Sunday, June 25, 2017

The Eyes Have It: Part Two

I went to see the retina specialist on Friday.  Carl drove me in to the appointment, which was a good thing, because we encountered road construction and detours and it took two of us to figure out where we were going.

After a round of tests, my eyes were dilated again and we sat and waited for the drops to take effect.  When the doctor came in, he gave us both a firm handshake and went right to work.

Shining a horrendously bright light into my eyes and bidding me to look up, look right, look down right, look down, look down left, look left, look up left, look up, in rapid succession, and raising my droopy eyelids with his finger, he finally backed away from me on his rolling stool and said, "You have the early signs of macular degeneration."

As he was washing his hands, he said, "Do you have any questions?"

I was sitting in the chair, blinking, thinking.  Macular degeneration? This doesn't sound good.

"Is there anything I can do about it?" I asked.

"No.  There's no cure," he said, moving on to dry his hands.

"So I will go blind?"

"Not entirely, you may be left with what is called 'low vision'.  Mostly, you will lose the ability to focus with your central vision.  It will be similar to looking through a piece of glass with a big smear of Vaseline in the middle, or the middle may go dark.  You'll probably still have peripheral vision, though.  This could take decades to develop, or it could be you'll wake up one morning and it will be there."


"I brought my mother to this clinic a few weeks before she died because she developed a black curtain-like thing hanging down.  The doctor injected her eyes with Avastin," I said, "What was that for?"

"That was wet macular degeneration," he replied.  "Maybe you'll get lucky and hold off on progressing to that stage until you're 96.  But there are no guarantees.  Here is a pamphlet describing the problem for you to read up on," he said.  

"You're in the very early stages, so at this point, I could prescribe you AREDs, (vitamins for macular degeneration) but it may be a bit soon for that, it all depends on how fast it develops with you.  All cases are different.   Hopefully, by the time your case becomes advanced, there will be some new treatments in place, you never know.  I'm going to send the nurse in and she will teach you how to check for emergency signs of loss of vision.  Otherwise, I'll see you back in two weeks.  Nice to meet you."

Another firm handshake all around and he was gone.

The nurse came in and told me to cover my right eye with my hand, put my arm out to the side and wiggle my fingers.  I should be able to see my fingers at the top, middle and bottom range of my arm's movement.  Now, cover your left eye and do the same thing, and if at some point I cannot see my wiggling fingers, I'm to call right away for that is an emergency.  

Um, ok.  

All right, you can go to the appointment desk now.  

"Hmmmm, the doctor wants to see you in two weeks, but he's on vacation in two weeks, so you will have to come back in three weeks," the receptionist said.

Three weeks puts us in the week of July 15, when we are having a tour group from Iowa I am still driving an hour every other week for Lyme disease treatments, so I asked, "Would it be possible to move it to the week after?"

"He wants to see you in two weeks, and we're already moving it to three weeks, so no, we will not move it to the week after," she replied firmly.

So, appointment card in hand, we made our way down the elevator, out to the parking lot and into the car.  About halfway home, I broke down crying in self pity and fear.

Carl tried to comfort me, but the tears were rolling.  Everything I was looking at was beautiful, the sky, the clouds, even the weeds in the ditch, and to think I may be losing the ability to see was overwhelming.  

And still is.  

To be unable to see sights like this......makes my heart hurt.

How often we take things for granted, but I must say, my vision was not one of those things I took lightly.  I've worn glasses for severe nearsightedness since I was eight years old and have always had the nagging worry someday they might not be able to correct my sight any longer.  I've entertained learning Braille before I ever went blind, and practiced filling water glasses with my eyes shut out of the sheer dread that someday I would be sightless.  Worry warts like me tend to be almost Boy Scout-like in our lives, "Be Prepared."

But even though I've often thought of the possibility of being vision-impaired, nothing prepared me for the diagnosis, even though he used the word 'early'.  Right away my mind jumped to worst case scenarios.  

And when I got home and sat with the pamphlet in my lap and 'age related macular degeneration' in the Google search box and started reading, my fear grew.  I now had many questions, but wasn't sure which type of AMD I had.

Ironically, at that moment, the phone rang. It was the retinal specialist.

"Did you have any questions?" he asked.

I was wiping away my tears, and I said, "What type of AMD do I have?  Wet or dry?"

"Dry!  If you had wet, we'd be using a laser or eye injections to try to preserve what vision you'd have left, no, you have the dry form, in the early stages.  Any other questions?" he asked.

"None that I can think of, " I mumbled.  Truth be told, my mind was reeling, I wasn't thinking straight. 

"All right, then.  I'll see you in two weeks."  

I was still holding the phone and almost said, "No, you'll be seeing me in three weeks," but the line was already dead.

And you all know what I did, I went on a virtual terrifying search of all things AMD related.  The good, the bad, the ugly.  They're all there on the interwebs.  Some things are hopeful, some are not, some are dubious cures, some are malarkey, most are unknown either way.  All are guaranteed to be expensive.  But what price can I put on my eyesight?

I've known two people who had AMD; yes, they continued to live their lives, but their personalities were greatly dimmed along with their vision.  I'm sure it was because they couldn't see the faces of the people they were trying to communicate with and were unable to read expressions.  For all intents and purposes, their ability to function was profoundly diminished and depression settled in.  

I've had a foretaste of this insidious vision problem with the migraine auras and I know how awful it is to not be able to see anything you actually try to focus on.  The first time it happened, Carl was driving, and I thought I'd caught the flash of a mirror or something in the bright winter light, causing a spot on my vision (like a flash from a camera leaves the spot on your sight. ) 

I tried to blink to clear my vision, but the spot grew and suddenly oncoming cars would disappear as I looked at them.  When I looked at Carl's face, all I could see was his hands on the steering wheel.  I was so scared.  Everything I looked at directly was gone in a black hole.  It was awful.  After ten minutes, my sight slowly trickled back in, but then bright, scintillating lights in the shape of a vast floater were flashing in my eye.  After the light show diminished, a massive migraine descended, but my eyesight was back to normal. 

I had gone to the eye doctor after this, and was told what I'd experienced was a 'scintillating scotoma' and though it affects the eye, it's actually a brain problem.  (Is that supposed to make me feel any better??)  Two years ago I kept track and I had one or two episodes a day on and off for over six months.  I have not had another now for over a year.  I do not miss them.  

But having this diagnosis is still frightening.  One website put it this way:  'The diagnosis is almost as upsetting as the loss of a family member.'  And I couldn't agree more.  I feel like I have a double helping of mourning going on right now.

Yesterday, Saturday, Carl was gone all day helping to move equipment from his late brother's shop.  I was home alone.  Joel and Dave also came over to help Carl with the job.  I was at loose ends.  I should have been out in the garden weeding (as I should be right now) but the way I deal with uncertainty is to write.  I keep a journal and I was writing my fears out, and then realized that in the future, maybe distant, maybe not so distant, I won't even be able to do that for lack of sight.  Cue the tears again.  Poor eyes, they are being assailed on all fronts.

I picked up the phone and called my dear friends.  Just hearing their concern and some stories of how their parents or other friends are coping with AMD helped to calm me.  I am not alone. What would I do without my friends?  I don't want to know.

And then a familiar vehicle drove in.  It was Abby with little Audrey, come to cheer me up.  How kind of Abby to come and offer her comfort and the presence of sweet Audrey took my mind off my problems.  I didn't take any pictures yesterday, my eyes were too sore, but I'm including a picture Joel sent me a few days ago.
Who can be sad around this little girl?

 I had no appetite yesterday, and sadly not much ambition to do anything.  I was not a very good hostess.  

When it was naptime for Audrey, Abby left for home.  I wandered out to the garden and half-heartedly pulled some weeds.  I was the picture of dejection again. 
 I am ashamed of myself, this will not do.  My vision is just another thing I'll have to learn to deal with, maybe tomorrow, maybe in thirty years or so.  Every one has problems, I'm not a Special Snowflake.

 As the Charlie Brown cartoon so wisely states:
Some day, I might not see well.  

But on all the other days, I will.


Garden Fancy said...

Karen, I'm so sorry to read of your Macular Degeneration diagnosis. What a very difficult thing to hear! :-( I hope that you won't experience any problems for many years -- we do tend to take after our parents, you know, so it's more than likely that you could be just fine until you're 96. Please know that my heart and prayers are with you and your family -- when you are at your darkest, remember how blessed you are to have them. With Sympathy, -Beth

susie @ persimmon moon cottage said...

I'm sorry to hear that you were diagnosed with Macular Degeneration. Maybe I am just not living in the real world, but it seemed to me that your eye doctor could have taken a bit more time explaining things to you and should have given you some time to absorb such a serious diagnosis. It would be like punching someone in the face and then asking them if they had any questions. You didn't know enough about Macular Degeneration at that point to have even thought of any questions. It is such a desolate, desperate feeling to be googling illness information and trying to sort what is truth and what is baloney.

Are there any other eye doctors in your area that might be more patient with their patients? You will be in my prayers. Take care.

Susie D.

Ellie's friend from canada said...

Oh Karen, I'm so sorry about the diagnosis of AMD but with any luck it will progress slowly if at all and hopefully only in one eye. I have a friend who is now in her late 80s who has had the dry kind for years with no progression. My mother had wet macular degeneration. She was legally blind in one eye, but I was in the car with her one day while she was driving (because she had perfect vision in the other eye), when I realized she couldn't see. Unfortunately, she had had a bleed in the very centre of her vision of her good eye and she never drove again. It was just colossally bad luck. God was certainly with us on our way home (a very short distance) that day.

And yet when I see the lovely photo of your mother with the flowers and her huge smile, she reminds me of my mother –– cheery, uncomplaining, finding great joy in life in spite of adversity. I am telling you this not to scare you but to tell you that even being legally blind she still could see many things. She told me once something like a cow had just run down the sidewalk. My brother didn't believe her so I went to investigate. What she had seen was a huge deer (from quite a distance and only momentarily). She still saw a hummingbird. She read books with a magnifying glass and relished it.

What bothers me about your trip to the retinal specialist is did he say anything about the vitreous detachment? Are you still seeing the horse? Did he look for any hole in your retina? I assume that's what "look up, look left etc etc" was all about to give him a thorough view of your retina. I think he realized he'd been abrupt and that's why he called you which is to his credit. I'll keep my fingers crossed that it doesn't progress, that you will have many years of vision ahead of you. You only need 1 good eye, you know. I have lived with ongoing retinal damage for years. Could you do me a favour and avoid bending over or carrying heavy objects until you know whether there is a tiny tear in your retina? Or phone him and ask about the vitreous detachment and if he saw any tiny tear in your retina.


Thanks so much for the lovely photo of Yellow Lady's-slipper Orchids. Beautiful. Now, it's time to relish our world and the beauty we see in it.

Karen said...

Beth, thank you. I do hope I take after my mother; that would be wonderful. I just need to get out from under the dark cloud of worry that is following me around. Thank you for thinking of me.

Karen said...

Susie D, I agree, the way the doctor presented me with the news left a lot to be desired. I did indeed feel as if I'd been punched in the face; the thought of going blind is terrifying. I suppose that is why he called me back when I got home, but even then, I didn't know what questions to ask. Now I have a list I will bombard him with at my next appointment. Thank you for thinking of me. :-)

Karen said...

Ann, thank you. It is heartening to know other people share many of the same ailments and still manage to find joy in their lives. I know my mother went forward with painting her pinecones even after her vision deteriorated, just a few hours before she passed away. She, like your mother, was a great example of strength!

He didn't mention any problem with the retina, though I'm assuming that is why he wants me to return in three weeks. I have been very careful not to lift much or increase pressure in my eye just in case. Thank you so much for your caring support, Ann. I know I have to move forward and not stay stuck in panic mode much longer. I'm wasting the good days anticipating the bad ones to come. Thank you again. :-)

klaraau01 said...

Hi Karen, your post caught my eye and if I can respectively make a suggestion - Please do a search about the work of Dr.Mark Babizhayev MA, PhD and his work and then Walter Pierpaoli MD, PhD - Switzerland, specifically ARMeD™ Retinal Support, including clinical studies. I dont know if I can post a link, but here it is -
if you can't see the link, then visit and look on the left side for macular degeneration.
while your doctor is well meaning, not all of them familiar with latest research, and some, I found by myself, not interested in curing eye problems. I had some issues myself and been told by numerous specialists that nothing I can do about it, not true, I have done it, and you can do it too. I have asked the eye doctors - what do you think of this alternative treatment, and been told that there is no scientific evidence that it works, they just not familiar with it, but who needs it, when my eyes improved substantially?

No need to post my comment on your blog, I just written it for you personally, to let you know that there is always hope


Karen said...

Klara, thank you! I will indeed look into the links you posted. I was very surprised when the doctor's advice was to basically do nothing. It truly seems like there should be something that could be done, and I'm wide open for advice. Thank you again, Klara!

Betsy said...

You do research and get all the information you can about this. Just seems that medicine has advanced a little more than the do nothing attitude of the doctor you saw and must be things to try today. I am so sorry to hear this and I know you were just shocked and hurt so bad. My mom has it and has had it for years, doctor told her to take a medicine over the counter (can't think of the name) it's more of a vitamin really for the eyes. She does her jumble puzzle and never complains about not seeing.
Blessings to you

Alison said...

Karen, Please forgive me for taking so long to post a comment to this post, I read it (and all your gazebo-moving posts) while I was away, on my phone, and commenting from my phone is difficult. I was sending you virtual hugs from far away, I hope you could feel them. Hugs and love and sympathy. You got not much sympathy from the doc, he sounds like a bit of an a$$. I've heard that the actress Judi Dench has macular degeneration, and she's still practicing her craft and living a full life.

Karen said...

Betsy, thank you! I'm so glad to hear your mother is still sighted, that's a blessing. To tell you the truth, I've been shedding a lot of tears in between doing research. I've got to get over the shock and move forward with what will hopefully help. I will definitely look into the vitamins, and I will also be asking the retinal specialist a list of questions I have compiled. Thank you so much for thinking of me. :-)

Karen said...

Alison, thank you! I do believe I did feel the hugs, and I'm sending them right back to you. :-) I'm hoping the doctor was right about new procedures coming out in the near future; right now my sight is ok except for the floaters which, ironically, have not much to do with AMD. I'm sure these doctors tell people the same thing, day in and day out, but there must be a better way to phrase it. Though come to think of it, how exactly do you tell someone they have an incurable eye disease gently? I've been doing a lot of reading; there are trials out there, maybe something will finally work. Thank you for thinking of me.

Beth @ PlantPostings said...

Oh dear heavens, I'm bawling my eyes out now. I'm sorry, Karen. I'm a little worried about one of my eyes, and I'm going in to the eye doc tomorrow. I'll keep you posted. My dad and grandmother had macular degeneration. Dad has had treatment for it, along with some other eye conditions. He can still see, and he still drives, but he really shouldn't. I've been thinking lately, too, about how different life would be without sight (especially for a gardener/nature-lover). I'm storing up "vision memories." I don't take it for granted at all. Prayers. Hugs.

Karen said...

Beth, I'm sending prayers that the eye doctor finds nothing wrong with your eye tomorrow. I would think that with the rapidly growing elder population (though at 59, I don't feel elderly...yet) there would be some breakthrough in treatment. Surely with all the technology there must be something that can be done. Sending hugs to you, Beth.

Indie said...

Oh no, Karen! I can't imagine hearing such news. And the doctor's bedside manner sounds lacking, indeed. I have a friend in her 80's with the wet kind, and I know how much she worries about it. I hope that it is very very slow to progress, and the worry will be for nothing. *hugs*

chavliness said...
This comment has been removed by the author.
outlawgardener said...

The snoopy cartoon shows that, despite your fears and the grief of this whole year, there's still a glimmer of hope for tomorrow. On the bright side, if you do start to loose your vision, you also won't see those pesky weeds in your garden. I agree with the others that your Doctor's bedside manner in breaking such news was not the best.