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.

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

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!

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....

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.