It’s been a while since I have sat down to write. A lot has been going on the past month and a half and I am just now getting the chance to put my collective thoughts down on internet paper. The past month and a half has been an emotional roller coaster to say the least. I’ve had some high high’s and some low low’s. Let’s review..
From July 15th through August 15th my boyfriend, who lives in Florida, got to come to Arizona and spend a month with me and my parents. I can honestly say it was the least stressful “meet the parents” scenario I have been through. For the first time in my life I am dating someone I know my parents would approve of. We all had a great time during his visit. Most of the time he was here we didn’t do a lot but hang out at my house but my parents did take us to the Grand Canyon. Neither of us had ever been to see the biggest ditch in the world so it was a new and breathtaking experience for us both. As I stood looking at the canyon I couldn’t help but think about just how small I really am. If you have never been to see the Grand Canyon, put it on your bucket list as a must see before you exit this plane of consciousness, it will definitely open your eyes. During his visit my parents also took us to a little mining town that had tons of antique shops. It was really cool to see all the treasures in the stores. Yes, some of it was just old junk but there was also some really old pieces that you could see the history in. Eventually, it was time for my boyfriend to leave and that always has me pretty bummed for at least two days after he leaves. I miss him when he isn’t around because we just get each other, it’s strange but awesome. Next it’s my turn to visit him. I am going to his house the end of October and staying until the beginning of January and from there I think he will be flying home with me. It’s a blessing and a curse to have nothing but time when you have to be stuck on disability.
I sent in my appeal to disability and my condition, Tricuspid Atresia, was placed on what is called a Comfort Allowance list. This list basically states that your condition warrants the SSA to expedite your case and that if you meet the criteria according to the SSA you qualify for disability. This list only has about 100 conditions and only two types of cancer. I thought this was fantastic because there is no way they can deny me being that my condition is now on this list. Wrong. I got denied by them again as of yesterday. I already have lawyers working on my case and you probably know them, Binder and Binder. My boyfriend used them for his disability case for his Diabetes and they won his case. I hope they can do the same thing for me. I have spent most of the morning filling out their paperwork. The good news is even though I have to fill out their paperwork, they are going to file this next appeal for me and get my court date. I was actually surprised at how angry and depressed I was when I got the news yesterday. I had prepared myself that they probably weren’t going to approve my claim this time and that I would have to get a lawyer.
Although I thought I prepared myself I was still so mad I wanted to punch someone, anyone, in the face. Instead I chose to sleep it off. Here are my emotional qualms with this “process”:
A. I need a surgery that I cannot have preformed until I get disability. I need the insurance. My doctors say I “should be OK” until then but they don’t know that for sure. At the first scan last year of my right atrium they told me it was slightly enlarged but that it wasn’t something to worry about. A month later I had a cat scan on my heart in which they came back and determined that the right atrium is actually the size of a grapefruit and that it is a problem. See why I don’t exactly trust their statements? The truth is they have no idea how long this is going hold up on it’s own and it could stop working anytime between now and then.
B. I have no money of my own. Everything, besides food which I receive food stamps for, I have or am able to do is dependant on other people. I have no pride and hardly a self esteem at all because I used to be an extremely independent person and now I can’t do anything without the help of others. I can’t even go to the store until my mom gets home from work because I don’t have the money to get a car or pay for insurance. I feel like I am a mooch and that it isn’t fair to the people that are constantly paying my way.
C. At some point I would like to live a life to some extent again. My boyfriend and I plan to move in together once my surgery is over. The timeline on that just got pushed way back. Someday I would like to have a baby because, let’s face it, I’m almost 28 and not getting any younger. I know you all reading this think I’m out of my mind because of my heart condition but the doctor actually said that after my surgery I would be physically alright to try to have a baby. He said most of the people with my condition he has seen in pregnancy thrive. The more fluid that is in my system is better for my blood flow and since you retain a lot of fluid during pregnancy that I would probably feel more like a normal healthy person than I do now. It will still be high risk and not without complication but it is possible.
In my adventures I have also been involved in some pretty ugly family drama involving my uncle and cousins. Me, being that I have a low bullshit tolerance since all that has happened to me the past year or so, decided enough was enough and that I had to speak my peace. I did and have no regrets about it. Through everything I have learned it’s important to stand up for what you believe in and the people that mean the most to you. It’s funny how the family members I thought were the most harsh to me growing up are the ones I appreciate most and that I go to bat for now. I have come to understand that back then I mistook brutal and blunt honesty for harshness for no reason. No one is perfect but my uncle has always been there for me even when I needed to hear what a bitch I was being or that I was totally wrong in my words and actions. Maybe it’s just part of growing up in a southern family that we feel it’s fine for us to tell each other when we are being idiots but not when others do it. I am all about if you don’t have anything nice to say don’t say anything at all, however, I only believe that applies when it is unprovoked. I don’t believe it is acceptable to go around spouting off at the mouth about whatever you want because you are hurting so you feel the need to make others feel like pond scum. Just know, if you intend to speak your mind be ready for others to retort. Yes, if you want to hurt people I love and care about and I see it, I’m going to say something. It doesn’t mean I love you any less, it means you are wrong in your choice to show blatant disrespect and you are going to be called on it. Age is not a factor in disrespect and is not something I will take into consideration when you are being a moron and need to be told so.
I will end this entry with a positive. I got a new book two days ago and only have a chapter or so left to read. My mom bought me “Bloodlines” which is the sequel to “Vampire Academy” by Richelle Mead. I have to say I love it, love it, love it! Books help me emerse myself into a different world and forget about mine for a while. This book is a must read for fans of Richelle Mead or supernatural fiction. Why are you still sitting there? Go to Wal Mart right now and start reading!!
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I just love it when you start writing on internet paper ! If you need me you know where to find me and yes I am waiting for the book !
/hugs !
Keep your chin up baby girl….I’m here for you.
Love you and your brutal honesty
,, Thanks for always being there for me as well, and standing up for me with my family! you are more like family than most of my blood relatives. Btw we took the kids to a parade, Ronald mcdonald was there thought of you