Tuesday, June 12, 2018


Social Security Hits Again


Well, it finally came. Paperwork from the Social Security Administration. (https://www.ssa.gov/) Basically, it is my verification packet. My chance to prove to them that i am still disabled and thus am still entitled to my benefits.

It's hardly even a packet. One sheet, front and back, of questions and ten sheets of instructions in every language you can think of. Governmental waste at its finest. But necessary. So i lay out the rules and begin to write out the last 24 months of my life on the neatly spaced but too few lines provided.

Questions like are you working or have you been self employed are easy. No and no. Though i write my little blog and help edit others’ writings online, i have yet to find a way to earn from my writings. So in that respect, i still need my benefits.

It gets complicated when they start asking about the medical stuff. They get right to the point too: is your health better, worse, or about the same as June 2016. (My DOD) That one question threw me. Of course it should be easy ti answer, but its not. Because there are so many factors to consider and too much riding on a ‘fill in the blank’ answer.

You see, my benefits kicked in due to a fractured back 2 years ago. Since then, my lucky self has endured 3 mire fractures in what now seems to be a new reality for me. My back is toast and i have the disease and required medications to thank. So, i can honestly answer that my health is worse. And i did.

But the finality of placing that particular ‘x’ in the box brought up so many emotions that they need to be addressed, and validated.

I did not spend my time since being approved for disability sitting on my butt watching LMN all day. I have sought treatment, i have exercised, i have changed my diet, and i have lost weight.
Medications have been discontinued due to my vigilance and efforts to keep fighting and keep trying to get better. Physical therapy is a way of life. I walk. And i feel healthier!

But AM i better? Picking an answer to this question is like missing a mackerel being thrown to you and getting pounded in the face by several pounds of fish slime. You are forced to admit you stink. After all the pumping up i've done, i still smell like the bucket of bait waiting to be fed to the beast. I am still disabled.

And i can measure my disability in feet and inches. You see, losing weight and feeling better are one thing… but getting better in a real physical way is another. And that's not happening. I can now barely walk around the block. A goal since my first compression fracture in 2015, and one thats not getting closer. I pull myself up stairs. I would have thought my legs would be stronger with the PT. But the disease keeps on as well, and i'm not sure i'm staying even.

There have been other issues as well, such as a routine appendectomy that required 4 separate hospital stays to recover from. ‘Routine’. As in for me, nothing will ever be routine again. My body cannot fight the way others’ can. Or even the way i used too…

ExplaIning these things on a yes/no form with 2 lines for comments is just impossible. Like ‘my migraines are now controllable with diet except my gastroparesis is worse and im only eating mush.’ Well awesome! I have so fewer migraines i'm off topamax! But i'm surviving on cream of wheat! Woo Hoo!

This government update form is for informational purposes only. Its meant to allow them to gain a snapshot of how you compare to yourself from the issuance of benefits.

But it becomes so much more to us, the disabled, the dependent, the ones living day to day in a cloud of getting by. A cloud that allows us the luxury of seeing improvements that don't exist in the long hall. I turn a page when reading without my finger shaking now. But both hands now tremor while doing bigger things than reading.

I was allowing myself to live in the clouds and feed my delusions of getting better until this form came. And the necessity of being real was forced onto my psyche. Because in the long run, it doesn't matter that i can walk around the block. It matters that i break by bending over. It matters that i break lifting a load of wash. It matters that i break putting dishes away.

In fact, I break everytime i feel well enough to participate in life. And that's what matters in deciding if i am better or worse. Because no matter how much walking i do, PT i complete or dietary changes i make, i will still break. Feeling stronger just makes it more likely i'll try something...like moving an antique Queen Anne's chair across the room. Alone. (Ending me up on the couch for 3 days.)

So i am not better, and i am not the same as, but rather i am worse than i was. And how sad is that after the time spent fighting the disease, recovering from fractures and surgeries, winning over migraines, and forcing my depressed, sad ass out into the world to see stuff and do stuff that makes me happy.

How sad is it to have to face the disease head in and admit it is winning.

But that's what the paper calls for. A true accounting. So i gave it one. And my doctors did too, because it asks if you've discussed returning to work with your doc. So i did, and i can't. And really, who would hire me with my odds of fracturing during normal routine activities?

I finished up the form with a listing of medications, appointments, treatments, hospitalizations, and surgeries I've had. (I needed more room.)

And that was it. Found a stamp, sent it in, and wait to see if they believe me or if they decide they need to see the back breaking freak in person. My luck-they will!

Six questions to review and update their records. Six questions that took me from thinking I'm on the way up to landing my butt squarely on the hard ground heading downward.
Maybe it needed to be done. A good reality check is always helpful lest you become so distanced that you forget about your needs in the first place.

I'll say this… having to face how much worse i've gotten in 2 years was eye opening. And cruel. But it allowed me to see the progress as well. The fact that i do still walk after 4 fractures or the fact that i can sit long enough to enjoy my boys showing me something cool. I can be still enough to take photographs and tolerant enough to travel great distances for family.

I'm worse at everything, but can still do everything. And continuing to ‘do’ is my whole goal.

Let the government have the big picture. Keep the little day to day accomplishments to yourself. That's where your healing moments are. It's what gives us our hope and happiness. Its how i measure my progress, even if the hand i’m measuring with hurts like hell!