September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

January 31st, 2019 Home therapy - or doing with intention

By | Published Thursday, January 31, 2019




I did some new things in vision therapy today, which meant my Anxiety was triggered. After therapy, I remembered that in the beginning I couldn't do Feldenkrais or VT at home, & then eventually, I could.

I also remembered my home therapy kind of skidded to a halt (I wrote a post on 11/16/18 Anxiety & Depression - Recognition & progress).

I didn't talk about home therapy in that piece... I've been telling myself that integrating skills from therapy into activities is what matters, but I have a hunch doing home therapy - doing a specific thing with intention - also matters.

Christina says flooding myself isn't the way to go... but there's a big difference between flooding, & skidding to a halt... Joyce gave me a routine in May of 2017, when I had my big setback, to help my sensory system regroup - part of the Masgutova method she's trained in - which I still do, & I've made progress with it.

So I need to talk to Ann & Joyce about little ways to bring back home therapy... thinking this immediately triggers Anxiety... UGH... I hate how hard this is - there's so many triggers - but I have to do this... the only way to know what I can handle outside of sessions - & what will help me - is by trying.

And I have to admit, there's this little voice struggling to be heard inside my head, saying "damn it, you can do it!"


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January 29th, 2019 Facing PTSD Anxiety's very hard

By | Published Tuesday, January 29, 2019




My mom asked a basic Q - why is my vision therapy taking so long?  I decided my answer was worth sharing, so here it is -

MAV - My vestibular migraine complicates my situation - Dr. Margolis was upfront about that right from the beginning. 

Sensitivity - I think I rate pretty high on the sensitivity scale - this has, for example, been an issue for me re using prism glasses (fairly commonly used)... I've thus far not been able to do more than a short bit in VT of a low level prism, but this is certainly better than nothing, & something that does get re-visited periodically.

Neurological rehab is never easy, even without Anxiety.

I don't want ANYONE to think the work of facing Anxiety's easy - words are just words, & don't always adequately show the picture - the sign that I did for this piece is kind of how I feel about anxiety. The word "words" is the automatic thoughts that bombard me when my PTSD Anxiety's triggered.

PTSD Anxiety - it took a  long time for me to figure out about, & be able to face dealing with my Anxiety - I say it with a capital "A" because it's not "garden variety, everybody gets this" anxiety. This is "I need meds, & the help of a professional to deal with this" Anxiety, & it's fucking hard work!  The meds make it possible, but it's STILL really, really hard.

Avoidance  - avoidance was a thing.  I still fight avoidance.   I don't like how I feel when my Anxiety's triggered, & Christina has pointed out that it's important not to flood myself - the goal is success, which comes gradually, over time.  My psychiatrist, Dr. Mirsky, always says to me that I'm dealing with my Anxiety -  the hard way (I think he means gradual exposure, etc.), because that's the way that works.

My Anxiety doesn't even want me to claim the progress I've made - it really messes with my mind - but I AM making progress, now that I AM dealing with my PTSD Anxiety.


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January 26th, 2019 why I share my story

By | Published Saturday, January 26, 2019


I chose this picture not just because it's lovely - it's also winding, & there's lots of small steps... & balance


My CBT therapist, Christina, told me that trauma changes your brain & I believe her. I also believe that your brain tries to make sense of what's happening, & suspect that's what happened to me the night I got sick.

I like having answers - I think most people do - but I had no idea how long it would take me to get all of my answers.  The final piece was a little over a year ago, when I realized I have PTSD anxiety - one of the changes to my brain (the other 2 being vestibular migraine, & convergence insufficiency - a vision disorder)... I was initially only diagnosed with benign paroxysmal positional vertigo - BPPV - which was finally successfully treated about 10 months after I got sick.

Why do I share about all of this in my blog? Why am I not private about it? While I don't share everything, I do share a good deal, & here's why -

1) it's exhausting, draining to keep secrets about what affects my life on a daily basis.

2) my writing helps me put the pieces together, & hopefully helps someone else - I know how hungry *I* was for info... I've shared Luis Carlos Montalvan's story on my FB page because it was from listening to his book that I realized *I* had developed PTSD anxiety as a result of my illness.

3) People talk about all sorts of medical conditions - why not also be comfortable talking about mine? I'm realizing more & more how my Anxiety impacts my perception, my thinking - I'm slowly learning how to respond. If you want to know about one of my disorders, ask me - if I'm not comfortable, or don't have an answer, I'll say so.

4) People need to respond with compassion & kindness, empathy (putting oneself in someone else's shoes) to those with invisible disorders/disabilities - & understanding hopefully makes that a bit easier.

5) I give you snapshots of my process, & a life worth living, with disabilities. I talk about my therapies - my neurological rehab - because they're a large part of my life.





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