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
Saturday, July 31, 2010
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
Friday, July 16, 2010
Stressed Test
Woohoo, survived my much dreaded stress test. It should be called "How stressed can you get test!" The stress for me began two weeks prior, when the doctor told me to schedule the test, and I'd need to go off my medications two days before testing. I haven't been off all my meds since I was diagnosed two years ago! The thought of barely being able to walk, having blue lips and being bed ridden came merrily dancing in my head! Then I started having fears of the test itself. I began to wonder, if I pass out, will someone turn off the machine before it throws me across the room? Now mind you, I do have a bit of an imagination that tends to get carried away a bit. I kept seeing those cartoon figures (me inserted) being thrown across the room by the conveyor belt thing you walk on. Then I remembered my last test in which I had been on my meds for a week prior and was in the best physical shape a 48 year old woman could be in. At the time, yoga and exercise were a daily activity for me, so peddling a stationary bike was no problem back then. Two years later and my muscles are the consistency of wet toilet paper, weak and squishy! So this test is definately going to be a bit more challenging than the last time.
So being the control freak that I am, I begin to plan out my day for the test. I figure if I have some control somewhere, I won't freak out too much. NOT! So I call my friend Von to come with me for my test, I inform my prayer partners and bible study group to pray (I'm praying as well). I plan to wear my very cute workout outfit that never gets a work out. I realize the morning of the test that they have they're own version of workout clothes there, so I decide to wear something cool and comfortable instead.
It's the day of the test, and I'm feeling pretty yucky, but thankfully not as yucky as I thought I would. My friend picks me up and we have a nice visit before the test (I highly recommend bringing a friend, it was the best part of the day). I'm called to the back and led to a room with the treadmill and the Frankenstein machines. I'm told to strip down and put on the attractive oversized gown, and to please wear the gown with the opening in the front! Why bother wearing a gown at all. I'm now wearing the sheet with armholes with "my girls" peeking out the front, and looking at the treadmill and thinking "I'm definately not dressed appropriately for this machine!" and, "I'm truly missing my cute workout outfit and it's missing an opportunity to get its first workout since it was purchased a year ago." The technician comes in and begins attaching sticky electrobe circles on my bare chest, and I don't even know her name! She begins with an echocardiogram, and starts talking to herself, then she asks me "how long have you had mitro valve prolaps?" my answer, "mitro what?", she repeats the question and I respond with "two minutes?" she laughs and says, "oh this is your first echo then?" I respond, "no, I've had two before this, so I guess this just developed", she responds, "no you're usually born with this.". The room is silent, because my head is thinking why wasn't this found before, and what the heck is a mitro prolaps valve (found out on webmd that it's no big deal, but it sounds kind of serious when your all wired up to a bunch of machines). She finishes the echo, and then begins attaching more wires to me along with an attractive belt that the wires are attached to. The doctor comes in and asks me to step on the treadmill machine. The machine starts, and after a minute I begin to feel like I've worried for nothing. Next thing I know the doctor says "how odd... are you double jointed?" I answer "yes in a few places, but not everywhere." he asks me to do the thumb trick, whick I can do, but I have now lost balance and trip on the machine. The doctor sighs and realizes he's working with someone who can't chew gum and walk at the same time, and stops questioning me. The machine begins to tilt up and speed up, I'm a little out of breath, but I'm doing fine, then the machine slows down and my heart begins beating through my chest, the doctor mumbles, "that's an odd time for adrenaline to kick in!" and I giggle in my head (odd is how I'd sum up my symptoms). I begin to get dizzy, and inform the doctor, and he responds with "can you go just a little longer?" In my head I'm screaming NO, but unfortunately I'm just trying to stay upright and I'm seeing spots and I know I'm going to go down any second, so I finally say "no, I'm really dizzy", he says "just a little more time!", I'm ready to drop, and I whisper "stop", and I let go of the machine and he stops it, and I drop. The doctor and the technician don't seem too surprised by my behavior and they tell me I need to go to the examining table, and I'm thinking just give me a minute guys, but they carry me impatiently to the table and the technician begins doing another echo. I guess my little episode was keeping the technician from getting another picture of my heart. So sorry I got in your way! They finish the test, and the doctor mumbles about rescheduling another appointment, and tells me I'm a bit out of shape as he heads for the door. I giggle in my head, because I'm too fog headed and too shocked to speak, I'm also wondering how in the heck he expects me to get a workout when I nearly faint every time I pushed my body in the slightest bit. Unfortunately the doctor can't hear what I'm saying in my head (that might be a good thing lol), and he leaves the room. The technician tells me to get dressed and to take my time, and she leaves. I'm still dizzy and out of breath, and the examining table is beginning to look like a really good place to take a nap. I rest for a while, get dressed, take my overdue meds and head for the appointment desk. The receptionist is busy, and after several minutes she begins to reschedule my appointment, at which time, the room begins to spin, and I make a b-line for the floor before it's too late. The receptionist peaks over the counter and asks if I'm ok (and I'm thinking to myself, I'm on the floor, does it look like I'm ok, but maybe people plopping to the floor is completely normal for this paricular office) so I respond with just a bit dizzy, I'll be fine in a few minutes. She finishes making my appointment (so I guess it's normal for people to plop down on the floor here), and she hands me my appointment card and walks me to the door. As I walk out, I think to myself, this went much better than I thought it would. I had visions of passing out, and emegency rooms with sound proof rooms that I might get lost in! Any day not spent in the emergency room is a very good day to me!
Always inspired,
Michele
So being the control freak that I am, I begin to plan out my day for the test. I figure if I have some control somewhere, I won't freak out too much. NOT! So I call my friend Von to come with me for my test, I inform my prayer partners and bible study group to pray (I'm praying as well). I plan to wear my very cute workout outfit that never gets a work out. I realize the morning of the test that they have they're own version of workout clothes there, so I decide to wear something cool and comfortable instead.
It's the day of the test, and I'm feeling pretty yucky, but thankfully not as yucky as I thought I would. My friend picks me up and we have a nice visit before the test (I highly recommend bringing a friend, it was the best part of the day). I'm called to the back and led to a room with the treadmill and the Frankenstein machines. I'm told to strip down and put on the attractive oversized gown, and to please wear the gown with the opening in the front! Why bother wearing a gown at all. I'm now wearing the sheet with armholes with "my girls" peeking out the front, and looking at the treadmill and thinking "I'm definately not dressed appropriately for this machine!" and, "I'm truly missing my cute workout outfit and it's missing an opportunity to get its first workout since it was purchased a year ago." The technician comes in and begins attaching sticky electrobe circles on my bare chest, and I don't even know her name! She begins with an echocardiogram, and starts talking to herself, then she asks me "how long have you had mitro valve prolaps?" my answer, "mitro what?", she repeats the question and I respond with "two minutes?" she laughs and says, "oh this is your first echo then?" I respond, "no, I've had two before this, so I guess this just developed", she responds, "no you're usually born with this.". The room is silent, because my head is thinking why wasn't this found before, and what the heck is a mitro prolaps valve (found out on webmd that it's no big deal, but it sounds kind of serious when your all wired up to a bunch of machines). She finishes the echo, and then begins attaching more wires to me along with an attractive belt that the wires are attached to. The doctor comes in and asks me to step on the treadmill machine. The machine starts, and after a minute I begin to feel like I've worried for nothing. Next thing I know the doctor says "how odd... are you double jointed?" I answer "yes in a few places, but not everywhere." he asks me to do the thumb trick, whick I can do, but I have now lost balance and trip on the machine. The doctor sighs and realizes he's working with someone who can't chew gum and walk at the same time, and stops questioning me. The machine begins to tilt up and speed up, I'm a little out of breath, but I'm doing fine, then the machine slows down and my heart begins beating through my chest, the doctor mumbles, "that's an odd time for adrenaline to kick in!" and I giggle in my head (odd is how I'd sum up my symptoms). I begin to get dizzy, and inform the doctor, and he responds with "can you go just a little longer?" In my head I'm screaming NO, but unfortunately I'm just trying to stay upright and I'm seeing spots and I know I'm going to go down any second, so I finally say "no, I'm really dizzy", he says "just a little more time!", I'm ready to drop, and I whisper "stop", and I let go of the machine and he stops it, and I drop. The doctor and the technician don't seem too surprised by my behavior and they tell me I need to go to the examining table, and I'm thinking just give me a minute guys, but they carry me impatiently to the table and the technician begins doing another echo. I guess my little episode was keeping the technician from getting another picture of my heart. So sorry I got in your way! They finish the test, and the doctor mumbles about rescheduling another appointment, and tells me I'm a bit out of shape as he heads for the door. I giggle in my head, because I'm too fog headed and too shocked to speak, I'm also wondering how in the heck he expects me to get a workout when I nearly faint every time I pushed my body in the slightest bit. Unfortunately the doctor can't hear what I'm saying in my head (that might be a good thing lol), and he leaves the room. The technician tells me to get dressed and to take my time, and she leaves. I'm still dizzy and out of breath, and the examining table is beginning to look like a really good place to take a nap. I rest for a while, get dressed, take my overdue meds and head for the appointment desk. The receptionist is busy, and after several minutes she begins to reschedule my appointment, at which time, the room begins to spin, and I make a b-line for the floor before it's too late. The receptionist peaks over the counter and asks if I'm ok (and I'm thinking to myself, I'm on the floor, does it look like I'm ok, but maybe people plopping to the floor is completely normal for this paricular office) so I respond with just a bit dizzy, I'll be fine in a few minutes. She finishes making my appointment (so I guess it's normal for people to plop down on the floor here), and she hands me my appointment card and walks me to the door. As I walk out, I think to myself, this went much better than I thought it would. I had visions of passing out, and emegency rooms with sound proof rooms that I might get lost in! Any day not spent in the emergency room is a very good day to me!
Always inspired,
Michele
Monday, July 12, 2010
No Parking
It's days like today that I'm fully aware that God has a sense of humor, and I believe it's my purpose in life to make Him laugh! I'm beginning to believe that my life with dysautonomia is script for a new sitcom. The jist of the comedy is to see how many strange and funny situations you can put a chronically ill middle aged woman in.
It's a typical day for me, another one of many follow up appointments for my BFF (Big Fat Foot). I'm fully prepared, ice vest in ice chest, water, salty snacks and a good book to read during my typically long wait in the waiting room. I arrive at the parking lot 10 minutes early, only to find a line into the lot 50 cars long (exaggerated number, but 50 sounds much better than 12). When I finally pull into the lot there's a sign that says "Lot Full". Now how can a hospital parking lot possibly be full? My mind goes into typical "Michele" mode, I can't be late. I can never understand why I worry about being late for my doctors when they are always late for me. So I'm thinking I can park in the street somewhere, I've totally forgotten the fact that I have a handicapped parking placard, and I all want to do is make a b-line out of the lot. Unfortunately I'm behind an elderly woman who's afraid to move forward or sideways and seems to be struggling with a decision as to which direction she should go. Bingo, she makes a decision, I can see her backup lights heading straight for my front bumper! She decides to go backwards. I'm thinking as she's backing up that surely she sees me behind her, and that she won't run into me. As she gets closer I begin to worry and I take a look in my rear view mirror and notice that the car behind me is just inches from my rear bumper, and there's nowhere for me to go. Then BONK, sure enough she bumps into me! We both get out of our cars, and survey any damage, both cars are fine, but I'm experiencing an adrenaline rush and racing heart rate. I get back to my car in hopes to finally get out of that lot and into a spot somewhere not too far.
I find a parking spot two blocks away in a lot that says "City Water Building, No Parking unless you have official business". I'm thinking I'm two blocks away from my doctors office and I don't care what the sign says, I'm going to be late and this is the closest parking spot I can find. I have a handicapped parking placard, so I'll take a chance. I grab my bag and hurry to my appointment. There's a cool breeze and I'm thinking I should be fine. I walk a block and feel winded, I walk past the hospital entrance and feel dizzy. I'm only a building away, I tell myself "you can do this, you're almost there keep going". I walk about fifty steps and I'm very dizzy, everything is tilted, I can feel my heart beating through my chest and I'm short of breath. I know I can't go any further so plop myself on my butt, and place my head between my knees, I'll just sit there until I feel better. NOT! I didn't realize it at the time, but I guess I plopped myself right in front of the emergency room entrance! Now I couldn't find myself in front of the gift shop or the vending machines, NO, I end up in front of an Emergency room! Now in my head I'm not very worried about the physical state of my body, this is typical pushed myself too far, and I need to rest and I'll be fine mode of thought. But to someone looking at me in front of an emergency room door, I'm sure I looked totally different to them. A woman came to me and asked if I needed any help, I said "no" of course, but I guess that answer wasn't good enough for her. She replied you look terrible let me get you some help, I shook my head no, but she was insistent. Next thing I know there's a big burly orderly in front of me with a wheel chair trying to help me up. It's then that I realize that I'm sitting in front of an emergency room door "Oh no!". If you've read my blog on my last visit to the emergency room, you know this is the last place I want to be! In my head I'm panicking because I'd rather die than be left in some sound proof room lost for an hour, with medical personnel who know little or nothing about my disease! Now I'm still dizzy, my heart rate is 140, my head is foggy and I knew I wouldn't be able to say anything coherent for at least five more minutes. Now there are a few people standing around me, and I'm thinking this is bad. But I manage to tell the orderly that this is normal for me, please give me a few minutes. I'm left alone with this kind man who waits patiently by my side and after about 5 minutes I begin to feel a little better, my heart rate has dropped to 95. I tell the orderly thank you, and that I have dysautonomia, his response; "I've never heard of that before", I giggle and say "not many have". I slowly try to get up, and tell the orderly thank you. He asks me, "Are you sure you'll be OK?" I tell him "yes" and head for my doctors visit, because now I'm late!
By the time I get to my doctors office, I'm dizzy again with all the symptoms I just experienced in front of the emergency room. The nurse says "your late!" I shake my head in digust and try to sign myself in, but the page is blurry, the nurse shoves another paper in front of me and says you need to blah-blah-blah, I can't make out anything she has just said to me, I give her a confused look initial something she is pointing to, and plop myself into the nearest chair. I curl up, close my eyes and try to get myself back to normal. The nurse says something to me, and I don't respond and it's then that I guess she realized something is wrong. A minute later she is helping me into an examining room where they check my heart rate and blood pressure, which are both through the roof. The doctor comes in, and I remind her that these symptoms are normal and will probably get close to normal shortly. She asks what brought it on, and I explain about the long walk because of the parking situation, and she lets out a moan and explains that there is another parking lot around the corner with a shuttle service to this building. I giggle again, and she gives me a "she must be losing it" look", and gets on with my BFF issue. She can't figure out what's wrong with my BFF, and refers me back to my rheumatologist, so I'm back to square one again. The doctor has the nurse call for a shuttle, and the shuttle guy gives me a ride to my car. I explain what lot it's in, and he responds "oh no, I hope it hasn't been towed away, they're always towing cars from that lot!" I giggle again, because it figures. I get to the lot and woohoo, my car is still there, better yet, no ticket!. I thank the driver and head for home.
As I begin to ponder over my latest explerience I think maybe the humor thing might be the other way around, I'm sure God is putting me in these crazy situations to make me laugh! Who knows, maybe I'll write my own sitcom. Now for a title, Dysed and still laughing, or maybe the silly adventures of dysgirl. Hmmm I'll have to work on that.
Still inspired,
Dysgirl Michele
It's a typical day for me, another one of many follow up appointments for my BFF (Big Fat Foot). I'm fully prepared, ice vest in ice chest, water, salty snacks and a good book to read during my typically long wait in the waiting room. I arrive at the parking lot 10 minutes early, only to find a line into the lot 50 cars long (exaggerated number, but 50 sounds much better than 12). When I finally pull into the lot there's a sign that says "Lot Full". Now how can a hospital parking lot possibly be full? My mind goes into typical "Michele" mode, I can't be late. I can never understand why I worry about being late for my doctors when they are always late for me. So I'm thinking I can park in the street somewhere, I've totally forgotten the fact that I have a handicapped parking placard, and I all want to do is make a b-line out of the lot. Unfortunately I'm behind an elderly woman who's afraid to move forward or sideways and seems to be struggling with a decision as to which direction she should go. Bingo, she makes a decision, I can see her backup lights heading straight for my front bumper! She decides to go backwards. I'm thinking as she's backing up that surely she sees me behind her, and that she won't run into me. As she gets closer I begin to worry and I take a look in my rear view mirror and notice that the car behind me is just inches from my rear bumper, and there's nowhere for me to go. Then BONK, sure enough she bumps into me! We both get out of our cars, and survey any damage, both cars are fine, but I'm experiencing an adrenaline rush and racing heart rate. I get back to my car in hopes to finally get out of that lot and into a spot somewhere not too far.
I find a parking spot two blocks away in a lot that says "City Water Building, No Parking unless you have official business". I'm thinking I'm two blocks away from my doctors office and I don't care what the sign says, I'm going to be late and this is the closest parking spot I can find. I have a handicapped parking placard, so I'll take a chance. I grab my bag and hurry to my appointment. There's a cool breeze and I'm thinking I should be fine. I walk a block and feel winded, I walk past the hospital entrance and feel dizzy. I'm only a building away, I tell myself "you can do this, you're almost there keep going". I walk about fifty steps and I'm very dizzy, everything is tilted, I can feel my heart beating through my chest and I'm short of breath. I know I can't go any further so plop myself on my butt, and place my head between my knees, I'll just sit there until I feel better. NOT! I didn't realize it at the time, but I guess I plopped myself right in front of the emergency room entrance! Now I couldn't find myself in front of the gift shop or the vending machines, NO, I end up in front of an Emergency room! Now in my head I'm not very worried about the physical state of my body, this is typical pushed myself too far, and I need to rest and I'll be fine mode of thought. But to someone looking at me in front of an emergency room door, I'm sure I looked totally different to them. A woman came to me and asked if I needed any help, I said "no" of course, but I guess that answer wasn't good enough for her. She replied you look terrible let me get you some help, I shook my head no, but she was insistent. Next thing I know there's a big burly orderly in front of me with a wheel chair trying to help me up. It's then that I realize that I'm sitting in front of an emergency room door "Oh no!". If you've read my blog on my last visit to the emergency room, you know this is the last place I want to be! In my head I'm panicking because I'd rather die than be left in some sound proof room lost for an hour, with medical personnel who know little or nothing about my disease! Now I'm still dizzy, my heart rate is 140, my head is foggy and I knew I wouldn't be able to say anything coherent for at least five more minutes. Now there are a few people standing around me, and I'm thinking this is bad. But I manage to tell the orderly that this is normal for me, please give me a few minutes. I'm left alone with this kind man who waits patiently by my side and after about 5 minutes I begin to feel a little better, my heart rate has dropped to 95. I tell the orderly thank you, and that I have dysautonomia, his response; "I've never heard of that before", I giggle and say "not many have". I slowly try to get up, and tell the orderly thank you. He asks me, "Are you sure you'll be OK?" I tell him "yes" and head for my doctors visit, because now I'm late!
By the time I get to my doctors office, I'm dizzy again with all the symptoms I just experienced in front of the emergency room. The nurse says "your late!" I shake my head in digust and try to sign myself in, but the page is blurry, the nurse shoves another paper in front of me and says you need to blah-blah-blah, I can't make out anything she has just said to me, I give her a confused look initial something she is pointing to, and plop myself into the nearest chair. I curl up, close my eyes and try to get myself back to normal. The nurse says something to me, and I don't respond and it's then that I guess she realized something is wrong. A minute later she is helping me into an examining room where they check my heart rate and blood pressure, which are both through the roof. The doctor comes in, and I remind her that these symptoms are normal and will probably get close to normal shortly. She asks what brought it on, and I explain about the long walk because of the parking situation, and she lets out a moan and explains that there is another parking lot around the corner with a shuttle service to this building. I giggle again, and she gives me a "she must be losing it" look", and gets on with my BFF issue. She can't figure out what's wrong with my BFF, and refers me back to my rheumatologist, so I'm back to square one again. The doctor has the nurse call for a shuttle, and the shuttle guy gives me a ride to my car. I explain what lot it's in, and he responds "oh no, I hope it hasn't been towed away, they're always towing cars from that lot!" I giggle again, because it figures. I get to the lot and woohoo, my car is still there, better yet, no ticket!. I thank the driver and head for home.
As I begin to ponder over my latest explerience I think maybe the humor thing might be the other way around, I'm sure God is putting me in these crazy situations to make me laugh! Who knows, maybe I'll write my own sitcom. Now for a title, Dysed and still laughing, or maybe the silly adventures of dysgirl. Hmmm I'll have to work on that.
Still inspired,
Dysgirl Michele
Thursday, July 8, 2010
CyberVille to CreateVille
I had been looking forward to summer break since about the beginning of June. I wasn't in a big hurry because I had one of the most amazing groups of students ever, and I knew this would be the last time I would have only 20 students in my classroom for a very long time. But the exhaustion from the end of the year activities and requirements for testing, cums, packing up and report cards had completely exhausted me. I'm still shocked I made it through my last week of school, I was so symptomatic and should have been in bed.
I had very few plans for the first week of vacation, I knew I needed to rest, and rest I did! I stayed in bed and read a good book, I spent time on Face Book making comments and posting status's. Things were going well until a sweet friend sent me a neighbor request for a new game on Face Book. I had made a decision to quit these games several months ago. I had decided to quit for two reasons. The first was keeping up with my farm was exhausting and required me to check it every day and this commitment was beginning to feel like work. The second came after a dear friend was leaving on a business trip and asked me to tend her farm while she was away. When she asked me I giggle and in my head thought "poor thing, she's worse off than I am!". The first day I harvested her crops that were ready on her farm, tended to her animals and harvested her fruit trees. After doing hers and mine, I was fatigued and feeling a little resentful (I was working at the time and very tired). The second day I finished harvesting her crops and I tended to her animals (I stopped harvesting the fruit tree, because nothing bad happens if you don't). On the third and final day I tended her chickens and that's all, I was done. I realised then that FarmVille had become a chore and I was no longer enjoying the activity, so I quit. I never felt the desire to return, and I began spending some of that time uplifting friends and connecting more with my family.
These games are so appealing, and you can tell this type of gaming is focused on woman. The characters are cute, they have big eyes and sweet smiles. The player gets to design their avatar choosing hair color and style, eye shape and color etc. The game begins with simple tasks and gives rewards for each task completed. Often times you are rewarded with coins so that you can purchase more items for your game, and bingo, you've been hooked. Being able to get more stuff is a natural human desire. The one with the most stuff wins! Then there are the collections, another opportunity to get more stuff, unique stuff! It's so appealing.
Now take someone like me with a chronic illness, who has been forced to give up on many physical activities such as gardening, hiking, socializing and Mall shopping, and these games look even more appealing. Take FrontierVille, in this game you get to chop trees, build a town, plant and harvest crops, clobber bears, snakes, foxes and gophers, clear land and tend to the cute farm animals (I liked the geese the best). I had a cute little family (little Bella and handsome Edward)who shared my farming tasks. We were the perfect little family, we worked together with smiles on our cute little faces, there was no complaining about doing chores and we all got along without any arguments! Now add the chance to help friends on their property and you have a game that allows you to do all the things you can't do or are too dangerous to do in your own life. For example, during my last week of work my friends were packing up their rooms because their assignments in the school had been changed. I so wanted to help them, but could barely survive my normal day. I felt so useless, frustrated and angry that I couldn't be there for them. These games allow you to help your friends with very little effort, and accomplish tasks without sending our bodies into physical chaos.
Now add our daily symptoms to the mix, fatigue, nausea, head ache, brain fog, irregular heat rate and blood pressure, pooling, swelling and pain and these games are so easy to love. You can just sit there on a bad day, and with little effort at least accomplish something when you can barely keep a glass of water down and walking to the bathroom may result in passing out.
I'm very goal oriented though and at first these games satisfied that part of me, but in the end I had nothing tangible to show for my time spent. I needed something to prove that I am accomplishing something during my day. The challenge was "what could I do with my time when I'm feeling sick?". This vacation from gaming had forced me to re-evaluate what I still can do during my free time. I did allot of scrap booking before my former husband left, I had stopped because the pain of going through family pictures had become emotionally unbearable. I had put my scrap booking material in the back of my closet and hadn't touched it in four years. The pain of my past is over, and it's time to get those books out and finish what I began many years ago. Once I set up a corner in my dining room with my scrap booking materials, scrap booking will take very little effort and there will be so much to show for my time spent doing it. The second thing I re-discovered was my love for making cards. It's another craft that allows me to be creative and takes very little physical effort. To top it off, I've decided to have a little card workshop at my home. Once a month I can enjoy my past time with my friends. There's nothing better than a group of friends getting together, making cards, laughing, sharing and then enjoy a nice lunch afterwards.
There's nothing wrong with computer gaming, we all need a little time to gel out in front of the computer. I just needed a little balance, I still get on my computer several times a day when I'm home. I check on friends and post my status, but I'm balancing my time with other activities when I'm home and not feeling well. It's giving me a sense of accomplishment for how I'm spending my day.
Still inspired,
Cracked POTS
Michele
I had very few plans for the first week of vacation, I knew I needed to rest, and rest I did! I stayed in bed and read a good book, I spent time on Face Book making comments and posting status's. Things were going well until a sweet friend sent me a neighbor request for a new game on Face Book. I had made a decision to quit these games several months ago. I had decided to quit for two reasons. The first was keeping up with my farm was exhausting and required me to check it every day and this commitment was beginning to feel like work. The second came after a dear friend was leaving on a business trip and asked me to tend her farm while she was away. When she asked me I giggle and in my head thought "poor thing, she's worse off than I am!". The first day I harvested her crops that were ready on her farm, tended to her animals and harvested her fruit trees. After doing hers and mine, I was fatigued and feeling a little resentful (I was working at the time and very tired). The second day I finished harvesting her crops and I tended to her animals (I stopped harvesting the fruit tree, because nothing bad happens if you don't). On the third and final day I tended her chickens and that's all, I was done. I realised then that FarmVille had become a chore and I was no longer enjoying the activity, so I quit. I never felt the desire to return, and I began spending some of that time uplifting friends and connecting more with my family.
These games are so appealing, and you can tell this type of gaming is focused on woman. The characters are cute, they have big eyes and sweet smiles. The player gets to design their avatar choosing hair color and style, eye shape and color etc. The game begins with simple tasks and gives rewards for each task completed. Often times you are rewarded with coins so that you can purchase more items for your game, and bingo, you've been hooked. Being able to get more stuff is a natural human desire. The one with the most stuff wins! Then there are the collections, another opportunity to get more stuff, unique stuff! It's so appealing.
Now take someone like me with a chronic illness, who has been forced to give up on many physical activities such as gardening, hiking, socializing and Mall shopping, and these games look even more appealing. Take FrontierVille, in this game you get to chop trees, build a town, plant and harvest crops, clobber bears, snakes, foxes and gophers, clear land and tend to the cute farm animals (I liked the geese the best). I had a cute little family (little Bella and handsome Edward)who shared my farming tasks. We were the perfect little family, we worked together with smiles on our cute little faces, there was no complaining about doing chores and we all got along without any arguments! Now add the chance to help friends on their property and you have a game that allows you to do all the things you can't do or are too dangerous to do in your own life. For example, during my last week of work my friends were packing up their rooms because their assignments in the school had been changed. I so wanted to help them, but could barely survive my normal day. I felt so useless, frustrated and angry that I couldn't be there for them. These games allow you to help your friends with very little effort, and accomplish tasks without sending our bodies into physical chaos.
Now add our daily symptoms to the mix, fatigue, nausea, head ache, brain fog, irregular heat rate and blood pressure, pooling, swelling and pain and these games are so easy to love. You can just sit there on a bad day, and with little effort at least accomplish something when you can barely keep a glass of water down and walking to the bathroom may result in passing out.
I'm very goal oriented though and at first these games satisfied that part of me, but in the end I had nothing tangible to show for my time spent. I needed something to prove that I am accomplishing something during my day. The challenge was "what could I do with my time when I'm feeling sick?". This vacation from gaming had forced me to re-evaluate what I still can do during my free time. I did allot of scrap booking before my former husband left, I had stopped because the pain of going through family pictures had become emotionally unbearable. I had put my scrap booking material in the back of my closet and hadn't touched it in four years. The pain of my past is over, and it's time to get those books out and finish what I began many years ago. Once I set up a corner in my dining room with my scrap booking materials, scrap booking will take very little effort and there will be so much to show for my time spent doing it. The second thing I re-discovered was my love for making cards. It's another craft that allows me to be creative and takes very little physical effort. To top it off, I've decided to have a little card workshop at my home. Once a month I can enjoy my past time with my friends. There's nothing better than a group of friends getting together, making cards, laughing, sharing and then enjoy a nice lunch afterwards.
There's nothing wrong with computer gaming, we all need a little time to gel out in front of the computer. I just needed a little balance, I still get on my computer several times a day when I'm home. I check on friends and post my status, but I'm balancing my time with other activities when I'm home and not feeling well. It's giving me a sense of accomplishment for how I'm spending my day.
Still inspired,
Cracked POTS
Michele
Thursday, July 1, 2010
You Look Sick
I'm sure in teen circles the term "you look sick" would be considered a complement, but coming from my former husband, I interpret it to mean "God Michele, you look like death warmed over". To be honest, I'd prefer to be caught in a slammin'outfit, hair done and flawless make-up. Mainly because I would prefer that he left my home saying "Wow she looked good, maybe I should have never left." Now this is truly my own unrealistic fantasy within my twisted head, so please excuse my temporary delusional thinking.
Today was one of many typical POTSy days (nausea, dizziness, fatigue). So I'm in my sweatpants, old t-shirt, hair sticking out in every direction, no make-up and I'm an odd shade of green. I hear a knock on my door (I'm thinking it's probably a salesman and I'll scare them away with my green tint and a kind warning that I may puke any minute), I open the door and to my surprise it's my former husband. He takes one look at me, steps back and says "You look sick, is this one of your bad days? I nod, invite him in and we have a polite visit. As he's leaving he does tell me he's sorry that I'm feeling so bad, and heads to his truck. To give him some credit, I did get the feeling he felt badly for leaving me to deal with this illness alone. I now look at his decision to leave as a good one for both of us. I know I would be worse off if I had to deal with the stress of a one sided marriage.
How I appear to others has always held some importance to me (now I'm very average looking but enjoy trying to look my best). Having POTS has altered my thinking about appearance a bit. I still try hard to look my best, even if I feel awful. I don't know what I'd do without my liquid foundation, it can conceal just about anything! I use to get a bit upset when I was feeling very sick and people would complement me on how good I looked and that I didn't look sick at all. After someone would tell me I didn't look sick I'd have this secret internal dialogue shouting back at them, "can't you see I feel awful". I now take the sentence "you don't look sick" as a complement of the good job I'm doing to hide how awful I'm really feeling. Not looking sick takes the focus off being sick (which encompases just about every waking minute for me). It helps me focus on conversations about others and away from my illness.
I'm also learning that if someone catches me on a really bad day, and I look as sick as I feel, that that's ok too. This new comfort in appearance is extending to my obsession with having a neat and tidy house. If I'm not up to doing the dishes, and there's a stack of dishes on the counter when a friend comes over, who cares. I don't change my opinion of them if they have a few dishes on their counter, so why get all Susy home maker on myself. Life is too short to be so hard on myself.
Still inspired,
Michele
P.S. I sitll don't get why the former husband just drops by my house unannounced, and I've never once desired to go to his. He left me, so why does he keep coming back?
Today was one of many typical POTSy days (nausea, dizziness, fatigue). So I'm in my sweatpants, old t-shirt, hair sticking out in every direction, no make-up and I'm an odd shade of green. I hear a knock on my door (I'm thinking it's probably a salesman and I'll scare them away with my green tint and a kind warning that I may puke any minute), I open the door and to my surprise it's my former husband. He takes one look at me, steps back and says "You look sick, is this one of your bad days? I nod, invite him in and we have a polite visit. As he's leaving he does tell me he's sorry that I'm feeling so bad, and heads to his truck. To give him some credit, I did get the feeling he felt badly for leaving me to deal with this illness alone. I now look at his decision to leave as a good one for both of us. I know I would be worse off if I had to deal with the stress of a one sided marriage.
How I appear to others has always held some importance to me (now I'm very average looking but enjoy trying to look my best). Having POTS has altered my thinking about appearance a bit. I still try hard to look my best, even if I feel awful. I don't know what I'd do without my liquid foundation, it can conceal just about anything! I use to get a bit upset when I was feeling very sick and people would complement me on how good I looked and that I didn't look sick at all. After someone would tell me I didn't look sick I'd have this secret internal dialogue shouting back at them, "can't you see I feel awful". I now take the sentence "you don't look sick" as a complement of the good job I'm doing to hide how awful I'm really feeling. Not looking sick takes the focus off being sick (which encompases just about every waking minute for me). It helps me focus on conversations about others and away from my illness.
I'm also learning that if someone catches me on a really bad day, and I look as sick as I feel, that that's ok too. This new comfort in appearance is extending to my obsession with having a neat and tidy house. If I'm not up to doing the dishes, and there's a stack of dishes on the counter when a friend comes over, who cares. I don't change my opinion of them if they have a few dishes on their counter, so why get all Susy home maker on myself. Life is too short to be so hard on myself.
Still inspired,
Michele
P.S. I sitll don't get why the former husband just drops by my house unannounced, and I've never once desired to go to his. He left me, so why does he keep coming back?
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