Friday, January 24, 2014

Delayed

Usual snow shoe spot
No snow!!! How can we snow shoe? How?
It's been a busy couple of weeks, and our busted laptop was moved away from my comfy blogging chair to the floor. I don't find this super conducive for writing my heart out, but alas, D's back won't allow him to fix the situation, and I can't move the stupid entertainment center to get at the plug. Amanda's blog, presented by dust bunnies, live from the guest room floor.

Yesterday, I parallel parked my new company's car. Yeah that's right, Amanda who would rather walk two miles into town than parallel park, parked that car between two giant trucks. Maybe it was just one giant truck and a fiat. Actually it was a prius and a fiat, but they were HUGE for their make and model...It's an omen.

In November, after receiving yet another denial letter from my insurance company about my machine, I sat defeated, hunched over my steering wheel, crying my eyes out. In my hand, I held a packet of papers one of my doctor's had graciously filled out for me to turn in. Across the top, the paper read, "Application for long term disability."

I couldn't drive. I couldn't walk. I couldn't type well. I couldn't hold a pen, tooth brush, comb, knitting needles, etc. I couldn't really do anything. I had ceded my power to the insurance company, and the remaining had been sucked away by a ridiculous finger infection. A lot will change in two months.

My machine came. With daily use, I am losing on average three pounds of fluid a day. I can walk. I have energy. I can hold a pencil. The disability paperwork is somewhere collecting dust.

Yesterday, I went to a resource fair for kids with disabilities transitioning to adulthood. As is often the case, someone commented on my sleeve.

Interested stranger: Burn garment?
Amanda: No, it's a compression sleeve

Interested stranger: Lyphedema?
Amanda: Why yes.

Interested stranger: I did that work and amputee work for twenty years.

What followed was a pleasant discussion of what has changed in the last few years since she left the field. She got it. She got what I was dealing with. She sympathized, and then she said something totally startling, "You and I both have disabilities, and no one would know it looking at us." She, M, has MS. I have total body swelling.

We have disabilities, we are not disabled by them. The distinction felt so crystal clear. It was like a weight lifted from me.

Today, I was discharged from OT for the first time in a year and a half. My pump is working so well, I don't have to go see my OT anymore except for tune ups. Now I just have to navigate the accommodations and the insurance. I see the end of it though. I see all I can accomplish.  The end is in sight.

Fish Lake in the SNOW!

4 comments:

  1. So, so, good to hear. I am glad you have your pump and it is working well. ~Catherine

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    1. Thanks! It's kind of the last option. So grateful it's working. When will they be able to grow me some lymph nodes already, right? Hope you are well!

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  2. Amazing writing...amazing daughter-in-law. My eyes are making water, again. We are so grateful you are here in G.P. What a turn from October...

    Thank you for yesterday. How extraordinary to gather as a family, all o us, and think and talk about supporting Miss Em. Your forward thinking, enlightened view is so refreshing. Love this fam!

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