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 ! :).
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!