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.
Saturday, October 9, 2010
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
Tuesday, August 24, 2010
Multi purpose POTS meds, from anidepressants to erectile dysfunction
If you ask anyone with dysautonomia how they feel about medication, you'll probably get feelings that stretch on the edges of both sides of a pendulum. On the one side is the dependence on medications to help us to function, without it many would be bed ridden. Medications that keep us from fainting, barfing, insomnia and fatigue. We can't help but be thankful for the benefits they offer. On the other side of the pendulum, is the side effects of those medications, the inability for those medications to take away all the symptoms and the emotional roller coaster of trying one medication after another to find something that helps us to feel somewhere close to normal. And then when they don't work picking yourself up off the floor, dusting yourself off, put a smile back on your face, only to go through the process over and over again searching for the cure.
Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.
Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.
I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.
Always inspired,
Michele
Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.
Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.
I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.
Always inspired,
Michele
Monday, August 16, 2010
Michael Jackson, Howard Hughes and Me!
What could I possibly have in common with Michael Jackson or Howard Hughes? It's definitely not the money or fame. I can't dance (though my inner diva sometimes believes I can) or design aircraft. The commonalities may seem illusive, but they're actually reclusive. All three of us have different reasons for choosing to be separated from society, each of us has made a conscious choice to be alone.
I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.
The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.
Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!
Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.
Always inspired,
Michele the hermit
I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.
The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.
Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!
Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.
Always inspired,
Michele the hermit
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