Tuesday, October 30, 2012

Hey ladies! Long time no post! I seriously keep forgetting, and forgetting that Rhianne and I switched days, I'm so sorry!

I've been feeling like I'm going slightly down hill again, but I guess you could say that's to be expected with this time of year, just disappointing as you guys know. By we preservere indeed.
It's been a crazy day with Hurricane Sandy but things should be calming down soon, thankfully we didn't get anything too bad. But that leads me into one of the questions...

Logan wanted me and Cheyanne to explain how storms make us sick. For me, I usually get headaches/sinus stuff, plus extra POTSy, as of lately I can get bradycardia, as well as these episodes where I gt headaches and one side and/or other random parts of my body go weak/numb. I don't entirely know how to explain it but it also feels like there's just this certain feeling you get... I hope that answers your question! Also, about what Christine was referring to with clothing, I think that might be what's called "Under Armor" but I'm not sure. There are also thermals! You also asked about dreams, the nightmares sund horrible, I'm sorry to hear about them. I really don't usually have nightmares, but occasional bad dreams and just weird dreams (not good or bad), sometimes they are vivid (if I understand what is meant by that) but usually their dreams that I just forget, unless its a bad one, but a nightmare for me is rare.

Cheyanne didn't have a question but I hope your woes slow down girl and things ease up!

I send my love to all of you guys, excuse the fact that this is like short and probably weird lol, it's 1AM on Tuesday :p. Logan reminded me about posting.

My question is, what's something (like a hobby or skill) that you do, that makes you feel you've accomplished something when it's difficult to do much at all? I've been into crochet and sewing lately and even if I can't do anything else in a day if I can complete a project I feel like I did something with my day :)

Thanks for reading :)

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!


Thursday, October 4, 2012

Blood sugar catastrophe!

Hello y'all!! Sorry I missed last week. I've been struggling balancing my classes and being ill. Before I get into all of the negative issues health wise, I do have some good news to share! :) Although I have been having difficulty managing, I am doing surprisingly well in my college class. I got a 99 on my first presentation, a 95 on my first essay, and was one of the 3 people in the class who got an A on the quiz. She had myself and the other two people stand up in front of the class for a good 15 minutes. I didn't feel POTSy at all!

During the past month or so I have started to feel some blood sugar issues. I was assuming they were low by my symptoms, and I still truly believe at that time it was. A diabetic friend from church gave my mother a glucose meter for me to use. While I was in Target, about two hours after I had just eaten Sonnys, I felt an episode coming on. I thought it was POTS because of the faintness, clammy, dizzy, nausea, etc. I took my pulse and it was fine. I then took my sugar and it was 156. My mom took hers and it was 120. We both ate at the same time. After that, we called my doctor. She wanted me to monitor my sugars the entire weekend. If I woke up in the morning and it was over 100, then she was going to admit me. Everything was fine the remainder of the weekend.

After college today I stopped by McDonalds to get a small fry and a hamburger. Usually I drink an Orgain beforehand, but I did not feel like it today. About an hour later I started feeling horrendous. I felt nauseous, like car sick nauseous/POTS nauseous, not gastroparesis nausea. I got dizzy, and later came the headache. I thought maybe I stressed my body out standing for the 15 minutes. Once I got home, I thought maybe I should take it being that I had not taken it all week. I was expecting it to be fine. It was 181. I had eaten 2 hours ago then. We called my doctor AGAIN, and she said to get in there now.

The appointment went okay. We laughed like always! She said I am a mess. Regarding the sugars, she said she was concerned. She does not think it is diabetes because my sugar came back down too quickly for that to be. In her opinion, it is glucose intolerance caused from dysautonomia. Lovely. The good thing is that it can be treated....but only by insulin. She suggested the insulin pump instead of the shots. I don't want that, but I guess I have to do what I have to do. Before we even get into all of that she ordered 5 blood tests. I have to miss class in the morning to go get them done. Depending on the results, we will possibly discuss the insulin and seeing endocrinology.

I have started doing yoga for exercise and I love it!!! And look what I did. I didn't even sublux my shoulder. I have been trying to be beyond careful. If anyone would like the videos, then just ask. They able you to workout without feeling all out of breath. :)

Hannah's Question: How does fall affect your POTS?
I believe that it improves my POTS. It isn't quite 100 decrease out anymore, only 90. ;) Oh, the Florida heat. In the summertime it constantly rains here, which sort of makes me miserable. I fainted because of a tropical storm that was here. Fall is nice.

Logan: Happy belated birthday! I know your feelings exactly about birthdays. I understand that you want to go back in time so badly. I am about to turn 16. I was just telling my mom how I don't want to. :\

I guess that is all for now. God bless!