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!  http://www.mvprolapse.com 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!

... 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*

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.

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.

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!

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!!!

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