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.

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!

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!

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!