Well Hello Again...

It's been awhile! I think I've taken the stance of "If you don't have anything nice to say, don't say anything at all." I've definitely not had the miraculous recovery I was hoping for and my improvements have been small and slow. Logically, I knew this was to be expected but it's disappointing nonetheless.

I'll start with the positives. My energy level has improved. I would guess this has to do with the B12 supplement. I'm still taking an oral supplement and I think within the next month or so we'll be re-checking my levels to see if there's been an improvement. As I mentioned in an earlier post, my nausea has also improved. It's no longer 24/7 which is amazing! My "extreme episodes" which usually happen at night are also becoming more rare. Some nights I feel like I'm right on the verge of one of these episodes, but the Allegra/Zantac combination seems to put an end to it. I can feel it the moment those meds kick in and my body instantly relaxes, allowing me to pass out and sleep through the night! Hooray for that!

Logically, I know I've come leaps and bounds since last December. I've had a very active summer so far. Most active days cause me to feel a little like road kill the next day, but it's so worth it for the memories made.  In December, I was so ill that being active wasn't an option. I wasn't able to shop for my girl's Christmas gifts and when they opened them, I watched from the couch. It was the worst form of torture ever, right behind waterboarding! 

So, overall I'm doing much better but I'm still dealing with a ton of daily symptoms that are making me miserable! My everyday symptoms are congestion, ear ringing, tachycardia, shortness of breath, red irritated eyes, sore dry throat, painful joints, burning in my mouth and tongue, burning in my stomach, and palpitations. I've also been having days with extreme weakness and tremors in my arms. It's a lot like having the flu for the past seven months.

After discussing these symptoms with Dr. Goodman, he decided to add a small dose of Zyrtec to my cocktail. Hopefully that will take care of some of these symptoms. For now I'll say positive and push on and I promise to post again soon!

"But the Lord is my defence; and my God is the rock of my refuge." -Psalms 94:22

Amy

A Terrible Night...

Ugh! One step forward, two steps back. And so the dance that is my life continues. Yesterday was not a great day. I woke up with very weak, stiff hands so I could tell my body was upset about something. I sure wish we could figure out what exactly caused my entire system to get its panties in a bunch. I'd be more than happy to do whatever I can to fix it!

I powered through the day and did alright. I had moments where I felt pretty good and moments where I felt like crud! Then I went to bed... My body entered attack mode. I think I've mentioned this before but it seems that all of my really bad episodes happen as I'm trying to fall asleep at night. I don't understand that.

I'm starting to recognize the signs of these episodes and had an idea my night was not going to go well. My arms were very weak and my stomach was burning/hurting and gurgling. I ate a lot of carbs yesterday so I'm sure I brought this on myself. Bread is like a drug to me. I know it's bad, but it's so soooo good!

So, as I'm lying down my heart decides to be crazy. I wasn't having tachycardia but I was having palpitations. It was doing some crazy flip-flops and each beat felt like my heart was going to come out of my chest (even though it wasn't racing). I didn't take my blood pressure because sometimes those numbers can just make me panic but I would guess my pulse pressure was really low. Pulse pressure is the difference between the top number and bottom number on your blood pressure by the way. I was also having some breathing problems. It feels like I have to concentrate to breath. Then, just as I start to drift to sleep my body forgets to breath and I end up jerking awake and gasping for air for a good thirty seconds. Then, the legs started feeling crazy. The muscles got very uncomfortable and they went tense and would not relax. The episode ended with waves of tingles and goosebumps over my entire body and a lot of stomach gurgling. Then, I finally drifted off to sleep! I can't tell you how many times I've chanted "Just go to sleep, you'll be fine in the morning" to myself.

Just for the record, I don't do any form of illegal drugs and this was not a panic attack. Haha! So many of us Potsies (myself included) are misdiagnosed as having anxiety. The biggest relief of my life was my first trip to Mayo when Dr. Fealey looked at me and said, "This is not anxiety. It's not in your head and it's nothing you can control. These are very real reactions caused by dysautonomia." I, of course, broke down in tears because I'm a lady and that's what we do!

Happily, today is a new day! I'm going to avoid carbs and enjoy the beautiful day I have been blessed with. Those episodes are scary and I hate not having control of my body, but they also put everything back into perspective. It was a privilege to wake up this morning (a lot of people didn't) and I will make the most of this day.

"For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God." Ephesians 2:8

Amy

Finding Positives During a Zombie Apocalypse...

Yup, that's how my mind is working today! I don't even believe in the zombie theory, but last night I felt like I was the victim of an apocalypse. A gory, brutal apocalypse.

We had an amazing, long weekend getaway with my hubby's family (see picture below). It was a true reminder of how far I've come since December. I was able to participate (and eat) the entire weekend and even had a few milestone moments. The best moment would have to be my first sip of alcohol in well over a year. I'm not a heavy drinker but I enjoy sitting on the deck with a beer in the summer so I was ecstatic to drink half of a Bud Light Lime! Oh, the simple things in life!

It all caught up to me when we got home yesterday afternoon. Enter, zombie apocalypse and not being able to get off the couch! Of course, my mood followed and I was a grumpy mess until I gave myself a proverbial kick in the pants. Pity party over! I just had an amazing, active weekend and in December I could barely get off the couch. It's frustrating to have a simple family weekend completely wipe me out, but it's not even comparable to how I felt just a few months ago. The best part is that after a good nights sleep, I felt much less like a victim of a zombie apocalypse and much more like a survivor! I've even been able to do some laundry and unpacking today.

As far as the MCAD cocktail, when changes are slow and subtle it's hard to notice them. I feel like my nausea is improving from 24/7 to maybe 5/3! That's pretty incredible! In all honesty, it has not been the miracle regimen I hoped it would be. I'm still dealing with some menacing symptoms, but I'm functioning so much better! I pray that I will someday be back to where I was pre-gallbladder removal but am so happy to be where I am today. If this has to be my new normal, I can live with that.

"The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance." 2 Peter 3:9

Amy

First Day on the Cocktail

I started the cocktail of Cromolyn, Pepcid, and Allegra yesterday. It can take two to six weeks to start noticing improvements so I'm not surprised that I haven't noticed anything yet. I did have issues with the Allegra and Pepcid yesterday.

I took the Allegra in the morning and shortly after had a little episode. A wave of nausea, tingles all over, tachycardia, goosebumps, muscle weakness, etc. Then, I took the Pepcid at night and had issues with that as well. I kept having adrenaline surges as I was trying to fall asleep. Everyone has those moments right as you drift off to sleep when it feels like you're falling and you jerk awake. These adrenaline surges are similar to that but include tachycardia, gasping for breath, and sweating. Then I had another episode that was a mild form of the same episodes I dealt with after surgery.

It's common for people with Mast Cell issues to have sensitivities to medications. The pharmacy gave me the generic forms of the Allegra and Pepcid and I'm thinking that's what the issue was. A lot of MCAD patients react to the additives used in generic forms of medications. So, my hubby is going to get the name brand forms of those drugs and I'm hoping that makes all the difference!

On a side note, I had a great weekend! The girls and I went to my hometown for my cousin's graduation and it was great to see everyone! I've always felt so blessed to have grown up in a small town! At the graduation, I was bombarded by caring people. I received hugs and pats on the arm. I was asked sincere questions about how I'm feeling and what I've been going through. I was given many well wishes and reminded of all the prayers I'm still receiving. Unbelievable! That little community is so supportive and it was wonderful to be back! Thank you all so much!

"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind." 1 Peter 3:8

Amy

A New Cocktail...

Well, I'm starting a new cocktail. Not exactly the kind of cocktail I'm really craving, but hopefully it'll do the trick regardless. It's the Mast Cell Activation Disorder cocktail. That's a mouthful! Why can't these conditions have nice short names. Now, when a doctor asks if I have any known conditions I have to rattle off Postural Orthostatic Tachycardia Syndrome and (if these meds work) Mast Cell Activation Disorder. That mouthful will be shortly followed by a dumbfounded expression from the hypothetical Doc as most have never heard of either condition.

The cocktail consists of Cromolyn, Pepcid, and Allegra. The Cromolyn is a liquid that I will mix with water and take four times a day (30 minutes before each meal and at bedtime). It is used to prevent the mast cells from degranulating which is a fancy word for spilling their nasty toxins into my system. The Pepcid and Allegra are just your regular old H1 and H2 blockers. They block the histamine that the mast cells release as the Cromolyn won't be able to completely stabilize things.

I'm praying this will help as these past few weeks have been miserable. The shortness of breath has still been better and I'm thanking God for that! I didn't even realize how much of an issue it was until it was gone. Amazing and so thankful for that! The rest of my symptoms are being more stubborn. The nausea, brick in gut feeling, muscle weakness, tinnitus, puffy eyes, tachycardia, extremely dry throat and skin, etc. has all been terrible since I've been back from Arizona. I think it's probably a combination of seasonal allergies along with all the other things I have going on. Whatever it is, it's miserable.

For Mother's Day we took our kiddos to the zoo. Our toddler LOVED it! She didn't want to leave the Prairie Dogs which makes sense since her best friend is her stuffed Prairie Dog named Baby Jack. He's the ugliest stuffed animal I've ever seen, but she adores him! We were only there for a couple of hours but I felt as if I had walked for days! I had a migraine, my heart rate was through the roof, extreme muscle and joint pain, terrible nausea, and lots of pressure in my head and ears. It gets frustrating! Shouldn't a mom in her 20's be able to take her girls to the zoo without feeling like she's been hit by a truck? I'm sure it will take me a week (or more) to recover from that little outing. It was completely worth it for the memories made and time spent with my little family, but frustrating nonetheless. One of these days I may need to swallow my pride and use the train tours or (gasp) use a motorized scooter, but that's a topic that deserves a post all it's own. When you appear healthy on the outside, it's hard for people to understand you might actually be disabled! I'm afraid if I cave to the scooter concept I would ride around with a middle finger in the air in response to the dirty looks ignorant bystanders might give me. I should mention that I'm normally fine walking. I only struggle when it's excessive (such as at a zoo or shopping). Considering this new cocktail is going to work, I won't need to worry about a scooter! The power of positive thinking! :-)

"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28

Amy

Too Good to be True?

I'm almost afraid to write this post. I've got some good news and I'm afraid I'll jinx it if I write about it too soon! I'm praying its not just a fluke, but a sign of some real progress!

To make a short story long, I live in a two story farmhouse. My hubby and I sleep on the main floor and our girls sleep upstairs. Not ideal for many reasons. The main issue is that I've always had a terrible time with stairs. About half-way up, my heart begins to race, my lungs and legs burn, I start gasping for air, and then things go black. This leaves me with a couple of options: either sit down until my body stops hating me or go as fast as I can and hope I make it to the top without passing out. I feel the need to explain that this is more than an "out of shape" issue. I've always had this problem and just chalked it up to being a POTSie. Needless to say, I usually avoid the stairs.

Normally, the hubby is responsible for carrying the girls upstairs and tucking them into bed and getting them up in the morning. It's actually one of the hidden blessings of this illness. I'm home with the girls all day, so I love that they get this special time with their dad to start and end each day. Anyways, things have been hectic for him this week so the duty has been left to me. Last night, our two year old fell asleep on the couch before I could get her to bed. I knew the little zombie wasn't going to wake up and walk up the stairs to her room so I only had one option. I picked her up (along with her nightly essentials of her snuggle blanket, stuffed ladybug, and stuffed prairie dog named Baby Jack (don't ask!)), said a prayer, and started up the stairs. I got to the top and felt terrible. Something was wrong and I felt really off. It felt as if my body was forgetting to do something really important. I stopped at the top of the stairs and realized nothing was wrong, something was actually right! I wasn't gasping for air and it felt terribly unnatural! My heart was still racing, but my legs and lungs didn't burn and my breathing was normal. This is literally the first time this has happened in my entire life.

When I went to get her up this morning, still no gasping! You know you've been sick too long when you panic from feeling normal! Haha! I'm positive this has to do with the B12. One of the main symptoms of a B12 deficiency is shortness of breath. B12 plays a role in making mature, healthy red blood cells. Red blood cells carry oxygen throughout the body. No wonder I've always felt starved for oxygen. I'm not pretending B12 has been my miracle pill. In many ways, I've felt much worse the past couple of weeks (nausea, tinnitus, burning eyes), but this is a major development for me. This is a terrible symptom I've dealt with my entire life which may have just been a simple B12 deficiency issue. Oh, how I wish we would have caught this sooner!

On a side note, I'm working on a B12 post. I'm reading a book and some published studies first. B12 deficiency is a real, serious issue. It's not a fad diagnosis. My blood work showed evidence of a serious B12 problem all the way back in 2007 (enlarged red blood cells and anemia) and no doctors caught it. I'll get more into that with the B12 post, but it's frustrating nonetheless. For now, I'm going to be ecstatic about this new development. I'm letting my mind go crazy with thoughts of being able to jog in the near future! Dear God, please don't let this be a fluke! :-)

"The Lord upholds all who fall, And raises up all who are bowed down." Psalm 145:14

Amy

Flare, Flare Go Away...

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! :-)

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     

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

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

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

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

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 

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! 

"For whosoever shall call upon the name of the Lord shall be saved."  Romans 10:13

Amy

I've Figured It Out!

The last couple of days have gone backwards for me.  This strange pressure feeling in my head has become more intense, resulting in my ears ringing louder.  It's not so much a sinus issue.  It feels like I have too much fluid around my brain or something.  Sometimes the pressure is behind my eyes, sometimes deep in my ears, sometimes at the base of my head, and sometimes in my forehead.  It's uncomfortable to say the least.  I also get some vertigo as the pressure builds.  I've also been waking in the night with tachycardia.  I'll be sound asleep and wake abruptly soaked in sweat and with a heart that's trying to escape my chest.  I'm trying to push through and am convinced things will calm down again, rather than get worse. 

These "down" times can be more difficult mentally than they are physically.  I often start to ask God what he's trying to tell me.  I'm a firm believer in the fact that we all go through experiences in life for a reason.  There is a reason God decided I should live with a chronic illness.  Well, yesterday I figured it out!

My life with a chronic illness would be perfect if I had a maid, cook, nanny, chauffeur, assistant, etc.  God must be calling me to be a celebrity... or perhaps a princess.  Definitely a princess.  Gosh, I'm slow!  All this time I thought it had to do with suffering on Earth to earn a lovelier place in Heaven.  Nope!  I was just born to be a princess!  Ha!  So, if anyone needs me, I'll be sitting on my Royal Couch with my Royal Coffee waiting for my Royal Entourage.  They better get here fast, my house is a disaster!!

"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11   

Princess Amy

The ABC's of PVC's...

                            

Image from Wikipedia.

Everyone gets them at some point in their life.  That yucky flip-flop feeling in your chest.  I can only describe it as a sensation that your heart forgot to beat or maybe it decided to beat a little too hard.  It's uncomfortable and can take your breath away or make you cough.  If you're like me, it brings with it a little anxiety.  Either there's a fish flopping around in my chest or I'm possibly having a heart attack and about to die.

These are called Premature Ventricular Contractions or PVC's.  They occur when the lower portion of your heart begins to contract before it is completely filled with blood.  Normally, the sinus node in your heart sends an electrical signal to tell the heart when to contract, but sometimes those lower chambers get a little anxious and decide to contract on their own too early.  It's kind of like if the drummer in a band suddenly played a few beats really fast.  It would throw off the rhythm of the entire band.  The lower chambers contract too quickly and it disrupts the rhythm of the rest of the heart, causing the flip-flop sensation. 

I get these quite frequently and I've gotten more used to them.  Then I have days like Monday.  I had six of these nasty things in one day.  I'm sure there are people who've had more, but it started to make me rather panicky.  I can handle one or two a week, but six in a day is a bit much.  I was starting to get slightly worried that my "drummer" was really starting to act out and wanting to be a solo performer.  I'd much rather he just stick to the band.  He must have agreed because I haven't had one of these since.

On a side note, if you ever have six of these in one day you should probably go to the doctor.  I know I sound like a hypocrite now and I'm sure I'll get some grief for not going.  It was cold on Monday!  Who wants to go out in the cold?  OK, probably not funny but I am glad things seem to be back to normal now.  I should add that nearly everyone experiences a PVC at some point in their life.  For normal, healthy people they are nothing to worry about.  Not dangerous at all, just uncomfortable.  However, if you have a heart condition or experience flip-flops frequently, you should probably get it checked out.  No worries, I plan on mentioning this to Dr. Goodman when I go to Mayo!  Hopefully, my drummer behaves until then!

"When I am afraid, I will put my trust in Thee." Psalm 56:3

Amy     

My Cup Overfloweth...

I've said this before, but I feel the need to repeat it now.  One of the greatest things we can do in life, is give of ourselves to help others.  Whether chronically ill or perfectly healthy, there is nothing better for the soul than helping to better the life of someone else.  I do this by volunteering for a Foundation that helps sick children.  On Saturday, we held our local annual fundraiser and it was amazing!  The generosity displayed by so many absolutely takes my breath away and seeing the smiles on the faces of the children is so heart-warming.  Needless to say, I completely over-did it and boy did I pay...but it was completely worth it and I'd do it again in a heartbeat (no pun intended)!

By the time I left the fundraiser, I literally could barely walk.  Every joint in my body was in excruciating pain.  This is all something new to me with this flare.  I've always dealt with knee and hip pain (on and off) throughout my life.  Doctors wrote it off as due to the fact that I grew so fast, but here I am well out of my growing phase and still dealing with the pain.  However, with this last flare, every joint in my body is in pain.  A kind of pain that is breath-taking and makes it nearly impossible to move.  When I got home from the fundraiser, my hubby actually thought I had fallen and injured myself because I could barely move and had tears in my eyes.

The next day, I was getting ready for church and had an episode.  Not surprising considering the hectic week before.  Anyways, I had a moment of pure genius and decided to take my blood pressure during the episode (flushing face, cold sweats, racing heart, stomach ache, followed by a delightful bowel movement).  I was horrified when I saw the reading: 175/124!!  What!?!?!  My blood pressure is always low (around 105/60)!  So, I took it again and got the same reading!  Within minutes of the episode ending, my blood pressure returned to normal.  How crazy!  I can't believe I had never thought to take my blood pressure before.  I can be a bit of a worrier so I tend to avoid my numbers.  When I was first diagnosed with POTS, I became a bit obsessive about my pulse and blood pressure and would FREAK if my numbers were crazy.  Now, I try to leave the BP cuff in the cupboard and focus more on how I'm feeling.  One of the crazy things about this chronic illness is that my vitals can look completely normal on days that I feel terrible, and my vitals can be complete crap on days that I feel great.  Such a mystery!  But, I feel like I'm understanding it more each day!

"Do not withhold good from those to whom it is due, when it is in your power to do it." Proverbs 3:27

Amy

P.S.
  I got my new medical bracelet and I love it!  I'll do a post about it later!  :-)

I'd Break Something If I Could...

I swear I'd feel better if I could just break something.  Too bad my arms have been too weak lately for me to carry through with it.  It's probably for the best.  I really like my red plates and they're the most tempting for me to throw across the room!  Do you ever get so frustrated and fed up that you just want to smash something?  I hope it's not just me! 

This past week has been filled with ups and downs and new symptoms.  It's so strange to me how I keep going from symptom to symptom.  I can not wait to get to Mayo in April so we can hopefully figure this all out!  Some hours my arms are so weak, I can barely lift them.  Simple tasks like running a wash cloth across the table make my arms burn as if I'd just done one hundred push-ups!  A couple hours later, they'll be fine and I'll be able to pack a laundry basket up the stairs.  I just don't understand it! 

Two days ago a new symptom appeared!  It's not the most troubling symptom in the world, but it's annoying!  A toe on my right foot won't stop twitching!  Now, before you roll your eyes or double over laughing, really think about it!  It was twitching so bad last night, I couldn't sleep and today my entire foot/ankle area is sore because of it!  Urgh!!  Really?  As if the racing heart, head pressure, ringing ears, stomach aches, and cold sweats aren't enough, now my toe has to twitch!  OK, now I'm laughing too but it's really not that funny!

At least I woke up to a blizzard this morning (see above picture).  The dreadful weather matches my crappy mood!  It also makes it easier to be stuck inside.  There is nothing worse than being stuck on the couch when the weather is gorgeous.  When you wake up to wind and snow, it doesn't seem so bad!  Sorry for the Debbie Downer post.  I promise tomorrow I'll be back to my normal, spunky self!  :-)

"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you."  1 Thessalonians 5:16-18

Amy