Looking for Someone

I know that this may not be the best way to find someone, but I'm hoping that you see this and are able to contact me.  All I have is your name and location that you left in a comment asking if we could chat.The comment was as follows.  hello miranda its phera ncheke in south africa i have read your story n i want u 2 chat with me plz it realy touched me.   You can reach me at dysblog@live.com

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!

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!!!

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

Another day another trial

Technorati Tags: Migraine,Silent Migraine,Family,Faith

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!

…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!

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!