Adventures in Gluten (and Sugar) Freedom from a southern blogger chick!

Sunday, March 6, 2011

How it feels to go blind.

This post has been weighing heavily on my heart for a month, but I decided that tonight should be the night I should write it.  I post it at the beginning of No Boundaries Week at Georgia College, and I post it after the beginning of a new phase of treatment of my medical struggle.

It serves as an update to my friends -- whom I cherish and treasure.  To those who wish to continue to use my illness against me, I document the truth here.

But it also serves as a reminder that I am approaching the one-year anniversary of this chronic illness that caused me to lose my right eye vision. Sometime around March 26 last year I lost my vision to Temporal/Giant Cell Arteritis that deadened the top optic nerve in my right eye and left me unable to see much more than a small sliver of light at the top of my eye. For this I've been treated with Prednisone and Methotrexate, a chemo drug, since April 20 and August 27, respectively, by a doctor at the Mayo Clinic.

I take those meds with all the medications it takes to fight the infections I catch because I'm two immunosupressants, the insulin I must take daily, and the other pills that fight the effects of the Prednisone.

I hate it all. Every minute of every day.

Honestly? Eleven months into this, I am more tired of this than you are tired of hearing about it and caring about it.  And very few of you know the real story and how it has changed since February. But I assure you, just because I'm not talking about it doesn't mean I'm not feeling a lot of pain, stress and anguish every day.

But I sure know you're tired of hearing about it.  I can tell by the way people, well, avoid me.  Except for a small core of friends, I won't even give most people a true update. But I am sad to see my zeal and zest for life disappearing.

But in the last month, things have not been fine, and I have had a rough time.

Here's what happened, and here's where we are:

On Wednesday, Feb. 2, while talking to friends at a GCSU basketball game, I had a parade of black floaters go across my left eye, then my vision blurred.  A few seconds later, everything in my left eye was turned orange.  Looking through my only seeing eye, my left eye, I saw something just like this:

I remember trying to walk the wall of the Centennial Center to get to a room where I could sit down and call my doctor.  I called him. I called Randy.  I called Lori to get the prayer chain going. Then i prayed,

My eye doctor (who knows I lack vision in my right eye from Giant Cell/Temporal Arteritis, responded to my emergency call and scheduled a meeting the next morning.  My friend Patti drove me and Jeffrey home, and I proceeded to stumble around my house seeing....nothing. Orange and a small arc of light, but no faces, no shapes, no numbers, no televisions, no Randy, no Jeffrey, nothing.

That night, for a few hours, I knew what it felt like to be blind, and I knew what my life would be like if I should go fully blind in my future. I took meds to sleep, and when I woke up at 4 a.m., my eye was filled with black floaters that covered the front of my eye.

I'd had a vitreous hemorrhage.  It is a byproduct, in my left eye, of my ongoing, more than 20-year fight with diabetes. Ironically, it came at a time when my A1C had dropped into the 6 range and my daily blood sugar control had been its most accurate. I'd also lost 25 pounds since October.

Two eye doctor's appointments and three weeks later, and I found I had to begin to undergo something called Pan Retinal Photocoagulation. It looks something like this. It HURT like someone was poking me in the a couple of hundred times with a sharp stick.  And I have to repeat the treatment a few more times, perhaps more. My next treatment is March 18, the first day of Spring break.  The treatments won't improve my vision (I still have the nasty floaters) BUT my doctor hopes I'll keep from throwing another vitreous hemorrhage.  Here's what the treatment looks like.

OK, so what's the point of this?  In losing my vision Feb. 2, I saw my future.  I don't like it. And I probably can't do anything about it. I mean, seriously.  The damage to my left eye continues to occur in spite of the fact that I've done all I've been instructed to do by my doctor at the Mayo Clinic (I mean, what kind of idiot goes on a diet and loses 25 pounds while on Prednisone, fighting a Thyroid disorder, and taking a large self-injected chemo shot once a week?) I continue to teach my classes, try to serve my students and their organizations, and try not to let my family and loved ones down. I am blessed to be treated by the greatest doctor in the world, Dr. Katy Gustafson Roberts, and her current brilliant nurse Christy (and her brilliantt former nurse Karen).  She treats me with respect and honestly, but I have been on nine rounds of antibiotics since August 15 AND am in the office at least once a week for some kind of bloodwork.

And I am still in an awkward place. I have two eye disorders, one autoimmune, one caused by diabetic retinopathy, still fighting against each other. The treatment of the crap in the right impacts the behavior of the crap in the left.  The lady? or the Tiger?

And either way, I fear my days of seeing things AT ALL are numbered. And that saddens and scares me immensely at the same time.  I feel like Scrooge did when he saw the ghost of Christmas future -- except I wasn't asleep -- I was wide awake and scared to death from that moment until right now.

I want to say I continue to appreciate and covet your concern, karma, prayer and care, and I appreciate your patience with me right now.  As I've been reminded several times lately, I'm not a very good friend or good company any more. I even understand those of you who don't have a clue WHAT to do or say (that happened to me last year -- a dear friend had a car accident that caused her enormous medical problems.  I had no clue WHAT to do, so I became the worst friend ever. Other than pray, I did nothing.  Suddenly, I get that.)  Randy is a trooper.

I appreciate those of you who understand that is beyond my control. And I especially appreciate those of you who don't tell me "feel better soon," or "Cheer up," because face it, it ain't gonna happen. The longer this goes on, the longer I fear it will drag on.

Until the day comes that I lose my vision permanently.

Last week, finally, I read something someone posted on Twitter.  It was called "The Spoon Theory" and it was about dealing with Chronic Illness.  This person has lupus, which is different from my chronic illnesses, but the theory applies.  And I beautifully describes my life every day.

Read The Spoon Theory by Christine Miserandino Here: 

I send you all much love and thanks.



Kaylene said...

Ginger, I know autoimmune diseases are often related (lupus and celiac, celiac and psoriasis) but how about your celiac and your right eye condition? I have a daughter with psoriasis who I'm pretty sure has celiac disease. She needs to get tested.

I'm afraid I am like everyone else and don't know what to say. Except that losing my eyesight would be one of my greatest fears. I would live without the hearing, even the smell and touch, but not the eyes. I admire that you are able to talk about this now. And I am so sorry that friends have been few. Wish I lived closer and we could get together and commiserate. This celiac is total pain at times, literally and figuratively speaking, as you well know.

iLiveinmyLab said...

Spoon Theory = Awesomeness

I came across it years ago when I was going through a rough patch medically and it really helped me work through with how I view things. *hugs*

Kate said...


Joy Peterson said...

Goodness, Carter! I have been following your facebook posts and getting updates from Julie as often as we could touch base. I am praying fervently for you. I can't imagine what that must feel like and along with prayers for you, Randy and Jeffery, I'll send up prayers for your physicians. It sounds as though you are in very capable hands. And let's be thankful for insurance too! It could be worse (not that this is meant to make you feel better, but moreso a reminder for us to be thankful for what we have or have access to.) Please keep us posted as your time and energy permit.

Question: did you diabetes go uncontrolled for a long time? I'm inquiring because my mom is diabetic...I worry about her vision at times too and her circulation.

Take care!

Joy Peterson

marylandceliac said...

I admire your strength and courage for writing this and dealing with your vision challenges. I hope that the love and support of your close friends and family will help you. It is an incredibly difficult situation, and I wish I had more to say than I am thinking of you.

Jamie Nicole said...

This post really touched me, and I really admire your strength.

I didn't know you were going through all of this. But, I have seen some of your Facebook statuses, and please know that you have been in my thoughts and prayers, and I will continue to pray for you.

I wish you the very best and much love! ^_^

Ellen said...

I'm sorry.

Cindy B said...

Ginger - Just found your blog through FB. I am so sorry to see this update. Please know you are in my prayers - as well as your precious family. I am sure Misty is watching over you too. Love you - Cindy

Tiffany said...

Georgia - I realize I haven't seen you since this horribly scary incident happened. But I'd like to share that when we saw you in Jan., you were already going through so very much - more in fact than most of us could ever bear. Yet, you had a smile, funny stories to share and your genuinely wonderful sense of humor in tact. This is not to say that you were not in pain or that you pretended you felt fabulous. You are always honest which I so appreciate. I enjoy the company of real people and you happen to be exactly that - real. I believe your tremendous spirit is part of what makes you so remarkable. I know none of what you're going though is easy to accept. But I truly believe that you will get through this and I hope one day you are able to look back on this time and marvel at how you made it through to the other side. You inspire me and so many others that you will never know about. Keep on truckin' are needed in this world ;)

lntpita said...

hugs from your friend in iowa sending out prayers too you
love julie(NE Iowa)

PureAlan said...

I was diagnosed with hypothyroidism last December. I started taking desiccated thyroid and I'm taking it up to now. It stopped my gaining weight and stopped my hair from thinning, too. I was surprised! It was a dramatic improvement.

chesley said...

Ginger, I see you all the time and I had no idea of the pain and frustration you are going through. In fact, our last conversation was completely about you helping me. Have you talked to Zel?

PureAlan said...

I was diagnosed with hypothyroidism last December. I started taking desiccated thryoid and I'm taking it up to now. It stopped my gaining weight and stopped my hair from thinning, too. I was surprised! It was a dramatic improvement.