January 6th, 2019 neurological change - it IS possible

Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard ...

Archive for 2019

March 9th, 2019 6 things to remember

looking back at what I've written recently, there are some things that stand out -

1) in order to feel hopeful, you have to have a plan, & having a plan means having not only the perseverance to carry it out, but also the right team of professionals, & the financial resources.  I feel for those were not in this position.

2) I need to be honest with myself, but being realistic doesn't mean that a negative outcome is a given.  Especially if I learn along the way - learning means growth.

3) Gather info, think things thru, & be open to opportunity.  Let myself sit with information when I need to, but try not to get in my own way.
4) I am not a static thing - I'm a human being, which means what I can do today may change in the future - one day to the next, one week to the next, etc.- try to do the best you/I can.

5) keep communication open, not just between myself and my professional, but between the professionals themselves. I feel very fortunate to be working with my medical professionals.  It's important that I'm able to ask questions - for those reading this, if someone you're working with isn't open to questions, if at all possible, go elsewhere.

6) don't focus so much on where I'm going, on making progress, to the point that I can't enjoy where I am right now.  

The picture that goes with this post is of Molly - a pet of ours who puts a smile on my face every day.
Photo credit - Leena


March 2nd, 2019 More progress means hard work

I realized I'm minimizing how important it is that my eyes are now converging - my negative thinking still kicks in... it's frustrating that building endurance is a process - not something I think I'd really thought about, and yet it makes sense - learning a new skill is important, but building endurance so I can pull it out of my tool bag whenever I need it is also really important.

Which brings me to anniversaries again - reviewing my situation as May approaches make sense.  But thinking "well, I've been at this for so long, isn't it enough?"  isn't what I should be asking.  I said multiple times that my journey has not been linear - kind of the opposite actually. 
So the questions to ask are-

1) what's happening now?
I'm doing well, making progress - I still hit bumps, not every day is wonderful, but overall, I'm learning, growing, changing.

2) is making more progress a reasonable possibility? Yes

3) do I want to make more progress?  this last Q may seem odd, but in my post 1-6-19 "neurological change, it IS possible" - lists some things required in order for progress to happen.

If I'm being honest with myself, I want more than I have right now - I don't think that's my PTSD anxiety being demanding, I think it's how I feel. I wrote recently about what success looks like for me, & the one piece I still don't have is regular activities "out there," meaning not at home. I don't know what's possible, but I feel like I need to try - that means more rehab, & all that that involves.

I'm incredibly fortunate that all these years in, doing more rehab is still possible for me, due to all the support I get.  I wish everyone had this, but that doesn't mean I should feel guilty that I Do have that opportunity - it DOES mean that I should make the most of it...

Take advantage of doing with my daughters, husband, etc when I can, give myself breaks - everyone needs time off from work, right? - but I need to keep going.  I have to do what works for my neurological self, but I have to do the work. I don't think I'm quite ready to accept that where I'm at is where I have to stay.

Symphony is when sympathetic and parasympathetic are integrated... 75% means not expecting 100% - perfection


March 1st, 2019 integration... Let it unfold...

When I did this drawing - thinking of my winding journey, hence the twisting line & the arrows in different directions - it occurred to me how important integration is.

How well, how much integration there is between a variety of systems - visual, vestibular, sympathetic and parasympathetic, auditory, etc. - all these electrical signals (are emotions electrical signals?? what about body chemistry, biology?)... All kinds of different brain activity, neural activity... complicated is an understatement...

I don't know the answer - will integration be completed or will it be ongoing?  In bits and pieces?  I guess it really is an adventure, with good days and bad days and in between days... I know that my journey is not a linear one.... 

I remind myself again, that what I KNOW for SURE is today, right now.  I can't analyze this integration thing too much - I think I need to let it unfold.

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February 27th, 2019 Additional treatment? more improvement?

I saw Dr. Mirsky (psychiatrist) today, gave him an update. Told him I'm going to see my new ENT next Tues., that this doc supposedly has expertise with vestibular stuff, mentioned my hyperacusis.
Dr. Mirsky mentioned a medication that may help with the hyperacusis, & is supposed to help with visual vestibular problems, and helps with anxiety.

He said he'd start me on a very low dose so my body could get acclimated.  We agreed that I would talk about it with this new ENT, & then email Dr. Mirsky.  I also found out that another psychiatrist whom I trust uses this medication frequently. So I want to hear what this ENT says, but I may very well give it a try.

I'm cautiously optimistic that with revisiting the syntonic light therapy, and maybe an additional medication, there can be more improvement. 

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February 25th, 2019 I get it - physiology behind PTSD

I get it - the sympathetic nervous system is the fight or flight, the parasympathetic is the one that calms you down. 

When your brain is changed from PTSD, the sympathetic system gets activated too frequently, in situations when it really shouldn't, & is totally unhelpful, with resulting physiological symptoms - i.e. shallow breathing, or even holding of breath, rapid heartbeat etc.

I've felt so frustrated about the symptoms, separate from those from my vestibular migraine and vision disorders.  Now I understand - something about Dr. Margolis's explanation clicked for me - why it happens.

The idea behind syntonics - a special kind of light therapy that takes the light therapy used for seasonal affective disorder further - is to have these two systems (sympathetic and parasympathetic) work together better. 

Even if syntonics still doesn't work for me, it's a relief to finally understand PTSD.

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February 23rd, 2019 What success looks like for me

This drawing of words are some key concepts, ideas that I try to use from my CBT - cognitive behavioral therapy.  I have a much better understanding now, than a year ago, of my PTSD anxiety - as well as when depression sets in.  That's a good thing.

I listened again to my piece "some kind of success" (2-6-19). Success in the US tends to be measured by very specific, conventional parameters - money, productivity, etc. It's really easy to get caught up in that, but for me - & I think many with chronic illness/conditions/disorders - it's really NOT helpful.

What does success really mean to me?
1) manageable fatigue - being tired at the end of the day is OK, & needing to rest once a day is also OK. More than that on a regular basis is not.

2) brain fog - occasional brain fog - i.e. after a really special event - is okay. More than that is not.

3) basic functioning - being able to do daily tasks of living - cooking, laundry, etc. - with what I consider reasonable pacing is okay. More than that is not.

4) activities for enjoyment - listening to music, audiobooks, creative stuff, occasional activities with my husband, phone calls, etc. - with what I considered for myself to be reasonable pacing is okay.  More than that is not.

5) occasional special events - holidays, etc. Being able to do this with a certain amount of extra planning is acceptable.  Feeling overwhelmed by them is not.

6) Support/maintenance therapy (to be figured out), so energy/time for ???

My birthday, & the anniversaries of when I started VT & Feldenkrais, are all in May.  Rehab is time, effort, $ if you put it in the simplest of terms. More communication - particularly with Dr. Margolis, & my vision therapist Ann - are needed. What goals do they have for me, do *I* have, that make sense?

Looking at this picture - this life I've described - IS, I think, a success. Unexpected stuff can, and almost certainly will, get into the mix. My goal will be to deal with whatever that stuff is, the best I can.

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February 20th, 2019 Self-care, choices

As of March 1, I'll have been working with Christina - CBT - for 1 year... I've tried a lot of things, and I think I'm getting better at distinguishing my PTSD anxiety from my other disorders - vestibular migraine/migraine associated vertigo, IBS (which ties into my VM/MAV), & vision.

I've said that I don't want to make choices, but the reality is that everyone has to make choices - that's a part of life -& it's more a part of my life because of my disorders.  For me, making choices can be really complicated, & I don't like that - who would?

There are lots of reasons for doing things - feeling connected to others, productive, etc. - but self-care can never take a back seat in my life.  Taking care of myself is not being selfish, it's being smart, having self compassion... It's really the springboard to all kinds of other things.

I'm still learning, but I've also been on quite a learning curve ever since I got sick in September 2011, & I can apply all of that to my current life. Which means that sometimes, I have to make a choice that makes me feel a whole host of emotions. It's hard.

I still want to be open to trying, but there are limits to what is reasonable for me to try.  There are limits to what mixes with all of my therapies.  I'm also figuring out how much home therapy my neurological self can handle.  And I need to balance all of this out with living, & self-care so that I am as able as is possible for me to be. 

Ultimately, this is my story, my life - & a lesson I have to remind myself of, is that comparing myself to others, or thinking that others are judging me for my decisions/choices is utterly unhelpful.  I need to take all of the information, & do the best I can - which won't be perfect, & that's okay.

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February 17th, 2019 What's helpful, what's honest

I've learned this week that doing 2 things in 1 day is doable, but not something I want to do with regularity.

I have to limit screen time - both computer & iPhone.

I've learned that my irritable bowel syndrome (IBS - diagnosed 6/17 by my gastroenterologist, & apparently a common combination with migraine associated vertigo - MAV), is still a thing when overload happens. Yes, I have meds for it, & I know what's going on, but it's still another piece of my health package.

I still have a vision disorder, & cognitive processing (I wrote about this at some length in a piece posted 6-4-16) is still an issue.  Understanding what I read - unless it's my own writing - is very difficult when there's any complexity.

Christina (CBT) & I talked about how demanding PTSD Anxiety is - always wanting more & more - as if what you/I have is never enough. It's incredibly easy, especially since rehab is about making progress, to fall into this.

Not that making progress is undesirable - I still plan to use my Brock string on reasonably good days.  I'm still interested in seeing if some kind of prism in my reading/near glasses would be helpful.

People like to use the word limitations, challenges.  I think sometimes the word disabled is appropriate.  I want to be honest with myself, which means that I will keep trying, but also acknowledge that my life has changed.  I want to stop trying to be, get back, the way I used to be - that's part of the "more, more, more," & isn't helpful.

I've talked about my therapies ultimately becoming support/maintenance, but I don't know what that will look like, as I go thru changes not just neurologically, but in my life in general. Brains - people - are SO complex. I think my medical team has, & will continue to learn, on this journey of mine.

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February 14th, 2019 who knew?! brock string, prism... wow!

I did my morning Feldenkrais routine with Joyce yesterday - she smiled, said my balance had really improved... we talked about being able to work on more subtle elements, & especially synchronizing my breathing - I think this should have pay off, because there's times when my breathing isn't helpful.

In VT today, I talked with Ann about my iPhone - it's a whole new visual world for me... Definitely helpful...

Also, drumroll please - I got my OWN brockstring - see the pic? that's mine - because Dr. M said my eyes are working together! Converging! He said what I need now is to build stamina/endurance... I'm kind of in shock, but yeah.

ALSO, also, I think I'm actually gonna have some prisms in my readers - I tried it again today, & found myself, heard myself saying "I think I could adjust to this, it's different, but I think it would be better..."  Ann said she'd talk to Dr. M.
What's pictured is a kind used in VT... my readers will still look like readers, but with some prism, I think. 
And we talked about home therapy.... AND I told her I went to the adult ed. with Ron in the a.m. yesterday, & then saw Joyce - yeah, did therapy! - in the afternoon.... My PTSD Anxiety's saying "OMG, hold up, what the hell is happening?!" but yes, all this stuff... who knew?

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February 11th, 2019 What to explore next? Or "what color is my parachute, now?"

There's a book I've been thinking of "What color is my parachute?" - & yes, wondering what color mine is now -
I need ideas of what I want to try... so, back to my interests -

the arts
neurological rehab

I have animals at home, & I don't think I need to be around more.

I learn & share about neurological rehab - not really sure what else I could do.

People - phone calls, some congregation events with Ron, as well as CBG (Chicago botanical garden) - this provides interacting with people, learning/thinking about stuff outside myself, & loveliness of nature (CBG)

This is all good - nice to see "on paper," but something's still missing - which leads to -

Arts - I'm not thinking about teaching anymore, or doing music or art therapy, but eventually could I do a class??? something small, low key, so I could pace myself. I need to explore this.

The point of building my stamina is to be able to do more. If I'm ultimately going to have my therapies as support/maintenance - a life not so rehab centered - I need to find more to plug in.

I wonder if there's some other way - different from before, but still fulfilling - to have a mix of art & people in my life.

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February 10th, 2019 It's what's happening in rehab that matters

Sunday always seems to turn into a down day for me, so I decided in order to make sense of it, I'd write about it.

It's the day before you move into the week ahead, & I guess I think about what constitutes my life... it's still very rehab centered, & still more "home" centered, than "out there."

I've had some disappointments - not being able to find a volunteer opportunity that works for me.

It's hard living with the fact that I don't know FOR SURE if I'll find something that does work, & I guess I have to acknowledge that that's hard. It's hard to have a lot of disappointments.

My PTSD Anxiety still tells me "focus on the negative" which spirals me into feeling bad, into thinking about BIG stuff that's out of reach... & then it's hard to focus on my accomplishments.

Ultimately, my therapies will become support - maintenance, if you will - rather than the main events... that's what doing something that's a means to an end is about.  So, I have to try things in my therapies - CBT, Feldenkrais, VT - to see how much more progress I can make.

My accomplishments, as I live a life with disabilities, are different now.  But that doesn't make them any less real, or valuable. I know that's true, even if I don't always feel it.

Opening myself up to the possibility of more disappointments is difficult, but I have to do it in order to figure out this new life of mine. 

And I have to remind myself that there's ALSO the possibility of success.  And what's important isn't so much that I'm still living a rehab centered life, but what's happening in my rehab - which I'm so lucky to still be able to do! The answer to that question - what's happening? - is a LOT.  And that's good.

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February 6th, 2019 amazingly, some kind of success story

I've traveled a long way in 7+ yrs, but in a way, even longer in the past yr or 2 -

I remember when I couldn't picture myself doing 3 therapies a week, & certainly not showing up in person for all of them - CBT was often by phone.

I remember a yr ago, the idea of needing distance glasses, always using reading glasses for near work, & wearing sunglasses overwhelmed me - & now I'm doing ALL of that!

I'm not running away from VT - even thinking about incorporating it at home more consistently.

My mind is opening up - my thinking is changing, I'm trying, in small ways, & not so small - with scheduling, etc.

I realized I need to let go of how I thought my life would look - music, volunteering (I don't want to volunteer at something just to do it).

As I continue to improve, I need to keep my mind engaged - giving space for my emotions to breathe is important, but I don't want to provide a playground for my PTSD Anxiety (or Depression for that matter), so mindfulness, doing with intention, mental engagement matters.

I'm learning to recognize when my PTSD Anxiety gets triggered - which is often - & I'm learning to respond differently, as in "yup, you've shown up, I'm not surprised" - this is very much a work in progress, learning to live with PTSD Anxiety without letting it rule me.

Tolerating uncertainty - or rather learning to  - I don't know exactly what things I'm going to try, what will work for me. I'm going to see what opportunities present themselves to me, what I come up with.  PTSD Anxiety trigger - not knowing? yup, definitely.

Hopefully as I continue to make progress with my therapeutic goals, I'll figure things out. As I said in "Why I share my story?" (1-6-19) my story's ongoing - I don't have an ending yet. I don't like that, but I have to live with that.

And yet - & my PTSD Anxiety does NOT want me to claim this idea - amazingly, whatever I'm building could actually be good, be some kind of success story - different, but still a success.

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February 4th, 2019 Forward focus - stepping towards progress

What I know -
1) it's really good that I'm ready to think about what makes for a fulfilling, satisfying life - PROGRESS!

2) I have 3 wonderful pets at home, & I'm happy to take care of them, but I realized I don't want to spend 2 hrs a week taking care of more cats.

What Cindy's doing at PetSmart is a good thing - within an extremely small space, & I'm curious about the facility at Petco, so I'm going to check it out.

3) what I really want/need is connections to people... some of this is by phone, some hopefully in person.

I like doing more things with my husband, Ron -
I'm going to attend another Shabbat service with him.  There's also a program on Wed. called Lunch & Learn that I'm going to try, again with Ron.
Getting reconnected a bit with our congregation would be very nice.

4) I'm not ready to do 2 outings in 1 day, but by doing the above, I'll be doing 4 or 5 outings in a week more frequently - PROGRESS

5) volunteering is a good thing to do, & I may find something that feels right for me at some point, but not now.

6) Focus - forward - I need to focus on what's good for me NOW.  My life may look very different, eventually, from what I'd once thought would be, & that's OK.  That recognition in itself is, actually, a BIG step of progress.

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February 3rd, 2019 volunteering - 1 more step in the process

Our cat Molly

I checked out Adorable Adoptions - the cat adoption center housed in PetSmart, Northbrook.  It's a small enclosed, space that seems pretty quiet. I talked with Cindy, & Ron helped me fill out a volunteer application.

Once home, I gave more thought to when I could do this - keeping in mind this is about challenging, not overwhelming. I said I'd get back to her about when I'd start - doing once a week, for 2 hrs (instead of 3, which she's OK with) in the afternoon (I don't want to have to get there at 9 AM).

There's notes that sometimes get left, with instructions, & there's a page of volunteer basics posted on the wall - Ron can read the thing on the wall to me, but how much other reading will there be? I saw a couple notes - this would definitely be a challenge.

Left a message for her - have some more Qs-
I'm gonna ask -

1) is there a bottle I can use to then fill water bowls? There's no water in the adoption space, & I don't want to walk around balancing a little bowl of water.

2) what do I do if someone wants to adopt?  we talked about cat care, but not adoption

3) she had an iPad - is that hers, or do I need to deal with it?

4) is there a phone I'd need to answer?

So it was one more step - this is a process. I hope in sharing this, it's helpful for others.  This volunteering thing feels like a big deal for me – I show up for my therapies, but this feels different.  Eventually doing it when I've also got an appt. in the a.m.  This is a "try."

I've also decided I'm going to check out the Paws Chicago facility at PetCo - I want to know what my options are.

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

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

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

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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January 24th, 2019 Challenge but not overwhelm

I've been thinking about doing this sign, decided it was time...

Anxiety exposure = extreme weather
I can't control weather - accommodate is necessary, do the best I can

Anxiety exposure = exploring volunteer options
1 step at a time, it's a process

Challenging myself is hard, my Anxiety's telling me not to... but I remind myself that if I don't succeed, I won't be any worse off, & I can learn from ANY experience - good, bad, & in between... AND maybe I will have some success... 

My goal can't be to avoid/eliminate ALL symptoms - including ALL Anxiety... I have to tolerate some discomfort... sucks, but true.

Recent months have shown me I CAN accommodate, & I CAN have some successes.

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January 23rd, 2019 Work up to volunteering

Maisy (didn't e-mail her pic LOL)

I thought I'd share the e-mail I sent to the volunteer coordinator at Orphans of the Storm -

Hi Pam, I heard you were out sick today, & that I should try e-mailing you.

I spoke briefly with you about a week ago about being a greeter at orphans of the storm.  I thought I'd give you a bit more info, & see what might work. 

I've got some health limitations, & am trying to get back into volunteering.  I would not be able to be in the cat room, & might need to take breaks, where I'd be able to sit down. 

I've been a dog owner for nearly 12 yrs, & a cat owner (all 3 rescues, 2 from Orphans) for about 18 yrs.  I've dealt with health problems with all of them. 

If I could work up to an hour, would you be able to accommodate me as a Greeter, & socializing with the cats in the room where the cats are in crates/cages? Taking them out, & giving them attention?  I don't know if I could eventually do two hours.

Please let me know - you can reach me at (gave home ph no.).
Thanks - Tamar Schwartz

I'm also going to go with Ron to check out the cat adoption center at PetSmart - I've never been there, & I'd like to see it, hopefully talk to someone, see if they're open to accommodating me.

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