Photo of a raging physician

Today is my eight-year “anniversary” of my Retinitis Pigmentosa diagnosis.

“I am discussing confidential patient files in there and it is NOT okay for you to barge in. You don’t come through a door you didn’t come through!”

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Photo simulation of eyesight by Molly Watt. Photo

Living in a tunnel with Usher Syndrome by MollyWatt

MollyWatt is a #Deafblind lady who lives in the UK and this is one of the BEST simulations of what it is like to see life through a tunnel. Tunnel vision is also one of the hallmarks of Retinitis Pigmentosa (like I have). BUT, Usher syndrome also causes deafness, making life even more chellenging.

Molly Watt is one of the first people I found after I was diagnosed with RP. She probably doesn’t have any idea how much her videos, blog, social media posts, etc. have helped to educate me as well as COPE with my new diagnosis.
#blind #lowvision #ushersyndrome #advocacy #inclusion #accessibility #sensoryimpairment #blogging #disability

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Clip Art Falling downstairs

Forever Falling

I have a long history of falling. I’m not talking about anything romantic like falling in love (I already did that: happily married 30+ years). I’m talking about actually physically falling. I’ve fallen everywhere you can imagine; I’ve even fallen UP the stairs! By 2012, the falls had become a real problem, causing more and more damage and occurring at an increased frequency. The falls were one reason I went to places like Stanford and Mayo for evaluations. It wasn’t until I was diagnosed with RP in 2012 that the falls finally made sense. It was actually a silver lining to the diagnosis for me. I reasoned that after I got some Orientation and Mobility training, improved my knowledge of things around me, etc., that the falls would STOP.

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photo of blind student with white cane being shown orientation and mobility.

Ask Don’t Grab

I had a disturbing encounter today. My caregiver dropped me at the hospital curb for Physical therapy and as I was walking through an automatic door I’ve walked through a million times, I felt someone gently grabbing my arms from behind at the same time I heard a male voice saying “you’re okay….just go a little to the left”. It really startled me and I tried to see where the voice was coming from, but the man was totally out of my field of vision. I guess to him, it looked like I was going to walk into the wall, but I wasn’t. I was mostly just trying to get through the large automated sliding door without hitting anyone with my cane. The man continued to hold onto my arms and “helped” me until I got to the elevator. It was very odd as I know he meant well, but grabbing me from slightly behind me scared the beggeezes out of me as it made me realize how vulnerable I am. It also strikes me how little people understand about the degrees of visual impairment and how much work we must do in order to educate the general public on how to interact with people with visual impairments. But how do we communicate this?

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Photo of a raging physician

When your doctor is scarier than learning you are going blind.

Excerpts from visits with Dr. Schwartz :
*12-17-12:” I don’t know if you’ll remain sighted”.

*2-21-13:
“In my professional opinion, you will probably never be totally blind”.

*Dr. Schwartz screamed at my mom: “Ma’am, when you ask me a question and I expect you to pay attention to me while I answer it. You come here, you berate my staff and now you’re ignoring me when I talk!”

“”Your vision was a little worse than the previous visit.”

*”You are probably at the end of a phase of fast progression and will enter the last phase and your vision will stay the same.”

*“DOCTOR TO NURSE!!! “Your crying is DISPROPORTIONATE to your condition!”

–Steven Daniel Schwartz, MD

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cartoon of a raging bull

Jules Stein Eye Institute Continues to allow the Retina Division Chief to Verbally Assaults Patients Going Blind.

“I am discussing confidential patient files in there and it is NOT okay for you to barge in. You don’t come through a door you didn’t come through!”

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stock photo of woman lying on a gurney having an ERG test to diagnose retinitis pigmentosa.

UCLA Jules Stein: ERG (day two) and CT

I had my umpteenth visual field test and as usual, feel like I didn’t do so hot but at least it
is not as grueling as the ERG. McGee’s doctor scheduled her to return 12/20 and
once again, I won’t be there for my daughter as I will be in the hospital after
my left shoulder replacement.

Day 2 of the ERG was not as grueling;
there was no light adaptation
required so that helped. Sara, the tech, is awesome
and makes it much less scary. I was able to listen to my audiobook so that helped tremendously to make the time go by faster.

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UCLA Jules Stein: ERG Testing Day One

TBGirl BLOG POST TITLE: UCLA Jules Stein: My First Visit DATE WRITTEN: 11-26-2012 DATE POSTED: DATE BACK POSTED: 11-26-2012 NOTES/COMMENTS:…

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photo of the back of any eye to show retina

UCLA Jules Stein: 1st Visit with Dr. Jekyll

Appt at 930 – saw an ophthalmology technician. She did the basic tests – cover the right eye then the…

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Photo depicting visual field.

I Woke Up with Lupus and Went to Bed Visually Impaired.

The neurologist is testing me for Myasthenia Gravis but is 95% sure I don’t have it. He also ordered a cervical spine CT to see if my issues are caused by compressed spine. The really scary part is that I  failed the part of the neuro exam that looks at visual field. He had me cover my left eye and my right side was unable to see anything beyond a tunnel. It’s like looking at the world through a tunnel (hence why they call it tunnel vision). It explains the car accidents, the falling and bumping into people and things.

I was sent immediately for an ophthalmology exam. Ophthalmology is at another campus so we had to get a cab to get there. I saw a Fellow; Dr. A. and she said my intraocular pressure was good; indicating I don’t have glaucoma. That’s the good news; the bad news is, she has no idea what it is. She scheduled me for a visual field test tomorrow and to consult with her attending, Dr. S.

Today was emotional to say the least; my epiphany in the neuro exam was more like an emotional breakdown. All I keep thinking is “I’m screwed”. My mom keeps telling me not to worry until I have to but I can’t help how I feel. I’m petrified.

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