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Looking in the Windows.

Following through on these eye doctor appointments at Joslin’s eye clinic usually means carving out 5+ hours in the day.

Even though Rhode Island is assumed to have a short commute to Boston proper, with traffic it can take two hours to get into the city.  Which means that for a 1.30 pm appointment, we had to leave the house at 11 am to ensure that we arrived 15 minutes before the appointment time, then the hour and a half appointment (including dilation and exam … and waiting), and then the two hour ride home.

I could find an eye specialist closer to my home in RI, but I believe in the care team at Joslin.  They’ve been caring for me for almost 30 years, and when I was diagnosed with macular edema last year, it was caught so early that no one panicked, but everyone was ready.  They were ready to do all the close monitoring required to track this eye disease, and they were also prepared for any medical or surgical intervention, should things progress to that point.

I trust them.  My complications are “common” to them, in that they see long-established people with type 1 diabetes all the time, and they treat macular edema all the time.  My eyeballs are run-of-the-mill to them.

I have some anxiety about macular edema because it’s new to me, and scary, and I find it comforting that my eye disease is something the Beetham Eye Clinic cares for every day.  It might feel like unfamiliar territory to me, but it’s just another day at the office for them, and for whatever reason, that comforts the hell out of me.

The staff at the eye clinic are very personable, and the technician who put in the dilation eye drops and tested my vision prior to the exam was extremely kind.  Their compassion helps put the feelings of trepidation to rest.  I don’t particularly care for the personality of the doctor, but in these appointments, we don’t really talk about “the whole patient.”  The focus is on the whole eyeball.  In this instance, I am willing to give on the relationship side of the HCP/patient equation in favor of his expertise.  Besides, it was easier to feel less aggravated by a doctor who speaks more to the computer screen than to the patient because this time, the news continued to be good.

This screen is how your eye looked in December,” pointing to a swollen optic nerve and a bright, obvious fat deposit on that nerve.  “And this is how it looks today,” pointing to a screen showing significantly reduced swelling and a barely visible fat deposit.  “This is better.  Much better.”

“So I’m still moving in the right direction?”

“Yes, this is good progress.  We can continue with appointments every six months.”

Last year, I had no idea I had this complication.  The symptoms of macular edema are hard to detect unless the eye damage takes a significant turn.  I had no idea something was brewing in my eyes until it was detected – and early, at that – by a dilated eye exam and a team of excellent doctors.  Eye-related diabetes complications unnerve me, but I’d rather know about them and track them aggressively rather than be surprised by them and experience irreversible damage.

We spent hours in the car getting there, considerable time in the waiting room, and then hours in the car on the drive home.  But I’d do it all over again, and will in a few months, in order to keep close watch on this diabetes complication.  My doctors can only help me with the things I let them know about by way of routine exams and screenings.  Informed doctors make me an informed patient, and everyone being well-informed helps me stay healthy.

I’d rather hope to regain good health than to fear the unknown.

14 Comments Post a comment
  1. Very well said, and very glad to hear that things are improving. Thank you for talking about the “scary stuff” – these conversations are important. And yay for Hope.

    05/21/14; 10:34 am
  2. I am so glad to hear your eye has improved! And was that without any kind of treatment? If so, even better!! Since I’m in a similar boat, I completely understand your anxiety. I would be willing to visit the retina specialist every month if it meant a closer watch on the situation.

    05/21/14; 10:38 am
  3. Lindsay #

    Amen! I go for my annual eye exam on Friday! I’m always a bit nervous but like you said it’s better to know and improve than not know and things just get worse.

    05/21/14; 11:04 am
  4. Carol #

    Thank you for sharing this, Kerri. I totally relate to the trust you have in your team. I have an excellent vitreo-retinal surgeon here in New York and I go every 6 months for follow-up. I started with him in 1982 and it is now 32 years. I don’t know what would happen to me if it wasn’t for him. I am so glad to know that you have a team at Joslin that you trust and that is caring for you.

    05/21/14; 11:51 am
  5. Thank you for always telling it like it is. I’m on the HOPE wagon with you. I have my first-ever appointment with a retina specialist in a couple of weeks. It’s scary, but I know I can fight to be healthy, and I know I’m not alone. Glad things are looking better for you!

    05/21/14; 12:24 pm
    • Join me on this wagon, lady. I’m sorry you’re dealing with eye issues, but I’m glad you’re seeing the right kind of doc for it. xo

      05/21/14; 1:36 pm
  6. k2 #

    I’m so glad you had a great visit and honestly, I just want to give you a hug!
    Just had my exam this morning and yes indeed, knowledge is power and hope does indeed float!

    05/21/14; 3:02 pm
  7. Yes, it’s a long day and a hassle but you’re very fortunate to have access to the Beetham Eye Clinic. I’m happy that you received positive news and are headed in the right direction.

    When I received a diagnosis of macular edema it was after severe damage had already occurred in one eye, 2 1/2 years after I started having vision problems and asking my doctor what was wrong.

    I hope your news continues to be positive.

    05/21/14; 8:32 pm
  8. Stacy #

    I had to have an appointment with a retina specialist and I was so nervous the weeks before it. Thankfully, it was nothing that the specialist was concerned about, but I was glad that I got it checked out. I will continue to have yearly appointments with both my Optometrist and the specialist.

    I work in the Joslin Center area and walking past it during lunch breaks, makes me so happy knowing that so many people are being helped there and the amazing research they are conducting there and how it will help us. So thankful to them!

    05/21/14; 9:52 pm
  9. Kathy W. #

    That is excellent news. Go you!

    05/22/14; 4:17 pm
  10. e-Patient Dave #

    Susannah Fox’s post today sent me here, and I’m glad. You’re a great writer. Articulate, expressive, and a powerful communicator.

    01/10/15; 2:49 pm
  11. Hi Kerri – I too was diagnosed with Mac. Edema this year. I’ve been a T1 diabetic for 38 years. You don’t know what eye pain is until you’ve had the laser treatments, the photos of your retina (ouch) and now I have finally had my first set of Eyelea injections, one in each eye. I have my second set coming up on Monday. I see Dr Magdalena Kryzstolik. She is a Retinologist with offices in Plainville and Providence. Her office is now part of Mass Eye and Ear. I recommend her very highly. I know Joslin is THE place to go but look into Dr K. I’ve been seeing (no pun intended) her for 8 years now.
    I enjoyed reading your story of your visit to your Retinologist’s. I was re-living many of my visits while reading about your visit. Even the equipment brings up memories, some very painful. I am very nervous about my upcoming injections on Monday. Wish me luck! Steve

    12/10/15; 10:39 am

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