Wishes and Blessings

A new week has set in and with it so has reality. I have signed a release of information form for St. Louis Children's Hospital. Tomorrow I will sign 3 more from Methodist Hospital, University Hospital, and Methodist Specialty and Transplant Hospital. From there all my medical records will be sent to Barnes-Jewish Hospital in St. Louis, MO. We are putting all this information into their knowledgeable hands and minds. And while most 22 year olds are wishing for a new iPhone, Kindle, or just lots of cash, I'll be wishing this Christmas that these doctors miles away see something that my doctors have yet to find. A treatment and a possible cure; that is all that most of my family and myself want this Christmas.

People say depression increases during the Holiday season and I certainly see why. It isn't what you were expecting in so many ways. It's the end of the year and there are inevitable shortcomings and I have no shortage of those. I am still not well, I didn't complete the past college semester, people have disappointed me, and so on....

But to counter all the sadness we may face at the end of a long year, I have to focus on what does matter the most. I am alive. I am alive in my smile and my laugh. I am alive with my little dog, and with my friends, and with family. I am alive to get better so I can get back to everything that I know I will be great at. That is first and foremost in my mind. I am so blessed to still have this life. Cause it's still an opportunity to make things/love/memories happen until my heart stops beating. And I try my hardest not to focus on the people that have let me down when I know that I have so many wonderful people in life that haven't. Friends, my sorority sisters, my ACTUAL sister, my parents, my brother who has concern for every aspect of my health, my sister-in-law that I feel like I can always talk to and be real with, my constant prayer warriors who probably pray more for me than I pray for myself, and of course you know I'm going to mention my sweet dog. My little Abel who has healed more pain and melted away more anger than he will ever know just be being a presence in my life.

With these records being looked over, my case being considered, and the possibility of going up to St. Louis looking more and more realistic, there is a natural response to feel nervous. Traveling, hotels, doctors you've never met, in a hospital you haven't been inside for 10 years. But that's what the paragraph above is for: to remind me that I am blessed and I am loved. That is enough comfort to get me through these scary times. That, and of course, my faith in God.

In this season, I remind myself that Mary had to go to Manger in Bethlehem to deliver her son. This was obviously not her ideal scenario. She never pictured delivering her firstborn this way.

But maybe God's plan is just as mysterious for me. I may have to go to St. Louis and see unfamiliar faces, do unfamiliar tests. I'll feel uncomfortable, I'll feel scared. But possibly in the end, something great will come of it. I can only have faith.

live with hope

I had a weekend in Austin that was packed full with plans to see my sorority sisters and favorite frat boys. It became clear to me that by doing the things which gave me the most joy, I wear myself back down to not being able to those very things. I feel so high driving up to Austin and so drained driving back home. Even a few days on my own prove to me that despite my best efforts, I am not better. Being completely responsible for myself and my high maintenance body just reminds me how much I still need help. Then, what I think is a realistic goal to claim my independence, is pushed back once again. It becomes slightly depressing that the healing is so slow or that it has possibly plateaued. Sadly, this plateau is not one that I am satisfied with. I cannot live where I am constantly gasping for air doing simple tasks. I cannot live huffing and puffing trying to keep up with my friends as they shuffle down 6th street. Something soon will have to give in. A change will need to occur.

And in all this frustration, I have some inspiration from a very unlikely source. Elizabeth Edwards is not someone I have a lot in common with. We have very different opinions on almost everything. However, she too, has been suffering with a critical illness. Today, she posted this on her Facebook page:

"The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful."

So as I continue to struggle and suffer with my disease, I am reminded to live with hope and not be discouraged in the coming days, however many there are left for me. If a woman who has suffered this much can utter these words, surely I can try to live it out.

Christmas Photoshoot. Burkholder-ized

One thing I've always loved is the idea of sending out Christmas cards. I sent my own out a several years ago and in years past I've sent out Christmas boxes full of goodies to friends. After all my recent hospital stints, I've become more pale than Casper the friendly ghost and all the steroids have made my face puff up like a balloon. When I first got out of the hospital after the pulmonary emboli, I realized I was working on a sweet unibrow and I was back to fitting in child size clothing. Basically, I looked like some sort of tunnel dweller/ troll. I needed to feel refreshed. I needed to feel pretty. What better than a photoshoot? I could send out a Christmas card of my sweet puppy and myself and use a professional who would know just how to make me look and feel like a young lady once again. And my mom knew the perfect person.

My dad, however, also knew the perfect person: himself. Don't get me wrong. He takes really beautiful pictures of wildlife and even takes cute family pictures. But I'm picturing myself morphing into Kim Kardashian here and so I'm not sure if he's the right man for the job. But, we decided to give it a shot.

The first pictures I can honestly say were a disaster. Those who know me also know I am somewhat awkward when it comes to most everything is staged or feels unnatural. Well imagine me in a stiff back chair placed behind our Christmas tree, holding Abel in one hand and a stocking in the other, trying to make sense of it all while my dad makes barking noises to get my dog's attention. There's this whole scared/happy asylum face going on in all those. DELETE!

So then we move outside. By now a 5 month old puppy is completely fed up with being held and wants to play. At this point, the former America's Next Top Model addict in me decides we need to re-work this whole idea. If I'm not getting my Kim Kardashian photoshoot, then we need to go a whole new direction. Let's just do crazy action shots. Make it less about the pretty and more about the personality. It took a while for my dad to catch on, as he was still insisting that as I'm playing with Abel, I stare directly into the camera. I personally think the idea of Christmas card intently staring back at you is crossing over a little to the creepy side. But eventually, I think he got the candid feel I was going for. He then insisted I lay on my stomach and use my elbows to prop myself up. If you've never been in my backyard (yes, this exotic shoot took place in the backyard), it's somewhat on an incline. So I'm laying down on a hill, using only my elbows for support and being told to move in different directions by my director/ father. I felt like I was in one of those boot camp drills where you crawl through the mud except in less mud and much more expensive clothing. I tried to voice my complaints about the discomfort but my experienced photographer assured me that "this is what models do".

With Abel and myself at eye level, the pup decides he wants to go in for some kisses... which turn into bites... which turn into what I can only describe as full on head-butts. Eventually the little guy clocks me in the mouth and I cuts open the inside of my lower lip. This is getting less glamorous by the second.

At that point, I ask, "Can we be done now?"

and I get a pleasant, "Sure we can be done whenever you're ready" from my dad. I'm expecting he and I to go inside and look over the pictures at this point. After a few moments of standing over him, though I realize that while my photoshoot may be done, Abel's is far from over. So I scurried inside and waited for the true top model to finish his session.

In the end, the pictures turned out great. I have nothing to complain about and a few memories to laugh about. No, I don't look like a celebrity in the pictures. But if you know me, you know that I'm the furthest thing from a celebrity or a celebrity wannabe. I'm a simple girl who like to carry around her dog, play with her dog, and brag about her dog. So if we were going for authenticity in this shot, then I have to say, I really underestimated my dad. Cause he got it just right.

Don't Call it a Comeback. Really, don't...

Welp, Christmas sure came early for ya'll. I'm baaaack. It's for several reasons, I must admit, but the point is the the blogging bug has bitten me again and so here we go. 4:46 am and desperately awake. Let's do this thing.

Thanksgiving has passed and Christmas season is upon us. I was lucky enough not have to been at one of those gatherings where we have to go around the table and say all the things we've been thankful for in the past year. Trust me, I would have been Debbie Downer in that crowd. Since I don't yet have my own reality show I'll have to fill you in. I had a really epic July 4th where my lovely friend Matt McCabe and I made what was raved as "the best guacamole ever", my equally lovely friend Omar and I came up with a deadly strawberry margarita recipe which later led to him having a Harry Potter-esque scar on his forehead. And of course, someone stood atop a patio table at Cain and Abels and sang Lee Greenwood's "God Bless the USA" for all to hear. A truly great celebration of America but before sunset, I was calling it a night and gave my friend Jen a hug goodbye as we parted ways on 22 1/2 St. to retire. Sadly, July 5th is not a holiday and I had a test the next day.

To my surprise, that walk to class the next morning was not as it had been every other summer morning prior to that. And I'm proud to say I made it to class every day (except one. This is an honest space.) . I noticed feeling just slightly winded on my walk. I try not to be hypersensitive so I went on with my day, but did mention it to my mommy in one of our semi-daily phone conversations. It wasn't even a week later that my breathing was substantially worse and I found myself concerned enough that I felt I needed to be seen by my doctors back home immediately. Unfortunately, I had a final on Saturday morning. So I packed my car, got my whole self ready, and took my Weather and Climate final in record time simply to get out of Austin and get some answers. All these months later, I'm still not sure we have any more than I did that day.

Transplanted lungs can go through a process called rejection. But it's a process that usually comes over months, or even years. There's a significant drop in oxygen saturation. There's usually fever associated. I had none of these things. The decision was made to be proactive though and start treatments for lung rejection which sounded simple enough. Taking my usual 5mg of the steroid prednisone and increasing it to 40mg, slowly dropping it down week by week. And a 3 day IV infusion of an even stronger steroid called solu-medrol. Not my favorite thing to do, but let's fix this. I have a life to get back to. Class in the morning, gym in the afternoon, law library sessions during the week, downtown adventures on the weekend. My senior year had a great flow to it so far. So while slightly irritated by this brief medical bump in the road, I was in no way discouraged. It wasn't until coming home from a day at the hospital that I my life really felt like it was changing.

If you are a real dog person, you know your dogs' routines. For our Furby and Clairebelle, they always are waiting to greet us at the back door when we come home, anxiously jumping to get inside and sprawl out on the cool tile floor. On August 4th however, there were no dogs at the back porch. Instead I looked through the clear glass door and saw a turned over water bowl, marks all over the glass, and feces. Something was not right. As I ran outside I saw my little Clairebelle laying lifeless in the yard and simply collapsed in grief, screaming to my mom, "something really bad happened to our dogs". It was quickly obvious there was nothing we could do for Claire, but our Furby was still alive, though terribly wounded. We wrapped her up in a towel and got in the car to get her to the nearest vet clinic. Less than 10 minutes into the drive, she passed away in my arms. Despite all the things I've been through in the past 22 years, this day stands as the worst day in my life. Our neighbors had purchased two large muscular hunting type dogs; the type that belong on a farm to run and roam free. I can honestly say I never saw the dogs myself as they were kept solely in their backyard which is about 90% swimming pool and if it wasn't for their incessant barking, I would not have known they existed. It was a constant project for my dad to repair our fence where the dogs had eaten holes. But the negligence of our neighbors ended up costing us two family members in the end. They ate through a part of the fence that was covered by a bush on our side and mercilessly mauled two aging little lap dogs. It was a mix of sadness and anger that I had never experienced. And though I hate to sound childish, I wish I could have carried out some type of revenge, or at least been the one to put bullets through the eyes of those mongrel dogs. I constantly prayed for my anger to subside. I don't know if it ever completely will, but some form of peace came about a month later.

The "rejection" was not getting any better at this point and my fall schedule was looking questionable. However, I was still set to move into a beautiful one bedroom apartment and hopeful that I would be able to keep up and that over time, I would be back into my college girl routine. There was still a hole in my heart though from losing my little dogs. I began to plead with my parents that for another one. Of course, I could never replace my first two, with such distinctive personalities. But maybe I could find something to love and give a good home to. Over weeks over wearing my parents down, we began to look at puppies. It wasn't as easy as I thought it would be. The first few visits were somewhat discouraging. My first two dogs had set the bar pretty high. Then one morning, as we all sat at breakfast, I showed them a picture of a puppy located in Camp Wood, TX which is some 2 1/2 hours from San Antonio. We debated back and forth about the drive and if it was worth it. But something in us decided to go check out these dogs. Before us was a little white female and a blonde colored male. The second I saw him, I knew he was mine. We took him home and the spoiling began. Though I have to say, as much as we do for little Abel, he has done so much more to heal our broken hearts.

As the months have gone by, my lungs have only continued to decline. I've had bronchitis, CMV, pneumonia, and pulmonary emboli. Going up stairs is something I have to mentally prepare for. Simply walking around too much on a flat surface can leave me winded. I've begun to suffer with anxiety, depression, and insomnia. My body aches all over from all the medications. I'm pale and bruised from needle sticks. I feel about 80 years old most of the time. It's been a sad, slow decline that not even I can believe. Literally everything feels like a challenge. Some days I sink into nothingness, feeling worthless and frustrated. Some days, I just break down and cry for hours. I think about being the Maid of Honor at my best girl friend's wedding and wonder if I'll be alive for it. I worry sometimes that I may fall asleep at night and just not wake up. But I believe that stress alone can cause serious damage to one's body. So, I take as deep a breath and realize that while my life may not be in my hands, my attitude is.

You can say it's purely coincidental, but I feel blessed that Christmas season is upon us. It has been a struggle to not feel totally self-centered the past few months. I feel nobody around me can understand my distress and no one else has it as bad off as I do. But this way of thinking only further isolates me. This is why I feel such joy when I think of embracing the spirit of giving and bringing what abilities I still have to others. I can't go on a run anymore, I can't have a dance party, but I can listen to my friends' problems, I can make a homemade gift, I can send a card. And when I do those things, my feelings of worthlessness begin to fade. It is beautifully ironic. I'm at rock bottom, sicker than I've ever been, on my knees and begging God, "please, no more!". I'm totally empty. But by pushing a little more, I find myself wanting to live my life and not just give up. By expending my (lack of) energy on something other than MYself and MY problems, I build myself up again. And if even for just a brief moment, I forget about my problems and that is my gift at the end of the day.

Brighter posts to come very soon! Love, Mary