Updates...

Whoo!  We're back...still not fully recovered...but we're back safe and sound.  The Mayo Clinic was a challenging experience.  There were moments I thought things would never end, moments I wanted to give up and (just being honest) moments I wanted to give some doctors a piece of my mind. 

The testing was exhausting!  However, I now know that EVERY part of my body has been completely checked out.  The week got off to a rocky start but in the end the trip wrapped up pretty well.  My doctor finally even smiled on the last day!!!  (Trust me this was a huge deal)

After everything, my final diagnosis was chronic fatigue, some lower intestinal issues (made worse by my condition) and Dysautonomia.  My doctor would not label me with "POTS" because, as us Potsies know, we have good days and bad days and some of my symptoms did not present themselves during my autonomic testing.  My doctor said based on all of my other medical records...POTS...but from her testing (which is all she would look at) Dysautonomia.  She said the label wasn't important but then when I said well if you don't call it POTS then I have several symptoms that are unexplained she said "well then call it POTS." 

The bottom line is we have a tentative plan for now on how to deal with it.  She said that it could take me 6 to 12 months to recover from this episode but she thinks that we can work through it and be better prepared for not if but when I have these episodes again.  She things that I am in a cycle and that I most likely will get better again (like after my pregnancy) not completely asymptomatic but to a point where I can function better but that it will happen again.  After all, its a chronic illness.  We think it was the heat that triggered it this time and so that may mean that we start looking at relocating if I get better in the winter and become sick again this coming Spring.  Anyway you look at it, it is going to require even more lifestyle changes. 

The doctor thinks that a lot of the medicines I was on were causing my system more harm than good.  We found one instance where two of my meds were crossing and no one had noticed.  The put me on three new meds and pretty much took me off everything else.  She wants me to use my IV fluids as a crutch to get back on my feet so that I can start a physical rehabilitation regiment.  We are going to give it a couple of weeks of getting my GI tract "reset" in an effort to get me out of pain, but starting some meds.  Then increasing my fluids to give me strength and to alleviate some of the symptoms so that I can hopefully keep fluids and food down on my own.  If that doesn't get me up, we're looking at putting a port in since with a picc line I can't pick up Collin (nothing over 15 pounds) for prolonged fluids since my body seems to be rejecting medicine and fluids have proven to be the most beneficial thing to my particular condition.  Its baby steps...but hopefully I can get some quality of life back.  I want out of my WHEELCHAIR!!!  It was hard to hear the doctors talk about how deconditioned I was.  They acted like I wanted to be.  I would get so angry!  What 27 year old wants to be in a wheelchair???  I would much rather be chasing my son and dancing for that matter! 

The bottom line is we got some answers to questions that other doctors had been avoiding or ignoring all together.  I am very thankful for the opportunity to have gone...and hope I never have to do it again!  She gave me the name of a doctor she knows here in Dallas and we are going to look into him per her recommendation.  He used to work at the Mayo.  I am so thankful to everyone who has supported, prayed and just loved on me in this difficult season.  I thank God for everyone of you!

Mayo week...or two?

The phrase TGIF has a whole new meaning to me now.  I have never been more excited for a Friday in my life.  I can't wait for a weekend of REST.  This has been a challenging week physically, mentally, and spiritually.  I have been put through more than I ever thought I could stand.  I know that God is never going to give me more than I can handle but...I feel like my cup's getting pretty full.

Since Wednesday, I've met my main doctor who in spite of her brilliance has no bedside manor to speak of but that's ok.  (As my cousin said, "we want her for her brain not for her tact.") It was hard hearing things so bluntly off the bat and being vulnerable.  From the moment I got here, she expressed her extreme frustration with my doctors in Dallas.  She thinks they have done more harm than good.  I believe her exact words were something along the lines of "they've made a big mess and now I have to clean it up before I can even figure out what's going on."  She off the bat threw out my diagnosis which sent me into tears...here I was thinking that I've had a label just no solution...no she said...I don't trust anything they say.  So all of the sudden I was back at square one again.  Sick with no label, no solution and no light at the end of the tunnel.  It was a bit discouraging.

I started tests that afternoon and since then it has been non stop.  I've been poked and prodded until I thought I just couldn't take it anymore.  I've tried to be strong for so long and now it just seems like I'm starting over.  Which I guess I am.  I am in good hands here though.  These people are amazingly organized and when I show up for a test they already know everything about me.  It is awesome.  Not to mention God is working through all of these people here.  The nursing staff remember your name and say hi and smile and try and comfort you they are so kind.  They've made the process more bearable. 

I've had what feels like all of my blood stolen :) Needles, needles and more needles!  I've been turned purple through a sweat test that I wouldn't wish on anyone.  They cover you in gold powder slip you in a tent under heating lamps (any of you that know me, know how well I do in the heat) then increase your body temperature until you're running a fever 100.4 degrees and see how you sweat.  If you sweat your powder turns purple and you are instantly turned into Barney.  I was in and out of consciousness the whole time and by the time they pulled me out after an HOUR!!!  I was unresponsive...so next thing I know I'm shaking and some little Asian doctor is poking at my eyes and lifting and dropping my arms.  I now know it was the head of Neurology and that I sure know how to fill a room with people quick.  I seem to be making a habit of it here.  Four showers later...I'm still pale purple.

I've had an EEG that was painful and left sores on my head.  Wore my monitors and got no sleep last night because my blood pressure cuff was going off every 20 minutes.  Over the last 24 hours I've watched my heart rate fluctuate from 49 to 141...I don't think that's normal.  These are just some highlights from the week.  For my grand finale though, I might as well go all out right?  I had a cardiovascular stress test today that nearly killed me.  I gave it my all like they asked and they got what they asked for.  My heart rate spiked to 165 which is really high for me then my blood pressure bottomed out to 80/42.  I filled the room that time too.  Needless to say I'm so tired its not even funny. 

Looks like we'll be staying here a few days longer for some more test and consults that the doctor wants me to have so it looks like one week is quickly turning into two.  Please pray for wisdom for my doctors and strength for me.  I have the weekend off from testing...but Monday morning I have some sort of Gastric Empty test that involves me going to the hospital and apparently radioactive eggs are on the menu for breakfast.  How did they know that of all the things in the world eggs are one of the things that repulse me the most!  I don't know how I'm gonna get those down...I don't think hot sauce is allowed. 

Thank you all for you love and support!  For now, I'm going to rest.  God bless!

Humbled by God's grace...broken hearted by my thorn

Is it possible to be so humbled by God's grace and yet so broken hearted by this invisible thorn?  God has continued to bless me ten times over with love, through friends, family, my church and people I don't even know.  Everyday it seems that God finds a new way to bless me that I never thought of.  I find myself each day in tears humbled by God's grace.  I continue to feel broken and he continues to bless me.  I try and stay strong for those around me but inside I'm falling apart and I feel as if no one understands that sometimes...but I know my Savior does.  I talk to him at night when I can't sleep I pour out my heart and attempt to leave it at his feet.  I recite the scriptures I read each day and pray for him to take it away.  Although I am human, he treats me as if I am not.  He loves me as if I am already with him.  That's a hard thing for me.  My God is a God that is full of grace.

When I was pregnant I prayed every night for my son to have a heart that would always seek God.  For God to grab hold to his little life and tug.  Now that he's here I already see that God's great compassion rests in his being.  These last couple of months have been hard on Collin.  He has seen me go in and out of the hospital and is very protective over me.  He wakes up now in the middle of the night screaming my name and most of the time I cry because I can't get to him. 

Church has been a challenge he now has a "buddy" he has a hard time when it is time to leave me.  Today for the first time, he cried when we made it to the parking lot.  The car wasn't even stopped.  We went to check him in and I moved my arm to scratch my leg he quickly grabbed my arm and pulled it back to his waist.  It breaks my heart to see my baby feel so much pain.  He doesn't understand.  On Friday when the home health nurse came to give me my infusion Collin ran after her yelling "no, no, no, no, no" he was banging on the bed and reaching for me grabbing my nurses pant legs he thought she was going to take me away.  How does a 17 month old put that together.  I fell horrible.  I feel like I have put my baby through too much way to fast.  A 17 month old shouldn't be worried about if their mom is going to leave them.  They should be worried about playing or things of that sort.  Please pray for my little one.  I don't want him to grow up to fast. 

Tomorrow I leave for Mayo.  I pray I will get answers.  I hope that someone will be able to help me get upright and live a life that's just a little bit better.  I will keep my blog posted on my health updates but if I am not well enough check the Hope for Dysautonomia Group Page and it will be updated with health updates on me as well.

Keep the faith and keep raising awareness!!!

I'm in a Mayo State of Mind

Yes, I know I'm up again...but you would be too if you had the day I did.  God had come through for me today in ways I never dreamed he would.  All in one day, (4 days before I leave for Mayo) while Justin and I have been praying and stressing about how we are going to pay for this trip knowing that it is what has to be done...I get a phone call telling me that my entire stay at one of the nicest hotels that is connected to the hospital is going to be completely paid for...for ALL EIGHT NIGHTS!  How awesome is God?  Then, I guess he decided he wasn't done blessing me today so he was going to throw in a luggage carrier for our jeep delivered to our door...how did I sign up for this deal?  I tell you God is great and the greatness of his love never ceases to amaze me.  He puts some pretty amazing people in our lives for a reason.  I'm learning what happens if you let them in...or if you don't one of the very generous people that is helping my family I don't even know!  God's people are amazing.  Although I am up, at 3:59 still with a migraine, I am choosing to praise him!  Because he is worthy to be praised!  I think I need to listen to some Billy Joel now...

Brake the cycle

I had to brake this cycle of not writing for a few days and pull myself out of the funk I've been allowing myself to live in.  I have been very sick and it has just consumed me the last week or so.  So much so, that I haven't done much more than gotten out of bed.  I just can't take that.  I'm breaking that cycle.  This is for the birds.  Sick or not I have got to press on.  My POTS symptoms have continued to get worse over the last week and I have done everything within my power to just stay out of the hospital.  I've been getting IV's at home and suffering through some of the most ridiculous pain in the world.  Not to mention my ever famous migraines :)  This particular one has had me on my butt for two days.  Satan tried to talk me out of going to Bible study tonight since I didn't do the lesson...but I knew that was where I needed to be.  I'm so glad I went.  I had to leave early because that room wouldn't stop spinning (don't understand why they couldn't get that under control) and I felt myself crashing.  But I made it almost the whole time!  I was quite proud of myself.  Now I'm up because, my head is still pounding if any of this doesn't make sense its because I'm seeing it all in double (sorry), and I can't take anymore pain medication until 2:30.  Whoo Hoo!  I hate being so dependent on these drugs but right now they keep me out of the hospital and I only have 6 days till MAYO!!!  I can not wait.

I have two prayer requests tonight
1.  Please pray for my friends the Kent Family who just lost their father.  Please pray that their whole family may just be surrounded by the peace of Christ.

2.  For my dear friend Lyla who just had to send her best four legged friend home to be with the Lord.  It is always to hard to lose a best friend.

Love you all.  Continue to support Hope for Blue!

We have lift off!!!

It is officially launched.  Hope for Blue Dysautonomia Foundation has a website!  http://www.hopeforblue.com/  It is still a work in progress but YAY!!!

Big News (Part 2)

Here is the big news part two!  I need your help!  With what you ask...as always...RAISING AWARENESS!!!  Part of getting this new foundation off the ground is raising awareness and raising money.  I have designed T-Shirts raising awareness for POTS and for my blog.  I am posting pictures here on my blog.  The shirts are available in yellow, light pink, and blue.  I am selling these shirts for $12.  All profit from the sale of these shirts goes completely to the start and funding of Hope for Blue Dysautonomia Foundation.  Please contact me via e-mail or facebook if you are interested in purchasing one.  If you are out of state, we will figure out a way to get it to you.  Thank you for your support in advance.  We will not be silent!  We are going to make people aware. This world will know about Dysautonomia!

Big News!

Here it is...the big news.  A few weeks ago God began to speak to me about a Non Profit Foundation he wanted me to form.  He has laid the plans before me, given me the name, and the strength when I told him..."No God, I don't have time, strength or energy for this."  He has continued to push me to the point where he is actually waking me up in the middle of the night to work on this.  Well here it is...I am launching a nationwide foundation for Dysautonomia called Hope for Blue!  The website should be up in a few days.  I have spoken with an attorney and am moving forward with obtaining the paperwork and filing needed to achieve Non Profit status.  Above you will see the logo for the new foundation.  Check us out on Facebook.  If you have any questions feel free to e-mail me at potsawareness@hotmail.com. 

Hmmm....

Hmmm...What do I say when I don't know what to say.  I have continued to be amazed by the greatness of my God and what he has done in my life recently.  He has brought one of my best friends safely through surgery this week, placed new friends (that I think have hidden wings) in my life, blessed me with six year of marriage to the man of my dreams and the blessings just keep coming.  However, in the midst of his greatness, I am still human. I still get scared, I still question and yes...although it gets me nowhere I worry.

This has been a rough week and the reason for no recent post.  I apologize for that.  I am now officially off any and all meds for my POTS.  This is not a good thing.  I am growing weaker by the day.  The doctor has been steadily taking me off one medication after another for one side effect or another.  The one medication that has seemed to make the biggest difference for me DDAVP, which raises my blood pressure and creates blood volume two of my biggest problems, has began causing major bladder problems for me.  I believe I am now on day four or five of being off of it and let me tell I'm going no where fast but the floor!  (I'm not joking, I really keep ending up on the floor)  The doctor thinks that he has exhausted all of his options until further review from Mayo so...18 days and counting.  (I guess I'm unfired now????)

I have some exciting news for those of you with Dysautonomia and those of you that support us.  Look for it coming by the end of next week via my blog.  Also,  I have now created an e-mail address where anybody can feel free to contact me for support, questions or just and ear to listen.  It is potsawareness@hotmail.com.  Keep raising awareness!  Keep standing up for those of us that sometimes can't!