I had another bazaar compression stocking morning. Getting those things on cracks me up and then my laughing just zaps more energy. I've been wearing the knee high stockings daily and have gotten the hang of putting those things on with very little effort. Yesterday morning I decided to wear a dress, so waist high stockings were a must.
So I've done all needed preparation for getting on these insanely difficult stockings. They're inside out as my sales lady instructed. I'm in the center of my bed to buffer any falling over. I've had my breakfast and my coffee to provide much needed energy. I've laid them out flat and straight, stocking toes facing my toes so that they don't get twisted up while putting them on. And finally I've done very little energy zapping activities in the last thirty minutes to ensure that I'm completely energized for this what looks like simple task.
So I've squeezed my rather slender legs in what feels like the casing of an Oscar Mayer Wiener. While doing so I've experienced the typical fall overs during the struggle. I'm also giggling to the point of tears and I'm exhausted. I definitely used up all my spoons on this simple act. I think next time I plan on putting these stockings on I'll make sure that I'm supplied with some extra energy. Maybe I can use my phone charger and suck on the end of the power cord or maybe an IV infused with a Monster drink would do the trick. There's got to be a better way of doing this. And before you inform me of the wonderful handy dandy gadgets out there for putting on my energy zapping hose, I know, I know they're out there. I'm just technically challenged. I still don't know how to use my tv remote or the space saving storage bags that attach to my vacuum cleaner. So I'm not adding one more divice that will get stuffed in my cupboard collecting dust.
Who would have ever thought putting on hose could make me laugh so hard (though it could be hysteria). Thanks POTS for another laugh!
Inspired to laugh,
Michele
Ecclesiastes 3:1-4
1 There is an appointed time for everything. And there is a time for every event under heaven.-
2 A time to give birth, and a time to die;
A time to plant, and a time to uproot what is planted.
3 A time to kill, and a time to heal;
A time to tear down and a time to build up.
4 A time to weep and a time to laugh;
A time to mourn, and a time to dance.
I like to try to keep my time equally balanced.
Though I do hope the whole killing thing is about killing bugs and animals for food. Because if not, I have not found a time for that yet!
Wednesday, March 9, 2011
Saturday, March 5, 2011
Magic Eight Ball
Last night I decided to step out into the wild side a bit and take a chance at an evening out with friends and colleagues. One of my favorite teacher friends was having a jewelry party and I was craving for some form of a "normal" social life. She was kind enough to find some understanding colleagues to give me a ride to her house, and I couldn't wait to actually be doing something "normal" for a change. As the night drew closer, I was beginning to listen to those shouts of doubt that were screaming in the back of my head "What if your body can't handle it?" and "Please don't let me crash in front of these people." I decided to ignore those pesty voices in my head not worry about what might or could happen.
On the night of the party my body seemed to be pretty cooperative, but my brain was on brain fog mode. I couldn't seem to compose a single sentence without a pause... or an "um" or "uh" in the middle. I seemed to be a little more self conscious of my inability to make intellectual conversation with these ladies from the world of academia. I know that these ladies don't have a mean bone in their bodies, but my past experience with a mean judgemental teacher I worked with several years ago always seems to creep into the shadows of my thoughts. As I was sitting there becoming more frustrated with myself I began to wish for a remedy to my problem. Poof, I discover the solution! I need to switch out my brain with a Magic 8 Ball. If someone asks me a question I could just tilt my head to the side and the little triangle answer would pop up on a glass panel on my forehead. Here's how a conversation might go.
Jane: "Michele, do you think the union protests in Wisconsin will be successful?"
Michele: Head tilt "As I see it yes."
Jane: "Do you think our district will be sending out allot of pink slips this month?"
Michele: Head tilt "Outlook not so good."
Jane: "Are you expecting to get a pink slip?"
Michele: "My sources say no."
Conversations would be a whole lot easier with a Magic 8 Ball in my head. Even with my many brain fog moments, I had a great time! Nothing like great friends, great food and some really beautiful jewelry to fill an evening. It was nice to get out and have a "normal" evening out. I'll have to do it again real soon,
"Outlook good!",
Michele
James 1:19
This you know, my beloved brethren. But let every one be quick to hear, slow to speak and slow to anger.
On the night of the party my body seemed to be pretty cooperative, but my brain was on brain fog mode. I couldn't seem to compose a single sentence without a pause... or an "um" or "uh" in the middle. I seemed to be a little more self conscious of my inability to make intellectual conversation with these ladies from the world of academia. I know that these ladies don't have a mean bone in their bodies, but my past experience with a mean judgemental teacher I worked with several years ago always seems to creep into the shadows of my thoughts. As I was sitting there becoming more frustrated with myself I began to wish for a remedy to my problem. Poof, I discover the solution! I need to switch out my brain with a Magic 8 Ball. If someone asks me a question I could just tilt my head to the side and the little triangle answer would pop up on a glass panel on my forehead. Here's how a conversation might go.
Jane: "Michele, do you think the union protests in Wisconsin will be successful?"
Michele: Head tilt "As I see it yes."
Jane: "Do you think our district will be sending out allot of pink slips this month?"
Michele: Head tilt "Outlook not so good."
Jane: "Are you expecting to get a pink slip?"
Michele: "My sources say no."
Conversations would be a whole lot easier with a Magic 8 Ball in my head. Even with my many brain fog moments, I had a great time! Nothing like great friends, great food and some really beautiful jewelry to fill an evening. It was nice to get out and have a "normal" evening out. I'll have to do it again real soon,
"Outlook good!",
Michele
James 1:19
This you know, my beloved brethren. But let every one be quick to hear, slow to speak and slow to anger.
Monday, February 14, 2011
Rose Colored Glasses
My former husband use to tell me I needed to take off my rose colored glasses and take a good look at the real world I'm living in. I'm thankful at the time that I liked how I saw the world and that he only saw the world in black and gray. I realized I wasn't the one with the problem and the sad thing is that his negativity was the real issue. Now don't get me wrong I am not stumbling through life pretending things are not the way they are! Believe me when I say that I've felt the pain life has dished out for me. I just choose not to relish in it too long. Rose is such a joyful color, why not paint my world with joy instead of darkness.
Growing up I had a difficult childhood. But when the pain of living in a dark scary world was getting me down, I always looked for the beauty in the world around me to bring joy in my life. It didn't take much; an Autumn leaf, a bird perched on a tree or my favorite iris bush that seemed to bloom all year around just for me on my way to school. I am so glad I picked up this coping skill at such an early age because it has definitely made a difference in how I deal with dysautonomia.
They say laughter is the best medicine, I'm convinced it's true in my case. I wake up in the morning giggling at the decision I need to make first thing as I sit up in bed. Do I drink the 16 oz glass of water my parched body requires to start my day or run to the restroom before I have an accident. The giggling usually doesn't help the situation. After I drink the ginormous glass of water, I make a run to the toilet only to find myself running into walls because of the lack of blood to my head. So I sing to myself "What do you do with a drunken sailor". I begin to giggle and almost lose it at the door. I head for the kitchen to make breakfast that I force myself to eat. The nausea is overwhelming every morning, but I have a song for that too, "It's not easy being green!" with a visual of Kermit the frog singing to me. I have to admit that the extreme fatigue and body aches are a bit more of a challenge to laugh at or see a positive side to, but I do imagine I must look quite odd constantly moving around and shaking my limbs to keep my blood flowing to my extremities. Sometimes I imagine myself looking like Lerch form the Adam's Family with my arms bent at the elbows and my hands in the air. I often think I'm in an "I Love Lucy" episode as I try putting on my compression stockings and fall over every time. My hands and feet are a rainbow of color and pattern and I do still marvel at their uniqueness. And if all else fails I can still look out my window because there's always something amazing to see out there to cheer me up.
I'm not saying I'm always laughing and cheerful, I have those days that are harder than others. I just choose to be a glass half full kind of girl. The world is a much nicer place when everything around you is pink!
Inspired,
Michele
Romans 15:13
Now may the God of hope fill you with all joy and peace in believing that you may abound in hope by the power of the Holy Spirit.
Growing up I had a difficult childhood. But when the pain of living in a dark scary world was getting me down, I always looked for the beauty in the world around me to bring joy in my life. It didn't take much; an Autumn leaf, a bird perched on a tree or my favorite iris bush that seemed to bloom all year around just for me on my way to school. I am so glad I picked up this coping skill at such an early age because it has definitely made a difference in how I deal with dysautonomia.
They say laughter is the best medicine, I'm convinced it's true in my case. I wake up in the morning giggling at the decision I need to make first thing as I sit up in bed. Do I drink the 16 oz glass of water my parched body requires to start my day or run to the restroom before I have an accident. The giggling usually doesn't help the situation. After I drink the ginormous glass of water, I make a run to the toilet only to find myself running into walls because of the lack of blood to my head. So I sing to myself "What do you do with a drunken sailor". I begin to giggle and almost lose it at the door. I head for the kitchen to make breakfast that I force myself to eat. The nausea is overwhelming every morning, but I have a song for that too, "It's not easy being green!" with a visual of Kermit the frog singing to me. I have to admit that the extreme fatigue and body aches are a bit more of a challenge to laugh at or see a positive side to, but I do imagine I must look quite odd constantly moving around and shaking my limbs to keep my blood flowing to my extremities. Sometimes I imagine myself looking like Lerch form the Adam's Family with my arms bent at the elbows and my hands in the air. I often think I'm in an "I Love Lucy" episode as I try putting on my compression stockings and fall over every time. My hands and feet are a rainbow of color and pattern and I do still marvel at their uniqueness. And if all else fails I can still look out my window because there's always something amazing to see out there to cheer me up.
I'm not saying I'm always laughing and cheerful, I have those days that are harder than others. I just choose to be a glass half full kind of girl. The world is a much nicer place when everything around you is pink!
Inspired,
Michele
Romans 15:13
Now may the God of hope fill you with all joy and peace in believing that you may abound in hope by the power of the Holy Spirit.
Friday, January 28, 2011
Ode to Compression Stockings
Oh how I love thee compression stockings.
I compare thy hug to a size 8 woman trying to squeeze into a size 2 jean.
Your tight embrace compels my feet to do an Irish jig,
and your firm squeeze sends a burst of energy that gets me through my day!
I will loveth thee all the days of my life!
I was told over a year ago to purchase compression stockings to help with my pooling and circulation issues. The first time the doctor mentioned it to me waves of horror sent shivers down my spine with the thought of wearing something so ugly and lacking of style. By the second visit and second recommendation to purchase the stockings I thought I should be a good patient and give them a try. I went on line to check them out and my jaw hit the floor at the price of one pair of stockings. I could buy a cute pair of fine Italian leather shoes for the price of one pair of UGLY stockings! I'm NOT going to spend that much money on a pair of socks! So being the cheapskate that I am I went to my local drugstore and bought a pair of cheap ones that cost less than $10.00, and headed for my favorite shoe salesman at Nordtroms for a nice pair of peep toed flats. I put on the cheap compression stockings and I couldn't tell the difference between them and my normal socks except for the fact that the compression stockings cut off my circulation below the knees.
One year later and I'm with a new neuro and he also recommends the compression stockings. I cheerfully tell him they don't work and we move on to other more important issues. Three months later and the dreaded subject of compression stockings is brought up again! I'm beginning to wonder if maybe there might actually be something to these compression stockings and sheepishly bring up the fact that the stockings I tried were very cheap. I told the doctor that compression stockings are very expensive and if he might write me a prescription for them, and he agrees! I'm still not completely sold on the stockings idea and hold on to the prescription. A week later my legs are in more pain than I've ever experienced. The pain and discomfort is so bad that I'm beginning to wonder if I can continue to work with this much pain. I finally decide the compression stockings may be my last option. My former husband may have been right about one thing, I am a stubborn German!
With prescription in hand I head to my local medical supply store and hand them my prescription. I'm told to have a seat and someone would be with me shortly for a fitting. A FITTING! I look at the guy and say "Excuse me, I'm just here for compression stockings, not crutches or anything like that!" He smiles and says I need to be fitted which is normal procedure for compression stockings." I sit down and wait, and within minutes a lady with a tape measure begins measuring various parts of my legs. She hands me one pair of thigh high stockings in my desired color, and she asks me if I know how to put on compression stockings? I give her a "are you kidding me look" and she takes that as a "no" and begins giving me a "lesson" on putting on compression stockings. In my head I'm thinking sock are socks, I should be able to handle it. But I have nothing better to do with my time so I actually take note of the key points to her lesson. I'm thinking one pair of stockings are not going to get me through a week of working. I mention my concern and she directs me to the calf high section and I chose a pair of navy socks to wear with my jeans. I'm thinking the insurance company will pay for the thigh high and I'll pay for the other pair. We head for the cash register and she announce the total, almost a hundred dollars! I mention the prescription and she explains that the insurance companies will not pay for compression stockings because they are considered cosmetic. I explain that I have orthostatic intolerance and that it's definitely not for cosmetic reasons. She says sorry but they have NEVER been covered by the insurance companies. I'm thinking "seriously, who would want to purchase a pair of these ugly things for appearances sake!". I end up charging them and head out the door.
The next morning I take my lovely knee highs out of the box. I attempt to put them on and soon find that the traditional way is not going to work. It's 6 am and my brain is still on defog mode. What did the lady say to do....tick.....tick.....tick, hmmm, something about turning them inside out, not sure why. I turn them inside out and can't get them over my toes and up my foot. I keep trying and end up falling over backwards. As I lay there I'm thankful I attempted this on the bed. But now I've got to get myself up which is never an easy task for me. I'm back in my sitting position and make another attempt to get these "special" socks on. After 5 minutes I get the first sock on, woohoo! Now I'm tired and I still have one more sock to put on. As I hold up my second sock my arms are shaking but the experience with the first sock makes it a bit easier to get the second one on. As I sat there on my bed recouping from putting on my stockings I'm thinking the time and energy spent putting on these stockings are probably not going to be worth any results I may get from these things and that I probably just waisted a chunk of money.
I'm in the parking lot at work and the walk to my classroom is probably the most difficult walk of the day, so off I head for my classroom. I notice the difference immediately. I feel like I have more of a spring to my step, hmmm this is good. I get through my first hour of teaching and I feel pretty good as far as my legs are concerned. By the end of the day I'm feeling not an ounce of pain or fatigue that usually plague me at that time and I'm ecstatic! I head for the parking lot and notice I still have a glint of the spring in my step from earlier in the morning and I'm smiling from ear to ear.
I get home and go on line and order four more pair of stockings and find out that there's quite a discount on line and in larger quantity purchases. I love these things so much that I begin to envision how I'm going to incorporate my stockings into my summer wardrobe. Maybe I could begin a fashion trend of wearing compression stockings with shorts and skirts! The next days unseasonably warm weather put a quick halt to wearing compression stockings in the heat. My feet felt like they were doing hard labor in a sweat shop in those things.
If you've been putting off purchasing compression stockings for vanity reasons or costs. I will tell you that they are worth more than all my designer shoes in my closet. I'm kind of like that guy in the DR Seuss book Green Eggs and Ham I will not eat green eggs and Ham, I will not try them Sam I am or in my case I will not try compression stockings, I will not wear them doc I am! After my first day,
I will wear them on a train and on a boat and in the rain!
I will wear them in a tree, they are so go, so good you see!
I will wear them here and there, I will wear them anywhere!
Inspired,
Michele
Proverbs 1:5 A wise man will hear and increase in learning. And a man of understanding will acquire wise counsel.
I compare thy hug to a size 8 woman trying to squeeze into a size 2 jean.
Your tight embrace compels my feet to do an Irish jig,
and your firm squeeze sends a burst of energy that gets me through my day!
I will loveth thee all the days of my life!
I was told over a year ago to purchase compression stockings to help with my pooling and circulation issues. The first time the doctor mentioned it to me waves of horror sent shivers down my spine with the thought of wearing something so ugly and lacking of style. By the second visit and second recommendation to purchase the stockings I thought I should be a good patient and give them a try. I went on line to check them out and my jaw hit the floor at the price of one pair of stockings. I could buy a cute pair of fine Italian leather shoes for the price of one pair of UGLY stockings! I'm NOT going to spend that much money on a pair of socks! So being the cheapskate that I am I went to my local drugstore and bought a pair of cheap ones that cost less than $10.00, and headed for my favorite shoe salesman at Nordtroms for a nice pair of peep toed flats. I put on the cheap compression stockings and I couldn't tell the difference between them and my normal socks except for the fact that the compression stockings cut off my circulation below the knees.
One year later and I'm with a new neuro and he also recommends the compression stockings. I cheerfully tell him they don't work and we move on to other more important issues. Three months later and the dreaded subject of compression stockings is brought up again! I'm beginning to wonder if maybe there might actually be something to these compression stockings and sheepishly bring up the fact that the stockings I tried were very cheap. I told the doctor that compression stockings are very expensive and if he might write me a prescription for them, and he agrees! I'm still not completely sold on the stockings idea and hold on to the prescription. A week later my legs are in more pain than I've ever experienced. The pain and discomfort is so bad that I'm beginning to wonder if I can continue to work with this much pain. I finally decide the compression stockings may be my last option. My former husband may have been right about one thing, I am a stubborn German!
With prescription in hand I head to my local medical supply store and hand them my prescription. I'm told to have a seat and someone would be with me shortly for a fitting. A FITTING! I look at the guy and say "Excuse me, I'm just here for compression stockings, not crutches or anything like that!" He smiles and says I need to be fitted which is normal procedure for compression stockings." I sit down and wait, and within minutes a lady with a tape measure begins measuring various parts of my legs. She hands me one pair of thigh high stockings in my desired color, and she asks me if I know how to put on compression stockings? I give her a "are you kidding me look" and she takes that as a "no" and begins giving me a "lesson" on putting on compression stockings. In my head I'm thinking sock are socks, I should be able to handle it. But I have nothing better to do with my time so I actually take note of the key points to her lesson. I'm thinking one pair of stockings are not going to get me through a week of working. I mention my concern and she directs me to the calf high section and I chose a pair of navy socks to wear with my jeans. I'm thinking the insurance company will pay for the thigh high and I'll pay for the other pair. We head for the cash register and she announce the total, almost a hundred dollars! I mention the prescription and she explains that the insurance companies will not pay for compression stockings because they are considered cosmetic. I explain that I have orthostatic intolerance and that it's definitely not for cosmetic reasons. She says sorry but they have NEVER been covered by the insurance companies. I'm thinking "seriously, who would want to purchase a pair of these ugly things for appearances sake!". I end up charging them and head out the door.
The next morning I take my lovely knee highs out of the box. I attempt to put them on and soon find that the traditional way is not going to work. It's 6 am and my brain is still on defog mode. What did the lady say to do....tick.....tick.....tick, hmmm, something about turning them inside out, not sure why. I turn them inside out and can't get them over my toes and up my foot. I keep trying and end up falling over backwards. As I lay there I'm thankful I attempted this on the bed. But now I've got to get myself up which is never an easy task for me. I'm back in my sitting position and make another attempt to get these "special" socks on. After 5 minutes I get the first sock on, woohoo! Now I'm tired and I still have one more sock to put on. As I hold up my second sock my arms are shaking but the experience with the first sock makes it a bit easier to get the second one on. As I sat there on my bed recouping from putting on my stockings I'm thinking the time and energy spent putting on these stockings are probably not going to be worth any results I may get from these things and that I probably just waisted a chunk of money.
I'm in the parking lot at work and the walk to my classroom is probably the most difficult walk of the day, so off I head for my classroom. I notice the difference immediately. I feel like I have more of a spring to my step, hmmm this is good. I get through my first hour of teaching and I feel pretty good as far as my legs are concerned. By the end of the day I'm feeling not an ounce of pain or fatigue that usually plague me at that time and I'm ecstatic! I head for the parking lot and notice I still have a glint of the spring in my step from earlier in the morning and I'm smiling from ear to ear.
I get home and go on line and order four more pair of stockings and find out that there's quite a discount on line and in larger quantity purchases. I love these things so much that I begin to envision how I'm going to incorporate my stockings into my summer wardrobe. Maybe I could begin a fashion trend of wearing compression stockings with shorts and skirts! The next days unseasonably warm weather put a quick halt to wearing compression stockings in the heat. My feet felt like they were doing hard labor in a sweat shop in those things.
If you've been putting off purchasing compression stockings for vanity reasons or costs. I will tell you that they are worth more than all my designer shoes in my closet. I'm kind of like that guy in the DR Seuss book Green Eggs and Ham I will not eat green eggs and Ham, I will not try them Sam I am or in my case I will not try compression stockings, I will not wear them doc I am! After my first day,
I will wear them on a train and on a boat and in the rain!
I will wear them in a tree, they are so go, so good you see!
I will wear them here and there, I will wear them anywhere!
Inspired,
Michele
Proverbs 1:5 A wise man will hear and increase in learning. And a man of understanding will acquire wise counsel.
Sunday, January 23, 2011
Out of Body Experience
Today I so wanted to have an "out of body" experience! For the first time I really wanted to be out of my body and into a body that isn't so messed up. I've been frustrated before, but never fed up.
Today at church my body was acting out like one of my 5 year olds screaming "I DON'T WANT TO SIT IN CHURCH!". And there was nothing I could do to satisfy it's sick need to make me as miserable as possible. It was a battle of wills, POTS (stamping and kicking) against Michele (trying to talk reason with it). POTS wanted me to be in pain and miserable, and I wanted to do everything I could to relieve my body of the symptoms I was facing.
My body seemed to be having more trouble with circulation than usual. While sitting my blood was pooling at my feet and buttocks(the word "pooling" seems to bring on visions of a swimming pool filled with blood, ewww), and not getting blood flow to my hands and head. The pooling made me ache in my hips and legs, and the lack of blood flow was causing my lips, tongue and nose to tingle and get numb. The pain would become so bad that it made me nauseous. The sermon was really good and my body had become a distraction. To remedy this I kept changing positions; crossing my legs, putting my feet up on the pew, shaking my feet and hands out, and moving around like I had ants in my pants. I'm sure I was a bit distracting to anyone behind me that is plagued with ADD. I'm sure I looked like one of my kinders rolling around on the rug. I finally had had enough and went out to the vestibule (the back of the church before you go into the main part of the church). I took a salt tablet and sat out the sermon next to the drinking fountain deemed necessary because the salt tablet leaves me feeling as parched as the Sahara desert. The ushers kept eyeing me compassionately waiting for something to happen since I've been on the prayer chain more often than I'd care to be. I went back into the main church when the music started up. While I was singing my body went through cycles of feeling fine to fatigue, then numbness and pain which would make me nauseated. I would stop singing, shake my limbs and go through the cycles all over again. I finally get why boxers are always shaking themselves out during their breaks, it's to shake up the blood into those parts of the body that have been hurt by their opponent. I can hear the Rocky anthem playing in the background of my head as I replace myself with the buff Sylvester Stallone (not quite as attractive vision). While all this was happening I kept telling myself this is the body God gave me, I need to stop complaining and accept and rejoice in what I have. Finally the POTS took over and I became so frustrated I shook my whole body out and wanted to growl out loud in the middle of church. "I've had enough of this stupid body God, take it I'm fed up with it! I want a new and improved one please." Is this what God means to suffer in Christ? I don't think so, I'm sure God wasn't too pleased with the fact that I hardly heard a word His servant our pastor was saying.
So many things about church are such a challenge for me, sitting still for over an hour, standing in one place to sing hymns and praise music, singing and running out of air and those dreaded stairs to get to the group I help lead. Do I just let POTS win and give up and stay home? On the other hand church is a place of "us", a place to worship together, unite in prayer and share our burdens so we don't ever have to walk in our pain and our joys alone. My faith in Christ and being close to other believers renews my hope that I'm not going through this alone and that there IS a purpose in this suffering. God does and has revealed His purpose in this many times, but some times His purpose is harder to see when I'm in the middle of the pain. Today I made up those stairs with less trouble than I expected. I'm sure there was someone praying for me when I wasn't able to do it myself. Hence the reason I continue to push through this every week.
Inspired,
Michele
Ecclesiastes 4:9-12
Two are better than one because they have a good return for their labor. For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up. Furthermore, if two lie down together they keep warm, but how can one be warm alone. And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart.
Today at church my body was acting out like one of my 5 year olds screaming "I DON'T WANT TO SIT IN CHURCH!". And there was nothing I could do to satisfy it's sick need to make me as miserable as possible. It was a battle of wills, POTS (stamping and kicking) against Michele (trying to talk reason with it). POTS wanted me to be in pain and miserable, and I wanted to do everything I could to relieve my body of the symptoms I was facing.
My body seemed to be having more trouble with circulation than usual. While sitting my blood was pooling at my feet and buttocks(the word "pooling" seems to bring on visions of a swimming pool filled with blood, ewww), and not getting blood flow to my hands and head. The pooling made me ache in my hips and legs, and the lack of blood flow was causing my lips, tongue and nose to tingle and get numb. The pain would become so bad that it made me nauseous. The sermon was really good and my body had become a distraction. To remedy this I kept changing positions; crossing my legs, putting my feet up on the pew, shaking my feet and hands out, and moving around like I had ants in my pants. I'm sure I was a bit distracting to anyone behind me that is plagued with ADD. I'm sure I looked like one of my kinders rolling around on the rug. I finally had had enough and went out to the vestibule (the back of the church before you go into the main part of the church). I took a salt tablet and sat out the sermon next to the drinking fountain deemed necessary because the salt tablet leaves me feeling as parched as the Sahara desert. The ushers kept eyeing me compassionately waiting for something to happen since I've been on the prayer chain more often than I'd care to be. I went back into the main church when the music started up. While I was singing my body went through cycles of feeling fine to fatigue, then numbness and pain which would make me nauseated. I would stop singing, shake my limbs and go through the cycles all over again. I finally get why boxers are always shaking themselves out during their breaks, it's to shake up the blood into those parts of the body that have been hurt by their opponent. I can hear the Rocky anthem playing in the background of my head as I replace myself with the buff Sylvester Stallone (not quite as attractive vision). While all this was happening I kept telling myself this is the body God gave me, I need to stop complaining and accept and rejoice in what I have. Finally the POTS took over and I became so frustrated I shook my whole body out and wanted to growl out loud in the middle of church. "I've had enough of this stupid body God, take it I'm fed up with it! I want a new and improved one please." Is this what God means to suffer in Christ? I don't think so, I'm sure God wasn't too pleased with the fact that I hardly heard a word His servant our pastor was saying.
So many things about church are such a challenge for me, sitting still for over an hour, standing in one place to sing hymns and praise music, singing and running out of air and those dreaded stairs to get to the group I help lead. Do I just let POTS win and give up and stay home? On the other hand church is a place of "us", a place to worship together, unite in prayer and share our burdens so we don't ever have to walk in our pain and our joys alone. My faith in Christ and being close to other believers renews my hope that I'm not going through this alone and that there IS a purpose in this suffering. God does and has revealed His purpose in this many times, but some times His purpose is harder to see when I'm in the middle of the pain. Today I made up those stairs with less trouble than I expected. I'm sure there was someone praying for me when I wasn't able to do it myself. Hence the reason I continue to push through this every week.
Inspired,
Michele
Ecclesiastes 4:9-12
Two are better than one because they have a good return for their labor. For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up. Furthermore, if two lie down together they keep warm, but how can one be warm alone. And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart.
Sunday, January 16, 2011
0 to 70 in Less Than 60 Seconds
Imagine walking into a local cafe, you order your meal and sit at a table waiting for the server to bring you your lunch. As your waiting you overhear a conversation of two woman at the next table.
Gurtie: "Agnes, how are you feeling today?"
Agnes: "Oh Gurtie, just getting out of bed is a chore."
Gurtie: "I know what you mean. When I finally get enough energy to pull myself out of bed, I have to use the wall to balance myself to keep from falling."
Agnes: "That's awful Gurtie, I have the same problem every morning, my dogs
actually make a run for it when I head down the hall."
Gurtie: "It's so frustrating, I tried to take a shower without my shower chair today and almost passed out! I can't even take a shower without a shower chair!"
Agnes: "I'm so glad I don't need one of those yet, though bathing is still a huge challenge, my biggest fear is someone finding me passed out in my birthday suit on the shower floor."
Gurtie: "So, what did you order for lunch?"
Agnes: "Not much, just soup. Never sure what my stomach can handle. Nausea every day gets old Gurtie."
Gurtie:" I hear ya, I've always boasted of having a stomach like a steel trap, now I'm gluten free, lactose intolerant and veggies send my system to a tail spin."
Agnes: "How'd that shopping trip go with your daughter last week, I know you were a bit worried about it?"
Gurtie: "Took the wheelchair, didn't run into too many people. But it is hard not to always be able to get at what you want. It was nice to go shopping
without getting too pooped out!"
Agnes: "Yeah the last shopping trip I made took days to recover."
Gurtie: "How are the migraines, any relief?"
Agnes: "A bit better since the doctor prescribed um.....um....."
Gurtie: "So frustrating when you can't remember the next word, happens to me all the time."
Agnes: Yawn...."Getting tired, should head for home and take a nap."
Gurtie: "Yup, pretty tired myself a nap sounds great!"
Both ladies get up, one grabs the table to steady herself and they both head slowly out the door.
You might be thinking that this conversation is coming from a couple sweet retired ladies struggling with the plagues of old age. But this could easily come from a pair of ladies suffering with dysautonomia. Switch the names to Amy, Ashley, Bethani, Carol, Cathy, Cyndi, Donna, Geney, Kristen, Lyla, Marilyn, Michele, Miranda, Stacy, Tracy or Vi. Instead of the pains of a 70 year old, it could be the pains of twenty, thirty, forty or fifty year old. Way too early for these kinds of problems.
Dysautonomia makes me feel like I'm seventy. When I was younger I promised myself "when I get old I'm never going to be one of "those people" who sit around complaining about their ailments". I'm realizing that when you wake up feeling awful 24/7 and feeling bad plagues every minute of the day, sometimes you just can't get away from it. Feeling ill in the foreground of your thoughts sometimes makes you speak of your illness more than you'd like too. It takes a quite bit to not complain. I'm getting better at giving the pat answer of "I'm fine" to those who are just going through the motions of social etiquette, and being honest with those who really care and want to know.
Feeling like Gurtie with Michele on the inside.
2 Cor. 12:10
Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong.
Gurtie: "Agnes, how are you feeling today?"
Agnes: "Oh Gurtie, just getting out of bed is a chore."
Gurtie: "I know what you mean. When I finally get enough energy to pull myself out of bed, I have to use the wall to balance myself to keep from falling."
Agnes: "That's awful Gurtie, I have the same problem every morning, my dogs
actually make a run for it when I head down the hall."
Gurtie: "It's so frustrating, I tried to take a shower without my shower chair today and almost passed out! I can't even take a shower without a shower chair!"
Agnes: "I'm so glad I don't need one of those yet, though bathing is still a huge challenge, my biggest fear is someone finding me passed out in my birthday suit on the shower floor."
Gurtie: "So, what did you order for lunch?"
Agnes: "Not much, just soup. Never sure what my stomach can handle. Nausea every day gets old Gurtie."
Gurtie:" I hear ya, I've always boasted of having a stomach like a steel trap, now I'm gluten free, lactose intolerant and veggies send my system to a tail spin."
Agnes: "How'd that shopping trip go with your daughter last week, I know you were a bit worried about it?"
Gurtie: "Took the wheelchair, didn't run into too many people. But it is hard not to always be able to get at what you want. It was nice to go shopping
without getting too pooped out!"
Agnes: "Yeah the last shopping trip I made took days to recover."
Gurtie: "How are the migraines, any relief?"
Agnes: "A bit better since the doctor prescribed um.....um....."
Gurtie: "So frustrating when you can't remember the next word, happens to me all the time."
Agnes: Yawn...."Getting tired, should head for home and take a nap."
Gurtie: "Yup, pretty tired myself a nap sounds great!"
Both ladies get up, one grabs the table to steady herself and they both head slowly out the door.
You might be thinking that this conversation is coming from a couple sweet retired ladies struggling with the plagues of old age. But this could easily come from a pair of ladies suffering with dysautonomia. Switch the names to Amy, Ashley, Bethani, Carol, Cathy, Cyndi, Donna, Geney, Kristen, Lyla, Marilyn, Michele, Miranda, Stacy, Tracy or Vi. Instead of the pains of a 70 year old, it could be the pains of twenty, thirty, forty or fifty year old. Way too early for these kinds of problems.
Dysautonomia makes me feel like I'm seventy. When I was younger I promised myself "when I get old I'm never going to be one of "those people" who sit around complaining about their ailments". I'm realizing that when you wake up feeling awful 24/7 and feeling bad plagues every minute of the day, sometimes you just can't get away from it. Feeling ill in the foreground of your thoughts sometimes makes you speak of your illness more than you'd like too. It takes a quite bit to not complain. I'm getting better at giving the pat answer of "I'm fine" to those who are just going through the motions of social etiquette, and being honest with those who really care and want to know.
Feeling like Gurtie with Michele on the inside.
2 Cor. 12:10
Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong.
Tuesday, January 11, 2011
Totally Dysed
It's my blog and I can cry if I want to. It's nice to have a written record of the ups and downs I've experienced on my journey with POTS. Today was definitely a down day. I had my 2nd doctors visit with my new neurologist today. I guess they roll out the welcome mat on the first visit and treat you totally like poo for all the rest.
So I'm waiting in the examination room on the short little table with the thin paper draped across it, when the doctor opens the door and says "Happy New Year, how are you today?" It's a typical greeting when two people first see each other, so I respond "Happy New Year, I'm fine and you?", then he responds, "Good to hear your doing well with the medication increase, how are things going with side effect "A" and "B"?" The doctor is still standing at the door that is wide open and I'm sitting about 4-5 feet away from him on the examination table. I'm mortified that he has just shared something I consider personal and confidential to anyone that might be close enough to hear. At the same time I'm thinking that I didn't mean I'm feeling healthy fine, I was just responding to a simple greeting. I answered his question about the medication side effects, he then does the typical eye-hand coordination exam, eye following finger and little flashlight thing and listens to my heart. He heads for the door and asks about how the compression stockings worked, I tell him not so good, then he says I'll see you in about 4 months. His body language is telling me he's in a hurry and has no time to answer a long list of my questions. So I narrow my list to just two. I inform the doctor that I would like to ask a few questions. He remains at the door that is still open and waits for my questions. Again the body language is telling me to hurry up. I ask him about the neuropathy I'm experiencing and are there any long term dangers like there are with diabetes? He tells me there's nothing to be concerned about and begins to head out the door! I jump off of the table and follow him out. I say "I have another question, I'm having some trouble dispensing my medication." I pull out my bottle and explain my issue in the hallway in a hurry, he then changed my prescription to alleviate my dispensing issue and headed quickly down the hall. It almost felt like he was running away from me. He couldn't have spent more than 3 minutes with me and he was running on schedule. I was so upset my POTS symptoms set in and I had to hold myself up to make my next appointment.
I'll deal with this tomorrow when I've cooled down a bit, just needed a place to vent.
Dysed by my Doc,
Michele
So I'm waiting in the examination room on the short little table with the thin paper draped across it, when the doctor opens the door and says "Happy New Year, how are you today?" It's a typical greeting when two people first see each other, so I respond "Happy New Year, I'm fine and you?", then he responds, "Good to hear your doing well with the medication increase, how are things going with side effect "A" and "B"?" The doctor is still standing at the door that is wide open and I'm sitting about 4-5 feet away from him on the examination table. I'm mortified that he has just shared something I consider personal and confidential to anyone that might be close enough to hear. At the same time I'm thinking that I didn't mean I'm feeling healthy fine, I was just responding to a simple greeting. I answered his question about the medication side effects, he then does the typical eye-hand coordination exam, eye following finger and little flashlight thing and listens to my heart. He heads for the door and asks about how the compression stockings worked, I tell him not so good, then he says I'll see you in about 4 months. His body language is telling me he's in a hurry and has no time to answer a long list of my questions. So I narrow my list to just two. I inform the doctor that I would like to ask a few questions. He remains at the door that is still open and waits for my questions. Again the body language is telling me to hurry up. I ask him about the neuropathy I'm experiencing and are there any long term dangers like there are with diabetes? He tells me there's nothing to be concerned about and begins to head out the door! I jump off of the table and follow him out. I say "I have another question, I'm having some trouble dispensing my medication." I pull out my bottle and explain my issue in the hallway in a hurry, he then changed my prescription to alleviate my dispensing issue and headed quickly down the hall. It almost felt like he was running away from me. He couldn't have spent more than 3 minutes with me and he was running on schedule. I was so upset my POTS symptoms set in and I had to hold myself up to make my next appointment.
I'll deal with this tomorrow when I've cooled down a bit, just needed a place to vent.
Dysed by my Doc,
Michele
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