Sunday, August 18, 2013

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.  


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.

Friday, May 17, 2013

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.

Sunday, April 28, 2013

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
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

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

Wednesday, April 24, 2013

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.

Thursday, April 18, 2013

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!

Thursday, April 11, 2013


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?

Sunday, April 7, 2013


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!

Thursday, March 28, 2013

Marching into April

My last post I mentioned scrapping the acrylic painting I had been working on and switching mediums. I did just that and it was a treat. I did a watercolor. What I love about watercolor is the layering, yes one has to think backwards in a sense. I have to know where my lightest spots are before I get to my darkest spots and unlike acrylic whereas if you screw up you just paint white over it, watercolor does not have that option.

I never understood watercolor as a kid, I always hated how they all would get muddy in the watercolor pan and finally every color was brown, various shades of it for sure. It wasn't until college that I realized the beauty and versatility of watercolor. Layer on layer can create such beautiful hues, tints, and shades.

Since I love to paint flowers, which I can only gather is because the colors can be so rich and the textures so varied. Within a flower can be smooth and yet sharp, transparent and opaque, lights and darks together. Mother nature is wonderful at putting colors and textures together, and full of inspiration.

So, as usual I painted a flower.

Watercolor: Iris

With Spring finally giving us some sign of hope I think flowers are also a good way to get into the spirit of the time of year where we see flowers begin to bloom, grass turn green, and trees leafing out and one of my favorite things, crab apple trees in bloom.

I went for a walk in the sun yesterday and marveled at the running water in the brook near our house. The geese sitting softly by the waters edge and I smiled to think how beautiful that moment was. I was there to enjoy the beauty of the skies, the birds and the water. I could feel the coming of Spring and the birth of a new season.

Wishing you all the chance to re-bloom this Spring with a new spirit.

Wednesday, March 13, 2013

Que Sera Sera!

Been awhile since my last post. I never know if that is good or bad, that probably depends on what my recent posts were about as to whether things are better or worse. Today I like to use the word 'stable'.

A couple weeks ago I had the best week of recent history, I would actually have to say years. It has literally been years since I have had a great week. With my old lungs I would be happy to have a few good days in a row before the infection would return, and on top of that it wasn't like I was breathing with two full lungs. Even this past summer when I felt good before the infection settled into my lymph node and lungs I had great days but I also still was dealing with pain from the transplant and I would have one or two good days, or partial days before I would 'crash' as I like to call it.

It has been just over two months since my big surgery to remove the Phlegmon, let's call him Phil for short. Phil really bummed me out until we removed him and since then even though it was extremely difficult recover, and still not perfect, it has improved. It is nice not being on IVs four times a day and instead only once, or rather twice after this week. I have had coffee with friends, gone to events, been shopping, crocheting my little heart out, painting, illustrating, and designing. I literally don't have enough time some days.

There have been some crappy days since the fabulous week but nothing that I can complain too much about. Except for the fact my incision from this last surgery opened up this past weekend. It is ugly and gross but the surgeon is hoping the fact it is draining it will heal. He thinks due to my lack of fat, I irritated the skin with my boney shoulder blade by sitting against an unpleasant, not soft enough, surface. So more antibiotics and hoping and praying they do not have to open it up and clean it out to then pack it. That idea just sends me over the edge.

Other than that I am still doing reasonably well. My spirometry, or numbers are going up, slowly but at least they are moving. No where near were I was before this last surgery but having a muscle now wrapped around my lung the Dr. doesn't feel I will reach back to where I was. I however won't give up on getting close to that, just yet.

Right now as always taking things in stride and looking outside wondering why Spring has to take so long this year. I love the beauty of this white stuff covering the ground and clinging to the trees but there is a point at which it just needs to disappear and bring on the green. I need to get back outside. I am not a winter outdoor person, which I am sure I have mentioned more than once. I don't mind walking outside if there is no wind, but that is a rarity around here. There is no comparison of walking the treadmill and walking the hills around home, honestly not even close. If I am still going to try and run a 5K in my life I need a little more encouragement from Mother Nature.

My work space
My goal this week is to try a new painting. The one I have been working on, a commissioned piece, for the last six months has me so ticked off from overworking it for the second time that I had scrapped it all together and trying a different way. I will just white over the old one and use it for something else down the road. Sometimes starting fresh is the best option, and remembering to walk away when it gets difficult because trying to continue only makes things worse. That is probably why computer graphics are great, you screw up or don't like you just hit undo, paintings are not that easy.

I am off to start my day, not sure which direction first but maybe just finish my tea and enjoy the sunshine that has graced the skies this morning. A peaceful moment.

Wednesday, February 20, 2013

The Glad Game

I think I have written before about Pollyanna* syndrome, aka, always looking at the bright side. If there was an award for an individual with the most Pollyanna in them, that would go to my father. Of course as luck would have it this person writing is probably close to second place.

I will admit there are times, like when lying in bed on a ventilator thinking about every breath, that you wish the little Pollyanna in your head would just shut up already. However, you also realize that Pollyanna is probably part of what kept you going for those months, and frankly for the last year and a half. Not that Pollyanna syndrome hasn't done me well basically my whole life, but there are time I just want to punch Pollyanna in the good old happy self and move on.

Well I have been trying hard lately to let my Pollyanna shine and it hasn't been easy. The best time is when I am at the clinic and I see people worse off than me and I realize how lucky I am even though right now things seem rather frustrating.

Pollyanna is also how for all these years I have been able to fool people, I don't mean fool them like take their money. I mean it more in the sense that they think I am all cool, collected, feeling well, and happy when underneath I am a mess of the greatest proportion. Know anyone who has lived with an illness long enough and they develop 'coping' skills. For me, wearing make-up and the right color was my trick, apparently I still do without thinking sometimes.

But I have decided as of late, to screw trying to make all the packaging look pretty. I mean really unless I get myself a Brazillian butt implant and a boob job there is no hiding what I have had to endure lately. I also decided that makeup was just a waste of time. Of course maybe I would feel better if I actually put some on but if you see the real me, then welcome to my world.

I have also taken it upon myself to avoid people when I am in a bad mood or unpleasant situation. Some days it is just too much to pull Pollyanna out and share her with the world. Some days I just want to say no, I don't want to have to talk about my transplant, or my recent surgery or answer the question "How are you?". Not that I don't appreciate the care and concern it is just that for me a question  like that can only be answered with "I am doing okay." Because any more than that response and you will be stuck with me much longer than you planned and learn more medical terms then you ever thought you would hear when asking one simple question.

So next time you find yourself in a unhappy, unplanned situation that may be less than ideal. Remember, things can always be worse, and that there is something good to come out of the bad.  Pollyanna says so!


Pollyanna - Refer to the Disney movie circa 1960's with same name, played by Hayley Mills if you are unfamiliar with this term.

Saturday, February 16, 2013

The Yearbook

We have been organizing here at home, and Chris had moved around our book shelves. For the fun of it I took my high school year books off the shelf, brought them upstairs to look over and walk down memory lane. It has been interesting, eye and mind opening travel through time. I looked back and got to thinking about what life was like 18 years ago when I was graduating high school. Looking back only to look ahead.

My sister is seven years older than me, so by the time she was leaving home I was still only 11 or 12. What I remember of my sister when I was little and she was in high school is that she was always busy, she either seemed to work or be with friends. On the weekends she would sleep forever in the morning, I just wanted to her to get up. I remember always asking my mom if Tricia was going to get up soon. I liked having her around. I also recall she had the best hair, so perfect and I thought (well still do) she is absolutely beautiful. I always wished I could be as pretty as her. Seemed like boys really liked her and she had a date, often. But she really didn't like high school at all. She wasn't involved in extra curricular activities, like cheer leading however she was in the band for much of high school. I kinda think her goal was to just make it through and get out to live life.

My brother is two years older than me, so we were in high school together for exactly one year before he went off to college. My brother was good at school. He could absorb any concept and retain it with little thought, didn't really need to do homework and was involved in extra curricular activities and was part of the most awesome drum line. He was kind and generous, and he was liked a lot by pretty much everyone. Teachers loved him. I was lucky enough his senior year to ride to school and walk in with him, he wasn't afraid to be seen with his little sister. We would walk in past the cafeteria over the cat walk and then we went our separate ways, not seeing either again until band or later in the day. He liked school, or at least seemed to as it was so darn easy for him.

Then there was me. I didn't like school, I didn't hate school. And after looking through my year books I realized something, I tried to hide at school. My favorite parts of school were my friends and band. I avoided eye contact with most teachers and always hoped that I would not be called on. My first year of high school I was still that chubby yucky girl that I prefer not to remember. I didn't like myself very much but felt better about myself by my junior year. I was 'Tony's' sister, that is what I remember being, and I always thought people wondered how that was possible. I used to look at my year books and remember all the icky feelings that came with high school, feeling inferior to those who had better clothes, hair, were much prettier, and of course smarter.

I frankly hated those memories, until this time. I think Facebook probably had a bit to do with that. I follow the lives of many that I went to school with. High school is a terrible time of life, trying to find who you are, thinking you are better than others, or less than others. You think you are smart and old and wise. That is far from the truth, 18 years since high school graduation and maybe I am not famous or rich, or even living the fabulous life that I had dreamed but I would guess there are many others that feel the same way. We all do the best we can with what we have.

Remember when I said I hated being that chubby girl in high school, today I would give just about anything to have the chubby body back. When I hear myself say, "I wish I knew then what I know now," I realize I am turning into my parents. To anyone who ever thought or thinks high school is the best time of your life, you will be wrong. Though maybe it was fun and free trust me there are more things ahead than you can ever imagine, some good, some bad but each one of them will be what makes your life. When you can appreciate that, then you can say 'this is the best time of my life'.

Friday, February 8, 2013

A square peg...

The last two days have been pretty awful. I have had a hard time staying awake or doing anything that requires moving off my rear end. I finally made it back to the treadmill today hoping that would help, so far not so much.

My kidneys are very unhappy with the antibiotics they put me on for the last month. I am waiting for the numbers to drop back down. So far I have not had luck but I am only on day 1.5 of no evil drug.

The hardest thing post transplant, aside from this terrible bump in the road, was not having the daily work/job to define me. Given it isn't like I felt great all the time to have a job but at this point in my life what defines me is or was what I did each day.

I never wanted to be defined as the 'sick one' or the CFer, I didn't want my disease to define me and I didn't want it to rule me, however it did - in every way possible. Now I have moved from CF on to transplant. But I really don't want to be defined by transplant. But don't get me wrong transplant have given me a lot, mostly a bunch of great people and a lot of love and support, but that doesn't take care of me daily. I have been thanked for helping other transplants and being so positive, even through all my ups and downs. And I will continue to be because everyone needs to think  positive for a life changing event like this, negativity will get you nowhere.

I miss however being defined as a graphic designer. I miss going into a building where I get to spend my day with a variety of people, all their own person with their own life and background. Laughing, sharing, and most importantly creating. And if I may toot my own horn, I was damn good at the job I did. I worked my ass off even when I felt like shit, going to work with a collapsed lung, going with bleeding lung, going with oxygen strapped to me. Because I loved what I did and the people I did it with.

Today I went back into the studio at home and I felt like an 8 year old in art class, except no one told me what to do. What I wanted to create came out as if I didn't know a thing about art. I ended up coloring circles. Maybe tomorrow I can color squares, if I am lucky.

I need something in my life to define me and something that will also help me pay the bills. I guess in life people just feel like they need a purpose outside of themselves. I don't want to be just a wife, I don't want to be just a sister, daughter, or aunt. Even though I love all those things and cherish them they are different than defining the me, that is what I do, or make.

Until then, geometric shapes will have to keep me occupied.

Wednesday, February 6, 2013

Rx: Laughing

I was at the clinic today, follow up for my long vacation at the lovely place I call the Spa. Somehow even giving it a fancy name doesn't make the place any more tolerable. Since my transplant I haven't had too much trouble going into the hospital. Sometimes it is actually okay but there is a difference going to stay when you have  minor things wrong that require only a couple days versus a thoracotomy that requires a month long visit.

By the time I left I was ready to climb the walls, between that no sleeping and crappy eating and or nausea it was in no way shape or form fun. Add to that a medication that makes my tongue numb, my skin itch and my kidneys do backflips and it gets even worse. So needless to say even though I am still on the evil drug from hell until Friday I am happy to be here.

Today at the clinic I had my CF nurse visiting with me. Since transplant I don't get to see her very often unless I am in the hospital and she makes a point to come visit, which she is good at doing. Or once a year, about, when we deal with my CF stuff that still exists even though the lungs are no longer CF lungs.

So in this room was my CF nurse (of 17 years), the new CF nurse, my Doctor who has not only been my CF doctor for the last 12 + years but also my transplant doctor, and the troublemaker my Dad. When the good Dr. walked in he said I looked better and had more color in my face, but also said the fact that I chose to wear peach was a nice play on my part to give me more color in my cheeks and my dad says well that and she's been tanning. One thing about transplant, the sun is evil and should be avoided as cancer is a very serious risk. So I turned to my dad and told him he should not tell such lies as I will get a serious talking too. Anyway, it was so funny how it went down that all of us were laughing, including me.

My CF nurse said how great it was that I could sit there and laugh, and how she wished she had a video of me before transplant laughing and now so that I could tell the difference. I proceeded to tell them all that the one things I remember post transplant was laughing and how that was the best feeling ever.  I remember all to well how I would avoid laughing and just smile, or say 'that's funny' so that I wouldn't laugh and lose my breath with my old lungs. With Cf lungs the mucus takes over and chokes you, thus causing you to fall in a heave of coughing fits shortly after the first laugh comes out.

Even today with my shortness of breath I love laughing and my husband tells me how much he loves to hear me laugh. It may seem small to some but laughing is such a great reliever and so good for the body and mind.

Have you laughed today? If not go find something that usually does. For me even watching a small child giggle is all I need.

Sunday, February 3, 2013

Coming Home!

I am sitting at my dining room table watching the red bellied woodpecker decimate the suet hanging on the deck, and it is beautiful.

This has been quite the month, my last post was New Year's resolutions and so far I had about three days where I did my great things each day in a jar before I ended up in the hospital. I have been home less than 24 hours at this point but I am super happy to be here. Not as happy with how I feel but I will continue to hope that things will improve.

There have been times off and on through the last months and especially earlier in January that I wished I had never gone through the transplant. It has been one hellish journey at times and this last month tops it all. I had hoped I would not undergo a surgery anywhere near the caliber of my transplant again and I had all hope that I would never have a chest tube. Well that was not to be. A thoracotomy and two chest tubes, not to forget the drain tube, later it was what I wanted least that I got. Right now my future is unknown and that scares me but as I sat this morning doing my meds I realized something, I really have had some great things since transplant that I wouldn't give back for the world.

First is my time on the vent. An awful experience but it gave me the chance to spend time with my brother who up until that point I saw maybe once a month. I also got to spend every day with my parents. Not all families are as lucky to love and respect, or care for each other like ours does. We are a united group. Not to forget all the great people who have given me hope and courage, and prayed for me.

I got the chance to take a printmaking class and live with my brother and wife for a week, I got to spend many days with my friends at their pool just gabbing. I went for many many many walks, unaided of which I haven't experienced in a decade or more. I went fishing with my dad, to a play with my Mom, sister, and niece. I went to Duluth and the cities many times with my husband. I have been given the chance to practice my artwork and buy the lino scribe for printmaking at home. I have seen beautiful sunrises and sunsets. Two Christmases, Two Thanksgivings, and my 35th birthday. Spend time with extended family that I hadn't in years.

As hard as this has been and is I should never again say I regret having the transplant because those things listed above would not be if I hadn't. I realize this time I have is probably not going to be 10 or 20 years, but each day I get whether good or bad is another day here with the ones I love. Even if it is sitting at my dining room table watching birds eat. In my book it's worth this moment.

Tuesday, January 1, 2013

Bring on 2013!

It is that time of year when we once again pull out our list and make those resolutions. Many of which we will forget or just plain not do because, well I can always try again next year.

Defining resolutions takes me to the base of the word, resolve. Thus.


[ri-zolv] Show IPA verb, re·solved, re·solv·ing, noun.
verb (used with object)
to come to a definite or earnest decision about; determine (to do something): I have resolved that I shall live to the full.
So I tell you here and now my goals and hopes for 2013. 
First: There is only so much we are in control of in our lives. We can control who we are and how we react to certain things and thus one of my goals this year is to have a thicker skin. If only that were an easy task, it is not. I have never been one to take criticism well which is a problem when you are an artist, as criticism both good and bad, is essential to becoming better at something. 
Objective 2: Organize, pitch, evaluate. 
Pitch/Donate items. I am a bad one for holding on to things that have little use or have sentimental value only to myself, but no real use factor. I agree there are certain things that have sentimental value that should be kept, like my grandmas antique watch, but then there are things like the stuffed animal from 9th grade given by a friend that has no value and is just taking up space. There are clothes that have been worn twice in the last three years, maybe that item should be sent away. 
Organizing is a huge key in any house and some days I just want to scream at all the things that lay around homeless and in my way. And why oh why does there have to be so much paperwork? So, I have plans to tackle the mountains of paperwork that eye me everyday by finding a better sorting system, and filing system. Our filing cabinet overflows and it needs to be purged. I always fear throwing out the wrong thing but I also know there are websites that tell you what is really necessary to keep. 

Evaluate is to take a look at my life, see what I have been doing right and what I have been doing wrong. Whether that relates to personal relations or household operations. I know both need to be addressed. 

Numero Tres: A friend and I have also decided, thanks to something I saw on Pinterest, that each day we will write down one thing we are thankful for. This must be done everyday whether it was a great day or a bad day.  We have decided that in 365 days we will take out our 365 sheets of paper and read through what we was good in 2013, each piece of paper will also be dated. I recommend this idea to each and everyone, there really is good in everyday. 

Objective D: As always I will continue to do my best with my health. I will keep up the exercise, keep up with the doctors, and always put my best foot forward.

Resolution cinq: Professional success goals. This last year has been such a roller coaster and I seem to keep losing focus on things. I realize this year might be just as up and down but like trying to write on the school bus and your handwriting is illegible from all the bumping around, practice can help make perfect.  How do I plan to do this you may ask? I am starting a new adventure or rather a new blog. I had a great name for it but someone else out there thought of it before me, so back to the drawing board. Which ironically is what my new blog will be all about...creativity, discovery, and artistic expression. I am not exactly sure of the direction but I do believe I would like to document the projects I will be doing and photographing the process. Whether it be a painting, printing, illustration, knitting, or sewing you name it I will try to document it. I think it is a good way of keeping me focused. 

Finally: My biggest goal of 2013, sell my art.

What are your goals for the New Year? Whatever they may be, I wish you health and success in the whatever you do.