Looking back at my posts lately, I realize they have been pretty whiny. Lots of complaining, when I have so much to be thankful for! For instance, I'm thankful God created mice. I despise mice! I'm famous for standing on the coffee table, screaming bloody murder if I see one. But these disgusting little creatures just might be a key component in making my life more livable! So, little mice, as long as you don't make my home your new home, please continue to multiply! But remember, mi casa es NOT su casa.
The month of April proved to be very exciting as far as POTS research! I have a brain that runs circles, but the mouse reference above did actually have a point. A group at Vanderbilt University School of Medicine in Nashville recently found a way to replicate POTS in mice. It involves a mutation in a norepinephrine transporter. This group previously found that POTS patients have this mutation, causing us to have some serious issues with adrenaline. I'm not a doctor and I didn't go to medical school so I'm not going to pretend to completely understand all of this. When I read these research studies, it's a long process that involves a lot of re-reading and Googling. Anyways, this is an exciting development in POTSie land. When studying actual humans, researchers are pretty limited in what they can do. While I feel a tiny little bit sorry for the hideous mice, they are opening a lot of doors in POTS research. Besides, I participated in a study at Mayo Clinic so I feel like I've paid my dues! ;-) Here's the link to that study by the way http://www.ncbi.nlm.nih.gov/pubmed/23580201.
This next bit of research came from some Doctors who I saw when I was first diagnosed at Mayo Clinic in Rochester. They found some new autoantibodies in some POTS patients. My very basic understanding is that anyone with an autoimmune disease has autoantibodies that attack certain parts of their body. For instance, people with Hashimoto's Disease have autoantibodies that attack the thyroid. The autoantibodies in this study attack a group of proteins responsible for many different functions in the body. They help regulate adrenaline signaling, calcium signaling, and energy metabolism, among other things. This makes perfect sense! It even explains why I might have a B12 deficiency. If my body is attacking proteins associated with energy metabolism, it seems that my body would use more B12 which is used for energy metabolism. Ding Ding Ding! We have a winner! :-) Again, I'm not a doctor so this is just my busy mind making speculations. Here is the link to that study http://www.ncbi.nlm.nih.gov/pubmed/23562385.
Those were the two main studies that caught my eye last month. There are others and I urge you to visit pubmed.org if you're interested in reading more. Pubmed is a wonderful resource. You can search any medical condition known to man and read research studies pertaining to them. Again, I'm sure I don't always decipher these studies accurately, but I like to try to stay up-to-date and informed on my condition. Plus, reading these studies gives me hope that good things are on the way! It amazes me how much they learn every year! Dr. Goodman told me that he thinks there is an autoimmune component to this illness and I feel like they are right on the crest of figuring it out. Exciting things on the horizon! Maybe when I get some extra energy and time, I'll go to medical school so I can solve this mystery myself! :-)
"An intelligent heart acquires knowledge, and the ear of the wise seeks knowledge." Proverbs 18:15
Amy
Showing posts with label Mayo Clinic. Show all posts
Showing posts with label Mayo Clinic. Show all posts
Monday, May 6, 2013
Friday, April 26, 2013
Salty, salt, salt...
My life revolves around salt! When I first went to Mayo Clinic in 2007, it was recommended I consume 3 grams of salt a day. That has now been increased to 10 grams a day! That's crazy talk! It's nearly impossible and I'd challenge you to try it, but I don't want you to have a heart attack.
The theory behind eating all this salt is that it will raise my blood volume and pressure. Some people think I'm lucky to have low blood pressure, but I've had it drop to 60/45 and that's a trippy experience! Who needs alcohol or drugs when you have a psychotic body? Anyways, back to the salt. I know it's not the answer to my problems. I have rare episodes where my blood pressure spikes through the roof (once to 175/140), so it's really all over the place. To me, it's obvious there is an underlying issue causing my body to have these blood pressure variations. But, until we figure that out, I eat salt!
To put this all in perspective, I would need to eat about 67 slices of bacon to get 10 grams of salt. I could also eat 11.5 cups of plain baked beans. If I'm having a bad tummy day and need bland food, I could eat 59 slices of white bread. If I'm having a sweet tooth, I could eat 31.25 cups of pudding. If I'm super thirsty, I could drink 37 bottles of Gatorade. If I'm feeling lazy, I could just chomp down 4.5 teaspoons of table salt (I'm sure my stomach would love that, see picture below)! I think you get the point!
So, I'm pushing salts as much as I can but probably not anywhere near 10 grams a day. Dr. Goodman recommended it, so I'm obviously listening. He is the expert after all. A not-so-tiny part of my brain worries about the side effects this salt consumption might bring along down the road. There was a recent study that linked high sodium diets and autoimmune diseases and I already have autoimmune tendencies. But, I will trust my doctor. Maybe, all of this salt will actually preserve my internal organs and I will live forever! Ha!
"After this lived Job an hundred and forty years, and saw his sons, and his sons' sons, [even] four generations." Job 42:16 (Maybe he ate a lot of salt, too!)
Amy
*I should probably add that you should not go on a high sodium diet unless advised to do so by your doctor. For most people, this is a very bad idea! The only thing worse would be to go on a high fat diet in an attempt to add cushion and avoid injuries. Terrible idea!
The theory behind eating all this salt is that it will raise my blood volume and pressure. Some people think I'm lucky to have low blood pressure, but I've had it drop to 60/45 and that's a trippy experience! Who needs alcohol or drugs when you have a psychotic body? Anyways, back to the salt. I know it's not the answer to my problems. I have rare episodes where my blood pressure spikes through the roof (once to 175/140), so it's really all over the place. To me, it's obvious there is an underlying issue causing my body to have these blood pressure variations. But, until we figure that out, I eat salt!
To put this all in perspective, I would need to eat about 67 slices of bacon to get 10 grams of salt. I could also eat 11.5 cups of plain baked beans. If I'm having a bad tummy day and need bland food, I could eat 59 slices of white bread. If I'm having a sweet tooth, I could eat 31.25 cups of pudding. If I'm super thirsty, I could drink 37 bottles of Gatorade. If I'm feeling lazy, I could just chomp down 4.5 teaspoons of table salt (I'm sure my stomach would love that, see picture below)! I think you get the point!
So, I'm pushing salts as much as I can but probably not anywhere near 10 grams a day. Dr. Goodman recommended it, so I'm obviously listening. He is the expert after all. A not-so-tiny part of my brain worries about the side effects this salt consumption might bring along down the road. There was a recent study that linked high sodium diets and autoimmune diseases and I already have autoimmune tendencies. But, I will trust my doctor. Maybe, all of this salt will actually preserve my internal organs and I will live forever! Ha!
"After this lived Job an hundred and forty years, and saw his sons, and his sons' sons, [even] four generations." Job 42:16 (Maybe he ate a lot of salt, too!)
Amy
*I should probably add that you should not go on a high sodium diet unless advised to do so by your doctor. For most people, this is a very bad idea! The only thing worse would be to go on a high fat diet in an attempt to add cushion and avoid injuries. Terrible idea!
Tuesday, April 23, 2013
Just Call me Grammy Amy....
Gray hair! Seriously?! This is the third one I've found since this last flare started. Of course, I plucked those unwanted strands as fast as possible. I didn't want any any of their friends getting any ideas about making my head their new permanent home. Now I'm just crossing my fingers that the old wives tale about gray hair isn't true (something about plucking one gray hair will make a bajillion more appear). So, first I started losing my hair by the handfuls and now it's coming back in gray. I'm starting to doubt that fact that I'm actually 27 and not 77. I even have Grammy hobbies (reading and crochet).
Other than that small life catastrophe, the past couple of days have gone fairly well. I'm not feeling great, but it's much better than I expected. I've started taking the B12 and Iron supplements. So far, no noticeable difference but I know these things take time to build up in your system. One of the amazing things that happened while I was in Arizona was that my pesky head pressure/pain issues disappeared. Like magic! After being there for a couple of days, that symptom was completely gone and it was NICE!! Well, now it's back. I'm choosing to blame it on the cold weather and that I'm obviously just not supposed to live in the frozen tundra! That may be a stretch, but it honestly might have something to do with pressure systems. I don't know how many doctors would agree with this, but I feel like weather and climate play a huge role in our health and overall well-being. Any old-timer will tell you that their bones and joints get achy right before a big storm. I'm not a professional, but I don't think that's a coincidence. At least after having the "MRI From Hell" as I like to call it, I know that I'm not dealing with a brain tumor or aneurism. There is comfort in finding out what you don't have, even if you aren't sure what you do have!
That brings on a whole separate topic of being patient. I knew when I went to Mayo, that I wouldn't come home with a new diagnosis and a magic pill to fix it. That's just not how it works. As I suspected, my tests mostly looked good. The B12 and Iron deficiencies are huge and hopefully addressing those will make a big difference, but I doubt they are causing all of these symptoms. So, I have to find the patience to take things one step at a time. I start by addressing those issues because they were the only obvious things that showed up. If I still don't feel better, I try the Mast Cell Cocktail. If that doesn't work, it's back to the drawing board. It can get a little hard to see the light at the end of the tunnel, but at least I now have a plan and a knowledgeable doctor to help me along the way. That in itself is a huge comfort! Patience and prayer! I will get through this!
"I will instruct you and teach you about the direction you should go. I’ll advise you and keep my eye on you." Psalm 32:8
Amy
Other than that small life catastrophe, the past couple of days have gone fairly well. I'm not feeling great, but it's much better than I expected. I've started taking the B12 and Iron supplements. So far, no noticeable difference but I know these things take time to build up in your system. One of the amazing things that happened while I was in Arizona was that my pesky head pressure/pain issues disappeared. Like magic! After being there for a couple of days, that symptom was completely gone and it was NICE!! Well, now it's back. I'm choosing to blame it on the cold weather and that I'm obviously just not supposed to live in the frozen tundra! That may be a stretch, but it honestly might have something to do with pressure systems. I don't know how many doctors would agree with this, but I feel like weather and climate play a huge role in our health and overall well-being. Any old-timer will tell you that their bones and joints get achy right before a big storm. I'm not a professional, but I don't think that's a coincidence. At least after having the "MRI From Hell" as I like to call it, I know that I'm not dealing with a brain tumor or aneurism. There is comfort in finding out what you don't have, even if you aren't sure what you do have!
That brings on a whole separate topic of being patient. I knew when I went to Mayo, that I wouldn't come home with a new diagnosis and a magic pill to fix it. That's just not how it works. As I suspected, my tests mostly looked good. The B12 and Iron deficiencies are huge and hopefully addressing those will make a big difference, but I doubt they are causing all of these symptoms. So, I have to find the patience to take things one step at a time. I start by addressing those issues because they were the only obvious things that showed up. If I still don't feel better, I try the Mast Cell Cocktail. If that doesn't work, it's back to the drawing board. It can get a little hard to see the light at the end of the tunnel, but at least I now have a plan and a knowledgeable doctor to help me along the way. That in itself is a huge comfort! Patience and prayer! I will get through this!
"I will instruct you and teach you about the direction you should go. I’ll advise you and keep my eye on you." Psalm 32:8
Amy
Friday, April 19, 2013
Mayo Clinic - The Final Day!
I met with Dr. Goodman this morning. What a roller coaster of emotions again! Most importantly, my brain MRI was all clear! Thank The Lord! He thinks my head pressure issues can be attributed to the POTS (probably a mix of poor blood flow and some inflammation).
He ran a lot of tests looking for different autoimmune diseases. Nothing showed up on any if those and to my knowledge he didn't run the ANA which I know is sometimes used to look at the overall autoimmune system. Again, I'm not a doctor so don't quote me on any of this! :-) The only things that showed up on my tests were anemia and extremely low Vitamin B12 levels. So, the plan is to first correct those issues and then see how I'm feeling. If I'm still not having a noticeable improvement, he wrote me prescriptions for the Mast Cell cocktail (Cromolyn, Pepcid, and Allegra). One thing at a time though.
I don't have Hyper POTS. Hyper POTS is the type of POTS that usually is associated with mast cell issues, but with my symptoms Dr. G. still isn't willing to rule out mast cell. I should mention that Hyper POTS has to do with the body releasing too much norepinephrine. Mast Cells are responsible for allergic reactions and for some reason there is a group of POTSies who have over active mast cells which creates fake allergic reactions. The third condition that seems to frequently go with this trio diagnosis, is Ehlers-Danlos Syndrome. EDS is a connective tissue disorder. There are many forms of EDS, but from what I've read it has to do with the body not producing collagen correctly. I have symptoms of this as well (hyper mobile joints and fragile skin that doesn't heal well).
Doctors haven't put together all of the pieces about why these conditions tend to go together. EDS and Mast Cell Activation Disorder make sense because mast cells are housed in connective tissues. EDS is genetic and I feel there is a link on my Mom's side of the family. There is a history of joint problems and other issues that I feel fit the bill! I'm not sure what happened with me to create this perfect storm of health issues, though! Maybe one day, doctors will put all these pieces together and be able to help more! For now, I feel like I've paved the way for my own little family. There is a 50% chance that EDS can be passed on so I pray that my girls don't have it! But, if they do, we now know what it is and they won't have to go through the years of tests, doctors visits, and tears that I have.
Thank you all again for all of the thoughts and prayers! It honestly means the world to me. I am beyond excited to fly home to the frozen tundra in the morning and see my beautiful babies! I'm also going to try my best to get back into my normal routine! I'll keep updating frequently to let you all know how I'm doing! I've been absolutely blown away by the response I've received from this little blog. I'm obviously not a writer, but I'm ecstatic that my story seems to be helping others! God is good! :-)
Amy
He ran a lot of tests looking for different autoimmune diseases. Nothing showed up on any if those and to my knowledge he didn't run the ANA which I know is sometimes used to look at the overall autoimmune system. Again, I'm not a doctor so don't quote me on any of this! :-) The only things that showed up on my tests were anemia and extremely low Vitamin B12 levels. So, the plan is to first correct those issues and then see how I'm feeling. If I'm still not having a noticeable improvement, he wrote me prescriptions for the Mast Cell cocktail (Cromolyn, Pepcid, and Allegra). One thing at a time though.
I don't have Hyper POTS. Hyper POTS is the type of POTS that usually is associated with mast cell issues, but with my symptoms Dr. G. still isn't willing to rule out mast cell. I should mention that Hyper POTS has to do with the body releasing too much norepinephrine. Mast Cells are responsible for allergic reactions and for some reason there is a group of POTSies who have over active mast cells which creates fake allergic reactions. The third condition that seems to frequently go with this trio diagnosis, is Ehlers-Danlos Syndrome. EDS is a connective tissue disorder. There are many forms of EDS, but from what I've read it has to do with the body not producing collagen correctly. I have symptoms of this as well (hyper mobile joints and fragile skin that doesn't heal well).
Doctors haven't put together all of the pieces about why these conditions tend to go together. EDS and Mast Cell Activation Disorder make sense because mast cells are housed in connective tissues. EDS is genetic and I feel there is a link on my Mom's side of the family. There is a history of joint problems and other issues that I feel fit the bill! I'm not sure what happened with me to create this perfect storm of health issues, though! Maybe one day, doctors will put all these pieces together and be able to help more! For now, I feel like I've paved the way for my own little family. There is a 50% chance that EDS can be passed on so I pray that my girls don't have it! But, if they do, we now know what it is and they won't have to go through the years of tests, doctors visits, and tears that I have.
Thank you all again for all of the thoughts and prayers! It honestly means the world to me. I am beyond excited to fly home to the frozen tundra in the morning and see my beautiful babies! I'm also going to try my best to get back into my normal routine! I'll keep updating frequently to let you all know how I'm doing! I've been absolutely blown away by the response I've received from this little blog. I'm obviously not a writer, but I'm ecstatic that my story seems to be helping others! God is good! :-)
Amy
Thursday, April 18, 2013
Mayo Clinic - Day 4
No appointments today! Thank God for that! My poor body is in serious protest mode right now. That MRI episode seems to have sent me over the edge a bit.
Last night was pretty calm, but my body was acting out of control. I was nauseous and had a burning sensation through my entire digestive tract. I've had this feeling before after having a bad episode. It's almost like the cells in my body get all fired up and really irritate my digestive system. My heart also had a mind of its own. I was lying in bed and every time I wiggled (even just reposition my leg) my heart rate went through the roof. So, I took a Zyrtec and Zantac because I didn't know what else to do and I was eventually able to fall asleep.
Today has been a bit better, but still not great. This morning I had some serious arm weakness. We're talking "barely able to lift my coffee cup" kind of weakness. That passed (as it usually does) and I've been left with some nausea and vertigo. Hopefully, by tomorrow I'll be back to 50% again. That's quite the goal isn't it?! Ha!
I did muster up the energy to go to a park in Fountain Hills with my hubby. It was relaxing and fun to walk around, holding hands, watching the ducks. I'm getting very lonesome for my babies, though! I can't wait to get home to them on Saturday and get some serious cuddle time! Tomorrow, I meet with Dr. G. in the morning. I have a lot of questions for him and I'm praying I don't forget anything! So if you're the praying type, please say one for me so that I can sleep well tonight and my brain will be crisp and ready for my consultation in the morning! :-)
Amy
Last night was pretty calm, but my body was acting out of control. I was nauseous and had a burning sensation through my entire digestive tract. I've had this feeling before after having a bad episode. It's almost like the cells in my body get all fired up and really irritate my digestive system. My heart also had a mind of its own. I was lying in bed and every time I wiggled (even just reposition my leg) my heart rate went through the roof. So, I took a Zyrtec and Zantac because I didn't know what else to do and I was eventually able to fall asleep.
Today has been a bit better, but still not great. This morning I had some serious arm weakness. We're talking "barely able to lift my coffee cup" kind of weakness. That passed (as it usually does) and I've been left with some nausea and vertigo. Hopefully, by tomorrow I'll be back to 50% again. That's quite the goal isn't it?! Ha!
I did muster up the energy to go to a park in Fountain Hills with my hubby. It was relaxing and fun to walk around, holding hands, watching the ducks. I'm getting very lonesome for my babies, though! I can't wait to get home to them on Saturday and get some serious cuddle time! Tomorrow, I meet with Dr. G. in the morning. I have a lot of questions for him and I'm praying I don't forget anything! So if you're the praying type, please say one for me so that I can sleep well tonight and my brain will be crisp and ready for my consultation in the morning! :-)
Amy
Wednesday, April 17, 2013
Mayo Clinic - Day 3
Oh Day 3! How much I've hated you! I thought this was going to be such an easy day. The only thing on my schedule was an MRI on my head to address some of the pressure/ headache issues I've been having.
I'm not claustrophobic so I wasn't too nervous about the scan. I changed into some lovely apparel (see picture below) and then had to wait for an hour and a half because they were behind schedule! I'm a fairly patient person and we didn't have any other plans today so it wasn't that much of a problem. The beginning of the scan went fine. It took about twenty minutes total with each scan taking between two to five minutes. Then they pulled me out of the machine to inject the contrast. This is where things got interesting. I've had CT scans before and never had an issue with the contrast but I had a horrific episode with this one! She injected the contrast and right as she was telling me I shouldn't feel anything a wave of nausea came over me and my entire body started to feel warm. Then my heart kicked it into overdrive! I have never had my heart race like that while lying down! The room started going black so I started praying and focusing on breathing. After what seemed like an eternity (but was probably only a minute or two) my heart started to calm down and we were able to finish the scan.
I never got hives or had trouble breathing so I know it wasn't a true allergic reaction. I also got a sunburn (dumb I know) yesterday so I couldn't really tell if I was flushing. So, I have no idea if that was a Mast Cell issue or just my funky heart. I do know it wasn't an anxiety attack because I was completely calm at the time and excited to almost be done with the scan. My strange body!
The good news is I am done with my testing! Hooray! It was a scary and emotional day and I don't think I would be able to go through much more. We meet with Dr. Goodman Friday morning to discuss results and make a game plan. I'm hoping to view what results I can on my phone and make a list of questions for him. Me and my lists! :-)
By the way, I don't want my experience to scare anyone who needs to have an MRI. There is something crazy going on with my body right now that is causing it to over-react to things that normally would not bother me. Most people do fine with that contrast and there is nothing to worry about! Keep in mind that a couple of months ago my body was having similar reactions every time I took a bite of solid food! Also, I apologize for any typos as I'm still posting from my phone and this tiny keyboard is very annoying!
Until tomorrow,
Amy
I'm not claustrophobic so I wasn't too nervous about the scan. I changed into some lovely apparel (see picture below) and then had to wait for an hour and a half because they were behind schedule! I'm a fairly patient person and we didn't have any other plans today so it wasn't that much of a problem. The beginning of the scan went fine. It took about twenty minutes total with each scan taking between two to five minutes. Then they pulled me out of the machine to inject the contrast. This is where things got interesting. I've had CT scans before and never had an issue with the contrast but I had a horrific episode with this one! She injected the contrast and right as she was telling me I shouldn't feel anything a wave of nausea came over me and my entire body started to feel warm. Then my heart kicked it into overdrive! I have never had my heart race like that while lying down! The room started going black so I started praying and focusing on breathing. After what seemed like an eternity (but was probably only a minute or two) my heart started to calm down and we were able to finish the scan.
I never got hives or had trouble breathing so I know it wasn't a true allergic reaction. I also got a sunburn (dumb I know) yesterday so I couldn't really tell if I was flushing. So, I have no idea if that was a Mast Cell issue or just my funky heart. I do know it wasn't an anxiety attack because I was completely calm at the time and excited to almost be done with the scan. My strange body!
The good news is I am done with my testing! Hooray! It was a scary and emotional day and I don't think I would be able to go through much more. We meet with Dr. Goodman Friday morning to discuss results and make a game plan. I'm hoping to view what results I can on my phone and make a list of questions for him. Me and my lists! :-)
By the way, I don't want my experience to scare anyone who needs to have an MRI. There is something crazy going on with my body right now that is causing it to over-react to things that normally would not bother me. Most people do fine with that contrast and there is nothing to worry about! Keep in mind that a couple of months ago my body was having similar reactions every time I took a bite of solid food! Also, I apologize for any typos as I'm still posting from my phone and this tiny keyboard is very annoying!
Until tomorrow,
Amy
Tuesday, April 16, 2013
Mayo Clinic - Day 2
Exhausted! That's how I feel free my biggest day of testing. On paper it didn't look all that terrible but my body is telling me otherwise. I'm glad it's over and now I can enjoy the rest of my week!
Today started with lots of bloodwork. Mayo Clinic is fantastically efficient so it was all done at once with only one poke. Too bad that poke came from a needle the equivalent of a needle used for cow vaccines. Those at home know what I'm talking about. For those unfamiliar with bovine vaccinations, the needles are massive! The nurse was great and got me with one poke and all was well. She took about six vials of blood. Within the hour, I was able to review most of the results on my Mayo Patient app. They checked for a lot of things and I'll have a better understanding of it all after I follow-up with Dr. G. on Friday. What I can tell is that I don't have chronic kidney failure (hooray), I'm anemic (which I already knew), and I have low Vitamin B12 levels (which I've read is fairly common in POTSies).
Next, was the catecholamine test. The nurse started the IV with the above mentioned ginormous needle and then left me in a dark room to rest for thirty minutes. She then snuck into the room, drew some blood for the IV, and took a blood pressure and pulse reading. Then, the obnoxious fluorescent lights come back on and I had to stand for ten minutes (and I didn't pass out!), after which she repeated the blood draw, blood pressure, and pulse. This test measures your body's chemical reaction to standing. It determines if you have Hyperadrenergic POTS. I've always had symptoms of Hyper POTS but always passed this test so I guess I'm just a breed of my own! I don't yet know the results of today's test.
Then, we moved on to the Autonomic Reflex Screening. Ugh! This is the one that really wiped me out! It started with the sweat test. Four cells are placed on your skin (arm, leg, and foot). A chemical solution is then distributed through those cells onto your skin. The nurse then turned the machine on which activated the cells. This part got a little uncomfortable. It feels a little like a bee sting that lasts for five minutes. It's not terrible, but not the most comfortable either. Next was the breathing exercises. These always make me symptomatic. It started with deep breathing. A light indicator lets you know when to breath in and out. I took eight deep breaths and then rested before repeating the test. My heart rate went over 100 beats per minute with this test even though I was lying down. So crazy! Next, I had to blow in a straw until a pressure monitor read 40. I had to continue blowing and keep the pressure at 40 for 15 seconds. Nearly impossible for me! My heart rate went through the roof and I was light headed and miserable. This explains why I can't blow up balloons! :-) We finished up the screening with the lovely Tilt Table Test. I loath the TTT! They strapped me to the table and slowly raised it to a near standing position. I almost fainted instantly. I was not able to see my heart rate readings but the nurse said it spiked really high. I was able to push through and had waves of tachycardia. It never went away but got worse and then a little better and then worse, etc. I made it almost to the end of the ten minutes before asking her to lie me down!
And then I got to eat! Finally! A big yummy cheeseburger! :-) Now I'm feeling extremely fatigued and weak and will be spending the rest of the day relaxing. Tomorrow shouldn't be as bad, so we shall see! Another day, another adventure!
Amy
Today started with lots of bloodwork. Mayo Clinic is fantastically efficient so it was all done at once with only one poke. Too bad that poke came from a needle the equivalent of a needle used for cow vaccines. Those at home know what I'm talking about. For those unfamiliar with bovine vaccinations, the needles are massive! The nurse was great and got me with one poke and all was well. She took about six vials of blood. Within the hour, I was able to review most of the results on my Mayo Patient app. They checked for a lot of things and I'll have a better understanding of it all after I follow-up with Dr. G. on Friday. What I can tell is that I don't have chronic kidney failure (hooray), I'm anemic (which I already knew), and I have low Vitamin B12 levels (which I've read is fairly common in POTSies).
Next, was the catecholamine test. The nurse started the IV with the above mentioned ginormous needle and then left me in a dark room to rest for thirty minutes. She then snuck into the room, drew some blood for the IV, and took a blood pressure and pulse reading. Then, the obnoxious fluorescent lights come back on and I had to stand for ten minutes (and I didn't pass out!), after which she repeated the blood draw, blood pressure, and pulse. This test measures your body's chemical reaction to standing. It determines if you have Hyperadrenergic POTS. I've always had symptoms of Hyper POTS but always passed this test so I guess I'm just a breed of my own! I don't yet know the results of today's test.
Then, we moved on to the Autonomic Reflex Screening. Ugh! This is the one that really wiped me out! It started with the sweat test. Four cells are placed on your skin (arm, leg, and foot). A chemical solution is then distributed through those cells onto your skin. The nurse then turned the machine on which activated the cells. This part got a little uncomfortable. It feels a little like a bee sting that lasts for five minutes. It's not terrible, but not the most comfortable either. Next was the breathing exercises. These always make me symptomatic. It started with deep breathing. A light indicator lets you know when to breath in and out. I took eight deep breaths and then rested before repeating the test. My heart rate went over 100 beats per minute with this test even though I was lying down. So crazy! Next, I had to blow in a straw until a pressure monitor read 40. I had to continue blowing and keep the pressure at 40 for 15 seconds. Nearly impossible for me! My heart rate went through the roof and I was light headed and miserable. This explains why I can't blow up balloons! :-) We finished up the screening with the lovely Tilt Table Test. I loath the TTT! They strapped me to the table and slowly raised it to a near standing position. I almost fainted instantly. I was not able to see my heart rate readings but the nurse said it spiked really high. I was able to push through and had waves of tachycardia. It never went away but got worse and then a little better and then worse, etc. I made it almost to the end of the ten minutes before asking her to lie me down!
And then I got to eat! Finally! A big yummy cheeseburger! :-) Now I'm feeling extremely fatigued and weak and will be spending the rest of the day relaxing. Tomorrow shouldn't be as bad, so we shall see! Another day, another adventure!
Amy
Monday, April 15, 2013
Mayo Clinic -Day 1
Well, I had my consultation with Dr. Goodman this morning. As always, he was terrific. If you have POTS, Dr. G. really is the best of the best. He was not shocked at all to hear of my symptoms. He said that its common for us POTSies to have extreme symptoms after surgery. They aren't sure of the mechanisms but something about the surgery seems to fire up our autoimmune systems. Unfortunately, this doesn't always show up in blood work.
He also noted that I have joint hyper mobility. Anyone familiar with POTS, Ehlers Danlos Syndrome, and Mast Cell Activation Disorder knows that these three things commonly go together. Since my surgery, I've thought I might be a lucky winner who has this trio diagnosis. Dr. G. seems to think the same. For now this is all speculation.
Tomorrow, I will be the human pin cushion. Blood work and catecholemine tests in the morning. It's the test where you lie flat in a dark room for thirty minutes, they draw blood, then you stand with the lights on and they draw more blood. This tests your body's chemical response between being relaxed verses stimulated. Tomorrow, I will also do the Autonomic Reflex Screening. This consists of the Tilt Table Test, some breathing exercises, and a sweat/temperature test. All of this before noon! I expect to be completely worn out by then! Oh, I'll also be doing a 24 hour urine collection. Lucky me! I get to carry around a pee jug all day!
He has more tests planned for later in the week to address my anemia and head pressure issues. One day at a time, though! So for now I am relaxing and resting. A huge weight has been lifted off my shoulders and I'm finally getting some answers and help! Hooray!
Amy
He also noted that I have joint hyper mobility. Anyone familiar with POTS, Ehlers Danlos Syndrome, and Mast Cell Activation Disorder knows that these three things commonly go together. Since my surgery, I've thought I might be a lucky winner who has this trio diagnosis. Dr. G. seems to think the same. For now this is all speculation.
Tomorrow, I will be the human pin cushion. Blood work and catecholemine tests in the morning. It's the test where you lie flat in a dark room for thirty minutes, they draw blood, then you stand with the lights on and they draw more blood. This tests your body's chemical response between being relaxed verses stimulated. Tomorrow, I will also do the Autonomic Reflex Screening. This consists of the Tilt Table Test, some breathing exercises, and a sweat/temperature test. All of this before noon! I expect to be completely worn out by then! Oh, I'll also be doing a 24 hour urine collection. Lucky me! I get to carry around a pee jug all day!
He has more tests planned for later in the week to address my anemia and head pressure issues. One day at a time, though! So for now I am relaxing and resting. A huge weight has been lifted off my shoulders and I'm finally getting some answers and help! Hooray!
Amy
Sunday, April 14, 2013
Mayo Clinic Trip
Wow! What a crazy couple of days! Mother Nature got her panties in a bunch and put a kink in our travel plans! We had to leave a day early to avoid a Spring blizzard of epic proportions. It cost us a small fortune but we made it to Arizona and I am on my way to getting some much needed help!
We flew in yesterday and the stress of traveling really took its toll! I felt terrible last night. Just my usual racing heart, adrenaline surges, head pressure, et cetera, et cetera. After a good nights sleep, I felt much better and we've been able to do some shopping and enjoy our day.
My appointments start bright and early tomorrow. I check in at 7:30 and have a consultation with Dr. Goodman at 8:00. I'm strangely calm this trip. It's my fourth Mayo trip so I kind of know the routine and I already know I really like Dr. G. I'm just excited to hopefully get some more answers and help!
I'll try to keep posting frequently. It will obviously depend on how worn out I am from the tests. Also, I apologize in advance for the many typos you will probably see. I'm posting from my phone and my fat thumbs combined with my POTSie shakes and tiny phone keyboards is a combo for disaster.
Well, I'm off to soak up a little sun! For those of my family and friends battling this dangerous storm back home, please stay safe!
Amy
We flew in yesterday and the stress of traveling really took its toll! I felt terrible last night. Just my usual racing heart, adrenaline surges, head pressure, et cetera, et cetera. After a good nights sleep, I felt much better and we've been able to do some shopping and enjoy our day.
My appointments start bright and early tomorrow. I check in at 7:30 and have a consultation with Dr. Goodman at 8:00. I'm strangely calm this trip. It's my fourth Mayo trip so I kind of know the routine and I already know I really like Dr. G. I'm just excited to hopefully get some more answers and help!
I'll try to keep posting frequently. It will obviously depend on how worn out I am from the tests. Also, I apologize in advance for the many typos you will probably see. I'm posting from my phone and my fat thumbs combined with my POTSie shakes and tiny phone keyboards is a combo for disaster.
Well, I'm off to soak up a little sun! For those of my family and friends battling this dangerous storm back home, please stay safe!
Amy
Tuesday, April 9, 2013
Busy, Busy Bee...
Wow! What a hectic week! Both of my girlies came down with RSV! Here I thought we were going to make it through the winter without any major sicknesses (well besides me). My youngest even had to go to the Emergency Room on Saturday night because her wheezing got so bad. She's on Albuterol treatments now and slowly getting better. Thank God they both got sick last week and not this week! I don't know how I would have forced myself to get on a plane Sunday, if I had taken my baby to the ER the night before. Ugh! Everything worked out!
So now I'm busy packing and planning for my Mayo Clinic trip. We fly out this Sunday! I've spent the last couple of months impatiently waiting for this appointment and here it is! By the way, I've made a little discovery. Mayo Clinic has a patient app for iPhones and iPads and it is simply terrific! I've downloaded it and it has everything. My appointments are programmed in, with the options to add reminders to my phone. All of my doctors notes and lab reports are also listed in the program. I'm told that when I get to Mayo, I'll be able to check this app after my appointments and get instant test results (even before I've followed-up with the doctor). What an amazing world we live in! So, if you're going to Mayo Clinic or have been there in the past, I would download this app. Just go to the app store and search for Mayo Clinic. You will need to make a patient account. If you don't have an iPhone or iPad, you can still create a patient account at the Mayo Clinic website and I highly recommend you do! There is nothing better than instant test results and doctor's notes!
The packing portion of my week includes many, many lists! I don't trust my terrible memory for anything! I'm lucky I still know my own name! So I have lists. Lists of things for appointments, lists of everyday necessities, lists of symptoms, lists of weird medical issues I've had. I have lists coming out my ears! I'll probably still forget something! Did I mention we had a blizzard here yesterday? Bring on the sunshine! Arizona, I'll see you soon!
"The light shines in the darkness, and the darkness has not overcome it." John 1:5
Amy
So now I'm busy packing and planning for my Mayo Clinic trip. We fly out this Sunday! I've spent the last couple of months impatiently waiting for this appointment and here it is! By the way, I've made a little discovery. Mayo Clinic has a patient app for iPhones and iPads and it is simply terrific! I've downloaded it and it has everything. My appointments are programmed in, with the options to add reminders to my phone. All of my doctors notes and lab reports are also listed in the program. I'm told that when I get to Mayo, I'll be able to check this app after my appointments and get instant test results (even before I've followed-up with the doctor). What an amazing world we live in! So, if you're going to Mayo Clinic or have been there in the past, I would download this app. Just go to the app store and search for Mayo Clinic. You will need to make a patient account. If you don't have an iPhone or iPad, you can still create a patient account at the Mayo Clinic website and I highly recommend you do! There is nothing better than instant test results and doctor's notes!
The packing portion of my week includes many, many lists! I don't trust my terrible memory for anything! I'm lucky I still know my own name! So I have lists. Lists of things for appointments, lists of everyday necessities, lists of symptoms, lists of weird medical issues I've had. I have lists coming out my ears! I'll probably still forget something! Did I mention we had a blizzard here yesterday? Bring on the sunshine! Arizona, I'll see you soon!
"The light shines in the darkness, and the darkness has not overcome it." John 1:5
Amy
Tuesday, April 2, 2013
Some Things Are Worth Fighting For...
Ugh! That moment when you NEED coffee, really need it, but the hubby just left for work and I've realized all to late that my hands are not working this morning. They are completely stiff and achy! The foil cover on the coffee creamer was created by Lucifer himself! I can and do drink my coffee black, but I was craving creamer this morning! I've had sick kiddos the last couple of days. I've been surrounded by buggers, fevers, and poop and if I'm going to survive this day I NEED COFFEE WITH CREAMER!!! I was willing to fight for it and fight I did! Just as I was about to break down in tears, the heavens opened, the angels began to sing, and that devilish foil peeled off of the creamer container! Maybe I'm being slightly dramatic, but it was a moment worth celebrating!
Catastrophe averted! But, speaking of things worth fighting for... I had decided I wanted to be medication free when I went to Mayo in a couple of weeks. I'm not taking many meds right now. Just a Zyrtec and Zantac every morning so I thought it would be no big deal. I was wrong! Apparently those little pills are helping more than I realized. I tried to skip them yesterday and by noon I felt so crummy that I had to take them. I was shaking, had a headache, and was so nauseous I couldn't eat! So, now I have a decision. I've talked before about how great I am with decisions! Ha!
I was really hoping to be completely off all medications so the tests at Mayo reflected how my body is really acting on its own. If I only had a two hour car drive to get to Mayo, I would suffer through, stop the meds, and deal with the consequences. That's not the case, though. We're flying. Those who know me, realize what a basket case I can be on an airplane. It probably didn't help that the first time I ever flew, an older lady sitting next to me mentioned her worry that the landing gear wouldn't fully lock in place just as we were landing. Gee, thanks for putting that thought in my head! So, my stomach is usually a bit knotted up when I need to travel. I don't need to add nausea from stopping my "cocktail" as I call it! It's not so much myself that I worry about, as the other travelers around me. I'm sure they would rather I didn't share my morning breakfast with them. Not to mention the hassle of an emergency landing if I tried to jump out of my seat to make it to the delightful airplane restroom and subsequently pass out, hitting my head on the arm-rest of the poor business man next to me. Hypothetically of course! By the way, I don't think of myself as a pessimist. More a realist with a worriers perspective!
So, I'll go drink my lovely cup of coffee and mull it over. To med or not to med. Wish me luck!
“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him." John 3:16-17
Amy
Tuesday, March 26, 2013
Rollercoaster of Emotions...
Apparently my body didn't get the memo about me being a princess. This week has been miserable and it's my birthday week. Yes, I take an entire week for my birthday. I am a princess after all! Some of it is probably my fault. I did clean and scrub cupboards yesterday. As an almost 27 year old, I feel I should be able to do tasks like these. As a POTSie, I should know better. As a result, I was awake most of the night with head pressure, vertigo, tachycardia, and some intense burning in my stomach. These days it seems if my POTS acts up, so does my stomach. On a positive note, my blood pressure was nearly perfect! Hooray for that!
Enter emotions... I'm excited and terrified for this trip to Mayo. I'm excited at the thought of getting answers and hopefully help. I'm terrified of what the answers might be or worse that I still won't have answers. I'm trying to prepare myself for all of the possibilities. I know there isn't going to be a magic pill that makes me feel like a new person over night. I'm terrified of what diagnoses I might get. I know that's silly, but for some reason putting a label on the issue makes it that much more real. I'm even more terrified that I'll hear those dreaded words, "Everything looks fine." I doubt that will happen, but I've heard those words too many times. I think it's a weird experience for doctors when they give a patient what they view as good news and that patient bursts into tears. How can every test look fine when I feel so close to death?
OK, time to push those nasty thoughts back into the dark hole where they belong. I'm finally getting the help I so desperately need! Plus a little trip with my husband! And, it's my birthday week! Another year older, another year bolder! What a year it was! This time last year, I was announcing to the world that I was having another baby! Life does not get any better than that moment when you first hold your child! It sometimes amazes me when I think of how quickly life can change. I went from that amazing moment when my daughter was born in September, to honestly feeling like my body was shutting down in December. I spent Christmas Day praying and wondering if I would have to get a feeding tube. I hadn't been able to eat any solid food for weeks. I've come so far since that day. I have major setbacks (like this week), but it's still nowhere near where I was Christmas Day. I'm extremely hopeful that with some help, my body will get back to "my normal" in no time! Maybe I'll even feel better than I've felt in years. A girl can dream right?! This next year is going to be a good one. I have so many things to look forward to and I can't wait to see what 27 has in store for me! Hopefully more ups than downs!
Enter emotions... I'm excited and terrified for this trip to Mayo. I'm excited at the thought of getting answers and hopefully help. I'm terrified of what the answers might be or worse that I still won't have answers. I'm trying to prepare myself for all of the possibilities. I know there isn't going to be a magic pill that makes me feel like a new person over night. I'm terrified of what diagnoses I might get. I know that's silly, but for some reason putting a label on the issue makes it that much more real. I'm even more terrified that I'll hear those dreaded words, "Everything looks fine." I doubt that will happen, but I've heard those words too many times. I think it's a weird experience for doctors when they give a patient what they view as good news and that patient bursts into tears. How can every test look fine when I feel so close to death?
OK, time to push those nasty thoughts back into the dark hole where they belong. I'm finally getting the help I so desperately need! Plus a little trip with my husband! And, it's my birthday week! Another year older, another year bolder! What a year it was! This time last year, I was announcing to the world that I was having another baby! Life does not get any better than that moment when you first hold your child! It sometimes amazes me when I think of how quickly life can change. I went from that amazing moment when my daughter was born in September, to honestly feeling like my body was shutting down in December. I spent Christmas Day praying and wondering if I would have to get a feeding tube. I hadn't been able to eat any solid food for weeks. I've come so far since that day. I have major setbacks (like this week), but it's still nowhere near where I was Christmas Day. I'm extremely hopeful that with some help, my body will get back to "my normal" in no time! Maybe I'll even feel better than I've felt in years. A girl can dream right?! This next year is going to be a good one. I have so many things to look forward to and I can't wait to see what 27 has in store for me! Hopefully more ups than downs!
"For whosoever shall call upon the name of the Lord shall be saved." Romans 10:13
Amy
Thursday, March 14, 2013
Sunshine and Blood-work...
Look out Arizona, I'll be there soon! The blood-work, pokes, and prods are just a small price I have to pay for a little sunshine and vacation time! I finally received my Mayo packet in the mail. Nothing super new or unexpected. I meet with Dr. Goodman bright and early on Monday morning for a consultation. In past appointments with him, he added more tests after this consultation. For anyone planning a trip to Mayo (especially if you are traveling a great distance), plan on being there for a week. It's not unusual for doctors to add more tests into your schedule. The only other thing he has planned right now is the full autonomic screening. Ugh! I was hoping I wouldn't have to repeat this, but I guess I'll suffer through. The packet wasn't specific about which tests are included in this screening but I'm assuming it will be similar to the screenings I've had in the past. The Tilt Table Test (hate this one, it makes me feel awful), the Sweat Test (tolerated this ok, just weird skin tingling sensation), the Stress Test (also not fun), and the test measuring adrenaline (not sure of its name but it involves lying in a dark room for about half an hour, having blood drawn, and then another blood draw after standing). I'm probably forgetting some tests. The last time I had them done was in 2008. I'm sure these tests will completely wipe me out and this really won't be a vacation at all, but I'm just looking forward to soaking in some sunshine and enjoying some quality alone-time with my hubby!
Here on the farm, it's feeling like spring! My favorite time of year! The snow is melting (it will freeze again next week), the new calves are being born, and the birds are chirping a little louder! I've started spring cleaning my house, which is quite the project for a POTSie! There's a lot of resting involved, but it's always satisfying looking at a room and knowing I've scrubbed every little corner! So long winter dust-bunnies and cobwebs! This time of year always gives me a new energy for life! Seeing all the calves running and playing in the pasture, soon my tulips will start peaking through the once-frozen ground, it's as if the entire farm is being re-born! Have I mentioned how much I love it? Ha Ha! So this Mayo appointment is coming at the perfect time for me! I'm energized and ready to battle for some answers! Now the trick is to keep this energy! I'm sure it will be waning by this afternoon! ;-)
"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31
I know that's kind of a long verse, but I think it was written just for us POTSies! How fitting! :-)
Amy
P.S.
I added a new Links page with links to some of my favorite pages, support groups, and blogs. It's a work in progress, but hopefully it will be helpful!
Here on the farm, it's feeling like spring! My favorite time of year! The snow is melting (it will freeze again next week), the new calves are being born, and the birds are chirping a little louder! I've started spring cleaning my house, which is quite the project for a POTSie! There's a lot of resting involved, but it's always satisfying looking at a room and knowing I've scrubbed every little corner! So long winter dust-bunnies and cobwebs! This time of year always gives me a new energy for life! Seeing all the calves running and playing in the pasture, soon my tulips will start peaking through the once-frozen ground, it's as if the entire farm is being re-born! Have I mentioned how much I love it? Ha Ha! So this Mayo appointment is coming at the perfect time for me! I'm energized and ready to battle for some answers! Now the trick is to keep this energy! I'm sure it will be waning by this afternoon! ;-)
"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31
I know that's kind of a long verse, but I think it was written just for us POTSies! How fitting! :-)
Amy
P.S.
I added a new Links page with links to some of my favorite pages, support groups, and blogs. It's a work in progress, but hopefully it will be helpful!
Tuesday, February 26, 2013
Hooray!!!!!
To say I'm excited would be the understatement of the century! I got a call from Mayo Clinic this morning and I finally got my appointment! I will be going to sunny Arizona in the middle of April! Yay for sun! The above picture is one I took in our yard a couple of winters ago. It's a reminder of how sudden and severe North Dakota winters can be! Usually, by April our temperatures are much more mild, but we can still get some extreme snow storms! A break will be surely welcomed (even if it means days of medical tests)!
I'm not sure yet what kind of testing they have planned for me. I'll know more once I get the packet in the mail. The scheduling receptionist told me to plan on being there for the entire week so I think they'll be running me through the ringer! Bring it on! What are a few more pokes? I just want answers!
So now I wait and plan and educate. Waiting for appointments can be torturous! In this case, it's probably just as well. I'll need to plan for a place for my girls to stay for a week, book flights, find motels... I also intend to keep educating. I like going to these appointments armed with information and questions. I normally have a list of conditions to discuss, medications to try, and tests to run. We have to advocate for ourselves! Why does healthcare have to be such a battle?! I'm also going to start putting together a page filled with advice on how to have successful doctor appointments. It will be a good reminder for me. Lord knows I've had plenty of disappointing appointments! There is no sure way to have a good appointment. You can be completely prepared and still leave in tears, but there are ways to make them go smoother. The worst feeling is leaving an appointment feeling like it would have gone better if only you had been more prepared!
In the mean time, I'll keep you updated on how I'm feeling. Hopefully, I continue to do well! I'll also fill you in once I know the types of tests they intend to run me through!
"This is the day the Lord has made; let us rejoice and be glad in it." Psalm 118:24
Amy
P.S.
My Potsie Pet Peeve of the day: Fixing my hair! I'm half tempted to just chop it off! Holding my hands above my head makes me extremely light-headed! Look out G.I. Jane buzz cut, here I come! Just kidding! My head is too lumpy for that, but it would be nice! :-)
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