Wednesday, September 26, 2012

Ok. Time for some tough love

I know you guys aren't feeling well (I get it, I'm sick too).  And I know some of you are really, really, really busy. But we all agreed to this blog, and to a day on which we were supposed to post. I don't know where you guys have all been, and I really hope you guys are ok, but me and Cheyanne can't keep this blog going all by ourselves. I'm not trying to be mean, I skip too sometimes, and sometimes I'm just late and I don't always post when I'm supposed too. But please get it together guys, we need you to post. Even if you post late, or if all you post is a short paragraph or a picture and a smiley face letting us know you're alive! Please post something!

Ok, sorry about that.

I turned 18 this week : ) Can't say we did any thing terribly exciting, I haven't had a birthday party since I got sick. But this year at least we figured out how to make a liquid birthday cake. Usually we just forget the whole idea because I can't eat solids, but this year we took some cake batter and poured it in a glass dish (like you would pudding or something), and then we drew "Happy Birthday" on top with frosting.  : P

Yeah, ok.... I still threw up, and to be honest all the sugar made me feel terrible! But it was worth it! I got to have a birthday cake! : ) Well sort of....
You guys get it.
 Liquid diets can be fun if you have imagination.

I had a pretty good birthday this year though, and Hannah - thanks again.

 I even had my tube out because my throat was bothering me, my stomach was bothering me, and it was time to switch to a new tube anyway.. So I got to enjoy a little freedom for a while. ; )

I wish I had something really profound to say lol but I don't. I'm sure you guys (especially those sick and homebound) have the same conflicts that I do over my birthday. Its really hard for me to explain, I guess for those of you who are homebound, I don't really have to explain, but for those of you who aren't - It feels like I've lost/missed so much, and a birthday is just a reminder of how much time has gone by and how much, exactly, that I've missed. It reminds me that I'll never get back that time that I've missed, I'll never do those things or make those memories I always wanted to.
 It feels like there's this part of me that wants to stop time, or maybe rewind it and go back and relive everything. Only as someone who is healthy. So having a birthday just frustrates me, its like going in the wrong direction, I want to go back. But I know I can't go back, and even if I could, it would be wrong. God has a plan, and as painful as this trial is, if I don't go through it God won't be able to mold me into who I'm supposed to be.  So I have these mixed feelings about it that drive me crazy, and a birthday doesn't help anything.
 And it feels like you have to earn a birthday. I said that before, and I know thats crazy... but thats honestly what I feel. Its like I was supposed to earn my 18th birthday, just like I was supposed to earn my 17th, my 16th, and my 15th birthdays. I was supposed to earn them by accomplishing things, making memories, building relationships with people. Does that make sense? But I didn't. At least not the way I wanted to. Being sick I accomplished things, but not the things I wanted to. Being sick I made memories, but definitely not the memories I wanted to. Being sick I did build relationships, but I have lost almost all of the relationships I used to have. All those people I used to know before I was sick are gone, they aren't in my life any more, and if they really cared about me they would have made an effort to stay in my life, but they didn't. And it hurts. The relationships that I have built are all.... I don't know how to describe it... artificial? They are relationships I have built through my computer and cell phone. Don't get me wrong, I love to text, email, instant message, and Skype (although I don't get to Skype very often). But its not the same at all as actually being with a person. Someone you can see, hear, feel, touch, and hold. Its not the same. At all!
To be honest the only relationship I have left that's different, the only one that's not artificial, the only one that was there before all of this started, is my relationship with God. And in the end, that's really what makes everything worth while. I wouldn't trade my relationship with God for anything, its the most precious thing that I have. I wouldn't even trade it for those years, those memories, or those people that I lost. I would give them all up again if I had to. The truth is that for everything I've lost I've gained something much more valuable, and for everything I've gained I've lost something I can never get back. I guess I should just be able to choose which way to look at it, but its never that simple. Sometimes I'm happy about what I've gained, sometimes I'm upset about what I've lost, and some days I'm both or I'm completely confused and I don't know what to feel. I guess God still has a lot of work to do on my heart - lol but I hope that helps you guys understand.

Umm.... otherwise besides my birthday not much has happened. : / We have told my GI doctor about my hair falling out, and he supposedly sent some lab slips for some blood tests but we haven't gotten them yet. My shedding has actually slowed down a little bit over the last week. I'm still shedding a ton every day! But at least I don't (usually) get a whole handful every time I run my hands through my hair. I don't know if thats a good thing, or if I've just lost so much hair that now that it just appears like less is falling out because I don't have that much left anymore, at least not compared to the amount of hair I used to have.
I also have a physical coming up soon. I haven't seen my primary doctor in a long time, but she was sweet enough to call and wish me happy birthday! I was not expecting that at all! This is also the doctor who figured out I had Dysautonomia. 

I hope you guys are doing ok, and I really miss reading your posts!

Jesus loves you.

- Logan

P.S. I like to post late at night on Tuesday (which is my day).. but sometimes depending on how long it takes me to write a post I end up posting after midnight.. so my post technically says Wednesday. I hope nobody minds and that it isn't confusing, I do this alot but I always sign my name to avoid confusion. : /

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!

Friday, September 14, 2012

Thursday, September 13, 2012

Did everyone else fall off of the face of the earth?

Nobody has been posting in weeks! ): I really hope everyone is okay. I haven't talked to any of y'all in awhile, with the exception of Michelle R. and Rhianne.

I've been swamped with school work. I just finished my first essay for college! Soon I will present my first presentation for college. I am praying that goes smoothly because I am terrible in front of the class. Right now I am finishing up some chemistry work. I do not want to have to work much over the weekend. Going to school is utilizing nearly all of my energy. I sleep and read my weekends away because by the end of the week I crash. I am going to have to find a better way to manage this. Skipping church this often isn't working and my boyfriend is going to get sick of not ever seeing me. I am trying to get all of my difficult classes out of the way now, so that the next couple years may be easier. After this year I will have completed all of my required math classes. I am getting chemistry out of the way. In the next years I will only have to concern myself with Biology, history (ew), and English classes.

My stomach has been a little better motility wise I guess. I have not been as nauseous, but I still am drinking the majority of my meals. Now my intestines are slow. Go figure. Everything changes quickly with me! I am drinking Powerade to try to get my intestines to work better. Powerade used to upset my belly quite a bit. I don't tolerate liquid sugars well. I tried Gatorade last night with no luck. The Powerade did work!

I have come to the conclusion that exercise is my only hope...for Ehlers Danlos anyways. I was not even aware that I had EDS until I lost all of my muscle from gastroparesis caused from my autonomic issues. The difficult part is attempting to exercise without exacerbating my POTS symptoms and stretching things out even more. The majority of the little workouts I have found require moving the joints out of the normal range of motion. That only causes problems. I am currently doing the treadmill (walking/jogging) for 15-30 minutes, 25 situps, and 5 pushups. My major problem areas, with moving around/subluxing anyways, are my shoulders and right hip. If I can just build up some muscle, I could prevent dislocations and such! Finding the correct routine is going to be a challenge.

I guess I will hold off with the questions until everyone comes back to the blog. Okay?

God bless!
Cheyanne. :)

Tuesday, September 4, 2012

I'm still alive!

I skipped 2 weeks in a row, I have not been in a mood to write lately, I have not been posting much on my personal blog either. I don't know.
It rained really good today, I absolutely love the rain. Sometimes I think I like it more than sunshine. I have been collecting rain water actually for my plants, they don't seem to like the tap water here at the new house and they seem MUCH happier with rain water. One plant in particular actually turns yellow and begins to die when I give it tap water, needless to say I am afraid of the tap water and I don't drink it unless I have to.  Oh! And I've also noticed that when I pick flowers they last much longer when I keep them in rain water than they last in tap water.

I have a ton of huge plants in my room now, and it literally does wonders for my cabin fever! When I go in my room I don't even notice the walls. All I see are the huge plants everywhere, and I feel like I'm outside in a garden, not trapped in my room.

I am going to be starting another online course soon, it took a while after we moved to get registered, but I'm actually looking forward to the course, It'll give me something to do! : P

I forgot to write down the questions I'm sorry, I will try to write them down and answer them later.