July 1, 2016

According to the Social Security Administration, the date that I "allegedly" became disabled is July 1, 2016. Well, on my second application anyways.

I had a meeting this morning at SSA where they reviewed my application and asked questions to amend it, so it would make the most sense. Like, why did I go back to work full time after I filed (and was denied) Social Security Disability Benefits in 2014? Well, the government declared I wasn't disabled, and since I "had another hand" I could work in a different field. So I tried. I tried and it didn't quite work out. So in July of 2016 it became evident that I couldn't work full time anymore.

This particular interview was just about my work history and what it is exactly that I do. When I asked about the medical stuff, my case worker said that it would all be reviewed in the next 30 - 60 days, and that they would mail me a letter of determination. She said it can take as long as 6 months if they have a hard time collecting medical records or verifying my employment. I completed all the information online, but there really wasn't a place for me to explain what it is like to live with Ehlers Danlos. All I can put down are the symptoms: chronic dislocations, hypermobility of my joints, fibromyalgic pain, chronic fatigue... But that isn't what living with this is like.

It's waking up every morning and doing a quick assessment to see what may have slipped out of place while I slept, and figuring out how to pop it back before pain registers. Its having to think about every step I take - willing my body to stay put together, concentrating with each step "ankles in, knees in, don't hyper extend, don't roll." Lather, rinse, repeat. It's looking at a basket of laundry and having to guess how much it weighs, and how likely it will be to sublux my wrist and fingers just by picking it up. It's tensing up every time I am near a dog who jumps up, or has a tail or body right at knee level - even when it's my own dog. It's having to explain to nosey clients, cashiers, complete fucking strangers on the street why I have ring splints all over my fingers, and why my hand looks kinda funny. It's having to make sure I don't wack an already broken fused wrist on tables, walls, chairs, doorways because my brain still registers that hand as functional and I literally forget that I can't bend it out of the way and I'm left not only feeling pain, but feeling stupid for not knowing better. Its waking up with tendonitis in my right hand/wrist and not knowing if today is the day that my other hand is going to fall off... That I will no longer be able to type, to drive, to cut my own fucking food...

So I'm a little frustrated today. With the process. With my body. With the unknown variable of what my body will do next to fail me. I never know what is coming, and that is really scary and frustrating sometimes.

May is Ehlers Danlos awareness month... Yay?

I just feel very small and alone in this moment. I'm running out of options and I'm trying to figure out how to provide for myself and my family. It's possible I may not qualify for anything because I'm still married, and that sucks too.

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On a different note, but also somewhat frustrating... I made a couple more fluid paintings yesterday. They were both quite interesting to me, and apparently they gained the attention of my mother. She knows the process. She knows they take weeks to dry. So why she felt compelled to fucking touch one of them and drag her finger down the middle of it is beyond me. It wasn't just a little smudge in the corner... She dragged her finger across it. She admitted to me when I got back from my appointment that she couldn't help herself and she "touched it because it was so pretty..." but it's wet fucking paint... I resisted the urge to snap at her to keep her fingers out of my creative processes, that she had no right to touch it, and she does NOT have permission to meddle in things concerning me. Those thoughts raced through my mind... But I looked at her face, her body language - she looked genuinely sad and embarrassed and I told her I was a little annoyed, but perhaps she should just refrain from touching the canvases without asking first. She said that was fair... and that she was expecting me to be mad.

"Well, you did just single handedly ruin my budding art career, but I'm sure I'll figure something else out since it's now over forever and I'm never going to make another one of these things ever again..."

I laughed it off and she stopped holding her breath. I think she was expecting a similar explosion to the ones I have been dishing out to my father lately.

Not today, Mom. I'm too tired. 

Here's the Skinny...

Okay, I think I have my stuff together enough to talk about what happened.

Saturday February 22nd at 5:10pm I got a frantic call from my friend J* (names changed to protect anyone who cares to be protected). He says he can't get ahold of his roommate, Joe, and asks if I can pop over to the house to check in on him. I say no problem, thinking it was no biggy and he was probably asleep on the couch or his phone was broken or something. I drove over, thinking it would be a quick trip.

J* was on the phone with me when I pulled up. Before I pounded on the door, he said "Mer, this could be really bad... Make sure you make your presence known as you go in the house... There are guns in the house." You'd think I would have hesitated or thought differently or whatever, but I just did the usual Meredith "Dude, no worries, it'll be fine!" And pounded on the door.

No answer.

Went to the back door and pounded.

No answer.

I got the spare key out and opened the back door, yelling for Joe (the roommate). No response, but I could hear the dog going ape shit further back in the house. I walked slowly, continuously calling for Joe. No response. I came around the corner.

And that's when I saw him. Joe was propped up comfortably. Almost casual looking... Except that half of his face was missing. He had killed himself with a shotgun and it was a pretty brutal scene. I was still on the phone with J* when I found him, and to hear the anguish in his voice as I told him his best friend was gone... It broke my heart.

In that moment, I realized that nothing would ever be the same. I walked back into the kitchen and started to make a list. I wrote down the address as I knew I wouldn't be able to remember it off the top of my head. I also wrote "911" at the top, as I knew I had to call them too. Thing is... I was so disoriented I wrote 919... But I quickly crossed it off and wrote it correctly. Police were called at 5:36pm.

The next several hours were a blur. The police had me wait in my car, asking me questions I didn't know the answers to. I had to wait the entire time as I agreed to take the animals out of the house (J* was on vacation, the animals couldn't be left in the house). So I stayed. The entire time. The Medical Examiner finally showed up and did their investigation. After Joe was removed, I called D* to tell her the horrific news... and to ask for her help. I knew I was just about maxed out on my emotional stability, and catching cats was going to be the end of me. I went back into the house to assess the damage... I had asked the ME to pick up as much of the brain matter off the floor as they could. They said they would, but I wanted to make sure. They did a decent job removing the chunks, but it isn't their job to clean. I just wanted to immediately start cleaning, but I just stood there and stared at where Joe had been. Marveled at the splatter pattern. I knew it was out of my capability (Blood born pathogens and all).

D* really helped me keep it together. She's pretty freaking amazing.

So now here we are in present day. I'm trying so hard not to let it bother me. I've been counselor to many people about the incident, but I've lost J*. He's hurting so much and I can feel it. I reached out to him and he warned me that he was going to lose interest in everything, including me. I literally sobbed and begged him not to cut me out... In a later conversation, he said that he was avoiding conversations and people that remind him of Joe. Unfortunately I am sort of standing right in the middle of that shit storm in his mind. I told him that I would stand as far back as he needed me to. He said he would let me know. He's moving to AZ soon and then he'll be gone forever. And all I'll have left of our friendship is the memory of seeing his best friend blown to smithereens... and knowing that seeing and speaking to me causes him pain.

It sucks.

SO. To my dearly beloved friends who keep tabs on me via this blog... Please do not take my standoffishness personally. You all know that I will give my life for the people I love... For my friends. I took a bullet that day, guys. I gave up a piece of me that I know I will never get back. I don't regret it. I'm glad it was me. I know we all say we would do anything for our friends.

I've proved that I would.

I'm just reassessing things over here a little. Figuring out what my boundaries are. I'll be back up for air soon...

Taking a Step in Any Direction

I'm completely at a crossroads in my life right now. So I took a step. I don't know if it was in the right direction, but it was a step in ANY direction. And now that I've taken it, I'm glad. Glad and freaking the heck out. But it was a step... and I can't be in limbo any longer. I can't hide or lie or pretend to feel something I don't. I had no freaking idea how hard this was going to be...

But it is what it is, and I've taken a step.

One of THOSE Days

You know the ones... Where it feels like you can't do anything right and the world knows it? That you just can't quite get a handle on what exactly you're supposed to be doing at any given moment? I'm having one of those days today. And it's not because I don't know what I'm supposed to be doing - I know exactly what I should be doing. I even have a prioritized "to do" list!

I just don't want to. Any of it.

I just want to shrug off all my responsibilities and head back up north, waving my middle finger as I go. Not helping with ANYTHING, just dumping everything at everyone else's feet and saying "here, you deal with all this - I'm done for now. Oh, you don't know how to take care of this? Well guess what, I didn't either until you initially dumped it at MY feet and asked me to take care of it. Did I bitch and complain? NO. I made some phone calls, asked some people, and FIGURED SHIT OUT without whining and complaining the whole freaking time. You know why? BECAUSE THAT'S WHAT ADULTS DO. No one is going to hand you things on a silver platter, that just isn't realistic. Sometimes you have to work hard and figure things out all on your own. Here, take all this and give it a try." (shove shove shove)

Yeah... It's one of those days. I should go outside and sit in the sun for a bit. Get my Vitamin D on and just soak it up.

Can you tell I hurt my wrist this morning? I did. Totally got bashed while trying to get a temper tantrum induced toddler dressed. It hurt. A lot. Got my wheels turning that I'm not sure how much of this I'm expected to actually take. I'm not feeling very strong right now. Quite the opposite. I've feeling exceptionally fragile and vulnerable. So I'm putting up my normal front when things are spiraling out of control... "Everything is just fine and I'm happy to just be alive!" It's a front... I'm losing control over here...

I want bacon... <3

Pay It Forward

I did something today I haven't done before. Not to this extent anyways... I paid it forward. And it felt GOOD.

I went to Michaels to get craft supplies for a fundraiser I have in mind for the 3-day. As I walked to my car, a young woman, who looked lost, scared, and overwhelmed approached me. "Excuse me ma'am... I am so embarrassed to do this, but do you have a couple bucks? Our car is out of gas and we have a long way to go. I'm so sorry to bother you..." She looked down in shame. Her clothes looked like she had been in the car... for a while. I looked at her, smiled, and said "do you have enough gas to get to the gas station?" She looked bewildered and stammered "I... I think so?" I nodded and said "Ok. I'll follow you to the gas station and put a couple bucks in your gas tank..." It was at his point one of her travelling mates got out of the car. "Heather, what are you doing?? We'll figure it out, leave that lady alone..." I smiled again and shook my head. "Its no bother... Can you make it to the gas station?" Her jaw dropped and she nodded. "Ok. I'll follow you."

It was as if the traffic Gods were smiling. During rush hour we had a perfect opening for both cars to turn left on a busy street. The lights cooperated and we were able to coast into the gas station just as their car ran out of gas. I walked up to the car, swiped my car and asked where they were headed. Heather chimed in they were heading to Alma or some such city. They mentioned they weren't from around here (the car had a Maine plate) and that they were literally stranded in a city they weren't familiar with, with no friends or family anywhere nearby. I nodded as I listened, thoughtful to what they had been through. "When was the last time you ate?" They looked at each other, then to me, then down at their shoes. "Its been a couple days..."

I looked to the driver. "Ok. Here's the deal. You, fill up the car. And Heather, come inside the gas station with me and pick out a couple drinks and snacks for your trip." Heather followed after me, thanking me profusely and praising God. We got a couple items and the other girl came in with my receipt. As I was purchasing the food, they both told the cashier that I was an "angel from heaven." He looked at them like they were crazy. When he looked to me, I smiled and gave him a wink. When we got back outside, the girls both gave me several hugs, thanked me profusely, and again said I was an amazing person. I smiled and said "I'm not an amazing person. I've done plenty in my life that I am not proud of. Plenty that would categorize me as far from saintly... But I have one stipulation to my generosity today..." They both looked so scared... "I only ask that you pay it forward. That if you see someone else who is struggling, you give them a leg up if you are able. That is my only request."

"Ma'am, you have a deal. You've saved our lives today... and we will never forget you." Another hug and they were on their way. I wish them well.

Random acts of kindness... They do exist... and I'm proud I was able to participate today.

A Hallow Shell

I downloaded a fun little horoscope app onto my phone, as I was curious what the stars had to say about things for me... So far it's been pretty on the money - saying that things are pretty tumultuous at the moment.

Todays said: You know where you are and you know where you want to be. That is the first step and the last step. All you have to do is fill in the middle and you're on your way!

Seems about right.

But there was something else about this app that caught my attention and made me go "hmm..."

The attributes of my sign are: Active, Demanding, Determined, Effective, and Ambitious.

There was a time when I was all of those things. I intimidated people with my determination and my demanding/commanding presence. Where did I go? When did I lose my "oomph?" I can feel little pieces of the old me trying desperately to break free. Pushing to the surface. Trying to catch a breath of air to bolster itself to finally break out of the hallow shell of whom I've become.

I want to get back to me. I want to be the intelligent, vibrant woman I once was. Now, I understand that I will never be completely the same. I know that my body is different now, on so many levels, that my physical self will never get back to the way that it was. I'm pretty ok with that. I've never been 100% comfortable in my own skin anyways, so this is nothing new. But lately I haven't been comfortable in my own head either. It's kind of a shit storm in there...

You know where you are. Yep. I know exactly where I am. A broken, faded, reflection of who I once was.

You know where you want to be. I want to resurface - to breathe - to rekindle the love affair with myself. To embrace my Active, Demanding, Determined, Effective and Ambitious self.

All you have to do is fill in the middle and you're on your way! Of course they make this part sound so easy... so whimsical, haha. Falling in love with me again means admitting I've falling out of love. With myself, with others... with life. I had forgotten what passion felt like. I had forgotten what inspiration feels like as it tingles its way through you, guiding you, proding you, encouraging you onward.

This week someone said to me "You are wise beyond your years. I almost feel dumb around you. You don't make me feel that way.. but you are just a smart girl." It was the nicest compliment I have gotten in a very long time... and it kinda felt like the old me was making an appearance again.