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     

Medical History Bracelet

 I posted a few days ago about my new Medical Alert bracelet and how much I love it!  Well, here is my post I promised!!  It's called the CARE medical history bracelet and its a USB and bracelet all in one!  The bracelet is pictured to the right (I purchased the black bracelet).  By the way, the picture to the right is from their website (where you can purchase a bracelet) www.medicalhistorybracelet.com.  The bracelet is fool-proof.  Plug it into your computer, open the file, and the program appears on your computer.  I took some pictures of the program so you could see how easy it is to use (filled in with some personal info from a guy I like to call John Doe)!

 The picture to the left shows how to fill in your information.  You click on a topic from the list at the left and fill in the boxes.  Easy as that!  You can also scan important medical files and documents onto the USB.  I scanned a sample of my EKG during an "episode" and a document about the dangers of anesthesia to a patient with Mast Cell Activation Syndrome.  The great part about this bracelet is that you can give an in-depth description of your condition.

 My past bracelets, were ineffective because people would see "POTS patient" and still not know what my condition entails.  It's a rare condition so it's amazing to now have the ability to store a ton of my medical information on one small bracelet (and easily change it, if needed).  The picture to the right shows what a medical professional will see once they plug your USB into their computer.  My bracelet actually has my picture on it so it appears under the "Medical History" heading.


The picture to the left is a continued view of this page.  Medical professionals also have the option to print this page.                          

OK, enough of me raving about this product!  I am obviously in LOVE!!  I also love that it is made out of a flexible, safe material that contains no latex!  I've always had issues with past bracelets because I'm extremely sensitive to metals.  Even bracelets claiming to be gold, could give me a rash!  I've been wearing this bracelet for a week and no rash!  Yay!  So, go buy one!  ;-)  And no this company is not paying me, I just love their product this much!  You can either order it from their website or find it in many stores.  Here is a link to their Facebook page: http://www.facebook.com/MedicalHistoryBraceletbyCARE

OK, I've pounded it into your brains enough!  I hope you all love this bracelet as much as I do!

"From the fullness of his grace we have all received one blessing after another." John 1:16

Have a great day!
Amy

Sunshine and Blood-work...

Look out Arizona, I'll be there soon!  The blood-work, pokes, and prods are just a small price I have to pay for a little sunshine and vacation time!  I finally received my Mayo packet in the mail.  Nothing super new or unexpected.  I meet with Dr. Goodman bright and early on Monday morning for a consultation.  In past appointments with him, he added more tests after this consultation.  For anyone planning a trip to Mayo (especially if you are traveling a great distance), plan on being there for a week.  It's not unusual for doctors to add more tests into your schedule.  The only other thing he has planned right now is the full autonomic screening.  Ugh!  I was hoping I wouldn't have to repeat this, but I guess I'll suffer through.  The packet wasn't specific about which tests are included in this screening but I'm assuming it will be similar to the screenings I've had in the past.  The Tilt Table Test (hate this one, it makes me feel awful), the Sweat Test (tolerated this ok, just weird skin tingling sensation), the Stress Test (also not fun), and the test measuring adrenaline (not sure of its name but it involves lying in a dark room for about half an hour, having blood drawn, and then another blood draw after standing).  I'm probably forgetting some tests.  The last time I had them done was in 2008.  I'm sure these tests will completely wipe me out and this really won't be a vacation at all, but I'm just looking forward to soaking in some sunshine and enjoying some quality alone-time with my hubby!

Here on the farm, it's feeling like spring!  My favorite time of year!  The snow is melting (it will freeze again next week), the new calves are being born, and the birds are chirping a little louder!  I've started spring cleaning my house, which is quite the project for a POTSie!  There's a lot of resting involved, but it's always satisfying looking at a room and knowing I've scrubbed every little corner!  So long winter dust-bunnies and cobwebs!  This time of year always gives me a new energy for life!  Seeing all the calves running and playing in the pasture, soon my tulips will start peaking through the once-frozen ground, it's as if the entire farm is being re-born!  Have I mentioned how much I love it?  Ha Ha!  So this Mayo appointment is coming at the perfect time for me!  I'm energized and ready to battle for some answers!  Now the trick is to keep this energy!  I'm sure it will be waning by this afternoon!  ;-)

"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31

I know that's kind of a long verse, but I think it was written just for us POTSies!  How fitting!  :-)

Amy

P.S.
  I added a new Links page with links to some of my favorite pages, support groups, and blogs.  It's a work in progress, but hopefully it will be helpful!
 

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!  :-)

Skinny Jeans and a New Outlook on Life...

Yes, this is how my POTSie brain operates. Only a true POTSie can correlate skinny jeans with a new outlook on life. Actually, it's probably just me. Let me explain.

I got my first pair of skinny jeans the other day. This lovely "crash" I'm experiencing has resulted in a 25 pound weight loss. I might as well enjoy it! No more sweatpants and baggy t-shirts for this girl. I got some skinny jeans, a new haircut, and POTS will not control my life!

I'm a bit of a self proclaimed control freak. I think anyone who deals with a chronic illness can relate. We can't control so many things in our lives due to our poor health. So, why not have complete control over everything else? Haha! Too bad it doesn't really work that way! But, I still try! I'm a stickler about having a schedule, I've become more and more diligent about eating healthy, and I strive to look nice. I don't consider myself a vain person, but I already have to feel like crap everyday! I'd rather not look like crap, too! My hair is falling out by the handful, my skin is so pale it's almost transparent, and I have dark circles around my eyes, but I always try to look nice. I guess it's just my little way of controlling what I can, not letting this illness win! I'm stubborn to the core and this is my life! POTS will not take control of me!

Amy

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

New Medical Bracelet...

Just a quick post today.  I was shopping online for a new medical bracelet.  I wanted something that could easily store a lot of info and easily be changed.  I've already been diagnosed with POTS and am probably dealing with some other lovely diseases.  Also, my medications are constantly changing so something engraved is out of the question.  I also have the problem of medical professionals not knowing what POTS is, so seeing the name on a bracelet is pretty useless.

Well, thanks to the power of Google, I found this lovely bracelet with a USB!  Genius!  I included the link below.  I ordered the black bracelet and it's back ordered for 4 to 6 weeks, but I'll let you know when I get it!  I'm anxious to see how user friendly it is!

http://medicalhistorybracelet.com/how-it-works/

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

It's Time We Break Up...

Dear POTS,

It's time we break up.  It's not me, it's you!  One day of shopping on Wednesday, and you decide to get jealous and take over my life.  I realize you love me, but I'm really not having fun in our relationship anymore.  Yesterday, you made my arms so weak, I couldn't even wipe down the table.  I'm only 26 but my body operates like a person who is 86!  POTS, you really just need to go.  Our relationship is toxic.

You are making me choose between you and my kids.  I choose my kids.  This morning my toddler wanted an apple cut up.  It took me a half hour because my hands are so weak and achy!  That's not OK! 

I didn't even ask to be in a relationship with you!  You just wiggled your way into my life, a little at a time and now you've taken over!  Did I mention you're not that fun to be around?  Sure you make my heart race and I get butterflies in my stomach, but it's not in a good way!  You're kind of a jerk!

I think it would be best if we just cut all ties!  No need to stay friends.  I really don't think we're good for each other.  It would probably be best if you stayed single.  Don't bother anyone else.  You're a nuisance!

Signed with all the hate in the world,
Amy

"I can do all things through him who strengthens me."  Philippians 4:13