Saturday, February 27, 2010
Pray Without Ceasing
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
Thursday, February 25, 2010
The Colors of Dysautonomia

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.
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.
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.
Wednesday, February 10, 2010
Living out my defiant teens in my forties
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
Saturday, January 30, 2010
Dysautonomia SUCKS!
I've been brought up with the mindset that if I didn't have anything nice to say, then don't say anything at all. Well, I've done that for two years, and now I just want to scream, "I'm tired of waking up every morning feeling like crap!". "I want my old life back!"
Nausea, brain fog, chronic fatigue, tachycardia, shortness of breath, insomnia, medications that could easily place you in a scene from "one flew over the cuckoo's nest", and temperature intolerance are all symptoms that can easily be hid behind a great pair of jeans a t-shirt and some make-up. So can frustration, and anger. Just put on a smile and tell the world you're the same as always. Having to tell myself daily that I have nothing to really complain about because "at least I don't have cancer" isn't easy, and the guilt I feel because I'm upset about my illness when there are people out there who are dieing and have a better outlook on their illness than I do. Having a positive attitude can help, but sometimes you just have to say "Life sucks right now!" and deal with the guilt later.
I would just like to wake up one morning not feeling like I'm going to puke and pass out. I want to go to the mountains, go hiking, and play in the snow. I want to go to the mall and shop and not drop. I want to sing my favorite songs all the way through, and sing another, and another, and stand while singing. I want to work in my garden, and paint my living room. I don't want to be sick, and I don't want to ask for help. I know there are some great lessons in all this, but today I don't want to learn them!
Well dysautonomia sucks, thanks for letting me share.
Not very inspired,
Michele
Sunday, January 24, 2010
No longer on the River DeNial
It's funny how the things I thought I could never get use to are a part of who I now am. Some of my normals include:
- Waking up ready to down a large quantity of water before getting out of bed to relieve an already full badder.
- Dealing with nausea every morning, and not getting a precious bundle of joy after 9 months of morning sickness.
- Wearing compression stockings at the young age of 49 instead of the ripe old age of 70.
- Parking in the handicapped parking, and being ready to defend myself when someone questions why someone who doesn't look handicapped is using the spot. My fists are clenched and ready to fight. My fighting techniques would get anyone rolling on the ground in laughter, and they would probably walk away wondering if the state considers the insane handicapped, and that's how I acquired my plates.
- Purple, my favorite color, how many people can say that their hands and feet show off their favorite color every day.
- Always being prepared that bending over to pick up something off the floor, may leave me looking and feeling like a drunken sailor.
- Accepting the fact that during my drunken sailor state, others may be questioning my sobriety.
- On those days when oxygen is in short supply, it's ok that my sentences will usually be incomplete and end with an ahhhhh what's that word? Or what's his name? Or even what's your name?
- Using a pill box with the days of the week stamped on it doesn't make you old.
- When my heart is racing through my chest and I'm short of breath, I just pretend that I just ran the 6K.
- It's ok to be flopping out of the bathtub like a fish out of water ( I can see my gills, oh I mean nostals gasping for air) because of my heat intolerance and gravity issues.
- Wearing a medical id tag can be fashionable with a little web searching.
- Asking for help actually makes a task more fun.
- I believe I know more about the auto immune system than most doctors.
- I won't get arrested for breaking some sort of health law for eating salty snacks and adding a ton of salt to my food.
- Being white because of the lack of sunshine is the "new black" of fashion.
- Icevests may not be a fashion statement, but they do attract hugs.
- Eating 6 meals a day won't cause obesity.
- Some times it's worth the price of a day in bed to do the thing you love most!
Living with dysautonomia has been challenging, but I'm getting use to my new normal. As most of you know I love the serenity prayer, one part has always stumped me "accepting hardship as a pathway to peace". How could hardship lead to peace? Well in my case, it's the accepting of the hardship of dysautonomia instead of fighting it that has made my life more at peace. I still have those days when the symptoms are difficult to carry, but that's when I rely on friends to carry the burden with me.
Always inspired,
Michele
Saturday, January 16, 2010
Teaching with P.O.T.S.
- Tissue monitor, this student insists on getting me a tissue every time I sniffle.
- Baby wipe monitor, this students gets me a baby wipe at any sign of messy hands.
- Heater monitor, this student turns on and off the heater as needed.
- Sanitation monitors, these students are in charge of keeping the floor litter free.
- Lost object finder, when ever I misplace an item this student searches for it. Wish I had one of these at home.
- Dropped object picker upper, since bending over is a problem, it's great to have someone pick things up for me.
I could go on, but you get the picture. Each of these jobs was student generated, and teacher appreciated. The students are learning about helping others and taking pride in a job well done.
My lesson: It's ok to ask for help, even from a five year old, it makes them feel needed and important.
I realize I'm very fortunate to be able to work and have POTS. Many of my friends with dysautonomia can't, which has given me an appreciation for every day that I can work. I walk into my classroom every day aware that this could be the last year I'm able to work. Working each day as if it could be your last definately changes your attitude. I have never enjoyed working as much as I do this year.
Always inspired, and grateful to work,
Michele
Saturday, January 2, 2010
An ode to teacher's gifts
Many off you may think less of me when you have finished this blog, but since it's my blog and you're reading it I might as well give it a go.
I usually use this blog as a way to express my personal frustrations and insights I've experienced since I've been diagnosed with POTS. But as I was clearing away the gifts under my Christmas tree, and reflecting upon those gifts I received from my precious students I began to chuckle at this question in my head.... "What were they thinking?" (the students parents that is).
So here are a few of my favorites.
Dragon and castle plastic snow globe. I guess I can put that next to my Harry potter wand and my Lord of the Rings sword (I really don't own these, but my parents must think I do).- Extra large plush bear. This would definately go with my Raggedy Ann and Andy (sorry Von) which again I don't have.
- Pink, purple and magenta super fuzzy scarf. This would look great on a six year old or maybe a life size Barbie, though I believe even she has more fashion sense.
- A 36" ceramic plaque in gold embelished with Cherubs. It must weigh 25 pounds! I'm sure Wayne Newton would have loved this gift. I would probably need to hire a handy man to install it on my wall, Hmmm..... Handy man, might be worth digging it out.
- Purple anything, lotion that instantly causes my lungs to close up, sweaters, blouses, candles, or stationary. This is the only draw back to sharing my favorite color with my students.
- 4" plastic cactus, which will go nicely with the plastic velvet roses I received for Valentines day. These items will do so much for our environment, just think of all the oxygen they produce in their lifetime!
- The little nighty one of my students claimed that "my daddy picked that out just for you Mrs. McGough". I later found out that one came from one of my student teachers.
- At least a dozen platic statues in various shapes and sizes that could easily fill a chotchky cabinet if I chose to do so.
Now I have received some wonderful gifts. Such as book store gift cards that enable me to purchase more books I can read to my precious students. I treasure the hand made gifts such as the hand made ornaments I pull out of my ornament box every year. Those ornaments are special to me. I have to be honest though, they don't really go with the silver, gold and white theme on my Christmas tree. Now I may put them up some day if I become one of those people who has a home big enough to have a tree in each room, and is highlighted on the HGTV channel. Now I know many of you may be shaking your head in disgust at my lack of sensitivity in this matter, but to be perfectly honest, my own childrens home made ornaments are not on the tree either!
Well it's time to get back to putting away those special gifts, I may have to get another shed if I don't have that garage sale.
Always inspired,
Michele