Nofair so much ice time! ^_^ I miss skating a lot. I was competing etc also but when we moved I was 2hours from the nearest rink & slowly lost it all. :/ Ah well. I am glad Lyrica & TCAs are helping your neuropathy. Pain management is so critical for us! Request: Will you tell us your whole illness story? Much love sweetheart! <3
Oh man. You're a figure skating coach too? How awesome! I used to skate. Miss that too. How are you doing pain management wise? That can be such a challenge. I find my pain management is correlated w/ my dysautonomia which is weird! What kind of research do you do now? I hope your day went okay! I know you had a rough night. *hugs* Much love! Xoxox
@SheWhoFeels yes, I was competing/skating/coaching in the afternoons and weekends, in the mornings I taught pre-k from 8-1. I take Lyrica and low dose tricyclic antidepressants for nerve pain. It's not foolproof, but it works enough most of the time.
Hello, nice to meet you. I am in healthcare also. I do physical therapy homecare a couple days a week since that min the standing. I can no longer work in house. I have had pots about one yr next month. It hit me like a freight train last winter after ebv maybe? still looking for answers. poss mito, or autoimmune. Hope you feel better soon. Most times I push myself way too much and pay price there after.
Great to meet you! I can't believe you finished school and were working 12 hour shifts!! Bleehh, I was working those when I first started exhibiting symptoms and felt like crap all the time. You go girl. Hope you to hear more from you soon!!
@POTSieChik yeah, I started school Fall of 2005, by Fall of 2006 I started having more problems keeping weight on, passing out, tired.. went through the whole ANS testing for POTS and dysmotility. I was "normal" but borderline. That's when I started on Florinef and Midodrine for my BP. I had had GI issues in winter 2005 (6 months before nsg school started), spent 3 weeks in hospital going through tests...
Welcome to Vlog Land! ^_^ Do you know if your transverse myelitis is idiopathic or 2^ to another pathology? I'm 36 too! My chronic illness is all post-EBV. I have CHF & lots of the same dysautonomia sx as you & chronic pain too. Same RE: tons of meds! Yay for another healthcare person too! I was a PharmD/MD student but couldn't finish. Research! <3 I miss it! Yay for being a NICU angel! :) The Community here ROCKS! So glad you joined us! Much love! Xoxox
@SheWhoFeels they think it was due to a common cold virus. My ANA levels were elevated a bit. I had had a minor cold the week before, along with fatigue and a migraine. I had been super stressed (both good and bad stress) for a few weeks leading up to getting TM. I was competing in Provincials when I had that cold, and was leaving for Nationals the following weekend. I got TM on Thursday, and was supposed to leave Sunday after our annual Ice Show where I coached.
Hi :D So nice to meet you, you did a great job explaining everything. I am sorry you have had to go through so much. Really glad you have decided to vlog and look forward to your next one. Hope that tonight things have eased up for you so you can rest tonight. Goodnight, Jan :D
Yay! I'm a 36yo dysautonomics, as well. Thanks for sharing your story with us.
missnikkiann 2 weeks ago
Nofair so much ice time! ^_^ I miss skating a lot. I was competing etc also but when we moved I was 2hours from the nearest rink & slowly lost it all. :/ Ah well. I am glad Lyrica & TCAs are helping your neuropathy. Pain management is so critical for us! Request: Will you tell us your whole illness story? Much love sweetheart! <3
SheWhoFeels 4 weeks ago
Oh man. You're a figure skating coach too? How awesome! I used to skate. Miss that too. How are you doing pain management wise? That can be such a challenge. I find my pain management is correlated w/ my dysautonomia which is weird! What kind of research do you do now? I hope your day went okay! I know you had a rough night. *hugs* Much love! Xoxox
SheWhoFeels 4 weeks ago
@SheWhoFeels yes, I was competing/skating/coaching in the afternoons and weekends, in the mornings I taught pre-k from 8-1. I take Lyrica and low dose tricyclic antidepressants for nerve pain. It's not foolproof, but it works enough most of the time.
marieked 4 weeks ago
Hello, nice to meet you. I am in healthcare also. I do physical therapy homecare a couple days a week since that min the standing. I can no longer work in house. I have had pots about one yr next month. It hit me like a freight train last winter after ebv maybe? still looking for answers. poss mito, or autoimmune. Hope you feel better soon. Most times I push myself way too much and pay price there after.
hotsypotsymamaof2 4 weeks ago
Great to meet you! I can't believe you finished school and were working 12 hour shifts!! Bleehh, I was working those when I first started exhibiting symptoms and felt like crap all the time. You go girl. Hope you to hear more from you soon!!
POTSieChik 4 weeks ago
@POTSieChik yeah, I started school Fall of 2005, by Fall of 2006 I started having more problems keeping weight on, passing out, tired.. went through the whole ANS testing for POTS and dysmotility. I was "normal" but borderline. That's when I started on Florinef and Midodrine for my BP. I had had GI issues in winter 2005 (6 months before nsg school started), spent 3 weeks in hospital going through tests...
marieked 4 weeks ago
Welcome to the vlogging world, Marieke! :) I look forward to watching your vids!
GallopingCloud 4 weeks ago
Hey! Hugs! Great to see you on here! Hope today is better!
FlyinHyy 4 weeks ago
@FlyinHyy thank you! yes better today :)
marieked 4 weeks ago
Welcome to Vlog Land! ^_^ Do you know if your transverse myelitis is idiopathic or 2^ to another pathology? I'm 36 too! My chronic illness is all post-EBV. I have CHF & lots of the same dysautonomia sx as you & chronic pain too. Same RE: tons of meds! Yay for another healthcare person too! I was a PharmD/MD student but couldn't finish. Research! <3 I miss it! Yay for being a NICU angel! :) The Community here ROCKS! So glad you joined us! Much love! Xoxox
SheWhoFeels 4 weeks ago
@SheWhoFeels they think it was due to a common cold virus. My ANA levels were elevated a bit. I had had a minor cold the week before, along with fatigue and a migraine. I had been super stressed (both good and bad stress) for a few weeks leading up to getting TM. I was competing in Provincials when I had that cold, and was leaving for Nationals the following weekend. I got TM on Thursday, and was supposed to leave Sunday after our annual Ice Show where I coached.
marieked 4 weeks ago
Hi :D So nice to meet you, you did a great job explaining everything. I am sorry you have had to go through so much. Really glad you have decided to vlog and look forward to your next one. Hope that tonight things have eased up for you so you can rest tonight. Goodnight, Jan :D
FootprintsIntheSand7 1 month ago
@FootprintsIntheSand7 Thank you! I actually slept pretty well.. had to wake up early for a PT session. I'll need a nap later!
marieked 4 weeks ago