Sunday, December 28, 2014

"Fixer Upper" / Frozen Soundtrack

The anticipation hurts. Everything hurts.

A few guidelines for the upcoming weeks:
1) Don't drop by unannounced. It's rude.
2) Flowers die. Dead flowers are depressing and they smell. Please, no more flowers.
3) If you feel you must send something other than a card, send candles or tea. Candles give light. They make me think of my mom. Tea warms me up. Makes me think of my mom.

Tomorrow my sister and I are donating a bunch of my mom's clothes to a women's shelter and to Goodwill. We know her legacy will live on as women go to interviews in suits she used to wear. I pray they will know her confidence and strength.

I miss her already. I've missed her for a long time already.

I love you, Mom. I'm bringing more of our favorite books to read to you tomorrow. I know you can hear us. I know you'll always be with us.


Saturday, December 20, 2014

"Drifting" / plumb

We are very near the end. Not ready to write about it on here.

Very thankful for friends and family who show up and act on their willingness to lend a hand. It's messy stuff, grief. Special are those who follow through on good intentions.

My mom loves all of you, all of the POTSies, all of the friends we've made along the way. I pray she watches over all of us while we fight for recovery (again).


p.s. this is an excellent song

Monday, December 8, 2014

"Everywhere" / Michelle Branch

Well it's 12:30am over here. Time for my daily dose of gummy bears. But no! Today will be different! So instead of eating a crap-ton of candy, I ate a crap-ton of celery! And then some pizza. I will regret that in about five minutes.

It is very hard to fall asleep. I don't want to talk about it. I'll just make myself cry.

So instead of lying in bed all weepy and pathetic, I lie on the couch and watch Cheers on Netflix. It's so silly, but because it takes place almost entirely in a public space (the Cheers bar), I feel like I'm "out" with people. I can let myself "get away" for a few episodes in the wee hours. Cheers is open til 2am, so I'm in good company!

Saturday was a really good day, that is, good after 2pm, which is when I got up "for real." I typically get up at 5am (feed the pets, wander around the house) then again at 9am (eat breakfast, stare at the wall) and go back to sleep. Anyway, once I was awake for real, I had a lot of energy and did 4 or 5 loads of laundry, cleaned out the fridge, matched up the orphan socks, did some light cooking, and made like 12 lists of things to do when I have energy like this again.

Sunday I was very tired and sore, but very proud of all I'd done and grateful for a good day.

I feel like I should write something about my mom, but I'm tired of crying. It's just not fair.

Well, my fictitious bar is calling my name!



Friday, December 5, 2014

"Cold Feet" - Tracy Chapman

I wear two pairs of socks and a pair of slippers at all times. I have cold feet. My circulation is a joke.

Yesterday I ran an errand. It was a big deal. Then I came home and slept for three hours.

Today I took a shower. Hope to visit my mom later on tonight. Resting in between exertion. Thinking seriously about OD-ing on dumb Christmas movies. I've seen four already I think. At the end, they always kiss right when it starts snowing! Awwwww. Haha.

I want my mom at home. I don't know if that will happen or if it's even possible, but I want her here, where I can snuggle up with her all the time, not just every-other day. :-(

Hope your toes are warmer than mine.


Tuesday, December 2, 2014

"Higher Love" / Steve Winwood

Today I got dressed. It was a big deal.

Spent most of the day in my pajamas doing some serious resting or shaking uncontrollably. It was scary. My brother is the best and sat with me for over an hour. Got up the determination to visit my mom (since I hadn't seen her since Sunday night). Lasted 45 minutes before I motioned that I needed to be lying down again. But it is truly the highlight of my day to be with my mom, to walk down the hall at hospice with her and "Skippy" (our name for the wheely pole with her pump), making sure we don't forget Skippy because he's our good buddy! And we don't want the tube to yank us. We ate dinner by the fire. I want so desperately to be able-bodied. Trying to see the silver lining here. I'm forced to take care of myself and not take on too much responsibility? Sigh.

Not getting enough oxygen to my brain makes me pretty goofy. So I make up the words to 80s songs in the car!



Saturday, November 29, 2014

"When David Heard" / Eric Whitacre

Rough couple days. Chest pain. Heart palpitations. Short of breath upon very minimal exertion. Resting is not what I want to be doing right now! But I suck it up and do it anyway. Ugh.

Sometimes everything is just dumb and I want to punch POTS in the freakin' face. I haven't seen my mom in 48 hours. I am pissed. I am tired. I am weary. I am sad.

Watched good, fluffy, inconsequential television. Whatever current events are going on in the world I'm sure I'll find out about later. Two (and a half) crises in one family is about enough for me right now. My sister heads back to school tomorrow for 12 days or so to wrap up her semester. She'll be taking my car, seeing as hers is, ahem, out of service, and I can't drive anyway. SIGH.

Better days are ahead, they say. Hope they come soon.


Friday, November 28, 2014


I don't feel like writing.

We had a nice Thanksgiving. I had a couple of seizures. Haven't been keeping up with my breathing hardly at all. Frequently I forget to eat meals. Want to spend every moment singing songs with my mom and holding her hand. Trying to find some balance where I can take care of myself too.

We sang one of my mom's favorite songs, "Bless Us All," around the dinner table at hospice. We have a lot to be thankful for.


Wednesday, November 19, 2014

"Breathe" / Alexi Murdoch

Last couple days have been ok except for not sleeping well. Only one pre-seizure episode in 48 hours. Yay! But still lots of fatigue. Also my cat has an infection. Like we needed something else to worry about!

Breathing, breathing. Trying to be patient.


Monday, November 17, 2014

"Far Away" / Ingrid Michaelson

This is what my day looks like:

9am - wake up. Lightheaded. Ten minutes of temperature training/breathing. Ten minutes of lightheaded-fighting exercise. Drag self out of bed.

9:30am - drink Spark (lots of vitamins in it). Fight urge to go back to sleep.

10am - Eat breakfast even though I'm not hungry.

10:30 - 11:30am - relaxation session 1, then breathing session 1.

11:30am-12:30pm - reward myself by resting and watching Cheers.

12:30-3:30pm - Shower. Do chores. Maybe eat lunch if I remember. Usually Mom's nurse comes a few times a week during this window.

3:30-4:30pm - relaxation session 2, then breathing session 2. Give myself a sticker if I did well.

4:30-10pm - hang out with Mom. Eat superfoods. Take supplements. Maybe read a book. Try not to get discouraged if/when I have seizures.

10-10:30pm - Breathing/temperature training. Lightheadedness exercises.

10:30-11:45pm - lie in bed. Maybe fall asleep. Maybe get up and watch Cheers. Netflix is my good buddy.

Not a thrilling post, I know, but it keeps me accountable. Today I'll go out and get (or send someone out to get) a few of the supplements I didn't already have at home...including those dreaded salt crystals. Bleh!

Yesterday started out sucky (hardly slept, couldn't go to church) but it ended up being a halfway decent day. Only two brief periods of pre-seizure. It's hard to be relaxed and visualize the beach and stuff when there's so much chaos in our house. Mom is in a ton of pain. Upping the meds again.

Cheers is seriously the best show for me right now. Just light and fluffy and funny! A great ensemble cast.

everybody knows your name,

Friday, November 14, 2014

"It Sucks To Be Me" / Avenue Q (B'way)

I am not proud of the title of this post, but it's what I'm listening to today. A catchy, upbeat tune about how life is just plain unfair sometimes! More seizures today, and fatigue. Sitting up in front of the computer to Skype with my doc for 60 minutes was so taxing-- I had two seizures during the session! UGH. Not fun.

In a nutshell, Dr. K has advised me to relax, think positive, and get back to the rigorous training I did when I was in Dallas two years ago. "Act as though you are here with us," she said, emphasizing that I should be doing my training for at least 2-3 hours a day.


I mean, I'm gonna do it. I'm gonna grit my teeth and breathe for hours until I get lightheaded and then do my stupid exercises to fight the lightheadedness. I'm gonna drink the stinkin' coconut water and take the freakin' Himalayan salt tablets. I'm even going to wiggle my arms and legs -- yes, wiggle -- when I feel a seizure coming on so the blood moves around my extremities and yada yada yada. Don't get me wrong, I will do all this junk. I will conquer the beast AGAIN. But I am just really, really, truly pissed off and so super cranky that HOW COULD THIS HAVE HAPPENED AGAIN. uggghhhh!!!!

In so few words, Dr. K thinks my relapse may be due to the "traumatic events" of my mom entering hospice (and all the related stuff that surrounds it) and my (temporarily) dropping school. That makes some sense to me, but what really boosts my anxiety is the idea that any event that is "traumatic" enough could trigger POTS in me again. Not that Dr. K said that or anything, but still. I'm living it right now. Siiiighhhh.

So I might punch a pillow or cry myself to sleep tonight, but it will be while I do my STINKIN' breathing! And I will award myself sparkly stickers. Because this garbage just sucks.

I hate you, POTS. Prepare to die. AGAIN.


Thursday, November 13, 2014

"Small Rebellions" / Jars of Clay

Seizure yesterday morning. Pre-seizure most of the evening. Was able to do some chores in between.

Today was awful, terrible, no-good, etc. :( The snow brought on cognitive limitation I haven't known in a long time. Couldn't get out of bed. My brother was good enough to sit with me. Couple notable seizures in the afternoon. Overall feeling fatigued. Heart palpitations, headaches. Trying not to feel defeated.

The Skype call with my doc can't come soon enough!

Congrats to my brother who won a writing contest and $75! :-)

small rebellions,

Tuesday, November 11, 2014

"Stone's Serenade" / Trace Bundy

Yesterday I left the house for the first time in five days. And I got candy at the bank. Score.

Doing so much better today. Only a couple pre-seizure moments, no full-on seizures. Only a couple instances of chest pain. I was up around 3-5 am, which was weird, but not too problematic.

Also a crazy burst of energy-- purging my room of clothes that don't fit/ that I don't need/ that I don't have space for. My room is so clean now! And Goodwill will be so happy to see me!

Trying to pace myself but feeling very hopeful? Please? Yes?


Sunday, November 9, 2014

"Heaven When We're Home" / The Wailin' Jennys

My post from last night somehow didn't get posted til today.

Today (Sunday) mostly sucked. I didn't sleep much. Had three pseudo-seizures during the day. Didn't make it to church. Buh. Other POTSie symptoms showing up, like feet turning darker (blood pooling) when I stand in the shower, and severe bloating.

Mom's had a handful of episodes of breakthrough pain. Ugghhh.

Enough! Enough! We've had about as much as we can handle! If Aunt Lauren wasn't here half the week and Jimmy didn't have such a flexible schedule, I can't even imagine how we'd manage. We're just barely getting by as it is, and now with me being so spastic and not being able to drive... UGH! It sucks! hmph.

Music/movie/TV/book recommendations always welcome. Hugs always needed.

"When we find what we're lookin' for, we'll drop these bags and search no more"

<3 p="">et

"The Dance" / Charlotte Martin

In sum, today (Saturday) was so much better than yesterday! Chalking it up to the weather mostly, and the fact that I slept a long time last night. I even did a load of laundry. Huzzah! Only a couple of minor seizure episodes.

Hoping to at least show up at church tomorrow, even if I can't properly lead or contribute to youth lessons.

Started watching an interesting BBC series my aunt had recommended. It's called "Call the Midwife" and it's set in 1957 East End, London. So interesting! Chummy is by far the best character.

I have a Skype appointment set for Friday at 3pm. It's been two years since I've seen Dr. K at the POTS Treatment Center in Dallas. I'd rather not have to travel down there again if I can help it!


Friday, November 7, 2014

"Ash and Ember" / Augustana

I am tired. I'll keep this short.

Mom (and Dad and Jimmy) just got home from the hospital a couple hours ago. Mom's scan showed no other blood clots than the main one, in her left pelvis. They gave her bloodthinners and a new compression stocking. We are all in agreement that hospitals are not fun places to be.

As much as I wanted to visit my mom, it sure was a good thing I stayed home with a couple of kind, generous church friends taking shifts with me. In a four-hour period, I had four brief (2-3 minute) pseudo-seizures. Four! And then another one later on. At times it is hard for me to stand unsupported. I am lying down a lot. Know I need to get back in shape; the deconditioning is dangerous. Tomorrow I will start tilt-training once again.

I'm not happy about it, but at this point I am prepared to miss my church activities this weekend in order to focus on my health.

It's hard work, in more ways than one. God give me the grace to accept the good and bad that gets thrown my way.


Thursday, November 6, 2014

"Cleveland" / Rachel Ries

Wednesday morning: very confused and out of it, slurring my words a little, not able to focus long. Had a couple of teensy seizure moments over the course of the day.

Today: had another seizure during a church meeting at 10:45am. As much as I want to believe this is just a little bump in the road, I'm seriously worried if I will be able to continue my duties as youth leader.

Doing what I know to do. Rest and all the rest.

Also my mom is in the hospital with a blood clot.

Prayers, please.


Tuesday, November 4, 2014

"Shine" / Collective Soul

Had another little seizure. Things are getting fuzzy and foggy. I'm losing focus. Energy. Trains of thought. This morning I was so angry and now...I don't have the energy to be angry. Saving up energy to take a shower.

Started watching a show on Netflix called "The Paradise" -- similar to Downton Abbey, but about a high-end department store. It was good for like three episodes, until Miss Grendenning was all like, "I love Mr. Moray! I will love him forever!" Gag me with a spoon. Went over the edge on soap opera. Plus you know Moray is going to end up with Denise. Buh. Time to find another show. Suggestions? Since I'm not allowed to drive, the last two days have been Couch Potato Madness.

Dumb life. Dumb, dumb, dumb.

Eating pickles and anything with tons of salt. Breathing. Drinking tons of water. Trying to keep sitting up. Need to go rest now.


Monday, November 3, 2014

"Shake It Off" / Taylor Swift

Three seizures three days in a row. Chest pains. No driving until further notice.


Big setback. Caught me by surprise. I am so bummed out right now.

Mom's hospital bed was brought in today. Hope it helps her get a better night's sleep and helps drain her bags more effectively.

I'm just, I can't, I've just had about enough right now. Trying to see the humor in it, like singing "Shake It Off" while my legs are convulsing during a ten-minute pseudo-seizure. But really this totally sucks. Doing my breathing. Getting back in the habit of taking care of myself. UGH.

shake it off,

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!!!