Thanks for sharing this video. As someone who has had Chronic Fatigue syndrome for nearly 16 years and very recently diagnosed with POTS I find your positive attitude, useful research and straight talking really helpful. Thanks for being so inspiring, I hope your current treatment is helping and continues to help. I love your mantra "do what you can, when you can" as I think people give themselves such a hard time about what they can't do. It's amazing the effect of being kind to yourself can have. Thanks again, I love watching your videos xx
Thanks so much for watching!! I'm so sorry that you deal with POTS on top of your CF. I'm thankful that the vid was helpful. I do hope you are receiving treatment of some sort that gives you some relief. It can be quite hard to remain positive and sometimes I do slip into the "hole" but it's never for too long. Be well, Elizabeth
I am receiving some treatment thankfully, and I think we all fall in the "hole" from time to time. I know I do! It helps to know that we can at least influence how we deal with chronic illness. Thanks again xx
Glad to hear, and I absolutely agree with you. We might not be able to control our circumstances, but we can certainly try our best to react and respond positively :)
Dear Elizabeth, I have been sick off and on for years and was recently diagnosed with SLE (Lupus). I'm still in the grieving stage. I have tried in my crafting and art to narrow it down to things I can do to help me with this as I can no longer do many of the things I was doing. Thank you for your openness in sharing your chronic illness. I have tried to focus on being more positive about the things I can do, which aren't many. Some days it is all I can manage to do just to get my shower and have had to resort to using a shower stool and many times my hubby for help with that. God bless you and take care. Love and Hugs, Pam xoxo
Thank you so much for watching and for sharing a bit of your struggles with me. I'm so sorry you suffer as well. Know that you are not alone! We might feel helpless at times, but we never have to be hopeless. Richest blessings to you!! Be well, Elizabeth
Hi Elizabeth, I love your new look, the hair cut and color are so nice. It is amazing how positive attitude you have regarding your illness and you are a great inspiration for people that have an illness and even for does who are ok, it is refreshing. Thank you for sharing with us and God bless you and your family. Hugs.
Thanks so much for watching!! Love getting my hair chopped off!! LOL, it's so much easier. This is my natural color, greys and all :) A positive attitude is better for everyone involved, believe me. It's not easy sometimes, but with a bit of effort, joy can be found everywhere, if we just look :) May God bless you as well. Be well, Elizabeth
I have autonomic neuropathy caused by type 2 diabetes. My blood pressure drops when I stand up and I get extremely lightheaded. Most days I have to deal with lightheadedness and dizziness. My legs feel strange when I walk. In the summer I sweat like a horse. At least I know what is the cause of my symptoms. You have such a positive attitude, and I admire you for that. Love, love , love your videos. I just started making my first junk journal. Best wishes to you!
Thanks so much for watching!! I'm so sorry you suffer with illness as well. Feeling lightheaded and dizzy is no fun at all. I figure if I can't change my circumstances, I can certainly change how I react and respond to them. Some days are easier than others, but I try to keep on keeping on. Glad to hear you started your first junk journal!! Happy Journaling :) Richest blessings to you. Be well, Elizabeth
Thanks for sharing this Elizabeth. It's interesting and informative, I knew nothing about POTS before watching this. It makes me even more aware of how amazing you are to do all that you do despite this chronic illness.
Hi Elizabeth, a fantastic video. It will educate those of us who know little about the illness and I'm sure offer support to those who also share your diagnosis. You wore a heart monitor for twenty one days- crikey! I was glad to see the back of it after three days! I am sure that you are right, taking a positive approach, whilst it doesn't make the illness go away gives you a better quality of life and is probably the only way you can survive without descending into negativity and depression. Brilliant way to support Dysautonomia Awareness month. You are a real inspiration, Ali xxx
Thank you for watching sweet Ali!! This poor video was all over the place, but I hope that it helped to spread a bit of awareness. Even though I had the monitor for 21 days, I could unhook it to shower and whatnot, so it wasn't so bad. My poor BQ had to have one as well, she also has POTS. Hers will most likely go away though, that's what the literature says anyhow, here's to hoping!! She does really well with it all though; she's such an inspiration to me :) It took me a good long while, but positivity means all the difference in the world!! Be well, Elizabeth
Hi dear sister! Brilliantly done... your explanation and what you went through is so heartfelt, informative and thorough. As someone who suffers from one of those "invisible" illnesses and how it impacts our life both physically and emotionally , your video is incredible and should be seen by anyone who suffers from POTS, fibromyalgia or any of these chronic illnesses. Going through the stages after a diagnosis like this is so difficult.... Your video contribution of awareness should be viewed by everyone both those suffering and also family members and friends who have to accept that the affected person's life as they know it has changed. When you don't "look sick" sometimes it's difficult to understand the day to day adjustments we have to make to live our lives. Thank you so much for sharing your journey dear sfam. Much love, continued prayers and big hugs.
Thank you so much for watching and for your sweet comment!! I've never thought of myself as a warrior, just another gal gettin' through life :) Be well, Elizabeth
I'm so glad I caught your video tonight as I was surfing around! You did a great job explaining what POTS is. I have EDS and a lot of people with this also have POTS, I do not but wondered what it was all about. Some day I'll do a video on my channel and share what it's like to have EDS. It was very helpful and comforting to see how you have adjusted your life and still enjoy peace and happiness in spite of your syndrome. Thank you for sharing! OX
Thank you so much for watching Jeri!! I have heard of EDS, and know that many times it goes hand in hand with POTS. I'm so sorry you suffer, but so glad to hear that you don't have POTS on top of it all (EDS is quite enough, I would think). I would like to see a video on EDS, as I don't know much about it. I wasn't always peaceful and happy, but having my faith, my family and my "art" sure do help a lot :)
Thank you so much for watching Donna!! I'm so sorry you suffer...dysautonomia is not something that most doctors know about, so it is important to find one that is familiar with the chronic illness. Usually a "tilt table test" is the only way to diagnose. Hope you get answers soon. Be safe and be well, Elizabeth
Thank you for doing this video. I can so relate to you as I suffer from Geniculate Neuralgia, along with some other issues. But the GN is an "invisible illness" not many understand how hard it is to do normal things in life. Along with that my youngest son was diagnosed with a very rare syndrome called Behcet's, it affects every part of his body, he has more issues than that too. It's very tough at the beginning, there are tough days, but we will get through it. Sending prayers to you for your illness. XO
Thank you so much for watching!! I'm so sorry you deal with such illness as well as your son's illnesses. It's so hard to see our children suffer. My daughter also has POTS, and my husband has some sort of chronic illness as well, we're still trying to figure it all out. I am blessed in that I have a wonderfully supportive family in my husband and children. I might feel helpless at times, but I shall never be hopeless! Be well, Elizabeth
Yes I know what you mean about grief, I have Type 2 diabetes, still go back and forth with my grief, it's invisible to. I cry, I get angry, I get fustrated and so on, that's like diabetes everyone's diabetes is different. My mom passed away year and a half ago, and I am grieving again, and it's kind of like the grief I go through from the diabetes I was diagnosed in 2012. Long journey. Yes it did help you explaining, thank you.🤗😘🙏💕
Thank you for sharing this. I've only found your crafting channel today and saw this. I've never heard of it so I was interested. My husband was on his motorcycle about 8 years ago and realized he was having trouble moving his feet down when he stopped. He came back home. When he tried to come up several steps into the house he couldn't and had to crawl. He spent time resting and the next day he was fine. However when he explained his problem to a friend of his that's a chiropractor he told him to schedule an appointment with his doctor right away. He did and our doctor didn't know what was wrong and sent him to a neurologist. The neuro sent him to a specialist at Cleveland Clinic who knew exactly what was happening. My husband was apparently born with an arteriovenous fistula, avf, but they don't usually show up until a man is in his 50s, which my husband was. It mimics MS and is often misdiagnosed. Thankfully, my husband had surgery and it was removed from his spine, but he can still walk without a cane or anything. Most aren't that lucky. My sister-in-law had one in her brain and she's in a wheelchair with many complications and she's younger. Hers was possibly due to head trauma as a child. But anyways, my husband is considered an incomplete paraplegic since he's mobile, but he has nerve damage from the waist down, and has to take a lot of meds morning and night just to keep his internal organs functioning. So I do understand the phases you've gone through and am very glad you're doing as well as you are. The thing that broke my husband's heart most was his bike became an unsafe place so he sold it to a good friend. It just wasn't fun anymore since it was a worry to try riding. My prayers and faith go with you.
Thank you so much for watching, and for sharing your husband's courageous story with me. Being ill and in pain daily is a tough row to hoe, but in my experience, one can still grow a beautiful garden, and even go on to share seeds with others, so that they too can begin their own. I am truly sorry that your husband and sister in law suffer so and I wish you all the best. Sending prayers for you all. Be well, Elizabeth
I'm watching this quite a bit after you published it. I was diagnosed with Hyopkalemic Periodic Paralysis in 2015. Quite a few people with PP fall under the umbrella of Pots. I think we may live near each other and I was wondering if you could share your doctor with me. I've had several dr's drop me. Right now my endocrinologist(Brodie) trats me. He's great but I pretty much educate him about my illness.Also, I've got the whole thyroid nodule thing going on. Anyway, I'm having the issues upon standing and I need to address it at my next dr's appt. Thanks for sharing. This was an awesome video. I live in Naples btw.
Marina Roach I’m so sorry you suffer with chronic illness as well. It is quite difficult, not to mention frustrating finding a dr to help. If you could send me a private message via my email listed in the description box, I’d be happy to help in any way I can. I live at least 2 hours from you, so don’t know if you are willing to travel. The dr that treats me has other patients with dysautonomia, but the office itself is quite frustrating. Be well, Elizabeth Oh, I forgot, I seem to remember a dr in your area that treats POTS; I’ll have to do some digging to find their name 🌺
I'm so glad that I saw this video because you have described my husbands issues we've been having since last Christmas he has been in the hospital with test, cardiologists heart monitors 3 times. He now has a heart monitor implanted in his chest because they do not know why he keeps having the high blood pressure and excessive heart rates fatigue they said they will leave the monitor in him for 3 years cause they are trying to see if there is a pattern so they can diagnose him. He has a dr appt net next month I,m going to ask them to see if they can look into POTS to see if maybe he has this illness thank you for being corageous to open up your private part of your life.
Thank you so much for watching!! I'm so sorry your husband suffers so, it is so hard to see our loved ones in pain. I do hope they get to the bottom of his issue and he can begin to receive treatment and get some much needed relief. Be well, Elizabeth
Hay I have fibromyalgia so I know how you feel I'm in pain constantly I had spinal surgery which triggered my illness I find it hard to do everyday stuff but I never let it rule my life
Thanks so much for watching!! I'm so sorry you suffer as well. I do hope you are able to get some relief. I glad to hear that you don't let it run your life. Attitude is everything :) Be well, Elizabeth
Hi. Thank you for the video. I wasn't sure if I missed it but I know you said you found a doctor, and you are now being treated. What is the treatment? Is there medicine or do you treat the symptoms as they occur? I was just a little unclear about that. Thanks.
Thank you so much for watching. I am being treated by beta blockers, they keep my heart rate and blood pressure under control. Depending on the type of POTS that one has is what determines the treatment. HTH. Be well, Elizabeth
Thank you so much for watching!! I am so very sorry you suffer with this condition :( 11 years later...after initial diagnosis and I'd say I am back to about 85% of my old self. My POTS is a bit different in that my bp tends to run high instead of dipping down. I am back to working full time for one last year, and I only have the occasional flare up, usually brought on by stress or overdoing. I will answer more in your later question. Again, so sorry you deal with this...my kids were 11 and 13 when I was diagnosed; it was super hard on them, but I think that it made them stronger and more empathetic in the long run, and little did I know that they would need that as my daughter was dx about 9 years ago with Dysautonomia as well. Be safe and be well, Elizabeth
Thanks for sharing this video. As someone who has had Chronic Fatigue syndrome for nearly 16 years and very recently diagnosed with POTS I find your positive attitude, useful research and straight talking really helpful. Thanks for being so inspiring, I hope your current treatment is helping and continues to help. I love your mantra "do what you can, when you can" as I think people give themselves such a hard time about what they can't do. It's amazing the effect of being kind to yourself can have. Thanks again, I love watching your videos xx
Thanks so much for watching!! I'm so sorry that you deal with POTS on top of your CF. I'm thankful that the vid was helpful. I do hope you are receiving treatment of some sort that gives you some relief. It can be quite hard to remain positive and sometimes I do slip into the "hole" but it's never for too long. Be well, Elizabeth
I am receiving some treatment thankfully, and I think we all fall in the "hole" from time to time. I know I do! It helps to know that we can at least influence how we deal with chronic illness. Thanks again xx
Glad to hear, and I absolutely agree with you. We might not be able to control our circumstances, but we can certainly try our best to react and respond positively :)
Dear Elizabeth, I have been sick off and on for years and was recently diagnosed with SLE (Lupus). I'm still in the grieving stage. I have tried in my crafting and art to narrow it down to things I can do to help me with this as I can no longer do many of the things I was doing. Thank you for your openness in sharing your chronic illness. I have tried to focus on being more positive about the things I can do, which aren't many. Some days it is all I can manage to do just to get my shower and have had to resort to using a shower stool and many times my hubby for help with that. God bless you and take care. Love and Hugs, Pam xoxo
Thank you so much for watching and for sharing a bit of your struggles with me. I'm so sorry you suffer as well. Know that you are not alone! We might feel helpless at times, but we never have to be hopeless. Richest blessings to you!! Be well, Elizabeth
Hi Elizabeth, I love your new look, the hair cut and color are so nice. It is amazing how positive attitude you have regarding your illness and you are a great inspiration for people that have an illness and even for does who are ok, it is refreshing. Thank you for sharing with us and God bless you and your family. Hugs.
Thanks so much for watching!! Love getting my hair chopped off!! LOL, it's so much easier. This is my natural color, greys and all :) A positive attitude is better for everyone involved, believe me. It's not easy sometimes, but with a bit of effort, joy can be found everywhere, if we just look :) May God bless you as well. Be well, Elizabeth
I have autonomic neuropathy caused by type 2 diabetes. My blood pressure drops when I stand up and I get extremely lightheaded. Most days I have to deal with lightheadedness and dizziness. My legs feel strange when I walk. In the summer I sweat like a horse. At least I know what is the cause of my symptoms. You have such a positive attitude, and I admire you for that. Love, love , love your videos. I just started making my first junk journal. Best wishes to you!
Thanks so much for watching!! I'm so sorry you suffer with illness as well. Feeling lightheaded and dizzy is no fun at all. I figure if I can't change my circumstances, I can certainly change how I react and respond to them. Some days are easier than others, but I try to keep on keeping on. Glad to hear you started your first junk journal!! Happy Journaling :) Richest blessings to you. Be well, Elizabeth
Thanks for sharing this Elizabeth. It's interesting and informative, I knew nothing about POTS before watching this. It makes me even more aware of how amazing you are to do all that you do despite this chronic illness.
Thank you so much for watching and for your encouraging, sweet comment :) Be well, Elizabeth
Hi Elizabeth, a fantastic video. It will educate those of us who know little about the illness and I'm sure offer support to those who also share your diagnosis. You wore a heart monitor for twenty one days- crikey! I was glad to see the back of it after three days! I am sure that you are right, taking a positive approach, whilst it doesn't make the illness go away gives you a better quality of life and is probably the only way you can survive without descending into negativity and depression. Brilliant way to support Dysautonomia Awareness month. You are a real inspiration, Ali xxx
Thank you for watching sweet Ali!! This poor video was all over the place, but I hope that it helped to spread a bit of awareness. Even though I had the monitor for 21 days, I could unhook it to shower and whatnot, so it wasn't so bad. My poor BQ had to have one as well, she also has POTS. Hers will most likely go away though, that's what the literature says anyhow, here's to hoping!! She does really well with it all though; she's such an inspiration to me :) It took me a good long while, but positivity means all the difference in the world!! Be well, Elizabeth
It wasn't all over the place. I did wonder about the shower issue ;-) I hope your daughter grows out of her Pots. big hugs xxxx
Hi dear sister! Brilliantly done... your explanation and what you went through is so heartfelt, informative and thorough. As someone who suffers from one of those "invisible" illnesses and how it impacts our life both physically and emotionally , your video is incredible and should be seen by anyone who suffers from POTS, fibromyalgia or any of these chronic illnesses. Going through the stages after a diagnosis like this is so difficult.... Your video contribution of awareness should be viewed by everyone both those suffering and also family members and friends who have to accept that the affected person's life as they know it has changed. When you don't "look sick" sometimes it's difficult to understand the day to day adjustments we have to make to live our lives. Thank you so much for sharing your journey dear sfam. Much love, continued prayers and big hugs.
Aww, thanks so much for watching and for your sweet, sweet comment!! Love you bunches
That you for sharing your journey, warrior ! Blessings to you as you continue to rise above.
Thank you so much for watching and for your sweet comment!! I've never thought of myself as a warrior, just another gal gettin' through life :) Be well, Elizabeth
I'm so glad I caught your video tonight as I was surfing around! You did a great job explaining what POTS is. I have EDS and a lot of people with this also have POTS, I do not but wondered what it was all about. Some day I'll do a video on my channel and share what it's like to have EDS. It was very helpful and comforting to see how you have adjusted your life and still enjoy peace and happiness in spite of your syndrome. Thank you for sharing! OX
Thank you so much for watching Jeri!! I have heard of EDS, and know that many times it goes hand in hand with POTS. I'm so sorry you suffer, but so glad to hear that you don't have POTS on top of it all (EDS is quite enough, I would think). I would like to see a video on EDS, as I don't know much about it. I wasn't always peaceful and happy, but having my faith, my family and my "art" sure do help a lot :)
Thank you for sharing. the information you have provided is given me another avenue to travel down regarding my illness. Thanks again.
Thank you so much for watching Donna!! I'm so sorry you suffer...dysautonomia is not something that most doctors know about, so it is important to find one that is familiar with the chronic illness. Usually a "tilt table test" is the only way to diagnose. Hope you get answers soon. Be safe and be well, Elizabeth
Thank you for doing this video. I can so relate to you as I suffer from Geniculate Neuralgia, along with some other issues. But the GN is an "invisible illness" not many understand how hard it is to do normal things in life. Along with that my youngest son was diagnosed with a very rare syndrome called Behcet's, it affects every part of his body, he has more issues than that too. It's very tough at the beginning, there are tough days, but we will get through it. Sending prayers to you for your illness. XO
Thank you so much for watching!! I'm so sorry you deal with such illness as well as your son's illnesses. It's so hard to see our children suffer. My daughter also has POTS, and my husband has some sort of chronic illness as well, we're still trying to figure it all out. I am blessed in that I have a wonderfully supportive family in my husband and children. I might feel helpless at times, but I shall never be hopeless! Be well, Elizabeth
It IS hard for sure. Thank God my Husband is in excellent health. It's just us two, a big stress. Yes, NEVER HOPELESS. I agree. Amen to that. XO
Yes I know what you mean about grief, I have Type 2 diabetes, still go back and forth with my grief, it's invisible to. I cry, I get angry, I get fustrated and so on, that's like diabetes everyone's diabetes is different. My mom passed away year and a half ago, and I am grieving again, and it's kind of like the grief I go through from the diabetes I was diagnosed in 2012. Long journey. Yes it did help you explaining, thank you.🤗😘🙏💕
I'm glad it helped :)
Thank you for sharing this. I've only found your crafting channel today and saw this. I've never heard of it so I was interested. My husband was on his motorcycle about 8 years ago and realized he was having trouble moving his feet down when he stopped. He came back home. When he tried to come up several steps into the house he couldn't and had to crawl. He spent time resting and the next day he was fine. However when he explained his problem to a friend of his that's a chiropractor he told him to schedule an appointment with his doctor right away. He did and our doctor didn't know what was wrong and sent him to a neurologist. The neuro sent him to a specialist at Cleveland Clinic who knew exactly what was happening. My husband was apparently born with an arteriovenous fistula, avf, but they don't usually show up until a man is in his 50s, which my husband was. It mimics MS and is often misdiagnosed. Thankfully, my husband had surgery and it was removed from his spine, but he can still walk without a cane or anything. Most aren't that lucky. My sister-in-law had one in her brain and she's in a wheelchair with many complications and she's younger. Hers was possibly due to head trauma as a child. But anyways, my husband is considered an incomplete paraplegic since he's mobile, but he has nerve damage from the waist down, and has to take a lot of meds morning and night just to keep his internal organs functioning. So I do understand the phases you've gone through and am very glad you're doing as well as you are. The thing that broke my husband's heart most was his bike became an unsafe place so he sold it to a good friend. It just wasn't fun anymore since it was a worry to try riding. My prayers and faith go with you.
Thank you so much for watching, and for sharing your husband's courageous story with me. Being ill and in pain daily is a tough row to hoe, but in my experience, one can still grow a beautiful garden, and even go on to share seeds with others, so that they too can begin their own. I am truly sorry that your husband and sister in law suffer so and I wish you all the best. Sending prayers for you all. Be well, Elizabeth
Bless you for sharing!!! I am sending you gentle hugs!!! Xxxooo
Thanks for watching Cindy!! I will accept your gentle hugs and send some right back to ya' :) Be well, Elizabeth
I'm watching this quite a bit after you published it. I was diagnosed with Hyopkalemic
Periodic Paralysis in 2015. Quite a few people with PP fall under the umbrella of Pots. I think we may live near each other and I was wondering if you could share your doctor with me. I've had several dr's drop me. Right now my endocrinologist(Brodie) trats me. He's great but I pretty much educate him about my illness.Also, I've got the whole thyroid nodule thing going on. Anyway, I'm having the issues upon standing and I need to address it at my next dr's appt. Thanks for sharing. This was an awesome video. I live in Naples btw.
Marina Roach I’m so sorry you suffer with chronic illness as well. It is quite difficult, not to mention frustrating finding a dr to help. If you could send me a private message via my email listed in the description box, I’d be happy to help in any way I can. I live at least 2 hours from you, so don’t know if you are willing to travel. The dr that treats me has other patients with dysautonomia, but the office itself is quite frustrating. Be well, Elizabeth Oh, I forgot, I seem to remember a dr in your area that treats POTS; I’ll have to do some digging to find their name 🌺
I'm so glad that I saw this video because you have described my husbands issues we've been having since last Christmas he has been in the hospital with test, cardiologists heart monitors 3 times. He now has a heart monitor implanted in his chest because they do not know why he keeps having the high blood pressure and excessive heart rates fatigue they said they will leave the monitor in him for 3 years cause they are trying to see if there is a pattern so they can diagnose him. He has a dr appt net next month I,m going to ask them to see if they can look into POTS to see if maybe he has this illness thank you for being corageous to open up your private part of your life.
Thank you so much for watching!! I'm so sorry your husband suffers so, it is so hard to see our loved ones in pain. I do hope they get to the bottom of his issue and he can begin to receive treatment and get some much needed relief. Be well, Elizabeth
Hay I have fibromyalgia so I know how you feel I'm in pain constantly I had spinal surgery which triggered my illness I find it hard to do everyday stuff but I never let it rule my life
Thanks so much for watching!! I'm so sorry you suffer as well. I do hope you are able to get some relief. I glad to hear that you don't let it run your life. Attitude is everything :) Be well, Elizabeth
Hi. Thank you for the video. I wasn't sure if I missed it but I know you said you found a doctor, and you are now being treated. What is the treatment? Is there medicine or do you treat the symptoms as they occur? I was just a little unclear about that. Thanks.
Thank you so much for watching. I am being treated by beta blockers, they keep my heart rate and blood pressure under control. Depending on the type of POTS that one has is what determines the treatment. HTH. Be well, Elizabeth
How r u hw is ur pots?
Thank you so much for watching!! I am so very sorry you suffer with this condition :( 11 years later...after initial diagnosis and I'd say I am back to about 85% of my old self. My POTS is a bit different in that my bp tends to run high instead of dipping down. I am back to working full time for one last year, and I only have the occasional flare up, usually brought on by stress or overdoing. I will answer more in your later question. Again, so sorry you deal with this...my kids were 11 and 13 when I was diagnosed; it was super hard on them, but I think that it made them stronger and more empathetic in the long run, and little did I know that they would need that as my daughter was dx about 9 years ago with Dysautonomia as well. Be safe and be well, Elizabeth