Along for the Ride

Today is my great aunt Agnes's 95th birthday.  I've been thinking about her all day, and I was digging around in my computer earlier when I came across this piece of writing I did during college.  So many of my childhood memories involve her and my uncle Carroll.  I left this piece in its original form, so while I was definitely a young writer, I really enjoyed rereading it.  I hope you do as well... Here's to you, Aunt Agnes: The World of Aunt Agnes’ House The humid Arkansas air crawled around my body, covering my skin in sticky moistness.  My parents had sent me to stay with my great aunt Agnes for a week.  The memory of my father in his shirt and tie walking quickly through a busy airport while carrying my little Snoopy suitcase was still fresh in my mind.  I looked down from my position, perched on a strong limb high in a magnolia tree.  The neighborhood was calm, with a few distant shouts of children.  As the wind w...

Wow! It's been a long time since I've written. It's been a busy summer so far. I taught elementary creative writing at the summer institute for gifted students (SIGS) this year. It was definitely a challenge because I'm not used to working with such little kids! I've been doing a lot of curriculum writing and keeping busy with tasks around the house too. It's amazing how much got put on the back burner over during the last year or so. It feels good to go room-by-room, checking off "to-dos" on the list. I've been thinking a lot lately about the journey I've traveled this year.  Last night - the 4th of July - we met up with our neighbors and had a good meal and conversation.  After dinner we walked down to the end of the street to watch fireworks.  They set them off just down the about a tenth of a mile away, so it's a perk of living in our neighborhood.  Close enough to enjoy without parking headaches, but far enough away to not h...

So I've been on a bit of hiatus lately, but the good thing about that is that it's a result of being good and busy. Things at work have been crazy hectic, and Mike and I have been chugging along week by week just trying to keep our heads above water. He's been having to work late a lot at work, and I've been up to my eyeballs in papers to grade, school projects like field trips and GT testing, and trying to implement healthy lifestyle changes. Thankfully, I have enough energy to keep going and feel more like my old self! I started dialysis at the beginning of February, so I've been doing treatment every night for a little over 2 months. It's definitely been a lifestyle change, but I'm feeling so much better, and my lab results have been improving greatly. My blood pressure is under control again, and my phosphorus levels are back in range. My energy levels are definitely better, and while I'm not at 100%, I feel like I'm at a solid 85 or 90...

At work we've just started a Biggest Loser competition for the spring semester. So far, I'm down 2 pounds, and I'm hoping that this will give me an "umph" to get started on dropping some weight for transplant. I think it's somewhat humorous that the winner in this case is actually a loser, but that's another topic. I am on the committee for the competition this year. I signed up to help in hopes that it would help me stay focused on my goals. I have struggled with weight my whole life, and while the motivation this time is much different - I need a new organ, not just to look cute in a bikini - the challenge is still the same. The first 40 pounds came off pretty easily because I felt awful and had no appetite. Now that I'm on dialysis, there are some added challenges: 1. I feel a lot better! Yay!!! However, that also means that my appetite is better. Boo. So foods that repulsed me before now sound pretty good. 2. I get calories from ...

So far, I've been on dialysis for a little over a week now. Last Tuesday, Feb. 31, I went to my training session and "passed" with flying colors. Yay!!! Who knew that I would end up learning so much about asceptic technique and medical procedures! That evening I went home with my machine and was ready to get started. I got this nifty cart from Ikea for a great price, and it's PERFECT for holding all of my meds, gauze, tape, catheter caps, and extra materials. The cycler machine fits perfectly on it, and because it has wheels, I can wheel it into the living room or kitchen if I really want to, though I usually just hang out in the bedroom when I'm on the machine. My treatment process is about 9 to 9 1/2 hours long, and I have to do it EVERY day. That's one of the components of PD. Your regular kidneys are working 24/7, so PD tends to be more natural since you do therapy every night. With hemodialysis, you do therapy 2 or 3 times a week for a few ho...

So many people have been asking me about peritoneal dialysis lately, so I thought I would write up a quick explanation of the process. The first piece is the access point - or catheter. The catheter is connected to a tube that comes out of my abdomen about 2 inches to the left of my belly button. The exit site (where the tube leaves my body) has to be treated with extreme care to avoid peritonitis, an infection of the abdominal lining. I have a whole cart full of medical supplies that I use to keep that area clean. A large portion of my training is also devoted to cleanliness - proper handwashing and hygiene - to prevent infection. Even little things, like keeping the shower head cleaned of all mineral deposits and using disposable paper towels to dry your hands, are strategies to minimize the risk of infection. The catheter itself hangs freely, though I cover mine up with 4x4 sterile gauze pads and tape it to my abdomen so it doesn't get dirty or yanked. They make speci...

I've been wanting to write a piece about the financial aspects of illness for a while, but I wasn't sure how to frame it. I didn't want to seem like a whiner, after all we have so many blessings in our lives. And I didn't want to get too political. But the financial part of illness can't be ignored, so I figured I would just lay it on the line. I just ran some end-of-year reports in preparation for tax season, and even though I keep really close tabs on our finances (10 year budget, anyone?), I was still SHOCKED at the amount we've spent on medical bills. In 2011, we personally spent about $17,000 out of pocket. According to the insurance company, the total amount billed by doctors and facilities was $1,077,309.82 (yes, as in 1 MILLION dollars). My "responsibility" was listed as $31,966.64. Some of those bills were written off by docs, which is why our portion was more like $17,000. I know sharing this might be an "overshare", but it...

September 11, 1930 - January 2, 2012 Yesterday we received news that my maternal grandmother, Mama Jean, passed away in Arkansas. She had been hospitalized for a variety of health issues centered around congestive heart failure prior to Christmas, but things had appeared to improve, and we were relieved to know that she had been removed from ICU and taken to a regular room, not needing to be on a ventilator anymore. Unfortunately, she took a turn for the worse yesterday morning, and her poor heart just gave out on her. My aunt and step-grandfather were with her, so we were relieved to know that she was not alone. Of course, it was a difficult day for our family. After all the struggles we've faced this past year - my dad's health, my health, my grandfather's cancer, my grandmother's hospitalizations - this blow hit us pretty hard. While we knew she was ill, it was still a bit unexpected. One thing about death is that it reminds us to pause and think about...

I suppose I should begin this entry with some clever look back to 2011, or perhaps some insight into all that I've learned about myself in the last year. Or maybe some new resolutions. But that all feels so trite. So, here it is... Jan. 1, 2012... and I do feel that inherent sense of optimism that comes with the new year. But I also feel fear, dread, peace, and hope. It's an interesting blend of emotions. The last few weeks have brought some big changes in my medical journey. I've switched doctors and am taking all of my care to UT Southwestern now. Mike and I are slowly but surely digging our way out of the medical bill mountain, and my journey continues. Last week, I had my long-awaited meeting with the nutritionist at UTSW. It was WONDERFUL. There were a couple of things that became very clear: 1) The first nutritionist I saw almost a year ago was soooo off-base. She had told me to only eat 15 mg. of protein a day, which is darn near impossible. Turns ou...