Wednesday, October 10, 2012


Sorry I'm a day late, I really wasn't feeling good last night, I had a long day and I totally crashed in the evening.
I really miss you guys, I hope you start posting again soon!
Cheyanne, I'm so sorry to hear about your blood sugar! we are actually thinking I might be having blood sugar problems too of some sort, but we aren't sure. Sometimes when I have something really sugary like a popsicle or when I chew alot of sugary gum, I get nauseous, I get a headache, sometimes I even get dizzy or my vision goes blurry. But its usually over really fast.. anywhere between 15 seconds - 2 minutes and then its all over. Really that's it! So its seems weird that my body can correct the problem so fast, I don't know if I'm actually having blood sugar problems or if I'm just a little sensitive to sugar. Also the sugar from fruit doesn't bother me, so if I drink a little fruit juice or if I make a popsicle from fruit baby food (instead of having the store bought ones with refined sugar in them), they don't bother me. And sometimes my tolerance to sugar gets better and sugar just makes me feel.. gross.... I think that's somewhat normal. I think alot of people feel kind of sick or gross after having something really sugary.
Anyway, we aren't sure whats going on yet with that at all.

I finally decided to have the G-tube surgery. I'm not sure when it will be yet, my appointment is next week and because I'm 18 now I guess they have to explain everything to me all over again and then I have to sign consent forms. I find that first part really silly for some reason. Its like I became stupid when I turned 18, and so they must re-explain the surgery to me. I know, I know, that's not the reason, but it just sounds like it lol.

My hair continues to fall out. Today I woke up and there was shed hair all over my bed, all over me, and of course a nasty amount came out when I brushed it. Some days the amount that comes out isn't so bad, and other days like today it comes out in handfuls, but either way I shed a lot every day. Also my body hair is thinner and grows much slower than it used to. And there are some places like my legs where there are large bare patches of skin where hair isn't growing at all. My primary doctor said it was probably either from my weight loss or my diet, because I have bad days all the time where I can only have clear liquids. Usually I have at least 2 of these days a week. But we are still waiting for my blood tests to come back. And I would still really like to know what these strange patches are on my skin. They kind of freak me out a little, mostly because I have no idea what they are or why they only appear on certain places on my skin.
On a happier note though, I wish you guys could see the sunsets and sunrises we have here at the new house. The other day it looked like someone set the clouds on fire! But its hard for me to take pictures of them when I'm not feeling well, and now that its getting colder too, I can't always just go outside whenever I want.
Oh that reminds me, Christine from our blog told me that runners wear special clothing in the winter to keep warm, and she said I should ask someone about it. I think the clothes she was talking about are skin tight which means that I could wear them underneath my sweat pants and coat ect.. If I wanted to try to go outside. The winter is the hardest time of the year for me just because I can't even go out in the backyard, and all I can do is look out the windows.  Bundling up with normal winter clothes isn't enough.  Sometimes I get sick right away from the temperature change, and sometimes it takes a minute or two from being out in the cold, but I always get sick either way. But maybe if I wore the clothes Christine told me about underneath, it would help. Its worth a shot right? I will have to ask.

Cheyanne and Hannah, can you guys explain to me how storms make you sick? I know alot of people with Dysautonomia who say that the weather (especially storms) make them sick, but since I don't have that so much, I don't really understand it. Thunderstorms make me sick sometimes because of the noise and flashing light, but usually I just wear earplugs and/or sound mufflers for the noise and I go some place in the house where I can't see the flashing light, and them I'm ok. Also temperature changes can make me sick, so I struggle more with certain things in the summer when its hot, and in the winter when its cold, than in the late spring and early fall when the weather is perfect and its not too hot or too cold.  But I think its something more with you guys, so what is it exactly?

One last thing though, I wanted to talk to you guys about nightmares. Nightmares and vivid dreams are actually a Dysautonomia symptom believe it or not. I'm not sure how it works, but it is on the symptom list nonetheless. To be honest with you guys, at least 90% of my dreams are nightmares, good dreams are rare treats. And sometimes my dreams are extremely vivid. I'm not sure how to describe this.. but sometimes I'm like completely conscious in my dreams. Like I can think very clearly, and I actually believe that I'm awake. Sometimes when I have vivid dreams, in my dreams I can think and remember things even more clearly than when I'm awake. In my vivid dreams I can easily remember peoples names, places, do math in my head, remember recipes, numbers, and music. Its really weird! I think maybe this is because I'm laying down when I'm asleep, but when I'm awake I'm upright (sitting or standing) which means because of my POTS I don't get enough blood to my brain. But I have no idea really so I'm just guessing here.
I guess I was just wondering how many of you struggle with constant nightmares, or if any of you have really vivid dreams sometimes? Especially if you can think clearly in your vivid dreams, but you can't when you're awake. I'm not sure why I'm asking this now because most of you aren't posting, but I'm just curious.

So I'll talk to you guys next week.

Jesus loves you!


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