Friday, April 27, 2012

Being Me

Today I looked down at my feet and smiled. Not because I haven't seen my feet in awhile, but because I painted my toe nails and doing so just makes things seem so much better. Just like a few weeks ago when I first painted my fingernails and got all excited, this is the same thing - yet different.

As I looked down at my little pink toesies, I felt this over whelming sense of me. What does that mean exactly? It means that somewhere along the way the last few years the Sarah I knew got lost, the Sarah that had fun and did fun things, and painted her nails, fingers or toes, purples, pinks and shimmery colors got lost in all the crap of feeling like crap and trying to live each day just to make it through. I think I got lost not only in being sick all the time but in trying to also be the good wife and do all the daily things wives (of the 1950's) do.

For some reason when I looked at my shiny toes I had a flash of the last seven years. I recalled how I used to go for walks in the morning before work when we lived in the town home and how absolutely shitty I felt walking and how my chest would hurt and I would have so much pain, but it became the norm. It was an awful norm and to think that is seven years ago. Because I thought I was 'well' then and in reality I was not. I guess after I had a part of my lung removed back in 2004 things changed. I was so focused on wanting to get the wedding over so Chris and I could start 'living'. I guess the first year was okay, my health stayed fairly stable but that second year as we moved to the new house all hell seemed to break lose and I was sick a lot.

I guess until one looks back on things they don't realize what exactly they have done, changes made to make my life 'easier'. Like planning trips up the stairs with laundry, or planning how many trips to the basement, or not going somewhere with friends or doing something late at night because all of it will in some way cause you pain, discomfort or just plain ill feeling. I don't know how many times I bowed out of doing something because of how I felt, it wasn't always because I didn't WANT to do something it was that I didn't want to face the consequences of doing something that would in the end make me feel like crap when I already felt like crap.

So, little by little my world changed and morphed into something that was no longer me. I disappeared a little everyday and I didn't know it, but now I do and I refuse to let my life be ruled like that completely again. Not that my health won't dictate me but I will do my best to do the things that bring me the joy I once had.

Today I found out my bronch showed no Acute rejection, meaning A0, but it did find Chronic or C1 rejection. What exactly does that mean? It might just be because of the current infection, that's what the doc is thinking, because some result say I have healthy lung tissue. And I refuse to Google it. So for now I am putting the C1 on the back burner until Monday when I go back in. For now C1 is nothing more then a combination platter at Hunan Garden that is part of the Happy Family menu. I refuse to let it ruin my weekend as I have a lot planned.

I have felt more like the old Sarah in the last week then I have in years and I rather kind of like it. Now if I could just break out of my shell and buy a polish color that is something other than pink or purple.

Wednesday, April 25, 2012

Simple Seven, Simply Retro!

I have a new friend! She is going to help improve my overall health, take me on journeys to magical places, and mostly put a smile on my face every time I see her.

Henrietta or Henri for short!
I am so excited to get in shape enough to actually ride her further than around the block and actually up the hill. I took her for an inaugural spin yesterday, glad I decided to just try the block rather than a discovery trip through the neighborhood. I apparently thought that even though I can walk 3 mph on the treadmill and run for five minutes that somehow I would have the thigh muscle to push up  a hill, I was very much wrong.

But all things take time, right? Guess I will just have to go around the block everyday, or many times a day and when I can finally get up the hill I will move on to two blocks and then three and then one day I will find myself on the other side of town. I will be so excited I made it that far only to realize I have to go back the same distance as I came because in my excitement I will have forgotten that part!

I have also been informed by my sister and niece I need a helmet, wrist guards, knee pads and likely bubble wrap to keep me safe. At this rate I think I need to add training wheels, you know, just to make sure I don't topple sideways.

Thursday is my six month bronchoscopy, I am really trying to be hopeful and positive. It isn't alway easy to do when there have been so many bumps in this road but I keep telling myself a positive attitude is needed here, if I think negative, negative happens. So only hopeful thoughts.

I will keep you posted on Henrietta's and my journeys through the neighborhood and some day around Rochester.

Monday, April 23, 2012

Six Months

Six months ago today I went into surgery to receive new lungs. Can you believe it has been six months already! I remember just about three or four weeks after transplant sitting at my parents house wondering how on earth I was going to make it through. I was sore, underweight, tired and scared to death of these new lungs inside of me. Will I ever feel normal? On top of that will I ever know a life without pain and will these legs and lungs of mine ever work again, happily.

Fast forward to today. Where am I and where do all things stand? Let's recap, I have had three rejections, an abscess, and now a return infection of the lovely Pseudomonas and Aspergillus. That's just the crap stuff that happened. Now on to the good stuff. I have traveled to the Twin Cities more times in the last six months then I did in the last two years. I got to see my nephew play hockey for the first time in two years. I went to my sisters house this past weekend for the first time since Oct. 2010. I spent the whole day with my husband in the cities a few weeks ago, eating at a restaurant for the first time in nine months and traveling a whole day without a care or thought. I have painted more in the last six months than I have the previous nine years since I left college. I painted my fingernails, I ran five minutes, and now I am walking on the treadmill at 3 mph daily. I have read more books then in the whole Harry Potter series since transplant and finally walked around my neighborhood. Whew, I am sure there are more things I have done but right now I can't think of them.

My pain is still a daily thing, my chest feels like it isn't part of me most days. I still have issues eating with bloating and a sense of food just sitting there at the end of the day. But I still love food and I go at it like it's going out of style. 

There are many days lately that I am suddenly overcome by the realization that I have someone else's lungs inside of me. People say they are mine now, and to some extent yes they are but there is no denying that I have a part of another being in me. It also makes me nervous when I realize how delicate this whole thing is. I try not to dwell on it. I kind of say a little thank you and take hold of the moment and the day, that I am still here for whatever reason and to cherish this very moment. Then I move on, because dwelling on it will only make me sad for knowing it can all be gone too quick but yet how thankful I am for being given this extra time. Funny though the more days you are given the harder it is to think about losing it all again. But I won't travel that road today. Today I will rejoice that I have had a good day and I got to go to Hobby Lobby and Home Depot with my dad, lunch with both my parents, and finish assembling our new bed with my husband. I can only be thankful.

Happy six months lungs, and thanks for my donor for this celebrated day!

Friday, April 20, 2012

Listen Closely

I have been purposely not blogging for a few days to keep my Donate and Win! post at the top. I will likely post it again to keep it up there, but if you are looking for that post click here this will take you to the site about rules and regs regarding donating and winning the painting. Or if you already know the rules and just want to get to the donation part, click on the Great Strides link to your left.

With that said, I shall move on. This has been a week of many things, not least of which is a lot of thinking and reflecting. Self reflection is great but it can also be difficult. I have had thoughts this week about where my life is at and where it may be going. I know I have talked about this times before but lately it just seems different. 

Today was the funeral for SM, the young woman with CF who passed while waiting for her miracle. It isn't hard to sit here and think that today could have been me just months ago as I withered away on the ventilator waiting and hoping that these lungs would come. I was lucky enough to receive that gift, but as I sat there today in the beautiful church listening to the music, and the homily and watching the family grieve their loved one, I wondered who was luckier, me or SM. I realize we are both lucky and for some reason, which who knows if we will ever know, God has given us this path. For SM she is now standing and breathing freely, no tubes, no machines, no holes in her body, and free from the confines of this earth and it's limits on making her feel better. She is standing with her brother, free. 

I on the other hand am breathing much more freely than six months or two years ago but I don't know what it is that I am suppose to be doing at this point, other than I feel some obligation, not a negative obligation mind you, but a duty or calling to make something of this life I am given for all those who have suffered with CF and lost the battle. I have been given the chance to live another day to do whatever it is that I please, within the confines of new lungs, rules and restrictions dictated to me by the medical community. Which means mostly I can do whatever except eat pomegranates, dirty fruit and veggies, not sit in hot tubs ever again, avoid sick people and a few other things that I probably wouldn't do anyway. 

I am trying to figure out what my role is as an employee, a wife, a designer, and a transplantee. How does one feel so lost sometimes when they have been given so much and have so very much to be thankful for? I sometimes look at people when I am out and about, or when I am on Facebook and see people's posts about the cool things, or the mundane things they do and think how strange it is that all we do here someday means absolutely nothing when we are gone. Yet we are set here to do something with our life, learn, teach, explore, help, all of the above or none if we so choose but life is something and about something. We are here for such a short period of time and yet need to be able to make something of what we are given.

I guess that's why I think SM is sometimes lucky, she is free of these grips we inflict on ourselves, in our lives here on earth. We make a big deal out of unimportant things and not acknowledge the small things that mean the most. Do I wish I would wake up and just know what it is I am suppose to do, you bet. But then there are days like today when a 10 year old boy exhales in surprise at his birthday gift that I painted for him.  I couldn't have been happier that he was so tickled with his gift. And maybe that's my gift to the world, one smiling face at a time, giving the gift of myself to others. God will provide, that being said, maybe his provisions are through love and his tool is me. Maybe what I don't think I know, I already do, maybe what I am searching for has already been found.  Maybe it isn't a neon sign I am looking for but rather a whisper on a breeze. All I can do for today, is listen.

Rest in Peace Stacey!

Sunday, April 15, 2012

Donate and Win!

Donate and win - that means two things. I am collecting donations again this year, as I have for the last 17+ years for Great Strides, the walk to raise money for Cystic Fibrosis. The money raised is used for research to advance and improve the lives of those with CF. 

This year I have decided to sweeten the pot, for those who donate at least $15 by 5 PM CST, May 1, 2012*, your name will be put in a drawing to receive a painting done by me. The painting is acrylic medium on a 16 x 20 canvas frame that is 3/4 inch deep. I will put all names in a hat and draw a winner, so everyone has an equal chance of winning. Not only could you win a painting but you also win for being an awesome person donating to a great cause. 

WIthout further adieu, to donate to the walk, click on this link Cystic Fibrosis Great Strides Donation Page - Sarah Hackenmiller
and donate today. If you choose to mail a donation to me remember to make checks to CFF or Cystic Fibrosis Foundation, and mail to me at 3320 Ninth Ave NW, Rochester, MN 55901. **

Painting by Sarah Hackenmiller

*Winner will be chosen, and announced by 5 PM, May 2, 2012 on my blog and Facebook.
**Donations need to be made online or sent to me to be eligible for the drawing, donations mailed to CF Foundation I will not know of in time for the drawing. If you have questions please email me at

Anyone who has already donated is included in the drawing, and again everyone has the same chance of winning. 

Thanks again for all your support, Sarah
Pass this along to anyone you know and or direct them to my blog, Exhortation of the Dawn.

Saturday, April 14, 2012

Angel in Heaven

Today the heavens got a new angel. My friend SM, who has been waiting on the vent unit passed away today. She waited ten months on a ventilator for those lungs to come. She was a fighter, with more strength and fight in her than most people, her courage is one of legend. My prayers go out to her family and friends. She will always be treasured.

You will never be forgotten.

Monday, April 9, 2012

New Look, Same Blog

I was hoping to give this blog a new look and so I did. Not sure if I will stick with it but it certainly is a bit more upbeat.

Today was Monday and all day I kept thinking it was Sunday, that usually happens with a holiday. It also happens when your sister decides to stay a day past the weekend, it completely throws off a persons sense of time. Although you would have thought spending my whole morning at the clinic/hospital, waiting, I would have realized it was not, in fact, the weekend anymore.

However today was a big day, today I got my tiny little stomach tube removed. Seven months after it was placed it is gone and in its place a second belly button. Sweet, another scar, I've lost count. It was very painless to remove, the hope is now it closes up fairly quick so I don't have to worry about leaking all over the place...gross! Had to be careful what I drank today, only thicker things and I had to sip. Do you know how hard it is when all you really want is to guzzle a glass of water?

Not only did I get my tube or rather my button, since that is really more what it was, removed but I got to see a friend of mine that also has CF. He is a doctor in his 50's and I just love running into him, we always have such great conversations and it is so great to connect with others with CF. We always seem to run into each other at just the right time. I am inspired by him and I think others with CF should be also, to be a pediatric anesthesiologist in cardiology - pretty impressive. He's very supportive and always leaves me with a smile.

Well, enjoy the bright, shiny, new look.

Saturday, April 7, 2012

I thought my walk yesterday was fantastic, and it was, but today I topped it by running. As I walked on the treadmill today I kept increasing my speed and at one point I just started running, and I did so for 2 minutes. From there I was able to walk at a higher speed then I have yet to do on my treadmill. So, after years of not running, I ran and it felt exhilarating and freeing.

So, even thoug I laid awake for over an hour last night I had a really great day. I even ironed a shirt and dress for Easter Sunday service, as I wasn't sure if it will be a dress day or pant day tomorrow. I still struggle with the gut no butt issue so no matter what I wear I feel awkward, but that doesn't mean I can't be pressed. Now talk about not doing something for a long time, I don't think I have laid an iron to close since we left our last house and I had to actually locate my iron and buy myself a new squirt bottle. But I actually enjoyed ironing.

I better call it a day and hope for a good night sleep. Wishing you all a Happy Easter.

The Neighborhood

On October 20, 2010 we moved into this house, that next week I took Marco for a walk around the block, literally around just one block and that was all I could handle. I hadn't worn oxygen outside for exercise yet, only during exercise inside but that was the longest and most painful walk of my life. That would be one of maybe three walks I took between October and November of that year.

Fast forward to April 6, 2012, yesterday, I took my first real walk around the neighborhood by myself. I took one a few weeks ago with Dad but this was my first time, by myself...did I say that once already, just making sure you get the gist. It was great! I didn't just walk one block, nope I walked more and I can't even tell you because I don't know how far, but I do know that it was up and down hills, and down a path I have never set foot on in my life. It is much more of a workout walking outside then on the treadmill and so many better things to look at.

I hope there will be many more outdoor walks to come, looks like today might be a not so weather friendly day to walk but soon, very soon and who knows how far I will go next time.

Friday, April 6, 2012

Decision Day!

What a day! Thursday was D-day, decision on surgery. Nissen Fundoplication or not, well I opted for not. I had such a struggle with this decision. There is some research out there that says this surgery that helps with GERD could improve situations with rejection in post transplanted lungs. So, with a heavy heart I weighed the pros and cons and still was confused. No one ever wants to make the wrong decision, especially when it can be so life altering and my lungs are so important but since I don't have a crystal ball I had to decide on my own. I weighed the possibility of effecting my lungs, but also the fact that I would be losing a lot of the weight I just worked so hard to put on because I won't have a regular diet for 4-6 weeks, mostly liquid to start then soft foods. On top of that the problems with possible bloating and pressure and learning how to eat different and not swallow so much air. Plus trying to recover from the pain. I have had so many surgeries and still feel like I am not on solid ground from the abscess or the last rejection that I am left tired and deflated at times. I also have the kidney issues that need to be addressed, so I opted for no surgery and trying a new anti-rejection drug in the next weeks to come, if all goes well that will hopefully work better than my current drug regime and to be vain, give me back my hair!

I also will be having my stomach tube removed, hopefully next week, which really is nothing more than deflating it and pulling it out. So then i will be all on my own to gain weight, and the way I have been cooking and eating, that shouldn't be too difficult. That was my other issue with surgery as I mentioned was the weight I would lose, if I eventually have to have the surgery I would like a few more pounds on this frame to work with. 

Then the sad news came of my friend waiting on the vent. She has once again hit a very large bump in the road, sounds as though no longer transplantable. She has been such a courageous Cyster, fighting CF with everything she has and trying to hold out for those lungs. There is something to be said for her determination and tenacity. God gives each of us a different road to follow, we don't know which fork we follow or where that road will lead but along the way we meet wonderful people, and experience amazing things, though it's over all too quick hopefully somewhere along the journey we are grateful for having been here and have in turn touched the lives and hearts of those around us. I know my friend will leave a mark forever on many hearts around her.

May your day find you smiling at least once, for today is a blessing from the moment you opened your eyes.

Tuesday, April 3, 2012

Rural Route 1

Woke up at 4 this morning, I know big surprise. Except this morning I blame my issue on eating too much Whiskey BBQ chicken last night, but I still think it's worth it.

I was dreaming before I woke up about the house I grew up in, or rather the land not the house. I dreamt I was driving a jeep through the field and through some holes to get to a picnic area. Which not sure why a picnic area since we never 'picnicked' in our field but that might have interjected because of the picnic in the book I read last night. In any case, when I woke at 4 I immediately remembered all the times we actually did go for a drive through our back acreage. We had 10 acres total, the front one or so was where the house was and the lawn we mowed but behind the house was a small hilled acreage, a field of natural grasses, at one point a garden or two in different locations, our burning barrel (you do that in the country), horse pasture, and our wood pile.

We had a lots of trees on our property, old ones and of course we also planted new ones. But every year we would trim our trees and it was our duty as kids to help haul the branches, which I think I might have talked about once before. We also had my dad's small pickup truck and trailer, which we would occasionally fill full of twigs and branches and drive to the back of the acreage to unload the wood onto the very big, ever growing pile of brush. The ride was so bumpy, you'd bounce up and down, side to side, and enjoyed every minute of it. I always thought we would get stuck or something, but we never did, I should have known better since my dad was driving.

Working with my dad never felt like a chore I don't know why, I guess because he never made it seem like work, he never yelled, he always instructed. What we didn't know or understand he explained with patience. Guess that is why I always have such fond memories of living on our little hobby farm, it was a happy place. I think as a kid I never thought I would live anywhere else but there, my life would be on that farm and I would be happy forever. Of course when I was 19 we moved and I was so sad when we left, I still find myself sad at moments when I relive those memories and yet happy to have had them.

That house was home, it will always be home in my mind. My play mates were my siblings and my pets, not that I didn't have friends but living rural is different then city living. I remember fondly my grass green carpet in my bedroom that I shared for a while with my sister. I remember the original velvet curtains in the living room when we first moved there, or the mouse population in the house before remodel. I remember all the work my dad did to fix up the house and all the work my mom did to take care of the inside of the house and the gardening. They worked hard at that place, but I also know with it came a sense of ownership and pride. Those were also the days when us kids found ways to entertain ourselves outside, creating journeys, building forts, shooting black and yellow spiders, endless ways to occupy our time that I can't even recall right now but I know we very seldom, if ever, used the word board, because if nothing else we mowed.

As I lay awake this morning wishing I could go back to sleep I was also happy to have such fond memories. How lucky I was to grow up like that. How lucky I was to be a kid and be creative. How lucky I was to have parents that instructed not demanded. They say home is where the heart is, and even though we move on in life and live in our own house with our own things and day to day living, there will always be a piece of my heart that will forever remain at Rural Route 1 Box 105.

Monday, April 2, 2012

Nature Walk and More

I did something Sunday that I haven't done in years, in fact it's been so long the last time I remember doing it was for my college art show which was back in 2004. You will laugh when I tell you that what I did was paint my fingernails. Yup, I sat outside with my 'duck' mask on (it's really stylish) in the breeze and painted my nails. Mind you the polish still stunk but it was tolerable enough. As a side note the reason I didn't paint them is my old lungs would literally bleed from the smell. When I was all done I looked down and thought how odd the whole thing looked. Like someone else's fingers are attached to my hands.

I should also mention that my nails have never looked better or been stronger. The last years I have had the worst nails, breaking, peeling, and just not healthy. I couldn't get them to grow long if I tried, now I don't even try. I guess this is one of those 'good' side effects of transplant. Seriously I no longer have bumps in my nails and I can't bend them, if that wasn't cool enough they seem to grow faster than I can keep track of. Oh, and the shape of my nails have changed. People with lung issues typically have clubbing, wide nails, mine have narrowed, it is just crazy to look down at my hands. Some days I am mesmerized by them and I am sure by now my husband, niece and mom are tired of me saying 'look at my nails'. Although Josie was most exited yesterday when I sent here a photo of my nails, not only has she never recalled seeing them painted but they were so long. How cool is it to text my 12 year old niece to discuss my nails, really does life get any better than that?

Sunday was such a nice day, once the sun came out. I got to spend some time with the littlest niece and nephew at Quarry Hill, we had a great time walking around and collecting various nature items, like tickle sticks - I never knew they existed but then again anything with a fuzzy end qualifies as a tickle stick. I also found that when walking with children the things they want to collect end up being the things adults carry and nothing in the child's hand...amazing. But what fun kids and so very smart. I had a great time, I think they did too.

Checking out the spring.

See what I mean!