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 :)
~Hannah
Tuesday, October 30, 2012
Wednesday, October 10, 2012
Nightmares?
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!
Logan.
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!
Logan.
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!
-Cheyanne
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. :)
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!
-Cheyanne
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. : /
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
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. : )
Also he got me some yoga pants (which look nicer than sweat pants/pajamas), and some pants like these:
http://oldnavy.gap.com/browse/product.do?cid=7520&vid=1&pid=675504&scid=675504002
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!
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:
http://oldnavy.gap.com/browse/product.do?cid=7520&vid=1&pid=675504&scid=675504002
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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