Dizzy shaded glasses?

Lots of people see the world through "rose colored glasses."  Those of of us with Dysautonomia see it more through "dizzy shaded glasses?"  I guess this is the best way that I can describe it.  Here's another little window into my world.  Mornings are usually the hardest on us.  When I wake up in the morning, I never feel well rested.  Those days of being like a child and feeling refreshed and ready to attack my day are long gone.  I feel like I start at the bottom of a hole and have to figure out how I'm gonna get out today.  Some days, I feel like God is my cheerleader sitting there cheering me on telling me you can do it!  Others...I feel like why bother?  The end result is always the same?  Why keep trying?  Because I have faith in my God that's why!  He's gonna find a way to make this better.  Maybe not even better in this lifetime but when I'm finally called home to be with him. 

As I was saying though, I wake up and once I finally muster the energy to sit up (this may take several trys) my feet hit the ground.  I dread this moment every morning.  The pain that shoots from my feet up into my legs, the second I put any pressure on them, is unbearable.  Through all of this I've been holding my bladder so long that I need to make an A line for the bathroom.  The only problem is...I am now in pain since the nerves in my feet are going crazy and now all the blood from my head has proceeded to rush to my feet (doesn't this sound like fun?) so now I'm so dizzy I can barely see the bathroom that is only about five feet away.  I stumble holding onto the bed and anything else as my vision goes in and out.  I try to defeat my never ending enemy...gravity.  If I make it to the bathroom without falling I have won the game!  Whoo Hoo Play again tomorrow.  It never ends!  Kind of like that movie with Bill Murray, Ground Hog Day. 

That's okay though.  I'm gonna keep on keepin on as my good friend Lyla tells me. 

I've had a lot of obstacles thrown my way over the last couple of weeks whether it be family or sickness or big plans that God has for me.  I'm excited, but its been hard too.  However, to be very cliche, when ever God closes one door he opens an other.  God has began to place some amazing women in my life and I couldn't be more excited about it!  I was even was talking to some random person on the phone today (can't tell you who because it will give you a hint as to upcoming posts) but turns out the guy knew what POTS was!  I thought I was going to do a back flip!  He was premed but that is besides the point...he knew...and that was enough for me.  One more thing and then I will close for today.  I also got an e-mail from someone from Australia who has POTS!  POTS has gone worldwide people!  We're gonna get the word out there and we're gonna stand up for those of us that sometimes can't!  Love you all!

My God is soooooo good!

I serve an amazing God.  You know, even during all of this craziness, that is my life. God blesses me everyday.  For those of you that are close to me, you know that I have been hoping and praying for acceptance to the Mayo Clinic in Rochester, MN.  This is where some of the best POTS doctors in the nation are.  I've been on a waiting list and have been told I was accepted but that it could take several months to a year to be seen.  I have had every doctor call, fax and do whatever it is that I can to expedite the process.  I call about every other day and get the same answer..."I'm very sorry Mrs. Holt but we just can not give you an accurate time on your wait.  The list is very long."  After my hospital stay last week, and so many of your prayers yesterday when I made my call (like I always do) the lady on the other end put me on hold as usual, but this time came back and said...."Mrs. Holt we have you down for an appointment on October 20th!"  I swear my heart stopped.  I asked her to double check and she said yes it was right that I would be getting a packet in the mail.  How amazing is God??????  I hung up the phone and started crying out of pure joy.  God had heard me.  He had answered my prayer.  Not in my timing but in his perfect way.  I can't believe I will be there in less than a month.  I am so thankful!

Reliving the nightmare

Do you ever have a bad dream and then wake up but you're too scared to go back to sleep because you're afraid you might have that dream again?  I feel like this is my life sometimes.  I try to stay positive and hold tight to my faith but I'm telling you I came home from the hospital in worse condition than when I went in.  I'm weaker now than I have ever been.  I am constantly falling and feeling completely and utterly confused!  Sometimes, I feel like I have Alzheimer's at the age of 27.  Something is just not right.  The doctor's don't have a clue...of course.  I'm maintaining my hope though.

Tonight, Justin was shaving his head (which I was in strong opposition to but that is a whole other story) and Collin and I we sitting in the bedroom watching him cut his hair and laughing at him while he was doing it.  I was weak but Collin was sitting still so it was ok.  Justin asked me if he could run through the shower so he could wash the hair off.  I thought I could handle it.  I really did.  We have a baby gate at the entrance to our room so he couldn't escape but there were lots of little distractions for the little guy.  Justin wasn't in the shower five minutes and when he got out he yelled "are you ok?"  I was sobbing.  Collin was running back and forth and was hiding along side of the bed where I was unable to bend down to see him.  My heart was tachycardic my feet were blue from trying to stay upright for too long.  I just broke down.  "I can't take care of my son" I told Justin.  This is a nightmare I relive everyday.  All I ever wanted was to be a mom.  The fact that I can't take care of my son makes me angry and sad all at the same time. 

Why me God?  Why did I have to be the one you chose to allow to have POTS?  Was it a lesson? Is it to help someone else? Is it to help myself?  I don't know?  I may never know.  I was reading in my Bible last night and as I was lying here crying in pain as I do a lot of nights I read Proverbs 19:21 Many are the plans in a human heart, but it is the Lord's purpose that prevails.  Got it God I thought.  I will not commence my pity party.  I do have so much to be thankful for.  I just need to be reminded of that sometimes.

I'm just saying...

So, after a week long stay in the hospital I have realized a few things.  There is some validity to the call don't fall signs...I'm just saying.  As for us postys girls, if you want me to call, don't take it out of my room.  I now have the egg on my forehead to prove I should have called before I fell into the metal door frame of the bathroom in the middle of the night...I'm just saying.  Did they really think in my (attention this is my graphic disclaimer) dizzy, vomiting, brain fog, low blood pressure, migraine, dehydrated and malnourished state that I was going to remember to do it on my own? 

I'm not joking when I say two days ago I was in the worst pain I have EVER been in, in my entire life.  The migraine went on for 6 days and I literally thought I was going to go insane.  Having a baby was less painful than the the things my body was doing.  I would never wish it on any one.  I didn't get to see my baby for three days because two of the days I was incoherent and the third they kept telling me I was going home and then I wasn't it was a mess.  By the time Friday rolled around, I was depressed because I missed my family so much.

Then this is my favorite, so, the doctor who has been treating me for my POTS the same doctor that keeps telling me its not that bad.  If its not that bad them why is he firing me?  He says he doesn't know what else to do with me...but he doesn't know who would either.  Really?  Do they give refunds on the degrees given from the school he's attended?  I'm just saying.  I have a bit of anger and I realize this but who wouldn't.  I'm trying so hard not to give up on myself when everyone else is giving up on me.  I'm not going down without a fight!  Phil. 4:13 I can do all things through Christ who strengthens me.  Even if I'm I'm the only one left standing (relatively speaking.) 

I did get my POTS doctor, the one that does not know what to do with me, to get on the phone and with Mayo and get me on the Semi Urgent List...Praise God!!!  We are now awaiting a phone call to tell us when the appointment will be so please, please, please join me and my family in prayer.  We really believe that this could be the answer to a better life for me. 

My POTS doctor swears that all the symptoms are not connected  but everyone else on the face of the planet says that they are.  I agree that maybe the brain cyst is unrelated but the vomiting and all of that is typical POTS symptoms and he is telling me he can not treat me for those things??????  I'm so confused!!!  As I paused between puking spells to try and explain to him how I was feeling and sobbing all the way that was the first time I have ever seen my doctor really show any sign of emotion.  Maybe he finally got it.  I don't know. 

Nevertheless, I am home now.  I am completely drained, exhausted and thankful to be out of there all at the same time...I'm just saying.

Dysautonomia Awareness Week (Not quite the way I intended)

It would only be fitting

It would only be fitting that during National Dysautonomia Awareness Week (when I had all of these grand plans for raising awareness)that I would land myself right back in the hospital. I've been in here since Monday. Low blood pressure, tremors, dehydration, migranes you name it I've got it going on right now. Maybe that was God's plan though. I've taught several nurses about POTS and most of them are wearing blue ribbons. I appreciate all the prayers!!! I feel a bit better today. If I could see out of my left eye life would be nicer though. My migrane (day 4 I believe with this migrane). Who can keep count at this point though. My vision is so blurred by it. I miss my son so much! I think that's the hardest part. My doc has officially told me to see someone else which are alwYs encouraging words but at least he's calling Mayo today whoo hoo. Keep raising awarness everybody! I'm doing my best here but I need some help.

Oh so childlike

It's funny.  We tend to spend our entire youth talking about what we are going to do when we grow up.  How we are going to claim our independence!  Once we've finally obtain that "adulthood" status most of wonder what all the fuss was for.  Sure, no one tells me when to go to bed or how late I can stay out and so on anymore but what are these things people keep sending me called bills???  We now have to fend for ourselves and there is no one there to "clean up our mess" when we make a mistake.  No one that is except...God.

I have really been struggling with the loss of the independence I worked so very hard to obtain.  For a person who was very independent, I went to very dependent very fast.  Almost like a child again.  I am unable to make decisions for myself anymore because my illness and those that care for me make them all for me.  Often times I am told not to do things (out of love and protection) because it is not safe for me or I need to conserve my energy (or my spoons rather.)  If you have not read the "Spoon Theory" I highly encourage you to.  There is a link to it on my blog.  I feel as though I have regressed in life back to a state of childlikeness.  In many ways physically I have and that is a though pill to swallow.  However, the mental is extremely disheartening. 

I was in my senior year of college the semester prior to my student teaching when I had to quit school.  I was on track to my dream of becoming an ESL Elementary teacher.  Throughout my observation hours in classrooms I administered many reading assesments.  Last night, I was taken back to these.  It was a very eye-opening experience.  Justin and I were laying in bed discussing some scripture.  I was reading something to him aloud when he jokingly interrupted me.  I joked back saying "you're going to interrupt the word of God."  Then as we both have a habit of doing, I began to take the joke further reading Psalms VERY LOUD so he could hear me through the bathroom door.  Ha!  He came out laughing and I kept going until I got to the end of the page.  I stopped and looked at Justing and said "was I the only one who heard something wrong with that?"  "What do you mean?" he said.  "The way I was reading, what is wrong with me?"  He responded with "I thought you were reading that way on purpose."  Tears filled my eyes as I replied "No."  I sounded like an elementary student.  I was unable to read with any sort of fluidity, speed or attention to puncuation.  I had at times to stop and reread things and self-correct myself.  It would take me a minute to read a word not because I didn't know it but because I couldn't remember how to say it.  It was so sad.

While I was reading though Psalms, 143:1 really tugged at my heart.  "Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief."  This IS the CRY of my heart!  Relief from the silence.  I have been crying and pouring out my heart to God and feel as though he still remains silent with me.  I've really been trying to examine my relationship with him and why it is that this intimate relationship he speaks of wanting all throughout the Bible is not there for me right now.  Why?  A sweet friend of mine sent me a book called Disappointment with God.  I've been reading it and it is truly amazing.  As I was reading through it tonight, the author was discussing God's relationship with his chosen people and how he desired that relationship.  He said "He wanted what any parent wants: a happy household of children who return their parent's love."  This got me to thinking...that's what I want!  I want God to return my love!  (But of course I want him to return it in the way I want it.)  God does love me.  I know this.  He is providing for me in countless ways...I just want to feel him.  I want to feel his peace...RELIEF from all of this brokeness.  I want to feel as though I am me and that he recognizes me for that and not just someone to take care of. 

Earlier tonight, my father came to visit and I was in and out of conciousness.  I was having bad spells one right after the other.  I listened as my husband and my father talked about who was going to watch Collin and I while my parents were out of town and my husband was at work this week.  I wanted to scream...I'm right here!  I know that they meant well but, as I have now expressed to my husband, I want a say in who "babysits" me.  Maybe I can't do much, but I am still and adult with real feelings and opinions.  I think sometimes everyone gets so caught up in taking care of me that they forget to ask how I am...not how sick I am...but how I am.  It's been awhile since someone has.  It's always do you need water?  Do you need your meds?  Do you need me to adjust the thermostat?  I wish I had the freedom to be me.  To have a lunch date with a friend, or a date with my husband.  I've decided that my insomnia is self induced.  I think that I truly stay awake to have just a little taste of freedom.  For those few hours there is no one making a fuss over me, I can sit in silence and read, or just watch something on tv that I want to.  Although, I am here and attempting to engage during the day I feel obligations.  I feel the obligation to interact with my son as much as possible so that he knows Mommy is ok.  Then when he goes to sleep, I feel obligated to entertain my mom who is here to help me and has nothing to do when Collin is sleeping.  Then when Justin gets home, I feel obligated to spend time with him because I missed him and I haven't seen him.  I don't mean obligated in a negative context it is just simply that an obligation.  I never get a break.  If I sleep my sweet baby screams for me and my husband says he misses me so I feel guilty.  I feel like I need a break from the "getting through the day."  I really struggle with who I am anymore.  I feel like a child trying to get to adulthood...again.

Got Pots???

My bags are packed I'm on the guilt trip

Lately, I've been grieving.  POTS has changed my life (I feel as though I have lost my identity, my freedom, my life at times), my family's life (my husband has pushed back his calling to go to seminary, lost his free time, has taken on two full time jobs, my baby has lost the active and fun mom he once had)and even my friend's lives (some of them have stood by me as if they were family and some have disappeared).  Grief is a tricky thing to deal with.  

Over the last couple of days, I have shut down.  I've been extremely sick and I am ashamed to say at times have lashed out at my family in anger.  Honestly, I'm not mad at them.  They did nothing wrong.  It's me.  I'm frustrated (to put it lightly.)  I've had a lot of guilt that I've been carrying around.  I know, I know...that is not from God.  My husband reminds me of this until he is blue in the face.  He keeps telling me that yes it is normal but it's what you do with those feelings that matter.  Do you dwell upon them?  Or do you dismiss them?  Is it really that black and white?  For example, the other night I was watching the news and there was a story about a boy that had been bitten by a rattlesnake.  They showed his wounds and I have to admit they looked pretty bad.  The news reporter talked about how the boy spent five days in the hospital...but was expected to return to school on Monday.  Oh!  I felt my blood boil with rage...(I know that this is not a normal response to a story of this nature.  As a Christian woman, I should be praising God for his recovery.)  Instead I was angry!  I heard the boy say how he was so thankful to make it though and how he learned so much from his time in the hospital.  I'm sorry, all I was thinking was five days in the hospital and he's healed???  Where do I sign up for that gig?  Let's go!  Then the guilt set in.  How dare I feel sorry for myself when there are people with terminal cancer who would trade places with me in an instant.  I feel guilty. 

Next to my bed I have a post it note with Matthew 16:23 written on it.  It is the first thing I see in the morning when I wake up.  "Get behind me Satan, you are a stubbling block to me.  You do not have in mind the concerns of God, but merely human concerns."  I recite this over and over in my head all throughout the day.  I have prayed until I have just run out of words.  I go to God and simply beg for help these days.  "I don't know what to ask for anymore I tell him."  I feel like he isn't there (of course I know he is) but I can't feel him, I can't hear him...I just uuuuugggggghhhhh. 

Today at church I cried to the point I had to physically leave the sactuary.  I left my precious little boy as I was wheeled away he was screaming and crying for me.  He doesn't understand.  He acts out and yells for me when he knows I am sick.  He can tell a difference between my good days and my bad days.  How does such a small child understand so much?  The heart that I prayed for everynight while he was in my belly is truly inside that little guys chest.  I feel guilty for his pain.  I feel guilty that he begs to go outside and can't because I can't be left alone.  I feel guilty for everything my husband does and everything my illness is holding him back from.  I have the most amazing husband in the world.  He'd give up everything for me without a second thought...so why do I feel so guilty?  I didn't bring this illness on myself.  I've never been one to ask for help.  I've always prided myself in being an independent person.  Now I am dependent in every sense of the word.

I love my Father in Heaven with all of my heart.  His plan just doesn't make sense to me.  Not that I think I am worthy of knowing his plan...but it is so hard to see him preform such miracles in people's lives and not know why he has not done the same for me.  I wonder if I'm doing something wrong, if there is a lesson to be learned that I have just not grasped yet.  If so, I really wish he would knock me on the head with it!  I go back and forth with peace.  There are periods of time where I feel as though I have come to terms with my illness and that I am ready to make changes, to make my life the best it can be... given the situation.  For example, leaving our house, moving to an apartment that I can walk around a little bit better, filing for disability.  I've tried to embrace it.  Then there are the times where I get so tired of people telling me "you're going to get better...I just know it!  God is going to heal you."  Well, what if he doesn't why is that not ok with anyone?  Personally, I want to move on.  I want to know that I am going to be sick or I want to be healed.  I'm tired of riding this emotional rollar coaster...where is the exit? 

Is anyone aware?

I would be willing to bet that if you asked 50 random people on the street what Dysautonomia is, or what POTS is for that matter, they wouldn't have a clue what you were talking about.  What upsets me even more is that I could come up with a list of pretty close to 50 people that I have encountered just the DFW area that are affected with this invisible illness.  So why is it that no one knows we are here?  I'm not talking just talking about random people...I'm talking about doctors too!  Throughout the course of my illness I have made several visits to the ER.  Every time (with the exception on one) the doctor has had no idea what was wrong with me.  It has become my job, someone who has never spent a day in medical school, to educate my doctors.  I actually had one doctor that when I asked if he knew what POTS was responded with "No, but I can google just like anyone else."  Really???  That's what you get paid the big bucks for?  So, because no one knows I suffer and so do so many others.  I have one doctor that treats me for my POTS here in Dallas.  To my knowledge, there are two others that treat the illness in the area as well.  One only treats from the pediatric side and I don't think I have found the other.  I have met people in my doctor's office that travel from across the state to see my doctor simply because there is no one else!  My primary care has no experience with the illness and neither do any of my other doctors for that matter.  I had to beg a paramedic not to give me nitrates (because he thought I was having a heart attack...which I knew I was not) on my last ambulance ride.  After he pulled out his nifty portable laptop and googled he said "wow, you're right that would have been really bad for you."  What if I wasn't able to get the words out?  I don't even want to think about what could've happened to me.  Well...now my only doctor has pretty much wiped his hands of me.  We have reached a "dead end" he told me.  You really need to go to Mayo, I am not giving up on you but we are really at a stand still until you see them, he tells me.  What he fails to mention is that the Mayo clinic has a several month waiting list.  So what am I supposed to do in the meantime you ask?  Apparently nothing.  He doesn't know what to do.  So, when I went into extreme chest pain Thursday morning, which was the same pain that put me in the hospital last week, I was curled up dry heaving into the "puke bucket" that is now a permant fixture beside my bed my POTS doctor told my husband to call my primary care doctor to treat my chest pain.  My primary care doctor that doesn't know very much about POTS and like most doctors are scared to touch me because of all of the meds the POTS doctor has me on.  But that was his solution...really???  It was obviously POTS related but he has given up on me I guess.  By the way, we're still waiting on the call from the doctor my husband requested.  What would happen if I had that attitude?  If I just gave up when things got hard?  I'm here to tell you God hasn't given up on me and I'm not giving up on myself!  Somehow, someway I'm going to make a difference.  I may only be one person...but I am one determined person.

Window to my world

I awoke this morning in confusion to a trembling right arm.  Within a few seconds, my iphone alarm was going off to inform me that it was time to take my meds.  Due to the complete state of confusion I was in, this startled me sending me into tremors.  What a way to wake up!  There I was lying there...scared.  I picked up my phone (which my sweet husband had laid beside me when he had slipped out to take care of the baby this morning...just like he always does.)  Although I give him a hard time about keeping me in a "bubble" sometimes, he is always looking out for me.  My body was shaking all over the place and I grabbed for my phone.  The only downfall to the plan was that Justin had forgot to turn the ringer back on from last night.  I laid there with the phone ringing and my body shaking.  I mustarded up every last bit of enery I had to yell "Justin."  He came running in and instantly said "oh no I forgot to turn my ringer on didn't I?"  "I'm sorry baby," he said.  He came over and sat by my side and began asking what he could do to help.  We got the convulsions, tremors, seizures or whatever the doctor decides to call them today to stop through our well versed emergency routine.  Which in the end, resulted in me passing out.  When I came back around to be greeted by my husband's sweet face we took my blood pressure.  88/50...looks like its gonna be a rough day I thought.  I looked at the clock and it was only 8:20. 

Gotta start somewhere...

...I guess the beginning would be best.  If you've read my "about me" section then you already know a little bit about me.  You're probably wondering why I titled my blog My Invisible Thorn.  Some of you may have already made the biblical reference.  Wait...let me back up...let me preface this whole blog by saying I apologize in advance if at times nothing I say makes sense, there are spelling errors galore or grammatical errors that an elementary student would make.  Brain fog is a side affect of my POTS.  Yes, I am aware that there is a spell check on my computer, but that is assuming I remember to use it!  Good...now that's out of the way.  Paul talks in 2 Corinthians about his thorn.  There are many speculations about exactly what his thorn was.  However, most believe that this was a reference to a physical ailment he was plaqued with.  POTS is my thorn, and it is invisible in so many ways.  Unless you notice the severe bags under my eyes from my chronic insomnia or the wheelchair that I loath!  You would probably mistake me for a normal person. 

This all began when I became pregnant.  (One of the biggest blessings in my life)  In the early stages of my pregnancy I experienced some dizzy spells and massive fatigue.  Normal pregnancy stuff I thought.  At the time, I was very active, I was teaching dance.  Very quickly I began cutting back on my hours and soon after had to quit altogether.  During my second trimester I began passing out, having chest pain, shortness of breath and rapid heartrates.  My blood pressure began dropping extremely low.  No one could figure it out.  I saw specialist after specialist and ultimately ended up on bed rest.  It was not until much later in my pregnancy that I was diagnosed with POTS.  It only got worse from there. 

At 34 weeks gestation, I saw my cardiologist who took one look at my cold blue (literally) body and knew there was no way I could carry my baby any longer.  I'll never forget that day April 21st 2009 it was a Tuesday.  I left the doctors and soon recieved a phone call from my OB telling me to get to the hospital because we were going to have a baby on Thursday.  They started me on steroid treatments to build up my sweet Collin's lungs.  The doctor prepared me for the worst.  She told me he would be about three pounds and that he would have to spend a good amount of time in the NICU.  I was terrified!  Justin and I (that's my husband) prayed that God would protect us both.  I delivered my baby via c-section and by the grace of God he was 5 pounds 10oz.  I actually got to take him out of the operating room with me!  My OB was floored at how big he was.  He was such a little fighter.  That night he went into a bit of respiratory distress and was admitted to the NICU.  He had no intentions of staying there though.  He pulled his c-pack machine out the second day and was fine without it!  Next he pulled out his IV.  Each time he "self diagnosed" himself he was right.  He was discharged from the NICU before I was discharged from the hospital!  God is so amazing.

In the months after the birth I got better...well kind of.  I was able to manage at least.  I had good days and bad days but I was getting by.  I had dizzy spells and days where there was no way I was getting out of bed...but I wasn't passing out.  I dealt with my condition the best I could for about 14 months.  Then this past June, it all fell apart.  I began passing out again and was worse than I had ever been.  I've been in and out of the hospital and am now on a ridiculous number of medicines to "help" (I use this term very loosely) regulate my autonomic nervous system.  Even with all this I find it hard just to make it through the day sometimes.  God has humbled me to a place I never knew I could be.  I am now in a wheelchair, unable to take care of my son or myself on my own.  God and my husband are the reasons I can make it through the day. 

Never in a million years did I imagine myself in this place at only 27 years of age.  Every day is a struggle for me and my family.  Most days I hold tight to the promise that God has given me...that he will never leave me nor forsake me.  But...just a moment of transparency here...there are those days when I am angry and don't understand why this is happening to me.  But that is not for me know.  (Easy said than done)  I know that I am in God's hands and there is nowhere I would rather be!