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. 

I did something creative

It's been a while since I posted anything. All kinds of zany shit going on in my head right now, but I'll focus on something positive and fulfilling.

I was a part of an INCREDIBLE wedding last weekend (10/06/13) and got to flex my budding seamstress wings in the process. I did some minor alterations to a dress, but I'm pretty proud of the outcome and wanted to share.


So here's the dress in it's original glory. It's a size 6. Um. Yeah... I am not.

First step was to take the lace around the waist off. I pulled out my trusty seam ripper and went to town. Here's the dress with the lace removed.

Then I pinned on the copper ribbon that would be replacing the lace. I only stabbed myself 20 times, but was very pleased with the look.

Here is the ribbon fully stitched into place. The ribbon is wired, so it laid down nice and flat for stitching! Only stabbed myself 10 times getting it on!

So the back was a little more tricky, and I didn't take overly fabulous "during" pictures. Ok, I didn't take any, haha. For the back I cut a modesty panel out of the skirt liner and stitched it in along the right side of the zipper (which was kept fully unzipped). The left side of the modesty panel hooks into place with hook & eye closures. Since I had plenty of ribbon left over, and the back had a weird pucker to it, I decided to throw in a slight corset back. Along the zipper, I measured out loops and made them out of the same copper thread that I stitched the ribbon onto the dress with. I then threaded the ribbon through and voila! Corset back! I blew up the below picture slightly so you can see the loops the ribbon goes through and the modesty panel in back.

And here is an action shot from the actual wedding. You can see the modesty panel in place and I tucked the loose ends of the ribbon into the back of the dress. In this shot I am fastening the beautiful brides shoe. Love those shoes. Love that girl!! I had a great time at the wedding, and I had fun working on the dress too! <3

A Break

I mentioned I was going to head up north to my parents house for a bit of a break - a little reprieve of my life to just relax, heal, think, and be.

It was wonderful.

I sent an email to the bestie describing what I did, and I shall paste it here... Since it perfectly articulated what I did, why try to recreate the wheel. ;3



What I Did on My Summer Vacation

1) Ate Bacon

2) Ate Candied Bacon

3) Ate Smores

4) Ate Candied Bacon... ON a Smore (struck culinary genius with this one)

5) Printed stuff on tank tops

6) Made some crappy art

7) Took a (mostly) naked nap in the sun on the deck

8) Went for a hike with B'scotch

9) Ate Bacon

10) Played fetch with B'scotch for hours

11) Went for a 2 mile walk with B'scotch (walking in sand should count for 3x the activity)

12) Thought about who I've become - and that I don't care for her very much. Also thought about finally being honest with DH about who I feel I am - what I've been twisted into, and what I've done in the past. This TERRIFIES me, but I can't move forward with my head firmly wedged up my ass in the past. "You gotta put your behind in your past." 

13) Slept in a huge snuggley comfy bed.

14) Woke with the sunrise, went to bed when I was tired

15) Meditated

16) Did some gentle yoga poses/stretches

17) Laid in the grass and just listened...

18) Ate Bacon

 

Next time I will go up for more than 44 hours.

 

OH! I also took a couple baths... in the ginormous Jacuzzi tub. Just me and Buddha, chillin.

I suspect he's up to something...

Disappearing For A Bit...

So I've already been pretty quiet lately. Nothing overly different to say, I guess.

But tonight I am unplugging and disappearing into the woods for the weekend. I'm going to take my small dog with me for company, but that's it. No spouse, no kids, no friends... Just me and B. I'm taking my sketchbook and drawing supplies, stuff to make Ukrainian eggs, and another craft project for my 3-day training shirts.

My plan is to do some walking, take some pictures, create some art... And just be. No responsibilities. Just peace and quiet. It will be interesting. I'm sure I'll have something to say about it when I get back.

Be well, my friends. <3

And now, for something completely different...

I've been playing in nail polish. Pretty pleased with the outcome. China Glaze in Recycle as base, Liquid Leather as tip. Pinstripe in silver.