Sunday, May 1, 2011

Delusional

I am an optimist. Always have been always will be. I think that where there is a will, there is a way. I can keep my hopes up when faced with the impossible. I have Fibromyalgia and I think I can cure myself. Crazy right? I think I can do something doctors and scientists can‘t. I think with proper nutrition, exercise, sleep, and lots of love and support- I can cure myself! I truly believe with LOVE anything is possible. I am not interested in ”accepting” that I have a chronic illness. I am not even interested in ”dealing” or ”coping.” My one track mind is focused on one thing- getting better. I have made lots of progress in the past few years, but I still have a ways to go. I try not to get too ahead of myself, so I don‘t get too disappointed when I have a set back. Maybe I am totally delusional for believing in a cure? But it is what gets me out of bed each day. It‘s what makes me keep trying. It’s not easy to be in pain and be exhausted all the time. It was no shock that people with Fibromyalgia have a higher rate of suicide then people with bi-polar disorder (manic-depression). If I thought I was going to have to live like this for the rest of my life, I would want to kill myself too. Luckily, I don‘t think it will be like this forever. I have faith that God has a plan for me and it includes being restored to perfect health. I believe in miracles. I have to. There is no other option for me. I believe in the power of prayer. Maybe you could say a little one for me? I pray everyday that God will cure me and I will live the rest of my days pain-free and healthy. Maybe if there were enough of you out there praying for me, I will get my miracle? It couldn‘t hurt. So, if you could take a second and send some healing thoughts my way it would be much appreciated. Pray a cure will be found for all of us. 


May 12th is Fibromyalgia awareness Day.


So be aware :)


Sunday, March 13, 2011

A year later…

Baby, you did not break my heart, you opened it
Happy first birthday in Heaven, we miss you and we LOVE you so much!!
  Page 3/13/10

What can I say baby? I still miss you. I will always LOVE you! We will always LOVE you!! Page, you changed us both forever. We will never forget. You will always be our baby. Our first born. Our son.

It still boggles my mind that I am a mom. I am a mom, to an angel. I do not comfort my baby in the middle of the night; he comforts me when I wake up crying in the middle of the night. No one calls to see how the baby is, they just check in to make sure I am ok. There are no pictures. Only a scrapbook of ultrasounds, one of you alive and healthy and the one that delivered the tragic news you had died. I kept the first few things I bought for you and gave the rest away. I kept the little Phish onesie and the Phish hat, they were the very first things I bought. I kept the sympathy cards. I kept the baby‘s breath from the flowers that were sent. I needed these things, something tangible to touch, something to hold.


I miss you and LOVE you more then I can express in words. You will always be a part of our life. A momma never forgets. Thank you for the little signs to remind us, that we are loved too.


I love you too!


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*