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.
et
Saturday, November 29, 2014
Friday, November 28, 2014
"Zip-a-dee-doo-dah"
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.
et
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.
et
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.
et
Breathing, breathing. Trying to be patient.
et
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,
emma
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,
emma
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.
ARE YOU KIDDING ME?
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.
emma
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.
ARE YOU KIDDING ME?
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.
emma
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,
et
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,
et
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?
et
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?
et
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
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!
dance,
emma
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!
dance,
emma
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.
emma
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.
emma
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.
emma
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.
emma
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.
shine,
et
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.
shine,
et
Monday, November 3, 2014
"Shake It Off" / Taylor Swift
Three seizures three days in a row. Chest pains. No driving until further notice.
WHAT. THE. BLEEP.
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,
et
WHAT. THE. BLEEP.
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,
et
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