Being a Christian with dysautonomia gives me the opportunity to look at my disease as a way to see how God wants me to learn from the experiences of this disease. To be honest, there are times when the symptoms of this disease make that a bit difficult (I'm sure you've seen some of the frustration in these blogs). I do have to say, that I NEVER experience brainfog while praying. Those names and details are always quite clear. I sometimes wonder if I was always in prayer, that maybe I'll never experience brainfog again! I can just imagine how that might sound as I'm teaching, "Oh Lord help my students grasp the concept of addition, help them to remember that if they add two items and three items they might want to use their fingers or objects to make that concept clearer." I think I'll have to give that idea a little more thought, and conversations with people might need a little more creative thinking as well.
Prayer has always played an important role for me as a Christian. It's pretty easy for me to pray for my close friends, people on the prayer chain at my church, and the woman I have become friends with through dysautonomia and facebook. My chair in front of my computer has become a regular place of prayer for me as I daily hear of the pain and struggles of these brave woman and men with this disease. It's easy for me to relate to their pain and frustration and to beseach God because I so easily relate to their pain and frustrations.
The area of prayer I struggle with the most is prayer for my health and healing. Surely others deserve a miracle more than I do. A friend with cancer needs to survive so that she can spend the rest of her life with the family that needs her. Those struggling with worse symptoms of dysautonomia deserve to be healed quickly because they have experienced pain that I haven't. Sometimes I think it's a lack of faith, other times it's a feeling that I don't deserve to be healed. It's at those times that I need to remember the length God went to when He gave me everlasting life. I have seen God answer so many prayers in my life. I have seen food provided during times of financial hardship, I've seen relationships restored when there was no hope, I've been given peace at times of great stress, and I've watched the impossible made possible, but this is one area of prayer I struggle with most.
Don't get me wrong, I do pray for myself. I just don't pray for healing with the same passion and conviction as I do for others. This morning I asked myself how long do I pray for healing? And the answer was loud and clear (God does tend to shout at me at times). Pray without ceasing! Don't stop! Pray with conviction! Pray because God doesn't want you to suffer! Pray because you deserve to be healed! I just need to remember God's timing isn't my timing. Sarah had to wait for years to give birth to a child she desired with all her heart. Two years is nothing. compared to her wait. Waiting isn't an easy task, as an American, I can be pretty impatient. But sometimes I just need to be patient and obedient. Remember to pray without ceasing!
Always inspired,
Michele
Saturday, February 27, 2010
Thursday, February 25, 2010
The Colors of Dysautonomia
Purple, purple, purple.Purple, purple's what that spells.
Purple grapes on the vine.
Purple Kool-ade's fine.
Purple, purple's what that spells.
The color songs we sing in my classroom are the most requested songs in my room, they sing with as much gusto as a pub full of men singing their favorite beer song. There is a passion for color that begins at an early age, one of my favorite childhood memories was when I opened up my first box of Crayola crayons in the 64 count box. I remember the waxy smell, the sharp poiny tips with the sharpener in the back of the box (Crayola was ingenious to insert that sharpener in the back, it meant that their young enthusiastic customers would quickly sharpen their way to another new box of crayons in no time),and the endless possibilities those crayons represented, made me believe I could create anything my heart desired.
I have always been intrigued by color. As a design major I took several university courses on color, how it affects mood and emotion. I studied how to use color in marketing and interior design. Color has a huge impact on our mood and feelings. Cool colors calm, and warm colors excite us. If you don't think you're affected that much by color, see how you feel when your next door neighbor paints their house orange or pink.
I discovered later in life that my association with color is a bit different than many of you. I have always seen color in the things I taste and smell. I discovered this quite by accident one day when a friend asked me if I would like an avacodo she had picked from her tree. I responded by saying "No thank you, I don't like avacodo's , they tastes brown," she questioned me further, and this sense of taste and color that I have had all my life and assumed everyone else had as well was to be something unusual and unheard of. Several years later I discovered that there are others with this unique ability, called synesthesia.
It figures that dysautonomia is not blind to color, and has displayed itself in various ways throughout my body.
Purple: My favorite color. Hands and feet turn various shades of this color with a dash of black and blue to highlight my eyes.
The color songs we sing in my classroom are the most requested songs in my room, they sing with as much gusto as a pub full of men singing their favorite beer song. There is a passion for color that begins at an early age, one of my favorite childhood memories was when I opened up my first box of Crayola crayons in the 64 count box. I remember the waxy smell, the sharp poiny tips with the sharpener in the back of the box (Crayola was ingenious to insert that sharpener in the back, it meant that their young enthusiastic customers would quickly sharpen their way to another new box of crayons in no time),and the endless possibilities those crayons represented, made me believe I could create anything my heart desired.
I have always been intrigued by color. As a design major I took several university courses on color, how it affects mood and emotion. I studied how to use color in marketing and interior design. Color has a huge impact on our mood and feelings. Cool colors calm, and warm colors excite us. If you don't think you're affected that much by color, see how you feel when your next door neighbor paints their house orange or pink.
I discovered later in life that my association with color is a bit different than many of you. I have always seen color in the things I taste and smell. I discovered this quite by accident one day when a friend asked me if I would like an avacodo she had picked from her tree. I responded by saying "No thank you, I don't like avacodo's , they tastes brown," she questioned me further, and this sense of taste and color that I have had all my life and assumed everyone else had as well was to be something unusual and unheard of. Several years later I discovered that there are others with this unique ability, called synesthesia.
It figures that dysautonomia is not blind to color, and has displayed itself in various ways throughout my body.
Purple: My favorite color. Hands and feet turn various shades of this color with a dash of black and blue to highlight my eyes.
Green: The color my students say I turn when I'm feeling extremely nauseated.
Blue: The color I feel when the air is thin and wishing I had a portable airtank.
Gray: The color of brainfog, that lovely inability not to finish a thought or find a word or name.
Yellow: I see this happy color dancing before my eyes just as I'm ready to pass out.
Red: The color that represents the strange tingling all over my body when my body can't handle heat or an unexpected activity. This feeling compares to the scene in Harry Potter and the Chamber of Secrets, when Harry, Hermoine and Ron take polyjuice potion. The cameras focus in on Harry's hand that is bubbling through his veins. Every time I go through this I feel as if I'm in a sci-fi movie and I'm going to turn into some outlandish beast.
Blue: The color I feel when the air is thin and wishing I had a portable airtank.
Gray: The color of brainfog, that lovely inability not to finish a thought or find a word or name.
Yellow: I see this happy color dancing before my eyes just as I'm ready to pass out.
Red: The color that represents the strange tingling all over my body when my body can't handle heat or an unexpected activity. This feeling compares to the scene in Harry Potter and the Chamber of Secrets, when Harry, Hermoine and Ron take polyjuice potion. The cameras focus in on Harry's hand that is bubbling through his veins. Every time I go through this I feel as if I'm in a sci-fi movie and I'm going to turn into some outlandish beast.
Silver: The tingle and sharp feeling I have on the tips of my fingers and toes.
Black: The dark thoughts I experience when the doctor ups my meds.
Black: The dark thoughts I experience when the doctor ups my meds.
Color still fills a unique perspective in my life, but dysautonomia has given it a new way to look at it.
Still inspired,
Michele
P.S. I struggled for a couple of weeks posting this blog. I had fun pics I downloaded to go with the colors I see and feel. But this blog application doesn't allow for pics to be placed in various places in the blog. Having my creativity squashed, and the frustrating hours of trying creative ways to make this my way made me less inspired to finish this blog. I had even considered changing blog sites, but didn't want to make that change. A new topic came into mind, and I knew I had to get this one out, even if it didn't give me that warm and fuzzy feeling inside. I hope everyone is having a good day.
Wednesday, February 10, 2010
Living out my defiant teens in my forties
When I look back at my teen years, I believe that I was every parents dream child. I worked hard at school, did my chores at home, went to church, followed the rules, no drinking, no drugs, I wasn't promiscuous, and there wasn't a defiant bone in my body. Now many of you may be thinking poor thing, she missed out on all the fun, but reality is, I had a blast, and didn't believe I was missing out on anything. My life seems to have followed that path with the exception of my marrying my former husband LOL. I was always a straight and narrow, don't wander off the path kind of gal.
Now I'm in my late forties, quickly approaching fifty, and I've noticed that rebellion has turned its ugly head in my direction. Dysautonomia compares to a hard nosed parent or an overbearing husband. Dysautonomia has too many restrictions and rules to follow. Too many don'ts and the do list is no fun. My body feels like I'm always "in the time out chair", or "the old ball and chain". Just about everything I do has restrictions, and is often very frustrating.
There are days when I'm just tired of following the restrictions dysautonomia has placed on my body. Sometimes I just need to do what I want to do, and pay the price just because it's worth it. Even if the price may be a trip to the emergency room or a day in bed. Well on Monday I had one of my rebellious days. And before your imagination starts wandering, I didn't go out drinking or carousing, or chasing after loose men (I still haven't taken the trip to "that" wild side yet). I just had to prune my peach tree. I'm sure I've disappointed a few of you, but there's just something about hard work, pruning, and proving to my former husband that I can still keep up the house. Truly the husband issue just plays a small part in this.
The reason pruning the tree is so difficult is that many of my dysautonomia symptoms make it practically impossible. I can't hold my hands over my head for more than a minute so lifting pruning sheers to cut branches is a bit of a challenge to begin with. Getting up on a ladder can make me dizzy and tachy. Tilting my head back to see which branch to cut causes dizziness, migraines and a variety of other symptoms. I have no arm strength, so squeezing the pruning sheers is nearly impossible, and finally, bending over to throw away the branches makes me dizzy. I'm sure many of you are wondering why I would want to put my body through this kind of torture, and all I can say is "I don't know, I just want to!" I guess it's the same reason that my kindergartners have for cutting large chunks of hair from their heads or smelling vomit that has just been covered with sorb-it. It doesn't make sense, but they do it anyway.
So on Monday I went out to my back yard with pruning sheers in my hands and a plan to limit myself to trimming two to three branches at a time. So I begin pruning branch number one, I can barely balance the pruning sheers over my head, but I manage to lop off my first branch, no dizziness and no damage done, and a small victory dance in my head. Off to branch number two, I struggle to get the pruning sheers over my head, and can barely squeeze them closed, branch number two falls, but I can barely move fast enough to step aside to keep the branch from hitting me. Now I know I should stop at this point, but I never stop when I should, and to be honest I knew this before I started and just lied to myself about having a plan, just to say I had one. I now attempt to cut branch number three, my arms are shaking, but I do manage to hook a branch between the sheers, and I'm jubilant at the success of this small feat. I attempt to squeeze the pruning sheers, but all strength has left my arms. I'm determined to cut the third branch, so I come up with a brilliant idea, I use my head "literally". I put my forehead against one of the lopping poles, and grab the other with both hands. I then push the handle of the pruning sheers toward my head, and snap, the branch is cut and begins to fall. I am now totally exhausted the branch is falling, too dizzy to move I just duck my head and hope that when the branch falls it doesn't hurt too badly. I smile at the craziness of this experience and chuckle because I feel I'm in the middle of one of Lucille Ball's episodes of "I Love Lucy". I've escaped my hard headed pruning adventure without a scratch. Now again you would think I should give up at this point, but no, the success of the last cut has given me a bit of an adrenaline rush (another wonderful but usually inconvenient symptom of dysautonomia), I take advantage of the rare timing of this usually inconvenient symptom and attempt another branch. Branch number four is exactly like branch number three except this time I'm left without the adrenaline rush and I'm totally wiped out. I finally listen to my body, I have no choice at this point, and I head for the house, my wonderful body lets me know that I'm now going to pay for that brief amount of defiant behavior. I manage to make it to the door just as my world around me begins to swim and dance and mock me by saying I hope it was worth it. I sit down before I actually pass out, I lean my head against the back door, close my eyes, feel my heart racing through my chest, I'm gasping for breath, my head begins to throb, and I think to myself, "yes, it was definitely worth it!"
My body did pay for my brief moment of defiance, but to be honest I'm looking forward to my next adventure.
Truly inspired,
Michele
Now I'm in my late forties, quickly approaching fifty, and I've noticed that rebellion has turned its ugly head in my direction. Dysautonomia compares to a hard nosed parent or an overbearing husband. Dysautonomia has too many restrictions and rules to follow. Too many don'ts and the do list is no fun. My body feels like I'm always "in the time out chair", or "the old ball and chain". Just about everything I do has restrictions, and is often very frustrating.
There are days when I'm just tired of following the restrictions dysautonomia has placed on my body. Sometimes I just need to do what I want to do, and pay the price just because it's worth it. Even if the price may be a trip to the emergency room or a day in bed. Well on Monday I had one of my rebellious days. And before your imagination starts wandering, I didn't go out drinking or carousing, or chasing after loose men (I still haven't taken the trip to "that" wild side yet). I just had to prune my peach tree. I'm sure I've disappointed a few of you, but there's just something about hard work, pruning, and proving to my former husband that I can still keep up the house. Truly the husband issue just plays a small part in this.
The reason pruning the tree is so difficult is that many of my dysautonomia symptoms make it practically impossible. I can't hold my hands over my head for more than a minute so lifting pruning sheers to cut branches is a bit of a challenge to begin with. Getting up on a ladder can make me dizzy and tachy. Tilting my head back to see which branch to cut causes dizziness, migraines and a variety of other symptoms. I have no arm strength, so squeezing the pruning sheers is nearly impossible, and finally, bending over to throw away the branches makes me dizzy. I'm sure many of you are wondering why I would want to put my body through this kind of torture, and all I can say is "I don't know, I just want to!" I guess it's the same reason that my kindergartners have for cutting large chunks of hair from their heads or smelling vomit that has just been covered with sorb-it. It doesn't make sense, but they do it anyway.
So on Monday I went out to my back yard with pruning sheers in my hands and a plan to limit myself to trimming two to three branches at a time. So I begin pruning branch number one, I can barely balance the pruning sheers over my head, but I manage to lop off my first branch, no dizziness and no damage done, and a small victory dance in my head. Off to branch number two, I struggle to get the pruning sheers over my head, and can barely squeeze them closed, branch number two falls, but I can barely move fast enough to step aside to keep the branch from hitting me. Now I know I should stop at this point, but I never stop when I should, and to be honest I knew this before I started and just lied to myself about having a plan, just to say I had one. I now attempt to cut branch number three, my arms are shaking, but I do manage to hook a branch between the sheers, and I'm jubilant at the success of this small feat. I attempt to squeeze the pruning sheers, but all strength has left my arms. I'm determined to cut the third branch, so I come up with a brilliant idea, I use my head "literally". I put my forehead against one of the lopping poles, and grab the other with both hands. I then push the handle of the pruning sheers toward my head, and snap, the branch is cut and begins to fall. I am now totally exhausted the branch is falling, too dizzy to move I just duck my head and hope that when the branch falls it doesn't hurt too badly. I smile at the craziness of this experience and chuckle because I feel I'm in the middle of one of Lucille Ball's episodes of "I Love Lucy". I've escaped my hard headed pruning adventure without a scratch. Now again you would think I should give up at this point, but no, the success of the last cut has given me a bit of an adrenaline rush (another wonderful but usually inconvenient symptom of dysautonomia), I take advantage of the rare timing of this usually inconvenient symptom and attempt another branch. Branch number four is exactly like branch number three except this time I'm left without the adrenaline rush and I'm totally wiped out. I finally listen to my body, I have no choice at this point, and I head for the house, my wonderful body lets me know that I'm now going to pay for that brief amount of defiant behavior. I manage to make it to the door just as my world around me begins to swim and dance and mock me by saying I hope it was worth it. I sit down before I actually pass out, I lean my head against the back door, close my eyes, feel my heart racing through my chest, I'm gasping for breath, my head begins to throb, and I think to myself, "yes, it was definitely worth it!"
My body did pay for my brief moment of defiance, but to be honest I'm looking forward to my next adventure.
Truly inspired,
Michele
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