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!

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.

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.

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.

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'.

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.