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.

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.

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.

re·solve

[ri-zolv] Show IPA verb, re·solved, re·solv·ing, noun.

verb (used with object)

1.

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. 

 

Christmas 2012

Christmas 2012 is now a memory. All the planning, prepping, stressing, and wrapping are done. Whew. As I have gotten older the time between Thanksgiving and Christmas has gotten shorter, somehow and I believe Thanksgiving was actually early this year.

There is one word that wraps things up nicely for me, been with me my whole life and my Mom claims she has nothing to do with this word...Procrastination! We, us kids, get it from our father and she would be right. No matter how hard I try at times I never seem to finish anything until the very last minute. It wasn't until Dec. 1 or after that I decided to make many of my Christmas presents. Some of them didn't even get finished and so a gift was purchased but for those who did get something I made it was a pleasure to make them. Now if my computer wasn't being stupid today I would have great pictures to show you of the things I made. So, until my husband can solve my computer issue this will be a photo-less post.

My youngest nephew is four and a big fan of Star Wars, so in my searching with Google I found these cute little Star Wars finger puppets. Click here to see their cuteness. I also made him a pillow, here, it is a shield, and I found some monkey fabric and some contrasting fabrics for the other two parts. It turned out very cute and I still know how to sew. I needed my mom to set up the sewing machine as I didn't know how to get to zig-zag from straight stitch but I did okay. Considering I had to make my own pattern, it was a little haphazard but in the end I was pleased with the results.

I also knitted a scarf for my niece, who is 12, of which I didn't take a photo nor of my joke of a gift for my older brother. Being a Dr. Who fan and turning me into one I decided since I now own a stash of felt from my Star Wars gift I decided to make him a felt sonic screwdriver. Similar to this one here, but you can't have sonic screwdriver without a TARDIS, so I made that too but in the form of  knitted dishcloth, here. If you don't know about Dr. Who I highly recommend watching it, find it on Netflix but start with Season 1, 2005. Trust me you will think I am nuts but after a few episodes you just can't help yourself.

Anyway back to Christmas 2012 it was really great. We celebrated with my family over the weekend and had a great time. Food, fun, gifts, and most importantly sledding! It took all I had not to sit myself down on that red plastic sled and fly down the hill but I thought better of it and so I watched the kids fly down the hill and climb back up, time after time. I got tired just watching them climb the hill especially the littlest, four-year-old Kai. Those little legs got tired but he kept at it. I loved watching him and my older nephew, ten-year-old Cooper, go down in the sled together. Cooper was the pilot sitting up right facing forward with his legs outstretched using his arms as his turning force and Kai, face down stretched out in Coop's lap as they flew down the hill. Apparently he didn't want snow in his face. It was so cute and comical, I only wished I would have snapped a picture.

It was such a joy to watch the kids, and to be able to walk back up the hill myself only having to rest because my thigh muscles felt like they were going to  explode but my lungs did just fine.

These are the moments that life is about, watching kids having fun, great conversation and time spent with siblings and loved ones. Even though the gifts are fun to give whether made or purchased. It all comes down to love, family and friends. Those who surround us make our life beautiful and each of those moments spent with them is the greatest gift to receive.

Winter Wonderland

Here in Minnesota the joke is we have two season, winter and road construction! We have officially entered the winter season. Also if you are a Minnesotan you know that today it could snow and tomorrow it could be 50 degrees, or suddenly below zero, take your pick.

Last year, winter was something to laugh at for anyone who has lived here for years or their whole life they know that last winter was, to say the least, unusual. Unless you are an outdoor winter sport enthusiast or just love cold, damp weather then last year was a perfect winter. The only real problem is we, as in, farmers and crop growers, need the moisture. If last year was your first winter experience, wow you were lucky and no that is not typical. After a dry winter and even drier summer the snow yesterday was much appreciated. It also helps to put one in the holiday spirit when they aren't running around in t-shirts.

Yesterday after the first three inches of snow I decided in the beauty of it all I would take a walk. So I bundled in my multiple layers, hat, scarf, and not so appropriate hand attire, strapped on my Yak Track knockoffs and headed out. It was glorious! As I walked there was the scent of wood burning fireplaces in the air, kids were rolling balls of snow for their snow men and chipping away places for nose, eyes, and mouths. I saw the most creative snowman with a tiny bird house for a hat and evergreen branches for the arms. I also saw a group of kids putting up a whole family of snow people, it made me chuckle. I thought of Calvin and Hobbes, for those who are familiar you get my meaning.

I also saw kids jumping on their sleds and traveling down the smallest of hills for the thrill of winter sledding. In my day those hills would have been a bump, but beggars can't be choosers when you live in town.

With the snow clinging to the trees and the still of the day it was like walking around town in the days when there were no digital toys to play with, no two hundred plus channels to watch, and no xbox or Wii U. To see kids playing, and families working together, or going for walks was like days of yesteryear.

Growing up snow was the best part of any winter, when you are under the age of 16, snow is fantastic. Not only is there a chance of a snow day but there is nothing greater than playing in the snow. It always seemed that we had very few snow days when I was a kid even though we had PLENTY of snow. Back then it was like each snow fall was at least six inches, that was on the slim side.

Growing up on acreage there was a million things we could think of to do. I have memories of my brother and I making cockpits out of a snow bank, each in our seat with controls on both sides. Something tells me it was more my brothers idea and quite likely Star Wars inspired, I loved it. We also had some great hills to go down, or when we were less inclined to walk half a mile we would pile the snow off the back deck and create a run, that went off the back deck, under the clothes line, past the apple tree into what was at one time the garden. Each time down we went a little further. Seriously, as a kid, exercise is disguised as fun!

When we got our first set of tubes for sledding it was the most awesome thing. We could glide over snow like we were riding on butter. Occasionally ending in Sarah having some sort of injury, but well worth it. Of course as usual, I blame my brother. He really was the reason for most of my injuries as a youth, he doesn't recall most of my memories but I swear it to be true.

Our neighbor had a small pond that in my early years we would go down to skate on, I don't remember doing it too often but I do remember the time my dad made it seem as though had fallen with one leg through the ice - that joker. To this day he still get's a thrill out trying to scare/shock you, and he usually succeeds. Don't even ask about his April fools jokes!

I have great, absolutely great memories of winter growing up. Even our little dog Poopsie used to lift up her back legs and walk like an acrobat on only her front paws in the snow. Not only did she think she was a cat but a gymnast too.

So, even though the winter weather is awful for driving in, and then the whole cold factor there is great beauty to be seen and had in the winter. So, pull those twenty year old snow pants out of the closet, slip on your Sorels, or moon boots if you're lucky and go have some fun in the snow. There is nothing more beautiful than a snow angel. 

Thankful

Being at home as much as I am, and alone, I have a lot of time to think. This can be a good thing and a bad thing. When I have time to be in my 'studio' I keep the music playing just to drown out my thoughts.

Last week Wednesday afternoon I was sitting with a new doctor, a hypertension and nephrology doctor. My blood pressure has been high and my kidneys are working at about 50% of what they were before my transplant. So my current standing is this, diabetic, hypertensive, high cholesterol, kidney issues, and bone density which has decreased instead of increased as hoped. So never having met this doctor and he not having read my chart AT ALL, before coming in he was surprised to hear my whole story in about three minutes. What I walked away with other than three new prescriptions is that my life before the ventilator has become a blur. I am not sure if that is because that life no longer effects this one because I don't have those lungs or what. Every time he asked a question it was, 'I think before the vent' or 'maybe it was on the vent', I just don't know. Call it PTSD or just plain forgetfulness but how does one whose life consisted of such turmoil day in and day out forget so much?

I spend many days going between two thoughts, time on the vent and my new daily life.

Having been on the vent is such a long time ago it has been over a year since my transplant. I however can put myself back in that room in a heart beat if I let my mind. I have moments in time that I remember. I have memories of my aunt being outside my window across the street waving, that was priceless and also one of my best memories. I remember my grandma's last visit, and sadly her funeral via internet from my room as my brother set up so I could watch it as it happened. I remember when the panic would set in every afternoon toward, the end, as my mom would wash my hair, suddenly I felt like I couldn't breathe. The fear of having a machine breathing and being in control is scary. I remember the night RT Ashley sat at my bed side while I fought with the vent, feeling it wasn't in sync with me.

I remember the night before my transplant when the article came out in the paper, for the first time in months I felt calm and didn't go to sleep wondering when it would come. Chris and I had finished Seven Brides for Seven Brothers, Mark was my RT, and Nicole was my nurse. Thanks to my pastors for bringing me to a point of contentment too, I was ready to leave this earth if that was the plan, I was tired of struggling, tired of waking up at six every morning to the same routine, and hating every suction and every beating and every vest time. The best part about RT was the therapists, not all mind you but the good ones know who they are. The lack of control in everything was the worst, when you are always in control it is a nightmare to let go.

Skip forward 12 months. This past week being Thanksgiving and all about being thankful, I was blessed to spend the time with all my family this year. First meal back at my mother-in-laws house since Spring of 2011. This Thanksgiving my siblings and their children all came for Thanksgiving and I got to spend every day with them. I even had my brother, sis-in-law and the two nieces over for lunch and we got to do some artwork together. As I was moving about that day and up and down stairs I couldn't help but think how great this was and how lucky I was to have these days with all of them. I sometimes stop and wonder what would be going on if I hadn't made it. It doesn't plague me, but I do wonder. I also know that someday that will be the case, but I will cherish these moments. I will cherish the things like Kai saying the word 'her' instead of 'she', or the way he crinkles his face. I will cherish the way Josie always finds a way to be close, even as she gets older she isn't afraid of laps or hugs, or any form of affection. How Grae sits and reads a book so big I would have cried at her age if someone gave me it, but she loves it. The girls laughing together is like music. And Cooper the one who didn't get to stay, that boy has so much love in him and he is so sweet.

Each moment is priceless, and my family means the absolute world to me. I would be nothing without them, they have been through hell and back with me.

So maybe there I days I think too much, but I maybe that is a good thing. I get to chance to relive the worst part of my life but followed by the best part of my life. It may not be perfect but being able to have one more day is better than anything.

Defining Myself

I think I said at one point I was going to try and get better at posting. I think I will try that again, maybe I need a more specific plan. Such as plan a post every Tuesday or Wednesday. I can collect ideas through out the week. Goodness knows I think about ALOT of things, especially when I am alone, at home, cooking and or doing other things around the house.

At this particular moment I am realizing my laziness has caused me some discomfort. What discomfort you ask? I choose to cut up my Serrano chili without wearing gloves - oops. Today I have two doctor appointments so I am trying to get dinner in the crock pot, tonight's menu, Chicken Tortilla soup. I have combine two recipes, one from Pinterest and one from Ree Drummond. We shall see how this tastes.

Yesterday, as is every Monday, was transplant support group. I don't go every week, other things going on, like my MCAD class that was every Monday for two months. Sometimes I am just tired by 4 pm, so I don't go. But when I do go I feel good when I leave. I realize that support groups aren't for everyone. I started going, very infrequently, when I was on the vent. I was invited by my transplant buddy, George, so I went. The longer I was on the vent, and then when I had to leave my room only on the portable vent I went a whole lot less often. One gentlemen that I have gotten to know over the last year plus, told me the other day I had a very emotionless face when I was on the vent, or rather the same expression, possibly fear. He also told me he really thought I wasn't going to make it, and he is happy he was proven wrong! Each meeting has many similar people but then others who are past transplant recipients who come back for their check ups and others who are on the waiting list. I can't tell you how many people I have meet over these many months, but a lot.

I also learned something about myself. As I struggle with the realization that the Graphic Designer I once was no longer exists. Not that I don't do it, in fact I do, but I also have stretched my artistic talents further than just digital art and frankly I love getting dirty creating with paint, pencils, and inks. There is nothing like it. But being the CE graphic designer, in some way defined me, it was something I put my stamp on and it felt good, even though stressful at times.

I have had, since transplant, a hard time defining myself, when I was on the vent I had many conversations with my brother about this life I was living at the time, patient, CFer, unknown future. Since my transplant I have had a hard time defining what this new life means, and often times wondering why I received this gift, why I was given this chance when so many others will not be so lucky. And if I am not the graphic designer for CE, who am I, what am I?

What I am is a survivor, I have been given a chance to redefine, or rather finally define who I am and why I am here. The one thing I get great satisfaction out of is meeting other lung transplant recipients or those waiting. I realize that each one of us has a different situation, from the underlying health condition to the place we live in this country. But the one things that is the same is that it is a struggle to understand that someone will die to save our lives, and what will life be like with new organs. Will the pains, and difficulties with transplant ever subside. Those are the things that bring us all to the same point.

I have meet another CFer, who is walking the same path I did a year and a half ago. I can't do much for her physically but I can give her the encouragement she needs to make it through this. I think support is the greatest thing anyone needs when dealing with this kind of situation. She is in great hands medically. CFer's are already resilient people, they know how to fight with all they have. But that positivity is imperative.

So, back to what I realized. There is nothing I know more about then what I have gone through these last many months and my knowledge, however difficult some of my memories are can help me help others. When it comes to life I think that is what it is about, our relationships with other people. It is our responsibility to help others when we have the knowledge to share. I love being able to share, and in some cases ease people's hearts. I spend 45 minutes talking to a woman I had never met about her husband 5 day old double lung transplant, by the time we were done she visibly was more comfortable. I didn't tell her things would be perfect but did say, bumps were normal and time would improve things. I remember having more questions than answer after transplant, and I know what these people are wondering.

What I realized is that I am an expert, of sorts, in something I never looked to be an expert in. Sometimes we look so hard we don't see what's right in front of us. I am still not exactly sure how to define this, but I will figure out how to fully share this knowledge I have. It makes all I have gone through worth something, suffering is difficult when going through it but if there is something to come of that suffering for someone else, it is worth every difficult moment.