Friday, February 25, 2011

We are in love.


We are in love. We have known we are soul mates for years now, maybe we always knew. Bob has always been there for me, and I will always be there for him. About a week after we celebrated our 3 year anniversary, Bob asked me to marry him. I of course said YES! We happily announced our engagement to our families. There was a lot of hype that summer about 8/8/08, and how it was a lucky day to get married. I wanted a special, magical day to get married too! 9/9/09 didn't sound right for us, and 10/10/10 wasn't going to work either, but 11/11/11 seemed just right. It gave us plenty of time to be sure we wanted to make a lifelong commitment to each other and plan the perfect wedding. The number one is also a great way to represent our unity. "One LOVE" was the perfect theme for a fall wedding...

It also gave us plenty of time to thoroughly do our research. In my research, I sadly discovered it is not in our best interest to get married. This is the part where it gets complicated, so pay attention. I am disabled (totally and permanently). I rely on social security to pay my rent, pay my bills- and well, pay for everything. It’s the only income I get, and it’s not even that much. I am so grateful for what I get, without it I'd be totally screwed. Seriously. I became too sick to work at the young age of just 23, but did not even get social security until I was 27. They determined my benefits by my short work history. I receive both SSD (social security disability) and SSI (supplemental security insurance). By receiving SSD, I qualify for Medicare and by receiving SSI, I qualify for Medicaid. The SSI program is a "needs" based program. I get SSI because my SSD only pays so much (or so little) because of my short work history. Are you confused yet? I am a little- just trying to explain it! But what I am getting at- is that if I were to marry anyone I would lose my SSI, because I wouldn‘t  ”need” it. This is because they will consider his income to determine how much I get, and he doesn’t need to make much for me to lose SSI (basically, they say 1+1 = 1 ½ instead of 2). It’s often referred to as the ”marriage penalty.” If I lost SSI, I would lose my Medicaid. If I lost Medicaid, I would lose Medical Motors services that bring me to my zillions of dumb doctor’s appointments. I know what your thinking- just drive yourself! The awful truth is when I need to see my doctors I am often unable to drive myself (due to my disability). If I were to ever need a home healthcare aid (these are things you need to consider when you are disabled), it would cost thousands of dollars out of pocket without Medicaid to pay for it. If I had to have surgery Medicare would pay for some of it, but it would still be very expensive, with Medicaid it would be paid for in full. Medicare has all sorts of spend-downs, deductibles, and ridiculous co-pays, that I hardly need to worry about with Medicaid. So, not only would I lose much needed monthly income (potentially hundreds of dollars), I would lose numerous other services that I need, if I were to marry the person I love. It’s too much to risk, and just not worth it. We would loose what little financial security we have. In fact, according to social security if a couple is ”presenting themselves to the community as husband and wife—they should be considered married for purposes of the SSI program.”*(see below for link)  My lawyer said this even includes posting your facebook status as ”married.” Or even casually referring to each other as husband or wife. We can wear (promise) rings, but we can‘t call them wedding bands. There can be no walking down the aisle, no public exchange of vows, no ”you may kiss the bride.” Basically, what it all boils down to is- we just can‘t get married. We can‘t have our dream wedding. We can‘t even pretend we are married.

We can still spend the rest of our lives together. We can still LOVE each other. We can still throw an epic party with all our friends and family. (Just don‘t call it a wedding!)  

We can also raise awareness about the ”marriage penalty.” And maybe, just maybe, we can can abolish the ”marriage penalty.” We are not the only ones affected by this; there are millions of disabled folks in this country. How many are suffering financially because they are disabled (and rely on SSI) and married? This can be a real crisis when both husband and wife are disabled. Surfing the web, I found the saddest stories of couples forced to divorce just to make ends meet, because they became disabled after being wed or were uninformed. Other couples have been waiting decades for policies to change. It seems like the ”marriage penalty” is discrimination against people with disabilities. Maybe leftover from the days when it was illegal for people with disabilities to get married? Yes, you read that right, it was against the law for people with disabilities to get married until the 1940‘s. And just like back then, when they changed those discriminatory laws, we can change these policies too. But none of that will happen if no one knows it’s a problem. Marriage is a human rights issue. Marriage should not be about money, it should be about LOVE! But it all starts with awareness. So, now you know ;)  

***For the record: Bob and I are boyfriend and girlfriend, we love each other very much and its going to stay that way for a long, long time.




Wednesday, February 2, 2011

This is the age of Aquarius.







*(this photo was taken today, the date got messed up on my camera)

Saturday, January 22, 2011

Unity Soup

Unity Soup

Can't we all just get along?



We have been trying to plan our meals to stretch our budget and be as healthy as we can. On Thursday Bob and I roasted a chicken with fresh lemons and pepper.  Friday I boiled the bones and carcass to make a really yummy broth, it even retained and bit of that peppery lemon goodness. I also started soaking the beans. I soaked the black beans and white beans separate so the colors don't run (and to help put an emphasis on their unity in the soup). In an effort to be more healthy and cuts food costs, we are using dried beans instead of canned beans. This morning I fired up the crockpot (Thanks Dad, Carol and Paul! We use it all the time!) to start my soup. I dumped the bone broth into the crockpot (that got all jello-y in the fridge over night) and cranked it up to the highest setting. Then I started chopping celery (don't forget the celery leaves!) and onions to add in, and dumped some baby carrots and the beans in. I turned it down to the low setting let that all simmer for a few hours. When the beans and carrots were soft (maybe 3-4 hours?) I fished out the cooked carrots, celery, onions, and beans with broth and blended it with my new hand held blender (also thanks to Dad, Carol + Paul!). At this point I realized I had forgot to put any seasonings in, but its better to add the herbs at the end they hold their flavor better. So I added a pinch of this and a little of that (basil, parsley, garlic, oregano, Braggs etc) and the leftover chicken. When the soup was almost done I stirred in a bunch of chopped kale and turned the heat off. I waited a few minutes for the soup to cool and the let the kale cook gently. Then I ate like 3 bowls of soup! Hey, I know what your thinking, but those bowls are not very big, ha ha ha!  It was really good and super cheap! I love to make soup on a cold winter's day. This is food my ancestors would recognize and eat (that's the goal!). Its a beautiful world when black beans and white beans can come together in unity soup.   


Tuesday, December 21, 2010

The longest night of the year

This year there was a total lunar eclipse in the early morning hours of the winter Solstice. The moon appeared red, to those that could see it. I stayed up most of the night, even though it was too cloudy here to see the moon. Sitting in the dark with just a few candles, thinking about where I have been, and where I am going. Who am I? Who do I want to be?

To me an eclipse is an omen of rapid and profound changes. On the darkest night of the year, the sky went even darker. I am in my very own darkest hours. But now I know things will only get better. I know, even if I can't see it in the dark, the LIGHT is always there.  




*reflecting*

Wednesday, October 27, 2010

Honor the Dead


Today was a beautiful Fall day. It was warm and there wasn't a cloud in the sky. October is a time to honor the dead. So we decided to visit Mt. Hope Cemetery. Its so pretty there. I see at least one of the red tailed hawks that live there every time I visit. Today the colors of Fall were really popping in the bright sunshine. Its normally pretty quiet there, but the nice weather and proximity to Halloween had many people bustling around there today. I have to admit its one of my favorite places in the city. When I am there I feel grounded in nature and my own mortality.   


 The Keeper of the LIGHT

Susan B. Anthony is one of my heroes. She has done some truly amazing things. A life well lived. May she rest in PEACE 

some are starting to be forgotten... 


An ANGEL  keeps watch.







But this is the one that really breaks my heart...










Friday, October 22, 2010

Can you still have fun??

Can you still have FUN???

So, life is hard, it really is. Having a chronic pain and fatigue certainly does not make it any better. Being broke, broken, and lost — it all SUCKS!! 

But ya know what?
We have a lot of FUN!
I can still have FUN!


I can still smile and laugh!
 If my legs don’t want to let me dance, I am still content to sit.
 I am just so happy to be there.

So happy! So in LOVE! Dancing with my soulmate at Phish.

(maybe a little drunk too, hee hee hee)

Me with my BFFs    I LOVE these girls!!




We got really close!


Page Side = Rage Side

On Wednesday, October 20th 2010 we went to Utica to see Phish play. We had more fun then I could even imagine. It was AMAZING to say the least!!


The tunes ---->




"Good times, bad times, you know I've had my share."