Fifteen years ago, I was diagnosed with a condition that has lead to a visual impairment called Iow vision. I’s been quite a journey of learning, coping and adapting. I’s not the end of the world, and there are many tips and tricks to help. You just got to know about them! Hopefully my story will help someone out there! If this is your first visit, you may want to start with the first 5 or 6 posts. Enjoy!

Wednesday, January 18, 2012

Back to Hopkins and the Wilmer Eye Institute...

The Wilmer Eye Institute at the Johns Hopkins Hospital is perhaps the most renowned eye hospital in the world. Wilmer has the best doctors and it does the most research.  If you have an eye problem, Wilmer is the place to be. People who know Johns Hopkins are familiar with the iconic Dome on the original building, and the huge statue of Jesus inside.  It’s the centerpiece of Hopkins, which today is an enormous conglomeration of buildings that takes up maybe 15 city blocks.  

This is a map of the Hopkins Campus in Baltimore. The upper circled area
is the Wilmer Eye Institute. The new building to the left house the Wilmer
operating rooms and research areas.
The entrance to the Eye Institute is just past the statue. It sort of sets the stage.  Going into Wilmer, you have the feeling of going into an old-fashioned bank with very high ceilings. Patients line up in a queue in a roped area and wait for a registrar. There is even a sign there that says (in large type) “Please wait for the next available registrar.” There are nine registration stations and people move through them quickly as the registrars shout “next.”

The registration area.
I visited Wilmer about a week ago for the first time in years. I remember my many visits to their retina clinic and at first blush, this visit wasn’t much different. So many patients. The registrar said they see more than 400 patients a day! Even though they now have a newer and bigger building for research and surgery, I went to same old place and registration was the same. On the high walls, there are pictures of doctors caring for patients in the 30’s, 40’s and 50’s. Johns Hopkins is practically the birthplace of modern medicine, and everywhere you look there is a strong feeling of historical significance, almost reverence.  When you are there, you know that you are not in any ordinary clinic. In the Wilmer “Dome”, there is even Dr. Wilmer’s examining chair where he examined the eyes and prescribed eyeglasses for eight consecutive US presidents, from Grover Cleveland through FDR.

My experience last summer with the State of Maryland’s Department of Rehab Services was very positive, but there was/is no continuity to that service. And, unlike so many of their clients, I have the means to pay for my own eye rehab. I wanted to develop a relationship with a doctor who understands my disease and who can prescribe glasses. The retinologist who I see twice a year doesn’t do glasses, and neither does the low-vision doctor I saw earlier.  I also figured that if they ever discover a cure for what I have, Wilmer would probably be where they discover it.  So, I made an appointment, and had copies my records sent to the Dome. Still, I was a little leery, because if you remember from earlier blog entries, my previous care at Hopkins, though medically very good, was not very helpful.

I registered and made my way to the elevators to go the third floor. As I turned the corner, I noticed a glass case that was full of low-vision gadgets and gizmos with a sign that said “Low-Vision Rehabilitation.” Hmmm. This was different.  I stopped and looked. I didn’t remember this from 15 years ago or even 10 years ago. I went up the elevator and then followed the (large print) signs for low vision, and came to another registration desk. After all, this is Hopkins! I checked in again, and was then ushered into a waiting room where there was only one other person. This, too, was different. The places I’ve visited in the past were always crowded. After a 10-minute wait (another big difference), a guy named Jim came out and called my name. He was a low vision specialist, and we started right in. 

Jim checked my close-up vision and asked what kind of devices I was using. I pulled out a variety of magnifiers – standing, portable, loupes, clip-ons, etc., etc. We went through them one by one, and immediately he taught me something I didn’t know. I’m not sure I can explain it, but when I use magnification, it effectively enlarges the area around the blind spots, and that’s what allows me to see more – it’s not so much making what I’m looking at bigger, but instead enlarging the field of vision. Jim said he would guess that after using a magnifier for a while, my eyes get tired, and he was absolutely right.

Jim said that because of the disease I have, my eyes work overtime and it’s not surprising that at the end of a day, I feel like putting ice cubes on them.  I can help the eyestrain by holding things very close up to my eyes, but if I do that for long enough it will cause shoulder, neck and back pain. Jim said the goal was to find the just-right combination of magnification and lighting that will get the best use out of the vision I have left, with the least amount of fatigue.

We played with the light using my clip-ons and other gizmos.  I knitted with and without light, with magnification on my distance bifocal and with magnification on my close-up bifocal.  I am learning soooooo much.

I asked Jim how long this service had been at Hopkins and he said years. This included 10 – 15 years ago when I was a patient. No one referred me or even told me about it, I said.  Jim wasn’t surprised, but he added that retina doctors are getting better about referrals. Maybe I’m not the only one doing consciousness-raising.

Do you ever wonder how silly we look when we get our eyes
After an hour or so, I moved into the doctor’s office. I don’t know if this doctor is famous, but she is certainly well-respected. She’s an optometrist and not an ophthalmologist. This is ok. I want someone who can give me the best possible glasses and help me see the best I can. She checked my peripheral vision, contrast, everything. I looked as hard as I could to read every letter and line and I moved my head all around to see around the blind spots. She was patient and let me take my time so we could get a good evaluation. I think it’s an F, I’d say, but it may be an E.  She had all the notes from the Hopkins retinologists of years past, and from my new one, and had read all of them. I learned that I have “eccentric viewing”  in my right (bad) eye. That means that a person looks slightly away from a subject in order to view it peripherally with another area of the visual field.  The internet says I’m using my rod cells instead of my cones. In my better eye, I tilt my head to the left in order to view something straight on. I never noticed.

Anyway, the doc was great.  I brought up my worst fear and asked her if I was “legal” to drive in Maryland. The thought of giving up driving is scary. How will I get where I want to go? Who will take me? I will become such an imposition if I ask my hubby and friends all the time to pulleeeezzze take me to the bead store, the yarn store, the nail place, etc. Yikes! I’m not ready for helpless!

After a half hour and some definite anxiety on my part, she said yes, I was legal to drive. She was comfortable that because I had already made decisions about driving at night, in bad weather, heavy traffic, etc., and that because I had asked the question, that I would know when it was time to stop. Like all the other doctors, she also assured me that I probably will not go blind.  Just be careful, she said. (My husband says I’m actually a better driver now, because I know I have to pay constant attention. Amazing what fear can do.)

We talked about the impact of my low vision on my being and how just working all day to see makes me tired. She understood, and made me feel like, yeah, it’s ok to just sit still and close my eyes now and then.

She gave me a new prescription for glasses and we scheduled a follow-up appointment. I’ll go back in about 6 weeks, after I receive my new glasses. Next time, she wants me to bring my bead work. We’ll also look into a bioptic telescope to put on the lens for my better eye, which might help me see street signs.

And so, I’m back in the Hopkins system for my low-vision rehab and corrective lenses.  And this time, I feel good about it.

Part of the history of Wilmer includes Dr. Wilmer's “Examining Chair.”
Dr. Wimer examined the eyes of eight sitting U.S. Presidents. In
2001, they took the chair off the shelf so President Bush could
sit in it too!

Wednesday, January 11, 2012

What was I thinking?

What was I thinking?  

Overexposed picture that shows the pattern.
A couple of weeks ago, a friend told me about a brand new knitting shop not far from our house. Since I enjoy knitting almost as much as beading, I had to check it out. It was delightful! They had samples hanging on every wall, and I wanted to make them all. The next day I attended a lecture by a man named Ron, who was describing a kind of wool called Buffalo Gold. The yarn, he said, was the second warmest wool available. It doesn’t pearl up or shrink, and if you get it wet, it will still keep you warm. He went on to talk about the American Bison and how the wool is produced, etc. etc. Meanwhile, he had this wonderful pair of fingerless mittens. I put them on and they felt soooo good and they were soooo pretty. I wanted to make them right away.

Ron didn’t have many colors of yarn and so I picked a hunter green. I checked my gauge by knitting a 2-inch square, bought some double-pointed size 3 needles, took my yard and pattern and I was on my way.

A day later, I sat back, totally frustrated. What was I thinking??????? The yarn is beautiful, but it has a little fuzz on it and if you aren’t careful it will split. Hunter green is a great winter color but it’s dark and hard for me to see. Size three needles make a tightknit fabric but the stitches are teeny tiny! And the gloves, gorgeous as they were, have a right twist with every K2 in stockinette and then an alternating left and right cross cable every 5 rows (for the non-knitters out there, what this means is,it's a fairly complicated weave).

One is almost complete!
It was slow going. I would knit a stitch and rip out a stitch. I completed a row and pulled out a row.  Pretty soon I got out the light and the optics. The little clip-on spectacles that I hated six months ago are now my best friends. They clip right over my glasses and have a couple different positions. When I position them in front of the distance part of my bifocals, I can hold the knitting farther away from me. When I get into trouble or have a difficult row (those cable stitches), I move them in front of the lower part of my bifocals and move the knitted fabric closer to me. Focusing farther away is easier on the eyes, but harder on the back; focusing closer is easier on the back, harder on the eyes.  I’m learning that using these relatively inexpensive clip-ons (A whole set from Amazon costs about 20 bucks) gives me flexibility. 

My work space for the bead class! See the
loupes and the clip-ons. The charlottes are
those teeny tiny beads in the front on the left.
In the middle of my knitting project, the Baltimore Bead Society sponsored a bead show with a class by one of my favorite instructors. I haven’t worked with little beads for over a year -- Just too frustrating.  Well, I thought I'd give it a try and signed up for Amy’s 6-hour class. Again, what was I thinking? Size 15’s and charlottes!  I packed up my special needles, Ott Light, clip-ons and my special, special eyeglasses with the telescopic loupes that look like what the dentist wears. Off I went awaiting what the day would bring.

I started slow, but within an hour had caught up with the class. I used to be the “fastest” beader in all the classes. It no longers matters. I was enjoying the new relationship I had with the beads.  The meditative and therapeutic quality of the beads was back and I had achieved bead-nirvana once again.

What I had learned is that yes, I can still do what I want. I may be slower and the results may not be perfect, but I can still do my knitting and beadwork.