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...

September 17th 2015 A good doctor visit; doctors and patients can work together

NOTE: Please use Google Translate to copy and paste to listen if needed.

I've written about negative medical experiences, so I wanted to share a positive experience I had.  I found a really good dermatologist - Dr. Johnson - and was really pleased both with my new patient consultation for a routine skin check, and a follow-up to have small moles removed. 

Dr. J. shook my hand firmly, and we spoke briefly during the skin check, and I told her that I had a balance problem.  She didn't ask a lot of questions, but made sure that I was as comfortable as possible while examining me.  She was extremely diligent in her examination, and said that just to be on the safe side - since my mother has a history of skin cancer - she wanted to remove a couple of small moles (they turned out to be normal).  She explained what would happen, said there was no rush, and that was it.

I decided rather than waiting, I would go ahead and get them removed, so I scheduled an appointment.  When Dr. J. came into the room on the appointed day, after shaking my hand, she remembered that I had mentioned a balance problem.  We talked about what position - lying down in some way or sitting up - would work best for me.  In a situation that has some inherent stress involved - I knew it was a minor procedure but still not what I'd call enjoyable - I didn't want to challenge myself. 

I said I would prefer not to lie down, and she told me where to sit, and which wall to face so that she'd still have good lighting.  Obviously, I still wanted her to be able to do her job well.  I asked for a stool because I knew that having my legs/feet dangling would make me feel ungrounded, which I don't like.  She asked her assistant to bring in a stool, which was placed under my feet.  I also asked her to shut the vertical blinds.  I knew that looking at the blinds would bother me; they move, and in this case, I could see traffic and people through the window.  I didn't want to challenge myself visually, and she immediately closed the blinds.

Dr. J. thought to ask me if I wanted the part of the examination bed where a person's head goes to be raised up, so that one end of the bed was at ang angle.  I thought about it, and said yes, that it might be helpful.  I didn't lean my whole body against it, but resting my arm on it at times felt good - it meant I could change positions a bit, and having part of the bed higher made me feel more grounded. 

Dr. J. asked me if I wanted to know what she was going to do before she did it, and I said I did.  She did, in fact, do a really good job of telling me what would happen, and this made it easier on me because there were no major surprises.

The whole procedure took less time than I was expecting, which was nice, and then Dr. J. and her assistant did a good job of explaining the after care.  I repeated much of what they said to make sure I understood, and they patiently answered my questions.  They also gave me the instructions in written form, but having the verbal explanation was much easier for me.

I left the office relieved that for once, a medical visit had actually been very manageable, thanks in large part to a doctor who took some extra time.  It wasn't really a huge amount of time - though I know doctors are on the clock these days - but it was enough to make a difference for me.  Dr. J. was considerate and compassionate, but still managed to be efficient and skillful, and for that I was grateful.

Vestibular disorders - www.vestibular.org
Functional vision disorders - www.covd.org (College of Vision Development)


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September 16th 2015 What 3 things do people need to know?

NOTE: Please copy and paste into Google Translate to listen if needed.

It has been officially recognized that this is Balance Awareness Week - so here are three important points.

Don't judge based on your own experience -

I recently heard a story in the news about someone diminishing someone else's experience with vertigo because their OWN experience was fairly mild.  So one of the three things I'd want someone to know is that there is a wide range of severity for vertigo and dizziness, and disequilibrium - if yours wasn't disabling, someone else's still can be.... don't base others' experiences solely on your own.

Don't presume that you know what it's like -

Unless you are SURE you "get" what someone is going through - and this applies to so many invisible disorders - don't presume that you do.  Though it's difficult not to be understood, it's more difficult when people think they get it, but they really don't.  Telling someone that you're sorry it's hard for them is always a good response, rather than that you understand, and then just listen to them. 

Many disorders really are invisible -

Finally, just because someone looks OK, doesn't mean that nothing is wrong.  Even when someone is having a bad day, many are good at putting on a good face - how many times have people said that Robin Williams always had a smile on his face?  My eyes do not look strange - neither my Convergence Insufficiency, nor my impaired VOR are visible to someone with whom I'm speaking. 

vestibular disorders - www.vestibular.org
functional vision disorders - www.covd.org



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September 15th 2015 Technology, and the power of the internet

NOTE: please use Google Translate to copy and paste to listen if needed.

I saw a quote once to the effect that technology makes life easier for many, but for those with disabilities, it makes things possible.  This is so true.  During Balance Awareness Week, I find myself thinking of the many, many invisible challenges people face - technology is about much more than electronic wheelchairs.

I can use my computer thanks to Dragon Naturally Speaking which allows me to control my mouse with my voice, and compose with my voice if I'm not up to using my hands.  I can listen to text by copying and pasting it into Google Translate and then clicking on the microphone icon.  I use this SO much - not just for news items, but for e-mail as well.  I use Illinois Talking Books (offered in other states as well) and Choice Magazine Listening to listen to all kinds of audio material.  I use my public library as well.  All of this is due to technology.

A lot of people diss over-use of smartphones, and talk about people being so plugged in that they miss live personal interactions.  There's no question that social media has its' downside.  Like a lot of things, it can be, and is misused by people.  People use social media - whether it be Twitter, Facebook, etc. - to post mean, horrible things both about others, and so that the victim sees it directly.  I don't for a minute condone ANY of that.  But that doesn't take away from the good, sometimes even wonderful things that can come of social media as well. 

I'm all for people getting out and having face-to-face interactions, but some people with invisible disorders are limited in terms of what they can do, and where they can go.  I think it's a bit more challenging to build friendships via private messaging; to have the same kind of depth as in person, but over time relationships can be built.  And of course, there can be the occasional phone call.  Friendships tend to go through changes anyway, as people go through changes. The obvious plus to connecting to people online is exactly that - connecting to people.  Whether it's rebuilding ties from childhood or teenagehood, or discovering new friends, either way it's good. 

Easy access to info can be really helpful, as long as you get it from a reliable source.  I heard of a wonderful book about Depression called Reasons to Stay Alive by Matt Haig (available through Amazon).  I heard of another book called The Brains Way of Healing by Norman Doidge.  And I've learned so much about my disorders from good info that people share online. These are only a few examples.... there's tons of good info (NOT just bad info) that reaches people quickly and easily.  I'm able to keep up to some degree on world news since I don't read newspapers or magazines.  And of course, I'm able to share my story through my blog site, and through the wonderful organization VEDA.  That's pretty powerful, and ALL positive!



Vestibular Disorders Assoc. - www.vestibular.org
College of Vision Development - www.covd.org

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