Thursday, December 17, 2009

Christmas with the Crosby’s

Today is the first night I’ve been awake in several nights! For this I’m thankful! For all of my friends and family who have been praying for sleep, let me tell you, I’ve been sleeping!  I have slept more in the last 4 days than I have in months! My only description for it would be “wonderful!”  I do believe that all of my most recent problems have merely stemmed from fatigue from the insomnia. I know that the insomnia is caused from the disease, but by itself it’s enough to put oneself through the wringer! I’ve done alot of researching concerning my blackouts and going unconcious, all of which have stopped since I’m sleeping and feeling rested.  I’ve learned that there are a couple of things that could be causing this, one related to my dysautonomia triggered by fatigue and one related to my migraines also triggered by fatigue. I believe the migraines are the culprit considering the headaches involved. But Praise God! I have slept for the last 4 days. Not only at night for the most part but I nap and nap deeply several times during the day. I look like one of the elderly in my recliner. I have my lap blanket, my shoulder blanket and I’m all snuggled up snoozing away! Tonight is the first night I’ve struggled with being awake, but I’ll get some sleep before Eric leaves for work in the morning hopefully in the morning.

It’s been an interesting couple of weeks. I’ve had the medical issues with the blackouts of course. I stayed with my mother-in-law from Sunday night until Friday night. The first black out she personally witnessed she was admittedly scared. The last one, my daughter woke her in the middle of the night and I was told later that she just let me lay there and told my daughter that “It’s ok, mommy will wake up eventually” and they just sat there waiting. So after a week, she had grown accustomed and tired. On Friday evening they packed me up and shakily I made it to Tannehill Park to the cabin my parents had rented for the weekend. By the time I arrived I was nauseated, gagging, and weak and then my dad, in the camping spirit, lit a fire in the fireplace and almost suffocated me! *Smile* We got the doors open and eventually the coughing and stomach spasms stopped and I got cool enough to sit with the family and we at Bob Sykes for supper. It was a good meal but I mostly enjoyed the company!
The next morning, I decided it easier to get my dad to carry me home to shower rather than having Eric find all my thing and lugging my shower chair to the cabin for one night, so I went home and got dressed and we headed back to the cabin. By now my dad had lunch fixed. Bless his heart he had grilled burgers in sleeting rain! But they were good! During the meal I began to feel the room spin and it never stopped. Unfortunately when you “gotta go” you “gotta go” so Eric helped me to the bathroom. I had almost made it halfway back to the living room when my strength was gone and I hit the floor like a ton of bricks. Eric is great at helping. I came too with a pillow under my head and a blanket covering me. They got me to the couch where I slept for about 4 hours. This was the last time I believe I’ve blacked out lately.  

That evening dad and the kids made a campfire and we roasted marshmallows! I haven’t done this in years, so I made them get me out there, but eventually told them I had to make like a geriatric and admit I was done in. The kids enjoyed themselves despite the cold. The kids opened a few gifts, and played a bit and we pretty much called it a night. We had our Christmas play at church the next morning, and Eric and Serena were in it and I was supposed to sing if able. So an early morning was ahead of us.
Mom, Dad, and my nieces and nephews made it to the mornings play. We spoke to some church familly after service, made our picture, and then went to Cracker Barrell as we always do when my parents visit. I hated saying goodbye yet again, but I always enjoy spending time with my family! I’m looking forward to being able to travel again and having an old kind of Christmas again, where we all sit around mom and dad’s living room and mom and dad sit all close together and the kids are all in the floor and their is wrapping paper everywhere! It’s been way too long, but in the mean time I’ll settle for these cabin get aways, because after all, it’s about loving my family and being together no matter where you must be! Merry Christmas to my family down in Georgia! I love you all and to those I didn’t get to spend Christmas with, I miss you and I hope you Christmas is one to remember as mine was!



Tuesday, December 8, 2009

Frustrated with my Computer Blog Uploader

I had this really great blog, or so I thought, all typed up, tags in place and about to put in the title and press upload, and then it happened.  Whatever "it" is I still don't know, all I know is I lost my blog. I do know that there were 7 paragraphs and 1700+ words in that blog, and I'd spell checked it and everything and in my opinion it was a great one.  In reality my computer might have done myself and my readers a favor as this blog could have just been a jumbled mess of confusion due to the weeks of insomnia and the numerous pills I am taking to sleep (prescribed) but all I get is a hungover feeling the next day.  So maybe you will be getting this blog instead of a wonderful one, or maybe you will be getting a better one.  And the way I'm feeling this blog, if it's better, then the one I lost was a really crummy one.  
So I spoke with my Dys. Spec. office nurse today.  I'm being taken off one of my medications and they are adding more of one of the others. I may have to have a sleep study done quicker than they first suggested, and I may need to see the neurologist again as it was suggested to me that these episodes of blacking out and unconcousness with the confusion may be linked to my migraines, especially since I have excruciating headaches afterwards. I do know that I'm really tired of falling and passing out and blacking out and forgetting what happened over and over.  Last night I thought I could go to the bathroom alone. After all, everyone but me was asleep, so why wake them right? WRONG!!! Well I made it to the bathroom. Was only just a little shaky. It was the trip back that was the problem.  Halfway back to the sofa belonging to my mother in law,  where I've been since Sunday night since I blacked out several times and couldn't make it home, I felt things quickly going hazy. Next thing I know my head is cradled in Eric's lap and he's calling my name.  I'd managed to do it again. This time I'd hurt my chin/jaw (face planted on an upside down plastic tote the kids had been playing with), rammed my left knee and shoulder into the floor leaving a carpet burn on my knee thru my pants.  So that was yesterday and todays early morning hours, and I had this great blog written detailing my call into my Dr. and all that good stuff, but now you just get this simple blog.  Long story short, I'm tired, still not sleeping but meds have been changed around some so maybe that will offer some sleep.  I may need to have a sleep study done before insurance kicks in as well as see the neurologist, but once again I'm just going to trust that God is going to make a way. Whether that be allowing me some refuge from my symptoms until I can have the testing or make it so that all my disability claims are accepted. Whatever it is, I know that God's will is the perfect one.  I know there is a time and season for every thing because God's word tells me.

A Time for Everything (Ecclesiastes chapter 3)
1There is a time for everything,
and a season for every activity under heaven:
2a time to be born and a time to die,
a time to plant and a time to uproot,
3a time to kill and a time to heal,
a time to tear down and a time to build,
4a time to weep and a time to laugh,
a time to mourn and a time to dance,
5a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
6a time to search and a time to give up,
a time to keep and a time to throw away,
7a time to tear and a time to mend,
a time to be silent and a time to speak,
8a time to love and a time to hate,
a time for war and a time for peace.


I marked some in bold because for me they stand out. Healing, mending that which is torn, peace for that which is war ridden.  My body needs healing, it needs mending in the torn and broken places, and I need peace in my body, mind, and spirit because this disease causes a war and battle to rage day in and day out within and without. It affects not only my body and myself, but my family.  My husband and children are suffering from watching this disease ravage itself upon me. But I know, because God's word tells me, that for everything there is a season.  And I know from watching the world that God created, that seasons come and seasons go. And I just have to wait upon the Lord.


Isaiah 40:31  But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint.


I'm just waiting for the day when I can walk and not faint, when I can run and do every day things and my body doesn't grow weary.  
So again, I'm clinging to God's scriptures, to his promises.  He gave them to us, so we might as well use them!!!

Monday, November 16, 2009

I have and will always put my hope in Your word

It’s funny how reading one sentence can change your whole outlook.  Last night I cried for hours.  I don’t mean I say I cried for hours when I only cried for a few minutes here and there.  I literally mean that tears silently flowed for several hours and no one in my house even noticed.  I lay on my side, chatting, playing a game on the laptop, all the while the tears just kept flowing.  I’ll admit it. I felt sorry for myself.  I’m human and I felt it unfair that once again I was laying in bed with another stupid part of a disease that I felt was unfair that I have to begin with.  I cried myself deeper into a hole, that if I’m honest I’ve been allowing myself to sink into for a while now.  I’ve been smiling and laughing and trying to rejoice with the rest of my small world that I’m walking and talking, when inside I was still so upset that yes I am walking and talking again, yet I’m still too tired to really and truly fully enjoy it.  I have a good day sometimes.  I rest all day on Saturdays so that I can enjoy my Sunday mornings and get as much as possible from the church service.  But inside for the rest of the week I sit home unable still to do the things I truly desire to be doing.  I honestly am thankful for all the great things in my life.  I have a wonderful family.  I have 2 beautiful and smart children who I believe love the Lord even at their young and tender age.  I have a wonderful husband who puts up with all of me even when I can’t tolerate myself.  I have a great family, and I thank God for them every day.  I only wish I could enjoy more things with them.  I only wish I could spend more time up on my feet doing things with them.  Things I probably would have once taken for granted had it never not became an option.  So I admit I have allowed these things I have been unable to do to bug me to a point that I have just dug a hole.  It started as a small hole. Just something I thought I could bury the pain of the loss of those thing in.  And day by day it grew and grew into the massive darkness that surrounded me.  Until all around me all I can see is the loss.  So last night I lay in bed silently crying for hours.  I lay their trying to explain to someone how I felt, but realized that they could try all day long to understand but they truly couldn’t.  I got to the point that this didn’t bother me, and I just talked. I talked until I had nothing really left to say. I talked of how tired I was. I talked of how when I woke in the morning I was already too tired to fight that days struggles.  This person told me I needed to quit letting the devil win, and that I needed to fight.  But I replied that I had nothing left to fight with.  I have no energy left at all.  It takes all that I have these days just to exist.  And it’s hard and frustrating because on the outside I look just like everyone else, but my insides are so tired that I have nothing left to give at all.  And that was pretty much the end of the conversation.  I felt some better because I’d finally just poured it all out, well most of it, and sometimes it’s just good to do that.  I cried a little more, and then I was able to stop crying for a while.  I posted a post on my facebook. It was simply this. “I'm having a hard time with this disease.I feel broken in so many ways, i can't explain.I'm tired in ways I can't explain.So far I've done ok, but right now I need rest in more ways than I can explain.I need to find a way to get out of the dark hole this disease has pulled me into.I need the prayers of my friends now more than ever.”  I got responses back from my friends.  They were useful and helpful to me so I’m going to post them each.
“Miranda, I am so sorry that you are living through this painful trial...I am praying for you..I hope that God will continue to bless you, give you strength and peace...Love and prayers, Lori”  “Prayer is happening! Eva” “praying Miranda, Keith” “miranda, God has moved mountains for you, Stand on that! Tell satan he is a lyer, and you want stand for this, God brought healing to your body, and by Jesus's stripes we ARE HEALED, in the name of JESUS. love you and prayin. Joanie” “the enemy has been defeated miranda! you are already a walking testimony! i love you and will be praying for you today! Laura” “Speak it as though it were Miranda..not as it is...SPEAK IT AS THOUGH IT WERE...IN JESUS NAME........ Cindy”  “defeat the enemy......stand on God's promises. Anita” “Always remember the Lord is our strength when we are weak. He is our healer and our refuge. Lord I pray over my sister and I speak Healing and rest in the name of JESUS!!! Thank you LORD!!! Love ya:)  Glenda” “Miranda the Lord has brought you a long way, and he's going to take you the rest of the way. I wish I could make all this go away. But, we know someone who can, just trust in the Lord with all your heart. He created your body and knows your body better than any dr. ever can. He will give you the strength that you need. He is our refuge in time of trouble.  Lona (my mom)” “I love you and I am praying for you. Emily” “I love you and I am praying for you. Angela”
I read all of these and at the end I looked to my left and saw my daily scripture that I have on facebook.  It was Psalm 119:143
"Trouble and distress have come upon me, but your commands are my delight."  And it hit me.  Trouble and distress.  That was all I had been feeling.  This disease and all that goes with it is summed up with those two words… trouble and distress.  So I looked up the rest of the scripture that surround that one.  And starting with Psalm 119 verse 144 it reads like this in the NIV.
144 Your statutes are forever right;
give me understanding that I may live.
145 I call with all my heart; answer me, O LORD,
and I will obey your decrees.
146 I call out to you; save me
and I will keep your statutes.
147 I rise before dawn and cry for help;
I have put my hope in your word.
I could not have said it better. So my prayer is this.
Trouble and distress have come upon me but Your’s oh God, Your commands are truly my delight.  I ask that You give me understanding that I MIGHT LIVE!  With this disease I live, but there are days when I feel I I am not living but merely existing.  I want to LIVE!  I want to feel alive!  So I call with ALL MY HEART!!!  Answer my cries Lord, and I will obey your decrees!  I call out to You. SAVE ME from the darkness and despair of this disease! and I will keep and obey your Word!  I am rising before dawn and crying for help; and I have and will always put my hope in Your word. Your child, Miranda

Sunday, November 15, 2009

Another day another trial

Today I had another of those silent migraine episodes.  It wasn’t nearly as bad in intensity though, thank God.  But I am still suffering from the slurred speech and my head is hurting now in the “afterglow” of it all.  I knew last night that something just wasn’t quite right.  I was dizzier than usual and my balance was way off.  The girls kept acting up after we got them into bed and each time I’d get up to get them calmed down the balance was worse.  I just didn’t feel right.  On top of that I could not get to sleep.  Around 3 am I suppose I started losing my vision, it was getting blurry, so I just rolled over and tried to get to sleep.  Not sure what time it was when I was finally able to get to sleep.  I felt relatively fine, just tired when I woke up, and went to get my shower.  During my shower I got weak and the nausea hit.  This isn’t really anything new, as it happens quite often in the shower so I used the shower chair and finished my shower, got out and by the time I made it to my room I had to just lay down I was so weak and then it hit.  Confusion.  And when I tried to tell Eric what was wrong I realized that I couldn’t speak either.  Everything was just a garbled slur.  So here I am again, back to not being able to voice anything! Life is not fun sometimes!    But once the initial confusion wore off, the slur seemed to get a little better too.  But here it is around 6:30 in the evening.  I missed church due to the stupid nausea when I made any movement.  I missed the chance to help lead worship today, sorry for leaving you guys at the spur of the moment like that.  I missed the annual chili cook-off after church.  I missed being in church most of all.  I ended up spending my entire morning up until around 2 I think, in bed asleep.  My mother-in-law came over this morning, and I woke up for maybe 20 minutes tops and had to go back to sleep.  While I was asleep apparently she did some cleaning, and for that I’m so grateful for that.  I’ve only been awake for about 4 1/2 hours and I’m already tired again.  I’ve got the residual headache that happened last time this happened too.  But I’m thankful for some things.  I can still walk.  I can still talk, albeit I do have a slur.   But I am walking and I’m not sitting in an E.R. with rude Dr.’s who can not admit they don’t know what’s going on, giving me diagnosis’ that make no sense when you get down to it.  I’m not dealing with Dr.’s and nurses who when they don’t know what to say are rude and mean.  No, I’m sitting at home, reclined, watching America’s Funniest Home Videos, and writing my blog, all while enjoying the company of my family.  I know what’s going on this time around, and I’m not nearly as scared as I was the last time around.  I know what happened, and I know that the only thing I can do is give it time, be patient, and pray.  Yes, I’m frustrated and yes, I hate these stupid diseases that wreak havoc in my life. But I have so much to be thankful for that today, I am choosing not to cry over the things I have no control over.  Today I’m choosing to be thankful for the things I have control over and the things that make my life worth living.  I’m thankful for my family. I’m thankful for the love we have together. I’m thankful for the life we have together.  And I’m thankful for the faith in God that we all share together.  After all, at the end of the day, it’s these things that get me through the night to another tomorrow!

Friday, November 13, 2009

…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!

Monday, November 9, 2009

Crossroads…

I’m not really sure what to type up for this blog.  I’ve struggled for the last week or so trying to think of something good and uplifting to say.  But in truth, the last week or so has been a hard one for me.  Not so much physically, although that does play a part in how I feel, but there have been so many other struggles that I’m trying to work through emotionally or whatever you may call it.  It’s like being at a crossroads.  You don’t have a map.  You don’t have a cell phone.  You don’t have GPS. You don’t even have a compass.  You are at a crossroads that you’ve never faced before and left, right, or straight will determine where you end up.  So I’m here. Looking at these 3 different directions praying that the right road is taken.  You see I know where I want to be and how I want my life to be.  I know that I want to look at my life, and say, “There is nothing missing, it’s complete.”   But deep inside I feel that something is missing.  Some spark, some something.  I’m happy spiritually and I love my family.  I guess it’s just that somewhere along the last  10 years things within me have changed. They’ve had to change more recently due to my medical issues.  My likes my dislikes. My can-do’s and cannot-do’s.  So much has changed, that I’m not sure if I really know myself anymore.  So I’m at a crossroads trying to evaluate things.  Trying to move past the things I’ve lost, like my ability to just go out and do things alone like fishing and hiking along a creek to find just the right spot.  Those are the types of things I miss so much.  Finding a quiet spot, just hearing nature and the water and feeling the excitement as I reel one in, and also being glad that no one is there to see my frustration when I realize that it’s in fact just a huge stick or boot on the end of the line that I’ve been fighting! lol  I guess I miss the independent part of myself.  I am scared to drive because the migraines are totally messing up my vision without warning.  I am scared to take a chance and go off fishing by myself, because if my body decides to do like it did Saturday morning and I black-out without much warning, I’ll be alone, and what if I hit my head or something when I went down.  Life has just gotten so complicated and in all of the questions that my health has thrown at me, I feel lost.  Who am I?  What can I learn to like that my health won’t keep me from doing, and I’ll still have just as much enjoyment as sitting beside a creek alone?  What is there out there for me?  Now don’t read all this and say, wow she has a crummy life!  I don’t.  I love my family, and my children are my greatest joy.  I love singing and participating in the worship ministry.  I have my online fun and games and things like facebook that keep me company when I’m un-able to get up and about.  But every person needs that something that is just their’s and their’s alone.  All the things that were “just mine” I either can’t do or I’m too afraid of being alone and passing out  or losing my vision due to the migraines endangering myself or even others.  So I’m at a crossroads I guess you could say.  One of these roads will take me to something that can “just be my thing” again.  Something that will fill the empty spot that losing the ability to do the things I loved left.  So here I am just trying to figure out which way to go.  How do you do that?  How do you find something to replace something lost that you’ve loved your entire life?  I thought that when I could walk and talk again, that I could just pick back up and be right where I left off.  But the stupid dysautonomia has caused so many changes, and new challenges, that it hasn’t been possible to do so yet.  So how does a girl who loves nature, and fishing, and getting out in the woods alone with nature manage to find something to replace that void?  I haven’t figured it out yet, and I’m still standing here looking left, right, and straight… trying to figure out which way to go.  Which road has something I can do on my own, and truly enjoy and love it as much as I love the things I’ve lost?  Time will only tell I suppose.  Until next time my friends, have a wonderful day and never take one minute of time for granted!

Saturday, October 24, 2009

BEFORE all else fails, read the instructions!!!

I was reminiscing today about a time way back in the fifth grade.  It was Mr. Tanner’s science class and we were going to launch our very own rockets.  I was excited about mine.  It wasn’t fancy… just a simple rocket.  The Wizard.  I can’t remember what color I painted it or anything, though.  What I do remember is the day we were building them in the classroom and the day we launched them.  I remember not really wanting to read the instructions because they didn’t really make sense to me and I was already way behind the other students.  They were mostly all showing off their finished product and I was still trying to figure mine out.  So I turned to a very busy Mr. Tanner and asked, “What do I do next?”  He asked me something, or at least I thought he was asking me something, I answered, and he replied “Stuff it.  Put the stuffing in.”  So I did that.  I put the stuffing in.  I remember it looking something like maybe cottony stuff.  I did the rest of the steps, and finally within a few minutes I looked proudly at my finished rocket.  I just knew that it was going to go so high we’d lose sight of it until it parachuted down!  I was ready for launch day!
Launch day came and one by one students placed their rockets on the launch pad.  One by one we watched as rockets whizzed off of the launch pad, way up as if reaching the clouds, and then the parachute would launch and they’d gracefully float back down to earth.  We’d all run to get the launched rocket smelling like gun-powder and excitement!  Then it came my turn.  I placed my rocket on the launch pad.  We all stepped back and excitement grew within me.  This was the rocket that was going to reach the greatest heights! I just knew it.  Countdown started… 10… 9… 8… 7… 6… 5… we’re getting close!  4… 3… 2… 1… BLASTOFF!!!   Unfortunately my rocket barely made it 10 feet, maybe, off the ground and it blew up!  The entire tail end of my rocket was no more!  My teacher looked at me and asked what I did, and I told him how I’d packed it and then placed the rest of the parts in.  He asked me why on earth I packed it first.  And I replied because you told me to!  Apparently my teacher had been so busy that day that maybe he hadn’t heard me at all!  Maybe he hadn’t understood my question!  But whatever the case, not following the directions and listening to a teacher with his own situations left me with a rocket comprised of only the tip and part of the word Wizard.  My rocket was so unrecognizable that I ended up taking my picture with someone else’s rocket while mine lay in many pieces scattered on the ground.
I know that this has no personal meaning to you.  After all it wasn’t your rocket! BUT! If we look at the rocket in a different aspect.  A different light can shed a whole new meaning!  Imagine that I am you.  My rocket is your moral dilemma, problem, or current mountain you are trying to navigate your way up.  Imagine my teacher as your many friends, family, and spiritual leaders in your life.  Imagine those rocket instructions as the Bible.  And finally imagine all the students who had already assembled their rockets, laughing and showing them to one another, as your peers in life. Those people who live and exist all around you who according to their “rockets” they’ve gotten it all together and perhaps you’re left standing their holding pieces of your “rocket” trying to figure out how to put it together.
This is the way God used my rocket story for myself.  Like I said in my last blog, God is telling me that He’s still teaching me.  This time He is using my own past to teach me a lesson.  Had I not turned to my teacher and asked what next, and had I not given up on the instructions written to build and complete a successful rocket, then perhaps my rocket would have reached wonderful heights and glided down by parachute to a safe and peaceful landing.  Life is much like this when you think about it.  When we face a brick wall in life, or maybe can’t figure out the way around or through a situation, what do we oftentimes do?  We turn to a friend, a family member, or perhaps someone in our church.  As a 5th grader I thought that my teacher should have the answers no matter what!  After all, he’d built many rockets before!  Sometimes in life we see others living and we think, I bet they would know how to help me!  We see their external beings, but not the inward chaos that might just be lurking under the surface!  They could be like my teacher who was, in hindsight, very distracted with his own situation… lots and lots of 5th graders vying for his attention.  So when I asked him my question it just kind of blended in with all the other problems he was trying to solve.  He was the teacher, but at the moment he had more on his plate than I realized!  His answer to my question blew up my rocket!  His answer caused me to derail from the instructions because I figured he’d done this many times, and I trusted him.  I didn’t read the instructions, trusted another source, and my rocket blew up into many many pieces.  Was it his fault?  Absolutely not! After all, like I said I am the one who deviated from the instructions!!!
Have you ever asked someone for guidance and not looked into the scriptures, or the instructions?  Or maybe sometimes we need to just turn to the author of the instructions!  Yes, sometimes God does lead us to people, but I am learning that the whole hindsight is 20/20 saying is so very accurate.  I’ve re-examined my past.  I’ve too often turned to friend, family, and even church leaders for answers to problems and questions that I should never have turned to them for.  I should have read the instructions!!!  I should have turned to the author of the instructions!!!  Had I done this, there would be less rocket fragments in my past, and more peaceful landings!  We need to get back to the instructions!  The Bible!  We need to get back to the author, God!!!
There is a saying:  When all else fails, read the instructions.  I think this should be changed to this:  BEFORE all else fails, read the instructions! 

Wednesday, October 21, 2009

…teach me thy paths. Lead me in thy truth, and teach me…

Tonight is the last night of revival, well officially.  I personally feel that revival doesn’t end when the evangelist leaves.  If it’s a true revival then it continues on in the hearts and spirits of the people long after the official dates have ended! 
I know that this week has opened my eyes to some things.  I know that in the past I was content on being “near” to the Father.  I’ve learned this week that being “near” is not enough!  We should strive to be “next” to our Father!  When you are “near” someone you are close enough to see them, but not always feel them.  When you are “next” to someone you can feel them, touch them, and even hear their heartbeat if you get close enough.  That is where I am desiring to be.  NEXT to my heavenly Father.  I want to be so close I can hear His heartbeat as I lay upon His chest.  In the Bible when Jesus called the little children up to Him, He didn’t just sit them on the ground near Him, but He lifted them up onto His lap and held them close to His heart.  The Bible says that we must come to Him as a child!  We must allow Him to pull us up onto His lap to be “next” to Him!!!  Thanks to Bro. Mike Willingham’s message on this during our revival.  His illustrative and explanatory preaching was wonderful in conveying this to me! 
Since my illness worsened back in the spring and early summer months, I have learned valuable lessons.  God has constantly and daily been teaching me that without Him I am truly powerless.  My body has failed me numerous times during the last several months, but my God never has.  In fact He has proven to me more and more that He never will!  I have been thinking and wondering why on Sunday night I could feel God changing my leg and my voice, but with my heart and other problems, I felt the same.  I could feel an actual change taking place in my leg. I could feel it growing stronger and as joy rose within me and laughter bubbled out I could feel that my voice was also different somehow!  Yet, my autonomic problems still felt the same.  So I’ve had several days to ponder this, to pray on this, to converse with God on this.  And in my spirit, in my heart, I feel God speaking to me… “There is more I must teach you.”  I know I’ve learned a huge lesson during the time I was immobile due to my leg, and I was incapable of voicing anything due to my speech.  I learned to finally turn to scripture for my comfort and answers.  In all of my life, during every trial I’ve faced, I have had one constant thing.  I’ve turned to man first.  I turn to friends, family, anyone who might say something, anything, to help my situation.  During this time I had no voice to turn to anyone.  All I had was my computer and online bible that I used to search the scriptures.  I did that.  Each day I would need someone to help me, I closed my eyes and asked, “Lord, show me what I need.”  I would then type in the search box the word I felt God was speaking to me, press enter, and up would pop a list of scriptures.  I would then read each one, and there would always be the one when God would say “stop.  Re-read.”  It would be the exact word I would need to make it another day or to answer a question I might have had.  For the first time, I’d been forced to learn to turn entirely and only to God for my help.  This has opened up a whole new world for me!  I’m able to speak clearly and plainly now, but I still first turn to scriptures and to talking with God before and if I even talk to another human!  I can tell you that God’s answers have been 100% better than any answer man has ever offered! 
So I’ve questioned God, why not the dysautonomia?  Why is this still an issue?  And I still feel Him speaking to me.   “There is more I must teach you.”  I have several thoughts and feelings on this.  Maybe I’m one of those people who need daily reminders on where to look for my strength… well the correct place to turn to anyway.  Or maybe I’m still learning to lean upon God fully and wholly.  Or maybe there is a whole other world of things God has in store to teach me thru this disease!  All I know is that each and every day I awake and I’m able to get a shower, dress, and get going with ease… it’s not my body that’s doing it… It’s my God!  My body should not be able to stand on a church stage and sing for hours with all that is within me!  But I can!  My Body should not be able to withstand a full day of getting dressed, worship practice, helping in worship, helping in altar service, but I can!!!   And I know that each time I have these days, each time I wake up and jump out of bed and get going like a normal person, it is not my body that is doing it because dysautonomia does not allow for normality!  Dysautonomia does not allow me to jump straight out of bed, stand in a shower and a hot shower at that, get dressed, do things around the house, go to worship practice, attend a full service while singing with all that is within me, and still get home and get my kids dressed and ready for bed.  No dysautonomia does not allow this.  So each day I do these things, I’m reminded over and over how GREAT my God is!!! I’m reminded that without God, this would not be possible!  So maybe this dysautonomia is here just for a while longer, maybe it’s here to stay.  Whatever God chooses, I’m perfectly fine with!  For I know that as long as I keep clinging to the things God is teaching me throughout all of this, then He will keep supplying my needs and the strength that my body does not supply!  So hen God says, “There is more I must teach you.” I believe that He will do just that.  I’m ready to learn!!! 
So when you face a battle in life, don’t ask, “Why me?  Why is this happening to me? or say Why do I never get a break?”  This is what I thought at first.  I was so upset because I felt that my life as I knew it was over! And thankfully it was!  Because my contentment to be near my Savior had begun to change and I hadn’t even begun to realize it yet!  So next time when you face a battle, ask God, “What do you want to teach me?”  Because I’ve learned in all battles there is a lesson to be learned!  Don’t miss out on being taught by the most loving and wonderful teacher you can ever know!
So my prayer will continue to be this…  “Shew my thy ways, O LORD; teach me thy paths. Lead me in thy truth, and teach me:  for thou (art) the God of my salvation; on thee do I wait all the day.  Psalm 25:4-5
**NOTE: I think I may not have gotten the near and next thing exactly right. It may have been near and close, but I hope you get the idea! :)

Tuesday, October 20, 2009

Jesus turned and saw her. "Take heart, daughter," he said, "your faith has healed you." And the woman was healed from that moment.

Jesus turned and saw her. "Take heart, daughter," he said, "your faith has healed you." And the woman was healed from that moment.   Matthew 9:22 NIV
This scripture holds significant importance to me now.  As you all know from reading my blog, I have a disease called dysautonomia.  This combined with a silent migraine caused stroke symptoms just over 7 weeks ago.  I was not able to speak at first and my left leg did not work at all.  I slowly made progress and the neurologist said that I should make a full recovery, in time.  So 7 weeks in, and I’m finally singing again having regained my speech.  Seven weeks in, though, I am still using a cane to walk, and I had a horrible limp.  But to me this was progress!!! I was excited! I was thrilled to be mobile again! I was ecstatic that I was singing again and speaking plainly and normal!  Life, to me, was great!  I was learning to live with my situation.  I was learning to take life by the reigns, so to speak, and enjoy the ride no matter how bumpy it was!  I was living the life I’d been given, to the fullest extent of my abilities, and thanking God for His blessings upon me so far.
All of this changed for me just 3 short days ago.  It was Sunday morning, October 18, 2009.  I woke up and dressed for church just like I had every Sunday for the last 8 Sundays since my medical issues had arisen.  As I left the house I grabbed my purse, my 3 bottles of water, and my walking cane.  I arrived at church with great anticipation of the mornings service! We were beginning our revival!  The first one in quite a while, and I was also going to be able to sing in the worship service!  It would be the first Sunday I would sing with 100% clarity in my voice!  So I was excited!  Sunday morning’s service was amazing! God did great and wonderful things!  His spirit moved mightily and I left church that morning desiring for the afternoon’s service to arrive quickly!  I just couldn’t wait for worship practice and service to begin!
Four o’clock arrived and worship practice began.  We prepared our songs and prayed for the service.  I refilled my water bottles again, gotta stay hydrated and keep that blood pressure up!  And then the night’s service began.  The second service of our revival!  I was excited!  Worship service was awesome, and then Bro. Willingham preached a great message!  And then Darryl, our worship leader, headed to the keyboard to prep for altar service.  The rest of the musicians followed and I grabbed my cane and kept my husband near me because at this point in the service, I wasn’t feeling great.  My leg had grown weak, my heart rate was still up from singing during the worship service and I just plain felt bad.  But I didn’t let not being able to walk keep me from being in church, and I wouldn’t let this keep me from singing!  I made it to the stage, sat on my stool, got my microphone and water bottle and we began singing.  Altar service once again was amazing!  God was doing a great work among His children, and the place was “a rockin'” *smile* to put it mildly!  We were singing Look what the Lord has done, and Bro. Willingham came up and laid hands on me and prayed for me.  Before I knew it I was standing arms stretched toward heaven praising my God!  You know they say you give to God and He will respond, and respond He did!  God’s spirit slayed me out, and I could feel a change!  I felt a joy wash over me!  When I got up I began walking!  Walking and praising my King!  Now for those of you who weren’t there, my cane was still where I placed it once I sat down on my stool to sing!  I was walking!!!  I was walking without a cane! I was walking without a limp! I was walking without someone’s arm to lean on!  God had healed my leg!!!  I worshipped and walked in praise to God until the service ended!  I gave my testimony and it was simple but to the point.  I simply said, “I’m here and that’s (my cane) there! and I pointed to the stage. 
After service my Big Daddy (Eric's grandfather but I claim him as I truly feel that he’s as close to a grandfather as I’ve ever had) told Dianne (Eric's aunt) to “Go get that walker, she won’t be needing it anymore.”  So I walked into church that night with a horrible limp, using a cane.  But God’s healing graces reached my leg, and I walked out on my own with a strength in my leg I’d not felt in 7 weeks!  I don’t know about my dysautonomia.  I know that God can heal it, maybe it’s just not the right time for that yet or maybe I’m meant to live with it to keep me close to what’s important, my faith in God.  Who knows.  But I know one thing.  My God is a God of healing!  My faith in him is stronger than it ever was, and whatever the outcome with my dysautonomia, I’ll always remember the feeling I had in my body as God was healing my leg!  I will always remember how I felt as I stood and walked!  I posted on my face book status the next day of how God had healed me and how I walked in with a cane, and how I’d walked out without it!  And the old song, I’m walking on sunshine, oh oh… and don’t it feel good! popped into my head, and it hit me.  I was walking on SONshine!!!  So I can sing I’m walking on SONshine, oh oh, and don’t it feel good!!! :) 
So like the woman in the Bible that Jesus turned to and healed.  I have had faith in my Savior, and this faith has made me whole!  And my leg was healed from that moment!!!
Jesus turned and saw her. "Take heart, daughter," he said, "your faith has healed you." And the woman was healed from that moment. Matthew 9:22 NIV

Thursday, October 15, 2009

Chaotic cleaning!!!

Today has been a venture of practicing patience.  Eric and I are attempting to finally get boxes that have been stacked along a wall in our room to storage.  We need the space for the home school table since I now have my exer-bike in the living room and need the home school space for the bike.  Yesterday we took at least 10 boxes, mostly toys, to storage.  I know that it is crazy to have that many toys, but we’re pack-rats and the girls Granna bought a lot of toys in the past!  So it seems a waste to throw out things that our youngest daughter can now play with.
Anyway I got our closet cleaned out, so that now all of Eric’s guitar gear is on his side of the closet instead of all in my way.  I folded and arranged all the clothes on the top shelf neatly even though I know that it will not stay that neat.  We also have the van loaded with more boxes, mostly clothes this time, ready to take to storage.  I did manage to find some of my oldest daughter’s clothes from the past for my youngest to use this fall and winter season.  I love it that I don’t have to buy a lot of things again! 
Eric is now in our room cleaning up the “disaster area”.  This is the area where everything that does not yet have a home got thrown in the middle of the room.  He is not a happy camper!  He says that I always begin large projects but I never am able to finish them.  And I’ll admit that this is true!  But in my defense I only begin the big projects as a last resort of asking for months to get them done!  And I was proud of myself for lasting as long as I did today.  I only got light headed at the end of cleaning out the closet, and managed to sit and go through several boxes and bags of clothing to see what I could find for the girls to start the fall season out in. 
So today has been a hectic day.  I’ve been informed that my process of doing things does not mesh with Eric’s process of doing things!  I already knew that but somehow as always I begin a project thinking that somehow maybe our processes and ways of doing things will merge into one magnificent way of doing something and we’ll accomplish getting a lot done!  But, yet again this did not happen… *smile*  On another thought, though, my process did get all the clothes sorted and the closet cleaned!  I’m still waiting to see if Eric can pull it together so I can see what his way of doing things will accomplish! I have a feeling that tomorrow evening I will be showing off my new hair cut, but only to the 4 walls of my bedroom as I finish things up! (I’m finally getting to the salon for a haircut…YAY!!!)
I do feel bad, because Eric is exhausted, but he is telling me that I’m not good help.  Apparently my mind wanders from project to project!  So he’s kicked me out of the room and told me “No offence, but when you are helping, nothing gets done!”  So I have sat down, and written all this down as a reference for use in the future of how my project process and Eric’s project process are apparently from opposite planets!  Maybe the next time I see something that I want to get done, I should let him lead?  But maybe not, because after all, I am a woman, and I’ll always want my projects done the way I see them in my mind!  Even though I am a chaotic cleaner!

Sunday, October 11, 2009

for when I am weak, then am I strong.

2 Corinthians 12:9-10 - And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.


This scripture pretty much sums it all up.  It has been 6 weeks and 2 days since the onset of my latest symptoms.  Some have told me that they wish they had the strength that I have.  That they could not have faced the circumstances I have faced and stayed positive and kept their faith.  Those type of statements puzzle me.  For starters I don't see myself as strong, well not without keeping my faith in God.  I have had 6 weeks and 2 days of pretty much keeping silent.  For those who have not read my blog, 6 weeks and 2 days ago I could not speak due to what neurologist say were the symptoms of a silent migraine combined with my dysautonomia.  I lost the use of my left leg 6 weeks and 1 day ago.  It has been probably the longest 6 weeks of my life, or so it has felt.  Today was the second Sunday I was able to get up on stage with our worship team.  Today was the first day in 6 weeks and 2 days that I was able to sing with a solid, non slurring voice to my Savior!  So I was sitting there singing "I feel Jesus, I feel Jesus, I feel Jesus in this place.  And my soul does, burn within me! For I feel Jesus, In this place."  And it occured to me that 6 weeks and 2 days ago I could not even say the name of Jesus aloud!  I've been thinking on this all day, rejoicing that today I could sing to my Savior again!  And also thinking about those questions of how I have handled this last 6 weeks so well.  So this blog is going to be dedicated specifically to that answer!
  As I said in church today, that 6 weeks ago I couldn't even say the name of Jesus.  All my life I've been taught that when trouble arises and you can't handle it, just say the name of Jesus!  All my life I've been told that when all else fails, call on Jesus.  I even teach my children this!  When they have a scary dream or they get worried about something we pray and call on Jesus! We sing Jesus loves me, to remind them that He loves them and when they feel weak that He is strong!  So from the time of my birth up until now, this has been something I was taught and have continued to teach my children!  But like I said, 6 weeks ago I couldn't say anything, and I couldn't call on Jesus!  And I know that He hears my heart and knows my thoughts, but there is nothing as soothing as calling on Jesus and feeling His presence cascade around you like a comforting blanket of love!
  So what did I do?  I couldn't do what I'd been taught, although my spirit was crying out daily, hourly, for Jesus.  Well my first step was I went to where I knew that there were those who would cry out the name of Jesus for me!  I was in the emergency room on Friday night, August 28, 2009 not able to speak with left side muscle weakness. Saturday, August 29, 2009 my leg quit working and I lost all control of it.  But on Sunday morning, August 30, 2009, I woke early.  I drug myself to the shower and took the first sit down shower of my life.  I got dressed with the help of my family.  And then I drug my leg into that church leaning on my husband and my dad.  I knew where I needed to be!  I knew I needed to go where others could call out the name of Jesus on my behalf!  I craved to be in the spirit of my Lord!  It wasn't easy.  The important things in life never are, but the rewards outweigh the pain and struggle!
  Each day since that Sunday I've faced struggles.  Each day I searched the scriptures for a word from the Lord that would give me strength for yet another day!  And each day God would lead me to the right words.  I am admittedly one of those who has been raised in the church, yet I've never read the Bible in it's entirety from cover to cover.  I struggle to understand the scriptures. I struggle to remember what I've read, and often quit reading due to becoming frustrated from reading it over and over and still not grasping it.  But in the last 6 weeks, I haven't sat and read chapters upon chapters, and I haven't read it cover to cover yet, but I've read scriptures and God's shown me that if I let Him lead me in my reading then He'll provide the understanding!
  There have been countless scriptures that I've found, most of which I have posted to my facebook because I'm so excited in my spirit what God's led me too!  Each day there would be a scripture that God would show me and remind me where to look to for my strength to go yet another day!  God used people to share their stories of faith and how they overcame trials with me.  Each day I saw over and over how very near my God was to me.  And how very comforting that cloak of love he had for me was!  Each Sunday I've gotten up and gotten dressed.  It's not been easy. In fact my routines these days are much different than they were 7 weeks ago when I last went to church before this happened.  Getting to church or anywhere for that matter is difficult and tiring these days, but it's where I desire to be!  That has been the desire of my heart, to be with God and with friends in the House of God, and God has given me the desires of my heart!
  So when people ask me how I've remained strong and kept my faith and not crumbled under the load of all of this, it does cause me to stop and wonder how could I not have kept my faith?  How could I not trust my creator?  He gave me life!  He fashioned this body and placed every part of it just where it needed to be, so how can I not trust Him with it now?  I was speaking with someone recently about faith and they spoke of how they struggled to keep their faith.  I told them that we've always been told "Have faith as small as a grain of mustard seed" but I've never been told to allow God to cultivate and grow that seed!  But isn't that what we must do?  If we just have a seed, then we have a seed!  But if we let that seed become planted in our hearts, in the foundation of our spirit, and let God water and care for it. That's when things start to happen!  The seed sprouts and grows and becomes much larger and grounded!  But if we just hold onto that seed ourselves, we're just stuck with a seed!  I gave God my seed during these last 6 weeks, and I've been able to watch my faith in Him grow a little more each day!  
  God's not a God that will leave you when the going gets tough!  He's given us all that we need to face hard times, we just have to dig a little deeper in His words and promises sometimes!  We just have to be able to hand Him our seeds!  This is where I've been able to keep my strength and face each day, because I've given it to God!  As humans we sometimes think that it's our problems and we should shoulder them.  We end up sitting at home with a bum leg and no voice, instead of in God's house, just as an example.  We end up sitting there and sitting there, and pretty soon we're whining to God about how miserable we are. We sit there some more and then anger sets in and before we know it we're so far from God because we've decided to carry our burden, keep our seeds, and do it ourselves!  I knew this wasn't what I wanted!  So I got up off my couch, gave God my teeny tiny little seed, told God I needed His strength to get to His house, and I went!  This is how I've been able to last 6 weeks and 2 days of not being able to call on His name!  I did this week after week, letting others say His name for me during prayer and I called out to Him in my heart.  But today...  today I sang out to Him with my heart full of a deeper love than I had 6 weeks and 2 days ago, because I gave God my seed. I gave God my problem and I removed my 2 cents worth from the story and let Him write it.  And today I was able to yet again testify of how doing this, has given me my voice back, getting me my leg back, and getting me towards a tomorrow that will be closer to Him than today!
  So I rejoice and glory in my infirmities, because I know that the power of Christ may rest upon me!  FOR WHEN I AM WEAK, then THRU HIM I AM STRONG!!!


2 Corinthians 12:9-10 - And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.

Monday, October 5, 2009

things that make my life WONDERFUL!!!

  This weekend was an eventful one. On Saturday we had the fall fest at church.  I think they gave away over 300 hot dogs to the community, not counting snacks and sodas!  There were a lot of yard sales from people in the church and the community. The childrens department had 3 of those giant inflated fun houses.  They had a table set up for painting miniature pumpkins, and over 100 of those were painted by children! Add face painting to that and you can see that the children had a blast!  There was also live music.
  So my mother in law in my girls and I all went together.  It wasn't too hot in the beginning, so I was able to wobble around some and check out the childrens clothing with my mother in law.  I watched my oldest daughter having a blast on the giant inflated slide, and she was loving it!  I listened to the men yelling out and cheering their Alabama football on.... I personally dislike Alabama, I'm more of an UGA girl!  It was a lot of fun just getting out of the house and spending part of my Saturday at church with friends!
  Afterwards Anita (my mother in law), the girls, and I went to Wal-Mart.  She checked for an electric scooter for me because I'd already done too much at the church and almost passed out, but for the first time Wal-Mart didn't have one available!  So we ended up with this HUGE wheelchair with the buggy that swings out in front.  Well that part was broken and they had it tied with a Wal-Mart bag!  Well that didn't seem like it was going to work, and surprise surprise, the whole buggy would swing open while Anita was pushing me!  Let me tell you we looked a hot mess!!! But what was hilarious is every time we stopped, Serena (my 5 year old) would run into Anita with the buggy!  Finally we dumped the buggy and discarded almost everything that we had planned on buying due to the fact that it was just too hard to get it all done, hold the wheelchair together, and keep up with Serena!  We did manage to get some dessert foods and my exer-bike!  We were planning on getting a bucket of chicken instead of cooking for supper, and since we were exhausted we were just going to send the guys back into town for it.  But yet again, when we pulled into the yard our plans would change!  It's a good thing we didn't buy the bucket of chicken because my husband had already went home! Now Anita had to drive me home instead of getting out and getting comfy as planned!!! Poor Anita... *smile*
  Anyway I got my exer-bike together while watching the UGA game, and with 2 minutes to go I just knew we were gonna win, but some stupid ref calls (on both teams) totally changed the game and I was left with a disgusting memory of how we lost to LSU with 2 minutes left! So I rode off the frustration on my brand new exer-bike!  It's wonderful and I just know I am going to enjoy using it on my road to recovery and beyond!
  Sunday was yet another day wracked with activity.  I rode my bike 5 miles while I fixed my hair for church!  And today was a special day for me because I sang with the worship team again!  Granted there is a lot of therapy that still needs to be done before I'm 100%, but man was it great to be back up there!  I gave my testimony of what my neurologist said (read the blog before this one) and it felt so great to be able to speak!  Of course there were a few slurred words, and of course I had trouble getting some of the words out, but man it felt so great to just share what God has done!!!  I'm hoping that with continued therapy on my singing this week, that next week I'll be 100%.  That's my goal every week.   I use Sunday's as a timeline/deadline because everything I look forward to doing is usually on a Sunday!  So my goal for this week is to get my leg stronger and either rely on the walker less or simply not need it at all, that would be nice!  With my voice my goal is to speak and sing 100% normal by Sunday.  I make this my goal every week.  If I don't get to 100%, then I will be closer, and the next week is just an easier goal to work towards!!!
  After church we did our usual and went to Anita's, and ate lunch.  Now Anita is not the typical American grandmother, so there is never a huge spread of food ready, but she's a barrel of laughs and it's always a fun time.  So we had fast food burgers for lunch, and then just sat around talking until it was time for Eric and I to go to worship practice.  I realized during practice that my throat began to feel fatigued, but as stubborn as I am, I didn't listen to my body... By the time I left I knew I should go straight home and rest, but I went back to Anita's sat around laughing and talking and using more energy I knew I didn't have, but yet again it is so nice to get out of the house!!!  By the time I got home I was exhausted but my stubborn self walks in the door, changes into comfy clothes, and what do I do? I climb on the bike, press the button for an uphill downhill exercise, and did another 6.1 miles and 30 minutes!  And I'm paying for it today!  My body aches, my throat aches, and I'm still tired even though I slept like a rock thanks to the new meds Dr. Phillips has me on!  So today, I have no choice but to "listen" to my body... because it has decided that every movement I make is going to hurt!
  So this was my weekend.  To some it isn't a barrel of fun, but to me it was wonderful!  Every day that you have your mind to make clear decisions is wonderful. Every day that you are able to spend time in the presence of God with friends and family is wonderful! Every day that I'm getting better is wonderful!!!  I give praise to my Lord and my Savior for each of these things that make my life WONDERFUL!!!

Thursday, October 1, 2009

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!

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!  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!

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 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*