Wednesday, September 19, 2012

Busting out of the PJ's!

Hola. Seriously, where is everyone!!!??? COME BACK!!!!! : (

I guess I have good news and bad news. I don't know what you want to hear first, so I'll just give you the bad news first. Besides this is my post, so you guys can't say boo. : P (jk) I love you guys.
Bad news is my gi tract seems to be more fussy the last 2 weeks.  Also I'm having occasional problems with my NG tube, sometimes it really irritates my throat. It feels fine at the moment but I'm really starting to think about the G-tube surgery. I can't keep this NG tube forever. I am thinking of switching my feeds back to that Orgain I told you about a while ago. I would like to keep using the meal replacement powders that I am now, the nutrition in them is amazing! But I'm having difficulty and sometimes I just end up having clear fluids instead and I don't get the nutrition I need. It would be better to go back to Orgain than to have clear fluids 4 days out of the week, besides the Orgain is natural and organic, and if I can handle it, I can always try to blend in antioxidant powders or babyfood! : )
Also, it seems that my hair is thinning/falling out. I started shedding like mad in August, and I read that alot of people shed seasonally (especially in late summer/early fall), and I asked my dad what he thought, and he said it was probably just a normal shed. But I have lost over half of my hair volume, and my hair is getting very thin in certain places. My hair still looks "normal" because it was very thick to begin with, but me and my dad who is used to seeing my thick hair can tell how thin it has actually gotten. My dad has changed his mind too, he can see the thin spots and he doesn't think its a normal shed any more.
I know Dysautonomia can cause hair loss, I think the biggest reason is usually malnutrition from GI problems, but there might be other reasons too. I am going to tell my GI doctor next time I see him, and ask if he can check me for deficiencies, but I doubt thats the problem unless I'm having malabsorption issues. I should be getting enough calories, plenty of protein and fat, all my vitamins and minerals, even fiber and antioxidants. I've never had malabsorption issues before. I also get these strange looking patches on my skin that a doctor once told me were probably from malnutrition . So that just makes me even more suspicious.

The good news is my birthday is this month : ) not exactly sure that I'm ready to be 18, it feels like I've missed 3 years of my life. It feels like you have to earn a birthday, and I don't know, maybe I'm not making any sense but it feels like I haven't had the chance. But I guess I don't really get a choice, I'm gonna be 18 whether I want to be or not.
A friend was going to try and come over for my birthday. : ) There is no better gift than that really, but also she is going to try to get me a kitten! I don't know if that will really work out or not, but how awesome would it be if it did? : P
OH and I found a solution to one of my sensitivity problems. I can't wear jeans because I am so sensitive to touch, so I normally just wear PJ's or skirts and dresses when its warm enough. I walk around like I just got out of bed, and most of the time my PJ's don't even match. : /
My dad got me some leggings (the smooth, silky type), and we got them big on purpose so that they would not be tight or irritating on my skin. And It works, I can just pull my jeans on right over the leggings and I can't even feel the jean material. : )

(The leggings under my jeans - just to prove they work lol) 

Also he got me some yoga pants (which look nicer than sweat pants/pajamas), and some pants like these:

Basically just some flared khakis, not scratchy at all. They are soft and smooth and loose fitting, but they look nice, much better than pajamas : ) That doesn't mean all khakis are smooth and soft though, if you are sensitive to touch like me, be sure to feel/try on pants like these before you buy them.
Oh and that reminds me, someone online recently mentioned to me that they even have trouble wearing bra's because of their sensitivity to touch. I can't wear normal bra's anyway because they don't make any that fit me properly. The closest I have to a normal bra is a strapless bra that only fits from time to time, and its uncomfortable no matter what. But for some reason I have not found a single brand that makes bras that fit me. I am either too small, or in between their 2 smallest sizes. Either way, they don't fit. So I gave up a while ago and just bought some good quality sports bras online from Roxy (one of my favorite brands). They are much more comfortable than normal bras, high quality, true to the size charts, and completely worth the money. If you can't wear bras because of sensitivity to touch, I highly recommend them.

How has Dysautonomia influenced your schooling? I have not been in school since I finished 9th grade. I did home tutoring for a while, it worked "ok" for 10th grade, it was inconvenient, I had to drop 2 classes because I could not handle them, and sometimes I had to cancel on my tutors. But we got through it.
 In 11th grade things got more difficult. My memory problems got even worse, so my tutors had to constantly explain things over, and over, and over, and over AND OVER again. It was very difficult to move through material because everyday the tutor would have to re-teach things to me. Also I canceled on tutors very frequently because I was not feeling well, and sometimes they would get frustrated or give up and they would quit on me. I went through several tutors that year.
 In my first year of 12th grade we decided to just do away with tutoring for the most part and I just took my classes online. I also did my senior project that year which was the only thing I really needed tutors for.
I'm starting my second year of 12th grade now, and I'm just taking classes online - one class at a time with no tutors. Honestly it works much better for me that way, I can work whenever I am feeling good, even if its 3:00am in the morning (and sometimes I do). I don't know how long it will take me to finish high school this way, I have more classes that I need to take than I thought, it could be a few years. : /

How does the fall effect your POTS? - Hannah. It doesn't really do anything to my POTS specifically that I know of, and I don't really struggle with allergies or anything. But it does make my Dysautonomia a little worse in general (aside from my POTS) because I am sensitive to cold, and as the weather gets colder I tend to have more chills. Even when supposedly its 75 degrees in the house. (I don't know, maybe its drafty, or the temperature in the house just varies alot, like it might be warm on the couch, but cold near a door or window, or if I touch the cold window I might be freezing for an hour.)  Oh and I have to be careful about going outside without a coat or warm clothing because otherwise the cold/temperature changes will overload me and make me sick.

This was a REALLY long post, hope you guys don't mind. -Logan : )

Jesus loves you!

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