Wednesday, September 30, 2009

After all, when I am weak, God is my strength.

Yesterday I had my first visit with a Dysautonomia Specialist.  Dr. Phillips was very nice and understanding, as well as the rest of the staff there.  I will say this, that it is the first time during this whole ordeal that I felt like a Dr. or nurse truly understood what I was dealing with!  Anyone dealing with dyautonomia should definitely find a specialist! is the link to find more information on the clinic where I am now going.
My appointment was at 8:30 am.  I arrived a few minutes early and didn't wait long.  I spoke with a nurse and she asked me more questions. I had already answered 163 questions on a scantron that I had recieved in the mail.  The questions that she asked me were questions that yes/no answers wouldn't be appropriate.  Her office was nice. She had lots of pictures of children. I'm guessing they were her kids or grandkids.  She was very polite and nice.  I then was asked to put on a gown and wait in a separate waiting area.  Since the gown didn't cover me as well as I would have liked I simply slid my t-shirt on over the gown. I admit that I probably looked silly, but walking with a walker and an open front gown was not my idea of keeping myself relaxed!  My next stop was to have another echocardiogram.  This didn't take long and I was asked to wait again. Then I was taken to the Tilt Table Test. The nurse was a very sweet person. I got up on the table and laid down and she attached some leads and cables to monitor my heart and a blood pressure cuff and then I was strapped to the table.  I lay there and she got a baseline of my heart rate and blood pressure. She explained everything in detail, but not in a way that would be confusing.  Then I began the test. The table slowly tilted upwards bringing me to a standing position of 60 degrees.  You are standing, but not quite standing. I would remain in this position for 10 minutes while she monitored my blood pressure and heart rate, and I was to tell her every symptom I felt as I felt it.  If there was any change I was to tell her also.  During the test my mouth began to get dry and she gave me my water.  I finished all of it and continued standing there.  The last 4 minutes seemed the longest because by this time I was weak feeling and very fatigued.  I'm not sure what my heart rate reached  or what my blood pressure fell to, but I was later told that the Tilt Table did indeed confirm my dysautonomia.  My heart rate climbed rapidly and my blood pressure fell. Not alot but it fell.  I was lowered back to laying down, and it only took about a minute for my body to re-stabilize and all my symptoms dissipated.  She allowed me to take my time getting up and we talked.  We talked about my meeting my husband online, and how long we've been married. We talked about my 2 beautiful girls, and then how all of this summer has been hard due to my body just going all hay-wire.  I talked about how God has been working everything out and that I just have to trust in Him.  She agreed and she hugged my neck.  Not a wimpy hug... but an I care about you hug.  She told me she would be praying for me and that she knew that God was going to take care of this. How often do you get that response from a nurse?  I never have! She was truly a blessing to me!  I then waited in the waiting area for Dr. Phillips.  When time came for the chat with her, I was hopeful yet nervous. I sat down and something about her face seemed to calm my nerves.  She asked what my main reason for seeing them was.  I began explaining this summers events. Then she began to tell me that I did have dysautonomia, and the tests proved it, but that my newest problems (the stroke like symptoms) were not caused by dysautonomia, and my heart fell.  Yet again I was faced with no answers! But what she did surprised me.  She paused and she gave me time to absorb this.  Her face was genuinely concerned and kind, and this seemed to pass on a strength I didn't have to allow her to continue.  As I gathered myself, she handed me a tissue, and continued. She said I would need to see a neurologist.  Because I had already been told no by 3, I began to think "What am I going to do?".  She explained that my symptoms were most definitely something neurological.  I told her how at the ER the Dr. said that it was not because my scans were clean and he told me to see a Phsychiatrist.  She showed no surprise at this, and said that it is common for Dr.'s to say this when they don't have an answer.  She said she needed to examine me, checking my vitals and stuff, and we went to yet another room.  She checked my heart rates and blood pressure again and then went to get Eric.  I got dressed and when she and Eric returned she talked to the two of us together. She had already taken the time to talk to Eric alone.  She told us that this looked like Multiple Sclerosis or possibly another muscle disease.  I asked her about what the ER doctor said, just to make sure that he was wrong when he said it's all in my head.  She told me that the fact that there were things like my pupil not dilating, no pedial pulse, the definite temperature change in one leg compared to the other in the same setting, etc. were signs that something was wrong and that a psychiatrist is not what was needed but a neurologist.  She said that she disagreed with the ER doctor.  We talked about some other underlying issues, changed my meds and added meds, and my visit was over.  I was to follow up with my general doctor, and try and get him to find a neurologist that would see me.  I didn't have much hope that he would, because the 3 he had contacted already had told me no.  By the time I arrived home that evening I had a phone call from Dr. Phillips office asking me to return their call.  Their office was already closed.  They called me back this morning, and said that they had found a neurologist that will see me.  All I had to do is get all my scans from the hospital and bet there tomorrow at 3:30.  And what's even better is the charge is only $70.00!!!
   Yesterday I came home feeling torn.  On one hand I had found a wonderful Dr. and staff that understands and cares.  I was confident that with their help I would be able to get my dysautonomia problems under control and managed.  On the other hand, I was terrified.  There is a possiblity I could have something worse than dysautonomia (her words to Eric).  There is a possiblity that the neurologists still won't see me, and my regular doctor will still think that I may need a shrink more than a doctor.  I have 2 children both of which could inherit my dysautonomia and Lord knows what else it is that I have whether it's hereditary!  I felt broken and scared.  But I knew that God was going to take care of me, after all, He always has!  This mornings phone call proved His faithfullness to me once again.  So tomorrow I'm off to see my neurologist.  I'm praying for good answers, and if there are bad answers, I'm praying for strength. After all, when I am weak, God is my strength.

Side note: I also need a sleep apnea test and hormonal workup later on.... not sure when yet.  I'm not on meds for my insomnia, and last night I rested wonderfully!

Tuesday, September 29, 2009

... traveling thoughts are bound to happen!

It's 12:22 am. I'm laying in bed wondering what my day is going to be like.  See, I have an appointment at 8:30.  I am supposed to be waking up in 5 1/2 hours and getting dressed for my very first visit with a Dysautonomia Specialist.  I've typed up a quick history timeline to refer to if I'm asked a question and the brain fog is bad.  I've also typed up some questions I have.  I have answered all 163 questions they asked me and bubbled in each answer with a #2 pencil on a scan-tron test sheet.  It has been a very long time since I have had to use a test sheet like that!  I'm trying to mentally prepare for this.  I was told that my first visit would last from 3-4 hours.  The only test I've been told about is a treadmill stress test.  I'm not sure how this is going to work out, as I've been using a walker for 4 1/2 weeks now.  My leg is alot stronger, so maybe if it's one of those treadmills that has the bars I can use to balance and use for support then maybe I can at least manage to walk enough for the test.

 In case anyone is interested, here is a picture of the walker I'm using. It's not a bad looking  In fact if you have a small child, the seat is perfect for pushing them around if you have to get something done and you are not able to carry the child! :) This picture is exactly like the one I'm using.  It was my Big Mamma's walker.  I don't think she really used it, and she never really liked it because it rolls away from you if you aren't good with the brakes.

Anyway, I really wish I knew what tests I am having this morning, and what my doctor will be like.  I know that my Dr. is a lady, or at least I presume female due to the name.  You know I never thought that I would be 28 years old and using a walker, using a shower chair, and unable to carry out most normal every day activities.  But here I am with all of the above and then some.  It just goes to show, that the saying, "You never know what tomorrow holds." is true!  I always thought that if I ever had children I would teach them all about the outdoor things, like fishing, shooting their first gun, basketball, softball, etc. Right now I would just love a day that I could simply take a walk with them!

Maybe one day, there will be more awareness for Dysautonomia, and those of us with this will one day have a way of being able to get back to normal.  A cure would be great too!  Until then, I'll keep on loving my children the only way I can right now.... just being here with them.  Spending one on one time with them.  Having cuddle time and laugh and tickle while laying on the bed.  After all, someone recently told me, "It's not where you go or what you do with your kids, it's how you show them you love them while doing the things you can do."  I may not be able to go on that fishing walk thru the trails at Tannehill right now.  I may not be able to run and throw a frisbee or play out in the yard.  I may not be able to do alot of the things that other moms take for granted, but there are always ways to spend time with my kids!  I'm learning they are more resilient than I am!!!  I may get upset because I can't do things, but they just stop and think of something we CAN do!!!

So I am going to go to this Dr. today, and for the first time in my life I am going to make sure I get all the information I can from this dr.  I am not going to be intimidated out of asking questions.  I am not going to let a treadmill test scare me, nor any other test.  I am going to go into this determined to get answers and help.  After all, I have to children at home, and they will be waiting on me.  My oldest is still waiting for the 2 of us to hit the trails at Tannehill together.  So I am going to turn my fear, nervousness, and all these anxious thoughts into determination.  Determination to soon be back on my feet again and living this life with my 2 beautiful girls doing the things I have dreamed of doing with them.

As I write this last paragraph I am more aware that this blog has rambled and jumped topics, but hey... I've got dysautonomia... it comes with the territory!!!  I'm tired, anxious, scared, and nervous... traveling thoughts are bound to happen!  Tomorrow will be better, and I will have all my updated information posted as soon as I get home and get the chance. Until then... always remember... ... traveling thoughts are bound to happen!  *smile*

Monday, September 28, 2009

Never Alone

It's 2:41 am on a Monday morning.  I still haven't fallen asleep, and now I have heartburn like you wouldn't believe and nothing in this house to help it.  I also have a headache but what else is new ya know!  I did have a great online chat with a dear friend.  We didn't chat about the weather, or farmtown, or anything that easy.  We chatted about my dysautonomia.  She sat and listened to me as I once again went through my story, and then she let me get my fears off my chest.  Have you ever had someone try and talk to you and you think in your head, "Oh no, here they go again... I wonder how I can get out of this conversation?"  I have.  I've had that very thought before.  We're human and after all, we get tired of hearing other people's problems or situations sometimes.  But during this time when I have needed someone to talk to, someone who will just listen and let me get all this pain and confusion about why I'm going through this off of my chest, there has been someone there to listen.  Someone there to encourage me, share scriptures that helped through their hard times, send prayer cloths and beautiful cards of inspiration, there has been someone there.  I think back through my life and wonder how many times was someone reaching out to me, and needed me to be that person for them.  Did I find a way out of it, or was I that person in their time of need?  Galations 6:2 says: Bear ye one another's burdens, and so fulfill the law of Christ.  Have I always done that?  After having my friend bear my burden tonight I was reminded that I should be more vigilant of myself and my actions in the future.  Be more aware of my friends, my family, my aquaintances, even the stranger who may need an ear to hear their cries.  I pray that God will continue to speak to my heart, so that my ears and spirit may be sensitive to those around me.  That when they are crying out for someone to help shoulder their burden for a bit, that I hear their cry.  I pray that I not grow numb to them crying out in desperation, but that when their heart is breaking mine feels their pain, so that I might know how best to help shoulder their pain.  I'm thankful for moments like tonight.  For moments when I'm laying here while everyone around me is sleeping, and I look in my facebook chat and I see a friend online.  I'm thankful that when I said hello, she responded.  I'm thankful that she listened and responded with encouragement and understanding.  I'm thankful most of all, because I know when she said she'd be praying for me, I know she meant it.  After all, she was online chatting with me about my frustrations at 2 in the morning!  I'm thankful that God used this dear friend to remind me once again that He hears me.  When I cry out in my spirit, God why have you left me alone? Why have you allowed this to happen and now I'm alone?  He hears my cries and sends another dear friend by even in the wee morning hours and says to me "My child, you are never alone!  I hurt when you hurt and I rejoice when you rejoice!  I am Your Father, and I have heard your cries and seen your tears."  I love it and am thankful when at my lowest times, when I look at my situation and feel helpless and scared and alone, my wonderful Savior reminds me I'm not doing this alone... after all it's when I'm weak, that thru Him I am strong.  It's when I fall on my knees, that I can stand in Him.  I wrote a song several years ago.  The chorus was something like So if I must fall on my knees, just to keep from falling. Then that's what I'm willing to do. Because that's not much compared, to the cross of calvary, that you bore long ago to set me free.

So if this disease is what it takes to keep me falling to my knees, then it's nothing compared to the cross He carried to set me free.  If this disease is what I need right now to remind me and teach me what He wants me to learn, then I know I will make it. Because I know that God will never place more on me than I can carry. And I know that when I feel like I can't even crawl any further, that He will pick me up and remind me that I am never alone, that He is my Father, and if I can't crawl, He will cradle me and carry me.
So thanks to my dear friend who took your time and listened to me, and allowed God to use you to remind me, that I am never alone.

Sunday, September 27, 2009

One day I will...

It's 1:15 am.  I should most definitely be asleep because I have to wake up early for church in the morning.  But yet again, sleep evades me.  So I thought I'd blog.  I don't have much to say right now, but we'll see how this goes.  Who knows, I may end up with a decent blog, or you may end up reading the ramblings of a woman who has a severe case of insomnia again.
I guess I'll write about my feelings today. It's been one of those days where I have questioned, why me?  I had my cry, in private of course, and I vented in an email to a friend (I hope she didn't mind).  It has been one of those days when reality sets in, and I realized in startling clarity just how many of my choices have been stripped away.  My choice to make it a pajama day or get outside for starters.  Pajama days are fun if you chose them.  It's fun to lay around and doing nothing, if you chose to do so. But having to do so out of the absolute need to reserve strength for the next days events, well that just takes the fun out of it all.  Saturdays used to be fun. Especially this time of year.  Tradition for us has been to get up, get dressed, watch some football at the in-laws and eat chili or hot dogs or anything really.  We have spent almost every single Saturday doing this as long as I've been married to Eric. Well, at least the Saturdays that he didn't have to work.  So today my mother in law calls and asks do we want to come over and eat supper.  Of course we couldn't, because I have been in bed all day with a horrible headache again, and I know that if we go to their house I will most assuredly not have the energy to go to church in the morning.  Just another choice that was taken away from me.
Some people have mentioned that I am handling this so well, and I suppose I am handling it well on most days.  But I am human after all. I have emotions and thoughts just like everyone else.  I look at my situation and I get angry.  I'm angry because I am too young to be laying in bed all day because I don't have the strength to get up and get going that day.  I'm angry because at this point in my life I should be in the yard running and playing with my two beautiful little girls.  I'm angry because there is so much in life I want to do, but the body I'm trapped in screams at me whenever I do just normal things.  So that doesn't leave room for doing the extraordinary things in life or even the simple non-routine things. It breaks my heart.  It hurts me to my very core because I have lost almost all the choices in life.
The only choice I have left it seems, is to fight.  And I'll fight this.  If you know me, then you know how determined and stubborn and hard-headed that I can be.  You know that when I set my mind to something I will move heaven and earth to get it done.  So I have my days that I allow myself to cry, to get angry, to sit and be down just a little bit.  But the next day, I say "No More! It's time to fight this again."  And I'll get up, get dressed, and at least make it past my bedroom door.  And one day I'm going to make it back out into the world of choices.  I may have to learn to choose what type of choices I make, but I am going to get that freedom of choice back.  One day.  After all, I remember hearing somewhere once, that it's mind over matter.  One of these days I am going to learn how to live with dysautonomia instead of merely existing with it.  That's all we really want isn't it? Our life back?  Our freedoms of choice and what we do with this life?
So I'm making a statement right now.  I declare that one day I am going to wake up.  I'm going to be stronger.  I am going to be capable of deciding what I want to do and be physically strong enough to do it.  One day, I'm going to have this disease under wraps, and I'm going to tell it what I am going to do that day instead of it forcing me to sit out this game of life.  One day I will... One day I will.

Friday, September 25, 2009

Dear Friends and Family

Today I sat at my computer and wrote a letter.  I wrote to my friends and family who have supported me and my family through all of this Dys. stuff.  Many of them really don't understand.  They know I'm sick, but what exactly with they aren't quite sure.  I even had one aunt recently say they had given me up for dead! Now I know I'm sick with this, but I'm not quite there yet!!!  *Smile*  So I decided to write a letter to give a little information and inform them of my typical days.  Just something to help them understand that if I decline to go out or do something it is most assuredly not them I am declining, but rather the illness I have causing the declining.  I also wanted to thank them for all they have done during this time.  I wanted to tell them how much I love them and appreciate them.  So I thought a letter was the way to go.  I now have to print copies and get it out to all those friends and family, but that shouldn't be hard.
  Maybe if you have friends or family and you haven't quite explained your situation (should you have a situation) then perhaps a letter to them would be the way to go.  It gives you a chance to share your life as well as a chance to say thank you for all they've done.  Dealing with this without support would have been possible, but by no means would it have been easy!  My family and friends are what give me that extra little "ummph" in my step.  Their encouragement goes through my mind over and over.  I can hear their words reminding me to keep fighting, keep pushing, and to keep trusting God.  So I say thank you.... if you are one of those people.... thank you from the bottom of my heart!

Thursday, September 24, 2009

Good Days, Bad Days

Good Days, Bad Days.  What exactly does that mean? Well before Dys. came into my life a good day was simply a day when I was out and about and everything just seemed to go right. A bad day would have been a normal out and about day as well, only maybe, perhaps everything didn't go my way. Since Dys. came into my life Good Days, Bad Days has taken on an entire different meaning.  Now a good day is a day when I am able to shower and not get sick, and a bad day... well those are classified as not so bad days, bad days, and crummy days. Not so bad means I felt a little rough after my shower but I was able to shower and dress and maybe get out and get some errands done or just get something done around the house.  A bad day is when I wake up feeling not so good, and after I shower I am spent and feel crummy for the remainder of the day. Not able to get anything else done for that day. I may even fall asleep several times during these days, because naps here and there give me the energy I need to just exist as a lump on the couch.  A cruddy day is when a shower is not possible at all. These days I usually remain in bed for the entire day. I usually will sleep for a few hours at a time during those days, and on these days I'm actually able to sleep at night due to the sheer exhaustion of getting up to go to the bathroom during the day.
Today was simply a bad day. Last night I didn't rest at all... insomnia was horrible.  I had a phone interview for disability (the hospital arranged it for me) and after an hour on the phone, I was even more exhausted. Lack of sleep and a lot of questions are not a good combo for a normal person... you throw that at a dys. person and man we are like a bumbling bowl of jello!  I hope that my answers were coherent. I do remember apologizing for the slurred speech a lot.  After my phone interview I rested for a while longer, and managed to get a shower. Some days the benefits of feeling refreshed can outweigh the disadvantages of showering with Dys. Today was one of those days.  I managed my shower (all of which are sit down showers now), got dressed and put a cap on my head.  This was the extent of making myself presentable for the day. After all my mother in law was coming over to help with household chores and I just couldn't stay in a t-shirt only all day!  When she arrived I was fresh out of the shower in a heap on the couch waiting for my heart to quit beating out of my chest due to the shower.  Finally I was able to get "thank you for helping out" out and just lay there for the remainder of the time she was here pretty much.
 It's nice to have help. In fact it is a blessing.  My husband is great. He straightens and does his best at keeping the house up, but with 2 small kids, it can become a mess in a short amount of time.  So I called for backup today and she showed up ready to get some down and dirty scrubbing/cleaning done.  So now I'm laying here watching Christian Music Videos on KTV and typing this blog entry. I have a clean house, my husband fixed a decent supper, and I've had a shower today. The last 3 elements of my day have made my day bearable even though it was a bad day.  So just remember, even when it's a bad day, or worse, there are always small little things that can help make it more bearable!
Dys may try and kick me when I'm down, but it might as well be prepared and know that I'm a fighter! I have alot of support in my corner backing me, and even on bad days, it will not get me down!!!

Tuesday, September 22, 2009

My baby turned 2!

Happy Birthday Aleah! Yesterday my youngest turned 2!  We are planning on having a bigger party in the next couple of weeks as I gain more strength back, but for now we had a good time with a "just the four of us" party!  We had cake and she got her gifts from us. Her sister had saved and bought her 2 pairs of dress up shoes that Aleah loved!  She is a shoe fanatic, so it was a fitting gift!  She had trouble blowing out her candles, so I have several pictures of her all puckered up and attempting to blow them out, but those were stubborn candles! She was saying it's a happy birthday to me!  She's such a sweet little girl and I can't believe that it has been 2 years already since the day she was born! I still remember how tiny she was.  Her head was so small that my 3 1/2 year olds tiny little hands could cradle Aleah's face!  I remember putting her first little gown on her, and it was a newborn sleep sack. It completely swallowed her!  It was pink and had pink lace and a pair of ballerina shoes on the chest of it with the words Tiny Dancer.  It was fitting because she had "danced" herself away from the Dr. during the c-section so effectively that it was a longer than usual c-section! The dr.'s would say, I have her and then she would flip and away she would squirm!  So I called her my Tiny Dancer.  She is still dancing her way out of things today! Sometimes I try and scold her for bad behavior and she'll cock her head to the side, smile real sweet, and dance away! She loves to dance and sing. She's one of my greatest gifts in life and I love her so much.  I wish she could stay a baby forever, but the last few weeks and months she has begun that change from infant ways into cute toddler behavior. I know it will not be long and she'll be amazing us with her grown up ways!  But for now, I hold her in my arms and love on her and kiss all that adorable sweetness right from her cheek.  And I know deep inside that one day, she'll be to big for me to hold and she'll be out with her friends doing her own thing.  So for now I take all the adorable smiles and kisses I can get! Happy 2nd Birthday to my Tiny Dancer. I love you, Mommy

Saturday, September 19, 2009

Dysautonomia... what exactly is this?

Dysautonomia.  It's a big word for something that not a lot of people have heard of.  Unfortunately it is a big word that has affected my life in a big way. It is a rare disorder and is not well known.  There is also no cure, and only the possibility that you can manage the symptoms. It varies so much from person to person that even this is difficult and sometimes not possible.  So far I've written blogs about my story and my personal experiences.  I've not really went into a description of what this disease is or what it can do. So that is what this blog is designated to doing.  Bear with me as I'll use alot of medical terms, but I'll try and simplify it as well as I can. 

Dysautonomia is a broad term that describes any malfunction of the autonomic nervous system.  Your autnomic nervous system (ANS from here on out) is sometimes mistakenly called the "automatic" nervous system.  This mistake is not far off in actuality, because the ANS controls all your automatic functions of your body.  It affects things like your heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, etc.  Anything you do not have to think about, that your body automatically does for you, can be affected by dysautonomia.  

There are 2 parts to the ANS: The sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are necessary when an individual is in danger or under stress. The parasympathetic system controls the “quiet” body functions, for instance, the digestive system. In short, the sympathetic system gets the body ready for action, while the parasympathetic system gets the body ready for rest. And in normal individuals, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs. 

In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent, vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, anxiety and (quite understandably), depression.

Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) And since people with dysautonomia are usually normal in every other way, when the doctor does a physical exam he or she often finds no abnormalities. (prior 3 paragraphs taken from
You can find more information on dysautonomia at 

The Center I am going to for my first visit with a specialist is at and there is lots of information here too!

My situation with dysautonomia so far is that I am rarely able to get up and do things without my heart beating so rapidly I get weak from the moment I stand.  Even on the beta blockers that are supposed to be keeping my rates low, I am experiencing tachycardia the majority of the time I stand or do anything you would consider normal everyday activity.  Tachycardia is basically a word that means fast heart rate.  A normal resting heart rate is anything between 60 and 100 beats per minute (bpm).
For me, dysautonomia causes tachycardia when I am standing, doing any form of light activity like walking from room to room in my home, showering, fixing my hair, getting dressed, or experiencing a temperature change like leaving my house and going out into the summer heat.  Everything I never had to think about before, I have to think about now. I try and space things out so that I have time to rest and bring my heart rate back down before the next thing needs to be done. When I am sitting or laying down at rest, my rates range in the normal range most times. Right now I am at 89bpm and I've been sitting for quite a while. If I were to stand right now, my heart rate would immediately jump from that 89bpm to well over 120, more likely in the 130's. It doesn't take minutes, but seconds, for this to happen to me. I get a heaviness in my chest and a strange fluttering feeling when it really gets going.  It get hard to breathe and if I allow myself to get scared by this, I will hyperventilate. When I am on my feet for any amount of time I began to tire very quickly. Because of the tachycardia I always feel like I've just ran a marathon. My heart is beating at high rates all the time.  Imagine how you feel after sprinting a short distance or after a good 30 minute workout.  You can feel your heart pumping, sometimes hear it pumping in your ears, you are short-winded, and thirsty. You're body sometimes aches.  This is everyday for me from just something as simple as walking to the kitchen or the bathroom. When my heart rate stays high for long lengths of time, or when I'm up and active during the day, eventually I get what most of us with Dys. call brain fog. It becomes hard to concentrate and to think clearly.  Once this sets in I know that if I do not rest then I am going to crash.  When I crash, I become so overly exhausted that I can't do anything. The only option I have at this point is to lay there and sleep until my body recovers.  Usually I will sleep anywhere from 12-15 hours straight and deep when this happens.  I have even slept close to 18 hours straight.  I have to be very careful now because I've developed insomnia so now I'm not resting well. Add this to a body that tires as quickly as mine, and it spells disaster.
During the last 3 weeks I have had other symptoms arise.  3 weeks ago they thought I had a stroke, but all my tests came back normal.  For 3 weeks I have been unable to speak without a terrible slur. This has gradually gotten a little better every day since then.  I think in a few days time I may be able to talk without much of a slur at all... at least I'm praying for this.  For 3 weeks I've had to use a wheelchair or walker to get around. I had lost all movement in my left leg.  I am finally able to move it, yet there is still weakness in it, so I am not able to walk without my walker yet, but like my speech I am praying for this to also get better.
I have my first appointment with a Dysautonomia specialist on September 29th.  I pray that I am able to get more answers then.  Thank you for taking the time to read this. I hope that it answers any questions you may have. If not leave a comment and I will be sure and post the answers. Please continue to pray for me and my family as we fight this together. May God Bless you Richly! Miranda


  Sleep.  One word.  But such a meaningful word when you have Dysautonomia!  Last night once I finally fell asleep I slept like the dead. Not a movement, no waking, nothing. It was absolutely wonderful!  And I know that "slept like the dead" sounds a little harsh. Why not slept like a baby?  That sounds so sweet and wonderful! Well I'll tell you why I didn't say like a baby!  My babies did not sleep! *smiles*  They never really had those sleep thru the entire night moments where not a sound could wake them.  But sleep like the dead? Now that's some deep sleep! You aren't disturbed by anything! And that, my friends, was the sleep I finally had last night!
  Now if you don't suffer from not being able to sleep, then you don't understand why I would dedicate an entire post to the subject! But if you are one who just lays in the darkness at night as still as you possibly can, only to get up later to find something to do because your eyes refuse to get heavy, then you are on the same page with me. Sleep is something that is so vital to me, because without sleep, I become more symptomatic the next day. Without sleep my body screams the next day, "I can't do this!" My heart rates are most always higher. My vision gets blurrier much quicker. My brain is in a fog from the moment I wake up and as the day goes on, I get more clueless. I may repeat things. I may look at you and say, "I've been thinking..." and then I forget what it was I was thinking and wanted to say! I might get up and go to another part of the house, and before I get where I was going, I forget what I wanted or sometimes why I even got up!  There are many days that I feel like I understand my gram-ma Allen more and more.  She never could remember our names. She would list everyone of us until she got to the right person or just gave up... *smile*  I remember her trying to talk to me sometimes, and the word she wanted to use, she just couldn't find it.  So many of my "foggy" days remind me of my Gram-ma Allen.  Since this has happened to me, I am much more understanding to someone else who can't vocalize their thoughts.
  Today, tho, I have awoken with a clear mind! My words are not as slurred. My thoughts aren't all jumbled together like a 5000 piece puzzle in a dimly lit room. Today, my friend, I feel a little more "normal". Whatever that is, because it's been a while since I've had a normal day, so my definition might not match yours. But, I've started this day off without the foggy feeling drifting around me keeping my thoughts trapped inside my mind, and that is something to feel excited about!
  So hats off to sleeping! Hoo-rah for feeling rested! And a glorious day to you!

Friday, September 18, 2009

Poem to spread Dys. Awareness

This is my story, This is my life
Doesn't look like much on the outside
At times I look normal, just like you
But for now I've got a cool walker, in a shade of blue
I refuse to sit here and wallow in my pain
I know that my God will have me walking on my on again
But there is always the case of my beating heart
From that battle it seems I can't part
For the moment I stand upon my 2 feet
This little heart of mine races and beats
Have you ever ran a race and felt your heart pound
Like it's beating so hard you fear falling to the ground?
That's every day, every moment I stand
That's what I just need you to understand.
I wanna be out there doing things I adore.
Like playing with my kids in the yard and more
But doing just simple things like taking a shower
Seems to wear me down for hours and hours
So I'm writing this poem, this one huge plea
Can you spread the awareness for people like me?
Can you tell a friend, take a moment or two
And tell them to learn about dysautonomia too?
Because it will only take you and then the word spreads
And hopefully one day some doctor will feel led
To do a little research, find more answers, who knows a cure
And you've done your part to end a terrible war
Cause for people like me, that's exactly what we're in
A battle most can't see, because it rages on deep within
Attacking all the automatic things you take for granted
Like breathing, and blinking, heart beating not rapid!
Please paste this and post this and spread the word
About Dysautonomia so maybe one day it might be cured!
WRITTEN BY: Miranda L. Powell
Diagnosed with Dysautonomia

W.Y.S.I.W.Y.G. (wizzywig)

W.Y.S.I.W.Y.G. - What You See Is What You Get
Once upon a time this is what I used to describe myself with one word. I do remember a time when it held true. What you saw on my outside was exactly what you got! But times have changed. The last several years to be exact. I remember the day when I first felt really strange. I had a heaviness in my chest and felt absolutely horrible! It was during February of 2004 and I was pregnant with my first child. Up until this day everything had been going great with my pregnancy. I felt fine except for horrible morning sickness, or as I called it all day and night sickness! I'd gotten up and gotten dressed for work just like every other day but on this day I didn't feel well. I felt so bad that I thought maybe I have a really bad cold or the flu. I went to work but my headache got worse, the heaviness in my chest got worse, and so I called my doctor and told them my symptoms and the nurse said to come in immediately. I told my boss and left work headed to see my OB. Once I was seen by the nurse she had a look of concern and asked if I had a heart problem. I told them no. Apparently my heart rate was very high, even for during a pregnancy. What I had been thinking was related to pregnancy was most assuredly not! I had never been pregnant before, so how was I to know that any moment you stood your chest wasn't supposed to feel all a-flutter inside and heavy? My blood pressure was also very high so I was put on immediate bedrest and as my heart rate remained high, I was given a medication to help.
I remained on bedrest until April 1, 2004 on the day that I had an emergency c-section due to my elevated heart rate and blood pressure. I followed up with my family doctor a few weeks after having my beautiful little girl and after a routine EKG and thyroid test she sent me on my way with lose a few pounds to help your blood pressure and have a nice day. It never even crossed my mind that I should probably get a second oppinion since after all I was still young and had very little experience in going to the doctor on my own. I lost some weight but still had trouble with my heart rate, although eventually my blood pressure came down enough that I could come off the medication I had been put back on after the pregnancy.
I continued to have trouble with my heart rate staying elevated, but since I was told that I was fine, I chose to ignore it. I would tell myself, "You are just tired because you have a new baby!" This turned into you are tired because you have a toddler. When my first child, Serena, was 3 and 1/2 we had our second child. This pregnancy was the same as before. I was find and suddenly my blood pressure would spike close to the end of the pregnancy. Although this time I had blackouts as well. And once again I told myself that it was due to the weather as it was very hot that summer. And once again, the doctors didn't seem alarmed by them. I had Aleah by emergency c-section on September 21, 2007. And just like the first pregnancy, instead of delivering helping my blood pressure to drop, it remained up for several months and I was once again placed on medication to help lower it. I also had problems with dehydration during my first pregnancy, so this time around I drank so much water I thought I would float away. I literally carried 2 bottles with me everywhere I went and just kept refilling them. Yet still I had ended up dehydrated.
I got home with my new baby and my toddler and realized that this time around it was much more difficult! I would simply say to myself that I had a baby and a toddler and that was reason enough to be tired all the time. But as I look back I see that I was more tired than I honestly should have been both times! I know other moms who have small children, and are able to continue everyday normal life things. But I was becoming tired just taking a shower! As I look back now, I honestly should have made a follow-up and gotten checked, but like they say; "Hindsight is 20/20". During the following summer of 2008 it was much more difficult to tolerate the heat. I would tire much more quickly than normal and also had a blackout or two.
It is now September 18, 2009. It has been 5 years and 7 months since my high heart rate first became noticible. I was diagnosed with dysautonomia in June of this year. Looking back now, my husband and I have noticed where over the last 5+ years I have slowly began to slow down. I have slowly and unknowingly stopped doing many things I love to do. And I know that many will say that once you have kids, this happens! But it hasn't been the case for me. The things I love doing aren't things you can't do with children! But I'm going to go more into that in the next blog. I just wanted to give a short history in this one.
But before I go, if you are interested here are some websites that are great for those of us with Dysautonomia and even those who are related to or friends with someone who also has Dys. I've had the most luck finding great information just with Google. Others recommend using But there are some websites and groups where you can read personal journeys and ask questions to those who deal with Dys. I'll post a few today and if I stumble across any more I'll post them as I continue this blog. Until then, have an awesome day! Great blog written by a young man who has Dysautonomia. (in the search box in the upper right hand of the screen type "Dysautonomia Awareness" and it's a great group that I belong to. This is a great site to get basic information on Dysautonomia. There are also answers to questions about kids who suffer from Dysautonomia.

Thursday, September 17, 2009

Meet Me!

I got this idea from Christina when she started her blog, (thanks girl). I have been pondering the idea of starting a blog that people can read and learn more about the struggles that people with Dysautonomia face every day. I know that my blog can not compare to those like Tyler's of, yet I'm going to give it my best effort. I hope that in reading these blogs that awareness for Dysautonomia and the struggles that people face with it every day of their life.
I suppose I can officially introduce myself. My name is Miranda and I am, as of now, 28 years old. I've been married for almost 8 years and my husband, Eric, is my greatest supporter. We have two of the most beautiful little girls in all of the world. Our oldest is Serena and she's 5 1/2 now. Our youngest is Aleah and she'll be 2 in a week. Everyday I look at them in amazement and wonder where the time has went. When I'm able to do the things I love, those things would be fishing, singing, very amateur photography *smile*, and grilling or cooking a great meal for my family to enjoy together. When I'm not able to do those things I spend a LOT of time on the internet. I enjoy computer games and facebooking. And when I'm able to focus and concentrate I love manipulating and editing pictures that I've taken. Occasionally I play my guitar and even more rare these days I will attempt to write a poem or a new song.
Sadly I've pretty much managed to sum up what I do in a very short paragraph! And since this is my first blog I really have no idea where to go with it next! *smile* So having said that I'm going to start with a short introduction to Dysautonomia, and hopefully over the course of this blog, whoever you are that is reading this will gain an understanding of this disease. My friends and family have all told me that until I was diagnosed they had never heard of this. In fact until I was diagnosed, I'd never heard of it. It has been about 6 years of dealing with an issue that I didn't know I had until it progressed and I was forced to have to see a doctor. You see I'm one of those people that would rather stay home sick and suffer through it rather than see a doctor. I think I have only seen a doctor 2 times in the last 6 years that wasn't related to pregnancy. Once was a urinary tract infection that I ignored until I was about a day from being admitted to the hospital according to my doctor. By that point I could barely walk due to the pain and she said it was almost a bladder infection it had gotten so bad. But in the last 3 months I've seen more doctors and had more tests than I've had with both pregnancies and everything else in the last 8 years! And unfortunately, the only answer I was given led to more and more questions! And this is where I'm going to begin my next blog. The beginnings of this journey of dysautonomia that has taken my choice from my life.
Until next time, have a great day and enjoy your life! You never know when the choice to do the things you love will be limited or taken away!