This is a great article on my condition.

http://www.lowvision.org/histoplasmosis_maculopathy.htm

I found this today when looking for some more detailed answers to a post on a discussion board I am a part of. This describes pretty much my entire experience with POHS.

I already hated clothes shopping, but now it is especially loathsome

 Clothes shopping, it brings up a lot of different emotions depending on where you are in life.  I guess really, it depends a lot on your weight and how you are doing with your body image.  However, those factors today are the least of my worries.  First of all if I can find a women’s department in the store, that is success.  Then figuring out which section of the women’s department I need to be in, like not maternity.  My low vision doesn’t allow me to read the signs above the racks; I can’t read the price tag let alone the size unless I hold it up to my face.  So the old days of glancing around and finding quickly what I am looking for are just, bluntly, gone.  I wanted to find some skirts today, because really I haven’t bought more than the denim one I have had since I hit goal weight with Weight Watchers in 2009.  I found a few skirts, but they were like $40.  I was at Target; I’ll spend $40 on a skirt on the Clearance rack at Macy before spending it at Target, just saying.  Anyway, the skirt thing was a complete bust.  I did try on a few dresses and some shorts.  The thing is, when I look in the mirror, first of all I am my worst critic.  Secondly, I am not able to take in the full picture.  Imagine yourself standing in the mirror.  Now remove one whole leg, or half your torso and half your face and determine if this particular piece of clothing is flattering on you.  After removing those particular pieces add the effect of everything looking like a Salvador Dali painting and finding something decent is pretty much up there with making a picture square on the wall.  Picturing this might give you a better idea of why I find this particular task up there with having the ultrasonic cleaning at the dentist they use to remove plaque buildup.  (In case you don’t know I hate it, all of it)  The one really weird thing about clothes shopping is my inability to see feels like I stand out and am very obvious that I have issues.  Add to my already neurotic state the feeling of standing out like a freak and you have the most amazing space to be in.  Luckily, I can’t see anyone staring or making faces and honestly, they are all busy fussing about their own business to really notice anything about me. I have enormous compassion for everyone who deals with any type of disability because it takes courage to push through and do everyday tasks and to just participate in life.  You are my heroes.  Just don’t ask me to go clothes shopping. 

Sometimes, change is just miserable.

Change is inevitable, misery is optional.  Well, for me sometimes change is miserable.  Sorry I have been gone for a month, but I had family in town and then I travelled back to where I grew up. 

To travel while still working out the routines of a disability is daunting, overwhelming and exhausting.   I feel like all I ever say any more is: “I am exhausted”.  However, it is a different kind of exhausted.  It is the fatigue that comes from having to fight for every little thing that used to come with good eye sight.  I can’t read street signs, menus, marquees, price tags, and countless other things I have taken for granted until my good sight was gone.  I should reword that, it isn’t that I can’t READ them, it is that I can’t SEE them from a distance and quickly take in the information I need. 

At the airport, forget security and all the craziness of that, I can’t see gate signs in the distance, the displays on trains or shuttles, the signs that show the terminal, the names of the airlines, or the lovely monitors that tell you whether your plane is delayed, cancelled or just gone.  Now, looking at this list right now, I know that my family will get me to where I need to go (and did) and that if I was travelling alone I would go early and get help at the airport.  The key here is “the beginning stages of disability”.  You know the DISCOVERY phase. Just being in the situation and realizing all that I cannot see anymore is like being hit by a sleeper wave when you have your back to the sea.  It slams you to the ground, drags you a few yards out, and spits you back onto the beach gasping, choking, and wondering “what in the world was that?” 

I was informed that it can take 3 years to adjust to such a life change.  Okay!? I just passed the one year mark and have two to go.  I guess I am grateful I have gotten 1/3 of the way through, and that those who have gone before me are well adjusted and doing well with their circumstances.  However, there is one caveat.  My eye disease is still unstable and I could continue to experience a decline in my vision.  So, basically all the progress I make in this time could be abruptly changed and I am back at square one.  Have you ever played a game where returning to the start is frustrating, say like “Candyland”?  Where once or twice is tolerable, but upon the 20^th trip back you are thinking this game needs to live in the trash?  I think you get the idea.  Let us just suffice to say I am doing all that I can do and am trying not to be too grumpy about it. In other words, I can’t change my disability; that I am powerless over. But I can change my outlook in the midst of it, and choose not to let it make me feel so miserable.  I will celebrate the three steps forward, and breathe through the two steps back.

When life feels like a bear trap, don’t fight it will only injure you more.

There have been times in life when I have felt like I have a leg in a bear trap. You are just going along in life minding your own business and then snap, some circumstance arises and you are caught in a trap. The bear trap for me is when life throws anything my way that I do not like and do not care to endure.  It is the proverbial “life gives you lemons and you make lemonade” and I have the courage to say “hey, I have enough lemons”, thank you very much!  This is what I have learned about the bear trap.  If you are patient and you work through life’s hurdles slowly and methodically, the trap will actually spring open or at least give you enough room to escape.  However, if you thrash, live in self-pity, rant, rave, and in general fight your circumstances than the trap will tear you up pretty good.  There is good news and bad news with this whole deal. The good news is as I have done this multiple times over I have gotten better at using the tools that help me to stay in the moment and not fight.  The bad news is sometimes I am just in the mood for a fight and it is a fight I will never win.  I always come away emotionally and mentally bruised and beat up and wondering “why do I try to fight my life’s circumstances in which I have no control?”  I am getting better, but it is still a learning curve.  I guess I don’t fight quite as much as I used to. I just don’t remember how bad it can get until I am thrashing again and wondering why I am not winning and why it hurts so much.  Thus the reason for my absence from blogging, I am licking my wounds and embarrassed that yet again I chose to fight rather than pause and wait for the intense grief to pass. I really need to let myself off the hook for being human. 

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.