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.