July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for 2019

July 17, 2019 - Come Autumn, what if??


I can handle managing our household now, which is a major achievement.  Based on what I've learned about my invisible disorders -  both experientially and in Feldenkrais, vision, and cognitive behavioral therapy - I need to think about how I use, focus my effort.

I wrote a piece "test-driving" - doing (Sept. 25, 2018) in which I said that therapy is a means to an end, not an end in itself. 

So the question for me is this -

My stamina is much better than it used to be, but what if I wasn't using energy every week on all 3 therapies? What if I transition to maintenance - as opposed to weekly - treatment?

I know I want to continue my various creative outlets - they're important to me. I'll continue to do other activities, such as listening to audio books, movies, etc.

What about working on a more ambitious writing project, maybe working with someone on this? I don't know. What bite-size "out there" thing might I try?  I don't know.

I chose many things in my life, but getting sick wasn't one of them.  When I put on my self-compassion hat, I say to myself "no one is living in your body but you, & ultimately you have to make choices that feel right for you."

I'd say "talk with Ann & Dr. Margolis. Same goes for Joyce. Talk with Christina about what you want to try, depending on what the game plan with Feldenkrais and vision therapy looks like".

Lastly, I say to me "do the best you can - what your life is, isn't what you'd imagined, so let yourself feel frustrated, angry & sad when you need to... & do the best you can".

My life could be much worse - I'm keenly aware of that, & I want to get as much out of my life as I can. About that question of what I'd do instead, well, after I've talked it through with my medical team, maybe it's time  - this Fall - to find out.

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January 23rd 2016 Feel the loss, figure things out... keep moving...

Ron asked me not long ago if I missed grocery shopping and I said that there were definitely things I miss, but that that activity wasn't one of them.  Ron started doing the grocery shopping (and other errands) when I developed hand problems, so he's been doing it for a few years now.  I have a list on my computer, which I tweak each week, and he's gotten to know the two stores where we buy our groceries.  Going to stores isn't something I do much; between the various noises, the lights, and a combo of visual factors, it takes a lot out of me. 


Fast forward to me - very recently - sitting in our car in the parking lot (in the passenger seat - I don't drive) while he ran in to buy something I'd forgotten to put on the list.  I was with him because we were returning from an appointment of mine.  I hadn't been in the parking lot of the grocery store for a long time.  As I sat there watching people, I remembered his comment, and it suddenly struck me that what I missed wasn't the activity itself, but rather the ability to do it. 


I had told Ron, when he asked me about shopping, that I try really hard not to think about what I can't do anymore.  But there are moments when the emotions hit me, like this moment of realization.  I reminded myself that everybody I saw probably had their own story, but I couldn't help thinking how they appeared to move so easily, going about their business.  And I miss that. 



Later that same day, I had a brief e-mail exchange with Joyce (FT) about my latest flute frustrations, and she had some helpful ideas.  Sometimes when I'm problem solving with my daughters, I tell them to break things down, and keep things simple, and I need to take my own counsel.   The message behind the ideas Joyce had was to break things down - not in a bad "having a break-down" way, but rather going back to my "figure it out" concept.  Joyce pointed out to me that back when I taught flute, I would try to simplify everything to make it as easy as possible for my student to learn.  That's what I need to do for myself. 


Fast forward again to my session with Ann (VT) during which I discussed my frustrations with getting back to reading sheet music.  Issues I put together after my recent reading of sheet music, because I can't figure things out without trying things out.  Ann added on to Joyce's ideas; we talked more about breaking things down, and how to work some things through. 


In many ways, I'm learning to read again.  There is reintegration (and in some cases, integration for the first time) that needs to happen re the info I take in with my eyes, and the processing/perception in my brain.  The same is true for me for other tasks, such as flute playing.  I have to take in info on the printed page (sheet music), and relay it first to my brain, and then to my fingers, while I maintain my sense of where I am in space.  Integration is key:  if you don't integrate sensory input, or spend too much energy on one part of the sensory input, you have problems.


So I put these moments together - thinking about Joyce's reply to break things down and simplify everything, as well as Ann's input, and then my emotions sitting in our car in the parking lot.  I realized yet again how important it is to do both; as I continue my journey, to let myself feel, and then break things down as much as is necessary, in order to be able to integrate or reintegrate.


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July 13, 2019 coming up with 11!



1 - checking the date by looking at the date on my computer screen - bottom right, very small

2 - unplanned visit with landscaper this a.m., which ended up including calling Ron on his cell during this visit

3 - scrolling thru my iPad Audible library to decide what to listen to next

4 - scrolling thru YouTube offerings, before picking a vid to watch

5 - watching more visually demanding videos

6 - figuring out what about something makes me REALLY anxious, so I can do things gradually, so I'm successful

7 - calling to renew a prescription, while laying out my meds for the week

8 - laying out my meds is easier, smoother

9 - I now have my calendar on the wall, & so I stand to cross off each day, rather than doing it sitting down

10 - I did a phone order to LandsEnd with NO help - start to finish - looking thru the catalog, placing the call, reading the item numbers, giving my credit card number - 1st time with no help since I got sick!!

11 - going to library with Ron to pick up a DVD on hold, ending up looking at a computer screen, AND talking to 3 different librarians!

Coming up with this list of what started as 10 & ended up 11 items!


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July 11, 2019 Keep it simple, & enjoy along the way


I talked with Ann - vision therapy - & got 2 ideas for outings -

1) take a short train ride from one suburb to another, with a goal of what I'll do - doesn't have to be a big thing - at my destination - having a thing to do is important. She thought actually going somewhere would be better than just sitting at the train station, thinking about doing it.

2) when Ron runs an errand, go with him - I haven't been inside some of the stores around here for a long time, but I have been to some - so it's about doing it a bit more regularly.

How to vary things with my Brock string -
1) Use all 3 beads, so I have to switch my gaze from the 1st to the last

2) vary the location of where I do it

3) vary the speed with which I do it

Using my stripes -
1) hold my markers at different levels in front of the stripes

2) use 2 different kinds of objects - like a pen & a marker - the smaller target adds difficulty

3) vary the speed

4) vary the distance between the objects

Things I've done that weren't so intentional, but presented themselves -

walking around one of our cats, or our dog, when I do my infinity walk.

stopping in the middle of an exercise to pay attention to one of our pets - which might even mean balancing on 3 points (2 legs, 1 arm) instead of all fours!

Some intentional things I've done - that are worth noticing -

1) going on my computer before CBT

2) posting pics - some of drawings - with my posts

3) changing the litter boxes by myself

4) changing the water filter attached to our kitchen sink by
myself

There's lots of simple ways to challenge myself. And I'm not going to forget to encourage myself, AND enjoy - little moments, & not so little. This story of mine is NOT just about a destination.




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July 10, 2019 A different kind of list


"Stamina" - the ability to sustain prolonged physical or mental effort

"Endurance" - from the root word "endure" - the fact or power of enduring an unpleasant or difficult process or situation without giving way.

I decided to look up the definitions of these two words - stamina and endurance - because I've been thinking about them both.

Stamina to me is more directly related to strength, as in building up my physical strength as well as cognitive/mental strength.

Endurance is necessary in order to keep going through a difficult process, in my case all of my neurological rehabilitative therapies. 

I've written before about various goals I have for myself, such as travel, live theater, & doing more outside my house.

Christina (CBT) told me about Kristin Neff, who talks about self-compassion. Here's a link to a really interesting short video of Neff talking, about Iraq soldiers, self-compassion  & PTSD - https://www.youtube.com/watch?v=3MGxmw7BgZE

I watched another, longer vid as well, & was struck by the idea of treating myself as kindly as I would a good friend.

I need to be my own ally, as opposed to my own enemy.
I'd start by telling myself that what happened to me was horrible - not just the night itself, back in Sept. 2011, but that my life got completely upended. Telling myself this is surprisingly powerful.

When I move through the grief, anger, frustration, etc., I say to myself "wow, you're working hard - good for you!"
Then I say "how can I help?" & the first thing that comes to mind is "encourage me" - isn't that a key in being my own ally, to encourage myself, especially when I feel really challenged, even overwhelmed? 

Then I ask "So what do you think about all those things you want, those goals?"

"Well, thinking about what I'd like to be able to do is overwhelming," to which I'd say to me "remember, the key is baby steps - not great, big, giant leaps."

My invisible disorders are not compartmentalized, but rather interconnected. If I think, for example, about traveling somewhere by train, this would be systemic multi-tasking for me, multi-sensory. Something that I'd need to repeat a number of times before I learned it neurologically, just like I've needed to learn taxis.

The same is true for anything new, & what I do in vision therapy, Feldenkrais, & cognitive behavioral therapy all need to help me in this process of learning. Some new things I try require some recovery time. There is frequently problem-solving involved.

I don't know literally and figuratively how far I can travel. I need to try things, & every time I do something new - even if it's a very small thing - there is learning.

Getting back to self compassion, while I'm trying, I need to tell myself "that was hard, so be proud of yourself that you tried!"
and if I'm successful "wow, look what I did!".

I need to remember how far I've come -

There was a time when going to my parents house down in Hyde Park (Chicago) was too much for me.

Going to our cousins in Marengo, IL was too much for me.

Doing 2 things in one day is sometimes possible for me.

Doing outings multiple days in a row is sometimes possible for me.
Using a smart phone is possible for me.

Using 3 different kinds of glasses, one of which has prism as part of the prescription is possible for me.

Managing our household is now possible for me.

I've got a long list of things I couldn't do before, that are now possible for me.

"So," I say to myself, "you've come a long way, be proud of yourself!"



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July 7, 2019 - find your team, & work hard... & another list


Here's a sign I did about my list -



and here's my latest list -



Today I looked thru a LandsEnd catalog, & will place a small order this week by phone.

I'm still listening to Dr. Clark Elliott's book "the ghost in my brain" - the ghost mainly refers to the person he'd lost when he suffered his concussion. This ghost of himself finally re-emerges when he works with Donna Lee Marcus - https://www.designsforstrongminds.com/

& Dr. Zelinksy - https://mindeye.com/  
for a variety of special glasses. Dr. Zelinsky does not provide any kind of therapy.

Some of his explanations – he teaches at DePaul University in Chicago - are very good.  

The honesty of his story is refreshing. Above and beyond the explanations, a major take-away is this - 
he found the right medical team after 8 years of suffering. 

Additionally, he worked extremely hard - pacing his neurological rehabilitation, which in his own words could be quite debilitating - in order to regain his life.

Improvement doesn't come by magic - it comes by finding the right treatment, after you've gotten an accurate diagnosis, & working hard.

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July 5, 2019 Reflect on challenges, & do my homework



This is the calendar on which I'm going to keep track of my homework.

I've noticed a pattern when my PTSD Anxiety gets triggered - I either a) go into total avoidance mode or b) go into impulsive, hyper problem solving mode.

On June 23rd, I went to my congregations fundraiser performance of "you're being ridiculous" & felt more overwhelmed than I had anticipated. On 6/27 I did something in vision therapy that triggered a physiological fight or flight reaction.

On July 4th I went to our local celebration with my daughters, joined by my husband, & we walked around all the booths.  I actually carried on conversations with the two vendors we ultimately bought from.

I also took a look at the small flower show. Overall, there was a fair amount of sound - music playing, people talking, & even a siren from a fire truck (on an actual call, not part of the parade that would start a bit later). 

My reaction to the VT exercise that was too challenging was "I'll never do that again!", & to the "Ridiculous" show "OMG!".  The show was in the evening, which is always more challenging. I think I was a bit stressed when I got to the restaurant, and although I kind of thought about it, I did not take a break during the performance.  The show ran long – at least an hour and 45 minutes.

I've been listening to Dr. Clark Elliott's book The Ghost in my Brain."  Dr. Elliott suffered a concussion and did not get proper treatment until eight years after this traumatic brain injury.  I have a much better understanding of what concussive's experience, but what's personally interesting to me is his description of the treatment that he did.

I thought about Dr. Elliott, & Sue Barry, (whose book, Fixing my Gaze, I've already listened to), & thought about homework. My vision therapist Ann, and Dr. Margolis, have both always said that what really makes for progress is home therapy. You have to show up for yourself. So when something's difficult for me, I want to step back & say "OK, now that you're done freaking out, what can you do?" 

Here's the stripes that I work with –


Ann needs to re-calibrate – which she talked about with me already – so that what I do in vision therapy challenges me but doesn't overwhelm me.  And yes, I still need to pace myself when I go out for a special event.  And if I don't get it quite right, I will survive – I did get through the show, & I DID enjoy some of it.  I wouldn't have even gone to it 6 months ago!

I think it's not surprising that I reached out to Cheri Moore, auditory integration training specialist, after the "Ridiculous" show. It may, in fact, turn out that my developmental optometrist Dr. Margolis will recommend that I do AIT, but he's in a better position to make this assessment than any online assessment can do. And I need to recognize what happens when my PTSD Anxiety is triggered – where my brain goes. 

I need to learn from what I do, & I need to do my homework.  I believe that with a good medical team, effort and hard work can pay off. I did really well, actually, for the July 4 outing – I need to register that along with the "oh my God" reactions.


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July 4, 2019 Enjoyed my morning, ready to keep moving


I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-)

I handled the noises pretty well, & got myself this wonderful new hat - keeps me cool, super comfy, with a touch of color from the flower band :-)



We brought our dog Cosmo, who loved going on an outing with us, & I ended up walking past - with my daughters - where the community band I used to play in was performing, & it felt strange but not terrible.

I realized that I was enjoying the morning with my family, & have found some level of acceptance & peace with the changes in my life.

I'm feeling more ready to move on. Happy July 4th!

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July 3, 2019 More info, keep learning, keep going


More research -

I looked up northshore University health system (my network) otolaryngology -

Vestibular ENT doctors focus on Ménière's disease.  For a doctor who deals with vestibular disorders other than Ménière's, you have to see a neurologist.

For more info re vestibular disorders, also take a look at the vestibular disorders Association site - www.vestibular.org

Neuro/Otology (head & neck) basically focuses on surgery.

Audiology - hearing - this is where there's info re acoustic reflexes.  Cheri has talked about ipsilateral (same side) and contralateral (opposite side) acoustic reflexes.  She told me that my ears are working together.

It's all connected -

The vestibular (balance) and cochlear (hearing) nerves connect to send messages to the brain. 

The vestibular ocular reflex – this is a neural connection between eyes and the vestibular system in the inner ear, for image stabilization. 

Vision is NOT just about 20/20 - that refers only to acuity, which is how well each eye can focus on an object 20 feet away. There's much more to vision than acuity! Complicated stuff!



My diagnosis -

I was diagnosed with convergence insufficiency by Dr. Margolis, my developmental optometrist, and vision is what gets addressed prior to auditory issues. I know I already work in VT re all kinds of sensory integration.

For more info re vision, & doctors who treat functional disorders - not just disease - check the college of optometric vision development - www.covd.org

Keep learning, keep going -

Seeing an ENT about hearing loss would, I think, make sense prior to getting any additional tests done.  However, my hearing loss is mild, and I suspect that the tinnitus I sometimes experience, as well as the fullness are not what most doctors would consider medically significant. 

Before doing any additional testing or doctoring, I need to talk to Dr. Margolis. 

Also, continue reflex work with Joyce (Feldenkrais) to help calm down sound/sensory input.

To quote Dr. Margolis re my sensitivity, "a little bit can have a big impact." I may not feel like I'm doing much in the moment, when I do a few seconds of something, but every little bit adds up.


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July 2, 2019 problem-solving allows for clarity





When you have a complicated health history - as I do - figuring out which pieces make sense can be tricky.  I took the opportunity to try to untangle things a bit, and gain some clarity in my CBT session today with Christina.  It was helpful and I thought I would share some of it –

1) Christina pointed out that the brain MRI I had one month after my illness was normal, & that I didn't have - nor do I have - cognitive impairment.

2) Cheri is very good at what she does - auditory integration training, Dr. Margolis recommended her - but she's not a doctor, which means she's not in a position to make a diagnosis.  Christina recommended that I talk to Dr. M., share what Cheri has talked about with me, & see what his thoughts are on my doing AIT.

Since I'm not scheduled to see Dr. M for another month, I emailed him to see if I can talk to him on the phone before that.  In my email, I explained that I had spoken with Cheri, done her online assessment, & wanted to talk about it with him.

3) Christina & I agreed that seeing an ENT who understands vestibular issues (as opposed to a surgeon, like the ENT I actually saw after my hearing test), to talk about the results of my hearing test, would make sense.  

4) I don't know for sure if the neurologist I'm scheduled to see in September will think a sleep study is warranted. My sleep IS much better than it used to be, & likely a major factor in why I've been doing better with all my therapies.

5) Cheri wants to be thorough, which is good, but my Anxiety is getting triggered because she's pointing out all kinds of "what ifs?".  I need to keep in mind type 1 worry (actual problem) vs type 2 (possible).

The reality is that I'll never be able to know for sure what happened to me the night I got sick.  It may indeed make sense for me to do some auditory integration training, & taking a break from VT when I do that, would make sense.

6) I don't have VT this week (Thurs. is July 4th), so when I see Ann on the 11th (by which time hopefully I'll have spoken with Dr. M.), I'll talk to her about what schedule makes sense for me. 

7) I also need to find out when I can get acoustic testing for both ipsilateral and contralateral (ear) reflexes.  I will ask about this when I called to schedule the ENT appointment. 

Ipsilateral is the reflex that works when that same side is stimulated, and contralateral is the reflex that works when the opposite side receives the stimulation.  By Feldenkrais practitioner, Joyce, said that she is going to see what she can find out that might help me.

And now it's time for another list -
- opening my text, and calling the taxi driver this morning to confirm that he was on his way

- calling the anxiety treatment center to let them know I was running a few minutes late, but was on my way

- recognizing when PTSD anxiety flares up, reminding myself that the goal is for it to diminish over time, not completely disappear

- walking my dog by myself is actually now an enjoyable activity

- I look around much more when I'm out walking

- it's useful to recognize a problem, but it's also useful to acknowledge what's good - no one, including myself, gets extra credit for focusing on the negative

- I'm trying to listen to, share music that makes me smile, & listen to audio books that help me learn, or feel good

- writing this post!

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June 30, 2019 gathering info, hopefully leading to answers



I decided to share this in case someone out there will benefit from the info. I know *I* benefit when others share.

With a lot of help from my daughter Cara, I finished Cheri's online auditory/vestibular adult assessment. Cara clicked to save as a pdf, I e-mailed it to Cheri, & she called me this afternoon.

Cheri's going to e-mail me a summary of our conversation, but these are the basics. She wants me to get a sleep study, which means first seeing a neurologist, who would write the order for it.  My husband Ron has a friend who  knows an excellent neurologist at Evanston Hospital, & Ron's going to see if I can get in to see the guy within a month or so.  If the wait's too long, I'll go to the same neurologist my daughter saw - not an outstanding doctor, but definitely competent.

Cheri wants to see if I have central sleep apnea. She's concerned that I actually had a stroke that night back in September 2011. She also wants me to get a referral from the neurologist for an ENT with expertise in vestibular issues and Ménière's. She said there's a possibility I'm in the early stages of Ménière's. I wasn't happy to hear that, but also not surprised.

Cheri said until I know if anything's happening with my sleep, she's recommending that I do home therapy for vision therapy, but not the sessions.  Feldenkrais calms the sensory system, but vision therapy challenges the vestibular system, and that may be stressing my system right now.

So, it's a lot to process, but I clearly need to get as much info as I can, & as much understanding as possible.  It will only be in getting as much information as I can, that I can move forward to live my life as fully as possible.  Cheri really does her homework, for which I'm very thankful.  She really is exceptional.



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June 26, 2019 Auditory integration training??? worth exploring...



I spoke with Cheri Moore, the auditory integration training specialist who we've been talking to re one of our daughters.  I wanted to tell her my story, & get her take on whether auditory integration training - AIT - would help me.

I told her my whole story in summary, & she agreed with Dr. Margolis' assessment that the night I got sick was neurologically like having a stroke, & Christina's statement that trauma changes your brain. 

Cheri asked me lots of Qs, which I did my best to answer.  She also asked me to e-mail her the hearing test I had done this past March, & I'm also going to have Ron send her the hearing test I had in Oct. of 2011, since I recently found that in my medical records.



Cheri's going to do some homework, & talk to an audiologist she works with, & I'm going to talk to Cheri again on Fri. afternoon.  I'm not looking for a miraculous recovery if I do AIT - or new diagnoses - but this seems worth exploring, given my sensory problems.


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June 23, 2019 How I notice progress



I realized something - the fact that I've recovered as much as I have is wonderful & remarkable... I'm not miraculously cured, but I'm so much better than I used to be.

I still think about the mistakes along the way, and find myself wishing I'd gotten to where I am now, sooner... but I didn't stay stuck - which is what really counts.

I also know just how fortunate I am to have been able - & continue to be able to do my therapies. This has given me time to process, to grieve, to reassess, to readjust - this is the human experience of rehab.

My medical team benefits from this as well - getting to know me, learning what works for me. I often wish I knew what to expect, because my PTSD still looks over my shoulder, expecting something bad... yet I looked at My Timeline of Progress (10/24/18), & I see that I can update it, adding that I now have prescription sunglasses, & prism as part of my prescription for my reading glasses.

I didn't add this to my timeline, & I don't write about Feldenkrais much, but finding Feldenkrais was my first step towards recovery, & I learn from it all the time... this past week Joyce told me that she thought I was finally ready to handle more direct work with my eyes - pretty cool!

I'm still waiting for a definitive finish line, but the reality is that unlike an actual race, there seldom ARE definitive finish lines.  More often, there are transitions, & changes. I want to keep improving - growing & learning, but I also want to notice what's happening right now.

So, I made myself stop, think about this past week - here's what I came up with -

1) handling quick phone calls from Ron, even as I did some things on my computer.

2) handling a few texts while being on my computer.

3) transitioning into an activity when I get home from walking Cosmo.

4) handling some schedule changes on a couple of days this week

5) Sorting thru some medical files - that was interesting

6) being aware of my movements in new ways when I do my Feldenkrais home therapy.

7) Noticing my visual horizon, particularly when I play my flute, or the piano.






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