.
Whatever the case maybe, I realize I would like to go back to Hawaii, now 23 years since we last visited. But I really don't want to go if I feel overwhelmed like I do in my dreams, it is to be, pretty, warm, and peaceful. So, who knows maybe someday I will get back there, but without the oxygen, vest, or inhaled paraphernalia. One never knows.
I have had this same dream but instead of making it to Hawaii I get stuck at the airport realizing once again I forgot my vest at home. For crying out loud, after having this same dream how many times don't you think I would learn to travel with all my stuff packed?
It really isn't new for me to have dreams over time that are essentially the same each time. I also have the re-occuring house dream. That I started getting when we were trying to sell our house, that one still revisits me, different house, same people. I also use to have the can't find a bathroom dream, where the only bathroom I can find is in front of everyone and the ones that are private are broken or just plain weird. Or the locker dream, of not remembering my combination. I would guess somewhere in all those dreams there is probably a thread, something that ties them all together - or maybe not. Maybe each one of them ties themselves to something different in my life. I always think that I decipher these dreams too easily. Such as the idea that being able to travel with all my 'tag-a-longs' is something I can't comprehend. I will always be tethered to something and will never be free to do things without having a sense of obligation.
Whatever the case maybe, I realize I would like to go back to Hawaii, now 23 years since we last visited. But I really don't want to go if I feel overwhelmed like I do in my dreams, it is to be, pretty, warm, and peaceful. So, who knows maybe someday I will get back there, but without the oxygen, vest, or inhaled paraphernalia. One never knows.
Sunday, May 1, 2011
CF Walk 2011
In case you are a reader and would like to donate to the CF walk, Great Strides 2011, walk for a cure here is the link http://www.cff.org/Great_Strides/SarahHackenmiller Online donation is easy and of course always appreciated!
I also ask if you are a walker, and haven't yet, please go to the Great Strides website and register under my team name.
We are off to a fanstastic fundraising goal this year, thanks to so much generostiy. It doesn't matter if you donate .50 or $50 every cent is important.
Thank you all.
I also ask if you are a walker, and haven't yet, please go to the Great Strides website and register under my team name.
We are off to a fanstastic fundraising goal this year, thanks to so much generostiy. It doesn't matter if you donate .50 or $50 every cent is important.
Thank you all.
Friday, April 29, 2011
A Royal Day
So, I kept telling myself I could care less about this royal wedding, since really what significance does it have in relation to me? None. But after watching the hype for the last four days (as I tried to avoid it before that). I woke up this morning (nope, not at 3) but at 6:30 and was super exicted to see Kate's dress. There is nothing more fairytale than watching as a royal couple comes out onto a balcony for a kiss. We always dream for our prince as little girls and here is a story book come to life. I wish them well, I wish them to skip the ugly fate that has plagued too many royal couples. So not only do I wake up to a long awaited sunny day but also to beautiful wedding photos and fairytale kisses (or pecks).
The second part of my day and the real highlight that I have been looking forward to was a visit to the Chiropractor. I have never been to one, but I had decided I was tired of living with this stupid hip pain that has bothered me off and on for the last five years. I spend so much time trying to fix my lungs that I avoid all the other broken things on me. Which maybe having fixed this sooner it might have helped my lungs. In any case, no looking back because again, hindsight brings us nothing to fix where we are at.
I walked out of there feeling almost lighter, it really felt great getting my spine and hips cracked. Now I will admit I was a little scared. I didn't know how the whole cracking thing would go and I have to laugh at myself because I gave this great loud UGH everytimes she cracked something, but it felt good. It was just this weird natural reaction to make that sound. I will go back again next week and work on this hip. It already feels about 40% better since I left there. I also found my muscles are like rocks in my upper back and near my hips. So, now having done it just once I am an advocate for everyone going at least once, I still felt like she was going to break my spine but, she didn't and I feel better for having gone.
So, if you question going because you have back or shoulder pain, and like me have had x-rays or MRI's that show nothing, then go to the Chiropractor, give it a try and see if they can help. I am sure you will be walking on air, kind of like royalty, when you leave.
Cheerio my friends.
The second part of my day and the real highlight that I have been looking forward to was a visit to the Chiropractor. I have never been to one, but I had decided I was tired of living with this stupid hip pain that has bothered me off and on for the last five years. I spend so much time trying to fix my lungs that I avoid all the other broken things on me. Which maybe having fixed this sooner it might have helped my lungs. In any case, no looking back because again, hindsight brings us nothing to fix where we are at.
I walked out of there feeling almost lighter, it really felt great getting my spine and hips cracked. Now I will admit I was a little scared. I didn't know how the whole cracking thing would go and I have to laugh at myself because I gave this great loud UGH everytimes she cracked something, but it felt good. It was just this weird natural reaction to make that sound. I will go back again next week and work on this hip. It already feels about 40% better since I left there. I also found my muscles are like rocks in my upper back and near my hips. So, now having done it just once I am an advocate for everyone going at least once, I still felt like she was going to break my spine but, she didn't and I feel better for having gone.
So, if you question going because you have back or shoulder pain, and like me have had x-rays or MRI's that show nothing, then go to the Chiropractor, give it a try and see if they can help. I am sure you will be walking on air, kind of like royalty, when you leave.
Cheerio my friends.
Wednesday, April 27, 2011
Someone else's eyes
I never like to visit my doctor, not that there is anything wrong with him. As a doctor I couldn't ask for better, as a person I think he is a good human being. But I don't like to see him because I don't like to see the truth. It is always through his eyes that I see how I am doing. Today was not a good visit.
I saw the good Doc today in preparation for the sinus surgery that I thought I avoided but as a good patient trying my best to give a transplant the best outcome I said I would do the surgery, as per the Pulmonologists request. So on May 26th I will have a drill put in my nose and beyond there I really don't want to know the truth. Sometimes an ostrich is a good thing, other times it is not.
As my weight continues to be an issue, which until today I thought I was doing okay but apparently I am not. Through his eyes I see that I am carrying about 5 pounds of water retention because the effect my lungs are having on my heart and my heart has to work harder to make the lungs and the rest of my body happy. Problem is I need more fat, what I thought was fat is not. I honestly don't like looking at myself in the mirror anymore, because I can see what I have lost especially in my upper body and my arms, but I have refused to do anything about it, to really push to get it back. Why? Well because I am tired and I am still trying to work and I am still trying to live a "normal" life. I continue to try to survive on my 3 square meals a day and frankly it isn't working. Eating my big supper makes me feel awful and effects oddly enough every part of my day. See if I eat at 5:30 a big meal than my food sits there and I have to wait until 9 to do my vest which takes an hour, then it takes me almost 30-40 minutes to get into bed after rinsing nebs and normal get to bed things, sometimes I eat, when I don't it goes a lot faster. But if I don't get to bed until after 1030 then it makes getting up harder and if I can't get up until 7 then the whole day is off once again. I don't know why I can't fix this mess, I am frustrated that I can't seem to find away out of this mess but yet is it that I can't or that I am refusing to change?
I don't come from a family of grazers, I don't know how to eat 8 times a day. I don't know how to eat Camembert (that would be fancy cheese with incorrect spelling) on crackers. I don't know how to eat like that, I don't know how to find the energy to exercise beyond my 30 minute treadmill, I don't know how to get muscle back and I need to do all these things. Through the docs eyes all these things need to be fixed to help me have a more successful transplant. I just don't know how to get there. I feel scattered and disjointed everyday. Some days this fight is so hard and then days like today when the reality of what I know but chose to ignore hits me in the face, I crumble.
I have a long road ahead of me, I have the a difficult blood type for transplant, I have antigens, I lack some antibodies. This could be a long wait and I have to try to tie the knot at the end of my rope and hold on. I just hope I can keep holding until that call comes. I don't like to feel this sad or this unsure, but when I see myself trough the good doc's eyes I can't ignore the truth. I just can't let him win with the feeding tube discussion, I have had to do so many difficult things already, I am not ready for that one. Just give me one thing I can do on my own dear God, give me my love of food back and help me find ways to get fat back and find some answers..
Whipping cream, here I come.
I saw the good Doc today in preparation for the sinus surgery that I thought I avoided but as a good patient trying my best to give a transplant the best outcome I said I would do the surgery, as per the Pulmonologists request. So on May 26th I will have a drill put in my nose and beyond there I really don't want to know the truth. Sometimes an ostrich is a good thing, other times it is not.
As my weight continues to be an issue, which until today I thought I was doing okay but apparently I am not. Through his eyes I see that I am carrying about 5 pounds of water retention because the effect my lungs are having on my heart and my heart has to work harder to make the lungs and the rest of my body happy. Problem is I need more fat, what I thought was fat is not. I honestly don't like looking at myself in the mirror anymore, because I can see what I have lost especially in my upper body and my arms, but I have refused to do anything about it, to really push to get it back. Why? Well because I am tired and I am still trying to work and I am still trying to live a "normal" life. I continue to try to survive on my 3 square meals a day and frankly it isn't working. Eating my big supper makes me feel awful and effects oddly enough every part of my day. See if I eat at 5:30 a big meal than my food sits there and I have to wait until 9 to do my vest which takes an hour, then it takes me almost 30-40 minutes to get into bed after rinsing nebs and normal get to bed things, sometimes I eat, when I don't it goes a lot faster. But if I don't get to bed until after 1030 then it makes getting up harder and if I can't get up until 7 then the whole day is off once again. I don't know why I can't fix this mess, I am frustrated that I can't seem to find away out of this mess but yet is it that I can't or that I am refusing to change?
I don't come from a family of grazers, I don't know how to eat 8 times a day. I don't know how to eat Camembert (that would be fancy cheese with incorrect spelling) on crackers. I don't know how to eat like that, I don't know how to find the energy to exercise beyond my 30 minute treadmill, I don't know how to get muscle back and I need to do all these things. Through the docs eyes all these things need to be fixed to help me have a more successful transplant. I just don't know how to get there. I feel scattered and disjointed everyday. Some days this fight is so hard and then days like today when the reality of what I know but chose to ignore hits me in the face, I crumble.
I have a long road ahead of me, I have the a difficult blood type for transplant, I have antigens, I lack some antibodies. This could be a long wait and I have to try to tie the knot at the end of my rope and hold on. I just hope I can keep holding until that call comes. I don't like to feel this sad or this unsure, but when I see myself trough the good doc's eyes I can't ignore the truth. I just can't let him win with the feeding tube discussion, I have had to do so many difficult things already, I am not ready for that one. Just give me one thing I can do on my own dear God, give me my love of food back and help me find ways to get fat back and find some answers..
Whipping cream, here I come.
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