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...

Archive for 2014

December 28th 2014 Attitude and what I CAN do

By | Published Sunday, December 28, 2014

When I write, I try to be honest and realistic, but also ultimately to convey hope and a sense of possibility.  That's really how I try to approach living with invisible disorders.  I don't believe a positive attitude causes miraculous healing, but I DO believe a hopeful attitude helps.  There's a ton of research about health and attitude, but regardless of research, I know that feeling hopeful, even optimistic helps me cope.  That said, I don't think you can get to the other side of feeling down or angry or whatever, if you don't let yourself feel all of that; that's definitely how it is for me.  I feel like the trick is not to hold on to, get really stuck in those hard, painful stretches.  I have to let myself feel, and then I can let it go.  Sometimes it takes a conscious effort, but for me letting go needs to happen.  After I move through and let go of all the tough stuff, I step back and take a look at where I am. 

Once I let go, I can think more clearly, see where I am, and if there is anything positive to hold on to.  I sent an e-mail to my parents recently talking about Feldenkrais, and what it's done for me.  I still don't completely understand how Feldenkrais works; I certainly can't do on a neuromuscular level what Joyce does for me.  But I think I finally get some of the basic principles, and I know it works and is helping me.  All my small steps really do add up, just like toddlers learning to walk.  Dr. Glad always says that baseball players never have perfect batting averages, and if the rest of us could adopt those same expectations, we'd be a lot better off.  I also was messaging a new and wonderful FB friend who is really suffering, and wished I could help her.  It made me realize that even with all the difficulties, real though they are, I have to really pay attention to what I can do. 

When I don't feel good or I'm frustrated, I tend to jump to worst case scenario conclusions way too easily, as I think a lot of people do.  This tends to head me down a road of worry and anxiety.   As I often remind my daughters, life is not black and white, one extreme or the other.  Even though my situation is not a best case scenario, that doesn't necessarily mean it's a worst case scenario either.  There is a middle ground.  In my middle ground there is stuff I can do.  I'm not talking about what I'm grateful for, although that's important.  I'm talking about giving myself credit for what I CAN do, for what is a direct result of the work I do, the effort I put into rehab.

So here is some of my "I can do it" list:

My body recovers now from working really hard - a definite result of doing rehab. 
I am physically able to do basic cooking.  This results in healthy meals, which adds so much to my well-being and that of my family.  
I can write this blog - this is a big deal for me.
I can listen to articles online, and yes, I need to use Google Translate, but being able to process the info is a big plus. 
I'm able to listen to more audio books than I used to. 
I can read some of the Sunday Comics.
I can read the headlines and small bits of articles from part of our local paper so I know the basics of what's going on in my own back yard. 
I'm able to play my flute, and listen to music. 
I can walk our dog with my daughter, hold the leash myself, and talk with her while we walk.  This is huge.
I can watch a movie on our smaller screen TV, with an intermission.
I'm able to do some basic housework in addition to cooking.  An example of viewing this positively instead of negatively is that I'm choosing to think about the housework I CAN do, not the tasks I need our cleaning service to do.

I was able to celebrate Chanukah with Ron and Leena and Cara.  This meant singing two short songs with them, and not having trouble with the sound of my own singing resonating in my head. 

I'm thinking about what I will do when Ron and the girls go to the Field Museum.  Not just the regular stuff, but about what I can do - with writing or music - that I'll enjoy.  Regular stuff is necessary and fills up time, and I'm glad there's regular stuff on my "I can do it" list.  I've said before and I still believe that it's good to be fundamentally functional, but no one wants to fill time with the basics, all the time. 

Though not an accomplishment, it's worth noting that I do feel fortunate to live in an area where the medical care that I need is available to me.   Also that I have health insurance and financial support to cover all the expenses.  My situation would otherwise be vastly different.  I truly feel for those who struggle with these two pieces.  Knowing what you need, but not having access and/or not being able to cover the costs is terrible.


It's easy, very easy, for me to dwell on my limitations, what I still need to work on.  I don't know, maybe it's human nature to notice what you're not happy with, what needs to be improved upon.  In our incredibly fast paced world in which change seems to happen at warp speed, it's hard not to compare myself, my life, to others, whoever the others may be.  People like me, who are working to regain their health in some way, have to be careful who we compare ourselves to.  Everyone, I think, measures and sometimes judges their personal success, individual accomplishments. It's easy to forget that success can be measured in so many ways.  I remind myself that for me it's about the effort and progress I make, and I know my daughters have, and continue to learn from me on my journey.  I'm going to mentally hold on to my list of what I can do, and keep it close at hand.  For me, and anyone in a similar situation, success isn't about speed, it's about continuing to add to my "I can do it" list.  

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December 22nd 2014 After the party

By | Published Monday, December 22, 2014

Sometimes I hate my invisible disorders.  That's when I feel like there's a volcano of emotion erupting inside of me.  An explosion.  I hate how hard some things are, I hate that Ron and Leena and Cara have to live with it, these disorders that are now part of me.  I hate what I miss out on.  I hate that even if I'm doing something, it's not how it used to be.  I have to think about certain things on a conscious level now, and it's gets exhausting. 

Parties just aren't supposed to be so much work.  I've learned that 17 people, nearly twice what Thanksgiving was for me, is too many people for me to be able to participate in conversations.  Too many conversations going on at once, too much to process.  I just can't do it right now.  I was touched when a cousin told me she'd read my blog, but realized she didn't quite get it when she showed me something her daughter had written.  I handed it back to her, and I'm not sure she heard my words as I gave it back.   I can't read a full page of words.  I'm certainly not going to try reading anything on a page at a party when my system is working on so many levels. 

Bodies can be so goddamn weird.  I know my team of professionals wouldn't say it's weird, but it FEELS weird and confusing and complicated.  Menorahs are beautiful, and if I remember to "look soft" I can look at it, but not for too long.  The candles dance, which is cool, but makes them hard to look at.  That's how it is for me.  I'm glad I could settle down to get to sleep the night of the party.  The fatigue I feel is immense, not so much physical as mental.  It's like my brain just shuts down, refuses to process any more information, even just one little bit.  I'm glad that I know I can recover, and I know I need to let myself feel the frustration, but I hate it.  I hate that I can't tell my nervous system to just do what I want it to.  Well, I can but it won't work. 

I wonder how much therapy I'll have to do.  I wonder how long, how much work it will take for my current reality to slowly morph into something that feels acceptable to me... I know that no one knows the answer.....

"It's a beautiful world and I can't see it"  - that's how I feel at times - as if it's a wonderful world, but it's out of my reach, and I can't live it the way I want to now....experiencing some parts of it is beyond me.... so what did I do while feeling all this anger, frustration and sadness?  What did I do with myself while I was in this hole, to heal myself, pull myself out.

I wrote in my journal....I can let the words spilI out any which way because no one else will read them.  I played my flute, letting the music burst, fly out of me.  Then I played from memory, "Where is my light?" a song from our congregation -
"Where is my light, my light is in me, 
where is my hope, my hope is in me, 
where is my strength, my strength is in me, 
and in you, and in you...".  

This song is a favorite of my rabbi, and some people may tire of it, but it's a lovely melody, and the words, when I really think about them, move me.  My light, my hope and my strength - I really need to draw on all of that when I'm struggling.  But I like that the last part is about being connected, that I/we need others to help us.

Then I let my music tumble out again....then I went on Facebook.  I messaged a couple friends.  I had a lovely surprise when a friend who was in the neighborhood dropped by unexpectedly, so I took my afternoon walk with Cosmo with her.  Doing this on a day when I'm not fully rested was a stretch, but it was worth it.   Then I watched some videos that were posted which really fit my mood of needing to try to find a better perspective, remind myself of what I can do...focusing on the positive is extraordinarily hard to DO sometimes.... but I have to keep moving, because staying stuck is a really bad option. 

So I wipe away the tears, take many deep breaths, and life goes on.....I thought about whether or not to post this, and obviously I decided to share it.  I remind myself when I'm feeling jealous of those who LOOK fine, that they may have their own invisible struggles.  I think about people who really don't have major problems at the moment, and hopefully one or two of them will read this and be reminded to be grateful for what they have, and compassionate to those less fortunate.  I recently read a beautifully written, very honest blog by a young woman battling with Depression.  As I listened, I thought about how people don't understand invisible disorders unless those of us living with them share the moments when we struggle, and then manage to pull ourselves forward. 


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December 17th 2014 Rehab - Effort and progress

By | Published Wednesday, December 17, 2014

Every two to three months I have consultations with Dr. Margolis, the Developmental Optometrist who supervises my vision therapy.  He calls them Progress Reports (PR) because he wants to know what kind of progress I'm making.  I had one recently, and it got me thinking about effort and actually making progress.  Although I get good news, we also talk about what I am still struggling with in my life, as well as whatever part of therapy is difficult for me.  We talk about what needs tweaking, or changing.  I often end up with mixed feelings after these PRs.  I feel good about my progress.  But I'm also reminded of, and feel frustrated about my limitations, the things that once were simple, and now are difficult.  When I feel like this, sometimes I find myself thinking "well, what if I just said enough rehab?  What if I decided to stop?". 

Comparing myself to when I was really really sick to the present, I can see very obvious improvement.  But more subtle comparisons can be harder to see, to feel, to appreciate.  Those times when I lose sight of those subtle improvements, that's when, if I let myself, I can get discouraged.  That's also when I hear Dr. Glad's voice in my head saying "that subtle stuff, that's what rehab is really about."  It's not only about going from feeling horrible to better, meaning feeling better rather than feeling horrible.  That's important, but it's not the whole picture.  The whole picture of rehab is about the work, the effort day by day, week by week over the long haul.  Rehab is about making a choice to keep going, to keep making progress.  Ultimately even though having wonderful people to work with is crucial, it really comes down to me.  I think it's the same for whoever out there is doing rehab of some kind.  It comes down to the person DOING the rehab.  It's saying to myself "I'm making the choice to keep working, keep making an effort." 

Then I start thinking about why I do my rehab, why I make an effort.  I think about what effort really means, because rehab doesn't work, isn't successful without lots of effort.  I was really struck by the definitions I found when I looked up the word "effort."

exertion of physical or mental power

an earnest or strenuous attempt

something done by exertion or hard work

There are a few other definitions, but these seemed to fit the best.  The word "strenuous" jumped out at me, because that gives me an image of really hard, taxing work.  An image that definitely fits rehab.  But the one that really got me was "exertion of physical or mental power."  An exertion of power.  Exertion is exactly how it feels, but the other word is important - "power."  I tend to think of rehab as an activity that drains me, because it takes, in my case mostly mental, power.  But rehab also gives me a kind of power; it enables me to work through my problems, albeit very slowly.  Especially when I work to be able to do more IN rehab.   Doing more, being able to do harder, or new activities in rehab is important.  That gives me power, enables me to keep moving, keep going forward. 

It's really important for me to keep that idea of power, of being enabled, in mind right now.  This is, honestly, a difficult time of year.  There are special events for the holidays, connected to school, if you have school age kids.  There are family events, and people plan special outings.  I understand that all these things are part of life, an important part of life.  But I can't participate freely the way I want.  I have to miss out on some things, figure out what I can manage.  I attended our congregation's Sunday School Chanukah party, and our family party which we are again hosting, is coming up.  I'm glad that these are two events I can participate in.  I remember the first year I was sick I opted out of hosting our family party, and in fact did not attend it, so to be a part of that is obviously good.  Family members pitch in to make the party more manageable.  I'm getting better at asking for what I need, learning what works, and I do my best to manage whatever I have no control over.

Being in a room with a lot of other people is a challenge for me.  There's a lot of different stimulation; noise, movement, the general hub-bub of people gathered together.  If I know a decent number of people, and the location is familiar, that helps.  I try to concentrate on what I can do, as opposed to whatever is challenging.  At the same time, being aware of what is difficult helps me to manage, to cope with whatever is difficult.  Even if it's just saying to myself "OK, this is hard, and you know WHY it's hard, but you'll be OK."  When I've chosen to go to something, or do something, I go with my choice.  I don't tell myself "you shouldn't have done this/been here, you made a mistake."  I know that part of rehab is taking some calculated risks.  The benefit needs to be worth the cost.  I don't want to do something that will make me feel really bad, and will require several days of recovery.  But doing something that really tires me out, and needing a very chill day the next day is acceptable.  It's impossible for me not to think about what I used to be able to do.  It's also impossible for me not to think about how some things that once were easy, are now difficult for me to do. When I do miss out, I let myself feel sad, even angry, because I figure if I don't, I'm asking myself to be a robot, instead of a feeling human being.  I tell myself again that every small change in what I handle counts, and I make sure to note it in my progress log. 

I don't understand everything about vision or my vestibular system, but I do understand much more than I used to, and know why certain things are difficult for me.  Sometimes understanding means a problem can be solved, but for me, understanding, knowing, doesn't fix my problems.  I need to leave the figuring out what to do, the how to fix it part up to the professionals I work with.  I know that Ann and Joyce and Dr. Margolis and Dr. Glad won't give up on me.  That's a big part of why I stay in rehab, to have my team.  I also realize that the most important person in the equation is me, so I tell myself that above all, I can't give up on myself.  I have to keep making the choice, over and over and over again, to do the work.  To put in the effort at rehab, and at home, and wherever I AM able to go.  That's the only way I'll keep making progress.


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December 10th 2014 Advocacy Helps Everyone

By | Published Wednesday, December 10, 2014

19.  That's how many Ambassadors VEDA has now.  This includes several outside of the U.S. , and as a group there has been quite a range of activities in the few short months since the Ambassadors Board began.  People tend to think of high officials when they hear the word ambassador, but an ambassador is also a representative for something or someone.  To me, being an Ambassador for VEDA means that I'm an advocate, a voice for those with invisible disorders.  Part of that to me means being a kind of educator.  My degrees are in psychology and English literature, with a Master's in Human Service Administration, not Education.  I don't think my education was a waste of time by any means, but sometimes degrees aren't all that's needed. My thoughts and experiences are now colored by, affected by my invisible disorders, and what I learn through my therapies.   As an Ambassador, I'm sharing pieces of my journey. 

There is no shortage of info to take in, in this vast, interconnected world.  Everyone makes choices about the new information they take in, process, absorb.  I spoke to someone recently who said she doesn't follow the news, knew nothing about what happened in Ferguson (this was prior to Garner's death).  To my knowledge, she doesn't have any health or other major issues going on, so I have to admit this surprised and bothered me.  I know there are others who follow issues, whether political or social, more closely than me.  I'm sure there's plenty of news (especially due to my vision disorder) that I don't absorb, but I do try to be somewhat informed about major stories.  I care about the racism that clearly still exists in the States, as well as what appear to me to be serious problems with police and our justice system. I've had conversations with my daughters about very real problems, as well as what's good, about our school system.  I share posts on FB about these, and other issues I care about.  But in the end, there are many issues I don't personally feel qualified to write about in depth. 

Back to being a VEDA Ambassador.  I do feel qualified to write about various issues related to invisible disorders.  My own medical journey to find answers, actually living with invisible disorders, and living with someone with an invisible disorder (Ron has Bipolar Disorder 1 with Anxiety) qualify me.  I've had important conversations with FB friends, and people connected to VEDA dealing with living with invisible disorders.  I talk to my therapists, and am constantly putting more pieces together.  I learn from all of this, and be a better advocate.   Many invisible disorders are complex, and the medical community still has so much to learn.  A lot of that knowledge can come from medical training, which is important and needs to improve.  But it also needs to come from feedback from patients, the ones actually living with disorders, looking for accurate diagnoses and effective treatments. 

Education doesn't just happen in the classroom, although what happens in the classroom is really important.  I asked myself the other day what the goal of education was, and yes I looked up the word "education."  Here's the definition:

"the act or process of imparting or acquiring general knowledge, developing the powers of reasoning and judgment, and generally of preparing oneself or others intellectually for mature life.
and
the act or process of imparting or acquiring particular knowledge or skills, as for a profession."

Formal education is important, but in addition to a profession, I think a lot of the above can be applied to advocacy, trying to informally educate the public. Advocacy can create change in a variety of ways, and that creates progress.  Someone with a well-managed invisible disorder, rather than mainly needing to be taken care of, can be a functional member of their household.  That person can also contribute, even if they don't have a paying job, in their own little pocket of the world.  Despite this, there are times when I feel like advocating for people living with invisible disorders, being heard, is a strange sort of competition.  With so many issues worthy of our attention, it makes it hard to hold anyone's attention long enough to really have an impact. 

That said, I also feel that in the end advocating for change, both in attitude and in action really does pay off for everyone.  People with vestibular, balance or vision disorders (just to name a few) want not just to be heard and understood, but to be contributing members of society.  Everyone wants to have purpose, to feel valued. Enabling people to work, to be independent is sometimes complicated, requires some problem solving.  I've been listening to "Think Like a Freak: The Authors of Freakonomics Offer to Retrain Your Brain."  None of the ideas that they've presented so far sound freakish, and it is not, in my opinion, brain re-training.  It's more about thinking in a non-traditional way, getting past emotions to think clearly and logically, and figuring out how to deal with problems.   

I said that to be an Ambassador, an advocate, means to be an informal educator.  But I don't think anyone can be effective as an advocate if you leave compassion at the door, and only think in practical terms.   If you don't care, there's really no point in being an advocate.  I'll give one more definition here, for the word "compassion."

"a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering."

The phrases in this definition that got my attention were "stricken by misfortune," and "desire to alleviate suffering."  There's no question when I look back on my worst days, or comments that I've seen posted online, these words fit those with vestibular and balance disorders.  There are other invisible disorders that unquestionably also fit.  It's one thing to be bedridden for a few days with a nasty virus.  It's quite another to spend large portions of your days, for weeks, or months in bed.  Once I found the right therapy for me, when I first worked to get more mobile, I walked down my driveway.  Then I began going down my driveway, and walking one or two houses down the sidewalk.  I gradually increased, adding one or two houses every few days.  Regaining mobility had a huge impact on how I felt about my life.  I don't think about this all the time, but remembering occasionally isn't a bad thing.  It reminds me on my bad days now, to keep perspective, and it reminds me why I want to advocate for others to make progress.  A therapist once told me that people can get what she called compassion fatigue.  That if there's too much demanding emotional attention, people either tune out, or show a bad attitude. 

I have to believe, despite change coming slowly, "compassion fatigue", and all the issues demanding attention, that it's worth it.  That as a VEDA Ambassador advocating for those with invisible disorders, I do get people's attention.  I don't begrudge people speaking out about bullying, political problems, the environment and more.  And I want to be informed, so I absorb what relevant, reliable information I can, and try to learn from others. But I want to be an effective advocate, which to me means writing about, and advocating for what I know and personally experience.  People with invisible disorders, because I feel very strongly that we need a voice.  Good health is an incredible asset.  During my first year of illness, when I spent so much of my time in bed, I was keenly aware that I wasn't productive, and I hated it.   Now I want doctors and anyone who deals with people with invisible disorders to learn, pay attention, gather information that will help.  People who are suffering need to be heard, along with all the other problems in this incredibly complex world we inhabit.  If everyone who cares about something speaks out, there is a very powerful collective voice for change.


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December 2nd 2014 Stigma separates, isolates

By | Published Tuesday, December 2, 2014

The meaning of the word stigma is powerful.  I looked up the dictionary definition, and here's what I got:
1. a mark of disgrace or infamy; a stain or reproach, as on one's reputation.
2.  Medicine/Medical.  a mental or physical mark that is characteristic of a defect or disease:

Look at those words: "defective, diseased, stained, disgraced."  These definitions make me cringe.  The opposite of these meanings are constantly promoted in various forms of media.  Advertising promotes perfection, including hiding any imperfections, or flaws, and how to look young forever.   I think it's easy to understand that anyone with a problem might worry about how they'll be treated if they are "found out."  No one wants to be perceived as different, or "weird."  I don't think people always intend for others to feel  stigmatized, but I do think that people don't put themselves in other people's shoes enough.  I believe that many are so uncomfortable with problems, they want to keep their distance.  This distance makes the ones with the problems feel separate, bad, stigmatized.

It might seem strange, but our cat Maisy makes me think about stigma.  She has been a part of our family for about five months now, and is strong and healthy.  She is a purring machine, adorable, loving and fun.  A striking Tortie cat, she has now doubled her once thin frame, and is getting acquainted with having a body.  I watch as she moves, reminding me of a baby or toddler, rolling over and back again on the floor.  I wonder what she experienced in her stray life, and how it affected her to be so malnourished. She alternates between chasing her tail and cleaning it, sometimes staring at a wall.  She still hates jumping gates (we have a few to keep Cosmo, our dog out of some areas).  Despite numerous times coaxing her, she remains fearful of going through the pet door in the basement door.  Maisy somehow is never around when the front door opens, and runs away in fear when the back door opens.  I wonder if any of this is why she was a stray in the first place.  

I know cats, and people, can be quirky.  But I have a hunch if Maisy was a human, she'd have some kind of diagnosis.  If a diagnosis is treated successfully, people can lead fairly normal lives.  I also know that lots of people have undiagnosed or misdiagnosed problems.  Suppose there is a diagnosis, but treatment isn't available, or not completely successful?   If  Maisy was one of those people, what would her life be like?  Would people think she looks fine/normal, but get uncomfortable interacting with her, and judge her?  People with problems experience interactions that make them feel bad about themselves.  And there doesn't have to be a conversation; I think it's the vibe of discomfort, the look on someone's face that can sting the most.  Disorders, whether invisible or not, are generally not contagious, but I think there's a sense of "that could be me," or "I'm glad that's not me."  Sadly, this means people keep their distance, and those with disorders feel disconnected, isolated. 

On the other side of "looking fine," I think people with invisible disorders worry about misperceptions.  Dizziness from a vestibular disorder may make someone look drunk, or nauseous.  Balance Disorders, which involve more than the vestibular system (inner ear), can also create embarrassing situations.  In either case, someone may be holding on to something, or leaning against a wall.  They might be using so much energy to function that having a conversation is limited - it takes too much energy.  Something as simple as sitting with people in a room may be a lot of work.  Walking unassisted may take effort, or dealing with elevators or escalators, just to name a few possibilities.  I've been in situations where I felt awkward, felt like I needed to be careful, put effort into compensating so that nothing appeared to be wrong.  If someone's worried about how other people will react to their behavior, and they're not confident they can handle various pieces of a situation, they may just avoid doing things altogether.  Obviously this is very isolating, which feels lousy. 

I'm not happy that I have invisible disorders; sometimes I feel as if I'm now part of an odd sort of club.  In this club, there are some people who are too consumed with whatever they're dealing with to think much about others.  I've been there and I understand that.   Whether they have the energy to extend themselves to others or not, most members of this club are fairly consistently compassionate towards others.  Unfortunately, it seems to be human nature that unless you experience something, it's hard to really know how something feels.  Even if I don't have the same problem as someone else, I understand health struggles.  But I wonder if people don't stop and think enough, use their imaginations.  Because of my invisible disorders, I probably spend more time than average not doing something.  Sitting and eating without reading, listening to whatever, or watching something on a screen.  Granted, I'd like to be able to do some of or more of those things.  But I wonder how often people just sit and reflect.  I could say  it would be a good thing if everyone had a close relationship with someone who has an invisible challenge, but the truth is, most people probably do.  They just don't know that they do. 


Of course, the club isn't real, it's rather my sense of how people are divided.  You don't have to have a problem, be a part of this imagined club of mine, to expose yourself to experiences so that you know what it's like on the "other side." How hard is it, really, to stop and think, take in a person, move past the moment of noticing whatever makes you uncomfortable?  Is it really so difficult to be open to learning from whomever you encounter, just as you would from whatever experiences you have?  Some people may be rolling their eyes, and saying "that sounds so cliche."  That I'm on a "soapbox" talking about how knowing people coping with problems can make you a better person.  I'd say to them that I don't care if they're rolling their eyes, if they're also thinking a bit more, just for a moment, about how they treat other people.  The girls and I have all commented that Maisy is lucky she found us, lucky she found a family that doesn't mind the fact that she's different.  And I wonder how many families, how many people are accepting of different, of those who don't fit in perfectly.

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November 24th 2014 Noticing what's positive

By | Published Monday, November 24, 2014

Living with my invisible disorders is difficult.  My psychologist, Dr. Glad, tells me that effort counts, and I often think about that.  My daughter Cara remarked recently, watching me get set up for something, that "it must be so much work for you (me)" (not an exact quote).  There's definitely an element of work, of effort, that I deal with.   I use hi tech software and hardware, to help me use my computer, and to listen to audio books.  I've talked about my therapies, how I'm always working to make progress.   But in the meantime, I'm living my life right now, which means coping with my challenges.  All of which is why noticing, and finding, the good in my life is so important. To me noticing good things doesn't mean only special things.  Life is full of ordinary regular stuff, and I don't think that's bad.  I remember when unloading the dishwasher, or hanging up clothing from the dryer was a challenge.   Actually doing regular chores, projects, or whatever, can be a reminder that you can DO regular activities. 

I wish I didn't have to think as much as I do about the structure of my days, and weeks, and sometimes I get very frustrated that I need to.  But when I think about how I spend my time, I also try to remember to ask myself "is there enough good stuff?".  Of course, good things can vary quite a bit from person to person.  I don't just mean positive things that are big, obvious, and easy to notice.   I also mean the little day-to-day small pieces that add up.  I have a progress log that I started a little over two years ago.  I put down the big successes, like that I was able to attend the high school performance of The Importance of Being Earnest, or visit a college with my daughter.  But I also try to put down small things, like not needing as much of a break after dinner, or that looking from my personal calendar to the one on the kitchen wall is easier.  Does that mean that I can do these things symptom free?  No, it doesn't.  But that's OK.  If there is ANY improvement, it's still positive, and I get to put it on my progress log.

A Facebook friend asked me not long ago what I used for an anti-depressant, and I said "music!".  Music is huge for me, a major positive in my life.  My favorite quote about music is "music is the sound that feelings make."  Playing my flute allows me to express myself, and I make sure to play every day.   It's always been meaningful, but is especially so now because I remember when I couldn't play.  Sometimes I play a little bit a second or third time, and just listen to the notes that float out of my flute.  Ann asked me if I need a lot of breath to play.  I do, but it's different than when I do mindful breathing to relax.  When I play, I think about how to breathe so that I support the tone so that the note speaks the way I want.  I want to be aware of my breathing, but I'm focusing on making music, whether it's something from memory, or just playing whatever notes or rhythm patterns fit my mood.  

I also listen to music.  I listen during the day, but I make a particular point of listening at night.  If I forget, and am too tired to listen when I remember, I feel like something is missing.  Music really is food for the soul.  I created a YouTube channel when I was giving private flute lessons, which was fun - making the videos as well as teaching.  I don't know if I'll ever go back to teaching, but I'm pretty sure I'll record myself again and put it out there for whomever to hear, just for fun.  Music is wonderful for private times, but also wonderful to share.  So, although I'm not gearing up for something big like a performance or to attend a concert, clearly music counts in the positive vibes column.

Writing is definitely another positive element in my life.  I first put bits of my writing online a few years ago when I wrote about beginning to play my flute again.  I love the nuances of language, how words can have slightly different meanings, add texture and depth, carry weight, and power.  When my writing stirs up difficult emotions, it's still ultimately a good thing for me, sometimes even cathartic.  Writing is an amazing process that helps me put the puzzle together, think things through, figure things out.  I really need to write, to let the words tumble out.  As I said in a previous blog, I can't write a huge amount at a time, but I piece it all together, bit by bit, layer by layer.

People and relationships have always been important to me, so anything - in person or on the computer - that connects me to people I care about is good.  Of course spending time with my family is a positive.  Ron is generally quieter than me, so I especially enjoy having conversations with him and seeing him laugh.  I'm grateful that I truly enjoy being with my daughters.  They've both got a great sense of humor and make me laugh.  Due to visual problems, there was a time when I couldn't use Facebook at all.  I still have limitations, but being able to connect with friends on Facebook, both to communicate, and to share news and other info is definitely a positive.  I have days when Facebook is my only social life beyond my family.  Many of the people I'm connected to are people who I met at some point in my life, and I really am grateful for them.  It's also wonderful to be connected to people I never would have come across without Facebook.    

Dr. Glad always says, and it's so true, that we all have limitations and challenges.  And I need to remind myself of, and focus on what I CAN do, and when I succeed.  It's impossible to feel good about myself if I focus on my limitations, what I can't currently do.  I'll admit that I felt blindsided at first by my invisible disorders, and felt like "aren't I too young for something like this?".  Fifty - how old I was when I got sick - seemed too young.  But I got what I got, it happened when it happened and I try very hard not to compare myself to others.  I try instead, to pay attention, to really notice anything I can count as positive.


NOTE:  For anyone who wants to take a look/listen, here's a link to my YouTube Channel - all recordings done three - four years ago.

https://www.youtube.com/user/cool09VIDeos1

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November 17th 2014 Persistence, finding what works

By | Published Monday, November 17, 2014

"I want to know what's wrong with me."
"I want to feel better."
"I want to have a life again." 
Many people can relate to all three of these statements.  I see these, or variations of them, posted a lot on online vestibular support groups.  There are serious medical problems for which people end up fighting for their lives. Clearly, that's a big deal.  There are also lots of things that can be wrong with you but are manageable and don't really interfere with daily life.  I've had reactive hypoglycemia for over 30 years.  But properly managed, my RH doesn't make me feel bad most of the time.  Being dizzy, a symptom that most vestibular disorders cause, is different.  When I first got sick, it wasn't  just unpleasant, it was really scary.  I also felt really physically  sick.  Thankfully the scary times, the times when I'm dizzy, (which is worse I think than disequilibrium; feeling off balance), are brief and far less frequent now.  Feeling better to me means improving, which I am now doing.  But I know that dizziness keeps people from doing stuff, even very basic stuff.  It can seriously mess up your life. 

When I first got sick, I sometimes heard friends say "don't give up!"  I would now also say "don't give up on yourself."  When you are miserable and scared, it's very hard to keep going, keep trying to get answers.  It can get horribly frustrating, depressing, and just plain exhausting.  I now truly understand the meaning of the word persistence.  Until I got sick three years ago, never in my life had I gone to so many doctors!  And yet I wasn't getting answers.  I had to tell myself "OK, I'll go to this doctor," "I'll do this test," "I'll have this exam," "I'll go through this if it means I'll get some answers." To say that going through all this was difficult is an understatement, but I did it.  Finding the right doctor, to get an accurate diagnosis is so incredibly important. And I think it's what you have to do until you get answers. Sometimes you have to figure out what ISN'T the answer, in order to find out what IS the answer.  Finding out what's wrong doesn't instantly solve problems, but it's SO much better than asking over and over and over again "what's WRONG with me?".  I talk at more length about my journey to my diagnoses in other posts (see for example "Medically Significant"). 

Finding the right treatment, what works for you, is also really important.  In the early months of my illness, I was doing Vestibular Rehab Therapy - VRT - with a Physical Therapist (PT).  I presume that some people improve doing VRT with PTs, but I did not.  I went to my PT regularly.  I wanted the VRT to work.  PTs can do some basic testing, for example for BPPV, but are not, in my opinion, qualified to make more complicated diagnoses.   I did not have all my diagnoses yet, and I think a lot of PTs are very used to doing VRT as a standard therapy for vertigo.  She also kept telling me my BPPV was gone, even though I had a hunch later confirmed by a neurologist, that it wasn't.  Most importantly, I was not seeing any improvement in my life from doing the VRT.  VRT is not the only option available.  I stopped working with the PT when I got connected up with Joyce, an Occupational Therapist whose specialty is Feldenkrais therapy, which is brain re-training.   

My vision therapy is supervised by a developmental optometrist.  A developmental optometrist does eye exams to check for physical eye health, which means they do standard eye exams like dilation, and checking your eye pressure.  They also check that your eyes are functioning properly in a variety of ways.   Both of my daughters have been checked by our developmental optometrist, Dr. Margolis.  If there is a problem, some form of vision therapy is often recommended.  For grownups, like Feldenkrais, this is also a brain re-training issue.  I don't completely understand the complex system of vision, or how the therapy works, and I don't try.  I leave that job to my doctor and therapist.  I do try to answer my daughters' questions when they arise, and sometimes I tell them "I don't know."

Finding the right people to work with is important, but then the work to improve begins.  I wrote about being understood, and this is important not just for family members who live with me, but also those who work with me.  Improving, for me at least, is a work in progress.  I speak regularly with my psychologist, which is very helpful.  I'm always communicating with my therapists, Ann and Joyce.  I need to communicate well, describe things  to each of them.  I think having invisible disorders that affect my life means that people I work with need to have some info about my daily existence, because they are working with me as a whole person, not just my disorders.

Looking back, given how sick I was, I know I did the best I could to get what I needed.  I didn't give up on my search for answers, both for my diagnoses and for treatment with the right skilled, caring professionals.  I hope that no one gives up on their journey to find answers, to get what they need because it's so important.  I remember during a visit with my ENT, Dr. Ziffra, he told me in answer to one of my many questions (note: not verbatim): 

"That's beyond my area of expertise.  The whole balance system is very complicated.  It involves the ears, eyes and a part of the brain.  It's not uncommon for an elderly person to have a problem with balance, so I strongly recommend that you get to the bottom of this now." 

I think it's wonderful when a doctor says "that's beyond my area of expertise," because they are admitting they don't know.  When a doctor says this, I think you can trust them when they tell you what they DO know.  As frustrated as I was, I took his words to heart, and his words were one more little piece that helped me keep going until I got answers.  So now I'm passing these words on... keep searching until you really have the answers you need, and feel like you will be able, little bit by little bit, to improve.


NOTE - It would be great if other people who have had success with treatments other than VRT could share - Thanks....

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November 13th 2014 - Writing, and Understanding

By | Published Thursday, November 13, 2014

Cara asked me recently why I was writing a blog.  I told her about a conversation I'd had with Leena when we came up with the name.  I told her how Leena wrote key words as we talked, and that I plan to keep the note because it's a reminder to me of that brainstorming conversation.  In the end, there are really two main reasons.  I love to write despite the challenges it now presents.  Actually, I need to write, just like I need to have music in my life.  Whether I'm writing about social issues I care about, or music, or an audio book that moves me.   The other reason is that I want to add my voice to those already working to raise awareness and understanding about invisible disorders.  I believe very strongly that each person can make a difference.  I don't ever want to see myself become silent, thinking "why bother, it doesn't matter.  I'm only one person, who's going to listen?"  There's always at least one person who will listen.

Writing is really something that has always been a part of my life, although not in a public way.   I've been writing ever since I was a teenager.  A lot of it was private journaling, which I still do, and I also wrote the occasional short story or poem.  Some students hate writing papers, but that was never me.   I did loads of writing when I was a student, and back then it was, of course, actual writing or typing on paper.  I still remember typing my Masters Degree thesis.  Writing, or rather keyboarding is challenging for me now, though not because I need ideas or inspiration. It takes time for me to write a blog because of how I need to pace myself.  But for the very reasons that writing is challenging for me, it's also good for me.  And I'm fascinated with the power of writing, both for what it does for me to put thoughts, ideas and emotions into words on paper (or computer), and with the ability to reach people. 

Vision problems are fairly common for people with vestibular disorders, since vision is a key element in the whole system of balance.  My vision problems are not particularly common, based on information I've taken in about people with vestibular disorders.  Vision disorder is a very broad term.  Everyone knows what the word vision means, though many don't know how complex the whole visual system is.  My problems, as I've mentioned in other blogs, have nothing to do with eye health.  My eyes are quite healthy.  I don't wear glasses, or walk with a cane, or in any way LOOK as if I have any vision problems.  If you heard me ask Ron to read something to me, or saw me listening to text on the computer through my headphones, you might wonder what was going on.  There are many ways I am challenged throughout the day, despite the fact that I can literally see quite clearly.

My vestibular disorder, Migraine Associated Vertigo, is also sometimes called Vertiginous Migraines.  When people think of migraines, they think of someone in pain, and that part is true.  But migraines, which vary in severity, can also cause vertigo or disequilibrium, which is why I don't like to just say I have a migraine condition.  The term vestibular disorder is broad, because MAV is only one of many vestibular disorders, but more accurate since vestibular (which refers to the inner ear) means my equilibrium is affected.  It's still not a perfect term, since balance is really a whole system, not solely dependent on the inner ear.  But the words vestibular disorder are definitely an improvement.  There are many names of disorders and conditions that are now commonly used and familiar, and I want vestibular disorder to be like that.  There are situations when it's appropriate and necessary to tell someone I have a vestibular disorder, and I don't want it to seem like I'm speaking in a foreign language. 

I believe people are often afraid of being judged or stigmatized if they tell someone their medical problem.  That those with disorders will be treated differently, as if they've somehow BECOME their disorder.  No one IS their disorder, regardless of the problem.   You are still a person with a personality.  Using the phrase "I have health issues" is not, in my opinion, an improvement.  To me, this is a polite phrase that people use, often when they are worried about saying what is really going on, or because they don't think they will be understood. There are so many people living with problems no one can see, and people don't think about that often enough, instead judging others, presuming they know everything they need to know about a situation or person. I feel very strongly that people need to stop and think, realize there often is more to the story than meets the eye, and treat each other with compassion and understanding.   Someone might see me at an event, and not have the slightest idea that anything is wrong.  In fact, I need to get my bearings regarding the size of the room, the number of people, the noise level, the lighting, etc.  I'm fortunate that the congregation I belong to is a wonderful, supportive community.  Even so, no one really understands what it's like for me on a day to day basis living with vestibular and vision disorders.  So my writing gives glimpses or snapshots of my experiences. Those snapshots are important windows into my life, as I live with invisible disorders. 

Sharing my experiences can be difficult, or make me uncomfortable, but that's not a bad thing.  Sharing my writing makes my medical challenges more real to me because I look at and think about my situation in a different way. This process, and helping others with invisible disorders, is all good.  I don't personally believe that my vision or vestibular disorders happened for a reason, or were meant to be.  I DO believe that learning and growing from whatever I have to deal with is really important, and a much better expenditure of my energy than anger or self-pity. To say that what I've been going through, and working with hasn't changed me, had an impact on me and my life would be ridiculous.  Of course it has, some good and some bad.  But it's still NOT who I am, not my identity. 














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November 5th 2014 - Welcome!

By | Published Wednesday, November 5, 2014

Welcome to my blog! Please take a look at "About Me"....a new blog post coming soon....

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Sept 8th 2014 - Meet Maisy

By | Published Tuesday, November 4, 2014

Meet Maisy
She's healthy enough now that I'm ready to introduce the newest member of the Schwartz household - our kitty Maisy.  We adopted her over the summer from Orphans of the Storm - or more accurately she adopted us.  Leena and Ron were in the cat room, Maisy found Leena, Leena picked her up and Maisy stayed contentedly in Leena's arms.  Cara and I were not in the cat room, so I spoke to Ron by phone, who told me about Leena and the as yet unnamed kitty in Leena's arms.
We requested some private time with Maisy, who was curious and very sweet, rubbing against us and walking from one lap to another.  She's petite - full weight will probably be about nine pounds - and the girls and I call her our tiger baby because she is golden brown, black, with a bit of grayish white (not a traditional calico look), and has black stripes on her long front legs.   She looks as unique as her personality.
She was VERY thin when we got her - at her lowest weight when she was sick with a respiratory infection, she was 4 1/2 pounds.  At her worst when she had no interest in eating or drinking, Leena and I spent 1 1/2 days hydrating her with a dropper.  But with lots of TLC, our wonderful vet Dr. Key of Rivertrails, and the right meds, she is now a healthy little girl - about 1 1/2 years old - who is building muscle and loves to play!  She chases her tail, is forever hunting imaginary enemies and loves to chase a ball.  Cosmo (our dog) was very good about welcoming his new little sister, and would be thrilled if she played with him...we'll see.   Maisy is now an adorable, quirky member of our family.

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June 5th 2014 - Care During Life and Illness

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Thoughts on care during life and illness - because of a cat.

It's been 24 hours since I said goodbye to Goldy - I keep thinking I should check on him  and then remember.  The thing is that for the last four months - really the last 14 years - he was a living thing I took care of.  When he got sick I was determined not to have to look back as I've done with my childhood cat Poppy and say "it could have been so different." 
My childhood cat Poppyseed died when I was ten, and I had always promised myself - though it ended up taking 30 years - that I'd get another cat.  There will be another one later this summer, but not a replacement.  Living beings you love don't get replaced.
I gave Goldy a steroid wrapped into a pill pocket twice a day, and an anti nausea pill.  We developed new routines, and then there was the tuna fish.  Every time there was a change in his behavior, I thought about what to do. 
Leena commented that she knew the difference between the jingle of his tags and our dogs'.  I knew exactly what she meant, and find myself listening for the jingle, and it's strange to only hear one.  He was a part of our household - the girls don't remember our house - until now - without a cat because they were little when we got him.
I thought a lot about life and death while Goldy was sick. And about the ending of a life.  Goldy hung on much longer than we thought he would, and in the end I knew that if we'd waited until he didn't seem like Goldy anymore - his personality gone - we'd have waited too long.  The ending was painful to see - but I knew when we couldn't give him his pain med or anti nausea med anymore, combined with not eating and or the use of his back legs, it was time.  I knew four months ago that he was terminally ill, but final goodbyes are never easy.
The vet was wonderful - we were instantly ushered into a private room, and our vet gave us time in private as well as waiting discreetly in the room.   We waited after she gave him the sedative, and then when she checked and his head was sleepy on the table it was time.  Time to really say goodbye.  I didn't want to see him no longer breathing.  I didn't want to remember him that way.
I think that in the end euthanasia is a peaceful, humane way to let go of what you love.  I think humans shouldn't be so afraid of when our loved ones get sick. I've thought a lot about what the ending will eventually be like when my father - who's lived with lymphatic leukemia for nearly 20 years - dies.  And I also think that sometimes ending the life of a human, rather than waiting for the person's body to finally give up the fight for survival, would be the kinder more loving thing to do.

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Bloglovin!

By | Published Monday, November 3, 2014

Follow my blog with Bloglovin

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October 27th 2014 - On the Topic of School Shootings

By | Published Saturday, November 1, 2014

When I saw the headline "Breaking News: School Shooting," I thought "oh no, not again, not another one." I haven't seen any stories explaining how the student was in possession of a gun, or how he was able to bring it to school. I find myself wondering how difficult, or not, it really is for a student anywhere to bring a gun to school. That worries me. I'm also troubled by the thought that I don't think this will be the last shooting. I wish I didn't feel that way, but I do.
I can hear people saying but what about "the right to bear arms," but I feel like that comes from a very different world. As Leena mentioned her Junior year of high school, when it was discussed in her Social Studies class, the weaponry available now is pretty astounding. Even if that wasn't the issue with this particular tragedy, guns in the hands of anyone who isn't trained to use a gun (I'm thinking, for example, of the military and police officers) scares me. And I'm not getting into the issue of the accidents that happen, because this wasn't an accident. School shootings are never accidents. I told Ron I was more concerned about guns in school than Ebola, which I think we have a miniscule chance of contracting. So what I wonder in the end is what will it take, how many kids will die before there are changes?
I want to make it clear - whatever pushed the student to do what he did, including then killing himself is horrible. Everyone says people kill people, not guns...but horribly troubled people get access to guns...

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October 24th 2014 - Getting a Haircut

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I've written about going to special events, but I decided to share today about something we all do - get our hair cut. This is one of those ordinary events that now presents some challenges. I've been going to the same place, The Right Bank Hair Salon, for many years, though the location has changed due to development in the downtown of Deerfield. I've had my hair cut by the same person, Larry, also for many years. I'm pretty sure he's still one of the owners. He's a really good guy. The Right Bank is very low key, and not crazy expensive like some places. It's not a huge place, which is nice. They now share space with a nail business (All Polished Up), which I was initially concerned about, but it hasn't been a problem for me.
The first issue I noticed was that they have ceiling fans. I cannot deal with the motion of fans, and Larry accommodates me and turns them off while I'm there. I used to ask him to turn off the music, but I no longer do that. I try not to ask for accommodations unless I really need to - sometimes this gets complicated, but that's an issue for another blog. I'm improved enough now to handle some music in the background. His station is not, thankfully, right next to the source of the music. I also make sure to go in the morning since mornings are better for me, and to pick mornings that are not super busy. A lot of people means more activity and more conversations in the background, so low traffic mornings are good.
Fortunately for me, his station is not by the window, so I don't see any car movement in my peripheral vision. So I've never had to have a conversation about that. I have once or twice had to have someone else cut my hair if he was unexpectedly gone, and had to deal with the window. That's how I figured out that no window is better. The first thing Larry does is lock his chair. I don't want to have to worry about unexpected movement, or spinning (even slowly) and this just means he has to walk around me. I also never get a shampoo there. I've never liked that, and I especially don't want to deal with tipping my head back, etc. now. I sometimes find myself watching him doing the actual cutting, but I try to look at other things. Focusing my eyes on the actual cutting isn't something I want to put my visual energy towards. I trust Larry, and he always has me run a comb through my hair, check how it feels, and asks if the bangs are a good length. Sometimes he'll have me stand up and stand behind the chair. Whenever he asks me to move my head, he'll say something like "as much as you can," which I really appreciate. He doesn't completely understand my situation, but he understands I have a problem, and doesn't want my haircut to be stressful.
When it comes time to pay, I stand behind the counter, near where he sits. I've always done this and it just feels better. I give him a signed check which he completes, and then he shows me what he's written. Most of the time Ron transports me, so he's usually waiting in a chair for me, or about to pick me up. Occasionally I take a taxi. I'm grateful for the Deerfield Village coupons I'm eligible for, because it makes taking a taxi for local stuff very inexpensive. The fact that Larry is a caring person, and genuinely doesn't seem to mind making a few accommodations without a fuss is wonderful. Getting my hair cut has gotten a little bit easier, partly because I handle it better, and partly because I've learned what elements are difficult and how to deal with them. I think that's a pretty good rule of thumb for me in general, because I don't think a haircut, beyond the fact that it's an outing, needs to be a major challenge. I want to feel less shaggy, and a bit more put together, when I leave.

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October 21st 2014 - Thoughts after The Invisible Bridge

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I listened to The Invisible Bridge...all 30 hours of it....it's not a book to hurry through. I'm kind of glad I listened to it, rather than reading it, because the audio made the story come to life a bit more. It's a dense book, full of emotive lengthy descriptions, but in the end I think that's what gives it texture, brings it to life. It's fiction but based on the author Julie Orringer's family story - those who survived - WWII. She did a great deal of careful research, and the book was seven years in the making.
I've read other books about the Holocaust. But this one, which mainly takes place in Hungary, covers the entire historical span, from the lead up all the way to the end, and then years later to a teenage granddaughter in the states who wants to know the full story of her past. I suspect telling this story was difficult but important to do for Orringer. Some of the story is fiction, but it's very reality based, and I found once the war started, it was really compelling. I got a very real sense of how the people were trying to grasp, and not believing what was happening, as history was unfolding around them. Life in the Hungarian Labor Camps in all its' horrors. But the descriptions are not just of places and events, but emotional reactions. There's one scene in which a man is going to commit suicide, but chooses not to, because then the Nazis would have killed his whole family. The brutality shown one young man who was Jewish AND homosexual. There's a sense of disbelief in the beginning, followed by not believing that life can move on. A tremendous fragility, utter unpredictability.
There is more than one scene describing the intense, complete and necessary focus on survival. The need to shut out everything except how to survive. I am truly in awe of those who managed to survive. I found myself very moved not just by the utter lack of compassion and humanity to those who are different (in this case because of their religion), but also the occasional acts of tremendous humanity, the ones who tried truly bravely to stand up to what they understood to be horribly wrong. I couldn't help thinking, when I had finished the book, that decades later we can still be so lacking in tolerance and understanding, so wary of differences. I think differences make us uncomfortable, and so we shy away. Why not be open minded, and get to know others as long as those differences won't do us personal harm? We are all - regardless of religion, race, sexual orientation, etc. - human beings in the end.

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October 19th 2014 - Medically Significant

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My least favorite medical term I've heard over the last few years is "medically significant." This term, and what is functional played a part in the journey I took to get to my diagnoses. My experience of how some doctors handle patients with difficult to diagnose problems also played a part. 

 Medically significant is a term doctors like to use, at least some of the ones I've seen. As I understand it, it means that you have a problem that warrants medical attention. But sometimes tests or exams don't reveal a need for some sort of fix that the doctor can provide. Sometimes the problem is what I, and my therapists, would call functional. In my experience, doctors need to be better about recognizing when a patient has a problem that needs help that they cannot provide. Or that a patient needs more testing to figure out what's wrong. Technically, I don't have medically significant problems with my eyes. There's nothing wrong. This fact still astounds me - it's just absurd! But it's true, according to various measurements that a doctor can achieve by performing tests on my eyes. 

 Correctly diagnosing a problem can be very difficult, and this is definitely the case with vestibular disorders. So what was my route to my combo diagnosis? It started with a neurologist. He did correctly diagnose BPPV. The problem was that when my MRI a month later was normal, he didn't say "OK, clearly you're not OK. So now what do we do?" I wasn't in a position at that point, and hadn't learned nearly enough, to advocate for myself. So I went from doctor to doctor, being told over and over "BPPV." Finally, I went to an ear specialist - I only saw him once - who said that I might have what he called vertiginous migraines. I wasn't sure what he meant, but I do remember having this light bulb "a hah!" feeling. He said he didn't feel qualified to make a diagnosis, so he referred me (yes, finally a referral!) to a dizziness specialist. 

 I ended up at the Chicago Dizziness Clinic in July, ten months after first getting sick. I had had some tests during the winter, but not a complete battery, so I had to do some more. The neurologist explained that beyond symptoms, there was no test for MAV (what the ear doctor had called vertiginous migraines), which is what he thought was the problem in addition to BPPV. He said he had to rule out a bunch of other stuff in order to confirm the diagnosis. So the good news was that I did end up with the diagnosis of MAV, but the bad news was a) not being told anything about a migraine diet, and c) not being told there might still be something else going on, in my case with my vision. I had the distinct feeling my eyes were over reacting during some of the tests. I figured out about the migraine diet on my own with help from various sources, including VEDA. I also figured out by the winter time - now a year and a half AFTER initially getting sick, and having started therapy with Joyce the previous May - that I definitely had something going on with vision. Something that was beyond diet, or help from Joyce. It's also worth noting that I did NOT get to Joyce because of a doctor, but rather on the recommendation of a friend.

 I think one reason doctors don't always make referrals is because they, in my experience, don't want to admit when they don't know something. It's true that I want doctors I see to have answers I don't. I don't expect non-medical people I interact with to understand my situation, but I do have an expectation that doctors will be informed about the basics. It's strange to be in the position of needing to inform THEM. I've found therapists tend to be better about this. Certainly Joyce fits in this category. When I first saw her I said I wondered if there was something going on with my eyes, but then we moved into concentrating on what she could do for me. By the winter - about eight or nine months after I'd started with her - I brought up my vision again. By then she thought I had progressed enough to check this out, and I ended up in Dr. Margolis' office. 

 I went through a variety of tests, and then had a consultation with Dr. Margolis. I finally had found someone who understood what I was experiencing. I no longer felt like I was going nuts. Going through the tests was difficult, but getting a diagnosis, and being told he could help me was worth it. I still feel like my vision problems are a bit strange, but when I'm there, even though the therapy is difficult, I also feel understood. I now know that I must have had Convergence Insufficiency (CI) as a child. There is a genetic component and both daughters have it - Leena needed therapy. I don't know back in the 60's if there was any kind of vision therapy. I've never done the research to find out. I know that vision is very complex, and my problems are really more than the CI. I'm very fortunate that I ended up with Joyce and that she sent me to Dr. Margolis, who has skilled therapists who are also wonderful people. My vision problem is not, technically, a vestibular disorder since that refers to problems in the inner ear. But vision is an integral part of balance. I've been told that I rely too heavily on my vision because of my balance problems, and this in turn is a problem since I have a vision disorder.

 I don't know if my situation would have been different if I hadn't had such a circuitous route to the final piece of my diagnosis, or if I'd found out about my migraine condition earlier in the process. I'll never know. I do know that doctors need to be willing to help patients regarding conditions that may not be "medically significant" but ARE what I call functionally significant. Being functional in the good sense of the word matters a lot. Bodies are amazing, complicated systems and doctors can't know everything so they need to be open to sending patients elsewhere. Even in the best of circumstances, pinning down a diagnosis can be difficult, and once diagnosed the problem may be difficult to deal with. Knowing what's wrong can give some peace of mind. I know when I do something and I feel bad, knowing WHY I don't feel good takes away some of the anxiety. I can figure out ways to cope, and utilize my support system. I couldn't do that when I didn't know what was wrong.

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