Yes there is a point to the title!
My iMac was temporally down, so what does a Mac user do? They take it to the Apple store of course to get it fixed. So that is what we (me and momma) did.
We thought we were going to drop the computer off and leave. Well no thats not how it worked, we got there an HOUR after they opened and they were like oh it will be 2 hours. I was already short of breath from our little hike to the store, was very dizzy and my heart was up. I told Momma hey i'll be fine lets get some coffee in me to get my BP up. Most POTS patients have low blood pressure. So we went to the coffee shop and we sat down to drink our coffee and sit so my HR would go down and such. So we finally get back to the Apple store and it turns out the fix/upgrade your computers while you wait! It's so awesome!! I loved it! :-D. Well here's the problem I forgot we had well I had only eaten some grapes to take my meds thats morning. Which is NOT enough calories to go with the amount of calories I was burning be up and active. I had NO idea what to eat because i have a ton of food allergies, so we went to go look for cupcakes that were safe and they were sold out! I need the calories to I really thought i was just going to pass out in the store, my heart rate was up i didn't have enough water on me, i didn't eat enough, and I had been walking more then I should have! I ended up with snack that were iffy and i ended up being mildly allergic to!
Moral of the story you may ask?
POTS patient tend to burn more calories then the average person. They should know to eat enough and when they know its not safe to eat out pack food with you and sometimes even carry an extra bottle of water with you! Sit down frequently when you are out! This is one thing I did right! If you know you take meds in the middle of the day to keep your blood pressure up make sure you have them on you so you don't get sick and ALWAYS be thankful for the people around you that help you successfully go out and about! Oh and if anyone has a recipe for sesame garlic sticks send me the recipe they were delicious!
I hope everyone is well!!
Love
Poppet~ <3
Friday, August 31, 2012
Monday, August 20, 2012
"Is it fatal?"
This is a common question I get asked. I am not sure why. If I tell people about my disease that is one of the first questions I get asked.
No POTS is not a fatal disease or syndrome. It is considered disabling but it is not deadly. I have heard of people having brain injuries from passing out and hitting their heads. I personally passed out and broke my ribs. But I have yet to hear about a fatality linked to this disease. I have looked into it here and there but all research states it is not fatal.
There are different forms and stages of the disease, patients with a more mild version can lead very functional lives. There are some of us though that can sit in bed and spin. I remember feeling like I was going to fall off my bed before lol. There are also patients sicker then me, that just can not function in daily life. I have been there and very thankful to my doctors to help half function! What a blessing. This one is short but wanted to let you guys no that from what research has shown this is NOT fatal.
I hope everyone is doing well,
Love Poppet
No POTS is not a fatal disease or syndrome. It is considered disabling but it is not deadly. I have heard of people having brain injuries from passing out and hitting their heads. I personally passed out and broke my ribs. But I have yet to hear about a fatality linked to this disease. I have looked into it here and there but all research states it is not fatal.
There are different forms and stages of the disease, patients with a more mild version can lead very functional lives. There are some of us though that can sit in bed and spin. I remember feeling like I was going to fall off my bed before lol. There are also patients sicker then me, that just can not function in daily life. I have been there and very thankful to my doctors to help half function! What a blessing. This one is short but wanted to let you guys no that from what research has shown this is NOT fatal.
I hope everyone is doing well,
Love Poppet
Thursday, August 16, 2012
Living with POTS
I was shown an article this week about a teenager who they believed took his life to POTS. I have been thinking about his for a couple days now and how saddened I am that a child thought death was his only option because he was no longer able to do tasks he enjoyed.
This is the greatest reason we need awareness to the disease. Most people with POTS do lose the ability to do average tasks some days. The article stayed this child was a hockey player and lost his ability to play to the disease. Although I do not play hockey I do know how it feel to lose the ability to do average task. Last year I broke my ribs my because I baked cookies and took a shower right after. To much heat, to much time on my feet, and out I went.
My treatment is very controversial and not support by many doctors. I am on chronic saline, although it is a wonderful treatment that many us advocate for and does give us the ability to do more in our daily life. Doctors frown upon it because it usually means a hospital setting. My wonderful Momma helped advocate for me with the help of my one doctor Superman, and helped push home health which is IV and in hospital treatment at home. I have a PICC line and this has been a life altering treatment. Which has brought me to thought. Did this child have the option? Was this child being properly treated? Did he have doctors that a thorough understanding of the disease process? Was there enough education out there that they knew how to treat him? For the average POTS patient there are quite a few medication that treat and work wonderfully, sometimes its a mix of medication that works as well.
Well the point of this I guess is: If we had awareness to this disease, if we had more doctors that thoroughly understood this disease. Most POTS patients could lead a some what normal life. Now there are different stages of POTS and there things that some of us will never be able to do again (anything with a high g-force for one) however with proper treatment, I was able to go to NC with Momma for the day, I am able to get back into school, and I am able to once again care for myself. I however was blessed with doctors (2) that actually understand and research the disease. I wish there was away that I could publicize the importance of education and awareness. This family had a fundraiser in his honor, I of course run a sight, Momma is in the best position as instructor she teaches her students, but I feel as though we or I can do more.
This busy bee is off to her busy day!
Love Poppet :-)
This is the greatest reason we need awareness to the disease. Most people with POTS do lose the ability to do average tasks some days. The article stayed this child was a hockey player and lost his ability to play to the disease. Although I do not play hockey I do know how it feel to lose the ability to do average task. Last year I broke my ribs my because I baked cookies and took a shower right after. To much heat, to much time on my feet, and out I went.
My treatment is very controversial and not support by many doctors. I am on chronic saline, although it is a wonderful treatment that many us advocate for and does give us the ability to do more in our daily life. Doctors frown upon it because it usually means a hospital setting. My wonderful Momma helped advocate for me with the help of my one doctor Superman, and helped push home health which is IV and in hospital treatment at home. I have a PICC line and this has been a life altering treatment. Which has brought me to thought. Did this child have the option? Was this child being properly treated? Did he have doctors that a thorough understanding of the disease process? Was there enough education out there that they knew how to treat him? For the average POTS patient there are quite a few medication that treat and work wonderfully, sometimes its a mix of medication that works as well.
Well the point of this I guess is: If we had awareness to this disease, if we had more doctors that thoroughly understood this disease. Most POTS patients could lead a some what normal life. Now there are different stages of POTS and there things that some of us will never be able to do again (anything with a high g-force for one) however with proper treatment, I was able to go to NC with Momma for the day, I am able to get back into school, and I am able to once again care for myself. I however was blessed with doctors (2) that actually understand and research the disease. I wish there was away that I could publicize the importance of education and awareness. This family had a fundraiser in his honor, I of course run a sight, Momma is in the best position as instructor she teaches her students, but I feel as though we or I can do more.
This busy bee is off to her busy day!
Love Poppet :-)
Saturday, August 11, 2012
What is "POTS"
Many people do not know what POTS is and majority have never heard of it until some of us our diagnosed. I sorta summed it up in the last post, but I pulled out some research that my wonderful doctor I call Superman gave me. They are from scientific journals so it will help explain what it is and how it is diagnosed. Atleast thats what I am hoping to explain to yall :-D
Postural Orthostatic Tachycardia Syndrome (POTS) is not really a disease it is a dysfunction of the autonomic nervous system. People who are diagnosed with POTS do not have any other "systemic diseases" meaning the entire body is affected. They also do not Orthostatic hypotension, hypothyroidism, or pregnant/lactating to name a few. Yes I have stated that many patients with POTS have low blood pressure, but orthostatic hypotension means the blood pressure drops when a person stands up. Also most people that are diagnosed with POTS are woman at a child baring age. Most of the symptoms the patients has are upon standing, some symptoms can come at any time, however most do not. The main symptoms that come with standing, are rapid heart, palpitations (fluttering feeling in your chest), dizziness, passing out, and an increased heart rate. Most POTS patients have a heart rate of 120 when standing.
POTS patients are commonly misdiagnosed with anxiety disorders. A lot of the symptoms are present with anxiety attacks. Shortness of breath, rapid heart rate, and dizziness. This leads to many misdiagnoses and very frustrated patients. Most doctors do not know what POTS is and when they see the symptoms they treat for anxiety and do not look at the rest of symptoms.
Most POTS patients are diagnosed with a tilt table test. It is a bed with straps to hold the patient in, the bed starts in laying down position and is stood up right. The patient is connected to heart monitors, blood pressure cuffs, and IV's they watch to see how the patients heart is affected and they try to remake the symptoms that makes the patients pass out. Sometimes they use a cardiac drug to make the heart race. If the test is positive the patient will pass out. They also run blood work to make sure there is no under lying disease as mentioned above.
As for treatment, there is no clear cut plan. Each patient is treated according to symptoms. However, the most common treatment is florinef. It is suppose to raise a patients blood pressure and lower the heart to decrease symptoms of POTS. Beta-blockers is another common treatment which lowers and controls the patients heart rate. There are other medications that can have this same affect as well. In more severe cases a patient can be prescribed saline on and off to keep the blood volume up as well erythropoietin. Doctors will also recommend eating as much salt as possible to keep the blood pressure up. Most doctors recommend over 6 grams of salt a day so most patients take supplements and add salt to every meal.
I pulled this information from 2 articles (i do have more lying around if you have questions) but if you want to read the articles they are:
Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience By Mart J Thieben et al
The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management by Satish R Raj
I hope this helps give you a medical explanation of the disease process and if you have any question or want something elaborated on more feel free to email me or even leave a comment.
~Poppet!
Postural Orthostatic Tachycardia Syndrome (POTS) is not really a disease it is a dysfunction of the autonomic nervous system. People who are diagnosed with POTS do not have any other "systemic diseases" meaning the entire body is affected. They also do not Orthostatic hypotension, hypothyroidism, or pregnant/lactating to name a few. Yes I have stated that many patients with POTS have low blood pressure, but orthostatic hypotension means the blood pressure drops when a person stands up. Also most people that are diagnosed with POTS are woman at a child baring age. Most of the symptoms the patients has are upon standing, some symptoms can come at any time, however most do not. The main symptoms that come with standing, are rapid heart, palpitations (fluttering feeling in your chest), dizziness, passing out, and an increased heart rate. Most POTS patients have a heart rate of 120 when standing.
POTS patients are commonly misdiagnosed with anxiety disorders. A lot of the symptoms are present with anxiety attacks. Shortness of breath, rapid heart rate, and dizziness. This leads to many misdiagnoses and very frustrated patients. Most doctors do not know what POTS is and when they see the symptoms they treat for anxiety and do not look at the rest of symptoms.
Most POTS patients are diagnosed with a tilt table test. It is a bed with straps to hold the patient in, the bed starts in laying down position and is stood up right. The patient is connected to heart monitors, blood pressure cuffs, and IV's they watch to see how the patients heart is affected and they try to remake the symptoms that makes the patients pass out. Sometimes they use a cardiac drug to make the heart race. If the test is positive the patient will pass out. They also run blood work to make sure there is no under lying disease as mentioned above.
As for treatment, there is no clear cut plan. Each patient is treated according to symptoms. However, the most common treatment is florinef. It is suppose to raise a patients blood pressure and lower the heart to decrease symptoms of POTS. Beta-blockers is another common treatment which lowers and controls the patients heart rate. There are other medications that can have this same affect as well. In more severe cases a patient can be prescribed saline on and off to keep the blood volume up as well erythropoietin. Doctors will also recommend eating as much salt as possible to keep the blood pressure up. Most doctors recommend over 6 grams of salt a day so most patients take supplements and add salt to every meal.
I pulled this information from 2 articles (i do have more lying around if you have questions) but if you want to read the articles they are:
Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience By Mart J Thieben et al
The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management by Satish R Raj
I hope this helps give you a medical explanation of the disease process and if you have any question or want something elaborated on more feel free to email me or even leave a comment.
~Poppet!
Monday, August 6, 2012
POTS and my journey
Let me first start off by introducing myself. My name is Criss (a good friend of my calls me Poppet) I am 25 and have been battling POTS since I was 22 but did not know the name of it until I was almost 23 years old. I was officially diagnosed about 9 months later. We first had to get my poor asthma under control!
How about we start from the beginning?
I guess you could say I had a normal life like any other "average" girl. I had a job, was in college, had a boyfriend, friends, went to the gym, and had a very active life. I don't want to say out of nowhere but I gradually started to get sicker. I would always complain about my heart racing but always wrote it off as typical asthma drug reaction. I was getting sicker and weaker every day but we had no idea as to why. My allergist I had then said I more then likely just had a tumor on my heart and was causing my asthma like symptoms, making me feel like I was having an asthma attack. Yes my allergist really did tell me this!! Poor Momma once again had to calm me down, I got in with a great group in my area, they did several echocardiograms (almost like an ultrasound but of the heart), we couldn't find anything wrong! My heart was structurally sound just very rapid. Frustrated with no answers, and several tests later. My Momma asked a doctor for any suggestions as to how to help me cause I was constantly having asthma attacks and went from working, school, gym, to early being able to get out of bed. Having such bad chest pain I'd be rushed to the ER thinking I was having a heart attack! Which thankfully she has some great co workers because then superman came into the picture. He is my pulminologist. I call him superman cause he fixes everything and superman is one of my fave superhereo's. The first thing he noticed upon meeting me was my pupils do not constrict like an average persons do. When light shine's on your eyes they naturally constrict to decrease the amount of light that goes into them. He had a pulseox and saw my heart rate went up as I stood up, talked, moved, and anything else I did. I shut up and sat down my heart went back down to atleast 100. He looks at me and goes you have POTS! Postural Orthostatic Tachycardia Syndrome!! After he got my asthma under control which was a life saver all in itself. He sat me up with a tilt table test. They strap you to this table like Frankenstein stand you up from a laying position attach you to all these wires and machines and try to mimic what happens to you in real life. Yep, I passed out and got my official diagnosis! Relief and nerves all in one! What does this mean? What happens now? What do we do?
I had a lot of miss-steps since then. Most people with POTS can have betablockers for their tachycardia to slow down their heart rate. Well I have really bad asthma so that was out of the picture. So we put me on an ever so popular drug for POTS patients called florinef, well about a year later that had me admitted to the hospital for about 13 days! Which is when they put me on 24 hour saline which has been a life saver! I also have 2 great specialist working together to keep me stable. Yes, I know I still have not really explained what POTS is. Well here ya go if you are still reading.
POTS is a form of dysatuonomia. This basically means dysfunction of that autonomic nervous system. What does that mean? Well the autonomic nervous system controls your heart rate, blood pressure, breathing, digestion, kidney function, and everything else we do not think about. Most people with POTS have a wide variety of complaints, passing out, rapid heart rate, anxiety attacks for no reason, light sensitive, noise sensitive, heat sensitive, some sweat to much, some sweat to little, some have problems with digestion, some can not retain water, and there's also motion sickness! We can't forget the heart palpitations, chest pain, skipping beats and hearing your crazy! Most doctor's will right you off as crazy or a psych patient when there really is a name for this disease its just very under researched and under studied! I deal with a lot of these symptoms on a daily basis. I have chest pain on and off, palpitations, shortness of breath from my asthma and POTS, my eyes do not constrict properly so I am always seen with sunglasses on. I can NOT retain an once of water. So when I have a mild asthma attack I become very dehydrated. There's is a lot more on this but I will get my research out so it is more accurate.
I personally have come a long ways with my POTS. I went from not having a life, to getting a small fraction of it back. So I have saline going ALL the time? I can now go to the mall with Momma here and there! Which in itself is amazing! I will leave you all here for now, I know this is/was a lot to read and I hope you all enjoy myself and I can bring some awareness your way!!
Love, Poppet :-D
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