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.