It was 109 degrees in beautiful Southern California today! I have been dreading this weather all year. I thought maybe the wonderfully cool summer was a prequel to an autumn closer to that of the autumn felt by the North Eastern US. But I was W-R-O-N-G wrong!!! I had already switched my boring summer wardrobe with my delightful winter clothes. Hello soft cashmere, leather boots and turtlenecks, good bye drab cotton t-shirts and leggings. I had my heart set for savory soups and delicious stews and roasts, enough with the fish, chicken and rabbit food!
I knew the heat was coming. One of the symptoms of POTS is temperature intolerance. I've often described the way I feel in the heat, to the scene in Harry Potter Chamber of Secrets, when Harry takes Pollyjuice Potion and his body goes through a very uncomfortable transformation. I feel like my blood is bubbling, a strange fatigue and tingling sensation takes over my limbs, my heart rate rises, I get very dizzy, my temperature rises a couple degrees and I feel very panicky. When I feel that way, I need to find a cool place and cool off immediately. If I don't I end up on the ground and my body shuts down. This is always followed by a trip to the hospital. Oxygen, an IV and a day or two in bed will usually get me back to my old self. But this is obviously something I want to avoid. Nothing like a public display in front of my students, parents and colleagues to make me look incompetent.
I'm very blessed to have an air conditioned classroom. But there are other hurdles to jump outside the classroom, and that was what I dreaded most. Usually I'm a worrier, but I'm finally learning that worrying gets me nowhere, and I need to trust that God has this all under control, even if it ends up being my worse case scenario. I'm also learning to look ahead and plan for the things that might cause me trouble. Finally I'm learning it's OK to ask for help.
One of my concerns was patriotic observance. It's a wonderful time where the whole school assembles together to pledge the flag, sing a patriotic song, make school announcements and say the school pledge. It's a very moving and special time of the school day. It usually lasts ten to fifteen minutes. On a hot day, it's one of my most difficult times. I'm very fortunate to have the support of the first grade team, who have offered to help me out if I ever need it. So I felt confident that this time of the day would be covered, and sure enough my kindergarten team mate took over my class during that time.
I was also concerned about lunch time, picking up my students after lunch means walking in the heat. It doesn't sound so difficult until you consider that walking with five year olds is and adventure in itself! The chances of at least one student falling down is very high, add a pushing or poking student to the mix, along with someone taking cuts, and a simple two minute walk turns into a stressful ten minute escapade! I asked my kindergarten team mate to give me a hand again, and she was kind enough to help. I followed lunch with indoor P.E., and my students were very well behaved!
I finished the day indoors in the wonderfully air conditioned classroom. It's time to go home, nothing dangerous there, WRONG! Walking to my car in 110 degrees can feel like a walk through the Sahara Desert without water. Then try getting into a car that has been sitting in the the hot sun all day, and it's as bad as it can get. I've had to pull over because my symptoms became too dangerous to drive with. I knew my drive was going to be tough, so I was fortunate enough that my daughter agreed to come to my rescue. She gets to my car ten minutes before I leave, and cools off the car before I get there. The only problem I had was that the longer cooler route to my car was hotter than I expected, and my ice vest was completely melted and warm by the time I got to my car.
A little preplanning along with some help from those around me, and living with POTS isn't so bad!
Inspired,
Michele
Psalm 139:17-18
How precious also are Your thoughts to me O God! If I should count them, they would outnumber the sand. When I am awake, I am still with You.
Monday, September 27, 2010
Thursday, September 23, 2010
"Normal" sick leads to coughing, barf fest and a side bar of piddle pup!
OK, so I was wrong to be excited about being "normal" sick! How could I have possibly thought that being "normal" sick wouldn't trigger my POTS symptoms. You would have thought that with the experiences of having a type 1 diabetic daughter, that I would have known better. I guess getting caught up in having some degree of a "normal" illness must have caused a short episode of brain fog.
Well the novelty of being "normal" sick wore off within 12 hours. "Normal sick" entails abnormal amounts of bodily fluid excreting from almost every part of the head that has holes, which unfortunately triggered some part of my stomach to rebel without warning the first night. There's nothing like the shock of waking up to a barf fest in the middle of the night. Then the wonderful realization that I can't get out of bed because of the extreme dizziness of POTS. For some reason my sense of humor seems to always kick in at times like these, and I had to giggle at the thought that just 12 hours ago I was actually joyful over having this "normal" illness! My body found it's payback for laughing at something I should have treated with a little more dread and respect! Well the adrenaline rush from being sick and the loss of my sleeping meds makes the evening a wash.
The next day feels like a normal sick day with the added bonus of worsening POTS symptoms from losing my POTS meds the night before. That night I head for bed with hopes and prayers to have a night that doesn't resemble the night before. My prayers are answered LOL, this night is definitely different from the night before. I wake up coughing, the kind of cough that feels like hairy little creatures are running along my air passages. The coughing gets out of control, and next thing I know I'm peeing like a puppy who's excited to see its owner, hmmm, no wonder I can relate so well to my kindergartners! So I head for the bathroom to change clothes and finish what I started. I'm all cleaned up, I head for the kitchen looking for something safe I can take to relieve my cough, when a second coughing jag begins. The room begins to spin, and a second set of clothing has just bit the dust. Now I'm really mad! There shouldn't be an ounce of fluid to create this problem 30 seconds after leaving the restroom, come on! I realize that it's just my body's sense of humor reminding me that it's in control, and until I crown it as my master, it will continue to torment and remind me that it is the boss of me! So I surrender control back to my body, and I promise never to take lightly any medical condition that crosses my path.
I know I'm not the only girl around who has "lost it", I do have friends who have confidentially shared (I promise I won't rat you out!). But I have to know, are girls the only ones with this problem, do guys suffer from this too? I'm sure I'll never get an answer to that question (who would admit to something as humbling as tinkling in your pants, oh yah, I just did lol), but then again, maybe they paid their dews during puberty! Well,it's kegel time!
Humbled and learning,
Michele
Job 2:10
Shall we indeed accept good from God and not accept adversity? In all this Job did not sin with his lips.
Lesson: All month God has blessed me with help in my room every single day! I will accept adversity in the same manner as the blessings.
Well the novelty of being "normal" sick wore off within 12 hours. "Normal sick" entails abnormal amounts of bodily fluid excreting from almost every part of the head that has holes, which unfortunately triggered some part of my stomach to rebel without warning the first night. There's nothing like the shock of waking up to a barf fest in the middle of the night. Then the wonderful realization that I can't get out of bed because of the extreme dizziness of POTS. For some reason my sense of humor seems to always kick in at times like these, and I had to giggle at the thought that just 12 hours ago I was actually joyful over having this "normal" illness! My body found it's payback for laughing at something I should have treated with a little more dread and respect! Well the adrenaline rush from being sick and the loss of my sleeping meds makes the evening a wash.
The next day feels like a normal sick day with the added bonus of worsening POTS symptoms from losing my POTS meds the night before. That night I head for bed with hopes and prayers to have a night that doesn't resemble the night before. My prayers are answered LOL, this night is definitely different from the night before. I wake up coughing, the kind of cough that feels like hairy little creatures are running along my air passages. The coughing gets out of control, and next thing I know I'm peeing like a puppy who's excited to see its owner, hmmm, no wonder I can relate so well to my kindergartners! So I head for the bathroom to change clothes and finish what I started. I'm all cleaned up, I head for the kitchen looking for something safe I can take to relieve my cough, when a second coughing jag begins. The room begins to spin, and a second set of clothing has just bit the dust. Now I'm really mad! There shouldn't be an ounce of fluid to create this problem 30 seconds after leaving the restroom, come on! I realize that it's just my body's sense of humor reminding me that it's in control, and until I crown it as my master, it will continue to torment and remind me that it is the boss of me! So I surrender control back to my body, and I promise never to take lightly any medical condition that crosses my path.
I know I'm not the only girl around who has "lost it", I do have friends who have confidentially shared (I promise I won't rat you out!). But I have to know, are girls the only ones with this problem, do guys suffer from this too? I'm sure I'll never get an answer to that question (who would admit to something as humbling as tinkling in your pants, oh yah, I just did lol), but then again, maybe they paid their dews during puberty! Well,it's kegel time!
Humbled and learning,
Michele
Job 2:10
Shall we indeed accept good from God and not accept adversity? In all this Job did not sin with his lips.
Lesson: All month God has blessed me with help in my room every single day! I will accept adversity in the same manner as the blessings.
Tuesday, September 21, 2010
Experiencing "Normal"
I woke up yesterday morning with a runny nose and a sore throat. I actually smiled at the thought of being ill with something "normal". Since I work every day with the symptoms of POTS, I figured a cold or allergies would be a breeze! The beginning of the day went pretty much as usual, with just the added nose blowing. Though it would have been much harder without the help of my teacher friend Karen and a parent volunteer. But by the end of the day my body let me know that it was done,fever and fatigue set in. I would definitely need a substitute for the next day. So I went to the office to request a sub, which on this particular day I felt like Oliver begging for some gruel. Or in my words, "Oh please, amazing, wonderful person in charge of all the critical workings of our school, would you please in all your magnificence call a sub for me". My hands quivering as I give her my sub request. I get the look, then I hand her my paperwork and scuffle out of there as quickly as possible. I go back to my room and write my sub plans, which is almost as much work as going in to work myself. Two hours later my sub plans are completed. I'm not sure how understandable they are, but hopefully the sub will make it through the day in one piece!
I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.
After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.
When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.
Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.
I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.
Recovering,
Michele
I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.
After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.
When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.
Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.
I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.
Recovering,
Michele
Tuesday, August 24, 2010
Multi purpose POTS meds, from anidepressants to erectile dysfunction
If you ask anyone with dysautonomia how they feel about medication, you'll probably get feelings that stretch on the edges of both sides of a pendulum. On the one side is the dependence on medications to help us to function, without it many would be bed ridden. Medications that keep us from fainting, barfing, insomnia and fatigue. We can't help but be thankful for the benefits they offer. On the other side of the pendulum, is the side effects of those medications, the inability for those medications to take away all the symptoms and the emotional roller coaster of trying one medication after another to find something that helps us to feel somewhere close to normal. And then when they don't work picking yourself up off the floor, dusting yourself off, put a smile back on your face, only to go through the process over and over again searching for the cure.
Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.
Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.
I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.
Always inspired,
Michele
Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.
Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.
I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.
Always inspired,
Michele
Monday, August 16, 2010
Michael Jackson, Howard Hughes and Me!
What could I possibly have in common with Michael Jackson or Howard Hughes? It's definitely not the money or fame. I can't dance (though my inner diva sometimes believes I can) or design aircraft. The commonalities may seem illusive, but they're actually reclusive. All three of us have different reasons for choosing to be separated from society, each of us has made a conscious choice to be alone.
I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.
The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.
Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!
Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.
Always inspired,
Michele the hermit
I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.
The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.
Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!
Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.
Always inspired,
Michele the hermit
Saturday, July 31, 2010
Fear Factor Tachycardia/Bradycardia
If you had asked me two years ago what tachycardia or bradycardia meant, I would have shrugged my shoulders and given you a puzzled look. Now those two words are as familiar as chocolate ice cream and cream puffs. For those of you unfamiliar with their meaning; Bradycardia is defined as a resting heart rate of under 60 beats per minute, though it is seldom symptomatic until the rate drops below 50 beat/min. It may cause cardiac arrest in some patients, because those with bradycardia may not be pumping enough oxygen to their heart. It sometimes results in fainting, shortness of breath, and if severe enough, death. Tachycardia typically refers to a heart rate that exceeds the normal range for a resting heart rate. It can be very dangerous depending on how hard the heart is working and the activity. Normal heart rate is usually 60-100 beats per minute.
I thought I'd share what goes on in my head when I experience my friends bradycardia and tachycardia (I often refer to as brady and tachy). I could be reading or watching TV, when I begin to feel a thump in my chest and a ticht squeeze in my heart, a second or two later another strong thump, it's a strong slow steady beat of my heart against my chest. I figure because I am resting I must be experiencing brachycardia, so I check my watch that has a heart rate monitor, and sure enough I have a heart rate of 54. I'm thinking, hmmm not too bad but something to pay attention to. The thumping soon gets further apart, and I'm beginning to breath a little faster, my lungs burn and I feel a bit dizzy. I check my monitor, it reads 46. I begin to worry that my heart may just stop. I'm feeling worse and my monitor says my heart rate is 39 and fear sets in and I begin to wonder if I'm going to survive this one. Next thing I know I feel an adrenaline rush, and my heart starts to pick up; 47...58...72...94...110...143...157, now I'm wondering if my heart is going to explode! My arms and legs are tingly, my heart is beating through my chest quickly, and I now wonder if I'm going to have a heart attack! In five minutes my heart rate has gone from 39 to 157, now the chest pain begins because my heart has just had a work out. Again I wonder if I should be worried, I think to myself "I always survive these radical episodes, maybe there's nothing to worry about?" But then another part of me says "What if this is the one time I shouldn't ignore it?". Those two opposing thoughts have very different consequence. If I went to the hospital every time my chest pain was practically unbearable I'd be there every day, but one of these days my heart may just decide it's had enough and ignoring it could be fatal! I know I've survived this so many times I often chastise myself for worrying, but I'll be honest, it's just plain scary!
I have so many dysautonomia friends on facebook. They are the most brave and couragous people I have ever met. They often laugh and push through the pain they live with daily. On occasion one of them will share on their post that they are experiencing extreme heart rate fluctuations and I can usually feel that twinge of fear in their post. I often fear for them as I fear for myself, will this be the one time bracycardia or tachycardia goes too far? Will my friend survive this episode? All I can do is pray for them and give it to God as I do every time I experience it for myself.
Always inspired,
Michele
I thought I'd share what goes on in my head when I experience my friends bradycardia and tachycardia (I often refer to as brady and tachy). I could be reading or watching TV, when I begin to feel a thump in my chest and a ticht squeeze in my heart, a second or two later another strong thump, it's a strong slow steady beat of my heart against my chest. I figure because I am resting I must be experiencing brachycardia, so I check my watch that has a heart rate monitor, and sure enough I have a heart rate of 54. I'm thinking, hmmm not too bad but something to pay attention to. The thumping soon gets further apart, and I'm beginning to breath a little faster, my lungs burn and I feel a bit dizzy. I check my monitor, it reads 46. I begin to worry that my heart may just stop. I'm feeling worse and my monitor says my heart rate is 39 and fear sets in and I begin to wonder if I'm going to survive this one. Next thing I know I feel an adrenaline rush, and my heart starts to pick up; 47...58...72...94...110...143...157, now I'm wondering if my heart is going to explode! My arms and legs are tingly, my heart is beating through my chest quickly, and I now wonder if I'm going to have a heart attack! In five minutes my heart rate has gone from 39 to 157, now the chest pain begins because my heart has just had a work out. Again I wonder if I should be worried, I think to myself "I always survive these radical episodes, maybe there's nothing to worry about?" But then another part of me says "What if this is the one time I shouldn't ignore it?". Those two opposing thoughts have very different consequence. If I went to the hospital every time my chest pain was practically unbearable I'd be there every day, but one of these days my heart may just decide it's had enough and ignoring it could be fatal! I know I've survived this so many times I often chastise myself for worrying, but I'll be honest, it's just plain scary!
I have so many dysautonomia friends on facebook. They are the most brave and couragous people I have ever met. They often laugh and push through the pain they live with daily. On occasion one of them will share on their post that they are experiencing extreme heart rate fluctuations and I can usually feel that twinge of fear in their post. I often fear for them as I fear for myself, will this be the one time bracycardia or tachycardia goes too far? Will my friend survive this episode? All I can do is pray for them and give it to God as I do every time I experience it for myself.
Always inspired,
Michele
Thursday, July 29, 2010
The Happiest Place on Earth!
If you you live in Southern California you might think that Disneyland is the happiest place on earth, but for the rare few like myself, that's not the case. I was kidnapped last year for my birthday, and my awesome friends thought a visit to Disneyland would be the perfect gift! The time at Disneyland with those friends was absolutely amazing, but I personally don't get the draw to the place???? I just don't get how spending long periods of time in line to see the same dolls sing "It's a Small, Small World" over and over could possibly be exciting. The pirates are still chasing woman around and around and the ghost in the "Haunted Mansion" still plops himself next to you at the end of the ride. The balloons, hats and food are still the same as they were 40 years ago when I visited there as a child. Now I could be a bit jaded because I've been there so many times, and that may be the reason it has lost its magic for me. Though I do know people who go quit often and love it there.
I'm sure many of you wouldn't be too shocked to learn that my happiest place on earth would involve some sort of shopping. The middle of July was my favorite stores annual anniversary sale, woohoo! The catalogue for the sale comes a week before the sale, so I have a full week to drool over the shorty black swade boots, the Michael Kors pencil pants and Nine West blazer with the leather patches on the elbows! I decided I would take this slowly (the sale lasts three weeks), making a few trips and pace myself would be a smart way to approach it.
My first trip would be the shoe department, I can't imagine anything lovelier than a half a football field size space filled with nothing but designer shoes on orderly displays sorted by style, sigh. I've decided to shop for boots for my first visit, and had my selections ready to show the salesman. So I walk into the shoe department and after placing my eyeballs back in their sockets, and getting my heart rate back down to a semi normal level, I show the salesman my selections, and explain that I can't do to much shopping because of a medical condition. I tell him my size, and he heads to the back, he shortly returns with a plethora of boots for me to try on. I give him an appreciative smile and try on the studded black swade shorty boots with the big buckle on the side. They fit like a glove and I place them in the purchase pile. The salesman then pulls out a pair of very cute Frye boots for me to try on (they weren't on my list, but definitely too cute to pass up). I place my foot in the boot and I can't get my foot into the boot, I loop my fingers into the pulls on the side of the boots, and I can feel the energy zapping from my body. The next thing I know I've fallen to my side panting like a fish out of water. The salesman's eyes are now the size of saucers, and he asks if I'm OK. I show him one finger hoping he knows I just need a minute, I push myself slowly back up and try to compose myself. I look around and see all the lovely shoes, and I'm back in my happy place. The salesman recommends that I try standing and push my foot in, I really like the boots and give it a try. I stand up and bend over to reach for the pulls of the boots, that's when the room starts swaying and I fall forward, right into the poor salesman. He steadies me, and I fall back onto the couch. He gives me a concerned look and I immediately get the feeling he thinks I might be more trouble than the commission he could get from the sale. I smile and give up on the very cute boots, I'm thinking if my skinny foot doesn't fit, I can only imagine trying to get my BFF to fit! I explain to the salesman that if I have to go through this much trouble trying to get boots on in the morning, I would be too exhausted to go to work. He gives me a sympathetic smile, and I suggest something with a zipper. Another pair of darling knee high boots come out of the box and I am back in my happy place! The boots fit like a glove, and I place them in the purchase pile. I'm done for the day, and hand him my ATM card and purchase the boots. I head home with a gratifying smile on my face.
Round two is a planned shopping trip with my mom and daughter, first stop is the Nordstroms shoe department of course. I'm in need of a new pair of dress shoes and my mom and daughter want to try some things on as well. We've taken my wheelchair this time because we're planing on hitting several stores in the mall. I find a cute pair of patten leather flats to buy, and as I'm waiting I see a cute pair of leopard print flats, but ignore them because I don't really have allot to wear with them. My partners in crime also find very cute shoes to purchase, and we head up to the woman's clothing department. I find 3 pairs of the Michael Kors pencil pants, and make my purchase. I am now wishing I bought those cut leopard print flats, but I'm not going to drag my family back to the shoe department again.
We head out to the mall and go directly to my favorite lingerie store, Victoria Secret. I have a coupon for free panties, and it's a pretty place to shop. My 70 year old mom has never been there, and she picks up some thongs and pasties and heads for the sales counter, telling everyone she passes what she's purchasing. I turn several shades of red, and I hold on tightly to my shopping bag they let you use to conceal your purchases, in fear that my mom will show everyone my adorable yet very private pair of lace panties! We thankfully head out the door, and finish the rest of our shopping without any more embarrassing incidents (though my mom did tell the waitress we were eating lunch at about her special purchase).
Round three, last trip to my favorite store before the sale is over. I get there a few minutes early and too anxious to wait. I decide to walk around the building looking for the mall entrance. It's farther than I planned, and by the time I was in the store my heart rate was 117 and I was out of breath and shaking! I find a couch in the shoe department and lay down. I'm sure I looked like a drug addict or alcoholic, but I'm beyond caring at this point. A kind salesman sees me (the same one that helped me when I was with my family last week). He asks if I'm OK, and I tell him I just need a minute, and he asks where's my wheelchair. I explain that I usually don't need it if I'm just gong to one store, but that I stupidly had taken a longer route to get into the store and that I'd be fine in a minute. He waits quietly and I am quickly revived by my wonderful surroundings, the shoes are calling my name and the smell of fine leather is working its magic. I explain to the salesman the shoes I'm interested in and where I saw them last, and he heads back to get my shoes. He brings back several styles for me to try on, and I'm back in my happy place with a darling pair of Calvin Klein leopard print and patten leather flats!
The happiest place on earth is now my closet. I open the door close my eyes and smell the Italian leather and imagine all the possibilities. Happiness is all a matter of perspective.
Always inspired,
Shoe Diva Michele
I'm sure many of you wouldn't be too shocked to learn that my happiest place on earth would involve some sort of shopping. The middle of July was my favorite stores annual anniversary sale, woohoo! The catalogue for the sale comes a week before the sale, so I have a full week to drool over the shorty black swade boots, the Michael Kors pencil pants and Nine West blazer with the leather patches on the elbows! I decided I would take this slowly (the sale lasts three weeks), making a few trips and pace myself would be a smart way to approach it.
My first trip would be the shoe department, I can't imagine anything lovelier than a half a football field size space filled with nothing but designer shoes on orderly displays sorted by style, sigh. I've decided to shop for boots for my first visit, and had my selections ready to show the salesman. So I walk into the shoe department and after placing my eyeballs back in their sockets, and getting my heart rate back down to a semi normal level, I show the salesman my selections, and explain that I can't do to much shopping because of a medical condition. I tell him my size, and he heads to the back, he shortly returns with a plethora of boots for me to try on. I give him an appreciative smile and try on the studded black swade shorty boots with the big buckle on the side. They fit like a glove and I place them in the purchase pile. The salesman then pulls out a pair of very cute Frye boots for me to try on (they weren't on my list, but definitely too cute to pass up). I place my foot in the boot and I can't get my foot into the boot, I loop my fingers into the pulls on the side of the boots, and I can feel the energy zapping from my body. The next thing I know I've fallen to my side panting like a fish out of water. The salesman's eyes are now the size of saucers, and he asks if I'm OK. I show him one finger hoping he knows I just need a minute, I push myself slowly back up and try to compose myself. I look around and see all the lovely shoes, and I'm back in my happy place. The salesman recommends that I try standing and push my foot in, I really like the boots and give it a try. I stand up and bend over to reach for the pulls of the boots, that's when the room starts swaying and I fall forward, right into the poor salesman. He steadies me, and I fall back onto the couch. He gives me a concerned look and I immediately get the feeling he thinks I might be more trouble than the commission he could get from the sale. I smile and give up on the very cute boots, I'm thinking if my skinny foot doesn't fit, I can only imagine trying to get my BFF to fit! I explain to the salesman that if I have to go through this much trouble trying to get boots on in the morning, I would be too exhausted to go to work. He gives me a sympathetic smile, and I suggest something with a zipper. Another pair of darling knee high boots come out of the box and I am back in my happy place! The boots fit like a glove, and I place them in the purchase pile. I'm done for the day, and hand him my ATM card and purchase the boots. I head home with a gratifying smile on my face.
Round two is a planned shopping trip with my mom and daughter, first stop is the Nordstroms shoe department of course. I'm in need of a new pair of dress shoes and my mom and daughter want to try some things on as well. We've taken my wheelchair this time because we're planing on hitting several stores in the mall. I find a cute pair of patten leather flats to buy, and as I'm waiting I see a cute pair of leopard print flats, but ignore them because I don't really have allot to wear with them. My partners in crime also find very cute shoes to purchase, and we head up to the woman's clothing department. I find 3 pairs of the Michael Kors pencil pants, and make my purchase. I am now wishing I bought those cut leopard print flats, but I'm not going to drag my family back to the shoe department again.
We head out to the mall and go directly to my favorite lingerie store, Victoria Secret. I have a coupon for free panties, and it's a pretty place to shop. My 70 year old mom has never been there, and she picks up some thongs and pasties and heads for the sales counter, telling everyone she passes what she's purchasing. I turn several shades of red, and I hold on tightly to my shopping bag they let you use to conceal your purchases, in fear that my mom will show everyone my adorable yet very private pair of lace panties! We thankfully head out the door, and finish the rest of our shopping without any more embarrassing incidents (though my mom did tell the waitress we were eating lunch at about her special purchase).
Round three, last trip to my favorite store before the sale is over. I get there a few minutes early and too anxious to wait. I decide to walk around the building looking for the mall entrance. It's farther than I planned, and by the time I was in the store my heart rate was 117 and I was out of breath and shaking! I find a couch in the shoe department and lay down. I'm sure I looked like a drug addict or alcoholic, but I'm beyond caring at this point. A kind salesman sees me (the same one that helped me when I was with my family last week). He asks if I'm OK, and I tell him I just need a minute, and he asks where's my wheelchair. I explain that I usually don't need it if I'm just gong to one store, but that I stupidly had taken a longer route to get into the store and that I'd be fine in a minute. He waits quietly and I am quickly revived by my wonderful surroundings, the shoes are calling my name and the smell of fine leather is working its magic. I explain to the salesman the shoes I'm interested in and where I saw them last, and he heads back to get my shoes. He brings back several styles for me to try on, and I'm back in my happy place with a darling pair of Calvin Klein leopard print and patten leather flats!
The happiest place on earth is now my closet. I open the door close my eyes and smell the Italian leather and imagine all the possibilities. Happiness is all a matter of perspective.
Always inspired,
Shoe Diva Michele
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