Hi my name is Tonya I am subbing for the blog beecaue Rhianne asked me to, I was honored to do so Okay so I just want to say a quick blurb about me. I am 19 and have POTS and EDS along with so many other things. Okay so on to the questions, Question was, Do you have any interest in medical shows?, Yea actually I a cvery interested in medical shows because I want to be a doctor, I love to watchh mystery E.R, Untold Stories of the E.R., E.R., also some of the true story segments. I haven't watched any in awhile as I have not watched t.v. fr about 2 months now. Question was, If you could be good at or participate in any sport despite your dysautonomia, what would it be? Vey easy for me to answer, KARATE all the way, I was in karate from 8-12 until my EDS kickd into even higher gear and started to develope POTS symptoms, I was winning tournaments and was even given a spot on the team which is a very high honor, this is the one thing I brag about a little bit. Question was, Do you get excessive amounts of phlegm after eating? Actualy yes I do and I also struggle with swallowing and was hospitalized recently for something else that coexisted with this and the doctors were concerned and mentioned feeding tubes in my near future if I continue losing weight so rappisyl, I have lost 60 pounds in 6 months and am malnuritioned and vitamin deficient aand my potassium was extremely low upon admission. They were thing something to dowit my spinal fluid possiblyy as I walso came in with head pressure and pain in my head and neck and could not sit up. Question was, Do you have fibro or lyme? Okay so they are thinking I may have fibro, but it is hard to determine because I am in so much pain from EDS already, but I know other EDSERS with EDS and Fibro. I am unsure as to wether I wa tested for lyme, ut I am ike 90% sure I was. Oay I beleive that is all the questions for tonight. It is 3:48 here in Rhode Island U.S.A, for future reference Rhode Island is not in New York, it is a seperate state, not that I think you are dumb or anything, but it is a common mistake, had I not lived in New England I would probably have made the ame mistake. Now ypou can tell people you know that R.I. isn't in N.Y. Okay I am making no sense now, but anyway. So I have not been doing to well lately I had just gotten obver a kidney infection whcih I get often and one nearly killed me as a kid, spent two months with picc line and feeding tube and entibiotics to recover and stayed on long term antibiotics for like 3 years and then caeme off them and did well for awhile, until now that is. I stopped the antibiotics when I was done them and noww a few days later les then a week it feels like it is bback and on top of that I now have aa sinus infection. I have been having lots fot troube with POTS too, bt I didn find benydryl helped the flushing episodes so much, I wa trying it for the sinus inection, but helped me with flushing and I ate non stop today, mostly junk because that is what I have access to, but anyway, I usually can only eat a tiny buit and then am sick today that was not the case at all! Also today me and Hannah, made a group on facebook for POTS, EDS, FIBRO, CFS, NCS and anyone else who has invisible illnesses within reason who wants to join so you all are welcome ther and at my support and prayer group also and you don't need to be religious to join. I have been getting home OT and PT, also nursing and cna, seems to help, but insurance is about to run out on it and will have no safe way to shower whe it does as I can't afford the adaptive shower stuff. I will have to figure something out there, I am going to have to see my cardio/ E.P. doc and also my orthopedist and probably my primary this week and also find a nephrologist for my kidney's. Welll I think that is about all, I am tired and could probably ramble on more, but I will spare you lol. I hope I did this right, sorry if it is way too long, let me know what you think in case I sub again. Also feel free to friend request me on facebook, Rhianne and Hannah are my friends on facebook also.
Tonya Marie York