Good-bye, sweet sister.

This is Sarah's brother and occasional guest blogger a few years back.  I have the unfortunate job of posting here that Sarah died two weeks ago today.  Her battle with CF and post-transplant infection finally took it's toll on her body and she could no longer fight on-- her heart had been compromised by infection.  I'll try to be good and post more information in a few days for anyone who has followed her story or who is looking for transplant/CF information-- or frankly, because it is a way for me to remember her and share my thoughts about her.

Good-bye little sister.  You are missed greatly.  

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Sarah passed away Sunday, Aug. 4, 2013, due to complications from a lifelong battle with cystic fibrosis and a recent double lung transplant.

Sarah was born in Rochester in 1977. Diagnosed with CF at 18 months old, she was given a life expectancy of only about 18 years. Growing up on a small hobby farm, she loved raising and caring for animals. She attended John Marshall High School, where she played the flute in the band. She credited this with developing her lung capacity that kept her healthy later in life. Sarah attended Rochester Community College, obtaining her AA degree in 2002, and graduated from St. Mary's in Winona with a BA in graphic design in 2004.

She married Chris in 2005. They enjoyed spending time with their dog, Marco, and taking road trips and long walks when she was able.

Sarah worked at several jobs before taking a position at Community Education as a graphic designer for 8 years, before starting a business selling her artwork and illustrations. She was hospitalized in June of 2011 and spent 4½ months in ICU before receiving a double lung transplant in October of 2011. Sarah and her family are grateful for the care and kindness of her doctors and nurses.

Family was the most important part of Sarah's life; she loved holidays and family gatherings. As her health failed, she spent time recounting family vacations; it was a source of comfort and strength. She especially loved her nieces and nephews.

She never looked at her illness as a curse, but rather embraced it as part of the guiding force that helped her become the woman she was; Sarah was kind to everyone she met. That kindness gave her a gentle strength that drew people to her. Even at her most painful moments, she pointed out how others were suffering more than she and was thankful for the life she had. She always found the silver lining.

Sarah died peacefully at Saint Marys with her family by her side.

Hope springs

It was just two weeks ago we had the CF walk and yet it seems so much has happened in that time it feels like much longer ago.

I gave a speech at the CF walk this year, I am by no means a public speaker and have always hated talking in front of others, even in a small group. So this was a big deal for me, but pleased with myself for not weaseling my way out of it. It was also a great day because another CFer got her lungs. She waited in the hospital for six months, here she is two weeks later breathing with new healthy pink lungs, I am over the moon happy for her and her family. It will be a struggle, but the feeling of those lungs is unbelievable.

There are many CF bloggers I follow and this past week another CFer got her second transplant, what a miracle it was, so touch and go. Her progress as of today, she is out east, is better than anyone had expected. Apparently the second time around can be worse than the first. Considering my first go round, I would hate to see worse.

On to my current state of being. Come July I will have had this PICC line in my arm for a year. It started because of that infected lymph node that was finally removed in January. But continues to be in my arm because of a nasty fungus, Aspergillus, has decided it loves the nice warm moist environment of my lungs. I have gone from drug, to drug, to drug, every kind, every form, and every side effect possible.

Last week I had another biopsy this time from outside my chest in, as there was a white spot found on my CT scan, this one-inch roundish spot ended up not to be cancer but rather a large mass of fungus. Seriously getting a bit ridiculous. So now for three plus hours of my evening I am attached to either a medicine ball or a metal pole.

This past Monday I found a lump on my belly, willing it with all my heart to go away, it did not. Monday I have an ultrasound and needle aspiration, as they called it. It better be that I have a weird fat deposit because I am getting pretty tired of dealing with these things. I just can't seem to catch a break.

Every day I watch the birds out my patio door on the deck and they make me smile. Today four orioles came to eat on the oranges I put out. It was amazing. I can find joy in each day, I don't have a problem with that. Nobody ever guaranteed an easy path in life and I realize we are here for some reason.

There are days my life totally sucks. It's true. I don't have the job I use to, with the people I loved working with because I had to have a lung transplant. I can't do all the things around my house I used to because it isn't good for my lungs, and or don't have the energy. Some days I can hardly get off the couch and other days so great I do a lot and pay for it the next day. I can't make plans because I never know how I am going to feel until I wake up that day.

It has literally been one thing after another since June of 2011. I keep waiting for a break but guess that break will only come when I am dead. Not that I see that as a bad thing. I just wish sometimes I could do more while I am here. As always, the same complaints day in and day out.

Hope is all I have and I hang on to it every single day.

Great Strides...Donate and be a winner! -- Update: The Winner is

The winner of the 2013 Great Strides painting is Deb Manemann. Thank you to all who donated and supported Great Strides. As of today's tally we have received over $2,000 in donations. I am collecting donations again this year, as I have for the last 18+ 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 am again giving away one of my paintings. For those who donate at least $15 by 5 PM CST, May 4, 2013*, your name will be put in a drawing. 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 already win for being an awesome person donating to a great cause.  Without further adieu, to donate to the walk, click on this link http://www.cff.org/Great_Strides/SarahHackenmiller and donate today. If you choose to mail a donation to me remember to make checks payable to CFF or Cystic Fibrosis Foundation, and mail to me at 3320 Ninth Ave NW, Rochester, MN 55901. ** 16 x 20 Acrylic Painting by Sarah Hackenmiller *Winner will be chosen, and announced by 5 PM, Monday, May 6, 2013 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. If you have questions please email me at schack2005@gmail.com 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

Right-side, Left-side

I would be remiss in my duties if I didn't mention the state of the weather at this moment, seems to be high priority around these parts lately. Today, sunny, later today forecast, rain. Hmph.

So I have been putting a lot of time in my studio these days. My brother came and organized me this past weekend and it was great. It always helps to have an outside perspective on something. Of course when one wakes up at 3 am and suddenly panics because they can't remember where they have now stored their bubble wrap this becomes a whole other problem.

I have stated previously that being an artist can be a real pain in the derriere, especially for me. I have an issue with the left-side and right-side of the brain. Some days I wake up just ready to create and things go smoothly. Everything I want to accomplish I do and I feel just great at the end of the day for what I have accomplished. Other days, like yesterday, it's like I put the pencil or brush to my paper and everything comes out wrong and the whole day goes that way with my art.

Some days I find my left-side takes over and just won't let go, it tells me what I am working on needs to be realism, that any kind of deviation off of that and the project is wrong. The problem is I then tend to overwork what I am doing and get absolutely frustrated, then I have ruined what I am making. I also find myself upset that I have just used up a perfectly good piece of paper on something that didn't turn out.

When I can't make something work I go to the internet and search whatever it is I am working on, watercolor, drawing, figure, flower and get a perspective on where I am going wrong. Usually I get more discouraged because I look at others artwork and wonder why I can't do what they did, simply stated, and how the whole essence of what the object is remains completely clear without ever line or dot.

I think sometimes that is why I like crocheting because I get to follow a pattern, there is no creativity other than color choices. I just follow the directions someone else has laid out and I follow it to the letter. There is no deviation, a double crochet will give you the same look time over time.

Today I will attempt again, changing things up to see if it makes a difference. Trying to let my right-side be in charge instead of the left.

If I succeed I will share my success. If I don't I will probably share my disappointment, so either way stay tuned.

Today I leave you with a little Journey.

Genetic Procrastination

I will not complain about the weather, I will not complain about the weather, I will not complain about the weather!!!

So, with that said, I look out over the beautiful dusky sky and say how lucky I am to have another day on this earth. I will say that the copious amounts of rain have nicely cleaned off my patio furniture, the table top shines, thank you mother nature. Now when can I get that umbrella out to keep the sun at bay?

Been working in my studio/art space the last few days on illustrations for my aunts book. It has been great, although I have discovered a few things. First, I need better lighting, the one fixture with crappy bulbs is not great for creating. Two, I need a better chair and maybe a foot stool. I currently sit on a wooden stool with at cushion on the seat and I put my feet on the rungs but it hurts my feet after awhile. Third, I need to have my desk up at an angle as I keep my head bent so long that I end up with a neck ache. Finally I really need to clean up in there, I pull stuff out and it never makes its way back to it's home spot, which I realize this is a fault on my part not the space itself. But my organizer, aka my brother, is coming this weekend to help remedy some of my issues so let's hope that helps for a the long term.

Also need to reorganize our furniture. The great thing about our house is we have a lot of space, if we had kids we would be set for play space but instead with just the two of us and three pieces of exercise equipment, two of them huge, and lots of furniture especially in areas we don't use we really need to figure something out. I think Chris and I like change too much, or maybe it is because we have little control of the important things that the one thing we can do is move our furniture around. Seems about every three months we rotate how we have our living room. Partly because we really don't have a focal point. We don't have TV in that room so it is more just sitting, and no fireplace so it just all faces each other one way or another.  I dream of a fireplace one day, and hardwood floors, oh and skylight in the kitchen. Which in our house the kitchen, dining room, and living room would all benefit from a sky light as it is one big space divided by a 3/4 wall around the kitchen. So someday when we win the lottery we will get these nice upgrades, until then we will just keep rearranging furniture.

The CF walk is in a couple weeks and I have yet to start my speech. Wish me well on that as I hate public speaking, makes sense doesn't it that I would wait to do my speech. I always work best under pressure, just ask my parents. My mother does not prefer this method; however, this is a shining moment of my fathers genes coming through. Thank you Dad!

I now must decide if it is nap time or art time. I have to be back at the clinic around 2 and this beautiful day says I should sleep! We will see what wins over my body or my brain.

And because I can never get enough of this video and it makes me smile on gloomy days, enjoy!

Ahead!

I am a broken record, this weather sucks! I honestly would like to just run away from it but it doesn't appear to be nice anywhere within a days driving distance so I wait and wait and wait. I know few people who actually are enjoying this weather. I have had enough and I think mostly because it does nothing for the mind, which I need to help heal the body that is currently unhappy.

I give up trying to find a 'normal' as I think being in constant infection is my 'normal'. I don't want this to be the case but I seem to have no control over what my body will do to itself, and I guess I never really had. Right now it is just one day at a time.

My last blog post was a rather upset one and though I don't usually speak or write like that. I feel my blog although public is also the outlet for the issues in my life and if someone chooses to read it and doesn't like what I have to say or how I am saying it that is not my problem. I will censor myself to a point but beyond that all is fair game.

As I am struggling with another lung infection and put on some shitty drugs once again that makes me feel like someone else is running the show, meaning my body parts, while I just watch them do strange things. Yesterday when I would try to scratch my cheek I would poke myself in the forehead, that felt nice. I also couldn't stand for more than two minutes without getting motion sickness. Today is somewhat better and they have switched me to a different medication so hopefully the side effects from the bad one will be gone in a few days.

This awful weather makes it hard to think of beautiful days outside but I do try to think of the good things that can come with warmer temps. I hope to find myself fishing again this summer. Although this time with waders in the stream as walking upstream in running shoes that stuck in mud every step was probably not my best choice, that and nearly falling in with my arm that had the PICC in it. This year a bit more careful, but more important I hope I actually catch a fish or two.

I would also like to go up north and spend sometime on a quiet lake. The times I have gone with the family there is nothing more beautiful and peaceful then sitting quietly in a boat in the early morning hours, or evening when the loons call and the air is clear and silent.

My husband is not a fisherman, he appreciates the serenity of the lake but sitting with a bobber lifeless on the water is not his version of a good time. We like to go up north to Duluth and beyond, enjoy the watching the boats, the sound of the water lapping the shoreline, and the outdoors.

Split Rock Lighthouse

Walks around the neighborhood, visits with friends, and few birthdays, wedding anniversary, and get-togethers with families are always looked forward to. Who knows what the summer has in store, we will wait and see and I will share with you the journey/s as life unfolds.

What are your plans this summer?

Courage

Sitting here in the early morning hoping that the sun does shine through the clouds today and it reaches the 50 plus degrees that is predicted. Although the way the last few days have gone I am less inclined to believed the weather man and carry with me three seasons of clothing and water protection just in case Mother Nature decides to continue her April fools joke as she has been doing.

I am not exactly pleased as pie today, in fact I am a little irked. I can't go into details at this time but in general I am frustrated.

Life post transplant has been crazy, to say the least, and I have come to accept this as the way my life will be from here on out. I, however, wish it wasn't but there is not much I have control over with all of this. But what makes me most irritated is that fact that I am re-writing my life. I have had to redefine what it is that I do with my life on a daily basis. I realize I have brought this issue up before but in light of recent situations I am thrust back into this thinking that I wish I didn't have to do. Of course just like any other situation it will work itself out and I will be back to not being so frustrated but here I am, smack dab in not knowing whether to run or sit and fight.

Never one to enjoy confrontation and being rather a quiet and reserved person I usually take my lumps, or as most say take the lemons I have been given and make lemonade. In this case I would like to take those lemons and shove them down someones throat, I know sounds violent coming from me. But there is a point when even this reserved chic would just like to up and punch someone.

My world was turned upside down on June 14, 2011 and no one will ever understand what it is like to not know from day to day what it is like to live with your own mortality. Most will never know what it means each morning from the moment you wake up and give your all. To trying to put some of the pieces of the puzzle of your life back together. To try and become 'normal' again, when your hair has thinned, your weight has dropped, your face looks like a squirrel with cheeks full of nuts, and your energy level about as high as a wet towel laying on the floor. No one knows how hard you try to put a smile on your face and move forward hoping for the best when inside you are screaming that you just want 'normal' you want some pattern to your day, feeling useful in any way possible rather than that bump in the corner chair willing yourself to have the energy.

Our worth as humans is defined in many things, for some in being a mom, others an employee, others a sibling or child. For some it is by the way they help or give to others, donating or volunteering their time. The list goes on it is different for everyone.

I have great support and I have some great projects I am working on to keep myself from going insane throughout this whole process and I appreciate the love and support from all those people, family and friends alike and they know who they are.

But to those who have chosen to knock me down when I am already low I say, you will not get the better of me, you will not take myself worth away from me because I have had to redefine who and what I am. Just know that I will do my hardest to make things better than they were before. Because the one thing I am is a fighter when the going gets tough Sarah gets going. So maybe I am quiet and reserved but when you have pushed my last button hit the deck because if I chose to stand and fight you won't recognize this girl!

Stand up for what you believe in because you never know when your fight is helping others who haven't had the courage!