My positively chronic life | Personal blog
My positively chronic life
Phone: +61 414 979 203
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24.01.2022 Speechless, she is me... https://australiandystoniasupportgroup.wordpress.com//tra/
23.01.2022 So the last week was a bit of a false start for me on the road back to working again. While I was getting excited at the prospect of starting my return, the set back has not hindered my determination to get back some of my life outside of this house
22.01.2022 How do you push through when the one place that you could exersize without pain, also turns to torture... My precious hydro is no longer precious How do you push through when the one place that you could exersize without pain, also turns to torture... My precious hydro is no longer precious
19.01.2022 Woot woot car mods approved!!!!Woot woot car mods approved!!!!
19.01.2022 So sad Chiari is confusing enough for humans, a poor little pup would be so frightened
19.01.2022 Yesterday I met with a Neurophysiologist and was impressed that he had clearly read through my reports & history, and really knew his stuff when it came to dystonia. He is going to look at botox initially focusing on 2 key muscles. As his clinics are fully booked until November he could not book me straight it. But is going to look to shuffle some things around.
19.01.2022 I know, I've been slack again!! Apt with weight loss surgeon went pretty well. Left there with a list of things to get done before we meet again in 3 weeks blood test See dietitian - I'm in the waiting room now.... See psychologist - booked Abdominal ultrasound - booked Barium swallow - booked Plus have a date for my botox!!! 28 October it works!!
15.01.2022 This is bang on! Really strung a note for me.
14.01.2022 I have a couple of friends who call or message me nearly every week just to say hi, and ask me how I am going. It may not feel like much to them, and they may not know how much it means to me, or what an important part they are playing in my wellbeing. But it is little things like this that can mean a world of difference to a person feeling so isolated because of their health. We need more people like these couple of ladies in the world.... Thank you
13.01.2022 Niagara Falls will be illuminating purple on this Friday September 18th 2020 in honor of Chiari Malformation Awareness Month! The falls will illuminate purple f...rom 10:00 - 10:15 PM Eastern Standard Time. You can watch them live here; https://www.niagarafallslive.com/ A huge thank you to Agnes Marie (Starr) organizer of the CCWAA in Buffalo, NY for working diligently to make this happen each year. We would also like to thank the Niagara Falls Illumination Board for their continued support to our mission.
09.01.2022 This article blew me away, I connect with it on every level. It Even speaks to the purpose of why I started this page.
09.01.2022 So I'm really confused. Have done two posts that disappeared... So super quick up date weight loss surgery 25 Nov license downgraded to learners, have to do a test with RMS HAVE all but one peices for modifications, request sent to NDIS for the steering device.... Deposit paid on car it's super funky Had botox, was pretty painless and is starting to take affect. after pestering for surgery took on ANOTHER specialist, pleas welcome the Endocrinologist. Looks like after years of asking I may have an underactive thyroid due to my Empty Sella Syndrome. Will start trying meds after surgery. I think that mostly covers it. Hope this post works!
05.01.2022 This is so valid for so many people living with disability or chronic health, and why we should all think before we judge.
02.01.2022 Craziness, just saw a post in the Chiari Support group about a lady who went to her neuro with numbness right side face & arms, issue with hands & eye pains. He refers her for an MRI, when she goes to book the MRI the earliest appt it mri 5th November!! Of course she is on the cancellation list etc.... and is looking at any other possible solutions. I get that the world is a little crazy, but this is not ok. I really feel for her.
