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...

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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