It's that time of the year again. Time to write my blog on heat and dysautonomia. Thankfully Southern California has been behind the times for hot Summer weather. Every day I said a prayer of thanks for the unseasonably cool Summer and dreading the day when the temperature would rise above 80 degrees. That dreaded day has finally come, and it's brought along a friend named humidity just to rub it in.
Heat has become one of my biggest enemies. When the temperatures go up my POTS symptoms soar right along with it. Hello increased heart rate, dropping bp, head aches, fatigue, shortness of breath, the increase chance of fainting, and that all so wonderful polly juice experience of my blood feeling like it's bubbling just below my skin. At times I feel like the witch from The Wizard of Oz, screaming "I'm melting!". Just my face whispering from a puddle that once was my body.
I do have a few weapons to help me fight the heat. I love my Artic Heat ice vest, a bit ugly but very cool. I just pull it out of the freezer when I need to take short trips outdoors or when I can't seem to cool my house down (I don't have central AC so I depend on two room AC's). I drink lots of water, so much that if you poke a few holes in me I convert to a watering can. I take extra salt tablets because I'd have to eat 5 bags of potato chips to get the salt I need. I stay indoors like a hermit and shut my house up like a bat cave. If it gets really bad I take a cool shower imagining I'm taking a swim at a luxury hotel with a cabana boy waiting to hand me my towel, a girl can dream! The heat is also a good excuse to load up on chocolate ice cream and mango smoothies. And most important,I say a prayer that God keeps me safe on these difficult days. Preparing for a hot day is much like preparing for a trip abroad, if you forget one important detail ( a passport or salt tablets) and your day or your trip can go very wrong.
Inspired,
Michele
Isaiah 25:4-5
For Thou has been a defense for the helpless, a defense for the needy in his distress, a refuge from the storm, a shade from the heat, for the breath of the ruthless is like a rain storm against a wall. Like heat in drought. Thou dost subdue the uproar of aliens; Like heat by the shadow of a cloud, the song of the ruthless is silenced.
Showing posts with label Artic Heat. Show all posts
Showing posts with label Artic Heat. Show all posts
Saturday, August 27, 2011
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.
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