November 5th, 2018 - updated 10/19 - trying to describe my MAV experience

I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm shar...

Archive for November 2016

November 4th 2016 My support system...

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As I said in my last post, it's National Caregivers Month.  I don't, thankfully, need "caregivers".  Fortunately, I am still able to care for myself in fundamental ways.  But I DO have a support system that is really important to me.

I know that Ron (my husband) and I, given our "druthers" wouldn't choose my disorders.  But it's five years out now, and we are managing.  He seldom complains, whether he always "gets it" or not.  In the helping department, this probably isn't a complete list, but he drives me to the vast majority of places I need to go, runs errands, and schleps laundry up and down stairs (it's not the weight, but rather the balancing act).  Last but not least, Ron gives me a shoulder to cry on when needed.  I'm very grateful to have him in my life.

My daughters, college students who no longer live at home full time, were here in the beginning, which was very hard.  I know it was - and still is at times - really difficult to have a mom with significant disabilities.  But I think they know I do my best, and they also seldom complain.   I listen to them, help in ways that I can, and try to share experiences with them when possible.  They each help out and do what I ask, most of the time, when they are home.  They are becoming truly good human beings, and I'm proud of them.

My parents (and Ron) are the only family members, to my knowledge, who read my blog posts.  My mom and dad are always in my corner, rooting for me.  Concerned but also trying to simply give support.  That means a lot to me.  There are, to be honest, some family members who have drifted as time has gone by.  My parents also give much appreciated financial help.

I'm very grateful for my friends.  Most of my friends are online, and the majority of my social contact is online.  There are a handful of very special people whom I've never met in person - and possibly never will - but whose friendship I value tremendously.

Of course, there's my OT Joyce and VT Ann, who are both skilled, caring individuals determined to keep helping me.  Ann actually reads my blog posts, which helps her to understand my life outside of VT.  Dr. Margolis, my Developmental Optometrist, is one of the best doctors I know.

The Vestibular Disorders Association is not a single person, but a wonderful resource and I'm grateful they exist, to help educate and spread the word about these invisible disorders.

Thank you to everyone who is part of my support system. 

If you are struggling, please reach out!  If you know someone who is having a really rough time, please encourage them to reach out!  NO one has to get through this alone.

Here's a link to VEDA -

and here's a link to the National Suicide Hotline - 


November 1st 2016 It's your turn...

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I've tried to share about myself in the hopes that people will have some understanding of my invisible disorders.  I hope my writing is informative, honest, and hopeful - that is always my intent.  I plan to keep sharing snapshots of my world, but I'd like to cast a broader net.

To that end, to everyone who has read my pieces, it's your turn to speak out - I'd like to hear from you.  Tell me about a typical day, a success, or something that's a particular challenge.  Whatever you share doesn't need to be long, and if you don't follow me on FB (though I hope you do :-) ), you can comment on my blog site.  I always check for comments, and then you'd need to check back on the site for my reply.  You can also tell me you'd like to talk to me, to figure out what you want to share.  You can message me on FB - for those of you seeing my writing for the first time, my FB page has the same name as my blog site, Visible Person, Invisible Problem.   

I'd like to incorporate my readers' stories into future blog pieces.  I won't surprise anyone; we'll communicate, and I'll make sure I have your permission.  I may do editing, but I want to be sure I'm sharing what you want me to say.  I'll need to see what works best for me, and the person whose story I'm sharing.  If I get deluged, I won't share everything at once - I'll have to see what happens.  However, I'd really like to do this because I think the more stories we share, the more we can support each other AND raise awareness.  Supporting each other is important, but speaking out and helping people to gain a better understanding of vestibular/vision disorders is also really important.

Finally, please share stories about caregivers - family members, friends, medical professionals - anyone who is part of your support system.  November is National Caregiver Month, so I'm hoping to share some stories about the people who help you cope.

Thank you - I look forward to hearing from you all!

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