Catching My Breath

I don’t want to keep kidding myself, if I am, in fact, just kidding myself. I hope that makes sense. Do we ever really know if we’re just telling ourselves the stories we want to hear? Are we creating some grand narrative that only takes a hint of reality into account? Each lie we tell ourselves becomes such an intricate web in our consciousness that it becomes real. That’s delusional. Am I delusional?

Sometimes I feel so foolish as I keep saying “when I get a little stronger, maybe I can…” or “as soon as I’m not on oxygen…” It seems like I’m a broken record lately, even to my own ears. It must be painfully pitiful to listen to this nonsense as someone who’s heard my spiel so many times. And it’s become so routine to tell this same theme to everyone: “Yes, I JUST got out of the hospital AGAIN. I was starting to come around a little bit but I got tossed back a few steps. Once my muscles start getting stronger and once my endurance improves, and once I WIN THE LOTTERY OF HEALTH AND NEVER HAVE TO DO THIS AGAIN, I will be just fine.” Smile.

And for the most part, I really have meant it. I really did imagine myself back in good (a relative term) health, able to walk for miles jamming to my iPhone, dancing with good friends, laughing a deep hearty breathy laugh, and living a real honest-to-goodness-in-the-sunshine-kinda life. Of late, however, I’ve begun to seriously consider that this might be another good ol’ story that I’m telling myself in order to get me through the hard times. Memories that are only that- remembrances of a youth that I squandered on not knowing how tough things would really get. Maybe, quite possibly, I’m never going back to that life. And I’m terrified. Because I love to live.

So I don’t want to keep setting myself up for heartbreak. I don’t want to give up hope, either, because I know I have much more fight in me, but how much more do I really have? Sometimes, I’m not very certain. It’s a fine line to walk. How MUCH MORE?

Spending more time on the ventilator this past week opened my eyes to some new truths about my life and how it’s changing all the time. Some for good, some it seems for the worse. My lungs are taking in oxygen in very well and sound great, but now my body is having too much difficulty getting rid of carbon dioxide in exchange, apparently. It has to do with my kidney disease and other factors. I’m not even sure what happened. There are always multiple forces playing on each other every time I’m sick. There are lots of terms being thrown around that bring me to tears at any random point in a day, and each time I talk to a doctor who tells me a little more about this puzzle of mine that we’re trying to put together I just want to tune them out and pretend I’m invisible, I want to wish the problems away.

I don’t want to keep kidding myself. Because I love to live. So I won’t kid. I’ll FIGHT. That’s all I know how to do for now.

Earlier this summer, I was starting to grow worn out. Despite my best attempts to be an eternal optimist, I felt like I was smiling through gritted teeth. I cried, I screamed, I was miserable and unpleasant to be around. It was as if my world was crashing down around me; pieces of me fell away like bits of plaster. I tried to keep reminding myself that much of my life consists of “first-world” problems: having difficulty getting up from my plush, motorized easy-chair; needing assistive devices to walk to our fully-stocked refrigerator; having access to insured, quality medical care; or having to use our indoor plumbing in the middle of the night. I’m acutely aware that I’m very fortunate. I’m extremely grateful for my incredible family, who have nursed me back to functioning many times without hesitation. I’m blessed to have amazingly supportive, kind friends who cheer me on through the hardest times. However, after my 2-month hospitalization from March to May left me weaker than I had been in a long time, I felt like I could never catch a break. I was anxious and sad. I began to fear that my latest challenge (kidney dialysis three days a week) would be the straw that broke this camel’s aching back.

Then I made a decision to focus on the good things. I saw how many moments made my struggles worthwhile. The sunshine on my face, a joyride under blue skies, a cold treat from the Ice Cream Truck, or a long visit with a good friend; any of these could flip my attitude from dark to light. I’d forget that I’d have to endure kidney dialysis the next day and the cramping and extreme fatigue that comes with it. My memory would lapse when it comes to my inability to go for a simple walk or climb two stairs. When I’m feeling strong-ish and have limited pain, it’s not so hard to put on a grin. This is what people most often see and commend. But I’m no hero. A martyr I am not. I’m an ordinary woman doing the best I can with what I’ve been dealt. Many people have much more reason to lament their circumstances.

Most aspects of my life are improving now. Dialysis isn’t so bad anymore. I’m working with physical therapy and occupational therapy to improve my strength and endurance. I can get out of the house more easily and I’ve been taking full advantage of that fact. I even went kayaking on a quiet lake and paddled the entire perimeter! Things are definitely looking up, and I’m so grateful for that. I now experience contentment and peace more often than not. Some days are downright great! I will keep on pushing myself to get stronger and keep a positive outlook, because life is so much better when I do. Some say the grass is greener on the other side, but the grass on my side is green, getting greener.

Mid-February:

“Sometimes I still feel the darkness creeping in. I’m not immune to the icy fingers of depression. Though I have myriad reasons to bask in the sunlight of a fortunate life, I do find myself grappling with demons on occasion. They try to drag me into the shadows, remind me of loneliness, draw my attention to the worst of myself. And somehow I need them. Need to succumb to this melancholy. So familiar as to be almost a comfort, this nightmare wraps itself around me like a damp blanket. Who among us hasn’t felt such infinite sadness?

Tomorrow holds no promise, and yesterday brings about a haunting nostalgia that reminds me of the things I only now appreciate. What, therefore, do I do with today? It’s wasted. My hands and feet are tied down by the weight of depression. I can barely move, and I wouldn’t want to anyway.”

I did get over this depression early in March, thankfully, but wound up feeling physically ill during that same time. I grew sick with stomach cramps; deep, stabbing cramps. Since it came on gradually, then suddenly, I dismissed it largely a as minor incident until it grew worse. By the time I called the UW Madison Hospital, and reported my symptoms (including a fever) they told me to go to the local emergency department. I was in great pain in multiple sites of my body, but all the blood tests, etc. came back normal. That was good news, but it left us with no answers. Long story short: I was flown via plane to Madison.

While at the UW Madison Hospital, things grew worse and I was in excruciating pain. The doctors ruled out kidney stones and gall stones and tweaked some medications. I was told that my kidneys were failing so I had to stop taking the meds that helped me keep a good fluid balance. Without that medication, I gained 41 pounds total, and I found it incredibly hard to move at all. My legs and ankles barely bent enough to walk. At the same time, my bowels slowed to a crawl so my belly inflated painfully and only added to my misery. In a separate piece of Hell, I discovered that the ache in the right side of my face and neck was a developing ear infection. It would turn out that I had a ruptured ear drum and pseudomonas causing the problem. So when I say I was miserable, please know how true this was.

Now the problems have decreased one by one, except for the kidney failure. Because of all the transplant medications, my kidneys have been beaten up and are now angry. I have to do kidney dialysis a few times a week; this entails me sitting in a chair for 2-3 hours at a time while a machine cycles my blood to clean it and remove excess fluid. I’ll have to do this for the foreseeable future.

Having been in the hospital for over two months this time, I was nervous to go home. I’m still quite weak and need help performing simple tasks, but being home will help make it worthwhile. I’m just trying to stay positive and realize that through this all, my beautiful new lungs are working great. I’m reminded daily how blessed I am; I have a wonderful angel named Connie watching over me.

A culture’s capacity to act graciously, tenderly, and lovingly towards animals is the best indicator of that culture’s greatness and nobility. This is something we should all remember in our daily lives, for if we cannot treat the least of creatures with care and tolerance, is there any hope for the manner in which we treat each other? It shows the basic humanity of a person when they are gentle and kind to animals. And loving animals is a two-way street. The more you give, the more you get. The benefits of human-animal relationships are infinitely great.

I love all creatures, and I’ve had a dog in my home for almost my entire life. My family’s Pekingese-Poodle mix, Toto, was part of the family before I was. This is where I began to learn how to (and how NOT to) treat animals. Toto resented my existence as the new cuddly baby in the house, but I tried to love her as only a toddler knows how: I dressed her in doll clothes, put her in a crib, poked at her, squeezed her, woke her up, and chased her relentlessly. It’s a wonder that Toto never sent me packing down the Yellow Brick Road. The love for animals was already seeded in my heart, though, and as I grew up it broke my heart that Toto didn’t like or trust me. I didn’t blame her, but I began to want my own dog. A “fur”-ever friend, if you will. A trusty side-kick just like in the movies.

Taking me to an animal shelter when I was about 9 years old was a bad idea on my mom’s part. I was now old enough to understand how to care for a dog, and I found Freddy, an adult Hungarian Vizsla who’s squinting eyes were failing. He was older, not housebroken, and the greatest dog I’d ever seen. I thought I would DIE if we didn’t get to take him home. Alas, Mom vetoed that idea and I went home with a mission: get a Vizsla puppy and name him Fred. After about two years and three letters to Santa Claus, I discovered a giant, quivering box in our living room on Christmas morning 1996. I opened the lid and a red fireball of a puppy, complete with a green bow around his neck, leaped out and began licking my face. I was in love. It was my Fred.

Toto, however, was NOT amused. She looked at Fred with disdain, almost as if she held his status as MY dog against him. It didn’t help that Fred was rambunctiously charging at her, forcing her to keep moving about the house to avoid his attempts to play. Toto was old, ornery, and wanted nothing to do with Fred. We decided that it was best for everyone if she moved in with my Granny and Grandpa for her golden years. My grandparents loved and spoiled Toto to no end, and she lived a great life well into her late teens.

Fred and I were best friends, and he was like a son to my dad. Every day my dad, a lumberjack, would take Fred to work in the woods. He would run all day, come home, and still want to play with me. I taught him all sorts of tricks, including how to pull me in a sled or on my rollerblades. Fred was a very lucky dog; we gave him everything a dog needed and took care of him as if he were my human sibling. I learned a lot about unconditional love from Fred, who never held a grudge and always made me feel special by how excitedly he greeted me when I came home. He made me a better person. Fred was unstoppable, until he got cancer at age 10. I took the news extremely hard, as did my dad and mom. He didn’t live very long after the diagnosis, but he passed away peacefully at home. I’m thankful we weren’t forced to make the decision to euthanize Fred. He went on his own terms. For months afterwards I’d expect to hear the tags on his collar jingling, or see him laying on his bed in the living room, or find him wagging his tail for me when I’d come in the door. His absence was agonizing. A dog makes a house a home, and Fred left a huge void in our family. We had much love to give, and we knew we needed another Vizsla.

Instead of going to a breeder, we searched the internet for a Vizsla-specific rescue organization. We found a female, almost 2 years old, named Dakota. She lived in lower Michigan, not very far from where my sister was living at the time. Dakota was beautiful and vibrant, but she was wearing a shock collar in her photo and looked a bit sad. It seemed like our duty to rescue her, so we contacted the family who was fostering her and learned how to apply to adopt her. Although other people had applied, our experience with having already owned a Vizsla put us at the top of the applicant list. I also believe the rescue organization’s volunteers knew we were a loving, compassionate family that would care for Dakota better than any of the other applicants. We became ecstatic when we were notified that Dakota could become ours. We decided to change her name to Lily, and when we met her, we knew it was the perfect choice. A new, sweet name for our new, sweet dog.

Lily was anxious and a bit shy at first as we brought her home to my sister’s apartment. Over the next few days, she warmed up to us considerably. We were certified dog people, now, and Lily seemed able to sense this. She started to trust us, and she even behaved well on the 8-hour drive back up North to our house in Upper Michigan. The only anomaly was that she acted afraid of my dad when she met him for the first time. It seemed that he reminded her of someone she disliked. Thankfully, Lily was able to overcome this first impression and eventually she loved my dad just as much as she loved my mom and me. We became one big happy, whole family again.

Over the years that we’ve enjoyed with Lily, she’s been loved and spoiled like a queen. She has a plethora of toys, her own Serta mattress dog bed, she receives treats and quality food/water daily, she was taken on daily walks until her hips began to cause her too much discomfort, and she is cuddled with every night. We have always celebrated Lily’s birthday, made sure she was groomed and clean, let her live without a collar, and brought her to the vet for her yearly vaccines. We did this all out of pure love, and the love we received in return has been priceless. Lily makes us happier, stronger, better human beings because she has taught us many things about life.

So I find it very unfair that Lily is now suffering from heart failure at 12 years old. Her life won’t be nearly long enough, in our opinion. We were reminded of the short life expectancy of larger dogs when we brought Lily to her veterinarian. She had been acting strange, and we noticed slight changes in her behavior that only a loving, attentive family can. She seemed restless at night, was eating less, had a mildly distended belly, and didn’t seem to want to cuddle very much. Sometimes Lily just stared into space with a blank look on her face. This was not the dog we had known for the past 10 years. We knew something was quite wrong, but the vet confirmed it. Lily will probably not live for another year. Maybe only a few more months; it’s difficult to pinpoint how long any creature will live once diagnosed with a tragic illness.

Humans should, at all times, appreciate animals. Every creature has something to teach us. With our dogs, it was how to be better, more loving, compassionate humans. Our dogs found traits in us that they deemed worthy, and this made us love ourselves. We found characteristics in our dogs that we aspired to have, and this renewed us and made us better versions of ourselves. So, in this way, Mahatma Gandhi was absolutely correct when he said “the greatness of a nation can be judged by the way its animals are treated.” If we could enact this concept, the world might become the kind of place where compassion thrives.

Music is my drug. Notorious rap artist 50-Cent said as much; “press play, you ain’t gotta sniff it, shoot it, or chop it, roll it, bag it, or pop it.” Touché. My “substance” use is out of control. Many mornings, when I’m struggling to muster up the energy to rise from bed, I find myself playing an energetic tune on my wireless speaker system. Like a junkie, I require a “fix” before I can even place my feet on the floor. I need to get my blood pumping with a good beat in the same way an addict needs his/her remedy. A favorite song can really set the mood for the day, and I won’t say that it’s a scientific certainty, but I know that it works for me, personally. Dopamine and serotonin are nothing compared to the chemicals produced by a creative verse. My drug transports me to a spiritual place. Almost immediately upon having a beat pulsate its way into my veins, I feel better about the day ahead. Music is a good drug.

Look at my iTunes and you’ll find that my music selection runs the gamut from Neil Young to Nine Inch Nails and spans everything in between. I love ALL types of music. You could call me a “garbage head” because I’ll take any of it. Some may translate this into me being hypocritical because I’m not loyal to one genre. That type of thinking is ridiculous and is partly responsible for many of the problems we have in society today, but that’s a whole new can of worms for another time. I will stand up for the merits of almost any style because I believe that music is an expression of someone’s heart/soul and, as such, should be appreciated for the effort at the very least (much like drug use is an emotional outlet, albeit an unhealthy one, and should be understood for its own underlying reasons.)

I often quote music lyrics when I can’t find my own words to express myself. Many times, musicians are more poet than piper and have the uncanny ability to describe my feelings better than I could. It’s happened more than once that I had the notion that an artist perused my journals and used my prose for lyrics; it’s incredible to feel so connected to my drug. I truly appreciate the depth of meaning some songs can reach. Pain, anger, happiness, loneliness, passion, elation; all these emotions can be discovered within the lines of a powerful ballad. Musicians that are open about their real selves appeal to me because it shows their humanity; sometimes it seems that these idols are untouchable and perfect, but getting a glimpse into their lives through their poetry can level the proverbial playing field.

Every music style creates a different kind of high. Some music is like an opiate- it mellows the user and slows things down; it feels like floating in a lukewarm pool. It wraps its arms around you and promises to make everything all better. Opioid music comforts and pacifies. Other music acts like speed and throbs throughout the listener with a dynamic, nonstop vibration that makes one feel invincible; it’s like an all-night rave fueled by frenzied excitement and ecstasy. Speed music thrills and animates. Up or down, then? Pick your poison.

I get chills from my drug, and I can’t live a single day without hearing a few of my favorite anthems. Instead of pills, I have songs; instead of injecting, I dance. I sing along, smile, and nod my head to the beat. I’d rather use music than medications, and I’m severely addicted. I’ll take you into my drug-fueled world. Just press play.

*Disclaimer: I don’t condone drug use. These are simply analogies. Drugs are bad. Music is good.

With the New Year upon us, millions of well-intending people are re-examining their lives in hopes of creating a better version of themselves in 2016. Losing weight, quitting smoking, getting a promotion, and other goals are set forth for the next calendar year. As if upon the shot of a starting pistol, the great resolution marathon begins on January 1^st when the collective conscious of the nation wakes up to a fresh start at anything and everything. It’s a magical morning with many possibilities. How and why, then, do we go astray? Why do many of us lose track of the positive ideals with which we rang in the New Year?

I believe that the stress and worries of our daily lives greatly contribute to resolutions being left by the wayside. Often, our normal routines are difficult enough to maintain, let alone adding new challenges and changes to the grind. We try to keep up with chores around the house, our relationships with friends and family, work, school, etc. Then we throw in our new resolutions and require ourselves to work even harder to perfectly balance everything.

This is not to say that I don’t think New Year’s resolutions are a good thing. They’re a paradox in the way that the reason they’re so frustrating is the same reason they are beneficial. Resolutions force us to look at our lives and find ways to improve them; this can cause nervous breakdowns or epiphanies. People who embrace change easily will do better with resolutions than those that tend to cling to consistency, though everyone can gain something from simply considering what goals they might set for the New Year. In keeping with this idea, I’ve compiled a short list of some great websites with ideas for making and keeping New Year’s resolutions. Check them out and get inspired for 2016!

100 New Year’s Resolutions

http://bembu.com/100-new-years-resolutions

216 Things to Do in 2016

http://www.sequinaire.com/blog/216-things-to-do-in-2016

101 Creative Resolutions

http://atelierchristine.com/archives/4578/uncategorized/101-creative-resolutions-a-to-do-list-what-are-yours

The Ultimate Guide to Totally Nailing Every One of Your Resolutions

http://greatist.com/happiness/ultimate-goal-guide-new-year?utm_source=Sailthru&utm_medium=email&utm_term=Greatist%20Daily&utm_campaign=Newsletter%20Feb%202014%20Testing&utm_content=A

29 New Year’s Resolutions Ideas

http://daringtolivefully.com/new-year-resolution-ideas

100 Inspiring New Year’s Resolutions

http://www.realsimple.com/holidays-entertaining/holidays/more-holidays/100-resolutions

Now that I’m steadily recovering from my transplant surgery and subsequent, sporadic weeks in the hospital, I’m starting to look towards my future, especially the coming year. I feel hopeful and excited going into 2016. My life is no longer so uncertain, as per my health had previously dictated; my new lungs will allow me to live a lengthy, meaningful life. I know that there is a purpose for my still being here, and I’m trying to decipher what that could entail. Setting some goals for the New Year will help me stay focused on my emotional growth and progressing toward resuming a productive existence. I can’t wait to see what great things will happen in 2016!

The Journey Continues…

Things are quite a bit more settled than when I last wrote in August. Circumstances required me to be hospitalized again for a few weeks. I was really uneasy and anxious this time because I had grown too weak to do much of anything. With my huge 30^th birthday party quickly approaching, I needed to be recovered enough to first get out of the hospital and situated at home again. I worked hard, but progress was slow to non-existent. Even though I wasn’t truly ready, I got discharged and went home the week before my party. Back in my house, I was severely debilitated and deconditioned. I spent nearly all of my time in a recliner since I was virtually unable to walk or stand up. Still, I was dead-set on enjoying my birthday.

The party was AMAZING and there were over a hundred wonderful people there to help me celebrate both my lung transplant and my 30^th birthday. I really felt special just knowing how many people cared. I was wheelchair bound but I was still able to dance around from the chair thanks to some great friends who helped wheel me around the dance floor. I thought that this would be the start of a hospital-free future, at least for a while. I was wrong.

I wound up needing to stay in the hospital for a couple weeks sometime between September and October (by now, I’ve lost track of when/why each hospitalization occurred). If I remember correctly, I was discharged a few weeks before Halloween (my FAVORITE holiday). This was the most recent hospital stay. I’ve only been back to Madison for checkups since then, which is a great leap forward for me! So, that’s my last few months in a nutshell. I’m still working on my strength and endurance and dealing with some fierce lower-back pain, but I’ve come a very long way just since August. And if I may say so, I’m proud of myself.

Sharing this long, hard transplant journey through my writing has been quite a healing mechanism for my soul. I feel the need for my family and friends to be a part of such important milestones in my life and the only logical way I know to do this is by bringing everyone around the proverbial campfire to hear me tell the story. Perhaps this is a way to make the whole experience more real to me because sometimes I feel like this year has been a dream. I need only look at my scars, feel the cool air circulate in my new lungs, or remember my donor and her family, however, in order to remember that all of these blessings have truly come to me. This is REAL life, and it’s getting better every day.

Back into the “Real World”

Being such a fragile patient so recently discharged, my pulmonary team, the surgeons, and my coordinator decided that I shouldn’t leave the Madison area any time soon. On March 13^th, I was sent out into the “real” world to live at a hotel. Since I was still unable to eat normal food or drink liquids because of my vocal cord paralysis, I needed to stay in a hotel room with a kitchenette so I could prepare my own food and drink. We were fortunate enough to find a clean comfortable room in a good part of town, where I lived until I had to be re-hospitalized on April 6^th. It had only been about a week since the final two chest tubes had been removed, and I began having a great deal of difficulty with fluid retention in my lungs. I was increasingly short of breath, and my lungs had a small amount of air around them. These circumstances were obviously NOT conducive to the immediately spectacular outcomes to which I had aspired.

So on the 6^th, I went back to UWH, where my fluid levels were managed until I was back on track to recovery. The doctors also had to tweak some of my medications in order to boost my white blood count, and to control my blood thinners. It’s common to need to switch or re-dose transplant medications, and it’s always a balancing act between how the body reacts and how the meds affect it.

Until April 14^th, I stayed in the hospital in order to navigate the bumps in the road that needed to be addressed; afterwards I returned to the hotel in which we’d been living until I was FINALLY deemed safe to return “home” home to Iron River (called such since so many other places have unfortunately become like other homes to our family) on April 17^th. This was not to last, much to my dismay; by April 24^th I was having difficulty breathing again and my oxygen saturation was dipping rapidly. I rushed to Iron River’s local hospital, and was promptly set up for a helicopter air ambulance ride. When I arrived at the UW Hospital, I was put back on the ventilator in the Trauma & Life Support Center (TLC) for the FOURTH time. Given enough time and some changes in medications, my lungs began to cooperate again, though, so that I was able to be moved to the “normal” part of the hospital where I had stayed in the initial days of my transplant (the B4/5 unit).

We thought I was out of the woods, but we were incredibly mistaken. Apparently, at some point after Mother’s Day, I took a real turn for the worst. I began coughing up blood and needed to be moved BACK to TLC and put on the ventilator for a 5^th time (the pattern gets pretty monotonous here). This time, however, my body was laid face-down in a prone position in an attempt to take some of the pressure off of my exhausted lungs. I was kept this way from May 15^th through the 17^th while my family and doctors prayed that I would make it through another bout of illness.

I recovered eventually, and was moved back to the general care of B4/5 for a few days. After I was released THIS time, I moved into a wonderful place called the “Restoring Hope Transplant House”. Almost like a bed-and-breakfast for those who are involved in the transplant process, the house was a comforting place to regain some normalcy in my new life. It would be much too difficult to describe how incredible this house was/is, so I will simply note that I caught glimpses of the great life to come while living there. When I was allowed to leave Madison again and make a go of it in Iron River (June 16^th) for the second time, I really missed those who run the house because they were my family now.

In order to spare some of the tedium of the revolving door narrative of my time in and out of the hospital, I’ll simply note that I’ve only been home to Iron River on three separate occasions since my transplant was completed in February- while I’ve been in the hospital SIX times, if I’ve counted correctly. Each time I’m hospitalized, my doctors edge a little closer to understanding what is going wrong just when I believe I’m improving. However, it seems that before I can fully recuperate (or even partially regain some significant measure of health) I am knocked down again by some unforeseen complication. Such has become the way I live, but only for now. Anyone who is familiar with bilateral lung transplants (especially for those with Cystic Fibrosis) tells me that the first year is hell, but after that things do improve and life is truly miraculous. I cling to that promise every moment that I’m awake.