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
Sunday, October 24, 2010
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.
Monday, September 27, 2010
HOT, Hot, hot!
It was 109 degrees in beautiful Southern California today! I have been dreading this weather all year. I thought maybe the wonderfully cool summer was a prequel to an autumn closer to that of the autumn felt by the North Eastern US. But I was W-R-O-N-G wrong!!! I had already switched my boring summer wardrobe with my delightful winter clothes. Hello soft cashmere, leather boots and turtlenecks, good bye drab cotton t-shirts and leggings. I had my heart set for savory soups and delicious stews and roasts, enough with the fish, chicken and rabbit food!
I knew the heat was coming. One of the symptoms of POTS is temperature intolerance. I've often described the way I feel in the heat, to the scene in Harry Potter Chamber of Secrets, when Harry takes Pollyjuice Potion and his body goes through a very uncomfortable transformation. I feel like my blood is bubbling, a strange fatigue and tingling sensation takes over my limbs, my heart rate rises, I get very dizzy, my temperature rises a couple degrees and I feel very panicky. When I feel that way, I need to find a cool place and cool off immediately. If I don't I end up on the ground and my body shuts down. This is always followed by a trip to the hospital. Oxygen, an IV and a day or two in bed will usually get me back to my old self. But this is obviously something I want to avoid. Nothing like a public display in front of my students, parents and colleagues to make me look incompetent.
I'm very blessed to have an air conditioned classroom. But there are other hurdles to jump outside the classroom, and that was what I dreaded most. Usually I'm a worrier, but I'm finally learning that worrying gets me nowhere, and I need to trust that God has this all under control, even if it ends up being my worse case scenario. I'm also learning to look ahead and plan for the things that might cause me trouble. Finally I'm learning it's OK to ask for help.
One of my concerns was patriotic observance. It's a wonderful time where the whole school assembles together to pledge the flag, sing a patriotic song, make school announcements and say the school pledge. It's a very moving and special time of the school day. It usually lasts ten to fifteen minutes. On a hot day, it's one of my most difficult times. I'm very fortunate to have the support of the first grade team, who have offered to help me out if I ever need it. So I felt confident that this time of the day would be covered, and sure enough my kindergarten team mate took over my class during that time.
I was also concerned about lunch time, picking up my students after lunch means walking in the heat. It doesn't sound so difficult until you consider that walking with five year olds is and adventure in itself! The chances of at least one student falling down is very high, add a pushing or poking student to the mix, along with someone taking cuts, and a simple two minute walk turns into a stressful ten minute escapade! I asked my kindergarten team mate to give me a hand again, and she was kind enough to help. I followed lunch with indoor P.E., and my students were very well behaved!
I finished the day indoors in the wonderfully air conditioned classroom. It's time to go home, nothing dangerous there, WRONG! Walking to my car in 110 degrees can feel like a walk through the Sahara Desert without water. Then try getting into a car that has been sitting in the the hot sun all day, and it's as bad as it can get. I've had to pull over because my symptoms became too dangerous to drive with. I knew my drive was going to be tough, so I was fortunate enough that my daughter agreed to come to my rescue. She gets to my car ten minutes before I leave, and cools off the car before I get there. The only problem I had was that the longer cooler route to my car was hotter than I expected, and my ice vest was completely melted and warm by the time I got to my car.
A little preplanning along with some help from those around me, and living with POTS isn't so bad!
Inspired,
Michele
Psalm 139:17-18
How precious also are Your thoughts to me O God! If I should count them, they would outnumber the sand. When I am awake, I am still with You.
I knew the heat was coming. One of the symptoms of POTS is temperature intolerance. I've often described the way I feel in the heat, to the scene in Harry Potter Chamber of Secrets, when Harry takes Pollyjuice Potion and his body goes through a very uncomfortable transformation. I feel like my blood is bubbling, a strange fatigue and tingling sensation takes over my limbs, my heart rate rises, I get very dizzy, my temperature rises a couple degrees and I feel very panicky. When I feel that way, I need to find a cool place and cool off immediately. If I don't I end up on the ground and my body shuts down. This is always followed by a trip to the hospital. Oxygen, an IV and a day or two in bed will usually get me back to my old self. But this is obviously something I want to avoid. Nothing like a public display in front of my students, parents and colleagues to make me look incompetent.
I'm very blessed to have an air conditioned classroom. But there are other hurdles to jump outside the classroom, and that was what I dreaded most. Usually I'm a worrier, but I'm finally learning that worrying gets me nowhere, and I need to trust that God has this all under control, even if it ends up being my worse case scenario. I'm also learning to look ahead and plan for the things that might cause me trouble. Finally I'm learning it's OK to ask for help.
One of my concerns was patriotic observance. It's a wonderful time where the whole school assembles together to pledge the flag, sing a patriotic song, make school announcements and say the school pledge. It's a very moving and special time of the school day. It usually lasts ten to fifteen minutes. On a hot day, it's one of my most difficult times. I'm very fortunate to have the support of the first grade team, who have offered to help me out if I ever need it. So I felt confident that this time of the day would be covered, and sure enough my kindergarten team mate took over my class during that time.
I was also concerned about lunch time, picking up my students after lunch means walking in the heat. It doesn't sound so difficult until you consider that walking with five year olds is and adventure in itself! The chances of at least one student falling down is very high, add a pushing or poking student to the mix, along with someone taking cuts, and a simple two minute walk turns into a stressful ten minute escapade! I asked my kindergarten team mate to give me a hand again, and she was kind enough to help. I followed lunch with indoor P.E., and my students were very well behaved!
I finished the day indoors in the wonderfully air conditioned classroom. It's time to go home, nothing dangerous there, WRONG! Walking to my car in 110 degrees can feel like a walk through the Sahara Desert without water. Then try getting into a car that has been sitting in the the hot sun all day, and it's as bad as it can get. I've had to pull over because my symptoms became too dangerous to drive with. I knew my drive was going to be tough, so I was fortunate enough that my daughter agreed to come to my rescue. She gets to my car ten minutes before I leave, and cools off the car before I get there. The only problem I had was that the longer cooler route to my car was hotter than I expected, and my ice vest was completely melted and warm by the time I got to my car.
A little preplanning along with some help from those around me, and living with POTS isn't so bad!
Inspired,
Michele
Psalm 139:17-18
How precious also are Your thoughts to me O God! If I should count them, they would outnumber the sand. When I am awake, I am still with You.
Thursday, September 23, 2010
"Normal" sick leads to coughing, barf fest and a side bar of piddle pup!
OK, so I was wrong to be excited about being "normal" sick! How could I have possibly thought that being "normal" sick wouldn't trigger my POTS symptoms. You would have thought that with the experiences of having a type 1 diabetic daughter, that I would have known better. I guess getting caught up in having some degree of a "normal" illness must have caused a short episode of brain fog.
Well the novelty of being "normal" sick wore off within 12 hours. "Normal sick" entails abnormal amounts of bodily fluid excreting from almost every part of the head that has holes, which unfortunately triggered some part of my stomach to rebel without warning the first night. There's nothing like the shock of waking up to a barf fest in the middle of the night. Then the wonderful realization that I can't get out of bed because of the extreme dizziness of POTS. For some reason my sense of humor seems to always kick in at times like these, and I had to giggle at the thought that just 12 hours ago I was actually joyful over having this "normal" illness! My body found it's payback for laughing at something I should have treated with a little more dread and respect! Well the adrenaline rush from being sick and the loss of my sleeping meds makes the evening a wash.
The next day feels like a normal sick day with the added bonus of worsening POTS symptoms from losing my POTS meds the night before. That night I head for bed with hopes and prayers to have a night that doesn't resemble the night before. My prayers are answered LOL, this night is definitely different from the night before. I wake up coughing, the kind of cough that feels like hairy little creatures are running along my air passages. The coughing gets out of control, and next thing I know I'm peeing like a puppy who's excited to see its owner, hmmm, no wonder I can relate so well to my kindergartners! So I head for the bathroom to change clothes and finish what I started. I'm all cleaned up, I head for the kitchen looking for something safe I can take to relieve my cough, when a second coughing jag begins. The room begins to spin, and a second set of clothing has just bit the dust. Now I'm really mad! There shouldn't be an ounce of fluid to create this problem 30 seconds after leaving the restroom, come on! I realize that it's just my body's sense of humor reminding me that it's in control, and until I crown it as my master, it will continue to torment and remind me that it is the boss of me! So I surrender control back to my body, and I promise never to take lightly any medical condition that crosses my path.
I know I'm not the only girl around who has "lost it", I do have friends who have confidentially shared (I promise I won't rat you out!). But I have to know, are girls the only ones with this problem, do guys suffer from this too? I'm sure I'll never get an answer to that question (who would admit to something as humbling as tinkling in your pants, oh yah, I just did lol), but then again, maybe they paid their dews during puberty! Well,it's kegel time!
Humbled and learning,
Michele
Job 2:10
Shall we indeed accept good from God and not accept adversity? In all this Job did not sin with his lips.
Lesson: All month God has blessed me with help in my room every single day! I will accept adversity in the same manner as the blessings.
Well the novelty of being "normal" sick wore off within 12 hours. "Normal sick" entails abnormal amounts of bodily fluid excreting from almost every part of the head that has holes, which unfortunately triggered some part of my stomach to rebel without warning the first night. There's nothing like the shock of waking up to a barf fest in the middle of the night. Then the wonderful realization that I can't get out of bed because of the extreme dizziness of POTS. For some reason my sense of humor seems to always kick in at times like these, and I had to giggle at the thought that just 12 hours ago I was actually joyful over having this "normal" illness! My body found it's payback for laughing at something I should have treated with a little more dread and respect! Well the adrenaline rush from being sick and the loss of my sleeping meds makes the evening a wash.
The next day feels like a normal sick day with the added bonus of worsening POTS symptoms from losing my POTS meds the night before. That night I head for bed with hopes and prayers to have a night that doesn't resemble the night before. My prayers are answered LOL, this night is definitely different from the night before. I wake up coughing, the kind of cough that feels like hairy little creatures are running along my air passages. The coughing gets out of control, and next thing I know I'm peeing like a puppy who's excited to see its owner, hmmm, no wonder I can relate so well to my kindergartners! So I head for the bathroom to change clothes and finish what I started. I'm all cleaned up, I head for the kitchen looking for something safe I can take to relieve my cough, when a second coughing jag begins. The room begins to spin, and a second set of clothing has just bit the dust. Now I'm really mad! There shouldn't be an ounce of fluid to create this problem 30 seconds after leaving the restroom, come on! I realize that it's just my body's sense of humor reminding me that it's in control, and until I crown it as my master, it will continue to torment and remind me that it is the boss of me! So I surrender control back to my body, and I promise never to take lightly any medical condition that crosses my path.
I know I'm not the only girl around who has "lost it", I do have friends who have confidentially shared (I promise I won't rat you out!). But I have to know, are girls the only ones with this problem, do guys suffer from this too? I'm sure I'll never get an answer to that question (who would admit to something as humbling as tinkling in your pants, oh yah, I just did lol), but then again, maybe they paid their dews during puberty! Well,it's kegel time!
Humbled and learning,
Michele
Job 2:10
Shall we indeed accept good from God and not accept adversity? In all this Job did not sin with his lips.
Lesson: All month God has blessed me with help in my room every single day! I will accept adversity in the same manner as the blessings.
Tuesday, September 21, 2010
Experiencing "Normal"
I woke up yesterday morning with a runny nose and a sore throat. I actually smiled at the thought of being ill with something "normal". Since I work every day with the symptoms of POTS, I figured a cold or allergies would be a breeze! The beginning of the day went pretty much as usual, with just the added nose blowing. Though it would have been much harder without the help of my teacher friend Karen and a parent volunteer. But by the end of the day my body let me know that it was done,fever and fatigue set in. I would definitely need a substitute for the next day. So I went to the office to request a sub, which on this particular day I felt like Oliver begging for some gruel. Or in my words, "Oh please, amazing, wonderful person in charge of all the critical workings of our school, would you please in all your magnificence call a sub for me". My hands quivering as I give her my sub request. I get the look, then I hand her my paperwork and scuffle out of there as quickly as possible. I go back to my room and write my sub plans, which is almost as much work as going in to work myself. Two hours later my sub plans are completed. I'm not sure how understandable they are, but hopefully the sub will make it through the day in one piece!
I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.
After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.
When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.
Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.
I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.
Recovering,
Michele
I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.
After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.
When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.
Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.
I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.
Recovering,
Michele
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