The Giant Reveal

This photo is special to me for two reasons.  First, because it was taken at the Mother's Day Brunch at my daughter's preschool, and we had a wonderful day together.  Second, it is the last photo taken in which I was normal.  Two weeks after this photo was taken, I started having issues with my left eye.  My eye was blurring and felt "tired" all the time.  I went to a local optometrist who told me I had allergies and he placed me on steroid drops.

Two days later, I just knew in my gut that I was not suffering from allergies.  I did some searching online and was horrified to realize that I had all the symptoms of a parasitic infection that is life threatening.  I called an opthamologist, explained my symptoms and they got me right in for an appointment.  I told them what I suspected and they assured me that such an infection is rare and I most likely had a bacterial or viral infection and started me on drops and oral medications.  Unfortunately, I continued to get worse and on June 16th, while at a martial arts tournament with my son, I lost all vision in the eye.

I woke at 3:30 am the following day in the worst pain of my life.  I called the opthamologist's office and they had me report to them for an emergency visit.  I had to wrap my head in a towel to get there as the pain from any light was excruciating.  When I removed the towel at the doctor's office my fears that I was in trouble were confirmed by the doctor's reaction.  He immediately called a specialist's office in Boston and told my husband that we needed to drive down right that moment.   Unfortunately, we had no time to find a babysitter for our 3 kids, aged 2 to 7 at the time and headed to Boston with all 3 kids still in pajamas and only the 2 diapers I had stuffed in the glove compartment.

At Boston, my worst fears were confirmed.  I did indeed have the parasitic infection,  Acanthamoeba keratitis.  It is a very aggressive parasite that eats and destroys the cornea of the eye.  If it manages to get through the cornea, the eye must be removed to prevent access to the brain.  The doctors in Boston felt I wasn't at that point yet and started me on a regiment of drops to try to stop and kill the parasite.  I had to use 7 different drops every hour, 5 minutes apart, 24 hours a day.

I eventually wound up in the ICU at Tuft's and had an emergency corneal transplant in an effort to prevent the parasite from entering my eye and having access to my brain.  We knew the transplant would fail, and I would need another one in the future, but I was happy to know that I was parasite free.  Unfortunately, I developed trauma induced  glaucoma as a result of the parasite and the toxic drops I had to use and a cataract formed.  In the spring of 2008, I had a second corneal transplant and had the cataract removed.  It was during this surgery that it was determined that the glaucoma had damaged the optic nerve and I had only shadow vision.  The glaucoma was also causing significant pain.  It would spike into the 60's and 70's and I would have to go and have fluid drained out with a needle.  I eventually had a patch and shunt implanted to drain the fluid out.  I had been on oral steroids for almost 2 years to prevent the transplant from failing.  In addition to acne, facial hair and a 60 pound weight gain, I also developed high blood pressure.  As a result, I hemorrhaged behind the eye and had to be rushed to the ER where they cut my eyelids to allow the eyeball to come forward and allow all the blood that was behind it to get out.

(Big black eye and "moon" face from steroids)

I continued to try and save my eye, but it took its toll.  I had to travel 2 hours each way a few times each month to go and have it checked, to have stitches pulled that had come loose, to get new prescriptions for ulcerations that would form on the surface.  I was in pain almost every day and it was affecting my ability to be the mom I wanted to be for my children.  Cosmetically, the eye was starting to wander and to shrink.  In August of 2011, I went for a visit with the occular plastic surgeon to discuss my options, and it became clear that it was time to end my struggle.  After breaking down and crying like a baby, I scheduled my enucleation for November 3rd. 

(November 5th, sporting my compression bandage)

My surgery went well and I was fortunate to have my parents willing to come and stay with us to help keep life as normal as possible.  I also had tons of support from family and friends and to this day I swear I healed both emotionally and physically so quickly due to all the prayers that were sent up for me.  I had to wait until mid December to go and have a prosthesis made.  Most people assume that when you have a fake eye, it is put in your socket when the real eye is removed.  It isn't.  A small implant is put inside your socket and either covered with your own tissue or that of a donor.  I had limited tissue that could be used, as there was so much damage, so donor tissue had to used.  The prosthesis is like a really, really thick, really big contact lens that fits over the implant.  I can take it out and clean it and then put it right back in. 

 (My new eye!)

The most common question I am asked is what does it look like without the prosthesis in the socket.  I did post a picture on my facebook page about a week after surgery of myself without the patch on.  However, I had in the socket a clear conformer which maintained the shape of my eyelids.  Very, very few people have seen me without anything in the socket.  This is going to be the big reveal!  

Its a lot less gross than most people are expecting.  It is still hard for me to look at sometimes, I'll admit that.  And neither of my sons will look at me when my eye is out.  In fact, it was my daughter who took these for me, when I took my eye out today to clean it.  I wanted to be able to show people that it isn't that bad looking, particularly people who are at the start of their journey with losing their sight and possibly choosing to have their eye removed.  

 First I slide the top of the prosthesis under my top lid.

 Then I pull down my lower lid and let the prosthesis settle before allowing the lid to slide back up.

 The paint job is amazing!  It matches the other iris exactly, as does the blood vessels they added.

I still may have some cosmetic work done.  The parasite and drops caused me to lose a lot of the fatty tissue so there is a noticeable difference when my glasses are off.  But for now, I am enjoying 6+ months of good health and no pain medications or drops or trips back and forth to Boston for medical visits.  Maybe next year I'll talk with the occular plastic surgeon about using some fillers and stitching up the lids a bit to match the other side.  Then again, maybe I won't.  

Stella turns 1!

Today is my Stella's first birthday!  All the dog hair aside, it has been a great year with her.  She is just a fabulous dog and I am so pleased that I took a lot of time to find her.  


I grew up with dogs, usually strays that my father, an animal lover, brought home.  My husband and I got our first dog just before our first anniversary.  Otis was a crazy dog.  Otis would make the infamous Marley look like a dream.  He ate our floor.  He ate our walls.  He ate the handle of my sliding glass doors.  He paced all night long.  He took ritalin, and it didn't help.  I took him on 6 and 7 mile walks through the woods, throwing a ball to him and making him come back, and it didn't help.  He started nipping after our first child was born and the vet recommended we find him a new home.  We kept in touch with his new owners, who let him roam their 80 acre farm.  He ate all their lampshades and pulled the woman into a roadside ditch during a walk and broke her leg.  They loved him and kept him until he passed away a few years ago.  


We let years go by before considering another dog.  We did a brief stint with Dirty Gertie, a cairn terrier we rescued.  However, the two sets of bald eagles nesting behind our home made it clear that they considered Dirty Gertie to be an appetizer.  After the third day of them circling above our yard, we found her another home. And I swore, no more dogs.


I held true to that for a long time.  3 kids, one diagnosed on the autism disorder spectrum, juggling activities, therapies, school, home and my own illness made it easy to dismiss any suggestions to add a pet to the mix.  Because all of us mothers know that "We'll take care of it!" is perhaps the biggest lie to ever cross any child's lips!  And I just didn't need one more responsibility.  


My youngest haunted me non-stop for a dog.  He wanted a dog "so much".  And, in a moment of weakness, while dealing with pain and potty training, I told him that when he peed and pooped on the potty all the time and my eye was better, we would get a dog.  Soon, he was indeed fully trained and diapers were a thing of the past.  About a year later, my eye was as healthy as it was going to get and he turned to me and said, "I'm using the toilet and your eye is better, so where the hell is my dog?" (his potty mouth is a whole other story!)  And so the search began.  


I had initially wanted to do a rescue, but found my choices limited.  I am straight up admitting that I do not like pit bulls.  I know there are those out there that love them and think they have gotten a bad rap.  I don't care.  I don't like them and I did not want a dog that was part pit bull, and the shelters here are full of them.  Its also pretty expensive to adopt here.  At least $200 to $300 and I figured if I was going to spend that, I might as well spend a little more and get what I wanted.  And Stella is what I wanted!


Even though my kids love her and she loves them, she is my dog.  She spends almost all day with me, so its not a surprise.  There are mornings when I think life would be easier if I could sleep in just an hour longer and not have to get up to walk her and feed her.  But I credit her with how quickly I healed following my final surgery.  Once my parents left to return home, I had no choice but to get up and feed her and couldn't climb back into bed and feel sorry for myself after the kids got on the bus for school.  I had a dog that needed to walk.  So we walked.  Short distances at first, and then longer and longer.  And I met neighbors that I hadn't even known existed.  They would walk over to pet Stella and introduce themselves.  And they would say hi the next day as we walked by.  And then they started keeping track of my recovery and offering to help if I needed it.  And I avoided the depression I felt nipping at the edges since losing my eye.  None of that would have happened if we didn't have Stella.


Happy Birthday Stella!