I am FINALLY posting. I kind of took a little break being that nobody else is really posting. I have been doing okay, I guess. Last week was beyond stressful with finals and such. My grades came in today and I got an A in my first college class! Yay!! My dysautonomia symptoms have been rather calm, except for a horrible episode I had a few nights ago. All of a sudden my blood pressure shot up along with my pulse. The highest I caught it was was 170. If it got any higher, my mom said I needed to go to the ER for fluids and tests. I felt like I was going to die to be completely honest. Hahaha! I had not had a bad episode since being on my heart medication.
My GI issues are still present. The last GI doctor I saw was a complete joke. At the beginning of the appointment he was telling me that I need a therapist and that I did not have gastroparesis and that had an eating disorder. The funny thing is that his facility diagnosed me originally. Weird. Towards the end I needed an NJ tube! Lets just say that I never went back to see him. I don't know what changed his mind. I saw my PCP for an opinion on the NJ. Some labs were ran and they were all fine with the exception of my iron (it's always bad). That is only by the grace of God because I hardly eat anything. When I do, it usually isn't very nutritious. Anyways, I am losing more weight now so we scheduled an appointment with my GI doctor closer to home. I am wanting her to do a smart pill test. I have heard it is more accurate than the gastric emptying scan when diagnosing gastroparesis. I am kind of excited to see her because it has been awhile. On the other hand, I don't want to go.
Since the last time I posted I have gotten knee braces! They help tremendously. :) I am so happy. My birthday is coming up and I can actually do something that involved lots of walking. The orthopedist said that I am hyperextending my knees and aggravating all of the tendons in that area. He ordered the braces to help with that. I am also in the process of getting fitted for ring splints. The joints in my fingers are not wanting to stay in place.
Logan: I am happy to read that you are liking your tube and that the surgery did not worsen any other symptoms!
Hannah: How is the school going? Learning Hebrew sounds amazing! I wish you could teach me to crochet. :) It seems like fun to do when feeling ill. I am terrible when it comes to crafty things. How do you manage Christmas shopping with your Dys? My dysautonomia usually doesn't affect me all that much (except for fatigue) when shopping (most of the time lol). I make sure I am prepared with fluids and compression hose because heart problems always tend to come out of the blue for me. Joint pain and other EDS stuff is the big thing for me that makes shopping hard.
Wednesday, December 12, 2012
Wednesday, November 28, 2012
zombified!
posting late! I was so tired yesterday, sorry.
I've had my PEG tube for about 10 days now. I think I like it better than my NG now that the pain is getting better. Overall it went pretty well, I didn't get sick from the anesthesia, and for the most part the doctors and nurses worked really hard to keep things quiet for my sensitivity issues. They even let me wear earplugs during the surgery to help me with noise in the hallways, when they were getting me ready, and so I would have them when I would wake up. Having a private room helped alot too, I just had to cover my ears or wear ear plugs when the alarms on my IV or feeding pump went off, or if a nurse or doctor came in and was making noise.
The big problem was I felt more pain than I should have, because of my sensitivity to touch. All the doctors and nurses agreed that I shouldn't have been feeling as much as I was. Some of them seemed to understand right away when I explained about my Dysautonomia, my sensitivities in general, and my sensitivity to touch. I tried going into detail, telling them that I'm usually so sensitive to touch that I can't wear jeans without something underneath them to protect me, and that in the past I have had big problems with the wind blowing on my skin, or the water in the shower making sick. To be honest with you guys, my sensitivity to touch is something I struggle with alot more than my family seems to understand. I have a hard time usually even touching the carpet on the floor, using a washcloth to wash myself, or sometimes even picking up everyday objects like a plastic bag, my feeding tube backpack, or a pair of socks. Some people really did not seem to get it at all though. It was like everything I said just went in one ear and out the other, and it was really frustrating.
Mostly right now I'm just extra exhausted on top of all my usual symptoms, especially since its even harder for me to fall asleep than usual. I normally sleep on my stomach or my side, but I won't be able to do that for a little while. I read that you can lay on your stomach with a G-tube once it heals and everything, and sleeping on my side shouldn't be a problem once it heals either. For right now though, I have to try to sleep on my back. It takes me hours to fall asleep when I'm laying on my back, I feel so uncomfortable, and like I don't know.. unprotected or something. Its like I have to protect my stomach and I can't relax if my stomach is all exposed when I'm laying on my back. On top of that is my usual insomnia, and I normally can't fall asleep till 3 to 5 or 6 in the morning. On rare occasions, because of my insomnia I might not fall asleep at all until the next afternoon. Usually my insomnia isn't such a big deal, I just have a crazy sleep schedule. Like I might fall asleep at 4:30 in the morning, and then wake up at 1 in the afternoon. Now even when I can fall asleep (between my insomnia and not being able to get comfortable) I just keep waking up every 15 or 20 minutes or so, because its so hard for me to sleep on my back. I feel so zombified most of the time.
Hannah's question - I mostly make things by hand, I don't really go Christmas shopping. For the most part I only have to worry about giving gifts to my immediate family (my parents and grandparents) so its not such a big deal. Aside from you I don't really have any friends that I exchange gifts with anymore.
-Logan
I've had my PEG tube for about 10 days now. I think I like it better than my NG now that the pain is getting better. Overall it went pretty well, I didn't get sick from the anesthesia, and for the most part the doctors and nurses worked really hard to keep things quiet for my sensitivity issues. They even let me wear earplugs during the surgery to help me with noise in the hallways, when they were getting me ready, and so I would have them when I would wake up. Having a private room helped alot too, I just had to cover my ears or wear ear plugs when the alarms on my IV or feeding pump went off, or if a nurse or doctor came in and was making noise.
The big problem was I felt more pain than I should have, because of my sensitivity to touch. All the doctors and nurses agreed that I shouldn't have been feeling as much as I was. Some of them seemed to understand right away when I explained about my Dysautonomia, my sensitivities in general, and my sensitivity to touch. I tried going into detail, telling them that I'm usually so sensitive to touch that I can't wear jeans without something underneath them to protect me, and that in the past I have had big problems with the wind blowing on my skin, or the water in the shower making sick. To be honest with you guys, my sensitivity to touch is something I struggle with alot more than my family seems to understand. I have a hard time usually even touching the carpet on the floor, using a washcloth to wash myself, or sometimes even picking up everyday objects like a plastic bag, my feeding tube backpack, or a pair of socks. Some people really did not seem to get it at all though. It was like everything I said just went in one ear and out the other, and it was really frustrating.
Mostly right now I'm just extra exhausted on top of all my usual symptoms, especially since its even harder for me to fall asleep than usual. I normally sleep on my stomach or my side, but I won't be able to do that for a little while. I read that you can lay on your stomach with a G-tube once it heals and everything, and sleeping on my side shouldn't be a problem once it heals either. For right now though, I have to try to sleep on my back. It takes me hours to fall asleep when I'm laying on my back, I feel so uncomfortable, and like I don't know.. unprotected or something. Its like I have to protect my stomach and I can't relax if my stomach is all exposed when I'm laying on my back. On top of that is my usual insomnia, and I normally can't fall asleep till 3 to 5 or 6 in the morning. On rare occasions, because of my insomnia I might not fall asleep at all until the next afternoon. Usually my insomnia isn't such a big deal, I just have a crazy sleep schedule. Like I might fall asleep at 4:30 in the morning, and then wake up at 1 in the afternoon. Now even when I can fall asleep (between my insomnia and not being able to get comfortable) I just keep waking up every 15 or 20 minutes or so, because its so hard for me to sleep on my back. I feel so zombified most of the time.
Hannah's question - I mostly make things by hand, I don't really go Christmas shopping. For the most part I only have to worry about giving gifts to my immediate family (my parents and grandparents) so its not such a big deal. Aside from you I don't really have any friends that I exchange gifts with anymore.
-Logan
Monday, November 26, 2012
Hello, Hello!
Hello lovely ladies,
Logan was the only one that posted, and no questions.
Logan, I know you are having a tough time with your G-tube, but keep hanging in there and pressing on, I know you seem to be recovering bit by bit each day :).
I hope those of you in the U.S. had a lovely Thanksgiving, I did!
Usually I am sick on Thanksgiving and Christmas (something about this time of year I guess!) and I was excited that I managed fairly well on Thanksgiving, what a wonderful treat! I got to play with my baby cousin quite a bit which I thoroughly enjoyed (though I worked up a sweat- lol).
Right now I'm just taking each day as it comes, trying to make use of my time. I right now am just focusing on School of Biblical Evangelism and trying to learn Hebrew, as well as working on different projects with crochet. It really does help to accomplish things, even if they're little things, it inspires you to keep trying to do more :). The "trick" I guess, is to learn that it's okay then, on the days you can't accomplish anything!
I am having more fatigue it seems as well as tummy woes that since about the day before Thanksgiving I believe. But they are not too bad so that's great:).
I got a bit of early shopping done for Christmas, so I am really happy about that. Stores are crowding since black Friday and again, I'm usually not my best this time of year, so it's nice to have a chunk of it out of the way. I cannot wait to give them to everyone! :).
I hope all is well with those who haven't been posting <3 p="p">
Question: How do you manage Christmas shopping with your Dysautonomia?
Until Next Time...
~Hannah
Logan was the only one that posted, and no questions.
Logan, I know you are having a tough time with your G-tube, but keep hanging in there and pressing on, I know you seem to be recovering bit by bit each day :).
I hope those of you in the U.S. had a lovely Thanksgiving, I did!
Usually I am sick on Thanksgiving and Christmas (something about this time of year I guess!) and I was excited that I managed fairly well on Thanksgiving, what a wonderful treat! I got to play with my baby cousin quite a bit which I thoroughly enjoyed (though I worked up a sweat- lol).
Right now I'm just taking each day as it comes, trying to make use of my time. I right now am just focusing on School of Biblical Evangelism and trying to learn Hebrew, as well as working on different projects with crochet. It really does help to accomplish things, even if they're little things, it inspires you to keep trying to do more :). The "trick" I guess, is to learn that it's okay then, on the days you can't accomplish anything!
I am having more fatigue it seems as well as tummy woes that since about the day before Thanksgiving I believe. But they are not too bad so that's great:).
I got a bit of early shopping done for Christmas, so I am really happy about that. Stores are crowding since black Friday and again, I'm usually not my best this time of year, so it's nice to have a chunk of it out of the way. I cannot wait to give them to everyone! :).
I hope all is well with those who haven't been posting <3 p="p">
Question: How do you manage Christmas shopping with your Dysautonomia?
Until Next Time...
~Hannah
Wednesday, November 14, 2012
Miss You Guys!
Hey guys, sorry I skipped last week, I really wasn't feeling good.
Hannah: my hobby is pretty much the same, knitting and crocheting. Usually, even when I'm feeling really sick and I'm stuck in bed or on the couch I can still manage to knit or crochet, especially if the project is something easy. I always have several projects going at a time of different difficulties so that I don't get bored or frustrated, and so I at least have 1 easy project to work on when I'm not feeling up to tackling something lacy/complicated.
I also still really love music and I miss playing my harp. I miss playing piano and flute too for that matter, but I haven't been able to play flute since I got sick because I'm so sound sensitive. And I can't really play piano or harp very well, because no matter how hard I try, I can't memorize sheet music. I can't seem to get the hang of playing by ear either because that also involves memorization. To play by ear you have to memorize all the different sounds the keys/strings make, know what sound you want, and then what key/string will give you that sound. I try to play sometimes though, but the truth is I only play on rare occasions. Since I can't really play anything at all except really simple stuff like "Twinkle Twinkle Little Star"... I feel like there's no point, and its so frustrating sitting there useless in front of such an amazing instrument like a harp.
Not alot has happened since I last posted, but my G-tube surgery is scheduled for the 19th! So next week is gonna be a little exciting I guess. Or maybe chaotic would be a better word lol.
- Logan
Hannah: my hobby is pretty much the same, knitting and crocheting. Usually, even when I'm feeling really sick and I'm stuck in bed or on the couch I can still manage to knit or crochet, especially if the project is something easy. I always have several projects going at a time of different difficulties so that I don't get bored or frustrated, and so I at least have 1 easy project to work on when I'm not feeling up to tackling something lacy/complicated.
I also still really love music and I miss playing my harp. I miss playing piano and flute too for that matter, but I haven't been able to play flute since I got sick because I'm so sound sensitive. And I can't really play piano or harp very well, because no matter how hard I try, I can't memorize sheet music. I can't seem to get the hang of playing by ear either because that also involves memorization. To play by ear you have to memorize all the different sounds the keys/strings make, know what sound you want, and then what key/string will give you that sound. I try to play sometimes though, but the truth is I only play on rare occasions. Since I can't really play anything at all except really simple stuff like "Twinkle Twinkle Little Star"... I feel like there's no point, and its so frustrating sitting there useless in front of such an amazing instrument like a harp.
Not alot has happened since I last posted, but my G-tube surgery is scheduled for the 19th! So next week is gonna be a little exciting I guess. Or maybe chaotic would be a better word lol.
- Logan
Monday, November 5, 2012
:)
Hey lovely people, no one has posted since my last post, so this will probably be short :)
Note: please excuse errors, writing from my iPad :p
I've been having my ups and downs but today I am please to say I've accomplished A LOT more than usual, though as you guys understand, I battled through POTSiness, headaches, bad headaches, upset stomach... Y'know (though I think I am actually sick with something viral) however, I still managed to get up earlier than usual (yay for saving an hour, though it gets darker earlier lol) but I;
Helped a child with homework, did some of my own work, crocheted (almost finished a scarf I am working on!), helped my mom with daycare, went with my mom and the rest of the crew we had here to pick up dinner, then went back out to two different stores, oh and I exercised today. I am expecting a crash, I don't know when, hopefully never :). (I feel somewhat accomplished today, I feel the need to share my excitement!).
I hope the rest of you ladies are well (I'm shocked I remembered to post! Yay!) and hanging in there. It is so cold here! I love bundling up (so cozy!) but adjusting to indoor temperatures I feel is going to start to be a challenge, in the beginning of the day I was fine but then coming in (plus the wood stove would have burned even longer) out of the cold my hands are getting hot and stuff and as odd as it sounds, I pretty much know if my hands are hot, I will most likely get POTSY, it's one of my indicators. Sometimes I like Reynauds for the simple reason that it can keep this from happening too much ;) anywho, I will let my previous question stand until we get some more posts :)
Until next time...
<3 hannah="hannah" p="p">
Note: please excuse errors, writing from my iPad :p
I've been having my ups and downs but today I am please to say I've accomplished A LOT more than usual, though as you guys understand, I battled through POTSiness, headaches, bad headaches, upset stomach... Y'know (though I think I am actually sick with something viral) however, I still managed to get up earlier than usual (yay for saving an hour, though it gets darker earlier lol) but I;
Helped a child with homework, did some of my own work, crocheted (almost finished a scarf I am working on!), helped my mom with daycare, went with my mom and the rest of the crew we had here to pick up dinner, then went back out to two different stores, oh and I exercised today. I am expecting a crash, I don't know when, hopefully never :). (I feel somewhat accomplished today, I feel the need to share my excitement!).
I hope the rest of you ladies are well (I'm shocked I remembered to post! Yay!) and hanging in there. It is so cold here! I love bundling up (so cozy!) but adjusting to indoor temperatures I feel is going to start to be a challenge, in the beginning of the day I was fine but then coming in (plus the wood stove would have burned even longer) out of the cold my hands are getting hot and stuff and as odd as it sounds, I pretty much know if my hands are hot, I will most likely get POTSY, it's one of my indicators. Sometimes I like Reynauds for the simple reason that it can keep this from happening too much ;) anywho, I will let my previous question stand until we get some more posts :)
Until next time...
<3 hannah="hannah" p="p">
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