Hey ladies, Hannah here. I was filling in for Michelle this past Friday (at least I think it was her week LOL) And typed most of my rough draft and forgot to post! So, Cheyanne kindly is letting me post this on her day... Thanks Cheyanne (Enjoy her post today!)! (Also, I will not be answering any questions from posts after Friday, I will do that when it's my next time to post:).
I have not been up to much here this week, I have been feeling quite bad. But I have been having a yard sale and second hand shop obsession here lately, and am enjoying riding around to yard sales. It's a nice way to go out with a purpose and not have to go into a store, plus I have been trying to be sweatshop free and as a result, it seems most things I get that is possible to get second hand, I do. Most of my clothes and some other miscellaneous things are second hand. I am finding it exciting as well to be learning to "up-cycle" things and use old things to make new things. I am finding it exciting for not only the reason of being sweatshop free and saving money, but because it gives me something to do. And it's fun learning to be resourceful, it causes you to be creative and try and picture old things as new things.
I found a bin at a yard sale full of 10 cent kid's shirts, and I got a load of them and made a mini rag rug (but it got ruined when I washed it- haha). I also made a loom for no cost to me (we had a piece of wood and I used my dad's hammer and nails!) and that'll come in handy for making rugs, and scarves and possibly blankets.
I am also trying to work on my sewing skills. I am just so thrilled to be learning these skills (please note I am not boasting- I am definitely a novice LOL). I was talking to my aunt about my current situation of being too sick to get a degree- and then we were talking about working from home (I have explored this), and I told her right now, I am working on some skills since I can't work. Maybe I can make at least some extra money off of some things I make and if not, just save money for myself (really for my parents who are graciously taking care of my needs and furthermore my wants! I am blessed!) by using "trash" to make something usable :). One good thing about having Dysautonomia- is it causes us to think outside the box! Anyway, enough of my verbal explosion about my excitement in re-using things haha.
Erin: I am sorry to hear about you needing surgery! You did ask the question, Has anyone had sinus surgery? And I have not... But my Dad had some sort of surgery with his nose, I believe it was sinus surgery sometime ago... I don't think he had Lyme at this point but I can't remember... The only complaint I really know from him now is that "ever since I had that surgery I feel like I have something in my nose!" Haha, meaning, what you need to use a tissue for (I tried to say that as ladylike as possible!). Your "official" question was, Does anyone experience dermographia or mast cell activation disorder symptoms? I do believe when I was younger I experienced symptoms at least similar to Dermographia. However now, other than random itchy times, when me itching the skin causes it to become red, irritated and painful, I don't really think I do. As far as the MCAD, I notice a lot of the symptoms are just like those of POTS- However, symptoms that may be unique to it; I do experience allergies, flushing, random itchiness, random cough, etc. but I cannot say that it is MCAD. I wish I had more precise answers for you! <3.
Rhianne: I saw your video! Good job falling off the chair- haha. Anywho, your "question" was to finish the statement: You know you have POTS when...
You know you have POTS/Dysautonomia when... You spend your birthday money on vitamins
You know you have POTS/Dysautonomia when... Going to the grocery store without a wheelchair is your idea of adventurous
Cheyanne: I know you are having difficulty with urination. If you haven't already, you may want to check into a urologist. I had issues with urination/ recurrent UTI's until I had a cystoscopy done. <3.
Your questions... If you get tremors or jerks, what have you noticed set them off? Sugar, like if I drink a sugary drink like sweet tea or soda really fast, I can get shaky... Sounds, usually random unexpected ones, sometimes activity, and other times they are just random. Sometimes I wake up and realize I have sweat a lot and I'll have tremors and just sleep them off (lol), so I guess also a loss of fluid. Do you know what caused your Dysautonomia? I do not, I thought for a while since I wasn't hypermobile, that POTS/Dysautonomia was my primary condition (as oppose to secondary with EDS, etc), however, I am now learning there can be other causes besides that, puberty, and viruses or other set off's similar to viruses, so that is something I want to investigate. There are some things I am thinking could be links, but I'm still trying to play investigator and put the links together (and of course, I need to be thinking of a Doc who can help me).
Logan: What do you guys do to avoid getting sick in the car? Whether from motion sickness, or sensory overload? For me, short rides are usually okay, unless they are on a mountain or a hilly area. What I do on those roads is I try to stay engaged in a conversation to totally distract myself from it. I find eating (believe it or not) also helps to. I've never been one to throw up from motion sickness, just get the gross headaches and upset tummy. On long rides I cover myself in a blanket, so I think the eye mask idea is great! I also found (until I realized I couldn't take it because of long QT) that Dramamine did help the little bit I tried it.
I hope making it to PT appointments becomes easier for you :) Hang in there with your feeds! <3
Christine: Welcome aboard :) It's nice that we are having a variety of Dysautonomias to learn from each other, other than just POTS. I know Michelle R, I think has an unknown form of Dysautonomia. Your question, Do any of you suffer from sleep deprivation and what do you do to help it? Yes! And that's a good question haha. Right now I am in the process of dealing with a sleep Doctor to try and figure that one out. When melatonin is an option (when my BP is at a number I feel comfortable taking it with- or I just feel physically like it should be fine) that helps me to at least fall asleep. Otherwise, for energy, the only thing I know of is vitamins (if you want to know what all I aim to take- let me know!)- sometimes exercise (that's a balancing act as sometimes that can make it worse) and just nutritious food.
My question... What over the counter medication, or herbal/vitamin/mineral supplements do you guys find that help with headaches, and/or allergies. (Note: Your headaches don't have to be related to allergies, I know a lot of us, myself included, have headaches all the time!)
Alright peoples! Hopefully I don't make the same mistake next time haha,
Until Next Time...