one fine wire

Holiday Cheer... for CHEAP

2011-11-14T23:44:00.000-08:00

So I shimmied down to my local Target this morning to create a craft project to spruce up my apartment for the Holiday season. With less than 700 sq. feet in my one bedroom apartment and a dog who likes to get into anything that I leave near the ground, I have to get creative about where I can put up my Holiday decor.

Anyways, this is my latest and greatest project that works. In my mind, the sticky candy canes that you shove on your windows are a bit... ehhh.... tacky. Whether you have one window (represent!) or one hundred, this is an affordable and classy way to dress them up!

Supplies:

1. Christmas Ornaments (I got mine at Target. The snowmen are glass. The rest are plastic. Since my apartment has a lot of blue in it, I went with different shades of blue and silver.)
2. Bulk Curling Ribbon. The white complimented mine best, but they have so many colors. Gold or silver would be really pretty too.

3. Scissors to cut off excess ribbon

Instructions:

1. Thread ribbon through the ornament eye which is meant normally for a hook.

2. Measure out how much ribbon you want and then double that amount. This will be the length of the ribbon your ornament will hang from.

3. Take the top ends and double (even triple if you want!) knot it up top to keep the ribbon from coming undone.

4. Continue hanging all ornaments at different lengths until rod is full and enjoy the prettiness!

A Filling Autumn Meal is Already in Your Pantry!

2011-11-01T00:27:00.000-07:00

ALL YOUR INGREDIENTS, LAID OUT RIGHT THERE!

So now that Halloween is over, can we please celebrate the Thanksgiving - Christmas food season? You know, the time where things get extra decadent. Now, I realize that Halloween just ended a few hours ago, se let's start slow.

It was about 2 am and I was craving some good soup. What I was not craving was doing a lot of work. Thankfully for me, I was able to invent a new soup using only ingredients that I had in my pantry. Think of it as a more bold chicken noodle soup with a richer, creamier broth than those you get over the counter. Yet, I bet everything you need to make this soup (or at least most of it) is in your kitchen right now!

The ingredient list goes as follows:

Lipton Soup Secrets Noodle Soup

Egg Noodles

1 can Cream of Mushroom Soup

1/2 Beef Bullion Cube

Soy Sauce and Worcestershire Sauce, added sparingly for taste*

1-2 stalks celery**

*your soy sauce will contribute as your salt factor so do not add any extra!

**you could also add fresh parsley, leeks, bok choy, or even cilantro for a little green and crunch

1/2 can Bite Sized French Fried Onions (for that autumn feeling!)

Instructions:

Cook the noodle soup according to package directions along with the egg noodles. Turn saucepan to low. Stir in Cream of Mushroom Soup and Bullion cube at this point. Begin to sparingly add sauces until you reach a flavor that meets your satisfaction. Chop up celery or other greens (carrots would also be nice!) and allow them to marry with the flavors of the soup. Keep soup warm on stove.

Once ready to serve, place noodles on place or in bowl and top with french fried onions.

Tastes great all alone but the rich sauce would also add amazing flavor to your typical grilled chicken or pork and the noodles become a delicious side dish!

Eat, Drink, love Miss Mary

I forgot to take a picture until I was halfway done devouring it. But you get the idea. Ooops!

Your Best Morning

2011-09-13T08:33:00.000-07:00

Instead of buying a box of your favorite sugary cereal this week, why not make your own in a matter of minutes? You can control the ingredients and cut out so much sugar, ensuring that not only is it composed of YOUR favorite stuff, it's actually GOOD for you too! Here's what I'm eating for breakfast this week along with my milk. It would be great with dried cherries, slivered coconut, even white chocolate chips (yum!). The combinations are totally yours!

Best Morning Granola

2 Cups Rolled Oats (NOT quick cooking oats)

1 1/2 tsp Cinnamon

1 teaspoon Sea Salt, plus more for sprinkling

1/4 Cup Honey

3 Tablespoons Vegetable Oil

1/4 Cup brown sugar

1 tsp Vanilla extract

1/3 Cup Almonds

1/3 Cup Hazelnuts

1/3 Cup Golden Raisins

1/3 Cup Dried Cranberries

Preheat Oven to 325 Degrees. Spray a baking sheet with nonstick spray.

In a large bowl, toss oats with cinnamon and salt.

In a separate bowl, whisk together oil, honey, brown sugar, and vanilla.

Pour honey/brown sugar mixture over oats and stir mixture until oats are fully coated. Pour mixture out onto baking sheet and spread out evenly.

Bake for 10 minutes, then remove from oven and toss granola before adding almonds and returning to oven for additional 5 minutes. At this point, add hazelnuts and toss granola one more time.

Bake 10 additional minutes then remove your granola from oven. Sprinkle immediately with sea salt to taste. Let cool slightly before adding raisins and cranberries. Stores in an airtight container up to one week.

Ten Years Later

2011-09-11T16:47:00.000-07:00

"I think of 9/11 all the time. I want to always remember the awful feeling of that day. To forget would dishonor those who died." - Former CIA Official

May we never become complacent or forget the past. May we always respect those who lost their lives that day and those who are fighting to keep us free and safe. Lastly, may we never stop hunting those who threaten the innocent lives of Americans. I pray that history never repeats itself and for all those who lost someone on this horrendous day in history. We will not forget.

Living the Sweet Life

2011-09-09T17:28:00.000-07:00

Returning to "normal life" has meant a timely return to football season. With football, of course comes tailgates. The keys to successful tailgating food is of course is that it's easy to transport to your tailgate and that you can eat with your hands. Here's a new take on brownies that I've come up with for tomorrow's Texas vs. BYU football game. If you're looking to switch things up in the sweet realm, I promise you won't be disappointed!

Chewy Crunchy Brownies:

Brownie Batter:

1/3 c. Evaporated Milk

1 1/2 stick Butter, Melted

1 box Chocolate Cake Mix

Filling:

1/3 c. Evaporated Milk

14 oz. Caramel, Melted

4 oz. Mini-Twist Pretzels (approx.)

6 oz. Semi-Sweet Chocolate Chips

Preheat oven to 350 degrees. Combine first 3 ingredients. Batter will be extremely thick. Put 1/2 of batter into 13 x 9 pan well greased and floured. Pat down batter and bake for 6 minutes. Meanwhile, melt caramels and milk in a double boiler or microwave. After the first layer is done, spread the caramel mixture on top. Break up pretzels into small pieces and drop into melted caramel. Dot with chocolate chips. Cover with remaining batter and bake for 10 minutes before topping with additional pretzel twists for decoration. Bake for an additional 10 - 15 minutes. Cool and enjoy!

Healing in Every Form and Fashion

2011-09-01T01:11:00.000-07:00

It's been overwhelming in every sense to finally have the physical freedom once again. It's 3:13 AM and I am in bed, wide awake like many nights recently. My romantic answer for you is that my body just doesn't want to shut it's eyes now that I'm free to do whatever I please and am not chained to an oxygen compressor. I can't sleep cause I'm so excited and I just want to soak up every solitary second of being ALIVE.

Well, as much as I long for that to be the cause of my insomnia, it isn't. I've been experiencing nightmares and keeping odd hours just in the past week. I can only think that when I first got home from the hospital, my body was still so physically exhausted every night, that no dream, no matter how strange was going to interrupt my sleep. However, now I am stronger and probably sleeping more like you or any other healthy person would... except for the fact that I'm not sleeping.

My "nightmares" aren't nearly as terrible as what I experienced in real life over the past year. To me, the surgery and the physical recovery has been a necessary means to the end of a year long, real life nightmare. If you were there or in contact with me on the day of my surgery, you know that I was cool, calm, and happy. There was no stress or worry running through my body anymore. The true test of strength and the time I found out who was really there for me in my life had already come and past. The trial was the long battle of staying afloat during while the rejection took over. And the surgery was not a celebration in my mind, but rather the closing of a chapter; a collective sigh of relief for those close to me and for myself. Some people stepped up to the plate, reached out, and pleasantly surprised me by really being there during a year that I can only describe as purgatory, at times hell, on Earth. Others bowed out or never even showed up. But that is neither here nor there.

The nightmares is experience on nights like tonight take me back to those days when I was still struggling to fit in to the world of a healthy person and hide my illness from everyone around me. Despite the fact that my parents still pay for my cost of living, I do think of myself as somewhat independent. I live(d) alone in a condo that I fixed up with my mom to have reflect my life, passions, and personal style (think Texas Hill Country meets New England). It doesn't take long to realize that cooking, concerts, toile, ticking, and my friends are all things I love. In college it's common to have 3, 4, even 6 roommates. But this 655 sq. ft. space was all my responsibility and I cherish my tiny apartment so much. I give every inch of it as much TLC as I can. Before I got so tremendously sick, I also had Abel up with me in Austin and I took care of him on my own. Despite a few mishaps like him chewing up a retainer and his own doggie bed, he is a successfully potty trained dog who doesn't bark or beg for food. I'd like to think that my time with him alone during his formative months has something to do with that.

I am always punctual, to a point where it stresses me out. Being late to even a lunch date with a friend embarrasses me. Being late for a class? Even worse! I learned how to creatively cook for one and I even preferred going out shopping solo. So, despite the tiny little fact that all my money was flowing from Jodey Burkholder, I felt very proud to be my own functioning little entity thriving up in Austin.

These dreams I have at night take me back to when I lost all of that. I'll be facing a steep (we're talking San Francisco steep) hill or I'll be told by a friend that it's a two mile walk to our car and I'll crouch on the ground and just be overwhelmed with the fact that I CANNOT get to where I need to go. I am literally stuck. Like I said, these dreams are not as bad as some of the realities (and hallucinations) I faced in ICU and telemetry over the past few months. They are stressful enough however to wake me up and keep me from that carefree rest that I thought I would experience so easily after transplant.

The physical part of me is healed, but my mind is taking time to catch up. I am SO BLESSED to have patient, attentive, and understanding parents who are doing everything they can to help me get back to that place where I am healthy in mind, body, and spirit. For a while now, I have had the goal to attend the first Longhorn football game of the season. It will be hot. It will be crowded. But it's something that means the world to me. Less than a month out of one of the most major surgeries a person can have, my parents could have easily told me the game wasn't an option. Instead they are driving up, attending the game themselves and staying in a hotel. If the temperature outside, exhaustion, or simply the anxiety of sleeping alone for the first time in 3 months gets to me, they will only be moments away. I feel my parents need to be lauded for how far above and beyond they have gone in this experience. There was no manual on how to handle our situation, but they have done so in such an impressive way. If you ever get a chance, please praise them for being so exceptional because the two of them have been completely self-sufficient in keeping a positive family environment throughout a time that could have been very tumultuous. Along with a few other people who I can count on one hand, they have kept me smiling down here in San Antonio and lessened the sting of not being in Austin, working toward my degree. And I owe those people to the ends of the Earth.

So yes, this weekend I will be at the Texas season opener against Rice, three weeks after a bi-lateral lung transplant. And I'm so grateful for the opportunity to even be breathing the outside air at DKR Memorial Stadium with my fellow Longhorns. I've been planning snacks to make for a friend's family tailgate for the past week and I can't wait to sit and catch up with everyone and bask in the Texas heat, while staying plenty hydrated. Though I am an adult, and in most cases, I feel that things like the decision whether or not to drink are personal and shouldn't be scrutinized, I've felt a conviction to make my personal stance on alcohol public since so many people have been concerned for my health and want to see me succeed in the future.

Anyone who has seen my Facebook page or knows me fairly well knows that I have done my fair share of partying, like most college students. And the idea of sitting outside watching football at a tailgate with a cold Shiner Blonde in my hand sounds like a perfect day which I'm sure one day I will do further down the road. However, I am very aware that a lot of people watched waste away and come close to death. As much trauma as I have internally experienced, I know my disease has put an enormous amount of stress and heartache on the people who love me as well. Out of respect for all of those who prayed for my health to be restored, I do not want to it to even APPEAR for one moment that I am not taking this new, unimpaird body of mine for granted. This extends past alcohol, of course. I want to reach a healthy weight, a healthy body imagine despite being cut up like a ragdoll, and I am striving to mentally reach a place where I am at peace with all that has happened to me in the past year. This recovery period is not just for my body, but for the whole person. I want to emerge in the coming months strong, driven, and tougher than I ever have been before despite having experienced things I wish I could forget. God has given me all the tools to move on in a positive fashion. It is up to me to use the time I have responsibly and to glorify Him in every way possible and find the small flickers of light in what was a year of darkness.

Another Step to Normalcy

2011-08-25T15:54:00.000-07:00

Today is only my 9th day home from the hospital! I woke up this morning in a super amount of pain. In the morning, I seem to always need painkillers. But other than that, I'm pretty much pain free! Less than 3 weeks out of my transplant, I corrected one of the problems that has plagued me since my blood clot in October. Because of medications, stress, and illness, my hair has been falling out and causing me grief for such a long time. Today, I got extensions put in to help fill in all the hair I lost. I'm so happy with the results! Looking healthy is one of the keys to feeling healthy and I'm glad to say I'm looking (and feeling) better with every passing day! It's such a great thing to finally feel like a normal person again so quickly after surgery! The necklace is courtesy of my niece, Bella, by the way. :)

Transplant Update

2011-08-19T09:39:00.001-07:00

Gratuitous Eyelash Update

2011-07-23T02:46:00.001-07:00

To those who were curious how my Latisse experimentwent, I'm obsessed. Here is my before and afterwith only really about 5 weeks of treatment. (I stopped for about 3 weeks in the hospital. My lashes are without a doubt darker, so all you light lashed gals, this is great for you. They are so thick, I feel like they need to be brushed out before applying mascara. The picture doesn't show off the length as much as I'd like, maybe cause of my lashes curling up at a certain point. But in the "after" photo, you can see shadows on my face that my lashes cast. Seeing them in person, with no mascara (which is pretty much always, these days), is the best testimonial I could give. But to those of you on the fence, try it!

I've had zero negative side effects. My eyes/eyelids never itch. My eyes didn't turn brown, and I've been paid so many compliments. I even got a $40 rebate on my first month's prescription so at least try it for a month! Worse case scenario? You wasted about $50. I know that's a lot of money, but sometimes we need to treat ourselves, right ladies? Best case scenario? Longer, fuller, darker lashes which maybe your boy toy will never notice, but other women will envy. Talk about a mini self-confidence booster... for less than most salons charge for highlights and a trim!

Stir Crazy

2011-07-20T21:36:00.000-07:00

Independent George is dead. To those who do not get that joke, no worries.

My life is house arrest. Thank my Lord that I am no longer in the hospital, but I am here at home, waiting still for that phone call. Life has been reduced to as far as supplemental oxygen can take me.

I feel as if I took for granted what little lung capacity I had prior to June 6 and could kick myself for not being more grateful. But then again, who isn't guilty of forgetting to count all their blessings? Right now, I am alive. And every day, I am one day closer to a transplant, whenever that day may come.

I get a guitar lesson tomorrow from my brother Kyle, which is exciting since I'm too inept to even master the D chord at this point. The kitchen has and will continue to be an escape for me, however, I still am asking for prayer. Prayer for strength to return to my body, mind, and spirit. I need prayer to get stronger, gain weight, heal the infection in my lungs, and possibly get off this trach. I'm not sure how many people actually read this, but if you do, and if you pray, please take a second to do so. I will be indebted more than I can say. I need support more than anything until that phone call arrives.

for 23 years, God has taken care of me, and I don't think He has abandoned me now. However, I want to remain a good example of a servant of His, rather than becoming reliant on myself. I know alone, I will succumb to depression and hopelessness. But with your prayers, I know I can stay upbeat and the time will quickly pass to the day I receive my transplant. Love you all.

“All human wisdom is summed up in two words - wait and hope”

Best Hospital in San Antonio

2011-07-19T08:30:00.000-07:00

When you're stuck in the hospital, it helps to know you're in one of the best in the USA

http://www.universityhealthsystem.com/our-news/press-releases/1105-university-health-system-is-top-50-hospital-in-two-specialties-and-overall-best-hospital-in-san-antonio-metro-area

RT Wisdom

2011-07-16T13:37:00.000-07:00

"Faith is the ability not to panic." - Respiratory Tech in ICU, with perfect timing

living in slow motion

2011-07-11T20:59:00.000-07:00

I've been living life at the top of the transplant list for a week now. As glamorous as being #1 might sound, it's been quite the opposite. I have not yet been granted that perfect pair of lungs. I haven't received a late night phone call ordering me to rush to the hospital. None of that. I have been, instead, glued to my phone like a schoolgirl waiting to get asked to a dance, except I'm about 100 times more desperate (I guess it really depends on the schoolgirl). Anywho, I've gotten my fair share of teases. All hospital phone numbers start with "358" so whenever I saw those pop up, I'd get butterflies in my stomach. But for some reason, the transplant clinic which is lucky to answer the phone at all deciding to call me several times to give me a friendly reminder that I had an appointment on Tuesday. I was also told I was thisclose to getting a transplant a week ago but the lungs were just a little too big. It was SUCH A TEASE. A reminder from the clinic and the lab?! A call from the transplant team that they were having size issues? Excuse me for dating myself with this reference but am I on "Punk'd" or something?! When does Ashton come out with a Yeti cooler full cadaver lungs? Never? Okay. Calm down, Mary. It's only been a week. It's ONLY been a week and I'm already losing it.

I am already making plans for after the big operation. I know I will NEED my eyebrows waxed so that's first on the list. I've already totally let myself go for the time being. I see a nail polish I want and think "isn't that nice. Maybe in a few weeks". You see, I have a device in known as a tracheostomy tube. Any attempts to look either classy or fabulous are thrown off by the gaping hole in my throat. It's necessary though. I need the 100% oxygen like I need water, Mister Abel, and Jesus himself. It's been God's little way of making me throw vanity out the window. I can promise you I'll be freshly showered with a smile on my face. But those 3 layers of mascara that I used to don may be absent as long as the trach is present. Cause let's face it, I'm not meeting my soul mate in the next few weeks with this thing in. I'm okay with that.

Even if Mr. Sexy Man did ask me out, he'd immediately be turned off by my new hobby: coughing up weird stuff. I've become that kid, you know the one; The kid who looks at what's inside their Kleenex just a little too longer than is considered normal. I'm really fascinated by what can come out of a dead/dying left lung. Mainly it's what looks like the top of a gnarly scab, accompanied by some blood. Sometimes, it's your run of the mill bright green infection mucus with streaks of black running through it. To those who just vomited, I'm really sorry. I have a fascination with the human body, including it's ability to get rid of what doesn't belong inside of it. Reason number 537 that I think I'd make an alright nurse. I probably couldn't look a patient's mucus that long though before thoroughly freaking them out. Oh great, we have Mary again today. She's the one who looks at my mucus.

the mucus queen is yours

As for the time, it drags. And it's maybe because I haven't found a good hobby yet. My mother is a very "mommy" mom and she's good at everything I want to be good at. Her suggestions to bide my time waiting made me laugh though. "Well, you could sew, knit, or crochet!", none of which sounded very exciting to do. Instead of chosen to TRY learning the guitar. My brother Jacob was kind enough to let me borrow his and I'm hoping that I can teach myself just enough Taylor Swift that I can pull off some country-pop teenage angst by the time that phone rings. So far though, the highlights of being home have been a visit from 8 dear friends of mine for a cookout along with some competitive cranium, a scrapbook made for me by the lovely Jen Mejias, and a narrative by Javi and Rebecca, which I'm not sure anyone else will ever be allowed to read. I guess you could say in my down time at home, I've felt a lot of boredom, but I've also felt a lot of love, which isn't something to take for granted. Walking around the rehab facility I was at, I saw so many rooms that, besides the patient, were empty. That was never the case with me. Whether I get that phone call in 3 minutes or 3 months, I will have an army of family, friends, and sorority sisters supporting me in my recovery.

I can't wait to get better and be on everyone else's level once again. And of course I hope it's sooner rather than later. But more than anything, I hope these lungs are a good match for my body and I don't have to think of myself as "disabled" again for a long, long time. Instead, I'd like the tables to turn and have the opportunity to make someone else's day better. One excellent nurse at University Hospital named Monica really inspired me. She was honest about what meds she thought would be helpful to me, she'd come in just to chat when she had the chance, she even took the time to give me a much needed shower, and did I mention she was a UT grad? The love she bestowed upon me was more than any other nurse I dealt with during my month stay. I even cried on my last day in ICU when her shift was over. And I've found myself thinking "I don't want to be Kate Middleton, I don't want to be Lady Gaga *cringes*, I don't want to be Taylor Swift. I want to be a nurse like Monica to where I can make a patient really feel better. That's the impact I want to make. Now if I could only get that phone call, and GET ON with my life!

Silence

2011-07-06T12:34:00.000-07:00

As you might have read from my sister, I've had my issues over the past month (pneumonia and MRSA). It could be any day now that I get my new set of lungs. For about a month, I was unable to talk. I'm sure you could imagine how frustrating that is, especially when you're trying to discuss problems with doctors and nurses. I finally got my voice back, with the use of a trachea with speaking valve. I was able to get a hidden camera prefer how I lost my voice in the first place. It sort of went down like this:

Thanks to modern medicine, I finally have my voice back! My phone is always with me, in case I get "THE CALL" that I have lungs ready for me! Pray, pray, pray that it happens soon, soon, soon!

Hello all.

2011-07-01T13:00:00.000-07:00

This is Amy, Mary’s sister. Mary is continuing to make incredible progress just as we all expected. In the past four days, she has passed multiple trials on the ventilator and is gradually requiring less and less assistance from it. The goal would be for her to be completely off of it sometime soon. She is being discharged from the hospital today and moving to Life Care Rehab Facility to continue her recovery process. There she will build up her strength and endurance before eventually going home.

Mary’s pulmonary team has presented her with the opportunity for another lung transplant. This is something that we have known was possibly coming at some point in this journey. She has done remarkably well with the lungs she has had and beaten all of the odds up until this point. But, here we are now and she is ready to take on the next challenge. She has been placed on the top of the transplant list for matching lungs. What does this mean? It means that her new lungs and the opportunity to get back to enjoying life and doing all of the things she loves again are right around the corner. We have been advised that being on the top of the list generally requires approximately a 3 month wait; however, we are prepared for whatever timing God has in mind, as only He really knows.
Retransplantation is an option offered to people like Mary who have taken exceptional care of themselves and proven to be strong and otherwise healthy candidates. Here are a few facts about lung transplantation:

Recovery After Lung Transplantation
Immediately after surgery, lung transplant patients recover for two to four days in the Cardiothoracic Intensive Care Unit. During this time patients are likely to:
• require the assistance of a ventilator for a day
• receive pain medications, immunosuppressant medications, antibiotics, and other medications per the Lung Transplant Program's protocol

Patients are transferred to the transplant unit when they are ready, where daily physical and pulmonary therapy will begin. Recent advancements in anesthesia, surgical techniques, and post-operative care have dramatically shortened the time patients spend in the hospital to approximately 14 days.

After Leaving the Hospital
Once they return home, patients are encouraged to return to normal activities to the extent that their energy levels permit and resume outpatient pulmonary rehabilitation as soon as possible. They return to the Center weekly for diagnostic testing and medical care, and will need to adjust to the lifestyle changes associated with organ transplantation. After three months, checkups at the Center will be scheduled monthly as long as the patient's condition allows less frequent visits.

Organ transplant recipients must take immunosuppressant and antimicrobial medications for the rest of their lives. The side effects associated with these medications can be wide ranging, but they can be managed.

As you know, most of this is not new to Mary, but I figured it was good information. Thank you for your continued prayers and support during this journey. We will continue to keep you posted. As a matter of fact, I look forward to her next post because she has a lot more interesting and humorous things to say than I do. :)

the expected, unexpectedly

2011-06-26T18:48:00.000-07:00

There's a Reckless Kelly in town, so you know I'm going to be there, even if it means moving a week of treatments around. Secondly it was a date! I love Tacos and Tequila that place popped up first (I got to pick :)). This dream date was supposed to culminate at Abel's, laughing at all those sad folks in Nowitzki garb.

However, as I entered Lucy's Retired Surfer's Bar, which was crowded but not overflowing,I began feeling suffocated to the point where I LEFT A RECKLESS KELLY show. I was into something way more serious that I could have imagined. Eric, my saviour for the night, getting me into a room at the ER. While I waited for my parents to arrive, he calmed me down and even made me laugh. So props to Eric for being more than just a great date but also a life saver. If you never call again cause of my drama, i'll understand why haha.

Pneumonia knocked me down HARD once again my friends. This is my 21st day in the hospital with no food, drink, or speech. Boy did I not expect this. I've made it though nightmares, hallucinations, and missing my dog so dearly over these past days. The more I've been here, the less emotional I've been about missing the life I was living. God has taken away my pride and now I simply have tunnel vision to get better. If this is how it's gonna go, if this is what I'm meant to fight, let me fight it 100%. I see no reason why in 6 months, I can't have a whole new life.

It was kind of an eerie, freeing, feeling. We all knew the day would probably come when I couldn't survive on these lungs. The day is coming and none of us are terrified. I feel confident in my dreams to have good health again. I want a simple life, full of all of you and full of moments not spent thinking about my lungs.

Quote of the Day

2011-06-02T10:59:00.000-07:00

Birds sing after a storm; Why shouldn't people feel as free to delight in whatever remains to them? - Rose Kennedy

Thank You!

2011-05-31T20:26:00.000-07:00

It feels like awhile since I wrote something on here, and I think it's about time I told you all the good news that is filling up my heart these days.

This week is my first in four weeks that I have not had treatment. Boy, am I happy to be sitting here in my apartment (watching the Dallas Mavericks lose!) and not needing to be nursing a gatorade and popping pain pills. Last week, I felt so weak and spaced out that I was scared to be away from my mom on Tuesday, which is sort of embarrassing to admit when you're 23 years old. For those of you who have ever had a few too many drinks, you could relate to how I felt last week. My eyes couldn't focus, I couldn't hold my head up, I was feeling flushed and having trouble expressing myself.

After my pulmonary embolism and being in the hospital for over two weeks, I remember the feeling of being scared to fall asleep. It may sound dramatic, but when you've been very sick, it's hard to sleep soundly, at least for me it is. This was the first time in months that I experienced that same fear. It was panic-inducing and I knew something was wrong in my body.

Finally, I took myself to the hospital on Thursday and it's a good thing I did. I have a stubborn bacterial infection in my stomach that is almost always acquired in hospitals. As someone who has felt every sort of pain, I still think nausea may be the worst. Luckily(?) for me, I never actually felt sick. I just felt a stabbing pain my stomach and spent most of the day doubled over moaning about it.

I'm on a strong antibiotic now, which I will have to take for 2 weeks, every 6 hours, including in the middle of the night. It's inconvenient, but I am so thankful to the transplant clinic at University Hospital in San Antonio for seeing me immediately, ordering the correct tests, and prescribing the correct medication in a matter of hours. The staff was nothing short of impressive and even drew all the blood from my port with very minimal discomfort to me.

In even better news, the Jerk Store Jerky campaign for AOTA has taken flight more than I could have ever imagined. I always knew I had amazing people surrounding me, but this is just mind blowing. I have never felt so lifted up.

As of today, I have collected $754. This is in 10 days, with not a cent from my parents. It's family friends, cousins, sorority sisters, and even complete strangers who are being beyond generous. Your hearts are so big and I cannot wait to send this money to The American Organ Transplant Association in a few weeks. You are helping people who are experiencing such an overwhelming time in their lives and making things a little easier for them. Also, you're inspiring me, bringing me to tears, and helping me realize that I still have a purpose in this world even though I am not able bodied enough to be in school or working.

6 months ago, I was a very depressed person because I was unable to live a "normal" life. I hated my life and had an immense amount of anger towards God. Since then, I have come to a simple realization: I need to be okay with the fact that I'm not okay. I have recognized that my scenario is in no way fair, however, I can't change it. I've accepted that my life is painful and that I don't deserve what is happening to me. But this is where the two roads diverge. You can take the first road and be miserable, and die mentally and emotionally, even before your physical body wears out. Or, you can take another and you can choose to make a difference in the time you have. If you think that you may have less time on this earth, that's all the more reason to make your mark now. And you are all helping me feel effective in this world again. I am so grateful for that.

I started down that first road for a few painstaking months. And if this disease had taken me then, my tombstone would of had to say 1988-2010, because I was dead on the inside even into 2011. Now I feel more alive than any other time I can remember, and so much of that has to do with all of you believing in me and praying for me. Emotional health is so important to physical health. When it comes down to it, you are all helping to heal my spirit, my mind, and in doing so, you are healing my body. So thank you. Thank you, thank you, thank you.

The Cost of Survival

2011-05-19T21:41:00.000-07:00

Jerry Seinfeld once said, if your body was a car, you would never buy it because of the upkeep. I think he was specifically talking about transplant patients.

If you read my previous blog post, you know that I am currently trying to raise money for the American Organ Transplant Association. This charity helps pay for the cost of travel, testing, surgery, and aftercare of transplant patients. To give you an example of how expensive it can be to live as an organ transplant recipient, I thought I would go through my past as a patient.

1. When I was 11, my pediatric pulmonologist sent me to Texas Children's Hospital in Houston for a lung Biopsy. I spent 10 days in the hospital and my family had to travel.

2. Next, my parents and I had to move to St. Louis. in 2000, St. Louis Childrens Hospital/ Barnes-Jewish Hospital was the best place in the country to have a lung transplant. Our things had to be stored and we lived in a house with my older brother and his wonderful wife who so graciously took us in.

3. In October 2000, I had a living donor lung transplant. This included an operation on myself, my dad, and on my brother. 3 surgeries, 3 surgeons, triple the cost. Average cost is $550,000. I was in the hospital for 20 days.

4. The hospital required us to stay in St. Louis an additional 3 months after for follow up care which included weekly clinic visits, physical therapy, and testing. Afterwards, we had to fly up for follow up appointments every 3 months, then every 6 months, then yearly until I was an adult. Think of all the travel cost over the years from 12 to 18.

5. Transplant patients take 2 types of anti-rejection medication. First either cyclosporine, prograf, or rapamune (I take prograf) and secondly either cellcept or myfortic (I take myfortic). Without insurance, a 90 day supply of only one of these anti-rejection medications is over $2,000. I've been on them for over 10 years. That's $120,000 for one medication. I take 11 different medications daily. I cant imagine how I could ever have survived without great health insurance, which so many people don't have.

6. I am immunosuppressed. I have been hospitalized for CMV, pneumonia, broken limbs, low potassium, dehydration, cryptosporidium, shingles, bronchitis, pulmonary emboli, migraines, and renal failure just to name a few.

7. I went into end stage renal failure twice. The second time, it did not reverse. I had a kidney transplant in September of 2009. Kidney transplants are thought to cost between $150,000 and $300,000. I spent a week in the hospital.

8. I had to get a port placed for phoropheresis. Every hospital in Texas refused to place a vortex port because such port wasn't being used here for transplant rejection. Therefore, my dad and I had to travel to Kansas for the surgery.

9. Photopheresis is a procedure where your blood is treated with photoactivable drugs and then exposed to UV light. Without insurance, it costs at least $80,000 and most insurance companies don't cover it for the treatment of rejection. I am blessed enough to have an insurance company that did cover it.

This has only been in the past 11 years. You can easily see that I've racked up millions of dollars in hospital cost over this time. I've been so blessed to have started out with good health insurance through my father's employment and now I simply have to be vigilant that I'm always covered. Also, I am so lucky to have been born to parents who have a plethora of financial wisdom. My dad has always stayed out of debt and saved his money. Now that I have been sick, he has the funds saved up to pay for things out of pocket when needed. It doesn't take very long to find people in this world who aren't in the same place of financial stability that my family is. So many people these days live on credit, pay minimum balances, and owe money on homes, cars, school loans, etc. No one expects to get sick, need an expensive transplant, and a lifetime of aftercare. That's why this fundraiser is so important to me. I am in a place of privilege by no doing of my own. I feel that I need to give back to people who haven't been as blessed as I have been, financially, but are still facing the same struggles I am, physically.

If I can make the battle easier for someone who is fighting on two fronts, that's the least I can do. So please, if you can donate, even a dollar, please do! The life of a transplant patient is exhausting enough without medical debt piling up around you!

Jerky to Save Lives!

2011-05-18T21:13:00.000-07:00

An excerpt from my Facebook, which also applies to all my blog followers!

So here's the deal, for those of you who don't know, I had a bi-lateral lung transplant in October of 2000. I've been suffering from chronic lung rejection since July of 2010. Since that time, I've been medically withdrawn from school and am currently undergoing photopheresis treatments to stop (and possibly somewhat reverse) the lung rejection.

I have been blessed to be able to travel across the country and get the most advanced treatments and expert advice throughout my life. However, there are many people who are not as fortunate as I have been.

The American Organ Transplant Association is a wonderful charity out of Houston, TX that helps arrange free transportation for patients to get to the best hospitals for transplant evaluations, surgery, and aftercare. They also help patients save money on prescription medications which can be thousands of dollars a month without insurance, along with promoting organ, marrow, and tissue donation to the public.

To help raise money during this time when I am unable to be in school, I am making homemade beef jerky to sell to you all! 100% of any profits or donations will be given to AOTA. For $5, you can order a bag of beef jerky for your summer road trip, fishing excursion, or late night snack craving! Orders can be shipped for an extra $2!

You can pay me via cash, check, or even via text through Venmo (it's super easy)!
Contact me through phone, facebook, or just stop by if you're hungry for jerky or wanting to make a donation! I'm back and forth between San Antonio and Austin and want everyone who's interested in helping to be able to!

Everyone in my family can attest that this jerky is amazing (it's a secret family recipe!) and I can promise you'll be making the lives of transplant patients better! Thanks for reading all this!

Remember: BEFF JERKY:$5. Satisfy your taste-buds and help save a life!!!
Check out AOTA online for more information on them! http://aotaonline.org/default.aspx

Mary Katherine Burkholder
210 383 5546

910 W. 25th St. Apt. #310
Austin, TX 78705

Continuing Education

2011-05-18T15:32:00.000-07:00

I love sharing good news with you all, and here is my good news for today: I will be back in school this fall. I have sent in my application for re-admission (I am currently medically withdrawn) to the University of Texas at Austin.

For those of you who don't know, I am less than 2 full semesters shy of a bachelor's degree in Health Promotion and Fitness with a minor in Theatre and Dance (I used to be really into theatre and even started out majoring in it. I figured out that it WAS NOT for me after a semester so I used it as my minor).

My long term goal is to go to nursing school. I believe that my purpose in life is to work as an advocate for other people who are chronically ill and help make their journey easier. I can't wait to continue on this path of healing and make a bigger impact in the weeks, months, and years to come!

Treatments and Living Life

2011-05-16T22:20:00.000-07:00

I'm into week 3 of my photopheresis treatments. I'm finally settling into the routine and what to expect. Every Monday and Tuesday, I arrive at Main Methodist Hospital in San Antonio and head to the 10th floor Apheresis room.

My blanket, my laptop, and my amazing mother are always with me. It's quite the prep-work to get me ready to start the treatment. I put on a cream form of Lidocaine (a skin numbing medication) an hour before treatments, which does little. It does however, numb the most superficial part of the skin, so I figure it's worth the effort. The nurses have to create a sterile field, which is an area that is free of contamination from microorganisms. Nurses must wear sterile gloves, and it's a two person

job. They must clean the port site, allow it air dry, and then prepare to insert the needle. The needle is not inserted in the same place twice for as long as possible, so the nurses stick in a different place, moving in a clockwise motion every day.

The needle insertion is very painful, but I think I'm getting used to it. The most difficult problem that we have had is securing the needle. It is large, between one and two inches long, and has no sort of apparatus to hold it in place. Because of this, I'm always covered in tape and gauze. Still, today, the needle popped out, and had to be pushed back in which was not pleasant and got my clothes sprayed in blood. I have to say though, I felt pretty cool and tough walking out of the hospital bloodied.

The actual photopheresis treatment is a 5 step process in which all your blood is filtered out and subjected to the UV radiation. I can only guess that it's because the human body holds about 5 liters of blood and doctors don't want you losing too much of it at one time. The final process of putting the blood back in your body can take anywhere from 15 to 90 minutes, just depending on the day. The entire process takes between 3 and 5 hours and is exhausting. I have watched them start cleaning the machine after my treatments and I noticed that not all my blood is put back in my body. A guess would be that I lose between 1/2 and 1 cup in every treatment, just from all the leftover blood I see. Because of this, I can feel weak, even faint after.

My entire body hurts after the treatments. It's difficult to explain other than saying I feel uncomfortable all over. My body can be sore and achy to the point where I need pain medication. This lasts through Wednesday, and I am pleased to say that by Thursday, I do not need any narcotics and am basically pain and exhaustion free.

Being the first person in Texas to use a Vortex port for photopheresis, I am a literal pin cushion for nurses to learn about this new technology. It's both a blessing and a curse. Sometimes, the nurses screw up and have to insert the needle 2 or 3 times before they are able to access the port successfully. This causes a lot of pain and anxiety, but there is a huge upside to what I am doing. I see other patients who have the traditional type that sticks out of one's neck. I can't imagine having two lines protruding out of me all the time. This Vortex port is so low maintenance and much more ascetically pleasing, especially for a young woman. In fact, I even got to lay out at Barton Springs on Saturday with one of the sorority sisters and I didn't feel self conscious at all!

On an even bigger note, by demanding this more subtle looking port, I can only pray that I am teaching an entire hospital system how to use a more modern medical device. I hope that because of the results with my Vortex port, patients in the future will have the option to come into the Methodist system with nurses already familiar and willing to use this tiny access port as opposed to the traditional line. If there's another Mary Burkholder type girl out there, who one day may need photopheresis in San Antonio, I hope she too will be able to wear a bikini in the summer and still feel pretty.

The past few weeks, I have felt almost high, despite the fact that my health hasn't improved one iota. I have been filled with so much joy. I love life again and no longer feel cursed by illness. Every time that I start to feel down about life, the fact that I'm not graduating with my friends, and not working, I remember that God has a different, still wonderful plan for me. He is telling me that school will be later. I'm applying to restart in the Fall, by the way! For now though, I need to do something else. Recently, I've made food for my friends that were taking finals. But now, I want to do something bigger. I have a general idea of what I want to do and how I want to doit, and I'm so excited to test this idea out. If my trial run this week is promising, you will all be hearing about it soon! Thank you for your continued prayers and support! They are lifting me up more than I could have ever dreamed of!

Keeping Up Appearances

2011-05-11T20:34:00.000-07:00

A person might see me driving around town some time, pull up in a handicap spot (yes, I have a permit), and roll their eyes over witnessing a privileged little princess getting the primo parking spot. They may scoff, "There's nothing wrong with her! Save that for a real handicap person!"

Little do they know, had I not been able to park so close to my destination, I would be struggling to breathe.

To an outsider, I look like a slim, well groomed young woman. I'm well dressed. I wear enough make up to look healthy. I try my hardest not to look sickly. After all, the Gospel of Matthew says, "And when you fast, do not look dismal, like the hypocrites, for they disfigure their faces that their fasting may be seen by men. Truly, I say to you, they have received their reward. But when you fast, anoint your head and wash your face, that your fasting may not be seen by men but by your Father who is in secret; and your Father who sees in secret will reward you"

OK, let's get real here, I really do hate when people play up their illnesses to their advantage, or act more dramatic than is necessary. Like REALLY hate it. But also, I'm a young woman in my early 20s! I want to look healthy! I want to fool the world and everyone who doesn't need to know that I am the healthiest thing they've ever seen! But I have secret: my hair is falling out and has been for months. There's several reasons that this is happening:

1. I'm on blood-thinners which cause hair loss. I'm stopping those tomorrow though. It's been over 6 months and after a scan next week, I won't have to think about blood clots anymore.

2. I'm sick, duh. My body is poorly oxygenated at times.

3. I've been stressed in the past. I can openly admit that I let the stress of a serious illness, among other things, get to me. I can honestly say that now I have such a better grip on things though. So hopefully that factor goes away.

4. I've lost a lot of weight. I went from being 114-115 at my heaviest to 81 at my lowest. Definitely not healthy. I'm steady now in the low 90's and trying to eat right to keep it that way.

I'm sure everyone around me has noticed my extensions that I clip in to try to achieve the "Texas" hair that I so desire. I also need to add that Heather at Topaz Salon in Austin did a great job of that for my formal last week, if anyone in Austin is looking for a hairdresser! This past week, I finally broke down and saw a dermatologist about my hair loss. Unfortunately, for the reasons I named above, there was not much help she could offer me other than trying to stay healthy, relaxed, and patient about the process. With that being said, please offer any personal tips and tricks your may have to help hair grow quickly, and thickly! I'm desperate!

On a completely gratuitous note, I also just started on Latisse yesterday as well. The product promises to help you grow more of your own lashes, which are also longer and darker. If I can't have hair on my head, maybe having some on eyes will be an adequate substitute. Here's my before picture at Week 0. I'll post another at Week 4 and Week 8 and so on! But seriously, hair tips! I want to keep looking like I don't deserve that handicap spot! Love, Love, Love!

We Got Him

2011-05-09T02:08:00.000-07:00

This is about a week late, but it's given me some time to mull over the death of Osama Bin Laden. I always think it's better to wait when you have strong feelings on something and sleep on it, think it over, before you put your opinion out there. I felt such strong emotions. And after a week, I'm ready put out my thoughts (for what they're worth) on the situation, from a Christian prospective. Beginning with some of the statistics from September 11, 2001, via New York Magazine:

Total number killed in attacks (official figure as of 9/5/02): 2,819

Number of firefighters and paramedics killed: 343

Number of NYPD officers: 23

Number of Port Authority police officers: 37
Number of WTC companies that lost people: 60
Number of employees who died in Tower One: 1,402
Number of employees who died in Tower Two: 614
Number of employees lost at Cantor Fitzgerald: 658
Number of U.S. troops killed in Operation Enduring Freedom: 22
Number of nations whose citizens were killed in attacks: 115

 

Ratio of men to women who died: 3:1

Age of the greatest number who died: between 35 and 39

Bodies found "intact": 289

Body parts found: 19,858

Number of families who got no remains: 1,717

To those of you who remember that day, I'm sure you can't erase the images of people jumping from the 90th floor of the World Trade Center rather than be incinerated by the flames engulfing the towers. You probably remember the phone calls played from passengers on United flight 93 to loved ones. It was a day that was truly scarring for every American who was glued to the TV, watching these events unfold. The "mastermind" behind these attacks was a name few of us were very familiar with: Osama Bin Laden, who had previously been quoted as saying: Allah has ordered us to glorify the truth and to defend Muslim land, especially the Arab peninsula ... against the unbelievers. After World War II, the Americans grew more unfair and more oppressive towards people in general and Muslims in particular. ... The Americans started it and retaliation and punishment should be carried out following the principle of reciprocity, especially when women and children are involved.

Men, think of your wife. Mothers, think of your children. Osama Bin Laden would have killed them if he had the opportunity. I've seen so many Christians posting things on Facebook, Twitter, and speaking through radio about how they find it hard or nearly impossible to rejoice in another life lost. Many note the words of Christ saying "turn the other cheek", which is understandable when it comes to a lie or sour feelings between an acquaintance or even a family member and yourself. But to do the same with the mass murderer, life ruiner, a

person who has maimed tens of thousands of lives, is wrong and only inviting more death.

I take you back to the book of Exodus, when Moses parted and crossed the Red Sea. After all the Hebrew people had safely passed, he once again raised his staff, and the water came and engulfed the Egyptians. After this, Moses composed a song of thanksgiving to the Lord, which can be fully found at Exodus 15:1-18. Here is an excerpt:

² “The LORD is my strength and my defense;
he has become my salvation.
He is my God, and I will praise him,
my father’s God, and I will exalt him.
³ The LORD is a warrior;
the LORD is his name.
⁴ Pharaoh’s chariots and his army
he has hurled into the sea.
The best of Pharaoh’s officers
are drowned in the Red Sea.
⁵ The deep waters have covered them;
they sank to the depths like a stone.
⁶ Your right hand, LORD,
was majestic in power.
Your right hand, LORD,
shattered the enemy."

I have seen quotes from inspiring figures in the past, such as Dr. Martin Luther King Jr condemning taking human life, but I felt it was important to go to the Word. Though it is true that God does not "delight in the death of the wicked", one can only wonder if his disappointment lies more in the actual killing or in the fact that one of His creations turned away from Him and had to lose his life for because of that.

To those of you who are against capital punishment under any circumstances, obviously there is no convincing you that the killing of Bin Laden was just. To those of you who are against capital punishment, but relieved in the death of Osama Bin Laden, I ask you how you can condemn the death of a man who has killed one and savor the death of a man who killed thousands? Either way, a life was taken and a group of family and friends was emotionally destroyed by the actions of that man.

Usually, I'm very apathetic on matters like this, but for some reason, the reactions I saw of solemnity were very upsetting, especially when God was used to justify those feelings. Twisting the Word of the Bible to fit one's personal views is exactly what the Islamic extremists have done with the Qu'ran. I will be the first to admit that I do not understand the mind of God. I look to the Bible, and try to figure out what one should think about this situation. But when something is so upsetting, so mind boggling as what happened on September 11, 2011, it is hard to find a concrete answer of how one is supposed to feel about the death of Osama Bin Laden. I just wanted to share my voice along with some Biblical truth for everyone to digest. And in the words of Forrest Gump, "That's all I have to say about that".

When the righteous prosper, the city rejoices; when the wicked perish, there are shouts of joy. - Proverbs 11:10

Never Take Yourself too Seriously

2011-05-04T23:04:00.000-07:00

“Laugh at yourself and at life. Not in the spirit of derision or whining self-pity, but as a remedy, a miracle drug, that will ease your pain, cure your depression, and help you to put in perspective that seemingly terrible defeat and worry with laughter at your predicaments, thus freeing your mind to think clearly toward the solution that is certain to come. Never take yourself too seriously" - OG Mandino

A Shot to the Heart

2011-05-03T20:42:00.001-07:00

I had my first photopheresis treatment today. The flying to Kansas City, the port placement, and the recovery seemed to be the worst of it. Then there was the waiting. A group aphaeresis experts had to coordinate their schedules and come in from Chicago, Phoenix, and Round Rock to oversee my first treatment. I showed you in an earlier post what the port looks like. Well here's what the port looks like in me. I circled it, because the port is actually pretty easy to miss. It's been a blessing how inconspicuous my little Toto (thanks Kyle!) looks, and cosmetically, I couldn't be happier with the results. But now it was time to put Toto to work.

The needle used to access a vortex port is large. And it thick. And it's scary. I'm a little girl with little veins who is used to being poked by butterfly needles. So this big thing coming at me caused a lot of anxiety. The nurse tells me to take a deep breath in, so I do, and POW (see video below) right into to chest. My reaction was far less dramatic, however, that's how I felt on the inside. The amount of instant pain took my breath away. I couldn't speak, cry, inhale, or exhale. And the worst part about it was that they missed! The entire needle stab had to be done once again. After that trauma and some ativan, was able to relax. The procedure was long but went smoothly from there. I'm tired but not as exhausted as I thought I would be. I feel blessed to have made it through this first day successful.

Toto has done it's job for today. And he will have to come through tomorrow. I was given lidocaine to put on the port tomorrow so I will be numb and not have to experience the unreal pain I felt this morning. But in the end, if pain, sticks, and stabs are what it takes to get me well, bring them on all over my body. I'm 100% committed to this treatment. I have confidence in my doctor and the sweet, gifted nurses in aphaeresis, I feel comfortable asking questions, and I am at peace with my decision. This small step forward has helped me see more of the future I imagine which includes graduating, nursing school, a husband, a family, and helping other like me for as long as I'm blessed to be on this earth.

Limitations

2011-04-29T20:03:00.000-07:00

Today has been one of those days that was unexpectedly difficult. As one who wishes to rise above any malicious talk, I won't divulge names or personal details. For a little background of the day, I was basically seen as unreliable because of my physical and past emotional problems, which was something I had never heard before. If you read this regularly, I think you can all appreciate the strides I have made. I am at a stable place with my breathing. It isn't normal, but I try my hardest to live a normal life. I push myself through pain to make sure I remain the good daughter, sister, and friend I was before all of this, while still keeping my health as a top priority. I have even flown across the country to make sure I get the best of the best for every medical need. Restoring my health is my number one goal.

I am recovering from major depressive disorder and grief disorder. I've reached a level of acceptance with my condition. I am huge proponent of seeking help and not shying away from medication, as long as it's only temporary. I have gone from darkness to light, hopeless to optimistic, and melancholy to joyful. Until recently, I was unable to see all the blessings in my life. Now, every day, I find new things that make it worth living to the fullest.

With all the progress I feel I've made, it's hard to accept someone seeing you as undesirable for the things in your life which you can't change, although you'd give anything if you could. You work so hard, battle things that most people will never know about, and are still undersold. So I went to some of my biggest fans: my siblings. I immediately felt validated again, and loved tremendously. My brother, Kyle said something so sweet and so profound, I had to share it with you all:

Your "limitations" are yours. Everyone has them. Love is cool because it sees those "limitations" as more reason to love, not a reason to run.

So thank you to all of you who have been able to see past the sickness, and have acknowledged the strength that the last 7 months or so have required. Thank you for seeing my limitations and loving me, not just in spite of, but because of them. You are a big part of where I find my joy amidst the pain in my life. I will never be able to repay you. I can only continue to try and be the best daughter, sister, and friend to each and every one of you.

Love, Mary

God's Promises are Always Kept

2011-04-23T23:35:00.000-07:00

Today is Easter, the celebration of Christ rising from the dead and fulfilling His promise to pay for our Sins. After Jesus was crucified, many of his followers assumed that they would never see or hear from their Messiah again. Just as he did back then, God still keeps his promises.

A few months ago I was physically ill, mentally confused, and spiritually broken. I was in a place so dark, that I could see no light ahead. Yes, I had been sick before. For some reason though, this time, the sickness had entered into my soul. I lived from day to day, at times hour to hour, just trying to make it to the next one. I was unable to see a future for myself and unable to dream of one day living a happy life.

There were times, that I uttered the same words that Christ said on the cross: Eli Eli lama sabachthani?

In English this is translated, "My God, my God, why have you forsaken me?"

I truly felt abandoned by God. For the first time in my life, I questioned everything. While I never doubted the existence of God, I did doubt the ability of Him to intercede on my behalf. Was God just an onlooker to my life? Did he not guide our minds, hearts, and actions like I had once believed? I was tortured by these questions.

But since that time of darkness, God has finally led me back into the light. After a stream of unsuccessful and frustrating psychiatrists, I finally found one who listened to me. He had the wisdom to prescribe me the correct medications. From there, I began to see more clearly.

I wont forget the day I first noticed that depression had begun to subside. I was on the phone with my friend, Omar, having a casual conversation. Once I got off the phone, I realized that during the our talk, my tone of voice had changed. It was lighter, more joy filled than it had been in months. I was beginning to heal. And though it was not on my timeline, I knew it was on God's.

Since then, I've found myself slowly falling back in love with the things I enjoyed in my old life, before I became ill. In my times of great sadness, I had stopped cooking, and although I dearly missed it, I had no energy to prepare a meal and no desire to eat it. My weight had bottomed as low as 81 lbs and this only made my depression worse. I hated looking at an emaciated young woman in the mirror. Slowly though, God has brought back my appetite. I've gained almost 10 lbs in the past two months. And I've been cooking again, which has been like rediscovering an old friend. I feel better about my identity, both on the outside and inside.

I cannot compare my suffering to that of Christ on the cross. However, I do feel, like Jesus, that I suffered this for a reason. The only explanation I have for being so public on such private matters is because I pray that if anyone is also suffering mental or physical afflictions, he or she would find this and realize that there are brighter times ahead. It may not be tomorrow, but you will be healed eventually to an extent.

Remembering the days that I felt to hopeless and alone, I realize that I would never want to relive that. I do not consider my struggles as blessing or something that I deserved. But in hindsight, I can look back and say that I have grown from it. I can now feel empathy towards others struggling with depression and my heart has grown to be more compassionate to those around me.

Just like Christ, I felt forsaken by God. But just like God promised his Son, I was delivered from the darkness and back into His marvelous light. In that light I stand, still physically broken, but emotionally resilient. I would take this physical pain over the emotional unrest any day. Even though my body may be limited in it's abilities, my soul is free. Free to love my neighbor, free to laugh until I cry, free to face my future without fear, and most importantly, free to praise my God for all that He has done for me.

So today, as I celebrate the resurrection of my Savior, I will also be praising God for more selfish reasons. Just as He brought Christ back from the dead, He did so for me. My heart and soul are alive once again. I have been restored and I cannot be begin to articulate my gratitude. So, Thank you Father and Happy Easter to all.

Rock Chalk and Port Talk

2011-04-19T21:02:00.000-07:00

If you know me well, you know my heart belongs to Texas. If you've been in my condo, you'll see it's a shrine to the Lone Star State. I have the famous quote by Davey Crockett (if you don't know it, you don't deserve an explanation) on a magnet on my fridge. My walls are covered with Texas Country concert posters, all neatly framed. There's Autographs from famous Texas athletes, and a poster my friend stole from 6th street which pictures the flag of Gonzales along with an H-Bomb, which has been named by it's manufacturers to the the "shot of the Republic".

I promise with all that, I still have plenty of feminine things mixed in such as fur throws, wine bottle candelabras, faux leather lampshades, and crushed velvet valances which I am proud to say I drilled in myself.

My music tastes are also purely Texan. I could slap Lady Gaga for her blasphemous "Judas". I am so behind on what is on mainstream radio, it's embarrassing. I just can't seem to get my iPod off of more humble music. My current obsession is Turnpike Troubadours, thanks to my dear friend Casey Lee. And anytime I can dust off my cowboy boots, grab a koozie, and get to a concert, I'm there. The point is, I think the best of the best is all in Texas. Turns out, that's not always true. For photopheresis, I needed a port put in for IV access.

Everywhere in Texas was pushing a broviac port, which I've pictured here:

Well, *in Valley girl, sorority voice*, excuse me, but I'm 22 years old and I'm in a so-

ror-ity. I sort of have to go lay out and float the river this summer and wear like cute dresses to date parties.

Well in all seriousness, I didn't want a giant port sticking out. Who would? So I did some research and had known from friends about ports that go underneath your skin and are hardly noticeable. Unfortunately, there's an idea here in Texas apparently that if it aint broke, don't fix it. They've been using broviac ports for years on photopheresis patients and had no problems. Why try something new that requires different supplies, additional training, and more of a headache for them?

Thankfully after some persistence, they agreed to let me go ahead with this new kind of port known as a vortex port. This little guy goes under the skin would totally ease my concerns of looking like a mutant. The vortex is the pretty, little, round apparatus pictured, if you haven't figured that out already. Because Texas is only familiar with implanting broviacs, I had to find somewhere to put this device in. This quest led me to KU Medical Center in Kansas City.

As much as I'd like to say the nicest people are from Texas, Midwesterners are pretty darn sweet. They accommodated me from the second I walked in the doors. There was little waiting time once I checked in. I requested IV therapy for placement this morning, and within minutes an IV therapy had arrived and successfully started my line.

There was some unprofessional drama where a male nurse and a female nurse got into a huge fight. The female nurse stormed off crying and then all the other nurses talked badly about her. However, once she returned, still sniffling, those same nurses were there to give her a shoulder rub and comfort her. It was probably something a patient shouldn't witness, but I have to admit, I loved watching it all go down. It was like a reality TV blowout right in front of me.

The drugs were amazing of course in helping me relax. The medication given in called versed, which leaves you conscious but forgetful after the procedure. The main complaint of everyone who worked on me was that I was a bit too talkative, but what else would you expect?!

The pain afterwards has been unpleasant and I would probably pay some big money for some pain killers tonight. I guess I'll just have to wait it out until tomorrow. God willing, this is the worst of it all. I am too pleased about the outcome to go on and on about pain. the port is less noticeable than I imagined. I don't see it really affecting any of my fashion choices in the future. So thank you, Kansas. You aren't too bad after all.

Tomorrow I head back to Texas; Back to hot temperatures, Texas Country music, my wonderful friends, and hopefully photopheresis treatments. My goal is to start Easter Monday but there is still a question mark on if that will actually happen. I ask for your prayers that things move swiftly and results will show sooner rather than later.

And on a lighter note, I want to come up with a name for my port. Any ideas?

Consuming You and Defining You. What is the difference?

2011-04-04T23:59:00.000-07:00

As a good handful of you know, I've been preparing to start photopheresis treatments in a matter of weeks. Recently, it seems that my life has been taken over by phone calls to doctors, nurses, coordinators, and my sister to vent my sheer frustration. And recently it seems the more I hear from these people, the more I want to crawl under into a cave and disappear. I got some devastating news about a week ago that will affect my treatments for the next 6 months of my life. I haven't been able to touch on the subject with most people since I feel so tired of complaining about things that at this point, and in this world, only my God can change. Hosting Rebecca's party forced me to lift myself out of my depression this weekend and put on a good face. Little did I know, that fake smile would stick and become a real one.

I lounged on the comfortable bed in the Driskill Hotel, laughing until I cried, forgetting about my recent troubles. And though the party is now over, I am happy to say that I have not sunk back into the sadness that had overtaken me for the good part of last week. My depression is slowly fading and my optimism is growing stronger. I used to feel hopeless, where as now, I am always looking forward to the days ahead. I've shed an old skin of depression and isolation and returned to be the simple, friendly girl I once was. I still have an illness, but that is only one of the many compartments that composes who I am. My illness doesn't define me now, and even if it kills me, it won't define me then. I will be living a pure, kind, joy-filled life until my time comes. That may be in 6 weeks or in 60 years. Either way, illness will not take who I am away from my family, my friends, or from myself.

This disease will probably kill me someday, but I have already emotionally defeated it and have peace in my soul for the first time in months.

"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love, and to be greater than our suffering" - Ben Okri

Shovels + Rope

2011-03-28T08:28:00.000-07:00

There's nothing like Texas IFC Round Up weekend to make you realize there's a lot of trash out there. When you hear a fraternity paid $10,000 to hire a rapper named "Chip tha Ripper" for an hour and his best known single is titled "Bitch, I Feel Good", you begin to lose some faith in humanity. Is anyone still making good, honest music out there? Luckily, yes.

On March 9, when I saw Hayes Carll at Cactus Cafe, I got introduced to a new, wonderful band. Since then I've been listening nonstop to Cary Ann Hearst and Michael Trent's band Shovels and Rope. The music takes me back to another time. Any musician these days who can produce such haunting melodies with a few simple instruments and their voices is worth a listen to.

WHAT?! A post not about dying?!

2011-03-18T20:48:00.000-07:00

Who's blog is this???? Mary's blog is supposed to make me feel melancholy, even somber at times? And now she's posting a craft?! What the crap? This girl is freaking bi-polar. But I wanted to show you want I've been spending a lot of my free time doing: PLANNING A BACHELORETTE PARTY! I'm the Maid of Honor in an upcoming wedding for my lovely friends Phillip Sanders and Rebecca Reese! So I had to true blessing to plan this party. I thought I'd share with you craft I came up with for placeholders. It could be for a ladies luncheon, or even kids parties:

CHOCOLATE BAR PLACE HOLDERS!

Supplies needed: Linen Cardstock

Set of colored pencils

Markers of choice colors

Construction paper

Scissors

Stamp pads (of eye colors)

No. 2 pencil that hasn't been used

Thin black Sharpie

Ribbon

Packing Tape

Craft Glue

1. Take Linen cardstock and crap your candy bar as if it was a Christmas present. If you're finding it difficult to cleanly fold the cardstorck, use a bo ne folder to press the card stock into place. Because this is a heavier paper, I recommend using packing tape to secure it.

2. Then take your construction paper and trace then cut with scissors the hair styles of the guests on his or hers appropriate color. Use your craft glue to affix the hair to the cardstock.

3. Open your stamp pads and pick the color that matches with your guest's eye color. Use the eraser of your #2 pencil to dot in the ink until it is covered to the desire you wish. You may want to try first test this on another sheet of paper. Once you feel like you've gotten the hang of it, go ahead an dot the eyes on with your stamped pencil. Use your thin Sharpie to make eyelashes and draw a simple nose along with a chin and neck if desired.

4. Take out your colored pencils to draw on lips, and if it is a female, little dollops of blush in their perfect shades. Draw appropriately matching eyebrows. Then use a skin tone colored pencil to give color to the rest of the face. Use the colored pencil of your choice to write the guest's name below his or her face.

5. Take your ribbon and wrap it around the bar so it just fitsand then some, then cut. Craft glue it securely to the front, then securely glue the overlap in the back. You don't want this to come undone.

6. Finally, if it as ceremony such as mine, I wrote titles of the guests large in the space left. Other ideas could be "The Smith Family Christmas", "Ladies Night", or "Timmy's Birthday Party" with a large marker and ruler to keep it straight. Then, admire your work!

One More Night to Run

2011-03-14T17:19:00.000-07:00

Can you sum up what's going on in your life in less than 5 minutes? Well, with the genius of Hayes Carll, I tried. I hope that instead of sympathy, it brings more understanding. Love you all for taking the time out for listening to me. - Mary

All You NEVER Wanted to Know About Photopheresis

2011-03-10T11:21:00.000-08:00

This past Monday, after a month of waiting for an appointment, I met my oncologist, Dr. Shawnessy to discuss the treatment of photopheresis for my chronic lung rejection. The anticipation had been building for weeks. I had lines of questions and was so anxious for some answers, finally. I took Xanax and blood pressure medication to control my anxiety. Finally, I reached oncology and checked in. Everyone around me was sick. It was such a strange feeling, but a good one. I realized I wasn't alone. So many people are sick, some much worse than me. It gave me a less selfish view of my illness. It really could be worse.

A friendly nurse took me back and weighed me (87 pounds *sigh*) took my blood pressure which was luckily normal and took me through a revealing question and answer session.

Have you ever been diagnosed with any type of hepatitis? No

Is there any chance that you have HIV or AIDS? No

Have you ever had sex in exchange for money? NO

It was 3 pages of questions that any normal person would answer no to. I finally stopped and told her, "these are probably all no. Sorry, I'm really boring." But obviously we still had to continue. After this verbal probing, I went back to the waiting room for another half hour before the good nurse came in with some bad news: the doctor had been called for an emergency and would be back in an hour and a half.

All the weight on my shoulders, the anxiety of the unknown; I felt like I had been waiting on this 10:30 appointment forever. At this point, I was on such a high that waiting until 12:30 felt like waiting another week. I went to the lobby, curled up under my jacket, and tried to relax. Despite the unexpected delay, I wanted to be on target and ready to ask all my questions when the time came.

When I finally met the doctor, he was friendly, made eye contact, and did more listening than most doctors. It was so refreshing and comforting. We began the discussion on photopheresis. My first question, as girl who cares about her body image, was if I would need a central line. The answer, which I sort of already knew, was confirmed. Yes. I will need a central line. My biggest concern was that on April 16, two of my dearest friends are getting married. I have been given the privilege to be Rebecca's Maid of Honor. Any sort of line would not only distract people from her, but embarrass me. After discussing this with him, Dr. Shawnessy said there would be no long term danger to waiting until after the wedding to put in the line and start the treatment. A feeling of relief came over me for the first time that day.

For twice a week, I will be hooked up to a machine which will remove my white blood cells from my body, filter them into a machine, and radiate them with a UV light. The light will somewhat confuse my t-cells before they are put back into my body. These t-cells, which are now abnormal will stop recognizing my lungs as foreign tissue and stop trying to kill them off. Over time, some people will see their lung problems level off, a small percentage will see an improvement, and some people will continue to decline. We will begin doing treatments twice a week for a month and then begin to taper depending on how my pulmonary function tests come back over time.

It doesn't sound like the most promising of treatments, but it is much less harmful to one's body than high dose steroids. It would have no affect on my kidney. And side effects are minimal which include infection, feeling tired, or feeling faint.

I hate the idea of having a central line in swimsuit season. I hate being in hospitals and the fact that soon I will be a slave to them once again. But I love my family, my friends, and my sweet little dog. For them, I will fight as hard as I can till there is no fight left in me. My goal is not to think about these treatments for now. My goal is to be kind, to be generous, and be someone for people to look up to, not to feel sorry for. To not stress about what I cannot change and to just work hard to be the daughter, sister, friend, and student and I want to be, as long as I can.

My new favorite quote:

You can't wring your hands and roll up your sleeves at the same time. - Pat Schroeder

The Weight Needs to be Over

2011-03-02T21:08:00.000-08:00

The first picture you see on your right hand side is

me at Alpha Phi Formal in May 2010. I was around

108-110 lbs that night and had a fabulous evening.

The second picture is from New Years Eve this 2010. Still a happy face, but much a thinner one.

This has been the story of my life for as long as I can remember. A little too big then a little too small (even a lot too small). Never perfect. Never satisfied.

Looking back, I think ever since entering the most wonderful University of Texas, I have struggled with my weight. It started by drinking too much, eating queso and wings late at night after fraternity mixers, and all the sudden, I was the heaviest I had ever been.

After months of kidney failure, I began to LOSE weight. Sounds great right? I can eat burgers, cheesecake, pasta, CHEESE ENCHILADAS. Except when you are ill, none of those things sound good. I would go through the Luby's line and have a cup of strawberries and some orange jello as my meal. My body was telling my brain to avoid protein rich food to keep my kidneys healthy as long as I could.

After my transplants, some of those habits stuck with me. I still rarely eat meat, unless its a hamburger. I pick seafood over meat every day. I love most all fruits and will eat any vegetable (even brussel sprouts, which are amazing roasted in the oven). But it's a tough transition. It used to be that any I had a craving, I was instantly granted what I wanted because I desperately needed the calories. Running out for a burger at 10:30 had gone from a way to avoid a feeding tube to a way to make my jeans not zip over a 5 month period.

Now I'm on that same yo-yo deal again. I felt I had gained too much weight after my kidney transplant so I cut back on what I ate, joined a gym and went 5 days a week. Though my weight was slow to come off, my body looked better. My clothes fit different. I felt better, not great, but encouraged. Until July, that is.

Once the rejection set in, followed the CMV, pneumonia, and pulmonary emboli, my weight loss became rapid. In the late summer I was around 110-113 lbs on a given day. Today I range in the high 80's. Nothing fits. Skirts just fall off. Shirts that once fit like a glove look borrowed from another, bigger, girl. All my dresses have to be taken in.

I used to always think my arms were chubby, bat wing arms. Now they disgust me in pictures. I feel like the same girl in a foreign body with no derriere to speak of. No hips or thighs to distinguish me from that of an eleven-year-old boy. And as for breasts, well, I've got a couple ant-bites where those should be. But it's always been that way so I can't blame that on illness.

I wonder if this discomfort in our skin is something we all feel as young women, wanting to be perfect. Or maybe, because my years that were so important to the development of a young woman have been so unstable, I have never been able to acquire the positive body image that other girls have by now. I'm skinny today but will I wake up in 6 months and be chubby again? And then what will I wear? How will I look? Will anyone find me pretty?

These are important questions when you think of dating, marriage, career, public portrayal, self care, etc.

However, I need to remember as I obsess over my weight that what comes first is my health. And IF I could just be healthy forever, I would have the biggest, most gracious smile on my face all of the time. And what could be more pretty than that?

Mental Health

2011-02-26T23:45:00.000-08:00

Throughout a lung transplant and then a kidney transplant (not to mention other conditions that have popped up through the years), I have always made it through with a positive attitude and smile. This last bombshell, that my lungs were failing, seemed to send me over the brink. All of the sudden, after the murder of my dogs followed a month later my CMV, pneumonia, and a pulmonary embolism, I realized I needed help. No matter where I went or whom I was with, I was not able to be happy. I couldn't laugh. I couldn't eat and have subsequently lost twenty pounds. My hair has been falling out due to lack of nutrition. My skin isn't the same. I felt achy and tired all the time. There were days I would barely move. I felt as if I had sunk into the deepest of depressions. Was it possible I just couldn't take so many crippling blows in my short life? That eventually one was going to knock me out and make take away my will to even keep fighting?

I was suffering, people around me were suffering. And that's why I made the difficult decision after 11 years of being chronically ill to finally seek some help for my mind and my soul. I had to go through several doctors and several unsuccessful medications before I met someone who actually listened. I was prescribed something for my trouble sleeping and for major depressive disorder. After almost two weeks, I am sleeping almost a full night and I can feel the joy returning to me, even in simple ways, like the tone of voice I use on the phone. I still have a long way in the treatment process, but I feel like what improvement I have experienced thus far is somewhat of a miracle. I am slowly emerging from that dark hole I had isolated myself in. As a usually private person, I am only posting this because I feel a lot of people, especially young adults, have trouble for asking for help. No one wants to be labeled as crazy or feeling they need pills to function. But if you or someone you know has lost that spark to live, please encourage them to look into treatment. Do not see it as a long-term reliance on a drug but rather a stepping stone to get back to a happier place in your life. I am a perfect example of this. Nothing has changed in my physical health. I'm still very sick and may or may not get better. But I smile more, I laugh, I try new things. It wasn't always my lungs holding me back from living my life. It was also my mind. Now I am beginning a sense of freedom that I haven't experienced in months.

Please send this on if you know someone who you think they may be depressed. It can be SO MUCH BETTER! Otherwise, God bless and thank you for reading my rambling thoughts.

A Little Daily Thought.

2011-02-26T23:00:00.000-08:00

Some people feel guilty about their anxieties and regard them as a defect of faith but they are afflictions, not sins. Like all afflictions, they are, if we can so take them, our share in the passion of Christ. - CS Lewis

Welcoming Peace

2011-02-09T22:57:00.000-08:00

The past week has given me such respect for The University of Texas. They have made my medical withdrawal process more quick and painless than I could have ever imagined. People in my department whom I have never met have sent me their thoughts and prayers. It has been one less stressor in my life that I am waving good riddance to. When I was in school, I didn't mind the class attendance (unless of course, the weather was less than perfect). I didn't like studying. I did it though. I got good grades. And I miss getting closer to accomplishing something as amazing as a degree from this great university. But for now, I need to focus on my health. Anything else just feels like clutter.

My physical and mental health has become my top priority. I'm reading a book to help me manage being constantly short of breath. Also, I just got another in the mail about learning to be at peace with chronic disease. I have always prescribed to Dennis Prager's theory on happiness which is basically: Act happy if you don't feel it. However, that is much easier to do when you're having a bad day. Having a tragic six months and facing the idea of major surgery and possibly death is very different. It is hard to understand God, the universe, and the people around you when something so unfair is happening and you are suffering so slowly. What I am trying to do is be content in my good days and grateful for the amazing people in my life who are going through this right along with me.

Another is to use some very liberal scissors and cut out everything in my life that is causing more grief and anxiety. Obviously, the first thing was school, tests, and papers. Focusing on any type of timeline when you're unsure of your own is simply impossible. Secondly, I hate to say it, I have had to cut out people. There's people who are there for you, even when you wanna be alone. They're the ones who push you to go out and live your life even when chow mein and Sex and City reruns seem like the only appealing thing on Earth. And then there are people which are the opposite. There's people who will let you fall down into that depression you're constantly fighting. Toxic people need to go. Even if it's only for a few days, or weeks, it has to be done to keep your own sanity in tact. Being ill, you already feel like time is against you. The last thing you wanna feel is that people are also against you.

By cutting out the pain, stress, and worry in some parts of my life, I think it's only natural that I'll feel physically better. Obviously I won't be healed, but I will be more healthy to pursue this path ahead of me with less anxiety. It's exciting to think I could get some pieces of me back while in this limbo stage before treatment and transplant evaluation begins. It's like I'm reading ahead on how to get better. And I really can't wait to see what I learn.

This week, for now.

2011-02-03T23:06:00.001-08:00

I've had a lot of things come up in the past week that made some major changes to my plan for the semester. My next attempt at going to class was another miserable experience. I laid on my bedroom floor, feeling that I couldn't move. My breathing became so labored that it reminded me of the weeks following my blood clots. My stomach was churning. I felt it was physically impossible for me to even move. All I could think about was not throwing up. It became clear to me this was a problem that was not going away. It took hours for the feeling to subside. The panic attacks come on so strong and the onset is so unpredictable that it's become a worry that the next attack is around the corner, in a crowd, or around people who simply won't understand and will think I am insane. If I was a celebrity, this whole panic attack thing would be considered chic. Doesn't it just sound better? Oh, She's in her trailer having a panic attack. She will be out in a bit. See? Reason #938592085 that I need a reality show.

Tuesday was my all day appointment at University Hospital Transplant Center. First begins with check-in at admissions, and then labs. Labs used to be simple until they poked, prodded, and ruined all my veins. Now I take a trip to the Oncology wing of the hospital. A PIC specialist takes an ultrasound machine and along my arms. Once he finds a vein, we use a large needle to get deep into the vein. We got all of the important labs before the vein blew out.

The next trip is to the Pulmonary Function Lab for PFT testing. This basically consists of normally breathing into a machine for several seconds, then taking as deep a breath as you can and pushing it out of your airway for as long as you can. They are painless, but my whole appointment rides on these things so it's easy to get anxiety about them. The results were better than 2 weeks ago (though only slightly) which made me smile and not so hesitant to go to Radiology.

Radiology at this hospital is like a black hole. Some of these people have probably been in the waiting room for days, watching soaps, not even realizing that it's a different day of the week and it's snowing outside. I am always getting normal chest x-rays so I get called pretty quickly. I always have the discussion about putting the gown on or not. I wear a tee shirt and a tee shirt bra for a reason. I'll slip the bra off for the x-ray if you want to be really careful, but don't make me totally undress into a gown that is meant for someone 600 lbs (aka your normal sized patient). Once that battle is solved, the real war begins begins. THE PREGNANT/ NOT PREGNANT discussion.

You tell them that you are not pregnant and their first reaction is to say "you know, you can tell us, we won't tell anyone" . So you say it again "I'm not pregnant" and you have to write the date of your last period and sign that you aren't lying. I imagine most girls are like me and just make up a day. Like, I don't know. It's one of the few things NOT stored in my iPhone. Not to mention, the way I look and dress for these early morning hospital visits, I don't see why the technicians are thinking I'm getting impregnated every time I turn the corner. WOOF!

So I finally get into seeing the doctor. The famously helpful, Dr. Luis Angel. It's pronounced Ang-el (like "the" in Spanish) if you're wondering. I expressed to him all my problems and I am happy to say that he sat and listened, really listened to all my pains and complaints, both mental and physical. At the end of our conversation, we had the beginnings of a game plan. It was stressful to think of the new treatment I will be starting and having to put school on hold (AGAIN), but also so comforting to know I am in the hands of a doctor who truly believes that I am determined to get better, motivated to have a life after this illness, and smart enough to make a difference in this world, given a chance to get back into the game of life. If a man who has seen hundreds of sad and hopeless cases to says that I am not one of them, who am I to second guess him?

I'll post more as I know more. Hope you are all staying warm as Abel and I am!

Living.

2011-01-29T02:08:00.000-08:00

So let's see, it's 4 am and I'm blogging. This can never be good.

Truth is, I floated off into sleep around midnight like a little Ambien baby and awoke 30 minutes ago feeling wide awake. Funny how that never happens on the days when I NEED to wake up early. Yes, it's Whataburger breakfast time, but I already made a drive-thru trip in my pajamas Taco Bell 5 hours ago. One late night drive thru binge is fine, two would border on pathetic. So I decided to sit and enjoy the peace and quiet that is so rarely present in West Campus, and in life in general.

This week had some unexpected challenges. On Monday, I attended my first day of class since October. I was understandably nervous, but I thought it was normal butterflies. The last few times I was in class, I was knowingly suffering from pneumonia, unknowingly living with a blood clot, and starting to deal with the sad truth that my lungs may be rejecting.

After over a week in the hospital and a 5 day medical induced coma, painfully slow rehabilitation, and finally accepting that my lungs were dying, I felt that I was a very different girl on the West Campus bus Monday. I was ready to be productive again though. I missed having my mind occupied by things non-health related. And I knew that the first time I got a good grade on a test, it would be incredibly satisfying. However, once I got to my building, I stood outside and totally froze. I slid along the side and sat, terrified. I could not go inside. Part of me felt sick and like I was going to die. Part of me wanted to get back on the bus and go home, part of me wanted to slap myself back into sanity. But all of me was completely unable to move in any direction. I was having a panic attack.

I don't know what I was scared of. I've been to class in the same building, same classroom since I was a freshman. It wasn't an astrophysics class. Why couldn't I do this? I sat for over ten minutes outside the building just breathing and trying to picture how good it would feel going back home after class was dismissed. And I dreaded the idea of writing my professor, who was so gracious to let me into an already full class, and tell him I missed the first day cause I had a freak out. So I moved inside the building to the stairs. And I sat. For about another 5 minutes, I talked myself off this mental cliff I was dangling from. A few minutes later, I coaxed myself onto the elevator. Once in the front of the classroom door, I sat a few more minutes until the feeling of flush left my face and I no longer felt like vomiting. Then, only 2 minutes late, I crept inside. Immediately, we began talking and working with groups on case studies. We were discussing everything from osteoporosis to fad diets to H1N1. I knew this stuff. I immediately felt good again. I walked out of class and once I got home to my apartment, I was emotionally exhausted, but so proud to have overcome a mental breakdown.

Throughout all I have dealt with in life, I can truly say this is the first time that I am battling every day to keep my mental health intact. My mind and body are telling me to stay melancholy, stay in bed, don't answer your phone, find excuses not to go out. It feels like there is a different person inside of me. Every day has become a conscious effort to not let the disease that is rampant in my physical body migrate into my mental state as well. On the days that I don't fight, I stay blah. Not good, not bad. I sit, watch hours of Food Network, read a few pages of a book, cuddle with Abel, and let my nighttime meds just take me away. But on the days that I do force myself to get out, shower, run errands, go out with friends, I always feel better as I'm drifting to sleep. I need to keep reminding myself of that. Keep fighting in every capacity.

Ever since New Years, I've been thinking about when I die. I know, it's morose. But it is possible that these next several months or years could be my last. Being ignorant about my odds when I was 12 was one thing. Now I'm 22 and I need to look at my situation truthfully. When it rang midnight and we all cheered and kissed, I felt a sigh of relief. Now, if I lose this battle, my tombstone will read 1988-2011 as opposed to 1988-2010. If I make it to my birthday (which I fully plan to. I have to host a bachelorette party and be a maid of honor that month!),they can say "She was 23" in my eulogy. While on the outside it all sounds so depressing, there is a bigger thing I want to get across. If I did start giving in to all my sadness and anxiety and fear of the unknown, am I really still living? If I curled up in bed from now on, spent my days and nights watching HBO and never leaving my little apartment, if I let this disease just take its course and never asked for a smidgen of my normal life back, then I don't want my tombstone to say 2011. I would want it so say April 27, 1988 - July 5, 2010, the day I began feeling short of breath and my life slipped away.

However, if I keep myself going and continue to be the good daughter, good sister, articulate thinker, and loyal friend that I was before my rejection began last summer, then I can proudly say I LIVED till the day I died. As corny as it sounds, that is my new goal. The last thing I want is to feel like I was living until 22 and dying for the rest of the time after that. This disease may take me, but if it does, I want to go out saying that I participated in this world until my last day.

God willing, I become better. And I can look back on these days a long time from now. I won't have regrets that I wasted what should be some of the best years of my life overcome hopelessness. And if a year from now I get hit by a bus and killed, I want my tombstone to say April 27 1988 - January 29 2012... and she lived every freaking minute of it.

Evaporated

2011-01-19T23:47:00.000-08:00

Blind man on a canyon's edge of a panoramic scene.

Or maybe I'm a kite that's flying high with Random dangling the string.

Or slumped over in a vacant room, my head on a stranger's knee.

I'm sure back home, they think I've lose my mind. - Ben Folds

Do you ever have a day, where you feel that you are floating alone in the middle of an ocean? No one or nothing can get close enough to see that you're in distress.

Two days full of disappointing and stressful hospital visits have led me to feel like this.

I am struggling to find the right combinations of medications to help me live the best I can for the time being.

There have been countless moments of dizziness, disorientation. There are times my blood pressure is dangerously high. There are other times that it drops so low that I'm passing out and vomiting.

My shortness of breath is seeming to return just as quickly as it left.

And through all of this, I begin to question my decisions about the doctors I put my trust in.

Could I be feeling better right now? I am torturing myself with "what if".

In the coming days, I pray to find the courage and assertiveness to put my needs first and discard the politeness that has lead to so many unreturned calls and unsolved problems.

I will not let my body fall backwards without doing everything possible to save and improve it.

But at the end of the day, after all the unanswered calls, appointments across town, constant physical stress, being incorrectly medicated, and test results that were shockingly poor, I have no energy to fight anymore.

I pray every night for God to take away all the sadness and disappointment I felt about what happened in the past 24 hours, and help me wake anew to be a loving, hopeful, brave person once again. Please pray with me, that I can be strong enough for my body's physical challenges and patient enough to work through the emotional stress on a daily basis.

Wishes and Blessings

2010-12-19T22:10:00.001-08:00

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

2010-12-06T21:42:00.000-08:00

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

2010-11-29T04:46:00.000-08:00

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...

2010-11-29T02:44:00.000-08:00

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

A Holiday Update!

2009-12-02T22:02:00.000-08:00

It's been awhile since I've posted anything on here, but I wanted to just tell you how much I am loving feeling better. My life over the past couple months have been magical! I've been truly blessed to not get sick with any of the flus going around. I'm taking advantage of my time off by cooking, baking, making holiday cards, and learning how to sew. I'm truly cherishing my time at home with my parents knowing I'll be back in Austin, going full speed ahead in about a month.

I'm in love with glitter, adding it to everything from Christmas cards to pictures of Jordan Shipley.

I threw a small Thanksgiving dinner party about 2 weeks ago for 9 of my friends. I made a turkey, all by myself. I wish I had taken a picture! I also made stuffing and chocolate and bourbon pecan pie with homemade vanilla beam whipped cream. My friends overwhelmed me with their willingness to contribute. Everyone brought side dishes from mac and cheese to creamed corn to green bean casserole... everyone wanted to help! And everything was delicious. It was so magical!

I have watched my Texas Longhorns go 13-0. I won't be at the Big 12 game this weekend. Buuut I'll be watching, waiting for it to be official that we're going to the NATIONAL CHAMPIONSHIP. I already have my game ticket, flight, and hotel!

I cannot wait for Christmas to get closer! I'm so thankful for all the blessings of the past few months and I can't wait to take advantage of the season and use my time to spend time with family and make festive crafts, food, and sweet treats!

I want to thank everyone for the love and support I have received! Even throughout one of the most difficult times in my life, I have always felt truly cared for and totally supported, making this road so much easier to travel. I truly believe I could face any trial that comes my way and come out stronger as long as I have the love of my beautiful friends and loving family! God bless you all this Christmas season!

-Mary Katherine

Less Than 2 Weeks Now

2009-10-04T22:50:00.000-07:00

Short Update.

2009-10-02T20:49:00.000-07:00

Okay, I apologize for what I'm sure are many typos and grammatical errors from my last entry. I honestly don't even remember writing it (Thanks, Dilaudid!).

I am feeling relatively good. I gained about 20lbs (just imagine) of excess fluid from being in the hospital. It's been rough having none of my clothes fit me, and getting all that excess weight off. I've lost 11 lbs so far.

I'm off all pain meds. I have a fever at night. It's still hard to get up off the couch. Good, bad, and lazy.

At the end of the day, it's still Friday night. All my friends have something better going on tonight than sitting on the couch watching Chelsea Handler. Maybe next week for me.

After 3 Days of Misery, Now Relief

2009-09-28T18:59:00.000-07:00

So the last time I wrote, everything seemed to be cupcakes and rainbows with the transplant. I had hardly any pain and I was up and moving only hours after waking up. Then reality set in. After two great days of putting on make up and being all smiles, things changed. The pain ball that was attached to my incision was removed. So it was just me and the pain. I've been through a lot in the past 9 years. From a lung transplant, to shingles, to getting my gums burned off, to pneumonia, to breaking my arm and recently my leg; you name it, it's seems like I've been through it all. But this was the worst pain I'd ever experienced in my life.

My incision hurt like nothing I'd ever felt before. Any movement of my torso caused extreme pain. It was like someone was twisting a knife into my incision. Getting out of bed to walk to the bathroom was enough to take my breath away to where all I could do was scream. Walking was impossible. The thought of getting out of bed was enough to bring me to tears. I was convinced I had something terribly wrong with me.

After 2 days of this, with the pain only getting worse. We decided something needed to be done. About midnight Saturday night, we got an ultrasound. My new kidney was totally healthy. There was no fluid surrounding it. It was perfect. This brought both relief and confusion. What is wrong?!

On Sunday, we all were at the end of our rope. We begged the doctors for answers. Finally, we have some. During the surgery, muscles and nerves are cut. Swelling is a natural part of surgery, but unfortunately, when you're small, the swelling can be much more uncomfortable. All these cut nerves and tissue are stuck in my tiny tummy and this can cause nerves to press up and crimp against things, which can lead to the extreme pain. So there's a con for being skinny. If you need a kidney, I suggest you get a bit of tummy going. You're gonna need some extra space.

Luckily after lots of trial and error, we finally found a drug that gave me some relief. After morphine, tylenol with codeine, and fentanyl all failed miserably, I met dilaudid. One shot of that in my IV and I was walking, washing my hair, putting on make up. It's a real love story with dilaudid. It seriously saved my sanity. I am hoping to go home tomorrow with the pill form of my new boyfriend. In all seriousness though, I'm hoping to be off the drugs as soon as possible. My doctors say that the swelling will get better every day.

I think I've finally turned the corner, with help from the pain meds. I should be going home tomorrow. I can't wait to hug my little Claire and sleep without being interrupted. I'm finally feeling good. Overall though, this was a great experience. Great doctors, expert surgeons, and a loving family around me to deal with all my moodiness. I cannot wait to rejoin society healthy and happy. I'm so grateful for everyone's prayers, support, flowers, and sweet treats! There's so much love in my life, it's crazy and I'm truly in awe of it.

End Stage Renal Failure: The Season Finale

2009-09-23T20:02:00.000-07:00

I'm sitting here in ICU. And it's done. And so the hard work begins. The surgery is the easy part for me, especially with how sick I've been. I mean, I got propofol. How exciting is that?! If it's good enough for Michael Jackson, I'll take it! I didn't have any psychedelic Colt McCoy National Title themed fantasies, which was disappointing. But I do have a morphine button that can dispense some pain relieving greatness every five minutes so things kind of evened out.

I'm no longer nauseated. My stomach doesn't feel like it's turning inside out. I'm not exhausted and I'm not freezing cold. My hemoglobin has gone from 7 to 9.5 already. My incision hurts but you can't make a salmon frittata without breaking a few eggs, am i right?

The love and support I have seen has been truly overwhelming, in a good way! I want to be sure to take the time to thank of each of you individually for sending me such positivity and showing such respect for me in this really hard time.

I have an uphill trek ahead but I'm so excited about what the view from the top will be. Please continue to pray for me, for my Aunt Cheryl and for all the doctors and nurses. Thank you, from the bottom of my heart! Love, Mary and her new kidney

Let's Do the Damn Thing

2009-09-22T16:24:00.000-07:00

In terms of tomorrow, I'm not scared. I'm just really ready to get this over with. I want to get in, get out, and involve as few people as possible. This is nothing against all the wonderful people who love me and have been concerned for me. This has a lot more the do with the fact that the hospital turns me into a mood fourteen year old. All the sudden terms like "no one understands me!" and "why does everything happen to me!?" seem to spew out along with plenty of tears. So you can imagine why in the middle of a meltdown I wouldn't want some well meaning visitor to walk in... AWKWARD! Not to mention I'll have a central line coming out of neck, a little tidbit I learned today.

I'm not totally anti-visitor. But if you get turned away, I apologize in advance. I don't mean to be such a mess!

My biggest fear is disappointment. I'm pinning all my hopes and dreams for the future on this transplant. I worry I'm going to feel better, but not a lot better. But worrying doesn't help anything. So, I'm trying not to do it and just trying to get excited about getting drugs tomorrow.

I'm sure I'll be back texting everyone and back on Facebook in no time. I'll talk to ya'll real soon.

With Just a Few Days Left

2009-09-21T00:10:00.001-07:00

Preparing for surgery is very similar to preparing for a trip. Though my destination is neither fun nor exotic, I still needed to get my life together. Some people have to get their financial things in order, bills paid, and such. Other people maybe like to have some sort of special gathering or have heart to hearts with all their close friends. Well, I've never been one for serious stuff. However, there were still some important things weighing on my minds.

For one thing, my Halloween costume. I know, it's September. But in Austin, there's only one place to get your costume. The creme de la creme of costume shops: Lucy's in Disguise with Diamonds on South Congress. My first year, I was fortunate enough to see Andy Roddick and stand right next to him while at the cash register. Though I have yet to reunite with Andy, I still go to Lucy's every year. The problem is that if you wait til mid-October, half of Austin is there and it's impossible to move around freely let alone find something in your size. I'm gonna be out of commission for the next few weeks. And once I can get back to running errands, I doubt Lucy's is going to be my first stop. So, it was important to go before my surgery. For the record, I settled on sexy schoolgirl this year.

Then there's the priority of football. I will be missing the UTEP game. I wish I could say I was at every game this year when we all look back at our National Title trek to Pasadena. But at least I have a pretty good excuse. I didn't want to be depressed about missing the game or even more importantly, tailgating. So, I decided to get my fill this week and tailgate for about 12 hours. Arriving at the tailgate spot before sunrise for a 7 pm game was not the wisest decision I'd ever made. It's hard to keep that stamina when you're healthy, let alone ill. By the time we had destroyed Texas Tech and gotten back home free of raider rash, it was midnight. I felt like passing out and throwing up all at the same time. Luckily I was able to drag myself upstairs and into bed. A good 12 hours of sleep later, I felt a little better. I don't think I'll ever recover fully though. And the good news is that not being able to tailgate this week is A-Okay with me now. In fact, if someone told me I had to redo yesterday all over again tomorrow, I'd probably cry. However, I will be sad to miss the game, especially Colt and Jordan (did you know they're roommates?). I just need to make sure the hospital gets Fox Sports. Oh and if you are reading and were planning to visit on Saturday, you can reconsider that now. That goes for doctors, nurses, and random techs who wander in wanting to weigh me for the 3rd time.

Besides that, I don't know what else there is to do, besides of course, setting my DVR to record all my favorite shows. Like I said, I'm trying to compare it to going on a 5 day vacay. The trip just went really bad and I somehow ended up in the hospital. I don't even remember how. See, that's not so scary.

Things I have been doing that have kept me from Blogging

2009-09-06T23:17:00.000-07:00

baking
decorating
breaking things
surviving ikea trips
eating at kerbey lane
becoming addicted to hbo
reading books
drinking coffee bean
being everyone's new favorite sober driver
feeling way too old at frat parties
going to alamo drafthouse
tailgating
searching for pretty eyeshades
mix 94.7 90's weekend
5 free wing coupons
disputes with our apartment company
watching OU continue to suck
making my bed every day
writing threatening notes to the people parking in my reserved spot
twittering
joining the pragertopia podcast so i never miss the male/female hour
watching Texas come out with a glorious win: 59-20! 1 down, 11 to go!

So, in this case, no news is good news. I keep myself rested. I feel no anxiety about the coming weeks ahead. I feel little symptoms of my disease at the moments I do feel bad come and go quickly. I have overwhelming feelings of nausea that tend to come on quickly and without warning. But laying down for half an hour and closing my eyes usually leaves me feeling good as new. No medication needed. The biggest problem is feeling short of breath with the slightest exertion due to my worsening anemia. This wouldn't be a big problem except I don't want to slow down. If I was okay with never getting up or going anywhere, I probably wouldn't even notice it. But since I don't want to miss any of what is now Junior year 2.0, it's just a side effect I'll have to deal with. And sometimes it's okay to slow down. But for the most part, it's not something I intend to do! Consider no news good news! Love love love.

The Healing Powers of Austin, TX

2009-08-25T17:30:00.000-07:00

I'm not sure what it is about going from San Antonio to Austin. But something about that drive, looking at DKR, and Miley Cyrus's Party in the USA on full blast and I was a new person. I mean, the treks back and forth to the car carrying boxes were tiring. And I found myself having to sit and catch my breath. But there was no mommy or daddy there. If I wanted to get that stuff out of the car and up to my bedroom, all I had was me, myself, and I. There was a possibility I'd get really sick and curl up in a ball on the bathroom floor and need my mom to come rescue me. By the grace of God, that never happened. I walked around west campus like anyone else. Sure I was secretly out of breath and my body temperature felt way too high. But no one knew that. I just got to be Mary, the new version of course. The version that sits for hours at Abels and doesn't order a Texas Tea, or an H-Bomb but instead a simple Coca-Cola. And the new version who calls it a night at 12:30 instead of 3:15. It was a simple night sitting around a table in bar but for those few hours, I wasn't sick. I was Mary, everyone's friend who made jokes and smiled and was exactly the same as before she left. Except there was no rum in this Coke.

My "big" accomplishment of the trip was getting my duvet inside my duvet cover. I couldn't wrap my little brain around how to do this without giving myself a heart attack. Eventually I regressed to the age of about 6 and crawled completely into the duvet cover, with the comforter in hand and, pretending my West Elm duvet was some sort of tent, went around nook and cranny of it til the cover was stuffed perfectly and my hair was a giant static ball. If I had a reality TV show, and it hadn't been cancelled and I hadn't been asked to leave the country because of my shenanigans, then tunneling in the duvet would have been my "chicken of the sea" moment. But the fact that I did this without passing out or wanting to vom was really exciting and got me thinking about all the other little things I could do around my new place. For the first time since I left Austin, I felt like getting up and moving. There were things I wanted to accomplish and none of those things involved sitting on the couch. Okay, maybe a nap midday.

I know tomorrow I might feel like complete crap again like I did over the weekend. But I also might feel okay. Who knows. I like to be optimistic though. I know most of this is probably divine intervention and there is no logical explanation for why I am able to half the things I do with a creatinine this high (mine is 5.5. Yours is probably 1 or less.). But I don't need an explanation. I'm just gonna enjoy it. If I completely break down tomorrow, I'm sure I'll be heartbroken. So I'll do my part in staying hydrated, eating what I can, and leave the rest up to God.

Prayers are still awesome. Things are moving along with donor selection but nothing is final yet and I don't want to give information out until it's totally decided upon. Pray for wisdom for the doctors, myself, and my family. Big decisions are coming every day. But at least things are moving.

A New Day.

2009-08-24T13:03:00.000-07:00

I woke up today with a new feeling in my heart. Peace. I don't know what's going to happen. But whatever it is I'm okay with it. Nothing has changed with the progression of my surgery. Every day is a day closer to dialysis. I have been suffering for weeks upon weeks to avoid dialysis and having a central line put in. But after a weekend that was spent on the sofa curled up in the ball, questioning whether I should go to the ER or just take another Phenergan and pass the time sleeping, I finally reached a state where the disease seemed worse than any treatment could be. Yes, hook me up to a machine. Please, clean out whatever is making me so sick.

Before, dialysis seemed like something that would keep me prisoner and now it feels like the disease is the thing holding my hostage from the world. So go ahead, give me a central line. I wasn't exactly asking the frat guys to take a number as it was. I'll just stick to my M.O. of being really tough and hardcore.

I had gotten into this mode of feeling so sorry for myself laying on that couch. This morning, I starting getting ready for my day when Sunday Bloody Sunday came on my iPod. My mind went to the U2 concert I have tickets to in October and I was like "You're going to this. You're going to hear Bono. Unless you are plugged into the wall, you are going to get there. It's not that far off. You can do it a little longer. Put on some decent clothes, brush your hair, and quit acting so worthless."

I can barely eat anything that isn't bland and disgusting or some form of Jello. So what. I'll get super skinny and I'll secretly kind of like it but be really concerned on the the outside. In all seriousness, I do miss my meat and cheese. I still haven't tried the new cheddar burger at Whataburger and it's breaking my heart. It looks amazing but I'm pretty sure I would just projectile right there in the booth after one bite of so much beefy cheesy goodness.

I'm thinking of heading to Austin tonight to soak in my apartment and friends because by tomorrow all my optimism may have drained out of me and my stomach may be back to rejecting everything I send it's way. The point is that isn't the case today. Today is a good day. That's all that matters.

Slow Moving

2009-08-23T18:34:00.000-07:00

We still don't have a donor. And It's looking more and more like I might end up on dialysis. Sicker and sicker every day. I'll update more soon. There's a lot of things up in the air still. Please pray.

On the Bad Days...

2009-08-16T20:43:00.000-07:00

...And in the bad weeks... It's important to remember good days. This guy had probably had some bad days too. But it was close to his sickest that he made his biggest shot. I don't really compare to Sean Elliott, unfortunately. All I've done today is watch Aliens of the Ancient World on History Channel (as in aliens, not immigrants. the "experts" they interview on this subject provide enough comedic relief on their own to make it worth watching). So I'm not sure what my point is here. I just like the feeling I get watching old Spurs videos. And I like to think I still might be a little bit useful. I’m going to make some muffins. I can be the Sean Elliott of the kitchen for now.
And I hope next week is better both physically and emotionally. PS: Enjoy the sexyness of vintage Spurs. A little David Robinson is always a good thing.

A Lightbulb (Moment) in the Darkness

2009-08-10T21:27:00.000-07:00

Today I finally had to sign a paper withdrawing myself from UT for medical reasons. It was painful to do so. Part of me kept hoping I'd go to the doctor one day and they be it "it's the strangest thing, your kidneys seem to have completely healed! We don't need to do a transplant!" And since I'm being completely unrealistic, I'm gonna throw in that my boobs got magically big and my hair was really thick but not too thick. It was all part of some crazy new medical condition that I have that's actually positive. Oh, and this condition is so crazy and so interesting, I get to go on Oprah and chat it up with her. I'm not a big Oprah fan. There's a lot "rediscovering yourself" and other buzz phrases that just make me uncomfortable. I really just like to see the cool stories she showcases. Like the girl who woke up one morning and her kidney disease was cured. Oh yeah, I forgot, I made that all up.

Anyways, back to what we're actually having to face. With a transplant in the coming weeks (God willing), I will miss the beginning of classes and possibly a nail-biting season opener against Louisiana-Monroe. Follow up appointments will start out probably every week or so and then move to be more spread out as time passes, but I'll still have to be in San Antonio during the week more than I usually would be. Balancing commuting with classes would probably be very stressful. I'm glad I don't even have to think about it.

Oh, also, Swine Flu. That's a reason right there to drop out of school. That's also a reason to demand free shots at Blind Pig even when it's not your birthday. Totally unrelated story. Ask and I will tell you at a later time.

So, I'll be taking a little break this semester. I'll still be attending every football game unless I'm in the hospital and if those aren't on TV, I'll probably bust out AMA. I know where to put my priorities. If anyone has any fun ideas about part time jobs or volunteer work, I'd love to hear your suggestions. I've been wanting to possibly find work or a volunteer position in a doctors office or hospital. So I still might get swine flu. Don't ever count me out when it comes to weird diseases. Not to be negative about all my health problems. Because I really am not. And I know I was sounding anti-Oprah earlier, but she is a smart lady overall. I caught an episode of hers over a month ago and she was sharing her health problems with the world. I learned Oprah was dealing with high blood pressure (high five girlfriend), heart palpitations, and being on heart medication. The word transplant had just been put in the discussion between my doctor and I. I was feeling so angry, I really did hate being me. Why did things on me keep breaking? I'm 21, I'm young, I'm shouldn't need this. I was feeling so sorry for myself. That's when Oprah said this:

"One of the things I had to do was learn to embrace this body that I have and be grateful for what this body has given me... God blessed me with this body. I mean, I could weep right now thinking about the love and appreciation I have for this body. For that, I am truly grateful."

My eyes welt up with tears and in that moment my perspective did a complete 180. I realized my body was not my enemy but a gift that despite being so sick and so weak was still waking up and working for me every day. I felt so overwhelmed with emotion. Then, all the sudden, I felt silly. There I was, 4 pm on a weekday afternoon, crying in my living room in front of Oprah on the tv. That's when I rolled my eyes and thought "Dammit Oprah! You finally got me crying! Are you happy now?!" I had finally had one of those "lightbulb moments" that Oprah always talks about. I'm happy to say she didn't TOTALLY brainwash me at that moment and I've been able to resist buying Surius/XM Radio despite the promise of Gayle King being on Oprah Radio every day. But I DO kept that quote in mind, and I try to be grateful, even when I have to give up the things I love like my tequila, my summer break, and now my most amazing UT. Hook 'Em Horns!

Good News

2009-08-08T11:54:00.000-07:00

Thought I'd just share that I'm feeling pretty good today. As in, it's 2pm and I haven't felt nauseated or overwhelming dizzy. I haven't had a tension headache and I haven't needed a nap. Also, since I got sick, I haven't been able to eat any meat. Something about it, I just couldn't bring myself to get back on a normal diet. I'd eat a little bit of seafood, and mainly a lot bread. Well today, I ate half a hamburger. Yay for small victories. It won't be long before I'm making late night runs to Jack in the Box and ordering some ridiculous combo meal that I secretly scarf in my bedroom then throw away in the outside dumpster so nobody will ever know. Wait, what?

Anyways, I know a lot of people have been praying so I thought I'd throw something positive out into the world. If you have time to keep praying, that would be awesome, and if you have ALOT of time, you could even pray that I get a new car. But that's only if you're really bored. In which case call me. I'm really bored too. We could talk about the History Channel special I watched on Hitler's ties to the occult that I was able to catch the other day. Maybe some other time? Sounds good.

I Am Having Trouble Understanding

2009-08-07T10:40:00.000-07:00

Yesterday, I was watching Man vs. Food on the Travel Channel. Adam Richman finally made his way to San Antonio and I'm really not sure what took him so long. While I only caught the last 15 minutes of the program, I saw more than enough. More being the key word. Adam is a sizable guy, and these locals who were cheering him on as he ate some stupidly spicy hamburger were probably doubly as big as Adam. There's probably a 99% chance one of them will be sitting next to me in clinic at the Transplant Institute next week too. Thankfully, kidney transplants have become a safe surgery with minimal risk and minimal recovery time. But I worry that because it's become a fairly common operation, people are going to take their health for granted even more than we Americans already do. There's a solution for every problem that we bring upon ourselves. We all too often are just looking for a magic pill or in this case even operation. Let me just tell you that while the surgery is easy, the weeks leading up to it are nothing but.

Last night, I was laying in bed playing out a routine that has sadly become all too familiar. I was curled up in a ball, trying my very hardest to concentrate on anything besides the overwhelming feeling of nausea that seems to sneak up on me sometime between my last dose of medication and the second episode of Sex and the City on TBS. Renal failure is no walk in the park. In fact, it's quite unpleasant.

There's times I feel like I'm losing my mind. I'll start a sentence and not remember where I'm going with it. My brain is not sharp. I can't concentrate on things. I'm dizzy standing up, sitting down, all the time. Even words off the television makes me dizzy. And books have become nearly impossible, which makes me sad. I bought a new David Sedaris book which unfortunately doesn't get any funnier when you have to read the same page three times to understand it.

With all this free time, I would have imagined myself cooking up a storm. But I can't seem to muster the appetite or the energy. Simply being, living and breathing is all I can seem to handle these days and even that requires a two hour nap at some point to recharge. I'm never hungry. I remember in the early stages of my kidney disease, when I would WebMD "renal failure" and see loss of appetite for a symptom, I'd wonder why I'd have some of the other symptoms like high blood pressure and never that awesome side effect. I mean if I'm gonna be sickly, do I have to be chubby too?!

Well now I miss food. I miss drooling over meals. I miss craving things. I miss planning where I wanted to eat. I miss snacking. I miss being hungry. I miss cooking and the satisfaction it used to bring me to make something and have it taste good. These days, I'd just assume eat air.

I've come to realize I'm a special case of medication induced renal failure and that type 2 diabetes is the number one cause of renal failure. Let me say I'd never wish what I'm going through on anyone, even my worst enemy, if I had an enemy. It's physically and emotionally exhausting. And because you have energy for nothing else, it's all consuming. Last night, I couldn't help but wonder how anyone could allow this disease to take over, knowing in so many cases it is totally preventable. I don't say this to judge anybody. We all have our bad habits. I had to break up with my boyfriend Jose Cuervo a few months ago cause I realized it was doing nothing but bad things for my health, so I know how it goes. But if you or someone you know is at risk for renal disease, and you live in this city that is ignorant to the downside of a 3 1/2 lb cinnamon bun, let me tell you that what you stand to go through in renal failure is not worth it. Man vs. Food. Man does not always win, at least in the long run.

Bob Stoops hates Puppies, Jesus, and Healthy Nephrons

2009-08-05T08:27:00.000-07:00

Some of you might be wondering what it was that pushed my kidneys from not quite perfect to completely rotten. I’ve got two words for you: Bob Stoops.
Yeah. That’s right.
Okay well, not exactly. At some point mid-July, I probably ate at a restaurant and had a lovely meal. The problem with that lovely meal was that whoever prepared it wasn’t feeling too hot. This same person also apparently wasn’t familiar with this weird little ritual called hand washing. So along with my lunch (I’m picturing this evil little thing appearing in an innocent looking salad) came a parasite, which I have affectionately come to call Bob Stoops.
After about a week of incubating in my tummy, Bob Stoops decided to rear his ugly head. And then, it was the beginning of the end. The timing was really confusing because I had just gotten out of the hospital after checking into the ER for a migraine. So I thought I had picked up a little bug by touching some surface there. Also, my blood pressure medication had just been raised. It’s made me sick to my stomach in the past. Was it possible that this new high dosage was tearing up my insides again?
All these variables, plus the fact that I was out of the state for 5 days meant that this whole thing went unchecked for well over a week. When I got back to Texas, I went to the doctor and got a string of tests done just to safe. All the usual bacterium and viruses came back negative but one thing did stand out: This had taken my kidneys from bad to worse. I needed to get to the hospital ASAP.
A few days later, and I get the news every Cosmo girl wants to hear: you have a parasite. Oh, that’s nice. The one silver lining came when they pulled out the scale on me and I had lost 5 pounds. I tried to hold my excitement. It was the first time I had felt good in days.
I’ve been out of the hospital since Sunday and I’m finally getting over it. Unfortunately, the damage of Bob Stoops still remains and I am left with 13% kidney function. So we gotta get this show on the road. Now that my thighs don’t touch together when I walk, I feel pretty much unstoppable.

21-Year-Old College Senior. Loves Mexican Food. Needs Kidney.

2009-08-04T10:13:00.000-07:00

I’m a very private person. That’s why I am writing this blog.
Come again?
Okay let me elaborate here. I’ll talk your ear off about my feelings on Bobby Flay, Oklahoma, and my constant desire to lose about 7 pounds. One thing I don’t like to go on and on about is my health problems. I kind of like to be in denial that they even exist. But I got slapped with reality recently. So here it is: I’ve been sick since I was 12 years old. For those of you who aren’t up to speed, I got mysteriously ill when I was 11 and in less than a year, I needed new lungs. As you probably know, transplant recipients have to take immunosuppressant medications their whole life to avoid rejection. You take them and you’re all good. Right?
Well…
It’s sort of a double-edged sword. You keep those lungs nice and healthy and take the drugs like you’re supposed to. But by doing what you’re supposed to do, you’re actually killing other parts of your body. These drugs wreck your kidneys. Most people get about 5 years out of them. I got almost 9. It’s hard for me to say “lucky me” even though I guess 4 extra years is pretty good. It’s about to be my senior year though. It’s about to be FOOTBALL SEASON for Christ’s sake and I need a kidney. I know it’s not exactly a tragedy. But when you’re 21 and usually your biggest dilemma is what to wear and where to eat on Friday night, and all the sudden you’re being handed pamphlets about your new organ and you can’t even make plans a week in advance, it’s all very hard. Not “Flight of the Conchords is being cancelled” hard. More like “Oklahoma is going to the National Title game” hard. Now you’re starting to get it.
In recent weeks, I’ve been dealing with being physically ill, emotionally exhausted, and the fact that I have no control over my life. I’ve made this blog so I can keep everyone updated with this process without spending countless hours on the phone and replying to emails in my free time. It’s not that I don’t appreciate the love and concern each of you have for me. I just can’t talk transplant non-stop. It’s depressing. So now we’re all on the same page. And you can all spare me the “I’m so sorry” speeches. I mean, come on, it’s Shark Week on the Discovery Channel. Let’s not ruin that.
This isn’t saying you can’t ever call or email or text me. I love my friends and family and I know ya'll have genuine concern for me. Also, this may be the first some of ya'll are hearing about any of this so feel free to ask any questions and I'll do my best to answer all of them. I know more about transplants than some MDs. But if there’s days I can’t or don’t want to talk to people, that’s where this comes in. These past few weeks have been rough, but I am getting to accept this and move forward. I really just want to get back to feeling like Mary Katherine. Easy going, self-deprecating, fun loving, Mary Katherine.