Friday, December 31, 2010


Honestly, I have been so focused in my creative visualization process on the Phase II aspect of my Big Idea that I just have expected everything else to fall into place. In other words, since I feel like this whole thing is bigger than me, I more or less handed it off to the universe, and let it all go. That meant that I didn't worry about being approved for SSDI. I was led to an organization that made the process easy, has a 98% success rate, did all of the paperwork, and while I feel frustrated, and stalled out, about not making any progress about getting better in the now, I really don't focus on the "if" of SSDI approval. In fact, this organization has a 50% success rate on the first submission, so I was really able to rally my visualization down other paths. In my mind, I rubber stamped that a "yes" and moved on. I was thinking constantly about new and better ways to make the most of any funds raised. How can we do more with what we have? What needs am I overlooking, etc.? How can I make this whole system better for OTHER people? How can I make it easier for OTHER people to get well?

Of course, all of this hinges on my getting well. And my getting well hinges on Social Security recognizing that I have debilitating migraines. I forget crap. I lose words. I get lost in familiar places. I have serious neurological issues that my doctors don't even understand. I have muscle and joint pain that I am just living with right now, because my body continues to have bad reactions to all medications that are prescribed. All movement is very painful. In other words, everything hurts, and my mind is like a computer with wires that keep getting pulled out arbitrarily, and plugged back in. There seems to be no rhyme or reason to it. So, I can spell just fine right now, but in a few hours maybe not so much. And I might be able to grasp the word for "telephone" easily right now, but later, when I am in the midst of conversation it might be... "You know the thing that rings and someone is on the other end and they are calling from somewhere. We have four or five of them." And someone will say, "Telephone?" And I will respond, "Yes. I lost the word for a minute. Telephone. Don't ask me to spell it. Ha ha ha." But it really isn't funny, because I know my brain is shorting out all over the place, and the roulette wheel is only just starting to spin.

Where is all of this coming from? I got my letter today. Social Security denied me. They have declared me fit to work. Even though I have no car. Cannot drive. Get lost. Lose words. Have migraines that keep me in bed for days and weeks at a time, and have lost 20 pounds in 6 months. Bringing me down to the unhealthy weight of 104 where I am currently sitting. Even though my mother would have to go to work with me every day. I am fit to work according to them. I know that this is a game for them and all part of our totally screwed up system. I tell myself that. They know I will appeal. They just want the process to go on. And on. And on. And I suppose that would be okay if anything were happening on this end to make my life even reasonably better. But it isn't. I go to see two doctors every month to the tune of $400. And I pay $200 for health insurance. And for this huge amount of money I get NOTHING. No relief whatsoever. No help. No assistance. No benefit. All it shows is that I need medical care. I have to continue to go to show that I need medical care. Even though if I actually got any medical care it would cost so much that it would break my parents. We are teetering on the edge of the cliff now.

So, we shall appeal and wait another six months. Although, I understand from my representation that we are most likely to get denied on the second appeal. So, that means that our only real shot is on the third appeal. So, we are really looking at a year out before getting any sort of help here. I wonder how much I will weigh then? Or if I will still be alive then? The one thing I do know is that my parents should not pay my medical bills if I should die. Social Security will pay your medical bills in the event of your death, should your condition kill you before you make it through the process. I talked to the father of someone whose son died during the process. He and his wife paid the bills. Social Security apologized, and said that they were sorry for his loss, and then asked about the bills. When they found out that the bills were paid they said that there was nothing that they could do. He said that they could reimburse his family. Social Security said that they would have paid any outstanding bills, but since they had taken care of the bills, there was nothing they could do. Which was total bs. Of course, there was something they could do. This family had just buried their child. They could have reimbursed them on the medical costs since they had dragged their heels on getting him the help that might have saved his life (bastards). Instead, they went with an insincere apology. Terrible system. Like I said, spread the word about those bills. Leave them outstanding if you are in middle of a claim. Social Security will pick up that tab if you die.

My parents are having a New Year's Eve party tonight and have invited a bunch of their church friends, camping friends, and other friends, too probably. I wasn't not looking forward to it, but I wasn't dreading it. Now, I am seriously not happy about it. A party is the last place I want to be. I feel seriously Grinchy. I was psyched about 2011. It was the year of possibility. I really thought I was going to get my SSDI and be on my way to wellness. Now, I see it as another year of debilitating migraines and agonizing pain. Now, swallowing a bottle of pain pills is looking appetizing. I am tired of the unending pain. I am tired of being tired. I am tired of being the financial drain in this family.

I was going to delete that because it sounded really depressing. The thing is this: it is true. I have suicidal moments. I think those things. I haven't thought them in a while. I have been in a much better place ever since I filed for SSDI because I was doing something proactive. It got better yet when I started becoming really visual with my Big Idea. And bought my domain name. I felt like I was moving forward. Chronic pain is a bitch, people. I apologize to that follower who I just lost because of that curse word. I try not to curse much, but that is the truth of it. Chronic pain wears on your body, mind, your spirit, your soul. It wears on you. To think you see a light at the end of the tunnel, only to turn a corner and see another year of more pitch black tunnel, is freaking discouraging. However, I won't be swallowing a bottle of pills anytime soon. I probably will be a total pain in the rear end to live with, so I totally pity my parents.

I played this yesterday for Yvonne. Today I play it for me. Hallelujah.

image found at


  1. The hard thing to remember is that you simply cannot imagine all the great stuff that IS gonna happen in the next twelve months. Keep on trucking. You've got 145 people who believe in you out here. Make us proud.

  2. Who are you using to file your claim? I'm in the process of appeal right now and just had my appt. with the psychologist although I'm not real sure why that was necessary. If you haven't tried Allsup, give them a look. I know it's frustrating and sometimes makes you think it's all hopeless, but nothing is hopeless until we give up, and I'm too damn stubborn to give up, hope you are too.

  3. Allsup is handling my claim. They have been great.

  4. honey, while I can't know what you are feeling, there is still hope. Hang in there okay.
    I will pray for you as that is all I can do.
    I gave you a shout out on my blog because of who you are ...hang in there.

  5. Robin, I'm sorry about this. Remember that a slip of paper can't change your big idea, your optimism for the future. I know that you want the insurance and disability coverage so that you'll have some security but, remember, your main job is getting better. Sometimes the problem with SSDI is that to keep the coverage you have to stay unwell.

    As a former insurance company employee (18 years in auto claims) I would use a more neurological main diagnosis than migraines, especially since it appears you have several and, when you get down to it, the decisions are probably being made by some overworked clerk who has no sympathy for migraines.

    But even with SSDI, you have to get well because you can't live like this anymore. SSDI won't get you there. It can give you security but not the wellness you truly are seeking.

  6. I'm sorry. I was denied SSDI because I decided to be a SHM and didn't pay into the system for 15 years, and I am disabled, not enough credits, and then denied SSI because my husband makes too much. SS only looks at incoming money, not outgoing medical bills, seems unfair, when the bills wipe out the incoming money. This was a real downer for me in 2010 and took me a few months to get over. I understand chronic pain, live with it. What's a girl to do? I do the best I can day to day, and pray my kids turn out, my hubby doesn't leave me for a younger non-broken down model. And, blog to keep insane and remain in humor, I can't lose that and pray you won't loose your sense of humor. I feel like it somedays, I understand that you do too. We can't life our life to the fullest, we are in a war against pain daily, and it weakens, disables, and wears us plum out! Hang onto what you can, what you're grateful for, these things are the lifelines. May you have success in your appeal.

  7. Seriously, though, Robin, that's the EXACT thing to be expected from Social Security. They're just like that. If it makes you feel any better, they do the same kind of stuff in Poland. There's this guy who lives few streets away from me, and he's on a wheelchair and has his both legs amputated but Social Security still assumed his fit to work last year and I'm not even kidding. That's the shit they do to people. They don't care and you just have to find a way to fool them somehow. As for your suicidal thoughts - don't make me go there and slap you across the face all right? because I might :) Except I might have to go through Mexico and, you know, risk a lot, since I won't get a proper visa-thing...If you feel like writing down a lot of pessimistic stuff, email me, though! :)

  8. Hi I found you over at Follow Friday 40 & over, and I'm running late, but better late then never I always say. I only had time to skim through your post today, but I wanted to tell you I'm on SSI I have Spinal Stenosis. You need to go to your Social Security office with a medical report from your doctor that you are incapable of working. Also, usually Social Security denies people 2 & 3 times, but when I went with a doctors report I was accepted right away. Otherwise you may have to get a lawyer & let them fight for you. I know many people that have done that. Good Luck! Happy New Year.


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