Thinking Out Loud

So here I am, upright and alert at 1 am. The upright part is a constant struggle, but the alert part, happens a lot. I told myself I was taking a hiatus from blogging, and I certainly have kept true to that. The problem is, the mind didn’t stop writing. For me, I find myself composing a million entries in my mind, but not having the willpower to physically bother to just type it out. It’s like that is one step too much a lot of the time the past few months. So I lay there and think about things. Religion, politics, the state of my health, family drama, sometimes zombies after watching too much of The Walking Dead. I craft it all out in my head, what I would say, IF I was writing. Telling myself that the therapeutic value of writing is something that I have found helpful in the past, but still, not actually getting up and doing anything about it. So, still in the fashion of not making promises to myself I don’t know if I’ll keep, I sit once more trying to jumpstart the disconnect between my brain and putting it down on paper (or blog as the case may be)

I have been though a lot since I was doing this as a regular thing. My health has been a roller coaster of coming to terms with the way things are and trying to manage life as things get thrown at me. I spent three months recently not eating enough to sustain energy to function, because Gastroparesis decided to take over my body on top of the Rhuematoid Arthritis becoming increasingly hard to manage. Spending days on end fearing and steering away from food, having my joints uncontrollably ache to the point of needing extra assistance walking and surviving in general just sum up a pretty miserable winter by most counts. We have been adjusting to Ken working nights, sleeping days and not quite knowing where I fit into all that. Digging out of financial issues, trying to retain a tether to friendships I haven’t been able to keep up with, and going into a pretty deep depression have dominated all in the past few months. At one point, I just wanted to curl up in the most remote corner of my house, with a blanket and just not think anymore. The freedom of stretching out in bed seemed even too overwhelming some nights. I went off pretty much all my medications and am currently struggling to get back into a regimen that keeps me as functional as possible. I had plenty to be thankful for, yet bringing myself out of the pit was something I just could not seem to undertake. Sometimes its hard to think about the reality that it probably WON’T be the last time I go through this sort of thing. That I just have to keep moving on and letting myself take the time to rest and reorient as needed. Lather, rinse, repeat.

At the moment, we are dealing with the logistics of having our car damaged in a car accident, dealing with insurance and the waiting game of getting our car back. Ken is on his way out the door for two weeks military assignment in Hawaii, which doesn’t include me, and I’m jealous about that. He better look sufficiently sad in every picture he takes, the nerve. I have to mentally and physically prepare to drive up to DC for a few days, mostly to help out my grandmother with some stuff, maybe feel good enough to enjoy a few things while I am there. It certainly helps that the rental SUV we have at the moment, I thoroughly enjoy and I might have to give it back with great sadness when all things car are completed.

In other news I have been craving eggs on my burgers lately, and its kinda been non stop on that end…I want one right now actually. Which reminds me, our oven is broke and I need to call that in.

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The Ups and The Downs

So according to Social Security, they concede that I’m disabled enough to have limitations in the line of work i have been doing for the past number of years. However instead of granting me disability, they have proposed I just “get another job.” Have I mentioned that through the years I have downgraded the intensity of every single job I have had from physically lifting and moving patients around to doing nothing but sitting behind a desk, answering and checking patients in for appointments? I CANNOT GET ANYMORE PHYSICALLY LESS TAXING HERE! And when I was forced to quit my final job they were shooting me in the back with SIXTEEN INJECTIONS of lidocaine to numb me up to keep me upright in my chair so I could finish the work day. SO TELL ME SOCIAL SECURITY, WHAT JOB SUITS ME? CONSTRUCTION PERHAPS? Will that put my HS Diploma and lapsed CNA/GNA licence to good use, because that’s all the skills I have. I’m a medical worker, I know my fucking limitations thanks.

Ok, enough of that. I also just reread the last email that former friend wrote me with her ultimatums gave me, for the first time in a week. I haven’t responded to it still. It still invokes the same stomach churning upsetness it first did where I am at a loss for words at how I could possibly reply without being snarky or incredibly awful in my response, or just cry my whole way through it. I just am not at a place where I can respond at all I do not think at the moment.

Especially not in the wake of one of my best friends since I was teen getting engaged this weekend to another friend I have known of ours since I was 18! I wish them both the very very best, I cannot wait to see them start this part of their lives together, they both deserve nothing but the best. I love Christine so much, I sat in my car and almost cried when I heard the news I was so emotional about it, and I’m not even the damn person getting engaged. She is. But then again, you’d have to understand the past 15 years to get why I feel entitled to be oddly emotional for her. I could probably write a book dedicated to the shenanigans of our friendship in this really bizarre Sex in the City meets My So Called Life sort of way. I couldn’t ask for a better person to make those memories with either. I miss living around the corner from each other all the time now that we are adults and have to live adult lives now.

For reals though, Christine, if I don’t hear some Jump Around at this wedding, our friendship is going under a serious probationary evaluation. 

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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.

And The Knock Out Goes to….

I feel like I was hit by an 18 wheeler today. Boom. It’s all about the chronic pain and fatigue up in here today. The crippling, take away your will to function kind of fatigue. If only I had a disability hearing today. It would be perfect. I could easily prove I was incapable of standing for more than a minute or real problem solving thought even without a sense of balance, or an active episode of neurological motion processing issues, which seem to be the only reprieve I’m getting today. I have actually been up since 6, out of the house at 7 driven to Ft. Lee and back and sat through a dental procedure with Ken and dealt with the Army’s bullshit over it today. All before 10 am. I have no idea how I actually accomplished ANY of this other than the foggy thoughts of wanting to just end it several times and sheer willpower of survival because I have no choice but to keep breathing. And I had to be the designated driver.

It’s disheartening to review my logs for my neurology follow up this week and realize my migraines have not decreased as much as I hoped, and in the past week in particular have been beating me to a pulp again.

Luckily now that I’m banished to the bed writing my confessions before giving up my breath of life for the day (dramatic aren’t I?) I was just joined by the BATCAT ever stoic in voicing his opinion of what should be done to bitch slap chronic illness right into oblivion…..

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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