Started another new supplement yesterday. Crying off and on today. It's not me, it's so many shifts at once. I'm just exhausted and cranky. Change is hard, but I know it'll be worth it in the end. Just can't over-think anything or let myself get depressed. This is just part of the territory. Mood swings suck! Distracting myself with junk TV in the meantime.
Three days until I get to see my dog again!!!
et
Wednesday, October 31, 2012
Monday, October 29, 2012
Week 2 Begins
This post is kinda all over the place, like my mind. Bear with me.
The first day of week 2 is the worst for everyone. I have been ordered to not get discouraged. But it kinda stinks to have a little setback-- nausea, headaches, fatigue. This weekend I was pretty zonked out. But I was very happy after getting a massage. Go circulation! And Zimbabwe church was fun, even though I only know like 3 words in Shona. Such a fascinating language. Yay translators. But the woman pastor was out of town. Bummer.
Last Friday I was scoring an 85 on "medium" (level 2!) of breathing. Today I scored a 57. See what I mean about it being a rough day? But I got my temperature up to 97.1 at one point! Woo-hoo!
Also I'm definitely hypoglycemic. I'm supposed to mix my water with orange juice and have a snack every 2 hours so I don't crash.
I kind of want to lie in bed and watch "What Not To Wear" for the next 5 hours. But my dad's client (buyer? is that what it's called?) is really nice and taking us out to dinner. Forgot to mention that my dad flew in last night. Happy b'day to him, yesterday.
My brain is tired. I should lie down. And it's time to get a snack. That makes sense.
good-bye.
emma
The first day of week 2 is the worst for everyone. I have been ordered to not get discouraged. But it kinda stinks to have a little setback-- nausea, headaches, fatigue. This weekend I was pretty zonked out. But I was very happy after getting a massage. Go circulation! And Zimbabwe church was fun, even though I only know like 3 words in Shona. Such a fascinating language. Yay translators. But the woman pastor was out of town. Bummer.
Last Friday I was scoring an 85 on "medium" (level 2!) of breathing. Today I scored a 57. See what I mean about it being a rough day? But I got my temperature up to 97.1 at one point! Woo-hoo!
Also I'm definitely hypoglycemic. I'm supposed to mix my water with orange juice and have a snack every 2 hours so I don't crash.
I kind of want to lie in bed and watch "What Not To Wear" for the next 5 hours. But my dad's client (buyer? is that what it's called?) is really nice and taking us out to dinner. Forgot to mention that my dad flew in last night. Happy b'day to him, yesterday.
My brain is tired. I should lie down. And it's time to get a snack. That makes sense.
good-bye.
emma
Wednesday, October 24, 2012
Learning to Breathe
I'M GETTING AN 'A' IN BREATHING!
Well, kind of. A person's heart rate is closely related to their breathing. When I came into the office, my heart rate looked like the red line in the diagram below -- erratic and unstable. (Ignore all words on the graphs. Just needed the image.) A healthy person's should look like the blue line -- predictable and calm.
To train my heart rate to look like the blue line, Dr. K instructs me to use diaphragmatic breathing. I follow a specific speed for about 20 minutes each session. The first time I got really light-headed and sleepy. My brain's not used to this much oxygen! The best part is that I get to watch the graph being made on the computer as I breathe. That visual motivation is huge, as is the reward of earning "points" for the most rounded, even peaks and valleys. Today's score: 93. And I got a 97 out of 98 on oxygen levels in my blood. WHOA! (Yesterday was 81.)
Today I also started working on regulating my external body temperature, which is also greatly helped by the breathing techniques, as well as visualization. My fingers are so cold all the time. They should be about 96-97 degrees. Mine this morning were 80 degrees. But at one point during my session, they were 95.3 degrees! Amazing. I can't imagine what this might mean. No more wearing hats and gloves and slippers to bed every night? And we're only on day 2 of actual training! Pressing the "reset" button on my body is working, I think.
Dr. K has also recommended some dietary changes, including a list of supplements. Superfoods to the rescue! I've been so surprised that I haven't been nauseous at all since I've been here. We've got a 12-pack of ginger ale I haven't even opened. Cool.
Last night I church-hopped to a contemporary service for people in their 20s and 30s. Ohmygoodness, there are some nice-looking Christian boys down here! Worship was great, but I was kinda bummed out by the ego-crazy pastor. Sadface. Not to mention I am a rather blue girl in a rather red state. Not to step on anybody's toes, but can you please maybe quit hating women leaders and gay people? I coulda sworn Jesus was a revolutionary in how inclusive and loving he was. And don't we want to be like him? We are talking about the same guy, yes? Experiences like these really educate me on how people are brought up. Services like this one remind me that I am a follower of God alone. The Church is broken and imperfect because we, as humans, are broken and imperfect. So yeah. Everything with a grain of salt. Learning culture. Not taking things too seriously, just observing and loving what I learn.
But I am SO excited for -- get this -- ZIMBABWE WORSHIP at a UMC on Sunday. Ah! I am so dragging my mom to be African with me. Plus the pastor is a woman (woot!) who's traveled and sung all over the world. Yay yay yay.
It is time for dinner! I can eat! Kinda hyper! Wowee!
love-a-love,
emma
Well, kind of. A person's heart rate is closely related to their breathing. When I came into the office, my heart rate looked like the red line in the diagram below -- erratic and unstable. (Ignore all words on the graphs. Just needed the image.) A healthy person's should look like the blue line -- predictable and calm.
To train my heart rate to look like the blue line, Dr. K instructs me to use diaphragmatic breathing. I follow a specific speed for about 20 minutes each session. The first time I got really light-headed and sleepy. My brain's not used to this much oxygen! The best part is that I get to watch the graph being made on the computer as I breathe. That visual motivation is huge, as is the reward of earning "points" for the most rounded, even peaks and valleys. Today's score: 93. And I got a 97 out of 98 on oxygen levels in my blood. WHOA! (Yesterday was 81.)
Today I also started working on regulating my external body temperature, which is also greatly helped by the breathing techniques, as well as visualization. My fingers are so cold all the time. They should be about 96-97 degrees. Mine this morning were 80 degrees. But at one point during my session, they were 95.3 degrees! Amazing. I can't imagine what this might mean. No more wearing hats and gloves and slippers to bed every night? And we're only on day 2 of actual training! Pressing the "reset" button on my body is working, I think.
Dr. K has also recommended some dietary changes, including a list of supplements. Superfoods to the rescue! I've been so surprised that I haven't been nauseous at all since I've been here. We've got a 12-pack of ginger ale I haven't even opened. Cool.
Last night I church-hopped to a contemporary service for people in their 20s and 30s. Ohmygoodness, there are some nice-looking Christian boys down here! Worship was great, but I was kinda bummed out by the ego-crazy pastor. Sadface. Not to mention I am a rather blue girl in a rather red state. Not to step on anybody's toes, but can you please maybe quit hating women leaders and gay people? I coulda sworn Jesus was a revolutionary in how inclusive and loving he was. And don't we want to be like him? We are talking about the same guy, yes? Experiences like these really educate me on how people are brought up. Services like this one remind me that I am a follower of God alone. The Church is broken and imperfect because we, as humans, are broken and imperfect. So yeah. Everything with a grain of salt. Learning culture. Not taking things too seriously, just observing and loving what I learn.
But I am SO excited for -- get this -- ZIMBABWE WORSHIP at a UMC on Sunday. Ah! I am so dragging my mom to be African with me. Plus the pastor is a woman (woot!) who's traveled and sung all over the world. Yay yay yay.
It is time for dinner! I can eat! Kinda hyper! Wowee!
love-a-love,
emma
Monday, October 22, 2012
Dallas Day 1
Howdy! We made it to our hotel last night at 6:30. It was still 86 degrees out. Holy moley, this ain't Chicago! Anyway, as we're checking in, my mom casually mentions we're in town for a medical treatment. The nice woman behind the desk, Brandy, says, "Oh my word! Well let me just get you set up with our medical rate then." Bam, saved $20 a night. Score! Brandy, you're a fine girl. Thank you for making the 16 hour drive end on a high note.
Once I got in my room and lay down, I realized how completely exhausted I was from the past 48 hours. Having a seizure at my aunt and uncle's church should've been a clue. Slept like a rock and got up early for my 9 am appointment with Dr. K this morning.
Katie (the nurse) took my stats at sitting down, supine, and standing, and then hooked me up to two computers measuring my HR, outer body temperature, and something else. I don't remember much because at some point I had a weird episode of very shallow breathing. Opening my eyes was hard. Hot. Foggy. Felt like I was going to pass out. Small seizure too? Katie put ice on the back of my neck. Dr. K instructed me to breathe from my diaphragm. They gave me some vitamin powder + water to drink. Eventually felt better. Kinda felt bad that my appointment lasted an hour longer than scheduled, but these things happen. I'm sure their office is used to being flexible with us weird POTSy people.
Dr. Kyprianou seems great. She is obviously a woman of faith, which I really love in anybody, especially a doctor I'm putting my faith in. She asked extensively about my POTS history and symptoms, and then she asked what my biggest fear was. I said being very dependent on my parents and my family for a long time. She smiled and said I have no need to worry about that. (Me, inside: WOO-HOO!) Dr. K is very optimistic about her patients's improvement, but guarded about making any sweeping "everybody gets 100% better" kind of statements.
Later on we met with the other new out-of-town patients on the same 2-week rotation as me. So much for this being a teenage girl thing. A female nurse from Lousiana, maybe 30, got POTS a month ago out of nowhere, and spent 3 weeks in the hospital. A man from Nevada, about 45?, has had POTS (undiagnosed) for 4 or 5 years. We were so hungry to hear each other's stories and are determined to get better together. The Center has a support group that meets on Thursdays. I'll see these two again --and others-- then.
Dr. K's method is all about training the brain to get out of the Sympathetic (fight-or-flight) response. POTS patients' systems are stuck there! Instead, we will learn to activate the Parasympathetic response (rest-and-digest). I'll explain the exercises and machines as the week goes on.
As a special treat, I got a preview of the hydraulic(?) massage table. Just 5 minutes on it really helped my circulation! Looking forward to using it again.
We decided not to bring our wonderful dog Jelly on the trip, but other people at the hotel have their pups here! Tonight I met a Doberman named Lily and a Boxer named Champ. I looooove dogs. They are so therapeutic.
Presidential Debate Time!
hearts,
emma
Once I got in my room and lay down, I realized how completely exhausted I was from the past 48 hours. Having a seizure at my aunt and uncle's church should've been a clue. Slept like a rock and got up early for my 9 am appointment with Dr. K this morning.
Katie (the nurse) took my stats at sitting down, supine, and standing, and then hooked me up to two computers measuring my HR, outer body temperature, and something else. I don't remember much because at some point I had a weird episode of very shallow breathing. Opening my eyes was hard. Hot. Foggy. Felt like I was going to pass out. Small seizure too? Katie put ice on the back of my neck. Dr. K instructed me to breathe from my diaphragm. They gave me some vitamin powder + water to drink. Eventually felt better. Kinda felt bad that my appointment lasted an hour longer than scheduled, but these things happen. I'm sure their office is used to being flexible with us weird POTSy people.
Dr. Kyprianou seems great. She is obviously a woman of faith, which I really love in anybody, especially a doctor I'm putting my faith in. She asked extensively about my POTS history and symptoms, and then she asked what my biggest fear was. I said being very dependent on my parents and my family for a long time. She smiled and said I have no need to worry about that. (Me, inside: WOO-HOO!) Dr. K is very optimistic about her patients's improvement, but guarded about making any sweeping "everybody gets 100% better" kind of statements.
Later on we met with the other new out-of-town patients on the same 2-week rotation as me. So much for this being a teenage girl thing. A female nurse from Lousiana, maybe 30, got POTS a month ago out of nowhere, and spent 3 weeks in the hospital. A man from Nevada, about 45?, has had POTS (undiagnosed) for 4 or 5 years. We were so hungry to hear each other's stories and are determined to get better together. The Center has a support group that meets on Thursdays. I'll see these two again --and others-- then.
Dr. K's method is all about training the brain to get out of the Sympathetic (fight-or-flight) response. POTS patients' systems are stuck there! Instead, we will learn to activate the Parasympathetic response (rest-and-digest). I'll explain the exercises and machines as the week goes on.
As a special treat, I got a preview of the hydraulic(?) massage table. Just 5 minutes on it really helped my circulation! Looking forward to using it again.
We decided not to bring our wonderful dog Jelly on the trip, but other people at the hotel have their pups here! Tonight I met a Doberman named Lily and a Boxer named Champ. I looooove dogs. They are so therapeutic.
Presidential Debate Time!
hearts,
emma
Wednesday, October 17, 2012
Baby Boy Birthday Bingo
My brother and sister-in-law's baby is expected to arrive any day now. How exciting, and at the same time, depressing for me. If the kid doesn't pop in the next 5 hours (adjusted for Mountain Time), I will LOSE the family pool for guessing his birthday. No! Is it so much to ask, little buddy, to give your Aunt Em a lifetime's worth of bragging rights? Sigh. It's the least you could do. ;-)
Meanwhile, I am in crazy-woman mode getting ready for the Dallas trip. Woo-hoo! Two days to departure! My mom and I realized that we'll be gone for 17 days-- the longest either of us has been away from home (besides college). It's full-size shampoo all the way! And maybe bringing the dog. No, seriously.
I have a huge assortment of music CDs, books on CD, and comedy CDs. (Obviously we're not mp3-savvy like the rest of this century. Hey, everyone's an idiot at something.) Looking forward to the road trip and seeing some family along the way.
Yesterday was a "great" day and I was able to do a lot of laundry. Today I had to cancel my plans because I couldn't get out of bed, the rain was so tiring to me. I fell back to sleep for 3 hours and am still drowsy. It's amazing, the weather can just wipe me out! Hoping for sunny, cool travel days.
This trip is a HUGE sacrifice for my mom, who will be out of her office (but still working!) for two weeks. I promise, this is going to be the last heroic trip like this. We are coming back with answers, with a real-live action plan.
Come on, little boy! 4 hours and 45 minutes! You can do it!
love,
emma
Meanwhile, I am in crazy-woman mode getting ready for the Dallas trip. Woo-hoo! Two days to departure! My mom and I realized that we'll be gone for 17 days-- the longest either of us has been away from home (besides college). It's full-size shampoo all the way! And maybe bringing the dog. No, seriously.
I have a huge assortment of music CDs, books on CD, and comedy CDs. (Obviously we're not mp3-savvy like the rest of this century. Hey, everyone's an idiot at something.) Looking forward to the road trip and seeing some family along the way.
Yesterday was a "great" day and I was able to do a lot of laundry. Today I had to cancel my plans because I couldn't get out of bed, the rain was so tiring to me. I fell back to sleep for 3 hours and am still drowsy. It's amazing, the weather can just wipe me out! Hoping for sunny, cool travel days.
This trip is a HUGE sacrifice for my mom, who will be out of her office (but still working!) for two weeks. I promise, this is going to be the last heroic trip like this. We are coming back with answers, with a real-live action plan.
Come on, little boy! 4 hours and 45 minutes! You can do it!
love,
emma
Tuesday, October 9, 2012
T-Minus 10
My hair is falling out like crazy. I don't think I've ever seen it this bad this quickly. On the plus side, it doesn't take very long to blow-dry!
It's a pretty typical fall. Cold extremities, fatigue, shallow breathing, sometimes sensitive to light. But I'm trying really hard to leave the house once a day if I feel up to it. Right now I'm resting up... and then tackling a store in the mall!
Mom and I depart for Texas in 10 days!
wahoo,
et
It's a pretty typical fall. Cold extremities, fatigue, shallow breathing, sometimes sensitive to light. But I'm trying really hard to leave the house once a day if I feel up to it. Right now I'm resting up... and then tackling a store in the mall!
Mom and I depart for Texas in 10 days!
wahoo,
et
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