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 October 2018

October 30th, 2018 Deeply grateful

Wow! my blog - documenting my journey - has been viewed (all the pieces, cumulatively) over 100,000 times..... THANK YOU to everyone who has read, shared, commented - it means SO much to me that as I share my story, which has zigged and zagged all over, that others relate... That I can help someone, by sharing, is huge to me.

Neurological change comes best in small, incremental pieces - so my/your brain can absorb, process... I still have struggles due to my migraine associated vertigo, and convergence insufficiency, AND anxiety... AND I'm still working.

"Challenge but not overwhelm".... keep building, bit by bit by bit by bit... try to live in the moment - what's happening right now is all I really know for sure.

My heartfelt thanks and gratitude to everyone, who continue to share, and help me on this journey.... I'm proud of myself, AND I couldn't do this alone.

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October 26th, 2018 synergy.. actually kind of cool

Yes, something very bad happened to me in Sept. 2011... but I'm also fortunate...

I live in the Chicago metro area, where I could - eventually - get my migraine associated vertigo diagnosis from a neurologist, my Dx of irritable bowel syndrome from a gastroenterologist, convergence insufficiency from a developmental optometrist,  AND receive quality care/treatment from -

a Feldenkrais practitioner
a cognitive behavioral therapist
a psychiatrist (start meds)
a vision therapist (finally ready for special glasses)

& last but definitely not least, much needed support of all kinds to DO all of this, AND be able to KEEP doing, working to improve.

Retraining the brain on multiple levels is NOT a fast process - something my psychiatrist always reminds me of when I see him.

I'm noticing things now - when I let myself notice - some subtle, some not so subtle (shorter afternoon rest)... there's some kind of synergy happening between all of the treatments I'm doing ... there's all these little pieces showing me, undeniable proof that change is still happening in me.

Taking a break - either because someone is unavailable or because I choose to, to give myself a chance to try what I can't do when I'm busy with therapy, and to let my neurological self absorb and process, makes sense.

But stopping - because it's hard, because it's slow, tedious, because it's frustrating, etc.  - is NOT the right choice.  There are these moments when it's also kind of amazing - it's wow, look what I just did!

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October 24th, 2018 Timeline - Updated June 2019

A timeline of my medical journey - an interesting cognitive exercise, as well as visual -

Early Sept., 2011 - wake up to terrible VERTIGO

May 2012, referred from a friend, start with Joyce - OT/Feldenkrais practitioner

July 2012 - after LOTS of doctors, testing, get diagnosis of migraine associated vertigo - MAV - from neurologist

Sept. 2012 - with help from my mom, I figure out all my food migraine triggers & change diet, also find vestibular disorders Association website - a whole page devoted to MAV!

April 2013 - referred by Joyce to Dr. Neil Margolis (developmental optometrist) all kinds of visual tests, get diagnosis of convergence insufficiency (CI) - probably undiagnosed childhood condition which got MUCH worse due to illness, my vestibular ocular reflex (VOR) also impaired

May 2013 - start Vision Therapy with Ann

June 2017 - see gastroenterologist, get diagnosis of irritable bowel syndrome, apparently a common combination with MAV

end of Nov. 2018 - start working with my psychiatrist - Dr. Mirsky - treating anxiety as a result of sudden onset of illness, and the depression I have fallen into

March 2018 - on recommendation of Dr. Mirsky, start cognitive behavioral therapy (CBT) with Christina

April 2018 - adjust to special glasses

By Summer 2018, I'm going out more

Oct. 2018 - at appt with Dr. Mirsky, he's pleased with my progress - I tell him I'm avoiding less (doing Worry Exposure)

Christina says I'm doing the work, she's just the coach.  I've started talking with her about advocacy - speaking up about vestibular and vision disorders - want to find ways to talk about what happened to me, what I experience, so that I can move forward, rebuild.

Spring of 2019 - adjust to prescription sunglasses

March 2019 - hearing test

May 2nd 2019 - begin adjustment to prism as part of my reading/near glasses prescription

June & July 2019 - considering what's next - is it time in the Autumn for maintenance rehab??

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October 21st, 2018 getting real

I looked up the definition of the word realistic - this is what I found -

     1.  having or showing a sensible and practical idea of what can be achieved or expected.
2.  representing familiar things in a way that is accurate or true to life.

I have disabilities - I don't use that word much, but it's true... that's the box I check on the taxi coupons I use - "disabled rider"... I feel like owning my disabilities is healthy, not about giving in. 

Here are some of my realities -
1) I don't drive, & I think it's unlikely I will again.

2) I'm no longer a performing, teaching flutist, tho I still play my flute.

3) I don't travel, & it's unlikely I will again. I'm able to visit my parents, & other family by car.

4) I'm trying to do more with my husband Ron.

5) I read - & LOVE - the comic strip MUTTS, as well as headlines in our local paper, and the headings of some newsletters. I've gone thru a couple Lands'End catalogs, and then gotten help from Ron to make purchases.

6) I'm very limited re my computer usage, tho I've learned how to use my iPad to listen to audiobooks.

7) I draw, play our piano keyboard, & occasionally connect by phone with friends/family.

8) I'm able to do some ordinary but necessary household tasks (i.e. cooking, laundry).

9) I'm interested in advocacy - speaking out about vestibular and vision disorders - specifically migraine associated vertigo (MAV), & convergence insufficiency (CI) (eye teaming).  I'm thinking about what more I can do, how I can better educate people. 

10) I do neurological rehab - Vision Therapy & Feldenkrais - & plan to take a break in 2 months, when my daughters are on Winter Break.

I need to own my invisible disorders, which means talking about how my symptoms feel, not hiding.  Explaining to those who are interested, & will listen. Putting a face on these disorders makes them real.  *I* am here.

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October 19th, 2018 disappointments, frustrations, but keep looking

Being positive doesn't mean shutting out feelings - I'm human... Energy - or lack of it - getting tired, is a problem for me... I spoke with someone who told me what programs/classes are available thru senior centers - I don't FEEL like a senior, but at 57 I guess I'm on the edge... but I'm not ready for most of what's available - I ended up feeling overwhelmed & a bit defeated... I didn't tell her much about my health situation - I'm finding that people often don't really want details.

I told myself that once upon a time I never would have had that conversation, that reaching out is a good thing... Trouble is there's often disappointment... It occurs to me, there ARE going to be a lot of disappointments, but I have to keep going.

I hope I can build up my stamina... not easy to do, and in the meantime, I need to keep looking, to figure out what I can do NOW. 

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October 17th, 2018 Is it #1 or #2 - Worry, that is...

I decided to make myself a sign, because I think stopping, and recognizing which kind of worry it is, is important. 

When I Googled Worry 1 vs Worry 2, I got a lot of info re worry vs anxiety, but no good definitions of these 2 kinds of worry, which surprised me.  There's an important distinction in the field of treatment of anxiety, regarding these two kinds of worry.

Worry 1 - this is a real, actual problem - could be long term, short term, big, small, in between, whatever - but it's real, and hopefully can be fixed, or at least minimized and/or managed.

Worry 2 - this is not an actual problem, it's worrying about something that COULD happen.

Sometimes there's things you can do to prevent the likelihood of something happening.  This can make a lot of sense - safety rules are a great example of this. But there's no way to predict for sure what will happen. 

Letting go of a worry 2 isn't easy, but doing what I can in the moment, is really all I can do.  The only thing I really have control over is myself, in this moment.

Photo credit - Ron

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October 16th, 2018 problem solving - it's usually not a quick fix

There are, occasionally, simple problems with simple, easy to implement solutions... far more frequently - I believe - there are complex problems... the 1st crucial step is to recognize there is a problem - awareness.

the second, complicated, often multifaceted step is the problem solving process - often this is really a whole series of steps.
gathering info - some of which helps, some not.

trying out each part takes time, patience, possibly money, effort, perseverance, possibly some bravery.

When I realize or recognize a problem, I want to figure out the solution - the answer - right away, and fix it... and I want to know the end result - that it's going to work.  Sometimes this is possible, but oftentimes not - the process has to be gone through. Often there are changes in plans along the way.  There are some things we have control over, much that we typically don't.

I'm learning... I'm grateful I have a therapist I can speak to honestly about my anxieties, the messy, knotted, not-so-simple stuff.  She's getting to know me more bit by bit, gaining understanding of my visual and vestibular disorders.

Being able to do something doesn't mean it's going to be easy, but rebuilding my life is worth it.

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October 14th, 2018 Challenges BIG & small... doing, not avoiding

LFC campus dog walk - Yesterday afternoon, after my CBG outing with Ron in the a.m., our daughter Cara called, saying they needed the air mattress, and 2 sleeping bags... Ron said he'd bring them, AND our dog - they'd walk Cosmo on campus!  Staying home - missing out - was depressing, so I went.

I was ANXIOUS, did a lot of breathing in the car... Ron and I even ended up going briefly into the new Lillard science Center... got 2 bonus hugs from my daughters, and when we got home, I took a long break, but got through the evening, went to bed early.

My plan has to change - This morning, Ron told me there was a political debate he wanted to attend in the afternoon (without me, which was fine)... this meant finishing our grocery list, AND putting everything away all in the morning.  Again, I felt anxiety - "this isn't what I'd planned, why hadn't he told me, I have cooking I need to do, I had a BIG day yesterday, this is too much!" - but I got through the morning.

On my own - My OT/Feldenkrais practitioner is going to be out of town, so I'm seeing her on my regular Mon., and then the following week on Thurs. The amount of time in between sessions isn't a big deal, but she'll be out of the country.  My 1st thought was "what if I fall down, I'll be screwed...", and then I remembered that a year ago last June, I HAD fallen while she was gone... it was difficult, but I survived.

So what's my take-away from all of this?
1) limiting screen time - that was key for being able to DO on Sat.

2) When something comes up, my anxiety tends to push me into catastrophizing mode, but my thinking/self-management is starting to kick in after that. 

3) focusing on the positive doesn't mean shutting out everything else - that's not being human - it means pushing through the uncomfortable stuff.

4) I tend to underestimate what I can do - the anxiety of "Uh oh, something bad could happen" kicks in - but I'm not avoiding as much now.

If I really let myself dream, what I want is to make as few decisions/choices as possible about what I do/don't do, etc. based solely on my invisible disorders: vestibular, visual, AND Anxiety.

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October 12th, 2018 Rebuilding my social life

Like everything else about my rehab, rebuilding my social life is a process - I need to be patient.  To show myself I'm trying, I'm writing this down, and sharing it.

1) committee involvement - Values in Action (formerly the community service committee of our congregation) may not work, but I've spoken with the chair - a really nice woman named Lynn.  Maybe something this year will work - I'll see.

2) low-key social - I reached out to a lovely woman named Joyce, who has formed a new congregation club simply called Women Enjoying - WE.  I'm hoping to figure out some low key socializing with a couple women Joyce knows.

3) Music, or art therapy probably won't work, for a number of reasons, but this might be OK - I'm not interested in analyzing my art or music.  

4) possible connection - On the plus side, my vision therapist Ann has spoken to a patient of Dr. Margolis (my developmental optometrist) whom she doesn't work with, but who is a musician.  I'm hoping she and I will be able to connect by phone - I think we'd have a lot to talk about.

5) Out with Ron - I'm going to try a 3 p.m. matinee of a play at our high school, and a Shabbat service with Ron.  These will both present challenges, but I want to see how they go.  This will be in addition to going to the Chicago botanic Gardens with him.  These outings will be spread out. 

Some things won't work out, some things will - that's what happens when I experiment... I remind myself again to let myself feel the frustrations, disappointments of what doesn't work, AND the positive of what does... I need to keep trying.

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October 7th, 2018 Seedlings of self-compassion

I want to still notice the little stuff too - it will always matter -

checking my e-mail after being out to Adult Ed with Ron

walking the dog, and then taking a phone call

getting out for more than appts.

using a new spice (Allspice replaces Clove - a migraine trigger)

changing it up a bit when I play with Molly to keep her engaged

hand writing things I've done on a few days

experimenting when I play our piano keyboard

acknowledging my anxiety, ALSO letting myself feel positive

learning to load and unload our new (machine) dishwasher

Giving myself permission to take time, to not always get it exactly right, to keep trying, to know that trying doesn't mean I'm not trying to be present in each moment - there's SO much that's NOT mutually exclusive.

I think this is what the very beginnings - the seedlings if you will - of self compassion feels like.

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October 5th, 2018 4 not so simple truths

My husband Ron is a volunteer for a wonderful organization called Faith in Action, and I went with him to a gratitude party for the volunteers.  I was impressed with what I learned about FIA.  My take-aways -

1) human - having invisible disorders does mean that I feel frustration, disappointment, sadness along with a host of other emotions... but the point really is how much, and how long - EVERYONE feels these - we're human.

2) understanding & self advocacy - becoming isolated can make you forget that there are many, many people with all sorts of health struggles... this doesn't invalidate mine, but truly none of us is alone... and while it's true that others may not understand MY issues, perhaps *I* don't fully understand theirs.  So we need compassion, & to advocate for ourselves when necessary.

3) unknown - I'd like to think that nothing bad will ever happen to me again, but the truth is I really don't know.  I can't protect myself from everything.  I can recognize that this truth is uncomfortable, and know that I'll do the best I can to deal with whatever comes up.

4) what's possible?  A process - I ALSO really don't know what good things will happen - how much I can still improve... sometimes I think I do, but that's as impossible as knowing for SURE what's going to happen in my life... this is a process, it takes time, and growing awareness is super important.

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October 3rd, 2018 Re-learning, feeling anxious, keeping going

When I worked with Karen, in between Dr. Glad, and Christina (CBT), I did phone sessions, and basically crawled into a hole of depression... now I'm using phone sessions with Christina so I can go OUT - that's a positive change.
BUT, kind of scary.

The only way to do bite-size socializing is phone calls... going out doesn't feel like it can be bite-size... there ARE degrees of challenge - time of day, length of car ride, # of people, whether food is involved, what special planning I have to do.

I was out last night, and I'm glad I did it, but it was exhausting... there's no way to know EXACTLY what I'll have to deal with, and I realized that YES, I get anxious! And it's very uncomfortable - I don't like it.  Part of me REALLY wants to be that person who crawls into a safe little hole, but I know it's not a healthy, good place to be. 

I need to practice this - I never would have guessed that going out, socializing would be worry exposure - but it totally is!  I ALSO need to talk with Christina about how to handle some Qs - not profound questions, basic ones - "how are you?", "what have you been up to?".  The wheels turn in my head "what do they know about me, what do they really want to know?".  When I'm NOT there, I think, "OK, talk about pets, talk about your daughters...".

In the moment, there's so much to process - I'm working on OTHER stuff I never did before - vestibular and visual stuff, and oh yeah, anxiety.  But the bottom line is, I don't REALLY want to go back into that hole.

There's a lot to relearn - visual, vestibular, social. I remember Christina saying that eventually the anxiety becomes less, and I have a feeling that that will allow my brain to work better. SO, I've gotta keep going.

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