October 7, 2014

Define Disability...

If you have been following the blog for a while you may have heard me talk about receiving Disability Benefits. I don't talk much about it because I have gotten a bit of backlash for it. I didn't apply so I wouldn't have to work. I did it because there is no way I could go back to work and keep myself as "stable" as I am right now. And surviving on Davids income alone seems impossible. I had been planning on going back to work just before I was diagnosed.

Today I got a letter in the mail stating that my case was under review. I stared at the pages on the packet I have to fill out. I remembered how small I felt in that courtroom asking for help. How scared and embarrassed I was. Even though I had a whole team of doctors behind me, supporting me. Even with David beside me reminding me to breath and to stop laughing out of nervousness. What I really wanted to do was curl up in a ball and die. It honestly seemed like it would be easier. Being questioned about things I was just learning and not having enough confidence to fight for myself. It was awful. I was denied. And after my lawyer pushed back, we won. I feel all those emotions coming back to me as I write this. What if I am denied again.

I would love to be able to work a full time job. But I'd have to stop taking my medication and my encephalopathy would only worsen. Yesterday I made banana bread, turned the oven off but never took the bread out of the oven. I've locked my self out of the house and left the stove on. I have cut myself, fallen, gotten lost and forgot who I was. I've become hesitant to leave the house. I dread it. But I try to make the most of my good days. I can volunteer with the Rescue every chance I can. David drives me and is ready to pick me up as soon as I call him. I spend soccer practice in the car because I worry that I look as bad as I feel. I put on a smile as part of my outfit for the day even though on the inside I am an anxious wreck. I deny help because I hate that I need it. Do you know how hard it is to be a good parent when you are so unsure of yourself? When your mood can go from hot to cold before you can even catch your breath. Have you ever been so mentally exhausted because when you kids are home you are constantly keeping track in your head of where they are and telling yourself they are fine. All while trying to double check everything you are doing so you don't screw something up

When I get home after school my thoughts go a little something like this.

Ok it's 3:15. Is the garage door closed? Doors locked? How many kids do I have? One. Two. Three. Where is Grandma? Backpacks!! Folders. Oh wait, whats for snack today? Did I make something? OH crap I hope I turned the oven off. Where is everyone? Backpacks! Folders. Folders. Folders. OK everyone has their folders. What was for snack again? Wait! Did I eat today? I should eat something. Did I put the clothes in the dryers? Dinner, whats for dinner? Oh hey look someone commented on my FB picture. Wait, when did I share that picture? Oh I forgot to text so and so back. Oops David text me 2 hours ago and I never hit send. Sorry Baby! What was I doing? Where are the dogs? Oh right behind me. Where are the kids? Guys?!?! Anthony is in his room reading. Alex and Eva are finishing homework. OK. Crap!!! Guys! Come get your snacks! Sorry. Dinner. I need to start dinner. Practice in 3 hours. Wait where is the soccer bag? ANTHONY!! I should text Grandma and see if she can watch Alex. No energy to play soccer with him at practice. Dinner, right. Wait GUYS! Where are you? Homework now! OK. Dinner. First water. Feeling a little queasy. I never ate did I? Breath. What time is it. 3:30. Focus Kim.

Sometimes I catch myself just pacing back and forth with my hands on my hips trying to figure out what I am supposed to be doing. By the time I start dinner I am done. And that's just in my head. If only I could give you a run down of my medication and the side effects. Maybe someday. But its something that has to be done and I am determined to do it until I physically can't anymore. That sounds a little stubborn, but I know what my future holds. I know I will miss dinners because I am in the hospital. I know that there will be weeks where I can't find the strength to make dinner. I try to remind myself that cuddling them a little longer, read another chapter or at least sit with them while they fall asleep because there will be days that I will miss it all. Even the meltdowns and arguments, I know I will miss them too.

But for right now, I am just going to fill out theses form, have faith in the doctors and my own decisions.

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