Really? Many decisions hinge on sight.

Here I am in the throes of increasing the quality of my life with low vision and I have one child getting ready to start high school and the other middle school.  I have filled ou choice applications and am getting phone calls for "requests of acceptance".  Which is AWESOME.  But when EVERY single decision I make has to take into consideration my ability to drive based on my vision it makes things stressful.  My son has chosen a great high school in a neighboring town. That turns out to be a good choice since I know several families that have kids attending,so I have a good pool of folks to ask for help if the need arises.  Now enter middle school child.  She got accepted to a school 1.4 miles from where my son will be attending high school, however, their start time is 45 minutes later than my son's.  Ack.  All of this would be a no brainer if I had normal vision.  I actually feel guilty that my circumstances stand in the way of either of my kids access to great education. So, I said "yes" to the spot and am going to wait and see if I can make arrangements for this to all work out in the end.  I guess we'll find out come the end of the summer eh? Can I possible get some sleep before then????

God Unboxed

One of the hardest struggles I have faced is being a believer of Jesus and having a disabling condition.  There are a LOT (or it sure seems that way) of folks that can’t reconcile faith and disability.  I have been told I am arrogant, don’t pray enough, not humble enough, have some unexposed sin I am unwilling to relinquish and the list goes on. Why? Over the years I have been prayed for and over countless times for healing and reversal of this condition and instead it keeps marching on down the hill of deterioration.  Some may wonder why I continue on this path of spirituality, and this is my answer:  I am a believer of Jesus and friend of God because of who They are not because of how other believer’s behave, think or say They are.  I have been really lucky to keep a lot of the resentment at bay because of this simple fact.  And when I do get upset, I need to just go back to who I know God to be, not what others try to impress upon me.  I have learned to take God out of the box so many have stuffed Him into.

Good stuff happens when you are willing to work for it

Went in to DVR today.  They are working to help me optimize my working environments both in substitute teaching and with my Miche business.  They are paying for several things that my insurance would not pay for, and thus allowing me to set money aside for the items that they won't cover.  This way I am not paying for all the evaluations and traing and then having nothing left over to actually purchase the assistive technology I need to function at full capacity.  At a low vision support group several months ago someone suggested I look into DVR helping me.  They said the worst that could happen is they can't help.  Thus far it has been a total blessing.  I have had an assistive technoloy and low vision evaluation that DVR covered the cost.  I asked for a driving rehabilitation evaluation and I am going to get an authorization for that as well.  The process is something you have to be patient through, but with a little persistence and gratitude the results are amazing.

2nd Opinion

We went to Colorado Springs to see my old retina specialist.  He had pictures from back in 2004 and 2006, which when compared to today show that I indeed have scar expansion in my right eye. This explains all my vision loss in the last few years.  It would also explain the style of loss where there is a rapid decline and then slowly over 6-8 weeks it appears things improve. It is just simply the eye working to find a new focal point on the retina to bring images into and once it does and the eye gets used to this new spot , acuity improves. Also there is little to no difference between  maintenance on Avasitn and just treating when there is obvious activity.  Part of my problem has been when we have treated on a dry eye with no evidence of blood vessel growth, it appears to have a detrimental effect.  There is no harm in saying no to treatment if all is dry.  It is a bummer that it is scar expansion, because that is irreversible, and not preventable.  The good news is I am no longer in limbo wondering what is going on with my eye and why am I having such a tough go of it.

DISCLAIMER I swear I won't preach....

My story about my vision loss is also the story of my journey with God. Don't let that offend you.  I am not preaching or making any "statements", this is by no means an evangelizing blog.  It is simply part of my journey. On this journey I have survived a lot of well meaning church going folk, and I TOTALLY understand what it feels like to be condemned and judged because of my disability.  I wouldn't dream of hurting anyone like that. However, how my faith in God has evolved through this I believe is encouraging and uplifting.

Peace in an unlikely place.

Back when I was diagnosed with my condition, I was at a cross roads.  I had been raised Catholic but had stopped all attendance of an organized church for several years. I was attending a bible study studying about the parables of Jesus, which are some really incredible accounts of Chris’ life on earth. I was intrigued and skeptical. So when stuff started to hit the proverbial fan I guess I was in a good place to be open to the reality of God. I was working as a summer intern at Genentech and was leaving work to go for my 2^nd argon laser treatment of my left eye.  The first surgery 6 weeks prior caused the large E on the eye chart to become an F. Needless to say I was a tad apprehensive.  Well, the receptionist at work asked me if I was a believer and I responded with something like ‘I guess so’.  Then she asked if she could pray for me and I said “yes,” because honestly what did I have to lose.  She stood up in the lobby placed her hand on my shoulder and prayed for my surgery and for peace.  The drive to the doctor’s office was what blew me away; I had a peace that was absolutely out of this world. As scared as I was I couldn’t have conjured up this peace if I wanted to.  And thus began my wonderful journey with God.  The E on the eye chart was gone after this treatment, but I had PEACE!

I'll take Deep Blue Sea for $100

My last visit with my retina specialist I was told that there is a "thickening of the retinal pigment epithelium".  My mom asked "What does that mean?" To which I replied "It is medical speak for 'you are hosed'".  There was no fluid at that time (fluid is caused by blood vessels growing unchecked and dumping blood behind the retina (translation: bad).  The treatment for fluid is Avastin. I guess when there is a "thickening" it may lead to bleeding, it may not.  So the doctor said my choice was between the devil and the deep blue sea.  In other words, we could treat and I could lose eye sight or we could do nothing and still lose eye sight.  Glad to know I have options.  How about I choose the sailing vacation in Fiji, can that be somewhere between the devil and the deep blue sea?