Monday, January 31, 2011

Best Husband evah

Adam is traveling right now, for the next couple of weeks. So of course, the kids are getting sick. I am getting ideas and bids to fix up the backyard. It is so exciting, I forgot about my RP for like 2 days! I mean I always see this way, but this way is normal to me.

I have been in a relationship with my husband since I was 21, and I am now 35. We have grown into being adults together. We have created these three amazing children. Lots of laughs, tears, and fights along the way.

He is amazing. I have this thick curly hair, and he cleans out the drain of my sink every six months or so. He hates it, every time you can hear him mumbling, and wondering why I shove hair down the drain. But he does it. He shows up for me in these simple kind ways. And he shows up for me in big huge ways.

I was scared at first, wondering if he would be love me the same, if it would be hard for him to let go of what we thought our future was. He was shocked, I was doubtful of his love for me. "Melissa, would you feel any different about me if I were going blind?"

He is so much calmer than me. I wish I were just a firecracker. I am the grenade to his meadow, the fireball in his swimming pool. Sometimes, he makes me so crazy. Other times, I wonder how he puts up with my insanity. I am up and down right now about all of this. One day, I say, "we need to get somewhere I can settle down, so I can be independant." Other days, I say, "let's live abroad a couple of years, I have always wanted to do that, and what if I can't later." If I lived with me, I would need to be on medication.

Oh Adam my Adam, I promise to stop shoving hairs down the drain.

Tuesday, January 25, 2011

I want my old problems back

I used to stress about a tidy house (okay I still do), losing ten pounds (okay I still do), saving money, and other silly things. Then I went through this whole diagnosis process. I do have to say that the first doctor that told me it was probably a brain tumor softened the blow of blindness!

I was diagnosed three months ago, and I think I was in shock. I felt fragile, really until like Christmas. Not broken or sad, but squishy and confused. At first, I could not think about anything else. Even if I was talking about something else, or doing something else, it was there, waiting for me to be alone with it. If someone would bring up something small and petty, I would have a huge averse reaction to it, once even walking away mid-conversation. It's not like I never said small and petty things (aren't we all guilty of that). I just could not process it at the time.

I feel like I am starting to breathe deeply again. Like okay, let's go. I'm healthy, I'm here, the kids are alright, we are good. My gratitude is building. I am so fortunate, for my family, for my friends, my community, and the grace of God. We are thinking okay, how should we change our lives to figure this out. That we even have the luxury to have those thoughts just blows my mind with gratitude.

I am surely no fountain of peace and acceptance, but I am feeling like I can move toward normal again, which is great, because while I was in shock, I got fat and broke. Lol!

Friday, January 21, 2011

Killed by a zhu zhu pet

I know it may happen. My son received one for his birthday. I miss those little things on the ground all the time, and this thing is just the right size with wheels to take me down for good. I can hear the women on 11 alive news already in my head, blind mother killed by a zhu zhu pet.

So when I was at the retina specialist back in October getting my final diagnosis, I was like "are you sure? I play tennis, and that is a small ball." She told me that she was amazed by what the people with RP could do, and how well they function. She told me that I already probably have coping techniques that I am not aware of, like scanning. You know, like a supermom,with super powers.....

So I started noticing the things I do, because now I know that everyone does not see the world the way that I do. I have one, that my whole family uses. I have a place for everything, and if things are out of place I take mental note of it, and can remeber where I last saw it. Nate will say "Where is my batman underwear?" I will think a minute and reply "I saw those under daddy's weight bench in the basement." Okay, why are his underwear down there? Who knows? The cool part is that I remembered it. Special powers? No, that's RP, baby.

Thursday, January 20, 2011

Should I wear a scarlet letter?

I live in this in between place of not quite being a sighted person, and not quite a blind person.

So when I was first going through the initial appointments, my tennis ladies/friends all knew what was going on. It was natural and easy telling them, because they were there when it was happening.

So I met this new neighbor at the end of the pool season last year. I liked her right away, and thought we could be friends, but I got busy. Finally, I made a lunch date with her (my new years resolution was to work on friendships more). We had a nice lunch, lots of talking, and we have a lot in common. She could definitely become a friend. Do you just let it come up one day?

None of PTA mom friends know. The school doesn't know.

See you don't want people to feel sorry for you, or to be a debbie downer. But I can't see things sometime, like when people try to fist bump after a project. Or a new tennis partner tries to high five me, and I just stand there smiling like an idiot. Or there is the fact that I am a reverse vampire, and I do not drive after dark. I mean I have some pretty bizarre behaviors to accomadate myself. Like tapping towards the bottom of the staircase to make sure I am down. I used to think I was a spaz, but now I have a diagnosis to blame it on.

At some point, I will not drive at all. And carry a cane. But even then, I think I will have significant vision left. I mean you can be significantly visually impaired and still have significant sight. This is so weird. I am considering handing out disclosures to people I meet, but that might seem weird, lol.

Maybe, I will just post my blog to facebook one day.....

Wednesday, January 19, 2011

Night blind

So Adam and I are chit chatting late at night, nothing romantic here, stuff like "did you put carrots in the lunches." All the lights are off, and I say, "I can't see anything." He said "Of course you can't, it's pitch black. But I can kinda see your silhouette." The he draws the edge of my face with his finger. I say, "oh yeah, I see yours too." Then, I poke him in the eye.

We. laughed. so hard. He yells, "WTF, are you trying to take me with you." I have tears of squeezed giggles streaming down my face, my stomach hurt. Oh.....good times.

Monday, January 17, 2011

Bowling alleys suck

It was my youngest offsprings 7th birthday party, and we had a laser tag and bumper car party. Yes, I remember when party's were cake and ice cream and tag in the yard. I actually think that is more work for the mom, but I easily spent $250 on the party today, yuck.

Anyway, this extravaganza was at a bowling alley, arcade type place. Well, would somebody turn on the lights! I walked in from the outside and instantly I was thinking "whoa." My vision decreased by about 30 %. I am not totally night blind yet, but my vision decreases in low light areas significantly. In some ways it is kinda like a preview for me of how things will progress in the daylight, interesting.

I went into the laser tag room, not to participate, but to be the photographer. Hilarious, because I had no idea where any of the kids were! My Natie even said, "mom you should play, you would be an easy target." Little butthole.

(Aside: My daughter said something like that to me the other day, making fun of my bad vision and impending blindness. I don't remember what it was, but it was funny and clever. Then I said "Will see who gets the last laugh, this shit is genetic." We are a sarcastic family.)

Back to the party. It was fun, as fun as kids birthday parties can be, but made me wonder. I knew before I was diagnosed that I did not see well in low light situations, but now I wonder if I over notice my bad sight.

Sunday, January 16, 2011

Funny things I did

I am not a punk rocker, I just kick dogs and smash glasses because I am going blind.

So before I knew what was going on, I thought that everyone saw the world the way I did, and I was just especially dingy and clutzy.

So here is a list of things that I thought were normal that were apparently an indication of my vision loss.

1. When I drop something on the ground, I think oh crap, I am never going to find that. I have to get on my hands and knees and look for elevation changes, or keep moving around to scan the whole floor.

2. When I get busy in the kitchen, I "lose" things on the counter top. Like spatulas and glasses. I break a glass a week. I often cursed my black counter tops and black spatulas, and considered buying pink spatulas.

3. I have also considered orange safety vests for my small dogs and small children that come to my house.

4. About a month before I was diagnosed, I took my youngest to the movies. As the movie ended, my sweet 6 year old said, let me help you in the dark. Then he took my arms and lead me out of the theater.

5. I have always hated 3D movies. They make me nauseous. And I like to sit as far back as possible so I could get a good view of the screen.

6. We moved to Georgia from Colorado in 2008. I thought that it was just harder to see the stars here because of the trees and cloud cover (Oh the things your mind convinces you of). Really, I can not really see stars very well anymore.

7. My night vision has always stunk, but again moving to a more suburban, rural area, I thought these roads were darker at night, then I was used to.

So really that list just seems like old lady complaints. What made me insist something was wrong was the flashy lights,that have increased to being in my vision 24/7. And the sheer number of old lady complaints I had for a 35 year old seemed unreasonable.

The crazy thing to me, is that I have always been nearsighted. I had my eyes dilated annually. I had lasik eye surgery. I went to an opthomologist, and it was not until I was at Emory that my condition was diagnosed. This eye disease is common, I mean like not super common, but 1 in 3000 common. Crazy....

Saturday, January 15, 2011

Go west, young woman!

...I mean southwest, urban, oh f%*! just stay put.

I am just about paralyzed thinking about what the next move for our family should be. I know that I have to stop driving at some point in the not too distant future. If only I knew when.... I really want to be as independent as possible. Our current house is not walkable.

There is this awesome website about the walkabilty of your address, 90-100 is a walker's paradise. My house is a 16.

Here are my options
Stay in the same house options:
1. Become a shut in, grow our my leg hair and fingernails.
2. Hire a driver on occasion that I need it. I am thinking like a fellow housewife, who is in need or want of extra money. In addition, I can send emails out to about 10 neighbor friends to find out whem they are going to the grocery stores and ask for rides.

Move to a different house, same schools.
3. Pay a butt load of money and break even on our current house to move to a neighborhood that is more like a 50 out of 100. Easy walk to schools, moderate walk to grocery and bus stop.

New schools - Kinda sucks for the kids
4. Stay in our current city, but go much more urban. Further commute for DH, but totally walkable. Walk score in the 80s-90s.
5. Stay in our current city, the kids would have new schools, but could stick with same sports and stuff, walk score about 60.

Leave Atlanta. Move to a totally walkers paradise, near my sister and parents. The thing is, they live in Phoenix area,not really a walkers paradise, but we could find an area with a walk score in the 70s. So this fantasy does not exist in this dimension.

Confused? I am. Totally. I have no idea what to do. I hate how much brain space this takes up. I hate thinking about this all the time. My indecision and is driving my husband completely bananas. My friend says stop thinking about it and let the answer come to you, that I am fighting to hard. Ugh...

What is RP?

I don't really know. Well, I know what it is to me, so that is what I will try to explain. Google it. It is complicated. A disease of the retina. No treatment and no cure.

What I know is that by the time I was diagnosed with it the retina specialist thinks I am under 5-10 years from being legally blind. How did she make this decision? Well, she guessed. Because the disease is different in everyone. It progresses at different rates, and it progresses to different levels of severity. Very few, become totally blind, about 4-5%. Most are legally blind by 40.

Basically your peripheral vision closes in and you have "tunnel vision." Think looking through a straw. Also night blindness is one of the first indicators of the disease. In the late stages of the disease, it can effect your central vision.

Just to clear this up. Legally blind means, legally blind even after correction and surgery. So you and your brother are not legally blind, unless you are legally blind with your glasses and after your cataract surgery. Man, that sounded grumpy. Maybe it's cocktail time!

My brood

I am a domestic goddess. The stay at home mother of three children, ages 13, 10, and 7. I would think of clever blogging names for them, but I would never keep that straight.

Mary is 13. She is stunning, fairly smart, and total trouble. She is a 7 year old in the body of a 21 year old. She is sweet as honey, academically very smart, but would probably take a ride from a stranger, and definitely candy. She loves and hates her mother.

Mary was born when Adam and I were in college. I had just turned 22, and had this amazing, purple,bald, pimply beautiful child. We were great parents, especially considering, we were total idiots.

Theo was born 2 and half years later. A little boy, a sweet squishy little boy. He did not speak until he was almost three and then with issues. We never would have named him Theo, if we would have known he couldn't say it until he was like 8. No worries apparently "Phil" was very well liked on the playground. He is 10 now, and very bright, super mellow, and he adores sports.

Nate is our baby. The smartest of all of them, which is a good thing, because I think he is going to be super short, and he will have a witty sense of humor about it. He just turned 7 the other day. I told him to live it up on his last day of being 6, because 7 year olds have to pick up dog poop. You know that little rascal took that as an invitation to streak the neighborhood, too bad I caught him in time.

So, I have no idea if the kids will inherit my RP, Retinitis Pigmentosa. It is hereditary, but I have zero known family history. I have begun the process to have them seen by an opthomologist and will keep the blog updated. It stresses me out to think that they may have this, but they will still be the unique individuals that they are, and I know they are going to be great. I mean really really great.

The history of me and RP

How it all began....
"I am sick of all these sparkly flashers, Adam. And what the heck, I am only 35, and I can't see anything at night!" "Hmm" shrugged Adam. "That's it, Adam. I am getting my eyes checked out and this time I am not stopping until they figure out what's wrong." "Good" shrugged Adam.

Okay, so I have always kind of seen fireworks, auras of light, sparkly things, when I closed my eyes at night for bed. I remember this from childhood.

I had lasik eye surgery in 2005. There was a battery of tests before surgery. One was a peripheral eye test. The young woman said, "push the button when you see the squiggly" I said, "Lady, I see squigglies all the time. I have no idea what you are talking about." She said ,"Oh forget it, this test must not work on you."

Well, as I aged the flashing lights became much worse, and then it was hard to navigate at night, walking mostly. We would go to friends houses, then maybe have a drink, and I was tripping on curbs and what not. I thought, man, I am a light weight. Next, we moved to Georgia in 2008. We live in a part of Georgia that is in the burbs and has lots of neighboring rural areas. I was pertrified to drive at night. I could not see shit.

In the summer of 2010, I had enough and made an appointment with an opthomologist. He told me that it was nothing but particles in my vitreous solution and not to worry. However he wanted me to come back for one more test. A visual field test. He saw the results and said it seemed that I may have a tumor on my pituitary gland, and he sent me to a neuro-opthomologist specialist. In the month waiting for my appointment, I wrote letters to my children in my head, trying to think of ways to tell them I loved them on their graduation/wedding/coming out party/whatever, and not depress them with thoughts of their dead mother.

I went to Emory in Atlanta. I saw the neuro-opthomoligist. She said you don't have a brain tumor dummy! Your just going blind! Whoo-hoo! I am not dying! Three weeks later...Oh crap, I am going blind. I had the final test (an ERG) to confirm the diagnosis, and I saw a retina specialist. And yes, I am going blind, and have been probably since birth.