Tuesday, December 20, 2011

Not much to say, but...

Just thought I'd do a short update. It's been a couple months since I last posted. Not sure if I mentioned my youngest and her dental surgery, but we made it through that in October. Made it through Halloween and Thanksgiving. Now Christmas is upon us in just a few days.  All of the church programs are over and done with, and they were great!  Now we are looking at Christmas Eve and Day celebrations.  Especially the kids! They can hardly wait to open their gifts and enjoy all the family time! So that's what we've been up to. Short, sweet, and to the point! LOL Hopefully I will have more to update in the New Year. Health-wise, I've been okay. No severe blackouts that I can think of, just moderate problems. Nothing I can't persevere through!
Anyway, Merry Christmas and I'll see you next year! :)

Sunday, October 23, 2011

Such a busy and tiring week...

Well guys, it's Sunday the 23rd of October 2011. It has been a very long week! This leaves me very tired and cranky but at the same time very blessed.  On Wednesday morning my four year old had an extensive and complete oral surgery under general anesthesia. She had to have her four top central teeth extracted and once they were in there they found that they were also abscessed. It's strange to me that my daughter never complained with pain and was continuing to eat! Anyway, she also got ten crowns... yes TEN!  And some fillings. I know what you might be thinking... this is a kid who never had dental care, but the truth is she has had the same care as my seven year old and she only had 2 tiny cavities! It blew my mind at how much work was needed on my 4 year old. She has soft teeth, she cut all her teeth early (at 11 months she had the full set), and she drank a LOT of juice for tummy problems. All this combined left her with a mouth full of problems which she handled like a champ! So we are four days post-op and she's eating almost everything she wants. It really just blows my mind at how quickly children recuperate! But I am so blessed because everything went so smooth during her surgery. It was about 2 hours that she was back and under general anesthesia and the first day she was sleepy and had moderately mild pain. But God truly kept her in the palm of His hands! Now I'm trying to recuperate and of course it takes me much longer to regain strength!  So I'm resting and sleeping and resting. And still never feel rested! *smile*  But I'll get there... eventually!
This week I have yet another Dr. appointment for the girls. The four year old has a follow-up with her pediatrician about her new allergy meds and my seven year old has shots. Oh and both are getting their flu shots. So another week and another doctor visit. It's like we never leave those offices anymore!
On a better note we have both girls Halloween costume bought and they are looking forward to Halloween. I think their favorite part is getting all dressed up as whatever they want to be... well almost anything they want to be. I mean I've got to draw the line somewhere and I draw the line at trampy looking costumes and ghoulish costumes.  But I never really have to govern in this area to much because at this points my girls are still vying for those cute little butterfly and barbie costumes!  So the upcoming weekend will be full of cuteness ( my girls of course!) and candy and trunk or treating at church. So in between all this we are still homeschooling this week. Last week was a light week considering the surgery and all. But we have plenty of days already and plenty of time if we need it. So until next time have a less tiring week than I've had! :) God Bless!

Thursday, October 6, 2011

a lost voice is back...

Hey everyone! I've been either busy or sick and as a result my blog has been vacant of a lot of posting! But today is a pretty good day. My kids are doing their homeschool work which at the moment is a book about halloween that they are coloring and reading. This means I have a few free minutes to get a quick blog in. 
So, what's been happening around here?  I'm still hangin' in there. I did have another silent migraine episode or something on Saturday and as a result I couldn't speak for about 3 days. But thankfully things are back to normal. I still find myself having to think sometimes before I can get the words out. I know what I want to say, but I have to concentrate at times to get my mouth to get it out! Weird feeling. That should pass soon too, it usually does. I'm also having to try and "fix" my sleep schedule again. Everytime I have a bad episode I sleep for HOURS more than the average person for several days. And then I have a day or two where I can't sleep much at all. Then I have to start working myself back to sleeping a normal nights sleep. Last night I lay down and just stared at the ceiling for so long just trying to bore myself to sleep!  Finally I was able to fall asleep and slept well enough that I could get up 2 hours earlier than yesterday. So by the beginning of next week I should be back to rising around 7 and sleeping by 11. That's the goal anyway.
Some of you know that we (my husband and I) decided before children that homeschool was the way to go for us. It makes more sense now than it ever did and I'm so grateful that I'm allowed the opportunity to spend all this time with my kids. Watching them learn every day and getting to be a part of that is a blessing! Granted our homeschool routines are likely MUCH different than your average family! For starters I spend the entire lesson sitting with my feet up on the sofa. We pull a fold up table out from under the sofa and they drag over a couple kitchen chairs. I have all our supplies on the counter behind the sofa so everything is within an arms reach for me. This helps me not be as symptomatic as if I was standing or sitting with my feet hanging. This small detail is very important because the longer I stand or sit with my feet hanging the less blood flow I get to my brain which means less oxygen and that just spells disaster! But we have a system that works for us and so we use it. The girls have their responsibilities as far as who get/does what. The less physical work that I have to do, then the more clear-headed I remain. 
Anyway on a good note. I was so scared and worried going into this school year. I worried all last spring and throughout the summer. I just couldn't figure out why my oldest daughter, now 7, couldn't read yet and why she was still having trouble writing some of her alphabets correctly. I even talked to my husband and mother in law about putting her in public school because I felt as if I were failing her. After much encouragement and a lot of prayer I did some research online about kids who struggled to read and write like she does. I found a lot of answers. All under one little word... Dyslexia. We haven't had her tested because it usually isn't covered by any medical insurance because it's not considered a medical problem and it's VERY expensive. But she meets all the criteria for a dyslexic child. So I changed my method of teaching her. I let her guide me in what worked best. I never considered asking a child what would be best... after all I am the teacher! How blind we can sometimes be as adults, huh!?!  So after a couple weeks we worked out the kinks. I left the alphabet up for her so that she could look at the letters and then write what she saw. This worked well because she is great at drawing what she sees, so she would refer to the alphabet every time she came to a letter that she typically mirror imaged. Now it did take time. I still catch some of those letters mirror imaged if she's in a rush. I still have to look at her work and correct her by letting her know she mirror imaged a number or a letter, but by doing this she's began to check her own work more and compare it to the correct letter/number to see if they match. It's working out great! 
Another thing I learned about kids with dyslexia is that they may be able to read a word at one moment and in one situation but in the next not recognize it. This was SO true with my daughter! Take a word out of a sentence and she'd be lost. Take the pictures away from her reading and she had no way of guessing what those words were! So I let her guide me in how to correct the problem. Phonics don't really make sense to her. When she sounds words out, there will be sounds and letters that aren't even in the word! BUT if we cover part of the word and work one letter at a time, most of the time she can get it. Her reading has improved from reading simple words like cat, dog, etc to reading at her level! I did a reading test this past week on her and was surprised to find how much she'd improved! Very blessed to have family who supports us in our decisions and prays for us to find guidance! I know that without God guiding me I'd have never learned so much about my daughter and would not be able to teach her the way I do now! 
Let's see... other news in the Powell household.  We've had to do numerous Dr. trips. Vision for the oldest, she needed very low prescription reading glasses. Dental for both. The oldest had a couple small cavities and got sealants. The youngest, now that's a dental nightmare. She's having dental surgery the 19th of this month. Keep her in your prayers. She also had to have a pre-op appointment before the surgery and we've gotten that out of the way. Total Dr. visits in all so far? 6 I think. I might have missed one in my counting though! That's not counting my husbands dental visits! Whew, that's enough to wear a healthy person down...just ask my mother in law who has taken us to every single visit! (Thanks Ni!) 
For an extra curricular activity for the girls they chose to do the Build and Grow program at Lowe's. They go twice a month on Saturday morning and build a project. They get a certificate and a badge to sew on their Lowe's apron. It's a great project and I was surprised at the amount of kids they have going! The girls really enjoy it and we've made this our family day. They get to spend any chore money they've earned and they get to pick where we eat for lunch. So every other Saturday they have chosen Chinese food! Good thing we all like East Palace! :) Maybe next time they'll choose Mexican, Italian, or anything else kind of food... but I doubt it! 
Anyway, the oldest is finished with her book. She's colored it and then she's read it aloud to me, all on her own. Two months ago that wouldn't have been possible, so right now I'm a very proud mama!
Until next time, stay strong, fight hard, and LIVE! Life isn't worth anything if you don't live it to your best ability! Keep fighting Dys, and have an awesome day! Oh, and here's some spoons to help you through your day!

Wednesday, August 10, 2011

Homeschooling with Dysautonomia

Hey everyone. Just thought I'd do a quick update. As you all know I have Dysautonomia. Some of you know I homeschool our children and that the last couple years was VERY difficult having been diagnosed as well having a child school aged. I'll be the first to admit that school was very lax with my oldest for the last couple years, but she has just reached compulsory age anyway, so this year is actually the first she "has" to be schooled. So we are off to a great start. I don't feel great but I'm able to work with the girls and get their school time accomplished. Most everything else has had to take a back burner due to my feeling so sick afterwards, but my girls are first and the most important anyway.
Anyway, they are doing so good! I'm very proud of them. They have very different lives from children who haven't got a sick parent, but they are exceptional little girls despite or because of my illness... who can really say for sure! I do know this.... they are very compassionate and very prayer and God believing little girls because of the life we live! It's amazing watching them grow up, sometimes WAY too fast for my liking, but yet they are growing up knowing and loving God and life around them. I pray that they see that I take no moments for granted and I strive to enjoy every moment available to me... and I do believe they see this because I see it with their own little lives!
We don't have a typical structured school day. Some days we start early and are done by lunch. Some days we eat lunch and then school and are finished by mid afternoon. It just depends on what works for that day. Yet every day has it's routine. They do their chores before school and earn their points to cash in on Eric's payday for their allowance. This is something new and they are doing GREAT with it! Then we eat either breakfast or lunch, depending on the time, followed by school. And they have the rest of the day to pretty much be kids!
That doesn't mean that it is "learning-free" time though. We still do activities they learn from. Gardening is one of our favorites to do together. Working with the animals is another. Both of my girls want to be some form of animal doctor when they grow up. So I think it's important to let them learn the responsibilities of working with animals. When we are working with the garden they are learning so much that can help them in their adult lives as well as current school work with science and math. It's amazing where you can tie in school with every day living!
Anyway, that's pretty much been what's going on life wise. Health wise I am struggling with extreme nausea, headaches, heart rate fluctuations, blood pressure doing it's own thing, sleep is insanely messed up, blurry vision, all over aches, and on and on.... It seems like my body is just in a weird funk and can't pull through it. But God will grant me strength to get through each day and I'll make it! So if I look or sound funny in the meantime, just laugh WITH me about it...lol  Can't go through life without finding humor in what ails us! Until next time, God Bless and keep fighting Dys! Love you guys!

Thursday, August 4, 2011

Sleep, Sleep, Sleep

Hey everyone. Sorry for the really long delay in getting a Dys. update posted. I've just had a lot going on lately. But, here I am... finally!
So topic for today is SLEEP! I have been sleeping SO much. Just can't seem to get rested enough. I guess my body finally said, "OK! ENOUGH!!!" and now every chance it gets it sleeps.
Like I said, we've had a LOT going on. I still don't know how I made it through everything other than strength from God! Our church's had a State Convention and our church was on program to lead worship for one of the services. So we had practices for that, but I didn't make it to all of them due to not feeling well. Then my husband had dental surgery so we stayed with his mom for a few days in case he needed a ride back to the Dr. since I can't drive... not to mention he was VERY sick and I don't handle vomiting and things well...lol Then there was the state convention. Then I had a few days to rest up and my family from S. Ga drove up and stayed from Sun. through Thurs. And I've pretty much been sleeping since they left. Not always restful sleep, but sometimes sleeping so deep no one can wake me. Anywho...
Quick shout out to my mom.  Today's my mother's 50th birthday and again, I'm stuck here in B'ham AL unable to travel to be with her on her big day. I miss spending birthdays and other holidays with my family.  But I hope she has an awesome day today! My mother is the best! I love her with all my heart and can't wait for the day when they are able to move closer or something. I really miss them! It's been 9 + years now that I've been living here in Alabama and apart from my family. I love it here though and can never imagine living anywhere else. Good thing is they also love it up here and hope to move in the next few years I think. That would be awesome! Maybe then I can handle the trip well enough to visit them! Anyway, Happy Birthday to you mama.... I love you VERY much! You're the best!
Signing out until next time, Miranda

Thursday, June 16, 2011

Dysautonomia - video 3

Just realized I never blogged this video! It was video number 3 taken June 4, 2011.

Thursday, June 9, 2011

Oh Come Let Us Adore Him - Christmas 2010

Me singing at church during the Christmas Program. It's rare for me to be able to do this, especially lately and I really love singing. Hope you enjoy it.

Last Night

Last night I cried for you
My tears flowed like rivers
with no end in sight.

Last night again I mourned
Feeling helpless in the situation
Knowing that I've lost you

Last night like a ton of bricks
Your absence was smothering
The air was thick with sadness

Last night again I was reminded
Of what we once had
Of what we once did freely

Last night I was alone
The air being sucked from my lungs
A feeling of helplessness covering me

Last night you failed me again
And terror filled my very being
It's the not knowing what minutes hold that pains me

Last night the darkness enveloped me
Like a fog of loneliness
Because you left me helpless

Last night I cried for you
The life that once was
The freedom that once lived

Last night you showed me your absence
What life is like without you
That every day is scarier with your loss.

Last night I sat helpless in the shower
As the water washed away my tears
Tears shed of a body no longer well

Last night again it hit me
You are gone leaving a vulnerable shell
You, my health, are gone.

Wednesday, June 8, 2011

Dysautonomia Update 4 - Specialist Visit

Hey Corrine, I hope if you see this it will give a few answers to the comments you've left recently.
The garden is looking great. I was able to get a lot done of the space of a few months when the weather was cool enough and my daughter was a great help to me as well. We have a youtube channel. Just look for emsapowell and you can see all our vids on the garden, family, pets, and dysautonomia there. Kiah now has a new penmate, Bandit. He was my mother in laws dog and she couldn't keep him anymore and we couldn't see him go back to the shelter, so we took him! He's an awesome dog. Kiah is jealous and bothers him constantly when we are around, but when we're out of sight they are best pals...lol We have 4 cats and 4 kittens (almost 4 weeks old) and another litter on the way! I'm going to lose my mind before we get them weaned and homes found...lol Gotta get them fixed this year for sure so this doesn't happen again! We also still have the hamster, although I am wishing he'd go on to hammy heaven...lol And we got a turtle last week. My daughters are HUGE animal lovers, so they are loving our new place and all the freedoms they've aquired that apartment living did not allow!
As far as my blacking out. I was expecting it as it got hotter. My body just does not accept or tolerate the heat and it seems to jumpstart and kick my symptoms into overdrive. We are working (my dr. and I) on getting the right meds, but even with the meds I have problems. The video from my appointment on Monday may offer some answers, so I have new Dr.'s to see. I wish I had insurance, but we'll just keep praying and trusting in God and everything will be fine! I hope you are having a great day and PLEASE do hit me up on Skype when you can. Again, my name on there is emsa_powell.

Friday, May 27, 2011

Trying to live my life to the fullest...

Hey everyone. It's been a while since I last posted. Life has been busy for me and that is a good thing. And by busy, I simply mean that the weather has been cool enough for me to take short strolls in the yard and pot a few flowers and veggies...lol  Haven't been anywhere like on a trip or anything like that, just trying to stay occupied. I'm learning that keeping myself occupied with things I can physically do for a few minutes here and there really helps keep my spirits up. So I'm gardening. I don't have a massive garden, and I'm not able to go all gung-ho on it, but it looks nice. Of course I have lots of help in the form of a 7 and 3 year old :)
So I've been slowly building my garden up for about 4 months now. Started some seeds and realized WAY too late that I really had no clue! We didn't label anything, so had no clue what was sprouting. But it was fun times for me and the girls, just sitting on the porch floor in the shade putting tiny seeds into tiny starter pots. We probably lost about 75% of the flower seeds we planted because we did things wrong. But the veggies we have are thriving! Lots of blossoms on the veggie plants and we can't wait for fresh tomatoes, cucumbers, cantaloupe, beans, corn, etc. It's a small amount of each, but it'll be fresh! We also planted lettuce. Of course we did it wrong, so instead of getting the beautiful big heads of lettuce, we had a massive patch of green baby lettuce, but it tasted SO good! This was my daughters tiny garden patch and she has been so proud of it! I'm proud of her too!
Next year we'll be a little more garden savvy and wiser. The girls will be a year older and I'm sure they'll be doing more than they did this year. I'm limited to what I can do, but like everything else since I've been sick, I've learned that if I think about it... there is a way to do things. I've learned there is plenty of time during the day and if I do 5 or 10 minutes here and there then by the end of the day I've accomplished a half hour or so of outside light gardening and this is a great satisfaction to me. It's been a while since I have had anything that I could do so little of but get such huge rewards!
The disease is on the warpath again though. Blackouts are weekly again and they are back in the 1 hour time frame. Also the seizes and full body tremors are back with a vengeance. I really love the summer because it's so green and lush, but man does this heat aggravate and trigger my symptoms! So my time in the yard is getting shorter and shorter, but due to the massive amounts of shade we have, if I have a fan on the porch blowing directly on me and I'm in the shade I can at least listen to the birds and stuff and that's nice. I've missed that so much. At the apartments we lived at all these years, there just wasn't a place I could enjoy like that.
I have another Dr. appointment next month. I really am dreading it. I was supposed to call if the heat started messing things up with the symptoms, but I am really trying to hang in there with the meds I have now. I guess deep down I know that the meds need to be adjusted, but it's so nice only taking meds once a day.
See, my Dr. and I discussed the option of adjusting my meds based on the temperatures. Hot weather is a HUGE trigger for my symptoms so they are more severe during the warm-hot weather and less severe during the cold. So we are trying this out to see when I need more or less meds.
I'm also still waiting on my disability appeal hearing date. I really wish they'd get this thing rolling. Anyway, it's almost midnight. My sleep is really messed up (another thing that always seems to mess up when it warms up) so I need to lay down and TRY to sleep, but it'll take a couple hours or more just to fall asleep.  So goodnight everyone and I hope that you are having a fabulous day while you are reading this! God Bless!

Wednesday, April 13, 2011

Brain Fog

Well last night I was trying to get my coupons together because we haven't been to the grocery store in like 2 weeks... I really gotta get some groceries bought! HA Anyway, I sat here in my chair for the longest trying to put together a simple shopping list and the matching coupons and didn't get ANYTHING accomplished. My brain just couldn't focus. I hate it when this happens to this extreme because it makes you feel stupid when you can't even do simple things like a grocery shopping list. Anyway, I just wanted to vent. I hate this stupid disease, but more than that I hate how it makes me feel. I'm not a stupid person. When my mind is clear and the dys is leaving it alone I'm actually pretty smart. But when the disease is at it's worst, which is most of the time now, I feel as dumb as a brick. Talking to someone and forgetting what the next word you were trying to say is. Or forgetting everything you just told the person and you have no clue what you were even saying. It's like there's nothing up there and you're left standing, or in my case sitting most of the time, with your jaw dropped trying to figure out what you were saying. It's awful. I hate it. I'm 29, almost 30, and I have so many problems with my memory and cognitive thinking that it's just not even funny. I'm not 80 or 90! I'm young! So why must I live with problems that generally only come along when you are 80 or 90? I rarely say "It's not fair!" But today I'm saying it... IT'S NOT FAIR! I just want to live a normal, healthy, young life. I want to live a life where I feel like the wife and mother I was meant to be...not this half of a person feeling I always have. I want to live a life where I feel that I'm contributing to the world around me instead of always depending and counting on those in the world around me to keep me safe. I hate, hate, hate this! Anyway, I just had to vent. Even those of us who seemingly "Do so well with our circumstance" have moments like this. You just don't see them because we've grown so good at keeping them hidden and private. But I think that sometimes it's good to show exactly how you feel. Sometimes it's better not to put up a brave front and face. Sometimes you have to let people see how you feel every day of your life, even if it is just a brief glance, because maybe it will help them understand a little more.

Thursday, April 7, 2011

Dysautonomia - video 2

I ramble quite a bit in this video and even clipped out about 3 minutes of it because it was just me sitting trying to think about what I was talking about. So here is video number 2. Enjoy :) and email any questions you might have to dysblog@live.com

Tuesday, April 5, 2011

Dysautonomia - vid 1

April Showers...

Well it's the first week of April and boy did it rain hard last night! A lot of rough weather moved through our area, but thank God no one was hurt here.
So, on a different note, this is my last few days of saying I'm in my twenties. I will officially cross over into the land of the big THREE OH in a couple weeks. I'm kind of having mixed feelings. Mostly because I'm sure there won't be any type of celebration... it'll just be another day. And the other reason is I never thought I'd be turning 30 and unable to do things that I had hoped I would be able to do by now and there are things that should be so easy to do, yet they are a daily struggle for me. But on a better note, I believe I've become a stronger person and each day I find strength I didn't know I had. Not necessarily physical strength but emotional and mental strength.
So I'm going to hold my head high and move into my 30's knowing that life has been really rough for the last couple years BUT I've made it and I'll make it through the next years of struggles! I've accepted that my disease isn't going anywhere unless I'm miraculously healed by God. I've accepted that this may not be in His plan for me as well. So I try and live my life to the fullest that my body will allow. Sure, I don't get to do as much as others my age, but I live and each small task I complete I feel as if I'm an Olympian who just won gold! So live life to YOUR fullest! Don't try and live to others measures because that leaves us feeling empty. Find goals that you can meet with your bodies limitations and no matter how slow you go to meet them, work every day for that goal. Life is better when we have plans and goals and dreams. Never lose those!
So here's to all my POTSY friends out there... Keep Living, Dreaming, and Pushing for those Goals! Love you all!

Saturday, March 12, 2011

stomach pain and ER trip

Well, still hurting in my abdomen. Still not sure of the cause either. Yesterday, I made a trip to the ER on the recommendation from my Dr. office and after blood work, CT, and other labs still no answers. The Dr. there (whom I absolutely love by the way, Dr. Denney is awesome at his job and is the only one in the Bessemer ER I care to see!) said that it could still be my gall bladder, or a problem related to the Dys., or even something like an ulcer. I hate that there are never any clear answers!
  I will follow up with my Dr. on Monday, and in the meantime I at least have something for the nausea and pain, although Lortab does little for the pain. Until next time....

Thursday, March 10, 2011

eating and fear of getting sick...

I hate this feeling. Today wasn't the first time that I got sick after eating. It's been happening more and more frequently lately, but today it seemed to hit me the hardest. Right now I'm hungry, but the fear of eating and getting sick again is over riding the hunger. I guess the good thing is I'll lose weight from skipping a meal...haha  On a serious note this really stinks. I'm home alone with the girls, and just don't want to take any chances on getting sick with no other adult here. What will I do if this whole getting sick when I eat thing sticks around. How will I know if it will make me sick again like it has recently. I don't think it's an allergy thing since it's happened with such a wide variety of foods. I hate Dysautonomia and all it's stupid unknowns. I hate that one minute I'm feeling perfectly fine (well fine if you have dysautonomia, I rarely feel perfectly normal fine) and then the next second I'm writhing in pain that is so bad it brings out the tears. And you know me, I hate crying. I remember getting migraines and headaches when I was younger and my mom would say, "Try not to cry, crying will make your head hurt worse." So I learned and taught myself to breathe through my pain. I deal with a lot of pain by breathing and trying not to cry. Mom was right, all that crying did just make my head hurt worse. So now, when there are tears falling, with me that means there is some serious pain. Especially when I'm doing all that I can to stop those tears yet they still fall. I'm tired of pain like this! I'm fed up with daily headaches that send most people to bed, but I keep pushing through them. I'm tired of constantly feeling as if the ground below me is moving and I never know which way it will tilt. I'm tired of being in the middle of a great book, only to go completely blurry in my vision to the point that I can no longer make out the words. I'm sick of spending beautiful days inside on the couch because I'm a fall risk and I have no one to go outside with me other than my kids, and I definitely do not want to get sick out in the yard alone with my kids!  Today, I'm more than usual really just fed up with this stupid disease.
  I have so many things that I want to do! Places I would love to see. Events I would love to attend. Just hobbies that I wish I could pursue with extreme gusto instead of hit and miss learning and experience because I'm stuck indoors more than anything else. I just wanna be the person that I know that exists inside this broken body.

symptom explosion in seconds flat…

Just journaling down the events of the last few minutes.  We ate lunch and within 20 minutes of finishing lunch I have gained an overwhelming, bring tears to my eyes, painful headache. It was instant in it’s happening. Also blacked out a few times I think. Feel really nauseous and weak. This isn’t the first time in the last few weeks that symptoms started flaring almost immediately after eating. Makes me really not want to eat at all. I’m not sure what the link is, but there has to be something. Anyway, just wanted to journal this down real quick before I forget.  The pain in my head is awful. I’m accustomed to headaches due to having one every day since I was about 12, seriously. So when I say that my head is hurting to the point of tears, then that’s saying something. Anyway, I’m going to continue laying here on the sofa in hopes that soon the pain and all will stop in it’s intensity.

Monday, February 28, 2011

2.28.11 - Here comes the heat

Well I'm starting to feel the symptoms flaring up worse now that the heat is rising. But I've had an awesome 2 weeks. It's pretty much the same as it was last year around this time. There is a magical window lasting about 2 weeks in which I feel FABULOUS.... and then it ends...lol  But I'm just extremely thankful for that 2 weeks!  So yes, the symptoms are flaring up worse than they were during the cold weather, and the only thing I've come up with is I'm less symptomatic in cold weather. Not free of symptoms, but not as severe. So I'm laying here on the couch chilling out because there is nothing else I can do right now.
  We had some thunderstorms in the last couple hours and hopefully it's cooling things down a bit. So I'm just gonna lay here on the couch, with my feet up and watch some movies. Thank God for Netflix!!! :) Until next time! Kick Dys Butt!

Friday, February 18, 2011

5 wonderful days...

Well I thought I'd post a short one here because of 2 reasons. 1. I'm still waiting on my family to arrive from S. Ga and I have nothing else to do! 2. Because I've had 5 of the greatest days of my entire time with this disease!  I rarely get even a couple of days in a row that are this wonderful, so 5 in a row is an EXTREME treat for me! I'm still having symptoms but the fatigue is the biggest thing I've been free of this week and it's been WONDERFUL! I have awakened feeling fresh and rested for 5 days! I know, I know... I keep typing 5 days but you must realize that it's been MONTHS since I've had a day where I've not felt fatigued and worn down from the beginning of the day! BUT I have been very careful not to overdo it. In the past I would get a day or two and I'd be all gung-ho and try and accomplish months of let-go projects and housework all at once. This time, I've taken frequent breaks. I work a few minutes and I rest double the time I worked at least. Getting my feet up and taking in lots of water and gatorade while resting and while getting things done. I've accomplished a LOT less than an able person would have this week, and I still required lots of help getting my home ready for my family to arrive (THANKS SO MUCH ERIC AND ANITA!!!) but I did get small amounts of my to-do list accomplished and for that I'm so thankful! I'm not crazy. I know that DYS is likely just around the corner ready to throw me a right hook in the gut sending me careening to the floor again, but for now I'm living and enjoying the time I've got.
  Something I was able to do this week that I've not been able to do since I guess early spring of 2010 was build a small fire outside with my girls and we roasted hot dogs and ate outside. THAT was fun!  Just sitting around a crackling fire under the moonlight with my girls is in itself one of the greatest events this week!  Oh and I was able to go to a salon today and get a hair cut!!! I've not been able to go and sit at a salon in I guess 8 months at least. I've just been letting my husband trim my neckline or I lean my head over and run his trimmers over the bottom of my hair. Trust me, it wasn't a great look! And for the last 4 months at least I wasn't even able to do that, so I was getting pretty bushy and shaggy and now I've got a great new short do and I love it! Thanks to Supercuts in McCalla taking walk-ins it will likely be easier for me to get the occasional trim and shape now because appointments are hard for me to keep. I never know when a good day will hit and usually there are no appointments at the last minute, so I'm a huge fan of the "walk-in" now!
  Now even though fatigue has pretty much been absent for the last 5 days there are many other problems that just seem to love to hang around. The ability to think clearly has been hit and miss for some time now. Getting dizzy and grasping for support from anything near me to stabilize my dizzy and falling body is an almost constant as well.  Tachy has been really bad also, but hopefully my appointment on Tues morning I can address all my problems with my Dr. The warmer weather is moving in and I'm feeling my symptoms creeping back in on me as it warms up. I'm definitely not looking forward to the 70+ temps around here but they are a given when you live in the south and I'll adjust! Until next time I'm going to just sit around here waiting on my family to hopefully arrive sometime before midnight tonight. I can't wait to hold my beautiful new niece and there will be LOTS of photos to come of my weekend with my family! Have a DYS-free day and I'll catch ya later!

Thursday, February 3, 2011

A month has come and gone

Wow, we're already into February! Valentine's Day is just around the corner, and love should be in the air, but around here you just smell the pungent smell of vomit...lol  Seriously, both of my kids have been sick this week with a virus. Nothing like a kid vomiting on you at 4 am to just ruin good nights sleep! I keep praying that I don't catch this virus, but I have the feeling that it's creeping up on me as well.  I don't do well with viruses, as they deplete me of all fluids pretty fast and I am one of those who can't keep ANYTHING in me. The last virus I had, I was actually placed on a nausea drug they give cancer patients after treatments. I dehydrated in just a few hours and started having full body cramps. That wasn't a fond memory and I don't care to travel that road again! So I'm just praying I don't catch this bug. Every time I tend to Aleah, the little one that is sick now, I get her calmed down and back to sleep and then I just start spraying my arms and hands with lysol...lol  I REALLY don't want this virus, but most of all I don't want the lingering effects they have on me!
This week we were in revival from Sun. -Wed. nights. I was able to attend on Sunday night, Tuesday and Wednesday nights. I did have a hard time with the Dys. though. The last night was better though. Had trouble with dizziness and fatigue, but on Tues. night my right leg quit on me. I'm thinking it was a silent migraine since I was having the confusion and tingling beforehand. Who knows anymore. I've just come to realize that weird things are going to happen. So what if I have to drag a leg while I leave church, at least I got to go!  The youth revival was awesome though! I'm so proud that our youth were mostly able to be there every night.  One thing was said that really struck a chord with me. These youth don't have anyone in their personal lives telling them about God or Jesus! Coming from a home where I was raised on the front pew later becoming a preachers kid, that blows my mind! I'm so proud of our church for stepping in and giving these kids the option to come to church and learn if they choose to!
Oh, and the other bit of news, I got denied my disability this week again. So I just put in a call to my lawyer to find out the next step. It's frustrating to say the least. I cried. The judge actually stated that because I was able to go to church and sing that it counted against me! What he failed to note was that yes, I can do that "occasionally" but I do blackout afterwards, I am sick for days afterwards. But it's the one joy ouside of my children and family that I have left!  I can't just give it up entirely! Plus I think my notice stated that since Dysautonomia isn't listed as a disease or something and I have no mental disease, that was counted against me.  Such strange rules they have for figuring things out.  Hopefully my lawyer will help me get it worked out.  Well, my lawyer and tons of prayer!  I know that God is able to step in and with Him all things are possible, just waiting on His timing sometimes is difficult!
Anyway, that's been my week so far. I hope yours has been as good or better! Have a great day and be blessed in the Lord!

Monday, January 24, 2011

24 Days into 2011

O.K., I've started this blog 4 times already and erased everything I had so far all 4 times so maybe this time will stick.  Anyway, I just thought that I would blog since I don't think I have so far this year. There haven't been any major changes around here during the first 24 days of 2011.  The kids are still acting like their normal selves, although they are helping keep things picked up a little more around here which is nice. My blackouts have picked up in intensity again, which isn't nice, and I'm struggling to be up and about more. Due to this I have decided that it's time to get in to see my Dr. again to work out my meds and also to talk to her about some new problems I've noticed. If anything comes of it, I'll let you know what she says and what action she takes on helping me with them. 
  I have decided that even if it kills me I AM going to get some form of exercise in every day of the week. Even if it's just 5 minutes, I will do it this year. I started trying again last week, and that's when the bad blackouts picked back up but I can't keep going like I am. I'm gaining weight and I don't need or like that. And I'm losing what little bit of stamina I had even a year ago. So my goal this year is to exercise just 5 minutes a day. I've decided that this will either be on the Wii Fit, XBox Dance Dance Revolution, or my exer-bike. I set a small goal because I know I can force 5 minutes into the day, and even when I'm feeling crummy, 5 minutes isn't a huge amount of time that will overwhelm me. If I get more than that in then Go ME! But if I just meet the 5 minute requirement then Go ME!  :)   But anyway, if I were to say that I had a New Year's Resolution this would be one of them. 
  I've already done 5 minutes today on the Dance game with the girls, but since I'm still feeling pretty good, I'm planning on doing some more in a bit. If I don't make it to it, then I've still met my goal. It doesn't sound like much but for someone with such a high intolerance to any form of activity if I can manage this every day then I will feel on top of the world! 
  Anyway, that's my quick blog for the day! I pray you are having a wonderful day yourself! Catch ya on the flipside!

Wednesday, January 12, 2011

It's still so cold!

Ok, we're on day 4 of our extremely crazy winter weather here in Central Alabama. We have been staying at my mother in law's house since Sunday evening and finally got home today. I wasn't thinking clearly (brain fog) and decided to turn everything off while we were gone, including the heat. Let me tell you it is COLD in this house! Our thermostat reads 42 right now. So I'm really hoping that it gets warm rather quickly. It's comical to see both my girls actually wearing layers of clothes indoors because they usually start stripping down the moment we get inside.

The outside of our home is still frozen. The back is starting to melt but the front porch still has over an inch of ice frozen solid. The front of the house still has icicles hanging everywhere as well. But the shelter that we built for our cats did hold up and it looks as if they did use it. I know when we pulled up that Grey was coming out of it, so that made me feel better about the freezing weather and their being outside. I stuck my head inside their "cat cave" and it was a great deal warmer than outside so that was good.

I really need to be doing things around the house like unpacking our clothes we took with us and putting everything back up, but right now I'm so cozy sitting in this warm jacket (yes, i still have my coat on!) so I really don't want to get up and do anything. Cold weather days like this make it so easy to just curl up with a book or a movie!  Although with the headaches I've been having reading isn't a good option for me. Maybe a movie later though!

So for all you out there with warm weather, enjoy it! For those of us in the Southern U.S. who just aren't accustomed to this cold weather, stay warm!

Monday, January 10, 2011

Another Blog Giveaway

Head on over to THIS blog and check out the awesome Kix package giveaway. Ends tonight at 10pm CST so you need to hurry! Good Luck!

sNOw day... errrhhh uhhh, Ice Day

  January 9-10, 2011. The forecast called for it to be an awesome 2 days of beautiful bountiful snow with possibility of some ice and power outages due to the ice. So we made the decision to pack up and go to my mother in law's house and ride out the winter storm headed our way. As I packed the layers of clothing we'd need in the event of outages and snow, I kept an eye on the forecast. With every few hours passing it seemed that our snow chances were fading. By evening it still appeared that we might get a few inches. Not horrible news but considering we had been forecast for upwards of 8 inches it was a let down. As night passed it became apparent that all we would be getting is the ice. For hours it rained ice pellets, sleet, and freezing rain. By nightfall there was already a couple inches of ice on the ground and it was now raining. We woke up this morning, the day we were supposed to be able to look out and see a beautiful blanket of white, deep, fluffy snow, and we were only greeted by the remains of the ice that fell. It was still very pretty and white, but we had so hoped to get a huge snowfall.
  Regardless of the forecast that just didn't work out for us here in McCalla, Alabama we have still had a great couple of days.  My mother in law cooked a huge pot of chili and we ate on that yesterday. It was great as always. Pretty much snacked the rest of the day while we watched ice fall from the heavens. The kids have been stuck indoors but between all the laptops and televisions here they haven't gotten bored. Not to mention the playroom that Granna has fixed for the grandkids. We've all sat around watching movies, news, and Little House on the Prairie. I've come to the conclusion that I hate ice storms and the spoiled little girl on the prairie!  I did get outside and take a few photos of the ice. Even though ice isn't fun it can still be beautiful.  So here's hoping you have gotten the forecast you had hoped for over the last few days. For those north of us in Alabama with 5 inches and more of snow, I hope you enjoy it! Because next time we're calling dibs on the snowfall! *smile*
Ice on a bush. Not sure what kind, but Big Mama called it a Fire Bush.

Icecicle melting as a drop falls from it.

Saturday, January 8, 2011

Giveaway at Your World Natural!

At this link, ShaToBu, you can find an awesome give away for a body shaper! It's found on the Your World: Healthy and Natural blogsite. Check it out! Let me know what you think. Cheers!

Wednesday, January 5, 2011

First Grocery Trip of the Year 2011

Ok, I made my first Publix trip of this year. Wasn't expecting much since a vast majority of coupons expired on the 31st of December, I don't have my printer up and running yet, and without printables there just weren't many sales that were compatible for my family. Yet I did manage to do pretty good on what I bought.

First I know that you're probably looking at my photo of food bought and saying WHAT!?! at the amount of croutons I bought, but I can assure you they won't go to waste. My kids like a handful or so as a small snack, so when I find them on sale I buy as many as possible. Also, my kids and husband are Peanut Butter fanatics, and that peanut butter might last a month if I'm lucky... seriously!  So here' the breakdown of what I got today.  The (D) means that the coupon was doubled by the store.
10- New York Texas Toast Croutons - sale .99 : coupon .50/1 (D) : Final Price: FREE!
01- Crest Baking Soda/Peroxide Toothpaste - Sale 1.50 : coupon $1/1 : Final price .50
03- Ore Ida Hash Browns *3 dif kinds* - Not on sale 3.25 : Coupons $2/1 Target and $1/1 Manuf. : Final price .25 for two of them and 1.25 for one bag (only had 2 manuf. coupons) TOTAL: 1.75 for 3 bags
03- Bags Banguet Chicken (fingers, popcorn, strips) - Sale: 2.75 : Coupons None : Final : 2.75 each.
04- Birds Eye Voila' Frozen Meal - Sale 1.97 : coupon .50/2 (D) : Final 1.47 each
06- Birds Eye Frozen Vegetables (corn and green beans) - Sale .89 - Coupon .50/2 (D) - Final .39 each
08- Peter Pan Peanut Butter - Sale 1.25 : Coupon .50/1 (D) : Final .25

Price before sales and coupons : $88.36
Price after sales and coupons : $23.75!
Sales savings was $32.61
Store Coupons $17.50
Vendor Coupons $14.50
TOTAL savings of 64.61!!!

the 3 bags of Banquet Chicken Tenders, popcorn chicken, and nuggets were already put up so they aren't pictured.