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.
balancing being chronically ill with being yourself. where does one end and the other begin?
Monday, March 28, 2011
Shovels + Rope
Friday, March 18, 2011
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!
Monday, March 14, 2011
One More Night to Run
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
Thursday, March 10, 2011
All You NEVER Wanted to Know About Photopheresis
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 SchroederWednesday, March 2, 2011
The Weight Needs to be Over
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?
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