Just For Laughs...

Can I please be back at this beach in Maui?  Yesterday was just one of those days! 

I woke up feeling AMAZING!  These days have been few and far between lately so I knew I had to take advantage!  I should start by mentioning that I live on a farm.  I'm fortunate that I live relatively close to a decent shopping town.  After a twenty mile drive, I have access to Wal-Mart, some grocery stores, and a few select clothing stores.  Lucky me!  Anyways, this twenty mile drive makes shopping trips a little bit of a process.  I try to cram all of my errands into one day so I don't have to make multiple trips in a week.

Welcome to the chaos of my life.  I start by getting myself and the girls all dressed up.  These days are rare for us so it's fun to dress up nice and have a girls day out on the town!  Then I feed the baby her bottle, pack the diaper bag (complete with warm water, diapers, formula, snacks, juice, wipes, blankets, burp rags, etc).  I have a bit of a problem with over-planning and always worry that I'll forget something.  I load the girls into the car, turn on "Tangled" for my toddler to watch on the drive, and we're off!

This usually goes without a hitch, but yesterday (as I mentioned) was just one of those days!  We've all had them.  The days where nothing goes right and it seems as if your head might not actually be attached to your body!  Yup, that was me!  The frazzled, POTSie, Mom with no brain and my head in the clouds!  I get all the way to town before I realize my wallet is back at home.  I have no credit cards, drivers license, or cash.  Ugh!  So, I call my amazing hubby who works in town and he agrees to get me some cash and meet me at the mall.  I'm a lucky lady to have him!  Wonderful!  I put the cash in my purse, do some shopping at the mall, and then we meet the hubby for lunch.

After lunch, I run to my least favorite place on the earth (Wal-Mart).  Nothing against shopping there, it's just always crowded, I always make 80 trips back and forth across the store trying to find the things I need, and then proceed to stand in line for an hour because only four of the twenty check-out lines are open.  I gather up all the necessities in life (formula, diapers, fingernail polish, just the basic things moms can't live without)!  It's finally my turn at the check-out and half-way through scanning my "necessities" I realize the cash my hubby so nicely brought to me is in my purse...in the car.  You have got to be kidding me!!!  Anyone with POTS (or any other chronic illness) can understand how this sent me into an absolute tailspin!  The angel of a checkout lady said it was no problem and she would hold the items for me.  I proceed to race out to the parking lot with my cart filled with two little girls and a car seat.  Just a little reminder, my heart races to about 120 beats per minute just by standing in place.  I can't even imagine how fast it was racing after sprinting to the parking lot and back with a cart full of kids!  Wow!  Just another "simple" shopping trip in the life of a POTSie!

That beach is looking better and better all the time!      

"Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved."  Psalm 55:22

Amy

P.S.
   My current good-read: "A Week in Winter" by Maeve Binchy.  I'm only about half-way through it, but it's very enjoyable.  It's set in west Ireland and it's one of those books that follows about ten different characters.  Very enjoyable so far!

Hooray!!!!!

To say I'm excited would be the understatement of the century!  I got a call from Mayo Clinic this morning and I finally got my appointment!  I will be going to sunny Arizona in the middle of April!  Yay for sun!  The above picture is one I took in our yard a couple of winters ago.  It's a reminder of how sudden and severe North Dakota winters can be!  Usually, by April our temperatures are much more mild, but we can still get some extreme snow storms!  A break will be surely welcomed (even if it means days of medical tests)!

I'm not sure yet what kind of testing they have planned for me.  I'll know more once I get the packet in the mail.  The scheduling receptionist told me to plan on being there for the entire week so I think they'll be running me through the ringer!  Bring it on!  What are a few more pokes?  I just want answers!

So now I wait and plan and educate.  Waiting for appointments can be torturous!  In this case, it's probably just as well.  I'll need to plan for a place for my girls to stay for a week, book flights, find motels...  I also intend to keep educating.  I like going to these appointments armed with information and questions.  I normally have a list of conditions to discuss, medications to try, and tests to run.  We have to advocate for ourselves!  Why does healthcare have to be such a battle?!  I'm also going to start putting together a page filled with advice on how to have successful doctor appointments.  It will be a good reminder for me.  Lord knows I've had plenty of disappointing appointments!  There is no sure way to have a good appointment.  You can be completely prepared and still leave in tears, but there are ways to make them go smoother.  The worst feeling is leaving an appointment feeling like it would have gone better if only you had been more prepared!

In the mean time, I'll keep you updated on how I'm feeling.  Hopefully, I continue to do well!  I'll also fill you in once I know the types of tests they intend to run me through!

"This is the day the Lord has made; let us rejoice and be glad in it."  Psalm 118:24

Amy

P.S.
   My Potsie Pet Peeve of the day: Fixing my hair!  I'm half tempted to just chop it off!  Holding my hands above my head makes me extremely light-headed!  Look out G.I. Jane buzz cut, here I come!  Just kidding!  My head is too lumpy for that, but it would be nice!  :-)  

 

Ah Decisions...

Decisions, decisions... Life is full of them!  If you're a member of my family, you're not good at making them.  Deciding where to eat can be an hour long process filled with "I don't care" and "Whatever you want."  On a vacation to Charleston, SC we literally walked up and down a street for nearly an hour because no one would make the final call on which restaurant to try.  Needless to say, decision making is not something that comes easy to me.  I have a hard time being assertive and spend too much time worrying about the "what ifs".

I mentioned in my last post that my hubby was going to be spending an evening with a group of our college friends.  I so wanted to go but with my current health, I knew I would pay for it later.  Let the decision making begin.  Mental health versus physical health.  For once in my life, I can say this wasn't a very hard decision.  Mental health won!  If I didn't get out of our house soon, I was going to lose my mind!  I didn't stay out late and was only out of the house for a couple of hours but it made all the difference.  Yesterday, I felt like a truck had hit me.  I was so exhausted I could hardly keep my eyes open, but my heart was happy!  Sometimes, it's completely worth going through a little physical misery just to heal the heart.

If you live with a chronic illness, you understand the battle between mental health versus physical health.  It is a constant one.  Trying to find a balance between feeling well and actually living your life is exasperating to say the least.  Most of the time, I choose my physical health.  Life is much easier if I stick to my routine.  It is crucial that I keep myself feeling well enough to care for my two young daughters.  However, every once in a while it is necessary to chance feeling like crap so that I don't go stir crazy!  I love my girls and I like to think I'm a pretty good mom, but even I can only take cartoons, potty training, bottle making, and poopy diaper changing for so long!

So today, I'm still tired but also so refreshed!  I'm exhausted but have a new energy for life.  I think I made the right decision!

"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths."  Proverbs 3:5-6

Amy
 

Blessed...

One of the hardest aspects of living with a chronic illness is the the topsy turvy emotions that come along with it.  Anyone who has been sick for an extended period of time can attest to this.  It's an hour by hour journey with no rhyme or reason.  This current "flare" that I'm experiencing has sent me into a whirlwind and to be honest a bit of a depression.  I thought I had a handle on this monster and then it reared its ugly head and laughed in my face.  I'm now fighting a bigger battle than I ever would have envisioned with a much more complex illness.  My days are up and down.  In general, my health has been the same for about a month now but my emotions are another thing.  One hour I'm on top of the world and the next I'm bawling and feeling sorry for myself.

So, this morning I woke up feeling especially bluesy!  My hubby got a call last night that a bunch of our friends are getting together on Saturday.  I sooo want to be there but am not sure it's worth the tailspin that would surely follow from a day out and about.  So I pout, which solves nothing and makes both my hubby and myself feel worse!  Time to put on my big girl panties!  Now I'm about to share my sure fire way to get out of the bluesies as I call them!

1.  Get out of bed!  Laying around in bed helps no one!  If you want to get yourself in a full blown depressed mood, stay in bed because it will happen!  I don't care if you only move from the bed to the couch and stay in your flannel pj's, but get out of bed!  Trust me!

2.  Do some yoga!  This is a new discovery for me.  I have a very hard time with exercise (as you've read).  I have to do some very easy yoga moves but find that the stretching and breathing is extremely calming.  Pair this with some calm music and you are sure to feel refreshed!

3.  Read the Bible!  I'm guilty as someone who does not spend enough time on my faith.  I tend to go to God only in desperation and am blessed that He always seems to be there waiting for me.  Bible verses are extremely uplifting (not counting the one about cutting your wife's hand off if she grabs the privates of a man you are fighting).  That one is just strange and I'm not sure why anyone thought it necessary to include!  Haha!

4.  Which brings me to my next point.  Have a sense of humor!  Life is short, laugh!  It's a beautiful day and I feel like crap but it's my day and I can't get it back.  This is the only February 22, 2013 that I get and I will not waste it!  I will find the humor in life and enjoy it!

5.  This is a big one and will change your life!  Do something for someone else!  You can do this from home, from your couch even.  It can be big or small.  It can be an encouraging e-mail, a monetary donation, or a simple smile and wave.  I'm lucky enough to volunteer for the Make-A-Wish Foundation.  I work with an amazing group of volunteers and they always think of tasks I can do from home.  There is nothing more satisfying than feeling like you're improving the lives of others.  It's my belief that if we aren't making a positive impact on the world, we might as well not be here.

Do those five things and I guarantee, your mood will be improved.  But don't forget to sit down and really feel sorry for yourself every now and then.  Have a good cry!  Life can deal us some pretty hard blows!  But then you have to wipe the tears and live your life.  It might not be perfect, but it is yours!

"I've commanded you to be strong and brave. Don't ever be afraid or discouraged! I am your God, and I will be there to help you wherever you go."  Joshua 1:9

Amy

Hello all...

I apologize in advance for the length of this post, but I have to get you up to date on me!  That's nearly 27 years of info in one little post!  Overwhelmed yet?!  ;-)

Where to start?  I was born and raised on a cattle ranch and had the perfect family.  Loving parents and an older brother and sister.  I was the baby and beyond spoiled!  From an early age, I knew that I just didn't feel "good."  What I didn't know was why and if everyone else felt like this too.  At around the age of three I had an unexplained seizure and thankfully that has never happened again.  Through elementary school I was plagued with stomach troubles, infections, and one very serious case of pneumonia.  I could not keep up with kids my age and completely dreaded gym class.  The thought of trying to run (or even jog) a complete lap around a gym was enough to put me in tears.  However, I never brought this up to anyone because I had always felt this way and just assumed everyone else did too.  I also had some issues with my knees and bones.  I once tripped on the sidewalk and broke two bones in my foot.  My knees would easily "give out" on me for lack of a better term.  Doctors always chalked it up to how fast I grew and told me my muscles and tendons just couldn't keep up with my bones. 

Fast forward to High School and things got more difficult.  I badly wanted to be in sports and attempted one season of volleyball.  Why I would want to torture myself like that, I don't know!  Then, my senior year I tried to do a good deed and donate blood.  I drove to the site, walked inside, filled out the paperwork, and then they took my vitals...  The poor nurse was shocked by my heart rate and asked if I had ran to the building.  Needless to say I did not donate blood that day.  Still, slow Amy did not catch on and it didn't click that something might be wrong.

So on to college.  I met my now amazing husband my Freshman year.  At the time I met him I was dealing with an extreme (and embarrassing) case of vaginitis along with some scary symptoms of flushing, my skin getting burning hot (with no fever), and uncontrollable trembling.  I was going to doctor after doctor who would test me for yeast infections, find nothing, give me a random prescription, and send me home.  All of this with a new boyfriend!  He was amazing and even went to the appointments with me!  That all mysteriously disappeared and life went on.  The dreaded "Freshman Fifteen" started creeping up on me so the boyfriend and I bought gym memberships.  My now hubby was instantly concerned.  The "Over Sixty" group was passing me on the track and very little exercise made my hips hurt so bad I could barely walk.  So we started doctoring.  About a million doctors, tons of medications, a failed ablation, and finally a trip to Mayo Clinic later, I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS for short).

I learned to manage my symptoms with no medications.  My husband and I were married in 2009.  In 2010, our first daughter was born.  My heart rate was elevated through the entire pregnancy, but I managed it well and had no other difficulties.  Labor and delivery were a breeze!  After she was born, I felt the best I have ever felt.  POTS wasn't even something I thought about any more.  I still wasn't going to try to go for a run, but I was living a "normal" life.  In 2012, I got pregnant with our second daughter.  My heart rate was not a problem this time but I lost weight and was nauseous the entire pregnancy.  She was born in September and was perfect!  In November, I had a terrible gallbladder attack!  If you've never had one, it's worse than childbirth!  In December, I finally had surgery to remove that demon organ!  It was filled with tiny stones and I was glad to be rid of it!  However, as soon as I woke up, I knew something was not right.  My legs felt terrible!  I was right.  My body was at the beginning of a major shut down!  Every time I would eat even one bite of food, my body would go into shock: severe shaking, flushing of my face, chest pain, tachycardia, freezing cold but sweating, my leg muscles would go tense, the list is endless!  I went to the Emergency Room three different times and they could not find anything!  I was only able to handle broth, jello, and Gatorade.  I lost 25 pounds in a month and was miserable.  I could not take care of my daughters and was terrified that my life was never going to be the same.  Christmas Day came and I decided I had to try to eat.  Slowly and stubbornly I started eating.  It was awful.  My body fought me every step of the way and there were many times that I would sit, stare at my cup of soup, and cry because I did not want to eat it.  I finally decided to get help and e-mailed a doctor from Mayo Clinic.

That brings you about up to date.  I'm currently able to eat (Hooray)!  I'm still having some pesky symptoms (tinnitus, bloodshot eyes, episodes of muscle weakness, a strange full pressure feeling in my head, and an inability to control body temperature.  After suspecting I might be dealing with a Mast Cell issue, I started taking a Zyrtec and Zantac every morning and really feel it has been helpful.  I no longer feel dizzy and my tingling and shaking has basically disappeared.  I'm also wondering if I might be dealing with Ehlers Danlos but we will see what Mayo has to say!  What a journey this Topsy Turvy Life is!  I can tell you that through these very difficult times, I've learned to appreciate.  I say a little Thank You to God with every bite that I eat.  So now I wait... Mayo Clinic approved my appointment, but there are no openings.  I will keep bugging them until they let me in!  Ha Ha!  Until next time...

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.  Psalm 73:26  

Amy