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?

Security codes

If you have ever posted anything on Craigslist or upload a link to Facebook you have experienced this lovely feature.  It is usually a series of letters, numbers and symbols that look a lot like what someone on acid sees.  Then they ask you to "type what you see in the box".  Are you KIDDING me????  I have spent countless minutes typing, and then retyping those STUPID codes.  Like being visually disabled isn't enough.  Oh, and just so you know when you use a program like ZoomText, the larger you zoom the more distorted it becomes.  And for kicks, for those who see just fine, press the "audio" buton sometime on one of those pages and see if you can decipher what the code is.  You know if folks could just use a little etiquitte these types of features wouldn't be necessary. And if you don't know what "etiquette" is you need to leave this blog immediately. 

Making lemonade

First and foremost I am thankful that we are able to afford a really good insurance plan and for everything that they cover.  However, the burden has been since 1990, I haven't really had a choice except to choose the best PPO out there.  I cannot afford to have my retinal disease show up and be told "um we are going to choose your doctor", "we don't cover that doctor" or "no, you can't leave the area or the state to see the best specialist there is".  Thus my budget includes a pretty big hit for insurance.  

The curse is, when it comes to disability there is a kind of limbo you can end up living in. This is the place where your insurance doesn't cover expenses and you cannot get any kind of government assistance.The Federal definition for a vision disability is the definition of legal blindness which is 20/200.  I am 20/100 in my left eye with no central vision and 20/90 in my right.  I may never be 20/200.  My insurance will also only cover "vision rehabilitation" when I reach 20/200. Basically, I am in limbo until my vision is 20/200, which may never happen.  .

Luckily, at a low vision support meeting someone told me to check out the department of vocational rehabilitation.  I am working with a local office and they have been WONDERFUL.  They have paid for some evaluations that my insurance would not cover.  They are definitely working with me in this gap between private insurance and the government. And for that I am extremely grateful.

The bottom line, you have to struggle due to the limitations of your disability. However, you have to work really hard at getting help, so you don't blow through all your savings to obtain goods and services that will increase your quality of life. You need to be grateful for the good stuff and then when it comes to the hard stuff push through, because the solution for those things comse with hard work.

 Life backs up in the drive way and drops tons of lemons, it is work to make all that lemonade, but just think how refreshing that first glass is going to be when it is all done! FYI I am not awlays the most gracious lemonade maker, some days I am inside thinking "if I don't acknowledge the presence of lemons, I don't have to do anything right?".  At least until the neighbors start to complain about the rotting pile of lemons out front.  Hey is THAT in the covenants?

Spell check and suggestions to boot!

One of the many struggles for the low vision is we don't always catch spell and grammatical mistakes.  I thought I would share that, simply because I used to take great pride in making sure my communications were polished.  I can still be polished, but the sheer amount of time it takes me to zoom everything 400% and read and re-read my messages gets down right exhausting.  I ask that you go with the "spirit" of what I am saying, and not the syntax.  I still are a college gradute. (I do hope you catch that joke!) I am very grateful for spell check and also the fact they give you a list of "suggestions".  The only thing is sometimes I don't zoom in enough to check to see if the suggestion is even contextually accurate.  Que sera! Trust me if you follow this you will understand over time. 

Blogging evidently is for the sighted

Wow, trying to learn and adapt to this blogging thing takes a lot of, what is the word, hmmm,  SIGHT.  You will have to excuse that lack of polish, being of low sight this is going to be pretty much about about my posts and not all the fun bells and whistles of other blogs you may be reading.  However, as I get my feet wet, who knows I may be able to improve the ambiance.

Snarky people

As an individual with a disability I deal with some folks who are, shall we say, COMPLETELY CLUELESS.  I have had folks ask if I need stronger glasses or who have recommended that I should eat certain green leafy vegetables or what ever the latest and greatest in the 'herb" department is.  I am always struck by the question, that I never say out loud, "Don't you think I would have tried EVERYTHING and ANYTHING if there really was a chance at recovery or improvement?"  I eat leafy greens regularily and have for a long time and all I can say is I still feel like a rabbit and it makes my coat look amazing, but I still can't see. 

Noobeginnings

No, my title does not have a spelling error.  It is a blended term for "Nube" beginnings.  You'll have to excuse the fact I am brand new tot blogging.  I'll try not to mess this up.  The purpose of this is simply to have a forum where friend and famliy can see (no pun intended) the latest on my journey with vision loss, a place for me to vent the frustraions of disability and finally to encourage others on their journey's that it will all work out.