One of my favorite books to read to my kindergartners is If You Give a Mouse a Cookie by Laura Numeroff. The book starts with a picture of an adorable mouse holding a chocolate chip cookie, with the words;"If you give a mouse a cookie, he will ask for some milk to go with it." In the story the child keeps giving the mouse what he asks for, only to be asked for something else. It's a very sweet story, and in the past I've always used this to describe the typical direction home renovation projects usually go. If you replace the bathtub, you'll want new fixtures to go with it, until in the end you have remodeled your entire bathroom.
Well it seems like my villain disease dysautonomia falls into the same category. If you give Michele dysautonomia she'll get EDS ( Ehlers Danlos Syndrom) to go along with it. Or how about one of the dozens of other syndromes that seem to like to tag along. Several months ago there was a posting on one of my favorite fb sites (Dysautonomia Awareness), "What else do you have?". The commonalities in diseases from a staggering number of those who shared were mind boggling! Here's a list of the ones that came up most often.
POTS-Postural Orthostatic Syndrome
NCS-Neurocardiogenic Syncope
EDS- Ehlers Danlos Syndrome
IBS-Irritable Bowel Syndrome
CFS-Chronic Fatigue Syndrome
Asthma
Raynauds
Migraines
Lupus
Fibromyalgia
Insomnia
Heart disease
Chiari
Hypothyroid
Arthritis
And a large number of digestive disorders.
I could easily place half of these on my list, though I have not been diagnosed with them. Why no diagnosis? I don't want to take anything else, I'm so super sensitive to medications, one more might throw me overboard. So I push through the popping hyper extended joints, stretchy skin, migraines, princess and the pea syndrome, arthritis pain, purple hands and toes just so I don't have to take one more pill.
Well my big fat foot brought me back to my doctors office. I lived with one swollen foot for three weeks, and wearing ugly shoes during those weeks was the last straw! I want my pretty shoes, I want my pretty shoes (as I lay on the floor kicking and screaming)! So I drag myself to the doctors office, and I'm sitting on the examination table. The head doctor comes in and takes one look at my foot and informs me that my foot is indeed swollen (wow, she's good). She asks about recent injuries, which I answer "none". Does it hurt, "sometimes". Length of time swollen, "three weeks then, now it's been five". She asks about medications, and I give her the list. She looks back at my feet which are now a lovely shade of purplish/black, she raises her eyebrows, and asks if this is normal? I smile and respond "yes". She looks through my lab results from my recent hospital visit and asks me what the hospital did for my low platelet count? My answer, "What low platelet count?". My doctor responds with, "they didn't do anything about this platelet count? Hmph!". She spends several minutes rechecking my chart, and starts running down a list of thing to watch for. As she goes down the list; head aches, dizziness, swelling, discoloration, shortness of breath and irregular heartbeat. I remind her that those are all symptoms I experience on a daily basis. She "hmph's" again, and says nothing for a few minutes, then says that if I feel worse than normal to call her immediately. Now in my head I'm thinking, how do I distinguish worse than normal. These things happen in at various degrees daily. She sends me to the lab, where they take 10 blood samples and after bandaging me up the nurse declares "oh... I forgot one, sorry." Grrr.... don't you just love those phlebotomists! After being stabbed by a needle for the second time, I schedule my next appointment for the following week as directed by my doctor, and head out the door. I then realize I have no idea what having a low platelet count means!
Now being curious and feeling the need to be informed, I head for home (with a side trip for some yummy Chinese food), to find out what having a low platelet count means. I get on my well used computer and head for Web MD. Before dysautonomia I had never heard of this sight before, but with all the disease tag-alongs from dysautonomia I go there to keep myself informed about drug side effects and my current medical issues. Now, this site isn't for the faint at heart! There should be a warning on this site in big RED letters, If you haven't been given a specific diagnosis stop here! They give you every medical possibility on your inquiry. The list for low platelet count included Lupus and Leukemia, AHHHHH! Calm down Michele, no one mentioned Leukemia on the list, get a grip!
So I went back to the doctors today. My platelet count is still dropping, she still doesn't know why, and she wants to run more bloodwork. And to top it off, she has no idea why my foot is swollen! I WANT TO WEAR PRETTY SHOES!!! Can't she just stick a pin in it and pop it, that should bring the swelling right down!
I'm much more at ease with it at this point, I know my autonomic system seems to continue to fail me in one way or another. I'm pretty sure dysautonomia is the culprit, and in the mean time, I'll just stay away from sharp objects for a while! If this turns out to be some new disease, I want to name it. I was thinking of something along the line of BFF syndrome (Big Fat Foot Syndrome), and who doesn't need a bff, that's what I'd like to know!
Still inspired,
Michele
Monday, June 21, 2010
Saturday, June 12, 2010
Electric Cart/Bumper Car
It's Saterday, and better yet, shopping day! I woke up this morning having a worse than normal POTSy morning. Being typical Michele, I decided to push through it (see previous blog), and take off for the market. As I get out of my car I'm feeling shaky, dizzy and tired. Now this should have been my cue to turn around and head for home and my very comfortable bed. But no....., being my typical stubborn self I decided to push through it. Though I'm not so stubborn that I didn't see the writing on the wall, and I did make what I believe to be a smart decision, and use the electric shopping cart in the store.
I picked the one closest to the door, got settled in and pushed forward. It won't go! There is no manual, I guess most people are brilliant enough to figure it out. After several minutes, and several tries, I get my cart to go. Immediately I felt I had made a mistake, I felt like I was moving in slow motion, this shopping cart was sooooooo slow! It was like energizer bunny meets Tommy turtle. In my head I'm screaming "I NEED SPEED!" When I'm in my car I like to drive fast, driving isn't a means to get from place to place, it's a race to see how fast I can get there. You've seen the likes of me before, I'm the one passing you on the road only to be stopped at the next stop light, but at least I got there first! So I'm lumbering down the first isle, and have to get up to reach the soda on the top shelf, and I'm thinking, "I hope all my items aren't on the top shelf, or I'm doomed!". The store I'm shopping at is going through a remodel, and they have decided to move everything around, the gingerale is no longer in the soda isle, and I'm screaming again, "who in corperate America decided to put gingerale in the nut isle?" Oh I know, only a nut would come up with that (sorry just venting). I get my gingerale, and head around the corner. I ended up going down an isle that I didn't need to go down, and my shopping cart dies! I look around, and see a young woman working at the end of the isle, and I call out to her, she doesn't respond, I think she's ignoring me, so I try again, this time I get her attention. I ask her if she can call someone to bring me a new cart, and she disappears. As I'm sitting there, I decide to try my cart again, and Bingo, the cart begins to move, again at a snails pace. I decide to drive myself to another cart to save the store workers the trouble. I pass by management, and explain what I'm attempting to do, and they send someone with me to help me switch carts.
Carts are switched and I'm on my way! This cart is way faster than the last one, woohoo the race is back on, until I crashed into the corner of a graham cracker display and knock over a half dozen boxes of crackers. And I'm thinking to myself, "well what do you expect, they're in my way, what else was I going to do, slow down and go around them?" I head for the place I left off, and find that two out of every three items are on a shelf that I can't reach grrr! I turn the corner and the bread isle is cluttered with bread racks that workers are unloading, and my speedy cart won't fit. I'm thinking again, " hmmmm, my cart would make a pretty decent bumper car, and I'm sure I could push those bread racks right out of my way!" But reality sets in, and I don't want to be banned from the store, so I stop my cart, get out, and walk down the isle and get the bread items I need, then head back to my cart. I'm out of breath, and could really use a couch at this moment, but I push forward. I need bananas, and try to get as close as possible. I stop in front of a dried fruit display and reach for the bananas, but the cart decides it really liked crashing into the graham cracker display and creeps forward and knocks over the dried fruit display, oh no! Now, the veggie guy and I are on pretty good terms, and when he heard his display tumble over he turns around to give the person who destroyed his display the evil eye! After he realizes it's me, he gives me the one eyebrow raised look, and heads in my direction. At this point I'm out of my cart trying to make things right for my favorite veggie guy! He asks "what's up?" and I explain about my rough morning and the need for the cart. He tells me he's surprised by my story, but he explains that the store usually doesn't allow demolition drivers to drive their electric shopping carts. I chuckle and apologize, and after all is picked up I head very carefully to finish my shopping. Because the store is not in it's usual order, I've forgotten a few things and head back to look for the items missing. My cart is overflowing, these carts are not meant for those with families. As I head around the corner, the eggs slip off the top of the cart, along with my bananas! I hang my head down with shame, and look for someone from the store to clean the mess I've just created. The young woman who went for help when I needed a new cart gives me a look and heads for the phone, next thing I hear is "clean up on isle 12". I get the items I've missed, including the eggs, and rest them on my lap, and head to the check out isle.
The store is really busy, so I unload the cart myself. By the time I'm done, I'm so dizzy, I can't see straight. I sit back in my cart a bit dazed, the cashier asks for my store club card, and I give her a blank stare. She asks again, and very shakily I hand her my card. I can only imagine what she must be thinking about me (intoxicated comes to mind). She completes the sale, hands me my receipt, and wishes me a good day. The bag boy asks if I need help out, and I tell him "no thank you", I believe I've caused enough trouble and head out the door.
I'm sure after I left the store management found a video clip of me and made a sign for the employees warning them not to allow me to use the electric cart again. It probably says something like "Warning this woman is dangerous and will destroy store property! Do not allow her to use an electric cart!"
Honestly I won't do that again, I'm more tired from that trip than the trips when I push my own cart. Needless to say, the next time I will know better than to go shopping without enough spoons to push my own cart.
Still inspired,
Michele
I picked the one closest to the door, got settled in and pushed forward. It won't go! There is no manual, I guess most people are brilliant enough to figure it out. After several minutes, and several tries, I get my cart to go. Immediately I felt I had made a mistake, I felt like I was moving in slow motion, this shopping cart was sooooooo slow! It was like energizer bunny meets Tommy turtle. In my head I'm screaming "I NEED SPEED!" When I'm in my car I like to drive fast, driving isn't a means to get from place to place, it's a race to see how fast I can get there. You've seen the likes of me before, I'm the one passing you on the road only to be stopped at the next stop light, but at least I got there first! So I'm lumbering down the first isle, and have to get up to reach the soda on the top shelf, and I'm thinking, "I hope all my items aren't on the top shelf, or I'm doomed!". The store I'm shopping at is going through a remodel, and they have decided to move everything around, the gingerale is no longer in the soda isle, and I'm screaming again, "who in corperate America decided to put gingerale in the nut isle?" Oh I know, only a nut would come up with that (sorry just venting). I get my gingerale, and head around the corner. I ended up going down an isle that I didn't need to go down, and my shopping cart dies! I look around, and see a young woman working at the end of the isle, and I call out to her, she doesn't respond, I think she's ignoring me, so I try again, this time I get her attention. I ask her if she can call someone to bring me a new cart, and she disappears. As I'm sitting there, I decide to try my cart again, and Bingo, the cart begins to move, again at a snails pace. I decide to drive myself to another cart to save the store workers the trouble. I pass by management, and explain what I'm attempting to do, and they send someone with me to help me switch carts.
Carts are switched and I'm on my way! This cart is way faster than the last one, woohoo the race is back on, until I crashed into the corner of a graham cracker display and knock over a half dozen boxes of crackers. And I'm thinking to myself, "well what do you expect, they're in my way, what else was I going to do, slow down and go around them?" I head for the place I left off, and find that two out of every three items are on a shelf that I can't reach grrr! I turn the corner and the bread isle is cluttered with bread racks that workers are unloading, and my speedy cart won't fit. I'm thinking again, " hmmmm, my cart would make a pretty decent bumper car, and I'm sure I could push those bread racks right out of my way!" But reality sets in, and I don't want to be banned from the store, so I stop my cart, get out, and walk down the isle and get the bread items I need, then head back to my cart. I'm out of breath, and could really use a couch at this moment, but I push forward. I need bananas, and try to get as close as possible. I stop in front of a dried fruit display and reach for the bananas, but the cart decides it really liked crashing into the graham cracker display and creeps forward and knocks over the dried fruit display, oh no! Now, the veggie guy and I are on pretty good terms, and when he heard his display tumble over he turns around to give the person who destroyed his display the evil eye! After he realizes it's me, he gives me the one eyebrow raised look, and heads in my direction. At this point I'm out of my cart trying to make things right for my favorite veggie guy! He asks "what's up?" and I explain about my rough morning and the need for the cart. He tells me he's surprised by my story, but he explains that the store usually doesn't allow demolition drivers to drive their electric shopping carts. I chuckle and apologize, and after all is picked up I head very carefully to finish my shopping. Because the store is not in it's usual order, I've forgotten a few things and head back to look for the items missing. My cart is overflowing, these carts are not meant for those with families. As I head around the corner, the eggs slip off the top of the cart, along with my bananas! I hang my head down with shame, and look for someone from the store to clean the mess I've just created. The young woman who went for help when I needed a new cart gives me a look and heads for the phone, next thing I hear is "clean up on isle 12". I get the items I've missed, including the eggs, and rest them on my lap, and head to the check out isle.
The store is really busy, so I unload the cart myself. By the time I'm done, I'm so dizzy, I can't see straight. I sit back in my cart a bit dazed, the cashier asks for my store club card, and I give her a blank stare. She asks again, and very shakily I hand her my card. I can only imagine what she must be thinking about me (intoxicated comes to mind). She completes the sale, hands me my receipt, and wishes me a good day. The bag boy asks if I need help out, and I tell him "no thank you", I believe I've caused enough trouble and head out the door.
I'm sure after I left the store management found a video clip of me and made a sign for the employees warning them not to allow me to use the electric cart again. It probably says something like "Warning this woman is dangerous and will destroy store property! Do not allow her to use an electric cart!"
Honestly I won't do that again, I'm more tired from that trip than the trips when I push my own cart. Needless to say, the next time I will know better than to go shopping without enough spoons to push my own cart.
Still inspired,
Michele
Wednesday, June 9, 2010
The Push!
The push, not to be confused with La Push (the native American village in which a very gorgeous Jacob resides)! Anyone with a chronic disorder knows what "the push" is, it's pushing your body to it's very limits, sometimes just to do a simple task. We all do it, and many of us pay for it later. To not do the task would be giving up or giving in. It would be the same as a prize fighter quiting a fight before he even started just because he might lose! For me, doing the task is part of living, to give up is to stop living.
I recently had a crash (severe symptomatic episode) at church. I knew I wouldn't be able to make it up the stairs to help lead a small group, so I had asked a friend to let the other leader know I wouldn't be able to make it. Well this lead to a well meaning friend taking over some basic decisions for me. I knew I needed to go home and rest, but next thing I know I'm being told I should use my wheelchair. Now I'm more than willing to use my chair if the episode is really bad, but that day I just couldn't make it up stairs. I knew that I could make it back to my car, but most likely at a very slow pace. I was told that not using my chair was an issue of pride, and that I should get over my pride issue and use the chair. Again, I know my friends intentions were only to look out for my best interest, but guilt and shame only made me feel worse. Next I'm being told that someone would be driving me home, now I'm on the fence on that one. At the time I felt up to driving, but if I had walked to my car maybe I would have needed a ride home. But the options were taken from me. Coming from a family with a handicapped family member, I learned very early that you don't just help the handicapped, you give them the option, for example; asking"can I open the door for you?", instead of just opening the door. I just want my options. Now if I'm not responding coherently to your questions, please make the decisions for me, in fact you might want to call 911.
Well, this well meaning friend brought me home. Next thing I know we're discussing my work options! I had shared that work leaves me exhausted in the evenings and weekends, but the joy of teaching is so worth it! I shared that if I had to quit it would be like a death sentence to me. Being isolated in the evenings and on the weekends if tough enough, I can't imagine living like that 24/7. I know many of you are living this reality, and I know many of you are doing some amazing things with the time you're given, I'm just not ready for that yet! I was told that that may be where my life is heading and that I should face that reality. I FACE THAT REALITY EVERY DAY! I know it's a possibility, but as long as I can work, I will work and pay the price for it, it's worth it! When I'm at work I feel so much better than when I'm at home, I think I'm getting spoons from my students, and that's how I'm surviving.
I guess the purpose of this blog is to let those who have people with chronic illness in their lives, to be sensitive to their wants and needs, and to ask them if they need help. And if you are suffering from a chronic illness, don't be afraid to ask for what you need, and to be OK to decline if you don't need the help. I believe that letting others make decisions for you gives them free reign to always make decisions for you. Positive boundaries are a good thing, it gives me some sense of control in my life, even though I suffer with a disease that leaves me feeling like I have very little control.
I hope you understand that I do feel very fortunate to have so many amazing people who care about me and want what's best for me in my life. I know these friends only have the best of intentions, but sometimes we're the only ones who know what we truly need. For many of us "the push" is worth it.
Always inspired,
Michele
I recently had a crash (severe symptomatic episode) at church. I knew I wouldn't be able to make it up the stairs to help lead a small group, so I had asked a friend to let the other leader know I wouldn't be able to make it. Well this lead to a well meaning friend taking over some basic decisions for me. I knew I needed to go home and rest, but next thing I know I'm being told I should use my wheelchair. Now I'm more than willing to use my chair if the episode is really bad, but that day I just couldn't make it up stairs. I knew that I could make it back to my car, but most likely at a very slow pace. I was told that not using my chair was an issue of pride, and that I should get over my pride issue and use the chair. Again, I know my friends intentions were only to look out for my best interest, but guilt and shame only made me feel worse. Next I'm being told that someone would be driving me home, now I'm on the fence on that one. At the time I felt up to driving, but if I had walked to my car maybe I would have needed a ride home. But the options were taken from me. Coming from a family with a handicapped family member, I learned very early that you don't just help the handicapped, you give them the option, for example; asking"can I open the door for you?", instead of just opening the door. I just want my options. Now if I'm not responding coherently to your questions, please make the decisions for me, in fact you might want to call 911.
Well, this well meaning friend brought me home. Next thing I know we're discussing my work options! I had shared that work leaves me exhausted in the evenings and weekends, but the joy of teaching is so worth it! I shared that if I had to quit it would be like a death sentence to me. Being isolated in the evenings and on the weekends if tough enough, I can't imagine living like that 24/7. I know many of you are living this reality, and I know many of you are doing some amazing things with the time you're given, I'm just not ready for that yet! I was told that that may be where my life is heading and that I should face that reality. I FACE THAT REALITY EVERY DAY! I know it's a possibility, but as long as I can work, I will work and pay the price for it, it's worth it! When I'm at work I feel so much better than when I'm at home, I think I'm getting spoons from my students, and that's how I'm surviving.
I guess the purpose of this blog is to let those who have people with chronic illness in their lives, to be sensitive to their wants and needs, and to ask them if they need help. And if you are suffering from a chronic illness, don't be afraid to ask for what you need, and to be OK to decline if you don't need the help. I believe that letting others make decisions for you gives them free reign to always make decisions for you. Positive boundaries are a good thing, it gives me some sense of control in my life, even though I suffer with a disease that leaves me feeling like I have very little control.
I hope you understand that I do feel very fortunate to have so many amazing people who care about me and want what's best for me in my life. I know these friends only have the best of intentions, but sometimes we're the only ones who know what we truly need. For many of us "the push" is worth it.
Always inspired,
Michele
Sunday, May 30, 2010
How does God want to use this battered body
I was writing to a friend on facebook, and learned so much through the writing of this letter, that I thought I would share it.
Hi my friend,
It sounds like we're in the same quandary. I've been really struggling with how God is going to use this battered body of mine. I feel so useless. Before POTS I was very involved in ministry at my church. I was a leader in a recovery group, and had my fingers entwined in it daily, along with the usual community and church activities. Much of the recovery ministry involved making phone calls (I sponsored woman with eating disorders and co-dependency issues), and leading small groups and also going to churches and sharing my testimony. I can barely hold the phone to my ear for more than 5 minutes, and now I can't stand and speak in front of people, the adrenaline rush use to be a good thing, now I get so symptomatic I can't finish my testimony, which is not good for this type or ministry. I've thought about using the speaker phone to ease the phone issue, but I can't put the woman I sponsor on speaker phone because of confidentiality issues, so needless to say, I'm not able to take my usual part in that ministry. Community projects are also difficult as you may know, not knowing how I'm going to feel and not knowing what the weather is going to be like can be a challenge. The church usually has sign ups for those various activities, but how can I sign up when I don't know how I'm going to feel on any given day. There's seems to be a medical reason for not participating in just about every ministry opportunity out there.
I have never been one to sit well, and at first I thought God was calling me to rest. Resting in Him is a very good thing (I had a bible study on Resting in Him just before I became very ill with POTS, and knew that God does call on us to rest). Before my POTS diagnosis I had been so busy serving I had exhausted myself. I thought God had called me to rest and be served. It's been 2 years, and I'm beginning to wonder if I may be wrong in thinking resting is what God wants for me, there has to be something more to this life than resting! But again I'm using my timing and my understanding, not His. Sarah had to wait till she was very old before she could finally bare a child, and she wasn't the best example of waiting patiently, but God fulfilled His promise to her, and her son became the father of a nation. It's in our nature to want everything now. I know this is difficult, I'm sitting there with you. Maybe God has called us to minister to each other, to comfort and encourage one another. God never meant for us to be alone or isolated. Maybe this is our ministry for now. On the bright side, the other day you acknowledged something I had said, and at the time I was feeling so invisible, you gave me the encouragement I needed to realize I'm not alone and I'm alive for a reason. You never know how just something small may be a lifeline to someone struggling. Keep being the amazing woman God made you, keep praying that you are obedient to His will, and listen to that whisper of God answering your prayers, God loves us so much, and only wants the best for us.
Always inspired,
Michele
Before I wrote this letter I was playing a computer game, in my head I told myself I need to write to my facebook friend who is struggling with the same issues of not feeling useful to God, in my head I figured I would write when I was finished playing, but the answer I got, was get off this game and write to your friend now. I'm thankful God doesn't hit me over the head every time I want my way. I wrote to my friend, and received many of the answers I have been searching for. I had begun considering my computer as a place of prayer, since I spend much of my time praying for those in need, I thought that was my ministry, but I wanted more. Encouraging one another becomes the social connection I believe I was missing.
James 5:16
Therefore confess your sins to each other and pray for each other so that you may be healed.
Hi my friend,
It sounds like we're in the same quandary. I've been really struggling with how God is going to use this battered body of mine. I feel so useless. Before POTS I was very involved in ministry at my church. I was a leader in a recovery group, and had my fingers entwined in it daily, along with the usual community and church activities. Much of the recovery ministry involved making phone calls (I sponsored woman with eating disorders and co-dependency issues), and leading small groups and also going to churches and sharing my testimony. I can barely hold the phone to my ear for more than 5 minutes, and now I can't stand and speak in front of people, the adrenaline rush use to be a good thing, now I get so symptomatic I can't finish my testimony, which is not good for this type or ministry. I've thought about using the speaker phone to ease the phone issue, but I can't put the woman I sponsor on speaker phone because of confidentiality issues, so needless to say, I'm not able to take my usual part in that ministry. Community projects are also difficult as you may know, not knowing how I'm going to feel and not knowing what the weather is going to be like can be a challenge. The church usually has sign ups for those various activities, but how can I sign up when I don't know how I'm going to feel on any given day. There's seems to be a medical reason for not participating in just about every ministry opportunity out there.
I have never been one to sit well, and at first I thought God was calling me to rest. Resting in Him is a very good thing (I had a bible study on Resting in Him just before I became very ill with POTS, and knew that God does call on us to rest). Before my POTS diagnosis I had been so busy serving I had exhausted myself. I thought God had called me to rest and be served. It's been 2 years, and I'm beginning to wonder if I may be wrong in thinking resting is what God wants for me, there has to be something more to this life than resting! But again I'm using my timing and my understanding, not His. Sarah had to wait till she was very old before she could finally bare a child, and she wasn't the best example of waiting patiently, but God fulfilled His promise to her, and her son became the father of a nation. It's in our nature to want everything now. I know this is difficult, I'm sitting there with you. Maybe God has called us to minister to each other, to comfort and encourage one another. God never meant for us to be alone or isolated. Maybe this is our ministry for now. On the bright side, the other day you acknowledged something I had said, and at the time I was feeling so invisible, you gave me the encouragement I needed to realize I'm not alone and I'm alive for a reason. You never know how just something small may be a lifeline to someone struggling. Keep being the amazing woman God made you, keep praying that you are obedient to His will, and listen to that whisper of God answering your prayers, God loves us so much, and only wants the best for us.
Always inspired,
Michele
Before I wrote this letter I was playing a computer game, in my head I told myself I need to write to my facebook friend who is struggling with the same issues of not feeling useful to God, in my head I figured I would write when I was finished playing, but the answer I got, was get off this game and write to your friend now. I'm thankful God doesn't hit me over the head every time I want my way. I wrote to my friend, and received many of the answers I have been searching for. I had begun considering my computer as a place of prayer, since I spend much of my time praying for those in need, I thought that was my ministry, but I wanted more. Encouraging one another becomes the social connection I believe I was missing.
James 5:16
Therefore confess your sins to each other and pray for each other so that you may be healed.
Couch potato
This blog is dedicated to all those couch potatoes out there. I don't believe any of us with POTS wanted or chose this lifestyle, it was kind of placed on our plates and I for one have begrudgingly accepted what I've been served. I don't believe a single person with chronic illness wakes up in the morning and says, hey looking forward to nausea, dizziness and fatigue today, I can't wait to lay around in bed all day. I can't remember a day before my diagnosis with POTS that I spent a single day in bed unless I was very ill. I truly feel less than a couch potato, more like a potato skin. I feel like I'm empty, potato less, purposeless and empty.
The past two weeks I've been struggling with the emotional side effects of this disease. Being chronically ill has put me on self preservation mode. I have a tendency to experience a negative symptom from an activity, and then that activity is crossed off the list, never to be tried again. Well, before I knew it, almost everything I like or want to do has been crossed off the list. I'm doing very little, and have begun to become quite lethargic with my life. Here's a small sample of the things I have crossed off the list:
The past two weeks I've been struggling with the emotional side effects of this disease. Being chronically ill has put me on self preservation mode. I have a tendency to experience a negative symptom from an activity, and then that activity is crossed off the list, never to be tried again. Well, before I knew it, almost everything I like or want to do has been crossed off the list. I'm doing very little, and have begun to become quite lethargic with my life. Here's a small sample of the things I have crossed off the list:
- Concerts: The loudness of the music causes an adrenaline rush, which then triggers brachycardia, shortness of breath and dizziness.
- Shopping: Unless I can find someone to go with me to push my wheelchair, I can't walk for long periods of time.
- Outdoor activities: If the temperature is over 75 degrees, I'll pass out.
- Night activities: I'm usually too pooped after 8:00
The list could go on, but I'm sure you get the gist of it. I'm beginning to come up with reasons not to do things I haven't tried yet, because I'm sure it will trigger some POTS symptom. To be honest part of me doesn't want to find out that I can't do this new thing either. Just one more thing to put on my can't do list. I'm very aware that I have allowed this disease to imprison me.
I became very aware of my lethargic behavior yesterday. I was playing computer games, recovering from my trip to the grocery store. My family was coming and going to different activities. Being Memorial day weekend many of my friends have special plans. I began feeling sorry for myself, oh poor me, I can't go anywhere or do anything. This disease is stealing my life from me, boo-hoo-hoo. I want to go to the beach, listen to the ocean calm my soul, see God's handiwork and feel the sand between my toes. I had a list for not going; the walk from the parking lot to the shore will poop me out, it might be too warm, I probably should go with someone, what if I become symptomatic and I'm by myself, my POTS symptoms will probably get in the way of my enjoyment, blah, blah, blah! Excuse after excuse. At that moment I lost it a bit, I decided to go to the beach by myself. Who cares if something happens, at least I'll be doing something I love. What I discovered was that I needed that beach trip to knock some sense in me, to at least try to do the things I love, and if I become symptomatic, so be it. Better to try something and MAYBE fail, than to not try at all. I'm not saying my trip to the beach was symptom free, brachycardia, nausea and dizziness were definitely there, but I would have experienced those symptoms at home. I went to the beach, I had a good time, and I survived! I was so afraid of becoming symptomatic, that I stopped living my life at all. I'm going to feel nauseous, dizzy, fatigued, tired and short of breath at home anyway, why not do the things I love feeling yucky. As Nike says, "Just do it!"
Still inspired,
Michele
Saturday, May 22, 2010
Random Facts
Well I've recently been awarded the Sugar Doll Award from two of my favorite bloggers, Michelle bobisdysautonomia.blogspot.com and Miranda mirandapowell.blogspot.com, I am truly honored to be recognized by two such brave and talented woman. Upon receiving this acknowledgement I'm suppose to write 10 random facts about myself in order for my readers to get to know me a little more personally. Or maybe understand the madness behind the writing.
Fact one: Those of you who have been reading my blog since the beginning know I love clothes, and love to shop. I may take my love of clothing a bit to far, I even worry about whether my pajamas match. It's a good thing that the panties labeled with the days on them aren't still popular, I would never be caught wearing Sunday's underwear on Friday (what would people think?). I wasn't always so fashion conscious in my youth though. My favorite Summertime outfits consisted of matching terry cloth shorts and shirts. For some strange reason I thought the shorts looked much better pulled all the way up to my armpits. Now I will give myself some credit, I was a beanpole, and I guess I thought if I pulled them up to my armpits, it would take them longer to slip down over my nonexistent butt!
Fact two: I didn't always want to be a teacher, in fact I hated playing school as a child, it meant I would have to write, which I hated doing (funny how things change). My big dream was to be an airline stewardess. Traveling to distant lands, romances with strangers, flying period was the ultimate high. My mom had a brilliant plan to help me with this glamorous career choice. When I graduated from high school she was going to send me to Germany to attend a Frauschule (which is a school back in the day, that teaches young woman how to be good housewives). That sounds so archaic now, I can't believe I was on board with this idea, I guess I'd do anything for my dream job (which I now believe is just a glamorized waitress). The purpose of this was that I would become fluent in German so that I could apply for a job at Lufthansa.
Fact three: My thoughts on marriage were quite unique. My big dream when I was in college was to marry a pastor. Being a pastors wife sounded amazing with me. I thought I would be perfect, I loved my God and His church. I loved to serve, I'm a pretty good cook for the many potlucks I'd be going to, being there to support my pastor husband while he supported his congregation sounded amazing. I didn't realize what a sacrificial life a wife of a pastor has, I'm glad God didn't grant that prayer, though it still sounds pretty cool. I did end up getting married, but he probably is the complete opposite to a pastor as you can get. For some silly reason I followed my hormones and not my smart brain. Though my marriage did last 23 years, 23 years of love, pain and deep suffering.
Fact four: My music choices are almost as random as I am. As a preteen and young teen I loved the Partridge Family. I swooned every time I heard David Cassidy sing "I think I love you". I liked BTO, Peter Frampton and Pink Floyd. But I have to admit I really, really loved the Go-go's, trying to dress like them, sing like them (I had a unrealistic biased opinion of my singing talents), I just wanted to be a Go-go! As a grown up, I mostly listen to pop Christian music.
Fact Five: I love to dance, though I have no talent for it. In my college years disco was quite popular, I would spend great quantities of time practicing my dance moves with my two best friends Bruce and Victor! We would take turns partnering like John Travolta and Karen Gorney, and then trying to do the hustle until we fell on the floor exhausted. Later in life, being a parent of teens, I would walk by their bedrooms and their music would wake up the inner dance diva in me, and my uncontrollable urge to dance would take over and I'd allow the dance diva to do her thing. Unfortunately my daughter considered my dancing entertaining in a not-so-complementary way, and my son would slam his door in utter embarrassment. Lucky for them the dance diva in me only comes out on rare occasions.
Fact six: I taste and smell color, the technical term is synethesia. I can see color when I'm eating food, and the color of the same food can change for many reasons. For example, a red delicious apple tastes yellow/brown, but the color I taste would depend on it's ripeness and variety. I discovered I had this special talent when a friend offered me some avocados from her tree, and I turned her down because they tasted brown. She asked me what I meant by tasting brown, and I told her that when I taste avocados I see brown when I eat them. She asked if other foods tasted like other colors and I said yes. It was then that I realized that everyone didn't tasted food in color.
Fact seven: I have had several dreams (maybe nightmares would be a better description) come true. I dream of people getting into accidents or being injured at work and that day the person I dreamed about has been injured in the exact same way as I dreamed. Often I haven't seen or thought of these people in years. It doesn't happen often, but I often question the validity of my dream until after reality has struck.
Fact eight: If I had unlimited time, energy and financial resources, I would go back to school and become a doctor. I have always had this inner sense of how my body works, what's wrong with me, and where the problems are. I would love to study and do on research myself, to get a deeper understanding of dysautonomia and how to cure it.
Fact nine: I was on a float once in a local parade. I wasn't chosen for any special beauty or talent, I was there because my precious little sister has cerebral palsy and they wanted her on the Elks club float. The Elks were sponsoring my sister, they paid for her crutches and anything else she needed that insurance didn't cover. The Elks club is filled with many kind and considerate men and woman who truly want to help those in need.
Fact ten: I'm really quite boring, and I can't think of any more random facts.
It's time to pass the baton or Sugar Doll award, and the Sugar doll award goes to (drum roll please) Laura Dysauto for her blog
The POTS ran away with my SPOONS. She shares her personal experiences with dysautonomia in a way that is easy to relate to.
Always inspired,
Michele
Fact one: Those of you who have been reading my blog since the beginning know I love clothes, and love to shop. I may take my love of clothing a bit to far, I even worry about whether my pajamas match. It's a good thing that the panties labeled with the days on them aren't still popular, I would never be caught wearing Sunday's underwear on Friday (what would people think?). I wasn't always so fashion conscious in my youth though. My favorite Summertime outfits consisted of matching terry cloth shorts and shirts. For some strange reason I thought the shorts looked much better pulled all the way up to my armpits. Now I will give myself some credit, I was a beanpole, and I guess I thought if I pulled them up to my armpits, it would take them longer to slip down over my nonexistent butt!
Fact two: I didn't always want to be a teacher, in fact I hated playing school as a child, it meant I would have to write, which I hated doing (funny how things change). My big dream was to be an airline stewardess. Traveling to distant lands, romances with strangers, flying period was the ultimate high. My mom had a brilliant plan to help me with this glamorous career choice. When I graduated from high school she was going to send me to Germany to attend a Frauschule (which is a school back in the day, that teaches young woman how to be good housewives). That sounds so archaic now, I can't believe I was on board with this idea, I guess I'd do anything for my dream job (which I now believe is just a glamorized waitress). The purpose of this was that I would become fluent in German so that I could apply for a job at Lufthansa.
Fact three: My thoughts on marriage were quite unique. My big dream when I was in college was to marry a pastor. Being a pastors wife sounded amazing with me. I thought I would be perfect, I loved my God and His church. I loved to serve, I'm a pretty good cook for the many potlucks I'd be going to, being there to support my pastor husband while he supported his congregation sounded amazing. I didn't realize what a sacrificial life a wife of a pastor has, I'm glad God didn't grant that prayer, though it still sounds pretty cool. I did end up getting married, but he probably is the complete opposite to a pastor as you can get. For some silly reason I followed my hormones and not my smart brain. Though my marriage did last 23 years, 23 years of love, pain and deep suffering.
Fact four: My music choices are almost as random as I am. As a preteen and young teen I loved the Partridge Family. I swooned every time I heard David Cassidy sing "I think I love you". I liked BTO, Peter Frampton and Pink Floyd. But I have to admit I really, really loved the Go-go's, trying to dress like them, sing like them (I had a unrealistic biased opinion of my singing talents), I just wanted to be a Go-go! As a grown up, I mostly listen to pop Christian music.
Fact Five: I love to dance, though I have no talent for it. In my college years disco was quite popular, I would spend great quantities of time practicing my dance moves with my two best friends Bruce and Victor! We would take turns partnering like John Travolta and Karen Gorney, and then trying to do the hustle until we fell on the floor exhausted. Later in life, being a parent of teens, I would walk by their bedrooms and their music would wake up the inner dance diva in me, and my uncontrollable urge to dance would take over and I'd allow the dance diva to do her thing. Unfortunately my daughter considered my dancing entertaining in a not-so-complementary way, and my son would slam his door in utter embarrassment. Lucky for them the dance diva in me only comes out on rare occasions.
Fact six: I taste and smell color, the technical term is synethesia. I can see color when I'm eating food, and the color of the same food can change for many reasons. For example, a red delicious apple tastes yellow/brown, but the color I taste would depend on it's ripeness and variety. I discovered I had this special talent when a friend offered me some avocados from her tree, and I turned her down because they tasted brown. She asked me what I meant by tasting brown, and I told her that when I taste avocados I see brown when I eat them. She asked if other foods tasted like other colors and I said yes. It was then that I realized that everyone didn't tasted food in color.
Fact seven: I have had several dreams (maybe nightmares would be a better description) come true. I dream of people getting into accidents or being injured at work and that day the person I dreamed about has been injured in the exact same way as I dreamed. Often I haven't seen or thought of these people in years. It doesn't happen often, but I often question the validity of my dream until after reality has struck.
Fact eight: If I had unlimited time, energy and financial resources, I would go back to school and become a doctor. I have always had this inner sense of how my body works, what's wrong with me, and where the problems are. I would love to study and do on research myself, to get a deeper understanding of dysautonomia and how to cure it.
Fact nine: I was on a float once in a local parade. I wasn't chosen for any special beauty or talent, I was there because my precious little sister has cerebral palsy and they wanted her on the Elks club float. The Elks were sponsoring my sister, they paid for her crutches and anything else she needed that insurance didn't cover. The Elks club is filled with many kind and considerate men and woman who truly want to help those in need.
Fact ten: I'm really quite boring, and I can't think of any more random facts.
It's time to pass the baton or Sugar Doll award, and the Sugar doll award goes to (drum roll please) Laura Dysauto for her blog
The POTS ran away with my SPOONS. She shares her personal experiences with dysautonomia in a way that is easy to relate to.
Always inspired,
Michele
Saturday, May 1, 2010
The Fishbowl
I'm sure many of you remember that first fish you won at a local carnival. I remember my first fish very well, I was eleven and at the carnival with a few of my girlfriends. I remember the booth with all the fishbowls with fish in them in the middle of the booth. To win a fish all you had to do was hand the man a dollar and he gave you 3 ping-pong balls. It was your job to throw the ping-pong ball and make it land into a bowl. Sounds pretty easy until you try it. Usually the ball hits the side of a bowl and lands on the floor somewhere. I remember it only took me three dollars to win my beloved fish (what a money maker for the carnies, they probably got 100 fish for a dollar). Now that I have my fish, I push my brain to come up with a creative name, and name her Goldie (wow, that was a push LOL). I begin carrying Goldie around the carnival grounds, and realize I'm unable to go on any more rides for fear of jeopardizing Goldie's life (she's already become a burden within an hour), so I take off for the cotton candy machine and head for home. When I get home I realize I don't have a bowl for Goldie, and am thankful I didn't spend all my carnival money. I take off to the corner fish store, and four dollars later I have a bowl, some rocks and some fish food for Goldie.
The first week, Goldie's is living it up at my house, she has a clean bowl, she's fed every day , and I talk to her whenever I'm in my room. Week two, Goldie is fed every day, I rarely say a word to her, and she's lucky if her bowl is cleaned once a week. Week three, I think maybe if I feed her less she won't poop so much, and her bowl won't need to be cleaned as much. Week four and a half, I wake up and think "what's that smell?", I look around the room, and notice Goldie's bowl is a greenish brown, and I can barely see Goldie and she's struggling to breath. I quickly clean the bowl, feel slightly guilty for not caring for my fish, and do a little better for a couple of days. By week five, the bowl is stinky and brown, and I'm thinking to myself, DIE Goldie, DIE! Finally after several weeks of abuse, Goldie goes to the big ocean in the sky via my toilet.
Lately I've given some thought to my poor goldfish's life, and thinking I might be reaping what I have sown when it comes to my treatment of Goldie. Lately I've been feeling like a fish in a bowl, watching the world around me living and going on with life.
Recently I went on my typical trip to the grocery store, and as normal, by the time I was done, I was exhausted. Behind me was a sweet elderly woman with a cane. My heart went out to a fellow sufferer of a body that was no longer working at 100%. By the time I was done unloading my cart, my body was finished. I knew I would barely have the energy to walk out of that store and load my twelve bags of groceries into my car. I slowly walk around to the side of my car, when I see the sweet lady with the cane walking to her car. She opens her trunk and gingerly unloads her cart, and is backing quickly out of her parking spot and driving down the street. I guess she had me fooled, I'm sure she could have taken me down with a gentle push of her cane. I finish loading my car, and drag myself to the driver seat, close the door, close my eyes, and try to will my heartbeat to slow down, to ease my gasping for air, to stop the world from spinning, and pray that I have the strength to be able to place my hands on the steering wheel so that I will be able to drive myself home before my frozen goods begin to melt. As my heart slows down and my breathing eases up, I slowly open my eyes trying to focus on the people and things outside my car windshield. As I sat there watching, I realized that the world around me was alive and busy. People coming and going without a clue that I was sitting in my car barely able to function. I felt so separate, and almost not a part of this world around me.
It's the same for me at home, I watch my children come and go, watch the people outside walking the neighborhood, hear about the things people do on the weekends, read about the fun things people are doing on face book, and feel like that fish in the bowl, seeing but not being a part of it.
At church, I watch the people come and go, catching up and sharing, but I can no longer participate in church activities so I've lost the connection, it's work for me to go from person to person. I now feel like a stranger to these friends I use to know so many precious details of their lives. I feel like I must sound like a broken record to them, my life is the same, I'm still sick, I still am blessed to work, and I still have an amazing family. When I do get the chance to talk to someone, I ask about how they are doing , but I seem to be getting a pat answer from many, I'm sure I must be doing something to get the quick answers, probably the fact that I'm not there and not connected.
Now I'm sure some of you are thinking jump out of the bowl and get out there and live. I guess part of the problem with that is fear, there are so many things that can trigger a crash of my symptoms that I don't want to pay for it later. I'm also so tired on the weekends after working all week, that I have practically no energy to expend on extra curricular activities. It feels like the last hospital visit took more than a few days and a chunk of change, it feels like a part of me was left in that lost and found room they left me in. I know I need to work harder at telling others what I need, but I just don't have the energy to do that. Part of me is becoming compliant to this life of solitude, but the other part of me screams for my old life, my busy others filled life. I wish this blog could be more inspiring for those who struggle with the same problem, but I haven't found the answer to this one yet, when I do, I'm sure to blog about it.
Desiring to inspire,
Michele
The first week, Goldie's is living it up at my house, she has a clean bowl, she's fed every day , and I talk to her whenever I'm in my room. Week two, Goldie is fed every day, I rarely say a word to her, and she's lucky if her bowl is cleaned once a week. Week three, I think maybe if I feed her less she won't poop so much, and her bowl won't need to be cleaned as much. Week four and a half, I wake up and think "what's that smell?", I look around the room, and notice Goldie's bowl is a greenish brown, and I can barely see Goldie and she's struggling to breath. I quickly clean the bowl, feel slightly guilty for not caring for my fish, and do a little better for a couple of days. By week five, the bowl is stinky and brown, and I'm thinking to myself, DIE Goldie, DIE! Finally after several weeks of abuse, Goldie goes to the big ocean in the sky via my toilet.
Lately I've given some thought to my poor goldfish's life, and thinking I might be reaping what I have sown when it comes to my treatment of Goldie. Lately I've been feeling like a fish in a bowl, watching the world around me living and going on with life.
Recently I went on my typical trip to the grocery store, and as normal, by the time I was done, I was exhausted. Behind me was a sweet elderly woman with a cane. My heart went out to a fellow sufferer of a body that was no longer working at 100%. By the time I was done unloading my cart, my body was finished. I knew I would barely have the energy to walk out of that store and load my twelve bags of groceries into my car. I slowly walk around to the side of my car, when I see the sweet lady with the cane walking to her car. She opens her trunk and gingerly unloads her cart, and is backing quickly out of her parking spot and driving down the street. I guess she had me fooled, I'm sure she could have taken me down with a gentle push of her cane. I finish loading my car, and drag myself to the driver seat, close the door, close my eyes, and try to will my heartbeat to slow down, to ease my gasping for air, to stop the world from spinning, and pray that I have the strength to be able to place my hands on the steering wheel so that I will be able to drive myself home before my frozen goods begin to melt. As my heart slows down and my breathing eases up, I slowly open my eyes trying to focus on the people and things outside my car windshield. As I sat there watching, I realized that the world around me was alive and busy. People coming and going without a clue that I was sitting in my car barely able to function. I felt so separate, and almost not a part of this world around me.
It's the same for me at home, I watch my children come and go, watch the people outside walking the neighborhood, hear about the things people do on the weekends, read about the fun things people are doing on face book, and feel like that fish in the bowl, seeing but not being a part of it.
At church, I watch the people come and go, catching up and sharing, but I can no longer participate in church activities so I've lost the connection, it's work for me to go from person to person. I now feel like a stranger to these friends I use to know so many precious details of their lives. I feel like I must sound like a broken record to them, my life is the same, I'm still sick, I still am blessed to work, and I still have an amazing family. When I do get the chance to talk to someone, I ask about how they are doing , but I seem to be getting a pat answer from many, I'm sure I must be doing something to get the quick answers, probably the fact that I'm not there and not connected.
Now I'm sure some of you are thinking jump out of the bowl and get out there and live. I guess part of the problem with that is fear, there are so many things that can trigger a crash of my symptoms that I don't want to pay for it later. I'm also so tired on the weekends after working all week, that I have practically no energy to expend on extra curricular activities. It feels like the last hospital visit took more than a few days and a chunk of change, it feels like a part of me was left in that lost and found room they left me in. I know I need to work harder at telling others what I need, but I just don't have the energy to do that. Part of me is becoming compliant to this life of solitude, but the other part of me screams for my old life, my busy others filled life. I wish this blog could be more inspiring for those who struggle with the same problem, but I haven't found the answer to this one yet, when I do, I'm sure to blog about it.
Desiring to inspire,
Michele
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