Saturday, August 14, 2010

Kiah… our newest addition

Well some know that we are indeed moving, and we’ll have a good front yard to fence in. So we are getting a puppy just like we promised the girls for all these years. Her name will be Kiah, pronouced kEYE-yuh, and it means from the beautiful place. She’s a beautiful dog, and the farm we went to look at her was a huge place full of beauty all around, so it’s a fitting name. She’s a blue heeler or Australian Cattle Dog. She has a black docked tail (unless she was the one that was naturally born bobbed, not sure yet) and black ears. She’s a beautiful shade of blue, and evenly placed fur so that it’s not mottled. I wish I had taken a picture of her, but I forgot! We are going to go and pick her up on the 28th. We can hardly wait! Once we do though you can bet there’ll be pictures! The picture below is a pup from the same mom last year. Trust me, Kiah is more beautiful than this fella! lol
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Moving is a thrilling pain…

Some may already know that we are in the process of buying our own place. I knew that the packing was going to be a huge pain due to the dys keeping  my  packing progress slower.  I knew that getting the apartment clean after leaving and up to standards of a landlord check would also be a difficult process.  But I never imagined that something as simple as calling to set up phone and internet service transfer would turn into some huge ordeal.  First I had to stay on the phone with one person, repeat all the stuff like name, phone number, last four digits of my social security number (not feeling so secure about that anymore, maybe they should rename it?), and then the task of explaining why I was calling, giving the move out and move in dates as well as the new address.  Well I sure wish that the lady would have told me before I recited all of that to her that she was not qualified to help!  Same with the next person she transferred me to and the next. Finally I got a guy who was qualified, or so I thought.  Now he was the right department that I should be speaking with, but I’m not sure he had it all together in his “department up stairs!”!  We went through the whole process off me giving all that information again, I got put on hold, then answered some more questions, hold again, and finally he was done.  I just didn't’ know how “done” he was!  I once again confirm the dates to switch and everything seemed in order. Then I hung up the phone and tried to go about my business and getting my power transferred.  I keep getting the “No Connection available” screen no matter what page I try and pull up. I  think no big deal, I’ll just reboot! And I did, still no connection. So after worrying with it for about 15 minutes I decided to give AT&T a call to inquire why my internet is not working. All the lights are green which should mean it’s  all ready to go!  To my surprise, when I pick up the phone there is NO DIAL TONE! In the process of arranging my cut off and move dates for all that time, my luck would have it that the guy I get is a complete dolt more intent on selling me a cell phone plan than actually getting my service right!  I’m certainly not buying one from him now, and about that survey mister… yeah you probably shouldn’t have that emailed to me!
Anyway, I get the cell phone (not sure how many minutes it has because it’s a pay as you go) and I call them back. Talk to the lady who seemed nice enough but in the end I realized she didn’t care much either because she said and I quote “ It’ll be on some time or another, Have a good day!”  And then she hung up.  So I called back about an hour later and got another lady who basically tried a little more to help, but still when she tried to connect me to someone else, they hung up on me!  So I called back, finally got someone who tried and within the next 15 minutes I had my phone service back. I had to tell them that I had a disease and at any given moment I could black out and go unconscious and my kids depend on the phone to call for help.   Also told them that my husband was about to leave for work and we’d be here without a line out to call for emergency.  Maybe that is what got the job done or maybe it was me calling ever 15 minutes with a crummy pay-as-you-go phone!
So I thought, my internet should be back too!  Finally the kids will have something to keep them occupied while I pack!!! WORNG!  I call them back, ask about the internet and they tell me 24-48 hours! I told the man that didn’t make sense since it only took them 1 man and 1 minute to turn it off and screw it up!  So he did some number punching or whatever or maybe he was just telling me this to get me to leave him alone, but he said it should be back on tonight.  So here I am 2 hours later typing the blog on live writer because I can’t upload it to the internet or type it on the internet, but I can at least complain, save, and upload later.  I need to transfer my power but I'm a little hesitant to do that now! And mercy, when I have to transfer my mail… I don’t what to even think about it!
UPDATE! Even now, I’m at my mother in law’s using her internet. AT & T, you stink!3 days later and still my phone and internet is messed up from something YOU caused!

Tuesday, August 3, 2010

My flesh and my heart faileth...

Today I just wanted to blog an encouragement to all of my fellow Dys. Fighters.  There are many days when we feel alone, isolated, and up against an unshakable wall.  We wake up to find our bodies are screaming against everything within us that wants to get up and go.  We get out of bed, only to realize too late as we hit the floor that our body just will not agree with our plans for the day.
People ask me so many times, how do you do it? I'm often at a loss for words, because I don't do it. Well not without the strength of my Savior, Jesus.  Everyday is a struggle.  I've made some things easier in some ways. For instance, one hard choice to make for me was my hair.  Not in a conceited way or anything, but I've always been told I had beautiful hair. My Aunt Alley, who lost a battle to breast cancer, was one of those ones who would say to me that my hair was beautiful.  My husbands family always told me what beautiful hair I had, how rich and healthy it looked.  But now for the sake of my health in this Alabama heat, I had to make the choice to cut it. Not just a trim, but now it's as close to a boy cut as a girl can have. Do I like it? No. I miss looking in the mirror and knowing that at least something about me was beautiful. Now I look in the mirror and see ease. Not beauty but the ease that short hair has afforded me. The energy saved from not having to blowdry and style. It's just a small sacrifice. People may say, So what, big deal, you had to cut your hair. But for me it was huge. Another decision I make every day is do I chance going outside in the heat or do I stay inside and try to pass the day however I can. Well that's just an obvious decision. The heat would zap me of my energy instantly, making me sick therefore rendering me unable to care for my kids while my husband is at work. This is a hard one for me, and sometimes I go against my body and all logic within me and I go out anyway. I pay the price, for several days or more, but sometimes giving up another love - the love of the outdoors - is sometimes hard to let go.
My point in all of this is that it is oftentimes the little things we are forced to let go that hurt the most. Not being able to spend a lazy summer afternoon out playing with my beautiful daughters is so hard on me. It was the one thing I struggled with the most at first. It's been more than a year now since I've been really sick. Is it any easier to miss those days outdoors with my girls doing all the things I did with my parents outdoors? No it's not easier. But I do make an effort to find other things we can do together. It's all about finding your priority in life, and if the circumstances have changed and caused you to be unable to fulfill these priorities the way you always have, then find another means of fulfilling them! Does your child miss you playing ball outdoors, or camping outside under the stars, and other things? Play ball indoors! Break the rules! We have one of those huge bouncy balls, and we'll toss it around in the bedroom, kick it around the kitchen. If something gets broken, you won't miss it as much as you'll miss those moments with your kids!  There is always a way where there is a will.  And with Dysautonomia you can't make it without the will to fight!
My main weapon in fighting Dysautonomia is my faith in Jesus. He is my strength and my biggest fan. Why do I say that? Well I have a purpose in life. God designed me with that purpose in mind and as long as I'm striving to fulfill the purpose, God is there helping me with the strength to go on. He never fails me. Yes I have an incurable, rare, frustrating beyond belief disease. Yes I struggle to do the things I know God has called me to do. But, I know that God is my strength when I'm weak. He's my courage when I'm scared. He's my clarity when my mind is in a foggy mess. He's my best friend when I feel alone. He is my everything. There is nothing I can't do without God.
I've been told I'm so brave to do the things that I do. Referring to singing in the worship team and things like that. After all, singing uses oxygen, which we already struggle having enough of! I'm not brave, I'm faith driven. Love driven. Passion driven. I love my Savior, I love singing in worship to my Savior, and I have faith that this is what He's called me to do and He will supply the strength ,to do it. This is where the title of this blog comes in.
Psalms 73:26 says, "My flesh and my heart faileth: [but] God [is] the strength of my heart, and my portion forever.
When you feel like all the world is crashing down around you. When you feel your body is at the very least against you. Remember that verse. And then follow it up with this one.
Psalms 18:2 says, " The Lord [is] my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, [and] my high tower.

Just remember on those extra hard days, Keep your faith, hope, and trust in the Lord. God is our strength, our deliverer, and our help in times of trouble and difficulty. I truly believe this and felt that someone out there today needed to be reminded of this. I love you all, and pray for you daily that God gives you strength, comfort, and peace today. God Bless, Miranda - Fellow Dys. Fighter :)