a lost voice is back...

Hey everyone! I've been either busy or sick and as a result my blog has been vacant of a lot of posting! But today is a pretty good day. My kids are doing their homeschool work which at the moment is a book about halloween that they are coloring and reading. This means I have a few free minutes to get a quick blog in. 

So, what's been happening around here?  I'm still hangin' in there. I did have another silent migraine episode or something on Saturday and as a result I couldn't speak for about 3 days. But thankfully things are back to normal. I still find myself having to think sometimes before I can get the words out. I know what I want to say, but I have to concentrate at times to get my mouth to get it out! Weird feeling. That should pass soon too, it usually does. I'm also having to try and "fix" my sleep schedule again. Everytime I have a bad episode I sleep for HOURS more than the average person for several days. And then I have a day or two where I can't sleep much at all. Then I have to start working myself back to sleeping a normal nights sleep. Last night I lay down and just stared at the ceiling for so long just trying to bore myself to sleep!  Finally I was able to fall asleep and slept well enough that I could get up 2 hours earlier than yesterday. So by the beginning of next week I should be back to rising around 7 and sleeping by 11. That's the goal anyway.

Some of you know that we (my husband and I) decided before children that homeschool was the way to go for us. It makes more sense now than it ever did and I'm so grateful that I'm allowed the opportunity to spend all this time with my kids. Watching them learn every day and getting to be a part of that is a blessing! Granted our homeschool routines are likely MUCH different than your average family! For starters I spend the entire lesson sitting with my feet up on the sofa. We pull a fold up table out from under the sofa and they drag over a couple kitchen chairs. I have all our supplies on the counter behind the sofa so everything is within an arms reach for me. This helps me not be as symptomatic as if I was standing or sitting with my feet hanging. This small detail is very important because the longer I stand or sit with my feet hanging the less blood flow I get to my brain which means less oxygen and that just spells disaster! But we have a system that works for us and so we use it. The girls have their responsibilities as far as who get/does what. The less physical work that I have to do, then the more clear-headed I remain. 

Anyway on a good note. I was so scared and worried going into this school year. I worried all last spring and throughout the summer. I just couldn't figure out why my oldest daughter, now 7, couldn't read yet and why she was still having trouble writing some of her alphabets correctly. I even talked to my husband and mother in law about putting her in public school because I felt as if I were failing her. After much encouragement and a lot of prayer I did some research online about kids who struggled to read and write like she does. I found a lot of answers. All under one little word... Dyslexia. We haven't had her tested because it usually isn't covered by any medical insurance because it's not considered a medical problem and it's VERY expensive. But she meets all the criteria for a dyslexic child. So I changed my method of teaching her. I let her guide me in what worked best. I never considered asking a child what would be best... after all I am the teacher! How blind we can sometimes be as adults, huh!?!  So after a couple weeks we worked out the kinks. I left the alphabet up for her so that she could look at the letters and then write what she saw. This worked well because she is great at drawing what she sees, so she would refer to the alphabet every time she came to a letter that she typically mirror imaged. Now it did take time. I still catch some of those letters mirror imaged if she's in a rush. I still have to look at her work and correct her by letting her know she mirror imaged a number or a letter, but by doing this she's began to check her own work more and compare it to the correct letter/number to see if they match. It's working out great! 

Another thing I learned about kids with dyslexia is that they may be able to read a word at one moment and in one situation but in the next not recognize it. This was SO true with my daughter! Take a word out of a sentence and she'd be lost. Take the pictures away from her reading and she had no way of guessing what those words were! So I let her guide me in how to correct the problem. Phonics don't really make sense to her. When she sounds words out, there will be sounds and letters that aren't even in the word! BUT if we cover part of the word and work one letter at a time, most of the time she can get it. Her reading has improved from reading simple words like cat, dog, etc to reading at her level! I did a reading test this past week on her and was surprised to find how much she'd improved! Very blessed to have family who supports us in our decisions and prays for us to find guidance! I know that without God guiding me I'd have never learned so much about my daughter and would not be able to teach her the way I do now! 

Let's see... other news in the Powell household.  We've had to do numerous Dr. trips. Vision for the oldest, she needed very low prescription reading glasses. Dental for both. The oldest had a couple small cavities and got sealants. The youngest, now that's a dental nightmare. She's having dental surgery the 19th of this month. Keep her in your prayers. She also had to have a pre-op appointment before the surgery and we've gotten that out of the way. Total Dr. visits in all so far? 6 I think. I might have missed one in my counting though! That's not counting my husbands dental visits! Whew, that's enough to wear a healthy person down...just ask my mother in law who has taken us to every single visit! (Thanks Ni!) 

For an extra curricular activity for the girls they chose to do the Build and Grow program at Lowe's. They go twice a month on Saturday morning and build a project. They get a certificate and a badge to sew on their Lowe's apron. It's a great project and I was surprised at the amount of kids they have going! The girls really enjoy it and we've made this our family day. They get to spend any chore money they've earned and they get to pick where we eat for lunch. So every other Saturday they have chosen Chinese food! Good thing we all like East Palace! :) Maybe next time they'll choose Mexican, Italian, or anything else kind of food... but I doubt it! 

Anyway, the oldest is finished with her book. She's colored it and then she's read it aloud to me, all on her own. Two months ago that wouldn't have been possible, so right now I'm a very proud mama!

Until next time, stay strong, fight hard, and LIVE! Life isn't worth anything if you don't live it to your best ability! Keep fighting Dys, and have an awesome day! Oh, and here's some spoons to help you through your day!

…there is always something there if you look that you can be thankful for!

Just want to say first and foremost that this blog entry might be a little confusing at best.  My thoughts are all over the place, and so might this blog be!  But I do hope that it’s coherent enough for you to understand my point! Enjoy!

On Thursday I had my visit with my Dysautonomia Specialist, Dr. Susan Phillips at The Autonomic Disorders and Mitral Valve Prolapse Clinic in Birmingham, Alabama.  I highly recommend this Dr. and this clinic.  So before I even begin to get into my quick little blog about my visit, I’ll list their website here for you if you are looking for a great place to go and an awesome Dr. for your dysautonomic disorder.  http://www.mvprolapse.com  And don’t let the website link fool you, because it’s not just a clinic for mitral valve prolapse but also for autonomic disorders.  So check it out!

Ok, so here is how my 2nd visit went.  I arrived and according to the nurse every other visit I will now I have an EKG, and on the others I will have an Echocardiogram and tread-stress test.  This visit was another EKG and things were ok.  I then was checked over by Dr. Phillips.  And considering that I couldn’t walk or talk the last time I saw her, she said I looked great. :)  So she checked my heart rate and blood pressure sitting and standing, and then we did what I call our chat thing.  It’s different than when other Dr.’s sit back and say in their authoritive tone “Ok, tell me. What seems to be the problem?” *smile*  Dr. Phillip’s does sit back in her chair but she doesn’t seem all above you or anything.  When she asks what is going on it’s a different feeling.  So we talked about my problems sleeping, about how I sleep great for a week or week and 1/2 and then I have about the same length of time with no sleep, and it goes back and forth even on the same dosage of my sleeping medication.  Which for those of you who are wondering I take two .5mg of Klonopin every night.  So some nights I’m sleeping so very great, and some nights not at all.  So she informed me this was completely normal for someone with my particular wiring, and we are now adding Trazidone (can’t remember the dosage) to the mix on the weeks when sleep isn’t on my radar.  We also talked about my horrible time I’ve been having with the migraines, the ones with and without the headaches.  I told her I had no clue what I was having until the neurologist explained things to me.  She told me I’d need to follow up with Dr. Hudgins (neurologist) again for the migraines since that would be his department, but that I could try topamax.  And since I still have a prescription for it from a diet clinic I was trying before everything fell apart (and no I wasn’t taking anything other than that and the b-12 complex shots… I know better and was being monitored by a Dr. who also was the one who did say I should be checked again due to tachycardia). So I’m trying the topamax because they are supposed to be good at preventing headaches. I have a couple prescriptions of it and if it works it will save me the trip to a neurologist and all that cash spent going to one since I’m not insured still.  Besides, if they work it will give me the push I need to get the B-12 shots again… I lost 20 lbs during that time… :)  I have to go back to Dr. Phillips again in January.  And if insurance is active then, we’re going to do some blood work, hormonal tests, and a sleep study I think.  I did ask her what exactly it is that I have.  What exactly is it that is wrong with me.  She told me I didn’t fall into a category.  That I have an autonomic dysfunction and I’m wired differently.  She told me that if anyone asks, that’s what I should tell them, that I’m just wired differently, and that they will probably say “Well I already knew that!”  That gave me a laugh because it is exactly what my friends or family would have said… :)   So I think my latest appointment with Dr. Phillips was great and I feel more optimistic about my future after Dr. Phillips told me she did not see me in a wheelchair in 5 years or anything like that.  She said that she feels that I’m on the right path and that I am already doing much better than I was just 7 weeks ago.  I agree with her.  I am able to take some stand up showers now.  And if I could just get the migraines figured out I might would be able to take a drive alone.  Who knows… But if Dr. Phillips thinks that I’m on the right path, then I trust her.  After all, I’m feeling much better since my first visit with her and her adjustment of my medications.  And for the record, I know it isn’t all Dr. Phillips.  I know that God has had his had on my life from the very moment I was born.  I know he laid out the pathway to Dr. Phillips office door, and ultimately all the ways I’ve recovered are because of God and His graces!  So trust in your Dr.’s but trust in God first and foremost!  Sometimes God chooses to heal us instantly, sometimes we must wait a while, and sometimes he uses wonderful Dr.’s with positive and sweet dispositions to help us until that time comes.  That’s what Dr. Phillips and her staff is to me.  They are my gift from God until he decides to heal me.  And if that time doesn’t come, then I am very thankful for the gift that the paths God placed me on led me too! So there you have it.  My most recent Dr. news and how I feel about it.  Hope that your day is going great, and is full of thanks no matter what your facing, because there is always something there if you look that you can be thankful for!

My God has been all I need and then some!

Today I went to see a neurologist.  He checked my reflexes and balance and other things.  He asked some questions about what has been going on and some other things.  And finally he told me that this that is going on, is NOT M.S., is NOT any other muscle disease, and there is NO damage to my central nervous system.  He then proceeded to ask me if I had a history or diagnosis of migraines. I told him that since 8th grade I have had migraines and the diagnosis.  He told me that the recent onset of problems I'm having are due to migraines without the headache.  That this combined with my dysautonomia had caused the onset of these problems.  He told me that within time, probably sooner than later, that I would make a 100% recovery from these symptoms. I would regain my speech and walking!  I told him that I had never heard of a migraine without a headache. He told me that migraines should really be called a migraine syndrome because they aren't just headaches.  He also told me that my Dys. Specialist has me on a good combination of meds for my heart rate and insomnia, but that I might need to up the dosage for my insomnia.  He told me to drink a lot of water due to the fact that dysautonomia patients have a low fluid volume.  That the excessive water would help to keep the fluids built up and keep my hydrated, therefore helping the dysautonomia.  I need to avoid caffeine and only have small amounts if necessary.  He also suggested that I begin aerobic excercise like brisk walking. Starting with 5 minutes every day for a week, and each week add 2 minutes.  This would build cardiovascular muscle tone, therefore helping the dysautonomia.  For my voice I am to practice speaking and singing as much as possible.  I learned today that speaking and singing are controlled by different sides of the brain. So in order to rehabilitate my speech, it requires both. He told me that the most important thing to try and keep anything like this from happening again is to simply get my dysautonomia under control and managed.

So today has been a wonderful day! Full of good news!  I'm so thankful for all those who have helped during this time.  Without friends and family I could never have seen my dysautonomia specialist, who scheduled the visit with a neurologist with an understanding of neuro and dysautonomia.  God has worked out each and every fragment of the last 5 weeks.  I still have to rehabilitate and I have a lot of work ahead of me, but yet again with God's amazing grace and strength a full recovery of normal speech and walking is in reach.  Then all that will be left is managing my dysautonomia!  I know there is no cure for my dysautonomia, unless God chooses to do so, but after diagnosis of it, I've learned that I've had this for my entire life.  I know that this means that I can live with dysautonomia, and now that I know what it is, I can manage it for a more liveable life!  Of course if God chooses to see fit to heal me of it, then all the more better!

  This entire journey of trying to find the cause of my problems has caused me to learn what it means to fully rely upon the Lord.  For the first time in my life I've truly been at a place where I knew I had a problem and no one could tell me what was wrong.  For the first time in my life, I had to depend on someone for help with everything for more than one day.  For the first time I couldn't even depend on myself to take care of myself!  For the first time in my life, I was truly reliant upon God!  I have learned a lot about standing on the promises of God. I've learned a lot about trusting in a never-failing savior.  I've learned a lot about myself.  I feel like I know more than ever without a doubt that I am loved, cared for, and wanted.  By my God, my friends, my family.  God's never ending love has reached me from family, friends, and even complete strangers.  Each step of the way I have been shown God's love, and that he has never forgotten me, and that he has never failed me.  This whole experience has been a struggle physically, yet a victory due to the spiritual growth I gained.  Through my weakness I found a strength I never thought I had, even though I've had it all along.  I found my strength in my Savior!  He was there all along, I just had to reach a weak point, so that there was nothing left of myself so I could see God's strength!  It's funny how when we finally lose ourselves, we find God!  When we finally get past the point of "I can take care of me" or when there is a point that we can't take care of ourselves, and we move that strong headed flesh aside, that we see God taking care of us.  We can finally see clearly.

  I guess what I'm trying to say is that I've learned that when I try and take care of it, things fail.  Once I let God take care of it, all doors became open, all pathways became clear, and I was guided step by step to the right path.  I became dependent on God and I never lacked anything! God has provided financially as well as medically.  There hasn't been a moment when God has not intervened and made things possible. He is my everything.  My God has been all I need and then some!

... 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 walker...lol  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*

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 http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm)

You can find more information on dysautonomia at 

http://www.dinet.org/ and 

http://www.dynakids.org/

The Center I am going to for my first visit with a specialist is at 

http://www.mvprolapse.com/ 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

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 About.com. 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!

www.12morepages.com Great blog written by a young man who has Dysautonomia.

www.facebook.com (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.

www.dynakids.org This is a great site to get basic information on Dysautonomia. There are also answers to questions about kids who suffer from Dysautonomia.

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 www.12morepages.com, 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!