Hey guys, I am now a Monday poster (I, meaning Hannah!), Rhianne and I switched days because Fridays are better with her schedule.
I have still been on the roller-coaster of POTSy land- but aren't we all? :P. I can't remember if I told y'all but my cardiologist switched things up with my meds. He has me on Mestinon and changed my dosage around on my Midodrine (I will write more on that with Michelle K's question), and I tried the Mestinon at the full dosage he prescribed for three days and I couldn't take it. So now (a week or two later- I can't remember lol) I am trying it at 1/4 the dose and am going to gradually increase it. I hadn't even discussed it with him but in the process of getting other questions answered over phone he had already said to half it. So, instead I quartered it, hopefully I won't even need to go to the full dose. He put me on it for GI symptoms, so I'm assuming he's thinking gastroparesis? But he said it will also help my heart.
My pulse has been bothering me lately because it's gone as low as 50, and that scares me and makes me uncomfortable. I find I am more comfortable around 70, and until I had the mess with the Propranolol (I'm assuming my body hasn't reset itself yet, around 3 or 4 years ago with my first time ever taking Midodrine it set me off with high blood pressure, and then I have had high and low blood pressure since), however, I am still getting higher pulses frequently. I also am on a thirty event monitor since I have been having so many irregular beat sensations. I only have like nine days left and I think I am just finally learning how to use it properly (haha).
Let's go on to the questions, shall we?
Miranda asked... Do you have a geographic tongue? I think I remember us talking about this forever ago, haha, but I do not. I hope things go well with looking into colleges, you go girl!
Michelle R asked... what are y'alls plans for the summer? I am hanging out with family and trying to study and learn things on my own and now I am starting back up on the online School of Biblical Evangelism, its been a while since I've done much with it, so it feels good to be working on it again. Yay for no deadlines! We are also possibly doing a beach vacation with my brother and his family. Another Yay! Congrats on graduating! I loved graduating, so exciting, I hope it has been just a sweet for you, though I know it's bitter sweet!
Logan asked... Does anyone else avoid eye contact during muscle jerks? Y'know, I can't really say to be honest, I don't remember! But I can definitely understand why that was awkward, I think I just kind of hope the person didn't notice Lol. I hope you start feeling better hun and that things improve with your GI!
Cheyanne asked... What part of your head are your headaches/migraines located in most of the time? They are usually the top and back, and can either be tight muscles, burn, or be like nausea in the head. I also suffer from vertigo time to time. And... Do y'all get random chest pain and palpitations like that? Yes, I know it's scary! I could write a long post just on what happened about a year ago that seemed to set off PVC's for me. For me, chest pain, PVC's, and heart burn all seem to run together, at least the feelings of the symptoms can be difficult to decipher which is which. I think it'd be good to see your cardiologist, he might do what mine have done for me and put you on a monitor to see what exactly is happening <3. I plan on looking up the types of EDS and your other diagnoses girlie, hang in there! I wish I had some knowledge on them to lend words of wisdom. <3.
Michelle K asked... What medications are you on for POTS/Dysautonomia and what dose? I am on Lexapro 20mg, and right now I'm adjusting the dose at times because of my heart rate going lower than what's comfortable, and switching between 20mg and 10mg, and I am not recommending that to anyone, I'm doing it on my own out of what I feel to be necessity to keep my pulse from going to low. I am also on Midodrine, 5mg twice a day and 10mg three times a day, so 40mg total a day. I am also on generic Mestinon, right now I am starting with 15mg, working my way up to that three times a day, taken before each meal, then if all goes well, I'll add in a 1/2, etc. He wants me to be eventually be taking 60mg, three times a day, so a total of 120mg. I'm sorry to hear things aren't going so well with you lately, and also with your job, I know that must be difficult emotionally with your career having a lot of importance to you <3
Rhianne asked... why did we watch her video? And I started watching it whenever you posted it ages ago, but never finished and then tonight I listened and watched while talking to you, pretty cool huh? And because you are Rhianne and you are awesome and Australian. ;) Also, how much independence do you have? I feel like I am slowly gaining it back, but I still do not have much. I really don't go anyway without one of my parents except once in a while. However, I am starting to do things like walk our long driveway by myself, just typically letting someone know I'm doing it in case I don't make it back up, haha. Things like that- is how my independence mostly works. I'm independent, based on my dependence on my parents- I can do mild things independently, with their supervision or awareness of it. I hope things improve for you girlie <3
Erin, I don't think you had an "official" question, though you did ask if any of us have had a bone marrow test done, and I wish I could give some advice but I have not <3. Wow girl, bless your heart you certainly have had a lot going on. I'm glad your surgery is done and over with and resolved everything it needed too. I hope you can get things figured out to with the MCAD <3. I am so proud of you with your schooling accomplishments! GO ERIN! You have certainly put up quite a fight with your illnesses to accomplish your dream, how amazing!
My question... How do you do when you are in the sun? Sometimes I love sitting out in the sun, it just feels so good, but it can give me a headache, and there was a time where if I just stepped outside in the summer it was like *whoosh* blood pooling, so I'm curious, do you guys avoid the sun? Sit in it for some D? Etc.
Thanks :)
Until next time... <3
~Hannah
Showing posts with label Hannah. Show all posts
Showing posts with label Hannah. Show all posts
Monday, July 2, 2012
Friday, March 30, 2012
=)
Hey peoples! Hannah here!
The past couple of days have been exhausting, I haven't slept in my own room the past two nights because of... (Ahhh!) Spiders! So, today my mom went clean crazy in my room (I love that woman, she's so sweet!) and declared it "Spider Free!" So, I am hoping to get a fair night's sleep :)
I also decided to take on a time consuming project. I've been on a "recycle crafts" kick and so today I worked on making a container out of old magazines. If you look up Magazine garbage can you will probably find it... That's where the idea came from but mine is much smaller and will probably function as a pen holder or other small things once I'm finished. I feel excited to be doing something productive!
One of the questions is in relation to what I was going to write about next and it's from Cheyanne: Do y'all feel like you are getting worse? Not necessarily. I'll explain :). For a while I felt like I was just going down hill, and end of March-beginning of April, after starting an SSRI, I felt great improvement. Then there were bumps in the road of course, but I was doing pretty well. A year later from my hospitalization in March of '11... I can say I am amazed by my improvement. However, I feel like after having much improvement, I am kind of stuck at my symptom level. But that doesn't mean it's going to stay there, and I hope it changes for the better. I don't remember if I posted about it on here, but supposedly (At least with some POTS patients) there is a "peak" in the symptoms, where you keep getting worse until you hit your peak, and then you start to get better. I think for those of you who are young-mid teens, you may reach your peak and then see improvement. I am not sure if that's what happened to me or not (I do believe this information was more based on POTS developed during puberty but not positive) because when I was 17 was when I started my SSRI, and the period when I went off an SSRI, I felt very horrible. But, no matter what it was, that "peak" thing can still serve as a hope. And even if that's not the way it will happen for all of us (still not sure it even happened for me- I kind of think at least a chunk of it was due to the SSRI) there is still hope because we grow to learn more about what we are dealing with and learn new coping strategies.
I owe God my deepest and sincere gratitude for the improvement I've seen. God is good!
I am also sorry to hear about things going on with you Cheyanne with the possible arthritis, etc. I find that interesting because POTS can be linked to autoimmune diseases, so perhaps that is something to continue looking into, or perhaps that just may be something you feel is already figured out!
On to s'more questions;
Erin: Do any of you have narrow pulse pressures? Yes! I do get narrow pulse pressure and it does not feel good so I am sorry to hear you are experiencing that as well as high blood pressures mixed in. What I do is I always salt (not a lot) and water (chug) (even if the bottom may be on a higher than normal side for me and top on a lower side) however, I am not sure if I'd be giving you bad or good advice to suggest that because of the highness of what your lower number can get too. Perhaps you could test run it when it is in the 90's on the bottom (I do believe I have done it in the 90's) if your top is lower and see what happens, however, you are a smart girl, use your discretion and be safe :)
Also, I am sorry to hear about your GI symptoms hitting you- I know that's yucky... I have no idea what my GI has been doing, suddenly seems like mine are changing up their game a bit! Maybe it's in the air? ;-) But seriously, I hope you feel better girl!
Logan: What was your favorite "ladybug" or moment of joy this week? Probably my parents' selfflessness in helping me be comfortable while my arachnophobic self steered clear of my room. Sweet question by the way! Also, Can you guys vomit silently? I have vomited in some time, but I do not believe when I do that it is silent. I think I'm more of a dry-heaver at times.
I hope things continue to improve with your feeds. Every bit of progress counts! =).
Miranda, I do not believe you asked a question, but sorry to hear you are "Cardiologistless" for the time-being. I hope Dr.Grubb helps you tons! You see him in April right?
I am not sure who asked this question, but What is your favorite color? Lime Green :) Love it! Also, I'm sorry I'm not sure who posted (the lovely Francesca or one of our lovely subs maybe?) but I hope things with your testing helps with your day-to-day life for the better!
Rhianne: Do you schedule your time? No, haha. I think it's great that you can though! I usually just think "this is what I want to accomplish" and usually I only accomplish some of whatever it was!
Also, your question about Cain and Able, I'm going to give you a link to a site I love that answers that question; Click Here Also, always feel free to message me with questions, I don't mind one bit, I'm the type of person that loves those kind of conversations :)
My question: How do you guys do when you sit down/lay down to read? Random question I know, but I was wondering because, when I read, though I may find the book very interesting, because of being in such a still position (I assume), I start to dose off (as hilarious as that may sound) and then I'm fighting it like "Noooo I want to read this book!"... Though sometimes I can read just fine! How about you guys?
You guys have a fabulous weekend :)
Until next time...
The past couple of days have been exhausting, I haven't slept in my own room the past two nights because of... (Ahhh!) Spiders! So, today my mom went clean crazy in my room (I love that woman, she's so sweet!) and declared it "Spider Free!" So, I am hoping to get a fair night's sleep :)
I also decided to take on a time consuming project. I've been on a "recycle crafts" kick and so today I worked on making a container out of old magazines. If you look up Magazine garbage can you will probably find it... That's where the idea came from but mine is much smaller and will probably function as a pen holder or other small things once I'm finished. I feel excited to be doing something productive!
One of the questions is in relation to what I was going to write about next and it's from Cheyanne: Do y'all feel like you are getting worse? Not necessarily. I'll explain :). For a while I felt like I was just going down hill, and end of March-beginning of April, after starting an SSRI, I felt great improvement. Then there were bumps in the road of course, but I was doing pretty well. A year later from my hospitalization in March of '11... I can say I am amazed by my improvement. However, I feel like after having much improvement, I am kind of stuck at my symptom level. But that doesn't mean it's going to stay there, and I hope it changes for the better. I don't remember if I posted about it on here, but supposedly (At least with some POTS patients) there is a "peak" in the symptoms, where you keep getting worse until you hit your peak, and then you start to get better. I think for those of you who are young-mid teens, you may reach your peak and then see improvement. I am not sure if that's what happened to me or not (I do believe this information was more based on POTS developed during puberty but not positive) because when I was 17 was when I started my SSRI, and the period when I went off an SSRI, I felt very horrible. But, no matter what it was, that "peak" thing can still serve as a hope. And even if that's not the way it will happen for all of us (still not sure it even happened for me- I kind of think at least a chunk of it was due to the SSRI) there is still hope because we grow to learn more about what we are dealing with and learn new coping strategies.
I owe God my deepest and sincere gratitude for the improvement I've seen. God is good!
I am also sorry to hear about things going on with you Cheyanne with the possible arthritis, etc. I find that interesting because POTS can be linked to autoimmune diseases, so perhaps that is something to continue looking into, or perhaps that just may be something you feel is already figured out!
On to s'more questions;
Erin: Do any of you have narrow pulse pressures? Yes! I do get narrow pulse pressure and it does not feel good so I am sorry to hear you are experiencing that as well as high blood pressures mixed in. What I do is I always salt (not a lot) and water (chug) (even if the bottom may be on a higher than normal side for me and top on a lower side) however, I am not sure if I'd be giving you bad or good advice to suggest that because of the highness of what your lower number can get too. Perhaps you could test run it when it is in the 90's on the bottom (I do believe I have done it in the 90's) if your top is lower and see what happens, however, you are a smart girl, use your discretion and be safe :)
Also, I am sorry to hear about your GI symptoms hitting you- I know that's yucky... I have no idea what my GI has been doing, suddenly seems like mine are changing up their game a bit! Maybe it's in the air? ;-) But seriously, I hope you feel better girl!
Logan: What was your favorite "ladybug" or moment of joy this week? Probably my parents' selfflessness in helping me be comfortable while my arachnophobic self steered clear of my room. Sweet question by the way! Also, Can you guys vomit silently? I have vomited in some time, but I do not believe when I do that it is silent. I think I'm more of a dry-heaver at times.
I hope things continue to improve with your feeds. Every bit of progress counts! =).
Miranda, I do not believe you asked a question, but sorry to hear you are "Cardiologistless" for the time-being. I hope Dr.Grubb helps you tons! You see him in April right?
I am not sure who asked this question, but What is your favorite color? Lime Green :) Love it! Also, I'm sorry I'm not sure who posted (the lovely Francesca or one of our lovely subs maybe?) but I hope things with your testing helps with your day-to-day life for the better!
Rhianne: Do you schedule your time? No, haha. I think it's great that you can though! I usually just think "this is what I want to accomplish" and usually I only accomplish some of whatever it was!
Also, your question about Cain and Able, I'm going to give you a link to a site I love that answers that question; Click Here Also, always feel free to message me with questions, I don't mind one bit, I'm the type of person that loves those kind of conversations :)
My question: How do you guys do when you sit down/lay down to read? Random question I know, but I was wondering because, when I read, though I may find the book very interesting, because of being in such a still position (I assume), I start to dose off (as hilarious as that may sound) and then I'm fighting it like "Noooo I want to read this book!"... Though sometimes I can read just fine! How about you guys?
You guys have a fabulous weekend :)
Until next time...
Friday, March 16, 2012
Hey ladies! Warning: This is going to be an unorganized post! It's Hannah here and I'm not even sure if it's by week to post, but thank you Rhianne, for reminding me :)
I am not doing well at the moment so I didn't read through the posts...Sorry ladies, but I am going to do my best on the questions below that I found.
Right now I am still kind of in a cycle, able to do things for a few days, then crash. And I feel like I am having like IBS or something... So, I've been having some new symptoms and some old ones coming back in other areas, such as certain types of headaches, etc. But thankfully the returning headaches don't seem as bad as before.
I have just been a busy bee... I've been studying scriptures, doing lessons from the online school I'm in and then spending my other time if I'm feeling well sitting outside or cleaning, or going to some stores, etc. and if I'm not feeling well, I've been spending it playing video games, being on my ipad or watching movies.
I do have good news though, I was able to go to one of my friends's birthday parties! I had two friends with parties two days in a row, I missed one from being too sick and made it to the second one (though I wasn't sure how long I'd last) and I was able to be there for around two hours. It was amazing to me... I basically sat on the floor the whole time with another friend watching them play wii, but it was so nice and I was excited I could be there for that friend and her celebration, even though I am disappointed I missed my other friend's celebration, but I get to see her this weekend, so it's all good! :). So ladies, especially for those of us who are really sick... There is hope! This time last year I was a couple weeks out of the hospital...So, there is progress to be made!
I have also "out-grown" my cardiologist, however, I am seeing a neurologist and a sleep neurologist? I am not sure what she is called- but basically the sleep specialist (there we go), who I see at a diferent pediatric institute than my cardiologist are referring me to another pediatric cardiologist, which is very stressful for me- because though I feel I am beyond the expertise of the cardiologist (who was unique in his kindness and compassion) I've been seeing- I am nervous to be starting a new journey of a doctor with new ways of treatment, etc. But I'll be trusting God to take care of me like He continually has.
Questions...
(I hope I got these right!)
Michelle R: Do y'all know any boys like us? Not that I can think of, however, a while back, my mom had a phone conversation with someone we knew from somewhere from a while back before that (I hope this is making sense) and her son I think it was, had POTS or some form of Dysautonomia, but I'm pretty sure it was POTS.
Rhianne: What's your favourite "I'll get through this" song? Wow, I don't know if I can pick just one...There have been many but I think my most current one is probably I'll Watch You Dance by Holly Starr.
Emily: (I didn't get to read your post but I'm excited to see you posted on here!) Has anyone ever considered getting a service dog? Yes! There was actually a time when I thought I was getting one, but it fell through. I have since looked into it, but am waiting until I am in a bigger space because I have two small dogs. One an old man and one about to be a year old, and our older dog (who isn't mine) likes to camp with me a lot so I'm not sure I'd have any room left (I am sure I sound like an animal hoarder, lol! I'd love to see if it's possible to get instead of a service dog... a service pig! Yes, you read that right!).
Cheyanne: How many of you have joint pain on a daily basis? And are you double jointed? When I am off an SSRI- I get a lot of body pain. Some joint pain, but to say I get specifically joint pain on a daily basis I don't think would be accurate. Still, I get stiff, and I get weird pain and pain is weird places like my sternum, but joint pain is more "occasional." I am not double jointed/ hypermobile, but I have possible Fibro.
Logan: (I hope I have the right person who asked this question!) Do you have any bad habits? I again didn't read through posts to see the context for all the questions, so I'm not sure if this is in regards to health or in general, but yes! I suppose a bad habit of mine is not sleeping in the same place all the time. I go some nights sleeping in my recliner, and some nights sleeping in my bed- which isn't good to train your body to associate a certain place with sleep, but I spent (as most of us have) so much time in my bed for a couple of years, it just doesn't seem as comfy of a place anymore.
I hope all of you ladies, and readers, have a great weekend and week ahead!
Until Next Time...
~Hannah
I am not doing well at the moment so I didn't read through the posts...Sorry ladies, but I am going to do my best on the questions below that I found.
Right now I am still kind of in a cycle, able to do things for a few days, then crash. And I feel like I am having like IBS or something... So, I've been having some new symptoms and some old ones coming back in other areas, such as certain types of headaches, etc. But thankfully the returning headaches don't seem as bad as before.
I have just been a busy bee... I've been studying scriptures, doing lessons from the online school I'm in and then spending my other time if I'm feeling well sitting outside or cleaning, or going to some stores, etc. and if I'm not feeling well, I've been spending it playing video games, being on my ipad or watching movies.
I do have good news though, I was able to go to one of my friends's birthday parties! I had two friends with parties two days in a row, I missed one from being too sick and made it to the second one (though I wasn't sure how long I'd last) and I was able to be there for around two hours. It was amazing to me... I basically sat on the floor the whole time with another friend watching them play wii, but it was so nice and I was excited I could be there for that friend and her celebration, even though I am disappointed I missed my other friend's celebration, but I get to see her this weekend, so it's all good! :). So ladies, especially for those of us who are really sick... There is hope! This time last year I was a couple weeks out of the hospital...So, there is progress to be made!
I have also "out-grown" my cardiologist, however, I am seeing a neurologist and a sleep neurologist? I am not sure what she is called- but basically the sleep specialist (there we go), who I see at a diferent pediatric institute than my cardiologist are referring me to another pediatric cardiologist, which is very stressful for me- because though I feel I am beyond the expertise of the cardiologist (who was unique in his kindness and compassion) I've been seeing- I am nervous to be starting a new journey of a doctor with new ways of treatment, etc. But I'll be trusting God to take care of me like He continually has.
Questions...
(I hope I got these right!)
Michelle R: Do y'all know any boys like us? Not that I can think of, however, a while back, my mom had a phone conversation with someone we knew from somewhere from a while back before that (I hope this is making sense) and her son I think it was, had POTS or some form of Dysautonomia, but I'm pretty sure it was POTS.
Rhianne: What's your favourite "I'll get through this" song? Wow, I don't know if I can pick just one...There have been many but I think my most current one is probably I'll Watch You Dance by Holly Starr.
Emily: (I didn't get to read your post but I'm excited to see you posted on here!) Has anyone ever considered getting a service dog? Yes! There was actually a time when I thought I was getting one, but it fell through. I have since looked into it, but am waiting until I am in a bigger space because I have two small dogs. One an old man and one about to be a year old, and our older dog (who isn't mine) likes to camp with me a lot so I'm not sure I'd have any room left (I am sure I sound like an animal hoarder, lol! I'd love to see if it's possible to get instead of a service dog... a service pig! Yes, you read that right!).
Cheyanne: How many of you have joint pain on a daily basis? And are you double jointed? When I am off an SSRI- I get a lot of body pain. Some joint pain, but to say I get specifically joint pain on a daily basis I don't think would be accurate. Still, I get stiff, and I get weird pain and pain is weird places like my sternum, but joint pain is more "occasional." I am not double jointed/ hypermobile, but I have possible Fibro.
Logan: (I hope I have the right person who asked this question!) Do you have any bad habits? I again didn't read through posts to see the context for all the questions, so I'm not sure if this is in regards to health or in general, but yes! I suppose a bad habit of mine is not sleeping in the same place all the time. I go some nights sleeping in my recliner, and some nights sleeping in my bed- which isn't good to train your body to associate a certain place with sleep, but I spent (as most of us have) so much time in my bed for a couple of years, it just doesn't seem as comfy of a place anymore.
I hope all of you ladies, and readers, have a great weekend and week ahead!
Until Next Time...
~Hannah
Friday, February 17, 2012
Me=Dizzy!
Hey guys! I am terribly sorry but I didn't really read through your posts (besides what I had read earlier this week) because I've got me a case of vertigo.
I've been getting sick a lot lately. Aside from being able to do activity for a few days then crashing, I keep getting a virus, over and over again, I think I've had it two to three times now. I know it's a virus because my mom keeps getting it, my dad now has it and her daycare kids keep getting it. So maybe I should lock myself in my room with my windows open to let all the nasty germs out until everyone quits getting sick- haha.
This sleep schedule stuff is really messing with my immune system I think. I notice that when I do not allow myself to sleep in to make up for lost sleep the night before- or when my insomnia is just outrageous for me- I get sick. I can usually know right around the time too, just based on how long I haven't been sleeping 'good'. And that concerns me with this sleep stuff because I am allowing myself to sleep when sick, but then I have to almost start all over- and then I get sick again, and the cycle continues haha.
So my question for you guys is; Any advice for trying to form a good sleeping habit, without 'killing' yourself in the process?
I know, I had a short update- sorry, hopefully next time I'll feel up to a better post :).
Questions;
Miranda: Do you have a normal sleeping schedule? No- haha. I am *trying* really hard to get into one though, a goal would be to be able to be asleep by 9 or 10 and up by 8 or 9.
Cheyanne: Do you all have any of the sweating issues and if so what kind of deodorant do you use?
I am going to have such an unladylike answer to this question! YES! I am constantly wiping sweat from my underarms and complaining about the foul odor. It's not even like a normal odor either- again, I know this is so unladylike. I am into using natural things- so I don't use antiperspirants, or things with aluminum I believe it is? I use either homemade deodorant (hoping to try a recipe Logan shared with me!) or as natural as I can get- like Tom's brand- however, it doesn't stop the sweating, it just is an attempt to cover the odor.
Logan: I am totally fine with it if you ask the woman from your Church about joining our blog :).
How do you cope with bad memory? What tricks do you do to help yourself memorize things? I wish I had a good answer! Honestly, I think the biggest thing is exercising my brain- reading even when I forget what the last page said (even the last sentence) and doing things that make me think- Like right now with my worksheets, they have questions, and I have to look back over what I read to find most of the answers, that is a good exercise for me. Other things are memory games online. And if it's information you are trying to remember- like a history lesson, a study, etc. I am a note-card fanatic. I am trying to memorize the ten commandments- and eventually the reference to each and the complete verse to each- so they are posted on note cards on my wall in front of my recliner.
I know you are into Bible studies, etc. So some good websites where you can read some information packed pages, without having to sit down and read a whole book are; gotquestions.org, and RZIM.com, or RZIM might be .org, I cannot remember! My brain tonight- Ahhh! I think Beth Moore even has some on her website, which I can't remember either- but google should help you find it if you're interested!
One more thing- I Highlight, Highlight, Highlight, Mark, Mark, Mark... Whenever I am reading something :).
Rhianne: Do you have a scale you rate your days on? I don't but I LOVE that idea- might be a good help to journal it too, since Doctors ask a lot for journals of symptoms!
Analyze your health in a holistic way (mental, physical, social, spiritual). I am not entirely sure how to answer this question! I do not cling to holistic medicine, however, I do like that with holistic treatment, more natural remedies are used. I am a follower of Jesus, and I strive to be healthy in all of these ways, spiritually- by clinging to God, physically, by taking care of the temple God gave me (my body) and I feel I could improve in this area by eating more vitamin and nutrition packed foods. Socially, I am pretty isolated right now with my health- however, I am learning to be more social with my illness by allowing friends to come see me even on my bad days (and it seems like I keep making "friends" in random stores!) though I do have my social anxieties. Mentally, I feel this intertwines with how I am in my relationship with Christ- through my relationship with God, I am working on my mental hang-ups! I hope this was an understandable answer with how my brain is functioning tonight :).
Until next time...
Feel good!!!!
~Hannah
I've been getting sick a lot lately. Aside from being able to do activity for a few days then crashing, I keep getting a virus, over and over again, I think I've had it two to three times now. I know it's a virus because my mom keeps getting it, my dad now has it and her daycare kids keep getting it. So maybe I should lock myself in my room with my windows open to let all the nasty germs out until everyone quits getting sick- haha.
This sleep schedule stuff is really messing with my immune system I think. I notice that when I do not allow myself to sleep in to make up for lost sleep the night before- or when my insomnia is just outrageous for me- I get sick. I can usually know right around the time too, just based on how long I haven't been sleeping 'good'. And that concerns me with this sleep stuff because I am allowing myself to sleep when sick, but then I have to almost start all over- and then I get sick again, and the cycle continues haha.
So my question for you guys is; Any advice for trying to form a good sleeping habit, without 'killing' yourself in the process?
I know, I had a short update- sorry, hopefully next time I'll feel up to a better post :).
Questions;
Miranda: Do you have a normal sleeping schedule? No- haha. I am *trying* really hard to get into one though, a goal would be to be able to be asleep by 9 or 10 and up by 8 or 9.
Cheyanne: Do you all have any of the sweating issues and if so what kind of deodorant do you use?
I am going to have such an unladylike answer to this question! YES! I am constantly wiping sweat from my underarms and complaining about the foul odor. It's not even like a normal odor either- again, I know this is so unladylike. I am into using natural things- so I don't use antiperspirants, or things with aluminum I believe it is? I use either homemade deodorant (hoping to try a recipe Logan shared with me!) or as natural as I can get- like Tom's brand- however, it doesn't stop the sweating, it just is an attempt to cover the odor.
Logan: I am totally fine with it if you ask the woman from your Church about joining our blog :).
How do you cope with bad memory? What tricks do you do to help yourself memorize things? I wish I had a good answer! Honestly, I think the biggest thing is exercising my brain- reading even when I forget what the last page said (even the last sentence) and doing things that make me think- Like right now with my worksheets, they have questions, and I have to look back over what I read to find most of the answers, that is a good exercise for me. Other things are memory games online. And if it's information you are trying to remember- like a history lesson, a study, etc. I am a note-card fanatic. I am trying to memorize the ten commandments- and eventually the reference to each and the complete verse to each- so they are posted on note cards on my wall in front of my recliner.
I know you are into Bible studies, etc. So some good websites where you can read some information packed pages, without having to sit down and read a whole book are; gotquestions.org, and RZIM.com, or RZIM might be .org, I cannot remember! My brain tonight- Ahhh! I think Beth Moore even has some on her website, which I can't remember either- but google should help you find it if you're interested!
One more thing- I Highlight, Highlight, Highlight, Mark, Mark, Mark... Whenever I am reading something :).
Rhianne: Do you have a scale you rate your days on? I don't but I LOVE that idea- might be a good help to journal it too, since Doctors ask a lot for journals of symptoms!
Analyze your health in a holistic way (mental, physical, social, spiritual). I am not entirely sure how to answer this question! I do not cling to holistic medicine, however, I do like that with holistic treatment, more natural remedies are used. I am a follower of Jesus, and I strive to be healthy in all of these ways, spiritually- by clinging to God, physically, by taking care of the temple God gave me (my body) and I feel I could improve in this area by eating more vitamin and nutrition packed foods. Socially, I am pretty isolated right now with my health- however, I am learning to be more social with my illness by allowing friends to come see me even on my bad days (and it seems like I keep making "friends" in random stores!) though I do have my social anxieties. Mentally, I feel this intertwines with how I am in my relationship with Christ- through my relationship with God, I am working on my mental hang-ups! I hope this was an understandable answer with how my brain is functioning tonight :).
Until next time...
Feel good!!!!
~Hannah
Friday, February 3, 2012
Happy Friday!
Hey peeps! Hannah here,
There are some new things happening for me! I am enrolled in the online School of Biblical Evangelism (see livingwaters.com), If you've ever seen Way of the Master with Kirk Cameron and Ray Comfort, you may know what I am talking about... it has no deadlines, it's not accredited, but it's great. It teaches you how to evangelize like Jesus did, and my goal in life is ministry, so I cannot even begin to express my excitement :).
Aside from that, I don't remember if I posted about me seeing the sleep specialist, but I am suppose to start waking up earlier (and keeping a sleep diary) so I get tired enough I actually sleep at night. I am also suppose to try melatonin, my nurse called me and told me there was no evidence that they found that it should lower blood pressure, and that I should check with my cardiologist, I explained that there isn't much known on POTS itself, that I learned this from POTSy people. For me, I'm definitely not against taking it, I take it once every few months when I'm in a total crash from not sleeping, but it gives me a hangover and I usually only take it when I have a good blood pressure. But, I am going to try taking it on a consistent basis and see what happens :).
Otherwise, I am just hanging in there. I am in a bit of a flare right now, yesterday and today I've been waking up exhausted with pain and being POTSy. But there is still improvement from where I was this time last year, so- to count those blessings!
Question Time :)
Michelle K : I hope work and school is going well for you hun :) How inspiring that you are trying again! I am also sad to hear that you vomited after a 7-day free streak of it! Your questions were; Do you suffer from abdominal pain and if so, is it something that's been investigated, or is it just a POTS thing? I do, usually only when I am having issues with digestion. I find it is worse when I am dehydrated, otherwise, my biggest issues now (though in the past I had a lot more issues in that department) are acid reflux and esophageal discomfort, though there is some improvement with diet changes (like being gluten free) as well as when I can get nexium samples since our insurance won't cover it. Do you find yourself tempted to take on way too much even though you know realistically you shouldn't be doing so much? Yes! I usually start doing something with a goal and over-do it and then get too sick to complete the goal.
Erin: Hey, that's great that you are now getting your injections! Keep us posted! I am just realizing I may have missed one of your posts, I am sorry! What do you all take for colds (minus antihistamines and decongestants you can't take with your medication)? I haven't gotten a bad cold recently to really remember, but vaporizing machines are great, menthol rubs, teas, juices, honey, lemon, etc. I also love spraying eucalyptus oil for different purposes, but that's one it could serve! Also, you can try putting the menthol rub on your feet to help with a cough. I hope you get to feeling better!
Rhianne: You are back in school, yay! I am sorry though that you are having a difficult time physically! I feel for you! Your questions, How do you stop yourself from overdoing it? I am not sure I've figured this one out yet! Sometimes I just say, okay, I need to stop or I'm going to make myself sick. But really, I am not sure! Do your legs feel itchy when you have blood pooling? Yes! Sometimes that's how I know I'm having it, the itch is like a warning to me.
Cheyanne: Going gluten free at first is horrible! I agree! It wasn't until recently I started enjoying things again (in gluten free form) like spaghetti, donuts, stir fries, etc. You should send me a message, I might be able to throw some ideas your way. I still eat at McDonalds by the way, as far as I know their fries are gluten free (not positive) and I may eat a chicken sandwich or burger with no bun but with the fixings. Your questions, Does being on your period set your POTS off? Yes! My menstrual cycle definitely worsens my POTS, seems like it makes each symptom more worse. Especially stomach upset and dizziness, headache, which are probably the most annoying and more difficult. What's the highest heart rate you've gotten that you have been aware of? Honestly, I don't know. I have such poor memory I cannot remember. I know within the past few months, it getting into the 150's was scary for me simce it would happen when I walked. Also, my breastbone doesn't protrude, I think it's good that you are making sure it isn't Marfans and not just EDS characteristics.
That is it for the questions, and my question is, What is your favorite, "I'm sick but I need out of the house," activity? mine is probably going through a drive-thru or going in my wheelchair to a small store.
Have a lovely weekend :)
~Hannah
There are some new things happening for me! I am enrolled in the online School of Biblical Evangelism (see livingwaters.com), If you've ever seen Way of the Master with Kirk Cameron and Ray Comfort, you may know what I am talking about... it has no deadlines, it's not accredited, but it's great. It teaches you how to evangelize like Jesus did, and my goal in life is ministry, so I cannot even begin to express my excitement :).
Aside from that, I don't remember if I posted about me seeing the sleep specialist, but I am suppose to start waking up earlier (and keeping a sleep diary) so I get tired enough I actually sleep at night. I am also suppose to try melatonin, my nurse called me and told me there was no evidence that they found that it should lower blood pressure, and that I should check with my cardiologist, I explained that there isn't much known on POTS itself, that I learned this from POTSy people. For me, I'm definitely not against taking it, I take it once every few months when I'm in a total crash from not sleeping, but it gives me a hangover and I usually only take it when I have a good blood pressure. But, I am going to try taking it on a consistent basis and see what happens :).
Otherwise, I am just hanging in there. I am in a bit of a flare right now, yesterday and today I've been waking up exhausted with pain and being POTSy. But there is still improvement from where I was this time last year, so- to count those blessings!
Question Time :)
Michelle K : I hope work and school is going well for you hun :) How inspiring that you are trying again! I am also sad to hear that you vomited after a 7-day free streak of it! Your questions were; Do you suffer from abdominal pain and if so, is it something that's been investigated, or is it just a POTS thing? I do, usually only when I am having issues with digestion. I find it is worse when I am dehydrated, otherwise, my biggest issues now (though in the past I had a lot more issues in that department) are acid reflux and esophageal discomfort, though there is some improvement with diet changes (like being gluten free) as well as when I can get nexium samples since our insurance won't cover it. Do you find yourself tempted to take on way too much even though you know realistically you shouldn't be doing so much? Yes! I usually start doing something with a goal and over-do it and then get too sick to complete the goal.
Erin: Hey, that's great that you are now getting your injections! Keep us posted! I am just realizing I may have missed one of your posts, I am sorry! What do you all take for colds (minus antihistamines and decongestants you can't take with your medication)? I haven't gotten a bad cold recently to really remember, but vaporizing machines are great, menthol rubs, teas, juices, honey, lemon, etc. I also love spraying eucalyptus oil for different purposes, but that's one it could serve! Also, you can try putting the menthol rub on your feet to help with a cough. I hope you get to feeling better!
Rhianne: You are back in school, yay! I am sorry though that you are having a difficult time physically! I feel for you! Your questions, How do you stop yourself from overdoing it? I am not sure I've figured this one out yet! Sometimes I just say, okay, I need to stop or I'm going to make myself sick. But really, I am not sure! Do your legs feel itchy when you have blood pooling? Yes! Sometimes that's how I know I'm having it, the itch is like a warning to me.
Cheyanne: Going gluten free at first is horrible! I agree! It wasn't until recently I started enjoying things again (in gluten free form) like spaghetti, donuts, stir fries, etc. You should send me a message, I might be able to throw some ideas your way. I still eat at McDonalds by the way, as far as I know their fries are gluten free (not positive) and I may eat a chicken sandwich or burger with no bun but with the fixings. Your questions, Does being on your period set your POTS off? Yes! My menstrual cycle definitely worsens my POTS, seems like it makes each symptom more worse. Especially stomach upset and dizziness, headache, which are probably the most annoying and more difficult. What's the highest heart rate you've gotten that you have been aware of? Honestly, I don't know. I have such poor memory I cannot remember. I know within the past few months, it getting into the 150's was scary for me simce it would happen when I walked. Also, my breastbone doesn't protrude, I think it's good that you are making sure it isn't Marfans and not just EDS characteristics.
That is it for the questions, and my question is, What is your favorite, "I'm sick but I need out of the house," activity? mine is probably going through a drive-thru or going in my wheelchair to a small store.
Have a lovely weekend :)
~Hannah
Friday, January 20, 2012
Your Every Other Friday Host :)
Hannah here, Hey lovely people!
I feel like I can't quite remember this week- Ha! I think I mostly hung around in my recliner, crocheted and watched Way of the Master and other videos on youtube. I'm expanding my brain's horizons ;-)
Ever since I spent a whole day cleaning in my basement, was it two weeks ago now? I feel like I am still in recovery from that. I've been having more body pain than usual, more painful headaches, but it's probably sinuses because everyone here seems to complain of a headache-lol- and some GI weirdness.
But I'll go ahead and answer the questions;
Erin: What are all of you girls allergic to? Foods, outside and all? Do you avoid EVERYTHING that you are sensitive to or what is your coping mechanism for allergies? Medicine, etc? Haha, I'm wondering how to answer this question because... I am allergic to A LOT outside plus dust, cockroaches, etc. Food wise, I reacted badly to iodine during a CAT scan as a child so I am suppose to avoid seafood, however, I had like half a shrimp around Christmas and nothing happened from it unless of course I couldn't discriminate it from my other symptoms. I believe I have a sensitivity to gluten because when I eat it, it causes me to have pain in my esophagus/ increased acid reflux symptoms and I think it contributes to other gastrointestinal problems. As far as what I do; I used to be on Singular but it caused my limbs to feel numb so I took myself off of it (Caution to the readers: It's not the wisest to take yourself off a medication depending on what it is, so be sure to check with your doctor and use caution), otherwise, I just try to avoid things that make me feel bad and I occasionally take Clariton. Also, the fear of vomiting must be pretty common, I always thought I was crazy because of how afraid of it I am and have been- lol.
Rhianne: What is your favorite POTS/Dysautonomia video? Y'know, I am not sure- but I may just second the video you posted (plus my pic-a-ture is in it:).
What is your family's approach to alcohol? My parents don't drink that I know of, my Dad is willing to let us try it but does not necessarily advocate it. Of course, both of my siblings are adults in their twenties so they decide for themselves. I know both of my parents are against getting drunk. For personal convictions I don't want to try alcohol besides for medicinal uses, but aside from that- I am terrified of it because of my POTS...Oh, just thinking about what it could do to my POTSy body feels dreadful! That's interesting though that your body didn't have a reaction to it! I am so surprised!
Also, about your running, I seem to be the same way with my biking on the recumbent bike. One day I may be able to bike like crazy and the next day I have to force myself to even get to a quarter of a mile. I think it's how our body's adjusts or recovers or something.
That's so cool that your mom stayed by Steve Irwin's zoo! I really need to come to Australia, I keep telling my parents how much I want too :).
Cheyanne: Happy Late Birthday Girl! I hope you enjoyed your laid-back day :). Your question(s), Do you hyperventilate a lot? Honestly, I'm not sure that I understand what hyperventilation is. I do have random periods of trouble breathing that can be mixed with tachycardia but I am not sure if that is hyperventilation or not. Sorry! And, How many of you are eating gluten-free and when you went gluten-free did it improve your symptoms? I am eating gluten free :) My gastrointestinal symptoms definitely improved, and when my GI issues are lessened, it seems to have a domino affect :).
Congratulations on getting your permit, thats so exciting! :) I haven't gotten mine yet basically because I am also afraid to drive... I am afraid because I brown out- have issues with visual perception, etc. but I know being a POTSy and driving is POSSIBLE, let's just look at Erin for example, Erin, you can be our inspiration for attempting to drive! :).
Michelle R: Michelle, you didn't have a question but turning 18 is so exciting! :) Also, that's stinky that you are concerned with your lyrica. I know especially as females it's easy for us to get concerned with our physical appearance and weight, but girl, if you are eating healthy (and it seems you are), don't worry, your body will be healthy (putting Dysautonomia aside, of course lol) :). And you are incredibly gorgeous :).
Miranda: Do you procrastinate? Yes! And it is a downfall on many days! Aside from when my health cannot be my excuse, sometimes I feel like I procrastinate simply because I am lacking in the energy department! But even when my energy wasn't an issue, I did indeed, procrastinate. That's something I am working on.
What do you guys do for joint pain/stiffness? Ah, I wish I had a good answer, my SSRI definitely helps, but aside from that- really the only thing I do is use home-made rubs with essential oils that have menthol qualities like Eucalyptus, Rosemary, etc. Of course, since this is the internet, I want to advise anyone new to the use of essential oils that; they are for external (don't eat them!) use only (I sound like I'm on an advertisement) and they need to be diluted in carrier oils such as olive oil or almond oil, etc.
Alright lovely ladies and fabulous readers, have a great weekend and keep smiling :)
I just wanted to add; since Michelle R and I are doing every other week together, if you guys would like to keep up with my Dysautonomic self, feel free to check out my blog!; livingwithdysautonomia.blogspot.com
Until Next time :)
Hasta Luego!
I feel like I can't quite remember this week- Ha! I think I mostly hung around in my recliner, crocheted and watched Way of the Master and other videos on youtube. I'm expanding my brain's horizons ;-)
Ever since I spent a whole day cleaning in my basement, was it two weeks ago now? I feel like I am still in recovery from that. I've been having more body pain than usual, more painful headaches, but it's probably sinuses because everyone here seems to complain of a headache-lol- and some GI weirdness.
But I'll go ahead and answer the questions;
Erin: What are all of you girls allergic to? Foods, outside and all? Do you avoid EVERYTHING that you are sensitive to or what is your coping mechanism for allergies? Medicine, etc? Haha, I'm wondering how to answer this question because... I am allergic to A LOT outside plus dust, cockroaches, etc. Food wise, I reacted badly to iodine during a CAT scan as a child so I am suppose to avoid seafood, however, I had like half a shrimp around Christmas and nothing happened from it unless of course I couldn't discriminate it from my other symptoms. I believe I have a sensitivity to gluten because when I eat it, it causes me to have pain in my esophagus/ increased acid reflux symptoms and I think it contributes to other gastrointestinal problems. As far as what I do; I used to be on Singular but it caused my limbs to feel numb so I took myself off of it (Caution to the readers: It's not the wisest to take yourself off a medication depending on what it is, so be sure to check with your doctor and use caution), otherwise, I just try to avoid things that make me feel bad and I occasionally take Clariton. Also, the fear of vomiting must be pretty common, I always thought I was crazy because of how afraid of it I am and have been- lol.
Rhianne: What is your favorite POTS/Dysautonomia video? Y'know, I am not sure- but I may just second the video you posted (plus my pic-a-ture is in it:).
What is your family's approach to alcohol? My parents don't drink that I know of, my Dad is willing to let us try it but does not necessarily advocate it. Of course, both of my siblings are adults in their twenties so they decide for themselves. I know both of my parents are against getting drunk. For personal convictions I don't want to try alcohol besides for medicinal uses, but aside from that- I am terrified of it because of my POTS...Oh, just thinking about what it could do to my POTSy body feels dreadful! That's interesting though that your body didn't have a reaction to it! I am so surprised!
Also, about your running, I seem to be the same way with my biking on the recumbent bike. One day I may be able to bike like crazy and the next day I have to force myself to even get to a quarter of a mile. I think it's how our body's adjusts or recovers or something.
That's so cool that your mom stayed by Steve Irwin's zoo! I really need to come to Australia, I keep telling my parents how much I want too :).
Cheyanne: Happy Late Birthday Girl! I hope you enjoyed your laid-back day :). Your question(s), Do you hyperventilate a lot? Honestly, I'm not sure that I understand what hyperventilation is. I do have random periods of trouble breathing that can be mixed with tachycardia but I am not sure if that is hyperventilation or not. Sorry! And, How many of you are eating gluten-free and when you went gluten-free did it improve your symptoms? I am eating gluten free :) My gastrointestinal symptoms definitely improved, and when my GI issues are lessened, it seems to have a domino affect :).
Congratulations on getting your permit, thats so exciting! :) I haven't gotten mine yet basically because I am also afraid to drive... I am afraid because I brown out- have issues with visual perception, etc. but I know being a POTSy and driving is POSSIBLE, let's just look at Erin for example, Erin, you can be our inspiration for attempting to drive! :).
Michelle R: Michelle, you didn't have a question but turning 18 is so exciting! :) Also, that's stinky that you are concerned with your lyrica. I know especially as females it's easy for us to get concerned with our physical appearance and weight, but girl, if you are eating healthy (and it seems you are), don't worry, your body will be healthy (putting Dysautonomia aside, of course lol) :). And you are incredibly gorgeous :).
Miranda: Do you procrastinate? Yes! And it is a downfall on many days! Aside from when my health cannot be my excuse, sometimes I feel like I procrastinate simply because I am lacking in the energy department! But even when my energy wasn't an issue, I did indeed, procrastinate. That's something I am working on.
What do you guys do for joint pain/stiffness? Ah, I wish I had a good answer, my SSRI definitely helps, but aside from that- really the only thing I do is use home-made rubs with essential oils that have menthol qualities like Eucalyptus, Rosemary, etc. Of course, since this is the internet, I want to advise anyone new to the use of essential oils that; they are for external (don't eat them!) use only (I sound like I'm on an advertisement) and they need to be diluted in carrier oils such as olive oil or almond oil, etc.
Alright lovely ladies and fabulous readers, have a great weekend and keep smiling :)
I just wanted to add; since Michelle R and I are doing every other week together, if you guys would like to keep up with my Dysautonomic self, feel free to check out my blog!; livingwithdysautonomia.blogspot.com
Until Next time :)
Hasta Luego!
Friday, January 6, 2012
It's 2012!
Hey guys, its your every other Friday host, Hannah! I forgot the Friday before Christmas to post, hard to believe right?
I glanced through the other posts, I'm sick tonight so I didn't read through them too well, sorry guys.
My Christmas was good! I was able to do quite a bit the Friday before Christmas (went shopping with my mom then was out late that night), then we had company Christmas Eve morning, then I went to my uncle's, then to my grandfather's. On Christmas day I went to see my grandmother in the nursing home (she has Alzheimer's) and then to my cousin's Christmas dinner, and then to my grandfather's again. I was shocked that I was able to do so much!
New Years day I wasn't feeling so well, but my grandparents on my dad's side came to visit and that was very fun, we celebrated our Christmas with them then, too :).
Today, I am not doing well, I have a stomach virus so I'm like, Bleeeeh. It's so weird though, I almost never throw-up. I'll get the dry-heaves but I won't throw up. I usually end up wishing I could vomit just to get some relief but yet I'm terrified of it, because I'm worried if I do, then my Dysautonomia will be like, Hey! Let's make Hannah throw up all the time! I suppose that is my question, I know Logan and Michelle K have issues with vomiting, and Rhianne at times, but does anyone ever feel like they can't vomit when they are sick? It's a blessing and a frustration all at the same time- because the sickness takes forever to leave then haha.
Okay, question time, I hope I didn't miss any! There didn't seem to be too many from too many girls! But I am going back a couple weeks <3.
Rhianne: What did you get for Christmas? I got a recumbent bike :) I can go slow on it for about a half hour before I start feeling sick. I made it to two miles one day in about thirty minutes! I was so excited! I also got some clothes, curtains from my sister, and some survival stuff (I think I might be a borderline survival nerd. If I could, I would love to go put it into practice). And some other odds and ends. I am truly BLESSED!
What is your New Year's resolution? To be honest, I don't have one! I've thought about it but really, I always forget them- but in general, I strive for a deeper relationship with the God I serve, and more health! What is your favorite summer activity? Hmmm...Before getting sick, it would totally be swimming. Since getting sick, just sitting outside and watching the kid's play. :).
Miranda: Do you ever feel like there is a subwoofer in your body? To make sure I am understanding your question, I think you mean like vibrating or pulsating through the body...And yes I do get that, especially when I am dehydrated more than usual. Do you have any New Year's traditions? Before I was too sick, I'd always have friends over, now- not really anything other than staying up to watch the ball drop :). Do you get the hiccups a lot? Only when my acid reflux is bad. I wish I had a remedy to give you other than treating your acid reflux the best you can. There are home-remedies for that if you would like me to dig into my books and send you some, I know you, just like me are having a difficult time having your acid reflux adequately treated. <3.
Cheyanne: What is a fun way to spend your birthday when you have a chronic illness? For my 18th birthday, I just had two close friends over for lunch, and we were on the couch the whole time. I know when you are younger, it is harder to settle for those kinds of birthdays. I have had some bad experiences with parties and my sickness personally, so I am hesitant to have parties BUT everyone's different with how they tolerate things. If you think you can handle a sleepover, you could have a few understanding friends over. Or have a bunch of friends over but keep it structured so that people have to leave within a certain time, that way you can have a cut off. For me, I can usually hang out with people for about 1-2 hours before I start getting too worn out. An idea there is to go out to lunch or have a Birthday movie, etc. etc. Be creative though, and do what you feel is most comfortable for you, and don't feel bad for what you cannot do. <3.
Also, We should totally be "BIKE BUDDIES!" that's so cool that you got a stationary bike! and you go girl with the speediness, that's awesome :).
I see that some of you ladies are exercising more and I am proud of you all. I know it's hard to push through symptoms to do something that is suppose to help those symptoms in the long run.
I hope ALL of you ladies are doing well <3
Have a GREAT weekend :)
~Hannah
I glanced through the other posts, I'm sick tonight so I didn't read through them too well, sorry guys.
My Christmas was good! I was able to do quite a bit the Friday before Christmas (went shopping with my mom then was out late that night), then we had company Christmas Eve morning, then I went to my uncle's, then to my grandfather's. On Christmas day I went to see my grandmother in the nursing home (she has Alzheimer's) and then to my cousin's Christmas dinner, and then to my grandfather's again. I was shocked that I was able to do so much!
New Years day I wasn't feeling so well, but my grandparents on my dad's side came to visit and that was very fun, we celebrated our Christmas with them then, too :).
Today, I am not doing well, I have a stomach virus so I'm like, Bleeeeh. It's so weird though, I almost never throw-up. I'll get the dry-heaves but I won't throw up. I usually end up wishing I could vomit just to get some relief but yet I'm terrified of it, because I'm worried if I do, then my Dysautonomia will be like, Hey! Let's make Hannah throw up all the time! I suppose that is my question, I know Logan and Michelle K have issues with vomiting, and Rhianne at times, but does anyone ever feel like they can't vomit when they are sick? It's a blessing and a frustration all at the same time- because the sickness takes forever to leave then haha.
Okay, question time, I hope I didn't miss any! There didn't seem to be too many from too many girls! But I am going back a couple weeks <3.
Rhianne: What did you get for Christmas? I got a recumbent bike :) I can go slow on it for about a half hour before I start feeling sick. I made it to two miles one day in about thirty minutes! I was so excited! I also got some clothes, curtains from my sister, and some survival stuff (I think I might be a borderline survival nerd. If I could, I would love to go put it into practice). And some other odds and ends. I am truly BLESSED!
What is your New Year's resolution? To be honest, I don't have one! I've thought about it but really, I always forget them- but in general, I strive for a deeper relationship with the God I serve, and more health! What is your favorite summer activity? Hmmm...Before getting sick, it would totally be swimming. Since getting sick, just sitting outside and watching the kid's play. :).
Miranda: Do you ever feel like there is a subwoofer in your body? To make sure I am understanding your question, I think you mean like vibrating or pulsating through the body...And yes I do get that, especially when I am dehydrated more than usual. Do you have any New Year's traditions? Before I was too sick, I'd always have friends over, now- not really anything other than staying up to watch the ball drop :). Do you get the hiccups a lot? Only when my acid reflux is bad. I wish I had a remedy to give you other than treating your acid reflux the best you can. There are home-remedies for that if you would like me to dig into my books and send you some, I know you, just like me are having a difficult time having your acid reflux adequately treated. <3.
Cheyanne: What is a fun way to spend your birthday when you have a chronic illness? For my 18th birthday, I just had two close friends over for lunch, and we were on the couch the whole time. I know when you are younger, it is harder to settle for those kinds of birthdays. I have had some bad experiences with parties and my sickness personally, so I am hesitant to have parties BUT everyone's different with how they tolerate things. If you think you can handle a sleepover, you could have a few understanding friends over. Or have a bunch of friends over but keep it structured so that people have to leave within a certain time, that way you can have a cut off. For me, I can usually hang out with people for about 1-2 hours before I start getting too worn out. An idea there is to go out to lunch or have a Birthday movie, etc. etc. Be creative though, and do what you feel is most comfortable for you, and don't feel bad for what you cannot do. <3.
Also, We should totally be "BIKE BUDDIES!" that's so cool that you got a stationary bike! and you go girl with the speediness, that's awesome :).
I see that some of you ladies are exercising more and I am proud of you all. I know it's hard to push through symptoms to do something that is suppose to help those symptoms in the long run.
I hope ALL of you ladies are doing well <3
Have a GREAT weekend :)
~Hannah
Friday, September 9, 2011
Thank You, Cheyanne for Reminding Me to Post!
So, I've been forgetting again to post. I remember like the day after, sorry guys, haha.
Today, was bad symptom wise... I had a cardiologist appointment and got sick before with my GI, but went anyway thinking it was like my normal POTS GI issues and that I would just fight through it...And cardio appointments really aren't ones to skip! But, I ended up holding a trash can feeling like I was going to vomit and visiting the restroom a lot. My cardiologist came in and with his awesome Indian accent says "I'm sorry to see you in this condition," and then says to me after I sat there "Lay down Hannah and sip some water," so I did. It helped a little bit. I think I have a virus, but I don't really know. Even though he's my Cardiologist, it felt pleasantly bizarre to have someone acknowledge that my sitting up may be contributing to how horrible I feel.
I found out today that the medication I was prescribed when I was in the hospital with violent tremors back in April? is causing my higher side of normal prolonged QT's to be a little more prolonged. So, I have to go off that and switch to something else. I had a gut feeling my medicine was causing problems because out of nowhere I started getting my PVC's again and one day my resting pulse was 60 and the next it was 90's- 99 (and the medication is on the list of ones to avoid for individuals with long QT). My BP also has been crazy, either low, high, or good. But, God is good, I prayed that if there was an issue that it'd show up, and it did <3.
I was suppose to have a Urology appointment right after my Cardiology appointment but I was just too sick. Right now, I'm trying to figure out how to cure my lightheadedness without getting sicker on my tummy. All I've eaten today was a banana (before my stomach really started showing itself), a few fries and some chips. I'm trying to get some water in me too because I am definitely dehydrated. My cardiologist told me to try for 2-1/2 to 3 liters of fluid instead of the 2 I've been shooting for. I'm hoping the increase helps! :)
Okay, on to the questions,
Logei: That sounds so horrible about throwing up your tube and how you've had to replace it yourself, I'm sorry you are going through that. I hope however, this makes some leadway for some serious improvement with your issues <3. Also, I hope you get your IV fluids, I know you really need them! Your raw ice-cream sounds DELICIOUS!You wanted us to post our favorite recipe and I think this is probably one of my more favorite recipes:
Skillet Chicken Stew
(ingredients are roughly chopped)
Chop one chicken breast and season with garlic powder, salt and rosemary to taste. Put two tablespoons of olive oil in a skillet over high heat, add chicken and reduce to medium heat, brown on both sides.
Add two chopped carrots, 1/2 cup of green beans, one chopped zucchini, one chopped sweet potato, one small chopped tomato and three tbsp. of rice flour. Sautee for ten minutes or until vegetables are tender.
Add two cups chicken broth, cover and increase heat to high until it reaches a boil, then reduce heat to medium for approximately seven minutes. add three to four more tbsp. of rice flour or until thick, and enjoy!
(Sorry to our none U.S. readers/dysautonomiacs, I don't know how to convert the measurements to what you use)
Also, I know we talked about it, but I get those autonomic overload things, too!
Francesca: I like your idea with the blue shirts and pots on our heads, I think we should post a pic on here of us like that! What do you guys think?! Your question was what are we going to do for awareness week, and I'm not entirely sure yet, hopefully I can travel up to your end and do the bake sale with you :).
Cheyanne: I am sorry to hear that you are severely anemic! I have struggled with anemia too, and I know blackstrap molasses is suppose to help, I have tried it a couple times but it tastes disgusting lol. And I know we chatted about this but wanted to post this for the sake of our readers as well, what your describing with your throat sounds like what I went through about a year? (and a good bit since) ago. They said it was a muscle spasm and I used hot tea,( probably would have been better to just use warm water with honey since tea makes my acid reflux worse, which makes my throat worse), the heating pad, and muscle rub on my throat. Not sure if muscle rub on your neck is bad or not but I was desperate. Now that I've had the PH probe done, I think my acid reflux highly contributed to it, if not caused it. Interestingly enough though, they have found calcification somewhere in my throat/neck but don't feel it's caused those issues. Your question was what is our favorite food to eat when we are sick but know we have to eat something, and mine is probably fries from mcDonalds lol. What is it with POTSies and potatoes? We seem to LOVE potatoes!
Alright ladies, I sure hope this made sense, I am like...Not feeling so well right now, and please excuse me if I missed anybody's questions. Miranda, I sure hope things look up for you and that your testing sheds some light on what you are dealing with and hopefully get some relief! Rhianne, I know you are not doing well and I really feel for you right now girl. Keep on keeping on! Mel, I hope things start getting better for you too! Your such a sweet girl! And to all the other ladies, I am not sure how you all are doing, but I hope that means you are GOOD!
~Hannah
Today, was bad symptom wise... I had a cardiologist appointment and got sick before with my GI, but went anyway thinking it was like my normal POTS GI issues and that I would just fight through it...And cardio appointments really aren't ones to skip! But, I ended up holding a trash can feeling like I was going to vomit and visiting the restroom a lot. My cardiologist came in and with his awesome Indian accent says "I'm sorry to see you in this condition," and then says to me after I sat there "Lay down Hannah and sip some water," so I did. It helped a little bit. I think I have a virus, but I don't really know. Even though he's my Cardiologist, it felt pleasantly bizarre to have someone acknowledge that my sitting up may be contributing to how horrible I feel.
I found out today that the medication I was prescribed when I was in the hospital with violent tremors back in April? is causing my higher side of normal prolonged QT's to be a little more prolonged. So, I have to go off that and switch to something else. I had a gut feeling my medicine was causing problems because out of nowhere I started getting my PVC's again and one day my resting pulse was 60 and the next it was 90's- 99 (and the medication is on the list of ones to avoid for individuals with long QT). My BP also has been crazy, either low, high, or good. But, God is good, I prayed that if there was an issue that it'd show up, and it did <3.
I was suppose to have a Urology appointment right after my Cardiology appointment but I was just too sick. Right now, I'm trying to figure out how to cure my lightheadedness without getting sicker on my tummy. All I've eaten today was a banana (before my stomach really started showing itself), a few fries and some chips. I'm trying to get some water in me too because I am definitely dehydrated. My cardiologist told me to try for 2-1/2 to 3 liters of fluid instead of the 2 I've been shooting for. I'm hoping the increase helps! :)
Okay, on to the questions,
Logei: That sounds so horrible about throwing up your tube and how you've had to replace it yourself, I'm sorry you are going through that. I hope however, this makes some leadway for some serious improvement with your issues <3. Also, I hope you get your IV fluids, I know you really need them! Your raw ice-cream sounds DELICIOUS!You wanted us to post our favorite recipe and I think this is probably one of my more favorite recipes:
Skillet Chicken Stew
(ingredients are roughly chopped)
Chop one chicken breast and season with garlic powder, salt and rosemary to taste. Put two tablespoons of olive oil in a skillet over high heat, add chicken and reduce to medium heat, brown on both sides.
Add two chopped carrots, 1/2 cup of green beans, one chopped zucchini, one chopped sweet potato, one small chopped tomato and three tbsp. of rice flour. Sautee for ten minutes or until vegetables are tender.
Add two cups chicken broth, cover and increase heat to high until it reaches a boil, then reduce heat to medium for approximately seven minutes. add three to four more tbsp. of rice flour or until thick, and enjoy!
(Sorry to our none U.S. readers/dysautonomiacs, I don't know how to convert the measurements to what you use)
Also, I know we talked about it, but I get those autonomic overload things, too!
Francesca: I like your idea with the blue shirts and pots on our heads, I think we should post a pic on here of us like that! What do you guys think?! Your question was what are we going to do for awareness week, and I'm not entirely sure yet, hopefully I can travel up to your end and do the bake sale with you :).
Cheyanne: I am sorry to hear that you are severely anemic! I have struggled with anemia too, and I know blackstrap molasses is suppose to help, I have tried it a couple times but it tastes disgusting lol. And I know we chatted about this but wanted to post this for the sake of our readers as well, what your describing with your throat sounds like what I went through about a year? (and a good bit since) ago. They said it was a muscle spasm and I used hot tea,( probably would have been better to just use warm water with honey since tea makes my acid reflux worse, which makes my throat worse), the heating pad, and muscle rub on my throat. Not sure if muscle rub on your neck is bad or not but I was desperate. Now that I've had the PH probe done, I think my acid reflux highly contributed to it, if not caused it. Interestingly enough though, they have found calcification somewhere in my throat/neck but don't feel it's caused those issues. Your question was what is our favorite food to eat when we are sick but know we have to eat something, and mine is probably fries from mcDonalds lol. What is it with POTSies and potatoes? We seem to LOVE potatoes!
Alright ladies, I sure hope this made sense, I am like...Not feeling so well right now, and please excuse me if I missed anybody's questions. Miranda, I sure hope things look up for you and that your testing sheds some light on what you are dealing with and hopefully get some relief! Rhianne, I know you are not doing well and I really feel for you right now girl. Keep on keeping on! Mel, I hope things start getting better for you too! Your such a sweet girl! And to all the other ladies, I am not sure how you all are doing, but I hope that means you are GOOD!
~Hannah
Friday, August 26, 2011
If That's Not Forgetful... I Don't Know What is!
Hey lovelies! So, wanna know why I haven't been posting other than when Cheyanne subbed for me (thanks SO much girlie)? Pure forgetfulness! I even wrote down the questions last week and still forgot. I am so not with it haha. An update on me is that, I am signed up for one online class (Nutrition!), and that starts on Monday. I have still been very fatigued and been having random pain and have been more POTSy this past week than usual. BUT, a new person at my primary's office I saw for the first time a week or so ago...Studied with the ASTRONAUTS! So he is familiar with Dysautonomia! Can you say...AMAZING? He told me that when I go into presycope, to take slow deep breaths (but don't Quit breathing!) that, that slows the autonomic nervous systems reaction down so you can sit and hopefully ward the episode off. I have tried it with other symptoms, not enough though to really say how it works.
You ladies who are just starting school, I hope it has started wonderfully.
My answers to the questions may be all over the place and I may have missed some.. I'm not even sure if I went far back enough to get them all but I thought it'd overwhelm everybody haha...
Rhianne: About what happened with Childrens' neurology...I am so sorry. They basically said the same thing to me when I was having violent tremors. I am with a new neurologist at a different hospital and he is so much more willing to help! I mean, I don't want to bash Childrens' neurology, I am sure they are great at what they do... But when it comes to Dysautonomia, the one's I have seen...Just really don't get it lol. Again, I am sure they are great at what they do, and they seem caring...But Dysautonomia is not something the ones' I saw were familiar with.
Your dare was to write something positive in a paragraph about the person who posted before me (LOVE this dare!)..
Miranda, I have met you in person and I must say...You have a radiant smile! You are very intelligent, which I admire, and I still would love to get to know you more. You have a great sense of humor and awesome German language skills. Just in a nutshell, I think you're a pretty awesome and special girl and I am sorry that you are a fellow sufferer of POTS, but you are a great person to relate with!
Miranda, you asked me if I found anything that might stop or trigger my tremors, and yes. A few things are weather, UTI's, dehydration and blood flow and more recently I think I'm finding that BP plays into it. Things I've noticed to help prevent it, is; not sitting on my legs (where I could cut off blood flow), staying hydrated, eating protein (I have not been checking my blood sugar but I kind of think that might play into it to), adequate sodium, and I think I'm going to start taking B-1 again to see what happens.
You also asked Are temperature regulation problems common for everyone else? Fairly common for me... I've noticed some days that my temperature is lower than usual!
Logei: I am sorry that you had to have the mannometry done, but what a genius thing it was to bring your vomit in! I am so ecstatic that you got your feeding tube (though I wish you didn't need one, but I am glad that they are trying to get your needs met!). Your question was, Do you have a pet? And yes I do :). Gizmo, Zippy, and I think our older Dog Bessy thinks she's mine too, haha.
( I can't find a good enough picture of Bessers! lol)
Cheyanne: Your question was, How well do you tolerate meat? And do you get terrible constant stabbing pains through the abdominal area? Sometimes I tolerate meat pretty okay, and other times not so well. It is the same with raw vegetables. I do better with raw fruits. And I used to have stomach pain/ heartburn/ and/or nausea pretty much all the time. More recently is horrible heartburn at times and awful esophagus pains/trouble swallowing randomly as well...or when a food or activity triggered it. The only things that have really helped me is diet change. I try to do less grease, more fiber foods, more fresh foods, more organic, and I quit eating gluten. Sometimes I think I'm fine to skip my acid reflux medicine (you know how we get so tired it's all we can do to bring ourselves to swallow that pill?), then I realize... I'm so NOT fine to do that. Oh, and B-1 also helps my digestive track!
Erin: I do not believe you had a question, but what a sweet post... God's seeds definitely made me feel emotion!
Mel: Heeeeeeey girl! Welcome aboard! Awesome to have you on here (We already know each other but... I'm glad to get to know you more! haha) :). We will certainly miss Rhianne but glad to have you filling in for her! :). Your question was What do you guys do to "escape" from your sickness? I listen to music, play games, watch tv/movie, etc. Sometimes, as weird as this may sound- I let myself feel the overwhelming emotion of being ill. I crawl in bed, play some of my favorite songs, cry, go to sleep so I can wake up and feel better knowing that it's okay because God is taking care of me <3. Sometimes we just gotta let it out to move on, right? :).
My question is: How much water a day do you try to drink? Or, if you really cannot drink a whole lot, what would be or is your goal? My goal is about 2 liters but sometimes that's not even enough, but my cardiologist says drinking too much is bad as well, I think because of washing your electrolytes out.
Sorry for the lengthy post! I hope you guys and our readers have an amazing weekend. Girls, you may need to remind me next week, haha. Keep hangin' in there all of you guys, readers and ALL ! :).
~ Hannah
P.S. Francesca, we must of posted at the same time haha. I hope you get to feeling better and quit getting so many dislocations :( Must hurt so bad :(...so, feel better :). And stay SAFE!
You ladies who are just starting school, I hope it has started wonderfully.
My answers to the questions may be all over the place and I may have missed some.. I'm not even sure if I went far back enough to get them all but I thought it'd overwhelm everybody haha...
Rhianne: About what happened with Childrens' neurology...I am so sorry. They basically said the same thing to me when I was having violent tremors. I am with a new neurologist at a different hospital and he is so much more willing to help! I mean, I don't want to bash Childrens' neurology, I am sure they are great at what they do... But when it comes to Dysautonomia, the one's I have seen...Just really don't get it lol. Again, I am sure they are great at what they do, and they seem caring...But Dysautonomia is not something the ones' I saw were familiar with.
Your dare was to write something positive in a paragraph about the person who posted before me (LOVE this dare!)..
Miranda, I have met you in person and I must say...You have a radiant smile! You are very intelligent, which I admire, and I still would love to get to know you more. You have a great sense of humor and awesome German language skills. Just in a nutshell, I think you're a pretty awesome and special girl and I am sorry that you are a fellow sufferer of POTS, but you are a great person to relate with!
Miranda, you asked me if I found anything that might stop or trigger my tremors, and yes. A few things are weather, UTI's, dehydration and blood flow and more recently I think I'm finding that BP plays into it. Things I've noticed to help prevent it, is; not sitting on my legs (where I could cut off blood flow), staying hydrated, eating protein (I have not been checking my blood sugar but I kind of think that might play into it to), adequate sodium, and I think I'm going to start taking B-1 again to see what happens.
You also asked Are temperature regulation problems common for everyone else? Fairly common for me... I've noticed some days that my temperature is lower than usual!
Logei: I am sorry that you had to have the mannometry done, but what a genius thing it was to bring your vomit in! I am so ecstatic that you got your feeding tube (though I wish you didn't need one, but I am glad that they are trying to get your needs met!). Your question was, Do you have a pet? And yes I do :). Gizmo, Zippy, and I think our older Dog Bessy thinks she's mine too, haha.
 |
| Gizmo left, Zippy right |
( I can't find a good enough picture of Bessers! lol)
Cheyanne: Your question was, How well do you tolerate meat? And do you get terrible constant stabbing pains through the abdominal area? Sometimes I tolerate meat pretty okay, and other times not so well. It is the same with raw vegetables. I do better with raw fruits. And I used to have stomach pain/ heartburn/ and/or nausea pretty much all the time. More recently is horrible heartburn at times and awful esophagus pains/trouble swallowing randomly as well...or when a food or activity triggered it. The only things that have really helped me is diet change. I try to do less grease, more fiber foods, more fresh foods, more organic, and I quit eating gluten. Sometimes I think I'm fine to skip my acid reflux medicine (you know how we get so tired it's all we can do to bring ourselves to swallow that pill?), then I realize... I'm so NOT fine to do that. Oh, and B-1 also helps my digestive track!
Erin: I do not believe you had a question, but what a sweet post... God's seeds definitely made me feel emotion!
Mel: Heeeeeeey girl! Welcome aboard! Awesome to have you on here (We already know each other but... I'm glad to get to know you more! haha) :). We will certainly miss Rhianne but glad to have you filling in for her! :). Your question was What do you guys do to "escape" from your sickness? I listen to music, play games, watch tv/movie, etc. Sometimes, as weird as this may sound- I let myself feel the overwhelming emotion of being ill. I crawl in bed, play some of my favorite songs, cry, go to sleep so I can wake up and feel better knowing that it's okay because God is taking care of me <3. Sometimes we just gotta let it out to move on, right? :).
My question is: How much water a day do you try to drink? Or, if you really cannot drink a whole lot, what would be or is your goal? My goal is about 2 liters but sometimes that's not even enough, but my cardiologist says drinking too much is bad as well, I think because of washing your electrolytes out.
Sorry for the lengthy post! I hope you guys and our readers have an amazing weekend. Girls, you may need to remind me next week, haha. Keep hangin' in there all of you guys, readers and ALL ! :).
~ Hannah
P.S. Francesca, we must of posted at the same time haha. I hope you get to feeling better and quit getting so many dislocations :( Must hurt so bad :(...so, feel better :). And stay SAFE!
Friday, August 5, 2011
Forgetful Me!
Hey guys! I literally completely forgot to post last week. If that's not brainfog... I don't know what is lol. Since I missed so many questions, I will start with those!
Michelle: First, it's been great getting to know you! Welcome, welcome! Your questions were, What do you think is the hardest part about having a chronic illness? The emotions of it all. I think we could handle our symptoms if they didn't interfere so significantly with our goals and relationships. But as much as I want to get better and am still trying like crazy (we all are!), I am grateful for this experience. It has given me a new perspective on life. And, Has anyone done PT, how did you like it? Did it help? First, I need to ask you what kind of PT can you do regarding your headaches? I get lots of headaches! Would it be vestibular? Vestibular was recommended to me but I never did it. I've done pilates on my own, started from my bed...Helped me get out of bed after a year! That and new medication. =) Sorry you are feeling so sick!
Cheyanne: It's been great getting to know you too, welcome aboard! And this reminds me, I haven't sent you the list of foods that have B-1 yet! That had to be really scary about the issues found with your lungs. I am relieved to hear that the issues were not what you originally thought or that they didn't worsen. I also wanted to say, I've heard of quite a few people developing POTS after Gardisil. May this be a caution to our readers! I'm sorry you got sick after it! There should definitely be a warning regarding it. Especially because you are pressured by the medical community to get it and feel you are doing something positive. Your question was, Do y'all get brainfog and how long does it last? I find that my brainfog is significantly impacted by my sleep. Of course adequate sleep can seem like an impossibility to us! I do believe it is also affected by my diet and vitamins. I get horrible brainfog sometimes where I'll be in a conversation and I will have known what we were talking about in the beginning, but then I forget. My brain fog usually lasts weeks at a time when it's really bad. Lessened is just random times through the days and weeks.
Miranda: I'm glad your mouth is doing better and I sure hope your upper GI went well! You are very welcome for the stuff :). It's interesting how you get tremors like I do. I really think our symptoms are so similar, it's crazy! I have actually been stung by a jelly fish before and it hurts so bad! It was when I was a child, but I still remember, that's for sure! Lol. I hope it gets better! Your question, Do you guys have problems with your blood sugars? Yes, a Doctor told me they thought I have reactive hypoglycemia, but we didn't follow-up with her. But I still get symptoms of it where my sugar seems to drop. I haven't been taking it, but protein has seemed to be doing wonders for me, and when I don't have it...It's not a good situation, I'll say that!
Francesca: Glad you are a new weekly poster :). That is so great that you know both Spanish and ASL, it's my goal to learn both of those! I did take Spanish in highschool but it was on a computer program and I forget most of it! That's so not cool that you get tremors that look like seizures too. Have you had an EEG? Your question, How many of you guys wear medical alert bracelets? I do! Now however, since I am starting to get a better idea of what the bulk of the medical community knows about our illness, I want to update it and put an informational website or something on there. Oh, and your question about the signatures, I made mine on Picnik.com. I just made a new one!
Erin: I don't think you had a question, sorry if I missed it! That's awesome that you made an informational blog solely for POTS/EDS! I know Miranda has something like that, too. Great idea! Also, glad to have you as a regular poster as well!
Logan: I am so happy that you are doing so well! Praise God! Whoo to the Hoo!! I don't think you had a question either, sorry if I missed it!
Tana: You are still missed! And I am glad you had a good Birthday :).
Rhianne: You are home! Welcome back! I hope you get some lovely refreshing rest!
Okay, since answering the questions took a lot of space, I will be brief about how I've been. I got my cystoscopy done and I do believe it helped. Since the day after though, I've not been doing so well. It was this past Monday, and that and a few other factors have really taken it out of me I think. Today I was in my recliner all day!
My question: What is one positive that has come through your illness? For me, it's becoming closer to God and through that, I think I've become a more understanding and compassionate person.
Love ya ladies, Hope you are all doing well and have a great weekend!
Michelle: First, it's been great getting to know you! Welcome, welcome! Your questions were, What do you think is the hardest part about having a chronic illness? The emotions of it all. I think we could handle our symptoms if they didn't interfere so significantly with our goals and relationships. But as much as I want to get better and am still trying like crazy (we all are!), I am grateful for this experience. It has given me a new perspective on life. And, Has anyone done PT, how did you like it? Did it help? First, I need to ask you what kind of PT can you do regarding your headaches? I get lots of headaches! Would it be vestibular? Vestibular was recommended to me but I never did it. I've done pilates on my own, started from my bed...Helped me get out of bed after a year! That and new medication. =) Sorry you are feeling so sick!
Cheyanne: It's been great getting to know you too, welcome aboard! And this reminds me, I haven't sent you the list of foods that have B-1 yet! That had to be really scary about the issues found with your lungs. I am relieved to hear that the issues were not what you originally thought or that they didn't worsen. I also wanted to say, I've heard of quite a few people developing POTS after Gardisil. May this be a caution to our readers! I'm sorry you got sick after it! There should definitely be a warning regarding it. Especially because you are pressured by the medical community to get it and feel you are doing something positive. Your question was, Do y'all get brainfog and how long does it last? I find that my brainfog is significantly impacted by my sleep. Of course adequate sleep can seem like an impossibility to us! I do believe it is also affected by my diet and vitamins. I get horrible brainfog sometimes where I'll be in a conversation and I will have known what we were talking about in the beginning, but then I forget. My brain fog usually lasts weeks at a time when it's really bad. Lessened is just random times through the days and weeks.
Miranda: I'm glad your mouth is doing better and I sure hope your upper GI went well! You are very welcome for the stuff :). It's interesting how you get tremors like I do. I really think our symptoms are so similar, it's crazy! I have actually been stung by a jelly fish before and it hurts so bad! It was when I was a child, but I still remember, that's for sure! Lol. I hope it gets better! Your question, Do you guys have problems with your blood sugars? Yes, a Doctor told me they thought I have reactive hypoglycemia, but we didn't follow-up with her. But I still get symptoms of it where my sugar seems to drop. I haven't been taking it, but protein has seemed to be doing wonders for me, and when I don't have it...It's not a good situation, I'll say that!
Francesca: Glad you are a new weekly poster :). That is so great that you know both Spanish and ASL, it's my goal to learn both of those! I did take Spanish in highschool but it was on a computer program and I forget most of it! That's so not cool that you get tremors that look like seizures too. Have you had an EEG? Your question, How many of you guys wear medical alert bracelets? I do! Now however, since I am starting to get a better idea of what the bulk of the medical community knows about our illness, I want to update it and put an informational website or something on there. Oh, and your question about the signatures, I made mine on Picnik.com. I just made a new one!
Erin: I don't think you had a question, sorry if I missed it! That's awesome that you made an informational blog solely for POTS/EDS! I know Miranda has something like that, too. Great idea! Also, glad to have you as a regular poster as well!
Logan: I am so happy that you are doing so well! Praise God! Whoo to the Hoo!! I don't think you had a question either, sorry if I missed it!
Tana: You are still missed! And I am glad you had a good Birthday :).
Rhianne: You are home! Welcome back! I hope you get some lovely refreshing rest!
Okay, since answering the questions took a lot of space, I will be brief about how I've been. I got my cystoscopy done and I do believe it helped. Since the day after though, I've not been doing so well. It was this past Monday, and that and a few other factors have really taken it out of me I think. Today I was in my recliner all day!
My question: What is one positive that has come through your illness? For me, it's becoming closer to God and through that, I think I've become a more understanding and compassionate person.
Love ya ladies, Hope you are all doing well and have a great weekend!
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