Friday, October 31, 2014

"Dance of the Sugar Plum Fairy" -Tchaikovsky

Erin Forrest is super amazing and strong and encouraging and wonderful! As stinky as POTS was for the both of us, it brought us together. She lives in New York City and on her way out West a couple years ago, she even stopped at my house to visit. Talk about a ridiculously fabulous friend. And tonight we texted back and forth. I was all cheered up. :-)

I'm frustrated I couldn't find the pics of us together when she visited, but here's one of her with a famous ballerina.

Erin is on the right. She is an amazing dancer, choreographer, and teacher. Baryshnikov even said so!

So here's to you, my dear, enduring friend. Let's hope I can make it out for the NYC marathon... or half-marathon... or just walking a 5k sometime. You're the best.


Thursday, October 30, 2014

"Something More" / Sugarland

Today's music:Something More

Mom had a lot of breakthrough pain on Mon, Tues, and Weds. On Tuesday she had a doctor appointment and was advised to go back to the hospice pavilion. (Me: nooooo.) Luckily they only kept her for a few hours, saying there wasn't much more they could do for her there than at home. So she got to come home and sleep in her own bed and everything. Small victory, even though she had pain again the following night and morning. But today she hasn't had any breakthrough pain so far. That's something.

I have to focus on the good stuff every so often.
1) Gas is $2.99 a gallon here! I spent less than $50 on a tank. Yay!
2) Autumn leaves smell like cross country smells like my faith in middle school connects me to my youth kids.
3) Just four weeks until the Long Grove Turkey Trot! So nice to have something on the calendar that's just fun to look forward to.

Recently I signed up for an online dating account. I am not proud of this, but it does remind me that my identity and my hobbies go beyond "caregiver" and "sneaking naps as often as I possibly can." Not much luck so far, but it is highly entertaining to see the kind of stupid stuff guys will put on their profiles. Fourteen selfies in the mirror, really? No no no, my friend. This is your way to an A:

Grand Total of Five Excellent Pictures:
1) You, preferably a semi-professional picture taken by your buddy from school who minored in photography.
2) You with your buddies.
3) You decked to the nines at a wedding. Bonus points if you're giving the Best Man speech.
4) You doing something adventurous, like climbing a mountain or something.
5) You with a baby. Preferably your niece if you have one.

There you have it. Free advice. Take it or leave it.

Tomorrow is Halloween, or should I say Chuck Candy at Children Day!


Monday, October 27, 2014

"Wait Silent" / Hilary and Kate

Post titles from here on out will be whatever music I'm listening to today.

Last night I slept nine solid hours. Got up. Had breakfast. Mom was in pain and took 7 Dilaudid. I went back to sleep, feeling defeated. Slept 3 more hours. This is pretty typical. I am hurting. I am grieving.

My birthday was last week. I'm 24. I feel suddenly much older and that much more out of place, living at home still. I know God is using every little bit of stress and anger and frustration to train me up for ministry, but Really? Do we have to go through this again? Wasn't POTS enough??

In the afternoon Mom had some more breakthrough pain and was short of breath. It really scared me at the time, but now she's talking on the phone, so some improvement there. We watched a very funny episode of Modern Family, centering around new neighbors that appear most unpleasant. I feel like grief has moved in all around. Trying to be more intentional about immersing myself in fiction or movies, give myself more opportunities for narrative, more outlets. Doing a good job leaving the house at least once a day. Today I found a beautiful journal on the clearance table for $2! That and my hot pink gel pen will provide a great outlet too.

Got a good chunk of work done today. Lots of outings coming up. Looking forward to that.

Now it's 7:45pm. Time to go back to sleep.


Friday, October 10, 2014

The Latest

It's been a while. Things have been kind of all over the place.

In January 2014 I started school as a full-time student and did that for about two weeks, until my Auntie Cheryl passed away suddenly. I dropped to part-time, and ultimately dropped the semester due to my mom's frequent ER visits at CTCA, and also due to my grieving the loss of my beloved aunt.

In the summer semester I was able to complete two courses, which is considered a full-time load-- first time in 6 years! I aced Social Psychology and U.S. History 1876-present. Yay! Meanwhile, I dog-sat and babysat a bunch, and I got the job as my church's new Youth Ministry Intern. A while later it was pointed out to me that I'm not an intern; this is my job. So I got a promotion of sorts! Now I'm the Youth Ministry Leader at Christ UMC. I love it! Tonight is Faith Frenzy Friday. Need I say more?

This fall I started as a part-time student, working part-time at the church, and also doing my nannying gig. I have since dropped school and the nannying to focus on my mom's needs. Being a caregiver is so difficult and emotional and you're grieving at the same time... props to anyone who's ever done this job. And when your loved one has memory problems, it's a whole other dimension. My mom has had some pretty major delirium in the last week due to a high fever and an infection. Sometimes my mom says stuff that makes me laugh, like the other night she told me that I'm going to marry the ambassador's son. No contest. I said I'll take it. ;-)

We've been in and out of the hospice facility, first for pain management, then for the fever/infection. Mom is now on antibiotics which are really helping. We are under hospice care at home which means Wendy, our nurse, comes to our house three times a week (M/W/F) to check on Mom and the family. Dr. Newman comes as needed too. We like her. The social worker, April, came last week. She is awesome. Such a calming presence.

I could go into detail on Mom's medication, her nephrostomy tubes/bags, and all the ongoing crises big and small that we've had over the last two or three weeks. But I really don't want to. A lot of times the medical stuff hits too close to home for me. It's depressing. Moving on.

Our church, our friends, and our neighbors have been and continue to be a HUGE support. I cannot even begin to describe how their prayers, cards, meals, flowers, and small favors have kept me going when I've been at my weakest. I love you. We love you. Thank you.

Self-care is one of those things that you just have to keep doing. It's just really, really hard to justify. Sometimes taking a shower even is a big deal. Today I was feeling like I might faint, I'm so deconditioned and so tired. So I did a couple rounds of relaxation, and that was so helpful. Then I went for a walk. Later on I'll do my breathing with the emWave system I got at the POTS Treatment Center in Dallas. I need to remember to take care of myself, especially during fall when POTSies (even former POTSies) have a tendency to have more noticeable symptoms. But overall I believe I am cured of POTS, I just have slightly bumpy days if I don't eat/sleep or if I get too stressed out... like a normal person I guess!

Wish I had something cheery to sign off with. How about that this season on Project Runway has been amazing! Fashion Week episodes are about to start. Go Amanda!!!