Struggling to the Top, Again.

To be perfectly honest, I’m tired and I want pierogies. Or sushi. But since I don’t have a car today, sushi is out of the question and I have a feeling Ken might be all sushi’d out. It’s all I want lately. So shortly I will attempt to stand long enough for some pierogies which will most likely evolve into pizza rolls, and I will then hit the bed like I have been doing manual labor all day. The truth is however, I haven’t been doing much manual labor all day. I caught up with a great friend today…. I MISS YOU KURT IRBY!!!!…..I cleaned the kitchen up a bit, and I have been exhausted the rest of the day.

We found out yesterday that I was denied round 1 of SSDI approval. While this was actually expected, my psyche is actually taking it as a blow. Those fuckers have NO IDEA what I deal with everyday, how I struggle to physically and mentally remain here on this earth and try to find a purpose in my life. How I DO NOT want to ask for help, yet I know I’m in no position at this point to make it on my own anymore.To someone on the street I may look like a normal human, but I assure you every step I take is calculated, every activity planned. Everything revolves around having the proper rest and pain under control to carry on. My goals aspire to be the girl who can support others like me from home, while taking care of myself, to let them know they are not alone, there are people out there willing to connect with them. But it cant happen if this stress in my life over where my next meal is coming from continues to be a problem. I need a little support myself so I can give back to those who need support as well. Is our system so broken that this can never be a possibility for me? I hope not. In the meantime, I need a lawyer and advocate to get me through these appeals so I can continue to fight this fight until I can bring some relief to myself and to Ken who is my steadfast supporter no matter what we face, or the outcome. I need to live up to this for him, and myself at this point.

Trying To Ration My Spoons.

Ken has his appointment with pain management today, to get further insight on his back. I wish we could get more answers in just one appointment, but we all know this is a process, so I don’t know if I will know very much even after this initial meeting. I need to pick up my own records (all of two visits before they moved me on to another specialist) and then I need to get the records from the neurologist (the other specialist mentioned previously) because I need to have them to continue with my initial filing for SSDI.

AAANNNNNNDDDDD…….. Speaking of SSDI, they just interrupted this post to call me. Because this system is unbelievably annoying to deal with as well. But I knew that going in, and I’m keeping up on my research to be prepared to deal with them. I’m going to have to cash in a lot of spoons to deal with it.

I’m comparing everything to spoons these days. Its based on an article I read for a way to help others understand what it’s like to be living with a condition that makes you take even the smallest of tasks for granted. Read up here. I’ll be talking about spoons I am sure in the future, so this is where it came from.

The Spoon Theory