This seems to be the week of MORE! MORE concerns that my POTS is getting worse. MORE stress from work with report cards and benchmarks due. MORE fear as I face a new diagnosis and a doctor who appears afraid to treat me. MORE darkness as the increase in meds makes me feel like I'm in a valley I desperately don't want to be in. MORE losses of things I love because of POTS. MORE chemical sensitivities, no more stepping out my door during cold weather to smell one of my favorite smells, burning fireplaces! MORE fatigue, MORE nausea and MORE sleep deprivation!
I want MORE of a social life. I want MORE energy to do the stuff I have to ask help for. I want MORE of my old self back. I want MORE time without the constant reminder that I have POTS.
I'll be so thankful when my body has adjusted to the med increase and I'm less whinny and MORE like my old more cheerful self!
Need to be MORE inspiring,
Michele
Psalm 40:2
He brought me out of the pit of destruction, out of the miry clay; And He set my feet upon a rock making my footsteps firm.
Saturday, November 13, 2010
Thursday, November 11, 2010
Fire Walker?
My sense of humor seems to take a front seat whenever I get news that tries to take me to my "unhappy" place. As I lie in bed contemplating my visit with my new neurologist and his diagnosis of peripheral neuropathy my humorous part of my brain decided to come up with what I could do with my new symptom or talent (to be on the positive side). Visions of fire walkers began dancing in my head! Hey, I could totally do that and look and appear to master the whole "mind over matter" thing! The funny thing about my imagination is it's pretty detailed. I can hear Brick House by the Commodores playing in the background as I strut across the burning rocks in a spandex jumpsuit that only members of a Jane Fonda '80's workout video could pull off. The people around me are clapping and bouncing to the music clad in shorts and t-shirts of the tropical Paradise they're surrounded by. As specific realities of my POTS symptoms set in so do the details of the scene in my head. Being temperature sensitive the scene changes from a tropical paradise to the frozen arctic. The spandex jumpsuit is replaced by a fur lined parka and the people are no longer swaying to the music in shorts and t-shirts, but huge coats and lined snow pants. There's no music playing, only the chattering of teeth by the crowd. As quickly as the scene changed from tropical paradise to arctic freeze, so did the humor change to hard truth. This new diagnosis isn't really funny.
As the doctor was moving a metal rod from my toes and up my leg, the reality that I couldn't feel the rod below my shin left me puzzled. The same thing was done with my fingertips up my arm, at first I was relieved that I could feel the rod on my fingertips, but then I was shocked to realize the rod was freezing cold at the fold of my elbow, and I didn't know it was cold until then. Peripheral neuropathy the doctor notes and on to other test and a discussion on treating my recently increased POTS symptoms. The discussion on neuropathy would have to wait as I educated the doctor on how I was treated in the past and a bit of hand holding (my holding his hand) as I encouraged him in proceeding with my typical regimen to combat my symptoms. I left the office with a lab slip for blood work and new questions to my already long list of unknowns with this disease.
This new diagnosis wasn't a total surprise, I had suspected it for almost a year now. Many of my POTSy friends have shared their experiences with neuropathy, and my symptoms seemed to echo theirs. But I've always felt that until I had a diagnosis, I would keep on my rose colored glasses and pretend my symptoms were just something else! I never seemed to ask the question about neuropathy in the past, because it always seems like we're dealing with some other more life threatening symptom of this disease, or major hurdles such as wheel chairs and handicapped parking.
I've noticed that I've been given the truth of this disease in small bite size chunks. Heart rate and dizziness chunk, nausea and fatigue chunk, wheel chair and handicapped parking chunk, migraines and supplements chunk, and now new doctor, health plan and neuropathy chunk. Never more than I can chew, never more than I can handle. God knows me too well and because of that I'll trust that this too is as manageable as all the other chunks.
Still inspired, Michele
Proverbs 15:15
All the days of the afflicted are bad, but a cheerful heart has a continual feast.
Neuropathy may be associated with varying combinations of weakness, autonomic changes, and sensory changes. Loss of muscle bulk or fasciculations, a particular fine twitching of muscle, may be seen. Sensory symptoms encompass loss of sensation and "positive" phenomena including pain. Symptoms depend on the type of nerves affected (motor, sensory, or autonomic) and where the nerves are located in the body. One or more types of nerves may be affected. Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch. The autonomic nerve damage causes problems with involuntary functions leading to symptoms such as abnormal blood pressure and heart rate, reduced ability to perspire, constipation, bladder dysfunction (e.g., incontinence), and sexual dysfunction.
As the doctor was moving a metal rod from my toes and up my leg, the reality that I couldn't feel the rod below my shin left me puzzled. The same thing was done with my fingertips up my arm, at first I was relieved that I could feel the rod on my fingertips, but then I was shocked to realize the rod was freezing cold at the fold of my elbow, and I didn't know it was cold until then. Peripheral neuropathy the doctor notes and on to other test and a discussion on treating my recently increased POTS symptoms. The discussion on neuropathy would have to wait as I educated the doctor on how I was treated in the past and a bit of hand holding (my holding his hand) as I encouraged him in proceeding with my typical regimen to combat my symptoms. I left the office with a lab slip for blood work and new questions to my already long list of unknowns with this disease.
This new diagnosis wasn't a total surprise, I had suspected it for almost a year now. Many of my POTSy friends have shared their experiences with neuropathy, and my symptoms seemed to echo theirs. But I've always felt that until I had a diagnosis, I would keep on my rose colored glasses and pretend my symptoms were just something else! I never seemed to ask the question about neuropathy in the past, because it always seems like we're dealing with some other more life threatening symptom of this disease, or major hurdles such as wheel chairs and handicapped parking.
I've noticed that I've been given the truth of this disease in small bite size chunks. Heart rate and dizziness chunk, nausea and fatigue chunk, wheel chair and handicapped parking chunk, migraines and supplements chunk, and now new doctor, health plan and neuropathy chunk. Never more than I can chew, never more than I can handle. God knows me too well and because of that I'll trust that this too is as manageable as all the other chunks.
Still inspired, Michele
Proverbs 15:15
All the days of the afflicted are bad, but a cheerful heart has a continual feast.
Neuropathy may be associated with varying combinations of weakness, autonomic changes, and sensory changes. Loss of muscle bulk or fasciculations, a particular fine twitching of muscle, may be seen. Sensory symptoms encompass loss of sensation and "positive" phenomena including pain. Symptoms depend on the type of nerves affected (motor, sensory, or autonomic) and where the nerves are located in the body. One or more types of nerves may be affected. Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch. The autonomic nerve damage causes problems with involuntary functions leading to symptoms such as abnormal blood pressure and heart rate, reduced ability to perspire, constipation, bladder dysfunction (e.g., incontinence), and sexual dysfunction.
Saturday, November 6, 2010
Hard Choices
In the U.S.A. we have 4 choices in health care:
1.Medicare for the poor, disabled and retired.
2.HMO's the least expensive private insurance. Clients must use doctors within their network, a long and difficult referral process for specialists and many prescriptions are not covered.
3.PPO's the most expensive private insurance. Clients choose their doctors and most prescriptions are covered.
4.Pay for your own medical services out of pocket.
As a child my father taught me that the most important thing when providing for your family was to make sure you had insurance. Life insurance, car insurance and health insurance were all a must. Having a sister with Cerebral Palsy made the importance of having insurance a reality.
As a young mom I was faced with a difficult choice of staying home with my children or working to provide health insurance for my family (my former husbands employer didn't provide health insurance). I chose to work even though childcare took 75% of my salary, I was pretty much working for the insurance benefits!
I have been very fortunate over the past 20 years that my employer has provided me with a PPO with very minimum out of pocket expenses and great service. Last Spring I was faced with a very difficult decision. My PPO would now cost me $360 dollars a month to keep. Now add the fact that I was just informed that I would be taking a 20%pay cut (roughly $1,600 a month) and the decision was made for me. Unfortunately for me my budget is a bit tight because of my recent divorce and purchasing my home from my former husband at the top of the market. I couldn't sell my home if I wanted to because my home took a 33% drop in value because of the recession. Don't get me wrong, my former husband deserved every penny, just bum luck on the timing of the recession.
So here I am with an HMO and a bit concerned over the care I might receive. I tried very hard to be proactive. I chose a group that refers patients to my neurologist,as most POTSy's know a good neuro is the key to getting better. I also made my general practitioners appointment the first week that my new insurance was activated (which was a real hassel in itself). I had my prescriptions changed over, and one denied the first day grrrr.....! I requested the referral to my neuro and was told that this group doesn't refer to my neuro! I was told that they would attempt the referral process and that was the last I had heard about it.
I have been very blessed to have been in great health (for a POTSy)this past month, so I had not given the referral process another thought. Which was a huge mistake on my part. With teaching 32 students and a few "special" students I've been a bit preoccupied. I still have to laugh (rather than cry) at the irony, I have 12 more students and get paid 20% less. Now some would say you're working less hours, NOT. Prepping for 32 is much more time consuming, and hence I'm putting in more hours!
Well, all that stress and longer hours is finally catching up with my POTSy body. All week I've been watching the warning signs that my body was on the down swing, shortness of breath, very purple hands and feet and extreme fatigue, but I'm a push through it type, so I kept working. On Thursday my body said "that's enough, you need to rest!" So I requested a half day sub and went home and took a much needed nap. When I woke up I decided to call my new doctor and check on my referral. I was told it was denied. Being too sick to deal with the stress of making numerous phone calls I called it a night.
On Friday during my lunch I called the patient advocate with my HMO to find out the process of fighting my denial. My advocate was actually very nice after I explained the reason for choosing her group. She told me she would do a little investigating and get back to me. A few hours later she told me that my neuro was never on the referral list and gave me the group he was connected with. She told me it would be a long process to switch and that she would recommend seeing their neuro and hopefully get the ball rolling on the referral process.
I call the neuro that I have been approved for and attempt to make an appointment. I'm put on hold and then told my appointment date would be December 2nd. I tell them I'll take the next available appointment, and I'm told that December 2nd is the next available! My voice goes up an octive and I explain that I have a rare disease and I can feel my body getting ready to shut down, can they please fit me in somewhere? I'm told "So sorry, this is the best I can do". I become panicky, because I know I'm on the road for a trip to the ER and an unwanted vacation in a hospital room without a view! In a shaky voice I ask the poor man on the other end of the line "So if I end up in the hospital who do I tell them my neuro is?", he responds, "You don't have a neuro, I'm sure they have someone in the hospital there who can help you." I start laughing hysterically (I'm sure at this point the man must have though I needed a psychologist and not a neuro). He confirmed my appointment time for December 2nd, and quickly got off the phone with me.
So here I sit, without a neuro, feeling very POTSyish and abandoned by my insurance company. What's this POTSy girl to do? Those of you who have shared the past four years with me know that God has carried me through a difficult divorce miraculously. He's helped me recover from an eating disorder that consummed every thought. He has comforted me through the death of my father and He gave me a quick POTS diagnosis and an amazing neuro. He will carry me through this bump in the road as well. I will give this to God and use the wisdom and resources He has provided me to get through this. This is nothing compared to losing the love of my life through a painful divorce.
Still inspired,
Michele
What would difficulties be without my favorite verse.
Jeremiah 29:11
I know the plans I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.
1.Medicare for the poor, disabled and retired.
2.HMO's the least expensive private insurance. Clients must use doctors within their network, a long and difficult referral process for specialists and many prescriptions are not covered.
3.PPO's the most expensive private insurance. Clients choose their doctors and most prescriptions are covered.
4.Pay for your own medical services out of pocket.
As a child my father taught me that the most important thing when providing for your family was to make sure you had insurance. Life insurance, car insurance and health insurance were all a must. Having a sister with Cerebral Palsy made the importance of having insurance a reality.
As a young mom I was faced with a difficult choice of staying home with my children or working to provide health insurance for my family (my former husbands employer didn't provide health insurance). I chose to work even though childcare took 75% of my salary, I was pretty much working for the insurance benefits!
I have been very fortunate over the past 20 years that my employer has provided me with a PPO with very minimum out of pocket expenses and great service. Last Spring I was faced with a very difficult decision. My PPO would now cost me $360 dollars a month to keep. Now add the fact that I was just informed that I would be taking a 20%pay cut (roughly $1,600 a month) and the decision was made for me. Unfortunately for me my budget is a bit tight because of my recent divorce and purchasing my home from my former husband at the top of the market. I couldn't sell my home if I wanted to because my home took a 33% drop in value because of the recession. Don't get me wrong, my former husband deserved every penny, just bum luck on the timing of the recession.
So here I am with an HMO and a bit concerned over the care I might receive. I tried very hard to be proactive. I chose a group that refers patients to my neurologist,as most POTSy's know a good neuro is the key to getting better. I also made my general practitioners appointment the first week that my new insurance was activated (which was a real hassel in itself). I had my prescriptions changed over, and one denied the first day grrrr.....! I requested the referral to my neuro and was told that this group doesn't refer to my neuro! I was told that they would attempt the referral process and that was the last I had heard about it.
I have been very blessed to have been in great health (for a POTSy)this past month, so I had not given the referral process another thought. Which was a huge mistake on my part. With teaching 32 students and a few "special" students I've been a bit preoccupied. I still have to laugh (rather than cry) at the irony, I have 12 more students and get paid 20% less. Now some would say you're working less hours, NOT. Prepping for 32 is much more time consuming, and hence I'm putting in more hours!
Well, all that stress and longer hours is finally catching up with my POTSy body. All week I've been watching the warning signs that my body was on the down swing, shortness of breath, very purple hands and feet and extreme fatigue, but I'm a push through it type, so I kept working. On Thursday my body said "that's enough, you need to rest!" So I requested a half day sub and went home and took a much needed nap. When I woke up I decided to call my new doctor and check on my referral. I was told it was denied. Being too sick to deal with the stress of making numerous phone calls I called it a night.
On Friday during my lunch I called the patient advocate with my HMO to find out the process of fighting my denial. My advocate was actually very nice after I explained the reason for choosing her group. She told me she would do a little investigating and get back to me. A few hours later she told me that my neuro was never on the referral list and gave me the group he was connected with. She told me it would be a long process to switch and that she would recommend seeing their neuro and hopefully get the ball rolling on the referral process.
I call the neuro that I have been approved for and attempt to make an appointment. I'm put on hold and then told my appointment date would be December 2nd. I tell them I'll take the next available appointment, and I'm told that December 2nd is the next available! My voice goes up an octive and I explain that I have a rare disease and I can feel my body getting ready to shut down, can they please fit me in somewhere? I'm told "So sorry, this is the best I can do". I become panicky, because I know I'm on the road for a trip to the ER and an unwanted vacation in a hospital room without a view! In a shaky voice I ask the poor man on the other end of the line "So if I end up in the hospital who do I tell them my neuro is?", he responds, "You don't have a neuro, I'm sure they have someone in the hospital there who can help you." I start laughing hysterically (I'm sure at this point the man must have though I needed a psychologist and not a neuro). He confirmed my appointment time for December 2nd, and quickly got off the phone with me.
So here I sit, without a neuro, feeling very POTSyish and abandoned by my insurance company. What's this POTSy girl to do? Those of you who have shared the past four years with me know that God has carried me through a difficult divorce miraculously. He's helped me recover from an eating disorder that consummed every thought. He has comforted me through the death of my father and He gave me a quick POTS diagnosis and an amazing neuro. He will carry me through this bump in the road as well. I will give this to God and use the wisdom and resources He has provided me to get through this. This is nothing compared to losing the love of my life through a painful divorce.
Still inspired,
Michele
What would difficulties be without my favorite verse.
Jeremiah 29:11
I know the plans I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.
Sunday, October 24, 2010
POTS: Tornado warning!
My life with POTS has left me feeling like I'm living the movie "The Wizard of Oz". One day I'm struggling with POTS symptoms, that resembles the bleak black and white world of Kansas. The next day I'm almost symptom free and living in the joyful, colorful world of Oz. After two years of having POTS, I'm still surprised by the fickleness of my symptoms. It often reminds me of a tornado destroying one house and the house next door is still completely in tact. The randomness of the destruction is a mystery.
The POTS tornado seems to skip over me at work! I've often shared how blessed and fortunate I am to be able to teach. I'm awed and amazed that I'm able to walk to my car at the end of each day. Teaching kindergarten is no easy task, most of my students have been the center of their families universe all their lives (as they should be). Now place those precious five year olds in a classroom with 31 other five year olds and only one teacher to meet all their needs and it's quite a shock to their little systems. Now add the hundred or so standards that the state of California requires me to teach them, the shoe tying, the emotional meltdowns, the glitches in the schedule and the daunting task of preparing them to be the best students they can possibly be is overwhelming at times. Being able to complete my day is nothing short of a miracle, so I celebrate this accomplishment daily, knowing God must have a purpose for me in this place.
The POTS tornado seems to touch down for odd reasons as well. Like grocery shopping (which I love), I'm always completely wiped out, exhausted and very symptomatic after every trip. POTS seems to strike during worship time also, singing leaves me out of breath and dizzy. The loudness of the worship band does odd things to my heart rate and adrenaline, I've learned to sit at the back of the church which has helped quite a bit. It can be so frustrating, today I went to the front of the church to pray with a friend (my heart wanted to be there so badly), the band music was roaring and so were my POTS symptoms. It was so distracting that I started to become angry, I was able to remind myself as to why I was there, and put my mind back on track and finish what I was called to do in the first place.
I often wonder at the randomness of the symptoms. Why can I do such a strenuous job such as teaching and yet shopping, singing and worship music sends me crashing. I'm learning to be thankful for what I can do, and ask God for answers as to what I can't do. If I listen hard enough I'm sure He'll answer!
Inspired and learning,
Michele
The POTS tornado seems to skip over me at work! I've often shared how blessed and fortunate I am to be able to teach. I'm awed and amazed that I'm able to walk to my car at the end of each day. Teaching kindergarten is no easy task, most of my students have been the center of their families universe all their lives (as they should be). Now place those precious five year olds in a classroom with 31 other five year olds and only one teacher to meet all their needs and it's quite a shock to their little systems. Now add the hundred or so standards that the state of California requires me to teach them, the shoe tying, the emotional meltdowns, the glitches in the schedule and the daunting task of preparing them to be the best students they can possibly be is overwhelming at times. Being able to complete my day is nothing short of a miracle, so I celebrate this accomplishment daily, knowing God must have a purpose for me in this place.
The POTS tornado seems to touch down for odd reasons as well. Like grocery shopping (which I love), I'm always completely wiped out, exhausted and very symptomatic after every trip. POTS seems to strike during worship time also, singing leaves me out of breath and dizzy. The loudness of the worship band does odd things to my heart rate and adrenaline, I've learned to sit at the back of the church which has helped quite a bit. It can be so frustrating, today I went to the front of the church to pray with a friend (my heart wanted to be there so badly), the band music was roaring and so were my POTS symptoms. It was so distracting that I started to become angry, I was able to remind myself as to why I was there, and put my mind back on track and finish what I was called to do in the first place.
I often wonder at the randomness of the symptoms. Why can I do such a strenuous job such as teaching and yet shopping, singing and worship music sends me crashing. I'm learning to be thankful for what I can do, and ask God for answers as to what I can't do. If I listen hard enough I'm sure He'll answer!
Inspired and learning,
Michele
Saturday, October 16, 2010
Living the Moment
Before my POTS diagnosis I woke up in the morning, got ready for work, worked hard, looked forward to the end of my day, and counted the days or hours for the weekend to hit. I loved my career and enjoyed what I did every day, but I looked forward to my time away from work. I often see TGIF as someones status on FB, I've never seen a TGIM. Work is some place to make money to pay the bills and do the things you enjoy outside of work.
Work became something completely different for me after my POTS diagnosis. When I was hosplitalized I could barely walk from my bed to the bathroom without being completely exhausted, dizzy, out of breath and as white as a sheet. I became a "House" episode. My heart,lungs and brain all checked out normal (yes, even my brain). It wasn't until I told the doctors to check my heart rate and blood pressure laying down and standing up did my diagnosis become obvious. I was told my condition is rare, the treatments varied in each patient, and I may or may not recover. I didn't realize at the time how scary those statements should be to me. I was given several meds to try (some worked and some didn't), and a short list of things to avoid. The list made it pretty obvious that mornings were gong to be difficult, and I still chuckle at one of the items : Avoid having a b.m. in the morning. How am I suppose to do that, I've done my big business every morning for as long as I can remember! Most of my education I picked up from other POTSies, I don't know what I'd do without their knowledge and support! When I first returned to work there was a deep appreciation for the fact that I could go to work. Work no longer was I place I had to go to five days a week, but a place I get to go to five days a week. Believe me when I say it isn't easy. Every day I wake up nauseated, dizzy, and exhausted.
During this journey, I became connected with many amazing people who share this wonderful diagnosis. What I discovered was the majority of them have it so much worse than I do. Daily migraines, fainting (I have never fainted, only feel close to fainting), severe digestive issues, severe pain and fatigue, tachycardia and bradycardia, and weak swollen and discolored limbs. My friends can't work, and want to work so badly. They deal with sever chronic illness every minute of their lives, and we complain about a rough day at work.
In the beginning I had a deep appreciation for being able to work, but that has grown into something much more. I'm learning to appreciate every minute. Every word I speak, every communication I acknowledge can leave a life changing experience in someone I touch, no matter how small the event may seem. Even in chaos and exhaustion I have a choice as to how I use it. Sometimes when my classroom is being unruly, I'll close my eyes for a second and appreciate the fact that life is happening around me. The rules in my room are important, but how I enforce those rules is just as important. I'm looking less at the clock as a way to measure the end of my day, and more as a measure of what more I can do in the time I have left.
I've been given twelve more students in my class, and at first my attitude was this is wrong, I can't do it, and I'm not getting paid enough to do this. What I realized is that I get to have twelve more students in my room, they will change who I am and how I teach, and I have the opportunity to change and affect who they are. Is it wrong, YES! Developmentally kindergarten and first grade should only have 20 students. I can't change the state budget, but I can accept what I have and make the most of this opportunity.
I've also seen a change in my attitude about parent-teacher conferences. These conferences add two to three hours to my day. For those of you who are not in education, I get paid for a 6.5 hour day, not for eleven or twelve. I'm not given a stipend or extra pay, it's part of my job description. I've always done this part of my job grudgingly. A week of hard labor, and the hope of getting them complete without any parental conflicts. But this year was so different. I have such a supportive group of parents, and I love my students, so I couldn't wait to spend some one on one time with these amazing parents. This time I enjoyed the insight I received from my parents about my students, and feeling like we had connected as a team to provide success for their students was a joy! Last night I posted "joyfully exhausted" as my status because I knew every moment was well invested and worth the exhaustion I felt at the end of my day.
I guess my target audience would be those who are relatively healthy. Work doesn't have to be a prison sentence, "time served". There are people who are chronically ill who would give their right arm to be in your shoes. Try to think more about the time at work as opportunities to make a difference, and the people around you as precious moments to make a positive difference in someone. Many of my friends are alone and would love to be able to touch someones life (for some talking makes POTSies out of breath and dizzy, including myself).
For my POTSy friends, try not to waste precious time focusing on the can'ts. Dysautonomia is a thief, and has stolen our health and many of the things we enjoy in life. You have family and friends that need your heart, compassion and moral strength. Please don't let this disease steal the joy out of the moments you spend with others, make each moment count, because to be honest there's always someone out there who has it allot worse than you do.
Always inspired,
Michele
Psalms 126:5
Those who sow in tears shall reap with joyful shouting.
Work became something completely different for me after my POTS diagnosis. When I was hosplitalized I could barely walk from my bed to the bathroom without being completely exhausted, dizzy, out of breath and as white as a sheet. I became a "House" episode. My heart,lungs and brain all checked out normal (yes, even my brain). It wasn't until I told the doctors to check my heart rate and blood pressure laying down and standing up did my diagnosis become obvious. I was told my condition is rare, the treatments varied in each patient, and I may or may not recover. I didn't realize at the time how scary those statements should be to me. I was given several meds to try (some worked and some didn't), and a short list of things to avoid. The list made it pretty obvious that mornings were gong to be difficult, and I still chuckle at one of the items : Avoid having a b.m. in the morning. How am I suppose to do that, I've done my big business every morning for as long as I can remember! Most of my education I picked up from other POTSies, I don't know what I'd do without their knowledge and support! When I first returned to work there was a deep appreciation for the fact that I could go to work. Work no longer was I place I had to go to five days a week, but a place I get to go to five days a week. Believe me when I say it isn't easy. Every day I wake up nauseated, dizzy, and exhausted.
During this journey, I became connected with many amazing people who share this wonderful diagnosis. What I discovered was the majority of them have it so much worse than I do. Daily migraines, fainting (I have never fainted, only feel close to fainting), severe digestive issues, severe pain and fatigue, tachycardia and bradycardia, and weak swollen and discolored limbs. My friends can't work, and want to work so badly. They deal with sever chronic illness every minute of their lives, and we complain about a rough day at work.
In the beginning I had a deep appreciation for being able to work, but that has grown into something much more. I'm learning to appreciate every minute. Every word I speak, every communication I acknowledge can leave a life changing experience in someone I touch, no matter how small the event may seem. Even in chaos and exhaustion I have a choice as to how I use it. Sometimes when my classroom is being unruly, I'll close my eyes for a second and appreciate the fact that life is happening around me. The rules in my room are important, but how I enforce those rules is just as important. I'm looking less at the clock as a way to measure the end of my day, and more as a measure of what more I can do in the time I have left.
I've been given twelve more students in my class, and at first my attitude was this is wrong, I can't do it, and I'm not getting paid enough to do this. What I realized is that I get to have twelve more students in my room, they will change who I am and how I teach, and I have the opportunity to change and affect who they are. Is it wrong, YES! Developmentally kindergarten and first grade should only have 20 students. I can't change the state budget, but I can accept what I have and make the most of this opportunity.
I've also seen a change in my attitude about parent-teacher conferences. These conferences add two to three hours to my day. For those of you who are not in education, I get paid for a 6.5 hour day, not for eleven or twelve. I'm not given a stipend or extra pay, it's part of my job description. I've always done this part of my job grudgingly. A week of hard labor, and the hope of getting them complete without any parental conflicts. But this year was so different. I have such a supportive group of parents, and I love my students, so I couldn't wait to spend some one on one time with these amazing parents. This time I enjoyed the insight I received from my parents about my students, and feeling like we had connected as a team to provide success for their students was a joy! Last night I posted "joyfully exhausted" as my status because I knew every moment was well invested and worth the exhaustion I felt at the end of my day.
I guess my target audience would be those who are relatively healthy. Work doesn't have to be a prison sentence, "time served". There are people who are chronically ill who would give their right arm to be in your shoes. Try to think more about the time at work as opportunities to make a difference, and the people around you as precious moments to make a positive difference in someone. Many of my friends are alone and would love to be able to touch someones life (for some talking makes POTSies out of breath and dizzy, including myself).
For my POTSy friends, try not to waste precious time focusing on the can'ts. Dysautonomia is a thief, and has stolen our health and many of the things we enjoy in life. You have family and friends that need your heart, compassion and moral strength. Please don't let this disease steal the joy out of the moments you spend with others, make each moment count, because to be honest there's always someone out there who has it allot worse than you do.
Always inspired,
Michele
Psalms 126:5
Those who sow in tears shall reap with joyful shouting.
Saturday, October 9, 2010
I'm a Super Freak, Super Freak, I'm super Freaky!
I'm a super freak! I would have downloaded Rick Jame's Super Freak, but I'm not THAT KIND of super freak. The song is kind of fun and catchy though.
It's Friday, and it has been a busy week. Back to school night, unruly students, PTA meeting, picture day, and alphabet party to end it all. I had plenty of volunteers, and the students had a blast using foamy letters to make A,B,C hats, letter name necklaces, stamping A,B,C's on vests, shaving cream writing and play-dough letters. But managing time, behavior, checking on groups and taking photographs can be very tiring. Thankfully all went well the rest of the day, but I was pooped.
To finish off the day I had a doctors appointment with my new doctor. I had to change insurance plans because of an increase of $350 on my former and much better plan. I was very nervous going from the top of the line insurance to the bottom. It's scary when your healthy, add having a rare chronic disease and it can be a nightmare. The new doctor was very nice. Then I told her I had dysautonomia and she replied "You have what?". I said it a second time, and she made a pretty good guess at what it is by it's name, which is a better response than I'm use to getting. I gave her my symptoms list along with the medications that work. While I was sitting on the examining table my feet turned a hideous shade of purple (my feet have a tendency to show off on the examining table), and her eyes popped out and she said "Is this normal?" I giggled and said yes, and apologized for not including that symptom in the list I just recited. She informed me that I should get some compression stockings, and I giggled again and said "I do wear them, but I'm a bit naked right now." She giggled too, so we're off to a good start. At least she gets my bazaar sense of humor. I requested a referral to my neurologist who specializes in POTS, and she informed me that it's next to impossible to get a referral outside their building. My sole purpose in choosing that medical group was that they were the only one in my plan to refer to my specialist. So I guess I'm on the road for some red tape and hassles. Oh well, what's new.
So I get home and I'm feeling more fatigued than usual. I take off my sweater, and my hands and arms are red, which is a new thing for me (my hands are usually red and purple and that's all). To top it off my arms are blotchy and spotty! I take off my shoes, and notice my feet and lower legs look the same. I decide to take it easy and I stick a frozen dinner inside the microwave. In 5 minutes and no effort dinner is ready. I watch "Say Yes to the Dress" and decide to call it a night. I get ready for my nice cool bath and as I step into the tub I notice my whole body has blotchy red spots "Nice"! As I dry off my swollen purple feet and my blotchy body, I start crying. I'M A FREAK! Then my wonderful sense of humor comes back and Super Freak begins to play in my head, and I feel a bit better. When I put my socks on I notice my feet are so red that they can be seen through my socks. I decide to show my daughter my freakiness, and I tell her that I'M A FREAK! She giggles and tells me "No mom, you're special!". Special is good, and a much more positive way to see things. So "I'm super special, super special, I'm super special now, da-da-da-dum, da-dum, da-dum, da-da-da-dum, da-dum, da-dum".
Inspired,
Michele
P.S. It's so funny my week ended this way. On Wednesday I actually thought I might be in remission, I felt almost normal Sunday through Thursday, I hadn't felt that good since before POTS. Funny how quickly things can change, just gotta role with the punches.
Matt:10:8
Heal the sick, raise the dead, cleanse the lepers, cast out demons, freely you have received, freely give.
It's Friday, and it has been a busy week. Back to school night, unruly students, PTA meeting, picture day, and alphabet party to end it all. I had plenty of volunteers, and the students had a blast using foamy letters to make A,B,C hats, letter name necklaces, stamping A,B,C's on vests, shaving cream writing and play-dough letters. But managing time, behavior, checking on groups and taking photographs can be very tiring. Thankfully all went well the rest of the day, but I was pooped.
To finish off the day I had a doctors appointment with my new doctor. I had to change insurance plans because of an increase of $350 on my former and much better plan. I was very nervous going from the top of the line insurance to the bottom. It's scary when your healthy, add having a rare chronic disease and it can be a nightmare. The new doctor was very nice. Then I told her I had dysautonomia and she replied "You have what?". I said it a second time, and she made a pretty good guess at what it is by it's name, which is a better response than I'm use to getting. I gave her my symptoms list along with the medications that work. While I was sitting on the examining table my feet turned a hideous shade of purple (my feet have a tendency to show off on the examining table), and her eyes popped out and she said "Is this normal?" I giggled and said yes, and apologized for not including that symptom in the list I just recited. She informed me that I should get some compression stockings, and I giggled again and said "I do wear them, but I'm a bit naked right now." She giggled too, so we're off to a good start. At least she gets my bazaar sense of humor. I requested a referral to my neurologist who specializes in POTS, and she informed me that it's next to impossible to get a referral outside their building. My sole purpose in choosing that medical group was that they were the only one in my plan to refer to my specialist. So I guess I'm on the road for some red tape and hassles. Oh well, what's new.
So I get home and I'm feeling more fatigued than usual. I take off my sweater, and my hands and arms are red, which is a new thing for me (my hands are usually red and purple and that's all). To top it off my arms are blotchy and spotty! I take off my shoes, and notice my feet and lower legs look the same. I decide to take it easy and I stick a frozen dinner inside the microwave. In 5 minutes and no effort dinner is ready. I watch "Say Yes to the Dress" and decide to call it a night. I get ready for my nice cool bath and as I step into the tub I notice my whole body has blotchy red spots "Nice"! As I dry off my swollen purple feet and my blotchy body, I start crying. I'M A FREAK! Then my wonderful sense of humor comes back and Super Freak begins to play in my head, and I feel a bit better. When I put my socks on I notice my feet are so red that they can be seen through my socks. I decide to show my daughter my freakiness, and I tell her that I'M A FREAK! She giggles and tells me "No mom, you're special!". Special is good, and a much more positive way to see things. So "I'm super special, super special, I'm super special now, da-da-da-dum, da-dum, da-dum, da-da-da-dum, da-dum, da-dum".
Inspired,
Michele
P.S. It's so funny my week ended this way. On Wednesday I actually thought I might be in remission, I felt almost normal Sunday through Thursday, I hadn't felt that good since before POTS. Funny how quickly things can change, just gotta role with the punches.
Matt:10:8
Heal the sick, raise the dead, cleanse the lepers, cast out demons, freely you have received, freely give.
Sunday, October 3, 2010
My Favorite Discoveries
I thought I would designate a post to some of the things I've discovered that have helped me cope with having POTS. Some are personal life lessons, and some can be purchased at the store or on line.
My very favorite thing is my Mio heart rate monitor watch. For over a year I didn't quite know what my heart was doing, and unfortunately I confused bradycardia symptoms (low heart rate) with tachycardia symptoms (high heart rate). Knowing what my heart is doing, and how bad it really is has given me peace of mind.
My ice vest is one of the ugliest pieces of clothing I own, but also one of the most important. My body doesn't respond to temperature like the rest of the world. My body temperature rises and falls in extreme weather. I purchased the Artic Heat ice vest because it's light weight and doesn't soak my clothing. It was a bit expensive but definitely worth it.
For a year I carried packets of salt with me everywhere, ewww gross! I discovered from some helpful POTSies that salt tablets are way better. Please check with your doctor about dosage and whether this is a good option for you. And don't forget plenty of water to go with it.
I spent the first year of my POTS diagnosis in a continuous state of nausea. I thought it might be the medications I was on. I discovered by accident that if I ate small meals all day that the nausea only exists in the morning hours.
Finding the right medication combination can be a long and frustrating road. In the beginning of my medication trial it was very frightening. The first medication they tried made my heart raced so high, that after I vomited I was on watch for 24 hours. The medications I'm on now had such bad side effects that I became suicidal. The sad thing was, that the medication worked very well with my POTS symptoms, and they didn't have any alternative medications to give me. I was forced to live through the emotional battle or become bed ridden and an invalid for the rest of my life. It took a little over a year, but I'm now able to take my medications without the scary side effects. What a difficult choice that was! Be patient, and be in constant communication with your doctor.
Living with POTS is like living with the Blob, the symptoms change from day to day, and sometimes it's hard to tell the difference from a "normal" illnesses and POTS symptoms. Being connected with a website support group is very helpful. People who share this unique disease usually can answer questions you have. Often times reading posts from others will shed some light on symptoms that I have that I didn't know were POTS related. People who have lived with POTS often have a wealth of information that our doctors may not have tried. And always seek the advice of your doctor when you hear about something new.
Like I said in the previous paragraph, living with POTS is like living with the Blob. Many of us share similar symptoms but our bodies react to medications differently. Some people with POTS are very symptomatic and are still on the road of finding something that works for them, and others have found treatments that allow them to live close to normal lives. Remember everyone is different.
I often experience survivors guilt, feeling bad for those who have it so much worse than I do. But I have learned to appreciate what I can do, because there are so many who have it worse. Even if I was living with the worse case scenario of POTS, it still would be better than paralysis, being a burn victim or so many other debilitating diseases. POTS has taken so much away, but I do have a choice as to how I deal with that loss. I've learned to focus on what I can do, and not on what I can't.
POTS has friends, don't be surprised if you become scent sensitive or intolerant. I became very dizzy at a bon fire at church one day, who knew? Sound sensitivity was very surprising, my heart rate went through the roof listening to very loud praise music at church. Ehler Danlos Syndrome, Raynauds, Irritable Bowel Syndrome, and Lupus usually go hand in hand with POTS. Just be prepared for anything.
I try to keep my friends and family in the loop of how things are going for me, but I'm also learning that it's a process for them too. They have lost the Michele they knew well, and they have been given a different Michele in it's place. Don't forget to give them some grace, and communicate what you need from them.
I have been a servant most of my life, serving and helping are things I enjoy. POTS has made that difficult. I've learned to accept help and ask for help, neither of these come natural. I've learned to accept that the warm fuzzy feeling I would get from helping others is now happening to those who help and serve me. God is at work in those around me, and I need to sit back and get out of the way.
When writing my blog, I try really hard not to pound people over the head with my faith, I'm more of a love people to Jesus, than a hit people over the head with a bible type. Being a Christian is at the core of who I am, and not sharing how God has made a difference in dealing with POTS would be denying who I am. So hear it goes, I trust that I have POTS for a reason, I believe that God uses my circumstances for His purposes. I have seen God work miracles through my POTS diagnosis, and I've seen God change my heart through the difficult circumstances. I'm not saying this is easy, there are days when I'm frustrated or angry with things that happen to me with POTS, but God gave me feelings for a reason and I'm learning it's OK to ask "Why this God?", and I'm learning to wait patiently for answers. Because He always answers, maybe not in my timing, but in His.
Truly inspired,
Michele
Jeremiah 29:11
For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.
My life verse.
My very favorite thing is my Mio heart rate monitor watch. For over a year I didn't quite know what my heart was doing, and unfortunately I confused bradycardia symptoms (low heart rate) with tachycardia symptoms (high heart rate). Knowing what my heart is doing, and how bad it really is has given me peace of mind.
My ice vest is one of the ugliest pieces of clothing I own, but also one of the most important. My body doesn't respond to temperature like the rest of the world. My body temperature rises and falls in extreme weather. I purchased the Artic Heat ice vest because it's light weight and doesn't soak my clothing. It was a bit expensive but definitely worth it.
For a year I carried packets of salt with me everywhere, ewww gross! I discovered from some helpful POTSies that salt tablets are way better. Please check with your doctor about dosage and whether this is a good option for you. And don't forget plenty of water to go with it.
I spent the first year of my POTS diagnosis in a continuous state of nausea. I thought it might be the medications I was on. I discovered by accident that if I ate small meals all day that the nausea only exists in the morning hours.
Finding the right medication combination can be a long and frustrating road. In the beginning of my medication trial it was very frightening. The first medication they tried made my heart raced so high, that after I vomited I was on watch for 24 hours. The medications I'm on now had such bad side effects that I became suicidal. The sad thing was, that the medication worked very well with my POTS symptoms, and they didn't have any alternative medications to give me. I was forced to live through the emotional battle or become bed ridden and an invalid for the rest of my life. It took a little over a year, but I'm now able to take my medications without the scary side effects. What a difficult choice that was! Be patient, and be in constant communication with your doctor.
Living with POTS is like living with the Blob, the symptoms change from day to day, and sometimes it's hard to tell the difference from a "normal" illnesses and POTS symptoms. Being connected with a website support group is very helpful. People who share this unique disease usually can answer questions you have. Often times reading posts from others will shed some light on symptoms that I have that I didn't know were POTS related. People who have lived with POTS often have a wealth of information that our doctors may not have tried. And always seek the advice of your doctor when you hear about something new.
Like I said in the previous paragraph, living with POTS is like living with the Blob. Many of us share similar symptoms but our bodies react to medications differently. Some people with POTS are very symptomatic and are still on the road of finding something that works for them, and others have found treatments that allow them to live close to normal lives. Remember everyone is different.
I often experience survivors guilt, feeling bad for those who have it so much worse than I do. But I have learned to appreciate what I can do, because there are so many who have it worse. Even if I was living with the worse case scenario of POTS, it still would be better than paralysis, being a burn victim or so many other debilitating diseases. POTS has taken so much away, but I do have a choice as to how I deal with that loss. I've learned to focus on what I can do, and not on what I can't.
POTS has friends, don't be surprised if you become scent sensitive or intolerant. I became very dizzy at a bon fire at church one day, who knew? Sound sensitivity was very surprising, my heart rate went through the roof listening to very loud praise music at church. Ehler Danlos Syndrome, Raynauds, Irritable Bowel Syndrome, and Lupus usually go hand in hand with POTS. Just be prepared for anything.
I try to keep my friends and family in the loop of how things are going for me, but I'm also learning that it's a process for them too. They have lost the Michele they knew well, and they have been given a different Michele in it's place. Don't forget to give them some grace, and communicate what you need from them.
I have been a servant most of my life, serving and helping are things I enjoy. POTS has made that difficult. I've learned to accept help and ask for help, neither of these come natural. I've learned to accept that the warm fuzzy feeling I would get from helping others is now happening to those who help and serve me. God is at work in those around me, and I need to sit back and get out of the way.
When writing my blog, I try really hard not to pound people over the head with my faith, I'm more of a love people to Jesus, than a hit people over the head with a bible type. Being a Christian is at the core of who I am, and not sharing how God has made a difference in dealing with POTS would be denying who I am. So hear it goes, I trust that I have POTS for a reason, I believe that God uses my circumstances for His purposes. I have seen God work miracles through my POTS diagnosis, and I've seen God change my heart through the difficult circumstances. I'm not saying this is easy, there are days when I'm frustrated or angry with things that happen to me with POTS, but God gave me feelings for a reason and I'm learning it's OK to ask "Why this God?", and I'm learning to wait patiently for answers. Because He always answers, maybe not in my timing, but in His.
Truly inspired,
Michele
Jeremiah 29:11
For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.
My life verse.
Subscribe to:
Posts (Atom)
