For those of us in the chronic illness business, a flare is a period of time when our symptoms are markedly worse than usual. Starting last night, I'm having a flare within a flare. Lucky me!
On December 3, 2012, I woke up from gallbladder surgery and my life was different. I knew it the moment my eyes opened. My body was in full attack mode, the start of Flare #1. I've been doing much better the last month or so. Definitely not my old self, but I'm functioning and caring for my precious babies without assistance and that's a win in my book! Then last night my body decided to give me a little reminder flare. Just in case I forgot how bad it can be.
This episode wasn't as bad as the episodes I experienced last December, but it was bad enough. I felt off all day yesterday. I can't pinpoint exact symptoms, just a general yuck feeling. Tired, nauseous, just off! Then last night, I had an episode after eating supper. It's interesting to me that my bad episodes are either shortly after supper or just as I'm drifting off to sleep. Anyways, I ate and shortly after I got that all too familiar wave of tingles and chills. This is always how these episodes start. Soon after, I got extremely nauseous and my resting heart rate went to 132 beats per minute (it's usually closer to 60). Then, I got the strange burning sensation in my stomach. It's not like an indigestion burning. It's more like the way your muscles or lungs burn after a workout. Like they are starving for oxygen. Luckily, this all passed within an hour, but I was left exhausted.
This morning I'm left with the after effects. Some lingering nausea, very weak arms, and a heart that wants to race every time I lift my finger. So, I'm loading up on Gatorade and forced myself to exercise, which is not easy to do when your heart is racing just sitting down! I'm extremely proud of the fact that I now have my Body Mass Index back into the normal range and I intend to keep it there! There is so much in my body that I can't control, so I am adamant about controlling the things I can. If there's one positive that's come from this flare, it's that I'm now more focused on living a healthy lifestyle (I've got a long ways to go though)!
On a side note, this is the worst episode I've had since my body started making its turn around. Dr. Goodman had me stop taking Zyrtec and Zantac (which I had started when I suspected I might be dealing with a mast cell issue) so we could focus on correcting my deficiencies. I'm not sure if it's coincidence or not that this bad episode comes after I stopped those medications. It's the only change I've made that may have caused this flare within a flare. Not that my body ever needs an excuse to act wacky! Dr. G. really wanted me to give these supplements three or four weeks before adding in the "Mast Cell Cocktail" so I'm going to try my hardest to stick it out. As Dori from Finding Nemo would say, "Just keep swimming!"
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
Amy
P.S. I hope I'm not being too much of a complainer with my posts lately, but this blog is a great way for me to journal these episodes! I'm very forgetful and by next week I probably won't even remember that I had an episode! :-)
Tuesday, April 30, 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
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