A Shot to the Heart

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

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

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

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?

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

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?!

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 bone 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!