A visit with the retina specialist

I had an appointment yesterday with my retina specialist, which in of itself congers up the desire to run for the hills. I hate these visits.  I have to go through all these diagnostic tests to have someone tell me “Yup, your vision still sucks”.  I have never been told that directly (obviously, that would be rude and unprofessional).  But really in essence that is what is being communicated.  Yesterday I go and am told I have a blood vessel growing in my eye and blood pooling behind my retina.  Yahoo! (sarcasm). The good news first: a blood vessel is treatable with Avastin, technically.  So I had the proverbial (and literal) three injections in the eye.  The first is an anesthetic, followed by Avastin, and then a “balancing of the ocular pressure” by taking some fluid out.  The bad news is: my retina condition/disease (does it really matter what it is called?) is continuing to be unstable.  Another frustrating thing is that there are other drugs that are in the same family as Avastin on the market, but none of them including Avastin are “FDA approved” for ocular histoplasmosis.  Unfortunately, my condition is NOT a large population like Age-related Macular degeneration or diabetic retinopathy. So the likelihood of there being other drugs for me are slim to none especially when Avastin is $70/dose and Ilea & Lucentis are upwards of $2000/dose.  I kind of think the insurance company will wig out there.  The literature, thus far, has said there is little to no difference between Avastin and Lucentis. Don’t even get me started on the pharmaceutical industry. I worked for them for several years and let us just say they are not in the business of helping patients they are in the money making business-- that I believe falls under the heading capitalism.   I am not bitter.  Ilea is a new drug on the market that seems to have a longer therapeutic effect. It is also an anti-VEGF drug like Avastin and Lucentis.   Anti-VEGF means anti-vascular endothelial growth factor.  In layman’s terms it is an antibody that blocks a growth factor that is present when there is new and rapid growth of blood vessels; it actually spurs production of blood vessels.  In normal circumstances it is fine, but in the eye unchecked is bad. The irony is I used to do research and development on similar drugs in my career. 

Comprehension and sight go together

I never realized how much comprehension was linked to vision. This is a huge struggle for me now since my vision loss.  The funny thing is I actually will squint to ‘try’ and see well enough so that I can understand something better.  Even though squinting does absolutely nothing, my brain still tries.  I guess I shouldn’t fault the grey matter for trying eh?   I read an article last year and from the few gathered cues I got it was about a young man in high school and a math council.  I was almost at the end of the article before I realized I was missing something critical. It stated something to the effect of “we are trying to get the word out on the dangers of math”.  Hmmm.  Back up here Nelly, something is amiss.  I went back to the top of the article and reread it.  It was a meth not a math council.  (I wanted to learn about the dangers of math, seriously).  This is just one example of how interrupted my reading has become.  This has been a very hard reality for me because I am such an avid reader.  My reading speed has come way down and (obviously) my comprehension has been affected.  I don’t read the newspaper or anything frivolous.  Basically, it has to be worthy of reading for me to fight all the obstacles to read it.  The good news is I do have several devices from the Library of Congress for listening to and obtaining audio books and a wonderful program on my computer to magnify text as well as an audio reader. Additionally, I should be getting a CCTV that is specific for low vision shortly. I am on the cusp of being able to read a little more comfortably with the help of various tools. So in the meantime, if there is something going on in my world or community that is kind of “critical” to know, please call me and if you know of any great books or authors email me your recommendations.

Grief cycle, each event and circumstance does have and end point

          I have been blogging a lot lately about grief (in a non-direct way). I haven’t had someone in my life die recently; however, I have suffered loss.  Loss is loss and every time you truly “lose” there is a grief cycle to go through.  I hate it, but having been through the cycle multiple times I know that there is light at the end of the tunnel and things do get better.  It all royally sucks, but it does get better.  So, I guess the question you are asking is ‘Why am I in the grief cycle?’  My vision tanked again.  You know that cute grid picture on the right of my blog?  Well last Thursday I could see some greying around the middle and lines going wavy more than usual.  Right now the center of the grid is simply gone. Always before when my eyes do this my vision does come back a certain extent.  It comes back, not because the condition has healed itself but because my brain has relocated a better spot on my retina to bring images into focus.   I feel like I have done all this work to adapt and rehabilitate and then it is like being placed back at square one and asked to start over again.  I described this process as being like getting pulled out to sea on a rip tide, and then you use all your strength, training and knowledge to get back to shore.  Just as you are about to lay a hand on the beach another rip tide hauls you back out to sea and you start over.  I am exhausted.  I was told I not only have suffered a primary loss (my vision), but secondary losses (all my fine tune vision requiring hobbies, my degree and training being rendered useless, and everything else my lack of vision has stolen.).  I think the hardest part of the grief cycle is how people respond to it.  When you are the person on the outside looking into a person and their grief is rather frightening.  It makes you contemplate those things in life no one wants to ever think about.  However, as the outsider you don’t have to do any of the work, surfer any of the effects, deal with any of the obstacles.  You are simply an observer.  There are no words to say, nothing that can be done accept to just stand by and silently support the hurting simply by your presence.  These are the times you learn the depth of friendships.  Friends, true friends, silently climb into the trench with you and choose to just be with you in the midst of the loss. They don’t try to ‘fix it’ or tell you how you should deal with it, they just buoy you up with their presence, compassion, and love.

Can anyone out there relate to this?

I have been a believer of Jesus for 20+ years.  I have done countless bible/book studies.  I do believe that Jesus is at work today just as He was during His brief stint on this earth.  I seem to find myself in these studies where there is a similar theme/story given.  A person has a hardship and God asks them to give something up or trust Him with some part of their life or leave a circumstance at the foot of the cross.  The person sweats it out, suffers for a time and then….wait for it….there is a miraculous healing, the “thing” they had to give up was only for a time (usually short) or some other “happily ever after” scenario.  Just once I would like to hear a story about the person who prayed and gave something up to God but that thing/person was still taken away from this life.  I am not trying to morose or overly somber I just want to hear my story told once. I prayed faithfully every day for over a year for my father’s cancer to be healed.  Then as his health really declined and there appeared to be no relief I prayed “God, if there really is no cure and no improved quality of life, please take my dad home”.  And guess what, that was the prayer that was answered; my father went to be with the Lord the very next day. Then this crazy eye disease, I have begged for it to be taken, but it is still here wreaking havoc on my sight.  Where is the miracle you ask?  Well, the miracle for me is that I wake up every day still believing that God is good and has my back.  I trust Him so fully that it is overwhelming.  I have faith that He will do great things with my life regardless of my losses and disability. And I see that He is actually using these losses for His glory.  My relationship with my God is stronger and more alive than it has ever been because of my circumstances.  But these same circumstances seem to really impede my ability to relate to a lot of fellow church goers because my story is messy and can’t be tied up with the pretty bow of “happily ever after”.  They can’t accept or even fathom a sacrifice that is placed on the altar which actually sits there for a life time or is taken up to heaven.  Here I am growing closer to God yet more alienated from those who have never experienced significant loss. I have had the privilege to stand with those whose child or parent died, marriage crumbled, health declined, or is disabled.  Honestly, I glean more hope, inspiration, and wisdom from my fellow travelers than from a book/bible study that keeps it neat and simple.  I have learned that life is anything but neat and simple and it takes courage to reflect God’s love in the midst of the suffocating sorrow, excruciating pain, or harrowing loss. I guess I know what my purpose is now, to communicate and share what it is like to have a life like mine and how to know that God is in the midst of it all.  I need to share my story so no one else feels like I do when a fairy tale is shared: alone, left out, and unnoticed. It is not a fun place to be, even when I feel God nearby.

Acceptance is not easy

Apparently I have issues with acceptance.  Frankly, it has issues with me.  I have come to this place multiple times over where I want to be able to just sit down and have the straight answer given to me.  Here it is, this is all that you need to accept.  Then you could pick it up and strategize how you are going to move forward. Once you do, you are done and can move on.  Ha, if only life were so easy! Instead, we analytical types that deal in black and white, rudely find out that life is grey, multiple shades and hues of grey.  No one can tell me how bad my vision will get; if there will ever be a true cure/fix, just silence.  How do you accept something you don’t know yet?  How do you come to terms with a condition, situation, diagnosis, whatever, when you can’t have all the facts before you and make an educated decision?  All you can do is accept what is before you right now, today.  That’s it.  Stop predicting or planning the future, live in just today and be intentionally present.  If I can just remember what I need to do today and accept what is, I find a serene place.  But when I start going down that ugly road of “what if”, “if only”, “I could have, would have, and should have” that serenity is gone and it is replaced with a depression that can settle like a thick fog.  Clarity is gone and anger is just simmering under the surface.  Anger for me is a positive indicator of fear.  When I get scared, really scared, I get mad.  I get scared when I can’t control the future and I desperately want to. I get scared when there are unknowns, for example, how bad are my eyes going to get? What does my future look like? Can I be successful before I burnout from working with my disability?  Can I find something I am passionate about and my eyes don’t get in the way? Can I truly accept that all my college and professional training were just for that season and it is now time to move on to something else?  Will I ever feel “normal” in my skin again? Will I ever get to a place where I don’t want to eat my weight in malt balls to assuage this pain? I guess I just need to lean back on the motto “progress not perfection” and just keep putting one foot in front of the other because as long as I am “doing the next right thing” I am making forward progress. If I have forward momentum then I can’t be sitting in morass of self-pity but actually moving toward acceptance and away from despair. I heard once, “just because you trip on a step doesn’t mean you have to throw yourself down the flight of stairs”.  Here’s to “one step at a time”.

Acceptance, it is a continuum not an end point.

Acceptance is a funny thing.  When you think you have it, it is gone.  Or something comes up and steals it right out from underneath you.  It is a lot like when you are just about recovered from having the wind knocked out of you.  Then you get hit again and you are left gasping for what little air you can pull into your lungs.  This is the continuum of acceptance.  Some days you are closer to “complete” acceptance and other days you are about a threads breadth away from complete despair.  When people talk about having good days and bad days, it has a lot to do with acceptance.  When our acceptance level is high we are at peace with our surroundings, recognize our shortcomings and not resent either. When it is low, we are cranky, hostile and downright unwilling to do or accept anything or anyone. I have been thrust down my acceptance continuum toward despair.  I had my driving test and all was good.  Then I started to notice that yet again my scar in my eye is expanding.  What does that mean you ask?  That means I go through a gradual loss of vision and then in about 6-8 weeks I’ll gain some, not all, of it back. Have you ever seen ribbon used by drill teams? That ribbon in flight is what all my straight lines are doing to me now.  It also means I miss things reading, trip over stuff, step on things, and clear counters, all because my most recently adapted vision is gone, yet again, for another day.  I have gone through this multiple times and quite frankly it is exhausting.  Just when I get used to my environs, I am back to square one in training. Ironically, the other main contributor to ending up in a vat of self-pity is this prideful push to help everyone else not to feel bad about my circumstances. I wish I could just be told straight up what exactly I need to accept, once and for all, and I’d happily and willingly move toward that end. However, when it is a dynamic, constantly changing and morphing circumstance it is like accepting that gelatin will eventually sit motionless. No one knows when or where but when it finally does, something comes along to upset the static state yet again.  I need to get back to accepting, my vision is what it is, regardless of what is going to happen long term.  I need to get back to the “one day at a time” motto and live it vs. fighting all the variables of the future.  I can’t control them anyway.

Good news I can drive!

I was evaluated today on my ability to drive.  The short answer is: yes, I can continue driving.  What an absolutely exhausting visit.  Working within the limitations of low vision requires a lot of scanning and other "adaptive" techniques to do basic tasks.  And this activity will leave you feeling like your ran a 10K against your best wishes, up hill.  They had this computer test where you are shown a picture of a little car and a little truck.  They look identical except for the truck has a longer bed and shorter cab. Then they flash a picture of one of them on the screen for shorter and shorter periods of time.  We are talking milliseconds.  Then you get a screen asking you whether you saw a car or a truck.  Then they do that and add a second car at a spot in your periphery and ask you to identify car or truck in the center and the location of the car in the periphery.  Then the do all that in the midst of a screen with a lot of visual busyness.  I scored in the normal range for all three tests (and that is normal for those who do not have sight issues).  The OT was very happy with my ability to see in the periphery.  She was also impressed with what all I "can" see with such significant central obstruction.  Due to the instability of my vision I will be evaluated every 6 months to make sure that any changes to my vision are noted and to make sure I am still maintaining the level of safety I am currently employing.

Marshmallow

Yup that is right we are talking about marshmallows today.  Why you ask?  Our educational system is so messed up that they are now teaching pychobabble at your local schools. I am probably opening a can of worms here, but quite frankly, I don’t care.  My 8^th grader has a “health” assignment (and I use the term health loosely because in my opinion this is our society trying to shape our young minds into a collective and acceptable thinking pattern.) Any way back to the “assignment”, the task is to put a marshmallow on a table (it represents drugs) and stare at it.  You got it “STARE” at it.  And then will yourself not to eat it.  Ok, I digress, SERIOUSLY a MARSHMALLOW, is that really what you people came up with?  I could easily walk away from a marshmallow.  Shoot I could throw it in the trash and be fine with it, no guilt and absolutely no draw.  How about a bowl of cheese puffs or other yummy chips, or a bowl full of your favorite candy, then stare at THAT.  Try to just eat one and then will yourself not to eat another for 15 minutes, an hour, the remainder of the day.  I can’t think of a single friend that would flip for a marshmallow (that is probably why they are my friend).  So this is supposed to represent the draw of drugs, alcohol and smoking?  Really, what are these people taking, drinking, and smoking?  Then the next part of the assignment is to get a friend to eat the marshmallow.  Say WHAT?  Are you kidding me?  “Psst, hey man it is a really good marshmallow man.”  “It is the pure stuff you know.”  I thought we were supposed to be teaching our kids how to NOT succumb to peer pressure, not engage in it.  I don’t know about you, but getting peer pressure to work wasn’t a problem in my day.  Resisting peer pressure, now that is a COMPLETELY different story.  “Hey, everyone is eating marshmallows man”.  Now that I think about it though, maybe talking someone into a marshmallow may prove to be a fairly daunting task.  “Hey, that stuff is NASTY, no way!”  I am telling you parents out there who have kids from about 5^th grade an above, READ what the kids are doing in “health” class.  It will make you laugh, cry and get downright frustrated.  “So Billy is getting an “F” in arithmetic, but he wrote this touching poem about the horrors of eating marshmallows”.  I am sorry people but LIFE does NOT give you an A for trying.  It gives you an A for excellence.  And how can one be excellent if they are wasting their time staring down a marshmallow on their dining room table?

Dreaming in perfect vision

My dad died of cancer back in 1996.  For several years after he died I would only dream of him in his diseased state.  Then one day I started to dream of him in his healthier days.  He was restored, alive and cancer free. And to this day I continue to dream of him in his pre-cancer days. Last night, I had my first dream with perfect sight.  It was a bizarre dream; I was on a jet (that was supposed to be getting ready to take off, oddly enough) and it was sitting on top of the water in the ocean.  The ocean was doing the big roller waves where you disappear in the trough and then come out way up on top of the hill to turn around and head back down.  If you have ever been out at sea in a boat you know what I am talking about.  This is no choppy water on a reservoir, this is 40 foot swells.  The point of this isn’t the plane, or the ocean but the fact that I could SEE all the details of everything around me.  I could SEE the texture of the swells of ocean water. The colors were vivid, beautiful and the detail was breath taking.  I haven’t seen this kind of detail for almost a year now.  I don’t see texture. I don’t see the contour of the road or ground beneath my feet. I can see that there is a clock on the wall, but I can’t see the numbers or the hands very well if at all.  I hope I continue to “see” normally in my dreams because that was absolutely amazing.

The world through my eyes

I get asked a lot on what I do and don’t see.  I guess it is kind of hard to really describe low vision in terms people can visualize.  For all that I can’t see I do see quite a bit.  Here is an example.  I was at the grocery store yesterday buying soup.  I stood under each aisle marker that hangs from above, like a menu at a café, until I located the soup. I no longer can see these signs from afar; I pretty much need to be within a few feet to read them.  I can see the sign, just not the writing on the sign. Then I make my way down to the shelves of soup. I can tell by the colors and labeling that there are Progresso and Campbell’s soups.  I cannot read any of the labels on the shelves or the cans that tell me the flavors of soup.  I either have someone help me, get out my magnifier, or get within a few inches of the cans. My overall field of view is quite large, it is just all the fine tune reading and detail vision that has been most affected. I don’t like to buy produce because of my blind spot; it makes all fruit look like it has bad spots on it.  There is a grayish black spot where the vision is gone.  Driving is the other common question I get.  I can see the street lights, I know what the traffic signs say from years of driving, and I can see cars and all things large.  Movement is a wonderful indicator to me as well.  I have stopped for two squirrels and one prairie dog since my vision tanked, so not to worry I will stop even though I can’t recognize you. I can’t see street names, license plate numbers, or faces of folks in their cars, on their bikes or out walking. I see colors and contrasts, however if there isn’t enough contrast I can miss things.  I can’t find a black stapler on a dark desk top.  There are certain things that are just too small in my world; one of them is my cell phone.  Anything about the size of my cell phone or smaller can get lost for months at time until I come across them again. It all has to do with distance from the object. For example if my cell phone is right in front of my keyboard on my desk, I see that it is there. Looking at a table top across the room, I may miss the phone all together. In the grand scheme of things, I can’t see anyone flipping me off, looking at me funny for a misunderstood comment or hair out of place, or any other visual cue that gives me a pulse on the general public’s mental state.  However, it can be downright maddening when I need to see something fast and don’t want to take the time to work at seeing it. Hopefully, that gives you a glimpse of my world through my eyes.

Driving priveleges

I guess I am a hair resentful of the fact that some people can be pretentious and fake. Dealing with a disability pretty much strips you down to your core.  You have no choice but to humble yourself and ask for help, accept your faults (they are seen anyway), and be who you really are.  If you put up fronts and live behind masks and want to know just how totally exhausting that is to keep up, go low vision. Your whole life and how you live is suddenly on display for all to see and you no longer have the luxury to fake it. I finally got an appointment with the Center for Neuro-rehabilitation.  I don’t have a neuro problem, though some of you might disagree. Either way, the Center for Neuro-rehabilitation is the organization who will judge whether I am worthy capable of driving. So you want to talk about faking it, I had to go to the DMV today and pull my driving record, without being obviously low vision. The gentleman took my $2.20 from me and handed me my record while saying “This is the kind of record we like to see”.  There is nothing on my driving record.  This is one of those difficult things where the doctors have told me I am o.k. to drive and I, lacking all confidence, am left to wonder whether they are completely off their rocker or not.  I, being the “rule follower” that I am, want someone to deem me “safe”.  I don’t want some minor infraction and be left explaining how I have an unrestricted license with low vision. I could see it now, “uhm, officer could you show me where I need to sign, I can’t see the line.”  The truth is I don’t drive unless I feel that conditions are safe.  I have already restricted myself in all the areas that I don’t feel safe.  I don’t: drive at night (for some 3 years now), go to areas I am not familiar with, nor drive in high volume traffic areas.  I wouldn’t dream of getting on the roads in the Bay Area. However, I could care less if driving is taken from me.  In some respects I would welcome it wholeheartedly.  It would be one less stress and one less worry. It is the beauty of acceptance.

Are you or are you not a control freak?

If you want to determine if you are a control freak (CF), I would recommend having children.  You might have been just a weekends only CF, but in the presence of children it is for all to see.  The glaring reality that you are a CF starts when your children are at a young age. It is when you think, as a mother, that you can control when and what they will eat, how and when they use the restroom, or when, how, or how long they will sleep.  I love those moms who think they have all the above mentioned totally figured out.  (Silent giggle) They are delusional, see previous post on positive thinking.  Then the children get older, more willful, and wiser.  This is the time the CF think they can manipulate, coerce, threaten their children to do school work, chores, get up in the morning (yes, that is a repeated theme), and make wise friend choices.  Those of you seasoned CF’s out there KNOW what I am talking about.  You plot, plan, scheme and then when it comes time to deliver you are left standing there saying “wow, I didn’t see that one coming”.  I am going to tell you a secret.  No one can truly control anyone else.  You are powerless over their choices.  Unfortunately, when it is our children it is PERSONAL.  It seems like it reflects on our parenting skills, education, how we were raised and our very essence. I have not mastered this in the least.  I have learned to cope with it by using a God Box.  A God Box is a box of any kind where you can write on slips of paper EVERYTHING you can’t control, but desperately want to and stuff them in.  Then once or twice a year bring out the box and read through what you have given Him.  I have found a good 85% of the stuff is either resolved or I am not uptight about it anymore.  I toss those in the trash and keep anything that is still eating my lunch.  No matter how much energy I expend, the child will do what he/she will do.  They will make mistakes and they have to learn from theirs just like I had to learn from mine. I am not powerful enough to mess them up but I do have the choice to be a solid voice of encouragement or the whiny voice of irritation.  I am trying to choose the former, even if my kids think I am the latter.  Oh yeah, I guess I can’t control what they think or feel either.