Grieving just plain takes time, it won't be rushed.

I have been really battling with the current status of my eyes.  Nothing much has changed, accept maybe things continue to be irritatingly unstable and all the work it takes to “rehabilitate” is overwhelming and exhausting.  I realized this morning it feels a lot like having the first layer of all your skin peeled off. I know; gross right? (Not that I have ever experienced that personally, but I could visualize it).  Seriously, that is how it feels.  I feel raw and sensitive.  I want to be left alone and just hide out at home. I want to not FEEL this in any way shape or form.  What I have decided is that I am no longer going to try to push through the feeling and just protect myself the best I can until this whole nightmare settles down some and I can heal.  I’ll be at the grocery store and on the verge of tears for no apparent reason. This last father’s day just plain hurt, even though my father died some 16 years ago.  The skin thing, it feels like all the things that life normally throws at me just plain sting.   I don’t want to be anywhere around people because someone somewhere is going to ask that dreaded question “How are you doing?” It is innocent and genuinely compassionate but when you feel as raw as I do there is no superficial answer that I can lend that won’t be very obvious to the observer I am a flat out liar.  However, I also don’t want to burst into tears either.  I came up with this skin analogy because I keep being just “in my life” and things just affect me much more than usual, like my thick skin isn’t there.  It actually reminds me a LOT of how I felt right after my dad’s death from cancer.  I’d be at the store, minding my own business and the music over the speakers would cut through the comfortable fog I would be wandering in and hit me head-on. Then I would be standing in the produce aisle crying thinking I am completely losing it, when in fact I am simply GRIEVING  a loss.  However, now I am grieving the previous normalcy of my life. I am hurting over all I have lost with the loss of my vision and wondering when if EVER I am going to feel normal again.  I know that it will get better; I have been through grief many times over.  I just wish it would hurry up already!

I think I’d have better luck on Jeopardy than playing the game of LIFE!

I saw the RS the other day and I guess I had forgotten (convenient right?) that I was due for my 3^rd Avastin injection in the normal protocol for my condition.  All the scans and visual observations showed no fluid and no blood vessels.  Good right?  Yes and no, good there is no evidence of activity, bad because I had to have another injection.  I am starting to slide back into the person who doesn’t play well with others.  I feel like I can’t have an opinion. I am motivated by fear, the fear of reoccurrence, the doctor saying not to treat could be detrimental, and the general sense that it’s all going into the crapper tomorrow. I am tired of going to this office and feeling completely and utterly out of control.  Now, I am not talking about going off the deep end (though it is VERY appealing at times). I am talking about having a medical condition that doesn’t consistently behave itself and doesn’t give me any concrete data like, if you do a) then the result is b).  It is more like, let us do a) and the results can be any letter of the alphabet we’ll just have to run with it and hope we can overcorrect if things go the wrong direction.  I hope this makes sense, and if it doesn’t, welcome to my life!   It is such a small population of those of us with POHS that you can’t get any real solid data.  In other words, there are no concrete answers or studies that you can base your decisions on.  You are basically in the dark (figuratively and possibly literally).  I really miss the days where I would go months and sometimes years with no recurrence and when the decision was fairly black and white. You treat, you respond, life goes on until the next bleeder and it was simple, predictable, and easy.  Now I feel like a I have to jump off a cliff every 6-8 weeks and we are all hoping that the parachute opens and if it doesn’t be sure to call down to me “SORRY!”.  

One accomplishment down, and now I need to just pause.

School is done.  My kids survived.  I survived. For those of you who don’t know I had my children in an online school program this year.  I was their learning coach.  Of course, when I signed up to be their learning coach I had no idea that my vision loss was permanent and that I would face some huge obstacles doing my job.  I had to teach, correct papers, review documents and all the lovely things that this permanent loss has made very difficult if not at times impossible.  If I could get the content on the computer I was golden because I have software for magnification. However, there was a lot of trying to read quickly and understand with just a hand magnifier and it was a struggle to say the least.  Now that we are all done I am happy to report I survived and my children aren’t academically damaged.  If anything they are both very ready for the new schools next year. They have both chosen to go back to a traditional school of their choice.  They now have already done a year of “21^st century skills” and since all the schools are implementing this program now, they will be ready and proficient.  My son took two high school classes this year and did phenomenally, so he will be very ready for high school next year. It would have been nice if we could have done more supplemental field trips and days out, however, I think all and all I need to be very happy with what we did accomplish.  The bottom line was I no longer felt like my children and I were under the tyranny of an unsafe and incompetent administration or board of directors. Probably the most profound and awesome experience this year was having my kids laughing and enjoying school and life again. Never again will I “wait and see” if things get better when it is such a huge cost to my family’s safety and sanity.  When folks say “if it quacks like a duck and looks like a duck, it is a DUCK” they aren’t kidding.  So if someone looks and acts as though they have no integrity and consistently make poor choices, it will not change, REGARDLESS of all the promises and right words they say. You have to make a change and do something different.  And for my kids and me this year was a wonderful, peaceful, pleasant change and are all excited about our new adventures next fall.